Hi there. I heard through the grapevine (and not from allopathic docs) that B12 injections can help with fatigue, mood, and other co-occuring symptoms we all face (in the autoinflammatory and autoimmune worlds). I had my first today to try it and the nurse said it would be fairly soon that I would have a surge of energy. I am not feeling what she is describing. Maybe she is used to treating people who are not as sick as I am. Has anyone tried these shots? Is it worth getting more to keep attempting to see a benefit?
B12 Injection? : Hi there. I heard through the... - Behçet's UK
B12 Injection?
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Stm252
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Hi Stm252
I too have enquired about this with my GP, especially as my B12 levels are either just below normal or at the lower end of normal.
I thought this was impacting on my fatigue, however, my GP has assured me that unless your red blood cells are affected (anaemic) the B12 injections would not benefit fatigue symptoms.
Like you she gave me a single B12 injection and I had no benefit from this either.
I was told many years ago that they are used by some doctors as a placebo effect. The red colour and injection makes people think they are having a curative effect.
Hi
I have a B12 injection as I don’t absorb this from my food. I can’t imagine that it would be of any benefit unless this was the case.
Also the injection is given every 3 months here in the uk.
I have issues with my gut. So its questionable if I do. But again I didnt feel anything. Here though people are getting them weekly!
Hi. I live in the UK & here you can only have B12 injections if you don't absorb it from food due to illnesses like Behcęts. To start with I had injections daily for a week then weekly for a month and now 3 monthly. I know when my next injection is due as the fatigue becomes much greater & energy levels are virtually non existant for about 7-10 days before I have my next injection. I don't think you would gain any benefit from just one injection. Even with regular injections I still get very tired & am usually in bed by 8pm because I just can't keep going. I hope you find some way to help the fatigue, it really is quite debilitating isn't it. All the best.
Hi Lorrie
Out of interest, did you GP tell you you had low red blood cells (pernicious anaemia) due to low B12 causing your fatigue?
My red bloods cells have always been normal even when B12 levels were low therefore told that was not causing my fatigue.
Hiya, I have a lot of problems with my blood counts & they seem to drop when I'm stressed or ill. I recently spent 2 weeks in hospital because my blood counts were so low I had to have transfusions. I was in isolation as I was neutropenic. My white cells had dropped from 184 - 6, platelets fromm 200 - 20 & red cells were unrecordable. Quite often my B12 levels & Vitamin D levels are low when red cell count is acceptable. Do you have to have regular blood tests? Fatigue is unfortunately one of the side effects of Behcęts & I find I can do very little when it's bad. Like I said I go to bed very early due to severe tiredness. It's not uncommon for me to fall asleep while I'm eating my tea or talking to someone. I can honestly say I've never known tiredness like it. It will just suddenly hit me & that's me finished until I've had at least 10 hours sleep. All the very best. X
Hi,
I have these B12 jabs every 3 months as i have had my large intestine removed due to ulcering
If you have Colittis, Crohns, Bechets and it affects Gut or Digestive Tract you are normally given these shots as you will find it very hard to impossible to absorb it on your own from diet
My understanding is, it is necessary for your Mental and Nervous system more than giving you an energy boost!!
Ive been on them 20 years and have never noticed an instant energy Boost ...
We are all different but my Consultant did not mention this effect at all, only that they are a necessity for your bodies chemical / vitamin balance
Kev
Hi Stm252 I am on Neurobion Shots (Vit B1,B6,B12) I was told by my Specialist that it would help with the nerve pain I have from neuropathy. I must confirm that I do get a boost of energy from the shots too. So far so good. Excess vitamins are always passed through urine & the body takes what it needs only. So no harm done. Alternatively there are patches or the tablets that you can take instead of the shots. However those are slow release. Same principle🤞
Hi, I had regular B12 injections for four years. I never had a surge in energy but by the end of the second month I was exhausted all the time. I did some research and joined a Facebook support group. I went to my GP with all the data and to my surprise she was well aware of the information but refused to give me injections more frequently due to NICE guidelines. I decided that I would self inject. I ordered my vials of B12 from Germany at a cost of £70 for 100, and went to my local Drug and Alcohol unit to get syringes,needles, sharps boxes and advice. I really have not looked back. I am still fatigued but not the bone aching, cannot get out of bed fatigue. Last year I ent on holiday for the first time in years. Previously the mere thought of packing, travelling, unpacking woukd make me cry. I even managed short walks on the beach most days. There are some GP’s and Consultants who will prescribe additional injections for you. Good luck
Thank you!
i have pernicious anemia now. Diagnosed this past May. Apparently I have been b12 deficient for years. Colcrys, chronic inflammation are just two of behcet's specific issues which I feel did not help my situation.
