Hello, I am posting regarding my Mum who is 51, has hashimotos (now on 150mcg a day) and was diagnosed as b12 deficient in June 2016. Mums moSt concerning symptom, as well as the usual b12 symptoms, is weak legs. She started the usual loading dose and with some persuasion and a specialist physician appointment we managed to get the injections every over day.
Over the course of around 6 weeks her legs deteriorated to the point she's now in a wheelchair. She was admitted to hospital two weeks ago and has had many assessments with no conclusive answers. She has now been discharged and living back at home. Her legs now have no power. She has little sensory symptoms in her legs - some strange sensation in her toes. When she was admitted to hospital she was given 5mg of folic acid a day. She is no longer getting injections every other day.
The Dr's are not considering b12 deficiency as the cause of her problems as her deterioration was so sudden. I understand this, but considering they are finding very little else as a reason for her lower limb loss, I am curious if anyone else has experienced a rapid deterioration, owing to b12 deficiency? Paticularly in motor function. And/or related to thyroid issues? Her medcation has been altered alot recently. Any information will be much appreciated.
Thank you, Lauren
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Lozag89
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Its a very long shot - because I've never heard of it actually happening on that level and that suddenly but you could suggest looking into functional B12 deficiency. This article mentions a study done in denmark (bottom left on p509 - where 30% of patients being treated with B12 injections developed anti TCB II autoantibodies which shut down the mechanisms that transport B12 to cells where it is used.
Hi Lozag89 I'm saddened to read about your Mum's condition but not being a medically trained person I can only suggest you buy the book "What you need to know about Pernicious Anaemia & Vitamin B12 Deficiency" by Martyn Hooper who I think went through a similar experience in Appendix 1 on page 241. (from Amazon)
Martyn is the chair of The Pernicious Anaemia Society which can be joined for just £20 for a year's membership and you will find him and all the staff most helpful.
Hi Lozag89. Just wanted to let you know that I am also suffering from increasing weakness in both legs, accompanied by intermittent power loss that is getting worse.
I have B12 deficiency and 18 months ago I felt as if my B12 had simply stopped working. All my symptoms have increased over time and are getting steadily worse, though not at the swift speed you describe. Though the rate of decline is speeding up.
I think I might have a functional deficiency but trying to find someone who is knowledgable in this is proving practically impossible.
So far, I've seen two gastrologists and one neurologist and their,learned opinions are that my Serum B12 level is very high (above 2000) so B12 can't be the problem. They don't seem to be aware of functional B12 deficiency. Anybody who reads the information and posts on this site will know what a nonsense statement that is!
I'm really sorry that your mum is having this problem and I'm sorry that I can't offer any possible solutions or ways to deal with the problem.
It might be worth printing out the paper that Gambit62 has given the link for and taking it to her GP to read. You may have to insist! That's certainly what I'm going to do.
Can't comment on the thyroid issue (don't know much about thyroids) but it might be worth putting the same post on the thyroid forum on health unlocked (you can find it by searching 'my communities').
Simply sending your mum home with no answers is not good enough and I feel very cross on your behalf. Unfortunately, it's something we hear quite often here.
I really hope that your mum finds some answers soon and if I come across anything, or find a doctor who actually understands functional deficiency, I'll put up a post and share the information. Many,people here would benefit, I think.
I'm so sorry your mum is now in a wheelchair Lozag89.
I am wondering whether:
* her other symptoms are neurological ?
* her doctors tried to find the cause of her deficiency?
* B12 injections were given early enough and every other day until no further improvement and before her neurological problems became worse?
My vegetarian relative, also with Hashimoto's (four in the family with autoimmune disease) and various allergies, was misdiagnosed for years with ME/CFS and in a wheelchair at various times. Her severe B12 deficiency came to light after a dental appointment made all symptoms suddenly worse (Nitrous Oxide inactivates B12 if levels are already low). We then had a battle to get urgent and more frequent injections and, although her family eventually resorted to injecting their own B12 from Germany, I'm afraid the delay took its toll, even though she has eventually regained her ability to walk.
You may find the information in this Dutch B12 survey helpful in deciding what to do next. Personally, I would try to get the B12 injections reinstated without delay (as well as supplement with Jarrows Methylcobalamin 5000 mcg sublingual tablets) and contact the PA Society for help, if necessary.
Mums other symptoms were brain fog, tingling in hands and face, very tired, achy legs, hair loss. I wouldn't say she recurged required amount of injections early enough. She received injections every other day for about 4 weeks and her legs got significantly worse over this period. We are still waiting for test results re intrinsic factor.
I'm sorry to hear about your relative. Mum is continuing to take the b12 boost spray and oral supplements... at the moment no further injections are scheduled.
We have an app on Oct 14th so can discuss things further then.
There is a condition called sub acute degeneration of the spine, which does affect some people with low B12. Martyn Hooper the founder of the Pernicious Anaemia Society had this himself. It was causing problems for him walking, and he did collapse before it was diagnosed. I think this can only be detected by a scan. Have they scanned your Mum's spine? If not please ask for it to be done.
I think so, but I'm not sure. I think Martyn Hooper writes about his own experience of getting a diagnosis in his book. I'll see if I can find the appropriate bit in the book. It may have involved having a dye injected? MariLiz
"What you need to know about Pernicious Anaemia & Vitamin B12 Deficiency" by Martyn Hooper who I think went through a similar experience in Appendix 1 on page 241.
I went through my copy of his book and couldn't find exactly how they arrived at his diagnosis. They did do an MRI scan, and apparently thought he had cancer in his spine at one point. So it must have shown up on the scan.
Hi lozag, I'm not experienced to advise you in any way but have a similar quick progression like your mum. I was diagnosed with vit b12 deficiency in June. My legs rapidly became really weak to the extent that I really struggle to walk now, gone from being really fit to this in 3 months. I did have some sort of reaction to the b12 injections and apart from anything else my legs seemed to get worse with the injections (I'm not suggesting that is the case with your mum, just my experience) I am waiting for an Mri scan and my GP is arranging for me to have an active b12 blood test done as this is apparently a far more accurate test in my situation as my b12 levels went up with the injections and are now dropping dramatically but are just above my original level of 85. I have definite neuropathy in my legs and loads of other classic symptoms of b12 deficiency. I am waiting for a referral to a haematologist in London. I am completely convinced that my problem is from my deficiency as is my GP and other medical members of my family. The big problem I think is that a lot of the medical profession have no idea about these things. I wish your mum well and so hope that things will improve for her. I do not know whether my post will help you but felt obliged to reply just in case it does.
So sorry to hear you are having a similar experience. Your fortunate though that you have the health professionals behind you, so keep hold of that GP!
Do you do anything to try and preserve some strength in your legs? My mum is doing hydrotherapy.
The Dr's told us that it does not seem to be b12 because there is little sensory involvement, mostly motor. However I have read that this can affect your motor nerves. .
Please do let me know if you come across any useful information regarding motor nerves and b12.
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