Hi everybody and TY in advance for any input. So I think I may be low in B12 and with hindsight have been for along time. I dont think its as bad as alot of people on here but I do feel constantly tired, have fuzzy brain, low concentration levels etc and though I dont suffer with vitiligo it is in the family. When I was pregnant my bloods were of concern but because i didnt feel unwell it was really dealt with.
My question is can I treat myself and see if it makes any difference or is it essential I go through the Drs...I have purchased siblingual drops at 3000mg which I know wonder is maybe too high a dose...I havent started them yet. Would this high dose be ok to use in the loading up stage...and then maybe reduce to once a week or whatever suits me. Obviously if this dosent make any difference to my symptoms i will make an appointment with my Drs...just not sure Im up for a big battle with them atm! so seeing if the self medication route will be less stressful?
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Worksop1
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Let me assure you that self-treatment should be your very last resort. This is because, if you do have PA, you will need further investigations and to have it on your medical record.
But if you self manage you may end up in difficult situations with your health that you can never get NHS help with.
Once you take sublingual drops, your blood levels will rise and then we it comes to the test you will be in the normal range. And you will be denied any treatment or help.
Self treatment should happen only if youve been denied treatment you need by the GP. Unless you're in the danger zone with symptoms, its best you make an appointment asap.
The test the nhs does is useless anyway, they dont test for active B12...what confuses me is if my ranges are showing as normal (due to me taking b12) why would I need further investigation?
You're right that the test is not totally accurate. But it is in the sense that its measuring B12 in your blood.
If you swallow sublingual, you're raising blood levels but not necessarily correctly treating a deficiency. Injections are the best remedy and if you self treat you wont get them.
In my experience, it is 100 times more stressful to try and do it yourself. If you get it wrong, you're on your own.
GPs won't get it wrong if your blood hasn't been affected by extra B12 that you've started taking. They can also run the tests to check for PA. Unless you're certain its not PA, but not many people can be.
I sort of understand what your saying but I dont quite get the if you get it wrong your on your own thinking...what would be the consequences of taking b12 which is freely available, surely if im not low in b12 it wont work and I can get into a battle with my Dr and if it does work and I feel better I can just continue?...I dont believe I have severe symptoms btw and can function to a level most people would consider normal. I have a small holding, my own business and am doing up a large farmhouse so certainly not bed ridden...oh and Ive been a veggie for 30 years.
You are not a Doctor. And you do not know what your blood levels are.
What if you have low folate, ferritin or anemia? Simply taking 3,000 sublingual each day, which you claim is too much (which Id argue it isn't enough) will raise your levels but may not be effectively treating your deficiency. If you have low folate too, you will need to start that aswell and will be guessing. Guess work will lead to poorer health.
At least get the test at your baseline first. Then you'll get a Doctor to prescribe the correct treatment. And you can augment that treatment with sublinguals.
If you do it alone and miss a day of sublingual (which should be more like 15,000 per day) your levels will drop and you will experience a worsening of symptoms.
You're asking us here and we're giving you our personal experience. If you don't get injections you will get worse, there is no doubt about it. Injections are not exclusive to PA, they're prescribed to everyone with B12 deficiency. And for good reason - injections let you absorb 100% of b12.
Sublinguals are about 15%. So, you will spend alot of money on a good sublingual for at least 6-7 months before you feel better.
In the end it is up to you but I cannot see any reason why you would try to self treat alone and risk making your life worse.
If its a pride thing, please swallow it. There's nothing more important than your health. And frankly, I believe you are greatly underestimating the dangers
I personally see no problem with going at it alone, since that's what I had to do. But I would read up on b12 deficiency / pernicious anemia for a few days before you start the b12 drops. The main problem is that oral b12 can raise blood levels (without fixing symptoms) and make it difficult to later obtain the evidence that you may have pernicious anemia or other non-dietary cause of b12 deficiency. It can take 4 months or longer after stopping tablets for levels to fall. Sometimes much longer.
