1. Community
  2. Brain and nerves
  3. Chronic Fatigue Syndrome

Misdiagnosis?

Posted , 4 users are following.

bb62633
bb62633

Hi, I was wondering if anyone has been diagnosed with CFS/ME and then it turned out that doctors had missed something? My daughter is 15 and has been ill for over 2 years - we had to take her out of school last year as she wasn't well enough to go.

​She became ill just after a virus and starting her periods. She has always been thin with not much appetite. Over the two years her iron levels have gone from being in the normal range to being anaemic, her B12 levels are going down (although normal). She's always had stomach aches, excess wind, indigesttion, diarrhoea, constipation, hemorroids, mouth ulcers etc. She has seen paediatricians, CFS specialists, rheumatologist, and countless GPs and has been told she has ME and IBS.

​Just recently her C reactive protein came back as slightly high (it was a year since they last tested it) so they did a faecal calprotectin test (simple stool sample) which has come back high - showing inflammation in her bowel.

I'm now wondering if they've missed something and she's got something more serious? I've had to fight so much to get her the right help and will be so upset if she in fact has something they should have found a year ago.

​She's going to see a gastroenterologist on Monday so hopefully we'll get some answers.

0 likes, 17 replies

17 Replies

Prev
  • sally19402
    sally19402 bb62633

    Posted

    Hi, I am a Kiwi who has suffered chronic fatigue symptoms since my daughter was born 24 years ago. They have worsened with menopause. I thought I had found my answer when my B 12 was found low, but supplementation didn't help. Then my thyroid functions changed to abnormal, with thyroid antibodies. I started on levothyroxine a year ago and my symptoms got worse, more brain fog, more fatigue and more joint pain. After researching on the net I discovered that some genetic deficiency of deiodinase enzymes exists in some people, and can be turned on by pregnancy or viral illness. My Mum developed ME in her fifties before me, so this seemed a possibility. This causes inadequate conversion of thyroxine into the active hormone T3, blood thyroid functions can appear normal. Porcine thyroid extract being a good treatment. I hunted for a GP who would prescribe this and started six weeks ago. My brain fog cleared immediately, my joints stopped aching within a week and my energy levels are improving in leaps and bounds. I wonder how many people have this condition. There is a genetic test for these genes now available in UK (google deiodinase genetic test). 
Back to top
Prev

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.