There wondering if anyone wakes up in the morning just wishing they could just go back to sleep again, not just laziness but waking up shattered as if you just haven't bothered sleeping ?
I have B12 deficiency which is treated by weekly injections of hydroxocobalamin, peripheral neuropathy which they currently think is CMT.
I have had my thyroid tests done and the doctor said they were within normal ranges but I do not have the actual results. Also have kind of foggy head most of the time and take forever to get going in the mornings.
Obviously I have some issues going on and I trying to work through them ,but, what I was wondering does anyone have any tips or advice for OTC supplements that might help ?
Thanks
Dave
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DaveCr
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What is CMT? B12 deficiency causes peripheral neuropathy so that is a possibility. Yes. I used to have real difficulty waking in the morning, slept through alarm etc. Thought it was just aging at 40! After started B12 injections that settled though. One of the first things I noticed was feeling more awake and alive. How long have you been on weekly treatment? Usual loading doses are alternate day for min 3 weeks if neuro symptoms.
Second chance thanks for coming back. Been on weekly injections for about two years now self injecting and self financed as doc will not supply that regularity.
Generally I sleep well, not aware of any waking, but just feel exhausted when I hail my body out of the bed.
I am 51 and people keep saying it's just age but cannot believe all fifty year olds feel like this.
Have you tried the active versions of B12 the methyl and adeno versions ?
Hi yes I take methyl B12 sublinguals about 5mg per day between injections. I also take methylfolate and B complex at injection time to get best use of B12.
The ones I have tried are Jarrow and Solgar. No difference really noticed. I have seen others recommend natural sources and Thorne research. I also have tried B12 spray sublingual by Better You.
No not folate checked have trouble get the doc to test as all seems to get pinned on the nerve problems. Once you have one thing it's convenient for them to peg everything on that !
Thanks for the advice will give those a spin and see if they help.
A friend's niece recently died in her 40s of CMT - when he described the symptoms it really did sound as if there is a huge overlap with B12 so possible that there is a misdiagnosis going on - or even that there is more than one thing going on.
Just had a look at the muscular dystrophy site - guess that it must run in your family - but don't know if you know what genes are causing it. If it is type 1 then it may be possible that methyl cobalamin and methylated forms of folate might be beneficial - couldn't see any reference to studies having been done on this but they are involved in maintaining the sheathing around the nerve that causes problems in type 1 ... and in studies of other conditions involving a similar pathology (eg MS) significant numbers of people found methylated forms of B12 beneficial and helped improve the condition.
It may be that you would find using another format of B12 beneficial - such as methyl - injections aren't the only possibility. Other routes for getting B12 in with a malabsorption problem include sublingual tablets, sublingual sprays, nasal sprays (which is what I use), and skin patches - basically finding another membrane and using that for the absorption.
I get my nasal sprays from a company called detoxpeople - they do a range of nasal sprays etc in different formats - including adenosyl - some are called nasal drops rather than sprays ... and the medium for the drops is oil which can irritate my skin sometimes but is a lot better than feeling like the living dead which is how I felt before.
Gambit thanks so sorry to hear about your niece it's a sobering though for me though. They have been treating me for cidp and now seem to erring towards CMT. Meanwhile I just walk like you said like a zombie. I personally don't care what label they hang on it my aim is just to have a life.
Gotta laugh they took bloods for a genetic test this time last year and still no results lol.
Thanks for the pointers will look at the nasal sprays.
Having your thyroid results within the normal range is not good enough I am afraid. Keeping people within the ranges - is keeping thousands ill. Where you are in the range is more important than being in range. You are entitled to have copies of ALL your blood tests - which is vital if you seek wellness It is a legal right. I live in Crete - so we keep ALL our own medical records and can go to any Doc/Specialist as a result - great system.
The normal level for the TSH is 1.9 in healthy people and yet the range is 0.5-5.0 - although some labs do vary. Your FT4 needs to be in the upper quarter of the range and also the FT3. Did you have the anti-bodies tested - if not then they must be done especially is you have PA. Auto-immune issues hunt in packs
It's like being diagnosed for B12 deficiency - the range is far too big - and if you are around 200 many Docs say you are fine - which is far from OPTIMAL. I would seek out those thyroid results and post them here in a new post - or on the Thyroid Forum of HU. I am happy to help.
When people suffer deficiencies the adrenals also suffer - which can cause fatigue in the mornings. How do you sleep otherwise during the night ?
I am not saying it IS a thyroid issue. I just think it needs to be ruled out. From being on the Thyroid forum for almost 4 years I do know that Docs have little or no inclination to understand how to interpret the blood test results and help to find wellness for their patients. They are completely prevented by the Guidelines which is they stray from them could mean they lost their licence to practice
You do need a full thyroid profile checked and not just the TSH. Could you afford to go private and have the tests done at home ? Blue Horizon and Genova Diagnostics are well used by many.
You may have time to click onto my name and read my edited health story ! We need to take control and the first step is obtaining your results - with ranges - from your surgery.
Have you had other tests like Ferritin - Folate - iron - VitD - these are not included in the routine FBC - Full Blood count. However they do tell you a great deal about tiredness and many other health issues.
I find getting out of bed is the hardest. But laying there is sometimes even worse and I feel like the sleep does not improve my condition. Even after hours of laying there, I just feel worse.
Getting up and moving allows the muscles to release some B12 from the injection sites. I find with exercise and physical work I get more energy through out the day.
