Hi I cannot read all posts as I have chronic fatigue but it seems allot of questioning on M.E diagnosis.
I don't want a label-the only label I want is "good health" that is what I strive for!
as you know there is no definitive test for M.E and dr sarah myhill classes CFS as a symptom of mitochondria.
I was diagnosed hypothyroid 3 years before the diagnosis of M.E after influenaza b (real flu) however I was struck down 20 yrs before with scarlet tina! and believe that caused cellular problems
when I read online that M.E is a fake illness it causes me so much upset as I have been ill for 17 years...lost my life to become bedbound and housebound with carers! lost all friends and family due to ignorance!
If M.E isn't really then why is there action for M.E. which I belong too! the name doesn't help for sure!
all I know is the illness is real and I just wish that the NHS would support us more than just pacing and CBT-a total joke!
I read tears behind close doors when it was first out in 1999 and that spurred me to go and see dr peatfield! I didn't want the label of M.E! I was ridiculed of having yupppie flu so of course I wanted it to be something else! but the armour didn't help...the adrenal treatment did...but not enough to be out of the wheel chair but I was able to be only partially bed bound..
the truth us until there is a definitive test for M.E (preferred name for M.E sufferers) we just suffer on with minimal support
when people think their friend or someone they know has M.E I immediately say it could be thyroid or adrenal-both. I have passed on the adrenalfatigue.org link to so many as I BELIEVE many have adrenal exhaustion!
I know so many on here are wanting to push the M.E label into the bin and yes please get all thyroid checked. but for me 17 years of trying everything and still so ill...
I am too ill/too confused and just so upset with not knowing what is really wrong with me...
b12, vit d all fine. iron fine but have thalassemia trait...
if something attacks the system then surely it will affect everything in the body and the thyroid is one...
I just wish I could figure it out and I just want the only label of "good health" so I can have my life back
clearly this is a great place for the thyroid support and you all seem to be very knowledgeable...what is what with the thyroid and I cannot even see straight due to fatigue and flu symptoms 24/7
I know my thryoid is not being treated correctly-that is my inner feeling-but I also believe cellular damage causes problems...so treating the body holistically for cellular repair is also my intention...
i will therefore be grateful for all your support with treating my thyroid properly and will then post my results.
anyway didn't sleep well with the injustice of my journey...
thank you
x x
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Butterflyfairy, Fibromyalgia, CFS and ME symptoms are real and debilitating but the syndromes appeared in the late 70s/80s when thyroid blood tests were introduced to determine thyroid dysfunction instead of diagnosing by clinical symptoms, so it's widely thought on thyroid fora that they are due to undiagnosed and undertreated hypothyroidism.
In many cases optimally treating thyroid will relieve some symptoms and that's why so many thyroid patients suggest thyroid is the cause, not to be insulting or dismissive.
Of course, FM, CFS and ME exist outside of thyroid dysfunction, but they are symptoms of disease, not a disease themselves. When people say they are a 'bucket diagnosis' they're not denying the illness, but are being critical of the medical profession for not drilling down to find the cause of the illness causing the symptoms.
Just to add to Clutter's post, another possibility is adrenal dysfunction. Low or high cortisol and other adrenal-related hormones are commonly found amongst people with thyroid issues.
And low vitamins and minerals are also common. For example, if you had a ferritin (iron stores) test arranged by your GP, and the result was 14 with a reference range of (13 - 150), you would be told by many doctors that the result was normal. But you might not feel well until the result was 80 - 100. If you also had bottom of the range vitamin B12, vitamin D, and folate, any one of these could make you feel absolutely terrible.
And some people turn out to have undiagnosed Lyme Disease.
Many people with the above problems are told they have ME or CFS or fibromyalgia, and once that diagnosis ends up on your records you get no help at all and are basically left on the scrap heap. But if the problem is low nutrients this can be fixed. Adrenal problems can be supplemented/treated, and the same is true of thyroid. What we object to on this forum is people being left to rot when their health can be improved.
