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RAI Treatment

KYGirl71
Posts: 25
Joined: Aug 2011

Hello, I am new to this so just bear with me please----I was diagnosed with papillary carcinoma July 2010. I had a thyroidectomy. However, I was never given the radio iodine pill to kill any left over tissue from surgery and did not have the I-131 scan/process until just two weeks ago (over a year later). I got the results of the scan yesterday which did show recurrence of the cancer, with no nodes involved. I will be going to a cancer treatment center in my area next week for more RAI treatment and honestly I have no idea what to expect. My surgeon told me that I will now be allowed to take my thyroid medicince while doing the treatment....am I missing something here because I thought you couldn't live without your thyroid replacement hormone??? I am not trying to have a pity party, but I am so confused and scared. Any comments, words of wisdom, or advice are welcome.

Thank you,

KYGirl71

nasher
Posts: 507
Joined: Apr 2010

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

KYGirl71
Posts: 25
Joined: Aug 2011

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

nasher
Posts: 507
Joined: Apr 2010

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

KYGirl71
Posts: 25
Joined: Aug 2011

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

nasher
Posts: 507
Joined: Apr 2010

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.

KYGirl71
Posts: 25
Joined: Aug 2011

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.

sunnyaz
Posts: 582
Joined: Oct 2010

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

KYGirl71
Posts: 25
Joined: Aug 2011

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 KYGirl

nasher
Posts: 507
Joined: Apr 2010

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

KYGirl71
Posts: 25
Joined: Aug 2011

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

nasher
Posts: 507
Joined: Apr 2010

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

KYGirl71
Posts: 25
Joined: Aug 2011

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

KYGirl71
Posts: 25
Joined: Aug 2011

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

nasher
Posts: 507
Joined: Apr 2010

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.

sunnyaz
Posts: 582
Joined: Oct 2010

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

nasher
Posts: 507
Joined: Apr 2010

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

KYGirl71
Posts: 25
Joined: Aug 2011

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

sunnyaz
Posts: 582
Joined: Oct 2010

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

KYGirl71
Posts: 25
Joined: Aug 2011

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

nasher
Posts: 507
Joined: Apr 2010

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

Craig

sunnyaz
Posts: 582
Joined: Oct 2010

Samantha,

You sound like a really tough cookie. I mean that in a good way. You are a survivor. My memory is really bad too. I have sticky notes at work that I put everywhere. My coworkers even walk by my desk and slap them on my scrubs and sometimes right on my forehead. One on my forehead was written backwards and said, "don't forget to wash your hands" so I would see it in the mirror when I went to the bathroom. Kind of like when they spell AMBULANCE backwards so you can read it in your rear view mirror. I am fortunate to have a good group of people to work with for the most part. They laugh with me instead of at me.

Oh, I am also very clumsy now. Once in my life I had much grace and poise. One of the doctors had to remind me today not to trip over her chair mat AGAIN as I was leaving her office with a stack of reports. You know that plastic mat you put under your office chair so it will slide when you have carpet in your office. Well, hers is just slightly too big and folds over the edge of her desk as the base and I never fail to forget it's there.

I walk around with empty vials of vaccines in my pocket with sticky notes as to what patient I administered them to and which part of the body so that I won't forget to record them in the computer. By the end of the day I am weighed down with glass vials. No wonder I have back problems. Oh and then there's my friend Lisa at the office who is sick and tired of me asking where supplies are AGAIN and AGAIN. So she took the label maker and marked the cabinets and drawers with everything that is in them. Makes it really easy to train the newbies though. I just tell them to go look at the labels and find what they need. I make them think it's for them so they don't think I am a complete idiot. Lisa is kind enough to go along with it.

I pay $26.50 or thereabouts for my Synthroid for a thirty day supply. I don't think insurance really helps me. My co-pay is more than the cost of the medication. I still don't get that. So, from what Craig says, you can get it for the same price as I.

I doubt that this is early Alzheimer's. I think it's a symptom of not having a thyroid. This seems to be a common denominator for most of us. We just have to learn to be patient with ourselves, laugh at our misgivings and hope the ones we love and work with will laugh with us and support us. I think I get better at making adjustments to my memory loss. Yeah, I look super silly walking around wearing bright colored sticky notes but it makes my patients laugh and they always enjoy seeing me when they come in for their appointments. I keep them laughing. Most of them are older because I live and work in a retirement community. They complain and make jokes about how they are shrinking with age every time I measure their height. They all notice the trend in how we move down in height and out in width. I just say "gravity happens." Some of them I know well enough to tell them that I used to wear a bra size of 34C and now I wear a 34 Long. Have to be careful saying that to the ones with incontinence problems though. Hopefully they have on their depends.

