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CFS diagnosis help

Posted , 9 users are following.

lindseyae9
lindseyae9

My doctor is suspecting that I have CFS and for part of the diagnosis is referring me to Infectious Diseases & Tropical Medicine specialist.... Is this normal routine?

0 likes, 19 replies

19 Replies

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  • olivetree
    olivetree lindseyae9

    Posted

    Hi Lindseyae

    I think it is normal practice for GP's to try and eliminate all other possible causes for your symptoms before they will diagnose CFS/ME.  Your doctor is probably doing this also. Unfortunately, this can become quite a lengthy process of tests and eliminations. Only if symptoms continue without other explaination will they normally refer you on to a specialist CFS/ME clinic.

    I hope you soon get your diagnosis and the right support.

     

    • lindseyae9
      lindseyae9 olivetree

      Posted

      thankyou Olivetree! Seeing 'Infectious diseases' on my referral form was quite daunting when I thought I was going straight to see a CFS/ME specialist. 
  • david59662
    david59662 lindseyae9

    Posted

    Hi Lindsey, it is standard practise. I actually hope the I.D doctor finds something for you, you can be treated and be well.
  • sylvia17461
    sylvia17461 lindseyae9

    Posted

    Hi Lindsey don't want to put a downer on things but I had many many tests before I was sent to the tropical disease specialist especially as I had been in Saudi arabia during the gulf war, eliminated every thing connected to my symptoms and still got it wrong, !! "Diagnosed "with CFS told to read up on it and just live with it ! I did , not easy but years down the line proven diagnosis of hashimotos disease ! All thyroid tests came back normal but I had never been tested for autoimmune disease which I knew nothing about just believe doctors when they said every test to do with thyroid had been done.. My advice , ask for autoantibodies  ttests IF you have nt had them . I was prescribed thyroxine and immediately felt 50/60%  better I am not 100% well but so grateful for the improvement. This is a long story cut short . good luck 
    • david59662
      david59662 sylvia17461

      Posted

      Hi Sylvia, i should get my thyroid anti-body results this week as well as reverse T3. Maybe i'll get an answer.
    • caitlin39841
      caitlin39841 sylvia17461

      Posted

      hi Sylvia. plsd. to hear you've had the proper tests completed & that y are much improved. exactly how did they come to the HM diagnois i.e. which tests?

      with thanks

      Caitlin.

  • sylvia17461
    sylvia17461 lindseyae9

    Posted

    I do hope so David having a definite diagnosis fpr any illness is half the battle  you know where you stand and doctors can start the right treatment or hopefully cure. The ME/CFS diagnosis is the elimination of all other diseases and that is the difficulty how can we be sure all have been covered ! We take the doctors word and I am sure most of them are doing their best but GPs can't be expected to know every thing about every illness only a little about many! Good luck I will keep an eye on here to se how you're doing 

     

    • david59662
      david59662 sylvia17461

      Posted

      So true, Sylvia, my GP has been supeb ! So far for me i've spent thousands on private tests outwith the NHS and not much coming back, chronic fatigue screen did show low mitochondiral/cellular energy production, not in the red but just above it. Mirroring how i feel. Not what you'd expect to see from an athletic individual. Adrenal hormone DHEA was low, these are two small clues to the CFS puzzle for me. Thyroid will add more pieces to the puzzle.
  • GeorgiaS
    GeorgiaS lindseyae9

    Posted

    It wasn't 10 years ago when I got it. The protocol then was to prescribe antidepressants which I refused. Because they thought fatigue was caused by depression.

    They're using newly diagnosed people as guinea pigs because there's some research going on and doctors are told what to do so yes I suspect so. Don't expect a cure other than that which you find for yourself but you may be helping us all because more research needs to be done.

    Just don't take any funny pills they might try to start giving us all!

    • GeorgiaS
      GeorgiaS

      Posted

      Why can't we edit??? It was 1o years ago when I got it.
  • sylvia17461
    sylvia17461 lindseyae9

    Posted

    Hi Caitlin the anti-thyroid antibodies tests are . Thyroid peroxidase anti body . And anti-thyroglobulin anti body test . Low free T4 levels could point to a problem even if TSH results are normal! ! I also had an ultrasound on thyroid which confirmed the hashimotos disease , the result was very small inflamed and definitely thyroiditis . my endo said this was the best way to confirm diagnosis. Hope this helps , good luck 
    • caitlin39841
      caitlin39841 sylvia17461

      Posted

      hi Sylia. thank u indeed - a most informative post. did the GP do the antibody tests? how did u manage to get referred to a consultant i.e. did u have to push/nudge the GP? and did u have all the other HM symptoms /symptom picture as described in the medical literature?

      it's been suggested that i may have HM disease but i don't have the excess weight & eye symptoms, but i do have fluid retention of unknown cause?

      with thanks in advance.

      Caitlin.

    • sylvia17461
      sylvia17461 caitlin39841

      Posted

      Caitlin sounds as tho you ve had a hard time convincing doctors how ill you feel I've been there many times but  this time I made my mind up I would not budge out of the surgery until my GP ( who was new to me) did the blood tests and surprise she actually did as I asked . As it turned out the lab said they would not do them so my GP made an appointment for an ultrasound   On my thyroid and this confirmed a hashimotos diagnosis I then saw an endo who did the blood tests plus a few others and now he is treating me . This is a long story cut very short 19 years , i hope it helps you to be a bit pushy with your doctor at least you have some info to confront him with !! Good luck
    • caitlin39841
      caitlin39841 sylvia17461

      Posted

      sylvia, that u so much. u astutely intuited re the uphill struggle with the medics. well done on ur perseverance & courage. it's infectious. i shall be more assertive next visit with the GP. i'll keep your positve outcome in the front of my mind whilst there.

      hope u continue to make good progress.

      Caitlin.

    • sylvia17461
      sylvia17461 caitlin39841

      Posted

      It's been a while since you posted just wondering if you have had any progress with your health issues are you any further forward with an answer??  I take it Hashi has been eliminated .? How are you feeling now any better ? Sylvia 
    • caitlin39841
      caitlin39841 sylvia17461

      Posted

      hi Sylvia. lovely to hear from you. hope you continue to make progress. how are things with you post diagnosis & treatment? yes, thank you i'm further forward. the b12 that i was on for deficiency started to kick in as soon as i took the correct form of Folate. immediately all CFS/ME symptoms measurably improved. i haven't had the Hashi test, but have had my Consultant appoinment escalated by my GP. it took assertiveness to ask for it, but she responded in the affirmative. still, i have to say the GP 's is my least favorite place to have to visit, but needs must sometimes????

      Caitlin.

    • sylvia17461
      sylvia17461 caitlin39841

      Posted

      Hi Caitlin good to hear you ve had some relief from symptoms , vit b12 does make a difference to health, my mum had to have the injections for quite some time and the difference in her , went from no energy and dizziness to we couldn't hold her down. I am doing quite well but hoping for more improvement , just started on a trial of the T3 hormone , which is the active one if the T4 isn't converting to it it makes little difference, so fingers crossed. You seem to be more assertive with your GP I ve found over the years it's the best way some doctors I have seen are just rude or disinterested . Good luck with your consultant appointment I will keep an eye  on this site to see the outcome.sylvia 
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