Overactive thyroid

[SMH2]

Hi everyone I am looking for some help or advice please. I have an overactive thyroid and am desperate not to be taking the carbisimole. I'm currently on 25mg. My blood readings are T4 25.7 pmol and TSH is less than 0.01. My question is, are the readings showing this as significant does anyone know as I don't feel I'm getting any symptoms and hate the thought of chemicals inside me. I am waiting for endocrinologist appt. Thank you very much for your help.

[pennyannie]

Hello SMH and welcome to the forum :

Can you please share with forum members your blood test results -

these should be the results and ranges of a TSH - T3 - T4 - and which ever antibodies were found positive and over range in your initial blood test.

What symptoms took you to the doctor and what other medications are you taking ?

If there is no physical swelling around your neck and no issues swallowing or breathing there are 2 possible causes of this phase of ill health - both Auto Immune Diseases - so there is no cute as such - and one has to learn and take some control of ones own AI triggers.

Graves is considered life threatening if not medicated as the T3 and T4 thyroid hormones keep rising higher and higher - putting undue strain on your heart - and an Anti Thyroid drug - such as Carbimazole is prescribe to semi-block ones own new daily thyroid hormone production and slowly the thyroid hormones fall back down into range with symptoms alleviated.

If with Hashimoto's and the AI thyroid attacks you are liable to erratic own thyroid hormone production and ' swings ' in T3 and T4 levels - but swings always swing back and are transient - so Hashimoto's is not initially medicated - until such time as your thyroid becomes so damaged and less productive and you become hypothyroid and need to be prescribed thyroid hormone replacement.

In order to know which AI you are dealing with we need to also know which antibodies were found positive in the initial blood test -

Do you have any antibody results and ranges there for TPO / TgAB / TSI / TRab / or written as something like TSH Thyroid Receptor with a single number and cut off number?

[PurpleNails Administrator]

Welcome to forum SMH2

Do you have any other test results?

Ranges are needed with every results because ranges vary between labs.

For full thyroid you need TSH, FT4, FT3, TPO & TG Antibodies.

Your TSH is undetectable but this can occur for lots of reasons. High FT4 & FT3 can be temporary. The TSH can stay low. By most ranges your FT4 is elevated.

If continuous hyper Graves is suspected by Doctor you should have TRab or TSI Antibodies tested as soon as possible.

Usually symptoms occur with abnormal or fluctuating levels. Sometimes if gradual you adapt & it can go unnoticed for longer.

If your hyper is continuous it’s important to treat the levels.

Have any nutrients been tested, folate, ferritin. B12 & vitamin D?

If you have positive antibodies recommend you have a gluten screen.

[SMH2 in reply to PurpleNails]

Hello there thank you both for your replies

As suggested I got my antibodies tested on 7/2/25. It shows that my serum thyroid peroxide antibody concentration is 35 kU/L

I also got re-tested for my thyroid after taking 15 mg of carbizimole for a few weeks and my levels have improved - T4 level is 8.2 pmol and TSH level is 2.09.

I know this might sound a silly q, but does this mean I don't have hyperthyroidism any longer. The Dr said to half my carbizimol.

Wish I knew what these test results mean. The drs never explain anything to me!!

If anyone else could shed any light I'd be so grateful.

Drs have not been at all helpful

[PurpleNails Administrator in reply to SMH2]

Could you add lab ranges with your results. Ranges vary between labs so always needed.

35 TPO Antibodies is that positive or negative?

By most ranges your FT4 is low if not under range & this means you’d be hypothyroid, but it doesn’t mean your hyper is definitely stopped (yet) it means your on too high dose of carbimazole.

How long were you on 25mg carbimazole?

TPO if positive (depending on lab range) mean you have autoimmune. You can have TPO with both Hashimoto’s & Graves.

[SMH2 in reply to PurpleNails]

Thank.you for your help! Yes my ranges are: s Serum thyroid peroxide 35 kU/L 0-33) above high TSH level XaELV 2.09 miuL (0.27-4.2)

T4 level 8.02 (11 - 22)

I was on 10 mg of carbizimol from 17/12/24 to 14/1/25 but had to increase to 15 ml after being sick twice a day despite not being able to keep food down and terrible migranes

The Dr always wanted me on 20ml carbizimole nlbut I did never do this as been worried sick about the weight going on .