Hope your appointment went well. I look forward to hearing about it.

Live, Love and Laugh my friend,
Julie-SunnyAZ

KYGirl71
Posts: 25
Joined: Aug 2011

Where do I begin....I will not be starting anything for 4 weeks when I go back and he takes me off my thyroid meds, a week later radiation treatment will begin for approximately a month. I will definitely feel like poo during this and will not be able to work during treatment (wth am I gona about paying bills?!!) He said because of the high dosage of radiation and the fact that I work with the public, I just can't work, period! Great, why not add more stress!! He explained that I could have a sore throat, hoarseness, difficulty swallowing, could like I have the mumps, taste changes to no taste at all, and dry mouth. YAAHH!! I talked to him about the dizzy spells and he told me to go back to my regular doctor because it did sound like vertigo or Meniere's Disease. WOO HOO, I'm on a roll now...So this will be the next appointment I make...hopefully my reg doc will be willing to listen to the symptoms like the oncologist....time will tell. I forgot to mention the memory loss...seriously, I really did forget, go figure, but will difinitely bring it up next time, and I will write it down and stick it in my purse. There were still a few questions that I did not get a chance to ask him, but I still have them all written down on a piece of paper and will take them with me in 4 weeks.

I love all of your all's posts, some make me laugh and I need to laugh alot these days. All of you all have so wonderful in 'holding' my hand through this and I truly wish I could personally meet you all. Really wonderful people on here and I am ever so grateful!! I have days where I just want to break down and cry, but tears will help nothing!! I do believe my husband is in some kind of denial with all of this b/c he never really wants to talk about it and didn't even ask me what went on at the doctor's office yesterday....I will let him deal with it in his own way I guess, which makes me feel alone in all of it, but OH well, I can deal!!

Hope all of you have a wonderful day and many blessings

Samantha

KYGirl71
Posts: 25
Joined: Aug 2011

Where do I begin....I will not be starting anything for 4 weeks when I go back and he takes me off my thyroid meds, a week later radiation treatment will begin for approximately a month. I will definitely feel like poo during this and will not be able to work during treatment (wth am I gona about paying bills?!!) He said because of the high dosage of radiation and the fact that I work with the public, I just can't work, period! Great, why not add more stress!! He explained that I could have a sore throat, hoarseness, difficulty swallowing, could like I have the mumps, taste changes to no taste at all, and dry mouth. YAAHH!! I talked to him about the dizzy spells and he told me to go back to my regular doctor because it did sound like vertigo or Meniere's Disease. WOO HOO, I'm on a roll now...So this will be the next appointment I make...hopefully my reg doc will be willing to listen to the symptoms like the oncologist....time will tell. I forgot to mention the memory loss...seriously, I really did forget, go figure, but will difinitely bring it up next time, and I will write it down and stick it in my purse. There were still a few questions that I did not get a chance to ask him, but I still have them all written down on a piece of paper and will take them with me in 4 weeks.

I love all of your all's posts, some make me laugh and I need to laugh alot these days. All of you all have so wonderful in 'holding' my hand through this and I truly wish I could personally meet you all. Really wonderful people on here and I am ever so grateful!! I have days where I just want to break down and cry, but tears will help nothing!! I do believe my husband is in some kind of denial with all of this b/c he never really wants to talk about it and didn't even ask me what went on at the doctor's office yesterday....I will let him deal with it in his own way I guess, which makes me feel alone in all of it, but OH well, I can deal!!

Hope all of you have a wonderful day and many blessings

Samantha

amorriso
Posts: 186
Joined: Oct 2010

Hi. I understand your fears with the memory problems - my dad has alzheimers.

My memory has slowly been inproving - I've honestly been doing brain exercises - I got a book from the book store and have been using it. I am still forgetful, and I talk to myself a lot to remind me of things to do. But its getting much better.

I also take a Bcomplex or Stress tab daily - my doctor said it could help.

I find I dont have a lot of patience with people - I get a bit short tempered over little things. I do a LOT of deep breathing and counting to 10 to keep calm and to stop myself from saying the wrong thing!

