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emotional :(

csequera05's picture
csequera05
Posts: 6
Joined: May 2011

My name is crystal,and I am 26 yrs old...I was diagonsed with thyroid cancer may 5 2011...I just had my total thyroid ectomy on wed, July 13th...
Since surgery I feel empty inside....extremely emotional crying a lot. Usually I am a happy out going person, but since surgery I have been the complete opposite of who I normally am, its really depressing. Will this fuzzy, depressed feeling go away?????

alapah's picture
alapah
Posts: 260
Joined: Oct 2009

Hi Crystal,
sorry to hear you're going through this. seems pretty normal to be on edge while going through this process. also, if you are not on replacement thyroid hormone meds yet, it's definitely not unusual to feel tired, fuzzy, emotional etc. messing with the thyroid can make things out of whack but the meds usually erase those side effects of the thyroidectomy and being hypothyroid as a result.

even once you are on levothyroxine, it can take some time for your doctor to determine the dose that is best for you. remember too that it takes about six weeks of taking a given dosage for it to build up in your system, so adjusting to correct levels can take some time. on the other hand, some like me are fortunate to have only gone through one dosage change to hit the target. will you be getting a dose of radioactive iodine as well? if so, you'd likely go through a period without meds post surgery as you near the RAI dose.

it does get better! i hope the journey to returning to normalcy is quick. lots of support here along the way.
best to you.
eileen

csequera05's picture
csequera05
Posts: 6
Joined: May 2011

Hi Eileen, thanks for your support I appreciate it!! As for replacement meds ...I am on liothyronine 25mcg 1 a day...
As for radioactive iodine, that will be determined by my endocrine doc, ultimately up to me....I am not sure what to do, do you have any suggestions??

csequera05's picture
csequera05
Posts: 6
Joined: May 2011

Hi Eileen, thanks for your support I appreciate it!! As for replacement meds ...I am on liothyronine 25mcg 1 a day...
As for radioactive iodine, that will be determined by my endocrine doc, ultimately up to me....I am not sure what to do, do you have any suggestions??

alapah's picture
alapah
Posts: 260
Joined: Oct 2009

I had to look that up! Only ever hear it referred to by brand name... Cytomel is commonly prescribed for people inbetween surgery and RAI. I never had that though so I don't know about dosages. If that is too low a dose for you, it could make you hypothyroid which could make you feel blah. Where levothyroxine takes six weeks to build up in your system (a T4 drug) liothyronine is much quicker (a T3 drug). It builds up fast and dissipates fast.

Before going through with RAI you would be off of the replacement hormone in order to make your TSH level high so that any remaining thyroid cells in your body would be most receptive to the RAI. Determining if a person needs RAI seems to be a bit tough. Some with small nodules and no spread to lymph nodes are instructed to forego RAI. I wasn't in that category and went through it once - 100 millicuries. It is kind of creepy but not so bad and I believe well worth it for the benefits.

There is a lot of very helpful information about thyroid cancers, treatments, labs etc at a site called thyca.org You might want to have a look. It was a very good resource for me. They also sponsor two Yahoo groups for thyroid cancer patients that are very good.

3boys_mom
Posts: 47
Joined: Jun 2011

Hi Eileen,
You might want to talk to your dr. about spreading that 25mcg out through out the day. I do much better if I take 10 mcg in the morning, 10 mcg around 2 or 3 and then 5 mcg at 8 pm. Also, many hypo patients I know all spread the dosage out throughout the day. It has a very short life. Also, if you can get the brand name, many find that taking it sublingual really helps. Good luck.

Sarah

nasher
Posts: 507
Joined: Apr 2010

Ok yes they have you on cytomel or the generic liothyronine if you look at the pill there is a score line on it. Break them in 1/2 and take 1 in morning and 1 in afternoon.

it takes about 8 days for cytomel to build up to the level it will build to.

If you are having depression issues ask about anti-depressants. I hate taking them but they do help

the reason they put you on cytomel instead of synthroid is nothing to do with the buildup in the system but rather how quick your body can get rid of it.

they will be doing a scan in the future with a trace amount of Radioactive Iodine but to make sure your body will uptake it they will put you on the dreaded "Low Iodine Diet" and probably take you off of cytomel for 2 weeks (ask if it is possible to get Thyrogen shots instead of being taking off cytomel)

Once the scan is done they will be able to tell you how much thyroid tissue is left in the body and if it has spread to any other parts of the body.

as far as the dose 25mcg is the standard dose of cytomel while your body still has remaining thyroid hormones in it they are waiting for the t4 that your thyroid made to deplete from your system (30-60 days) then they will have you ready for your scan (with taking you off cytomel and putting you on the low iodine diet.

