Daughter’s results causing confusion - Hashimoto’s AND Graves??

[J972]

Hi everyone,

This post comes with a caveat. I’m sat looking through my daughter’s blood test results from the second part of last year. I’m doing this because she’s off college again with some sort of virus, this follows a week of Covid. I’m ashamed to say that I’m only looking at these results with the requisite level of scrutiny because, as many of you are aware, I’ve been poorly myself.

She just turned 18 and is currently on 75mcg of Levothyroxine.

July 2023

TSH 4.08 mu/L (0.47-3.41)

FT4 12.1 pmol/L (9.3-17.6)

Thyroid peroxidase concentration 201 ku/L (0.0-34.0)

She was started on levo (25mcg initially but we pushed for 50mcg). This was GP. Referral to endocrinologist who arranged the following blood tests in August 2023 but decided, once results came in, not to see her and to leave treatment/blood monitoring to GP:

TSH 2.88 (0.47-3.41)

FT4 12.3 pmol/L (9.3-17.6)

TPO antibodies 159.8 ku/L (0.0-34)

These two results confuse me:

FT3 5.4 pmol/L (3.6-5.7) (first time FT3 been tested)

Thyroid stimulating antibody TSI 1.92 iu/L (<0.56)

I confess to knowing very little about the significance of the latter test but a cursory glance at the internet and the forum links it to Graves??

She had a subsequent test at the GP in November:

TSH 3.34 mu/L (0.47-3.41)

FT4 12.2 pmol/L (9.3-17.6)

We requested a dose increase which was granted. She’s on 75 mcg.

Out of the blue yesterday she received a letter to attend an appointment with the same endocrinologist who decided they didn’t need to see her back in August. The appointment is for 14 February.

I’m concerned by the August blood test results, namely the TSI antibodies and the FT3, which appears confusingly high.

Your insight and suggestions are most gratefully received, as ever.

I should add that she’s also been tested for core vits and minerals - all woeful including below range folate and ferritin (July) and bottom of range Vit D. I can provide details if necessary but I just wanted to focus on the thyroid bloods initially.

Thank you.

Original title edited to reflect Slowdragon’s feedback

[SlowDragon Ambassador]

She needs TSI or Trab antibodies retested…..ideally before the consultation

But GP may not be able to order, may have to be via endocrinologist

How much levothyroxine was she taking when November test was done

How long has she been on 75mcg

Which brand is it

Bloods should be retested 6-8 weeks after increasing dose

Retest vitamin levels too

What vitamin supplements is she taking

Has she had coeliac blood test done yet

Or is she already on strictly gluten free diet

[J972 in reply to SlowDragon]

Thanks Slowdragon

She was on 50mcg of accord in November. We requested an increase which was reluctantly agreed to by unfamiliar GP. That’s teva, 25mcg. The fact that she’s on mixed brands was something I was planning to address - but then Covid threw a curveball in her scheduled blood tests which were due last week (which included vitamins). FYI she claims not to notice any problems with the either of the brands.

We’re delaying blood tests because of Covid.

I think I’ll contact the hospital (or ask my daughter to now she’s reached that magic age where, overnight children became responsible adults 🫣) and ask for the antibodies etc to be retested prior to the appointment. Better still, it’d be ideal if the appointment could be delayed but I know I’m being optimistic about that.

She was tested for coeliac in August, test was negative. She continues to eat gluten.

She supplements with the following and is pretty consistent, considering she’s a teenager:

3 Arrows Simply Heme

Thorne Basic B complex

Now vitamin D-3 & K-2

Might the elevated TSI and FT3 be suggested of a Hashi’s flare?

Thanks again.

[SlowDragon Ambassador in reply to J972]

She needs to stop vitamin B complex 5-7 days before test as contains biotin

Instead take daily folate and B12

Might the elevated TSI and FT3 be suggested of a Hashi’s flare?

Don’t think so

It is possible to have Graves’ disease and Hashimoto’s at same time…..treatment is block (with Carbimazole) and replace (with levothyroxine )

This would be managed by endocrinologist not GP

[J972 in reply to SlowDragon]

FYI I’ve edited the title of the post to reflect your comment.

[J972]

Oh, crikey.

Which begs the question…..why would the endocrinologist who ordered the tests decide initially that they didn’t need to see her?

[SlowDragon Ambassador in reply to J972]

Perhaps they missed the high TSI result

“Should have gone to SpecSavers”

[J972 in reply to SlowDragon]

I will pass on your suggestion 🥸

Although.

They referenced the fact that she had elevated TPO and TSI antibodies in a letter, shortly after the blood test results came in. Surely they understand the significance? Or could it be that my first endo encounter is with a diabetes specialist?

We’ve emailed the endo’s secretary, requesting a whole load of blood tests in advance of the appointment. I have no idea if this is the protocol, but, we can but ask.

[SlowDragon Ambassador in reply to J972]

Not uncommon for endocrinologist not to understand the difference in antibodies tests

TPO or TG antibodies can be high with Hashimoto’s and can also be mildly raised with Graves’ disease

TSI or Trab antibodies are only raised with Graves’ disease

[J972 in reply to SlowDragon]

Another thought, sorry.

Why would my daughter even have her TSI antibodies tested back in August? Is that standard or might it have been what’s referred to as a ‘reflex test’, due to her high in range FT3?

[J972]

Thanks Slowdragon.

Looks like I need to read up. Are you able to point me in a good direction?

[SlowDragon Ambassador in reply to J972]

Lots of resources about antibodies on here

Thyroid patients Canada

Website by Tanya Smith

thyroidpatients.ca/?s=TSI+a...

[J972 in reply to SlowDragon]

Thank you very much.