Ongoing symptoms

[Maxie902]

Hello, I was diagnosed with PA about 16 months ago. My cycle for injections has been reduced slightly following lingering symptoms following a delay in getting treatment back in the first lockdown. I had no symptoms leading up to my next injection, but this time I had a bit of fatigue, felt good on the day of injection and since then have had ongoing and increasing symptoms, the main ones being fatigue and aching hands, feet and lower limbs (at times quite painful). Getting nowhere with GPs (never speak to the same one twice), and now they are saying because of my high serum level that I can’t be B12 deficient and that it could be fibromyalgia ??

Would welcome any thoughts, as the symptoms I have are similar to the ones I had before diagnosis and at other points. I know the serum blood test is only half the picture but the medical profession don’t want to know..... I need some advice. Thank you.

[wedgewood]

As you have been diagnosed with P.A. , you must have injections often enough to keep any symptoms at bay ( that different for everyone ) .Your b12 readings will be high and must stay high . Having a high reading whilst on injections does not mean they should be discontinued . There is no need for your b12 to be tested - as it states un the guide lines — if only the doctors would refer to them .Do write to your doctor and ask for the latest guide lines to be referred to .

If that does not work, I suggest self-injecting B12 at a regularity that keeps the symptoms away . Most of us on this forum need to do that . It is easy and cheap .

[Maxie902 in reply to wedgewood]

Thanks Wedgewood. I have picked up these points from the Forum, which I have found extremely helpful in expanding my understanding of PA. My GP doesn’t seem to want to know. I am now working with a nutritionalist (at my own expense) who is very knowledgeable about B12, and she is doing a nutrient test including the MMA test. So that may help make a case. I haven’t quite got my head round self-injecting, but I will definitely look into that if I can’t get my GP on board.

The one thing I was curious about was that my last injection seemed to have no impact on my symptoms other than on the day. The next day onwards my symptoms got worse and improvement has never kicked in (as it did eventually after my delayed injection back in May). Can that happen? Many thanks for your advice.

[wedgewood in reply to Maxie902]

It didn’t happen to me , but over the years (6) of reading posts on this forum , I can see that many P.A. patients symptoms get worse before they get better , when treatment with B12 injections starts . It maybe the nerves reaction when first “ waking up “ . It’s fairly common . So please don’t despair .

I have embraced self-injecting , because I got nowhere with my GP or any of the GPs in the practice . When you are feeling most unwell , it’s just too difficult to do battle with your doctor . It’s great to know that you cannot overdose on B12 ( although my GP said it was “toxic “ to have an injection more often than 3 monthly!) . I need to inject weekly to keep well . There is no way I could have that from the NHS . But it’s good to know that there is the self injecting possibility if all else fails . All the best to you .

[Maxie902 in reply to wedgewood]

Thank you Wedgewood. My nutritionalist has advised sub lingual tablets in the meantime, and they seem to be helping. But I will investigate self injecting if all else fails. Best wishes

[wedgewood in reply to Maxie902]

I tried the sublingual , the nose and mouth sprays and patches , in my desperation, but none worked for me . Most P.A. patients are only helped by injections. It’s great if the sub-linguals work for you. . 👍

[Haveitall]

I’m new to this forum and I’m so grateful a friend convinced me to get tested. The insane thing is I have two hematologists and they’re both refusing to prescribe. Duh! I have Lyme, all 3 MTHFR’s and the ice cream on the cake is I had gastric bypass surgery in 2015 not knowing I had Lyme. My B12 is always very high but my iron numbers all low and RBC was 3.85 today. One doctor said there’s no relation between gastric bypass and PA. It’s really sick when we’re smarter than our doctors. I’m self injecting. I had every symptom in the book, collapsing, couldn’t get words out, sudden drowsiness, clogged ears, pins and needles in hands and an utterly exhausted. I still in my second week of loading.

[Bonjourtristesse]

Did you have loading doses Maxie? If you have neuro symptoms the recommendations are every other day until no further improvement.

I did not realise my numbness and pins and needles were b12 related until my symptoms started getting worse and then better. I self inject every other day and had gotten to the point where I sometimes had no pain, no pins and needles and feeling in my arm and foot. I skipped yesterday to see what would happen after more than 3 weeks and I think that was a mistake. It seems to take a loong time to heal nerves if there were issues.

[Maxie902]

I had loading doses last August and am now on a 10 week cycle. I am aware about this advice, but my GP says I can’t be B12 deficient because the haematologist says so having seen my blood serum results (in the 900s). So, I am trying to make a case in other ways.....

[wedgewood]

I’m afraid you can be deficient with a high B12 reading . That only tells you what’s in your blood , not whether it’s where you need it — in your cells !

[Maxie902 in reply to wedgewood]

I know. It is very frustrating. But I am having an MMA test done privately and hoping that will show the full picture 🤞🏻

[Cherylclaire Forum Support in reply to Maxie902]

Well let's hope so, Maxie.