I wonder if this means graves or under active...

[PurpleNails Administrator in reply to SMH2]

So FT4 very low. you likely feel very hypothyroid. TPO elevated. You need TSI or TRab antibodies tested to confirm Graves.

You can’t take half 25. Unless you split a 5mg & take 10 & 2.5. Would be easier to take 10. or would be better to take 5mg 2x per day.

If you were taking 25mg carbimazole for under a month, the drop is too fast, if you were taking for 6 weeks plus then you were due a dose adjustment.

Do you have another thyroid function scheduled ? TSH, FT4 & FT3 if possible.

[SMH2 in reply to PurpleNails]

Thank you for this! I was worried to take 10mg as 7.5 mg is a bit lower amd.i don't mind cutting in half. Theyre testing me again on 28th March

I also have an endocrinology appt this coming Fri

I wonder if they'll do further tests as I don't know what to expect . I feel like stopping these carbizimole altogether as I struggle taking them and don't want to be hypo.

So worried abt putting weight on .....that's why I never took.the recommended dose of 20mg

[PurpleNails Administrator in reply to SMH2]

Did you take a consistent levels? How much & for how long?

[SMH2 in reply to PurpleNails]

I was always requested.to.take 20mg but I took 10mg instead between 17/12/24-14/1/25 Then due to being so ill and in A&E I then increased to 15mg from 14/1/25 to 11/2/25 . They then asked me.to reduce so I'm on 7.5mg as from 12/2 to present

[PurpleNails Administrator in reply to SMH2]

An adjustment can take 6 weeks to see how levels settle, when it’s altered quicker it can complicate you & your drs understanding of results.

As you took a lower dose & levels dropped so quickly, drs will think the antithyroid worked as expected.

Try to keep to consistent dose & retest in 6 weeks.

[pennyannie in reply to SMH2]

Hey there SMH2 -

When the thyroid malfunctions several sets of antibodies can be found over the range and positive -

What other sets of antibodies have been tested - you have TPO and that is indicative of Hashimoto's -

and Hashimoto's is not medicated with Carbimazole - which is an Anti Thyroid drug

You need to have different antibodies tested and reading as a TRab or TSI - or a TSH Thyroid receptor readings - to be prescribed Carbimazole - do you have any other results ?

If your TSH is 2.09 and your T4 under the range and I do not think you should be on the Carbimazole -

please ask your doctor if antibodies for Graves Disease have been run and what were the results and ranges for the TSH Thyroid Receptor antibody / TRab :

[SMH2 in reply to pennyannie]

Thank you very much for your help I visited an endocrinologist yesterday and he's sitting on the fence with it. He said to reduce to 5mg carbisimole a day now and he's booked me a blood test for 4 weeks time for Tsh receptor antibodies and a full blood test as my folic acid is low. I am soooo confused. I pray to God I haven't now got hypo 🙏

[pennyannie in reply to SMH2]

Hey there -

the Anti Thyroid drug - Carbimazole is semi blocking you own, natural daily, thyroid hormone production -

So if on too much AT drug - and thyroid levels fall too far through the ranges -

you may experience symptoms of hypothyroidism which will be resolved by reducing the dose of the Carbimazole -

[SMH2 in reply to pennyannie]

Thank you - this makes sense. I'm just confused as to why he's asking me to take.any carbizimole at all, if suggestions are now showing I am possibly in hypo......

[pennyannie in reply to SMH2]

Well. exactly. and maybe just being cautious -

but also the fact that you haven't been on a consistent dose of the AT drug for 6 - 8 weeks and so these blood tests are not as clear cut as they may seem.

[SMH2 in reply to pennyannie]

Thank you

[SMH2]

Thank you so much! Youre right. I will keep a consistent dose for my retest on 28th March

[Calceolaria in reply to SMH2]

Is there a medical reason that you are so fearful of weight gain?