The exhaustion is going to kill me

RECAP: Dr. would not give me more than one shot per week for 4 weeks then put me on once per month because my b12 was only 240. He refused to give the loading dose for neurological symptoms as it couldn't be proven it wasn't from my type 1 diabetes I've had for 35 years (in perfect control) It was the folate he was more concerned about I think it was less than 1 or somewhere around that.

As I limped in to his office last Monday looking right out of a scene of the Walking Dead and not quite remembering which 4 medicines I was taking, I convinced him i needed the shots every 2 weeks and not every 4. I barely made it the 7 days for that injection.

It has been 10 days nwt and I am not sure I will make it another 4.

I am exhausted to the point where I never really wake up in the morning. I am confused and my eyes are heavy and they hurt. Today I almost feel asleep 4 times while driving it scared me to death. Then realized I also ran a stop sign, thank goodness there was no traffic. I could have been in a serious accident, hurt myself or worse, hurt someone else.

At 6:00 last night I fell asleep at my laptop without even eating dinner. I woke up at 11:00 and went to bed and slept until 6:00 am. I usually only sleep for 6 hours per night NOT 12!

Does anyone else experience exhaustion to this extreme? It's scary. I'm scared

27 Replies

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  • I think that you might have to resort to self injecting, if your doctor remains adamant. Have you considered this ? I myself became very desperate when my doctor refused to let me have extra injections , and self injection was the only solution . It has changed my life . Yes you must make sure that you have enough folate /folic acid . Are you in USA? If so I'm not sure how you can go about getting B12 ampoules. From UK I can obtain them from Amazon de(Amazon Germany) where German online chemists show their products . You can get needles and syringes there too . You need to get the site in English . You could ask your doctor again . He may relent . Think it over carefully . You can get instructional videos etc on the Internet . Best wishes

  • Yes I am in the USA. I remember getting B12 years ago when I thought it would help me lose weight ha ha. Not sure I would trust it now not knowing if i were even getting the real stuff. I will have to research it!

  • I'm in the U.S.; my doctor prescribes it and I get it at my local pharmacy. Apparently a prescription is required for injectable B12, but I've also seen it available on Amazon. Syringes don't require a prescription, but they are behind the pharmacy desk so I just need to go up and purchase them.

  • Hi mislauren,

    I am sorry to hear what you are going through!

    I get a prescription from my naturopathic Dr., and I am extremely fortunate in that she lets me decide how much b12 I inject. My regular gp would not give me more than one a month. My level was 290.

    If you are in the U.S. you could try a naturopath. Call around to see how they treat patients who need B12. I made sure I got a clinic where they assured me it was standard to give shots once a week. Turns out I actually need to self inject every other day. And take sublinguals in between!

    This week I decided to go two days between injections and on the second day completely ran out of energy and fell asleep for 3 hours in the evening. And then slept 9 hours. Injected the next day but still was fatigued and fell asleep in the afternoon. It will probably take me an injection every other day for a few times before my levels are up again.

    If I only got an injection every two weeks, I very likely would be as exhausted as you are!

    If you are in the U.K., then you can order from Germany. If not, a naturopath is probably your best option.

    Best wishes to you! Keep us posted as to how you are doing. :-)

  • Oh my thank you for that advice ! I will look around!

  • You are welcome! I'm glad it helped. As I've said, going to a naturopath was a simple alternative to getting the b12 I needed. I still haven't mentioned it to my GP and I should since the HMO I belong to is my "main" doctor and the insurance covers hospital,

    emergencies etc. And the naturopath route was not inexpensive but totally worth it! Doing the injections at home brings down the cost a lot.

    Hopefully if you follow foggyme's excellent advice about trial injections to disprove diabetic neuropathy and show your doc the printouts she suggested about B12 deficiency, neuro symptoms and how you should be treated, he will give you more frequent injections!

    If all that fails then a naturopath is a good option.

    Best of luck with all of it and please let us know the outcome! :-)

  • So sorry to hear that you don't get the treatment you need!

    But why don't you take b12 lozenges? Buy 1000 mcg methylcobalamin, let them melt under your tongue. Take a good vitamin B supplement as well, make sure you get FOLATE supplement as well (NOT folic acid, as it may not work). Some say you can take up to 5000 mcg a day, but I only take 2000, that works for me (I think the body needs a little time to reajust). Don't eat too much salt, as it can make you hypokalemic when all the processes start up again (you can eat bananas and avocados to avoid it).

    Buy the supplements today rather than tomorrow! Good luck! All my best wishes!

    PS: Are you on OK levels with vit d and iron/ferritin?

  • I am taking 3 gr of folate. I have a vit d deficiency as well and taking extra d.

    Where do I get the lozenges? I have never heard of them I am in the US.

    Thank You so much.

