strange question……. I’ve started getting a buzzing/pulsating vibration in my veins when I’m dropping off to sleep. It’s quite disturbing. It’s through my whole body. I’m sure I’ve read somewhere in another post about it but I can’t find it in the search bar🤷♀️
Is it too much Levo? Or not enough?
I’m on 100/125 mcgs alternate days.
I don’t have any recent TFTs as I’m waiting for the warm weather to stop before I send a MMH sample off.
The last ones where in May. Very low TSH/FT4 and FT3
Oh I also supplement complex Bs,D spray, magnesium, glucosamine, selenium. All from advice on here.
I used to get a similar sensation as I was waking in the mornings, but this is much more severe in intensity.
thanks 🙏
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SarahJane1471
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Everywhere 😫I’ve managed to find some older posts about it. It seems common with thyroid issues but no one seems to know why or what it is.radd thinks it’s a central nervous system thing 🤷♀️
Possibly—but I see you managed to get a dose increase with a TSH below the range last time, so maybe you’ll be lucky enough to get an enlightened doctor who doesn’t panic unduly about low TSH.
Here’s hoping! I must say though, if you tell your doctor about the vibrations they might automatically assume you’re now overmedicated. So you might want to see results before you mention it!
Internal vibrations are mentioned in many of the HU forums (see link below), and yet there is no recognition in conventional medicine.
Mine are rare now so I presume this is associated with improved health and balanced hormones. It occasionally happens if I get really tired or just party too hard. It’s always been disconcerting and more of an encumbrance as could wake me or keep me awake literally switching on & off just like a humming fridge several times a night or remaining with me for hours during the day.
I used to think it was connected to poor adrenal function and now more to do with some dysfunction concerning the parasympathetic system. Maybe a combination of the two. It only seems to happen to people why have suffered ill health for some time.
Have you read the Suzy Cohen's article on ‘small fibre neuropathy’? I have previously suffered muscle pain and numbness but not any more, and I like that she mentions international vibrations as a symptom of SFN.
radd Thankyou for that. I did find some posts but only after I’d posted mine and scrolled down 🤦♀️I really must get a grip on this. I will read your link. It seems strange that so many people have this issue but even Drs don’t know what it is 🤷♀️.
Mine only happens when I’m dropping off to sleep. I mean that moment when you are passing from awareness to sleep (if that makes sense 😂)
HiI used to feel this in my bed before I was diagnosed and for quite some time after. I never even equated it with thyroid until I read someone posting on here about the same thing! I only ever got it in my bed at night. Strange feeling. I hardly ever feel it now. I think that as well as my thyroid being low, all my key vitamins would have been as well. You'll have a clearer picture of what's going on once you have bloods done. I never ever mentioned it to any doctor. They all think I'm mad and making up symptoms as it is without mentioning that my body was vibrating on the inside!!! It was quite reassuring to read other people had the same thing! Hope you get sorted soon.
Thankyou………it is comforting to know you are not alone with symptoms. The link that Radd posted by Suzie Cohen is a good read. Blood test next week may give me some answers
Hi. I get these symptoms when I’m heading overactive with very low tsh like 0.5 and below. I aim for tsh at 1.2 then I don’t get them. I explain it as the metabolic rate picking up and everything moving a bit faster: note the thumping heart rate sound in veins. I suggest getting you tsh level checked and then adjust Levo accordingly.
Thanks for your reply. I know my TSH is very low. But so are my FT4&FT3 so if I lower Levo I’m probably going to fell rubbish again….,,,and I’m not great now 🤷♀️.I’m doing a home blood test on Monday so watch this space
I am literally just waiting on GP appointment as I started getting a vibrating feeling in my left leg about three months ago. Sometimes it’s all day, sometimes not there at all. It’s driving me mad. Like a phone is constantly vibrating on my shin. I also have random tingles and numbness all over my body, tops of feet, sometimes arms hands, lips!
Could it be your Vit B complex? My husband asked for Vit B, folate and ferritin to be tested at his latest annual check. They all came back low so I started him on Thorn Basic B complex. He took one capsule and the next day he had a really weird sensation in his arms and has refused to take any more. Now there’s a man who doesn’t usually have any problems with side effects from anything and everything 😱
I just wanted to give an update ………. Ive stopped taking Thorne b complex and have NOT had the pulsating/buzzing in my veins since.🤷♀️ So maybe it was the B6 …… I also have not had green urine since.
