So today was my first appointment with the endocrine and it’s definitely graves I have, I’m currently off work sick with it and my sick note expires this Thursday, I don’t feel 100% better just now to go back but I’m confused to what normal feels like, I still get rapid heartbeat, sweats , and fatigue. Im a bus driver so I need to consider myself fit enough to be back out on the road.had anyone got advice on what I should do??
Also been sent away with leaflets about radio iodine or thyroid surgery?? What’s the better?
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Lauren85
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I am so sorry to hear of your diagnosis and that you are feeling ill. I have Graves too and had a TT 4 months ago. You will need some time off to get to feeling better. Are you on carbimazole? What dose? Do you have a goiter? Do you have nodules?
It is way too soon to think about RAI or surgery. Can you post your blood work including antibody results? Have you had an ultrasound? Have you had a FNA biopsy? Sorry for all the questions, but in order to give good advice, we will need some information.
There are some great folks here who are good with bloodwork. If you have any scan/biopsy results, post them and I can try to help or someone else will try to help.
I have goiter but it’s not destructing anything like I can swallow and breath ok, I was on 40mg Carbimazole, now Iv to take 20mg for another 5 weeks then to go back and see how my levels are, this is the second time this disease has come back, I originally got diagnosed with over active in 2017 it went away and now may 2019 it’s back and now have graves, I am seeing doc tomorrow so il ask for a print out of my results, I’m just confused about work and what to do
Thanks for the information. The good news is that your goiter is not obstructing anything. The other good news is that you have been in remission once already - and you may be able to go into remission again with the carbimazole.
Post your results when you get them - you will get good help here.
As far as work goes, from what you say in your post, you are not really ready to go back. If it were me, I would take some more time off if ot is possible to see if I felt better before I took on the stress of the job.
The primary trigger for Graves is stress. If you can have some time to get your body stable, you may have a better chance of feeling better and going back to work.
1) Make sure your Graves diagnosis has been confirmed via a TRAb or TSI antibodies test.
2) Retest your TRAb level before you ever try for remission again. A high TRAb level would mean a high likelihood of failure. Also, if you are experiencing symptoms, regardless if blood test levels are in range, it would be unwise to try for remission.
3) Continuous carbimazole therapy will bring down antibodies level.
I would double check with your GP before you go back to work, it's not worth the risk of you are still not feeling right. I've been on Carbimazole for 2 .5 yrs now and I have no idea what normal used to be like despite being better than I was. I would carry on with medication if it suits you and not be pushed into RAI or surgery. I'm not qualified in anyway but have done a lot of reading online and this forum. When were you diagnosed? It might be early days yet to be feeling better it can take a while for the levels and antibodies to become normal. Good luck
Thanks for reply, I was first diagnosed jan 2017, I’m a bus driver so works difficult at the minute. Iv been signed off today for another 2 weeks so hopefully don’t feel as tired then.
Ah ok I was diagnosed March 17 😊. Glad you got sorted out hopefully you will feel better in the next 2 weeks. Just remember if you need to rest then do so, all the jobs and housework will still be there tomorrow 😂
Graves is an autoimmune disease and as such, it's for life. It's in your blood and DNA.
There is probably some genetic predisposition and I read Graves can be triggered by a sudden shock to the system, like a car accident or an unexpected death.
I think it's when the Graves attacks the thyroid that the symptoms become difficult and said to be life threatening because the thyroid is such a major gland, responsible for full body synchronisation including our mental, physical, emotional, psychological and spiritual wellbeing.
The NHS believe that they can manage hypothyroidism better than they can manage hyperthyroidism. To manage hyperthyroidism takes time and skill on the part of the endocrinologist, and often a time barrier seems to be put in place at around 15 months, at which time, if the endo hasn't succeeded in medicating you well, it's suggested that they whip out the offending thyroid gland through surgery, or suggest you drink RAI - a toxic substance that burns out the thyroid in situ, and is known to cause thyroid eye disease in some patients, and is also absorbed by other internal glands and organs.
If it comes to this final serious decision, please do not consider RAI. It's a 20 minute out patient appointment and a fast discharge back out into primary care. It is the hospitals treatment of choice because it is the cheapest option, but this may not necessarily be in your best interests.
Currently the NHS doesn't know how to control the autoimmune component of this disease and seem to believe that by removing the target of an autoimmune attack, the thyroid, they have removed the problem.
The thyroid is the victim in all this and not the cause. The cause is one of your immune system attacking your body.
Living without a thyroid comes with it's own set of problems especially when unable to access the full thyroid hormone replacements on the NHS.
