Hi all, I am a medical doctor and was diagnosed with PA...

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Hi all,

I am a medical doctor and was diagnosed with PA 12months. I think I must have had it for about 5 years and it almost cost me my career, as I decided to "give up" because I couldn't find the energy to keep up. Its been a long story, the worst thing was knowing there was something wrong but had no idea what it was. I have had blurred vision, palpitations, night sweats, poor apetite, severe weight loss, gastritis. unsteadiness, confusion, anxiety and panic attacks etc. I was late in being diagnosed because initially my blood results were normal.

The injections have given me my life back but the fatigue comes back after about 4 weeks ( at the moment my injections are 2 monthly).

The main thing is knowing that there is something to explain all my symptoms. If there is any specific questions please ask and I will do my best to answer. (Sorry but the email has been removed)

Lynval

[i:0615be2852]This message was automatically imported from the original Patient Experience[/i:0615be2852]

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12 Replies

  • Posted

    Hi,No questions ,just glad your still on track with your career.I always feel full of energy after having my jaband can always tell when it is due,

    Gladys

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  • Posted

    hi there, just read your pa experience, soo glad you are back on track. i was diagosed in August 07 and i now have my B12 injections every 4 wks. At the moment i am waiting for results to see if i am anaemic as well as i dont feel much better. do you know what b12 level should be for a normal person? mine was 123.

    thanks debbie.

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  • Posted

    Hi, Glad you know what is wrong with you, it must have been a great relief. Does it seem odd to you that you could have so many symptons and yet your blood was ok? I was very tierd unable to think fell asleep all the time, (not as many problems as you) and was being treated for being menopausal and depressed a blood test was not offered until I went to a different doctor in the same practice. This had gone on for about 7 years but maybe some part of the time that could have been the cause and then it changed I dont know. ( it was also mentioned it can develope during the menopause?) is that correct?

    I was told my blood cells had stretched whiched indicated B12 Defficiency. I was lucky it was court at the begining and had 1 injection for 5 days and then every 3 months.

    I feel a hundred times better and went through a stage like you when I thought I needed an injection about every 2 months, when I asked the doctor he told me that it was my body's way of trying to get some more and if he tested me my B12 would be ok, so if I felt tired and listless I would tell myself I did not need it, and wait another month, it has worked, I am sure if it had persisted I would have gone back to the doctor

    IS THAT WHY IT IS DIFFICULT TO DIAGNOSE AS SYMTOMS COULD BE SIMILIAR TO OTHER CONDITIONS?

    DOES THE CONDITION USUALLY LEAD TO DIMENSIA? l look forward to your reply and thank you for taking time to put your experience on here. Regards Tilly.

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  • Posted

    Hi

    I have just been diagnosed with P.A. I had tingling in arms and legs, extreme fatigue, dizziness , panic attacks and very heavy periods. I have now had an endoscopy and been told that I have chronic atrophic gastritis. I do not have any b acterial infection so they are assuming it is autoimmune (I'm 46) even though I did not test positive for antibodies. I am having injections however am still low in iron, feel tired, have gas, bloating etc. Can anyone suggest what I can do to reverse my stomach problems and any other advice - e.g. diet etc.

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  • Posted

    Hi

    I was interested to read your post. You are a medical doctor and it took so long to diagnose your PA? My mum started having bowel problems last year. She lost loads of weight, became very weak and ended up in hospital for five months. The doctors have done endoscopies and a myriad of other tests, but although she has some diverticular disease, nothing that they think would cause her problems. She left hospital in the same state that she was admitted, but has deteriorated over the last few weeks and is now back in hospital. She is so weak she cannot walk and has episodes of confusion. Her feet are swollen. Her tongue is red, but she says not sore. Her speech sounds like her tongue is swollen. Her bowel problems continue. Whilst in hospital she developed two DVTs and is now on warfarin.

    She has never been tested for B12 deficiency. The doctors say they have to justify the test and because her red blood cells are not enlarged, they do not feel that it can be PA.

    Are there any papers which I can show to the doctors to prove that science doesn't always follow defined paths? I can understand how they must feel with me pushing for something which I'm not qualified to diagnose, but stranger things have happened. Afterall, five months with no diagnosis is just too long.

