RAI Treatment
Thank you,
KYGirl71
Comments
-
sorry about reoccourance.
That is one reason I push for RAI treatments even though the doctors have shifted their position to not doing them as often.
Yes you will have to go off your thyroid replacement medicine for a while unless they can get you Thyrogen shots (currently VERY hard to get)
What replacement are you on. there are many different types if you are on Cytomel it will be the least amount of time (2 weeks i believe) but Synthroid or Amour both are 30+ days if I remember.
The first scan I had to go off of Cytomel and those 2 weeks were hell.
Yes you need thyroid replacement hormone to live and without it you will go hypothyroidic as your body slowly shuts down. You will notice being tired all the time and your memory will start to fail. Not trying to scare you but trying to prepare you.
You will also have to go on the dreaded LOW IODINE DIET. for a few weeks www.thyca.org has a good copy of the LID and suggestions for it. Honestly if you are going off your meds I recommend cooking and boxing and freezing/refrigerating every meal you plan to have for the time you are off your meds. it really helps.
Read this board and thyca and write down every question you can think of to ask the doctors... heck ask them here as well. Do not leave the doctor’s office until you understand what is happening and what the plan is.
The reason they take you off your meds is so the fT4 and fT3 in your body will become depleted and your pituitary gland will send TSH out into your body to have your thyroid produce more T3 and T4. to do this it needs iodine. The Low Iodine diet limits the amount of iodine in your body so when they give you the radioactive Iodine the thyroid cancer tissue takes up the iodine so it will kill the bad stuff.
It is scary it is confusing and you are going to need support.
Remember the only stupid question is the one you didn’t ask. So ask all your questions.
Craig0 -
wownasher said:sorry about reoccourance.
That is one reason I push for RAI treatments even though the doctors have shifted their position to not doing them as often.
Yes you will have to go off your thyroid replacement medicine for a while unless they can get you Thyrogen shots (currently VERY hard to get)
What replacement are you on. there are many different types if you are on Cytomel it will be the least amount of time (2 weeks i believe) but Synthroid or Amour both are 30+ days if I remember.
The first scan I had to go off of Cytomel and those 2 weeks were hell.
Yes you need thyroid replacement hormone to live and without it you will go hypothyroidic as your body slowly shuts down. You will notice being tired all the time and your memory will start to fail. Not trying to scare you but trying to prepare you.
You will also have to go on the dreaded LOW IODINE DIET. for a few weeks www.thyca.org has a good copy of the LID and suggestions for it. Honestly if you are going off your meds I recommend cooking and boxing and freezing/refrigerating every meal you plan to have for the time you are off your meds. it really helps.
Read this board and thyca and write down every question you can think of to ask the doctors... heck ask them here as well. Do not leave the doctor’s office until you understand what is happening and what the plan is.
The reason they take you off your meds is so the fT4 and fT3 in your body will become depleted and your pituitary gland will send TSH out into your body to have your thyroid produce more T3 and T4. to do this it needs iodine. The Low Iodine diet limits the amount of iodine in your body so when they give you the radioactive Iodine the thyroid cancer tissue takes up the iodine so it will kill the bad stuff.
It is scary it is confusing and you are going to need support.
Remember the only stupid question is the one you didn’t ask. So ask all your questions.
Craig
Craig,
Thank you for responding to my post, it is greatly appreciated. I am currently taking Levothyroxin everyday, but I won't know anything about my treatment until I see the specialist next week at the cancer center. I have not started any treatment yet. Just got the results of my scan yesterday. When you talk about the thyroid producting more T3 and T4...well I don't have any of my thyroid left, the surgeon took all of it out last year. So basically my body is living off of the synthetic hormone I take daily now. I am trying to learn as much about this as I possibly can, and yes, I am scared. I received two of the Thyrogen shots a few days before the scan was performed and the hospital did run into a problem with getting the last shot. I am at a loss as to why this is soooo hard to obtain from phramaceutical companies. When I start the treatments, they have to give me something to keep my TSH level up, right? I think this bothers me more than anything else.
I greatly appreciate your rapid response to my post and I will definitely check out the website you mentioned. I have a massive amount of questions for the doctor when I go next week. He will be tired of looking at me before all is said and done.
Thanks again,
Samantha
a.k.a KYGirl710 -
same hereKYGirl71 said:wow
Craig,
Thank you for responding to my post, it is greatly appreciated. I am currently taking Levothyroxin everyday, but I won't know anything about my treatment until I see the specialist next week at the cancer center. I have not started any treatment yet. Just got the results of my scan yesterday. When you talk about the thyroid producting more T3 and T4...well I don't have any of my thyroid left, the surgeon took all of it out last year. So basically my body is living off of the synthetic hormone I take daily now. I am trying to learn as much about this as I possibly can, and yes, I am scared. I received two of the Thyrogen shots a few days before the scan was performed and the hospital did run into a problem with getting the last shot. I am at a loss as to why this is soooo hard to obtain from phramaceutical companies. When I start the treatments, they have to give me something to keep my TSH level up, right? I think this bothers me more than anything else.
I greatly appreciate your rapid response to my post and I will definitely check out the website you mentioned. I have a massive amount of questions for the doctor when I go next week. He will be tired of looking at me before all is said and done.
Thanks again,
Samantha
a.k.a KYGirl71
Hi Samantha
I am also on thyroid replacement
Synthroid is synthetic T4
Cytomel is synthetic T3
T4 converts to T3 as needed normaly but for some people it dose not do it as well
I am on 200mcg synthroid and 25mcg cytomel a day.
there is only 1 pharmasudical company in the US allowed to make thyrogen and that is the Genzyme corperation.
as of 7/14/2011 (acording to the FDA website)
A limited supply of Thyrogen was released to the U.S. market in June. Due to unexpected delays in the release of three lots of Thyrogen, a stock-out is expected in July and will persist until these lots are released. Temporary shipment delays will then continue to occur for the remainder of 2011 and throughout 2012.
being this is a patented drug there are only a few companies world wide that product thryogen and in the us its only Genzyme. on the fda website you can find there number if you wish to complain.
you go on low iodine diet to make the iodine in your body reduce in level and with ...
The two ways to get your TSH levels up
Prefered way - Thyrogen shots 2-3 shots spaced 1 day apart.
Old way - stop takeing synthetic thyroid replacement. makeing you extremly hypothyredic and is a really nasty way to do it.
unfortunatly with the shortage of thyrogen on the market it is harder for hospitals to get it
oh and post the questions you have for your doc here as well we might be able to answer some and give you more questions... and after you see your doc you can post questions and answers so hopefully someone else can also get the info.
Craig0 -
Thank younasher said:same here
Hi Samantha
I am also on thyroid replacement
Synthroid is synthetic T4
Cytomel is synthetic T3
T4 converts to T3 as needed normaly but for some people it dose not do it as well
I am on 200mcg synthroid and 25mcg cytomel a day.
there is only 1 pharmasudical company in the US allowed to make thyrogen and that is the Genzyme corperation.
as of 7/14/2011 (acording to the FDA website)
A limited supply of Thyrogen was released to the U.S. market in June. Due to unexpected delays in the release of three lots of Thyrogen, a stock-out is expected in July and will persist until these lots are released. Temporary shipment delays will then continue to occur for the remainder of 2011 and throughout 2012.
being this is a patented drug there are only a few companies world wide that product thryogen and in the us its only Genzyme. on the fda website you can find there number if you wish to complain.
you go on low iodine diet to make the iodine in your body reduce in level and with ...
The two ways to get your TSH levels up
Prefered way - Thyrogen shots 2-3 shots spaced 1 day apart.
Old way - stop takeing synthetic thyroid replacement. makeing you extremly hypothyredic and is a really nasty way to do it.
unfortunatly with the shortage of thyrogen on the market it is harder for hospitals to get it
oh and post the questions you have for your doc here as well we might be able to answer some and give you more questions... and after you see your doc you can post questions and answers so hopefully someone else can also get the info.
Craig
Hi Craig,
You have been a huge help to me, I appreciate it greatly. Another question though: How long can 'we' go without the synthetic hormone before the really bad things start to happen to our bodies....before our bodies really start to shut down? Hope I'm not driving you crazy yet...!!
Samantha0 -
I have been crazy for yearsKYGirl71 said:Thank you
Hi Craig,
You have been a huge help to me, I appreciate it greatly. Another question though: How long can 'we' go without the synthetic hormone before the really bad things start to happen to our bodies....before our bodies really start to shut down? Hope I'm not driving you crazy yet...!!
Samantha
Dont worry about driving me crazy the only think i worry about is someone driveing me sane.
