Pernicious Anaemia Society
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Expensive but hopefully worth it!

As I've posted before - my dr sought advice from a haematologist because my symptoms had returned before the 3 months - in fact before end first month. The result - as I didn't have IF and therefore not PA (their words) I wasn't to have any further treatment.

I wrote a letter quoting guidelines and articles I had read and included references to useful reading material. I got called into the surgery to find two doctors seeing me! Am I a stroppy patient I asked? Reason given was training GP needing occasional oversight - really?!!!

Long and short, I've been referred to a haematologist but cannot have treatment before. Appt they do follow NICE guidelines but have to follow what they were advised and yes - there is always a risk to any injection! (I'd asked for one in meanwhile and after all what risk was there!) told to not raise voice - I said merely being assertive....I wasn't shouting, just a bit louder lol.

They would of course offer oral meds if I no thanks - I've sourced my own active version...just to get me moving during day...

They refused to do antibody checks on thyroid as TSH and FT4 within range (I knew they wouldn't do T3) but agreed to my request for mineral checks - well, said electrolytes so hopefully that includes ca and mg.

Anyhow, I have splurged out on private testing with Blue Horizons - a comp female profile II from ZRT which includes everything I wanted - all thyroid, adrenal, sex hormones (been on HRT for years). And then got carried away - joint credit card after all - and paid for genetic testing through 23andme....😊

I hope it all gives answers.

6 Replies

Wow! Hopefully you'll get some answers!

And next time you go to see a doctor do take some one with you! How dare they be so rude! If you have a trainee in the room, or are to be seen by one they ate supposed to ask permission!

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Ruthi, I've seen her a number of times now and not once was it mentioned that she is a trainee! Obv didn't know a great deal about B12d and always needed to ask other GPs as I wasn't keeping within a normal box of being happy about 12 weeks maintenance and being symptomatic. It is all so frustrating.

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That is awful! How upsetting for you and the thing I dread next time I have to order a prescription. I am not coping on monthly injections now- noticed some symptoms starting to come back but really don't want to ask GP in case I end up worse off.

I get very upset reading things like this on here. I hope the private tests you ordered are worthwhile. I have toyed with the idea of genetic testing too. Do let us know how you get on.

Also remember to take someone with you next time.


Thanks second chance. The pack arrived today for the dried blood and saliva tests. I just have to follow the instructions on how and when. Looks very efficient.

I'm wondering whether to take someone with me to the haematologist appt - not till June mind.



Did you go ahead with 23andme testing? Just wondering as considering myself...


All sent off Secondchance. Waiting for it to arrive. Haven't sent off the other ones yet. Who knew how difficult it would be to organise myself to spit into tubes 4 times a day and prick myself and send it all off so it avoids arriving at a weekend lol.


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