I think it might be useful for you to read up about Graves Disease and suggest that you take a look at the Elaine Moore website. This lady has the disease and found no help when she was going through RAI treatment in the late 1990's and so wrote a book to help other Graves Disease patients. She has now gone on to manage and run a very well respected and researched website in the States. It is free to use and is all things Graves for Graves patients, there are open forums and platforms very much like this amazing website.
There is a section on alternative treatment options, and great detail is given to autoimmune conditions, self management, stress, anxiety, diet and life style choices and the possible changes one needs to make to manage the disease long term.
You might like also to consider the following paper written by Professor Toft, the eminent endocrinologist. The full article is on this website and within the text he states that he is
" so concerned about the state of advice on the management of primary hypothyroidism that he is increasingly reluctant to suggest ablative therapy with iodine 1-31 or surgery in patients with Graves disease irrespective of age or the number of recurrences of hyperthyroidism ".
December 2017 - Journal of the Royal College of Physicians of Edinburgh -
I'm with Graves Disease post RAI in 2005 and now with Graves, thyroid eye disease and hypothyroidism and am now self medicating with NDT having found no help within the NHS system.
Well I was told the medication was very dangerous by the Nhs, but then I wasn't told about the possibility of thyroid eye disease or the risks attached to drinking RAI so I think it might be hard to find an unbiased opinion on all of this, from within the NHS.
I'm reading of people on here staying on medication for years, so I think you need to read up as much as humanly possible, and I fully appreciate when not well, reading, and retaining information is very difficult.
I think that since Prof. Toft has now come out with his statement, sorry, forgot to write the title of the article :- Thyroid Hormone Replacement - A Counterblast to Guidelines - it says it all - as far as I am concerned.
There are a couple of people on here who are on long term anti thyroid medication, hopefully they will join in at some stage.
What you need to try and understand is what triggers your immune system to go on the attack - there is one poster who has reduced the antibodies, another who maintains that remission is not possible unless your antibodies are low. I have to confess, I need to understand this area myself, having been " nuked " I've been concentrating more on the aftermath of the treatment rather than the run up which is where you are now.
Maybe another post asking about successful stories of remission from Graves and or, long term anti thyroid medication dosing. ?
Thank you penny for championing Elaine Moore's website!!!! Every I ever learnt was starting from Elaine!! I have that success story you're looking for thanks entirely to Elaine Moore!!
I had graves in 2006 and it flared up again in 2015. The NHS said it has to be RAI or surgery, they said Remission on carb was impossible. I said bullshit!!! I insisted on taking the lowest dose possible and followed Elaine's instructions to keep my ft4 as high within the range as possible to reduce antibodies. I was on meds for 2 years and then started adding plant sterols for my immune system, almost immediately my need for meds reduced and 9 months later I was in Remission. I have maintained that Remission for a year since then despite having a very stressful career.
I would highly recommend you going to Elaine Moore's website and being your own advocate on the graves journey as the NHS means well but.......
In other news check out apitope as they are very close to a cure, so hold out n holdonto your thyroid!!!!!
My first symptoms before even being diagnosed with Graves Disease were dry, gritty eyes, insomnia, heat intolerance and exhaustion.
RAI treatment for Graves Disease is known to cause thyroid eye disease in some people, and with hindsight, I shouldn't have been considered for this treatment.
So, in fully blown thyroid eye disease , the eyes swell up and protrude out, the eyes can be red. sore and inflamed, and the surrounding area swollen and puffy with some lid retraction. In severe cases the patient has trouble closing their eyes because of the eyes bulge out of the socket.
Thankfully I didn't suffer to this extreme but can't underestimate the psychological impact of this potential life long disfigurement.
I had to stop wearing contact lenses, and for a good few years " hid behind " glasses, and my issues were not consider " bad enough " for decompression eye surgery.
I have now also read that should patients be destined for RAI there are other drugs suggested to be taken at that point time to offset the possibility of the eye swelling.
I wasn't offered anything back in 2005 and simply trusted that what I was told was the truth, that RAI was perfectly safe, and that I would be better after treatment.
I became very unwell about 5 years ago with some of the consequences experienced after drinking RAI - it's a drink, it goes through the whole body, it's quick, it doesn't leave a visible scar, but can cause serious issues internally and is known to be taken up by other glands and organs, though you won't find these details on the NHS website.
Surgery is " cleaner and more concise " it's out, it's gone and you start from scratch with thyroid hormone replacements. With RAI your thyroid is burnt to render it inactive, but it's still in situ and possible still spurting out, bits and pieces, who knows ?
I've a more detailed history on my profile page, I'm trying to move on and not think too much about how my life has had to change these past few years.
I wanted to let you know that one of my endo’s patients has had someone on Tapazole for 11 years - and they are doing well. If you check the posts for fruitandnutcase, she is in remission from Graves successfully and has good information. pennyannie has also given you some good info below. Wishing you well.
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