I dont know the exact number of days you could go without thyroid replacement
and it depends what you consider REALLY BAD and such
techincaly after your first missed dose your levels of T4 and T3 will slowly decrease in your body.
the first set of symptoms you will notice could include.
some of these not nessarly all
Poor muscle tone (muscle hypotonia)
Fatigue
Any form of menstrual irregularity and fertility problems
Hyperprolactinemia and galactorrhea
Elevated serum cholesterol
Cold intolerance, increased sensitivity to cold
Constipation
Rapid thoughts
Depression
Muscle cramps and joint pain
Thin, brittle fingernails
Coarse hair
Paleness
Decreased sweating
Dry, itchy skin
Weight gain and water retention
Bradycardia (low heart rate – fewer than sixty beats per minute)
as time goes on you will get more and more of these symptoms and they will get worse
Impaired memory
Impaired cognitive function (brain fog) and inattentiveness
Sluggish reflexes
Increased need for sleep
Irritability and mood instability
Decreased sense of taste and smell
the biological halflife of synthroid is 6-7 days
so in 6 days without synthroid you will be at 50%
at 12 days you will be at 25%
at 18 days 12.5%
at 24 days 6.25%
at 30 days 3.125%
at 36 days 1.5625%
at 42 days 0.78125%
for cytomel the halflife is about 2 days
so 2 days 50%
4 days 25%
6 days 12.5%
8 days 6.25%
10 days 3.125
12 days 1.5625%
14 days 0.78125%
after my thyroid surgery they took me of cytomel (i wasnt on synthroid just cytomel) for 14 days prior to RAI treatment. but back then i also had some thyroid tissue left in my body.
my 1 year scan they were able to do thyrogen shots so i dont know how long they take you off synthroid.
so the first few days shouldnt be too bad but as the time goes it gets worse and worse.
and that is why i recomend you prepair every meal you plan to have on your LID and refrigerate or freeze PRIOR to the start of it.
cause at the end you are probably going to be grumpy and iratated at everything very sleep and in a constant brain fog.
so to be honest probaly about a 3-4 weeks off synthroid before the world starts crashing down on you hard. but at 1 week you will probably think it is.0 -
Something to 'look' forward to.....nasher said:I have been crazy for years
Dont worry about driving me crazy the only think i worry about is someone driveing me sane.
I dont know the exact number of days you could go without thyroid replacement
and it depends what you consider REALLY BAD and such
techincaly after your first missed dose your levels of T4 and T3 will slowly decrease in your body.
the first set of symptoms you will notice could include.
some of these not nessarly all
Poor muscle tone (muscle hypotonia)
Fatigue
Any form of menstrual irregularity and fertility problems
Hyperprolactinemia and galactorrhea
Elevated serum cholesterol
Cold intolerance, increased sensitivity to cold
Constipation
Rapid thoughts
Depression
Muscle cramps and joint pain
Thin, brittle fingernails
Coarse hair
Paleness
Decreased sweating
Dry, itchy skin
Weight gain and water retention
Bradycardia (low heart rate – fewer than sixty beats per minute)
as time goes on you will get more and more of these symptoms and they will get worse
Impaired memory
Impaired cognitive function (brain fog) and inattentiveness
Sluggish reflexes
Increased need for sleep
Irritability and mood instability
Decreased sense of taste and smell
the biological halflife of synthroid is 6-7 days
so in 6 days without synthroid you will be at 50%
at 12 days you will be at 25%
at 18 days 12.5%
at 24 days 6.25%
at 30 days 3.125%
at 36 days 1.5625%
at 42 days 0.78125%
for cytomel the halflife is about 2 days
so 2 days 50%
4 days 25%
6 days 12.5%
8 days 6.25%
10 days 3.125
12 days 1.5625%
14 days 0.78125%
after my thyroid surgery they took me of cytomel (i wasnt on synthroid just cytomel) for 14 days prior to RAI treatment. but back then i also had some thyroid tissue left in my body.
my 1 year scan they were able to do thyrogen shots so i dont know how long they take you off synthroid.
so the first few days shouldnt be too bad but as the time goes it gets worse and worse.
and that is why i recomend you prepair every meal you plan to have on your LID and refrigerate or freeze PRIOR to the start of it.
cause at the end you are probably going to be grumpy and iratated at everything very sleep and in a constant brain fog.
so to be honest probaly about a 3-4 weeks off synthroid before the world starts crashing down on you hard. but at 1 week you will probably think it is.
Well I am already irritable and grumpy, I suffer from depression anyway (and have for many, many years), I am bipolar, stay tired, and my memory already sucks bad enough now.....it just gets better and better and by the time everything is said and done, I will prolly be living by myself (even the dog will want to move out)! I am making light of the situation now cuz that's all I know how to do without crying...crying definitely isn't going to help, that's for sure.
I have been having these really bad dizzy spells like the last month or so....thought it was all the medicine I was on and so I quit them trying to figure out which one it was....I'm still dizzy (some days worse than others) and some spells are so bad that I am nauseous and have to hold on to things to keep from falling in the floor or landing flat on my face....my regular doctor won't listen to me, apparently she thinks I make things up, I don't know, just wish I could stand up for a minute without feeling like my head is going in circles while the rest of me stands still.....this is very frustrating and I don't know what could be causing it. I thought maybe vertigo, looked up symptoms on internet, but I know you shouldn't self-diagnose using the internet...don't really know what to do. I was told that I would still be able to work when going through this treatment, but with some of the symptoms you mentioned with just being off the synthroid....I am not sure I will physically be able to do this.
I am suppost to be getting a new job next week working at the detention center and there is no way in Hades that I need to be around inmates if I am weak and fatigued....when it rains it poors apparently.
Sorry, had a venting spell....won't happen again.
Thank you so much for your time and your posts, you have no idea what it means to me rightn now.0 -
VentingKYGirl71 said:Something to 'look' forward to.....
Well I am already irritable and grumpy, I suffer from depression anyway (and have for many, many years), I am bipolar, stay tired, and my memory already sucks bad enough now.....it just gets better and better and by the time everything is said and done, I will prolly be living by myself (even the dog will want to move out)! I am making light of the situation now cuz that's all I know how to do without crying...crying definitely isn't going to help, that's for sure.
I have been having these really bad dizzy spells like the last month or so....thought it was all the medicine I was on and so I quit them trying to figure out which one it was....I'm still dizzy (some days worse than others) and some spells are so bad that I am nauseous and have to hold on to things to keep from falling in the floor or landing flat on my face....my regular doctor won't listen to me, apparently she thinks I make things up, I don't know, just wish I could stand up for a minute without feeling like my head is going in circles while the rest of me stands still.....this is very frustrating and I don't know what could be causing it. I thought maybe vertigo, looked up symptoms on internet, but I know you shouldn't self-diagnose using the internet...don't really know what to do. I was told that I would still be able to work when going through this treatment, but with some of the symptoms you mentioned with just being off the synthroid....I am not sure I will physically be able to do this.
I am suppost to be getting a new job next week working at the detention center and there is no way in Hades that I need to be around inmates if I am weak and fatigued....when it rains it poors apparently.
Sorry, had a venting spell....won't happen again.
Thank you so much for your time and your posts, you have no idea what it means to me rightn now.
FYI, you are allowed to vent here. That's why we are here. Let it roll girl!
I feel for you and what you are going through. I had my TT and my Endo opted me out of RAI. I had recurrence within six months. I knew the cancer was back well before that point however. I had the signs that were apparent. I found out after my second surgery that I had a B-RAF mutation gene. Don't know if you have read any of the posts on this, but if you have another surgery, I would ask for this test to be done on your tissue.
My question is this. Where is the cancer if it's not in your lymph nodes and why are they not removing it before they give you RAI? Seems like they would remove it before trying to kill the remaining thyroid tissue. RAI doesn't really kill cancerous tumors, only small cancer cells and remaining thyroid tissue. I would ask about this.
I am keeping you in my thoughts and prayers along with everyone on this site. We are all survivors thus far and hopefully we will continue.
Blessings,
Julie-SunnyAZ0 -
something else not to look forward toKYGirl71 said:Something to 'look' forward to.....
Well I am already irritable and grumpy, I suffer from depression anyway (and have for many, many years), I am bipolar, stay tired, and my memory already sucks bad enough now.....it just gets better and better and by the time everything is said and done, I will prolly be living by myself (even the dog will want to move out)! I am making light of the situation now cuz that's all I know how to do without crying...crying definitely isn't going to help, that's for sure.
I have been having these really bad dizzy spells like the last month or so....thought it was all the medicine I was on and so I quit them trying to figure out which one it was....I'm still dizzy (some days worse than others) and some spells are so bad that I am nauseous and have to hold on to things to keep from falling in the floor or landing flat on my face....my regular doctor won't listen to me, apparently she thinks I make things up, I don't know, just wish I could stand up for a minute without feeling like my head is going in circles while the rest of me stands still.....this is very frustrating and I don't know what could be causing it. I thought maybe vertigo, looked up symptoms on internet, but I know you shouldn't self-diagnose using the internet...don't really know what to do. I was told that I would still be able to work when going through this treatment, but with some of the symptoms you mentioned with just being off the synthroid....I am not sure I will physically be able to do this.
I am suppost to be getting a new job next week working at the detention center and there is no way in Hades that I need to be around inmates if I am weak and fatigued....when it rains it poors apparently.
Sorry, had a venting spell....won't happen again.
Thank you so much for your time and your posts, you have no idea what it means to me rightn now.
Um well ok
Something else not to look forward to you might be developing Ménière’s syndrome
----
Ménière’s Syndrome and Ménière’s Disease
The terms Ménière’s disease and Ménière’s syndrome are sometimes used interchangeably, but they are not the same disorder even though both involve the inner ear apparatus. Ménière’s disease develops due to idiopathic (or unknown) causes, while Ménière’s syndrome is secondary to other diseases such as inner ear inflammation caused by syphilis, thyroid disease, or head trauma. Of the two, the most common is idiopathic Ménière’s disease.
