Frustrated, not convinced it's CFS.

I went to my doctors again yesterday, first time in several months as I got fed up with blood tests just coming back normal and from the moment I walked in I knew she had come to the conclusion I had CFS. Don't get me wrong she was really supportive about it and offered to refer me to Southend which apparently has a really good CFS service. The thing is that while my symptoms do match those of CFS I'm not convinced that's what it actually is. Once or twice a year for the last couple of years my ferritin levels have gone low and I've had to have iron supplements.

I think what has frustrated me most is the fact that when I mentioned it she just said ferritin was fine last time so I don't need it checked again. (Last time was Oct 2016 and was checked after finishing a course of iron tablets so I should hope it had been fine then!)

I also mentioned concerns about my thyroid and got the response I was expecting there too. They're 'fine' and because my TPO came back negative I'm unlikely to develop problems, last few tests TSH was 4.67 and 3.something (I put the results up safe somewhere and can't remember where lol) old tests show it used to be closer to 1. She did say they could test again in December 'If I wanted' which just felt like she was trying to move me on from the point.

Maybe I'm in denial but I just feel like CFS isn't what's going on for me.

5 Replies

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  • Hi - you are legally entitled to have copies of all your test results. Testing only the TSH is a small part of the story and you also need the FT4 & FT3 tested.

    Low Thyroid is linked to LOW Ferritin - chicken or egg ? When the thyroid produces the storage hormone T4 it needs GOOD levels of Ferritin to convert T4 into the ACTIVE thyroid hormone T3. So I am thinking the T3 will be low. Rarely tested.

    If you would more advice I am happy to help

    You can click onto my name above and can see my journey - only a couple of minutes. Do not accept the CFS diagnosis until everything has been ruled out.

    Your thyroid is beginning to struggle.

    thyroiduk.org

  • Thank you for the reply Marz. I've asked for printouts the last few times I've had blood tests although they've started charging £5 each time which seems rather steep. Since I've not had any luck getting T4 tested I've decided to get bloods done privately now I can afford it. I've just sent off my blood for thyroid plus eleven with Blue Horizons so hopefully I'll get a better idea of what's going on then.

  • Great news :-) Are you on the Thyroid UK forum here ? You can post your results there and people will comment - loads of helpful people and such an active forum. You will receive replies in minutes ....

    I do think 5 GBP's is steep too - sorry no sterling sign as I live in Crete and my keyboard is Greek :-)

  • Yes I'm on that forum too, will post my results once I get them. Thanks again 🙂

  • Will look out for them 😊

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