Help carbimizole

[michellerace1986]

I've was diagnosed with hyperthyroidism after my daughter I took carbimazole 10mg 3 times a day it got better I stopped it then I had my son and was diagnosed again now they give me 20mg and I'm meant to take it twice a day but I feel really ill just sick and poorly is this normal??b

[PurpleNails Administrator]

Welcome to forum, sorry to hear you need carbimazole again.

What blood tests have you had? Do you know the cause of your hyper?

How long have you been taking 2 x 20mg carbimazole?

If you have just resumed Carbimazole it might be causing the nausea, (if that’s what you meant when you said feeling sick?) or did you mean unwell in another way? It should settle once adjusted to medication.

Do you have a follow up blood test scheduled? 40mg is a normal initial “higher” dose I should imaging this will be reduced down as you become stable.

[michellerace1986 in reply to PurpleNails]

I think it may have been brought on my pregnancy, I only started 20mg tabs Monday I'm only taking 20 not the 40 they told me to, I've had the runs and I feel spaced out and sick my doc said results were high 65 but I don't know what that is? I saw a specialist yes ago and my thyroid was enlarged I feel so hot and shaky all the time and my hands and legs shake I'm really scared!

[michellerace1986 in reply to michellerace1986]

I'm having another test Monday, I was initially prescribed 20mg a day but the doc referred me to specialist they reviewed my results and sent me letter saying I need to take 40mg a say so I got 20mg tablets and I'm meant to take 2 a day, I was bad and I stopped taking my meds for a week then started again Monday but the 20mg tabs are 4 times what I was taking in one go!

[PurpleNails Administrator in reply to michellerace1986]

20mg x 4 would be 80mg, did you take this in one go? Was that by mistake.? Or did you start taking this dose?

[michellerace1986 in reply to PurpleNails]

I was taking 4 x 5mg but 4 times a day then bow I'm meant to take 20 mg twice a day

[PurpleNails Administrator in reply to michellerace1986]

Feeling hot, shaking & feeling anxious are all hyperthyroid symptoms. I suspect the 65 might be your FT4 level, in which case it is extremely high (3 times the norm, by most ranges we see). In which case a 40mg dose is appropriate.

You can obtain printouts of your results via reception (don’t ask doctor) or arrange online access for GP records which is really helpful to see your progress. You also need to know what been tested as often a full thyroid function test is not completed. For example have antibodies have been tested?

Don’t accept verbal or hand scribbled notes you need a printed copy with ranges (ranges vary between labs so essential). They shouldn’t ask why but if they do try to resist just say they are for your records. You are legally entitled to them.

Carbimazole might be causing the upset stomach, so can being hyperthyroid.

Do you have a “Fitbit” or way to monitor heart rate. If your heart rate becomes very fast you develop any fever or feel agitated don’t wait for a doctors appointment report straight away.

[michellerace1986 in reply to PurpleNails]

Thank u so much for replying to me! I'm a mess at the min, I dont monitor my heart nut I feel it beating fast when I'm trying to sleep! The shaking is awful I get so panicked me being silly and stopping my meds for a week prob not helped should I take the 40 mg even tho they might be making me feel so bad?

[PurpleNails Administrator in reply to michellerace1986]

Likely the thyroid levels are the cause, or only partly the Carbimazole. The medication inhibits production of new hormone, it doesn’t remove what’s already in your system. So the medication must be taken as consistently as possible. With regular monitoring and adjustments to keep you in the normal range.

As weight loss is common when hyper regaining it once on carbimazole is normal. To gain too much weight would take a very long time of taking too much carbimazole. We are advised to be careful as we have become accustomed to larger apatite, but at this time you won’t have have much control over metabolism and appetite so focus on adding nutritious foods. Not everyone is the same. I gained weight when hyper & lost weight when low in range.

The priority is your health.

[michellerace1986 in reply to PurpleNails]

Thank u so much again it feels good to have some advice as docs apps etc are reduced due to covid, I have been eating like mad and loosing loads 5 lbs in one week before I was diagnosed I was 17 stone after my boy so weight loss has been the only plus I still have 3 stone to go so weight gain is a concern but I don't want to die either a heart attack is a real concern with the thyroid issue xx

[PurpleNails Administrator in reply to michellerace1986]

I was also given propranolol with carbimazole, often prescribed together. Propranolol often temporary, helps with symptoms especially palpitations. Was this considered for you? Asthmatics can’t take this medication.

Carbimazole can be taken in one daily dose safely but it works better initially to split the dose. So taking the 4x5mg in one go is nothing to worry about.

Your doctors may suggest an increase of your medication if your levels are higher than expected, so It might be best if you make them aware you didn’t take as much as advised to. Say you got into a muddle if you think they might “lecture” you. Stress you are now taking the correct amount.

[michellerace1986 in reply to PurpleNails]

I was offered Beta blockers but I was scared they would lower mh heart rate and it would stop and I'd die! I'm a worrier I've been scared of dying since I was 5 🤨

[michellerace1986 in reply to PurpleNails]

Do u still take any meds? Did u have hyperthyroidism

[PurpleNails Administrator in reply to michellerace1986]

I’m a worrier too & my teacher, who had an accent, used to call me “the worrier”& my class mates thought she was calling me the “warrior” that was my nickname!

I have hyper levels from a large nodule, (which I still have). My thyroid levels elevated very gradually over many years.

