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Author Topic: Pernicious anaemia?  (Read 164 times)
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Anne56
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« on: May 09, 2018, 10:21:54 AM »

Hi everyone,

Iíve ordered some B12 tablets as Dr Myhill recomends them as a supplement and this has led me to thinking whether I might have Pernicious anaemia? The following articles are very interesting.

https://www.martynhooper.com/2018/02/10/chronic-fatigue-syndrome/

Martyn Hooper is the Chair of the Pernicious Anaemia society and he is involved in the drawing up of the new NICE guidelines.

This article by the ME society is also very informative: http://www.meassociation.org.uk/?s=vitamin+b12

PA is in my family. My grandmother and two aunties had it and it can be hereditary. The symptoms of ME and PA are very similar and the test they do for PA is not conclusive.

I have made an appointment with my gp. I canít get an appointment until next month. sad Iím wondering how many of us have been misdiagnosed? As Martyn Hooper says íI suspect that a great many people who have been diagnosed as having ME/CFS actually have Pernicious Anaemia;í.

Has any of you ever suspected you could have this?

Iíll let you know how I get on.  c017
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roger
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« Reply #1 on: May 09, 2018, 10:40:18 AM »

Hi Anne,

The answer to your Ďwonderingí is a resounding yes simply because CFS/ME isnít a diagnosis at all Ė itís simply a Ďtitleí youíre given when the medical profession canít work out whatís wrong with you. The same applies to many other Ďdis-easesí,  lupus being an example.

So itís well worth your while to get checked.  If the result is positive, the B12 tablets are unlikely to be helpful. Youíll need injections. Make sure you tell your GP about the family history.

Good luck Ė I hope your investigation provides a useful piece of your particular puzzle.
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Anne56
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« Reply #2 on: May 09, 2018, 10:50:24 AM »

Thanks Roger. From what I have read in the article by Martyn Hooper none of the tests are 100% reliable so I could be left 'hanging'. I really think that the NHS should do further more sensitive tests when the usual ones show as negative. But we all know that the NHS is desperate to save money! I think that the NHS is great dealing with emergencies but as for complex, chronic conditions, then I think the only way to go is to pay for private treatment.  38
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roger
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« Reply #3 on: May 09, 2018, 10:55:16 AM »

The simple low B12 test is accurate enought to establish whether or not to supplement.

100% agreement re the NHS as I've said in my recovery board, but in my experience, paying for 'treatment' isn't much better - you'll get a longer and more pleasant consultation though, and maybe that's worth paying for.
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agapanthus
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« Reply #4 on: May 09, 2018, 11:05:47 AM »

One issue is the ranges are set too low, so the NHS will say you are fine when you may be at the bottom of the range. You need to ask for a copy of your test when done, which is your legal right (you may have to pay a small fee for admin costs for printing it) and then you can check it.

I had a test done, at my request, but I think by then I was supplementing anyway. I have never shown low, and I even did inject for a couple of stretches of 6 months but it made no difference for me and I don't have ME at the severer end anyway. I believe that if injections are difficult for any reason, then transdermal patches, or taking in B12 under the tongue (you can buy it as a spray liquid) are the next best ways to supplement it as it then bypasses the stomach.
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Anne56
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« Reply #5 on: May 09, 2018, 05:48:23 PM »

Thanks. I'll look into the patches and the drops. I'll definitely ask for a copy of the results.  c017
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