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Thyroid UK
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Graves disease, diet, drugs and avoiding surgery.

Hi everyone,

I have been hovering about reading the posts on this forum for some time and found the experience and insights informative and helpful so thankyou to everyone for their candid reports and experiences.

I am now compelled to write and ask for some advice.

My partner, Kat, was diagnosed with graves disease around six months ago. This was after several doctors had fobbed her off with tales of throat infection and chronic headaches. As I am sure you have guessed, it was goiters and migraines.

Only one doctor at the practice had enough insight to run some blood tests on her thyroid so, rightly or wrongly, we have some faith in him.

She was sent to an endo who put her on carbimazole. As it turned out, she is allergic to carbimazole. This resulted in a hospital stay and anaphylaxis. She is now on Propythiouracil.

In addition, she was given propranolol. Although this did lower her heart rate, it over treats anxiety and she becomes quite narky and in her own words "a horrible person to be around". As a result she has taken herself off it a few times.

She works in customer service on public transport so is quite concerned about this. The thing is that she is occasionally put in threatening situations by customers and has always been able to deal with it but now, when some anxiety kicks in, she perceives situations to be more threatening than they are. This has been flagged by some management and there have been some comments about whether this is the job for her. She does not want to lose her job, she enjoys it when able and for the industry it is, it pays well.

Apparently her thyroid levels are not coming under control (we are currently trying to get copies of her records and results) so there has been some talk of surgery. She is not keen on this at all. She feels that it (and RAI) is a one way street and from research she has done, rarely is an end to the problems, usually resulting in the development of one or more alternative immune disorders to take its place. I tend to agree. I do however assume that the experiences you will hear about on forums etc will tend to be more negative simply because, if it is a success and you can get on with your life, you are considerably less likely to be seeking advice.

So, finally, after my lengthy tale, these are my questions.

I was wondering if anyone had had a positive result from either RAI therapy or a thyroidectomy?

I personally am not a great believer in homeopathy and think, with this condition it could be fatal, but I do believe an holistic approach could be valuable. Does anyone have any experience of successfully complementing traditional treatment with diets, supplements etc which could aid her energy levels, help minimise the reliance on PTU and possibly avert the need for surgery? Any references to specific diets would be greatly appreciated as figuring it all out and managing it will fall mainly on me when she is struggling. (I am self employed and do most of the cooking anyhow but when she is struggling, I have the all of the house and dogs to tend to so time is at a premium)

Does anyone (please pm me) recommend any particularly good endocrinologist in Scotland? We would willingly travel to England but not sure how referrals etc would work. We are near Edinburgh.

Thankyou for any advice you could offer.

Russell

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Your poor partner. I'm in remission from Graves so I've been where she is. I was so grumpy (I'll call it grumpy - I was probably really aggressive and awful) I felt that Graves had changed me and the real me was nowhere to be found.

I had the run around too, I went to a doctor in August, I was feeling so ill, my heart was beating like it was going to jump out of my chest, it had been like that for a long time and I'd had so many nightly lilttle things that I was beginning to feel like a right hypochondriac. Anyway I saw this doctor in August, she looked at me like I was a total hypochobdriac who was completely wasting her time and said 'I think you're needing your holiday' she didn't add 'dear' but she might as well have done.

I went n holiday - drove all the way to Provence sucking Dr Bach's Rescue Remedy llosenges to try and keep calm and eventually towards the end of September I nearly killed myself in the car one Tuesday night, saw the doctor on Wednesday, had bloods taken on Thursday and by Friday I had started on carbimazole, had a consultant's appointment and an appointment for more bloods in four weeks time.

I was 64 which I think is on the old side for a Graves first timer and I was SO tired. I was sleeping almost day and night at that point, I had elderly pensioner friends who had more energy than I had, I felt dreadful. I couldn't take beta blockers because I have asthma so I had to sit it out until the carb kicked in which was tough - although it was probably tougher on my other half I dare say.

I'm full of admiration for hunger people who have jobs and families, I honestly don't know how they do it. I never liked all that I'll, I lost a huge amount of weight so I looked slimmer than I had done for years - so on the outside I looked good, underneath I was a mess.

