ME Cfs ???

Hi I was sick with whooping cough 3 years ago have daily head aches fatigue joint muscle pain brain fog irregublar heart rate, the list goes on.

Specialist initially thought I had. Addison's was on steroids for 12 months but symptoms were not much better, so was weaned off.

I also get swollen glands.

I was diagnosed with Cfs years ago, but nothing like i have been last 3 years. I can't wake up in the morning when I do I'm exhausted, can't stand up

It makes me feel really ill so I go back to bed for a couple more hrs until I can get up. The fatigue most days gets better the later the day goes. I crave salt and sweet foods.

Can anybody relate? I'm at a loss who to ask for help now my GP is useless. Thanks

Forgot to say I also have trouble sleeping at night.

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61 Replies

  • Hello,

    Has your GP carried out any tests for you?

    It might be worth asking him to do all of these from this page of the main Thyroid UK site i.e. B12, folate, ferritin, Vitamin D and intracellular magnesium, along with ALL of the available thyroid tests:

    Once you have these results post them on here with their reference ranges and you will have lots of people comment on them.

    There are other things that can be followed up too if these are not the answer for you.

    Jane x

  • Thanks I have had loads of test done, thyroid was done.

    I am animic most of the time. Just had a test done for celiac disease waiting results next wk. I will post my results. Thanks

  • If your aneamic most of the time whats your gp done about it

    because low ferritin and folate is the first symptom of hashimotos and must be aggressively treated before any thyroid meds will work

  • I'm on iron tablets and vitamin c, awaiting celiac blood results to come back. In one of my tests anti reticulin was positive, erythrocyte sedimentation rate was above high ref, so this was prob related to anemia. Monocyte count was also above high ref. not sure what that is immune system?

  • Hi just want to say that your post sounds like me! I was diagnosed with cfs 2 years ago, but am sure that it is a thyroid problem. I am exhausted and have no stamina and have put on a lot of weight. I too feel better as the day goes on and suffer with insomnia. I Am battling with the doctors to find out what is wrong with me!

    Have you had your thyroid levels checked?

  • So sorry your ill also. I have had my thyroid tested it's ok that's what the said.

    I am always animic just had test for celiac so will find out soon. Hope we find an answers, what tests have you had?

  • Hi have had every test going and they are all normal, but from what I am reading on here normal does not always mean optimal! I'm sure I have a thyroid problem...just got to prove it. My TSH is rising and my T4 and T3 are low. X

  • Mini. Tsh rising and t4 low and t3 low=hypothyroid. What the hell are they playing at not treating you

  • My thoughts exactly! I have seen 4 Gps who have told me that my thyroid is fine and not causing my symptoms. They say it is depression or CFS. One told me to forget I was ill and get in with my life as positive mental attitude would cure me.....have got an appointment tomorrow to try again. Thanks for your help.

  • Have they tested for thyroid abtibodies ?

  • I had them tested last week through Blue a Horizon and they were negative.

  • Caradognorth. Ask what your thyroid results numbers are ...i bet your hypothyroid

  • Hi, I know nothing about the blood results, so anything that might help me would be helpful thank you. My results are ft4 13.9 ft3 4.6 TSH 0.77

    Ft4 14.3 TSH 0.72

    TF4 16.4. Ft3 5.7 TSH 1.9

    Thanks again

  • Technically on those results your ok and no doctor would dream of treating you.....problem is no one knows what they were when you were well

    In your shoes i guess i would get hold of some ndt or thyroxine. Via the safe sources on the web and try self medicating

  • Antibodies were negative, thanks I will try that.

  • I eat 1000 cals a day no more or I put weight on, hardly eat carbs, life is hard

  • Hi both your posts have described me. I got diagnosed with ME over 7 years ago, still ill with all symptoms, but I know it is my thyroid... still battling to get help and am now paying privately. I was pleased to get the diagnosis at first as I just wanted to know what was wrong but now when I have any other problems "they" says its just my ME. I know this is not the only problem. I have all the symptoms listed on thyroid uk for under active thyroid bar 3! Good luck with your journey x

  • Interesting as I also had whooping cough 4 years ago and I was already hypothyroid AND diagnosed with ME/CFS but it gave me a bad ME relapse, and I have never been able to get back to the level of function I was at before.