Ménière’s of either variety is recognized by a classic triad of symptoms: vertigo; low-frequency, fluctuating hearing loss; and tinnitus (ringing in the ears) (da Costa SS et al 2002). Also, the condition is characterized by a condition known as endolymphatic hydrops, or increased hydraulic pressure in the inner ear's endolymphatic system. Although researchers have long suspected that endolymphatic hydrops was the underlying cause of the symptoms of Ménière’s disease, newer studies have called into question an even deeper cause. According to the most recent research, the endolymphatic hydrops in Ménière’s disease may be caused by neurotoxicity and progressive nerve damage in the cochlear nerve in the ear, and the increased pressure is a result, rather than a cause (Megerian CA 2005; Semaan MT et al 2005). Some early research has suggested that the nerve cell toxicity is mediated by nitric oxide, which is an important mediator in the inflammatory process. This suggests that agents that block nitric oxide may someday be important in the treatment of Ménière’s (Megerian CA 2005; Takumida M et al 2001).
In the meantime, while researchers are still pursuing these findings, other treatments may come to the forefront. For instance, because people with Ménière’s disease have been shown to have characteristic abnormalities in their inner ear, and an elevated level of free radicals (Raponi G et al 2003), free radical scavengers may be of benefit in treating Ménière’s.
People who have Ménière’s may experience attacks of vertigo that last 1 to 8 hours. These attacks (and the accompanying tinnitus) can be severe. There may also be an aura (such as a sensation of seeing lights or smelling odors). These symptoms may last an indefinite period. In the worst cases, hearing loss is permanent (de Sousa LC et al 2002).
----
Sometimes it can happen with thyroid disease... um check....
As a vertigo sufferer myself I have done a lot of the research. The docs say it’s all in my head... ok ok in my ears and eyes and vestibular system but heck all of those are in my head.
It took me about 3 months to convince them I had vertigo issues (use "DIZZY SPELLS" until they tell you vertigo)
Oh and PLEASE vent... if you read mine and Julie’s posts you will notice on occasion that we vent a little also.. its needed and helpful.
Oh and tell the doctors you’re not internet self diagnosing you are using the internet to figure out how to explain the symptoms to the doctor and better come up with your questions about your medical conditions.
a lot of times when i search the internet i either come up with a checklist of things it could be and can determine it is not over 1/2 of them prior to talking to the doctor. that way when the doctor says well maybe its.".." you can respond well no it can’t be because ",,,"
Craig0 -
Answer to ur ?sunnyaz said:Venting
FYI, you are allowed to vent here. That's why we are here. Let it roll girl!
I feel for you and what you are going through. I had my TT and my Endo opted me out of RAI. I had recurrence within six months. I knew the cancer was back well before that point however. I had the signs that were apparent. I found out after my second surgery that I had a B-RAF mutation gene. Don't know if you have read any of the posts on this, but if you have another surgery, I would ask for this test to be done on your tissue.
My question is this. Where is the cancer if it's not in your lymph nodes and why are they not removing it before they give you RAI? Seems like they would remove it before trying to kill the remaining thyroid tissue. RAI doesn't really kill cancerous tumors, only small cancer cells and remaining thyroid tissue. I would ask about this.
I am keeping you in my thoughts and prayers along with everyone on this site. We are all survivors thus far and hopefully we will continue.
Blessings,
Julie-SunnyAZ
Hi Julie,
From my understanding there is only cancerous thyroid tissue left from the surgery (a year ago) and this is why I am having to have the RAI treatment. I am really glad that you brought this to my attention, because I absolutely no NOTHING about what is going right now. I knew before my surgery that there was no guarantee that he would be able to remove all the thyroid tissue. My thing is why wasn't a PET scan done at least 6 months after surgery instead of waiting a year to do one. I mean I am not the pretties crayon in the box, but I'm not dumnb either, know what I mean. This has given this cancerous tissue a year to grow!!
I have my first appointment at the cancer center on Thursday and I intend to bombard the doctor with a million questions! I appreciate all of your all's posts because like I said before, I have no idea what is going on. My surgeon told me that the uptake was either from cancerous tissue or another cancerous tumor, he couldn't tell me which....
Thanks again for you post and for letting me vent, lol
Samantha
aka KYGirl0 -
Vertigo.....nasher said:something else not to look forward to
Um well ok
Something else not to look forward to you might be developing Ménière’s syndrome
----
Ménière’s Syndrome and Ménière’s Disease
The terms Ménière’s disease and Ménière’s syndrome are sometimes used interchangeably, but they are not the same disorder even though both involve the inner ear apparatus. Ménière’s disease develops due to idiopathic (or unknown) causes, while Ménière’s syndrome is secondary to other diseases such as inner ear inflammation caused by syphilis, thyroid disease, or head trauma. Of the two, the most common is idiopathic Ménière’s disease.
Ménière’s of either variety is recognized by a classic triad of symptoms: vertigo; low-frequency, fluctuating hearing loss; and tinnitus (ringing in the ears) (da Costa SS et al 2002). Also, the condition is characterized by a condition known as endolymphatic hydrops, or increased hydraulic pressure in the inner ear's endolymphatic system. Although researchers have long suspected that endolymphatic hydrops was the underlying cause of the symptoms of Ménière’s disease, newer studies have called into question an even deeper cause. According to the most recent research, the endolymphatic hydrops in Ménière’s disease may be caused by neurotoxicity and progressive nerve damage in the cochlear nerve in the ear, and the increased pressure is a result, rather than a cause (Megerian CA 2005; Semaan MT et al 2005). Some early research has suggested that the nerve cell toxicity is mediated by nitric oxide, which is an important mediator in the inflammatory process. This suggests that agents that block nitric oxide may someday be important in the treatment of Ménière’s (Megerian CA 2005; Takumida M et al 2001).
In the meantime, while researchers are still pursuing these findings, other treatments may come to the forefront. For instance, because people with Ménière’s disease have been shown to have characteristic abnormalities in their inner ear, and an elevated level of free radicals (Raponi G et al 2003), free radical scavengers may be of benefit in treating Ménière’s.
People who have Ménière’s may experience attacks of vertigo that last 1 to 8 hours. These attacks (and the accompanying tinnitus) can be severe. There may also be an aura (such as a sensation of seeing lights or smelling odors). These symptoms may last an indefinite period. In the worst cases, hearing loss is permanent (de Sousa LC et al 2002).
----
Sometimes it can happen with thyroid disease... um check....
As a vertigo sufferer myself I have done a lot of the research. The docs say it’s all in my head... ok ok in my ears and eyes and vestibular system but heck all of those are in my head.
It took me about 3 months to convince them I had vertigo issues (use "DIZZY SPELLS" until they tell you vertigo)
Oh and PLEASE vent... if you read mine and Julie’s posts you will notice on occasion that we vent a little also.. its needed and helpful.
Oh and tell the doctors you’re not internet self diagnosing you are using the internet to figure out how to explain the symptoms to the doctor and better come up with your questions about your medical conditions.
a lot of times when i search the internet i either come up with a checklist of things it could be and can determine it is not over 1/2 of them prior to talking to the doctor. that way when the doctor says well maybe its.".." you can respond well no it can’t be because ",,,"
Craig
Hi Craig,
These 'dizzy spells' that I have been having have been going on for a couple months now and they continue to get worse. Since I am a crap load of medicine, I took myself off all of my meds (except thyroid) to try to determine if it was indeed a medication I was taking. Bad idea I know, but can't seem to get a doctor to listen to what I am telling them.... The topomax is notorious for dizzyness side effects, that being said and having been off all my meds (lithium, cymbalta, mobic, and the topomax) the spells are still very frequent and some are worse than others. Now I have gradually put myself back on my meds...slowly, so that I don't become manic, depressed, or both. This has been fun...let me tell you! Being off of the antidepressants has really made me...uhmm....more opinionated than normal, lol, and while I have never had patience of any kind, it's even worse now. And we won't even talk about the irritablility and mood swings going from 0 to 60 in a nanosecond!!
I have been told the same thing about things being all in my head....well this is the problem, they are in my head....and they are driving me crazy....I am not a hypochondriac and I do not make things up for attention or any other reason. I just want the dang dizzy spells to stop or at least not be so aggressive. They make me so nauseous and it becomes debilitating at times.
On the the subject of Meniere's disease...my aunt was diagnosed with this and I am just wondering if this is something that could be genetic??? I have not been trying to self diagnose, only looking for ways to explain to the doctor the exact description of my symptoms, because some of them I can not put into words to explain it. I am just so frustrated righ now....
Thanks for your posts Craig, they really are helping me a lot,
Samantha0 -
never think of a good subject lineKYGirl71 said:Vertigo.....
Hi Craig,
These 'dizzy spells' that I have been having have been going on for a couple months now and they continue to get worse. Since I am a crap load of medicine, I took myself off all of my meds (except thyroid) to try to determine if it was indeed a medication I was taking. Bad idea I know, but can't seem to get a doctor to listen to what I am telling them.... The topomax is notorious for dizzyness side effects, that being said and having been off all my meds (lithium, cymbalta, mobic, and the topomax) the spells are still very frequent and some are worse than others. Now I have gradually put myself back on my meds...slowly, so that I don't become manic, depressed, or both. This has been fun...let me tell you! Being off of the antidepressants has really made me...uhmm....more opinionated than normal, lol, and while I have never had patience of any kind, it's even worse now. And we won't even talk about the irritablility and mood swings going from 0 to 60 in a nanosecond!!