I do understand the perspective and believe me every-time I hear someone say Oh they know someone with M.E I do doubt it.
however there is no clinical evidence of M.E being a disease in its own right and there is no clinical evidence it is not. it is recognized as an illness and those that have tried everything (and I mean everything) have to carry the weight of the damn label.
CFS is not a favorable term for those with severe M.E we feel it doesn't encompass everything. CFS is a syndrome.
however now they want to change M.E to another name! i read it was called something else in the eighteen hundreds... it isn't new!
as with thyroid disease not all illness show with blood work so we cannot eliminate either as a disease.
yes I agree many recover with thyroid and adrenal treatment however I didn't...and I am sure 250-000 M.E sufferers have tried this route too-I would always promote it.
if a car is in a crash as in a body is crashed due to a viral invasion then it will impact all aspects of the car. we have to look at everything and if M.E is the only label then what do we do?
I am too ill to write anymore but I just wanted to voice my self as it has been an arduous journey.
i have request my tests from GP and will appreciate support on thyroid as I now it is out but as I said I did this years ago....
In your earlier post a day ago it was suggested you obtained your Thyroid blood test results with ranges and post them in a new post. At that point I do know from following this forum you will receive some excellent advice. So until then we are all guessing.....
Butterflyfairy, you said in an earlier post that ME symptoms and thyroid symptoms are 'different', but you didn't enlarge on that. I would like to bet that all those symptoms you attribute to ME are actually thyroid symptoms.
There are more than 300 symptoms of low T3. And doctors know one or two of them, at best. They just Don't learn about symptoms in med school. They also believe that to treat thyroid, all you need to do is take one little pill a day. They're not really very sure a little pill of what. Nor how much of it. But for them, if you take that pill, there's nothing wrong with your thyroid.
So, anything you complain about, after starting thyroid hormone replacement, in their minds, just has to be due to 'something else'. So, they've come up with three choices of 'somethings' : ME, CFS, fibromyalgia. Take your pick.
I read somewhere that 'if you have more pain than fatigue, it's fibromyalgia ; but if you have more fatigue than pain, it's ME/CFS'. And that's as scientific as it gets. There are no real tests. But, what's worse is that there's no cure and very little treatment. As the others have said, you'll just be consigned to the rubbish heap and forgotten. Which is why we encourage people not to accept that 'diagnosis' - which isn't a diagnosis at all, it's a get-out on the part of the doctor. We are not, in any shape or form, saying that your suffering isn't real. We know it is. But we also know that that suffering isn't due to some made-up label that is just there to let your doctor off the hook.
Dr Durrant-Peatfield cannot prescribe T3 -so sticks to NDT which is the traditional grandfathered treatment that even so is not readily available. Treating with hormones is tricky, so this is understandable.
If you can't tolerate T4, as I can't, then T3 IS the only solution- if your troubles are mainly thyroid based as strerssed here.
T4 is actually inert and you must convert it in your body to be usable, so any lapse there is critical & will inhibit any progress.
The way to test if this rhe case is a Reverse T3 test which is not available on the NHS but can be sourced privately from labs in the UK. [£70- ish].
Not totally final- as illness can push RT3 up too, as a way of slowing you down. So you WILL feel ill, like this.
It's a shoddy way to treat people and you will have to fight from a position of strength as to what you need and maybe pay extra for tests etc, whilst the NHS gets awake on the whole affair of Thyroid diagnosis and treatment using only T4 for the majority.
All I can say is that I was diagnosed with CFS/ME, after two endo appointments, by a doctor who said there was nothing hormonally wrong with me. He chose all my test results which showed ferritin deficiency, severe vitamin D deficiency, low folate and vitamin B12, as well as my low in range FT4 and FT3 and rising(although still under 3.0 at that point) TSH.
Hi thank you for all your responses. So sorry but too ill to answer you all fully.
I do agree that M.E is a label of the illness and not a definitive illness however when you are disabled with this diagnosis
& you have to fill forms out and you have to state that is what you have as that is the world we live in. I am angry and frustrated at my lost years of being disabled. i want to live again not just exist.
