When I first became ill I found this site really useful in providing information regarding treatment options and people's experiences so I thought I would now share mine for anyone who has been newly diagnosed and wonders what awaits them.
I became ill from nowhere over the course of only a few days. Started to feel just slightly 'off' mid-week, a bit lightheaded, but was able to continue working. By the weekend I could barely get out of bed. I have had proper flu once in my life and that is the closest thing to this that I have experienced. Really dizzy and light-headed, aching, shaky, zero energy and prone to bursting into tears for no apparent reason other than how horrible I was feeling.
I went to the GP on the Monday and they did a broad spectrum blood test which came back the next day showing I had a severely over-active thyroid. I was signed off work for 2 weeks, and prescribed carbimazole and a beta-blocker. After about a week I started to feel better and by the end of the second week I felt almost back to normal and was ready to go back to work.
I was referred to the hospital but my appointment wasn't until about 3 months so in the meantime I stayed on the medication and had regular blood tests. Having read up about treatment options (including on this site) I felt that I would like to try the 'titration' method, which basically means that they gradually reduce the amount of anti-thyroid medication (in my case carbimazole) until you hopefully get to the point where you are on a really small amount or perhaps no longer need it at all. I was responding well to the carbimazole and felt well on it and it made sense to reduce the amount of medication if possible rather than go down the other route, known as 'block and replace', where you stay on a high level of anti-thyroid but then in addition take a thyroid replacement medication, such as levothyroxine, to stop your thyroid levels going too low.
Unfortunately when I got to the stage that my levels had fallen so much that my thyroid was becoming under-active, a couple of months later, my GP stated that I had to go on 'block and replace, despite my objections and put me on levothyroxine alongside the carbimazole. Within a few days I started to feel bad. Possibly my sub-conscious was playing a part in this as I was really upset about being on that medication against my will, but how I felt was real. Lacking in energy again, quite emotional, and just never really feeling quite right. I managed to struggle through work but would often just have to 'crash' in the evening and at the weekends. If I managed to go out somewhere one day I would need to rest at home the following day to recover. This continued until I finally got to the hospital to see the endocrinologist. He did a different blood test and was able to establish it as Graves Disease. However he didn't see any reason why I needed to continue with the levothyroxine so I stopped that immediately and reduced the amount of carbimazole that I was taking. After a few weeks I started to feel a bit better and I continued taking only carbimazole for the next approximately 9 months, gradually reducing the amount every couple of months or so. Generally I felt OK like this but I was far from my usual well self. I couldn't cope at all with any amount of over-tiredness and I succumbed to a few minor coughs and colds which I usually would have been able to fight off or at least cope with. Gradually I found I was having more good than bad days but it felt like quite slow process.
After a year on carbimazole my endocrinologist said I could stop taking it all together, whilst continuing to have regular blood tests, and it was from this point that I really started to feel like I was getting back to normal. Not all at once, but I seemed to improve quicker, and by about six months after that I was back to feeling like my old self again. After a final blood test approximately 2 years after I first became ill, the Graves Disease was declared to be 'in remission', and now another year on again, I continue to feel completely well.
I realise that for many people the journey is not as straightforward and I have a great deal of sympathy for all of you that continue to suffer year after year. I am also aware that this is not necessarily the end of my Graves journey. I believe the statistics state that around 50% of people will have a relapse at some stage and previous treatments are not always as successful. But for now I remain well and am doing my best to look after myself with a reasonably healthy diet and regular exercise. Everyone's experience will be different, some better and some worse, but this was mine and I just felt I wanted to share it as when I was looking for answers and information I was grateful for the variety of experiences that had been shared by others.
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Kexy
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Excellent outcome! I am happy to hear you have subdued the statistics and wish you all the best! Mind your lifestyle and stress levels.
How was your pre-Graves life, in terms of health and lifestyle? Do you think there was a connection there?
I would have tried to follow the same path that you took, but in one hand the levels of antibodies I had on the debuted were unlikely to point to a long term remission, and, on the other hand, the Graves ophtalmopathy occured early into the disease course and therefore I had to admit defeat and head towards TT.