I have been told the same thing about things being all in my head....well this is the problem, they are in my head....and they are driving me crazy....I am not a hypochondriac and I do not make things up for attention or any other reason. I just want the dang dizzy spells to stop or at least not be so aggressive. They make me so nauseous and it becomes debilitating at times.
On the the subject of Meniere's disease...my aunt was diagnosed with this and I am just wondering if this is something that could be genetic??? I have not been trying to self diagnose, only looking for ways to explain to the doctor the exact description of my symptoms, because some of them I can not put into words to explain it. I am just so frustrated righ now....
Thanks for your posts Craig, they really are helping me a lot,
Samantha
1st NEVER go off an anti-depressant without doctor’s orders.
meniere's disease... I don’t know if it can be genetic or not but they did ask me if anyone in my family had meniere's so I am guessing it is.
my wife kept thinking i was starting to become a hypochondriac when i kept telling her it sounded to me like I had meniere's.... but she told me over the past month when she is talking about my dizzy issues with friends and doc's and such that they normally bring up” humm it sounds like meniere's disease to me”... so i guess she finally realized that I was actually diagnostic and not hypochondriac about it.
maybe try this approach... tell the doctor "You were having a chat with you aunt... and were talking about your dizzy spells and after she asked you a lot of questions she mentioned that it sounded like what she has and she was diagnosed with meniere's in ..."
You can try
Adding ginger to your diet
Adding Vitamin B6
Take a decongestant
Cutting back on salt
Stopping smoking if you smoke or not hang around smokers
Reducing caffeine, alcohol
Make a journal about your dizziness. When did it happen, what were you doing, how long, what symptoms?
For instance at:
6:35 this morning when getting out of my car someone car alarm went off, got light headache, pounding in the ears, slight rotational vision, dry mouth nausea, difficulty walking. Lasted about 2 min then just back to fullness in ears and light pulsation in ears and slight dizziness. Only taken synthroid in the morning. no breakfast gabapentin last taken 9pm. Meclizine longer than 48+ hours.
If it happens within an hour or so of meals list what you ate (especially if salty).
The reason i list gabapentin and Meclizine is those are my 2 vertigo relief meds the gaba I take 3 times a day and the Meclizine only if i get BAD dizziness/nausea.
---
RAI kills everything a little.. It is real good at getting small amounts of thyroid tissue and small amounts of thyroid cancer cells. If the cancer cells are large enough to be found by external scanning it is normally better to remove them prior to RAI.. Unless their intention is to shrink the tumor/growth before surgery.
When they remove your thyroid they take as much as possible without damaging other things in your neck. if your thyroid is wrapped around your vocal cords or parathyroid’s or whatever they may spend a bit longer trying to get as much as possible but they don’t want to paralyze your vocal cords or put your parathyroid’s into shock or... so there is normally a bit of thyroid tissue left in this tissue there may or may not be cancer.
I saw you also mentioned you were going to bombard your doctor with a lot of questions... ask them here also we might be able to answer some or give you a better phrase to say or such or give you more questions.
I have also found out it helps if you have a lot of questions to type them out make a copy for you and your doctor and a spare for anyone else with you. so you can hand him/her the questions and then you can write down the answers. then come back here and post the answers and maybe we can come up with more questions for the next round so you get better informed.
Don’t worry about not being too up on things... think of it this way Dec 2 2009 I had to ask my ENT what a thyroid was, and where it was, and what it did, and what did she mean by goiter? I did not know what an endocrinologist was. I didn't understand how to read lab reports. And it took me till April 2010 to find this place. (after my thyroid was completely out and i was going towards the LID) I didn't have vertigo, and i was at the ENT to talk about the major loss of my hearing and the fact I setting up to go to surgery to replace the bones in my middle ear with tiny mechanical pistons so I could recover my hearing.
Oh and answering questions is one of the ways I educate myself as well as a stress relief for myself.
So go on and ask questions and vent that’s what this board is for.
Craig0 -
NEVER go off your antidepressants....nasher said:never think of a good subject line
1st NEVER go off an anti-depressant without doctor’s orders.
meniere's disease... I don’t know if it can be genetic or not but they did ask me if anyone in my family had meniere's so I am guessing it is.
my wife kept thinking i was starting to become a hypochondriac when i kept telling her it sounded to me like I had meniere's.... but she told me over the past month when she is talking about my dizzy issues with friends and doc's and such that they normally bring up” humm it sounds like meniere's disease to me”... so i guess she finally realized that I was actually diagnostic and not hypochondriac about it.
maybe try this approach... tell the doctor "You were having a chat with you aunt... and were talking about your dizzy spells and after she asked you a lot of questions she mentioned that it sounded like what she has and she was diagnosed with meniere's in ..."
You can try
Adding ginger to your diet
Adding Vitamin B6
Take a decongestant
Cutting back on salt
Stopping smoking if you smoke or not hang around smokers
Reducing caffeine, alcohol
Make a journal about your dizziness. When did it happen, what were you doing, how long, what symptoms?
For instance at:
6:35 this morning when getting out of my car someone car alarm went off, got light headache, pounding in the ears, slight rotational vision, dry mouth nausea, difficulty walking. Lasted about 2 min then just back to fullness in ears and light pulsation in ears and slight dizziness. Only taken synthroid in the morning. no breakfast gabapentin last taken 9pm. Meclizine longer than 48+ hours.
If it happens within an hour or so of meals list what you ate (especially if salty).
The reason i list gabapentin and Meclizine is those are my 2 vertigo relief meds the gaba I take 3 times a day and the Meclizine only if i get BAD dizziness/nausea.
---
RAI kills everything a little.. It is real good at getting small amounts of thyroid tissue and small amounts of thyroid cancer cells. If the cancer cells are large enough to be found by external scanning it is normally better to remove them prior to RAI.. Unless their intention is to shrink the tumor/growth before surgery.
When they remove your thyroid they take as much as possible without damaging other things in your neck. if your thyroid is wrapped around your vocal cords or parathyroid’s or whatever they may spend a bit longer trying to get as much as possible but they don’t want to paralyze your vocal cords or put your parathyroid’s into shock or... so there is normally a bit of thyroid tissue left in this tissue there may or may not be cancer.
I saw you also mentioned you were going to bombard your doctor with a lot of questions... ask them here also we might be able to answer some or give you a better phrase to say or such or give you more questions.
I have also found out it helps if you have a lot of questions to type them out make a copy for you and your doctor and a spare for anyone else with you. so you can hand him/her the questions and then you can write down the answers. then come back here and post the answers and maybe we can come up with more questions for the next round so you get better informed.
Don’t worry about not being too up on things... think of it this way Dec 2 2009 I had to ask my ENT what a thyroid was, and where it was, and what it did, and what did she mean by goiter? I did not know what an endocrinologist was. I didn't understand how to read lab reports. And it took me till April 2010 to find this place. (after my thyroid was completely out and i was going towards the LID) I didn't have vertigo, and i was at the ENT to talk about the major loss of my hearing and the fact I setting up to go to surgery to replace the bones in my middle ear with tiny mechanical pistons so I could recover my hearing.
Oh and answering questions is one of the ways I educate myself as well as a stress relief for myself.
So go on and ask questions and vent that’s what this board is for.
Craig
Hey Craig,
I know, I know....going off my anti-depressants cold turkey is an extremely bad idea, however I was just trying to figure out if maybe one of the meds was making me dizzy. Another symptom I have NEVER had before is getting queasy at the slightest thing, example: raw chicken, taking medicine, etc. and sometimes even throwing up some ( sorry for the graphic detail). This has never happened to me until just recently and no, before you ask, I'm not pregnant and it would be the immaculate conception if I was, due to a total hysterectomy a couple of years ago, not that you needed all that info...just sayin. I have S O M A N Y new symptoms of things here lately I honestly think I am losing what is left of my mind. My family thinks I am becoming a hypochondriac.....but I swear I am NOT making these things up, I just can't get anyone to listen to me....nothing new there...but....
While I know that my TSH levels are where they need to be right now, I am still exhausted and short fused...A LOT! Yes, I work a full time job and have to be at work at 3am at least 5 days a week and usually work 9 hour days...all I want to do is sleep, sleep, sleep! I have NO energy at all whatsoever! I stay depressed, can't lose weight to save my life, and my family is not very understanding of why I want to sleep when I get home from work almost everyday. I am to the point of literally giving up.....I have come to the conclusion that maybe some of my sleeping is due to the depression, but surely not all of it. The only thing new that is causing more stress than normal is the fact that the cancer has returned and that I have no idea how the outcome will turn out. This site is really the only place I can come to and actually be listened to and vent...
