Hi, Can anyone tell me if it is possible to get the Active test done without referral from my GP, he wont do it . I am diagnosed with PA and on 3 monthly jabs but after 2 months it's terrible. He says Im depressed. Results in low normal range.
Also I am moving to Germany, Munich next month does anyone know what the attitudes are like by GPs towards PA out there and what they normally recommend as treatment levels?thanks.
Attitude in Germany is much easier, you can just buy the hydroxocobalamin at the chemist, no prescription needed. You may well find it a lot easier (and cheaper) to get the active B12 test done there, if you know any one there ask them to find out for you? You can have Active B12 tested privately here, but it will cost a lot, compared to the St Thomas one for £18,- , see:
can't vouch for the attitudes of the doctors out there to B12D - would be a bit wary because I have a colleague whose GP is German and the colleague hasn't found the attitude of her GP very helpful, but as marre says B12 shots aren't a prescription only medicine in most of continental Europe so you can just go into the pharmacist and get it when you feel you need it.
Hi Thanks for that. However I have offered to pay for the test myself which is what I did last time but that GP has left and now the new one won't do it, just put me on anti depressants !
I'm not sure that getting the test done is really that useful once you have started on the injections - even the active B12 test. Know advice I have seen from others is that you should get it done before you start injections if you want to get a proper diagnosis - or even wait 6 months without supplementation - though know that isn't something that I would be prepared to do.
Hi, thanks. No way could I last six months !!! after three I can hardly get out of bed. PA is already diagnosed for me. but GP treats me according to my bloods, not symptoms. A familiar story I fear.
If you have neuro symptoms then the correct treatment in UK per NICE guidelines would be injections every 2 months - though also sounds as if the loading shots weren't done correctly - should have been once every other day until you stopped improving.
cks.nice.org.uk/anaemia-b12...
Sorry that your GP is such an idiot - I would have though that common sense would have told them that if they are flooding your body with B12 then testing levels isn't going to be much use but guess a lot of them don't have common sense because my GP was the same. I supplement with a nasal spray - which I think actually works better for me than the injections but I don't know if I have PA or another absorption problem and think the difference is pretty academic.
And lots of people have problems with the 3 months - even the 2 months for me was far to long. Doesn't seem that there is any clear scientific background for using injections once every 3 months as the norm.
all makes me so mad with frustration and guess it is the same for you.
Hope you have better luck finding a decent GP in Germany - at least there though you can get the injections more frequently if you feel you need them.
The private test at Blue Horizons main website (bluehorizonmedicals.co.uk/s... ) is cheaper at £87.15, plus you can get £10 off with the TUK10 code from Thyroid UK. More info is here thyroiduk.org.uk/tuk/testin.... I think there is a coupon to remove the consultancy fee as well.
However, can you not offer to the GP to pay for the NHS test yourself, all you need is a signed referral letter? You can get the kit sent out to you and have blood taken at the surgery. At £18ish for the test and probably around £7ish for postage back via Special Delivery this must be the cheaper option? It's no skin of the GP's nose to write a quick letter, and if the GP wants to be funny, you could also offer to pay for his letter. It might still be cheaper than the above test.
As a side note, could Thyroid UK offer a similar service like they do with Genova? So you quote Thyroid UK and they become your 'referrer'. More information at thyroiduk.org.uk/tuk/testin... for people not sure what I am talking about (at bottom of page)
Thanks for the reply, I have offered to pay for the Active test at my GP. but he still says he doesnt think its whats wrong. He has put me on antidepressants in preference! B12 causes depression!!!!! The GP just does not want to up the B12 I just cannot understand it.. I can get it over the counter in Germany but dont fancy trying to self inject.
There is not at lot of point in (active B12/ MMA) testing if you are on treatment, possibly worth it if you go off treatment for something like 3 months, and your serum B12 levels are on the low side of normal (under 400 say). Its very hard to get more frequent B12 jabs, learning how to self inject is currently the best option patients seem to have. Some find B12 lozenges and or nose sprays etc helpful, or find a more supportive GP. Others pay for private treatment. You could ask to see a haematologist, then neurologist and then possibly end up on once every 2 months B12 (I did). Its best to have further investigations if you are not doing well on current treatment, testing serum folate and ferritin may help to see if these are low and or other issues such as thyroid etc may be playing a part. This topic gives some guidance to what you could try to convince your GP to get more frequent B12, see:
pernicious-anaemia-society....
I'm sorry you are in this situation, you are not the only one, many have the same problem and perhaps it helps to get change in treatment by getting as many people as possible to sign this petition see:
healthunlocked.com/pasoc/po...
also noticed this on the NICE guidelines
cks.nice.org.uk/anaemia-b12...
"What if a person is still symptomatic despite maintenance vitamin B12 treatment?
If a person's symptoms recur before the next injection is due, seek specialist advice from a haematologist."
However, referal might not get you very far as its a bit hit and miss as to whether you get a sympathetic haematologist.
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