Carbimazole?: In bizarre and horrible twist to my... - Thyroid UK

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Carbimazole?

Calceolaria profile image
15 Replies

In bizarre and horrible twist to my recent hypothyroid diagnosis, my 40 year old daughter was diagnosed with hyperthyroidism last weekend after an emergency dash to a/e with pounding and rapid heart rate. After tests, she was sent home with propranolol. This helped a lot straight away but it was back to a/e the next day with an allergic reaction. Home again with carbimazole after Endo reviewed but didn’t come to see her. Meds tolerated ok so far but now heart rate speeding up. GP Pharmacy looking at any meds to help with that.

Any hyper people on here any advice please?

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Calceolaria profile image
Calceolaria
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SlowDragon profile image
SlowDragonAdministrator

Has she actually had TSI or Trab antibodies tested to confirm Graves’ disease

Link about Graves’ disease

thyroiduk.org/hyperthyroid-...

Graves Disease antibodies test - needs private blood draw.

Can’t be done via DIY finger prick test

medichecks.com/products/tsh...

Many Hashimoto’s patients initially start with transient hyperthyroid results and symptoms before becoming increasingly hypothyroid

Looking at your previous post you have Hashimoto’s

Your daughter needs full thyroid and vitamin testing

TSH, FT4 and FT3 tested

plus both TPO and TG thyroid antibodies tested for Hashimoto’s. Can also be slightly raised with Graves’ disease

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Vitamin levels frequently low with Hashimoto’s or Graves’ disease

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies 

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. 

Both are autoimmune and generally called Hashimoto’s.

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis 

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended on here that all thyroid blood tests early morning, ideally just before 9am

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

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Only do private testing early Monday or Tuesday morning. Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery 

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism 

thyroiduk.org/wp-content/up...

Calceolaria profile image
Calceolaria in reply toSlowDragon

Thanks Slow Dragon. She has just sent off the Advanced Test but was the finger-prick, damn. I sent her the link from here last week. So bizarre. Long story for her of six years fatigue and GP going down numerous pathways but thyroid only one TSH when symptoms first started. A nightmare six years! Only my diagnosis brought it back to the fore, so test was sent for even before the gallop to a/e.

She was tested on a/e assessment day ward (13 hours all told) and hyper was unequivocally given as diagnosis. All I know for sure is her T4 was then 27 and TSH was 0.001.

Such a worry. Thank you so much for help. I might just go mad yet!

I think that was after the propranolol reaction.

pennyannie profile image
pennyannie

Both Graves and Hashimoto's are thyroid auto immune diseases and can start off the same way, with high over range T3 and T4 levels and generally a low suppressed TSH reading.

In Graves Disease the T3 and T4 levels usually keep rising higher and higher and go way over range.

Graves is said to be life threatening if not treated and the treatment is an anti thyroid drug, like Carbimazole which blocks further own thyroid hormone production and slowly the T3 and T4 come back down into range, symptoms are relieved, and the AT drug titrated to keep the T3 and T4 in the range.

If the heart is involved a beta blocker such as Propranolol is also prescribed.

The NHS generally allocate around a 15-18 month window with this treatment option in the hope that the immune system calms down and the body resets itself.

In Hashimoto's the T3 and T4 levels do not rise so high, and are transient, and drop back down into range by themselves.

However with every immune system attack the thyroid becomes further damaged and thyroid hormone production becomes erratic and ultimately the patient needs the support of T4 - Levothyroxine as the gland is disabled and the patient becomes hypothyroid.

It is essential that the thyroid antibodies are run to distinguish between these 2 AI diseases and this maybe already be in the process of happening from the first blood sample taken.

We are looking for readings of TPO: TgAB: TSI; and or TR ab : do you have anything looking like this or wording such as thyroid receptor blocking - thyroid stimulating - thyroid peroxidase ?

Maybe your doctor can check to see if there has been a conformation from the hospital of the medical evidence and of which antibodies were found to be over range and positive.

