Victory! It's NOT CFS for HEAVENS sake! - Pernicious Anaemi...

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Victory! It's NOT CFS for HEAVENS sake!

Portia1974
Portia1974

Victory! This may be pertinent to some in this group. Where your GP is quick to slap a label of CFS/ME/Fibro on you and call it job done. These are all diagnoses of exclusion. And in my experience doctors are too quick to use these syndromes as a catch all without first FULLY exploring existing causes of our symptoms. In my case, b12, VitD, iron and folate deficiency. And as of today a diagnosis of hypothyroidism. I recently obtained my medical notes and was horrified to find that a diagnosis of CFS had been put on my record as far back as 2011 and then again after I attended assessment at a specialist service. My issue with that is that everyone viewing my "compaints/symptoms" will view it in the context of that. "You expect fatigue and aches and pains with CFS". My protestations about my deficiencies have fallen on deaf ears for years. I decided not to accept it. I wrote to my GP demanding it be removed. They have not responded. I wrote to the CFS specialist service where I was assessed & while I don't fully agree with their assessment of what WAS the cause of my symptoms....I was freaking overjoyed to get this letter in the post today! Stick that in your pipe and smoke it GP!!!! (Photo of letter in comments).

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Portia1974 Well done for persistence. I have that label on me and of course everytime I see the doctor I am told whatever the problem is at the time it will be worse because of the CFS/ME or it is the CFS/ME. At that time I was also diagnosed as hypothyroid and 2 years ago I asked my GP to test for B12 and vitamin D and I was deficient in both. I am now on 3 monthly B12 jabs and am taking action to increase the injection frequency to see if it will make a difference to my energy levels.

I thought now they had to rule out these deficiencies before referring to CFS/ME service but it wasn't so in 2007 which is why I asked for the tests.

Hi,

"in my experience doctors are too quick to use these syndromes as a catch all without first FULLY exploring existing causes of our symptoms"

Portia1974 , I could not agree more. Took me nearly two decades to find out B12 deficiency was a likely reason for my health problems.

Link about ME/CFS and B12 deficiency

martynhooper.com/2018/02/10...

Oh THAT'S brilliant that he's positioned himself "on the inside"! Clever boy! I have major skepticism around the NICE guidelines for ME/CFS. How can they say, with a diagnosis of exclusion, NOT to routinely test for other possible causes?! ie the actual exclusion part!! It's illogical. And a big part of me is very suspicious that it's worded this way so they DON'T have to test. If they don't have to test, they don't find ANYTHING out and then they don't have to DO anything. It's all like a very nice neat (cheap) little box with a big bow on it that Dr's can put patients in and never have to look at them again; whilst simultaneously meeting targets for diagnosis. No wonder they are so seemingly infatuated with this diagnosis!

Portia1974: Congratulations! Well done for refusing to be pushed into a dead end misdiagnosis!!! They are all keen to use exclusion diagnoses for issues they either have no clue about and could not be bothered to spend time doing proper in-depth investigations (saving money no doubt) or simply they don't really care... Have become very desillusioned with GPs and the medical professionals generally, through experience and much frustration.

Portia1974
Portia1974
in reply to JGBH

Yep. Without doing the exclusion part it seems! So frustrating!

Unfortunately the NICE guidelines for CFS that continue to operate until 2020, once they have been ‘ripped up and started again’ state that once suspected testing stops and patients are denied further testing or care. So it is not a diagnosis of exclusion but falls under part of the Increasing Access to Psycological Therapies and denial of services. If you haven’t read about the many conditions that fall in this category it is very worrying reading especially for those of us that have a number of symptoms that develop slowly and are attributed to other causes.

It is very hard to push for detailed testing read with a logical open mind once CFS has been suggested. For me I have lost 10 years seriously ill with undiagnosed B12D Hashimoto’s hypothyroidism and a number of other issues that required surgury and detailed investigations. These NICE guidelines won’t help you but if we have anything to do with it the next ones might. We all need to fight the assumption that if a doctor believes in a diagnosis that can neither be proved nor services offered to refute, then it is true.

For further reading I suggest the blogs of David Tuller, the MAIMES and GMC complaint pages of DrMyhill, and MEpedia.

Portia1974
Portia1974
in reply to cwill

Totally agree (as you can probably tell!)

Fantastic 😀 I do feel that the NHS, however great in many ways, is lousy at diagnosing chronic conditions, such as b12 deficiency and under active thyroid. I think I would have been heading for the same diagnosis at some point. I've gone from someone who was always on the go, could walk and cycle for miles, to only managing on worst days a few steps.

One GP suggested my shortness of breath/feeling of suffocation was due to anxiety. Fortunately, another GP realised that I don't have a history and referred me to the chest clinic, who has found a problem with my gas exchange. Another GP was so poorly informed about b12 deficiency and didn't realise that any supplementing would affect the blood serum result. I now self inject.

A consultant that I self referred to thought my fatigue and SOB would be helped by HRT. It made it worse as oestrogen blocks thyroid hormone production. Another consultant has now started me on thyroxine but what I'm trying to say with all this moaning is that GPs and consultants seem to quickly jump to conclusions, based sometimes on age, instead of investigating and considering your actual symptoms. So I couldn't agree more!

Good luck with your hypothyroidism treatment. Have you had a full thyroid panel, including your antibodies? I do wonder just how many people have received a CFS/ME diagnosis, when it is thyroid medication and/or b12 that they actually need but the NHS and therefore GPs have yet to learn the basics of b12 deficiency and Hashimoto's disease.

Well done Portia. 🤗🤗

Years ago I too was formerly disgnosed with CFS/ME by a nhs consultant. In reality it was low thyroid functioning that finally met the nhs guidelines of high TSH and was finally put on treatment. In the end I needed ndt to regain my health. I wrote to the consultant asking him to remove the diagnosis of cfs/me. He wrote back saying I definately had it, refused to remove the diagnosis and stated that the hypothyrodism is a consequence of it. Words fail me.....

Well done.

I only went to the GP a few times with my symptoms of breathlessness, fatigue, poor sleep, goitre, total lack of energy in muscles.

Final appointment GP said I was leaving " I expect you've got post viral fatigue" In other words, have a label, I can put that in your notes and please go away !

I've not been to the GP for 18 months, can't see the point. I get more sense from my vet, thank goodness :)

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