I started my loading doses just over a year ago and ended up resorting to SI as many do around Nov 2020 as I had ongoing neuro symptoms (tingling & numbness in hands & feet, some shooting nerve pains in fingers). I now SI every 2 weeks although I still have some mild neuro symptoms (unsure whether I should be doing this more frequently). In between injections, I have been taking methylcobalamin tablets (1500mcg). A few months ago I started to get hot and red skin on the palms of my hands, upper arms, face, ears & sometimes my knees and feet. I had put this down to starting a new medication for migraine. I gradually came off this med (Pizotifen) but also ran out of B12 tablets at the time & I think I have now worked out that it is actually the B12 causing the hot flushing. Has anyone else had this experience? I don't seem to get an increase in this symptom after injections (Hydroxocobalamin). I am also confused as I would have imagined that if it is the B12 tablets causing it - maybe I am absorbing more than I thought? However, I am not vegan or vegetarian & no other cause was found for the B12 deficiency. Both intrinsic factor and gastric parietal tests were negative.
I also built up the courage to tell my GP I am SI and she actually didn't have a terrible reaction - she agreed for me to email her the research I have done and is going to speak to a haematologist - still a bit nervous for what she will come back saying. Also, not going to help my case when I tell her what I think is causing the flushing so any thoughts would be much appreciated.
Thanks
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Alpaca24
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I shoukdnt worry as long as its gone. I've had that on b12 injectionson snd high doses of vit d which at first I thought was hormonal flushes back but ir wasn't
All sorts if reasons can causes it
You could've passively absorbed some b12 from the tablet
I woudnt even mention it at this stage as it coujdve have been either.
Work it out at A later date.
Main thing is getting yiyr referral or at least opinion of a haematology
A neurologist may be helpful if getting migrains ect.
Thanks for replying. That's interesting, I had some people tell me the same about vitamin D but had tried reducing that supplement with no improvement.
I'm currently seeing a private neuro-otologist about the migraines as I've all sorts of dizziness issues with them over the past year. He is very good and I am getting better with this but I know he's going to have to write a letter to my GP regarding the flushing as he always asks them to prescribe the meds for me. Oh well, hopefully it won't undermine the other info I have given her. On another note, I did wait 14 months for an appointment with a consultant NHS neurologist & it was a very disappointing appointment - he said this can't be B12 (despite me responding to injections) & said it is stored in the liver for a very long time so there is no way I could need injections even 3 weeks apart. Plus, he then did a blood test to look at my B12 levels even though I said this was not recommended now. At least the frustration is a driving force for improving doctors' understanding of this condition - which prompted me talking to my GP!
Yrs j had a similar experience with my NHS neurologist. Who discharged me after one consult. Said I was addicted to b12 ! Also paid to see a private neurologist for migraines!
You might not get along with methylcobalamin tablets,I didn't get along with them. I can't put my finger on why, I just felt weird, fine on hydroxocobalamin though.
Thanks Sallyannl, it's helpful to hear that you had a different reaction to the different types of B12. I hadn't really considered that this might be the case.
I have been reading posts on this site for more than 6 years , and have seen quite a few posts telling of bad reactions to Methylcobalamin. I tried it once , didn’t have a bad reaction , but it didn’t seem in any way better than Hydroxocobalamin, which is what I normally inject ,and is cheaper, and more stable than injectable Methyl.
Thanks for sharing this too wedgewood. I hadn't considered that I might react differently to them. Also makes me consider increasing the frequency of hydroxo injections to see if this helps with ongoing neuro symptoms.
Do you take any other medication? I take levothyroxine which causes me to have hot flushes, it's listed as a side effect on the leaflet. It mainly happens at work when I'm moving between different temperature areas, moving from cold to warm areas. I think it is my body trying to regulate my body temperature but going into overdrive. I spoke to my GP, who ran some routine tests, then said "your fine, you need to take the levothyroxine so you'll just have to live with it".
About a year later after my annual thyroid blood test, he increased my dose and the flushing became more frequent, almost constant. I reported back to him what was happening but by this time we were in lock down and his advice was to return to my previous dose temporarily until it was safer to return for a retest. The flushing became less frequent again so I'm confident that the levothyroxine is the cause of my flushing.
