Advice on haematology and neurology consultations please ? ☆♡☆

[Kittycaite]

Hello all . I've not been on for a while as I've been really unwell and had yet another bad fall :/

Finally after asking 3 times the GP practice has finally agreed to referring me for emergency refferals to a new heamotolgist and neurologist . Though the GPS are still refusing a trail run of B12 injections in the interim period despite me be very unwell and also giving them all guidelines etc

Does anyone have any advice on what I should expect from these refferals , what I should ask or information to give them ? Or what tests etc especially in regards to Neurology ? ( I have many symptoms which are rapidly escalating )

I am very unwell , dizzy , uncoordinated and more exhausted then i have ever been . I've stopped sublingual B12 as advised it will mask tests :/

I've been advised to write up a chronology as I have a long complex medical history . I requested my full medical records but have only received 17 years worth ! :/ but that's when my first operation was using nitrous oxide which is what I now believe stared a 17 year chain of events inc severe unexplained bleeding , severe kidney infections and depression . I've had 7 procedures using nitrous oxide !! Also in recent years I've had many unexplained bad falls resulting in breaks , torn ligaments , minuscus etc :/

Also does anyone have any advice on PA and Gynea and Urology links ? Or could direct me where to search ?

Many thanks in advance xxxx

[PAS-admin Partner]

Did you get a copy of your blood results?

If I understand correctly from previous posts: Your B12 was 250 about a month (or longer?) ago. MMA and homocysteine were tested? Did you get those results?

You took sublinguals? How long for and how long since you stopped taking them? Were MMA/homocysteine tested before you started those?

[Kittycaite in reply to PAS-admin]

Hi . I've been taking sublingual B12 and D3 since about April as hosp said I was low . I did not know about PA back then or that B12 supplements could hinder tests .

I had been using the B12 spray recently to keep me going as I felt so awful . I've stopped over a week ago as I'm awaiting more blood tests and can really notice my decline :/

I have the results from GP but not back from hosp yet :/

The homocysteine needs to be repeated as didn't get to lab in time .

Also is an active B12 test different to the ones I've had here ?

Will try and post pics now .

Many thanks xx.

[PAS-admin Partner in reply to Kittycaite]

Testing will be kinda useless now I'm afraid. You'd have to wait months to get an accurate reading. So homocysteine failed, but the MMA? Or was that also done while you were already taking sublinguals?

Active B12 is another test yes, but also will be influenced by sublinguals and spray.

[Kittycaite in reply to PAS-admin]

Yes unfortunately tests taken when i was using sublingual B12 :/

Having problems posting pics off my dying old phone :/

Plasma Methylmalonate 0.17 .umol/L. Range 0.00-0.28umol/L.

Plasma total Homocystei16.5. umol/L. Range 5.00-12.00umol/L

^ this didn't get to lab in time so needs repeated.

Intrinsic FactoABS 0.41. Range 0.00-5.00.

Plasma B12 .

294. pg/ ml.

Range 197.-771.

[Kittycaite in reply to Kittycaite]

These were GP results . The hosp have only now replied to my 2 requests and I have to send ID etc so this will take a while :/

[Kittycaite in reply to Kittycaite]

From what I can see off the last few years my B12 hoovers 250 - 300 .

The hosp said it was 250 recently in contrast to the GP 294 !?

[Kittycaite in reply to Kittycaite]

Also while I think of it !!

I lose the iron infusions pretty quickly and my friends GP said this was a B12 deficiency ie not being able to hold onto iron . Any advice on this would be great . Xx

[PAS-admin Partner in reply to Kittycaite]

MMA as expected, fine. So they say that homocysteine is not accurate because it was not in the lab on time? right..

B12 : Could be that the GP sent it to different lab, but also B12 can be 10% (or even more maybe) off if you test it twice (even on the same day) Levels are low-normal, or as we say in the grey area. Normally then further testing should be done, which was done, except that it was after supps..

B12 is not needed to hold on to iron. But the B12def can be making the gyn problems worse for sure. Did the sublinguals do anything by the ay, any improvement?

