Starting Carbimazole advice PLEASE!

[Rennixon]

My son went for a check up today and they took a blood sample. They then rang and said he needed carbimazole, straight away and then have another test in two weeks. They have started him on 4x5mg a day. I have no results as this has happened so fast. I would appreciate any advice at all about this. Some of the symptoms he has are fast heart, feeling hot, aches in his legs and dizziness

[helvella Administrator]

It is appropriate to split-dose carbimazole - especially at start of treatment. Trouble is, it has a short half-life and if 24 hours are left between doses, the thyroid can start making thyroid hormone again. Hence, taking it in two, three or even four doses.

Carbimazole works fast. It stops the thyroid creating more thyroid hormone. But if thyroid hormone levels are already high, it can take a long time for them to drop - several weeks.

Once that point is reached, thyroid hormone can drop fast and hypothyroidism is very likely.

However, some people need more than 20 milligrams (e.g. 40 or even 60 milligrams).

Make sure you, he and anyone else reads the Patient Information Leaflet - every word. People on carbimazole can suffer from agranulocytosis and that can be a very serious issue requiring urgent care.

[Rennixon in reply to helvella]

Thank you, I didn’t realise about the tablets, so I’ll make sure he takes them at as equal intervals as is possible. I will read all the information too. I’m very worried as we can’t get to see an endo yet because of corona and the doctor wasn’t very forthcoming either.

[helvella Administrator in reply to Rennixon]

If you have sufficient carbimazole and levothyroxine, you stand a good chance of things being OK.

Awareness is so very important. I just have the little list of pitfalls I try to mention but have never been hyperthryoid, so have no personal experience.

One other site often gets mentioned: elaine-moore.com/

[Rennixon in reply to helvella]

Oh I have enough levo to keep me going for months, so no problems there. I can’t get his results until his next visit, but I’m going to be monitoring it very closely as I know what they are like with my care. Like you say never having been hyper I just don’t know enough. Thanks for the link. - today is reading time - good job I can’t go anywhere 😂

[Hidden in reply to helvella]

I have just been diagnosed with hyperthyroidism and on 40 mg of carbimazole as well as a beta blocker as my heart rate was 166 most of the time

Can you tell me what agranulocytosis is ? Thankyou

[pennyannie in reply to Hidden]

Hello Archiebabe2

Welcome to the forum,

Please start your own post rather than ' highjack ' somebody else's - you will receive an answer in your own right.

[Hidden in reply to pennyannie]

How rude that a good start

[helvella Administrator in reply to Hidden]

It should help both you and the original poster of this thread to keep your cases separate. Otherwise, if nothing else, people reading the thread can very easily get confused.

It was NOT meant to be in the least rude.

[Hidden in reply to helvella]

Well it came across that way ! I’m new to the site and haven’t fully got the jist that was all !!

[helvella Administrator in reply to Hidden]

That is why I responded to you in a, hopefully, calm way to try to explain.

We often find that if someone posts a response onto an existing thread, others answer either or both people almost randomly and that is why it is so confusing.

This is especially the case as the number of posts here is huge and just reading through quickly is as much as many members can manage. (Not surprising, they don't spend all day, every day, here. )

[pennyannie in reply to Hidden]

Hey there Archiebabe,

I wasn't meaning to be rude, and I apologise if you have taken my comment this way :

I have just looked but there doesn't appear to be any information on your health issues on this website so I'm sorry but do not feel able to offer you any advice at this point in time.

[Rennixon in reply to Hidden]

Hi there, I feel I must stress that people on this forum are extremely helpful and asking you to start a new thread is something of a rule here and in no way was a request to do so made with any malice. The reason for this is that every response to my(the original) question, gives me a notification- hence I now have 10 that have nothing to do with my original question. It also as mentioned confuses the issue and stops responses that I may find useful. I’m sorry if you didn’t understand the why and wherefore of this and would urge you to please post your own question and help will be provided. Good luck x

[knackersyard]

When my wife suddenly became ill (rapid weight loss, shaking, thought she was going to die), I urgently searched the Internet & found the TPA forum, where some amazing helpful ladies gave us a list of blood tests to request. To our amazement, the GP actually questioned what some of them were & refused to do them. After some protest, they were done.

We had an urgent call the following day with an immediate appointment with an Endocrinologist.

The Endo prescribed (from memory) 40mg Carbibazole & said I'll see you in 6 months...

No exaggeration, after one day she said she felt fantastic.

After 3 days she couldn’t be bothered to get off the couch..

Thankfully, the ladies were on hand with advice.

They explained what a powerful drug it is & how dosage is critical.

Their advice was that she knows what HyPER feels like & what HyPO feels like.

Half the dose & judge it for yourself based on how you feel...

That worked a treat.

