Fluxuating Thyroid

[Whitney86]

I first was diagnosed with hyperthyroidism in 6/2006. They first told me it caused my miscarriage right before I was diagnosed. My GP sent me to an endocrinologist because my TSH level was below range of the test. My endo then proceeded to just watch my thyroid thinking it would probably level out; however, 3 months later my TSH levels were in the 70's. The endo put my on Synthroid and it seemed like I was better. Then for the next 2 years my TSH levels continued to go in and out of range from hyperthyroid to hypothyroid. Finally, I was tired of this and decided to go to a doctor that was 1 1/2 away. He first did bloodwork and my TSH level was 36 and a month before that it was around .2. So he put me on Armour and also found my vitamin D was extremely low, so he put me on that too. Three months later I went back and my TSH was 2.0 so he was happy with that and I felt great. From that time in January to five months later, I have been extremely hungry and very achy and my periods have been abnormal (which these are things I went through off and on for a couple years before). I called the doctor last week to have my TSH checked again and the result was 5.5. He told me he had not seen this before and is guessing at what to do with me. My other endo was also confused with why my test results kept going all over the board. I can tell during a month different changes I go through with my thyroid and can tell when I am hyper(which I diagnosed as myself and told the doctor to check that) and when I am hypo. Anyway, I guess I am not knowing which step I take now. Do you have any recommendations of what I should do or where I should go?

[goolarra]

You all need to stop focusing on TSH and have your free T3 (FT3) and free T4 (FT4) tested.  TSH is a pituitary hormone.  It is several steps removed from what your thyroid is actually doing and a very poor indicator of your thyroid status.  Many issues (including pituitary) can make TSH irrelevant.  FT3 is the best indicator, followed by FT4.  T3 and T4 are the actual thyroid hormones.  The free's measure the amount of those two hormones actually available to your cells.  When you find the level of FT3 and FT4 that you are comfortable at, you can use those to make meds changes to keep you feeling optimal.

Also, if you're cycling between hypo and hyper, it might be a good idea to have thyroid hormones (TPOab and TGab) tested to confirm/rule out an autoimmune disease such as Hashi's.  Peaks and valleys in hormone production are a symptom of Hashi's.

Whitney86, your brief bout with hyper just before going hypo is a fairly common scenario.  It's typical of Hashi's and also other types of thyroiditis.

Check on the FT3 and FT4 situation.  If you haven't been being tested, go soon.

[Theresa44]

I can relate to both of you. My troubles started about 3 years ago when regular bloodwork showed TSH was irregular, it was lower than normal. I wad it checked 3 months later and it was normal. 3 months after that it was higher than normal. My GP then sent me for an ultrasound as a precaution. A 1.2 cm nodule was discovered. Since that time I have had blood drawn every 3 months and no results were ever the same. I was fluctuating between higher and lower than normal for the most part with the odd normal TSH reading.
This past October I started to feel quite ill, no energy, body aches etc so the GP sent me for another ultrasound. It showed the initial nodule had doubled in size on one lobe and there were 3 more on the other lobe. From there I was sent for a fine needle biopsy. The biopsy came back inconclusive. The surgeon suggested a Total Thyroidectomy, which will happen later this summer. I will find out then if it is cancerous or not.
I will be glad to have this behind me. I just hope the meds after surgery level out quickly...I am tired of feeling so tired.

[jkv44]

Hi Whitney,
I feel like I am looking at myself reading your posting. I'm just going through the diagnosis phase but the doctor told me that I was hypo for the most part. At times, I am sleepy all the time with aches and pains and can barely go out of the house. Last evening felt myself cycling through the hyper with the racing heart and fast pulse and couldn't sleep. My TSH levels like yours were all over the map. Only my GP didn't think I needed any meds until the rheumatologist suggested I see an endo and will do so in one week.

My rec would be to keep track of your symptoms and when they occur. My thyroid seems to go hyper around that wonderful time of the month when the hormones are active.

Anyone have this issue like we do? With the TSH levels all over the map.

It's so frustrating at this point don't know if I'm coming or going and ready to pull my hair out.

JKV44