Hi!
Hope everyone is well.
I’ve recently been diagnosed with Graves’ disease and am on carbimazole. I feel better now on the meds but I do get a lot of joint pain, mostly in my shoulder blade but also in my wrists/fingers. I get shooting pains around my shoulder too and Muscle twitches in my back and arms.
Is this normal with Graves’ disease and if so, will it stop the longer I’m on the meds?
Many thanks!
Hello T250c
Graves is an auto immune disease and as such, it's in your blood and your DNA.
It is said that there is possibly a genetic predisposition, maybe a generation away from you, and the disease can be triggered by a sudden shock to the system, like a car accident or an unexpected sudden death.
Your own immune system has gone a bit " haywire " and is attacking your body, and an attack on your thyroid can be alarming, confusing, and life threatening.
Your thyroid is the victim of an attack by your own immune system, and the thyroid is a major gland responsible for full body synchronisation, including your mental, physical, emotional, psychological and spiritual wellbeing, your inner central heating system and your metabolism.
Anti thyroid drugs block the production of the thyroid hormones that are causing the majority of the life threatening symptoms, and presume you are now being monitored by the hospital endocrinology department.
In my experience I was given about 15 months on the AT drugs with the end game being Radioactive Iodine, which I deeply regret, but I was given no treatment options, and didn't know enough to question my treatment.
I was diagnosed at 56 and this was some 16 years ago.
I knew nothing, other than what the doctors told me, and I urge you to read up about all things Graves Disease, as it does seem to be a poorly understood and badly managed auto immune disease.
Your metabolism has been running very fast, and now on the AT drugs you feel better, and there is a risk that your metabolism has been " turned down " too far and it's important that you are still able utilise the nutrients from your food.
There are treatment options to managing Graves Disease and you owe it to yourself to understand the implications of all the options you should be offered.
If I could have my time over, I would stay on the AT drugs, and keep my thyroid.
There are some people on this site who are in remission from Graves, others who are on long term AT drugs, others who have had a thyroidectomy and others like myself that were given RAI.
You might like to take a look at the one and only specialist Graves Disease website.
It is run by a lady called Elaine Moore who has the disease and went through RAI back in the 1990's. She found no help or understanding in her Graves journey so wrote a book to help other people who maybe were with similar problems.
To receive any serious consideration from this amazing website, you need to post your blood tests results so people better able than me can give you a more informed answer.
It is very common for your vitamins and minerals to be low, so would suggest you get your ferritin, folate, B12 and vitamin D checked out along with the thyroid TSH, T3 and T4 :
When with these results start another post and you will receive a detailed response.
Can you please ensure that you do actually have Graves Disease and have blood tests confirming either the TSI and or TRab antibodies.
I am with Graves Disease and since RAI treatment in 2005 am now managing lingering symptoms of Graves, thyroid eye disease and hypothyroidism.
I am now self mediating and having to buy my own thyroid hormones as I have been refused a trial of T3 by the NHS and have received no help or understanding with my continuing long term complications of drinking RAI.
Thank you very much! Il have a look on the website .
If doctors see a very low TSH and high Free T4 (and high Free T3 if it was tested) they might jump to the conclusion that the patient has Graves' Disease (GD) without testing to see if they have the antibodies that cause it.
The antibodies found in GD and what they do are described in this paragraph :
Graves’ disease is triggered by a process in the body’s immune system, which normally protects us from foreign invaders such as bacteria and viruses. The immune system destroys foreign invaders with substances called antibodies produced by blood cells known as lymphocytes. Sometimes the immune system can be tricked into making antibodies that cross-react with proteins on our own cells. In many cases these antibodies can cause destruction of those cells. In Graves’ disease these antibodies (called the thyrotropin receptor antibodies (TRAb) or thyroid stimulating immunoglobulins (TSI) do the opposite – they cause the cells to work overtime. The antibodies in Graves’ disease bind to receptors on the surface of thyroid cells and stimulate those cells to overproduce and release thyroid hormones. This results in an overactive thyroid (hyperthyroidism).
Source : thyroid.org/graves-disease/
There is another thyroid problem which could present with blood test results similar to those I described earlier, and that is in early-stage Hashimoto's Thyroiditis, (Hashi's) but the antibodies present in the body are not the ones found in GD.
There have been quite a few cases on this forum where people have been told that they have GD, but they haven't had the appropriate antibody tests done, and they most likely had/have Hashi's instead.
The two diseases - GD and Hashi's - do not take the same course and they do not have the same future. Confusing them means that the patient might end up being inappropriately treated.