PS. When I eventually got my thyroid retested it turned out that my dose should have never been changed. To me, the increased dose of levothyroxine and the increased flushing was too much of a coincidence.
Hi Adsypadsy, thanks for your reply. I do take a few other medications for migraine (low dose Propranolol & Nortriptyline) although my neuro-otologist didn't think these were likely causing it (have also been on them for a lot longer). It sounds like you've worked out the culprit - it's quite difficult when you're taking multiple meds and vitamins! Mine has been by process of elimination - firstly thought it was the high dose of magnesium that I was taking for migraine so I was surprised when it has turned out to be the B12 tablets.
Hope that your flushing has calmed down now you've decreased the dose.
I have sweat flushes, several times a day. I don’t call the hot flushes though as despite feeling as if I am hot my temperature is actually 35.7 when they are happening. I have been SI at a similar interval to you for several years and have an assortment of drugs for several problems The GP, nor the Neurologist could offer any solutions and the haematologists just ignored it when I mentioned it. The flushes can appear anytime without warning, have no obvious trigger and are unaffected by climate conditions, For a while the hypertension medication was chief suspect but no difference through changing.
I have a history of sweat flushing, usually when eating, going back many years and I caused real problems when lunchtime entertaining of clients was a vital part of my work; mid meal I would have to excuse myself as the sweat dripped off my nose and I went outside for a cool off. I wasn’t on any drugs for anything in those days. Menopausal women get little sympathy from me as they tend to have the problem for a few years not more or less constantly from age thirty and still continuing 46 years later.
I did my last hydroxocobalamin injection three days ago. The last flush was thirty minutes ago just after I woke up so a warm shower sorted that out. They can last from just a few minutes or persist for half an hour or so. A cool fan helps.
You have my sympathy. This affliction is a nuisance.
Thanks for replying. Really sorry to hear you have flushes too. I don't think my temperature goes up either but my skin feels hot to the touch - especially the palms of my hands which is strange. I SI yesterday and haven't noticed any increase today so I don't think that is affecting it.
I really feel for you too, it is much harder to manage in social situations. I cycled a short journey the other morning when the weather was warm here and my face was bright red for about an hour afterwards - I had to put a wet flannel in the freezer for a few mins before placing on my face - this did really help too!
My daughter gave me a microfibre neck scarf last summer. You get it soaking wet with cold water then wring it nearly dry. Flap it around a bit then wrap it around your neck. I works wonders. It is a lovely dark blue colour and looks cool in the fashion sense too.
Hi kcbrecks, do you happen to know the brand name of the neck cooler. I've been looking to buy one of these but all the ones I've looked at, mainly on Amazon, have mixed reviews. It would be good to have a recommendation from someone who actually uses one......if that's allowed on the forum.
She got it from a local garden centre. The label says ‘Cool Touch Ice Towel’, putting it into Google it comes up with the product from Amazon and on EBay.
I used to take 5000 mcg a day of methyl sublingual and it didn’t cause any flushing for me, I just wasn’t absorbing any of it. People are different though. If you are injecting twice per month and still having neuro symptoms, you might want to try weekly injections. I was on the same schedule and was still having some symptoms. I was so happy just to feel better that I didn’t realize I could feel even better and be symptom-free. Weekly injections helped me tremendously. You may even find that you can cut back to twice per month after symptoms subside on the weeklies. Good luck!
Thanks for replying & sharing this about your injection frequency - you've definitely convinced me to try weekly injections for a while to see if this makes a difference. I was the same as you - so glad to have such an improvement that I have been tolerating the residual tingling and buzzy feeling in my hands and feet. Good to hear you're symptom free now!
An update - pretty sure it’s not the B12 causing the flushing as I’ve stopped the methyl cobalamin tablets and I’ve held off self injecting just so I can rule out b12 as a cause and it’s not going away. Thought I’d share as don’t want others to think it was B12 causing this side effect. Also, my GP got back to me and said the haematologist said they don’t recommend injecting at a higher frequency (than the 2 month NHS injections I get) as my blood test showed B12 at over 2000 in the most recent blood test so ‘I’m no longer deficient’. Even though this test was done 5 days after SI, very frustrating - I guess I just keep SI at what I feel I need but it is hard going against medical advice.
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