I still get burning feet 🦶 but I think that’s more to do with the fact that it’s flippin hot 🥵
"In humans, there is no evidence for riboflavin toxicity produced by excessive intakes and absorption becomes less efficient as doses increases. Any excess riboflavin is excreted via the kidneys into urine, resulting in a bright yellow color known as flavinuria.[5][27][31] During a clinical trial on the effectiveness of riboflavin for treating the frequency and severity of migraines, subjects were given up to 400 mg of riboflavin orally per day for periods of 3–12 months. Abdominal pains and diarrhea were among the side effects reported."
In contrast to the amount of riboflavin mentioned in the above experiment, Thorne Basic B contains 10 mg.
Personal anecdote...
Back in about 2010/2011, before I started taking a real interest in my own health, I took a Holland & Barrett B-100 B Complex product. Every ingredient was either 100mcg or 100mg in quantity, apart from folic acid which was 400 mcg.
To begin with it was fine. Some pain and tingling in my feet slowly disappeared. I kept taking it. For a few weeks my feet were fine. Then the pain and tingling started coming back. I investigated and discovered that B6 has toxicity symptoms, including peripheral neuropathy, and so does B6 deficiency.
I stopped the H&B B-100 B Complex completely, and never took a B Complex again for several years. I now stick to taking a B Complex that doesn't contain huge amounts of the B vitamins, and I haven't had any further problem with my feet.
When I started taking it in the B100 product I mentioned above the pain and tingling in my feet went away, so I suspect that I was deficient to begin with. It took about 3 months for this massive dose I was taking to build up into an overdose and I got the problems again (although they weren't exactly the same, I can't remember exactly how deficiency and toxicity differed because it was about 12 years ago now.)
If you come off any product containing B6 for, say, 2 - 4 weeks you might be able to tell if your problems are increasing or decreasing.
I came off and the buzzing went. That was 3 weeks ago. Just had some very stressful news 2 days ago and the buzzing is back with a vengeance 🤦♀️. I’m kind of thinking it’s central nervous system as my PTSD has kicked in with this bad news.
Hallo, I'd be interested to hear if you get anywhere with this or how you're tackling it. Mine started within days of starting taking Levo and has never gone away (5 months later). The only relief I get from it is when I increase dose - with the extra before my body gets used to it, I have a day or two with nothing at all and then as I get used to it, back it comes earlier and earlier, to the point where the dose makes no diff at all. I'm getting worried as I am nearing the GP's happy limits on blood tests (actually TSH has gone way under) on only 100mcg which is not even my bodyweight dose, so not sure if I am ever going to be able to get to 'optimal'. Have you got anywhere with yours?
I had a little bit in the bottom of one leg at night, that was all. Did you? Once or twice I had both legs kick off (no pun intended) but I put that down to sciatica. Within days of starting the levo it spread to my whole body. I read the article link that was sent to you on small fibre autoimmune neuropathy and it's exactly the kind of thing you don't want to read. I just was hoping you had got somewhere with yours and that it wasn't the small fibre, doom, issue.
well no! Mine in fact has got worse since I had Covid the end of last month…..,. I don’t seem to remember having it before Levo. I’m wondering if it is a side effect 🤷♀️……, I’ll do some research
there is a tonne of research on the net . I typed in Levothyroxine and Central Nervous System. Much of it is above my knowledge but it looks like there is a big connection with thyroid hormones and myelination of nerves 😬. So it could be a side effect OR too little Levo 🤷♀️
oh no hang on I need to look that up. Are we doomed?
With me I was just wondering if it was the autoimmune issue; because my thyroid antibodies were not too bad before starting levo but a few weeks later, huge increase in the antibodies. So having read that article I wondered if the auto-immune antibodies are eating my nerve endings (I don't know if it works like that, I'm just summarising because that seems to be what the autoimmune SFN is). I'm scared that means doom too. Wish I had never seen any of this TBH and still just thought it was a hypo symptom. It's just not going anywhere and it scares me that it's never going to, hence I was hoping you had some joy with yours. I'm so sorry yours has worsened through covid, it's horrible to live with.
