Still Feeling Horrible - Help Please

[AutoimmuneAnnie]

I am so frustrated and don't know what to do. I was diagnosed as B12 deficient about 10 years ago, earlier this year with the help of this forum I started to self inject and felt wonderful, now I'm feeling not so wonderful and have weird symptoms, namely COLD HANDS AND FEET, TWITCHING LEFT EYE, WIRED BUT TIRED, SAYING THE WRONG NAME/PLACE ETC. GET PINS AND NEEDLES WHEN I HOLD SOMETHING IN MY HAND OR GET PINS AND NEEDLES WHEN I SIT ON ONE SIDE & HEADACHES THAT DON'T RESPOND TO PARACETAMOL. HAIR FALLING OUT

I am injecting Hydroxcobalamin every other day, taking folate ,iron, Vitamin D3 and Armour thyroid for hypothyroidism. How can I possibly be deficient in B12 when taking such large doses? It is so complicated. I don't know what to do. I feel I can't go to my doctor because she doesn't know that I self inject. I can't cope with the hassle and lack of help and support from her. I felt so wonderful when I first started to self inject now I feel that I am slowly going down hill again.

I accidentally posted this on Thyroid Uk and got some supportive replies but wanted to post here also in case anyone suffers similar and can guide me.

Thank you in advance.

[AutoimmuneAnnie]

A couple more things, I am also suffering with indigestion like pain which I have had in the past when needing my B12 injection, when I was on 3 mthly injections.

I have tried the B12 boost spray with Methylcobalamin in it but it doesn't make any difference to me. I have also tried Methlcobalamin injections, again, no difference.

Any advice greatly received.

[wedgewood]

Sorry to hear that you are so unwell. The cold hands and feet and hair falling out sound like throid problem Perhaps that needs looking at again and medication adjusted

I did come clean to my doctor that I self-inject, Can you not do that? Twitching eye--lack of magnesium? My doc didn't approve of my self-injecting but she wasn't awful about it.

Sorry I'm not much help, but I wanted to respond to you . I'm sure you will get much better help from someone else later on when people come home from work.

You will get some good advice I'm sure. Hang on in there!

Very best wishes to you

[annebalto]

Wow, you are injecting every other day. Have you had your blood checked? Seems a lot to me. How long have you been on this dose? I'm every 10 weeks. Could do with 5 week ones. I get the symptoms you get, but also have neuropathy of the feet. This not controlled yet. 😰

Anne 😀

[Sleepybunny]

Hi,

I remember reading on this forum that some people experience an autoimune response to high levels of B12 in their blood. I think it may have been Gambit62 that mentioned it but I can't find the actual post.

[sweetnessandlight]

I have an appointment with my doctor this afternoon due to exactly the same symptoms. I only get my jabs every 8 weeks but I have recently noticed that the jab doesn't improve my condition at all. I am hoping to discuss thyroid problems but also the beta blocker I have been on since just before my PA diagnosis. The listed side effects are the same and it also masks thyroid problems. I do think increasing b12 will be the elephant in the room but at least if I can find out why I am like this I can fight for what I need.

[Gambit62 Administrator]

There is a thing called 'functional deficiency' - which happens when you have high levels of B12 in your blood but none of it is actually getting through to the cell levels.

One possibility is that your body may be responding to high levels of B12 in your blood by creating 'antibodies' to TCII which transports the B12 to the cell level - I think this is probably related to a group of genetic mutations grouped together under the name MTHFR. Exactly what effects happen depends on what genetic variants are involved.

I get through a huge amount of B12 and it works for me in terms of being able to really function as a human being - and suspect that functional deficiency is the factor - seems to be true for my mother as well though not so easy to get levels sorted out for her as she has multiple other problems and a significant amount of cognitive decline which might be B12 but could also be diabetes. For some people keeping levels astronomic seems to work. Lucky that B12 isn't expensive relatively speaking, it isn't toxic, and I have the financial resources to treat and try things out for myself.