Thanks again for all your help,
Samantha0 -
NEVER go off your antidepressants....nasher said:never think of a good subject line
1st NEVER go off an anti-depressant without doctor’s orders.
meniere's disease... I don’t know if it can be genetic or not but they did ask me if anyone in my family had meniere's so I am guessing it is.
my wife kept thinking i was starting to become a hypochondriac when i kept telling her it sounded to me like I had meniere's.... but she told me over the past month when she is talking about my dizzy issues with friends and doc's and such that they normally bring up” humm it sounds like meniere's disease to me”... so i guess she finally realized that I was actually diagnostic and not hypochondriac about it.
maybe try this approach... tell the doctor "You were having a chat with you aunt... and were talking about your dizzy spells and after she asked you a lot of questions she mentioned that it sounded like what she has and she was diagnosed with meniere's in ..."
You can try
Adding ginger to your diet
Adding Vitamin B6
Take a decongestant
Cutting back on salt
Stopping smoking if you smoke or not hang around smokers
Reducing caffeine, alcohol
Make a journal about your dizziness. When did it happen, what were you doing, how long, what symptoms?
For instance at:
6:35 this morning when getting out of my car someone car alarm went off, got light headache, pounding in the ears, slight rotational vision, dry mouth nausea, difficulty walking. Lasted about 2 min then just back to fullness in ears and light pulsation in ears and slight dizziness. Only taken synthroid in the morning. no breakfast gabapentin last taken 9pm. Meclizine longer than 48+ hours.
If it happens within an hour or so of meals list what you ate (especially if salty).
The reason i list gabapentin and Meclizine is those are my 2 vertigo relief meds the gaba I take 3 times a day and the Meclizine only if i get BAD dizziness/nausea.
---
RAI kills everything a little.. It is real good at getting small amounts of thyroid tissue and small amounts of thyroid cancer cells. If the cancer cells are large enough to be found by external scanning it is normally better to remove them prior to RAI.. Unless their intention is to shrink the tumor/growth before surgery.
When they remove your thyroid they take as much as possible without damaging other things in your neck. if your thyroid is wrapped around your vocal cords or parathyroid’s or whatever they may spend a bit longer trying to get as much as possible but they don’t want to paralyze your vocal cords or put your parathyroid’s into shock or... so there is normally a bit of thyroid tissue left in this tissue there may or may not be cancer.
I saw you also mentioned you were going to bombard your doctor with a lot of questions... ask them here also we might be able to answer some or give you a better phrase to say or such or give you more questions.
I have also found out it helps if you have a lot of questions to type them out make a copy for you and your doctor and a spare for anyone else with you. so you can hand him/her the questions and then you can write down the answers. then come back here and post the answers and maybe we can come up with more questions for the next round so you get better informed.
Don’t worry about not being too up on things... think of it this way Dec 2 2009 I had to ask my ENT what a thyroid was, and where it was, and what it did, and what did she mean by goiter? I did not know what an endocrinologist was. I didn't understand how to read lab reports. And it took me till April 2010 to find this place. (after my thyroid was completely out and i was going towards the LID) I didn't have vertigo, and i was at the ENT to talk about the major loss of my hearing and the fact I setting up to go to surgery to replace the bones in my middle ear with tiny mechanical pistons so I could recover my hearing.
Oh and answering questions is one of the ways I educate myself as well as a stress relief for myself.
So go on and ask questions and vent that’s what this board is for.
Craig
Hey Craig,
I know, I know....going off my anti-depressants cold turkey is an extremely bad idea, however I was just trying to figure out if maybe one of the meds was making me dizzy. Another symptom I have NEVER had before is getting queasy at the slightest thing, example: raw chicken, taking medicine, etc. and sometimes even throwing up some ( sorry for the graphic detail). This has never happened to me until just recently and no, before you ask, I'm not pregnant and it would be the immaculate conception if I was, due to a total hysterectomy a couple of years ago, not that you needed all that info...just sayin. I have S O M A N Y new symptoms of things here lately I honestly think I am losing what is left of my mind. My family thinks I am becoming a hypochondriac.....but I swear I am NOT making these things up, I just can't get anyone to listen to me....nothing new there...but....
While I know that my TSH levels are where they need to be right now, I am still exhausted and short fused...A LOT! Yes, I work a full time job and have to be at work at 3am at least 5 days a week and usually work 9 hour days...all I want to do is sleep, sleep, sleep! I have NO energy at all whatsoever! I stay depressed, can't lose weight to save my life, and my family is not very understanding of why I want to sleep when I get home from work almost everyday. I am to the point of literally giving up.....I have come to the conclusion that maybe some of my sleeping is due to the depression, but surely not all of it. The only thing new that is causing more stress than normal is the fact that the cancer has returned and that I have no idea how the outcome will turn out. This site is really the only place I can come to and actually be listened to and vent...
Thanks again for all your help,
Samantha0 -
the good place to ventKYGirl71 said:NEVER go off your antidepressants....
Hey Craig,
I know, I know....going off my anti-depressants cold turkey is an extremely bad idea, however I was just trying to figure out if maybe one of the meds was making me dizzy. Another symptom I have NEVER had before is getting queasy at the slightest thing, example: raw chicken, taking medicine, etc. and sometimes even throwing up some ( sorry for the graphic detail). This has never happened to me until just recently and no, before you ask, I'm not pregnant and it would be the immaculate conception if I was, due to a total hysterectomy a couple of years ago, not that you needed all that info...just sayin. I have S O M A N Y new symptoms of things here lately I honestly think I am losing what is left of my mind. My family thinks I am becoming a hypochondriac.....but I swear I am NOT making these things up, I just can't get anyone to listen to me....nothing new there...but....
While I know that my TSH levels are where they need to be right now, I am still exhausted and short fused...A LOT! Yes, I work a full time job and have to be at work at 3am at least 5 days a week and usually work 9 hour days...all I want to do is sleep, sleep, sleep! I have NO energy at all whatsoever! I stay depressed, can't lose weight to save my life, and my family is not very understanding of why I want to sleep when I get home from work almost everyday. I am to the point of literally giving up.....I have come to the conclusion that maybe some of my sleeping is due to the depression, but surely not all of it. The only thing new that is causing more stress than normal is the fact that the cancer has returned and that I have no idea how the outcome will turn out. This site is really the only place I can come to and actually be listened to and vent...
Thanks again for all your help,
Samantha
yes its nice you can vent here and not worry about them calling you a hypochondriac or searching for a "pity party"
if you can’t get them to check for vertigo you probably won’t be able to get this but in about a month I am going through the "scratch test" for over 300 different allergens to find out if allergy suppression would work to help relieve my vertigo. [Allergy suppression is going in for a shot a week]
Right now I feel useless all the time I can’t do 1/5 of what I used to be able to do i sleep all the time... I can’t stay up and watch a TV show without falling asleep.
I understand the 3am... I am at work by 5 normally so I go to sleep at 9pm (when my friends want to do things) and I used to be on a rotating shift but that stopped with oh and you have cancer, but it’s the “Good Kind”
I have finally lost 2 pounds after almost a year of honestly trying. The doctors have been mentioning Bariatric weightless surgery as probably the only way I will lose weight. BUT they want to take care of this vertigo first that they can’t figure out after over 6 specialist and multiple meds and....
Every med I take I think (except synthroid and Cytomel) says may increase drowsiness and may cause dizziness (even the vertigo meds they have me on). Well synthroid and Cytomel have some vertigo symptoms on side effects but...
I tend to want to snap at people for no reason as well
the main thing that is causing me stress right now (beyond the vertigo issues) is I am retiring from the military REAL SOON so my health care shifts and all my doctors shift and... naww no stress there... oh yea and i will probably have to find some work to supplement my retirement pay's.
But yes some of your sleep may be caused by your depression.. of corse most anti-depressant meds can cause sleepiness and dizziness and depression... (can’t win can ya)...
"I can’t have lost my mind I have it backed up on CD... somewhere" always loved that quote.
The thing I hate is when people who don’t know my back-story say things like.
"If you lose a little weight that will probably reduce your depression"
"Anyone can lose weight with a little effort"
"Maybe you should workout more” I work out 5 days a week for an hour plus take lots of short walks.
And people who know some of the story do things like
"it’s a good cancer"
"You got rid of cancer so let’s get some of that weight off"
And then I also get
"Maybe they need to adjust your meds"
I think the hardest one is when people say "they understand" but they don’t they are trying to say "I love you" or "I support you" but they don’t understand. Ok my wife understands a lot and my friend who has MS and multiple surgeries and… understands a lot but most don’t.
See we all need to vent now and then right Samantha.
Oh yes and yes they did adjust my meds they dubbed my anti depressant Celexa from 20-40mg/day
And they also adjusted the Gabapentin I am on for vertigo (its listed as an anti epilepsy drug go figure) they are still trying to find the correct dosage for me on that one.
my wife tries to understand my friends try to understand but i keep getting the feeling they are thinking I’m becoming a hypochondriac or hunting up for a "pity party"... I’m not.. I just want to be back to the point where.
I was overweight but 70 lbs lighter
I didn’t know what a thyroid was
I didn’t have vertigo
I took a multi- vitamin and maybe some fiber pills and that it.
I had energy
I thought 1 medical appointment a year was a pain.
I was losing my hearing but didn’t know they could fix it. (may be cause of vertigo)
I didn’t qualify for a handicap plate for neurological disorder
I didn't have high Blood Pressure
Now i just have to remember next time to get the extended warranty on my body instead of the one that expired when I turned 39... (Im almost 41 now)
oh and Samantha a lot of us get to vent when we get to answer your questions or other new members so the more questions the more relief we get and the more answers you get hopefully.
