I was hoping for any advice regarding odd thyroid or possible medication effects?
I was diagnosed with Graves March 2019 and been on a reducing dose of Carbimazole (initially 20 mg daily and now I’m on 5 mg)
I seem to have these dreadful cycles of Fatigue, large blood blisters and mouth ulcers and weakness in my arms, there’s also an awful death like smell that comes out of my skin and in my breath, usually every few weeks for a few days?
My other bloods such as Full blood count/kidneys etc are totally normal. I’ve wondered if it’s influenced by a hormones? But they are new symptoms since all this began.
I can’t often explain the sudden drop in energy, blisters.. it’s like someone pulled the plug out!! Some days I feel normal, other days I feel dreadful.
I’ve been on the same dose of the Carbimazole for 12 months now but my levels seem to dip and level out at each blood test and I’m thankfully awaiting a total thyroidectomy.
I just wondered if these hideous effects are caused by the Carbimazole or a dodgy thyroid? Or both!
Has anyone else experienced this? I have lived in hope that once I have the thyroid removed that these symptoms will be gone. I don’t seem to be able to find much to suggest either way.
Many thanks for any help or advice
Ally
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I had Grave's disease and also had episodes of fatigue. However, i saw that exercise helps. I can't do intense exercise so i have only been walking. My dr told me once that carbimazole can weaken the immune system. So i am told to come back to her immediately if i get flu, etc. You can talk about it to your doctor. Hope you feel better soon.
Btw, i know i am not in a position to say this but i just got worried about you having thyroidectomy. This would mean that you have to take the meds all your life. My endo suggested that to me also but i dont want to since meds have terrible side effects on me.
Carbimazole did not suit me and I came out in a nasty rash so I changed to PTU which is an older trusted drug. As for having your thyroid removed I would research that because a lot people struggle afterwards to get the correct treatment.
Elaine Moore had RAI and regretted if afterwards so she started a support site. I would have a look at her site because there is a lot useful information on there.
I too have Graves Disease and had RAI thyroid ablation in 2005 and now manage lingering Graves, thyroid eye disease and hypothyroidism.
Graves is an autoimmune disease and as such, it's for life, it's is your blood and DNA :
When Graves attacks the thyroid the symptoms can be, in some cases, life threatnening.
This is because the thyroid is a major gland and responsible for your body's synchronisation, your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
Your thyroid is the victim in all this and not the cause, as the cause is your immune system attacking your body.
Calm down your immune system and you are half way to solving the situation you now find yourself in.
Anti thyroid drugs like Carbimazole block your own thyroid hormone production and then over time the high levels of thyroid hormones already in your system slowly go back down into range, your symptoms reduce and the AT drug lowered to very small levels with a view to removal to see if you are able to find remission with no drugs, and a thyroid working back in normal rhythm.
Generally the NHS give around a 15 month window for treatment with the AT drugs and if remission isn't posible more drastic actions are suggested.
Throughout this time the NHS do not really work at the underlying issues of the immune system as they haven't cure and don't know how to control or reduce the autoimmune component of this disease.
If you don't know of the Elaine Moore Graves Disease foundation trust website you might like to dip in and read around this poorly understood and badly treated autoimmune disease.
There are many sections within Elaine's website and she has spent much time researching ways to reduce and calm down one's own immune system through natural, more holistic life style and diet options, and it is very important that you have an understanding of how your whole body is under the stress and anxiety that is Graves Disease.
There are people who find remission, and this phase of the disease is over and discharged.
There are other people who stay on long term anti thyroid medication for many years.
There are other people who have their thyroid surgically removed :
Whilst others are given RAI thyroid ablation.
Graves ravages the body and it will be a good idea to ensure that your core strength is strong and solid and ferritin, folate B12 and vitamin D are these building blocks.
There are side effects to Carbimazole, and a sore throat and mouth ulcers, are I believe, things to look out for especially at the beginning of the treatment, and there are alternatives to this medication if it doesn't suit you.
There is a possiblity that your levels of T3 and T4 are now too low and that your AT drug may need adjusting but without current blood test results I'm just guessing, which doesn't help you.
Has your doctor, or endocrinologist any suggstions as to these current symptoms ?
Do you have any blood tests and ranges to share with us ?
Do you have a positive and over range result for either TSI ( roughly translated as a stimulating ) or a TR ab ( roughly translated as a blocking ) antibody blood test result ?
