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Why is my TSH so unstable?

By July 13, 2010 - 11:15pm
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I had to have my thyroid removed back in 2005 due to a cancerous nodule, it took a year to get my blood levels decent or more stable which include (TSH, T3 Uptake, T4 orThyroxine, and Free Thyroxine Index). I am currently between 200-225mcg Synthroid and 5mcg Cytomel and my TSH is always off.

I am a thyroid cancer survivor, I have read and heard from a doctor who looked at my blood work and said that an ideal TSH for most people is 1-2 but for people who have had cancer before it can be or should be just at 1 or slightly below 1 right before you would be considered hyperthyroid. I have had my primary doctor monitoring my blood-work since 2006 and since my TSH has been yo-yo lately, she wants me to follow up with an endocrinologist.

Despite this, I have periods of energy but they are always short-lived there are days where I am so exhausted I can't stand it. I want this endo to look at other things besides the standard thyroid blood levels. I wonder if there is a problem with my ACTH levels, I watched a program on discovery health about a lady with a hypopitutary, she takes one med for thyroid and one for adrenal and she's fine. This was found when her ACTH levels were checked which look at the adrenals too, I only will know if I ask the endo to look at other things that may be causing this and if there is any med that can help my thyroid meds work better or maybe I need Armour thyroid like some people, I just don't know.

Has anyone else had a similar experience? I also happen to be a young guy I was in my 20's when my thyroid was removed. Thyroid disease runs on my moms side of the family mainly.
My aunt was diagnosed as Hashimotos, she is in her 60's they just keep her monitored, her two daughters which are my cousins were diagnosed with thyroid disease. One of them had cancer and surgical removal of the thyroid gland and is on hormone replacement, her son one of my second cousins had to have his thyroid removed and was diagnosed with Graves' Disease and the second daughter had severe hyperthyroidism in which they killed her thyroid with radioactive iodine I believe, they are all on hormone replacement except my aunt.

I know its long but just a little history there. Below I will type in my latest labs (there are four total reports) blood was drawn every 6-8 weeks. Also, I always take my thyroid hormone meds after the blood draw for that day. But in this last blood work I took it at 4am early that morning and got my blood drawn at 3pm that same day.
I am unsure if that would affect the level or not. The lab tech wasn't sure but said it probably wouldn't.

I know they also say that you should try to take your thyroid hormone around the same time every day and at least 1-2 hours away from food, other meds, or vitamin supplements. For some vitamins I heard 3-4 hours. But I have always had issues with this but mostly I give an hour or two. And sometimes I may not get my thyroid med till later in the day which is better than missing but supposedly not as good as taking it in the AM hours. There have been times where my TSH was steady. I have looked at more past copies of blood work I got from my doctor and sometimes it was 0.94, once it was 1.53 another time 2.42. But most of the time too low or too high.

Here are the reference ranges according to my lab:
TSH: 0.45-4.50, Thyroxine(T4): 4.5-12.0, T3 Uptake: 24-39, and Free Thyroxine Index: 1.2-4.9

These below are my latest results:
Jan 19 2010: TSH : 0.16
Thyroxine(T4): 7.9
T3 Uptake: 35
Free Thyroxine Index: 2.8

Mar 10 2010: TSH: 0.34
Thyroxine(T4): 8.0
T3 Uptake: 36 Free Thyroxine Index: 2.9

May 25 2010: TSH: 18.99
Thyroxine(T4): 6.2
T3 Uptake: 36
Free Thyroxine Index: 2.2

July 9 2010: TSH: 0.077
Thyroxine(T4): 9.7
T3 Uptake: 35
Free Thyroxine Index: 3.4

Now I thank God that my other values (T3 and T4) are always in range.

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EmpowHER Guest

I was diagnosed w/Hashimoto's back in 2012, however, my hormone levels were as if I had Grave's disease instead but symptomatic w/hypo. The Endo's couldn't figure out why and only had me back for blood tests. It was very strange contradiction. Over about a 3-4 month period my levels went back to normal. Therefore, I have the diagnosis, not having to take medications, but yearly I have my blood checked and my ranges have been "normal"; as of 4 months ago. I always test high TSH >10, t3 and t4 are always normal. PCP started me on medication and blood work every 6 weeks. For the first 3 times, I went from (TSH only checked) >10, 7, >3, 31. PCP though it was a lab error and also tested t4 and t3. Labs came back w/TSH now at 34 and normal t3 and t4. I go through times I have energy and other times I come home from work and sleep until the next day. I am never hungry and don't eat, but I am not on an exercise regimine either and have gained 50+ pounds over the last 4 years. Some due to poor diet (not eating) and I don't do cardio because I sweat so much its completely embarrassing, at the time the sweating started I was in my last 20's. It was gross. I am now going back to a new endo w/the University I work for in hope to finding some answers. I can tell my face is a bit swollen and my thyroid is enlarged. What I want to know is if any persons' w/Hashi's has had such an upswing in the TSH but normal T3 and T4? I know I won't get into a specialist until I a few months (new patient and all). Feedback is much appreciated!! I've been diagnosed with other medical conditions. fibro, starting to lose my train of thoughts when in the middle of convo's, celiac, patellarfemoral syndrome, SI joint dysfunction, I was ANA positive but nothing came from that, I have nerve issues, tendon/ligament pain, stiffness, and no family history of Hashi's on either side of the family. Did I mention I'm only 35 and this all started when I was about 19. Due to my age, no one took me seriously either. I did read a few white pages on thyroid disorders being linked to misdiagnosed fibro, visa versa. I honestly am not sure what the root cause of all of this is. Just the thyroid?? (except my knees)

September 12, 2017 - 10:26pm
Expert HERWriter Guide Blogger

Hi mateoantonio - You've certainly been through a lot and it sounds like you've done a lot of work to learn more about your condition, your tests and how to advocate for yourself. Good for you!

Your plan to discuss the unstable TSH levels with an endocrinologist is a good one. The spike on May 25 seems out of line with your other tests, and may be due to a lab error. In terms of the range in levels, have you had all of your tests done in the same lab? While it would seem that all labs would use the same standards that's often not the case and for the patient it can result in a wide variety of ranges being provided.

There's a nonprofit website supported by laboratory professional associations that provides a lot of helpful information about lab tests, including detailed sections on tests for thyroid conditions and I think you'll find it very useful. http://www.labtestsonline.org/

Do you have any type of support group to help you in dealing with being a cancer survivor? I too am a cancer survivor, and get a lot of invaluable information and guidance from fellow patients. There's a great group for young people that I like, and you may like it too - http://i2y.com/
You may also find it helpful to become a "friend" of the American Thyroid Association and get on their mailing list so you get the latest treatment news. http://www.thyroid.org/friends/subscription/subscription_services.html
There are also a couple of foundations that may interest you: http://www.thancfoundation.org/
and http://www.checkyourneck.com/ Through these groups you can learn what other survivors have done to deal with the dietary changes and other lifestyle concerns that are part of recovery and staying healthy. The Light of Life Foundation has a really comprehensive Q&A section that others have said was very helpful.

Will you let us know how your appointment goes with the endocrinologist? We wish you the best.
Take care, Pat

July 14, 2010 - 5:45pm
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