My friend has recently been diagnosed with Graves’ disease. I have Hashimoto’s but don’t know a huge amount about Graves. My friend lives alone abroad away from family, and this timing for diagnosis is obviously pretty rubbish. I am wondering if anyone could suggest how best to provide support? What did anyone in that situation find helpful from people? I don’t want to bombard with information / push a point of view or anything. But I just wonder if there are any bits of information / websites people use that were useful when starting out learning about the disease, without being overwhelming?
Thanks as always
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Yppah
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Having a friend looking out for you especially with a head start on knowledge will be a huge bonus for your friend.
1st step is to always to confirm Graves diagnosis with correct antibodies testing. Graves can only be confirmed by Thyroid Stimulating Immunoglobulin (TSI) or TSH receptor antibodies (TRAb), which are high when Graves is diagnosed.
Thyroid Peroxidase (TPO or TPOab) and Thyroglobulin antibodies (TG or TGab) are often positive in BOTH Hashimoto's / autoimmune thyroiditis AND Graves, both are autoimmune. TPO has higher elevations in Autoimmune thyroiditis.
Autoimmune thyroiditis can have phases of transient hyper but ultimately hypo. Graves causes continuous hyper.
Reading up on the subject or Graves and learning the terminology, it will be a little over whelming so a little at a time and take notes to reread.
Keeping a diary of symptoms, medications and supplements and getting into habit of obtaining test results and learning how to understand them.
Final point, medics often guide patients into having permanent treatment (radioactive iodine or surgery) early on, but it’s important your friend has the opportunity to research & consider the options before being rushed. Preparation for this can is helpful.
Ah so it’s not necessarily clear cut then. I’ll mention at an appropriate time. I was thinking of posting a little something cheerful, so a nice notepad might be a good idea. Thank you
I agree with humanbean Elaine's site really helped me get diagnosed when my GP thought it was the menopause. Your friend should join and post a question on her forum because she will answer.
Hello, I was diagnosed with Graves’ Disease at the end of July. I found the following particularly helpful when I was at my lowest and totally confused about the condition:
He uses a natural approach but have no fear - he provides comprehensive information on Graves’, Hashimoto’s and conventional medical approaches. He also has personal experience with Graves’ Disease.
Elaine Moore’s website (which I discovered on this group!): elaine-moore.com
Also, Sarah Ballantyne’s book, “The Paleo Approach, Reverse Autoimmune Disease and Heal Your Body”
Now it depends on your friend’s personality. Otherwise, she may be overwhelmed by all the information provided. Personally, I find knowledge empowering because many doctors don’t have a good understanding of Graves’ Disease, IMHO.
Most importantly, be there for your friend even when she may not act like herself. Be patient with her and always offer words of encouragement. Let her cry when she needs to and if she ever feels like she’ll never get better, remind her that she will! You’re a great friend for posting here on her behalf.
Thanks for sharing. She has done a bit of reading about diet but doesn’t feel ready to switch, and appetite large at the moment. But the fact she has been reading suggests she will want all the info at some point. I am very lucky to be able to note yours and others’ suggestions down for when she is ready! And I hope you are doing OK with your very recent diagnosis, a very tricky time for it: Thanks again
Apart from those already worthy websites mentioned there is always Thyroid uk the charity who support this forum.
There are people on this forum from all over the World and so your friend can just throw up questions on here when anything and everything becomes confusing.
Graves is a poorly understood and badly treated auto immune disease and it will be in your friends best interest to read up and try to get some understanding of the disease and the current treatment options available to them.
Yes, and be aware, this may all go over your friend's head depending on where they are in their thyroid journey.
When my Graves was at its worst I lost friends. Mainly because I was quite intolerant and things I had ignored for years (I was quite long suffering pre Graves) I just couldn’t be bothered putting up with.
I was tired - well utterly exhausted, I had no energy to cook or do much around the house, my heart pounded so much I couldn’t sleep which was why I was exhausted. My muscles became so weak I couldn’t get myself up off the ground without help. I used to do a lot of long distance walking but that was out.
I kept going to the gym and Pilates but I toned everything down at the gym - I only really went for the company and to prove to myself that Graves wasn’t going to rob me of everything I liked doing and totally ruin my life, my Pilates teacher is a physiotherapist so she modified everything for me.
Basically I felt tired, really grumpy and bad tempered. I felt as if I was either developing dementia or becoming mentally ill. I was neither because when I was treated and went back to normal I was ok.
I kept a diary of how I was feeling from day to day. That was helpful because when I thought I was making no progress when I read back to see how I had been I realised I was indeed making progress. . It was also useful because I kept notes on how I felt, the medicines and doses I was taking and my blood test results along with their ranges. I was able to see how I felt on the various amounts of medicines I was taking. It was also good because the night before I went to see my endo I could revise and tell her exactly how I had been feeling since I last saw her rather than just say I was fine when asked. I also wrote down any questions I wanted to ask at my appointment.
If you look on ur friend is taking carbimazole then I was advised by my pharmacist to take high strength vitamin C along with it which I always did.point her in the deprecating of this site too - I doubt if I would have survived without coming on here - it kept me sane 😉
Thanks so much for sharing your experience, it sounds very overwhelming. I am glad you are back to normal. I think I will send her a little notebook to jot stuff down, it sounds really useful. Not sure what meds she has so far, other than beta blockers, but will gently probe and point in directions of all these websites mentioned and info. She described feeling tired and wired also, and is normally very active also. So at the appropriate time it would be nice if I could point her to this post and the positivity of recovering. Thank you
My first post on here was headed ‘Will I ever feel normal again?’ The answer I got was ‘Yes’ and sure enough I do.
I have asthma so I couldn’t take beta blockers - I had to wait for the carbimazole to kick in but I think it helps the people who can take them. I was treated with ‘block and replace’ and it wasn’t until I got on to the replace part of it and started taking thyroxine that I lost the urge to either snarl at people of burst into tears - when I wasn’t sleeping that is and began to feel better.
Thank you, she is fairly early on, but has read a bit about diet. Sounds like first thing is to check for the right tests / diagnosis. Thanks for the suggestions!
Yes, absolutely , and those antibodies unique to Graves are expressed as either a TSI ( roughly translated as a thyroid stimulating ) or a TR ab ( roughly translated as a thyroid blocking ) antibody,
The symptoms experienced will be very much dependant on whichever antibody is predominant and once on the anti thyroid drug and thyroid hormone blocked, the distressing symptoms will start to ease off.
The Elaine Moore website has many sections on alternative, more holistic options and there is much written on diet and life style choices, which actually do make a difference.
Graves is said to be a stress and anxiety driven autoimmune disease and can be triggered by a sudden shock to the system like the unexpected death of a loved one, or a car accident.
This is a time for the patient to rest and start taking care of themselves, but there can be a mismatch between the brain running on at 1000 mph whilst the body is exhausted and can't raise a gallop.
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