Sorry, the bit below has turned into me answering humanbean, I was not meaning to hijack your post, I was as I said just hoping you had found something to help.
I've had internal vibrations on and off for years. In my case I discovered it can be caused by high or low cortisol.
I have been taking a supplement to lower my cortisol for several years (about 7, I think). I started off at a huge dose and whenever I got the internal vibration I knew it was time to reduce dose. I have come off this supplement for the first time in the last week or two, and am still keeping my fingers crossed that I won't get a return of symptoms. Hallelujah!
But before I ever started taking this supplement, and my saliva cortisol was way over the range, I would get the internal vibration quite often when I was under stress.
I've just ordered a saliva test, I was going to get in touch with you to ask you if you could say any more about the cortisol issue that you mentioned to me a few months ago (when I was looking for info about this problem for the 2nd or 3rd time) - but then I have read about cortisol. I got a bit stumped as it seemed you needed something called ACE or else steroids to treat it & thought, saliva test next.
Please, can you give the info for the supplement you've been using?
I'm so glad the supplement has worked for you and will keep everything crossed for you that you stay vibration-free.
Did you also have yours investigated to rule anything else out? GP's have never heard of it and have bt'd me for everything, if I mention it again it will be neurologist referral & I'm trying to find anything else to help rather than be told it's something dreadful - as I read it the auto-immune small fibre neuropathy is untreatable and progressive. I am getting to the point where I'm really worried now that mine's not going anywhere and have lost count of the number of time's I've thought, I just can't do this any more.
I think I remember you saying, people with the vibration/cortisol issue have trouble raising their T4 levels, is that right? (if so I think I read that that's because the T3 can't access the cells or reverses?) I'm having to split-dose as when I reached 100mcg, taking it in one dose left me what felt like hyper for 2 hours then basically hypo for the other 22 out of 24, very difficult to sleep, not sure if that fits the profile.
I have also been told it's a hypo symptom, again GP's never heard of that. As am not quite at bodyweight dose and hitting the ends of the bt limits, am not sure I can keep thinking right, just more levo and it will go away, as shortly it may not be possible to take more levo.
Make sure you shop around if you buy it - the price varies a lot from site to site.
Did you also have yours investigated to rule anything else out? GP's have never heard of it
I didn't bother discussing my high cortisol results with a doctor. I thought it would be a waste of time, but then doctors aren't my favourite people.
I find it baffling that doctors haven't heard of high cortisol before. Cushing's Disease or Cushing's Syndrome exist and are a cause of high cortisol. I assumed my cortisol probably wasn't high enough for Cushing's because I didn't have that many of the symptoms, and I was already treating my own thyroid and my own low iron, so I just thought I'd experiment on my own.
The peripheral neuropathy problem I had was caused, in my case, by a deficiency of vitamin B6 which I then over-treated and eventually developed toxicity issues.
I think I remember you saying, people with the vibration/cortisol issue have trouble raising their T4 levels, is that right?
I don't remember saying that. My own problems with T4 were a result of me having extremely low iron and very high cortisol. Just because they were my problems doesn't mean they will be the same for everyone.
There are a lot of people who don't cope well with thyroid hormones like Levo because they have very low cortisol, but not low enough to be diagnosed with hypocortisolism or Addison's Disease.
Low vitamin levels are often a cause of poor conversion from T4 to T3. But although my problems were mostly iron-related, other people might have difficulties with, for example, low vitamin B12 and/or low folate. Some people do well taking selenium which is supposed to improve conversion as well.
Talking about split dosing, I had to do that when I started taking T3. At one point I was taking T3 in tiny doses five times a day because I couldn't tolerate it any other way. In the end having discovered my cortisol was very high in the morning I started taking my first dose of T3 in the afternoon to avoid a clash between thyroid hormones and cortisol. It worked, in the sense that I could tolerate the T£, but it wasn't a good long term plan. But I did lots and lots of trial and error.
Taking more and more of anything - supplements, thyroid hormones, cortisol supplements to raise or lower levels, etc isn't a good plan.