I did not feel a difference until my third shot (3rd month). It is a world of difference now. I am sharp now. Recalling things better, like super honed in and not forgetting things anymore.
I was also supplementing orally with methylcobalamin sublinguals. I highly recommend regardless.
so no- one shot wont do sh*t.
If your levels are under 400- get the shot. PCP or hematologist will prescribe. The 150 lower limit is BS.
I just checked. My levels was 303 when the endocrinologist checked last. She called it normal even though it was quite low IMHO bc 250 is the cut off for not normal. Granted I was still in range here but I do think this is a contributing factor to my major fatigue.
Ive read too many studies that have under 350 as "not normal" -aka contributing to neuro issues.
Get the B12 on a monthly. I bet youll feel much better in a few months.
Get the PA test too.
good luck-
My GP said no. So need to figure out another solution ;( so frustrating.
Find a new gp. Seriously. My pcp told me I didn’t have pernicious anemia just by looking at me- and wow GLAD I LISTENED (sarcasm).
Hematologist and gastro might offer better help. It’s a blood test. It’s your body. It’s not Percocet.
If all else fails you can still do the sublingual tablets. Allow at least 6-8weeks though. Things take time.
I told him what the numbers were. He was willing to do another blood test. Which he ran. I quoted what you said regarding the 250. He agreed that was on thr lower end of normal so I'm not sure what the issue was.
I will post helpful link at the end of my rant 
I had a really hard time with dr's to run the pernicious anemia panel as I had already started to supplement. Serum levels are not an accurate reflection of deficiencies. I went through: my rheum who then pushed a PCP, who pushed-A neuro, a hematologist (who was helpful and my favorite/picked up slack ultimately- but was justified in pushing the responsibilities to the gastro initially)- and then the gastro. I ultimately ended yelling, yes yelling, at the Rheum and gastro. woops.
Gastro also told me no off the bat- that I didnt have PA, i guess being "thirty and flirty" means you're exempt from autoimmune diseases. SO IF NO ONE TOLD YOU THAT RULE 
but ultimately, I pulled up labcorps test codes on my phone, pointed at my very OUT bw values (printed 7 years of them) and was yelling, "RUN THE FOCKING TEST, I HAVE PRIVATE INSURANCE. THIS ISNT FOCKING PERCOCET IM ASKING FOR HERE."
Yelled at the Rheum on a follow up visit, as the headache of going from dr to dr-for six months- when she could have just ordered the darn BW from the initial visit. Told her my frustrations, ended up getting loud(emotional) by accident about it (which sucks bc she is sweet) but I was like- "You told me to goto PCP. I DID. They shoved me off. Then to neuro, who once heard I had Behcets, wanted nothing to do with me,. Then to Hematologist who wanted to wait for Gastro, then gastro who I had to yell at to order the darn test. I see you (the rheum) more than anyone- and the fact that i kept getting focking pushed from dr to dr. When ultimately- WHY ARENT YOU HANDLING THIS-SINCE ITS AUTOIMMUNE?" She apologized, and I accidentally went savage on her- saying "dont be sorry, just do your focking job." needless to say, last visit, I DID receive stink eye. I honestly couldnt care less, I might change, I might stay. We'll see.
Still under the gastro for prescriptions, might try to change it to hematologist, as they've been SUPER helpful and fast on BW.
Look into hematologist. They seem to care about the blood work values more. Mine was SUPER upset about how low my B12 was years ago.