  • Look for them at Amazon - just looked myself, there are plenty! You can get sprays as well ☺

  • Hi Mislauren. I'm really sorry that you are suffering so badly with exhaustion. Many here will identify with what you are saying (me included)!

    Your GP is right to be concerned about your low folate levels - I hope he is doing something to rectify this? Your body needs good levels of folate in order for the cells to absorb and use B12 properly, since the two work together.

    However, his refusal to offer you more B12 on the assumption that your neurological symptoms are due to your (well controlled) diabetics is, at best, foolhardy and, at worst, negligent! I'm just wondering how he would expect 'proven' evidence that it due to diabetic neuropathy, unless, that is, he gives your more B12 to see if your symptoms are relieved. In which case it would, of course, be down to the B12 deficiency!

    You do not say what your B12 level is at the moment but this is perhaps a bit of a mute point since the level of B12 in your blood says nothing about what is happening to the B12 at a cell level.

    The golden rule with B12 deficiency is to treat the symptoms, not the serum B12 levels. Leaving aside your GP's ridiculous stance about a possible diabetic neuropathy, you do have other symptoms of deficiency and so you should be treated accordingly. If he thinks that the symptoms are from other causes, he should investigate!

    It sounds like you know what the B12 regime is for neurological symptoms so I won't repeat that here (but if you want more advice, do please ask). I think you are right about needing to be on this regime. It certainly can't hurt you and may well do a lot of good!

    Have you tried printing out some of the guidelines and treatment protocols from the PAS pinned posts, highlighting the relevant sections and showing them to you GP. Some find this helps - but some don't!

    And you could always ask him to prove that your neuropathy is down to your diabetes - which of course he won't be able to - unless he gives you more B12 and it doesn't go away. The solution is so simple that I can't quite understand how he can't see it! More B12,

    I think you should continue to press him on this. You could also ask him to refer you to a neurologist since it is too easy to assume that these symptoms are due to diabetic neuropathy, or indeed, B12 deficiency! Neuropathy can have may causes and it would surely be worth wanting to rule out any other possibilities, even if only for his own peace of mind - and indeed, yours too 😀!

    As for the driving, I know how frustrating this is. I stop driving when I am at my worst, since I just don't feel safe to be on the roads!

    As others have suggested, there is also the route of self-injection, which others have had to resort to when all else has failed with their GP's. If you ultimately decide to go down that route, it's very easy and there is lots of support here to help you do that, if it's what you decide to do.

    Anyway Mislauren, I wish I could offer you more that a few words. I'd like to beat your GP over the head with his copy of the British National Formulary (BNF), and that's just for a start!

    I sincerely hope that your GP relents and prescribes additional B12 for you. It's so ridiculous because if you lived in Europe you could simply walk into a chemist and buy it!

    Please do ask if you need any more help and I sincerely hope that you start to feel better very soon x

  • Ahhh this is why I come here when I need a helping hand it seems others do not quite understand what I am talking about. But here I can be heard and understood and offered kind words and encouragement that help me move through my day more easily. Thank you.

    Yes, he is treating the low folate levels and no I do not know the current status of either levels at the current moment.

    I do know the B12 helped neurologically as the right leg got better after the first few shots and I no longer have the tingling in the arms or face. It's still the left leg and foot that are majorly affected.

    I thought about searching for the self-injection on the internet myself. Not sure where to start. Have appt with Dr. on Mon again will start all over with him.

    Thank you Foggyme

  • Good luck Mislauren. I really hope he listens to you. The fact that you started to see improvement with the B12 is surely indicative that more should be tried.

    Please do let us know how you get on and there are always people here to help.

    Post again if you want help with self-injection and people will point you in the right direction. No worries - it's really very easy.

    Take care X

  • Yes self=injection would be great and very interested but someone else just mentioned lozenges. I know probably not as effective and easier to get I assume. Oh buoy.....

  • Hi again Mislauren...yes, some people do get relief from lozenges (sublingual) but some don't. And these are usually short acting so mostly used for top ups between injections.

    B12 via injection is the recommended treatment for B12 deficiency with neurological symptoms - though topping up with lozenges is certainly worth a try. Whether they work is very much an individual thing.

    Some people also use B12 via nose sprays (Gambi62, for instance) and get good results with this (some are even able to use this instead of injections (again Gambit62, If I remember rightly).

    Good luck

  • Where do they advise you to injection yourself ? I got them in my arm, they're an intra muscular injection you can't just inject them anywhere. I certainly would not be able to safely inject myself. In the arm

  • Hi PaulaW61. I inject IM (into the muscle) in my upper outer thigh (understand there are videos on YouTube but I've never looked at them). Some people choose to inject subcutaneously (just under the skin) in the abdomen.

    It is possible to self-inject safely, just not in your arm (by the simple fact that it's difficult to reach). But I have heard of people who do, and I probably could. But I chose to inject in the thigh simply because it's easier to reach.

