Hello! New here and like lots of you going out of my bloody mind trying to deal with what I think is b12 deficiency (levels 237, been vegetarian sometimes vegan for 28 years) but my consultant believes to be everything under the sun other than that... Had brain scan/ clear, got the results of full spinal MRI in a couple of weeks. But anyway, what I wanted to ask is how do you inject yourselves? Where you taught? I'm currently taking 3 X Jarrow sublingual 5000mcg a day... Have done so for a few months. I've been unwell since February. Most numbness has gone but tinnitus is awful, fatigue terrible, and now the pins and needles (improved) have been joined by weird tremors and pulses. Can anyone share some of their recovery story using supplements rather than injections? It's been 4 to 5 months now and still struggling so much (I have 2 small kids) The mental and emotional symptoms are by far the worst. I'll be fine some days, awful others. I hope you are doing okay and well done for being proactive and helping yourselves and being there for newbies like me! X
New here and so relieved to find you ... - Pernicious Anaemi...
Pernicious Anaemia Society
New here and so relieved to find you all. B12 help, advice and reassurance needed, please!!
Hi goldlion welcome to this community.
I'm not a medically trained person but given that you are a vegetarian/vegan have you considered asking your local doctor to prescribe a course of B12 injections to be administered by the practice nurse. These should be given until your symptoms have gone.
Any GP worth his salt would know the dangers of B12 deficiency with your choice of diet and should be amenable to helping you. I'm assuming you are in the U.K.
I wish you well.
Thank you for replying Clive!
I have pushed for b12 treatment every appointment but it falls on deaf ears. 'You are well within normal range' they say... I say I think it's more complicated than that and they just cut me off saying that there are very serious things to rule out first. Like b12def isn't serious... I could not feel my fingers at all for weeks and was struggling with one leg that felt like it wasn't quite attached to my body properly. That comes and goes now. I won't go into a monologue about every twitch, tremor and weird sensation I've had over the past few months tho as I guess you know all too well about them yourself. But the tinnitus, oh my gosh, it's a killer.
Thanks again,
Anna
Same here with tinitus Anna - it IS a killer. Totally horrible and very hard to live with. Next time your Doc says you are 'within normal range' give him a blow by blow account of all your symptoms then ask him if HE would put up with such ill health and look after two small kids. I think not. What an idiot. The ill informed attitude of some of these GP's is beyond belief.
Yes... My level is 237 but my consultant says that's 'absolutely no where near deficiency' so hey ho 🙄
Hope things are getting better with you. 🙂
You are well within normal range' they say... I say I think it's more complicated than that and they just cut me off saying that there are very serious things to rule out first
Ask them if they know what the word 'pernicious' means. Then ask them what could possibly be more serious than
deadly; fatal:
Am on B1, B12. Supplements, (along with D, as there was none, & Folic Acid, anemia). What I've first noticed is terrible stomach pains and continued diarrhea, I cannot be far from a bathroom, and it's horrible as I cannot figure out which is doing it. Iron, folic acid, normally constipates, but not here, and the D is 50,000 IU ONCE a Week, so I've not figured that one out yet. Hope you get to feeling better, my tinnitus has lessened and the shakiness has gotten worse, fatigue is a little better, not alot, and I've noticed I don't get GOOD sleep. I hope this one report on supplements helps & that others answer, too.
HI...Have you had a coeliac test?
Funny enough I was supposed to have one in a couple of weeks but called it off as haven't eaten bread or pasta much for many years and having to eat it in order to have the tests was stressing me out too much! I am waiting for results for MRI full spinal and want to get that over with first. Also, I have improved since Feb and was super paranoid about reversing all the hard work I'd put into getting better... I have had a reaction to bread etc for about 15 years I think but thought it was just an intolerance.
Thanks!
Thank you! It's all very confusing and I could spend a fortune on trying out so many things... But keep the faith, we'll get there in the end!!
It makes me so angry when I hear of money spent on tests due to doctors inadequate knowledge. I had loads of tests and finished up with a private blood test of 253 and expected to treat myself. I took loads of research from Internet and showed it to my GP who looked embarrassed and immediately offered injections and I have never looked back........I would say take the evidence and try your doctor again
I tried the sublingual and also the patches. The sublingual didn't last and the patches caused severe skin irritation. I have been using Vita Sciences Vitamin B12 Methylcobalamin skin cream for about 7 months. comes in a pump and is applies to the inside of the wrist. Sometimes more than once a day in the beginning. Each dose delivers 320 mcgs of vitamin B12, 120 mcgs of vitamin B3 (niacin), plus 10 mcgs of folate in one pump. It helped a lot. But I did some research and found therapeutic dose of B6 (folate) is 1-4 mg not mcg. So I added Life Extension Optimized Folate L-Methylfola 1000 Mcg Vegetarian Tablets.Both available from Amazon. I noticed major improvement the next day, My mind begin to function, tingling decreased. Slept thru the night. ankle swelling diminished. No longer felt like I was running in sand (great deal of effort for minimum results). I have decreased the injections to 2-3 weeks. Still have some off days but not so many.
