cfs/me discussion

[hamble99b]

I answered [with this message] some comments about ME/CFS where some people felt mis-diagnosed and angry at their gp's dis-interest in finding the correct diagnoses.

this led to some people questioning the validity of ME/CFS.

this upset the people correctly diagnosed wih ME/CFS.

I sent this reply stating my thoughts, but as these messages are days old, decided to blog them here:-

I have a friend who, has been properly diagnosed with me/cfs. It's an awful debilitating condition .

I have met many people on different forums with similar conditions to mine and they report that their gp/consultant doesn't listen to new symptoms or worries. Simply dismissing them, for example, "oh that's just your arthritis" Probably if a big toe fell off, they'd get the same response!

It is very frustrating not to be listened to.

The written word is a cold medium and mis-understandings occur.

We all have one thing in common on here. Thyroid problems affecting our heath which affects us in many ways - physically; mentally; emotionally and socially.

therefore when people come on here and read another's personal opinion about their own condition, it feels like they, and the suffering they endure, are being attacked or dismissed, and not being supported, understood, or respected - the aims of forums like this.

but we also do need this forum to feel free to rant about how we feel, how we are treated, and need to feel listened to, whilst respecting others feelings.

I hope thatthse who feel mis-diagnosed find dr's who will listen and find the right treatment.

I found it frightening when I had all these symptoms and no answers.

I also was pleased to read recently that many main city hospitals are moving towards a " person centred multi-clinic approach" where all clinics share info & treatment for a patient. this would end having the same tests for every clinic plus one or two specialised ones, now they can ask for ones outside their remit and refer patents onto another clinic without long delays.

gentle hugs to all (( ))

sandra.

[greygoose]

I'm not quite sure what you're saying here, Sandra. Are you saying 'cfs is a real disease and don't try and tell me that it's actually under-treated thyroid'?

I've never seen anyone on this site belittle or deride anyone else's symptoms. That's not what people here do. And if they say that a lot of research has proved that cfs and fibromyaligia (don't know anything about ms, personally) are in fact under-treated hypo, they are doing it in order to give that person another line of research, a new hope of getting well one day. Because if you cling to the diagnosis of cfs and fibro, for which there are no treatments, you don't have much hope of ever feeling well.

It is my firm believe that if you accept a diagnosis of cfs or fibro you are shooting yourself in the foot, because doctors are never going to look any further for a solution. They are going to rub their little hands together saying that's another case 'solved', put their feet up and rake in their wages at the end of the month, whilst you go on suffering. And it's not just you that is going to suffer, but all the people that come after you with the same symptoms. These new 'diseases', which have only been around since the sixties when they introduced synthetic T4 and the TSH test, are already becoming ensconced in the public imagination. And it's only going to get worse. In the end, no-one will be treated correctly for thyroid. But if you put your foot down and said 'no! I'm not settling for that, I want my thyroid explored and treated', you have a much better chance of getting back to normal.

That's all anyone is saying. No-one is saying cfs and fibro don't exist per se, they are saying that they are not 'diseases', they are 'syndromes', a collection of symptoms. You can't be diagnosed with a 'symptom', it isn't logical. If you went to the doctor's with a cold, you wouldn't be happy if he diagnosed you with a sneeze, would you. It's the doctors job to find out what these collections of symptoms are symptoms of, not just label someone with whatever he feels like on that particular day. But he's not going to do his job if everyone is quite happy to be labeled with an obscur, untreatable condition called... whatever.

I'm sorry if this upsets or offends anyone, that is not my intention. Whether we call our condition cfs or hypo, were all in this together and we ought to fight on the same side, not divide up into clans called fibro or ibs.