As I say I have gone full circle.
I wanted and believed it was thyroid in 1999. I did armour-dr peatfield. Then I read about Wilsons syndrome and my gp prescribed t3 (lost weight with T3 but still so ill) but don’t think gp knew what he was doing as it was my request.
Was on hydrocortisone and now adrenal rebuilder by James Wilson-helping so much.
Then went to see martin budd and he said about leaky gut! Treated that aspect.
I do have adrenal fatigue.
I do have hypothyroidism.
The only way I can describe symptoms different is that when I was just plain hypothyroid I didn’t have flu symptoms 24/7 or so disabled that I cannot walk or stand for more than a few minutes-being housebound and needing carers. I would fall asleep hypothyroid but not be so wired. also the neurological sx's
If this is untreated t3 then I didn’t know that.
so I am back here again where I started-I joined thyroid uk then and had the urine test that I think was in Holland all those years ago but I was too ill and too unsupported to even think straight and cannot remember the test but I know it said I was still under and not treated with t3 but the NHS wouldn't continue with the t3 as they said the blood tests were showing raised t3! My partner didn't support me further and then he left me...so I have just been trying to survive..
so please understand I am heartbroken for being so disabled with the label M.E. and not knowing what is what-I can barely read what I am typing.
On a positive note I am back here!! and I feel I need the proper support from a private ENDO CBT and pacing will not cure me!
*dr sarah myhill talks about mitochondria in her book but I am only a few pages in. she says CFS is a symptom not an illness-I am trying to see this perspective but imagine all those years and then you realise you have been fobbed off because the NHS don't have the knowledge-that is my pain. What do others think of her perspective? she seems to cover everything.
dr perrin has a different perspective about the toxins in CFS patients-the perrin technique and people have got well from it. I know when I have a massage I am so ill afterwards-dr perrin traces cfs back to the 1700's. However is he just treating the symptom?
another book read that florence nightingale had CFS-and she was bedbound for 7 years-perhaps adrenal exhaustion? perhaps mitochondria?
I don't want to treat the symptoms anymore I want to get to the root of it but I need help as I am too ill.
Thank you everyone for all your support and I will keep posting.
I totally agree with Dr Sarah Myhill, butterfly, and that's exactly what I have been saying. CFS = Chronic Fatigue Syndrome. A Syndrome is a bunch of symptoms - not just one, but a lot of them - with no obvious cause. The cause has to be actively sought out. And that's exactly what doctors Don't do. If it doesn't jump out and hit them on the first blood test, they shrug their shoulders and say 'CFS' or 'ME'.
"The only way I can describe symptoms different is that when I was just plain hypothyroid I didn’t have flu symptoms 24/7 or so disabled that I cannot walk or stand for more than a few minutes-being housebound and needing carers."
Do you have Hashi's? I can't remember. But if you do - or even if you Don't - it's pretty certain that your gland is going to get worse with time, rather than better. Therefore, you are going to get more and different symptoms all the time if your hypo isn't correctly treated - which I doubt yours has been. It doesn't automatically mean that it's a 'new' illness that's cropped up.
I have never been diagnosed with anything other than hypo/Hashi's and adrenal fatigue, but that was exactly me by the time I was 65. I'd just retired and was looking forward to travelling and going back to some sort of Learning, and, and, and... Instead, ten years after my diagnosis, I found myself bed-bound with flu-like symptoms 24/7. I was on NDT at that time. 6 grains! And I thought my life was over. I managed to rally a little bit but then went back down again, and further down than ever. at 68 I found myself in hospital with 'mystery' symptoms. Can't give too many détails about that time because it's all very complicated and I think my brain got fried! I lost a lot of my memories around that time.