So does the holy basil reduce cortisol? Obvs I'm not going to start anything for cortisol until I know which way (if any) mine is, but it's good to know what is working for other people.
In my message, I didn't mean the GP's had never heard of cortisol issues, I meant that out of 4 GP's I have seen (can never get the same one), none had heard of the fasciculations, all said 'it's not normal' which does not fill me with confidence, and then when they have ruled everything out with BT, are stumped, so neurologist referral is all that's left. Yes I am willing to try any supplement rather than face things like lumbar puncture or being given a diagnosis for one of the biggies that are terminal, particularly because I can't grasp how something like that can have kicked off within days of starting levo. My fear about the autoimmune small fibre neuropathy is that it sounds right, so I will have to raise that at next appointment and see if whichever GP has even heard of it.
Ok someone else mentioned cortisol and not being able to raise T4 sufficiently, I'll have to go back and look for that, or forget it until I see cortisol results. I have no idea if I can even get the cortisol test right, the instructions alone are a struggle with brain fog.
As for not taking more and more things; I don't know what I'm doing. It seems that everyone here takes a lot of supplements and advises it, I have been following advice, to try and help myself get well. Just when I think I've reached a bit of solid ground, something else happens; I start getting migraines with aura that last for days (thought I was having a stroke), two in a week; return a dodgy BT, have to change GP again, or someone directly contradicts advice about supplements I had been following like it was gospel. On diagnosis I stopped taking everything else because I had no idea what was safe; since finding the forum I am now doing Thorne B, iron (again, literally trying any kind of iron I can because ferritin is not budging), magnesium, potassium, B12 and folate when I have to stop the Thorne for a BT, probiotics, L-glutamine, D3 &K, progesterone cream, magnesium cream. All advised for the various problems with being hypo and for the rattling. Someone said NAC; smells like the devil's bum so I couldn't stomach it. I am scared and stressed by the whole thing. GP says, what about trying HRT; but read that oestrogen dominance makes hypo worse, so no idea how to think about that, or does it just not matter now I'm on T4 anyway?
Most confusingly over Iron and B vits; Rheumatologist says, ferritin is low, take iron. Ferritin has only gone up with supplements from 4 to 34 in 5 years. Apparently ferritin needs to be 90 to feel well; but it is really dangerous to supplement on the basis of a ferritin score only (in spite of rheumy and GP saying, supplement). Repeatedly asked for iron panel to be done with bt, but it's never done, so worked out that now I have to buy I private iron test. And in the mean time worry about the contradictions not knowing what I'm doing right or wrong. B vits; someone says B6 can cause neuropathy, take B12 only with folate. Then someone says don't take separate B vits, take Thorne B complex; which has B6 in it and as SarahJane above mentions her 'buzzing', someone else says stop the Thorne. So back to B12 and folate only? No idea, only know that I am a veggie and need to get some B's somehow. The GP's are all singing from different hymn sheets and as you say, not our favourite people because they actually care less than anyone on this forum who wants to help. I have read everything I can about Iron and B, all the links sent by members, and I still don't understand the relationship between iron, ferritin reserves and thyroid (and I've got 3 degrees); did being hypo cause my low ferritin or vice versa? Where is all the iron going that I'm taking if my ferritin just isn't going up, do I just not absorb it? My kidneys are fine so it's not there. And at the end of the day - do I want to be spending all day every day not knowing what I'm doing to myself, feeling ill and scared, and unable to actually do anything at all other than dose, food, vits, starve, (buy another supplement or test), dose, food, vits, try to sleep, whole existence overshadowed by returning the bt's at the right levels to make GP happy; all the while scared of the rattling, being underdosed, overdosed, arguing over prescrips, fear of reductions/refusals, and now scared of more migraines too. I used to have a life and now am just sick, and this seems normal for people with hypo.
When I said, did you go to the GP with yours, I meant, did you have your vibrating investigated at all?
(I'm not expecting you to answer all the question marks on vits etc, just saying how utterly confused I am).
It is essential to get cortisol tested before embarking on any supplement regime to lower it or raise it.
