Leigh

I wonder if there is anyone out there who can help....Im 46, have 2 kids (11&12) and 2 years ago started to become very breathless. Two years on and about 18 months of trying to get to the bottom of things I am still struggling to get better. Its too long a story to write on a phone keypad but my latest development is this:

My GP believes I have iron deficiency anaemia because my Vit B12 level is average and my RDW is high (16.2%). Some of my results are extreme though eg ferritin 5ug/l (normal 22-332) serum iron 3.6umolL (normal 12.5-25). I am a coeliac (since birth) and have suffered from henoch schonlein age 6 (blood disorder). I have ALL the symptoms of pernicious anaemia but my GP says the antibody tests for it are 'difficult to arrange'? I struggle to breathe lately - and its worse when lying down. Does anyone know how I can find a haemotologist and go direct? I would rather pay a fee for all the tests and an expert analyser...otherwise I cant see my heart lasting. My GP wants to :

- put me on the pill to stop my periods

-put me on betablockers to regulate my heartrate

- give me iron sulphate

im allergic to all three so am very worried how this will pan out. The pill made me very ill, betablockers (a vvvv low dose) give me chest tightness and visual disturbances, and iron sulphate I believe gave me ulcers.

Any help would be much appreciated.

9 Replies

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  • It certainly sounds like iron deficiency anaemia. There are other forms of iron supplements apart from sulfate that may suit you better.

  • You poor soul. I'm sorry to say so but please be aware that many of the NHS consultants are worse than GPs .

    People here are brilliant and more good links and advice are available on Facebook -

    facebook.com/groups/PAB12DS...

    I'm sure your ideas are correct - best wishes for being well soon, once you can get your treatment.

  • Hi,

    I wish you good luck with finding a haematologist. My experience made me feel that sadly some haematologists are not that knowledgeable about B12.

    I feel I wasted a lot of money on a private appt with a haematologist. The person concerned did not seem interested in my symptoms or medical history and I had tests which I later found might not have reliable results because I was self treating with B12 at the time.

    Tests such as MMA, homocysteine and Active B12 as well as a "blood smear" might be useful in helping to diagnose a B12 deficiency. Sometimes a GP/NHS consultant will order these tests. In the past I have sometimes offered to pay for tests that a GP seemed reluctant to order. It's possible to get these tests done privately.

    b12deficiency.info/b12-test...

    The rest of the website is worth reading in my opinion.

    Do you have results and ranges for your MCV and MCH on your latest FBC (Full Blood Count)? Has the GP tested your folate levels?

    High MCV and high MCH can indicate the possibility of a macrocytic anaemia. Low iron makes red blood cells smaller. Low B12 and/or low folate makes red blood cells larger. If a patient has both low iron and low b12/folate then the red blood cells can appear "normal" size and a GP might miss both conditions.

    patient.info/doctor/macrocy...

    patient.info/doctor/pernici...

    "GP says the antibody tests for it are 'difficult to arrange'?"

    I don't understand this comment. Its not difficult to arrange an IFA (Intrinsic Factor Antibody test)....I've had this test. The IFA test can be done privately. The IFA test can help to diagnose PA but it's not always reliable. It's possible to still have PA even if IFA tests are negative.

    Have you rung the PAS? They are helpful and sympathetic. They are sometimes able to intervene. If you leave a message they will get back to you.

    pernicious-anaemia-society....

    01656 769467

    martynhooper.com/

    Recent documents make it clear that patients who are symptomatic should be treated even if their B12 levels are normal range. Has your GP seen the following documents? I gave copies to my GP.

    ukneqas-haematinics.org.uk/...

    bmj.com/content/349/bmj.g5226

    Google "BCSH Cobalamin and folate Guidelines"

    This is a long document but I have been told that the NHS is supposed to be following its recommendations. It came out in 2014 so it's possible that some GPs have not read it yet. The PAS have a summary of this document in library section on their website.

    Books

    Could It Be B12 by Sally pacholok and JJ. Stuart

    "What You Should Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

    Useful websites

    b12d.org

    "I have ALL the symptoms of pernicious anaemia "

    I assume this means that you have neurological symptoms. I have read that untreated B12 deficiency can lead to permanent neurological damage in some people.

    The BNF (British National Formulary) Chapter 9 section 1.2 lists recommended treatment for B12 deficiency. The treatment is also mentioned in the BCSH Cobalamin Guidelines. Treatment for someone with neuro symptoms and B12 deficiency is more intensive. The BNF is copyrighted so can't reproduce info but this link contains similar info in Management section.

    patient.info/doctor/pernici...

    Some people try changing their GPs.

  • Hi, I take Solgar brand Gentle Iron 25mg. twice daily and it has helped me alot with absolutely no stomach discomfort. It is a chelated form of iron. I take vitamin C with it to help my body absorb it. I get it from Swanson vitamins online. I am in the US but I think it's international? It sounds as if you are very iron deficient so this should be helpful if you can get it and start taking this brand. The bottle says take one but my naturopath says take 2 a day. I was feeling exhausted, breathless, my hair was falling out, heart palpitations but within 2 weeks felt 100% better!

    Good luck to you with the iron and also B12! :-)

  • Yes, good point about the Vit. C helping absorption of iron. I take my iron sulfate with a fizzy orange-flavoured Vit C tablet.

    The fumurate and gluconate supplements are also supposed to be easier on the GI tract than the sulfate.

  • I shall definitely give it a go - thank you so much.

  • Poor you - I also had a ferritin level of 5 and felt awful. You really need iron - you will probably feel so much better if you can get your ferritin level up. The symptoms of iron deficiency anaemia are very similar to the symptoms of B12 deficiency and your results clearly show an iron deficiency. Try buying some ferrous gluconate - you can buy it over the counter and it is much kinder to your stomach than ferrous sulphate.

  • Thank you so much to all you kind lovely people x

  • First, I would see a good Pulmonologist, it could be asthma. They should take X-rays and do 2 breathing tests. It could also be Acid Reflux. You could also be having problems with your Thyroid, so see an Endocrinologist. I was diagnosed with asthma, but recently was not responding to treatment, and was then diagnosed with over-active thyroid. I have been taking the pills only 1 week, but already can breathe better, and a cough I had is almost gone.

    If you are taking any medicines, check into them. I had real problems with Amlodipine for High Blood Pressure.

    Just for now, twice a day try taking a teaspoonful of unfiltered Apple Cider Vinegar (it should have slime on the bottom of the bottle called the mother) in warm water with a little honey. It helps. B12 sublinguals, Magnesium, D3, and B2 help too.

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