    Good luck 😀.

  • I am extremely exhausted. I have many neuro symptoms Ataxia being one of them. I self inject 1000 mcg every day plus every other day an added sublingual of the methylcobalamin type. Here in the states it is alway cobalamin type I am also going to be checking into the h type. I order on line at a pharmaceutical company my pharmacist suggested. Methylcobalamin is twice the price as tne C type. I take all the co factors ferritin, folate and d3 and k. And a good b complex vitamin.

    But my symptoms are worsening. I am so sick most of the time. It may be idiopathic late onset cerebullar ataxia. But b12 is still of course needed. If you could self inject you can get the amount you need. Ask your pharmacist for a reputable online place to order it.

  • Methylcobalamin may be more expensive, but it is easier to absorb! 😊

  • not easier to absorb unless you have an methylation problem and then its not really a significant drop. There are good reasons for recommending hydroxo/cyano as preference for treatment - including that there are reported cases of people who are unable to convert methyl to adenosyl - the other form that is used at the cell level. I need to do more research on it but there also appears to be a genetic variant - COMT that contra-indicates the use of methyl B12.

    b12researchgroup.wordpress....

  • "Whichever form of B12 is ingested, the body will convert it to methylcobalamin. As a side note, methylcobalamin doesn’t require conversion and goes straight to work without any unnecessary energy expenditure. This B12 form flows through the bloodstream and goes to work by protecting the brain, removing toxins, and converting homocysteine to methionine. In further reactions, methionine contributes a methyl-group to create adenosyl, and ultimately adenosylcobalamin."

    from:

    globalhealingcenter.com/nat...

  • yes, except that some people really can't convert methyl to adenosyl - genetic factors so unless you know that you don't have the relevant genes and the statement above doesn't actually fit with what I know of the biochemistry of B12. It is not the case that the body has to convert B12 to methyl in order for methyl to be converted to adenosyl.

    Most people can convert both ways but not everyone, and methyl doesn't necessarily work for people - there are loads of people on this forum who don't use it for that reason - and others that don't use it because they had bad reactions when they tried it - probably down to the COMT genetic variants though as I say I haven't researched them yet.

    Personally I would be very wary of taking facts from a commercial cite without actually checking against scientific studies. The one referenced by the article is about using MMA and homocysteine as confirmatory tests for cobalamin deficiency and does not support the assertion that methyl procedes adenosyl in the biochemistry - it mentions two specific processes - one which requires methyl and the other adenosyl. Unfortunately the second link no longer works as I think the CDC have taken the micro-site down now. Again, that site made no reference to methyl being a precursor to adenosyl, probably because it isn't

  • Hi Pinkfawn209,

    What website do you use to get your b12 ? I am in the states and was under the impression you have to have a prescription to get B12. I know one can order Cyanocobalamin from Canada but I never knew of an online resource that sells methylcobalamin. Would you share that website?

    I tried Cyanocobalamin for a year and it did nothing for me but when I switched to methylcobalamin, I felt better right away. It might be more expensive but for me it was worth it!

    I do so hope you will feel better with another form of b12!

    Best wishes :-)

  • " I have never heard of them I am in the US."

    There are two PAS (Pernicious anaemia society) local groups in the USA. If you are a member of the PAS you can access details of local groups.

    pernicious-anaemia-society....

  • I am so, so sorry you're going through this. At my worst point (prior to starting loading doses) I was sleeping 12 hours and napping three times a day. Like you, I've been too tired to even eat at points. And, like you, the few days before my injection (and a day or two after) are completely miserable. I'm so tired it feels like I have absolutely nothing left. It literally leaves me in tears.

    I say that not to complain about my condition but to let you know you're not alone and your symptoms do seem to align with a B12 deficiency (although I'm no doctor for sure!). If your doctor won't help you, I'd find another if you can -- and also take the good advice of this forum! It sounds like lots of people supplement with self injections and sublinguals. I wish you the best of luck. It may take time, but things will get better!

  • Oh how I wish I was home during the day to nap and had to energy to cry. All I can do is stare in to space and think about what? i do not know. Thank you.

  • The CDC in the US used to have a micro-site aimed at educating medics about B12 deficiency - it recommended the use of nasal spray where injecting wasn't an option.

    I would suggest you make your feelings about your doctors competence explicit. Lack of B12 will kill you - not having the amount you need so it is available at the cell level could also kill you. You can't overdose on B12 so no problems with keeping levels in range that would be associated with insulin and diabetes. The assumption he is making is potentially dangerous and not in line with his oath to do no harm.

    Really hope that you can manage to get the B12 you need - naturopath sounds like the way to go if you really can't get your doctor to budge - even by threatening him with a law suit for mal-practice.

  • I looked a little on Amazon this morning and so far have found only one source from Russia. Will look some more.

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