When I did my first ever saliva cortisol test it was just before I was due to go on holiday for two weeks. I was absolutely convinced I had low cortisol so I bought an adrenal glandular. A couple of days before I went on holiday I did the test and posted it off. Then the next day I took my first adrenal glandular. I think the first day I got a mild boost of energy, but as the holiday went on I got more and more irritable, angry, bad-tempered, barely slept, had regular long-lasting headaches and sweated almost constantly.
When I got home my results were waiting for me, and my cortisol showed up as well above range for three of the samples and 90% through the range for the other one. I stopped taking the adrenal glandular and have never taken one since.
With cortisol it would be foolish for most people to guess whether it is high or low. I suppose it is possible that someone with Cushing's (super high cortisol) or Addison's (super low cortisol) might recognise some of the symptoms, but for people with cortisol levels in between those two extremes the symptoms are not definitive.
Brilliant, this is extremely helpful, thank you very much indeed for all the links. I'll be doing my test hopefully on Monday so will see what comes back. I've read about Ashwaghanda being an adaptogen too but again it seems, on what I can find, to lower cortisol.
I meant that out of 4 GP's I have seen (can never get the same one), none had heard of the fasciculations, all said 'it's not normal' which does not fill me with confidence, and then when they have ruled everything out with BT, are stumped, so neurologist referral is all that's left.
When my fasciculations were at their worst ever I was in hospital. I managed to get a copy of the blood tests I had done and discovered that my potassium was absolutely rock bottom in range. To ward off cramp, tics, spasm, fasciculations, etc, or to treat cramp if I get it, I take a quarter teaspoon of potassium bicarbonate and a quarter teaspoon of magnesium citrate in orange juice just before bed. It works most of the time. Another option I use (in the mornings) is to take a quarter teaspoon of potassium bicarbonate and a quarter teaspoon of good quality salt in orange juice.
I don't take either of these concoctions every day. And I only feel safe taking them because I know my kidneys function reasonably well.
...
iron (again, literally trying any kind of iron I can because ferritin is not budging)
Have you seen this reply to another member on iron supplements available?
I don't know what you are taking in terms of iron supplements, what dose, what strength or how well you are tolerating it. If you've read my history with iron you'll know that it took me nearly two years to raise my ferritin to mid-range and despite that my serum iron was still very low. I ended up after a few experiments just accepting that I can maintain my ferritin at mid-range but my serum iron is just going to stay low.
Some of the problems that can occur with iron are discussed in this thread :
I am now doing Thorne B, iron (again, literally trying any kind of iron I can because ferritin is not budging), magnesium, potassium, B12 and folate when I have to stop the Thorne for a BT, probiotics, L-glutamine, D3 &K, progesterone cream, magnesium cream.
I would stop the magnesium cream OR the magnesium supplements. Take one or the other but not both.
Potassium - what form are you taking it in? What dose? How many days a week?
Why are you taking extra B12 and folate when you don't take the Thorne Basic B? You won't come to any harm not supplementing B vitamins for a week.
I don't know what benefits you get from progesterone cream. Sex hormones are a big black box mystery to me, because I was never able to tolerate HRT in any form or any dose after my hysterectomy.
I've taken probiotics and L-glutamine in my time. I don't take them now, but I have also hit a brick wall when it comes to taking supplements. I take a lot but eventually I say to myself - enough!
I take breaks from most of my supplements from time to time.
Sorry, I'm not feeling well at all today so briefly, my kidney function is good (tested twice in 4 months), am taking potassium chloride at night (following last convo with you) either 200, 300 or 400mg per day (400 is only 20% NRV, I rotate rather than keep taking full dose )and I do have the odd day off; also eat a banana for breakfast. B vits when not taking Thorne - have had monthly bt's all year and a couple of times twice in a month so have kept having to stop the Thorne, again have been following (someone else's) advice about keeping B12 up.
Not that I would wish it on anyone, but I find it comforting to hear I'm not the only one struggling to get ferritin levels to move, I see so many stories of people going trala, 0-100 in 3 months, and wonder why not me!
Difficult, isn't it, to find a balance. In my case, it was accepting the diagnosis of fibromyalgia and just living for years highly symptomatic, that got me to the point where I was very hypo and then had to tell the GPs (and have them confirm by bt). But the whole of this year being taken up by one bt after another, the whole crazy and sad hoopla of being a hypo patient, has made me desperate to go free-range again.