Also ask your GP for a Testosterone level test. You may be low.
Also see if you are getting the right supplements. Folic Acid, Vit D., Vit B6
I hate to say this, Dave, but there is no supplement that will work if you don't get the actual things that are wrong under control. It will just cost you a small fortune and leave you rattling around with dozens of vitamins inside you to no effect.
Also, I really wouldn't trust docs on deciding what is normal for your thyroid results. Your symptoms are a very good fit for hypothyroidism, so you really need to get a copy of those tests for yourself and post them on the thyroid forum for the actual experts to assess! Thyroid is a chronically undertreated problem in the UK, and the NHS treatment protocols are very poor. You really need to clap your own eyes on these test results - for the good of your health. Best of luck!
P.S. You could quite easily have subclinical hypothyroidism, which most docs will define as 'normal', but can actually be very symptomatic. Combined with your B12 problems, it could quite easily be enough to tilt you into the desperate situation in which you find yourself. Get those test results and be sure!
I know exactly how you feel, I think it takes about 2 hours for me and in that time have at least 2 very large strong coffees without those I think I easily I could crawl back to bed. I have arthritis, both knees need replacing, diabetes and a long list of ailments. The diabetes is well under control, only have one tablet a day but I think there is so much confusion with the PA that when I say my legs or feet hurt and the tiredness it is difficult to find a GP who has any idea of the relation to PA, so sure we get misdiagnosed. I have had Plantar faciitis, but now it is not my heels, it is my toes and my calves that feel "odd" and the pain in my toes and just under that part of the foot is awfull some day. I too have had Gastrtis which flares up. We have a shared problem with similar themes between myself and my younger sister. She has Hashimotos Thyroiditis and takes B12 tablets although not diagnosed with PA. She lives in California and they are alot more up on all these autoimmune things. We both have Macular Degeneration, hers is Starguard form and well ahead of mine. I have heard that PA affects the legs and eyes too, my balance is awfull and I am really good at tripping over myself now! Suddenly I am meeting or hearing about so many more people with this yet still your average GP really knows barely a thing. There must be consultants now surely? Do you get the mouth ulcers, I still do by 5 weeks after my injection which is when I start to sleep, feel just sooo ill. We need PA to get recognised by the NHS for what it is, for those who are working this is vital so employers know it is not taking time off for fun when you wake up early evening instead of morning when you should go to work. Can you just feel it down the phone when you have to apologise for missing something as you were in a coma type sleep? I hate that feeling whoever at the other end is thinking "oh yeh?!" pull the other one.
I have only just become a member, although known about the Society for years. I wondered if there are any "get togethers" or meetings, it would be such a relief to get to know some of the others. I live on the Isle of Wight so it is rather awkward to get off the Island and get to many things if they are not somewhere like London. We don't have boats or catamarans late to get back over unless it is the milk boat or dangerous cargo which are in the middle of the night. I wanted to see if I could do anything over here but the Nurses cannot give details of contacts, although I wondered if they might let me put a notice up.
Have a really good article I cut out of "You Magazine" some years ago, I presented a copy to the Doctors in the former surgery and now to the Nurses and Doctor in the one I am in now. That explains a lot of things by a Professor in Edinburgh which seems to make them take notice, he has studied it for 30 plus years. If there were consultants or similar like him on the mainland i would travel anywhere to see what I could be doing, eating, anything. In the article I read it said how in China they give much higher doses, in fact most countries do. My late Mother's friend lives here and in Australia, splitting time between both, and their next door neighbour has fortnightly injections and stronger the dose. When others in these postings talk about block injections, what does that mean? The Government guideline is 12 weeks and it seems that the word guideline to most GP's means LAW, do not even think about less. Is the cost again something we are going to have to fight with all the cuts I wonder, as Cancer patients do if they live in an area that the Council say too pricey. I understand people can buy over the counter in Spain and stock up annually on hols or if friends live there. Where do you get these methyl and adeno when they are at home and how do you get? I do not know if I can afford al these things that mean so much to basic living but sure as heck the GP would have a fit with his leg in the air at the whisper of could I have on prescription? I am 60 now, think I was diagnosed about 10 years ago, 8 to 9 years of injections and that was a fight. Had huge ulcers for 8 months, all I could manage was jelly, yoghurt, ice cream etc. My GP gv me every throat and mouth gel, mouth wash, pastille out, he had no idea. It was when I went to the new one who had joined the practice for a second opinion, took a quick look at the ulcers, listened briefly to my tale, picked up the phone.. went to Maxiofaciall at the hospital, open mouth, quick chat, blood test, next week diagnosis. My GP phoned me at home at 7.30 pm, unheard of unless he was ringing to say you are dead actually, told me to get to surgery first thing to start injections that would be on for rest of my life, the Nurse can tell you about it. He still obviously had no clue.
Be gratefull if yourself and anyone dong these posts can point me in the direction of these other meds, vitamins or whatever you are trying. I wonder if I would be right in saying others get desperate like me, it is so horrid to have no brain for hours and a body that just does not work, like a rag doll. I have days when I just honestly cannot lift my legs out of the beds, mind just so muggy I cannot function, it takes so very ling just to get up in the first place. That must and does seem to sound extremely silly and pathetic.
Thanks to you and anyone with any advice, like most of us I will try anything, anything to feel "real me" again, I forget what it is like.
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It is a legal right. I live in Crete - so we keep ALL our own medical records and can go to any Doc/Specialist as a result - great system.
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