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Author Topic: Pernicious anaemia?  (Read 1004 times)
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Anne56
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« on: May 09, 2018, 10:21:54 AM »

Hi everyone,

I’ve 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 can’t get an appointment until next month. sad I’m wondering how many of us have been misdiagnosed? As Martyn Hooper says ’I suspect that a great many people who have been diagnosed as having ME/CFS actually have Pernicious Anaemia;’.

Has any of you ever suspected you could have this?

I’ll 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 ‘wondering’ is a resounding yes simply because CFS/ME isn’t a diagnosis at all – it’s simply a ‘title’ you’re given when the medical profession can’t work out what’s wrong with you. The same applies to many other ‘dis-eases’,  lupus being an example.

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

Good luck – 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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chill
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« Reply #6 on: June 24, 2018, 10:55:59 AM »

Hi

I have blood tests tomorrow for PA.  I had to ask though, i had an FBC panel done and was told by my gp that the results were "normal".  Being the sort of person i am, i asked for a copy of the results and yes, they were technically normal, but my inflammation and red blood cell size were both at the very top of the reference range, so i went back and explained to my gp that this could indicate PA and wanted the b12 test.  This is not how it should be, but it is.  I will of course let you know my results.
chill
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Anne56
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« Reply #7 on: June 24, 2018, 02:04:54 PM »

Thanks chill. I went for the blood test last week and will ask for a copy of the results when they come through. Your post has reminded me. c017
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chill
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« Reply #8 on: July 04, 2018, 07:01:06 AM »

Hi My b12 result was 512 which is apparently normal, however i have all the symptoms of PA but that does not seem to matter! what to do..... i feel so ill, especially over the past week and i just cant get the gp to look beyond the CFS diagnosis or the test results. Despair!
chill
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roger
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« Reply #9 on: July 04, 2018, 01:41:49 PM »

Hi chill - when I was injecting B12, which I did for a couple of years, me reading was over 10.000, and I was fine. So I wouldn't worry too much about what 'the system' considers to be normal.
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chill
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« Reply #10 on: July 05, 2018, 07:04:17 AM »

Hi Roger

Thats interesting, were you prescribed the injections because  i cant get my gp to give them to me as my reading is normal? I dont put any trust in the blood test as i know they measure free and active b12 which is useless information really.  When i insisted on the blood test i was hoping (sounds daft i know) that it would come back low so that i could get the injections because i am almost sure i have PA, i have read a lot about it on the PA association web site, which is where i learned that the blood test is unreliable.  Even though all the guidelines say to treat the symptoms not the test result, my gp is going by the test result!
chill
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roger
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« Reply #11 on: July 05, 2018, 08:14:04 AM »

Hi Chill,

I don't do GPs. I got it from Sarah Myhill, who does do the tests but takes more notice of the symptoms than the test results. Trouble is, that's not NHS so you have to pay.
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agapanthus
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« Reply #12 on: July 05, 2018, 08:28:34 AM »

I think it would be difficult to get via Dr Myhill now unless you were a patient. I managed to persuade my GP to get a nurse to show me how to inject myself (not difficult and there are Youtube films too to help), which I did for a while and as I was then a patient of Dr M, could get the B12 from her. My understanding is that if B12 is not needed then it is just peed out, so would not harm you if you didn't really need it.

If you join an online B12 support group then they should have info on the best ways to treat yourself - whether that be via injection, or sublingual or by patches. I am not really up on all that myself as it didn't make enough difference to me to think it was in fact needed for me. Anyway, from memory there are a number of such B12 support groups/forums around - look for them on Facebook or Health Unlocked. I have read that even those people who are accepted as having PA do not get frequent enough injections and so these people will seek out treatment sometimes to tide them over.
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chill
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« Reply #13 on: July 05, 2018, 08:49:51 AM »

Thanks both.  I will look in to the options, i spend a lot of time on Dr myhills website and know she sells sublingual spray which i thought i might try. Money is a big problem for me though as ESA does not account for needing any actual treatment or that the NHS is too overstretched to be able to give it! The struggle goes on....thanks again, it helps so much to have people who are understanding
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roger
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« Reply #14 on: July 05, 2018, 09:04:13 AM »

To keep costs down, sublingual is probably the next best alternative to injection. Beware of different types though. I'm pretty sure that Sarah M would only sell the good stuff.
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Anne56
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« Reply #15 on: July 05, 2018, 01:45:27 PM »

I went to see  my gp today as my B12 result was so high. He reassured me that it was fine. He also said that it could be that the Vitamin B12 supplement is still in my body. He says to wait for three months and then he'd redo the test. I broke down in the drs as I was hoping that it would be something that they could look into. He was very understanding and said that he would refer me to any specialist who I think could help me.

Thanks for your comments. It's good to know I am not alone in fighting this condition.
 c017
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roger
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« Reply #16 on: July 05, 2018, 02:03:54 PM »

Hi, Anne,

Well at least he doesn't seem bogged down in medical dogma. But don't worry about high B12 levels. They're fine.
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