Anyone has had B12 level of 1500 and using a b12 spray and has had injections with that level? I think I am B12 dificent but using a B12 spray for over two years as I have ME/CFS. The neurological issues and cognitive issues are getting worse and now my vision and hearing is effected.
Doctor won’t give me injections because my level too high. I tried explaining that the B12 could not be going into the cells but he won’t listen.
My homocysteine level is high too.
I have stopped the B12 spray now the last few days for a true reading but it takes four months to get out of your system.
The doctor says I need anti depressants!!!!
Need advice.
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Jan87
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Hi there Julie nice to meet you. I was just reading your post I also have b12 deficiency I have M.and fibromyalgia as well. I have noticed my vision and neurological symptoms are getting worse mine is my left side and memory is terrible. I get terrible migraines and left side numbness to the point they thought I had a mini stroke at first as my face also drops . I’ve been under St. George’s in tooting in the past for the pains in my head / migraines they actually found I have 3 cavinomas (Enlarged vessels within) my front temporal and the centre of my brain. ( I’ve been told it’s all part of the conditions basically)
It’s very strange how a lot of us have similar symptoms but not a lot of answers and it can be a very lonely workdbut believe me your not alone. I just wanted to say I have my b12 once a month as injection and like you I do notice when I don’t have it or how it effects me I do feel for you and I just wanted to say your not alone my advice is you know your body. And keep on at those who are trying in a way to help but I think these conditions are very hard as there is not enough knows as each case can be different and the same as others if that makes sense.
Please don’t take antidepressants if you don’t need them I think we end up low due to the illness and feeling helpless and as if no one is listening or helping I know I am now on the antidepressants and I truly wish I hadn’t done if I knew then what I know now I’m not saying they haven’t helped but depression comes due to your life changes due to the illness. I’m sorry this is long but brain fog and I know what I’m trying to say lol. Message anytime I try and check I hope you get some sleep.
Sorry I haven’t been on for ages so many things going on.
Since last month yes mine is the left side that’s how the fibromyalgia started on the left side.
My memory is so much worse turn a month ago and doc refuses to do anymore tests just to seek mental health and that’s all, doc won’t give me b12 injections cos B12 so high so I stopped my B12 spray January 8th and since then my energy levels have not been so bad I don’t understand that but neurological symptoms so much worse as well as vision and hearing.
That’s terrible everything your going through.
Yes we do and no answers your right
I have never had B12 injections
I had some private tests done I don’t understand them but I can tell you on here if you might understand or not?
Yes I feel low a lot but not depressed doc thinks everything anxiety and anxious if only actually but it’s not and I don’t want to take them but feel been pushed into it.
Sorry your on them and like you said it does come from that.
So sorry your GP is going down the depression route. It's so very frustrating. I went through the same with a neurologist before Christmas and it really brought me down.
I'm intrigued by b12 jabs too. Unfortunately, at least according to the ME association purple book, the evidence for b12 injection is still largely anecdotal and survey based at present and not formal clinical trial based, therefore the nhs won't support it in the UK, you'd probably need to find a sympathetic private doctor like Myhill. It does reference this low sample size survey though
But it also flags up that Megadosing can cause patients serious harm though, so there is also risk, so please be careful.
For what it is worth, being vegan I was very surprised to find I have no b12 deficiency. I supplement with a high dose sublingual b12 and still have the symptoms you have.
Letting your spray effect fade then redoing your test sounds very sensible, if frustrating, as a next step.
Yes he is and now he says that it looks like a mental disorder and it’s not but he won’t listen I just get worse and worse and my memory do bad it’s a second memory if that I can’t drive now and my hearing is so bad, my vision also have floaters and blurry vision.
I came off the B12 spray 8th January as need four months clear to get a true reading my energy level is not to bad strange that but the neurological is so much worse.
I paid for some private tests but can’t afford anymore and have the results one of them my homocysteine has gone from 18 to 8.9 but now not in the spray will it go up I don’t know.
So you have no deficiency that’s great but you still have symptoms and using sublingual that’s so strange.
I was a vegetarian but changed to start eating meat see if it helps but I don’t know if it is or not.
At the rate I am going I don’t know if staying off the spray helping or not helping.