    My symptoms were not as bad as yours though, but I did get an adrenal fatigue test done and I was affected. I think there's more than that going on though, and have tried many things over the past 4 yrs to get right again. My digestion was especially badly affected and I have to eat a Paleo diet now otherwise I get a lot of pain and problems.

    I have also tried Low Dose Naltrexone, and also T3 only for a year, plus many many supplements. And pacing and rest of course, and giving up work. Most of what I tried was via private Drs though, as mainstream Drs would really not know how to help. I also tried things that I read about on reliable sites online.

    Unlike you, I do have spells where I do improve, and my migraines are mostly gone, so there is a little progress. I am much better in the summer too.

  • Hi there, I Know what your going through, all that you have said could be describing me. Diagnosed 8 years ago with M.E. ( only C.F.S. in England, nowhere else in the world). The only help I got was from Dr. Skinner in Birmingham, sadly he has gone. He put me on Levo then just before he died he intended to swap me onto Armour. All the participants to this community will tell you, if your Dr. only uses blood results then you wont get the right treatment. Now I am self medicating Armour, been on it for just under a week and am already starting to feel better. Hope you find a decent G.P.

  • Hi, My symptoms sound very similar to yours, have been suffering for years but have got worse over time. Any blood tests I had done were always passed as normal by the doctor. I only found out there was potentially a problem with my thyroid when I asked to see my results. After a lot of pestering and a change of doctor who listens, I finally got put on a trial of thyroxine to see if it helps. Only been on it for 10 days so too early to tell.

    There's a belief held by some that many M.E/Chronic fatigue sufferers have a free T4 level of 12 or below. There is also a theory some believe that M.E/CFS only came about 6 years after the TSH test came into existence in the 70's prior to this people would have been treated/diagnosed hypothyroidism.

    It's very frustrating as many GP's are reluctant to treat the symptoms and place too much emphasis on treating the blood tests. That's fine if it was a precise science but it is not. I find the ranges very dubious indeed, everyone is different so what suits one patient may not suit another. In the NHS there is no such thing as optimum levels or symptom relief. If you fall within their range your "normal" and in my case if you fall outside the normal range your told your normal as well! Is a joke in my honest opinion.

    It's not just some Gp's, I've had an experience with a "Consultant". I was told my results were fine, that my thyroid test had been done to death, that I've had this for a long time, that I'd probably never get down to the bottom of it but there was a support group and had I heard of it. Oh please and they get paid for this? Am sure if they were paid on results many would treat patients differently.

    I see a Naturopath who is really good, he's very experienced, is very thorough, listens to you and treats the symptoms and uses the test results as a guide. How it should be in my opinion. He's the one who suggested I go on a monitored trial of thyroxine after he would have expected more of an improvement in my symptoms with the supplements I had been taking.

    It's a frustrating journey you feel you're battling the NHS just as much as the illness at times, sadly you really have to keep pushing to get the answers.

  • Sounds just like my story! I am still battling x

  • Me too , no energy to write,a post even :/

  • How interesting. I was diagnosed with CFS 11 years ago. Have many symptoms of hypothyroidism and have always been told tests are normal. Have just recently discovered that normal may not give a true picture so paid for private tests which show TSH 3.5 and Free T4 11. Am now trying to get treatment.

  • Hi do you know what the normal ranges are for the T3 T4 TSH are thanks

  • It varies between labs. My tests above are TSH 0.27-4.2 and free T4 12-22.

  • These were my readings tf4 13.9 ft3 4.6 TSH 0.77mU/L

  • Have you looked at the Signs and Symptoms on Thyroid UK website. Also lots of information to help you understand the complexities of the problems with thyroid ! Your Thyroid is not producing sufficient T4 - even without the ranges given - I am guessing it is on the floor. Hope you manage to get treatment. Have you considered having your tests done privately - again the website of Thyroid UK will be able to help - the information is there....