Not to confuse you further 🤪 but feelings of vibrations was one of the early signs of functional B12 deficiency that I had. "Functional" because my serum b12 levels were fine, and went up with tablets, but apparently it wasn't getting into my cells. I used to also get feelings of bugs crawling in my hair at night, and noticed that my limbs would fall asleep very quickly when for example propping myself up on my elbow or crossing my leg. B12 Injections have been the only solution. I just mention it because though it might be rare, i wish someone had mentioned it to me years ago. I didn't know anything about b12 deficiency / pernicious anemia until one day i woke up and both arms were totally numb.
thank you for this, I find some of the list of symptoms - the medical terms - a bit above my head! many of them are the same as being hypo, so what was it that made you look into it when your bt's for b12 were showing normal?
That's a bit the problem, isn't it, that so many symptoms overlap. In my case, it was easy, my arms - from fingertips to elbows - were totally numb. I had zero feeling and the muscle was paralyzed. After doing some reading, I determined that B12 was the only plausible explanation (well, apart from things like stroke, MS, etc) - and a trial of B12 was relatively easy to initiate. So I started injections and tracked symptoms - things started improving so it seemed that functional B12 deficiency was indeed the problem. I had no other choice - my GP completely dismissed me and the neurologist was even more useless.
My personal feeling is that if there are nerve related symptoms, even in the absence of distorted labs, then things like tingling, pins n needles, vision problems, and balance issues, strongly point to B12 deficiency. And if that includes struggling to optimize thyroid for a long long time, and all other thyroid-related options have been exhausted, in my book that's another reason to worth exploring it. At least, it's worth ruling out by whatever means possible. In my case, all labs were normal, so the only way to rule it out was to trial injections.
It must have been quite scary for you, having symptoms like that, but particularly with the usual GP response of not listening! I'm glad you managed to get well. I have seen that there are high-strength patches now to avoid the whole gut/conversion issue; the one good GP I briefly saw recommended doing as much as possible by patch when you are hypo, which makes sense. Thanks so much for all this.
Thanks, yes it was a very challenging time, and I was (and still am) quite angry at being dismissed by doctors.
On the pernicious anemia / b12 deficiency groups, there does not seem to be too much success using patches. The thinking is that the B12 molecule is too large to be effectively absorbed through the skin. I'm guessing it's one of the reason why B12 is (probably) more common than other vitamin deficiencies - it is a very large molecule that requires many different B12-specific transporters to get it from the stomach to the blood and then into the cells.
Hallo, Was there any way to test if your functional B12 was low, before you started the injections, or did you have it tested at all?
Could you please explain more about how you started with injecting B12, what you did, how your sourced it and so on, what you did/do and for how long, please?
I'd be happy to share, but I also highly recommend you join the Pernicious Anemia/B12D group here on HU. There are many helpful and knowledgeable people there, and they will give you much more comprehensive info for example on ordering supplies healthunlocked.com/pasoc
Hallo, Was there any way to test if your functional B12 was low, before you started the injections, or did you have it tested at all?
Yes there are, and I did. The following tests are helpful. There are private labs in the UK if your doctor is not helpful. See for example this post for private labs: healthunlocked.com/pasoc/po.... See also the PA/B12D organizations overview of blood tests: pernicious-anaemia-society....
- Active B12 - will be low in B12D
- Homocysteine - will be raised in B12D
- Methylmalonic Acid (MMA) - will be raised in B12D
- Intrinsic factor antibodies - IF blocks the absorption of b12 from the intestines into the bloodstream.
- Gastric parietal cell antibodies - Antibodies that attack the stomach cells that produce stomach acid and IF.
- Folate - needed by the body's processes to optimally use B12
- Full blood count --> MCV can be raised in PA/B12D as red blood cells get larger due to the deficiency = this is macrocytic anemia. RDW, which is Red Blood Cell Distribution Width, can also be elevated. However, Low iron and supplementing with folate can mask these distortions. Also, changes to RBCs can be "late-stage" findings, so not everyone with neurological symptoms will show macrocytic anemia! This is a common misperception among doctors.
