Expensive but hopefully worth it! - Pernicious Anaemi...

Pernicious Anaemia Society

32,678 members24,075 posts

Expensive but hopefully worth it!

Bluedragon profile image
6 Replies

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 wanted....er 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.

Written by
Bluedragon profile image
Bluedragon
To view profiles and participate in discussions please or .
Read more about...
6 Replies
Ruthi profile image
Ruthi

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!

Bluedragon profile image
Bluedragon in reply toRuthi

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.

Secondchance profile image
Secondchance in reply toBluedragon

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.

Bluedragon profile image
Bluedragon

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.

Secondchance profile image
Secondchance

Hi

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

Bluedragon profile image
Bluedragon

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.

Not what you're looking for?

You may also like...

Update of visit to the GP

Just to update you all who have kindly guided me. I have success from my GP. I did as he asked and...
Abijah profile image

Is it worth me getting supplements or just wait?

Hello again ;) So I had my 1st of 6 of my second lot of loading doses yesterday but due to no nurse...

Is it worth finding out the cause?

I've had PA for a couple of years and things have settled down into a good routine of injections...
Hologram profile image

Is it ok to self-inject everyday when starting treatment?

Hello all. Just yesterday I gave myself an injection of B12 - that was my first sslf injection of...
Fleecie profile image

Been on injections over 2 weeks, improving but very slowly - advice please

Hi I've been on methylcobalamin over 2 weeks (had 10 hydroxocobalamin doses before that but my GP...

Moderation team

See all
Gambit62 profile image
Gambit62Administrator
Foggyme profile image
FoggymeAdministrator
taka profile image
takaAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.