I hope your appointment went well and you found some answers!

Andrea

MarinMark
Posts: 139
Joined: Aug 2011

Wow, Nasher. That is one impressive list of disabling symptoms. Somewhere I read that not everyone gets all those symptoms. So has anyone ever tolerated being off thyroid for two weeks and still felt pretty good ?

Which way is more effective to destroy thyroid tissue--- the shot or stopping all thyroid medicine ?

sunnyaz
Posts: 582
Joined: Oct 2010

I definitely recommend the Thyrogen injections. Worked for me. No difference in destroying the tissue. No scientific proof.

nasher
Posts: 507
Joined: Apr 2010

I am replying here so we un-tab this conversation my browser window only goes so far :P

ok i see you got some of your answers answered in the dr appointment.

Samantha I am so glad we can be helpful and supporting and sometimes make you smile or laugh.

You are defiantly a survivor.

My memory is a pad of yellow stick-ie notes and alarms and computer notes.

I am very clumsy now... don’t know how much is thyroid related and how much is vertigo related I used to have the grace of a bull in a china shop... and now... well some days it looks like a drunkards walk :P (that when the vertigo hits) and yes i have a doctor’s note with me saying i suffer from sever vertigo so if i get pulled over i can skip all the field sobriety tests and just go straight to breathalyzer and or blood draw (if they suspect drug use).

that is one good thing I am looking for my meds are completely covered for life... as long as i go to the required pharmacy. Julie you might want to try to get on 90 day supply’s maybe the co-pay will be lower than that or at least it will save you 8 trips to the pharmacy a year.

yes I think I said it before i doubt if its early Alzheimer's but it would be something to look at cause of your family history but Julie is probably right its just being thyroid brained.

Oh Julie that plastic mat if it’s too big and folds on the edge is a Safety hazard and should be trimmed to fit for everyone’s safety. My work is a VPP Star site and we have inspections to check for things like that as well as other safety issues.

ok Samantha it sounds like you have a rough plan time to get out timers and alarm clocks and sticky notes and such.

1) Has he talked about Low Iodine Diet?
2) um are you still on synthroid or generic... they normally have you on Cytomel or generic and I always thought it was 2 weeks off thyroid meds(Cytomel and 1 month+ of synthroid) prior to RAI... if you’re on synthroid or its generic then um...you need to talk to the doc NOW and not in 4 weeks.
3) Let’s see RAI changes...
.a) loss of taste check about 1 month very little taste then a constant metallic salty taste permanent.
.b) hoarseness check about 2-3 weeks
.c) mumps like feeling ... nope I did get slightly swollen salivary glands when you massage them you feel a salty taste in the mouth but not mumps feeling.
.d) dry mouth... definite check. I do not have to worry about drinking enough water I drink over 10 16 oz glasses of water a day + a diet soda or 2 + milk + oj +.....
4) Ok he mentioned high dose of radiation... did he say how high?
..... Mine was 175mCi of I-131
5) From about 3 days with no thyroid replacement your going to feel run down and really start forgetting things.... then your memory will really start to go.
6) one of the Pharmacy techs made extra labels for my pills (she is my friend) the label read in the warnings
"May cause drowsiness and installation of Windows Vista use care when operating car or heavy machinery. take exactly as directed. Do not skip doses or critical system updates or discontinue unless directed by your doctor."
7) I wish I could meet all of you as well, but right now I don’t travel well.
8) Cry when you need to it does help yes you want to be strong but sometimes you need to be week.
9) Quick dizziness education Vertigo is a symptom of many things including Ménière's Diseased and Syndrome
Ménière's syndrome is caused by among other things both hypo- and hyperthyroidism
Ménière's disease is idiopathic, but it is believed to be linked to endolymphatic hydrops, an excess of fluid in the inner ear (in other words we don’t know what causes it)

Vertigo is one of the effects of Ménière's, as well as other balance disorder’s.

10) Denial - yes I understand family and friends tend to get tired or don’t want to believe it’s as bad as you say it is.
11) Find a cancer support group
12) best way to deal with a lot of questions to your doctor is print out 2 copies of your questions and give one to the doctor... that way you don’t forget to ask something (as often) and he/she has something to make notes on as well.

@andrea (amorriso) yes i agree B-complex seems to help memory as do memory games/brain exercise.

I used to joke about losing my mind... it’s not as funny now.