So what is your TSH level at right now?
Craig
edit added ----
oh and you said your on a crap load of meds here is what i am on
Synthroid 200mcg/day
cytomel 25 mcg/day
celeca 40 mg/day
meclizine (antivert) 25mg/3x a day as needed
valium if needed up to 2x a day (no driving 12 hours after)
Claritin EQ 10mg/day
Hydrochlorothiazide 50 mg/day
Triamterene 75 mg/day
Gapabentine 600mg/3x day (6 pills)
Vitimin D3 4000 Ui/day (4 pills)
Calcium 2000mg/day
and suppliments i take are
Vitimin C
Centrium Multivitimin
Flaxseed oil 6000 mg/day (6 pills)
garlic 1000mg/day (2 pills)
Ginger root 550mg/2x day
so yes i understand the comment about being on a ton of medicine.0 -
Hi SamanthaKYGirl71 said:NEVER go off your antidepressants....
Hey Craig,
I know, I know....going off my anti-depressants cold turkey is an extremely bad idea, however I was just trying to figure out if maybe one of the meds was making me dizzy. Another symptom I have NEVER had before is getting queasy at the slightest thing, example: raw chicken, taking medicine, etc. and sometimes even throwing up some ( sorry for the graphic detail). This has never happened to me until just recently and no, before you ask, I'm not pregnant and it would be the immaculate conception if I was, due to a total hysterectomy a couple of years ago, not that you needed all that info...just sayin. I have S O M A N Y new symptoms of things here lately I honestly think I am losing what is left of my mind. My family thinks I am becoming a hypochondriac.....but I swear I am NOT making these things up, I just can't get anyone to listen to me....nothing new there...but....
While I know that my TSH levels are where they need to be right now, I am still exhausted and short fused...A LOT! Yes, I work a full time job and have to be at work at 3am at least 5 days a week and usually work 9 hour days...all I want to do is sleep, sleep, sleep! I have NO energy at all whatsoever! I stay depressed, can't lose weight to save my life, and my family is not very understanding of why I want to sleep when I get home from work almost everyday. I am to the point of literally giving up.....I have come to the conclusion that maybe some of my sleeping is due to the depression, but surely not all of it. The only thing new that is causing more stress than normal is the fact that the cancer has returned and that I have no idea how the outcome will turn out. This site is really the only place I can come to and actually be listened to and vent...
Thanks again for all your help,
Samantha
So, yeah.... never want to go cold turkey on any medication that you had to titrate up. Most anti-depressants require titration, or in non-medical terms; graduation of dosage at small intervals over a period of time. You must also titrate down. At least now you know.
I personally can't take anti-depressants without worse side effects than the problem itself. Since my thyroid started going to hell in a hand basket in late 2008, I gained over sixty pounds in total. Some will get sick of hearing this but fifty pounds of this weight gain took place while I was trying to convince my PCP that something was wrong with my thyroid. I was athletic, working out twice a day including cardiovascular aerobics, running and kickboxing. I was 5 feet 4 inches tall and 138 lbs of solid muscle. Not many women, and some men would have dared to take me on in a match. I have lost some of the weight I gained but not what I had hoped to by now. In December when I went into my third surgery I weighed around 195 lbs. I am down to 167 lbs. I work out at least five days a week for about 3o minutes and I barely eat anything. I am tired all the time even with my TSH level at 0.02. Very hyperthyroid!
I have found that the exercise helps with my energy levels and depression if nothing else. Boosts the mood by producing endorphins. I work about nine to ten hours a day for three doctors that are complete tyrants. Well, actually only two of them are tyrants. The other one is just an overachiever and exhausts everyone in the office. I stay very busy so that keeps me awake at work, but once I get home I am so tired I can't wait for 9:00 to hit so I can go to bed. I am up at 5:00 am to take my Synthroid and then back to bed for about half an hour. I rarely fall back to sleep but it's worth a shot. My mind races thinking about what patients are coming in that day for what tests/procedures and everything on my plate. My job requires complete accuracy. There is no room for mistakes in medicine. My brain doesn't function like it used to and I recently made a mistake on a patient's prescription. My boss wrote me up for it. If I screw up too many times, I could loose my job and my certification. Sometimes I can't help but hope that would not be such a bad thing. Maybe a career change would do me a bit of good.
Craig mentioned his med's and supplements so I thought I would share mine with you too.
Meds
Synthroid 175 mcg daily
Omeprazole 40 mg daily (for Gastro Esophageal Reflux)
Diazepam 5-10 mg at night to help me sleep and chill out
Supplements
Gummie Vites multi vitamins two daily
Vitamin C 1000 mg daily
CoQ10 twice daily
Flaxseed Oil 1000 mg twice daily (brain food, also helps with depression)
Selenium 200 mcg daily (at night-not with Vit C- it's toxic together)(helps strengthen cells that RAI kills off in other parts of the body ie. breasts, uterus, prostate and more)
B-12 sublingual 6000 mcg daily (for energy)
You are not alone in your struggles. We are here for you. Keeping you in my thoughts and prayers.
Blessings,
Julie-SunnyAZ0 -
thanks for shareing your meds toosunnyaz said:Hi Samantha
So, yeah.... never want to go cold turkey on any medication that you had to titrate up. Most anti-depressants require titration, or in non-medical terms; graduation of dosage at small intervals over a period of time. You must also titrate down. At least now you know.
I personally can't take anti-depressants without worse side effects than the problem itself. Since my thyroid started going to hell in a hand basket in late 2008, I gained over sixty pounds in total. Some will get sick of hearing this but fifty pounds of this weight gain took place while I was trying to convince my PCP that something was wrong with my thyroid. I was athletic, working out twice a day including cardiovascular aerobics, running and kickboxing. I was 5 feet 4 inches tall and 138 lbs of solid muscle. Not many women, and some men would have dared to take me on in a match. I have lost some of the weight I gained but not what I had hoped to by now. In December when I went into my third surgery I weighed around 195 lbs. I am down to 167 lbs. I work out at least five days a week for about 3o minutes and I barely eat anything. I am tired all the time even with my TSH level at 0.02. Very hyperthyroid!
I have found that the exercise helps with my energy levels and depression if nothing else. Boosts the mood by producing endorphins. I work about nine to ten hours a day for three doctors that are complete tyrants. Well, actually only two of them are tyrants. The other one is just an overachiever and exhausts everyone in the office. I stay very busy so that keeps me awake at work, but once I get home I am so tired I can't wait for 9:00 to hit so I can go to bed. I am up at 5:00 am to take my Synthroid and then back to bed for about half an hour. I rarely fall back to sleep but it's worth a shot. My mind races thinking about what patients are coming in that day for what tests/procedures and everything on my plate. My job requires complete accuracy. There is no room for mistakes in medicine. My brain doesn't function like it used to and I recently made a mistake on a patient's prescription. My boss wrote me up for it. If I screw up too many times, I could loose my job and my certification. Sometimes I can't help but hope that would not be such a bad thing. Maybe a career change would do me a bit of good.
Craig mentioned his med's and supplements so I thought I would share mine with you too.
Meds
Synthroid 175 mcg daily
Omeprazole 40 mg daily (for Gastro Esophageal Reflux)
Diazepam 5-10 mg at night to help me sleep and chill out
Supplements
Gummie Vites multi vitamins two daily
Vitamin C 1000 mg daily
CoQ10 twice daily
Flaxseed Oil 1000 mg twice daily (brain food, also helps with depression)
Selenium 200 mcg daily (at night-not with Vit C- it's toxic together)(helps strengthen cells that RAI kills off in other parts of the body ie. breasts, uterus, prostate and more)
B-12 sublingual 6000 mcg daily (for energy)
You are not alone in your struggles. We are here for you. Keeping you in my thoughts and prayers.
Blessings,
Julie-SunnyAZ
Always nice to see what others are on
I have always heard CoQ10 was something I should supplement but just thinking of adding another anything....
Also that vitamin B-12 sublingual sounds a bit high but if it helps i might think of a smaller sublingual to try.
suppressed they have you on valium (Diazepam) to chill out... when the vertigo gets too bad for meclizine and gabapentin to control at the 5mg level...
Oh I will admit I take my nighttime meds sometimes a bit early and go to bed 7:30-8pm.
The alarm clock(s) start going off at 3:45-4 am (yes i use multiple) I also have timers setup so i know if I’m running slow (or late) in the morning try to be out the door around 4:30 and to work around 5 depending on traffic... at work I have time then to set things up and have breakfast around 6 with my morning meds (synthroid is the 3:45 alarm).
Yea i split my flaxseed oil into 2-3 x a day as well (it also lowers bad cholesterol)
Curious I have seen some articles saying vitamin c may cause low absorption of selenium but nothing saying it’s toxic together. In fact I think I may check my selenium levels and see if supplementation may help there.
yes exercise helps wake me up and is wonderful for depression but sometimes causes vertigo if I’m not careful so if I get vertigo I just messed up my day VS energizing myself. (Sometimes you just can’t win)
I understand the need for accuracy I am part of the training team for QA on submarines... if you mess up with something there you may cause the loss of the entire crew and the submarine. So I end up double and triple checking things sometimes just to make sure i didn’t forget to check something
I have also seen mistakes in medicine... And some of those cause multimillion dollar law suits and sever medical conditions or death.