I got out of hospital on a truck load of drugs that were making me even worse! I had to fight my way back to consciousness. Finally had a moment of lucidity when I ditched the whole pharmacy, and my brain began to clear. I ditched all my doctors, too. They were just making me worse! But blood tests told me I was bordering on starvation. Not that I wasn't eating - although I didn't eat very much, then - but I wasn't absorbing nutrients. I started researching, and supplementing, and self-treating with T3 only. T4 was like poison to me! And, gradually, I'm getting better, slowly, very slowly, like it's cell by cell that is Healing, one at a time.
There is no miracle cure. And if you rely on doctors, you're never going to get anywhere - for various reasons. You have to learn as much as you can, and know your own body, and what is good for it and what isn't, what it likes and what it doesn't. And what it thrives on. For me, that's T3, magnesium and B12. They are helping my body mend. But for other people, it could be something entirely different. But no doctor is ever going to find that out for you. Even though my doctor was so very nice and wanted to 'save me', he was just too ignorant and set in his ways.
Now, I'm 70. And I just amazed myself by walking the length of the car park to talk to the cat lady. And I stood there talking to her for about ten minutes. And if I think about it, I couldn't have done that six months ago. And then I was back, and up a flight of stairs, and I was only mildly out of breath - well, mildly for me. I didn't turn blue, or anything. But all that would have been impossible six months ago. And I could do my 'skinny' (skinny for me) jeans up this morning, which means I've lost a bit more weight. And all these tiny little victories have just made my day! And I'm happy. But five years ago, I was just like you. A messy heap of unidentified symptoms. Crying all the time, cursing the heavens for my misfortune, and preparing for the end. But if I can crawl out of that pit, so can you. I'm wishing it on you! lol
Hi Butterflyfairy - I have just read Dr Myhills latest book - Sustainable Medicine - and can see easily how things go wrong in the body. Are you reading the CFS book ? - maybe her latest book has new information for you. Have you changed your diet ? I too have had a huge haul back to wellness - you can check out my Profile by clicking onto my name ! Pleased to report as I hurtle towards 70 I have learnt some good things that are helping...
aww bless you! I always said I would be healthier and fitter later life!
just feel sad that I lost 17 yrs of constant bedbound/housebound. I shouldnt think about it so much. should think of the next 17 years of being stronger!! still in pj's and waiting for care worker. one day this will change for many of us!
healthy people really don't know how blessed they are!
I am only few pages in of mitochondria not hypochondria as I am really cannot read do to trillion sx's hoping my therapist will read it!
one day i will write a book about all I have learned-experience is the best knowledge.
yep did diet and it didn't change anything. I was with ex then so it was easier.
I'm hesitant to try di-ribose but it may help! so I'll let you know!
Like you I have been battling me/CFS/fibro since 2006..in 2004 I was diagnosed with hyperthyroidism waited six weeks for further bloods they came back normal.I tryed to get my life back on track ,,,until the diagnosis of hyperthyroidism I had a very active life excersised up to four times a week I had previously nursed my father who unfortunately died of cancer and then my mother had extensive surgery and I nursed her,, also I had a young son to look after to but I managed it no prob my husband who I am now divorced from worked abroad so we never got to see him much hence the divorce..what I'm saying is I have never gotten back to that level of fitness I bugged my doc with this for the first year after diagnosis of hyperthyroidism telling him I can no longer excersise or operate normally anymore..but every time he did bloods they came back in range so no further investigation was needed,that went on for another year or so,,I had lost faith in my docs and moved to another practice.. they did initially listern to me and sent me to a specalict. got results back two weeks later..diagnosed with me/fibro..that was that..but it by no means took my fatique/pain/and all the other horrid symptoms I I'm having away..they gave me paracetamol/ dhiyhydrocodine for pain not much help I'm in pain everyday and like you parcially bedridden on most days..I have to fight threw fatique and massive pain when I have to go out,,,no fun!!! Like you I have lost most of my mates threw this,,I no longer go out with friends as I can't manage the fatique/sweats/pain..I ,,like you want to get better..not be housebound on most days,,can't even attend family functions anymore,,why don't docs/endo listern to pacients..its like they
Own your body..they know it better than you do,,,,ermmmm no they don't,, I am totally sick of it...I am going to see another endo in DEC but its the same endo as the last app I had and that was useless but I'm going in fighting this time it will kill me fatique wise ect but maby its the only way to deal with these people
Butterflyfairy, the best we'll be able to do is to advise whether your thyroid levels, vitamin levels and cortisol are optimal when you post the results and ranges. Optimising levels can improve hypothyroid symptoms and general wellbeing but we're not pretending they'll cure all ills or undo mitrochondrial damage. Some people can't be helped much but may find the support on the forum helpful, nonetheless.