Other BW values to pay attention to are: high MCH, high MCV, low neutrophils, RBC count, mine were all borderline and then would pop slightly in/out- all indicative of b12 deficiency. I think some people wait until its so exaggerated, and thats not good. Some of these deficiency effects can be permanent (electrical tingles) and i was not willing to wait.
helpful link about the b12:
stichtingb12tekort.nl/weten...
Supplement that is super cheap and helped me not turn to scramble eggs while waiting for Dr's
amazon.com/NOW-Methyl-B-12-...
sorry for the long post- i hope it helps
Loved the rant. Made me just generally feel all around better. I thought of you when I came across this article today: ncbi.nlm.nih.gov/pmc/articl...
Yes so much to that article. I went downhill quick. I had shortness of breath for months but attributed to having a bad bout of bronchitis months earlier. I was so emotional and I couldn’t pinpoint why. I started losing balance just standing or walking and noticed it very much at the gym. Couldn’t remember basic recipes. No concept of time or events. My coworker said something to me and I just couldn’t figure out what she was saying and started to cry. The electrical pains were the worst. Made me feel absolute bat sh*t. I was so nervous that the neuro damage was done but it did lessen and reverse itself. Took about six months I think.
I'm hopeful that even taking the tablets you recommended could be helpful. I am clearly low on B12. And I have so many of the symptoms. And so many GI issues so I am pretty sure I am not absorbing it. I am going to heed your statement about the 6 months and not to expect that this will happen overnight (e.g. quick results).
The tablets did help! Things started to subside around 6 ish weeks. I personally stick it in my cheek near the vampire tooth and leave it. I would sip my coffee too. Takes about 15-20 to dissolve. You can’t overdose on b12 so treat yo self
Girl. I will! If the docs wont help me with the injections. I will help myself another way! Done. And done.
Hi rooser1
I have been looking at the few threads including B12 and at the time remembered reading this thread but at that time it never registered... Had a B12 blood test came back high B12 with no explanation from Rheumatologist other than she thinks its healthy... anyway I contacted a Danish B12 specialist who informed me I could actually be B12 deficient and the test result is False which can happen, he has suggested a MMA blood test, just had this done Monday and my GP is running a MMA urine test both are supposed to be some indicator of a deficiency because of this is processed through the body... anyway I wanted to just ask about your comments regards to "Other BW values to pay attention to are: high MCH, high MCV, low neutrophils, RBC count, mine were all borderline and then would pop slightly in/out- all indicative of b12 deficiency" The MCH and MCV are the 2 things I picked up on my blood tests being out in July and September but nothing was flagged by the GP as being wrong so I mention to the Rheumatologist and she then decided to run B12, I guess she was expecting a deficiency and not raised, and now appears not to recognise this could be a false reading and requires more testing to rule out anything sinister or a B12 deficiency. My neutrophils are always dipping in and out and have yet again I have been taken off the Azathioprine because out of range along with WBC and Lympocytes... I really feel now that I have done tons of reading that I do have a deficiency it fits with so much stuff that's going on.
Question is if they do not listen would me taking a supplement help me long term and what is the level should take, what's the comparison to an injection in comparison to a supplements ?
I feel really rubbish as though I am going downhill every so slightly as time goes on, I have gone from doing everything to doing very little and I am hurting everywhere. I have moaned and moaned to rheumatologist that I feel Azathioprine is doing nothing like it used to but I am now left wondering if what I am feeling is B12 issues. An issue I seem to have increased with and nobody seems worried is my having to go to the toilet for frequent pees, yes they test for the usual infection but nothing more, I feel this is just not normal, it happens regardless of how much or how little I drink.
Sorry for the moaning too.
Thanks Gillian
You can do a sublingual b12, it is as effective as the shots. I JUST found and ordered a website with syringes and B12... if you want it ill post it. otherwise, the sublingual is Methylcobalamin 1000mcg. Stick it up in the cheek in the morning.
amazon.com/NOW-Methyl-B-12-...
it can take months to correct a deficiency.
although I think you posted on here before about higher than normal levels of b12... and i think I said to check you liver function yah? how is you ALT and AST? Bun/Creatinine?
Thanks you Rooser1
I think I would try the sublingual b12 first. Not sure whether there would be an issue if my B12 remains high though.
