30GRAMS OF CARBIMAZOLE AND FEELING EXHAUSTION

[NIKEGIRL]

Hi. I have started taking 30mg a day of carbimazole. Been going for 4 days and I feel very unwell on it. Body feels like stone and feel dead after the legs. Is this normal? My neutrophils are low at 1.7 range (1.9-7.5). They are mildly lower than the range. I don’t have a sore throat or mouth ulcers but feel exhausted. Will this pass?

[Hennerton]

You need to give more information. Who diagnosed you and what were the blood test results, with the reference ranges? It seems quite a high dose to me but we cannot comment without these. Do you have Graves’ disease? If so what were your antibodies? Doctors often get this diagnosis wrong, so do post as much info as possible.

[NIKEGIRL in reply to Hennerton]

My bloods are very bad.

TSH <0.001

T4 <100 range (10.0-24.0)

T3 48 range (2.5-6.0)

Definitely Graves with antibodies at 453 for TRAb. Hope that right. I don’t feel nausea just incredibly unwell. Lethargic and legs just feel so heavy. I just wonder if it will pass.

[pennyannie in reply to NIKEGIRL]

Your blood aren't " very bad " - there's no good or bad - they are just a snapshot in time as to where you are in this phase of the illness.

The AT drug, Carbimazole is now blocking your thyroid hormone production and given a week or two, you'll see these numbers come back down and your symptoms reduce.

[NIKEGIRL in reply to pennyannie]

Yes that is a very good and true perspective. I just want to not feel physically lethargic. I am the only person with an income and my husband and two university attending children rely on me. There’s a lot of pressure. I will get there. A psychologist will help. It’s actually a psychiatrist. My new GP said I went through a lot of trauma and need help understandably. It will be ok. It might not be today or this week but ultimately I will get there and it will be ok. I just want to say thank you. Sending you virtual hugs and kisses 😚

[pennyannie]

Hey there again:

I think this phase will pass but you do need to be listen to your brain and body, and it's about time you get signed off sick and give yourself time to adjust to all that has happened.

You know you are burnt out, you've acknowledged this - allow yourself time to recover.

Realistically, what would you advise someone who feels like you, to do ?

It is important to keep an eye on your low white blood count, mine was below the range, but I didn't have the sore throat or other side effects :

Yes, you will also be exhausted - it's no fun - but it does pass - if you let it - and start forgiving yourself for being unwell - and start taking time to mend your whole " self " :

[NIKEGIRL in reply to pennyannie]

Thank you. Love u. I hoe this finds you well. You are right. I think it’s time to get time off work. Kindest regards always NIKEGIRL

[pennyannie in reply to NIKEGIRL]

Hey there again :

Just look back and understand that this disease has been " creeping up " on you for several years and it's not gonna go away overnight :

Look back and understand all that you have been through and throughout you have held things together for everybody else, and soldiered on, irrespective of your own " self " .

Your body and brain have now had enough and you need to stop before you go " Pop " :

Going to a swimming pool to spend an hour relaxing in the pool is one thing - working in this overheated environment for any length of time must be awful as it must be a bit like walking into and working within a turned on oven.

Your brain and body are running too fast and independantly and not balanced or synchronised so you do need to tell yourself to rest since your brain is in overdrive whilst your body is " burnt out " heavy, tired and exhausted.

Your clarity of thought may well be confused and inconsistent and you really do need to trust in the medical advice you are given as you are not in the right head space to do this alone.

[NIKEGIRL in reply to pennyannie]

Yes if I look back I was in trouble with my thyroid as far back as 2012 when I was competing as a bodybuilder. I am just grateful I have a new dr who I like and will there through this. Working in a swimming pool is hot. My co worker is crap. She will leave the pool when there are people in it and it is essentially unattended. Work is hard. Not the heat. Just the crap staff. I know I have to face this. There is nothing running fast in me. I am tired. Home life is hard and work life is hard and money is hard. I need to look after me and that’s what I will do. I find support from all the people here including yourself. I’m going to need more of that support. It will all work out. I just can’t feel so physically sick. That’s what I struggle with. The lethargy. It’s hard.

[Lora7again]

I think you might need to lower your dose. Can you ask you doctor about doing this? I stopped taking PTU cold turkey because my TSH was 9 and I felt ill. I wouldn't advise this but my endocrinologist was useless and wasn't monitoring me properly

[NIKEGIRL in reply to Lora7again]

My bloods are really bad. Like really bad.

TSH <0.001

T4 <100 range (10.0-24.0)

T3 48 range (2.5-6.0)

Hence the large dose of carbimazole. I just feel very unwell. Not nausea but just lethargic and unwell. I really need these drugs. I just wonder if it will pass or I will feel unwell for the next 8 weeks until the levels come down. Thanks for replying to the post. Appreciated with heartfelt gratitude

[Lora7again in reply to NIKEGIRL]

Carbimazole did not suit me so I took PTU which didn't give me so many side effects. My levels were not as high as yours even though I had gone untreated for over 2 years and I looked and felt really ill. My hair had gone really thin and some of my nails had dropped off and I was a size 8 which is much too thin for me. I actually had a thyroid storm last July and was admitted to hospital with a suspected heart attack. Luckily my heart is ok but it was a very frightening experience.

