PA / Low iron early stages with NHS - advice please

[youngatheart123]

Hi all, Thank you for creating such an informative and supporting PA community here! I wonder if anyone can weigh in on my scenario please. I’m new here so apologise for long initial post....

I haven’t been officially diagnosed with PA yet as my GP thinks my B12 levels are ok (500)- but this is based solely on a full blood count test so I don’t know if it takes into account inactive b12....she has me on iron supplements for anemia to see if my iron levels rise (currently 9?) Having done my own research, my accumulative symptoms are exactly those of PA. It was actually a relieve to find a cause to it! I went back to the GP but she wasn’t interested....

My questions:

Too soon to SI? I guess if I begin self treating then the GP’s results (if more test are eventually done) would appear that I am well so I would be left without an official diagnosis or any of the NHS loading injections?

On the other hand, judging from most people’s experience, the NHS injections become secondary as clearly not enough and even borderline a nuisance... specially as we have to keep the self medication secret from GP. what (if any) are the benefits of having an official diagnosis from GP?

Is it worth getting private PA blood test done before I start treating myself? If so, What blood test should I ask for and if you can give any (not pricey) recommendations where to do it, I do so appreciated the help.

Finally, I read somewhere that you have to be taking some form of B12 some time before getting blood test to get a true picture of your body’s ability to absorb and maintain, is this true? If so at what quantity and for how long?

I am desperate to ease my symptoms so have the relevant German website ready to buy, but would love some guidance on the above mentioned first.

Thank you in advance!

[JanD236]

I’m not one of the experts here but I would say that with your B12 level very comfortably in the normal range and with your iron levels so low then if it were me, I would be looking to see how I feel once the iron is at a better level.

If at that point you’re still feeling unwell then other reasons could be investigated, including B12 if you still feel you have symptoms of B12 deficiency.

[youngatheart123 in reply to JanD236]

Hi JanD236,

Thank you so much for your reply. Any input isn’t greatly appreciated. Out of curiosity, would your opinions vary if the length of time time my iron levels have been low is significant? I ask as I have been prone to low iron levels most if not all my adult life.... I don’t usually bother my GP with it as iron supplements seem to be the answer I always get. I have a consientently high iron diet too.... can’t help but wonder the reason behind my tendency to drop iron levels....

Much appreciated

[JanD236 in reply to youngatheart123]

I guess my reply would differ if you are recently feeling unwell in a way that you can distinguish from how you feel with low iron. But I still feel it best to get the iron levels sorted sand then look for other reasons if you’re still not well.

[youngatheart123 in reply to JanD236]

Thank you so much for your input.

[Gambit62 Administrator]

If not done already also worth getting a thyroid panel done - hypothyroidism can result in problems absorbing minerals and vitamins and iron is usually the first one to manifest.

[youngatheart123 in reply to Gambit62]

Oh thank you so much. After much insisting they did my thyroid a few years ago but said everything was fine. Thanks for checking though.