Sleepy all the time

All I want to do is sleep, ache all over just like flu but it isn't, voice loss etc. This happens on a regular basis in fact been like this for over 30 years. Had b12 injection last week and have it every two months. Anyone else get these symptoms? Any advice would be appreciated.

[Gambit62 Administrator]

I would do if I didn't treat myself - mainly nasal spray.

For me my symptoms come back on the day of an injection.

[Hidden in reply to Gambit62]

Thank you Gambit for the reply. I've not tried nasal spray, can you buy it over the counter or do you buy it online? Although I've had PA for many years I had no idea of supplementary B12. i also have Hashimoto's thyroiditis and take t3 for that but my main problem is neurological which I've had loads of test but no conclusions. What a nasty illness this can be. Happy new year to you.

[Gambit62 Administrator in reply to Hidden]

I buy various sprays generally on line from a company called detox people - other members of family also use them but most need different doses from me - which isn't really a surprise given how much people vary.

Other people find sublingual lozenges help ... and skin patches are quite popular.

I presume that your thyroid levels are being monitored as the tiredness could also be related to that. The neurological problems could be a mix of B12D and thyroid as well.

[Hidden in reply to Gambit62]

Thanks again for the info. Gambit on the nasal spray. My endocrinologist is trying his best in all ways for me but my problem in that department is an allergy to thyroxine. I am well supplemented on t3. Just got to try and get doctors to actually listen to me about b12. All the best to you.

[Hidden in reply to Hidden]

Hi Mabsie , you obviously have auto immune problems , have you tried adjusting your diet and going grain ( not just gluten ) and dairy free , it is working for me ! Most people don`t know (esp. Dr`s ) that grains and dairy, particularly , affect the whole body including the brain and nervous system . Check out Leaky Gut on Chris Kresser or Peter Osbourne`s websites .

[Hidden in reply to Hidden]

Thanks Jennyjd, yup everything with me is autoimmune in origin. Strangely I've recently gone gluten free and the only cereal I have now and again is corn flakes, the gluten free ones. I'll check out those websites you suggested. Nothing ventured nothing gained.

[deniseinmilden]

Hi,

Try reading through past posted replies on here - there's loads of good information. It sounds like you might need more B12. The wonderful help I received from people here in reply to my posts will give you links to others, for a start. You can read past things by double clicking on a person's name and looking through their profile.

If B12d is your problem and you manage to get enough you can expect to be acceptably well: you don't need to suffer that much!

Hope you find the information, can get the treatment you need and start to feel better soon!

[Hidden in reply to deniseinmilden]

Thank you Denise for the info. I do search back through posts but obviously must look harder. I find it amazing how people want to help one another.

I think I'm going to have to try and discuss my ongoing problems further with my GP. We'll see what happens, I'll let you know. I'm not optimistic . I used to lead a very active life but struggle to walk as I have a very odd gait and I grind to a halt. If I get even a little bit better I'd be grateful.

Thanks to all for positive help and advice.

[MariLiz]

Have you had your thyroid function tested? Often low B12 and underactive thyroid go hand in hand, and have similar symptoms. MariLiz

[Hidden]

Thanks Mariliz, yes I have Hashimoto's and I am hypothyroid but under an endocrinologist for that. I truly believe it's PA causing me problems. When I was originally on monthly injections I was quite well but these were changed to 3 monthly and that was over 15years ago and after persuasion I'm having them bimonthly. Getting gradually worse all the time now neurological symptoms including swallowing etc. I keep pushing to try and solve what is causing all this. ........... maybe one day!

[Hidden in reply to Hidden]

Forgot to say , I was similar to yourself a year ago . I found the Truly Gluten Free website and am turning things around now . Have you had any vitamins checked , vit D and vits B1&B2 are really important for energy and needed to convert inactive hydroxycobalamin to its active forms adenosyl and methyl cobalamin which the body can use .

[fbirder in reply to Hidden]

It's B9 that is essential for conversion from hydroxocobalamin to methylcobalamin. Adenosylcobalamin is formed by addition of the adenosyl group from ATP, catalysed by the CobA enzyme.

Neither B1 or B2 are involved in either process.