True, nothing is the same after all this mess, but, yet again, when and where everything stays the same....life can be good even under bad circumstances and my life is good, despite all past, present and surely future troubles that relate directly or indirectly to this situation.
Thank you Caesard. I was fairly healthy and active pre-Graves and wasn't under any stress so I don't think there was any obvious 'trigger'. But I am just that bit more careful now to maintain a healthy stress-free (as far as possible) lifestyle to give myself the best chance of remaining well.
Hi Tromashka, my lifestyle was fairly healthy and active, and there were no obvious triggers before I became ill. For the first few months I had a blood test every month. Once things seemed more stable it reduced to every 3 months, then every 6, and it is now suggested that I just have test once a year. I only actually saw my endocrinologist twice, but each time I had a blood test the endocrinology team would get the results and then write to me and my GP to advise any changes required to my medication levels. They also provided contact details so that I could get hold of them if I had any queries or issues. I know not everyone has such a positive experience but once I was referred to the hospital I was very pleased with the level of care I received.
Thank you for sharing your story. My advice is to try to lead a balanced, healthy life and keeps stress to a minimum. I am 66. I had a sub-total thyroidectomy when I was 27, and lead a reasonably healthy life for the next 21 years.
I’ve always pushed myself, probably beyond my limits, believed in the power of the mind, and that worked well for a while . Then one day, the body took control.
I spent several years feeling unwell, visiting medical and alternative practitioners, and no one could find anything wrong with me.
Bloods were always normal.
I was eventually diagnosed again with Graves, and went through 2 years of Carbimazole treatment, and was told i was euthyroid. That lasted about 18 months, until a practitioner specialising in thyroid conditions told me I was underactive and treated me with thyroid extract.
That appeared to help for a few years, although, looking back, I think I was over medicated. I really don’t recall the last time I felt fantastic. Probably 18 years.
I just treated it as the “new normal”.
Recently I experienced my first serious heart irregularities and consulted an endocrinologist. We agreed to change my meds, starting on Levothyroxine plus a T3 med.
I am now a total mess, dealing with almost every Graves symptom. I have been back on Carbimazole for 2 days and am and taking each day as it comes.
In the meantime I’m learning as much as I can, taking supplements that don’t upset my condition, and sadly taking it easier than I’m used to.
I’ve been told I’ve had too many relapses and that I am looking at surgery. I don’t know if I will feel better after surgery???
It's just another new normal, after the surgery. The truth is you never know what and how much you will have to deal with after getting to this point, but the one thing you cannot do is to regret having it done or second guessing that decision.
No, I'm simply stating that you may never know in advance how much better it will be after the TT. For example, in my case, i have discovered after the surgery that I don't do very well on levothyroxine alone and took me a few years to find a better fix than the standard one.
Graves is an autoimmune disease and as such it's for life, and in your blood and DNA and will probably wax and wane throughout your life.
Graves is said to be stress and anxiety driven and something triggered your immune system to attack your thyroid and when Graves attacks the thyroid the symptoms are said to be life threatening because the thyroid is a major gland, the body's engine, and I don't know of any car that runs well, or anywhere, if it hasn't an engine.
Living without a thyroid and taking thyroid hormone replacement can be a challenge and if also with Graves Disease the situation can be compounded as it seems to me, in my experience, neither thyroid not Graves are well understood in primary care.
The thyroid is the victim in all this and not the cause :
The cause is your immune system mistakenly attacking your body.
Curently there is little knowledge in the NHS mainstream about this AI disease, they can't medicate for this AI disease so think that by removing the target of the attack they have solved the problem.
All these invasive, drastic interventions simply switch the patient from someone needing hospital maintenance and an AT drug to someone off the O/P waiting list and back into the doctor's surgery with primary hypothyroidism and an additional health issue, which many doctors in primary care are ill prepared for.
You might like to dip into the Elaine Moore Graves Disease Foundation website as it's where I started off some 8 years post RAI thyroid ablation for Graves and very unwell. I found no answers in the medical mainstream and referred to as a conundrum, and thought, since I was then housebound, " Maybe that Graves has come back again " only to read it never went away as it is an autoimmune disease that I have to learn to live with and alongside.