Lots of hugs, and best wishes, Grey

[muddywaters in reply to greygoose]

Hey Grey - I have suffered from thyroid issues for years but now I think I have CFS which stems from being ill for such a long time - it has been a difficult slog but I don't think it is my thyroid anymore and I am happy with my treatment for that now - I am looking to get help from a CFS/ME clinic with managing my bouts of fatigue/ muscle pain etc as good management can really help improve things. Also my mum suffered from ME when I was little and she is fine now, it can get better and I know someone else who suffered from ME/CFS for a good few years and is now better due to he help he got with managing it. I am not saying that they are not closely connected and sometimes misdiagnosed but I don't think that everyone with CFS has undiagnosed thyroid problems. x

[hamble99b in reply to greygoose]

hi Grey, if you read it again I hope you might find that I was trying to offer a balanced observation of how poor a form of communication the written word is,

how mis-diagnosis by lazy doctors affects us,

and how vulnerable we are to someone's words .

my aim was to support everyone's right to their opinion whether I agree or not as long as we do things with respect;

that this forum is here to share how we feel - hurt, frustrated, mistreated as well as happy, sad, alone, or celebrating;

that everyone, feels able to blog, question, and expect respect, support & understanding.

I didn't suggest the under-active thyroid/cfs/me/fibro link. I have no feeling either way even though I answered my own points on the poll.

we are all different.

what I did want to help with was that people can feel hurt by their fears, symptoms, pain, worries seeming to be dismissed by others and especially the medics who are supposed to help & treat us.

If this didn't come across, perhaps I need to re-read and re-word it.

you are right we don't want to divide into clans and that is what I feared was happening in the responses to the poll and hoped my blog would resolve.

Thank you for questioning it, I hope that clears up any mis-understanding, I don't profess to be anyone other than another member of the forum, trying to keep a balance when people are hurt regardless of actual intent or through mis-communicaton by drs or in other's own thoughts & feelings.

hugs to all (( ))

sandra.

[DeniseR in reply to hamble99b]

Hi Sandra

I understand what you are trying to say and you're right too. I've mentioned to people diagnosed with CFs/Fibro/ME(same as me), that I believe that hypo is the culprit and that treatment for this, although hasn't yet cured me, has helped a lot so far. Yet, I've seen how offended some people can be, when all I'm trying to do is help and give them an option to explore rather than just excepting the useless treatment the docs offer. I don't understand why they don't want to listen or at least consider what I'm say, just continue to go along as they are. I guess everybody deals with these issues differently but we are all in the same boat, often with pretty much the same symptoms and therefore for look out for each other

[greygoose in reply to DeniseR]

Denise, I know exactly what you mean! People get offended as if you've said that they are lying! Nobody doubts their suffering, and because we believe in it we are just trying to help.

There was one woman once, on an American forum, who accused me of being heartless and belittling her pain by saying it was hypo and not fibro, as if hypo was a mere trifle compaired to fibro! I think she'd been seriously misinformed because she was on the thyroid forum because she had hypo but to her that was nothing, the only important thing was her fibro.

I tried again and again to explain to her. She had no treatment for the fibro and was truly suffering. I said that if she upped her levo, or changed to NDT, I was sure she would improve, but all I got was a mouthful for my insensitivity. I still don't understand. x

[greygoose in reply to hamble99b]

Hi Sandra, I'm sorry, but I read your blog several times and I really couldn't work out what you were getting at. I didn't understand that it was in connection with the poll - I haven't been on that since the first day and haven't followed the discussion. If you had mentioned the poll, I would have gone and had a look! lol And I will go an read it all when I have time.

Hugs, Grey x

[hamble99b in reply to greygoose]

oops!

[DeniseR in reply to greygoose]

Well said Grey!

[muddywaters]

I was just in the bath thinking about how one of the most horrible parts of this whole thing is being misunderstood and not being taken seriously by friends, people who don't even really know me, and the medical establishment - the feelings that I get whenever someone says a thoughtless comment and the isolation that goes with it is horrible. I have lost count of the amount of times I’ve questioned myself and the validity of my own illness because of this.

When I start work again I think I am going to change my career as I feel so strongly about tackling stigma, raising awareness and helping people not to feel ashamed or isolated because they are suffering from an illness that other people dismiss (Thyroid, M.E./CFS, mental illness, OCD, or whatever) that I want to do something to change how people see/ treat/ react to these kinds of things.