My liver function ALT, AST and GGT are all fine, no changes from the usual, no Urea changes, same for Creatinine, it's very odd, the other bloods have all been normal range , they did thyroid too.
The only thing that's been happening is the ins and outs of WBC, neutrophils and the the MCV and MCH and red platelets its it's weird and I am sure it's Azathioprine. Did you ever find anything to link Azathioprine with deficiency or is it because of gastro bleeds this happens with Azathioprine, not great with too much of this stuff its all too new 🙄 I know you have read soooo much. I have been looking at things from the high B12 level and keep putting aside serious issues because I do think the suggested false B12 and testing is the right thing to do first. I am impatient and I am trying to preempt the results for MMA coming back as inconclusive and me not being offered any further investigations, it's been driving me round the bend I feel in a totally horrible place for me, usually very upbeat and happy ☹
Thank you for your reply and the links much appreciated x
Can you provide examples of the rbc, wbc, mcg mcv shifts> do you have values?
B12 blood serums arent the best indicator of a deficiency, correct- as they can be reported as false high. Are you sure anything in your diet, other supplements?
Im sure you read on the internet about actual high b12 levels and what complications that can lead to.
There actually are a ton of articles that link Imuran to megaloblastic anemia. Here a great break down of a lot of it
incan-mexico.org/wp_hematol...
im curious what your MMA will be, usually that gets tested with a few others like homocysteine, amongst others. All mine came out fine ironically, except for Cystathionine... i was low.
I would say- you cant hurt by supplementing. I noticed a difference in about 2 weeks... i like the shots and I highly recommend a loading dose (did that too late- but game changer!)
I would also say- find yourself a hematologist. They tend to fine tooth comb blood a bit better than the others.
Hi Rooser1
No I am not taking anything or eating anything high in vitamin B12, the only supplements I take are vitamin D diagnosed with a deficiency earlier this year, cranberry and D-mannose for UTI preventionand viatmin C. I eat a well balanced diet other than very few refined carbohydrates and my diet is mainly vegetables and fruit with a normal size portion of protein, so nothing here.
Yes I have read about all those nasty things associated with high B12 which I have to say honestly do concern me and even more so when I have a rheumatologist who appears to not understand it is not normal to have raised B12 especially when previous B12 has been normal. But I wanted to go down the suggested route of having MMA checked and this is the first thing. My GP tells me if the serum B12 comes back high again he is referring me to hematology, I want the MMA blood and urine back too, these should be back early next week.
Thank you for the link I will have a good read of this. I am also going to gather the data from the NHS hospital trust areas here in Scotland to prove to my rheumatologist that if I lived in another region I would on and off Azathioprine because of neutrophils which is the reason I have been coming off it but only when it drops to 1.2 where other NHS trusts areas I would be off it at 1.7 to 1.2
I will speak to the GP about hocysteine and cystathionine.
Here are my last 10 monthly results prior to being taken off Azathioprine:
RBC (ref range 4.0 - 5.0)
4.0 x 10ˆ12/1
3.8
4.0
4.0
3.8
4.0
4.0
4.1
4.2
4.2
WBC (ref range 4.0 - 10.0)
3.6 x 10ˆ9/1
4.4
4.3
4.7
4.7
5.0
4.5
5.2
3.7
4.8
MCV mean corpuscular volume (ref range 82 - 99):
98 fl
100
97
98
100
98
97
96
93
94
MCH mean corpusc. haemoglobin (re range 27 - 32)
32
33
32
32
32
32
32
31
31
31
Neutrophils (ref range 1.5 - 1.7) :
1.2 x 10ˆ9/1
2.0
1.9
1.9
1.8
2.2
1.9
2.3
1.3
2.1
Thanks
you teeter like me. If you bloodwork- might be worth it to add on Parietal cell antibody and intrinsic factor.
wow on that 13 Neutrophil.
Yes I was high MCV high MCH, low neutrophils, low RBC- and wouldnt you know it, now everything is back to normal since starting supplementation. WOW *eye roll*
Ooops sorry Rooser should have checked what I had typed it was 1.9 I have edited that now
What do the Parietal cell antibody and intrinsic factor do?