Hi butterflyfairy, I'm really sorry that you feel so awful, and all of us here can empathise and sympathise.
I know how hard it is to pick yourself up by the bootstraps when you feel so ill and it has gone on for years and years.
My feeling is that you should perhaps try working on one or two things at a time and try to improve matters as much as you can. Don't get distracted by worrying about your thyroid or your adrenals or your ME to begin with. Don't get swamped by other things.
In your situation I would suggest trying to improve any gut issues you may have and get your minerals and vitamins up to optimal levels. Don't worry about anything else because it is impossible to fix everything at once.
What kind of diet do you eat? How much do you eat? Do you eat gluten? What sources of protein and fat do you eat? Would you describe your diet as low carb? low fat? low/medium/high protein? Do you suffer from diarrhoea? constipation? Have you had vitamins and minerals tested recently? If you have, please post the results including the reference ranges, and we can suggest supplements that might help.
When things are really, really bad it can be difficult to know where to start, the problems seem so overwhelming. Getting your gut into the best possible state and improving your vitamins and minerals is a good start, and will reap rewards if/when you start treating your thyroid and adrenals later.
I can sense from your replies that you are a fighter at base.
Good that you have tried T3 -as most GPs are unaware of the benefits [only the false scare stories]. I'm on a steady dose as you were probably, but this is not ideal as the body adjusts own output following TSH drop. The idea I've read up is Wilsons procedure where the dose is lifted till temp rises and stays steady. T3 can be dropped slowly then. Support of the other issues mentioned above may help with better internal T4 regulation, thereafter.
This may not apply to you if you have pending Hashis ,high TPOs etc- but it may help set limits for you to work through to with a friendly Endo. [Must have!]
I heard that you cannot be diagnosed with CFS, if you have Hashimotos or a thyroid illness. With the over 300 symptoms of hypothyroidism and not having all proper thyroid tests, you cannot say you have another illness. You could have low t3 levels. Many with terrible symptoms don't convert t4 to t3 well and need t3 meds. Some develop hashi's after a virus.
I'm sorry but I have been tested for all thyroid profile in the beginning by many private thyroid doctors.
we cannot wholly tribute illness to thyroid alone we have to consider other aspects.
symptoms of many illness are similar and can be many as stated by doctors when I gave them the long list!
CFS is a term used by Dr Sarah Myhill to blanket all issues of Chronic fatigue syndrome. a syndrome not an illness. I recommend her findings albeit too ill to read it all. I would recommend her book that addresses all issues including thyroid. I wish I could be her patient but she wont take any other CFS/M.E patients on as she has written her book for us.
M.E is the label that I have been diagnosed with for the disability and hence why there is Action for M.E. after testing everything! on NHS and Privately.
there is no scientific proof that M.E is an illness or not an illness! or a label as CFS.
I have been ill -really ill-disabled-bedbound-housebound constantly with the label of M.E. and have to be reliant on carers. 17 years and wanting to give up! but I keep going with Hope...
for the last six months I intuitively felt my thyroid with 100mcg levo is off and I intuitively knew I needed t3 again.
had vitamin D tested. B12 tested. ferriten. liver and hashimotos. full thyroid profile however as all came back normal I will be seeking a private endo and am starting the NDT as per my other post.
however I also know I have to heal and repair the mitochondria caused by viruses/external stressors and all other invasive things that affect our bodies.