Why is that important? It might not be to you, or not at this time, but in the future you might have a more open minded doctor, or end up in the hospital or other situation where it woukd be useful to have documented PA/B12D. You may later also wish you had a benchmark to compare against.
This a long way of saying, even if you'll go it alone, it's worth getting private testing before you start any b12 oral or otherwise. Tests to get invlude: Active B12, MMA, Homocysteine, Folate, Intrinsic factor antibodies, Gastric parietal cell antibodies, and a Full blood count, platelets. If you post your country, we can help guide you to private labs.
Also note that if you can't absorb b12 from food, oral b12 may not help either. That's why nearly everyone here is on injections. Or they might work for a while, but eventually stop being effective (as happened with my 2 relatives - both are now on injections too). You can always try the drops, but I strongly recommend getting tested first.
And if you have confirmed PA, injections are really the only treatment. Oral b12 whether sublingual liquid or tablets, will do very little.
And keep a symptoms log to see if you feel any difference.
Ok i see you're vegetarian. That could point to a dietary cause. But do you eat eggs and dairy? They also contain some B12. Food that's been fortified with B12?
I would personally still get all the tests, especially if you suspect PA, but otherwise there's no harm in taking b12 on your own. A good B complex with less than 10 mg B6 (higher doses can be toxis) is useful to take, to keep all the Bs in balance. B12 also needs good folate levels to work. Preferrably, get folate tested first, as that can be low in people with B12D. If it's very low, you may need more than what's in a B complex.
I dont eat meat or fish but do have milk and cheese...not eggs though. Ive ordered a full blood test and an active b12 test + iron...see what they say and then if it shows anything as being low Im going to have more ammo when I go to the dr's.
Ive asked for a b12 test at my Dr's along with a few others and been refused so Ive ordered a active b12 test and a full blood count test privately...i dont think my symptoms are bad enough for them to take them seriously tbh.
Self-treatment is unwise if there's any alternative.
Vegetarians do run lower B12 levels as they don't have the same dietary intake as the rest of the Omnivore population.
Please allow me to feel deeply insulted in your view of the NHS test being 'useless'. If it was 'useless' it wouldn't be performed. The NHS has plenty of other things it can spend the considerable expense of B12 assays on. [I won't wander off into the relative advantages of 'Active' versus 'Total' at the moment.]
If you commence self-medication and then need medical assistance you will have made it rather more complex to unpick what's going on, than if you simply go and discuss your symptoms with a GP. That's your route if you need specialist help.
The experts who run this charity have done plenty of statements and even videos clearly stating it is a very flawed test and leads to many many false results which lead to false diagnosis of things like depression...alluding the problem is in your head etc, why would I want that on my record? I have ordered a more effective active test so will see what that says.
The Active B12 test effectively measures that proportion of B12 that is bound to one transport protein, of which we have two. The other one [Haptocorrin] bind the majority of the B12 in the blood; we don't know what, if anything, Haptocorrin does [well, I don't know anyway] but it's around 75% of the total. As a consequence, 'Active' B12 is around 25% of the total. I do not doubt that, all things being equal, the 'Active B12' test might be preferable, but the 'Total B12', which the NHS relies on, seems to perform a reasonably useful role. Otherwise, we'd see 'Active B12' being offered more widely.
