Hi all! First time posting! So difficult to find information that isn’t scary sometimes on the internet! Came across this site and everyone seems helpful and welcoming! So I’m hoping to get some advice!
I was diagnosed with an overactive thyroid back in 2012 but it wasn’t so overactive it initially needed treatment. I started carbimazole almost 3 years ago as they felt it was no longer safe to not treat. However, they did also mention wanting to “shock it into doing something” as my levels weren’t budging. I wasn’t really in favour of starting meds, I’m not a fan for whatever reason! And rightly or wrongly I have suffered with anxiety massively since starting this medication.
It would be wrong of me to say I’d never had it previously! As I’ve had it since a child on and off. But drs aren’t sure if this is because I’ve always had a thyroid problem (was it the chicken or the egg!) or is it a completely separate issue?
So anyway because I’m struggling with these symptoms and am only on 10mg a day of carbimazole currently they want to up my dose to 20mg.
Initially I was on 5mg and when I was put up to 10mg prior to this I suffered horribly with low mood, exhaustion etc before they took it back down again. So to jump to 20mg now to “hammer it” (their words) is worrying me! The low mood was low! I mean miserable, numb and just complete opposite of myself.
And I know from reading through the posts 10mg is actually a very low dose.
I’m worried about additional side effects though?? Sickness? Something I have a phobia of (I sound very dramatic and high maintenance I apologise) Or dizziness which I did experience previously and wasn’t fun.
Have any of you suffered side effects by doubling dose? Or have any of you felt amazing! The drs are trying to see if they can “hammer it” into a normal range whether the other symptoms I have go or whether they are infact completely separate (palpitations, constant hunger, anxiety, emotional etc)
They ultimately want me to have it removed. But one step at a time!!
Apologies for the long drawn out post! I only have people around me that don’t understand how such a silly gland can cause so much difficulty!
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Kelz21
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For members to comment we really need to see blood test results and ranges
Very important to see exactly what has been tested and equally important what hasn't been tested
You are legally entitled to printed copies of your blood test results and ranges.
UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Hyperthyroidism can be due to number of different causes. Important to find out which
Graves' disease diagnosed by testing TSI or TRab antibodies. May also have slightly raised TPO or TG thyroid antibodies
Toxic nodules. Ultrasound scan of thyroid
Hashimoto's (hypothyroid) frequently starts with period of hyperthyroid type results and symptoms. Confirmed by high TPO or high TG thyroid antibodies and/or ultrasound
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. TSI or TRab antibodies for Graves' disease
Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common with Hashimoto's or Graves
An overactive thyroid can leave you feeling anxious and jumpy and possibly even depressed but without posting your test results along with their lab ranges there is no way of others making comments.
I have Graves Disease and when it was active I started on 10mcg carbimazole and after four weeks my blood tests were exactly the same. I got a letter from my endo (who I wasn’t due to see for another two months) telling me to double the dose to 20mcg a day. There was no mention of ‘hammering it’ or anything like that, it was just that 10mcg wasn’t enough to work.
I can’t say I noticed any difference really. Eventually the palpitations stopped which was a relief - often patients are prescribed beta blocker but I have asthma so I couldn’t be given them. I was still quite stressed and up tight.
When I saw the endo for the first time my thyroid had become under active so you will need blood tests to make sure you don’t if you take 20mcg a day. I went from being very overactive to being very underactive in two months.
I was then ready to be treated with block and replace - block thyroid production with carbimazole then replace it with levothyroxine- you’ll need to look that up. That took exactly a year, then one day i was told to stop everything and see what happened. That was in 2013 and so far I’m still in remission.
I did go totally gluten free about four years ago when I developed inflammatory arthritis and I eat a pretty healthy diet - no junk food or fizzy drinks etc - and since then my thyroid antibodies have dropped. I’ve still got a few but they don’t flash up in red now.
You really do need to have everything SlowDragon has suggested tested and make sure your vitamins D and B12 are well up in their ranges as well as your ferritin and folate.
If you are in the U.K. - I’m not sure if you are - then you are legally entitled to have copies of all of your blood tests so get them and post them. If your doctors don’t want to test more than the bare minimum of TSH / T4 then you can order a fingerprick home test and find out that way which is what a lot of us have been reduced to doing.
If it is ‘just’ that your thyroid is overactive I certainly wouldn’t let anyone remove your thyroid until you and your doctors have exhausted every treatment option. That’s just a personal opinion though - I’m not medically qualified.