[greygoose in reply to muddywaters]

Muddywaters, nobody is questioning the validity of your illness. But I was wondering, you say you are satisfied with your thyroid treatment now. Can I ask you why? Can you tell me your blood test results? Have you investigated B12 and iron etc?

If you say you have cfs that means you are still suffering, but is anybody investigating why you are suffering? Or are they just happy to say it's cfs and leave it at that? How can you tell it's cfs? There aren't any blood tests or visible signs that I know of. How do you know that your mother had me? Did she have thyroid tests? There are so many questions here, and nobody is answering them.

You see my concern is that the umbrella of cfs and fibro and all the rest is getting wider and wider and soon nobody is even going to think of investigating anything else, they'll just shrug and say it's... whatever.

Hope you don't mind me asking, Grey

[hamble99b in reply to greygoose]

I think that it's the not knowing that is what makes me worry. the fact seems to me that there is research bing done but not a lot to tell, they are still learning.

did anyone watch "House"? in his search for rare conditions n his patients he often looked for "wegeners" but never found it as its/was very.

I was diagnosed in 1993 with it by an American trained dr. I was relieved to finally have a name for it and hoped my r.a. consltant could fill in the blanks only to be told

"how do I know? you're only the 8th uk patient to be diagnosed! and 89th in the world"

and

"these drugs seem to work, have blood tests and see your gp every 7th day.

report any side effects, keep notes and hopefully you'll improve."

since then it is better understood and treated.

so hopefully they will find out more, train dr's better and tell us!

regards,

sandra.

[hamble99b in reply to hamble99b]

oops bing =being

and it s hould say "very rare"

[Cee123]

Hi, when i was on 250 levothyroxine and was still very symptomatic, my gp wanted to diagnose me with CFS and ME as my thyroid levels were fine and told me that there was not much that could be done. I told him i wanted to try another thyroid medication which he declined as i felt it was too premature to diagnose me with other disorders when i knew my thyroid wasnt right. A few months later after seeing a private doctor i am now on t3 only and most of my symptoms are gone including my aches and pains!!! So for me it was my thyroid not being properly treated.

[hamble99b in reply to Cee123]

My thyroid levels are "very good" according to the tests but I can't get through to the gp & hosp that I feel like I did before been reluctantly given thyroxine when those results were "vg".in the 1980's" my old consultant left, the gp sends the referral, the hosp say no need lels are very good... grrrrrrr!!

[Totoro in reply to Cee123]

When I was on 200mcg levothyroxine (and could not get my GP or endo to prescribe any more, even though my T4 was only half way on reference range) I was told by GP and two endocrinologists that it wasn't my thyroid. It was point blank, no possibility of these many remaining symptoms being my thyroid (as my TSH was almost suppressed).

I managed to get a trial of T3 and managed to see Dr Skinner. Now I'm on mostly T3 and a smaller amount of T4 and may change to T3 only.

I am much, much better than I was on 200mcg thyroxine. The doctor and both those endocrinologists were completely wrong! The doctor did say to me that I'm only well because of my own persistence and that my better health was all down to me. It's so hard to struggle and keep on pushing when you're very ill, both physically and mentally not all there. But all of us must believe in ourselves and our own instincts of what our body is telling us.

As a general point I'll add I do believe in CFS/ME and also that some people are wrongly diagnosed as it too. Some people may in fact be hypothyroid but some have other symptoms that I've never seen listed as hypothyroidism. For instance a young woman passed away due to CFS and was in a documentary I saw. Her mum got an autopsy done and they found she had ganglia on the base of her spine. They don't know what caused them.

Totoro x

[Marz in reply to Totoro]

...the ganglia could well have been Tarlov Cysts - no I hadn't hear of them either until I was diagnosed with them ! Part of the Herpes family apparently.....they grow near the spine and mostly the sacral area....I take VitC with Lyseine.

[greygoose in reply to Totoro]

Just because symptoms aren't listed as being due to hypo, doesn't mean they aren't due to hypo! That's the whole point. Everything and anything can be due to hypo - directly or indirectly.