    Many thanks.

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  • Posted

    Hi,

    You do not need any sientific papers to \"proof\" some one can have a B12 def with out enlarged blood cells, only common sense. If a person is also iron deficient, iron def will decrease the bloodcell size, B12 will enlarge the bloodcell size, so if both are existing bloodcells can be \"normal\" size.

    It costs the NHS something like £3,40 if I remember rightly to test serum B12. So get serum B12 tested now and do not take no for an answer is what I would do! You can find private labs and have bloodtests etc done yourself, not cheap but if needed I'd do that.

    I find folate tablets were my solution to getting my upset bowels sorted, have serum folate tested, if low then folate (5mg) could help!

    Kind regards

    md.

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  • Posted

    I may have to wait for my mum to be discharged before getting a private blood test done. I didn't realise it was that cheap. Sadly I think it's more about me the 'greenhorn' interfering in matters that I am not qualified. I got desperate enough to pay for the blood test results that have been taken by the hospital (no B12/folic acid) under the Data Protection Act. Unfortunately they are fairly meaningless to me, although consistently Alkaline Phosphatase, Phosphate, Albumin and C-reactive protein always seem to be highlighted as if they are outside of a normal range. Is there anything specific that I could look for?

    So you had bowel issues prior to diagnosis for PA?

    I actually purchased a supplement which contains Folic Acid, B6 and B12 which I was going to take into the hospital. However, I'm worried about distorting any blood test they may eventually do.

    Thanks

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  • Posted

    Hi Sara,

    Firstly I have to say I'm not this medic, nor have any medical training, just 7 years of PA and spend few years on an other PAS forum.

    IBS type problems are very common with PA, in the end its often autoimmune gastritis..

    Private bloodtests can range from £2,50 individual serum this or that etc (in herts) to £85,- for full anaemia profile (serum b12 folate, ferritine and full blood count) in Surrey is what I know. But you may find others, just put lab into search on your computer, then select those that do not require a GP.

    I personally would not take any vitamins etc if you think you are having problems with taking these up and are going to have investigations, in the end you want a diagnosis, its rather essential that its based on what your body holds naturally than on what you may artificially supply. My opinion anyway. You can always start self medicating after tests and no satisfactory treatment say.

    You can find every detail about any bloodtest result, what it stands for what its done for and what the results mean on lab test UK, just put that in your search, or use the excellent links given on this site, just click on the green link at the top of this page saying pernicious anaemia, choose their information page, go to bottom and there are very good links to official guidelines, NHS on PA, lab test results etc etc.

    Kind regards,

    md

    PS this forum is not used very much, few people seem to get replies...

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  • Posted

    Thanks for your advice.

    I wonder how many people out there are misdiagnosed? I just cannot understand why a standard blood test cannot include B12/folic acid levels.

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  • Posted

    Yes I wonder as well.

    Ideally serum B12 is included in every blood test testing for anaemia.

    Ideally a B12 def is found much earlier so permanent damage is not done, it’s a cheap blood test and the treatment is relatively cheap as well.

    md

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  • Posted

    Hi, I've just been reading some of the experiences, I have been suspious for a while that I may have perncious anaemia, I have been fully investgated for palpations and fatigue, ie ecg, heart echo, and 24 hour tape, all normal, I have also sufferd with a very painfully tongue, which neither GP or dentist can find a cure for,used all the usual antifungals.....still sore and cracked. can any tell me how long it takes to get results and start treatment, I am longing to feel well again.
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  • Posted

    Hi

    Its very easy, just have a simple bloodtest, ask for serum B12 to be tested (costs only £3,40 or something, so not expensive or anything). Results should be back in 10 days, ask for copies.

    The painfully tongue can also be causaed by iron/ ferritine def (and sore mouth) and or folate def, so try tro get all tested in one go. If results are dubious, keep copies and repeat in say three months to see if there is a change.

    Other more expensive tests are MMA and homocysteine. If raised you may be def at tissue level have a folate and or B12 def.

    Hope this helps,

    md.

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