Help and advice please

[csavery]

Good morning to you all,

I would be really grateful for some advice, I'm struggling to walk, stand and function every day.

I've suffered with extreme fatigue, heavy lead like legs, cant stand for long, walking is difficult, balance very poor. When I shut my eyes I nearly fall over. Palor, extreme stomach swelling, tinitus, confusion plus sudden onset of overwhelming confusion at times, breathless, poor memory, nausea, no appetite, insomnia plus many more symptoms.

To through in the mix, I had to seek private help from Dr Skinner who prescribed me levothyroxine as said I had Hashimotos, after 6 weeks on medication, the improvement was incredible, however, the above symptoms also appeared.

I started to self inject every other day within the last 12 months, noticed an improvement ( stopped about 4 months ago, for financial reasons) and now feel at my worst again.

I have been battling with my gp, to give me the injections on the NHS, who told me it was my age (by the way, Im only 47)

I explained to the gp that I had self medicated and the results were amazing, even able to walk, fatigue improved and could return to work. but since not being able to afford it, I'm back to square one. He tested my B12 levels after 3 mnths without and my levels were 2000.

Since that appointment 2 months ago, Ive deteriorated, and at my wits end to know how I tackle this. Im a single parent with 3 independent children, does anyone have any advice how I communicate with my gp, who's not willing to listen.

Please excuse my spelling, this took me an hour to write

Thanks

Claire

[clivealive Forum Support]

Hi csavery I'm not medically qualified but the first thought I had was the following quote

False normal B12 results and the risk of neurological damage

(U.K. N.E.Q.A.S Haematics.org.uk

)

“In the event of any discordance between clinical findings of B12 deficiency and a normal B12 laboratory result, then treatment should not be delayed. Clinical findings might include possible pernicious anaemia or neuropathy including subacute combined degeneration of the cord. We recommend storing serum for further analysis including MMA, or holotranscobalamin and intrinsic factor antibody analysis, and treating the patient immediately with parenteral B12 treatment.”

Three months is probably not enough for you B12 levels to normalize after you've been injecting yourself so your doctor should be treating your symptoms seeing that as you "started to self inject every other day within the last 12 months, noticed an improvement" it was the right thing for you.

Please have your serum Folate checked too as this is essential to process B12

[Gambit62 Administrator]

Suggest that you actually join the PAS

pernicious-anaemia-society....

and contact them as they can help you with dealing with your GP in more ways than the members of this forum can

This blog explains a bit

martynhooper.com/2016/09/23...

[csavery in reply to Gambit62]

Thank you. Yes I am a member, will contact them for some help