Hypothyroidism Support Group

Hypothyroidism is the disease state caused by insufficient production of thyrohormone by the thyroid gland. There are several distinct causes for chronic hypothyroidism, the most common being Hashimoto's thyroiditis and hypothyroidism following radioiodine therapy for hyperthyroidism. Advanced hypothyroidism may cause severe complications, the most serious one of which is...

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mnov72 04/25/2011

Hi..I am new to this site...am hopeful for any advice. I had RAI 7 1/2 years ago for graves, now hypo. Have been on synthroid since. The first few years seemed ok...but I have noticed a decline in my well being lately. My skin is brutal. Itchy most of the time, red and dry. Acne, hair falls out periodically, half of my eye brow is gone. Do not handle temp changes well at all. The winter is brutal but summer not so good either. Told I have rosacea, but another doc is not conviced... the redness comes and goes. Nails...forget it. Can't lose the weight I have gained either. Never had allergies or sinus trouble til the past year and a half. Moods are probably the hardest symptom to handle. I go through these spells of overwhelming sadness and tears. Very emotional. Some times shake or tremor, anxiety attacks. I started on .50 mcg 7 years ago now up to .137 mcg. been up and down with doses for the past several years due to miscarriages. Had significant work up by docs, neuros, fertility, osteos, PCP, etc. Praise God.... My endo tells me now, that i am just crazy and that synthroid has nothing to do with it. Things have gotten worse since the increase yet, the increase has helped my muscles aches and pain. I used to be very active, physically fit. My skin, oh my skin..... it is just terrible. I now see on here there are certain foods that can affect things... I asked my endo this and he said there is no issue, take your synthroid and move on. Ask you pcp for antidepressant. That is all any of these guys have been trying to give me. Can anyone give me some sort of guidance of a direction to take? Also my TSH has been 5, then 4.5, then 1.9, then 3.9, then 2.8... T3 was 90 and T4 was at very top of range. I kept running the tests to see, but my doc only does tsh and t4. I made him run the T3, but not sure what any of this means. All other blood work is good, CBC, BMP, Rheumi Factors, ANA, Hormones, Vitamins, etc... all good! I feel so alone, everyone just thinks I am crazy. I am so sorry for the long winded message and greatly appreciate anyones response.
Thank you and God Bless!

StillListing 04/26/2011

Been thru it myself to some degree. I was referred to an Endo. He had me on Levoxyl instead of Synthroid. It's still a generic but yet you get one manufacturer. It's hard enough to regulate, but let's put apples to apples...Tell your pharmacy you only want Levoxyl. ( they will give you any generic of synthroid and that's not enough to deal with this disease.
Your doc needs to test you TF3's, TF4's and TSH, along with measurement of your symptoms. Wishing you the best - diagnosed 5/09...and am still working on the correct cocktail...M
I have been on a T3 adjunct. I am taking a generic of Cytomel. It has been very helpful to my meomory and hair loss.

mmztcass 04/26/2011

mnov:

I am sorry you are still suffering. Getting an RAI does not cure one from the Graves' Disease. The person still has GD for the rest of their life.

You might want to come over to the GD board and read up threads about diet and such. Unfortunately for many people with RAIs, they still have to watch out for the diet triggers in which foods/drinks that sets them off among stress, etc.

Also the TSH is not to be looked at as the thyroid antibodies are high (such as it is from still having Graves' Disease antibodies) and instead pay attention thyroid levels of the Free T3 and the Free T4 will help to adjust the Synthroid to. Synthroid is a T4 med.

Good luck and I have some links from the GD site for you to look at or if you find one of my recent answers to someone else's thread about the very same thing you can read up at.

Thyroid disease is difficult and I've been both hypO and hypER for over 34+ years now.

{{{hugs}}}

P.S. If you need help understanding lab results, please post together with the lab ranges and we'll answer your Qs...

mnov72 04/26/2011

Thank you both for your reply. In all these years my doctor never explained any of this too me. Just kept me on my meds. It makes so much more sense to me. I had no idea food was an issue. I changed my diet to whole foods, organic etc....still no better. Thank you. I will look at the information and start figuring out how to get my life back. I was beginning to think it wasn't possible. Why don't the endo's tell us? Thank you again both! God bless! :)

bm55 04/26/2011

So sorry, I had RAI seven years ago and have never found a doctor that knows about post RAI graves patients. They only want to check TSH.