  • Thanks I will have a look had no idea mine was low.

  • Yes the problem with ranges - usually around 10 - 22 - ( that is an estimate ) is that docs seem happy if you are in the range - when you should be at the top. Think of your body as a car - the T4 is the petrol in the tank - the more you have the further you can drive ! The T4 then has to convert into the ACTIVE hormone T3 - needed in every cell of the body - mostly the brain - then the gut and so on ! So not enough T4 then it is obvious you will have low T3 which is not good. Please read the

  • Fixit. You are HYPOTHYROID with those results demand thyroid antibodies, ferritin and folate get the figures and post back

  • Never never accept "normal " from any doctor or endo

    you need the exact figures and tests and reference ranges particularily for ferritin and folate along with tsh and free t4

  • Thanks I'm still trying to figure it all out myself GP consultants are all useless

  • I've said this several times before, I know. In my opinion there is no such thing as ME/CFS. It is simply used as a bogus diagnosis to ensure that the doctor has to offer no treatment and no further tests. Sadly borne out by all the stories here. Not one of the people "diagnosed" with ME/CFS has been done so by a doctor who could offer a test to prove the diagnosis nor any treatment to improve the patient's health.

    I now have my own website,

    This site is my own experience of being ill for 38 years. Never diagnosed until I decided around 2 years ago that I had to take matters into my own hands.

    My site is firmly aimed at debunking the ME/CFS myth. There is no such thing. Most sufferers have undiagnosed thyroid/adrenal/auto-immune problems. Others have something such as Lyme disease. Some have something totally different. The point is that for everyone there IS a diagnosis, but it requires, time, thought and testing. Most doctors refuse the testing and appear incapable of the level of thought required.

  • To say that there is no such thing as ME and that it is a myth is an insult. An insult to people with ME, and an insult to those who have died from the condition. Such a view simply shows ignorance about the condition.

    A lot of the confusion is no doubt due to the mis-information about ME spread by the media, as well as the use of the term CFS, which has become something of a “rag bag” diagnosis for anyone with “fatigue”. But CFS is not the same as ME. ME is not simply fatigue and feeling tired all the time. ME is a debilitating, acquired, neurological condition which has been listed as such by the World Health Organisation for over 40 years. In reality ME is a multi-system failure. Yes, many people with ME do have thyroid / adrenal problems – which are often missed – but they are part of the illness, not the whole story.

    I would suggest you read Melvin Ramsay’s book Myalgic Encephalomyelitis and Postviral Fatigue States: The saga of Royal Free disease

    Please watch the film Voices from the Shadows -

    Please learn something of the history of ME, what it actually is -

    Please read some of the articles by Prof Malcolm Hooper and Margaret Williams -

    Please contact the 25% ME group, the support charity for those with severe ME -

    Please look up Invest in ME and the encouraging news about research involving treating ME with the cancer drug Rituximab -

    Please look up the Nightingale Foundation and read some stuff by Dr Byron Hyde -


  • Thankyou rosetrees, I couldn't have put it better myself-hip-hip-hooray for some common sense. A so called m.e.sufferer

  • You're welcome jammidodger3. Debunking the myth and attempting to get people proper diagnosis and treatment is becoming my mission. 38 years of being dismissed and having my life ruined because it's easier to tell someone they have ME, or tell them there is nothing wrong has turned me into an activist.

  • I know I am covering ground that many contributors have already, I this might add grits to the mill. Yesterday I saw a private Dr. at the request of my bother in-law, who kindly paid for it, as I am on benefits.He thought a second opinion would be interesting. Oh boy!How did this guy get his qualifications?

    He did not examine me in any way, he put Dr.Skinner in the eccentric corner, completely disregarded my body temp readings that I take daily( ave 34 sometimes as low as32C)

    He said the body does funny things when you have M.E.

