update on taking carbimazole and ndt at same time - Thyroid UK

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update on taking carbimazole and ndt at same time

ja4ne profile image
16 Replies

I have received my blood results for blood taken August 21st 2024, they are

TSH 0.99mU/L (0.30-4.50), T4 11.6pmol/L (11.00-22.00), T3 pmol/L 4.3 (3.1-6.8)

Blood tests from June were TSH <0.02mU/L (0.30-4.50), T4 13.4 pmol/L (11-22), T5.3pmol/L (3.1-6.8), I had just been taking a half of 5mg carbimazole tablet from the end of June until August blood tests, the endo says my thyroid function has improved so to take one tablet. I am thinking of stopping the tablet as I am feeling so ill but am wondering if I do the levels will go back up. Any thoughts welcome.

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16 Replies
PurpleNails profile image
PurpleNailsAdministrator

So you take 2.5mg carbimazole daily & how much NDT?

How do you currently feel with symptoms.

Was test taken as recommended? Early morning, fasting, no biotin 3/7, delayed replacement until after draw?

ja4ne profile image
ja4ne in reply to PurpleNails

I am not taking any ndt PurpleNails, I feel very cold, nauseaus, very depressed. Test was taken early morning and no biotin. I was diagnosed as hyperthyroid when levels were TSH <0.02 (0.30-4.50), T3 11.5 (3.1-6.8), T4 26.4 (11-22) last September, the levels were coming down on their own until May which were T3 8.6, T4 22.00 , I started taking one 5mg carbimazole tablet after the May blood tests.

PurpleNails profile image
PurpleNailsAdministrator in reply to ja4ne

OK, your title confused me - carbimazole and ndt at same time.

Could you put a time line in your profile. You were hypothyroid for many years but then developed hyper results?

Have TRab or TSI been tested? Has thyroid been scanned for nodules, or uptake scan to show function?

You FT4 & FT3 do look low. Did endo want to increase dose. Often they do as focus in TSH.

Some find carbimazole can a stabilising effect so stopping can mean levels spike again.

I think block & replace might be better option as you have history of hypo & now hyper.

ja4ne profile image
ja4ne in reply to PurpleNails

Sorry for confusion PurpleNails, that was my last post, I was hypo until last year, TRab was <1.0 (1.0-1.8) last September, I had a thyroid uptake scan in April which showed a total uptake of 1.2% and uptake is homogeneous in both lobes. I had a scan a few years back which showed a nodule. With just being on half a tablet from Junes blood tests which were T4 14.00 and T3 5.3 until Augusts which are T4 11.6 and T3 4.3 I thought the levels are coming down too fast. My doctor is saying about taking antidepressant tablets for the depression but I don't want to take them if it is from my thyroid problem.

greygoose profile image
greygoose

Were your TPO and Tg antibodies tested? Sounds to me like you have Hashi's. And, despite the TSH level - which is euthyroid - your Frees are very low and you are hypo, which is why you have such debilitating symptoms.

ja4ne profile image
ja4ne in reply to greygoose

Thank you for reply greygoose, no my TPO and Tg antibodies were not tested , I think the endo went off what the TRab was, I am not going to have the RAI treatment they are wanting to give me.

greygoose profile image
greygoose in reply to ja4ne

If I were you, I'd insist these were done. Or get them done privately. Your endo should have done them as a matter of course! He obviously doesn't know that much about thyroid.

SlowDragon profile image
SlowDragonAdministrator

Totally agree with greygoose

These results look like a Hashimoto’s swing

Did you have COVID before this hyper phase?

Recommend you get FULL thyroid and vitamin testing including both TPO and TG antibodies

Your low mood directly linked to low thyroid levels

What vitamin supplements are you taking

When were vitamin levels last tested

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)

T3 ….day before test split T3 as 2 or 3 smaller doses spread through the day, with last dose approximately 8-12 hours before test

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

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH 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

With just being on half a tablet from Junes blood tests which were T4 14.00 and T3 5.3 until Augusts which are T4 11.6 and T3 4.3 I thought the levels are coming down too fast.

June results

Free T4 (fT4) 13.4 pmol/L (11 - 22) 21.8%

Free T3 (fT3) 5.3 pmol/L (3.1 - 6.8) 59.5%

August results

Free T4 (fT4) 11.6 pmol/L (11 - 22) 5.5%

Free T3 (fT3) 4.3 pmol/L (3.1 - 6.8) 32.4%

Clearly these August are far, far too low

I would agree …..see how levels respond if you stop Carbimazole

likely very low vitamin levels with such low thyroid levels….unless you are taking supplements

Are you on gluten free or dairy free diet?

ja4ne profile image
ja4ne in reply to SlowDragon

Yes I did have covid and vaccines before I became hyper SlowDragon, I take vitamins D with K2, Vit C, spatone sachets, magnesium and B12. Last test for Vit D was 91 (25-150), B12 969 (197-771), Folate <20.0ug/L (Above 2-5), ferritin 91ug/L (23-400), thank you for all the information. Not on any diet but don't have much gluten or dairy food.

SlowDragon profile image
SlowDragonAdministrator in reply to ja4ne

Gluten free needs to be strictly gluten free to be effective

ja4ne profile image
ja4ne in reply to SlowDragon

Thank you SlowDragon for advice, will go gluten free

pennyannie profile image
pennyannie

Hey there again :

Your TRab were negative when tested so Carbimazole was probably not the most appropriate treatment option, though did the job of lowering your T3 and T4 thyroid hormones quickly but unfortunately this hasn't alleviated your symptoms.

Did you ask your sister if she knew of the reason for her hypothyroidism ?

Was she diagnosed with Hashimoto's - which is probably what you too are dealing with.

Hashimoto's is not treated with an Anti Thyroid drug - such as Carbimazole -

since the T3 and T4 fall back down into range slowly, by themselves, with the patient longer term, becoming hypothyroid as this Auto Immune disease damages and disables the thyroid.

Both you and your sister have been hypothyroid for several years with her recommending you try NDT, when you found you couldn't tolerate the T4 the NHS prescribed for you.

Covid and or the vaccines have likely upset your immune system, and have caused this phase of ' being / looking like hyper ' which is likely over as you appear to be back in range, and now probably too low in the ranges for you to feel well.

Natural Desiccated Thyroid is but one treatment for hypothyroidism option but unlikely to be prescribed on the NHS.

ja4ne profile image
ja4ne in reply to pennyannie

Thank you pennyannie for information, no my sister did not know the reason for her hypo, I am going to stop taking the 1/2 tablet of carbimazole and see if that helps.

pennyannie profile image
pennyannie in reply to ja4ne

OK - then I think you owe it to yourselves to organise a blood test to get your thyroid antibodies run - and know of the reason for your hypothyroidism -

The most common are those of TPOAB - Thyroid Peroxidase Antibodies - and the cause is the Auto Immune thyroid disease Hashimoto's - which overtime disables the thyroid leaving you needing thyroid hormone replacement.

All things Hashimoto's - thyroidpharmacist.com

ja4ne profile image
ja4ne in reply to pennyannie

Thank you for the information and advice pennyannie, will look in to getting antibodies checked, hypothyroidism runs in our family going back a few generations.

pennyannie profile image
pennyannie in reply to ja4ne

Ok then, and yes, likely genetic and Auto Immune so knowing cause helps manage the symptoms.

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