GD never goes away and the cells in the thyroid are not destroyed. If patients are put on anti-thyroid (AT) drugs they may eventually go into remission and can come off all thyroid-related drugs. Relapses can and do happen. Some people stay on AT drugs for years and live normal lives. Sadly, doctors don't like patients who don't go away, so they tell patients they need their thyroid removed or partially destroyed/killed off with radioactive iodine (RAI). In doing so they make the patient permanently hypothyroid. And as you can probably tell by reading posts in this forum some hypothyroid patients don't get the treatment they need or are kept under-medicated and they are treated very poorly.
There are some patients who have GD, have a thyroidectomy or RAI and do very well, and are happy with their treatment including their subsequent hypothyroid treatment. It isn't gloom and doom for everyone with GD. The same is true of people with Hashi's and hypothyroidism. The people posting on this forum are the ones who took years and years to get diagnosed, who can't tolerate the standard treatments, are left under-medicated or wrongly-medicated, who were possibly misdiagnosed, and who never feel well.
Hashi's does eventually go away (although it could take decades). The thyroid is slowly destroyed over many years. As the destruction goes on the patient's thyroid is less and less able to produce sufficient thyroid hormone for the patient's needs and they become permanently hypothyroid.
In GD, as the paragraph I quoted above says, it is the thyroid that over-produces thyroid hormones.
Hashi's is different. The high levels of thyroid hormone are produced by the immune system damaging/killing off thyroid cells, and when this happens the damaged cells release their load of thyroid hormones into the blood stream, which can be detected by blood tests. But these killed-off cells can never produce thyroid hormones again, which is why anyone with Hashi's always ends up hypothyroid eventually.
To summarise : It is essential to be absolutely sure which cause of hyperthyroidism you have. (I have given only two, and the Hashi's is temporary. There are other causes of being hyperthyroid.) Having the correct diagnosis is absolutely essential to being given the appropriate options for treatment.
Elaine Moore's website : elaine-moore.com/
Causes of hyperthyroidism : elaine-moore.com/Articles/G...
I wish I knew of this forum when I was first (mis)diagnosed. I had a suppressed TSH and high FT3 and FT4 levels. I was put on anti-thyroid medication because the doctors thought I had GD. My endo even told me point blank that I had GD, so I went out and purchased Elaine Moore's Graves Disease, A Practical Guide. I still have this book 
Regarding your joint pain, it is common for people with thyroid disease of any kind to be short of nutrients.
The following are often found to be low :
Vitamin B12
Folate
Vitamin D
Iron
Ferritin (iron stores)
Optimising the levels of the above nutrients can make lots of symptoms go away, including joint pain. They must be tested before taking supplements. This is for three reasons. Firstly, supplementing something you don't need could create new symptoms and problems you really don't want, secondly, its a waste of money, and thirdly, by knowing how low your levels of nutrients are you can adjust your dose of supplement (and your diet) accordingly.
Please note that multivitamins are NOT recommended.
Thank you for that. I’m have another appointment in 2 weeks so will discuss with my doctor then.
Thanks again!
Does your Doctor know about Graves' disease? I am just asking because my Endocrinologist over-dosed me on PTU and my TSH was 9 and I felt dreadful. I discharged myself from his clinic when he offered me counseling for feeling so ill. Not a lot of Doctors know how to treat the disease and a lot them want you to either destroy (RAI) your thyroid or remove it. I was advised to do that 10 years ago but refused because my thyroid is not cancerous or too big. Over the years I have come across a lot of ladies who went down this route and regret it because the NHS do not know how to adequately treat someone without a thyroid. There are some who do well on Levothyroxine alone but you rarely see them on sites like these. I am on my second remission now btw.
Hi,
Do you recall feeling joint pain prior to taking carbimazole? I remember feeling extreme joint pain when I was put on high dose methimazole, another type of anti-thyroid medication. I didn't get joint pain before taking the drug, so I thought the pain was one of the side effects of the drug. Months later, I found out the joint pain was due to the fact I had gone hypo, and that I didn't have GD, but was in the hyperthyroid stage of Hashimoto's.
Anyway, I second what HumanBean says above. Moral of the story is to be sure you get your antibodies tested to rule out Hashimoto's.
I have been recently diagnosed with Grave's disease and Psoriasis. I am currently not taking my medication as I feel unsure and nervous about the whole situation. I frequently get pain in my fingers/shoulders as you've described. I always assumed it was the start of psoriatic arthritis. Maybe it was Grave's? I don't know but I find it promising to know I'm not the only one with that symptom .
Hi T250c
How are you doing now?
I would be interested to know the results were that confirmed Graves please
Thanks
Alps
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