Pernicious Anaemia Society
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Not Pernicious Anaemia - Hemolytic Anaemia

To anyone who is struggling with finding a diagnosis for their symptoms, as I have for two years, and whose symptoms may not have been relieved by B12 injections - here is at least one possible diagnosis that is extremely similar in symptoms but very different in cause and treatment.

I went for a scan this week and was told that I have a gall bladder full of gallstones and with a thickened wall. For my age, it was quite significant - enough for the sonographer to suggest that it would need to be removed (I am 46).

I have suffered from chronic, acute anaemia for the best part of two years and I have ALL the serious symptoms that follow if it is not treated properly - heart palpitations, heart pain, breathlessness, pins and needles in arms, hands, legs and feet and now peripheral neuropathy which is very painful in my feet and I have difficulty walking for a few seconds when I get up after sitting down and a degree of continuous pain in my feet. I am not myself at all and am often in a 'fug' as they call it - unable to think clearly and my memory has become worse over time. My spontaneous speech is muddled and I will often say words 'out of order' or use the wrong word (but one which is similar) although when I am concentrating on what I am saying (ie non-spontaeneous) my speech is normal.

To anyone in the street I look fairly normal apart from a pale yellowish pallor and I sound very normal as I am upbeat and chatty but nothing could be further from the true situation.

I have recently posted about being on a gluten free diet for 46 years and during the last two - I have started eating a huge amount of rice compared to most people as I've stopped eating products made with gluten free wheat starch and started eating Genius bread (made with rice flour). Rice has a huge affinity for arsenic and sucks it up out of the paddy fields like a magnet attracting its opposite pole.

Arsenic poisoning causes Hemolytic Anaemia and I have every single symptom that I have so far been tested for. The gall stones were a real giveaway as I have very low cholesterol and no other associations to the causes of gallstones - except - the amount of billirubin i am producing to destroy my red blood cells...

I am off to the haemotologist the week after next and I will make sure I am tested for everything associated with hemolytic anaemia and arsenic poisoning and will report back with the results.

I would also say to anyone who has had problems with their GP....

....I have fluid on my ankles which I have had for at least six months. I visited my GP with terrible heart pains and palpitations as well as all the other symptoms I've listed (but I went primarily because of my heart) and my GP looked me in the face and told me there 'couldn't possibly be anything wrong with my heart as I would have swollen ankles'. It was winter and I was wearing huge knee high clonky winter boots. That was the last time I saw her. As I left the surgery, there was a very elderly lady sitting outside on a bench, so I stopped to ask her if she was ok. She told me she didn't like sitting in the waiting room and preferred the fresh air. I asked her if she had a good doctor (as I was about to change mine) and she said she did and gave me his name. I asked her if she had met my doctor and she said 'Yes - I saw her once - I was having terrible bladder problems and she told me to stop drinking after six o clock'. The doctor in question is married to the senior partner at that surgery and when I tried to change to a different GP (very innocuously - I didn't even give a reason as to why) - they closed ranks and wrote me a three page letter telling 'me and my family' to 'find another practice'. It took me a month to be able to read the letter in full - but I recorded my meeting with that GP on my phone and when I am better I have every intention of doing something about it. She is a health hazard to any patient.

It goes without saying that you have every bit of empathy from me with getting through what is a very difficult experience and I really do hope that you get to the bottom of your symptoms.

(And after a visit to a CAB last week - it was confirmed to me by a regular tribunal representative that you can use a recording made without permission in court if it is deemed to support your evidence. Of course, sometimes it is difficult to remember whether we asked permission...perhaps we did...)


4 Replies

Sounds terrible - I really hope that something is done about a doctor who is telling elderly patients not to drink after 6pm - its out of the ark and totally inappropriate


I wish you luck with getting to the bottom of your problems. Sorry to hear about your bad experience with your surgery but can empathise as I experienced pressure to leave a previous surgery.

A link about Haemolytic Anaemia

"you can use a recording made without permission in court if it is deemed to support your evidence"

I wish I'd made a recording of some of the conversations I've had with medics.


Good luck with diagnosis and recovery . some doctors are really bad. Dont beat yourself up with this (i have so many times) concentrate on getting well. xxx

1 like

Sorry to read you are having a difficult time. Am just wondering with your struggle if you have been correctly tested for the thyroid and not just the TSH. Thyroid and gall bladder issues are often connected. The tests you require are TSH- FT4 - FT3 and thyroid anti-bodies - Anti-TPO and Anti-Tg.

Doctors are equally bad at diagnosing the thyroid issues due to poor testing and understanding of the results. We have to read and learn as much as possible so we can help ourselves.


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