- A serum iron panel can also be useful to help interpret the full blood count (plus so many of us suffer from low iron)
So I had all these tests done privately, and almost everything came back "normal". I had one test where MCV was just slightly above the range, but MMA, Homocysteine, and antibodies were all negative. I had been supplementing with B12 sublingual tablets for years. At that point, my options were: (1) stay off B12 tablets for 4 to 6 months and *hope* that my blood levels would should low B12 and/or out of range values for the other tests. (2) Do nothing and hope it was like the GP said - due to swelling. (3) Pursue help from a neurologist or hemotologist and hope they would diagnose/treat based on symptoms, since all my labs came back "normal". Or (4) Start self-injecting B12 and keep my fingers crossed.
Well, I was in no state to do (1), as both my arms, hands, and fingers were already completely numb. I couldn't squeeze bottles and it was difficult to even eat with a fork and knife. Cognitively I was also very very bad. Doing (2) would've meant continuing to get worse, so that was out. And I didn't believe for a second my arms were totally numb due to "swelling". And (3) could have been an option but I decided I couldn't wait. Just as well, because the neurologist I saw a few months later totally dismissed me as well. So I went with (4)!!
Could you please explain more about how you started with injecting B12, what you did, how your sourced it and so on, what you did/do and for how long, please?
I bought a couple of boxes from a German pharmacy (see below). The first injection should be done in a medical setting, due to a rare but potential anaphylactic allergic reaction to the cobalt in B12. I was stuck - no medical person wanted to help me. Well, my husband's sister is a nurse, so we convinced her to give me my first shot. All was fine. Some people consider doing their first injection in the parking lot of a hospital. Needs musts!
So after I got my first shot, I just kept going on my own, every day. I followed the UK guidelines that when you have neurological symptoms, you need to inject every other day. (In fact I needed it more frequently than that, which also happens). I kept a logbook where I noted what I took and the severity of my symptoms, every day.
Like many people who start injections only after becoming severely symptomatic, my symptoms got *worse* before they got better. While scary, it was a sign that B12 really was the issue. And I slept for 3 days straight after my first injection. I continued to need long naps every day for many months. It was a real roller-coaster the first year. Some days I'd feel much better, other days I couldn't get up off the couch and everything was burning and painful. I kept on going because I had read so many stories that this was all very typical in the early stages of injecting. And, it eventually did get better!
I started this process in October 2016. 6 years later... I still need to inject daily, and I continue to get better and better.
The thing is, healing from B12D can take a long LONG time. It took me several years before I was able to do more than just 1 thing a week. It took me 4 years before I was able to work just part-time, and I was barely managing that. Now after 6 years, I'm only just starting to feel "normal" and no longer have to map out whether I will crash after a certain activity or trip. But, I was quite ill when I started.
After my ordeal, we figured out that two of my relatives also had (suspected) PA. They start injections before they got as bad as I did, and they have healed much more quickly and don't need as much B12 as I do.
It's all very individual - some people need to continue injecting daily indefinitely, while others are able to reduce to once a week or even less. We judge our need by our symptoms. People on the PA/B12D forum can also help with interpreting symptoms.
If you go on the PA group, you can see the posts from "wedgewood" explaining how to order B12 ampoules and needles/syringes from Germany, where B12 is available without a prescription. healthunlocked.com/user/wed...
I hope this has answered some of your questions. Come on over to the PA/B12D group and you will find lots of helpful people.
Thank you so much, for such a detailed and full reply - I'm just going to sit and read and try and digest it all. I'll come back to you with any questions if I may. Thanks again.
for those following this post …… I have worked out a technique to stop the vibrations. I get mine when either dropping off to sleep or just waking up (sound familiar?). What I’ve also noticed is that when I am particularly stressed ( I have PTSD) it’s worse. I think this is linked to my Central Nervous System as when I’m dropping off/waking I frequently have “Shit FM” playing in my head. So this morning when the vibrations started I used a mindfulness breathing technique and realised that my body was very tense. As I breathed out I relaxed my body and felt the physical tension ease, vibrations stop and I dropped off to sleep 🤷♀️.
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