Possible Graves’ disease symptoms?

[Marlie230]

Hello

I was diagnosed with Graves’ disease last year and have been on the carbimazole treatment. Currently on 5mg once a day.

I was wondering if anyone else gets the symptoms I do. My doctor is never interested so I have no help there.

These seem to mostly be Pre medication And are ongoing -

1. Dizziness. Feels like eyes are trying to roll back in head but aren’t. Lasts 10-30 seconds. Can go weeks with nothing then have a few episodes.

2. Headaches. Started 2years before diagnosis. irritable, can’t concentrate. Can’t think. Ibup does work but at one time I was taking them all day every day.

3. Low pain threshold. This just seemed to suddenly drop and even a poke hurt.

4. Stomach pains. Mainly in the morning, usually wake up in foetal position Because of it and they won’t go until I get up.

5. My periods havnt yet returned to normal even though my thyroid levels are controlled. They are still only lasting 1 day. Rather than 5 as they used to.

6. Fatigue - although I think this goes without saying. Some days I feel I can’t move even though I probably actually can. And I get awful anxiety about being ‘lazy’ and weak.

It would be interesting to see if these are things that can be connected to Graves’ disease.

I think I am still feeling a little overwhelmed and scared by the whole thing. Although also relieved I wasn’t just imagining things!

Thanks xx

[pennyannie]

Hello Marlie

Welcome to the forum.

Graves is an autoimmune disease that can wax and wain for many years, and can be triggered by a sudden shock to the system, like a car accident or sudden death of someone close to you, and is said to be stress and anxiety driven.

When Graves is triggered, your immune system attacks the thyroid, the symptoms experienced can be diverse, with some life threatening, whilst others might be simply a bit ' odd ', but serious enough to necessitate a visit to the doctor.

The thyroid is a major gland responsible for full body synchronisation including your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.

I presume your doctor ran blood tests and you were proved positive for carrying the TSI/TRab ( thyroid stimulating and or thyroid blocking ) Graves antibody ?

Carbimazole is an anti thyroid drug that works by blocking your own thyroid hormone production. The NHS general prescribe AT drugs for about 15 / 18 months in the hope that during this time your thyroid falls back into the NHS range, and you ride out this phase of this attack on your thyroid, and find remission.

The other treatment options that might be discussed are the permanent actions of either slowly burning your thyroid out in situ with Radioactive Iodine or by your having a thyroidectomy and having your thyroid surgically removed.

I believe both these actions are drastic measures and would, if I could have my time over again, wish to stay on a low dose AT drug long term, if remission wasn't possible.

Since you are now on a low dose of Carbimazole I presume you are ' in the range ' but your dose of the AT drug may still need fine tuning as you say you are still with symptoms - you mention many symptoms, and would suggest a referral to a specialist regarding your eyes.

Since your metabolism has been running too fast and now possibly running too slow, your ability to breakdown your food, and benefit from the full nutrients may have become compromised so it's also important that you maintain your ferritin, folate, B12 and vitamin D at optimal levels in order to keep your core strength strong and solid.

So it might be wise to ask your doctor to also run these blood tests, and again, if you post these, with the ranges, you will be advised if anything needs supplementing.

It does appear that Graves is a poorly understood and badly treated autoimmune disease and for further background reading you might like to look at the Elaine Moore Graves Disease Foundation website. This lady has the disease and went through the RAI thyroid ablation in the late 1990's and finding no help with her continued symptoms, and being a medical technician started her own research and then wrote a book. Elaine is now a leading authority on all things Graves and her website offers an open forum much like this excellent site where you can ask questions of the community.

It is Stateside so there are some differences in medical terminology but her website is complete and offers help in understanding the autoimmune component of this disease, to which the NHS and medical establishment pay little attention.

I too have Graves, diagnosed in 2003 and had RAI thyroid ablation in 2005 - a treatment I deeply regret. I now manage, lingering Graves symptoms, thyroid eye disease and hypothyroidism and am self medicating as I am unable to access the full thyroid hormone replacement on the NHS.

[Fruityflapjack]

Hello Marlie

Like you I also have Graves.

I totally understand what you mean regarding point 1! For me it only seems to happen when I'm feeling particularly tired and when I'm sitting watching TV. I have TED and it makes it harder for me to focus, especially in the evenings. I agree with penny annie, it's worth asking your endocrinologist for a referral so they can check your eyes.

[Parsley23]

I personally never had most of those symptoms but there was always stuff I was sure was due to the graves that the doctors dismissed- you know your body best! Also, it’s been a while since my RAI but 5 seems like a pretty low dose!