Only way to tell would be a very thorough symptom diary over many months also factoring in any crash inducing activities.
Were all different but I just mentioned my b12 as its not necessarily a universal thing.
My. Osteopathy still seems to perk me up and aid brain fog clearance except in the depths of my trough, so for me I can't help but think it's blood flow or cardio vascular related maybe super mild hypoxia. They've found deformed red blood cells consistently. I read.
I'm looking into a heart rate monitor device next to be able to pace better.
I'm improving slightly at long last after my Post Christmas crash. Just in the last 2 or 3 days. Think I had just over exerted multiple times causing a cumulative effect then had to wait it out. Been over a month so longest and most debilitating run yet.
That’s true I should of done that and I did a few weeks then I forgot it’s really difficult to remember so many things.
Yes I understand that but I think it could be down to B12 but again not sure as so many things seem related in some way to each other.
I haven’t tried osteopathy but can look into that depends how much it costs. I am in the uk so it’s winter here still.
I was told by the private test I had in January I have a low reticulocyte count don’t know what that is but needs testing said in four weeks.
I have a Fitbit and try to keep my level under 100.
Really good least they know what’s wrong with you.
Sorry about the crash takes so long to recover I hope it improves very soon.
Hugs
High homocysteine could be a deficiency in vitamin b12, b6 or folate. Have you been taking a b complex with high dose b12? The b vitamins need to be kept in balance. Taking one high dose b vitamin alone could knock out the balance of another.
Ps you would need a functional dr to prescribe b12 injections if you are high in the range due to your spray. Specialists told me b12 was non toxic.
I was only taking the spray nothing else but have stopped it now and feel even worse but I don’t know if it’s the spray or something else.
I can write the results of my bloods I had done recently as I had these done privately and only got them back yesterday. I can’t afford anymore private tests either so stuck.
Sorry i am rarely on here. Yes b12 is good for fatigue and brain fog etc. So is ubiquinol. I would look into keeping b vitamins inbalance when you take a higher dose of b12. What bloods did u get done? Folate and b6?
I was unsure of your actual number and the reference ranges. Is your transferritin out of range? If your homocysteine came down on b12 then you must have had a b12 deficiency. Theres various causes for b12 deficiency (poor gut health, p.a etc). If you havent fixed the root cause of your deficiency then theres a good chance you still need to take it.
If you join the pernicious anaemia group on here then they may give further advice on iron results. I suspect that they may tell you to raise your folate into the upper range. Eating a lot of green veg may do that and/or taking a supplement. Its up to yourself. They are b8r to advise. Dr sarah myhill that specialises in m.e tells patients to take an array of vitamins and minerals. If you google mitochondria and her name you will get a treatment plan. Her books and youtube videos are great for extra info. In fact one talks about how b12 is gr8 for fatigue. I hope this helps.
Ps the intrinsic factor test is quite unreliable. If gut problems are affecting your b12 absorption then its likely that you will be low in other nutrients (vitamins and minerals). You need good gut health to absorb nearly everything. I would investigate this. If you start by reading dr myhills website and books etc you will get the info u need. Good luck!!
No I think my Transferrin Saturation 26.8 is fine and within range.
Any other results that you are not sure of I can post again?
My homocysteine was 18 that’s high last December 2017 I was using B12 spray then but I came off using the spray January 8th this year as want a proper reading of my B12 which takes four months I think so won’t be till start of May and then will know if I am B12 difecent.
Because I came off the spray my homocysteine will go up then?
My doctor won’t do a homocysteine test as says my B12 normal and homocysteine only slightly raised but it’s not especially at 18. Now it’s 9.8 but could be higher now as bloods taken in January.
I can’t afford anymore private tests or get any loans either so don’t know what to do.
I have joined the PA group but heard nothing.
My folate last December 17 was 15 but just goes down and I am eating veggies but can’t take supplements any till I know true reading of my B12.
Yes I know what she recommends but can’t afford her treatment plan.
Yes I have looked on you tube as well it’s good information and I told doc but he says B12 does nothing for fatigue he won’t listen and other practices and doctors I have seen feel the same.
I think gut has a lot to do with it as have no gallbladder since 2013 and right now I am craving so much food and no weight going on.
Thats strange your doctor said b12 does nothing for fatigue. A haematologist told me it was great for fatigue. Sometimes g.ps and specialists say different things.
