Time to see an Endo? Hypo issues

[dbreweur]

Before I get started, I should clarify that I’m in the US but there aren’t many active forums like this for us. I’m hoping you all can offer advice regardless.

Back in 2016-2017, I saw my GP because my hair was coming out by the handful. At roughly 26 years old, this scared me. The doctor ran basic blood work and told me that I technically had Subclinical Hypothyroidism (my TSH at the time was 5.64, so not terribly high but definitely out of range). At the time she also thought I might have a goiter, ordered an ultrasound which came back normal. I ended up with a prescription for 25mcg of levothyroxine and sent on my way.

A year later, I ended up seeing an Ear Nose Throat doctor for dyspnea that we thought might be related to my GERD diagnosis (it was not) and he ordered testing for thyroid antibodies, which came back negative.

About a year after that, we had to move and switch providers. My new GP ran the test, I believe my TSH was still holding steady at 1.7 - 2.0. The next summer I had to have the same test as routine protocol to refill my Levo prescription, and this time, my TSH had shot up to nearly 4.3. That’s still within the labs range of normal, but high for me. When I asked the doctor who reviewed the test if this was something we should be concerned about, he said no and that they didn’t worry until it was well over 5.0 (this was in June or July 2019).

Now, I’ve noticed that my symptoms seem to be coming back - my hair is thinning again, I’m cold all of the time, my skin is breaking out in rough scaly patches (GP says it’s eczema but I’ve NEVER had it prior to this year), I’m gaining weight even though my diet hasn’t changed (which isn’t great since I gained an easy 50 pounds when I initially started the levo).

I’m thinking of asking my doctor for a referral to an Endocrinologist to see about redoing the tests or getting additional testing,

What are your thoughts and recommendations?

Advice is appreciated (the only person I know with thyroid illness is my SIL and she doesn’t treat hers properly and is frequently ill because of it)

[dbreweur]

I forgot to mention in my post that I’ve had lifelong digestive issues that have seemingly got worse since I began treatment for the hypothyroidism. My gastro doc said I have IBS - could that be tied in to the thyroid issues?

[Treepie in reply to dbreweur]

It could well be. TSH is only part of the story. You really need also to have results and their ranges ,as labs differ , for FT4,FT3, ferritin,folate,B12 and D3. Also antibodies which might confirm Hashimotos for which many, but not all, benefit by being gluten free.

Being on levo ,your TSH is too high it should be about 1 or below .You need more levo.

[shaws Administrator]

The endocrinologists in the USA may be more knowledgeable than in the UK (I mean with regard to diagnosing a patient and in UK it has to reach 10 before we're diagnosed).

They seem to only look at the TSH (thyroid stimulating hormone) and decide from it alone whether or not the patient has a problematic thyroid gland.

First you need a Full Blood Test and the procedure to follow is:-

The earliest possible blood draw, fasting (you can drink water) and allow a gap of 24 hours between last dose of hormone replacement (usually levothyroxine). This give us the best chance of being diagnosed as TSH drops throughout the day. A full thyroid function test is:-

TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

If antibodies are present, no matter what your TSH is, you should be prescribed 50mcg of levo and have a blood test every six weeks, following advice above. Antibodies present would mean an autoimmune disease called Hashimoto's but treatment is the same, i.e. levothyroxine. Going gluten-free can help reduce antibodies which attack the thyroid gland and wax and wane.

You should also check B12, Vit D, iron, ferritin and folate. All have to be optimum as deficiences can also cause symptoms.

Always get a print-out of your results, with the ranges. Ranges are important and enable members to respond,