Edited forgot to spell check AGAIN…
Craig0 -
OH....but I didn't list ALL of my MEDS...nasher said:thanks for shareing your meds too
Always nice to see what others are on
I have always heard CoQ10 was something I should supplement but just thinking of adding another anything....
Also that vitamin B-12 sublingual sounds a bit high but if it helps i might think of a smaller sublingual to try.
suppressed they have you on valium (Diazepam) to chill out... when the vertigo gets too bad for meclizine and gabapentin to control at the 5mg level...
Oh I will admit I take my nighttime meds sometimes a bit early and go to bed 7:30-8pm.
The alarm clock(s) start going off at 3:45-4 am (yes i use multiple) I also have timers setup so i know if I’m running slow (or late) in the morning try to be out the door around 4:30 and to work around 5 depending on traffic... at work I have time then to set things up and have breakfast around 6 with my morning meds (synthroid is the 3:45 alarm).
Yea i split my flaxseed oil into 2-3 x a day as well (it also lowers bad cholesterol)
Curious I have seen some articles saying vitamin c may cause low absorption of selenium but nothing saying it’s toxic together. In fact I think I may check my selenium levels and see if supplementation may help there.
yes exercise helps wake me up and is wonderful for depression but sometimes causes vertigo if I’m not careful so if I get vertigo I just messed up my day VS energizing myself. (Sometimes you just can’t win)
I understand the need for accuracy I am part of the training team for QA on submarines... if you mess up with something there you may cause the loss of the entire crew and the submarine. So I end up double and triple checking things sometimes just to make sure i didn’t forget to check something
I have also seen mistakes in medicine... And some of those cause multimillion dollar law suits and sever medical conditions or death.
Edited forgot to spell check AGAIN…
Craig
I honestly get so tired of taking a handful of pills everyday/night....I'm not lazy, I just get into that BiPolar moment of...do I really need these, I feel fine....
No one could possibly understand what a person goes through mentally/physically unless they have ACTUALLY been through it themselves!! I know, and will proudly admit, that I am screwed up in the head and now that I am a month away from 40, obvioulsly screwed up in the body as well. It's just been a down hill slide since I was 37....kind of like fix one thing and something else breaks!! I absolutely REFUSE to walk an hour everyday after working my rear off for 9-10 hours, it's just not happenin'!! I can not stand for my family to tell me that I need to exercise when they can't see their damn toes either!! Infuriates me to no end. I'm like if you wana walk an hour...have at it!! I feel isolated and completely alone with everything that is going on with me, my family just does not understand at all. I just quit talking about it, it does no good anyway....(by family, I mean husband, daughter, stepson)! Apparently, I am just lazy and reclusive. Okay...I will give them reclusive, but I AM NOT lazy. I just really want to curl up in a ball and roll under a rock, fall in a cave, and never be found so I don't have to come out...EVER! Essentially....I am mad at the world and most of the people in it...why? Heck if I know!
My meds include:
Alprazolam(Xanax) .5mg taken as needed for sleep/nerves...mostly taken for nerves when I do take it.
Fiorecet 325-40TAB taken as needed for migraines.
Cyclobenzapr 10mg taken 3x daily for muscle spasms
Cymbalta 60mg 1 nightly for depression
Levothyroxin 125mcg and 112mcg, alternating doses everyday
Lithium Carbonate 300mg taken 3x daily (was just increased b/c of low lithium level) used for depression
Meloxicam 7.5mg 1 daily for tendonitis in both shoulders, elbows, and wrists
Topiramate(Topomax) 25mg 2x daily for prevention of migraines
I feel like I am in a boat with a pin hole and while I know it will take forever for the boat to sink, I know I'm gona drown regardless! Weird way of putting it, but that sums it up pretty much.
I go see the doctor tomorrow at the cancer center, I don't know what he is (oncologist????), anyway....just dreading it and wanting to get it over all at the same time.
Thanks for all of your support,
Samantha0 -
Pin Hole In A BoatKYGirl71 said:OH....but I didn't list ALL of my MEDS...
I honestly get so tired of taking a handful of pills everyday/night....I'm not lazy, I just get into that BiPolar moment of...do I really need these, I feel fine....
No one could possibly understand what a person goes through mentally/physically unless they have ACTUALLY been through it themselves!! I know, and will proudly admit, that I am screwed up in the head and now that I am a month away from 40, obvioulsly screwed up in the body as well. It's just been a down hill slide since I was 37....kind of like fix one thing and something else breaks!! I absolutely REFUSE to walk an hour everyday after working my rear off for 9-10 hours, it's just not happenin'!! I can not stand for my family to tell me that I need to exercise when they can't see their damn toes either!! Infuriates me to no end. I'm like if you wana walk an hour...have at it!! I feel isolated and completely alone with everything that is going on with me, my family just does not understand at all. I just quit talking about it, it does no good anyway....(by family, I mean husband, daughter, stepson)! Apparently, I am just lazy and reclusive. Okay...I will give them reclusive, but I AM NOT lazy. I just really want to curl up in a ball and roll under a rock, fall in a cave, and never be found so I don't have to come out...EVER! Essentially....I am mad at the world and most of the people in it...why? Heck if I know!
My meds include:
Alprazolam(Xanax) .5mg taken as needed for sleep/nerves...mostly taken for nerves when I do take it.
Fiorecet 325-40TAB taken as needed for migraines.
Cyclobenzapr 10mg taken 3x daily for muscle spasms
Cymbalta 60mg 1 nightly for depression
Levothyroxin 125mcg and 112mcg, alternating doses everyday
Lithium Carbonate 300mg taken 3x daily (was just increased b/c of low lithium level) used for depression
Meloxicam 7.5mg 1 daily for tendonitis in both shoulders, elbows, and wrists
Topiramate(Topomax) 25mg 2x daily for prevention of migraines
I feel like I am in a boat with a pin hole and while I know it will take forever for the boat to sink, I know I'm gona drown regardless! Weird way of putting it, but that sums it up pretty much.
I go see the doctor tomorrow at the cancer center, I don't know what he is (oncologist????), anyway....just dreading it and wanting to get it over all at the same time.
Thanks for all of your support,
Samantha
I know that pin hole in a boat feeling. I have been there and many days I feel like it gets bigger. Other days I am able to plug the hole. I have told my husband on several occasions that he should not be surprised if one morning I don't wake up with him. I am sick of working and I get sick of dealing with people, bosses and plain ole jerks in the world. As far as falling into a cave, I have felt the same way except that I am too claustrophobic. I told my PCP that most days I just wanted to hide in my closet with a blanket over my head and make the world go away. This was at a follow up appointment to tell him yet again another anti-depressant didn't work for me.
Here is just a thought on your medication. My Endocrinologist makes me take the name brand Synthroid instead of Levothyroxine because he says that the doses are very consistent in the name brand. The generic brands sometimes vary from dose to dose. I pay a bit more for the name brand but so far it has paid off for me. I have kept a very stable TSH level for two years. Not saying that this will be the cure all for you but it might help a little.
My body started going to hell at about the age of 41. I am 44 now and my eye sight and hearing are really starting to suck. My coworkers laughed at me today when I misunderstood what the office manager was saying and she had to repeat it twice. Well, at least I can make them laugh. In my defense she does have a Boston accent and sometimes her words aren't real clear. Apparently the Audiologist will be there on the 15th and they think I should make an appointment with her. They were joking with me of course, but I am starting to think that I might need hearing aids soon and possibly a stronger prescription on my glasses already. Just got a new RX about four months ago.
Hang in there and keep bailing the water out of that boat even if it's an eye dropper at a time. Fight for what you want and need and never give up the ship.
Blessings,
Julie-SunnyAZ0 -
Giving me HOPE...sunnyaz said:Pin Hole In A Boat
I know that pin hole in a boat feeling. I have been there and many days I feel like it gets bigger. Other days I am able to plug the hole. I have told my husband on several occasions that he should not be surprised if one morning I don't wake up with him. I am sick of working and I get sick of dealing with people, bosses and plain ole jerks in the world. As far as falling into a cave, I have felt the same way except that I am too claustrophobic. I told my PCP that most days I just wanted to hide in my closet with a blanket over my head and make the world go away. This was at a follow up appointment to tell him yet again another anti-depressant didn't work for me.
Here is just a thought on your medication. My Endocrinologist makes me take the name brand Synthroid instead of Levothyroxine because he says that the doses are very consistent in the name brand. The generic brands sometimes vary from dose to dose. I pay a bit more for the name brand but so far it has paid off for me. I have kept a very stable TSH level for two years. Not saying that this will be the cure all for you but it might help a little.
My body started going to hell at about the age of 41. I am 44 now and my eye sight and hearing are really starting to suck. My coworkers laughed at me today when I misunderstood what the office manager was saying and she had to repeat it twice. Well, at least I can make them laugh. In my defense she does have a Boston accent and sometimes her words aren't real clear. Apparently the Audiologist will be there on the 15th and they think I should make an appointment with her. They were joking with me of course, but I am starting to think that I might need hearing aids soon and possibly a stronger prescription on my glasses already. Just got a new RX about four months ago.
