Graves

[renshxela]

Hello,

I’m new to the group and have recently been diagnosed by my gp with Graves’ disease. Can I have some general advice about diet/ lifestyle changes I can make to help ease it please I’m on beta blockers and carbimazole 5mg 4x a day.

Thank you

[SeasideSusie Remembering]

Hi renshxela, welcome to the forum.

Was your Graves disease diagnosed by positive antibody results for TSI (Thyroid-Stimulating Immunoglobulin) or TRAb (TSH-receptor antibody)? This is the only way Graves can be confirmed and I believe these tests are only done at hospital, not at primary level.

Do you have your test results which this diagnosis was based on - results for TSH, FT4, FT3, Thyroid antibodies? If so can you please post them, along with their reference ranges. If you don't have them, just ask the receptionist for a print out, we are legally entitled to our results here in the UK, without charge and we don't have to explain why we want them.

Many GPs wrongly diagnose Graves disease purely on TSH/FT4 results when, in fact, it can be Hashimoto's (autoimmune thyroiditis) which is where the immune system attacks and gradually destroys the thyroid leading to hypothyroidism. Hashi's often starts with a "hyper" phase which causes doctors to think it's Graves. Many members here have been wrong diagnosed this way and started on Carbimazole which is entirely the wrong medication if it's Hashi's.

Hashi's is diagnosed with postive antibodies for TPO (Thyroid Peroxidase) and/or Tg (Thyroglobulin).

[asiatic]

My advice would be start keeping a diary with blood results/dose / how you feel as you will probably have a lot of changes and it will be a useful reference point. Make sure you really do have a diagnosis of Graves. This means have you had TSI or TRAB measured. Watch out for the Carbimazole making you hypothyroid which can cause TED.

Start reading all you can. Don't assume your GP will know very much about Graves and your Endo may be a diabetes expert but know little about Autoimmune thyroid disease. You will probably be advised by your doctor to have a thyroidectomy or Radioactive ablation and that staying on Carbimazole is not an option. It is. Read all you can and go with your own instincts of what is right for you. Keep asking questions on this forum where you will get good advice.

[pennyannie]

Hello Renshxela

It is essential that you get a blood test proving positive for the Graves antibody.

You might like to take a look at the Elaine Moore Graves Disease Foundation website.

This lady is a medical researcher, and was diagnosed with Graves back in the 1990's.

She went through RAI thyroid ablation and found little help with her health issues so wrote a book to help others who might be in the same situation. She now runs a very well respected Stateside website with an open forum much like this amazing website, open to everybody to use, world wide. There are numerous sections, including diet and life style choices as well as holistic options and alternative treatments.

Graves is an auto immune disease that can be triggered by a sudden shock to the system, like a car accident or the death of somebody close to you, and there is probably a genetic predisposition maybe a generation away from you, with a relation with a thyroid health condition.

Your body clock isn't automatically turning off, you maybe were feeling overtired, over heating, over eating, though loosing weight, anxious, nervous and exhausted.

The Carbimazole is an anti thyroid drug that blocks your own production of thyroid hormones and if the dose is working well for you I hope you have been able to relax, sleep, and be more like ' you ' again.

There is a lot to read and understand and generally the NHS give you about a 15 month window on the AT drugs and I presume you have referred to endocrinology where they will explain what treatment methods they can offer you. The NHS do not know how to control the autoimmune aspect of this disease, so tend to just treat the symptoms.

Hopefully you will find some relief now you are on the AT drug, but you must ensure, that this diagnosis of Graves is confirmed by a positive blood test for the relevant antibodies as already detailed.

I'm with Graves diagnosed in 2003 and treated with RAI thyroid ablation in 2005 - a treatment I deeply regret.

You are much better placed in 2020 to do your research, ask any questions, and be prepared to take an active role in your treatment options and care.

[renshxela]

Thank you everyone for your replies, I will get access to an online forum to view my blood results and see which antibodies they tested. I haven’t been able to see an endocrinologist due to the current climate so have just had to limbo with my gp, but they did say they’d test me for Graves’ disease, then rang me and told me I had it but when I can access my results I will post them and see what they mean

Thank you for the suggested website I will start researching this ASAP! I do feel it was trigged my an extremely stressful situation I was in last September as it is in this period where I have had the majority of symptoms but the carbimazole and beta blockers have worked really well I feel a lot better.

But thank you all again! I feel a lot more confident into researching the matter

[Fruitandnutcase]

Definitely keep a diary with all your blood test results, medicines you are taking how you are feeling etc. That will be useful for then you get to see an endocrinologist.

I also wrote down any questions I wanted to ask otherwise I would forget when I saw the endo, and kept any interesting articles about Graves I found.

You need to have your vitamin D, B12, ferritin and folate well up in their ranges to help your thyroid. I couldn’t take beta blockers because I have asthma so I had to wait for the carbimazole to kick in which took a while.

After that I was treated with block and replace - 40mcg of carbimazole a day plus an increasing amount of levothyroxine until one day exactly a year after I started treatment when my blood test results were where they should have been I stopped everything. That was in 2013 and I’ve been in remission since then.

Don’t let anyone try to push you into making hasty decisions - I was always being told that should my block and replace treatment fail then I could have radioactive iodine - no way did I want that, so the info I collected was mostly about people who had stayed on block and replace for long periods at a time in case I had to put up a fight if I relapsed.

I also went totally gluten free and I think it was being GF that helped reduce my thyroid antibodies - they may have reduced anyway but I think it was being GF that did it. So I’m still GF.

So, keep a diary, keep following this website, ask questions read as much as you can about your condition and don’t let your doctors or endocrinologists try to push you into doing anything you aren’t keen on. Take an active part in your treatment - don’t just sit back and let your doctors do exactly what they want - it’s your body - ask questions etc.

I don’t know how you are feeling but at one point I didn’t think I would ever feel normal again but I do.e

[Sophitje]

Hello, I also have Graves and was treated successfully with carbimazole from 2007 until 2010 on the block and replace regimen. I then went into remission for almost then years but relapsed early 2019. I got back on carbimazole but unfortunately that time I had a very adverse reaction to the drug (agranulocytosis which your gp will have warned you about, I'm sure) so they could no treat me with anti thyroid drug any longer. I opted for the full thyroidectomy; it was either that or RAI which I wasn't keen on especially as I had has mild ophtalmopathy from graves in the past, mainly dry eyes, but scared RAI would make it worse).

I read about gluten free diet but never made that change before and during the remission phase. I ate healthily generally speaking, still do. Funny enough, but it might have been just a coincidence, I has tried gluten free and also lactose free in 2018, just before my relapse, only because I had digestive / reflux issues. Not sure if it was related to graves at all though. I was also entering peri menopause and I had lost my dad quite suddenly so a lot was going on there which could have triggered the graves relapse.

Anyway, I am glad that I had the thyroidectomy at the end. It really worked for me and went smoothly (I had the op last year in March). Now on levothyroxine 75mcg per day and seem to have found the right balance.

I agree with the above posts, that you need to see an endocrinologist who knows about graves and if you have any eyes issues, ask to be refer to specialist. The endo I saw in Bristol (during both episodes of my illness) was brilliant so I was very lucky.

It's a long journey, not always easy, but it is treatable and you need to be patient. Take care of yourself.