Hypothyroidism and PA connection

Hi Everyone...I just joined your group today. I live in the US and am 5 hours behind you. I also belong to the PA group and joined that a while ago. I have had hypothyroidism for at least 25 years and have managed it with medication (I'm now strictly on Synthroid as additives in the generics affect me). Two years this comin January I was diagnosed with autoimmune atrophic gastritis and then a year later with PA. Since then my TSH levels have been out of whack (most in the normal range). It is believed that now the Synthroid is not absorbing normally as it once did prior to the aag diagnosis. For example, over the last 7 tests the following are the results:

8/7/21 - 1.9

10/11/21 - 4.2 (high)

11/24/21 - 1.6

2/7/22 - 0.748

4/6/22 - 2.230

5/16/22 - 3.4

8/23/22 - 1.53

Medication has only been changed by 1/2 pill (I take 88mg 6 x week and either 1/2 or none on Saturdays depending on what the doc is trying to accomplish with me at the time). I am very sensitive when my numbers fluctuate high or low from around 2.0. My endo left the clinic a month ago and I have not yet met the new one. But before she left she said that I can control by symptoms whether I take 1/2 or no pill on Saturdays. She was never able to tell me why my test results were all over the place each time I was tested. Can you help me understand why this might be happening as well as what questions I should ask the new doc when I see her in about a month? Prior to PA my meds kept be pretty even for greater lengths of time. Right now I have great fatigue when the number is higher than 2 and agitated when too low. And then I can't tell if my symptoms are from the B12 deficiency or the thyroid issue. I do have a standing test order for every three months. Thank you!

[Jazzw]

Hi Justme20212954–welcome.

I’m going to take a guess that those results are all TSH results—is that right?

Does your doctor ever do FT4 and FT3 tests? Because if anything, they’re more important than the TSH test. They tell you whether you’ve got enough thyroid hormone on board, whereas the TSH is a very poor indicator for that once you’re on thyroid hormone replacement.

For a start, TSH varies considerably throughout the day, so if you’re testing at different times of the day each time it’s going to be hard to draw any firm conclusions about what’s going on. It’s lowest early morning and rises into the afternoon. And it can vary by several points during the day—that alone may account for the difference.

It sounds like you have a doctor who’s obsessed (like many of them sadly are) with keeping TSH in a particular spot. When actually, what you’re looking for is a levothyroxine dosage that keeps FT3 and FT4 towards the upper end of their respective laboratory reference ranges. And perhaps even more importantly, a dosage that makes you feel well!

[SlowDragon Administrator]

Just testing TSH is completely inadequate

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

 

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

What vitamin supplements are you currently taking…..apart from regular B12 injections

Have you had thyroid antibodies tested

Have you had coeliac blood test done

Are you on, or have you tried, strictly gluten free diet

 

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies 

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. 

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis 

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

as you have PA (autoimmune) it’s virtually guaranteed your hypothyroidism is autoimmune too

Recommended on here that all thyroid blood tests early morning, ideally just before 9am and last dose levothyroxine 24 hours before test 

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism 

thyroiduk.org/wp-content/up...

[Batty1]

what are your test for? Synthyroid does have additives one of them being Acacia which is pure poison.

[terebol]

The first two responses are spot on. You need to find an endo who does not believe the sun rises & sets w/only TSH testing. That is typical of most endos (gp's, too). I can't speak to your roller coaster tsh levels, but when thyroid meds are optimized, your TSH will be suppressed. That will alarm an unenlightened dr.! Also, check out Dr. Isabella Wentz (thethyroidpharmacist) For me, I just don't tolerate synthetic thyroid meds. I use NP thyroid (I am in US, also)