Elaine also has Graves and finding no help nor understanding with her continued ill health after RAI at the end of the 1990s started researching this poorly understood and badly treated AI disease herself.
She has written extensively on Graves and now a leading figure in the research of the AI component of the disease which mainstream medical haven't answers.
There is nothing on your profile page so presume your thyroid has regrown ?
If you wish to stay on the AT medication you can - the is no quota of AI attacks you are allowed and then you have to have your throat slit open or drink down a toxic substance - please do a bit more research and I know we can feel very much alone in all this stuff.
I'm with Graves diagnosed in 2003 at age 56 and was given RAI in 2005 - I was well on the AT drugs and continued to work - in primary care I was only ever offered T4 - Levothyroxine and anti depressants - I was denied both a trial of T3 and Natural Desiccated Thyroid and around 4 years ago I started my own jouney back to better health after reading a couple of books and Thyroid uk - the charity who support this amazing forum where you can learn so much more regarding optimal thyroid hormone replacement levels.
I am now so much better in myself, and have my life back.
I take the appropriate blood tests privately, yearly, for someone living without a thyroid gland.. I adjust my medication to improve my health rather than fit into the score card type setup I found in primary care with a computer telling me I was ok when plainly I was not.
Sorry - I don't understand the question - I have never taken HRT ;
I am self medicating with full spectrum thyroid hormone replacement - Natural Desiccated Thyroid which contains all the same known hormones as that of the human thyroid gland.
True, it's confusing, as the HRT term (hormone replacement therapy) is usually used in relation to menopausal treatment. I was talking about thyroid hormone replacement and NDT is the one option I haven't tried, due to unavailability in my country.
I was curious what and how much do you take and what are the criteria to adjust the dosage. I am currently on a t4/t3 combo using a 2:1 ratio but I'm not happy with it and probably will go down towards a more traditional 4:1 ratio
The NDT I use contains 9 mcg T3 + 38 mcg T4 per grain. so 1/4 ratio give or take :
You take as much as you need to relief of symptoms and do not dose to be in ranges designed to be used with synthetic thyroid hormon replacement.
My blood tests results now show a TSH at 0.01 - a T4 at around 25% and a T3 at around 90% through the range : I take 1 + 1/2 grains and am still a little hypo, but with minimal symptoms that i can live with.
In fact it is as though my T3 and T4 results have swopped % through the ranges compared to when iwas on T4 only.
I do need to mintain ferritin, folate, B12 and vitami D at optimal levels and I do also supplement adrenal glandular as the RAI has caused these glands to be damaged.
There is no quick fix, its a slow build, first repairing your body, and then reading and understanding how you may be able to do this yourself for yourelf when mainstream medical can't help you.
You may find a route other than mainstream medical - natural, holistic, intergrated practioners, and read some osteopaths are sympathetic and supportive of more natural medicatiobs.
NDT is pig thyroid dried and ground down into tablets referred to as grains and was used successfully for over 100 years prior to the science of blood tests, guidelines and ranges.
Thank you sooo much for your comprehensive reply. I am in Australia and about to hit the road for a 4 day getaway. I will reply further over the weekend.
Hi Karele, I am sorry to hear you are having a hard time. Obviously I cannot comment on the surgery but you seem to have already had some good advice from those with more experience. I hope you manage to make a decision you are happy with and have a good outcome.
I too was diagnosed with Graves Disease and was determined to keep my Thyroid, though every Doctor and Endocrinologist I’ve spoken to has wanted me to have it removed .
Knowledge and a determination and of course being on this wonderful website , has kept me well , as well as a maintenance programme of daily vitamins, minerals and nutrients .
I feel my life has become my own again, and that’s all I’ve ever wanted since becoming very ill with Graves Disease.
You’re a ⭐️ for coming back and sharing your story to give other sufferers hope .
Thank you Madge. I am very thankful to everyone who has posted on this forum as in the early days I didn't really know what I was dealing with and the official health websites only seem to give a very simplified version of the illness and treatment options. I'm glad you are well now and have your life back again!Take care.
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