I take carbimazole and low dose propranolol (as migraines prevention). Most find propranolol helpful with symptoms and provided you reduce slowly when stopping they have no issues. A healthy individual would have to take very high doses unnecessarily for it to lower heart rate to dangerous levels.

It has mild antithyroid element. So helpful when hyper (not so much when hypothyroid).

[michellerace1986 in reply to PurpleNails]

It's so nice to talk to someone who understands my bf and his mum are very unsympathetic they just say oh what's wrong with her now and my bf just tells me to get over it! I don't have any family or friends either

[PurpleNails Administrator in reply to michellerace1986]

I'm sorry your partner and his mum are so unsympathetic. Would they do any research to find out about your diagnosis themselves?

We do have partners post on here asking how they can help, this is what I might say to them:

A diagnosis of hyperthyroidism can be a potential serious condition. The symptoms are real, physical and can be varied and severe. It can cause anxiety & fatigue.

You can read about the symptoms, causes, complications and treatments on the thyroid UK site and NHS website.

Things you can do to help:

Help your partner organise appointments & manage medication & timing which can be confusing. They can be overwhelmed & forgetful.

Gift them a diary and help them record new & changing symptoms, appointments and items which need to be discussed & followed up with doctor. Also note what medications and supplements they are taking.

Remind them to get into the habit of obtaining test results to keeping track of their levels.

Allow them time to relax and get extra rest. It will take time to recover.

I don’t know if they would post on here, maybe you could show them your post. I hope they will understand you are ill and it’s not so you can overcome yourself.

[michellerace1986]

I'm so scared I have 4 kids I don't want to die I don't know what is making me feel like this is it the carbimazole or is it the thyroid

[tattybogle in reply to michellerace1986]

the scary symptoms are because of the high levels of thyroid hormone your thyroid is producing called T4 and T3 ............(this is the 'High 65' your doctor mentioned )

The carbimazole works by stopping you thyroids producing as much T4 and T3, so taking it will help .

It's not the carbimazole causing how you feel.... it's the T4 and T3 you are producing yourself and it needs lowereing to allow you to feel better.

carbimazole doesn't get rid of T4/3 already in your blood stream though, it just gets in the way of the production of more.

The higher the dose of Carbimazole the more it slows down your production of T4/3.

If they prescribed a higher dose , it's because they want T4/T3 levels to come down faster.

By stopping Carbimazole for a week you will have allowed T4 and T3 levels to build up higher again, which explains how bad you feel .

It's important to take it to get them to gradually come down again.

Don't worry about being prescribed 40mcg .. that is quite normal initially and then it is usually reduced later on as levels of T4/3 come down.

Sending a hug

xxx

helvella SlowDragon

[michellerace1986 in reply to tattybogle]

Thanks, I still even have only been taking 20 my I think I'm scared of taking 40 in case it goes low and I put on weight which is totally silly I know, im going to take the 40 as of today I'm having blood test again Monday this messes with my head I'm always angry or crying or both!

[tattybogle in reply to michellerace1986]

Feeling angry /crying /both ... don't feel 'silly' about feeling panicky about everything right now..... it's not 'you'.. its the 'too high' levels of T4/3 making you brain and (everything else) go too fast for you to cope with.

Hormone (T4/3) levels going too low and causing weight gain is a thing that would take weeks of being on more carbimazole than needed , but they will monitor your T4/3 levels and adjust carbimazole dose accordingly.

Right now it's most important to get the T4/3 levels to come down .

If you heart rate becomes very fast you develop any fever or feel agitated don’t wait for a doctors appointment report straight away.

[tattybogle in reply to tattybogle]

p.s When discussing your blood test results from monday.. make sure you tell them that you didn't take it for a week .(tell the person doing the blood test so she can write it on the form.. and tell the Doctor when they discuss the results and carbi dose with you)Otherwise if they think the T4/3 levels are still very high after taking 40mcg for a week or so, they might interpret the results as meaning they need to increase dose further , whereas if you had taken 40 for the week the fT4/3 results would look lower.

Between now and monday is probably not enough time for your T4/3 levels to properly reflect the effect of a 40mcg dose.

Please don't feel daft about being nervous of taking it .. it's not your fault .. it's their job to explain how it works, what to expect, and reassure you you're safe.

if you felt nervous of taking the carbimazole ,they obviously didn't do a good enough job of reassuring you.

[michellerace1986 in reply to tattybogle]

Thank u, no they didn't I got letter saying I have to double my dose but the doc never explained to me why I tried to call a few times but I I missing the call back x

[tattybogle in reply to michellerace1986]

Try and put your mind and body at rest as much as you can and do calming things* for the next couple od days while the carbi works to reduce the levels of T4/3 produced.

* i imagine that's virtually impossible with 4 kids and high levels of thyroid hormones running around ... but do your best.

There's nothing you can do about the levels of T4/3 already in your blood , apart from to wait for them to go down, but the body knows how to get rid of 'too much' very effectively, so don't worry.See how you feel after a couple of days on 40mcg, and come back here if you need to.

[michellerace1986 in reply to tattybogle]

Do you know the affects of if u have other things that affect hormones while u have this as I have had the depo injection and today I had the implant xx

[tattybogle in reply to michellerace1986]

A far as i know, neither of them have any impact on the effectivness of carbimazole, and carbimazole (or High T4/3 levels) don't have any impact on the effectiveness of either of them.

I've not looked into it , but i've never seen it mentioned on here.

so i wouldn't worry ...

And anyway even of they did ..... you still need to take it to get T4/3 levels down ... and you really don't need to get pregnant.