Yes treat Thyroid/Adrenals with love FIRST however if this doesn't help then you have to knock on other doors-seek other perspectives...
leaky gut-candida needs to be addressed.
my journey is not new I have learned allot and am just back here to share my experiences to help others who may not get well just looking at one perspective-thyroid disease...
I treat the body holistically and have tried everything from TCM to psychic surgery and all have helped me to this place
once I am well completely well and I have hope and faith! I will have more experience and more to share with everyone on here and action for M.E. it is a journey and we are all unique.
so with respect to you your statement of "you cannot say you have another illness" is not logical.
p.s please I am too ill to do anything but share my experiences. If this forum can help me with my thyroid and thyroid UK help with the private tests then I am so grateful.
I just cannot have people think everything is thyroid when it may not be...as dr myhill says in her CFS book-mitochondria not hypochondria- thyroid is the accelerator pedal in the car but the engine is mitochondria-fuel is diet and gut function-adrenals are the gears-
so anyone who wonders about it just get her book x x
hi I hate t4 just holding the packet it feels wrong-its toxic so no wonder you get flu symptoms on it. I am starting the NDT today and weaning of T4.
did this with Armour years ago but maybe my body didn't like it?
my flu symptoms are so debilitating-fevers-bed-bound so forth...I feel so incredibly unwell at rest. never well.
my lympth nodes are all swollen and raised-dr perrin has done pictures of this (cfs label again) and he also shows how congested spine and brain is with toxins. perrin technique is hard going thou to remove toxins although many get well from it!
a light massage and then I have more flare ups.
i drink tons water (not tap) MSM also helps remove toxins.
yes getting latest results from April tomorrow from surgery via carer.
I think Dr Myhill is amazing - however when you are feeling stronger you may wish to read Dr Datis Kharrazian - his books are excellent and his website informative. Hope you find something interesting to add to you extensive knowledge
I have exactly same problem. I was told I had yuppy flu (now know as ME) over 20yrs ago, then the thyroid problem. I go to ME groups under the hospital. I was told by a specialist it is a chronic fatigue illness but are not sure what is causing it. I am restarting my courses next Wednesday....feel like I am wasting my time as its 12 wks and the problem before was I just couldn't make every course as I was too tired to get there.
I have been put on meds for depression/anxiety yet I know I am not depressed I am just fed up with having no energy and not knowing why.
I have asked about it but they say it isn't that so no referral. When I went for an eye test the optician requested I had a brain scan as one pupil stays dilated. When I went for results they were trying to arrange app, I said no Ive had it. She clicked on computer, no all ok.
You feel like your going mad, but they are the ones that keep pointing out different things, too much creatine, high cortisone. When I bring it up later they say no they are ok now
the NHS do NOT recognise adrenal fatigue. so dont waste energy saying it to them.
in 1999 Dr Peatfield told me about adrenal exhaustion. he put me on Florinef-stopped me fainting!
years on I then discovered the fantastic book adrenal fatigue by dr j wilson-it saved my life as I was having horrendous anxiety and mind chatter-very scary.
I then went for private adrenal tests by salivia and my DHEA were so low they were not registered!
I started taking B5 and herbs and adrenal re builder by nutri adrenal.
I now take adrenal rebuilder by dr wilson and if you go on his site you can get more information as there are uk suppliers.
All the above helped me from being completely bedbound to only bedbound mornings. I am still in wheelchair and feel so debilitated at rest but I have other things going on...
cellular...
EYES OMG did you know that I had the same thing the year before I became disabled my puplis wouldnt dilate-it is part of adrenal fatigue and it is in his book!
I am not a doctor and can only share my expereicnes we are all unique and we have to treat the body/mind/emotions to gain true health.
you can get adrenal test in post on thyroid uk. I have ordered my new test-it is salivia traced.
stay positive and you have to really become your own expert on your own health
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Any patients of Dr S out there who did not originally have Hypo diagnosis but something else. eg M.E/CFS