It's such a shame Kat can't take carb but I think PTU is very similar. I was treated with block and replace which is where you take a large amount of antithyroid drug - in my case 40 mcg of carb then when your bloods get to a better place they add in increasing amounts of levothyroxine until things look good then one day you stop the lot and wait to see what happens. I've been in remission since November 2013.

When I started carbimazole my pharmacist told me to take a large dose of vitamin C every day so I always took 1000mcg slow release vit c with zinc. I was also low on B12, inside the range but only just so I bought and took Jartows B12 methylcobalamin, I didn't need folates or ferritin but a lot of people do so it would be worth checking that out. I also took CoQ10 and a multivitamin and mineral but I'm no longer convinced about multvits.

I ate a very healthy diet with lots of oily fish and plenty of vegetables. As you can see from my name I also ate a lot of chocolate - fruit and nut were two of my five a day for a long time.

I have now gone totally GF to try and reduce my antibodies, last Blue Horizon home blood test I did showed them going down which was encouraging. I've cut out sweets for all sorts, cake, biscuits bread and all that sort of thing - mainly because I was given steroids for arthritis and that triggered T2 diabetes and that sort of things spikes my glucose levels but I think quite a lot of people with thyroid problems follow a GF diet.

I was always told that should I relapse then it was RAI fir me! A few weeks after I stopped my meds I decided I did not need the stress of worrying that I might relapse and have to put up alight not to have it so I went to see my GP and asked if I could be forced to have it - no, and if the hospital could refuse to treat me if I refused and again the answer was - no. So I went Holme and got on with life. I was lucky though because I kept very well in carb. Hopefully Kat will be fine with PTU.

This is quite helpful tpauk.com/main/letter-to-fa... There are lots of versions but they are basically the same. I don't know much about working with Graves but hopefully someone will come along and give you tips on how to deal with human resources etc.

I thought I was becoming mentally ill - I wasn't, and my first email on here was to ask if I would ever feel normal again and yes, I do, or as normal as I'm ever going to be.

I wish yu both luck, Kat is lucky to have such a kind caring partner. Graves is a tough horrible condition to deal with .

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Hi Fruitandnutcase.

Thanks for replying.

When Kat was undiagnosed she too felt like a hypochondriac and thought she must be going insane so in that regard she was grateful for the diagnosis as it vindicated her regular doctors appointments.

I recognise the weight issue. When she had the initial onset, it was preceded with a couple of months of people saying ' you look great, you've lost a bit of weight ' etc, all while she steadily felt worse and became more and more anxious and introverted.

To her credit, she recognises when she is being 'cranky' and accepts that, although I am unable to entirely understand, I am trying to help.

The larger issue for her is that she is 23 and is looking at a long time of medication if she does not go into remission. She sees herself as potentially unemployable her condition does not improve. She is an absolute animal lover and can't get out on the horse or even walk the dogs as much as she would like. Even if she doesn't feel bad, if she sits, she will fall asleep and the day/evening is gone. She has a very bleak view of the future right now.

She is 6 months in and her bloods are not as good as they would hope, that is why there is already talk of surgery. We really need to get copies of her labs.

I think we will have to look to get some detailed bloods done privately including vitamins etc. Then I can start modifying our diet and she can start some supplements or something. I personally believe that it would do her alot of good just to get up to the stables a couple of times a week.

It is a relief to know that they cannot force her to have surgery. Despite normally being quite feisty, when she is in a poor way, the anxiety and exhaustion make it very hard for her to stand her ground. That is actually one of the harder things to watch happening.

Hopefully we can somehow bolster her system and get things moving the right way.

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I can just imagine how awful she is feeling - its hard to describe how terrible it is, I honestly thought I was mentally ill or was developing Alzheimer's or something like that. I think it must be much worse for someone young and I know how she must feel the future is bleak.

I was desperate to keep going to my gym and Pilates and I managed most of the time, my Pilates teacher is a physiotherapist and she adapted everything to suit me, both there at the gym I was really just 'ticking over' doing the absolute bare minimum but I was there and it was my way of saying 'stuff you' to Graves, I felt that if I gave up the things I enjoyed then then what was left, so I can see why she misses horse riding and walking the dogs - it is part of who she is. Hopefully she will maybe be able to find a way she 'can tick over' with her animals. It's very hard when you feel you are losing what makes you who you are.