Hopefully the haematologist will give you treatment based on symptoms and the lownormal B12, that would be the best/easiest solution. Or homocysteine is still high, and then you could point at that as proof. And have IF re-tested, and add PC antibodies as well.

Writing a chronology is a good idea, work backwards, put the recent at the top. Write also a list of your symptoms, starting with the worst/strongest ones at the top. And write down what you want to say so you can refer to that during the consults. They scan-read, drs, so putting at the top what is most important works best. Bring some scientific backup but leave that in your bag til needed. Oh and try and ask everything as a question, fe would it be an idea if...could it also be that..? etc. Drs like to think everything is their idea

[Kittycaite in reply to PAS-admin]

Good advice especially letting the Dr's think it's their idea !!

I had tottaly forgotten !! But I was sent to see a neurologist last year in Sep . I'd had a gynea op then was admitted with severe unexplained bleeding a week later and my left side was very numb like it is now ! The neurologist dismissed it as stress !! Despite a history of blackouts , migraines and many falls !! I honestly didn't realise just how many neurological symptoms I've had for years (many for life ) until I read the PA symptoms !!

How accurate are MMA and Homocystein ? What levels show PA . Is there a chart somewhere on this site ? As I don't know what s what .

I'm a luddite with only a crappy old phone for net :/ I will ask a friend to post my test pics up .

All these tests were taken in a local health practice .

Do you think it would be good to go to a specialist blood place ?

I've looked into Viapath at Guys and St Thomas . They recommended an active B12 and repeat Homocystein which in total will cost 165 .!!

I've sent them another email explaining that I was taking sublinguals for months not knowing about PA and also asked for their ranges . I am awaiting there reply .

Many thanks xx

[Kittycaite in reply to Kittycaite]

Ps . As a life long veggie I've taken oral B complex for years. I've had to take iron too as chronic anaemia from teenage years !! My maternal grandmother had anemia , stokes , low blood pressure and died at 60 , my mother ( veggie ) nearly died giving birth to me , required an emergency caesearan and blood transfusion , she had many miscarriages and also rare blood group , anemia .

I didn't walk or talk properly till the age of 3 so I now think I was born with low B12 / PA !! I also had many kidney infections as a small child .

I have taken sublingual B12 a few times over the years with sublingual D3 . My hosp said my B12 and D were low back in Spring so I upped my intake of both not knowing about PA then ! :/

I only found out about PA a couple of months ago !

Martyn Hooper suggested the B12 spray from HnB which I'd been taking a lot of to keep me going as was so weak and spacey . Since stopping it i had another bad fall and have been mostly sleeping for 4 days as too exhausted to do anything . This morning I woke up breathless !! Which worried me a lot as this breathlessness is new this year !!

In my past ive done yogic breathing , a bit of free diving , walk mountains , swim for 2 miles etc . Now I can barely walk to my local shop

And breathe !!

[PAS-admin Partner in reply to Kittycaite]

Start with: pernicious-anaemia-society....

B12def is not same as PA; PA is a cause of, there are many causes. Testing B12, MMA or homocysteine says nothing about PA, for that there are tests for antibodies, gastrine and gastroscopy. Have a look on our website for lots of info on all and in the Pinned Posts here on the forum home page.

MMA is quite accurate (more than B12 itself) bút a good value does not rule out a B12def. In your case there is point in testing anything now, it only costs money. Afraid you have to wait or find a dr that wll treat you based on level and symptoms as is now.

Get the results from spring, maybe you can get treatment based on that.

You can also ask to get tested for PA (antibodies not B12def) also based on your history and symptoms.

[Kittycaite in reply to PAS-admin]

Thanks I will look again as PAS and pinned posts here . Who should I ask for PA tests s ie antibodies ?

Ie GP or heamotolgist?

[PAS-admin Partner in reply to Kittycaite]

Either, but probably both (if 1st doesn't want to)

[Kittycaite in reply to PAS-admin]

I'm on friends phone so can post my results now . I'd really appreciate if someone could help .Xx

[Kittycaite in reply to Kittycaite]

Ha we're having problems posting pics here ! Is there a special trick ?

