Carbimazole : I've been on this horrid medication... - Thyroid UK

Thyroid UK

141,244 members•166,489 posts

Carbimazole

•

I've been on this horrid medication for about 5 weeks and this week started to feel as if I was coming down with a cold, now started with a sore throat and really extreme fatigue - guidance says to stop taking and talk to GP and obviously I'll never get an appointment on a friday for this year?!, if I stop taking pretty sure I'll become chronically ill with the Graves symptoms - not had my blood results yet and don't think it's working anyway but should I stop taking it? feeling like I am going to go to sleep and not wake up which wouldn't be that bad of an option but .... :/

Read more about...

Carbimazole

The ability to reply to this post has been turned off.

20 Replies

•

1 year ago

Just to note I feel like I am getting tonsillitis .... no fever yet but that how this feels

SophiaSong• in reply to1 year ago

What is your dosage

helvellaAdministrator• in reply toSophiaSong1 year ago

When you see a user name of Hidden, it means that the person is no longer a member of this forum.

We often close posts that were originated by members who have now left.

Sometimes the information in the thread is out-of-date. Mostly, members will not even see any replies that are made (unless it happens to be noticed in the news feed). That makes it unlikely you will get helpful replies.

helvellaAdministrator1 year ago

It is not something to leave over a weekend.

Suggest you try your GP for an urgent appointment, failing that try 111. And failing that, go to an A&E. The most serious issues, which can start just as you describe feeling unwell and sore throat, can develop in hours.

Carbimazole starts to work very quickly indeed. But once you are hyperthyroid, you have an excess of thyroid hormone in your bloodstream, etc., and that takes some time to reduce.

Many hardly notice any changes until that drops. If you stop, that will rise again. And in turn delay real reduction in level and feeling better.

If you cannot tolerate carbimazole, you could be prescribed propylthiouracil (PTU).

• in reply tohelvella1 year ago

feel too tired to sit on the phone for hours waiting to get through to GP etc, might go to bed for a while after I log off work and see how I feel later on, defo can't go to A&E as live alone and quite far away ... I'll die once though right?! ahahahah I am probably just over thinking/reacting tbf it's likely tonsillitis, I've been really busy lately so I am probably run down, just overthinking it I am sure HAve a great weekend and thanks for responding

helvellaAdministrator• in reply to1 year ago

I fear you are trying to minimise the issue. (And there is a positive side to doing so.) Sure we all hope you are just feeling a bit below par today.

If you feel too bad to make a call now, I worry that you'll feel even less like making a call if you take a turn for the worse.

But don't hesitate to call 999 if needed.

• in reply tohelvella1 year ago

Thanks

Finished work early and Had a little nap and this defo feels like tonsillitis and wouldn’t surprise me as I do have a lot going on … I’ve been prone to it in the past so it would make sense …supposed to be having a medication review with GP as moved county so newGP and they can’t get me in until 7th September so I’ll not get in before that for an appointment… I hate DRs anyway lol

SlowDragonAdministrator1 year ago

Suggest you reread your previous post

Get an appointment with GP and get full iron panel test including ferritin, B12, folate and vitamin D levels tested

vitamin deficiencies extremely likely with Graves’ disease or Hashimoto’s

You are on a highly restrictive diet

You need TSH, Ft4 and Ft3 retested too

• in reply toSlowDragon1 year ago

My diet is fine - I get everything I need. I do occasionally eat some meat or fish although I’m not keen - and yes I avoid grains, dairy a few other bits and soy but I eat lots of nuts fruit and vegetables and I mean lots and I do have dark chocolate as I decided I’m not giving that up and I still gained weight so it’s not restricted enough in my opinion.

My blood work has never shown a deficiency in anything all numbers and Drs said everything is normal and a full count has been done whilst I’ve been diagnosed with this awful disease so I don’t think there’s an issue there tbh. I do feel like my thyroid symptoms are 100 times worse since starting the medication as well as a load more so maybe I’m destined to just live like this now 🤷‍♀️

SlowDragonAdministrator• in reply to1 year ago

Can you add actual results for

B12

Folate

Vitamin D

Ferritin

These need retesting again since being on Carbimazole as this will affect nutrient absorption

Weight gain is usually a hypothyroid issue

Weight loss usually when hyperthyroid

• in reply toSlowDragon1 year ago

My GP previously was very very negligent it was one of the reasons I moved (home and medical care) county tbh - a long boring story I won’t go into so I’m lucky I get tested for anything Ahahaha

The consultant isn’t much better and states my diet won’t impact my hyperthyroidism at all doesn’t even recommend cutting iodine … I’ve moved counties and the care is just as abysmal so it’s a me issue … drs hate me 😂

I can’t really afford private testing so I’ll just have to hope as the last blood test form had T3 T4 and on Carbimazole on it and that’s it I was called up for a full blood count earlier this year and it looked normal … drs get angry and I mean angry if I ask questions at appointments so I’ve given up on that.

I never lost an ounce during my diagnosis - I gained loads with graves and have continued to do so … the main reason for my restriction and subsequent depression.