I know I posted these before but some breast cancer comic's

http://xkcd.com/931/

http://xkcd.com/933/

And a drug trial comic

http://xkcd.com/938/

I will admit most of the jokes at xkcd are defiantly geek jokes or over my head jokes but those ones touched me.

Wonders why there is a “remember to spell-check” sticky on the corner of my screen.

Craig

KYGirl71
Posts: 25
Joined: Aug 2011

Craig you mentioned the metallic taste in mouth during the treatment, well I have already been having this metallic taste and I haven't even started treatment yet!! It is very irritating and along with it comes a lot of salivating and I mean A LOT!! Why is this happening now instead of later? Not that you know the answer, but guesstimates are welcome. I am more clumsy now than I have ever been, even though I have never been graceful at anything I have done, and now that I have my hand on 40's doorknob, it seems that the memory loss and clumsiness are becoming increasingly worse.

I have no idea right now what doseage of radiation I will be taking, didn't ask either, stupid of me. He did not go into detail (nor did I ask) how often treatment will be done in the period of a month. He never mentioned the LID and I didn't have it written down to ask him about it. Yesterday was mainly about medical history and family medical history and b/c I have no insurance, I kind of felt like I was being pushed out the door in a hurry. With that being said, I still have all my questions that I intend to ask that I didn't ask yesterday and I plan on adding more to the list. For now, I am still taking the two doses of Levothyroxin as directed. He never said to change anything while waiting for the next appointment to arrive (Sept 20).

I am having a really good day today, I am sure tomorrow will be different. I will be going to my regular physician Monday to discuss these dizzy/nausea spells I have been having the last 2-3 months and I pray that she will do tests or something and tell me that I am not losing my mind completely and that yes, there is something else going on to cause these spells. It is getting to the point where I am falling because of these spells and will prolly end up hurting myself before it's over with.

I make light of some of the situation sometimes because it is the only coping mechanism I know of right now. I know that there are people out there who have it a whole lot more worse than I do and I should be thankful for the way things are going now. However, sometimes I can not help but believe that this is the punishment I deserve for some of the wrongs I have done in my life....No, I have never killed anymore, robbed anyone, ect. I just believe I am being punished for some things that I have done in the past....Karma is funny like that. She can be your best friend or your worse enemy....right now, I shall call her a frenemy!!

I do the best I can, day by day and let the rest fall into God's hands. What will be, will be and I know that some things I simply can not change. I am just hangin' in there the best I can...and yeah...sometimes I do cry..when no one is watching, but I also remember I am not alone and that there are people out there going through the same exact thing as me.

Samantha

sunnyaz
Posts: 582
Joined: Oct 2010

Samantha,
I just wanted to let you know that my Nuclear Med doctor gave me Steroids to take during my treatment that really helped with loss of taste and salivary gland problems. I have no after effects. I truly believe it's because of those steroids. Only for a short time I had slight loss of taste but it all came back within about six weeks. Some strange taste when I ate certain foods, but now I am totally back to normal. Just thought I would throw that out there as a possibility and something to add to your list. I would almost insist on it.
Blessings,
Julie-SunnyAZ

nasher
Posts: 507
Joined: Apr 2010

"didn't ask either, stupid of me" it is not stupid... its just takes about a year or so to get to the mindset of asking all these questions you never thought you needed to ask.

Unfortunatly you are probably right Samantha since you are the no insurance catagory they do tend to be overbooked so badly that they only have a few minuits to get to you and then off to next person.

"It is getting to the point where I am falling because of these spells and will prolly end up hurting myself before it's over with. "
make sure you recoard every fall or major trip and such as well as every dizzy spell and if you can figure what probably trigered it or made it worse.

One major reason I am adiment about makeing a list of questions (mine are never perfict) is that at least it gives the doctor the questions even if you get a little brain fog at appointment time or if it gets so hectic that you just forgot about asking that.

as far as your dizzyness is concerned...Mine has been bad enough that my PCP gave me a tempoary handicaped form filled out so I can get handicaped placerd for 6 months... He told me once I am retired from the Military the doctor will probably make it a perminate one.

---
Yes Julie I wish I knew about steroid shots or such or to ask about them prior to RAI... But again I think Samantha and MarinMark are going to both be in the same spot of not being able to afford them due to not haveing medical insurance.