[NIKEGIRL in reply to Lora7again]

I don’t know what to say. Yours is pretty bad. Mines not that bad. I haven’t done the carbimazole because it makes me so sick but I have a new dr and he’s just too bloody nice. I promised him I would take the drugs. He has told me several times he is worried about me. I don’t want that for him or anyone else. I think I’m sick because of emotional stress. I just wanted to know if this phase would pass. I hope you are making progress on your wellbeing. I’ve got a psychologist, medical herbalist and a good GP so I hope I am set for a good journey. I need to get well, I want to bodybuilding again. Kindest regards and fondest wishes NIKEGIRL

[Lora7again in reply to NIKEGIRL]

I am actually ok now because I am in my second remission so hopefully you will be able to get there eventually. I have regular private blood tests just to monitor myself because the NHS labs will only test the TSH and if it is in range they don't test anything else.

[Valarian in reply to NIKEGIRL]

30mg/day of carbimazole isn't a particularly high dose to start with - 40mg/day is quite common. Provided you take it regularly, your thyroid levels shpld come down and your doctor will be able to reduce the dose. However, you can't rush treatment for Graves' - you are likely to need to continue taking it for twelve- eighteen months altogether.

[NIKEGIRL in reply to Valarian]

Thanks again. I know I’m in for the long haul. Slow and steady wins the race. That’s my mind set. Oh please don’t say 40mg. 30 is plenty cheers. Kindest regards NIKEGIRL

[Valarian]

From other posts, it looks as though you were originally diagnosed (couldn't find it just now, but I'm pretty sure I saw a positive TRAb result somewhere in your posts) and were prescribed carbimazole a couple of months back, but that you haven't been taking the carbimazole consistently, and that you may recently have changed medical practitioner.

The symptoms you describe are very common with Graves'. Most people who've suffered Graves' will tell you they have never felt so ill as when it was at its most active. The good news is, it will get better. The bad news is that carbimazole doesn't destroy existing stores of thyroid hormone in the body, it can only reduce new production, so it can take up to eight weeks for the existing excess hormone to be used up, and for you to begin to feel noticeably better. You need to take your medication consistently, as otherwise your Graves' is likely to take off, and you could become very seriously ill indeed.

You mention low neutrophils and that you don't have a sore throat or mouth ulcers. I presume that you are worrying about agranulycytosis - however, note that this is a very rare side-effect of carbimazole. If you have a sore throat or mouth ulcers, definitely get a blood test as soon as possible; if you don't have these symptoms, focus on taking the carbimazole consistently to bring your thyroid levels down, as your immediate big risk is from untreated Graves'.

Elsewhere, you've been worried about vitamin and mineral levels. Graves' messes with the digestive system (there is nothing like active Graves' for making you realise how important a well-regulated thyroid is to every system in your body !), so unless you have major deficiences which clearly need supplementing immediately, the best thing for the next few weeks would probably be to eat a normal, well-balanced and varied diet, with sufficient calories for your needs (which may temporarily be greater than usual). Once your thyroid levels are stable and within range, you could take another look at vitamin and mineral levels.

You won't like me for saying this, and (as a Graves' sufferer) I do understand how difficult it is to deal with: anxiety is a symptom of Graves; almost everyone with Graves' experiences it to some extent, even those who normally have no issues on this front. The thing is, anxiety and stress typically make us feel worse, and it becomes a vicious circle, so you need to try to get it under control if you can. Listen to some beautiful music, go for a walk in the fresh air, try some yoga...whatever works for you. It may sound corny, but honestly, it can make a big difference.

[NIKEGIRL in reply to Valarian]

Thank you for your post. So much of that makes sense. It has taken me 3 months to come to terms with what is happening. I have lost trust I doctors. Long story. I have found a food GP who seems to genuinely care so I have to take that help. I know if I made a promise to him I would have to go through with this. I am not upset by your last paragraph. I understand. It’s good to know Graves is associated with high neutrophils. I am taking the carbimazole consistently now. When I dont take the carbimazole I feel better than now but I understand that I need these drugs. You’re right about vitamin and minerals. I leave that up to another person to sort out. I have a good GP, medical herbalist and I’m going to psychology to help me with regards what happened to me when my children were sick. Daughter had 3 benign bone tumours. Boy had nerve damage undiagnosed for 5 years and a torn hip from being the goalie at football. A lot of talk about suicide. Husband had two surgeries. Father in law died so my husband went to England twice. Now my husband has lost his job with Covid. It’s just a lot. That’s why I think I am sick. A lot of big life events consistently over 6 years. It will take time but I will get there. I just want to say thank you for your post. Everything makes sense. Everyone on here is amazing. Pennie Annie is someone I can relate to and have a lot of respect for. Thanks again. Your insight has helped.

[elderflower2016 in reply to Valarian]

Valarian I think you are mistaken. Agranulycytosis is when your neutrophils and therefore WBC get really low and can be a side effect of Carbimazole. However, in Nikegirl's case, her neutrophils are just slightly below range; she just needs to watch it. I remember that my neutrophils did dip slightly when I was first started on Carbimazole and recovered afterwards. I agree with everything else you said about Graves.

[Valarian in reply to elderflower2016]

sorry elderflower2016 , brainstorm, I'll correct ! My main point was that it isn't something Nikegirl currently needs to add to her anxiety levels, just something to monitor in the background as her doctor appears to be doing. If they remain low and carbimazole appears to be the culprit (by no means sure here, as adherence has been an issue), they could try PTU...but that has side-effect issues too.

I had hives when I first started to take carbimazole, It happened to be the beginning of the tree pollen season, and I discovered that ordinary antihistamines mostly solved the problem. By the time the hay-fever season had finshed, I stopped taking the tablets but the hives never returned...sometimes it takes a while to adapt.