Stuck in Time in the US

[Volsfan918]

Hi guys, I have a question. I was diagnosed back in February with PA. My B12 was 94 pg/ml and I tested positive for IF antibodies. I was presenting with neurological symptoms. Classic off balance and short term memory problems. Basically I had pretty much classic PA symptoms all around. My GP had me do daily jabs of cyanocobalam 1000mcg got 14 days, then I did weekly jabs for 8 weeks and then monthly. So, I went from April 1 to May1 without an injection. I did inject in May 1. I had my 3- month follow up with the GP on May18. She did another B12 test just to check because I was still having symptoms. We both expected the numbers to be really high and she told me not to worry if they came back high because that’s what she wanted. Well, it was a big disappointment when my number came back at 188 pg/ml with 180 being bottom of normal. So, she’s having me start over with the daily/weekly/monthly routine. I am happy to have a reason for not feeling much better but was disheartened also. Is this normal? Does it normally take this long to get those numbers up? Any advise or encouragement is much appreciated as my family is having a difficult time understanding all of this. Here in the state’s people associate B12 injections with celebrities and fitness people trying to get a burst of energy. They don’t realize how bad it is if you don’t have the appropriate amount in your body. Thanks for reading and encouraging!!!

[Cherylclaire Forum Support]

Your GP at least knows enough to expect a high result, which already makes her one of the better ones. It also seems like a sensible enough regime. However, with neurological symptoms present, in UK the medical guidelines are to stay at an every-other-day frequency until no more improvement can be gained (NOT until you get worse again). This would be better as an agreement to follow symptoms as indication - and I think your GP would be amenable to this regime. Meanwhile, an appointment with a neurologist would be helpful.

Yes, you are right to expect a higher serum B12 result.

Your GP might want to test your methylmalonic acid (MMA ) which links with B12- and without which, will start rapidly building up in bloodstream. So when B12 is replete, this MMA should link up again with the introduction of B12 and soon drop down to a normal level. It should be there by now, but may not be: there may be a functional problem, although this is generally seen with a high serum B12 level. It is thankfully rare to have functional problems at cell level, but still worth looking for.

She could also check for renal problems.

Also likely other problems: folate, ferritin and vitamin D can be low- or below-range. Thyroid can struggle too.

It could just be that, given how low your B12 level was, and how long it takes to get that low, you need to stay at the more frequent stage for longer.

Celebrities and fitness folk here also seem to think they can get instant youth and/or energy from B12 - making it very difficult for people here with real B12 deficiency. Especially those who need more than the 6 loading injections within a month and then 1 injection every 3 months that is the usual routine here. (This despite what I said about the frequency for those with neurological symptoms. ) Makes the nurses administering the injections highly suspicious !

On the Pernicious Anaemia Society website, there is a useful sheet of paper: Pernicious Anaemia Teachers' and Lecturers Information Sheet. When I was teaching, I stuck it up on the lecture room wall. It lists some of the symptoms that are most difficult for friends and family (and students) to understand. This might help you. Plenty of other useful information there, too, although some of it restricted to members.

[Volsfan918 in reply to Cherylclaire]

Thanks for the quick reply. She has done a good job following up on all the other bloodwork involved and everything has come up normal, not even toward the low end of the spectrum. She has been awesome. I did have a brain mri with contrast which showed a few white spots and she has me an appointment with a neurologist, first available was October. She had also ordered a cervical spinal mri. I had a triple fusion about 6 years ago so I have a history. She wants to make sure there’s not another reason for my off gait, balance and other neuropathy problems. I do think she will/would be open to more injections if things don’t improve. I just hate these shots!!! I am self injecting thru a prescription from my Dr. Overall, I feel very lucky considering the obstacles that you guys in the UK are experiencing.

I’ll definitely look up the technical sheet, maybe even post it on the fridge. Lol

Thanks again!

[Nackapan]

Hope you get more regular b12 injections and get back on track soon. Then don't change a thing

All doctors seem to want us to be on 'the regime ' set in their guidelines.

Which i think is monthly for cynocobalamin .

In a way lucky your bloods are clearly saying its not enough for you.

Symptoms though not numbers the most important thing here.

So I'm sure you will be put back to a more frequent regime and stay there.

No rush to get them further apart

Just concentrate on getting well.

If you manage to then don't be tempted to widen the gap too quickly.

Or if at all.

Most of us on here do not fit the regimes set.

Some stay on daily, every other day ,weekky whatever works for them.

Remember you cannot overdose on b12.