Is it possible that, if you had to wait a long time for your last injection post Lockdown 1, you may have needed reloading to start again ? I sometimes also remember feeling as if the odd injection hadn't "taken".

I think an MMA test could help you.

When I was unresponsive to the usual B12 treatment regime, my MMA was tested ad found to be raised. It should rapidly drop and certainly be within range after loading injections (once B12 replete). As it links up with B12, if there is insufficient available B12, MMA builds up in bloodstream. Mine was found to be raised, so Functional B12 deficiency was diagnosed and confirmed by the lab.

Some other conditions can also raise MMA and need to be eliminated as the cause: renal problems (which can be ruled out by blood test) and small intestine bacterial overgrowth (SIBO) spring to mind. SIBO is more difficult to rule in/out - requires a fasting hydrogen breath test. All of this is available on the NHS .

I had more investigations done by haematologists - who tested my MMA 4 times after the initial result (requested by my GP). It was raised every time - not high, as it probably would have been prior to injections starting. In the end, they decided that this level was "my normal".

In fact, this wasn't the case; last year a DNA consultant had my MMA tested a 6th time: after 3 years, finally my MMA was within range.

Self injecting B12 frequently seemed to have eventually made the difference.

Nothing else had changed, nothing else was ever discovered or diagnosed, so I continue to treat my condition as Functional B12 deficiency as this is the only real diagnosis I have received. I am currently injecting every 3 days, reduced from every other day when I felt able.

Progress has been very gradual and symptoms manageable. Not all have miraculously disappeared. There is a balance to be found for each of us.

Let's hope the MMA test gives you some answers.

[Maxie902]

Thanks for that, Cherylclaire. That is extremely interesting and really helpful. Yes, my thinking is that the delay earlier in the year (on an injection cycle that was probably too long anyway) has led to my increased deficiency and symptoms. Just out of interest, was it a blood or urine test for the MMA?

I have been thinking more about the self injecting option. Would you be able to let me know what the injections are and where you can get them?

Thanks again, and all the best.

[Cherylclaire Forum Support in reply to Maxie902]

Blood test, Maxie.

Self-injection: I inject intramuscularly in thigh.

I know some people here prefer to self inject subcutaneously in stomach which means smaller needles can be used and requires a slightly different technique.

I've used both mycare.de and versandapo.de in the past for my B12 ampoules and get 100 1ml B12 Depot Rotexmedica - for about 75 euros incl p+p. They usually have very good use-by dates, but are also available to buy in 10's.

English translation available if using Google Chrome. I haven't had any problems but not sure what is happening currently with prices/ availability/ exporting to UK what with Brexit and Covid.

I get everything else from medisave.co.uk:

2ml BD Emerald luer slip concentric syringes (100)

BD microlance 3 needles Blue 23g x 1.25" (100) - [ for injecting ]

BD microlance 3 needles Green 21g x 1.5" (100) - [ for drawing up from ampoule ]

plus pre-injection alcohol swabs (if required), sharps bin and washproof spot plasters

which all comes to around £20 with p+p.

If you need more help, or more current info. about costs, it would be a good idea to start a new post with this question- get it seen by more people.

Do you have any medical professional who would be prepared to teach you how to inject safely? My GP suggested asking the practice nurses -who of course looked horrified at the very suggestion !

[Maxie902 in reply to Cherylclaire]

Thanks very much for taking the time to set out all the detail. I am going to have to build up to the idea of self injecting 🥴 - what I really want is to get my GP to understand (my nutritionalist does!), but that is a tall order. All the best.

[Cherylclaire Forum Support in reply to Maxie902]

I understand completely why you would prefer that.

It took me a long time before I recognised that almost every medical professional that I met had no real knowledge of the true range of B12 symptoms, valid effective treatment options or testing flaws, limits and problems. I kept thinking that the next one was worth pursuing because they might turn out to be the one with the answers for me. I think my GP probably felt the same.

In the end I ran out of time; my job was kept open for over a year.

I also ran out of patience; hearing that B12 is"extremely addictive", or "carcinogenic", or "toxic", or about the "euphoria experienced when self injecting B12" was not only a waste of time (you wait months to hear this tripe) but an insult to my intelligence -and another massive disappointment. Plus it starts to get to you as each door slams shut.

So I started self injecting -and stopped deteriorating. Very slowly, saw improvements. No miracles -and certainly no euphoria.

Perhaps, given the situation (and the long use-by dates), you could keep an emergency box and equipment handy as a standby, but carry on with trying to change your GP's mind regarding treatment. Hedge your bets.

My serum B12 is over measurable amount at over 2,000 ng/L. I still get symptoms every day.

I was a teacher, and believed wholeheartedly that if I did my research and put my case well, my condition would be better understood and I would get the treatment I needed to stop me deteriorating. If I said it differently, if I'd been less ill on the day, if I'd met the right consultant, if I said the one key word, or mentioned the right symptom (there were so many), or researched more, or brought the right paperwork with me......

part of me will always think this way. You never really stop being a teacher.