Do you have PA in the family or other autoimmunes such as thyroid, along with the vitiligo? If so, I'd agree with jade-s that getting MMA and homocysteine, IF ab etc tested before you start supplementing could make life a whole lot easier in the long run. You can have a cellular deficiency at any level of serum B12, but doctors are most unlikely to look properly if your serum is deemed satisfactory. Active test is helpful but still not conclusive - no test is. My dad has been in this situation for 40 years, self treating, and I for more than 20. Only now starting to get some help, now that I'm a lot worse than I'd like even though I've been supplementing. You can self test, don't have to go via GP if you really don't wish to. If you should actually have PA, the sooner you and GP know about it the better. Best wishes
Hi, no other issues other than the vitiligo, we are all generally a very healthy bunch and we live very active lives so certainly any symptoms are not severe...my query really was based on how difficult it seems to be to get any help until your severly ill...something i wouldnt want to go through because I didnt do anything for myself. I have privately ordered a full blood count, iron, b12 along with a few others so if anything shows up i'll book an appointment. I have also had covid in the last few months which totally wiped me out so thinking I may still be suffering with that abit...aswell as being a veggie for 30 + years I do suspect im low in iron/b12 and probably other nutrients.
It will be interesting to see what your results come back as. But just be aware that you can be deficient and serum, either full or active, look fine. And covid just confuses that picture more as it seems to affect one-carbon metabolism but may well not show in your B12 result. The full blood count may give you some pointers. Might be worth getting checked for coeliac as well as thyroid, for those with vitiligo, as it is a commonly co-occurring autoimmune. I know what you mean though. Three older generations all dropped off a cliff with late PA diagnoses and so the rest of us supplemented early because we had symptoms but couldn't get a diagnosis. But over a lifetime, oral/sublingual doesn't seem enough, and it does make it very hard to get a diagnosis later even with worsening symptoms.
Thryoid function tests already done and they were all fine...coeliac was mentioned but on further investigation I had none of the symptoms...funny though because my son is under the dr for vague symptoms of extreme fatigue, weight loss etc...he has low iron which is being dealt with but is due to go back next week for further tests and a coeliac check, his glands are all up aswell? Not sure about his b12 yet but all other bloods so far have come back normal.
Hopefully you have a full set of TSH, FT4 and preferably FT3 (and 2 lots of antibodies ideally). Still worth keeping a copy of results - these things can change. Coeliac and other gluten related disorders have extremely diverse symptoms, so I wouldn't rule that out just yet either. Coeliac testing misses lots of people, even if you can get tested. If iron proves hard to raise with supplementation, suspect gluten (and/or thyroid!). Bloods are a useful guide, but no more. Need a doctor who will take a history, look at symptoms and family. Best wishes
Ty, seems its always a battle to get dr's to treat the symptoms rather than the test results which as you say can so often be confused. I was told if I can eat weetabix without being ill i didnt have coeliac but since then ive spoke to plenty of people who have it and say different!
What a ridiculous thing to have said. And that takes no account of other GRDs with delayed symptoms and neurological/skin/other/ reactions. If you are eating wheat all the time you are far less likely to notice its effects on you. Hence elimination and reintroduction diets.
I agree with the other reply's to get Dr tested before you self medicate. I was PA diagnosed in 1997(before computer records) I did not keep the paper records or take the shots I needed(no insurance). I took oral B12 and thought I was managing fine.
Fast forward to today-I have too many symptoms to list because I took sublingual tablets instead of the shots. Now I have had to convince my Dr that I really do need the shots because my B12 test was 1600 from the oral B12 but no symptom relief. I have created a mess. Thankfully he knows my original Dr that diagnosed me so he went ahead and prescribed 3 shots(1ml monthly) to see what happens with symptoms. I do feel much better after 1 shot but still not well nerve wise. Its now a very long road back because I took the wrong shortcut.
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment (over 40 pages).
I suggest you track down the local B12 deficiency guidelines for your area of UK and compare them with BNF, NICE CKS and BSH links.
CCGs (Clinical Commissioning Groups) in England were replaced by ICBs (Integrated care Boards) on July 1st 2022. If you can't find ICB B12 deficiency guidelines, look for previous CCGs guidelines.
Guidelines below suggest anyone with unexplained B12, folate or iron deficiency should be tested for coeliac.
If you were tested in past and had a negative result, check your GP followed recommended diagnostic process, some don't.....
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
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