She ended up down to 5mg & after about a year, stopped taking it altogether.

Maybe she’s a one off?

Good luck to your son.

[Rennixon in reply to knackersyard]

Thank you, it’s good to know he may recover from this. He has lost weight too, but as he’s at university and has to walk everywhere we put it down to that. Reading the causes I can absolutely pinpoint the day it happened back in September last year, so hopefully we have caught it early enough. He is relieved that he has an answer, but we know hardly anything about the condition ( I’m hypothyroid, so never looked that closely at hyper)

I will get in touch with the TPA forum and get their advice.

Again thank you for telling me about a positive. 😊

[Lora7again]

Try not to overdose on this drug because it is very powerful and you need regular blood tests. Here is a link about the drug.

bnf.nice.org.uk/drug/carbim...

Just to add I had undiagnosed hyperthyroid for over 2 years and I am now on my second remission so your son will get better. Don't be pushed into RAI or having his thyroid removed because a lot of people find it a struggle to get proper treatment from their Doctor afterwards. Also a lot of people can take carbimazole for years to keep their levels under control and I know someone who has been on it over 10 years but you do need regular blood tests. You can read my story on my profile page if you are interested.

Get your son to join Elaine Moore's site in the USA she helped me get a diagnosis when my GP told me I was suffering from the menopause and was absolutely useless.

Here is a link

elaine-moore.com/

[Rennixon in reply to Lora7again]

Thank you very much, I will take a read. It all happened so fast yesterday, they even told him to make an appointment with the endo, but of course all appointments have been cancelled because of corona virus. He will need blood tests, and to monitor it properly I need those results, which we won’t get now until his next visit to the surgery.

[pennyannie]

Hello Rennixon

Carbimazole is an anti thyroid drug which blocks the production of your thyroid hormones.

There is an alternative AT drug, Propylthiouracil, commonly referred to as PTU, should your son develop any symptoms, and I was told if I developed a sore throat to go straight to hospital.

AT drugs are generally only prescribed when a blood test has been run and a diagnosis of Graves Disease has been made by there being a positive for the TSI/TRab antibodies. I trust this has happened and there is a positive diagnosis and this is not just a knee jerk reaction to a simply blood test with no further detailed analysis.

Graves Disease is an autoimmune disease that attacks the thyroid - the thyroid is not the cause but the victim of an attack by the immune system. There is generally a generic predisposition, maybe a generation away, and it can be triggered by a sudden shock to the system, like a car accident or sudden death.

You son's symptoms should soon reduce and hopefully he will feel more comfortable until, I presume, he sees an endocrinologist who will monitor and possible dose titrate so your son doesn't fall into the other extreme, hypothyroidism. Generally speaking the hospital allocate about a 15 month window for treatment with a view to riding out this first phase and the thyroid falling back into normal rhyme with as little or no medication as the end game.

Graves does tend to be a poorly understood and badly treated autoimmune condition and in my experience the hospital was not very forthcoming about the auto immune component of the disease.

You might like to take a look at the Elaine Moore Graves Disease Foundation website - there are sections on alternative and holistic options that may calm down the body and reduce the antibody reaction, diet and life style considerations, and so much more.

This lady has the disease and found no help herself after she was given RAI thyroid ablation treatment in the late 1990's. and so being a medical researcher she wrote a book to help others who might be in a similar position, and I was one who found her book and along with this amazing website managed to turn myself around to better health.

[Rennixon in reply to pennyannie]

I only know he had a thyroid panel taken . No other test until two weeks & my understanding is it will be thyroid levels again. I don’t think there will be any in-depth stuff as from my own experience it’s just not done. They also gave him a referral to an endo, but because of corona he can’t get an appointment. So the GP is passing the buck and won’t do the tests he needs. If it comes to it I’ll have to pay and try to monitor it, but first I need to learn. I will indeed look at the site and may have more questions later today. Thank you .

[pennyannie in reply to Rennixon]

No problems, ask away, there are many amazing people on here.

I actually learnt of my situation back to front - it is important that the antibody test is done to substantiate that it is Graves Disease - they have the blood test, it's simply a further analysis.

I understand these are strange times but illness isn't confined to just one virus.

Your doctor can ask for the antibody test result, this is normal procedure.

The further blood test will be to see in the AT drug is reducing the T3 and T4 blood test levels and possibly adjust the dose of the AT drug in accordance.

Within a week, I was back at work and believed I was ' sorted ' - as you do !

As your son has been loosing weight, this shows his metabolism is running too fast -

it is very important that his core strength is maintained and ferritin, folate, B12 and vitamin D need to be maintained at optimal levels throughout this phase.

Graves is said to be stress and anxiety driven, so it's important not to get stressed out, though I know, just tapping this out, it can be like showing a red flag to a bull !