My dose of T4 has been going down but could be a part of the aging process. IDK

mnov72 04/26/2011

I didn't have the issue until recent. I am wondering if as mmztcass mentioned, if the stress i was under triggered the "flare". I wont bore anyone as we all have our troubles, but let's just say, the stress was quite a lot. Can anyone tell me where on the Graves web site I can find the foods to stay away from or to eat? Thanks!

bm55 04/26/2011

I have read that we mainly want to stay away from iodine which will make us hyper. Also eating a lot of goitragens will suppress the thyroid function. Don't think I spelled that right.

mnov72 04/26/2011

Why don't the doctors tell us this. I specifically asked and he said eat what you want. Then pinched my stomach and said, well in moderation. You are getting older and putting a little weight on there! Nice right...... To be honest, and forgive my ignorance, i had no idea what goitrogenic foods were until I joined this site. Thank God for little things! :) Is salmon ok? Also what about fish oils? I take them and am not sure if they can be an issue? What supplements are ok to take? I'm all over the place and need to find some focus on all of this. My doc is of no use and again, literally just tells me "you are crazy" this is all anxiety. Thank you thank you all of you!

bm55 04/26/2011

I am on the graves_support@yahoogroups.com and there you can find out all of the supplements you can and cannot take.

deleted_user 04/26/2011

I just wanted to say I had to start anti depressants after I became hypo. I blamed it all on a job situation and when that ended i tried to wean off of them, didn't happen. I now realize I need them because of the changes hypo has done to my body. I hadn't realized that until all the information I recevied here on this board.

mmztcass 04/26/2011

Go to Thyroid 101 at:
http://www.livingwithgravesdisease.com/forums/forum/2-thyroid-101/

There you'll find more ideas about the triggers and such.

Boy I used to be part of the graves_support@yahoo.com. I stopped because it has so many people and I was unable to keep up with everything back then.

{{{hugs}}}

P.S. I did respond to you at the Graves' Disease board here, did you find everything I posted to you to look up?

mnov72 04/26/2011

Thanks mmztcass. Your information has been so helpful. I have to admit, I have not been able to locate the discussion on the graves support, as I am still learning to navigate my way through this site. (unfortunately, I am not the most computer literate :) Interesting, again, I spoke with my endo today and he said to stop looking for something wrong. He believe my issues are due to anxiety which manifest in all these physical symptoms. Now, granted, I am full aware of what depression and anxiety can do, however, i did tell him, the symptoms begin 1-3 hours after taking my med. He didn't want to listen. I just had my labs drawn today, so he said just wait and we will see what they show. The only thing he wanted to be sure of, was that i wasn't receiving too much synthroid. So, here I am again. I'm going to check out your link! Thank you again.

mmztcass 04/26/2011

If you can get the hard copies of labs, post them and we can help you decipher. Maybe your Free T3 is out of whack, either high or low. The FT3 is usually the one to feel the anxiety/panic attacks and such.

{{{hugs}}}

mnov72 04/27/2011

Hi mmztcass,
I have my results
Free T4 1.88 (high) range 0.82-1.77
TSH -3.6 range 0.450 - 4.5
T4 -10.6 range 4.5-12.0
T3 - 88 range 71 -180

any clue what this means? I know my doc will tell me everything is fine because my tsh is in the "range" > but something just doesn't seem right to me. The T3 is on the low side, T4 on the high side and the TSH...welll

mmztcass 04/27/2011

Would these labs be from taking the 137 mcg of Synthroid? If so, dose adjustments are needed to lower down the Free T4 which is high. I would aim it for the mid range to see how you do it there at.

Ask your doctor to order the Free T3 (Triiodothyronine Serum Free) instead of TT3 as it is not affected by our hormones, diet, etc.

If I were to look at your TT3, it looks like it is too low and anxiety/panic attacks can happen for some people when the T3 is either too high or too low. Perhaps you are not converting well. Either talk with doctor about adding Cytomel, a T3 med or look into Armour.

The TSH is not to be dosed. Here's a link explaining why:

http://www.stopthethyroidmadness.com/recommended-labwork/

The whole site of Stop the Thyroid Madness is very good to read as well.

{{{hugs}}}

bm55 04/27/2011

I agree the site mmztcass mentioned is great. It does however focus on dessicated thyroid, which some people do not need. Looks to me like you do well on only T4.

It is a great site though to learn about testing and all.

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