You are not hyper at the moment. Some people's TSH never rises and really they shouldn't be getting so upset about it. Your pituitary may not be working according to the text book. Your free T4 and free T3 are in range. What you need is TRab or TSI antibodies, and TPO and TG antibodies tested, so you know whether it is Hashis or Graves. I wouldn't want to increase carbi with those results. But I am hypo, so I don't really know. I would be very happy if those were my (hypo) bloods.
I was also worried about side effects when starting on Carbimazole - I must be "high maintenance" too because I share your sickness-phobia!
I was started on 5mg and only ever increased and decreased by 5mg increments, so it's not quite the same as your dose being doubled, but I did experience some of the problems you mention, extreme fatigue, low mood, anxiety. I was relieved that I didn't get any nausea or sickness.
Regarding the fatigue and emotional symptoms I felt (maybe wrongly, but it made some kind of sense to me) that they were probably my body's response firstly to the huge amounts of thyroid hormones sloshing about inside me, and later to the fairly rapid changes as my levels came down. So more a side-effect of the effects of the Carbi rather than of the medicine itself if that makes sense.
I did have a couple of weeks where I felt almost amazing (relative to how bad I had been feeling). This was when I was "in range" and my FT4 and FT3 were in the top half of the range. My TSH was still "undetectable" at this point.
If you're feeling uncertain about doubling your dose maybe you could suggest increasing it by 5mg at first to see how you get on?
Hope you can find a solution that works for you.
• in reply to
Oh, I just saw that you've added your latest results, and it looks as if your T4 and T3 are in range, in which case I'd be asking why an increase is considered necessary. I'd be looking for a decrease in those circumstances.
And goodness I didn’t mean to say anyone with the sick phobia is high maintenance lol! It’s apparently in the top 5 phobias! So we have a lot of company!! What you’re saying makes total sense and I didn’t think of it that way! My bodies response to the thyroid stuff changing rather than the pills!
It's a pretty sensible thing to be phobic about, I reckon - more so than my Mum's phobia about crocodiles (she lives in the UK so is hardly likely to bump into any!).
Have you had a diagnosis of Grave Disease and proved positive for the TSI /TRab antibody?
If so Graves is an autoimmune disease, and it is in your blood, in your DNA.
There is probably some genetic predisposition, maybe a generation away from you, and possibly something has happened in your life to trigger this immune response.
Your thyroid is the victim in all this and not the cause.
It is your immune system attacking your thyroid causing your thyroid to go haywire, overactive and causing you symptoms.
I too have Graves disease but am not in a position to advise regarding treatment options, as I was offered none, except Carbimazole and then thyroid ablation with radioactive iodine, something I would not recommended to anybody.
There are several treatment options that you should be offered and on no account agree to loosing your thyroid until all options have been exhausted. When and only then, surgery is the better of the two options currently available.
Living without a thyroid comes with it's own set of problems and it is somewhat of a simplistic solution - removing the target of the attack, the thyroid, doesn't solve the underlying problem which is one of an autoimmune disease.
The Nhs believe that they can manage hypothyroidism better than they can manage hyperthyroidism, and take no notice of the autoimmune condition as they do not know how to solve the autoimmune component of the condition.
Diet and life style choices may need to looked at in an attempt to reduce the antibodies.
There is a lot to take in, read and reread until it starts to make sense, and it will, trust me.
You might like the following book :-
Graves Disease A Practical Guide by Elaine Moore - this lady has the disease and has dedicated herself to writing and informing other patients as to everything Graves -
there is a very comprehensive website, USA medical protocol, but very informative with an active research and open forum option for all to use.
Thank you! Interesting you should mention generation inheritance conditions as two of my cousins had graves. One during pregnancy which resolved itself with a short treatment and the other causing also had the radioactive iodine. Why would you not recommend?
That’s exactly what the NHS specialist has said! Hypo is easier than hyper to manage and “less dangerous” (heart wise) and that carbimazole cannot be taken long term (even though I’ve taken it longer than recommended already and they now want to up it)
They said in the very beginning that my condition was “likely to be caused by graves” but that my results weren’t presenting this?! I had all the symptoms though?
It took so so long to even be diagnosed with this! They were looking for something else! So it’s been a long long road.
You say " likely to be caused by graves " but results are negative ?
So, you are being treated for an overactive thyroid but it is not Graves Disease.
You are on Carbimazole and there has been a suggestion of thyroid removal.
I really do think you need to check if you have been tested for the Graves antibodies TSI/TRab. and what the result was, as treatment is different depending on the result.
Your results now look to be coming into line but that is probably because you are on the Carbimazole. If this medication suits you I have read of people staying on a small dose for years, and some finding remission from the disease.
There are other medications that can also be tried if Carbimazole doesn't suit you.
