Negative PA Test - way forward

[Madman070578]

I had a low Vitamin B12 (125 mg/L) and low folate.

One of my symptoms was severe pins and needles - particularly my legs, feet and genital areas.

I had 4 loading doses of b12, followed by a further 2 at my request. I started folate tablets after 2 jabs.

I had a IF test which came back negative. Shows I had no antibodies. At that point, my doctor also put me on Vitamin B compound tablets to take 3 times a day.

I still have symptoms (pins and needles in feet, legs, and genitals, although fatigue and irritability has improved.

Can anyone suggest a way forward? Do I try for more jabs if I still have symptoms with no PA?

can anyone send me a link to the ampules and syringes / needles if I fail?

Also, has anyone had any good experiences with Haemotologists / Neurologists in Wales or further afield in the UK when it comes to B12 and advising on jabs? If so could you send me the names in a private message as I’ll look to go down the private route as this is plaguing me.

[wedgewood]

Your doctor should know that a negative Intrinsic Factor Antibodies test does NOT prove that you don’t have P.A. About 50% of PA patients test negative . !!! As tablets are not helping, you should be prescribed 6 loading injections of B12 over 2 weeks . You should ask for injections. , and if that fails , you will need to self inject as members of this forum do .

I’ll send you some information on that if you are not successful . Untreated or undertreated b12 deficiency of any sort can lead to irreversible symptoms ( ( As in my case )

[Kennyatw in reply to wedgewood]

I still haven't done the B12 injection so I'm still taking the B12 pills and I'll wait until I have my next bloodwork done next month

[wedgewood]

The following German online pharmacies will deliver B12 depot single use ampoules to U.K. .

apohealth.de Site is obtainable in English (Union flag, bottom left on my device ) also deliver World wide but not to Australia or New Zealand .

versandapo.de Site is in German . Use Google chrome to obtain translation .

The following brands are obtainable

Panpharma ( formerly Rotexmedica ) b12 depot 1mg x 1ml ampoule ( depot indicates Hydroxocobalamin) ref no 16199653. This is the most popular ampoule used by PAS members .

It is the best value , but sometimes is out of stock . You can then opt to be emailed to be told when it is back in stock .

Pascoe B12 depot 1.5mg x 1ml ampoules- Packet of 10 ref no 07568672

Pascoe b12 depot 1.5 mg x 1ml ampoules-10 packets of 10 ampoules (100)

Ref no 07568695

Hevert b12 depot 1mg x2ml ampoules packet of 10

Ref no 06078368

Hevert b12 depot 10 packets of 10 ampoules- ( 100)

Ref 06078380

When filling out your address on the German online pharmacies sites , do fill in your country first of all . “Germany”: will be displayed , so you must change this with the drop-down list which will appear , — to U.K./ Gross Brittanien/ Vereinigtes Königreich GrossBrttaniens — how ever it may be expressed. If you don’t do this , your U.K. address and post code will not be accepted , and you will end up in a tizzy . We don’t want that ..

Best wishes .

[Nackapan in reply to wedgewood]

Added info;PayPal worked for me last time .

Whereas Amazon pay didn't?

[Miss-guineapig in reply to Nackapan]

Its easy to buy from Etsy too, its UK but a bit more expensive but great service x

[Narwhal10]

Hi Madman070578,

I totally recommend getting printouts of results. Keep an A4 file of like a diary when you had 1st, 2nd, 3rd, 4th doses of 1mg/ml of Hydroxycobalamin and when you had your other 2 injections.

When you had the IF blood test and the result in hard copy. Like Wedgewood said it is a highly unreliable test.

When you started B compound.

Do you have copies of hard copies of Full Blood Count with Ferritin (iron stores), Vitamin D and Folate ?

It is good to hear that fatigue and irritability is improving. Unfortunately, there is no quick fix, it is a journey. You still have Neurological symptoms. Similarly, there are no neurologists or haematologists who specialise in P.A./Autoimmune Metaplastic Atrophic Gastritis (is its proper medical name)/B12 deficiency.

It is worth joining the P.A.Society in Bridgend who are international and based in Bridgend, South Wales. Through their newsletters you will hear the big names who take a very keen interest in it.

Many of us have been helped by wedgewood. A couple of days ago, I was speaking Spanish and no guesses what I was buying Over the Counter ?

Diolch yn fawr.

😉

[Madman070578]

Diolch!

I’ve already signed up to the PA society (good to see some good work being done in Wales) we upon finding this forum as I’ve learned so much.

I’ve been hunting down specialists (Privately) and I’ve only found one in the UK that mentions B12 deficiency as an interest.

[Narwhal10 in reply to Madman070578]

Is it in the Cambridge area ? He has received lots of thumbs ups.

So, Madman, I’m a qualified Midwife who was taught nothing about it but my Strategic Plan is back to university part time next year. Then full time for 3. Then open the ‘Clinic’ in South Wales. I have so much to learn and every day is a school day.

In 2020, I was practically bed-bound so, I think we deserve someone who knows what it truly is to have the illness. Right got to do some Homework do not want to be a Slacker. 🤓

[Madman070578 in reply to Narwhal10]

No it wasn’t, this was a female consultant on the outskirts of London. Any chance you can message me the name of the consultant that has had lots of thumbs up?

