Hoping someone might be able to give me some insight on my TSH levels after partialthyroidectomy.

[dakiddo311]

I realize there really is no "standard" normal range for thyroid labs because every provider seems to differ. I'm in the US, and the "within range" for TSH is 0.450-4.500 uIU/mL. I had a partial thyroidectomy due to hyperthyroidism and goiter with hot nodules. This was in 2004...so over 10 years ago. I would think that over the years my TSH would be more towards hypothyroid, but since 2013, it has consistently bounced between 0.749 and 0.339. In 2013 I had my TSH level checked 3 times, 3 times in 2014, and once so far in 2015--just recently and my result was 0.723.

In Oct 2014 it was 0.965

My T4 Free this most recent time was 1.34 (within range is 0.82-1.77ng/dL) but noticed it has increased each time. Oct 2014 it was 1.07

My Free T3 is 3.6 (within range is 2.0-4.4 Pg/mL) and noticed this has also increased each time.

Oct 2014 it was 3.2

I have severe symptoms of hyperthyroidism and have not felt "well" or normal in several years. I used to be so laid back and just went with the flow, I was patient and kind. Over the years I have had major depression and terrible anxiety. I am easily irritable and snap at my family for minor things. I struggle with insomnia and lost about 20 lbs in one year. My normal weight is 125-130 and I'm 5'7. In Aug of 2014 I was down to 118. My GP sent me to an endocrinologist who did labs and were said to have come back normal and I was told that my "symptoms" were not thyroid related. By Oct 2014, I was down to 106. I explained to my GP that I didn't feel like myself at all and didn't know what to do. He referred me to a different Endo, who ended up also saying my labs were normal as well. So after October, I stopped trying to get answers.

But in July this year, I just could not take how I was feeling. I am sweating a lot and I sit at a desk all day. My hands and feet are ALWAYS cold no matter what, I am so tired all the time and even have heart palpitations. I saw my GP, he ordered my labs (above) but also said he was referring me for a consult with a surgeon who works with people who have endocrin disorders, hyper/hypo/Graves disease/Parathyroid and Pituitary gland disorders. I'm just very nervous because I am almost expecting her to say --it's not thyroid related. Does anyone have any advice for me? I would really appreciate it. Thanks!

Julie

[shaws Administrator]

Hi Julie

I bet you ten-to-one that you are hypothyroid and your doctors wrong because the have been told only to take account of the TSH and sometimes it doesn't rise enough.

Before levothyroxine was introduced along with blood tests in the 50's/60's we were diagnosed upon symptoms alone and given a trial of thyroid hormones. Nowadays all we have are suffering people who are at their wit's end trying to figure out why they have all the symptoms which not one medical person are aware of, yet hypthyroid or hyperthyroid patients are familiar with.

If your doctor is not responsive some of our members are forced to buy their own products and many have found they are regaining their health. Excerpt:

Hi Pat, I had a partial thyroidectomy 29 years ago - they removed the right side of my thyroid gland because of three nodules that I had there after the birth of my third child. I was in the hospital for about five days and then sent home with a prescription for 100mcg of Oroxine which I was told there was no hurry to start taking but start taking it within the following three weeks. I was told that by taking the Oroxine the remaining side of my thyroid would get the message to just go to sleep and I would need to take the Oroxine for the rest of my life. I have not had any problems with taking the Oroxine.

These days I notice that things have changed for patients with partial thyroidectomies. I have personally observed people with only half of their thyroid remaining being told by doctors that there is no need for medication as the half thyroid will be able to cope with all the work. Wrong! I have seen these people gain massive amounts of weight whilst their doctors observe only their TSH readings and then offer them 'Blood pressure medication', 'diabeties medication' and 'cholesterol medication' - all the time encouraging them to do the impossible and lose the weight

patient.info/forums/discuss...

worldthyroidregister.com/Go...

The following is from Dr Skinner (RIP) who I think was the only doctor in the UK brave enough to stand up for patients. This is one of his statements:

There is a further problem that when a patient is diagnosed as hypothyroid many patients receive too low level of thyroid replacement through servile reliance on thyroid chemistry with (often) cavalier disregard of how the patient feels accompanied by an implicit and bizarre belief that a level of thyroid hormone is a better index of wellbeing than the patient’s own view of his/her wellbeing.

This situation has arisen from the mindless deification of ‘evidence-based medicine’ which usually means laboratory-based-medicine where one chooses the evidence which suits and ignores evidence which doesn’t suit. There is no evidence that the efficacy of thyroid replacement is better correlated with levels of thyroid chemistry than with the initial clinical picture nor clinical outcome and in a small pilot study the author has provided preliminary evidence of this assertion.

[Clutter]

Julie, Did you test positive for Graves antibodies? FT4 and FT3 are currently well within range but if they are increasing with each test and you are positive for Graves I think you will be becoming hyperthyroid again. TSH fluctuates according to time of day so levels do change if you test at different times. TSH also falls as FT4 and FT3 rise.

Doctors don't give much credence to the impact antibodies can have on health when thyroid levels are normal, possibly because they can't treat the antibodies and can only treat the resulting hyper or hypothyroidism.

I had Hashimoto's and was also told symptoms which included severe palpitations were non-thyroidal as bloods were euthyroid. Partial thyroidectomy to remove a large nodule made no difference but after completion thyroidectomy symptoms improved. I'm inclined to think that removing the target thyroid meant I no longer suffered Hashi attacks and/or, despite euthyroid bloods previously, thyroid replacement was helpful.