Graves Disease - elaine-moore.com

Hashimoto's Disease - thyroidpharmacist.com

Calceolaria profile image
Calceolaria in reply topennyannie

Hi pennyannie. The hospital wouldn’t give her a printout of results ‘We can’t’. I’ve suggested she asks GP. Thanks for your help. She had a reaction to the propranolol so that’s out of the window!

pennyannie profile image
pennyannie in reply toCalceolaria

There are several alternatives to Propranolol just as there is one for Carbimazole -

All drugs have side effects - she must read the PIL - patient information leaflet and

if the Carbimazole isn't tolerated the alternative is Propylthiouracil ( PTU ) for short.

Calceolaria profile image
Calceolaria in reply topennyannie

Hi pennyannie. What are the alternatives to propranolol please? Do you mean the several others that also end in ‘ol’? They a are probably too similar.

pennyannie profile image
pennyannie in reply toCalceolaria

Many end in the wording ' lol ' but am not qualified to know the subtle differences in the make up of these tablets so suggest you speak to your doctor -

Partner20 profile image
Partner20 in reply toCalceolaria

It may be that the brand of propranolol contained a filler your daughter is intolerant or sensitive to, in which case another brand could be tried. If it is the actual drug itself, then there are alternatives. However, as pennyannie has said, we have no medically-based knowledge of these alternative medications, that will be for a GP/endo/cardiac consultant to decide. However, always check the PIL of any med or for both formulation and side-effects, although few people have many, if any of these side-effects, but the list is there to help if you do.

PurpleNails profile image
PurpleNailsAdministrator

FT4 is high by most ranges, but not very unusual to see Graves level closer to 40.  

TSH is suppressed but that can be caused by relatively mild elevations in FT4 & FT3.  Which I what I had from a hyper nodule.  

Full testing as detailed extremely important & the Graves associated antibodies. 

 How much carbimazole has she been given? 

 In severe cases doses reach 60mg spilt 2-3 times throughout day.  If thyroid levels don’t appear as severely high lower doses can be tried first.  But it’s still beneficial to split the dose.

I was given 20mg for 2 months then it was reduced to 10mg. Has she now stopped the propranolol, having had a reaction.   It does helps with symptoms but not route cause.  I was given high dose propranolol when initially diagnosed then told to stop after 2 month by specialist.  I was quite Ill from being instructed to stop it abruptly, the GP resumed it.  I managed to slowly reduce. I still take low dose as migraine prevention.  

GPs say they can’t order a Trab or TSI antibody tests & has to be by specialist.   Hope that this doesn’t take a long time to arrange

  Medichecks does offer a TRab test.

medichecks.com/products/tsh...

TRab measures blocking, neutral & stimulating antibodies affecting TSH receptors

The title refers to “stimulating” which is misleading TSI (Thyroid-Stimulating Immunoglobulin) test for stimulating only.(

Both are bio markers for Graves) 

This is more expensive test & also must be venous draw - (can’t be by finger prick unfortunately) so could work out expensive.  

Calceolaria profile image
Calceolaria in reply toPurpleNails

Thank you Purple Nails.

Calceolaria profile image
Calceolaria

Thanks Slow Dragon.

She is taking 5mg (mcg?) twice, both to be taken together in the morning.

As the Advanced Test doesn’t have any indicators for Graves on pinprick, would there be any clues of any use at all?

SlowDragon profile image
SlowDragonAdministrator in reply toCalceolaria

Symptoms obviously …though they can swing from hyper to hypo

Weight gain or weight loss?

Hot or cold?

Gut issues….bloating, constipation, diarrhoea, IBS

Mental health…..depression, anxiety, etc

Low Ferritin more likely Hashimoto’s

Very High TPO and/or TG antibodies are suggestive of Hashimoto’s rather than Graves’ disease

High cholesterol levels Suggests Hashimoto’s

See what advanced Medichecks test shows

And get print out of all previous tests done via GP over last few years

But usually find they tests thousands of things except the relevant ones

looking for

TSH, Ft4 and Ft3

TPO and TG antibodies

Vitamin D, folate, ferritin and B12

wait to see what Medichecks results show

But definitely request GP do TSI or Trab antibodies test and cholesterol levels

Probably coeliac test too assuming TPO or TG antibodies are high

Calceolaria profile image
Calceolaria in reply toSlowDragon

Thank you so much.

Marz profile image
Marz

Has she recently had the C19 booster ? Some people have experienced a change in thyroid function with unusual results ...

Calceolaria profile image
Calceolaria in reply toMarz

No Marz , not yet. Thank you.

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