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How many tests did you have to have before diagnosis?

Discussion in 'General ME/CFS Discussion' started by Jemima37, Jun 26, 2017.

  1. Jemima37

    Jemima37 Senior Member

    I've had over 19 months of chronic fatigue, crashes after exertion (a trip to a park or jist housework causes one or stress, symptoms of fatigue, aches in legs and upper arms on a crash day, weak burning thighs, dizziness lile im walking in water kind of swimmy head, and nausea. My gp last year was pretty useless and branded me depressed. One time he blamed a virus when i didn't have one it was a typical crash for me.

    I had 2 full blood count last year, blood film, glandular fever, nuclear antibodies, kidney and liver function, glucose, Lyme disease, cortisol, crp, bone profile, creatine kinase, hba1c, b12, folate, ferritin... I also had thyroid issues since 2015 which are being treated and within range now. Gp ran the latest sweep of tests as long as my arm 7 months ago and still didn't diagnose me. Branded me.depressed.

    My gp leaves this week and I'm being handed over to someone else. He asked me to write a letter explaining exactly how i feel daily and the extent of my crashes and how I feel. So I wrote a 4 page letter detailing exactly how I feel every day and how as a wife and mother at 37 it's impacted my life greatly. Yes I've become depressed but purely due to the situation . Crashes rule my life and I'm afraid to do anything. Living life just to get through each day best I can so my kids are fed and the minimum housework is done. I'm lucky to hit 3000 steps a day as I rest when the children are in school.

    Today he rang me out of the blue about the letter. We discussed it and he wanted me to discuss daily how I feel and how a craah feels so I did again and he said 'right ok. I still think depression is a big cause of this but it could be chronic fatigue from reading your letter explaining it in detail.'. He then said bur he wanted to rule our more sinister things which set my anxiety racing. I had 2 full blood xounts in march and april this yewe whuxh shoeed my neutrophils were 0.2 under range and lymphocytes 0.8 over range. He referred me to a haemotologist who wants to check the blood himself the first week in July to do a blood film and check the 2 cells out of range himself. Today I asked my gp could this mean cancer and he said it was for the haemotoglist to rule our anything but he was sure it would be ok at my figures. I had out if range neutrophils years ago She to bad acne and my gp back then just monitored me and said it was due to my acne and never referred me. My current gp panics over everything and makes me an anxious wreck.

    I've had to repeat my sodium 5 times since November after it was slightly under on one test bur repeated 9 days later and very good result came back. Yet since then he's made me repeat it every couple of months. He's made me do 3 hba1cs in 7 months yet they always come back normal at 34. He makes me keep repeating things that really aren't an issue. It's exhausting having constant tests and getting no answers.

    Today he said he wanted to repeat all the tests again. Every single test he did 7 months ago. Why??? They were all fine. Glandular fever, etc... He even said hba1c and sodium again which were literally done in the last 2 months. I can understand the haemotologist wanting to check the 2 white cells but why is my gp repeating things constant that don't need repeating. It makes no sense. I asked him if I repeat them do I then get a diagnosis of cfs? He said no they'd then refer me to a general medical doctor who would run the same tests and then decide.

    I tried to explain to him I've developed a serious blood test phobia. I've also developed anxiety and agoraphobia since being this ill and I am sick of being a pin cushion with no answers as to why I'm poorly. So I refused even more bloods for now as they've all been done time and time again in the last year and other than the fbc the haemotologist wants to double check surely everything else is plenty up to date and no need at all to keep testing and not giving me answers.

    I'm now worried sick it's something more sinister after his call but also worried will I have to go through all of this starting again with a new gp as of next week

    Did you have to go through all of this and who diagnosed you?

    Sorry this got long. I'm so upset after today's call.