[Volsfan918 in reply to Nackapan]

Thanks for the encouragement. I just hate these shots! Lol. I guess I better get used to them because I sure do feel crappy right now. Hopefully, I can start feeling better soon and my attitude toward the injections will change. Thanks for the reply and encouragement!

[Nackapan in reply to Volsfan918]

I choose to do subcutaneous injections at home I still have IM at the surgery in the hope they may be more effective and last a bit longer

I've done this for just over a year now.

Occasionally I think the IM one made a good boost but overall last no longer in my system to sc ones.

Going from notes I can only report that at times the IM one seems to go in quicker .

So what I'm saying it's a option.

I find sc fine.

No one likes this injecting lark.

As my husband says ...who injects 4 x a day with insulin ..it's the getting well and staying well and for him like brushing his teeth.

He has to calculate the dose each time.

But the actual injection is a bit easier as less fluid and a pen.

He occasionally forgets ...thats a true sign of feeling okay .

I never forget!!

But Hoope thus is the one to get these neurons connected in my brain.

I also had brain scans.

My bad balance and vertigo was caused by the b12 deficiency.

I have white lesions with t2 I think flares all over the place.

Hoping your scans are okay.

Mine deemed

'Normal for my age '

Sounds like all the right things being done. Things need ruling out.

Medics still csnt believe b12 deficiency PA can causes such awful symptoms.

[Cherylclaire Forum Support]

A good supportive GP and an early diagnosis is a really promising start.Your GP has already asked for the first things a neurologist would ask for.

The brain and spine MRIs. Spot on.

She probably wants to ensure early that your spine is not showing any myelin sheath damage or delamination. This protects your nerve bundle. In which case, with early detection and frequent injections, repair is possible. Takes time though.

Nackapan's right - don't rush to change anything if it's working. No-one likes these injections. Madonna, maybe.....

[Volsfan918 in reply to Cherylclaire]

Lol. Thank you!!!

[fbirder]

That B12 level after injecting does seem very, very low. I'd follow up Cherylclaire 's suggestion on getting checks on renal function.

The kidneys work in a strange way - when blood blows through the kidney all the small to middling molecules get filtered out, leaving just the proteins. Then, all the stuff that the body wants gets reabsorbed. The rest goes out in the urine.

It's like cleaning your house by moving everything except the furniture onto the lawn, then bringing all the stuff you want to keep back inside.

Anyhow, the reabsorption of B12 has a limited capacity. For most people that capacity is high enough to keep levels in the blood very high. If your kidneys had a much lower capacity then that would explain your low levels. It might just be that one transporter that doesn't work, or it may be an early sign of other problems.

It's just a theory, but it can't hurt to get your kidneys properly checked.

[Sleepybunny]

Hi,

A few links about B12 deficiency

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has some members in other countries.

pernicious-anaemia-society....

There is a helpline number and an online contact form.

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

Films and videos about PA and B12 deficiency

PAS conference 2019

pernicious-anaemia-society....

Films about b12 deficiency

b12deficiency.info/films/

B12 article from Mayo Clinic in US

(aimed at researchers and health professionals)

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency.

[RLG99]

I was diagnosed with PA 1 1/2 years ago. I had many symptoms including neurological. I'm in the US, my doctor prescribed weekly shots of cyano-cobalamin I felt like wonder woman at first as I had been feeling so poorly for so long. As the weeks went on, my doctor increased the injections as my symptoms were coming back before the next shot. Because of this site and protocol in the UK, she agreed to shots every other day until my symptoms were gone. Despite the increased frequency I wasn't getting better and after about 6 months I was back where I started with all symptoms present. I switched to hydroxo-cobalamin and it's been a life changer. I did try methyl-cobalamin and it gave me headaches and dizziness. I know some say that you will get the same result from cyano, methyl and hydroxo. For me there is no question cyano and methyl were not effective. This is just my experience, but it may be something to consider. I wish you well!

[Fiercepapillon]

I’m in the US too. It took me 6 mos of weekly to get anywhere normal levels. But of course levels don’t equate to symptoms. Whenever I would try monthly, I would drop again. Every 2 weeks seemed ok for 6 mos but then all my symptoms came back despite levels being high. No longer check levels and switched to a naturopath and inject weekly. Finally along with increasing my ferritin, I feel normal and my hair has stopped falling out too. I workout a lot so my doc thinks that might contribute.

[Litatamon]

Don't have anything to add besides my extreme and petty jealously for you having such a brilliant GP!