Martyn Hooper's blog post ME/CFS/PA

[helvella]

As so many here have interests in ME/CFS/whatever they call it today, this post over on Pernicious Anaemia Socety, and the blog by Martyn Hooper (founder of the PAS) that it links to, need to be made visible here as well.

Martyn Hooper's blog post ME/CFS/PA

Sleepybunny

Hi,

Thought those of you with a past diagnosis of ME/CFS or those struggling to get a diagnosis even when symptomatic for B12 deficiency might find this interesting.

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

[ Post I stole this from: healthunlocked.com/pasoc/po... ]

[JGBH]

Thanks for this most interesting link Helvella. Too many patients are pushed ito this useless cul-de-sac category of ME/CFS, etc... when doctors are unable to find out the root ause of a problm and/ot cannot be bothered to do further investigatios.

I was recently "diagnosed" (ahahah, should say misdiagosed) with having CFS by yet another useless haematologist and endocrinologist.... which of course I refuse to accept and will ask for such a "diagnosis" to be removed from my medical records and will cancel the appointmeent at the equallly useless CFS clinic to which I have been referred.

[Cariad-y-Mor in reply to JGBH]

Hi JGBH - I was recently referred to our local CFS clinic ( usual story...hashimotos, exhaustion etc etc) . I nearly did not attend feeling it would be a waste of time ...and would give doctors a way out from having to deal with what is actually wrong with me. As it happens I came away from the appointment being told I do not have CFS or ME and the report to my GP states the same thing. 😀

[JGBH in reply to Cariad-y-Mor]

Hi Bernie51 - Well that's unusual, I must say. So were further investigations done and the cause found out? I do hope you're now feeling better. (? )

However I really don't need the CFS clinic to tell me it was a misdiagnosis, I KNOW.... I also know there is something physical and phisiological wrong with me/my health and that is has nothing to do with any so-called CFS ridiculous "box" of misdiagnosed conditions - a cop out for lazy/unconcerned/ignorant doctors. So will pursue for a proper investigation but it should not be that way.

[Cariad-y-Mor in reply to JGBH]

Hello again JGBH . My appointment was only 2 weeks ago and the report arrived this week. It was sent to me - with a copy for my GP.

Like you I didn't need the CFS clinic to tell me I didn't have CFS / ME. I guess in the end I took the gamble that I would be right and would not get stuck with a CFS diagnosis.....which would have meant the doctors would not have to investigate further. As you say a cop out for doctors.

As it is I feel my "gamble" paid off . My GP has now ordered a Full Iron Panel. ( not had one done before). I am now waiting with baited breath to see if the lab will carry out the full panel. The lab here is notorious for not complying with the GP's requests. !!!! So I guess it is watch this space. 😀

[JGBH in reply to Cariad-y-Mor]

Hello Bernie.

Pleased you have been "removed" from that useless "end of line" diagnosis! Am not prepared to take a gamble with this lot... Furthermore I DO KNOW I have not CFS and that they need to investigate further, so no point in attending their clinic, waste of money and time.

As for GP ordering ALL the full iron panel tests... well, they never do, it's always half measures am afraid! Never doing investigating problems fully, just a few things here and there then they tell you they could not find any problem, so they're off the hook again... meanwhile the patient gets worse. However I do hope you will get all the help you need. All the best.

[Cariad-y-Mor in reply to JGBH]

Thank you JGBH - The GP has ordered a Full Iron Panel.....round here it is the labs that refuse to carry out all the tests that have been requested. E.g for over a year my GP had been requesting I get my Vit D tested but the lab kept refusing saying I didn't meet the criteria !!!! By the time they agreed to do it my level was 8.....severely deficient !!! Like you I know there is something not right with how I am feeling and keep deteriorating. It feels like a constant battle. I do hope you manage to get the necessary investigations done that you need. Take care.

[JGBH in reply to Cariad-y-Mor]

Hi Bernie, I understand how difficult it can be.... and how depressing it can become when you feel unable to function properly. So frustrating ... I really hope the lab will have the decency to do the tests you so much need and deserve. please let us know how you are.

Take care too.

[Cariad-y-Mor in reply to JGBH]

Me again @JGBH. Results of iron panel back ! Serum iron is 11umol ( range 10-30 ).

Serum transferrin 2.3 ( range 2.0 -4.00 ).

Seem a bit low to me but filed as " normal".......ha-ha that wonderful word. Time to get my " battle dress" on me thinks.

Thank you for taking time to respond. 💐🌷🌹🌻

[lynmynott Partner Thyroid UK in reply to Cariad-y-Mor]

I can't believe they never did a full iron panel. Disgusting!

[Cariad-y-Mor in reply to lynmynott]

Just got results back lynmynott . They seem a bit low to me.....but filed as normal !

Serum iron is 11umol ( range 10-30 ).

Serum transferrin is 2.3 ( range 2.0 -4.00 ).🤔

[JGBH in reply to Cariad-y-Mor]

Well Bernie... why am I not surprised everything is NORMAL, FINE FANTASTIC!!! I despair.

Are doctors so dumb they seem unable to see when a result is so close to the bottom of accepted range it is NOT normal, fine, etc... more so when a patient has been presenting with serious and debilitating problems for a long time It's SO obvious something is wrong. Why are they doctors if they are so stupid?? That is not acceptable.

So YES, full battle dress on... and although it is exhausting especially when feeling so unwell, please don't give in, don't give up... It's your life not theirs... If they felt that unwell I can assure you they would ensure they get the best possible investigations and treatment, regardless of cost... but hey, they are "gods"... if only in ther deluded minds.

Courage and best of luck in your battles... x

[Cariad-y-Mor in reply to JGBH]

Thank you again JGBH - You are so right about how the docs treat blood test results....and yes it is so exhausting having to constantly do battle with them when all you want is to be well again. Think I will make a new post with my results ( I sort of butted in on this one re CFS ) and see what I should do / take. Take care. 🌻

[Mamapea1]

Thank you for posting ~ I feel this may be very relevant to me ~ so helpful and encouraging to read these links. Don't know where I'd be without you guys! x

[lb003]

Thanks for that Helvella. I have often suspected my dx of ME was linked to thyroid issues and gut dysfunction leading to vitamin deficiency. I still find symptoms creep back if I'm slack in taking B12. I haven't ever been dx with Pernicious Anaemia.