  2. charles shepherd

    charles shepherd Senior Member

    Sorry to hear about all the problems you are facing with trying to get a diagnosis for your continuing ill health and I hope you will appreciate that as a doctor I cannot offer diagnostic opinions over the internet

    Given all the delay and the uncertainty over what is going wrong with your health, I think you ought to ask your GP if you could be referred to either a good general physician at the local hospital or one of the hospital based ME/CFS clinics/services (assuming that you live in England)

    I have attached some general information on making a diagnosis of ME/CFS from the MEA below

    There is more detailed info in the MEA leaflet on Early and Accurate Diagnosis - this can be downloaded (free item) from the MEA website

    Comprehensive information on all the blood tests can be found in the clinical assessment and diagnosis section of the MEA purple book - which can be sent fee to your GP

    In relation to making a diagnosis of ME/CFS:

    Firstly, it's important to note that doctors do not have a blood test that can confirm the diagnosis of ME/CFS

    So from what you say it sounds as though you ought to ask your GP about having a referral to a hospital-based ME/CFS clinic where any diagnostic uncertainty relating to ME/CFS could be resolved.

    There is a full list of contact details for all the ME/CFS clinics in the UK on the MEA website:


    If there is not a suitable service nearby the Countess of Mar has established through a House of Lords PQ that you can be referred elsewhere to an NHS service/consultant of your choice:


    Obtaining a proper diagnosis is important because if you do actually have ME/CFS this needs to be managed in an appropriate manner. Bad management or no management is not an option

    Having a firm diagnosis (if you do actually have ME/CFS or a post viral fatigue syndrome) will also help in relation to benefits, employment rights etc

    Issues relating to diagnosis and nomenclature (ME, CFS, PVFS) are covered in the series of educational videos that we have done:


    This work was funded by a grant from the Dutch government.

    We have MEA information leaflets covering:

    • activity/energy management and pacing - depending on stage and severity of illness
    • DWP benefits that can be claimed by people who have ME/CFS - as well as leaflets covering individual benefits (eg ESA, PIP)
    • all aspects of employment and occupational health - as ME/CFS is covered by the Disability Discrimination Act and 2010 Equality Act

    MEA literature order form:
    MEA on line shop:

    Please note that good early management of either ME/CFS or a post-viral fatigue syndrome is very important when it comes to reducing the risk of more long term or severe illness - so it is important to obtain obtain good medical advice if it seems possible that you have ME/CFS.

    Regarding DWP benefits

    If you are unable to work due to ill health you should be able to claim ESA.

    If you require help with care and mobility, there is a new DWP benefit called PIP (Personal independence payment).

    We have MEA information leaflets explaining how these two benefits apply to people with ME/CFS and detailed guidance on how to fill in the application forms.

    Here is the link to a copy of our new information leaflet on Early and Accurate Diagnosis of ME/CFS/PVFS:


    Hope this helps….

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
    Jennifer J, trishrhymes and Jemima37 like this.
  3. charles shepherd

    charles shepherd Senior Member

    Re low sodium level on a blood test and ME/CFS:

    Having a low level of sodium in the blood (hyponatraemia in medical jargon) can cause some symptoms that overlap with those of ME/CFS
    These include:
    • Nausea and vomiting
    • Headache
    • Confusion
    • Loss of energy and fatigue
    • Restlessness and irritability
    • Muscle weakness, spasms or cramps
    • Seizures

    So checking electrolyte levels (ie sodium, potassium etc) in the blood is an essential part of the clinical assessment procedure before diagnosing ME/CFS
    And there is some evidence that what is called a sodium ion channelopathy can be a factor in an ME/CFS like illness that follows ciguatera fish poisoning
    More info on this in the Research section of the MEA purple book and here:
    https://toxnet.nlm.nih.gov/cgi-bin/sis/search/a?dbs hsdb:@term @DOCNO 7241

    Equally, low levels of sodium are NOT consistent with a diagnosis of ME/CFS
    Hyponatraemia can be caused by a number of medical conditions - some of which are important in relation to the differential diagnosis of ME/CFS (e.g. Addison's disease and hypothyroidism), So these conditions MUST be excluded if someone with ME/CFS has a low level of sodium in the blood