Hang in there and keep bailing the water out of that boat even if it's an eye dropper at a time. Fight for what you want and need and never give up the ship.
Blessings,
Julie-SunnyAZ
Julie,
Thank you from my heart for this post, it truly helped me today. My doctor's appointment at the cancer center is in a couple of hours and because of your post I added a few more questions to the already million I have wrote down!
I have always been a fighter, just a little weak at the moment. I have been through so much in my life (like everyone in the world, I know)...could be better, could be worse, right?
You mentioned the difference between the Levothyroxin and the Synthroid...you also said your TSH levels have been stable for two years....here's the question...how often do you have to have that level checked, and if you don't mind me asking...about how much more is the Synthroid? I am able to get the two Levothyroxin scrips for $4 a piece through the Wal-Mart $4 scrip plan, so that is why I am on the Levothyroxin. However, my TSH level has been stable for the last 3 months, but before that, I was getting poked for a new level reading like every month or less, this can become quite expensive, especially when I have 0 insurance.
I work a full-time job and deal with the public every single day of my life....UGH. Like you, there are so many days I just don't want to see another human being...EVER! They truly get on my nerves, annoy the crap out of me, and sometimes.....well, okay, everyday...I have the feel for jumping over the counter and coming after a rude, etc customer!! I am truly not a people person, but I do need a job...lol! Of course, I would never literally attack anyone without justification....it's just that some people annoy the crap out of me and usually it is the last nerve in my body that they strike...I do have control over what my body may do, just sometimes not what may come out of my mouth...I am very opinionated and don't beat around the bush or sugar coat any of my comments...
Yesterday was a bad day for me, today isn't so bad yet until some idiot screws it up,,I'm off work today too, that makes a difference. There are just so many days I feel like I need to live in a bubble on that boat that is slowly sinking...frustration and irritation are the only two words I can think of at the moment to describe my mentality right now...well everyday....just don't want to deal with people..at all.
You also mentioned hearing issues..I have these too, feel like an idiot when I have to ask a customer to repeat what they said like 20x. However, my main issue is memory loss, had a customer the other day that told me they wanted Miracle Whip on their sandwich and I swear I have to ask her 6x if she wanted MW or Mayo. I literally can not remeber anything for any longer than a minute. The scary part is that Alzheimers (sorry spelling isn't the greatest)runs deep in my family. Sometimes I wonder if it is early signs of that disease or just something lacking in my body that causes this loss so quickly. This is not only frustrating, but very embarrassing as well. The customer I dealt with was truly wonderful and didn't get aggravated or annoyed with me at all, these types of customers are few and far between, trust me!
I wish you the best in this world with all that you are going through and thank you so much for the inspiration that I truly needed today...especially today.
Blessings to you,
Samantha-KYGirl710 -
i know there is a hole in the boat i just want a bigger bucketKYGirl71 said:Giving me HOPE...
Julie,
Thank you from my heart for this post, it truly helped me today. My doctor's appointment at the cancer center is in a couple of hours and because of your post I added a few more questions to the already million I have wrote down!
I have always been a fighter, just a little weak at the moment. I have been through so much in my life (like everyone in the world, I know)...could be better, could be worse, right?
You mentioned the difference between the Levothyroxin and the Synthroid...you also said your TSH levels have been stable for two years....here's the question...how often do you have to have that level checked, and if you don't mind me asking...about how much more is the Synthroid? I am able to get the two Levothyroxin scrips for $4 a piece through the Wal-Mart $4 scrip plan, so that is why I am on the Levothyroxin. However, my TSH level has been stable for the last 3 months, but before that, I was getting poked for a new level reading like every month or less, this can become quite expensive, especially when I have 0 insurance.
I work a full-time job and deal with the public every single day of my life....UGH. Like you, there are so many days I just don't want to see another human being...EVER! They truly get on my nerves, annoy the crap out of me, and sometimes.....well, okay, everyday...I have the feel for jumping over the counter and coming after a rude, etc customer!! I am truly not a people person, but I do need a job...lol! Of course, I would never literally attack anyone without justification....it's just that some people annoy the crap out of me and usually it is the last nerve in my body that they strike...I do have control over what my body may do, just sometimes not what may come out of my mouth...I am very opinionated and don't beat around the bush or sugar coat any of my comments...
Yesterday was a bad day for me, today isn't so bad yet until some idiot screws it up,,I'm off work today too, that makes a difference. There are just so many days I feel like I need to live in a bubble on that boat that is slowly sinking...frustration and irritation are the only two words I can think of at the moment to describe my mentality right now...well everyday....just don't want to deal with people..at all.
You also mentioned hearing issues..I have these too, feel like an idiot when I have to ask a customer to repeat what they said like 20x. However, my main issue is memory loss, had a customer the other day that told me they wanted Miracle Whip on their sandwich and I swear I have to ask her 6x if she wanted MW or Mayo. I literally can not remeber anything for any longer than a minute. The scary part is that Alzheimers (sorry spelling isn't the greatest)runs deep in my family. Sometimes I wonder if it is early signs of that disease or just something lacking in my body that causes this loss so quickly. This is not only frustrating, but very embarrassing as well. The customer I dealt with was truly wonderful and didn't get aggravated or annoyed with me at all, these types of customers are few and far between, trust me!
I wish you the best in this world with all that you are going through and thank you so much for the inspiration that I truly needed today...especially today.
Blessings to you,
Samantha-KYGirl71
Ok time to make up for a few posts ... in no particular order
I am also on name brand not generic... my doc also said something about being more stable doses.
my plan covers my meds so I don’t know
I did check at Wal-Mart online and synthroid is not in their $4 plan so I did the next best thing I checked costco.com (they list the prices)
There price changes by strength of synthroid so I am going to give you the Levothyroxin 125mcg and 112mcg, prices
30 day supply (125mcg) synthroid 25.36 generic 8.62
50 day supply (125mcg) synthroid 39.69 generic 12.05
100 day supply (125mcg) synthroid7 5.33 generic 20.94
30 day supply (112mcg) synthroid 25.06 generic 11.13
50 day supply (112mcg) synthroid 39.19 generic 14.13
100 day supply (112mcg) synthroid 74.32 generic 20.49
These are the full prices and do not take into account for medical coverage co-pays
---
for me they are still adjusting my levels so I get checked every 3 months but once my levels are stable I have been told it will be every 6 months.
---
Glad you have a lot of questions to ask the doctor... any chance you are willing to post some of them and maybe we can answer some or give you better/different wording. Would also love to know what the doctor answered (after appointment)
I know the it isn’t a bad day yet... Right now I only have mild vertigo so I am relatively here and cheerful... but i also dread the inevitable loud noise or movement or scanning of a shelf or such that will drive the vertigo higher.
I cannot say how much hearing I have lost do to them completely re-doing my hearing with mechanical implants (i had one of the rare types of hearing loss that can be fixed) and it takes a year or 2 before they will be able to judge how much hearing I have.
I do have memory subscriptions (much too big to be issues) I take lots and lots of notes and still forget things. I even forget routine things like I have shaved in the morning almost every day for the past 20+ years. post-C I forget about once a month. I forgot today and that’s why I brought it up.
hate saying it but yes you could be having the early signs of Alzheimer’s it can happen below 40 but it normally strikes long term and short to long term retention.. So I am guessing it’s not. Yes it could be a deficiency of some sort. If it was me I would demand blood tests but since you have zero medical coverage it’s probably not as good of an idea.
---
My wife also suffers from migraines and is on topomax and zomig and imitrex... had to look up fiorecet but realized when I did I noticed she can’t take it cause of the aspirin. Again I would say that zomig and imitrex would probably help you out on bad migraine days but I know those are not cheap.
---
Yep I feel like I am in a sinking boat... with a small bucket with a hole in it... and I want a bigger bucket. I am an introvert so yep I’m reclusive also... I will admit I am a little lazy sometimes but I do get the job done on time.
Good luck at the cancer center please tell us how it goes.
---
As for body going to hell... I think ours all are... My wife keeps telling me we should have gotten the extended warranty on our bodies... mine went to hell at 38, hers at about 30 (and she’s older than me but I’m not saying by how much).
---
btw Julie... both your eyesight and hearing may have been messed up by your thyroid. My eyesight was bad before but it has defiantly change post-Thyroid and the eye doctor was worried it might.
---
I don’t have to ask for things to be repeated anymore... I used to before i got mechanical hearing. but my memory is um.. ohh shiny. So a lot of times I have to get myself back on track and try to remember or ask again what specific thing i was trying to do... I end up with lists all over my desk and i have to date time them so i know when i last updated them...I caught myself reviewing one of my list for the 3 time in 20 min yesterday cause i remembered i had to redo the list just forgot I had.
Most my issues are that way I remember i need to do something i just forget step 2 in the plan like synthroid shower shave e-mails news breakfast pills and head out the door. I forgot to shave today and I’m not sure if i check my e-mail at home or not i was wondering why I made it to work a bit early today.
I also keep a few full sets of morning meds at work in case i realize i forgot them.
Well um... Forgot what else i was going to comment about time to use a spellchecker before I forget that
Craig0
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