Do you have the very first blood test result showing T3 and T4 results when diagnosed ?
Hi Ally , I feel so sad for your situation at this moment . You are obviously frustrated and fed up with how things are right now . Things will improve and change very much for the Better though .
You are already on the road to your recovery by taking Carbimazole.
Carbimazole is known to often cause bruising which, I’m sure is why you’re showing blood blisters .. it certainly causes mouth ulcers too , and in some people, worse than others .
Your Oral Hygiene must be tip top right now ....
Brushing with a SOFT brush after all food .
And if antiseptic mouthwash isn’t possible .. then warm water with a teaspoons of salt swirled around your mouth any time day or night is good.
As for the Odour.. apparently us HYPERthyroid or GRAVES sufferers who 💦 sweat a lot are very liable to have this Problem Because of the compounds and bacteria that are leaving the body through our obvious exits ..
Again, the solution to that is hygiene there is a great product called DERMOL 500 Lotion , which you can get on prescription from your Dr.
Use it instead of drying soap as often as you like ... everywhere also in the shower or bath .
One of the MOST. Important things for us .........is to drink as much WATER as we can safely do..... particularly whilst taking Carbimazole
Lots of water and high dose of VITAMIN C is advisable .
I would also ask your Doctor if your blood sugar can be tested, as Diabetes can cause an odour and breath issues.
The weakness in your arms .. and maybe even your thighs and calves is likely to be that your muscles because of your HYPER. State , has caused some deficiencies because you have been “running on empty”
Because your Metabolism is out of Sync.
That can be Addressed with taking Supplements
.. B12, D3 + MK7 and
Magnesium to name a few .
You can feed your muscles to regain strength and lose the pain you feel ... by taking the correct Vitamins , Minerals
And Nutrients.
The Drop in energy ( FATIGUE ) that you feel is dreadful .. and when it starts it floors you .. but again it will be addressed by taking the right Vitamins , Minerals and Nutrition
Please open a new post after this one , then you can print your latest blood test results .. that will give kind people on here a better view of your issues and therefore you replies will be much more beneficial .
I know you must be thinking that you need to rid yourself of all these issues and it would seem that by removing your Thyroid Gland .. you will do that
BUT
I was extremely ill when I was diagnosed with Graves’ disease in 2014
And I was told by my neglectful GP .. that I should just take ...Radio Active Iodine to “burn it out “.
or if that didn’t work .. then Surgery to remove it !
I was horrified .. and I made up my mind there and then NOT to do either of those things .
I was going to try my best to keep my very Precious Thyroid Gland .. and I have ...and I feel so much better in every way now .
It can be done .. Thyroid hormone is needed for every cell in our bodies in order to work and stay well .... and I
Wanted to help mine stay well and healthy by looking after it ... so that it continued to look after me .
Please read , Google and learn everything you can on here regarding the working of the Thyroid Gland , to educate yourself on taking care of your Thyroid and therefore your body .. and bring it back to good health .... many of us have done this .. it’s very possible .
Be kind to yourself at this time , you need rest and care .. you can supply both .. you are in control .. it’s your body try to learn what it needs to be well again .. be strong and TELL your doctor what YOU WANT .
Interesting that you’ve mentioned high dose vitamin C.
When I collected my first prescription for carbimazole - started on 20mcg for four weeks then increased to 40mcg for a year as part of my block and replace treatment - my pharmacist came out and told me to take a high strength vitamin C so I always took 1000mcg slow release vitamin C. I had no problems taking carb and I’ve always put it down to the vitamin C.
Me too Fruitandnutcase.. I found that info on Google .. God Bless Google !!
... and You... for spreading the word😘
I did a huge amount of Research to help myself, as my GP seemed to know Zero about my , or anyone else’s , Thyroid Gland
Only that he seemed to love the Effect that RAI Had on the Thyroid Gland
.. i.e. ... to Destroy it !!
Like you, I had a very successful Experience with Carbimazole .. started with 20mgs, then 10mgs , 5mgs and finally 2.5mgs I couldn’t believe how well it had worked as I had been very ill with Graves .. for a long time with no help whatever.
That was then .. and all that research and thus Sure has seen me through the misery of the Past .
Wow, truly thank you so much to everyone for your very insightful and supportive replies, it’s really a relief to talk to people who have or are living this awful condition and it really helps to understand what I’m dealing with!