I’ve been ignored my entire life by “professionals” which has nearly cost me my life several times - at 43 it’s not about to change - I’m finally starting to take the hint 😂 and I’ve stopped asking questions - I go to the appointments I’m told to - report what they ask for - it doesn’t get noted - my records are changed to suit their moods and that is it I’m sent away to fight another day. if I am (which I don’t think I am I think I have a virus) having a reaction whether I report it or not I’ll be left ignored etc it’s guaranteed… I know this doesn’t happen to everyone and I’m so so happy it doesn’t but I have a catalogue of neglect that’s so ridiculous it’s genuinely quite funny

SlowDragonAdministrator• in reply to1 year ago

Weight gain suggests you perhaps need dose reduction in Carbimazole as now might be hypothyroid

Test early morning and only water between waking and test

Ask new GP if they will include testing vitamin levels as well at next thyroid test

Monitor My Health now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65

(Doesn’t include thyroid antibodies)

monitormyhealth.org.uk/full...

10% off code here

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

• in reply toSlowDragon1 year ago

Thank you I don’t think it’s gone the other way as still have hyper symptoms … I just gained a lot with Graves and will probably must keep doing so

I don’t get a choice in when they test my bloods they tend to just give you an appointment

£65 I don’t have atm but I’ll keep a note in case I get some money but unlikely

Thanks for input I’m sure I’ll be fine

pennyannie1 year ago

Hey there again :

i understand your reluctance to go anywhere or see anybody as you have always been fobbed off and not listened too - snap :

But when I was eventually diagnosed Graves and put on Carbimazole in 2004 it was stressed to me that I must go straight to the hospital if I found myself with a sore throat etc.etc.etc:

As mentioned on your first first post/question there is an alternative to Carbimazole and A&E is where you need to be this side of the weekend - do not delay -

You will not be fobbed off - Graves Disease is life threatening if not treated -

please call 111 if you can't make your own way there and transport will be arranged.

I am not being alarmist - just concerned for you :

• in reply topennyannie1 year ago

thank you

It definitely feels like tonsillitis- I think I’m overreacting tbh but thank you x

pennyannie• in reply to1 year ago

Why not be sure rather than " think " - you are not the medical professional -

whilst I commend your efforts in trying to solve your health issues naturally by taking the Lemon Balm, motherwort and bugleweed you are now out of your depth and need medical help and support and hopefully this time, it will be there for you.

Graves thrives on stress and anxiety and will drive up your immune system response further :

We tend to overthink and that mouse becomes an elephant - put your mind at rest - you are not wasting anybody's time - the drug doesn't suit and you need the alternative AT drug PTU - end of :

helvellaAdministrator1 year ago

How is it going?

• in reply tohelvella1 year ago

No change in symptoms - phoned gp and consultant - no response nor do I particularly care anymore tbh

pennyannie• in reply to1 year ago

I'm sorry to read this - nothing to add and sound like a broken record, as am still thinking A&E is your best bet :

1 year ago

Just an update - I believe it was me just being horribly run down from the house move that resulted in cold/flu like symptoms - however, I am not actually any better, cold symptoms slowly went away but everything else? nope :/

Not asking for responses really just updating on whats happening as others may want to know - I've been so busy with a gazillion different things this is the first time I've had to update and I had sort of given up as the depression has kicked in pretty bad due to my treatment by professionals .... I was gaining weight, feeling really sick (stomach was churning again etc) and had bruising and spraining things really easily? but my endocrinologist wouldn't respond to my attempts to make contact (it's a me issue I am 100% Healthcare - despite me working in it - just wants me dead and I am still trying to work out what it is I've done wrong ...) anyway, still I've had any real contact from my Endo, apparently regardless of how I am feeling he is only interested in my numbers, and just copies me in to letters to my GP - which endo stated the bruising and other symptoms wasn't a side effect of the medication - I never receive anything directly and he's delayed sending me the forms for blood tests etc - so reluctantly I have asked to be discharged from his care back to my GP. I really didn't want to go down that route a second time but .... what else am I meant to do? My new GP surgery seem a little more on the ball and I have a phone call tomorrow to discuss how we manage this without an endo going forward.

Side Note: I am an employee of the hospital where I am being seen by the endo 🙄 my colleagues are dumbfounded at my treatment too ...

My T4 17.5 and T3 5.06 came into normal range but my TSH 0.01 stayed but as I continued with GI issues and chronic fatigue I reduced my dose to 5mg every other day so T4 has crept back up to 22.7. I might try taking 5mg per day and see if that settles it ... although not sure why my TSH0.01 is still supressed, but frankly like I say I have kinda gone passed caring - anything slightly near feeling normal I think I'll take it.

I am trying to introduce dairy, rice and meat back into my diet - grains as a general rule are really upsetting my stomach even more .... dairy, not so much 🤷

I am now considering - regardless of consequence - starting smoking again after two and half years smoke free due to the chronic depression (I am medication resistant) and general misery of this condition I am really considering it, just for some light relief a couple of times per day - now if you'll excuse me I need retch some more .... 🥴 really hoping people are having better experiences with their healthcare professionals.

The ability to reply to this post has been turned off.