Yes if your homocysteine starts to climb again then you must be getting low in either b12,b6 or folate. If you struggle to raise folate then your gut health may be the issue. You can look into improving that though.
I am sorry but i didnt know what number was for what test in your list. You could maybe edit the post to make it clearer?
Ps yes dr myhills plan is expensive. I understand. I think the main things she would advise chronic disease patients to take is b vitamins, magnesium (if no kidney problems) and ubiquinol. Also a very healthy keto allergy free style diet. She said the diets more important than the supplements. Although i admit i had crippling fatigue before i did the supplements and injections. I needed them.
My doctor knows nothing about homocysteine, B12, or vitamins he only knows about what most people go to the doctors with and puts it all down to anxiety.
I haven’t got enough money to pay for another homocysteine test although they do it free on the NHS but as he knows nothing and not asking anyone else as he said he spoke to a consultant in bloods said my homocysteine of 18 was only elevated well that’s rubbish it was high then and cos I am not taking any B12 now till I have b12 blood test in May it better be at the doctors I have to see how far it’s dropped.
My gut health this last week has been so bad I did a sample at the docs on Monday so waiting for it to come back.
I have decided to stop eating cake, Chocolate, anything sugar for awhile see what happens but whatever I eat my stomach is painful, gurgling just don’t want to eat how I feel right now.
Yes my folate has gone way down but I am eating green leafy veg don’t want to eat really don’t.
Right I will edit the post sorry.
My fatigue is not as bad as it was while taking the spray it’s really strange. I will start taking B vitamins after the blood test see what it says.
Oh yes julie. Thank you. I am not a doctor so i can only tell you what ive heard from other doctors. As far as your white blood cells are concerned that looks quite good to me. A doctor told me they tend to drop with infection. I am sure theres exceptions to the rule but i think in severe chronic infection they should come down. For example, mine were 4 and i tested positive for active ebv at armin labs in germany. I also did NHS immunologlubins test and they were a bit low and my b cells. These immune markers can drop due to infections and allergies.
If you do suspect any kind of underlying infection or allergies causing illness then i would recommend getting these tests done and seeing where you sit in the range. Your lymphocyte test looks not bad. They can drop with infection but they may raise too with infection and autoimmune diseases etc . Lymphocytes and immunologlubins do fluctuate on a day to day basis so these would need to be checked a few times to get a definate result.
Your MCV is on the high side of normal. MCV can raise when your low in b12 or folate i believe? Was this test run on the same day as homocysteine? The reason i ask is because your homocysteine is a decent level as if you have enough b12, b6 and folate. Well at least you did at the time of testing.
In my opinion, it might be a good idea to raise folate a bit. Spinach is great for raising it. Your red blood cells look ok but if u eat green veg like spinach etc that should give you iron. Also if you eat meat then hopefully, that will help prevent anemia. Any concerns though, then please speak to a doctor.
Ps make sure your not low in selenium or iodine. They help with the function of the thyroid. Iodine deficiency is common according to dr myhill. I hope your drs have checked your thryoid. I would check those results too if i was you.
Yes that’s great well I got an email back from the doc who did those private tests he said
The reticulocyte count is low. Reticulocytes are immature red blood cells, and low levels are sometimes seen if there is reduced red blood cell formation (for example in iron, vitamin B12 or folate deficiency.he said that nhs doc should run those tests in a few weeks and I keep forgetting to get an appointment at the doc so will do.
The lymphocyte count (a type of white blood cell) is marginally elevated. Lymphocytes are among the body's first lines of defence against infection, and will rise in number whenever the body is fighting infection well I didn’t have any infection in January when these tests were done so that’s a bit strange I think, but this last week been having gut symptoms so took a sample to the doc on Monday waiting for results of that, would that be elevated before I got an infection if that’s what this is?
Private Doc also said it would be reasonable to run the test again in 4 weeks or so to check that the level is declining so will have to do it.
The active Vitamin B12 level is elevated I think it’s cos I was taking the B12 spray and not taking it now till May but ages away so that’s why the level elevated right?
The thing is I am not as exhausted or fatigued like I was on the spray as that was the reason I took the spray but my vision and hearing and weird neurological symptoms getting worse do you know why that could be?