I can’t believe I haven’t heard of Elaine Moore - I’ve had a quick dip into the website just now and it looks so helpful, will definitely be giving it a good read.
Thanks everyone - it seems a lot is often explained to me as ‘dodgy thyroid’ and politely told to live with it!
As a nurse for many years myself I’m seeing first hand the fixation of what’s ‘ in range’ rather than how the person feels and realising that my own range hasn’t been found yet.
I will certainly dig out my blood results and create a new post with these. It seems I started with a TSH of 0.05 but normal T3 and T4, underactive for a while and slowly climbed into normal, back into slightly low T3 on my last bloods.. I did query this with Endo but advice was to continue with the 5 mg of Carbimazole.
Is it normal to be on the same dose of Carbimazole for 12 months and have different readings each time? Again, I have queried this with the GP/Endo and the explanation is it is a diseased thyroid!
Sorry to throw so many questions into the ring but I can’t say I have any concept of feeling full anymore either, is this normal! To be continuously hungry despite eating plenty?
Thankfully I had a hba1c and random glucose test which were normal a few weeks ago. The only abnormal reading was elevated B12... no one was particularly worried about this.
Something I forgot to say, which is quite significant, is that this was first picked up due to having very heavy periods (!) and actually I was 2 stone heavier when I first commenced treatment... not textbook! It was found due to a good GP trying to Figure out the issues I was having with starting a family but no success. It all came as quite a shock as suddenly I was told to hold fire and the risks of going into remission, becoming pregnant and triggering it all off again seemed like not a good option for me. I categorically just did not want to ingest Radioactive iodine either which was an easy decision!
I had another blood test last week so I eagerly await the results... seems I was running at 3.8 on t3 last time a few weeks ago which I’ve excused the fatigue, blood blisters and general slowness too a little bit.
Thank you for reading and the support... hope someday I can offer the same to someone!!!
It can be confusing, and guess it's all down to the knowledge, understanding and experience of doctor and endocrinologits.
I went to the doctor with exhaustion, insomnia and dry gritty eyes, thinking I was anaemic and phoned the following day at work to come back into the surgery same day, and thinking back although my treatment was handled by the hospital I don't think I ever saw the same face twice, as they seemed to be on a 6 month rotations, so how would any of them know the consequences of their actions anyway.
The doctor asked me to hold out my hands, and held them, and said you have Graves Disease, but don't worry it's not as bad as it sounds, and yes, look your hands are clammy and put your hands out in front of you, and look there, there's a mild tremour in your middle finger.
I knew nothing, and in 2005, access to anything, not really easy, and I simply accepted everything I was told, took the Carbimazole, which relieved the insomnia and carried on, as you do. At my very first hospital appointment I was told I was to have RAI the following year, there was no discussion, no options, and I was totally compliant, as knew no different.
On Carbimazile I did experience some typical symptoms, like eating for England though loosing weight and guess it's all about whether you have predominently blocking or stimulating antibodies controlling your metabolism and if your dose of the AT drug is enough or not, in blocking additional thyroid hormones.
Yes, a T3 of 3.8 sounds very low so you may now be more hypothyroid than hyperthyroid - as these are the 2 ends of same scale - too little T3 and you have Hypo symptoms - too much T3 and you have Hyper symptoms :
I'm glad you've dismissed RAI as I deeply regret this treatment and in reality it has simply compounded my health issues, though the NHS would disagree as they can manage me, and put my bloods into ranges considered ok - when I am clearly not ok.
I now self medicate and buy my own full spectrum thyroid hormone replacement as the NHS currently, routinely, just offer T4 - Levothyroxine and no other treatment options, irrespective of whether you have a thyroid or not.
A fully functioning working thyroid supports you on a daily basis with trace elements of T1, T2, and a rough guess estimate of 10 T3 and 100 T4 and calcitonin.
In other countries around the world after thyroid loss, either through a thyroidectomy or thyroid ablation you may be offered : T4 - Levothyroxine : T3 - Liothyronine : or NDT which is Natural Desiccated Thyroid, and pig thyroid dried and ground down into tablets referred to as grains, and which contain all the same known hormones as that of a humans gland and was used successfully for over 100 years prior to the introduction of blood tests and ranges to be used alongside the new thyroid hormone replacement called Levothyroxine.
