Questions about Hypothyroidism - Could it still be Hashi's? Need to see an endo?

[dbreweur]

History, since my last post was many months ago:

The following are my various TSH results, though I wasn't formally diagnosed with Subclinical Hypothyroidism until April 2016 (Yes, I know my TSH was high in July 2015, but since my doctor at the time didn't say anything, I didn't think much of it. I now know better and wish we could have got a headstart on treating this many months prior to when we did). I have been on the same dose of 25 mcg Levothyroxine since April 2016, with the exception of roughly a month when I gave Armour Thyroid a try - It didn't work out for me, and I went back to the Levo. I also had a test for Thyroid Antibodies in August 2016, but came back with values of less than 1 for Thyroid Peroxidase and Thyroglobulin Antibodies - which apparently means that I do NOT have Hashimotos (despite showing just about every single symptom - I don't necessarily trust the facility where it was tested, but I couldn't afford to go anywhere else). I recently found paperwork I had missed from this time period and the doctor that ordered the antibodies test had me marked down on the paperwork as "Euthyroid Hashimoto's". That was the first and last time it was mentioned on any official documents.

July 2015 - 5.41 TSH, 0.9 Free T4

April 2016 - 5.64 TSH, 1.2 Free T4

July 2016 - 2.36 TSH, 1.31 Free T4

October 2016 - 2.77 TSH, 1.33 Free T4

April 2017 - 2.48 TSH, 1.44 Free T4, 3.4 Free T3

February 2018 - 1.77 TSH, 1.3 Free T4

April 2018 - 1.976 TSH

July 2019 - 4.042 TSH

I asked about the spike in TSH in July 2019, asked if maybe it was a sign the meds weren't working anymore or if it could be tied to some stress I was going through, and the person I spoke with (not my doctor but another doctor at the same clinic) said that it was within their testing range and they don't typically worry about variations until it is outside of their testing parameters. I do know, however, that I feel better when I'm around the 1.5 - 2.5 TSH range. The April and July results were done at a different medical facility where apparently testing for T3/T4 is not standard with a TSH test.

I've been sickly since probably June or July 2016 with various minor illnesses - colds, coughs, dizziness, headaches, fatigure - but since my levels stabilized, the GP's I've been seeing pretty much brush it all off. I'm 29 years old and have bald patches now due to the thinning of hair that I really do feel is related to my thyroid issues (not to mention the 50 pounds weight gain that I put on in just 6 months when I began treatment with the Levo after maintaining the same weight for 10+ years). It sounds incredibly vain, and I realize I shouldn't care about little things, but the hair loss is hitting me hard.

I'm thinking of asking for a referral to an endocrinologist when my insurance sorts itself out in April, but am just afraid that he'll agree with my GP's that as long as the TSH falls within testing parameters, I'm allegedly okay.

Have any of you had good experiences with an endo after not-great experiences with a GP who is clearly clueless about hypothyroidism? Is it possible that this IS Hashimoto's despite the antibody test being negative?

((I'm in the US and realize that this site/forum is geared towards the UK, but we don't really have any forums like this))

[dbreweur]

Forgot to add that I've also recently began experiencing some minor swelling in my ankles with the pitting edema that is relieved by rest/putting my feet up. This may or may not be an issue with the heart that I am pursuing - but could it just be my thyroid out of sorts?

I've had some lingering chest aches since January, but the doctor I saw more or less refused to run bloodwork since my tests back July/August 2019 were all normal (which blows my mind; Blood work can change from day to day, let alone several months in the future, especially when a patient is symptomatic).

[williamsad19 in reply to dbreweur]

25mcg is only a starting dose for the elderly or those with heart problems, no-one should ever be left on that???

[dbreweur in reply to williamsad19]

I've no idea. I think when my first GP saw that my levels were in range with the initial 25 mcg dose, she just ran with it (She was not a good doctor, in my opinion) and every doctor since just went with it as well. I'll see about getting an increase when I'm able to see my actual GP in April

[greygoose]

Sorry, but we absolutely need the ranges for those results. There are no international standard ranges, they vary from lab to lab. So, we need the ranges that went with your results.

I would just say that one negative antibody test does not automatically rule out Hashi's. Did you have both antibodies tested: TPO and Tg? Either could be high indicating Hashi's, so both need to be tested. Also, antibodies fluctuate, so may be low on one test and high on the next one. Plus the fact that 20% of Hashi's people never have over-range antibodies. So, yes, it could still be Hashi's.

[dbreweur in reply to greygoose]

My mistake

For the results from July 2015 until February 2018, the TSH range is 0.3 to 4.0. The Free T4 range is from 0.8 to 1.5

The lab from April 2018 forward has a TSH range of 0.3 to 5.0. I'm not sure what their Free T4 range would be as they haven't tested it yet.

On one hand, I hope it's just generic, run-of-the-mill hypothyroidism, but Hashi's just seems to fit my symptoms better. All know is that I'm tired of feeling not-great all of the time.

[greygoose in reply to dbreweur]

Why do you hope it's not Hashi's? Why do you think that Hashi's is worse than any other form of hypo?

And, what do you think the Hashi's symptoms are? As far as I know, there are no symptoms that are specific to Hashi's, you just get hypo symptoms from the low T3, as you would with any other form of hypo. So, I'm a bit confused, there.

[dbreweur in reply to greygoose]

And yes, the antibodies test checked on both TPO and Tg and said the values were <1 on both

The range for Tg is < or = 1, and the TPO range was <9 being considered normal/negative.

[greygoose in reply to dbreweur]

OK, so that is negative. But, as I said, that does not completely rule out Hashi's.

Have you not had a blood test since July last year? You were very under-medicated on that test, even without the FT4. You do need an increase in dose.

[SlowDragon Administrator]

Just testing TSH and Ft4 is completely inadequate

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

[dbreweur in reply to SlowDragon]

I've been getting it tested first thing in the morning with the previous dose of levo at least 24 hours before hand on the advice of my first doctor (He also had me fast before most testing, and the habit stuck).

I'm with a temporary GP right now due to insurance issues, but when I get back to the GP that I trust in April, I'm going to see about getting those tests and a referral to an Endo since I'm still symptomatic.

[SlowDragon Administrator in reply to dbreweur]

Strongly recommend getting full thyroid and vitamin testing privately ASAP,

Last result TSH 4 is far too high