Help with obtaining a private PA diagnosis in London ?? ☆♡☆

[Kittycaite]

Hello all again .

I'm having no joy from my GP at the moment ! :/ . I am currently being treated for anemia under the UCLH with iron infusions . They are lovely but do not know of PA and neurological symptoms !! They test purely on biochemical . I feel that the iron infusions are making me more ill and could mask the tests results . I'm currently waiting for MMA and Homocystien

[Kittycaite]

Ha phone jumped before i could finish !

I'm waiting for test results to come back . My GP has referred me to a neurologist but this will take months ! And clearly now I need a new heamotolgist who understands PA but again this will take time !! I'm looking to go private now for a quick diagnosis that the NHS will take seriously !! As I cannot afford private treatment too

I'm very unwell so am keen to make quick progress . I'm holding off B12 for now til I get proper diagnosis but am desperate :/ .

[Gambit62 Administrator]

Are you a member of the PAS? If not would suggest you join and then contact them - they may be able to point you at someone they are aware of.

[Kittycaite in reply to Gambit62]

Hi Gambit62 . Sorry for late reply as I've not been on here for a few days. I joined PAS and spoke to Martyn. He said to steer clear of Heamtologists and that Dr Sharma could help with treatment but not a diagnosis . I'm due to speak to Dr Sharma on Thurs for 15 min's . I'm guessing the GP will only take a heamotolgist or neurologist advice ? I'm still trying to convince my GP and have sent very detailed email with the NICE , BNF , Nequas , PAS links and also one on Nitrous Oxide as I now see clearly that my symptoms of gynea , kidney infections , depression started 17 years ago not long after my first gynea op !! I've been in and out of hosp since and have 5 ops !! 2 of which were last year 3 months apart so I can really see the nitrous oxide has wiped me !! I also sent link re thyroid as now my thyroid is underactive too , I've put on 2 stone in a year for no reason and my hair is falling out :/ .My GP says my IF and MMA are normal but I have not seen the results . Martyn advised me on what links to send GPs and what to say but said PAS didn't write to GPs but it would be the GP who had the final say .

I can't really afford to see anyone private but I would try and scrape the money together if I could get a proper diagnosis to take back to GP.

I'm not good on net so my searches so far haven't lead too much :/

There seems to be private clinics in Lon offering injections but not proper diagnosis . I'm guessing if I stated private treatment then the GP wouldn't ever offer me treatment ?

Been very unwell so am still confused .

Thanks for replying xx

[Gambit62 Administrator in reply to Kittycaite]

Getting a diagnosis can be very difficult and even if you have one then getting the right treatment can prove very difficult. The fact that you have a thyroid condition is likely to make things even more difficult as there is a strong overlap in the symptoms and GPs are much more familiar with thyroid and unlikely to think that there could be more than one thing going on.

Suggest that you get hold of your actual blood test results if you had B12 done - and the same for MMA. You mentioned IF in response but homocysteine in original post. Have you had both done. IF is a test that is known to give false negatives - probably about 50% accurate.

MMA and homocysteine are much more specific indicators of what is happening with B12 - and will be high if your cells aren't getting enough B12 - but there are other things that could be going on that would lead to elevated levels which is why they aren't first line tests.

At the end of the day, though at the risk of never getting a proper diagnosis, you could try treating yourself with very high doses of B12 - either sublingual, nasal or skin patches - they don't work for everyone but can be very effective for others. However, I'm not sure, given the anaemia, that I would do this without your doctor being aware as there is a risk of low potassium during the early stages of treating a B12 deficiency which is much more likely with anaemia being present.

[Kittycaite]

Hi Gambit62 . I've asked for my test results . I need to have a repeat Homostein as it didn't get to lab in time . I had another appointment with Senior GP last night and gave them the summary of B12 guidelines and also the BMJ printout by Alisha Hunt . I asked for a trail run of B12 and emphasised the safety and that it could work as a process of elimation as I'd gone round for 17 years without all the other treatments working ! They did seem to listen and will let me know in a couple of days re injections .

I've requested a new heamotolgist with specialism in PA . They have referred me to a neurologist but this will take time . I suggested an emergency referral if they decline immediate treatment .

I'm gonna give myself a day or two to get some energy back as I'm exhausted then I will start searching for a heamotolgist and neurologist who understand PA . I strongly believe were there is a will there is a way ...☆☆☆

Thankyou for your input and information . Xxx

I'm so glad I found this forum now !

I just want to be well again ☆

[Kittycaite]

I was quoted 300 to see a private neurologist . When I spoke to him he suggested a heamotolgist ! :/

I'm going to have to do more research but have not got very far yet :/

Thanks again xx

[Kittycaite]

Do you have any idea of what these tests are called ?

My GP shouted down the phone at me the other night !! I really don't feel like asking them for anything at the moment . They have treated me horrendously .

Xx

[Gambit62 Administrator]

Kittycaite,

as low potassium would be a result of the B12 treatment its something that may need to be monitored in the early stages of treatment so tests now are unlikely to do anything for you. Cardiac arrest is a consequence of very severe hypokalaemia. I'm not a medic but I wouldn't expect the deficiency caused by B12 treatment to be anywhere near that severe.

[PAS-admin Partner in reply to Gambit62]

Agree with Gambit. Hypokalemia is only a worry in beginning of treatment and when anaemia is present.

Kittycaite, just try and get hold of all your blood results and we might shed some more light regarding B12/PA.

[Kittycaite in reply to PAS-admin]

Hopefully my medical record will be ready to collect tomorrow . I eat a lot of potassium rich foods and have been taking potassium supplements as well.

I was in shock last week after bring shouted at by GP over the phone . I've had a few days break from it all and am now angry at how badly I have been treated !! I shall be making complaints and taking legal advice if they continue .

I shall post up my blood results as soon as I have them .

Many thanks again xx

[PAS-admin Partner in reply to Kittycaite]

Please be carefull with potassium supplements!! Too much potassium is a bad as too little (or even more). I'd advice to try only with food until potassium is tested, and take supplements only when adviced by a health professional.

It's not clear to me from the posts but you're not getting B12 yet? So why potassium?

[Kittycaite in reply to PAS-admin]

Hi . All of this info is new to me recently . I'm still in debate with GP re injections . I had read somewhere on here ( I think ! ) that if potassium was low coupled with iron anemia ( which I have ) that B12 injections could be dangerous ?

Hopefully my blood results will shed some light on this .

Should I ask for a separate test for potassium ? Does that test have a specific name ?

Many thanks xx

[PAS-admin Partner in reply to Kittycaite]

Potassium is only a problem when you have severe anaemia (due to B12def) and while on the loading dose and even then not in all cases. Thén it should be monitored by your GP. But please do not take potassium supps without knowing if you are deficient, and then it should be monitored by a doctor as well. And as far as I know, it does not apply in iron def anaemia.

I assume you are getting iron, so the anaemia might be resolved by now. We'll await your blood results...

[Kittycaite]

I have been having iron infusions due to very low levels of anemia . The infusions have made me very nauseous and unwell especially the last one . I also lose the iron very quickly . If I was just anemic then I would be feeling better by now . This is what lead me to research into B12 and then I found PA which I strongly believe I have .

Hopefully my record will be there to collect tomorrow and I will post up the results .

I do appreciate your help .

Xx