His body is exhausted, and he too will feel exhausted, mentally, physically, emotionally, psychologically and spiritually - his thyroid has gone haywire, and he may have problems ' turning off ' and feeling as though he has run a marathon in 4 minutes flat, and needs to do it all again, as his brain is still wired and out of tune with his exhausted body.

The thyroid is a major gland responsible for full body synchronisation and wellbeing.

[Rennixon in reply to pennyannie]

Thank you. As I have hashi’s I was wondering about supporting his metabolism and luckily have supplements to hand whilst I sort out a supply for him. It was kind of awkward yesterday as the surgery quite understandably didn’t want anyone other than the patient in there. The other factor was that he’s an adult & I didn’t want to go in all guns blazing as it were. But now I know what it is, I will insist on going in and knowing what tests they are doing and getting results I can see.

It’s knowing what tests he needs, to begin with and then I can go from there.

So I need a thyroid panel including T3 & and an antibody test , which is perhaps what they will do next time ..

Are there any private tests I can get?

[pennyannie in reply to Rennixon]

Basically, your son is entitled to copies of all his blood tests and this is the first step.

It probably shows a low TSH and high T3 and T4 readings - and at this point in time it could be Hashimoto's - it is the antibodies that need to be tested so as to determine the correct medication.

If with Hashimoto's Disease , like yourself, he should not be on Carbimazole.

If with Graves Disease he needs to be on an AT drug -

This is the first question that needs to be answered to determine the correct treatment :

There are private blood test companies on the Thyroid uk website - and believe at least one of them, Medichecks offers the Graves antibody test, maybe they both do, and maybe you just need to ask the question.

[Rennixon]

Thank you -I’ll look

[pennyannie in reply to Rennixon]

Just thinking, looking at your earlier reply, I understand that you are probably well experienced with all that you have been through with your treatment of Hashimoto's Disease.

Graves Disease can be ' life threatening ' if not treated, so I do believe that your son will get the right treatment, it's just knowing exactly what he has been diagnosed with that is the key to the treatment, and if it is Graves he needs to have been tested for either a TSI ( Thyroid stimulating ) and or a TRab ( Thyroid blocking ) antibody, and in my understanding believe this will have been identified from the initial first blood test.

[Valarian]

20mg/day is a moderate dose. Although the doctor may have said to split it, my endo always emphasised that it's more important to take the full dose, so if your son tends to forget evening doses (for example) better to take it all together than to keeping leaving it. If he gets a sore throat or mouth ulcers, he would normally be told to stop taking the carbimazole and see his GP or A&E for a blood test, as there is a rare but serious side-effect of carbimazole which severely reduces the white cell count. Under current circs, no-one is going to than kim for turning up at A&E or his GP with a sore throat, so the best advice would probably be to ring either his GP's surgery or 111.

His symptoms sound classic for being hyperthyroid, although Graves' isn't the only reason for this (but as you probably know,, autoimmune thyroid diseases tend to run in families, and as you have Hashi's...).

Most people put the weight back on again as their thyroid levels stabilise, but in the meantime, he may be very hungry or thirsty, even by teenage lad standards !

The antibody tests for Graves' are either TRAb or TSI, but he may not be able to get them on the NHS without seeing an endo. Absence of them doesn't 100% guarantee he doesn't have Graves'.

Here are some links that may help:

Hyperthyroidism

thyroiduk.org.uk/tuk/about_...

btf-thyroid.org/hyperthyroi...

Antibodies and Thyroid Function Tests

thyroiduk.org.uk/tuk/about_...

btf-thyroid.org/thyroid-fun...

Antithyroid Drug Therapy (eg Carbimazole)

btf-thyroid.org/antithyroid...

Good luck !

[Rennixon in reply to Valarian]

Thank you. I’ve got his results today and they took TSH & T4

TSH was below 0.01 (0.3-4.2)

T4 above 100 (12-22)

White blood cell count was okay thank goodness. He’s okay in himself and I’m grateful he’s at home as he’s training to be an ODP, so is normally on placement in hospital.

I’m going to email the go and ask if they will request the antibodies test as in the current climate we will not get to see an endo.

He does have another test booked for next week, so hopefully they will do it.

😊x

[Valarian in reply to Rennixon]

Non-existent TSH is typical of Graves', it may take ages to recover. The priority for now will be to get FT3 and FT4 within range.

Your son's GP may not be able to order the antibody tests, they are quite often specialist order only.

The same may apply to FT3, otherwise labs often test FT3 automatically if FT4 is elevated that much above the reference range - perhaps they'll include it in the next set of tests.

[Rennixon in reply to Valarian]

I know if they ask for it (t3) then the lab will do it. But the gp may not ask - I’ll include it in my email 😊