I would do as much research as you can - look at the Thyroid UK site thyroiduk.org.uk/tuk/ for a start.

Be as informed as you can be, keep a record of all Kats different test results and their lab ranges - don't just accept it when a doctor says 'your results are fine' - make sure you know exactly what they are.

It might be that Kat ends up having to have either rai or a thyroidectomy, I think you have to remember that lots of people do have that done and get on well, they just don't use this forum. I would say just don't let anybody push her into doing something she doesn't feel happy with.

I seem to be the only person who had replied so hopefully someone more Kat's age will come along with more ideas.

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Hi Russell & Kat I was diagnosed with graves in 2001when I was 36 yrs old. I had been poorly for a while and my GP said it was a mental illness so I changed doctors and blood tests done and saw a endo within the week. I was told my levels where dangerously high being 3 times what they should be and I could of had a stroke. I had two children at the time, had lost a lot of weight and my husband just told me he was leaving!! Oh and my dad just died a month earlier! So not a very pleasant time in my life.

I was put onto carbimazole. I can't remember everything in detail as life has been a bit hectic since then. But I will try:

I stayed on carbimazole slowly reducing doseage for a year or so. I moved area, etc then after two to three years of staying within the range My levels went very high again and I went back on the carbimazole.

they wanted to give me RAI but I had recently had twins so kept me on the tablets as I would of had to stay away from my children for over a month.

I have had a constant battle with the doctors because they want to operate or give me RAI saying I will always have graves and it's not good to stay on medication for a long time because of the various risks. They changed me from carbimazole onto PTU

I have noticed at extremely stressful times in my life my levels shoot up: my dads death, divorce, child birth, mum dying etc etc but the doctors say no there is no evidence that this is correct!

I am now 50yrs old I am not on medication even though the doctors think I am! I have regular blood tests at my GP surgery to keep an eye on my levels as the hospital has discharged me as I won't have the surgery or RAI

I control my levels through diet and lifestyle, the doctors of course say that diet has no effect on autoimmune disease!!

I have followed the paleo diet for a year then slowly reintroduced various foods but I find a gluten free and sugar free diet works very well for me plus I practice yoga and meditation. My doctors don't agree with me but I believe my health is in my hands and is my responsibility. Doctors are very clever and perform amazing surgery but don't look at the body as a whole and don't except that stress and diet can effect the body.

I know a lot of people who have various autoimmune diseases, ME, Fibro etc and they also control there illness with their diet.

I gave myself a break over Xmas and have had alcohol, cakes chocolate bread etc and apart from putting on weight I have felt agitated, exhausted and unbalanced so I'm back to my healthy lifestyle drinking a lovely herbal tea as I type and I'm starting to feel so much better and back in control of my body.

The reasons for not having surgery etc is because I feel having no thyroid function what so ever is even more scary plus can they guarantee the Rai won't affect other tissues in my body ?

I hope I have been of some help to you

Sandra

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I wonder if I can be of any help - adding in my own story...?

I would strongly urge Kat to look at how to eliminate stress - no job is worth dealing with health issue as well.

I have an enlarged multi-nodules goitre and needed no medication until 2012 when my thyroid 'blew' in a rather dramatic way, almost certainly because of prolonged stress with family trauma/illness. I have been on Carbimazole. My review yesterday and we will again look at surgery/RAI in four months time. The TSH is becoming suppressed again. I have recently had another AF attack.

To say I have tried everything to avoid surgery and help my body cannot be over-emphasised. Homeopathy with Iodum, Herbs - Lemon Balm Bugleweed etc..... diet, no alcohol. Sadly, more stress because my husband is now mentally/physically disabled,

We are each individual and soI what suits one might not be the answer for another, What I have learnt is that you never know what awaits and with something like an overactive thyroid....stress is extremely hard to cope with.

I also meditate, T'ai Chi, reflexology..... Treat the adrenals....

