ME and Thyroxine

[beaton]

My friend has had ME for over 30 years.I don't think she wants a cure as it would affect her benefits. But I did hear that giving thyroxine could help. Does anyone know anything about this?

[Bearess]

I have ME and I'm on thyroxine...I can assure you, if there was a cure for ME she would want it and she would gladly give up her benefits to be in good health....I know I would...the thyroxine hasn't helped me and I've been taking it for 29years since I was diagnosed with an under active thyroid

That's all I can say in answer to your question / that's my personal experience and I'm not a doctor, I'm a sufferer

[beaton]

Hello Bearess,thank you for your reply. I didn't mean to offend,I know most people want to get better but some have other agendas.I would love to help this person that is why I asked the question.I'm sorry thyroxine hasn't worked for you.(Has your GP offered you T3? anyway I wish you well.

[Hidden]

I don't have ME but I do have Fibro. I too am sure your friend would want a cure if there was one. I am on Tyroxine for 18yrs for underactive thyroid and it keeps thyroid levels in check but does nothing for the pain and tiredness of Fibro...not sure it would help for ME either.But I am not a medical expert....

[beaton in reply to Hidden]

Thanks Mary.

[_Phoenix_]

I too have fibro and I too am on Throxine. Thyroxine will only work if you actually have a thyroid problem, if 'normal people' (i.e. with no thyroid problems) too thyroxine, it's likely to just make them have the symptoms of hyperthyroidism (over active thyroid gland), which can include being a bit hyper (hence why you might think it would help M.E.), but there are also other less plesant symptoms like thyrotoxicosis which can actually cause fatigue, and other dangeroues symptoms like heart arythmia.

[beaton in reply to _Phoenix_]

Hi Phoenix, Some people with ME could have a thyroid problem that is borderline.When I was diagnosed with an underactive thyroid my bloods came back ok but my GP believed in treating the person not the test results. Since then I have been told my thyroid problem is autoimmune.Many of the symptoms are similar to my friends and I read somewhere that trying thyroxine was an option rather than doing nothing which is the case for my friend for the last 30 odd years.

[_Phoenix_]

Yes I totally agree, my thyroid was borderline for years before it actually went into the range where my doctor would consider prescribing thyroxine, so you're lucky to find a GP who will prescribe for borderline. Is your friend with the same GP? Has she had her thyroid tested?

Without wishing to sound controversial- do you think your friend actually has M.E.? Its one of those illnesses (like fibro) that people can 'fake' because it can't be proved (well not without extrememly expensive functional MRI test). I don't know one person with M.E./Fibro who wouldn't want to get rid of it- regardless of benefits. I'd rather get rid of my fibro than win the lottery!

Hope this doesn't come across as offensive, I really don't mean it to be, just wondering x

[beaton in reply to _Phoenix_]

Hi phoenix,My friend doesn't have my wonderful GP. She had the same doctor for many years until he went to New Zealand. (I wonder why?) She has just started with his replacement In the past she received very little help from GP.This is why I wondered if she might get help from his replacement ME is a difficult illness and I wonder if her GP didn't believe she was a sufferer.She went down with it in the eighties after her marriage broke down..She has had help three times a day ever since,plus dla etc.Now she is of pensionable age,loss of benefit would make a difference to her income.I don't like to criticise but have often wondered over the years whether she did have ME or not.

[tulips123]

Thyroxine is prescribed to treat under active thyroid, which gives symptoms of fatigue, feeling cold, gaining weight. Everything slows down. Maybe similar symptoms to ME, not the same condition. Blood test is necessary to rule out thyroid problem.

[beaton in reply to tulips123]

Thanks Tulips123

[_Phoenix_]

Ah I see. Maybe she has just given up on the hope of anything helping if she's had unhelpful GPs for years? If she lives near you why doesn't she try registerig with your GP? I certainly wouldn't have any loyalty to a GP practice that isn't helping at all- unless the replacement doctor is better. Certainly worth getting the new GP to check her thyroid again, as I've said, it does change over the years x

[beaton in reply to _Phoenix_]

I think we are thinking the same way Phoenix.

[Hidden in reply to beaton]

I hope your friend gets some help, terrible to have a gp who doesn't listen or fobs people off. I am lucky enough to have a gp that treated me years ago (and my daughter in recent times) when we were borderline, ours too is autoimmune.

It would be a good idea for your friend to be tested for under active thyroid, or anything else that causes symptoms of ME. I would imagine like Fibro it's a case of diagnosis when other illness has been ruled out not just assuming it's ME with no tests at all.

I have an acquaintance who always told me she had ME, diagnosed years ago in the late 80's early 90's, then a while back she said that her diagnosis had been changed to Fibro, she totally depends on her benefits and also likes everyone to know she is very ill. When I was diagnosed she suddenly had a lot of things added to her diagnosis that made her WORSE than me (her words) and she has told me how bad I will get! I then found that she was bringing me down making me feel I had been given a life sentence. I have had to put distance between us.

Luckily I have this place and another good friend who has Fibro but keeps me positive and is a great help to me, we support each other. It might sound bad but some people do (for want of a better word) 'like' to be ill for the attention it brings them, probably through no fault of their own, I feel bad for them, and I am not saying your friend is like this at all. But you have mentioned she may not want a cure and although I said she probably would on seeing your other posts it made me think of the person I mentioned.

Your friend may need these tests and if you can help that is good, but she needs to want to be helped too.Hope it all works out for you and your friend.

Mary x

[beaton in reply to Hidden]

HI MARY,this sounds so familiar.Thanks for replying.

[Cat53]

Hi Beaton, my grandson has ME and at the start of February I took him to see a Kiniesiologist. Under her care he has improved by 50% and climbing. She has given him supplements to boost his endocrine (hormonal) system. His Adrenal glands in particular were constantly in overdrive flooding his body with the stress hormone adrenaline, his pineal gland ( this controls our sleep rhythmns) was under active, the list was endless. He also had candida. He had to stop eating wheat, turkey, chicken, garlic onions and sugar amongst a lot of other foodstuffs. He is now at a stage where he can gradually re introduce these products, except for sugar and white rice etc. he has now applied to go to college to study his A levels and been accepted. He is taking driving lessons and feels he is on the road to getting his life back. He is only 18 so the last two years have been hard for him, but he has been such a star. I would highly recommend this form of holistic treatment for all. We were lucky as Jake was a case history for a trainee and a friend. I think with all the supplements in total it's cost about £200 spread over the 6 months. The most outlay at the begining. We could have spread it out even more but wanted to dive in and get on with it.

[beaton in reply to Cat53]

Hi Cat,Thank you for your story,it is most inspiring. I shall look into kinetics for my friend. I wish Jake the very best for the future. With a mum like you I know he will do well.x

[Cat53]

It's Kiniesiology....different to kinetics. Thank you for your comments.

[beaton in reply to Cat53]

Thanks.x