    Hyponatremia is a common electrolyte abnormality with the potential for significant morbidity and mortality. Endocrine disorders, including adrenal deficiency and hypothyroidism, are uncommon causes of hyponatremia. Primary adrenal insufficiency (i.e. Addison's disease) may well be recognized by clear hall-marks of the disease, such as pigmentation, salt craving, hypotension, and concomitant hyperkalemia. Addison's disease is an important diagnosis not to be missed since the consequences can be grave. On the other hand, hypothyroidism and secondary adrenocortical insufficiency originating from diseases of the hypothalamus and/or pituitary (hypopituitarism) require a high index of suspicion, because the clinical signs can be quite subtle. This review focuses on clinical and pathophysiological aspects of hyponatremia due to endocrine disorders.
    More info on causes and management of low sodium:

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
    Jennifer J likes this.
  4. Jemima37

    Jemima37 Senior Member

    Thank you for your replies Charles.

    I have normal salt levels now. I was 0.1 under range on a test a few months ago. I'm now very much in range.

    I also don't have addisons disease. My corrisol has been tested and was not low.

    I have hypothyroidism and am taking medication for that.

    I understand my gp repeating a test if out of range but it's been back in range on following tests.

    I fully understand why they want to repeat my lymphocytes and neutrophils as they were 4.44 (lymphocytes range was up to 3.65) and neutrophils 1.8 (range 2-7). I am more concerned they're something more sinister.

    Thank you for your replies. Lots of information.

  5. charles shepherd

    charles shepherd Senior Member

    Julie - can I ask where you are in the UK

    This info might help us guide you to a physician with a good understanding of ME/CFS that your GP could refer you to

    Jennifer J and NelliePledge like this.
  6. Jemima37

    Jemima37 Senior Member

    I am near Chester.

    Thank you
  7. ahimsa

    ahimsa Rarely on PR now

    I don't have any specific advice/suggestions for tests or diagnosis. I just wanted to provide some moral support.

    I first got sick in January of 1990. It took me 5 years to get a diagnosis.

    I don't remember all the doctors that I saw or all the tests that I took. But it was a very long struggle.

    It can take a long time to get a diagnosis for a chronic illness--not just for ME but also for many different types of illnesses.

    Wishing you the best of luck! I hope others can provide names of doctors who can help.
    Jennifer J likes this.
  8. Shoshana

    Shoshana Northern USA

    Northern USA
    Julie, I just want to add, that I am sorry you are being asked to repeat those tests, so many times, and that the doctors are not addressing your difficulties, better than they have been. And sooner.

    Of course, anyone would get some depression and phobias, etc, from dealing with so much of that, on top of all of the challenges of parenting, etc.

    It does take many years, sometimes, for the doctors to decide something they don't feel they can prove.
    It is disheartening. I don't blame you for setting some limits for yourself.

    I send my support, and hope you can find some good help.
    Alvin2 likes this.
  9. Alvin2

    Alvin2 If humans were rational...

    I can see where your coming from here. Tell the doc that the repeating of tests is not helping you and eats up energy you need to take care of your family.
    Think of it this way, if new tests come up with something then they will have a basis for treatment and you could get better. :hug:
    If they show nothing then you probably do have ME/CFS which sucks but is not really news to you.
    Shoshana likes this.
  10. TrixieStix

    TrixieStix Senior Member

    @Jemima37 I had to rule out other possible conditions first. I had a brain MRI with contrast to rule out MS given I have some symptoms also seen in MS. I had routine blood tests to rule out vitamin deficiencies, thyroid problems, cortisol levels, etc. I also had blood tests to rule out some autoimmune diseases.

    Then when all that was done and there wasn't any significant abnormalities (I do have very low NK Cell Function as is found in many with ME/CFS) found we settled on ME/CFS as I fit all the criteria. Diagnosis of exclusion. However not ALL my symptoms are due to ME/CFS and I am still in process of figuring out the other issues.
    Last edited: Jul 2, 2017

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