Currently NDT is meant to be available on a named patient only prescription and finding a doctor prepared to support your request to the CCG for funding - a challenge.
Currently T3 is only prescribed by an endocrimologist and CCG areas throughout the country have suggested that no new prescriptions be written for T3 and those patients already on T3 should be encouraged to a lower dose and a switch back to T4 only if possible.
3.8 is low end of range (going by most ranges, they vary between labs). Review your FT4, that’s likely low too, then I would argue for lowering dose.
They may be leaving you on 5mg as they see it as the lowest dose available. You agree to take on alternate days or invest in a pill cutter and take 2.5 per day.
Doctors should always be aiming for lowest dose for FT3 &4 in range. They should not be adjusting doses by TSH which lags behind considerably.
I also have Graves’ but was only officially diagnosed less than two months ago. I would do a bit more research into the thyroidectomy. It’s possible that removing your thyroid could make things worse. Because the fundamental issue with Graves’ is autoimmunity, your body may simply find another organ to attack. For example, if you have thyroid eye disease, that could get worse after RAI or a thyroidectomy. I’m not trying to scare you but please consider all your options carefully so that you’ll be confident in your decision either way. If possible, don’t be in a hurry to do anything drastic before you’ve had time to carefully consider all your options. Take care of yourself x
You’re so right Bellazzurra, no one should ever let themselves be pressured into having RAI and especially not without having tried everything else.
I was told at most of my appointments after my first one that should I relapse I would have RAI. I told them at every appointment after the first one that I didn’t want it under any circumstances. I was allowed to get hypo during my treatment and hypo wasn’t nice at all - different to being hyper but pretty awful and no way did I want to end up permanently hypo because I had no thyroid.
At one visit when I said no to RAI, the young endo I saw held up her thumb and finger holding an imaginary pill to show me what a tiny pill it was. Then she actually said I wouldn’t become hypo! I pointed out that without a thyroid there was a pretty good chance I would but I’d say she wasn’t convinced.
Then once I was discharged in 2013 I saw my GP and asked if they could force me to take it - no - and could they refuse to treat me if I refused their RAI - no.
So I went off home, ate well, cut out junk foods, exercised sensibly and did regular home fingerpick testing to keep an eye on my thyroid, vitamins and minerals etc so that they are all in a good place.
Once your thyroid is gone, it’s gone for good, I’m not sure it always makes your life better, obviously some people are fine but lots of people aren’t.
I’m too old for that sort of thing but for young people I’m sure that in the not to distant future there will be much better options than RAI.
Hello Fruitandnutcase! I’ve also gotten hypo during my AT treatment and it was terrible! I hope we get better options in future because RAI isn’t it. Doctors downplay the risks. Thank you for sharing your inspiring experience of using good food, moderate exercise and regular blood tests to keep Graves’ in check. Have you been in remission since 2013? I will have to give the high-dose vitamin C a try; I didn’t know about it.
Yes, I’ve been in remission since then. I felt worried that should I relapse I would be pressured to take RAI so I saw my GP and said that I didn’t want RAI and could the hospital insist or refuse to treat me if I refused RAI and the answer to both was no. Once that worry was sorted out - I felt worry wouldn’t be good for me - I just worked on everything else.
I also went totally gluten free a couple of years later when I developed inflammatory arthritis- another autoimmune condition. Once I went gluten free I noticed that my thyroid antibodies and my CRP all massively reduced. Could have been being gluten free or it could have been that it was time for those levels to fall. My IBS improved so much once I was GF that I wouldn’t eat it again. I didn’t test first though and I’d suggest it might be worth doing that before you try GF because if it makes a difference you won’t want to start eating gluten again to be tested. I’m not bothered about test results, I just stay off gluten.
That’s amazing that you’ve been in remission since 2013; you give me hope 💗
I hope I’ll go into remission some day sooner rather then later. I’ve been GF for over two months because I’ve been following the AIP protocol, wish I’d checked before I went off gluten. In the past, I had really bad IBS when I was eating lots of whole grain foods like Ryevita, Kamut, wholewheat bread and oats. I never had the same issues with refined foods that contain gluten like white bread or pizza. Since I started taking Carbimazole, it seems that my IBS has come back (albeit in a milder form). It’s strange because I’ve cut off trigger foods like gluten, dairy, soy, oat etc.
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