A clinic to support Vitamin B deficiency sufferers? If so I’ll be a client!!

[Myoldcat in reply to Madman070578]

Hi, I would be very interested in the details of this female consultant near London if possible. Not quite at referral point yet but preparing ahead! Thank you.

[Rexz in reply to Narwhal10]

Aww Narwhal10, we were bedbound together in 2020! 🤣

[Narwhal10 in reply to Rexz]

Oh Rexz,

Me, you and loads of Medical books. Grrr - 🐯🐯🤪

[Nackapan in reply to Madman070578]

Could you pm me to say who please. I've never found one .I did come across a neurologist by chance I saw privately for migraines.

He happened to be b12 deficient himself so had z personal interest and read all of the 'papers' he stated not many.

[Darkvarnish9 in reply to Madman070578]

May I also have the name of the specialist that mentions B12? Thank you.

[Mixteca in reply to Darkvarnish9]

I'll message you details of one I and others used.

[Madman070578 in reply to Mixteca]

Could you message that to me too please?

[Mixteca in reply to Madman070578]

Did that too

[Myoldcat in reply to Mixteca]

Could I be very cheeky and also ask for the specialist's details? Thank you so much.

[Madman070578 in reply to Myoldcat]

I messaged you on here with the one I found outside London.

[Myoldcat in reply to Madman070578]

So sorry, I'm new to this site and don't seem able to find the pm's!

[Mixteca in reply to Myoldcat]

👍🏻

[Myoldcat in reply to Mixteca]

Found it, greatly appreciate that x

[Spritze]

Has your GP ruled out other causes of pins and needles such as nerve compression due to bulging disc etc ?

[Madman070578 in reply to Spritze]

No yet, but because some of the pins and needles sensations have responded to the jabs, and because my levels were so low. Thank you for a new route of investigation.

[Kennyatw]

I had a really low blood test for the B12 and my doctor said she wanted me to start giving myself B12 injections but I'm not sure if I want to do that

[Madman070578 in reply to Kennyatw]

Just out of interest, are you in the UK?

[ReallyWondering in reply to Kennyatw]

Do it. No harm in getting the shots, but can be severe harm when B12 is low. Or try the sublingual B12 first for a week and see if it makes a difference in your bloodwork.

[Kennyatw in reply to ReallyWondering]

I'm supposed to give myself a shot behind my thigh twice a week but it's kinda hard to get to

[ReallyWondering in reply to Kennyatw]

I give myself a shot in my stomach a few inches to the left or right of my belly button. I alternate (if I can remember which side I did last). My nurse that showed me is a diabetic and she gives herself shots that way. I put the needle in at a slight angle. I can do it sitting down, it's pretty easy.

[Hockey_player in reply to Kennyatw]

My husband gives me shots in my arm. Do you have someone who could help?

[Kennyatw in reply to Hockey_player]

No not that I can think of

[Mixteca in reply to ReallyWondering]

Treat the symptoms, not the blood results. Doctors do that.

[Kennyatw]

No

[ReallyWondering in reply to Kennyatw]

No what?

[Kennyatw in reply to ReallyWondering]

I don't live in the UK

[ReallyWondering]

JSYK the pins and needles might not go away immediately. I've been on weekly injections for three months and still have them. They seem a little less, but still there keeping me awake at 4:00 am. I tested positive for IFA and am in the process of switching from a general NP to a hematologist in the US. I think I need more than a shot a week, but my NP says not to do it. I don't have any faith in her as it was my idea for the IFA test in the first place.

[Mixteca in reply to ReallyWondering]

You do need more frequent injections. EOD or even daily with neurological symptoms.

[ReallyWondering in reply to Mixteca]

It’s worth a try since there’s no harm in it. I need to order some online then. My NP will only prescribe weekly. She also said to see a hematologist now. I don’t know why she waited three months to tell me that.

[Mixteca in reply to ReallyWondering]

No harm indeed and everything to gain. She doesn't have much of a clue methinks or would've given the same advice.

[CobaltLab]

Consider joining the Vitamin B12 Wake Up group on Facebook. The information on that site really helped me.

[ReallyWondering in reply to CobaltLab]

I’m not seeing any group for b12 that says wake up?

[Madman070578 in reply to ReallyWondering]

Same here…. I can’t find it.

[CobaltLab in reply to ReallyWondering]

It says that it’s paused until 1/2/24. Could that be why?

B12 Wake Up Facebook site

[CobaltLab in reply to ReallyWondering]

The site says that it’s paused until 1/2/24.

[Kennyatw]

My doctor said to do it in the back of my thigh but do you think it would be alright if I did it in my stomach or my arm?

[Mixteca in reply to Kennyatw]

Look at the pinned post about injection technique, the Nursing Times one, not sure if both are on there. Either intramuscular or subcutaneously.

[Kennyatw in reply to Mixteca]

Well I'm gonna wait until my next bloodwork is done and then I'll decide what to do. If my level is up I'm not going to be doing the injections