Carbizamole

[DuranDuran20]

My mom has been taking carbizamole for about 7 months for an overactive thyroid. In the last 4 months shes developed dementia type symptoms. Her GP has tested for dementia and she passed easily. Has anyone any experience of these type of symptoms whilst taking carbizamole? ty.

[PurpleNails Administrator]

Can you give an example of a concern.

Often dementia type symptoms include:

* Memory loss, which is usually noticed by someone else.

* Difficulty communicating or finding words.

* Difficulty with visual and spatial abilities, such as getting lost while driving.

* Difficulty reasoning or problem-solving.

* Difficulty handling complex tasks.

* Difficulty with planning and organizing.

Being hyper or taking too much carbimazole and having low thyroid can cause very similar symptoms. Her Carbimazole might not be at the right level.

I still need alarms/timers for when I’m cooking & for taking tablets. I often forget the end of sentences & I consistently call things the wrong name like duvet instead of blazer. Not when I say hang up your blazer my teenager knows what I mean. I don’t think its the carbimazole I’m on (I think mostly it just me) but it’s very much worse when my levels are off.

What is her current dose of carbimazole ? Is she regularly retested to check levels & adjust dose?

Has the cause of her hyper been established?

Most doctors assume all hyper or (going by TSH) is Graves a treat all hyper in same way.

Sometimes autoimmune thyroiditis (Hashimoto’s) starts with transient high level but levels drop.

What are your mums recent results for full picture you need:

TSH - (thyroid stimulating hormone) this is a pituitary hormone which signals thyroid to produce. Doctors focus on it an assume when this is “normal” so will thyroid hormones - however not always reliable.

FT4 - free thyroxine hormone

FT3 - free triiodothyronine - more powerful hormone

Antibodies -

TPO

TG

If Graves suspected this MUST be confirm with either

TSI

TRab

Also Important to test

Folate

Ferritin

B12

Vitamin D?

Post any results with ranges (ranges vary between labs so always required)

[DuranDuran20 in reply to PurpleNails]

Thanks so much for your reply, really need to check out the things youve mentioned. Best wishes 🙏🏻

[SlowDragon Administrator]

Always test thyroid levels early morning to get highest TSH

Essential to test Ft4 and Ft3

Low vitamin levels are extremely common with autoimmune thyroid disease, Graves’ disease (hyperthyroid) or with Hashimoto’s (hypothyroid)

If she’s on too high a dose of Carbimazole she will become hypothyroid

Low vitamin levels are much more common as we get older too

Test vitamin D, folate, ferritin and B12

[ling]

How old is your mom?What's the cause of her hyperthyroidism?

Any other health conditions?

Specifically, what type of dementia symptoms?

Memory issues can occur with thyroid disease.

[Cavapoochonowner]

hello there, I have graves disease and until recently I was on carbimazole.Quite a high dose 40mg per day as block and replace.I had a total thyroidectomy almost 4 weeks ago.I can very easily identify with your concerns.I too felt I had "dementia type " symptoms.Repeating myself, couldn't find words(it's like a black hole in my brain),couldn't seem to think straight, sometimes stammering and finding it difficult to form words with my lips, having to write everything down etc.I do feel clearer headed since I stopped my carbimazole.Alot if my graves symptoms have eased.Trying to think straight when your brain is going 100mph all the time and giving you a million things to think about is exhausting.I think my symptoms were a side effect of graves disease itself but also of course certain medication can also give dementia type symptoms.I also take amitriptyline everyday and also proprananol, both as a migraine preventative and unfortunately listed in the side effects for both are memory problems, and I think cognitive problems.Obviously not everyone gets these side effects.I think you were wise to have your mum checked out but at least now your worries have been put to rest.Best wishes to you both.

[DuranDuran20 in reply to Cavapoochonowner]

Thanks so much for your reply. I will certainly get things checked. Glad youre feeling better than you were, youve been through a lot. Best wishes to you too, take care 🙏🏻

[pennyannie]

Hello Duranduran and welcome to the forum :

The AT drug, Carbimazole will be blocking her thyroid hormone production and it sounds like her dose need titrating :

Can you please advise on the medical evidence of which antibodies were over range and positive and why she was put on an AT drug, and her T3 and T4 levels at diagnosis, before any treatment was started.