---
Personally I would recommend doing the Radioactive Iodine treatment but that’s me. They do not think the cancer spread on me but I was not going to take that chance

Also what type of thyroid cancer was it and do you know what stage or anything? Oh and insist they test for B-RAF mutation. if you have it you really need the Radioactive Iodine cause if not it will most likely come back, even with Radioactive treatment it may come back.

---

Once this is all over and they start to setup you on your "permanent dose" of your meds.
The doctor will try to put you on Synthroid only... ask if you can be put on synthroid/cytomel combination it really helps

The final dose depends on your weight as well as other things

For myself I am 310 lbs my dose is 200mcg synthroid and 25 mcg cytomel. I split my cytomel to 2x a day and it helps.

Ok some basic info
Cytomel/ Liothyronine takes about 8 days to come to final or changed levels
Synthroid/Levothyroxine takes about 45 days to come to final or changed levels

so every time they change your levels they will tell you to do a blood test 2 months later.

If at all possible insist on Thyrogen injections even if you have to wait a few weeks longer for it because it’s MUCH better than going off your cytomel.

Good luck and please keep us up to date.

Once they get you closer to your final levels yes most the fuzzy and depression should go away

Craig

csequera05's picture
csequera05
Posts: 6
Joined: May 2011

thank you for your input, I appreciate it... all this thyroid talk is seriously like speaking a new language to me, lol however Papillary carcinoma, that is the type of thyroid cancer i was diagnosed with. The doctor explained to me it was in the first stage, and that this type is not aggressive, to the point it wont spread quickly, however in saying that during my surgery, the surgeon removed some lymph nodes on the left side of my neck, in which, the cancer had spread to.... SCARY!!!!
As for the fuzzy and depressed feeling, as the days go by i am dealing with these new feeling better, i have a great support team (my family) and boyfriend, inwhich they will not let me get to far into my head, however easier said then done, lol I feel good today, last night I had a weird head ache, and today i can feel one coming on, not sure if this is normal, i was never one to get head aches often, so is this normal?
Also, I have my first endocrine doc app, tomorrow, I am hoping to get further knowledge, about the radioactive iodine, personally I think it is best i do go through with it, just not 100% sure yet. I always draw blanks in doctors offices, Are there any questions i should ask my endocrine doc, tomorrow?????? also what is B-raf mutation?

nasher
Posts: 507
Joined: Apr 2010

B-raf mutation is something that can cause papillary cancer to be much more aggressive.

Yes it is scary.

If it had spread to your lymph nodes I guess technically it is still stage one

--- cut and paste from thyca.org ---

Stages of cancer of the thyroid

Once cancer of the thyroid is found (diagnosed), more tests will be done to find out if cancer cells have spread to other parts of the body. This is called staging. A doctor needs to know the stage of the disease to plan treatment.

The following stages are used for papillary cancers of the thyroid:

Papillary and Follicular Thyroid Cancer in Patients Younger than 45 Years of Age:

Stage I Papillary and Follicular

In stage I papillary and follicular thyroid cancer, the tumor is any size, may be in the thyroid, or may have spread to nearby tissues and lymph nodes. Cancer has not spread to other parts of the body.

Stage II Papillary and Follicular

In stage II papillary and follicular thyroid cancer, the tumor is any size and cancer has spread from the thyroid to other parts of the body, such as the lungs or bone, and may have spread to lymph nodes.

Papillary and Follicular Thyroid Cancer in Patients Older than 45 Years of Age:

Stage 1 Papillary and Follicular

In stage I papillary and follicular thyroid cancer, cancer is found only in the thyroid and the tumor is 2 centimeters or smaller.

Stage II Papillary and Follicular

In stage II papillary and follicular thyroid cancer, cancer is only in the thyroid and the tumor is larger than 2 centimeters but not larger than 4 centimeters.

Stage III Papillary and Follicular

In stage III papillary and follicular thyroid cancer, either of the following is found:

the tumor is larger than 4 centimeters and only in the thyroid or the tumor is any size and cancer has spread to tissues just outside the thyroid, but not to lymph nodes; or
he tumor is any size and cancer may have spread to tissues just outside the thyroid and has spread to lymph nodes near the trachea or the larynx (voice box).
Stage IV Papillary and Follicular

Stage IV papillary and follicular thyroid cancer is divided into stages IVA, IVB, and IVC.

