I have been experiencing blood spots under the skin on the tops of my arms near my wrists for months now- it seems that they coincide when I need more B12. I SI methyl once every 5 days. Has anybody else experienced this?
Another question- I know that B12 is depleted when one exercises but the other evening I worked out harder than usual at a water aerobics class. This was on a Tuesday, 2 days after an injection. I was wasted the next day ! So on Wednesday I SI another dose (1mg) and it helped some but not a whole lot- still felt unbalanced, tinnitus very bad, energy not great. Planned to go to the gym for water class on Thursday and fell asleep for 3 hours instead. Can exercise wipe you out that much??
Thirdly: It's a long story but I never got loading doses. Sometimes I feel that if my body is a gas tank, I'm only ever putting in one dollar at a time with the B12 instead of having an almost full tank that I top up. Does this make sense?
Any thoughts would be appreciated on all three of my concerns.
Thank you!
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ndodge
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I am really interested in this though I don't have an answer, just a similar experience. I get blood spots on my inner thighs and a recurrent bout of hives on top, usually corresponding with the levels getting low (judged on how I feel not lab test obviously).
I had five loading doses over a year ago and had been supplementing with sub-linguals etc to get between maintenance shots. When I started to feel better around August last year I resumed my usual exercise regime of 10km on the water rower three times a week. Health went into a nose dive and I have been unable to recover properly since. The blood spots/hives started around that time.
Thanks for sharing your experiences. I tried to upload a photo of my spotty arm but can't figure out how to do it, just to see if our spots are similar looking. It is very interesting, though, that we have this same sign/symptom! I supplement with sublinguals, also between shots.
I am so sorry to hear about the nose dive in your health from exercising. It is so frustrating when one is trying to do something healthy only to have it backfire. Can you exercise at all now? My doctor told me to exercise at a gentler pace. I'll try that.
Gambit62 wrote that adenosyl could help with exercise- funny I just ordered some adenosyl sublinguals. I'll let you Know if they work!
Again, thanks for your reply, it made me feel supported and less alone in all this. Best of luck with feeling better, too.
I have cut out the rowing and now just try to have an hour's brisk walk a day. Not being able to do more vigorous exercise is annoying.
I have tried to find photos of blood spots/rashes on-line but can't find anything similar. I doubt it is possible to upload images directly into the forum but it is probably possible to link images in Dropbox, Google Photos or similar.
Good luck with finding some answers. It always helps to know you're not the only one x
An hour of brisk walking a day is still pretty good exercise!
But still, when you want to do more and can't, it is frustrating. I am just doing swimming 3 times a week but will have to step down the pace at which I exercise until I can get a handle on my energy/B12 levels.
I'll play around with Dropbox and the photos. And I'll definitely post again if I find that the adenosylcobalamin sublingual helps. I have high hopes.
If I find any answers for the mysterious blood spots/rashes, I'll let you know also.
And it does truly help to know one is not alone in all of this!
I said I'd get back to you about the adenosyl, (supposed to help with added energy) although this is later than I intended.
But first: Blood spots haven't come back since I have been SI ( with B12 ) 2x a week.
I tried the adenosyl in drop form from what I believe to be a reputable company, but of course it was online, so who knows?
It didn't work at all for me, in fact, it took away energy. I ran this by the pharmacist who said he believed the methyl and adenosyl were competing for receptor sites in my body. So I'll just stick with methyl, seems to be the one for me.
Hope you are feeling better and more energetic and that your spots have gone away, too!
Hi Nodge, pleased to hear you are making some progress. My blood spots and hives have not recurred since bumping my sub-lingual intake to three 5mg tabs a day (minimum). Beginning to think self-injecting will be cheaper and more efficient!
On question 2 I've been "living" with P.A. for 45 years and normally have always avoided exercise like a plague but last April I was diagnosed with Type 2 diabetes and in addition to taking Metformin and "watching my diet" I was also told I must exercise.