Doc wrote The small rise in MCH and fall in RDW is not likely to be significant, I think it is as my MCH in most blood tests over the years is always above average but nothing is ever done about it.
Yes the homocysteine was done with the others blood tests I had the tests done for PA and to see if homocysteine has gone up or down as my doc will not do anymore tests thinks it’s all MUS and I can’t afford anymore private tests.
Yes I did at the time of the test that’s right as then I was only off the B12 spray 14 days so god knows what levels I am at now as two months been of it.
Yes I do agree about folate and I like spinach and have been eating meat, salmon, spinach.
In December 17 folate was 15 and last year it kept going down and lowest was 7. Now I think it’s 9.23 still low side.
Selenium and iodine I don’t know if low or not but will look at what to eat that has them in it.
Some days I just can’t eat as stomach gurgling a lot and feel sick it happened a lot last year and was told it’s IBS but this week it has happened again so just had soup for couple of days but now back to eating properly and having salmon today.
My weight though nothing to do with the lack of food for a couple of days I have lost weight a lot as I was over 8st I am now 7st 6 not been that for over thirty years I am 59 and 4ft 9 so it’s strange as I usually eat loads.
The doc only checks TSH nothing else and that I think was last year he doesn’t bother now I will ask for my TSH reading when I get an appointment.
My MMA was 12 and range was
0.- 2.9. Doc said I have no signs of B12 deficient but I am sure I have and not showing cos over the spray.
he said
The Methylmalonic acid (Blood) showed my level of 0.12
plasma MMA values of less than 0.29 umol/L are not considered indicative of B12 deficiency.
Would that show though a true reading due to the spray I was taking?you see I don’t know that.
No problem at all. If there is any indication of their being a problem with red blood cells then i would definately run those tests again to see where you are in the reference ranges for b12, folate etc. Dont get me wrong the b12 test isnt perfect for accuracy. They changed the guidelines to let people know that the clinical picture was the most important factor in determining deficiency. Basically, go by your symptoms...
You may have a worsening of symptoms on the spray while you power up the methylation cycle. It can give you a detox reaction. So technically you can be worse before better. However, i do need to point out that in rare circumstances people can be allergic to b12.
If your neurological symptoms are increasing this could be due to being low in b vitamins, having an underlying infection or due to a build up of toxins. I really hope that you have a good functional dr to investigate. If not dr myhills books and website should help you. It details, ways to kill infections, dosages to correct deficiencies and detox methods etc. Also look at her page on stomach acid.
Oh and yes taking the b12 spray will skew your results. I think it can take months for b12 to drop off supplements etc.
With regards to lymphocytes, they do fluctuate on a day to day basis. Therefore, i would redo that test at least 2 or 3 times. However, i passed lymphocytes and failed my immunologlubins tests (another part of the immune system). For that reason, i feel the full immune system should be checked but very rarely is in M.E patients.
I better go for now julie. Sorry i have neuropathy from untreated b12 deficiency and my hands are on fire lol. Chronic infections have kept it going. Tackling everything now so fingers crossed i improve. If you have any questions ill get back to you after a couple of days rest. Have a lovely weekend.
Ps if i was you id get another dr to run more thyroid tests.
I would like to see if levels have gone down but I can’t afford to go private again so if I beg the doctor would they do the tests on the NHS?
I was thinking of asking for a B12 blood test in April or even now to see how far levels have dropped but do you think I should wait till May and have one then if doc will give me it, it’s crazy having to beg for tests when doc should do his job and find out what’s wrong.
The thing is been off the spray for now two months neurological worse then fatigue so god knows how I be when go back on the spray if results are declining.
So by been off the spray if I manage till May I could have detox? What symptoms would that be?
Yes I heard about that with the injections can be allergic but when I went to use the spray I didn’t get anything just more energy for the time.
That’s what I mean I don’t have a good doctor all are useless and no one understands about homocysteine/ B12/ vitamins so what do I do?
I have looked at her site and yes information there but due to neurological and cognitive I don’t understand it and it’s not going on.
Yes the white cells I agree but trying to explain to doc Initself is so difficult.
Thank you for all the information and I hope you improve very soon.
I can ask about thyroid but I expect it will be just TSH.
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