    He looked on the internet and suggested two sites dealing with M.E. And told me to forget the thyroid.

    I could have strangled him then and there. I asked how come when I was on Levo all my muscle pain went, and a few other symptoms too. He could not answer, but said, and I quote,"I am old enough to remember when Levo was given to fat women to give them a lift". I feel embarrassed about taking my brother in-laws money. Needless to say I will continue with ths Armour and ignore this imbecile.

  • If you can afford it, think about getting an appointment to speak to Dr P, or have a written consultation. They are much cheaper than face to face although I think they may not include free follow ups by letter.

    That private doctor you saw sums up all that is rotten about the diagnosis of ME. No interest in symptoms, no examination, no interest in treatment. As Eagles above eloquently points out, people (mis)diagnosed with ME have died. Died because they were left undiagnosed and untreated until their bodies were so weak they were unable to continue. I have the story of one such person, written by her husband.

  • Hi Rosetrees -just in case you are not aware -Dr P has been very poorly and in hospital- I don't know what the current situation but I doubt he is available for consultation.....

  • I believe he is now home, recovering well and answering the back log of letters that built up. That's why I suggested a phone/written consultation as I don't know how long it might be before he can do face to face consultations again.

  • oooh that's such good news -so glad he is recovering - he is a remarkable man.

  • I am hyper. Some years ago I was continually ill with what I think was an immune problem. I was treated by a Naturopath. Eventually I improved after more than 12 months of sometimes feeling as if I wasn't going to survive the day.

    I feel much like that at the moment.

    I do wonder if even then it was my thyroid.

    I would go to your GP and insist you see a specialist. I have been going to my GP for a long time feeling unwell and told it might be fibromyalgia or just my Parkinsons.

    It was discovered when I went into hospital after a bad reaction to antibiotics. Don't be fobbed off with excuses.

    Keep your chin up.

  • Hi Cicely - having read some of your posts I have wondered if you had the tests done that were suggested by NBD - B12 etc. and what the results were. I apologise if I am intruding - was just interested as I know that the symptoms of B12 Deficiency and PD can be similar. Have you seen the video of the Doctor who was seriously ill with B12 deficiency and they thought it was a degenerative brain illness. It's somewhere on that website ! Hope the link works - sorry if it doesn't !

    Hope you are feeling better soon......

    [Admin corrected link...]

  • sorry still don't think it works !

    [Admin corrected this link as well...]

  • It's Marz :-)

    [Admin says: Phew!!!]

  • ...and Marz said - if at first you don't succeed - try try again !! Thank you Everyone ! :-)

  • I suspect this is why some "ME" sufferers believe they have a neurological illness and why, magically, those same sufferers see improvement if they have B12 injections.

  • ME is a neurological illness. Fact. Therefore people with ME (and I’m not talking about “fatigue”) have a neurological illness. Fact.

    I have been ill for over 20 years, severely affected for nearly 15 years. I have not seen any improvement, magical or otherwise, as a result of Vitamin B12 injections.

  • I think the point is one of misdiagnosis, rather than the existence or otherwise of any medical condition. Therefore some people will have ME, others will have an array of other illnesses that have not been looked for or diagnosed.

    I have a friend with ME. After urging her to get copies of her blood test results she discovered B12, folate and ferritin on the floor for the whole time on the printout (about 7 years). Not even in range so doctor didn't have that excuse. And in that whole time she had no treatment offered for these 3 things because "it's just your ME" she was repeatedly told.

    She's now finally fought for the right treatment, and I hope and pray it helps her.

    And as long as the NICE guidelines on ME continue to say do not test for B12 unless there is a macrocytosis, and as long as we have serum B12 as the diagnostic tool when it is tested, you will continue to get people with B12 deficiency diagnosed with the wrong condition.

    I hope you've tried all the different types of injectable B12 (cyano, hydroxo, methyl) at a frequency of every other day (plus co-factors), because it is often a side factor to whatever else is going on, even if it's not the main event.