Loosing your thyroid has to be the very last option.
It is a major gland responsible for whole body synchronisation, fine tuning your physical, emotional, mental, psychological and spiritual well being.
As we have already established, it's an autoimmune condition that attacks the thyroid.
Graves seems to be poorly understood, affecting approximately a quarter of 1% of the population, so please think about the treatment options and not jump to a quick solution that would suit the medical profession but may not be in your best interests.
Yes those were the exact words used “likely to be caused by graves although tests were negative” but then my GP said overactive thyroid is rarely without graves?! Or is it the same thing? This is why I get confused/frustrated!
They talk to me about removing the thyroid like it’s the easiest thing in the world and the best thing for me!
My question to them was ...if you’re not 100% sure the anxiety etc is caused by the thyroid issues why would I have it removed?? To still feel as bad and be on meds for life?!
It seems to be a first line treatment the way they talk about it! And being on thyroxine forever will be “easier” for me.
Yes, you are right, it is easier for them - but it's not their life, nor their body.
As you have probably started to understand, living without a thyroid is no fun, especially when the Nhs does not acknowledge or understand the autoimmune component of thyroid disease, nor prescribe the necessary hormones to replace those that a fully functioning, working thyroid would produce.
So, in the first instance, you do not have Graves Disease so you have a negative
TSI/TRab diagnosis, but your doctor is treating your symptoms with Cabimazole.
Did an endocrinologist initiate the medication and if so, what was his diagnosis ?
Could you ask for a second opinion as there seems to be some confusion as to your diagnosis and treatment ?
Graves is generally stress and anxiety driven so I fully appreciate this situation is not helping you one little bit.
You mentioned family members having Graves, can you speak to them regarding their experience and treatment ?
One had it during pregnancy and it resolved itself with meds she hasn’t had a reoccurrence. My other cousin had the radioactive iodine treatment for hers which she isn’t thrilled with when I spoke to her.
They said that my TSH is surpressed? And that it is causing overactive thyroid (with symptoms presenting as graves but tests showing it isn’t) it was the specialist endocrine that started me on carbimazole and has played around with it since but the issue with the nhs (as valuable as it is) you see someone new every now and again! So I have 3 different approaches! And everytime I go each one tells me something different!
Consultant 1 - let’s “zap it” with carbimazole a high dose to see if anxiety symptoms resolve then bring it down slowly to see how it reacts but ultimately will need it removed
Consultant 2 - started me on lowest dose and monitors bloods every 4-8 weeks & increases slowly and reduces slowly and LISTENS to how I feel & feels removal is drastic
Consultant 3 - it needs to come out why are you messing around just do it it’s going to happen anyway
And then GP
Have it removed as you are at risk of heart problems/stroke etc
I am very healthy, I eat well, I’m training for a half marathon and weight train 3 times a week. I don’t drink alcohol or smoke. And for a while this was enough to not need meds but 3 years ago they decided they needed my bloods to “do something” so started on carbimazole by scaring me into it basically! And now I am where I am! 2 years of feeling dreadful!
Ok, I don't know, I'm no doctor, just someone who was on the receiving end of a doctor's appointment in 2003 that led to being diagnosed with Graves Disease.
I was 56, seriously exhausted, with insomnia and dry gritty eyes.
I was put on Carbimazole, frightened out of my life, and told I was to have RAI in about 15-18 months time as the medication they had put me on was too dangerous to stay on long term.
I returned work and thought I was sorted and the " job done ".
I can't remember many details, eventually resigning and moving house all within the same time frame of months, but I dutifully turned up and drank the drink, believing it was totally safe.
The leaflet I was given confirmed this statement, the only risk being I might become hypothyroid, but that was ok as they knew how to help me with this !
I was discharged back into primary care and on monotherapy with Levothyroxine.
Had I known then, what I do now, I would not have gone down this exit route.
I believe because of my near pension age I was not considered worth investing too much time in, and so therefore not offered any treatment options except RAI.
If somebody had explained Graves Disease to me and I had explained I had been physically threatened and verbally assaulted in the work place a few months prior to this diagnosis maybe then, I'd have removed myself immediately away from the "threat" and my thyroid might have calmed down and self regulated.
So, you are better placed than I was.
You have this amazing website to pull on, plus your cousins, one of whom is now ok and not on any treatment as her thyroid has now righted itself, and one of whom drank the RAI and isn't " too thrilled " with her outcome.
I think the Nhs has a limited number of time to spend on patients.
You're a name in a time slot and there is a back log of new patients waiting for appointments - I don't remember seeing any endo more than twice, so how are they meant to learn if there is no direct continuity of care.