[DuranDuran20 in reply to pennyannie]

Thanks for replying. I need to get this checked for sure. She was given carbiz when she was in hospital recovering from a hip fracture op. I wasnt even informed she had been given the med! She recently gave a blood sample so will need the results. Best wishes 🙏🏻

[pennyannie in reply to DuranDuran20]

Did you see that I've linked you into another post - hope I did that ok ??

[pennyannie in reply to pennyannie]

We are now legally entitled to copies of all our medical records, your Mum's included !!

[DuranDuran20 in reply to pennyannie]

Thanks so much, really need to sort this out ❤️

[Alexkjones]

Hi.

What’s her current tsh level? If you over shoot with the carbo you can go a bit under active and get brain fog. I aim for a tsh of about 1.2. I’ve been on carbo for over 8 years now.

[mistydog]

Having a UTI can cause dementia like symptoms, so worth checking as very common in the elderly and especially in the warm weather we have had.

[hopcott]

I have been on Carbimazole for 22 years I did have half my thyroid removed 9 years ago as there was a lump in my neck fortunately it was just a nodule my thyroid was normal for 2 years and didn't take any tablets but then it went over active again so went back on the Carbimazole again I have started to forget things in recent years but think that comes with age 77 now

[Louisehamblin in reply to hopcott]

I have been taken off Carbimazole for the third time and have been told if I stay on it it will kill me by my endo. When I questioned the point I asked if it was to get me to have my thyroid removed and was it because treating me for hyperthyroidism was costly. Her answer was yes the NHS won’t pay. So my question is how have you managed to stay in it for 20 years?

[helvella Administrator in reply to Louisehamblin]

Probably a good idea to know how much Carbimazole costs the NHS.

Look only at the 5 and 20 milligram tablets. (If even available - which they weren't at one point - the 10 and 15 milligram tablets have always had grossly out-of-line inflated prices.)

£2.59 and £3.74 respectively (though with some odd NHS indicative prices!)

bnf.nice.org.uk/drugs/carbi...

[Louisehamblin in reply to helvella]

It’s also the cost of being monitored by the endo every three months. Was on 5mg every other day. Really high risk

[helvella Administrator in reply to Louisehamblin]

While I agree you need regular testing, if the results are more or less the same, and you feel much the same, why do you need to actually have an endo appointment every three months?

[PurpleNails Administrator in reply to Louisehamblin]

I think it’s more the involvement of specialist & that you are a hospital waitlist. My endo told me I’d only be “kept on the books” if I agree to undergo radioactive iodine RAI soon.

As I wanted to wait the specialist discharged me for GP to monitor. I refused at first, then I figured at least I get access to results & stop being hassled to undergo treatment.

Unfortunately GP is clueless on another level. The specialist always attempted to increase dose, lowering levels too much - GP does the oppose & ignores instructions to keep FT4 approx mid range. Says if in normal range it’s acceptable. I still get asked when I’m going to be treated…..

[Louisehamblin in reply to PurpleNails]

How long have you been on medication? I’m on my third round. The endo is pressuring me to have thyroid removed. Apparently Carbimazole will kill me. Don’t trust them and have walked out twice as they don’t listen.

[PurpleNails Administrator in reply to Louisehamblin]

Approaching 5 years. Started on 20mg but currently take 10mg week days / 5mg weekends. I’ve taken continuously as my hyper is from a nodule & not expected to go in remission which is hope when caused by autoimmune.

I’ve not been told carbimazole will kill me.

Carbimazole has the <1% risk of triggering lowering of white cell which of left unaddressed could cause death.

How often do your doctors test your blood count, given the doctor say this will result in your death I imagine they monitor very closely?

[Louisehamblin in reply to PurpleNails]

They just want me to have my thyroid out. I was only in 5mg every other day. Feel shocking now I’m off it. My blood is tested every 3 months. Now I’m off Carbimazole they will test 6 monthly. I have just had another blood test this week after 4 months.

[pennyannie in reply to Louisehamblin]

Hey there - you might like to copy the following research paper:-

pubmed.ncbi.nlm.nih.gov/338...

I was told at my very first hospital appointment that I was to have RAI thyroid ablation for Graves Disease the following year - 2005 :

I knew nothing then - and in all seriousness I do not understand why this toxic substance is still a first line treatment in what we believe to be a health care setting :

ncbi.nlm.nih.gov/pubmed/306...

All things Graves Disease and AI - elaine-moore.com