  • Hi thanks for your post, I don't have the readings of my b12 but they say it's normal, I have low iron which hardly gets better at all.

  • Thanks for your comment, it's hard isn't it. Doctor think they are gods

  • Thanks, I feel like I'm being fobbed off.

  • I can relate exactly to what you are saying Caradognorth! Mine was a mystery virus in 2008, then diagnosed with M.E. when I never recovered. I also feel slightly better later in the day, the fatigue is crippling and I also crave salty/sweet foods. At one point I was bed bound, very ill indeed.

    I seem to have every known symptom of Hypothyroidism, and was diagnosed by Dr Skinner. He mentioned something about M.E. becoming fashionable when thyroid testing was changed some time ago. He also told me that certain viruses attack the thyroid gland and 'kill it'.

    Although I have never been completely healthy, even as a child, I do not believe I have what they call M.E. and Dr Skinner did not believe it either - all my history and symptoms point to a faulty thyroid, although my bloods don't funny enough! I started off on Levothyroxine with Dr Skinner, and now on my own I have just started taking Armour, which I think was where my treatment was going anyway just before Dr Skinner passed.

    I also take LDN still, as I started that when the brainwashing was having full effect and I thought M.E. was the issue. I get that from a private doctor in Glasgow and take it still as it is helpful in reducing inflammation.

    An interesting point to make is that I was referred to an M.E. clinic in 2010 and the fantastic doctor there spent some time with me and concluded in her opinion that it was not M.E. and further testing was required, to which my GP was furious. I got a chest x-ray and a blood test and told again it was M.E.! The silly Neurologist would confirmed the original diagnosis of M.E. in 2008 simply spoke to me and asked me about my relationship with my Mother!! Outrageous I think.

    Anyway, I can relate to what other people are saying on this thread and we seem to have a lot in common. I wish Dr Skinner was still here because he had seen so many people misdiagnosed and he knew what was going on.

    I suppose for me, only time will tell what is going when I have been down every avenue and tried everything as being told I have M.E. with no care or proper treatment is not an option. Being told by medics to stop bothering them because there is nothing they can do is sick, if you pardon the pun. The journey continues....... x

  • that's awful catsndogs. Did Dr Skinner turn it around?

    Yet when you are constantly told you have ME/CFS - you think it must be so (who dares argue with a doc? or several) but I didn't accept it as I knew (& from friends) there was no treatment anyway (so what's the point esp. after half my thyroid out - bit of a clue Sherlock?)

    I've seen the debate a few times - and poll - there is no need for those to get upset - it is not that members are saying the symptoms don't exist they are questioning the actual category of 'disease' & lack of treatment - I asked my psych nurse friend if depression was a symptom or a disease - she said 'it starts as a symptom then progresses to a disease' - so IMHO find the cause of the symptom & prevent the disease! (simplified I know).

    What are the tests for ME? I thought none until someone I know had a 'buspirone' test - and later diagnosed with ME (patient was just happy that something 'turned up' & not imagined). Anytone else heard of this? J :D

  • Hi and thank you for your reply, I also was bed ridden for months it got to the stage I was sleeping all the time, couldn't open my eyes in the end, they put me on hydrocortisone and told me I had Addison's, but they never tested me, I had a ACTH test some months before so I assumed they were going off that, then I did get better got up in the mornings, but was never great, they said I didn't react to the steroids as I should have, 12 months later was weaned off, which was hell! But now I'm back to not being able to function at all can't get up until 1-2 pm just feeling awful all the time.

    The endo I had was blaming it on me waking from my sleep and not being able to get back to sleep, I don't believe him as I was fine before 3 years ago.

    I feel like they have had enough of trying to figure me out :(

  • I was also diagnosed with CFS/ME about 10years ago by a NHS Professor who specialized in it. I later on develop formal hypothyroidism. The Professor said it was a consequence caused by the disease.