---
@MarinMark
"Which way is more effective to destroy thyroid tissue--- the shot or stopping all thyroid medicine ?"
-- From Drugs.com--- http://www.drugs.com/pro/thyrogen.html
Even when Thyrogen-stimulated Tg testing is performed in combination with radioiodine imaging, there remains a meaningful risk of missing a diagnosis of thyroid cancer or of underestimating the extent of disease. Therefore, thyroid hormone withdrawal Tg testing with radioiodine imaging remains the standard diagnostic modality to assess the presence, location and extent of thyroid cancer.
Although Thyrogen appeared noninferior to thyroid hormone withholding in a study of postsurgical thyroid remnant ablation, long-term clinical outcome data are limited. Due to the relatively small clinical experience with Thyrogen in remnant ablation, it is not possible to conclude whether long-term thyroid cancer outcomes would be equivalent after use of Thyrogen or use of thyroid hormone withholding for TSH elevation prior to remnant ablation.
---
thyrogen has been avalible since 11/30/1998 before that point the only way to check was the Hypo-hell withrdraw way. to be honest there is not enough data for them to determine if thyrogen or Thyroid withdrawl is the best path.

---
"Somewhere I read that not everyone gets all those symptoms. So has anyone ever tolerated being off thyroid for two weeks and still felt pretty good ?"

no not everyone gets every symptom of that when i went through my RAI treatment i was off my meds for two+ weeks so with a little cut and paste i will list what symptoms I remember haveing

Poor muscle tone )really hard to say for those 2 weeks i didnt have energy to work out)
Fatigue (DEFINATLY i would call it more of exhaustion)
Elevated serum cholesterol (didnt get a test for this till right after RAI and it was higher)
Cold intolerance, increased sensitivity to cold (did this in may and definatly noticed cold)
Constipation (minot nothing major)
Depression (DEFINATLY)
Muscle cramps and joint pain (hard to say here I have had issues with cramps and joint pain for years)
Coarse hair (dont have much didnt notice)
Paleness (dont do much time in sun so dont know)
Decreased sweating (pretty sure not positive)
Dry, itchy skin (definatly
Weight gain and water retention (yes i had water retention and weight gain)

Impaired memory (definatly)
Impaired cognitive function (brain fog) and inattentiveness (definatly)
Sluggish reflexes (definatly)
Increased need for sleep (definatly)
Irritability and mood instability (&@*%(@% Definatly)
--- I deleted the ones that were no's---

hope some of this helps.

KYGirl71
Posts: 25
Joined: Aug 2011

I just received a booklet from the cancer society that into more depth about the type of cancer that I have and I found it very informative...still not all questions answered...but a little more positive about the whole situation. I only wish that I could get my family to understand WHY I am so tired all the time, especially when I work 9-10 hour days. I come home, take a shower, and either A)hit the bed, or B)grab my book and hit the bed. Either way, I am in the bed and usually sound asleep by 8pm. I have to get up at 2:00am 5-6 days a week to be at work no later than 3:15am and work (and I do mean work!) until no later than 12 or 1pm. I am completely and utterly exhausted when I get home and once I sit down, it really is all over for me. Of course, being BiPolar does not help matters either and this is really a prickly situation because no one understands what goes on in my mind on a daily basis or why I am in the mood I am in and why I stay that way....even with the help of daily mediciation. I feel like an 80-year-old woman with all the medications that I have to take everyday....just to function....and I must have the little pill boxes so that I can remember what to take and when, my pill boxes are even colored to keep up with the weeks. I am two different doses of Levothyroxin that are alternated every other day and without the colored pill boxes I forget if I took the pink pill or the gray pill. My memory seems to be getting worse because, literally, there are days where I could not tell you what I did yesterday, or even an hour ago...it sucks!

I try to look on the 'bright' side of things, but anymore, there are only dim sides to everything. I get so frustrated, angry, annoyed, aggravated, and mad with every one around me and I honestly don't mean to...it's just the way it is. Ones around me want to know why I am in the mood I am in or why I am crying and I honestly can not give them a logical reason.....other than this is just the way I am and this is just the way my brain functions. I really don't know a definition of normal, because I never have been and never will be!!

"If you can't take me at my worse, then you don't deserve me at my best" -Author Unknown

Always loved that saying. Yeah, my attention span and focus are totally out---Oooohhh sparkly...you get the picture.

I hope everyone has a good holiday weekend. Thanks for all the support.

Samantha
aka KYGirl71)

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