Can't figure out what's wrong with me? - Thyroid UK

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Can't figure out what's wrong with me?

Oatmeal11 profile image
5 Replies

Hi all, I was diagnosed with Graves in Feb 23 (though I'm not actually sure as I tested negative for thyroid peroxidase and TRab, feel like my endo just defaulted to Graves as I didn't have any nodules). I've been on carbimazole since and T3/T4 has been good, TSH has generally always been high and bouncing between 5 and 11ish. Recently I've been hit with this terrible case of brain fog - I feel like I'm forgetting everything and my brain is really slow. Also in the last week or so my heart rate has been higher than normal, for example I feel it beating hard when I get up from sitting, or when I'm walking. These are the main symptoms I got last year when I was diagnosed hyper. From my TSH I thought I was subclinical hypo and that's causing the brain fog but my heart rate suggests hyper? I had my last blood test on 19 Dec and my results were:T3 4.9 (range 3.1 to 6.8)

T4 18.6 (range 11.0 to 21.2)

TSH 5.39 (range 0.27 to 4.20)

I find it hard to tell what's going on as the TSH indicates hypo but the T4 is quite high. I'm having another blood test soon but can anyone help me figure out what might be happening? I've been on 2.5mg carbimazole daily for 2 months now so no recent change in meds. I'm going crazy and don't know whether to reduce the carbimazole or take more!

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Oatmeal11
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5 Replies
Buddy195 profile image
Buddy195Administrator

Welcome to the TUK forum Oatmeal11,

We are a friendly & supportive group & are here to help.

Many of us (myself included) have transformed our health and wellbeing by sharing results and following forum advice.

I was initially diagnosed as Graves with significant’hyper like’ symptoms - (inc weight loss, palpitations & eye swelling) but following advice from forum members, I tested antibodies privately and found I did not actually have Graves. Instead, I’m hypothyroid with Hashimotos (and Thyroid Eye disease). Remember, endocrinologists can be wrong (even good ones!)

I continue to experience ‘hyper like’ symptoms (elevated heart rate etc) when both over and under medicated thyroid wise, so I retest levels to check and adjust my medication accordingly.

What was your GP response to the tests on 19 Dec? Are you due to see the endo again? When are you due a retest?

Can you share past antibody tests? As you know, Graves Disease (hyperthyroidism) needs to be confirmed via positive TRab or TSI:

TRab

TSH receptor antibodies

TSI

Thyroid-Stimulating Immunoglobulin

TPO & TG antibodies may be Graves or Hashimotos.

 TPOab

Thyroid Peroxidase antibodies

TGab

Thyroglobulin antibodies

Keep posting if you have further questions 🦋

Oatmeal11 profile image
Oatmeal11 in reply to Buddy195

Hi Buddy195, thanks for your response. My antibodies were only tested once, soon after diagnosis, here are the results:Thyroid peroxidase - 13 (0 to 34)

TRab - 0.5 (0 to 7)

I don't think there was anything else done.

My endo said to reduce my meds from 5mg 5x a week to 3x a week - except I was already on 3x a week from the previous blood test so I'm not sure if I need to reduce further! (Will try and ask her after my next test) After each blood test she says I'm over medicated and to reduce my dose. To be fair the TSH is going down so this is working. I'm just confused as to why I'm getting hyper symptoms again though.

Buddy195 profile image
Buddy195Administrator in reply to Oatmeal11

I like to gradually reduce medication, as I’m very sensitive to change, so this may be an option instead of stopping carbimazole completely.

Both PurpleNails and pennyannie are knowledgeable with hyperthyroidism medication/ Graves, so I will tag them in to advise.

Apart from fast heart rate & brain fog, what other symptoms are you currently experiencing?

pennyannie profile image
pennyannie in reply to Oatmeal11

Hello Oatmeal and welcome to the forum :

I can't add much more at present - do you have on-line access to your medical records held at the surgery - as it would be interesting to see your original TSH + Free T3 and Free T4 at diagnosis ?

Initially both Hashimoto's and Graves ' present ' in a similar and why the antibody analysis must be run as without a positive and over range antibody blood test and the medical evidence of Graves the Anti Thyroid drug should not be dispensed.

What do you consider as hyper symptoms as this too can become confusing and low levels of core strength vitamins and minerals can compound ones health issues further -

Do you have any current readings for ferritin, folate, B12 and vitamin D ?

SlowDragon profile image
SlowDragonAdministrator

Essential to also test vitamin D, folate, B12 iron and ferritin

Low vitamin levels extremely common with all thyroid disease

Low iron/ferritin can cause high heart rate

Essential to test TPO and TG antibodies for autoimmune hypo thyroid disease….aka Hashimoto’s

Hashimoto’s frequently starts with transient hyperthyroid results and symptoms before becoming increasingly hypothyroid

This is possibly your situation

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test

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

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

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