    I saw Dr Skinner -he believed that it was hypothyroidism that had caused my illness. I became well with good treatment of a NDT, B12 sublingual and using the Circadian Method to support my adrenal. I personally do think that the reliance on blood tests and not looking at the patient for signs and symptoms, alongside incredibly wide reference ranges for certainly hypothyroidism and b12 ( and are there other conditions with similar wide referenced ranged blood tests?) has caused so much suffering and unnecessary long term illness that is a completely outrage.

    I also completely understand how people with severe ME ( and CFS is officially the same label in the Nice guidelines at least) must feel when they feel so ill with no hope of recovery and they hear their condition being denounced on this post. I think we are looking at very complex issues and true ME was originally linked to a terrible virus that basically comotised ( excuse spelling!) some people over night. This was why Dr Skinner was asked to be involved as he was a trained Virologist.

    The current diagnosis of CFS/ME means that it is open to poor diagnosis and this is what has happened. I believe although i was treated by a well known Professor I was actually one of those people. I would not dare as go as far as to say it does not exist at all.

    People wit h ME/CFS have been treated extremely badly by the press, the NHS in past, the dept of works and pensions and now Social Services/ benefits. So may I put a plea out that we don't do the same to this really poorly group of people who have enough suffering. We all know only too well how it feels not to be listened by our own medical professions -lets not do the same to those of us on this site with ME/CFS and those who may read the post in a search engine if it is not locked.

  • Well said x

  • Hello,

    My name is Debbie and I certainly understand what you are talking about. I have had Fibro and CFS along with many other things wrong with me, and the mornings are usually worse for me and others I have talked to. I am planning on asking my doctor for something to help with the fatigue because it is so bad I don't want to do anything, I have to make myself get up and get started. Fibromyalgia alone is something that few people understand even family members which makes it harder. Fortunately I have a very good pain management doctor who understands fibro and even with everything I am on I still have an average of 7-9 on the pain scale, she wants to increase my medicines but I don't want to do that unless I have no choice because I know it will get worse and if its all increased I have no other options. I wish you the best of luck hun because only those who have it truly understand what we all go through. I don't have flare ups mine is constant and has increased in pain and fatigue over the 17 year period of dealing with it. If you ever need to talk just let me know, sometimes having someone to listen that has all of it makes it easier, because talking to those who do not have it cant understand what we go through on a daily basis.

    Best wishes and Gentle hugs


  • Oh where have i heard that crap from so many times

    ME/CFS is quite simply a doctors excuse for failing to diagnose hypothyroid/Hashimotos

    you need tests for


    Free T4

    Free T3



    Thyroid Antibodies

    DO NOT LET YOUR GP off the hook or accept only TSH test you need exactly the tests above

    If you have Central Hypothyroid your TSH will be low and thats why so many patients get missed

    NHS labs often will only do TSH and ignore the possibility of central /2ndary hypothyroid

    Tell your GP to write on the lab request ??????????????central hypothyroid

    when you get the results post them here

  • Oh where have i heard that crap from so many times

    ME/CFS is quite simply a doctors excuse for failing to diagnose hypothyroid/Hashimotos

    you need tests for


    Free T4

    Free T3



    Thyroid Antibodies

    DO NOT LET YOUR GP off the hook or accept only TSH test you need exactly the tests above

    If you have Central Hypothyroid your TSH will be low and thats why so many patients get missed

    NHS labs often will only do TSH and ignore the possibility of central /2ndary hypothyroid

    Tell your GP to write on the lab request ??????????????central hypothyroid

    when you get the results post them here

  • I was diagnosed with CFS three times (once by my GP and twice by consultants). At that time my vitamin D was 10 (>50), my ferritin was 16 (15-150), my B12 was below the magic 500, my TSH was rising and my FT4 and FT3 falling, although all thyroid function tests were within range.

    Ten years after I first went to my GP with what I now know to be thyroid related symptoms, I have been on thyroxine for a year and am pretty much recovered, but if it had not been for this site (and others) I am sure I would have been bed bound by now.

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