Raised TPO Ab normal TFTs

[Erin29]

Hi, first posting. 46 years old female, Graves disease 6 years ago (with odd/paradoxical symptoms at the time including weight GAIN), treated with carbimazole and TFTs have remained in normal range for last 4 years. BUT, my TPO antibodies are raised at 400 (range 0-34), thyroglobulin antibodies normal 63.7 (range 0-115). I now have a lot of HYPOthyroid symptoms - raised cholesterol, fatigue, brain fog, weight gain, constipation, cold intolerance and newly eyelid/brow puffiness, particularly bad under right eyebrow. Perimenopausal too and started HRT 2.5 months ago which helped with the cold intolerance a little bit but nothing else so far. GP not interested in any thyroid treatment with normal thyroid levels (TSH 1.86 (0.27-4.2), T4 16.7 (12-22, T3 4.2 (3.1-6.9) ). Any advice gratefully received as struggling with symptoms! Interesting genetic link - my mother had Graves at same age as me (40years) and in her later years presented as profoundly hypothyroid but again her thyroid tests were in "normal range" so never treated (and antibodies never tested).

[Marz]

Perhaps it was Hashimotos 6 years ago - and you were incorrectly diagnosed/treated. Do you have tests results/ranges ftom that time ?

[Erin29 in reply to Marz]

Hi, yes I wondered that. I remember my TSH was <0.01 ! But no antibodies done at that time unfortunately....

[Marz in reply to Erin29]

With Hashi's there can be a Hyper stage initially. Was the FT4 and FT3 tested ?

[Erin29 in reply to Marz]

Gosh it really feels like it started hyper then quite quickly turned hypo when I started to gain weight (which weirdly then came down with no effort when I stated carbimazole). Yes the FT4 and FT3 were tested at the time, and they were impressively high, but annoyingly I can't find the exact numbers right now (I blame the brain fog!)

[greygoose]

Hi Erin29, welcome to the forum.

So, how was your Graves' diagnosed? Did the test the Graves' antibodies: TRAB and TSI? Because it rather sounds like you didn't have Graves' at all, but Hashi's - aka Autoimmune Thyroiditis - as witnessed by your high TPO antibodies.

Hashi's usually starts with a false 'hyper' phase, and unfortunately, doctors rarely seem to know the difference and automatically assume you have Graves' without doing the proper testing.

FT4: 16.7 pmol/l (Range 12 - 22) 47.00%

FT3: 4.2 pmol/l (Range 3.1 - 6.8) 29.73%

You're FT3 is pretty low, and that's what's causing the symptoms. And your FT4 is not a lot better. But doctors only look at the TSH. And yours appears to be good on that test. But, what time of day did you have the blood draw for that test? Because TSH is highest before 9 am and then drops to its lowest around midday.

And there's not a lot you can do about it. Although symptoms may be exacerbated by low nutrient levels. Have you had your vit D, vit B12, folate and ferritin tested? If not, that should be your next step, and then supplement as needed - we can help you with that.

Apart from that, just be kind to yourself, don't push yourself, get as much rest as you can, and good, nourishing food. And absolutely no calorie-restricted diets for the weight-gain! You need those calories more than ever, now.

[Erin29 in reply to greygoose]

hi thank you so much for your response. It makes a lot of sense that it could have been Hashimoto's all along. TSH was done in morning but definitely not before 9am. Have had vit D (low at 20), and ferritin (low at 22 but I see from old notes it was 6 when I had "Graves") - trying to correct both of these, B12 and folate were normal. Even once I correct vit D/ferritin, I am guessing no-one is going to start me on replacement thyroid hormones as long as the TSH is normal?

[greygoose in reply to Erin29]

With high antibodies the TSH would have to at least go over-range on two consecutive blood tests. But having the blood draw before 9 am will give you a greater chance of that happening.

[Erin29 in reply to greygoose]

Understood! So helpful, thank you

[greygoose in reply to Erin29]

You're welcome.

[PurpleNails Administrator]

welcome to forum

did you stop carbimazole long ago? & currently on no thyroid medication or replacement?

Graves often have elevated TPO, but doesn’t confirm Graves. Graves must be confirmed with positive TRab or TSI antibodies. Was that done when diagnosed?

[Erin29 in reply to PurpleNails]

Hi, yes I stopped carbimazole in 2020 and no thyroid meds since. No antibodies were done at the time of the "Graves" episode. Agree that it seems less and less likely it was actually Graves.

[SlowDragon Administrator]

you need vitamin D, folate, B12 and ferritin levels tested

Also coeliac blood test BEFORE trialing gluten free diet