Or is it simply a holding game. as you say, one endo is cautious, one clearly wants to " nuke " your thyroid and discharge you back into primary care, thereby reducing his work load and the third is sitting on the fence - but towing the company line in presuming you'll be worn down by it all eventually and that killing off your thyroid gets you off the outpatient list and they can all move on.
And they will all move on, reciting dogma to unsuspecting patients, simply unwell and confused and looking for help from the doctors.
I don't doubt there is the genetic predisposition, as you have identified.
The 64million $ question is how to reduce your antibodies, so that when and if this happens again, you will be stronger and able to recognise your triggers and work on ways to reduce the impact. Stress and anxiety seem to exacerbate symptoms so, again, look at your life work balance and possibly diet, especially gluten.
I know you have put in a lot of work here already and am simply amazed at your intention to run a half marathon and exercise as you do.
If your metabolism has been running fast, as often happens with Graves, or maybe too slow as with medication for overactive thyroid, please make sure your ferritin, folate, B12 and vitamin D are at optimum levels to give you the best chance of staying strong during this stressful period.
You might like to take note of the following :
Professor A Toft an eminent endocrinologist wrote an article just over a year ago in which he states :-
I am so concerned about the state of advice on the management of primary hypothyroidism that I am increasingly reluctant to suggest ablative therapy with iodine-131 or surgery in patients with Graves Disease, irrespective of age or number of recurrences of hyperthyroidism.
The full article is one this website somewhere, but am sorry, I don't know how to resurrect it for you :
December 2017 Journal of the Royal College of Physicians Edinburgh.
Thyroid Hormone Replacement - A Counterblast to Guidelines.
Thank you this site already has given me so much to think about and constructive questions to ask! You guys aren’t the first to say they want me off the list so to speak!
My B12 levels are currently too high so I’ve been told to stop my multi vit which is fine.
My Endo has said if my issues were caused by thyroid issues it is doubtful I would be able to do any kind of running so that’s the kind of comment that makes me question why he wants to whip it out then!!
I do work a lot and I do travel a lot for work (I cover from Glasgow to Norwich so can be anywhere any week) however, I do have mostly control over this and I need to balance my life a lot better than I do! Workaholic runs in my family! I’m fortunate I enjoy what I do but doesn’t mean it has to be ALL I do!
I’m sorry you had such a horrible work experience!! I didn’t realise this could impact your thyroid which is also interesting. We were burgled when at home 2 years ago (in the day time!) which was a massive trigger for anxiety & stress etc.
Yes, in Elaine Moore's book she writes that Graves can occur because of a shock to the system like a sudden death or a car accident.
I think we all ask the question, why did this happen to me ?
But before " this happened " one doesn't tend to think about consequences, and just gets on with whatever life throws at any particular time.
Looking back now it makes some sense, and this particular episode was the finale. I was in a state of shock, but stayed calm and tried to carry on, as best I could, going through the grievance process etc. as one does. I was feeling hurt, upset and frightened internally and felt unable to verbalise my anger and carried on in the job, not letting my emotions cloud my work ethic or professionalism.
I was this man's manager, I had employed him months previously, there were no witnesses, he told me he had made sure of that, he gave up undermining my ability and just went for me in a personal attack.
This was the straw that broke the camel's back.
I can acknowledge certain traits and characteristics throughout my life that will have attributed to my diagnosis but have only been able to do this in hindsight.
Yes, you are right, we all need a work / life balance - mine had been missing for a few years owing to family deaths and all that that can bring.
I don't know if I have the TSI/TRab antibody, I didn't know to ask, either way I was "nuked ". I now see no point in getting angry about my treatment, or lack of it, as it doesn't help me get on with my life.
I am now self medicating as the Nhs have refused me a trial of T3 as my TSH is suppressed and I am at risk of the same problems they have quoted to you as reasons to have your thyroid removed ????
Read up, here's a hobby for you, knowledge is power, be empowered and be proactive in your medical treatment and not dependant on the three wise monkeys.
Here endeth the sermon from my sofa - take good care :
They tell me I’m at risk of heart problems/stroke etc if I don’t treat what I have as initially I managed with diet and exercise, but these things scared me into starting carbimazole and now they want to move on to remove as it hasn’t done what they wanted it to!
I would refuse to change anything unless you get a positive test for TRab, showing that you have Graves. They need to treat you, not numbers on a page. They can frighten and threaten, but they cannot force you to do anything
Thank you!!!! People make me think I’m going mad by disagreeing with the “specialists” but I know my body and what they’re telling me doesn’t make sense! I feel a bit more confident to challenge them now
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