Work with both conventional and complementary doctors.

And yet I will have to face the decision to I continue to bumble along or take the unknown risk of surgery/RAI and being under active....?

I was told yesterday by the endocrinologist that the RAI treatment given at Guildford, Surrey, is different in that they only give small doses based on the weight/height of the person and after doing an uptake test. This rather than a standard one size fits all dose that I am told is given in other hospitals.

I agree with Sandbags - diet and lifestyle will help enormously to keep the thyroid balanced. And we can all deal with 'small' levels of anxiety but prolonged periods of stress will only weaken further the compromised immune system.

I wish you, and Kat, well and hope you will be able to reach a decision that is the best for you. Kat is very fortunate to have you.

Carole

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Hi everyone,

Thank you for all the responses. Sorry for the delay in replying but I felt the amount of experiences and information you have given deserved sitting at the laptop and replying properly rather than fiddling about with my phone.

It has been heartening to hear of some more positive experiences and of some successes with diet and lifestyle changes.

Kat and I both feel that the option of surgery/RAI is very much 'treating the symptom' We are at a point where we are hoping that by managing diet and lifestyle we can support her immune system and help the conventional treatments put the condition into remission so the need for surgery/RAI is averted. Kat is concerned however that the fact she had a 'thyroid storm' is already a bad warning sign as it is apparently quite rare and potentially fatal. In addition she already has an hereditary liver condition ( Gilberts syndrome) and so is concerned about liver related contraindications with PTU. Does anyone have any experience of this?

Today we have been and acquired our first batch of supplements. Vitamin c - soluble and slow release, a concoction of B vitamins and some cod liver oil. The rest of the week will be spent deciding on which ingredients must be added to our diet, which can remain in our diet and which must go. I am not looking forward to suggesting a reduction in noodles, pasta and bread - Kats favourites! Although I am reasonably healthy, my diet would not suffer from some improvement so we are in this together! After some testing we will have a look at the need for folates and ferritin.

Does anyone recommend any particular testing services (there seem to be a few that pop up) or are home test kits fairly reliable?

The stress issue comes up a lot. I am not sure how enthusiastic Kat would be about yoga, meditation etc but if we can at least get her to the stables and out with the dogs a few times each week I think that would help her relax a lot. Animals are very much her thing. Kat can be quite 'stressy' but we will find a way to manage it. I actually feel a lot of it is symptom rather than cause so if we can break that cycle it should help.

The only other hurdle is that, through working in close proximity to the general public, she catches every cough, sniffle and bug that is doing the rounds. They absolutely knock her for six, beyond any normal 'healthy' response.

I have a relatively quiet work week this week so it is time to put some pressure on the GP to hand over her records. I do quite enjoy that kind of thing, when people are being obstructive for no justifiable reason, because I will stand there asking them to justify it. Maybe that is just me.

I am half way through my first Graves book and have another couple winging their way to me in the post so the research is starting in earnest. I am a bit old school and prefer a book, a highlighter and some post-it notes! It just really annoys me when I can't find that really relevant article that was on one of the 30 pages I just clicked through!

Kat also said that it was really nice to hear others feelings that matched her own regarding her sanity and symptoms.

Thank you again for all your advice and well wishes.

Russell

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I can't give specific advice on Graves, but I am a massive believer of deprioritising work when you're ill. It sounds like it's a source of some problems. Is it possible for her to go part time, or to move into something that's less stressful, maybe working with animals? If she feels like she might not be employable in that field, I think it can be good to give herself permission to realise that actually she might not be able to do that kind of work anymore, and that doesn't reflect on her moral fibre , it's just part of the illness. This might require rearranging your lives to manage on less money.

I had to go through this process because I've had my thyroid removed due to cancer. Getting a diagnosis like that does bring home to you that you have to take time off work. But actually I had big thyroid problems for years, and I could never get into work before 11am. I knew I wasn't coping, but I still never really made the connection that I was ill and its okay to not be able to work. Was chatting to a friend tonight and she asked me how many years I would have gone on like that if I hadn't been diagnosed with cancer. And honestly I couldn't guess, it might have been forever! I can't imagine that, now.

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