[Hidden in reply to fbirder]

Thanks for that fbirder , my info came from a biochemist who is helping me with Thyroid and B12 issues . He suggests that Hypothyroidism can lead to suppressed gastric secretion and deficiency of Vit B2 ( among other things ) . Proper thyroid function is also needed to convert it to functional B2 , this means that the enzymes ( decyanase and methionine synthase reductase which both require FAD ) can`t convert hydroxy to adenosyl or methyl B12 or will do it inefficiently . Functional B2 is also required to convert Vit D to it`s active form 1.25-dihydroxyD , higher doses of vitamin D can aid re-myelination in peripheral neuropathy . He also suggests that if deficient in vit B1 you can`t properly process sugar and certain amino acids for energy . If not getting a boost from hydroxy B12 it suggests non conversion to adenosyl/ methyl B12. I have been taking a B vitamin group supplement for 6 weeks now and have noticed some improvement .

[fbirder in reply to Hidden]

Decyanase is the enzyme that removes the cyano group from cyanocobalamin, not involved in coversion of hydroxo.

Methionine synthase reductase is needed for activation of the enzyme methionine synthase.

FAD is involved in a huge amount of biochemical processes, many of which are essential for life.

[Hidden in reply to fbirder]

Have to say I'm a bit confused with all the technicality fbirder and it will take time for me to know which way I should go. Good of you to respond.

[Hidden in reply to fbirder]

Right fbirder, it's obvious from all of you I need to up my supplementation. Being new to this but not PA I need to ask more questions of my GP. It's obvious I've been fed the minimum and it's not been enough. Thank you !

[Hidden in reply to Hidden]

I am deficient in vit.d and now have to supplement. I've been prescribed folic acid daily. So complicated all this when all the doctors told me many years ago I had PA. My gt. Grandma, father and one of my brothers has it too. At no time were any of us told other supplementation was needed. It's only recently after finding PAS online and this site that I'm beginning to learn. So, I cannot thank you and others for the info.

[Sleepybunny]

"but struggle to walk as I have a very odd gait and I grind to a halt."

Hi,

Have you spoken to PAS about your gait?

If you leave a message on the answerphone they will get back to you within a few days.

Martyn Hooper, the chair of the PAS, developed a strange gait. He describes this in the books he has written. He found out he had subacute combined degeneration of the spinal cord due to untreated B12 deficiency due to PA.

If you haven't already, I'd recommend reading the "BCSH Cobalamin and folate Guidelines" These came out in 2014 and some GPs are not aware of them. Subacute combined degeneration of the spinal cord is mentioned in the document. I gave copy of this document to my GP. There is an article on "Subacute combined degeneration of the spinal cord" in the library section on PAS website but you need to be a member to access this document.

patient.info/health/vitamin...

pernicious-anaemia-society....

01656 769467

Office open every day except Sundays from 8am till 2pm .

patient.info/doctor/macrocy...

b12d.org

martynhooper.com/

b12deficiency.info/signs-an...

Lots of useful info on this website.

I am not a medic just a patient who has struggled to get a diagnosis and wants people to have the info they need.

I have written very detailed posts on threads over the past few months. If you search for Sleepybunny you may find them and there may be some helpful info on them.

Books

"Could It Be B12" by Sally Pacholok and JJ.Stuart

Very comprehensive book on b12 deficiency

"What You Should Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

[Hidden in reply to Sleepybunny]

Sleepybunny I do belong to PAS. I've seen a neurologist and had MRI brain scan which showed up my thyroid problem but nothing else. Thinking about it I don't know if the neurologist knew about my PA. before my first appointment with him I knew nothing about PA and its neurological implications. Now I intend to contact him about this.

Like you and many others on this site I want to be able to support and help others where possible. I've a lot to learn in comparison to you and many others. I really feel I've been left in the dark until now.

I also intend to view your suggested website and and purchase some reading that will arm me when I next visit a doctor. Depending on how I get on if needs must I will contact Martyn for advice and help.

Many thanks. 'M'

[humanbean in reply to Hidden]

I suffer from hypothyroidism, and would love to know how an MRI brain scan showed that you had a thyroid problem. What can they see?

[Hidden in reply to humanbean]

Well humanbean, the MRI was of the head and neck and when they viewed the scan they noticed there was irregularities on my thyroid. I was then advised to have it investigated to make sure there was nothing untoward going on. That investigation showed scarring -my terminology- probably caused by my Hashimoto's thyroiditis. I'm grateful that it was picked up on and immediately checked to give me peace of mind. I hope I've managed to explain it enough, I was surprised myself at the time.

[humanbean in reply to Hidden]

Ah, that makes sense. I thought it was something that showed up in your brain. I read this very short paper a while ago and was wondering if this is what was spotted :

ajnr.org/content/23/9/1539....

[Hidden in reply to humanbean]

I had a brief look earlier but will take a longer look another time. Thanks for the website.