[PAS-admin Partner in reply to Kittycaite]

Make a new post, (only) then you have the add an image option.

[Kittycaite in reply to PAS-admin]

Ah that explains it ! Thanks xx

[Gambit62 Administrator]

in terms of urology and gynea - you could try searching this site - likely that you will only be able to access the abstracts of the articles but its a good library and its bringing together properly conducted studies etc

ncbi.nlm.nih.gov/pubmed/?te...

I'd suggest looking at links to B12 rather than PA as it is the B12 deficiency that causes the symptoms of PA.

You may have to try different combinations of words and look through a lot of dross before you get to the pearls you are looking for.

As fbirder advises if you do a general search then look for articles that have lots of references to support any assertions made in them and you can also take a look for the reference articles and see what they throw up.

You could also use the NHS sites but, whilst a GP might be more willing to accept them some times I think some of the stuff on there is a bit out of date and a lot of it can be 'one size fits all', when actually we are all different and need to be treated as individuals - both socially and medically

[Kittycaite in reply to Gambit62]

Thanks Gambit62 xx

[Corieg]

Hi. I saw a neurologist a couple of weeks ago to rule out whether anything other than the B12 issue is going on. He actually seems to know something about B12 and believes that my neuropathy is only from the B12 deficiency damage. We will be doing a nerve conduction study and aparantly the results from that look different from B12 damage than neuropathy by other causes.

My GP had had me stop the shots and try sublinguals, but it looks like the painful tingling that I was experiencing while I was still getting the shots was nerve regeneration, so I started back on the shots today.

[Kittycaite in reply to Corieg]

Hi Corieg . That's good to hear . Glad you're back on shots now too ! Do you have a confirmed diagnosis of PA already ? Did your blood confirm it ?

My GP wants a neurologist or heamotolgist to diagnosis me first despite me being highly symptomatic :/

Does the nerve conduction test show up damage to mylial sheath ? Can't think of the right name for the sheath !

Did you research the neurologist yourself ?

I've rang a few private ones who said see a heamotolgist ! :/ Thankfully one lovely secretary of a private one said best to go NHS as tests are very expensive and best to try and get heamotolgist and neurologist in the same hosp ( which i have now requested )

If your neurologist is in London or in the south could you PM me there name please ?

Just in case mine turns out to be awful as I've no idea who I'll be getting yet . Can only hope they listen and are knowledgeable like yours !!

Where the tests similar to the GP ie tapping , walking heel toe , looking at their nose while they move fingers etc ?

I'd completely forgotten !! But I was sent to see a neurologist last year . I'd had a gynea op using ( nitrous oxide ! ) then had was readmitted in hosp a week later with severe bleeding and also numbness on left side like I have now !

The neurologist dismissed it as just stress . The CAT scan said normal for my age . I shall bring this info to the new neurologist .

I definitely feel I have nerve damage now :/

Many thanks xx

[Corieg]

I'm actually in the US, not UK. I was lucky because he is just the local neurologist that my GP referred me to to rule out whether anything else is going on.

No, I don't have a confirmed diagnosis of PA. Haven't even done the test since my GP says that the treatment is the same (lots of B12) whether PA or another cause for low B12 and the test is so often a false negative. I went in with symptoms of numbness and tingling and the blood test did show low B12, though.

It's clear that I'm not absorbing the B12 properly based on patterns of symptoms when I was doing shots every other week vs just doing sublingual. As I understand it, there could be other causes than PA for that.

The initial exam with the neurologist was similar to what I had previously done with my GP, but much more thorough. He tested for lighter sensations on hands and feet (took a wisp of cotton and brushed it on me), pricked me lightly in the same areas, and also used a tuning fork to test for vibration sensing. All of this showed neuropathy in my hands and feet- mild, but definitely there. The tests for balance and such were all normal.

Best of luck! I'm not sure why you all seem to have so much trouble getting treated for B12 deficiency in the UK.

[Kittycaite in reply to Corieg]

It certainly seems to be an issue in the UK !! I do have some theories but won't post up !!

I'm glad you're on the way to getting proper help . Here's to your further healing ☆☆☆