Thyroid hormones are needed by every single cell in the body. If there isn't enough to go round, certain receptors are shut down, and then you have problems. This can be anywhere in the body, absolutely anywhere.

How can you possibly say that : this symptom is due to hypo, but this one isn't, it's due to CFS. Especially as there isn't even any test for CFS. Nothing about it is logical or scientific.

Grey x

[Hidden in reply to Totoro]

Yes I think grey goose is right. Every single cell in the body metabolises to stay alive and therefore every cell uses thyroid hormone, so it makes sense that any cell anywhere in the body can malfunction if it doesn't get enough t3. The symptoms are in fact limitless, although why some symptoms are more common than others I don't know. Perhaps due to some parts having more receptors as requiring more hormone, so they have more potential to become deficient.

[rosetrees in reply to Totoro]

I suspect the ganglia were nothing to do with ME. But, as she had been "diagnosed" with ME that was used as an excuse not to have to do any further tests to find out what was actually wrong with her.

[tulula59]

As a past CFS sufferer I can sympathise with both offerings here but would like to suggest that no-one should ever be challenged about their own reality regardless of it's detraction from mainstay medicine.

It came like a bolt from the blue for me at 37 without injury or accident. On paper that it was a 'malfunction of the hypothalumus/pituitary axis' and I spent 5 years recovering. It was nothing short of hell trying to get other's to accept it.

After spending 1 year feeling better I was then hit once again with slightly different symptoms that were then diagnosed as Fibromyaliga (not so very different).

At the same time my sudden and exceptional hypermobility was diagnosed as Ehler Danlos Syndrome a genetic life-long connective tissue disorder. Yea, I'd always been very bendy but never had major problems with it. So...... they happily discharged me and sent me on my way 4 years ago.

I have just read a paper that reviews the last 30 years of research on Fibromyalgia and have stuided both ED and CFS/Fibro at great length. I'm an educated person with a simple huge interest in being able to live a 'normal' pain free life which I'm sure all of us here are.

The paper clearly unpicks the theory that an underlying thyroid issue could easily be the foundation for Fibro and therefore CFS and I have now had all the additional symptoms of hypothyriodism to boot.

Personally then, I do believe that these syndromes do totally exist, that there must be a functional problem with the endocrine/immune system to produce the symptoms and that eventually we should consider that accepting an underlying cause for spontaneous ill health is the only way to go.

The paper is:

Inadequate Thyroid Hormone Regulationas the Main Mechanism of Fibromyalgia: A Review of the Evidence. Lowe.J, Yellin J. 2008.

[tulula59 in reply to tulula59]

Just a side note: It does imply that mono treatment with FT4 is unlikely to help up to 50% of hypothyroid patients and that a combination treatment that includes FT3 should be considered.

[hamble99b in reply to tulula59]

thanks, I'll look that up.

[greygoose in reply to tulula59]

Nobody doubts that they exist, tulula, that isn't the problem - and I'm pretty certain that nobody here has ever said they don't exist! The problem is that doctors 'diagnose' people with them as if they are a seperate disease when in fact they are symptoms of other diseases. That means that people thus 'diagnosed' believe they have some weird disease with no treatment and no cure. Whereas, it's possible that the opposite is true. Doctors are giving people no hope, we are trying to restore that hope.

thyroidscience.com/reviews/...

For others that might want to read the paper tulula refers to.

[tulula59 in reply to greygoose]

Absolutely greygoose.

These are diagnosed, in my opinion, as the end point of 'I don't know what else to do with you' from the GP or whoever. And I am happy that they are too often used to relieve the profession from finding out exactly what the problem is.

Biggoted viewpoints from them and lassier faire (sorry about the spelling)attitudes are costing people their dignity and health. And the stigma still goes on in many places.

I wouldn't have a problem telling people that I had CFS or do have Fibro but it would help my sceintific mind settle if I could explain WHY I had/have it.

I do believe that for every reaction there must have been an action and our bodies symptoms are exactly that - outward manifestations of inward imbalances.