I am going to speak to GP after these results are back about giving me a trial of B12 for 3 months but I think if the B12 comes back high he is going to not want to do this and like me he really wants to find out answers why it has risen, not sure if you can have a high out of range on one test and a normal test the next...
Thank you very much for looking at these for me, I have no got a clue other than I have everything in a spreadsheet and I do read up about things but has often happens now I have little retention, and yet my previous boss hated me leaving and said he wished he could take my brain away because it was like a filing cabinet... those days are long gone 
PCA and IF are components of your stomach that allow you to absorb B12. Autoimmune gastritis along with bariatric surgeries, certain meds etc- will lead to a decrease of these components and then you cant absorb B12 from your stomach lining like youre supposed to- leading to pernicious anemia, macrocytic, megaloblastic anemia and b12 deficiencies. those two tests confirmed that I was not absorbing b12. EVEN THOUGH MY B12 WAS QUICKLY FINE AFTER SUPPLEMENTING. serum levels are a bish. My levels were like 3x out.
SO b12 shots FOREVA.
I am still waiting results of biopsies recently carried out during my colonoscopy, other than this there was no inflammation in my large colon or ulcers, I have not had any checks with Gastroscopy no idea why.
How do you feel having to have B12 shots forever? I know I have read you have greatly improved, is this still the case?
I have read and noted the words for PCA and IF, can these tests be carried out routinely or are they specialist test, are they blood tests?
Im okay with the shots. If I tire, I can always switch to the sublinguals. Ive gotten better about injecting and was doing one every other day for a while. It more of a head game IMO.
The PCA and IF are specialty tests and would not need to be repeated. They are blood tests. Very simple.
I think you are very brave doing your own injections, I understand they are better than the sublinguals if gastric issues are a problem, over here I have not heard of the national health service providing patients with B12 to do at home but I have read about people purchasing the B12 for injections from Germany.
I will discuss the PSCA and IF test with GP but I doubt he will have the authority to carry them out , however he was surprised hims6he was allowed to do the MMA urine.
We seem to be such complicated people, I have asked myself recently many times do I have Behcet's especially with the B12 coming back high and thinking it could actually be false and really be a deficiency, would this be easier, it certainly feels that right now.
I will let you know how I get on with the MMA.
Thank you again for your invaluable help and insight 😊
I also felt like my behcets was a ruse too since learning about the b12. But then I still have the characteristic BD symptoms when i flare. Cant fake a pathergy test, Erythema nodosums, the wrist and ankle arthritis, and above all the meningitis. Oh and cant forget the ulcers HAHA. Now I know you can get oral ulcers from b12 deficiency, but since being on the shots for months and extremely stressed out- guess whose got a classic under the tongue joint? Going on three weeks now.
The b12 deficiency symptoms were REALLY different from my normal flare. Thats why it was so confusing. Best way to describe it was like i was watching two movies at the same time. I knew the one movie, but whats this other one?!!? My crp and sed rate were extremely high, but I wasnt fatigued yet. Electrical sensations were a painful and very apparent thing. I think my nervous system loves to go into overdrive.
anyways- there is mismatched info about the oral/sublingual vs shots. Oral is no no for gastric absorption. Sublingual is as effective, taken 2000mcg a day. Shot obviously effective.
I give myself weekly B12 injections. I'm very vitamin B12 deficient among others. If I'm lucky enough to feel a flare coming on, I take a smaller dose (dr approved). I dont wake up feeling that bad the next day, most of the time anyway.
Hi STM252, thanks for posting, same for my son, I wonder, but he takes Vitamin B12, and for the fatigue he says what helps him a Turmeric w/few drops of olive oil, or coconut oil, and pinch of black pepper, I think the Turmeric moves the blood circulation, and that helps him with fatigue, he says, he notices that when he has fatiuge, the Turmeric gives him burst of energy...but noting should be over taken, and without doctor advice...just sharing what has helped us....it is the blood vessels the key rooth cause of all troubles of behcets...so activity in repairing blood vessles will help all symtoms...now as I write here below in other post, Natto Fermented Beans highest Vit. K2 source Key essential for blood vessels health - you can learn to make Natto Beans fermented from may videos, for diet ....good luck
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