But I did some research and found therapeutic dose of B6 (folate) is 1-4 mg not mcg.
I'm m not sure where you did your research but most health professionals would recommend no more than 800 mcg a day.
If there are no problems, 800mcg is about right. the 1-4 mg is recommended for p.a. as a therapeutic the first year. see mayoclinic.org/drugs-supple...
Taking b12 by itself can deplete folate levels but taking it will also mask a folate problem unless the medical practitioner is experienced in interpreting CBC (RDW and hemoglobin) P.A. can cause malabsorption problems. Some P.A. patients only absorb 70-80%. Folate is a b vitamin and water soluble, which makes it difficult to overdose. It does however seem to help P,A, patients absorb and utilize b12. '
Most of us are here looking for help because the medical practitioners are following recommended practices and it is not working for those of us with P.A.
1-4 mg is recommended for p.a. as a therapeutic the first year. see mayoclinic.org/drugs-supple...
I can find no mention of PA in that link.
I'm not sure how taking B12 can deplete folate levels. Reference needed.
PA does not cause malabsorption problems. Reference needed.
How does PA cause people to only absorb 70% of folate? Reference needed.
Folate does not help PA patients absorb B12. Reference needed.
Yes, most of us are here because recommended practices are not working. That doesn't mean it's a good idea to invent 'facts' and to spread those inventions about.
Just to show what I mean by references:
High folate can be harmful in individuals at higher risk for cardiovascular disease and cancer. ncbi.nlm.nih.gov/pmc/articl...
High folate speeds up cognitive decline in the elderly. ncbi.nlm.nih.gov/pmc/articl...
High folate intake may increase the risk of breast cancer. nutritionreviews.oxfordjour...
Note that none of these studies should give cause for concern. But, as somebody at higher risk for cardiovascular disease, I shall be sticking to my 800ug a day.
Like many other things, what works best for you may not work as well for others.
Any one with PA needs to work closely with their physician
I am glad that you are doing well on b12 alone. It wasn't enough for me. My GP told me long term untreated PA could cause absorption problems for other nutrients depending on what caused the PA. If it is because immune system destroying stomach cells or other gastro problems, malabsorption is to be expected.
medicinenet.com/pernicious_...
You mentioned the recommended doses for folate for I gave you a link on higher doses of Folate. The article mentions just anemia.
The first link you listed is author published. It mentioned High levels but did not define what the high levels were. When I traced the references cited the study used, combination of b12, folate and 30- 50mg of B6, That is a lot of b6.
The second link on cognitive decline took me to the first link. I did find
ncbi.nlm.nih.gov/pmc/articl...
The following are also references I used.
hopkinsmedicine./healthlibr...
nhs.uk/conditions/anaemia-v...
nhs.uk/Conditions/Anaemia-v...
umm.edu/health/medical/altm...
ncbi.nlm.nih.gov/pmc/articl...
naldc.nal.usda.gov/download...
Any advice in this forum should be personally reviewed and discussed with your doctor. I wrote what worked for me. No, I am not a health care professional. My career has been spent in research and data analysis,
,
I am glad that you are doing well on b12 alone.
There you go, inventing 'facts' again.
PA does not cause absorption problems. Gastric atrophy causes PA and can also affect the absorption of other nutrients, mainly those that require an acidic environment.
But saying PA causes absorption problems is like saying my big feet cause me to be tall. Obviously they don't. However, what causes me to be tall is almost certainly also what gives me big feet.
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Hi goldlion,
Sorry you have been feeling so ill. I too started on Jarrows sublingual lozenges. It did work for me but wore off so I was taking up to 10x5000 mcg day! Expensive as well as annoying, so started self injecting several weeks ago. My symptoms are continuing to improve as I rarely have a lozenge now as well. I was at first but now I inject weekly with 5mg of methylcobalamin into my thigh muscle. Having said that I injected twice last week as had a return of symptoms. Think that's the way it goes, never be perfect, but I hope it can get even better.
There are you tube videos on how to inject, I use the z track method. Loads of members here have been doing it themselves for longer than me, years in fact, so can give you better information. If you decide to do it there will be lots of advice on here where to buy it. I get mine from a charity and fixed needles from medisave.co.uk it really is a lot easier than you think and not as scary! I would imagine that taking 3x5000mcg a day is not a huge dose for you. Try taking more if you want to avoid injections right now. I took 10 a day for a long time and you can't overdose on it. There is a mouth spray too which I used as well. I hope you feel better soon.
Thank you so much for your reply. The sublingual Jarrow are causing a lot of irritation under my tongue even now and the teeth around there are super sensitive when the gum has stated to recede as it's so red, ulcerated, and inflamed. Did you get that problem? But hey, that's the least of my problems! Did you find your recovery to be very up and down?
Anna
Yes, definitely up and down, down at the moment! Some people use the sublingual lozenges in the side of their cheek. Although there are both oral and nasal sprays as well as patches if you want to try them.
I had no problem with the lozenges though, even taking 10 a day! I'm lucky (?) As I don't have family or children like you do. I don't think I could cope, it takes me all my strength to look after myself! Good luck.