Meanwhile for those who have their diagnosis of CFS/Fibro and are happy to accept that as the final place to rest then naturally we champion them too. For we are all individuals with our own mindsets and ideologies.

Long live freedom of thought as well as speech.

[Hidden]

here's what patient.co.uk say.....

patient.co.uk/health/chroni...

There is no test that proves that you have CFS/ME. A doctor will usually diagnose CFS/ME based on your symptoms. Some tests are usually done to rule out other causes of your fatigue or other symptoms. For example, blood tests may be done to rule out anaemia, an underactive thyroid gland, and liver and kidney problems. All these tests are normal in people with CFS/ME.

[escalade in reply to Hidden]

hfme.org/metests.htm

[Hidden in reply to escalade]

Hi Escalade,

thanks for the link - I wonder how many have had all these extensive tests before a diagnosis of ME (I only had a few blood tests & GP suggested CFS/ME).

regarding your question (link below) "are all ME/CFS/Fibro patients low thyroid?"

I very much doubt it, as there can be so many hidden unknown diseases, but worry that folks with ME/CFS don't get anything else investigated.

Perhaps we both agree that not everything shows up in a blood test.

(and I never trust 'normal' anyway - a TSH 5.12 GP still says CFS but if I get out of range & treated then I'm hypo!) J

thyroiduk.healthunlocked.co...

[rosetrees]

I just found this thread and wonder if it was "my fault" that it was started. I'm a newbie here and I posted a few days ago that, in my opinion, "there is no such things as ME". I didn't explain what I meant and so understandably, and quite rightly, some people were upset.

I didn't blame for that and I don't blame them. They were right to be upset. To clarify - I have had "ME" for 37 years. To be more accurate, I was initially told there was nothing wrong with me as no-one had heard of ME then. It's only in the last 15 years that ME has been officially mentioned.

For me, ME has always been used as an excuse by doctors to do nothing. Over the years I have had blood tests when I've been particularly ill. Always the same standard set of tests, so always with the same standard results. Not once in 37 years has any doctor anywhere expressed even a passing interest in finding out what is really wrong with me, or (heinous suggestion) actually tried any form of treatment. I have been ridiculed, shouted out and mainly just dismissed.

6 years ago I keeled over completely. I was working at a "historic house" at the time. One day I did the cleaning in the morning, some office work and then took two tours round the house. 2 days later I was so ill I was unable to even sit up in bed. Would my GP come out? Of course not. A golden opportunity to find out what was wrong was missed and I was abandoned.

I haven't been well (even by my standards) since then - until I was finally told I have an underactive thyroid last October - after once again becoming so ill I didn't even know it was possible to feel that ill. I now have my blood test results and can see that I have had thyroid problems, flagged up by the lab, for at least 5 years - but my surgery didn't see fit to tell me.

My saying is that "ME is not a diagnosis, it's a dismissal". Certainly that's what it has been for me.

I have always believed there was a hormonal element to my problems. Interestingly (to me, but not to my doctor) the opposite happened in the run up to the menopause. My periods stopped for 3 months and I was bouncing around, full of energy. No-one that knew me could believe how well I was. Sadly my periods returned and the effect wore off. When I actually reached the menopause I went downhill rapidly.

What was happening in those 3 months when I was so much better? I don't know, but it has to have been something hormonal - and I think your hormones are part of your endocrine system.

It's my believe that ME is failure of the endocrine system to function correctly. Probably not just thyroid, maybe not even just thyroid/adrenal.

[hamble99b in reply to rosetrees]

hi rosetree, thanks for coming back to this. It must have very frightening to have a gp like that, who is so disinterested, It's bad enough to have to be ill without being ignored. have you seen a consultant? I hope they've at least arranged that.

can I suggest that you post the part about your 3 month break? someone might have had the same.

regards,

sandra.

[hamble99b in reply to hamble99b]

oops!

post as a question

[rosetrees in reply to hamble99b]

I'm holding off asking for a referral to an endo as I have an appointment to see Dr Peatfield at the end of April. Will post the rest as a question. I wonder if it's happened to anyone else.