In stage IVA, either of the following is found:
the tumor is any size and cancer has spread outside the thyroid to tissues under the skin, the trachea, the esophagus, the larynx (voice box), and/or the recurrent laryngeal nerve (a nerve with two branches that go to the larynx); cancer may have spread to nearby lymph nodes; or
the tumor is any size and cancer may have spread to tissues just outside the thyroid. Cancer has spread to lymph nodes on one or both sides of the neck or between the lungs.
In stage IVB, cancer has spread to tissue in front of the spinal column or has surrounded the carotid artery or the blood vessels in the area between the lungs; cancer may have spread to lymph nodes.
In stage IVC, the tumor is any size and cancer has spread to other parts of the body, such as the lungs and bones, and may have spread to lymph nodes.

--- end paste---

So just by being under 45 the "stage of the cancer" is different... if you were older than 45 it would have been considered stage 3

YES it is an entire different language and I recommend you do your best to learn it so you can know what’s happening to you and better explain things to the doctor.

I know we have tried many times to come up with questions to ask the doctors but I always forget what we came up with...

Take notes or have someone with you take notes.
Ask if the frozen section can be tested for B-raf mutation
Ask to see the report of the tissue removed as well as size of cancer found and such.
Did they take out any parathyroid’s?
Ask the doctor what all the pro's and con's of RAI treatment are (Radioactive Iodine)
Explain any aches and pains you have gotten since surgery
Any concerns you have
What is the plan for TSH suppression and once you are through with RAI treatment (or decided not to do it) can you be put on a synthroid/cytomel combination.
Since you are having depression you might want to talk to you doctor or endo about anti-depressants.
How many lymph nodes did they remove and what issues may this cause later in life
----
in my opinion I would go for RAI treatment but YOU have to make the decision don’t let the doctors push you either way, they can guide you and explain the risk/reasons but don’t let them be the ones deciding for you.

You will be up for a whole body scan with RAI (even if you decide not to do RAI treatment) and you will have to go on a LID (low iodine diet) go to www.thyca.org for a good idea on what’s involved there.

Ask if you can get Thyrogen injections instead of going of thyroid replacement I have done it both ways trust me Thyrogen injections is the way to go.

Take someone with you preferably family
Have your family and boyfriend look through this site and others and see if they can come up with questions to ask the doctors.

Ask the questions here as well we may be able to explain some of the things (still ask the doctor) and it may give us another good question to ask the doctor.

For instance Julie-SunnyAZ was the first one that i know of who brought up the importance of B-RAF mutation. It still took me a few months later to find out that they didn't test for it and the more months to figure where the frozen section was and in 2 weeks time i will meet with an ENT doctor ( who i have never met) to get the paperwork running and the lab test ordered. Then it will be 10+ days before we get a result. Thanks again Julie for bring up the B-raf stuff.

Someone else came up with asking the doctors about the synthroid/cytomel combination (not sure it may have been me) but it helps a lot as well.

Find a cancer support group
Remember you are a survivor
resist the urge to kill any doctor who makes a comment like "you got the good type of cancer" "you won the cancer lottery" "but it’s a good cancer" ... I know there are more I just can’t remember them right now.

Keep us up to date and ask as many questions as you can think of to us and your doc (or both)

Craig

csequera05's picture
csequera05
Posts: 6
Joined: May 2011

I cant thank you enough, for taking the time to be sooo informative to me:) i appreciate you....I met with my endo this morning, we are going through with RAI, starting tomorrow i will go of my thyroid meds...also start my LID, and in 2-3 weeks i should have my TSH high enough to start treatment... also he mentioned the thyrogen shots, however the company that makes the thyrogen had a recall and everything is on back order, so we r just going to wing it with out, throw me into hypo... and go from there... anyways before i ever knew i had a thyroid problem, apparently i was always hypo, so what will be the difference now, hoping all goes well, once again thank you for all your input-----------Crystal

nasher
Posts: 507
Joined: Apr 2010

it is too bad that they are unable to do thyrogen shots.

the difrence wow um will probably be major

some people manage without much problem.

expect to be
1) extreamly tired
2) impaired cognitive function (brain fog) (i had to rely on yellow stickies and multiple alarms so i knew when things were happening
3) impaired memory
4) slow reflexes
5) major depression
6) crying fits
7) cold intolerance (shouldnt be a problem this time of year)
8) muscle cramps and joint pains
9) some hair loss posible
10) weight gain
11) water retention

i am sure there are more but honestly I dont remember what else.

oh alot of us found it is much easyer to plan and make and freeze your meals for the time you will be on your LID cause you will have much harder time once you are on it to remember to do it properly or have the energy to do it.

remember it is a low iodine not a low salt diet you can find iodine free salt at the store right next to the salt with iodine in it.

do you have your plan for post RAI ... www.thyca.org had a good section on that too.

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