Might be worth looking at other forms of B12 or even at a different form of delivery.

Suspect I'm rather (in)famous for advocating the potential benefits of nasal sprays which work very well for me ... but we are all individuals and that may not work.

[AutoimmuneAnnie in reply to Gambit62]

Thanks Gambit62, how would I know if I have functional deficiency? Like I said when I first started to inject very regularly I felt wonderful, it is just the last month or so that I have started to feel very fatigued again.

I have tried the Methylcobalamin B12 spray, that doesn't seem to do anything for me. I also tried Methylcobalamin injections and they didn't work either, which I thought was very strange because as I understand it all B12 converts to Methylcobalamin and the other one Adeno, or something like that.

May I ask which nasal spray do you use and what is your current treatment regime?

[Gambit62 Administrator in reply to AutoimmuneAnnie]

Think trying to get a formal diagnosis of functional deficiency is generally quite hard - think there is a test for TCII problems but, if you are UK based think that is going to be really difficult to arrange - referal to a neurologist may be the best bet but you'd really need a lot of luck to get the right neurologist.

I use methyl, adenosyl and hydroxo. In terms of bio-chemistry hydroxo is the one format that can't cross the blood brain barrier but methly and adenosyl should be able to - however, it is hydroxo that works for me when it comes to neuropsychiatric symptoms - so quite obviously it isn't just a question of having a methylated form - there has to be something else going on - probably the way the body processes other forms to get to methylated forms.

I source sprays from a company called detox people - and I use a lot of B12 - methyl x 2 per day (2.5mg am, 0.5mg evening), hydroxo x2-3 per day (1mg) and adenosyl x2 per day (2mg). I probably don't need all of that , though I do notice some symptoms coming back ...

[fbirder in reply to Gambit62]

The MTHFR mutations have nothing at all to do with any possible autoimmune response to TC2 (and I can't find any evidence at all for such a thing). It is possible (because I've got it) to have a mutation that reduces the production of TC2.

To explain a bit...

To enter the cells cobalamin must bind to the transporter protein TC2, to form holotranscobalamin, otherwise known as 'Active B12'.

Functional deficiency can be inferred via a couple of tests. If your total B12 is 'normal' but your MMA levels are high then that means that whatever B12 you have in your blood isn't doing its job properly. Similarly, if your total B12 is 'normal' but your levels of active B12 are low that would imply that you aren't producing enough TC2, so not enough B12 is getting into the cells. Either situation I would describe as being 'Functionally Deficient'.

[AutoimmuneAnnie in reply to fbirder]

Thanks for your input fbirder, very interesting. What is the cause of action and treatment regime for being functionally deficient?

[fbirder in reply to AutoimmuneAnnie]

Well, my planned course of action will be to try and persuade my GP to prescribe injections once per week. If he agrees, that's good. If he doesn't then I shall ignore him and get the stuff myself.

But my GP seems quite intelligent, so I hope he will treat the symptoms, not the numbers.

[AutoimmuneAnnie in reply to fbirder]

I hope you manage to convince your doctor and start to feel better soon. So the course of action is to take more B12. I am already injecting 3 times a week & feeling dreadful. Oh well back to the drawing board for me. There must be something else causing my symptoms.

[fbirder in reply to AutoimmuneAnnie]

I really would go to your GP and tell him that you're injecting and ask to get referred to a haematologist.

I see that Armour Thyroid isn't a recommended treatment for hypothyroidism - british-thyroid-association... - I'd also ask your GP to test your thyroid function and to prescribe a recommended therapy if there is a problem.

[AutoimmuneAnnie]

Thanks for your message. Can you clarify the amount of hydroxo you use daily, is it 2 or 3 x 1mg a day? Total 2 or 3mg daily? 2 or 3 injections? That seems a lot, I am currently on 1mg every other day, initially felt good, now symptomatic again.

And the Methyl and Adenosyl you use, are they sublingual or nasal sprays?

Thanks for your help.