Six months ago I bought myself a mini exercise bike which is power assisted (1 - 12 speeds, timer, distance & calorie counter) and I can use it sitting down and although I only do 20 minutes a day of "gentle" exercise I'm becoming more and more exhausted and feel the need for more frequent b12 injections.
Thankfully my diabetes regime is working as my blood sugar levels are "under control" but I've read a report that suggests that taking Metformin and exercising is counter effective so that's a bit of a "double whammy" and as you know exercising uses up ones b12.....
I hope you find some answers on this forum and wish you well for the future.
Thanks for your reply. Just to know that others have a similar experience with exercise and need more B12 helps me feel like I'm not the lone ranger in all of this!
I am happy to hear that the diabetes is under control but not happy that you are becoming more and more exhausted! But with Metformin and exercising- you are right- it is a double whammy.
Gambit62 wrote about adenosyl supplementation. I am going to try that and hope that it helps. I will let you and others know if it does.
Take good care and thanks again for your thoughts- truly helpful to me.
a) form of B12 that is particularly used in energy release is adenosyl so may be that taking some adenosyl (sublingual tablets are relatively easy to source) rather than just relying on methyl might help
b) you may be one of those who has anti-bodies to TCII - these antibodies seem to work by fixing the B12 in your blood so it never gets to cells - so you are functionally deficient. If you load the blood with B12 so you have more TCII in the blood than you have antibodies then it starts to get through to cells again - basically this means that people with the anti-body reaction need much higher blood serum levels - often totally off the scale - or at least that's how I understand the bits of literature I have been able to find - mostly research done in the 70s
c) could be something else going on - eg thyroid- as there are strong links between B12 deficiency and thyroid problems. Depleted folate is another possibility
I'm sure that b) affects me - if I have a day with a lot of exercise in it then my B12 levels can really drop. Once made the mistake of thinking that I would be okay going to a bowls match without some B12, not having had any since the morning - big mistake - problems with mild psychosis hit me before the end of the match (couldn't filter out sounds at all so like everyone was shouting at me). My balance had totally gone by the end of the match as well. Took me 30 minutes to take my shoes off and in the end I had to leave before the end of tea afterwards - it felt so great to get out into the quiet of a country lane and I just managed to make it home and up the stairs into bed - have some B12 in the draw next to the bed - if I'd left it any later I'd have needed someone to push me up the stairs or I'd have needed to sleep on the sofa. I refer to it as my B12 hypo (analogy to diabetes).
Thanks for your illuminating story on exercise & B12, and for all your helpful information! I just ordered some adenosyl sublingual drops which should arrive any day now. Good to hear that they (hopefully) will help with the exercise bit. I'll keep you posted on its efficacy.
I hope I don't have that antibody but will run this info by my doctor who is knowledgeable and open minded about B12, for which I am truly grateful.
I have had thyroid checked- it's fine and also my folate level is good plus I make sure to supplement with folate and methylfolate daily.
From your story and others who replied to my post, it seems that exercise just depletes B12, end of story. Which is really unfortunate!
I appreciate all of your ideas. I feel very much supported and now have some new useful information!
1) The blood spots are a symptom of the relative iron deficiency which occurs when b12 levels are low . B12 helps to form blood cells so if levels are low , there will be slow cell formation , which will cause an iron deficiency . Spa tone iron sachets are very good , especially the one with apple . Blackstrap molasses contains iron . Take a spoon full every morning - you might have to put it in water as it`s very thick and hard to swallow . Make sure you are eating enough folates in your diet ( raw cabbage and kale , almonds , walnuts , watercress )
2) You are likely to have a low circulating iron level which will make you very tired . Over exercising with an iron deficiency can be unsafe so don`t push yourself if it`s making you fall asleep .
3) If you are using hydroxycobalamin , it is not active and so you may well need the active form of b12 , methylcobalamin , which is not available on the NHS and was reserved for the private sector . You can get methylcobalamin spray ( B12 Boost by Better You ) and other brands . Holland and Barrett sell it . Jarrow sell methylcobalamin sublingual lozengers .
Iron deficiency anaemia is totally different to the anaemia from B12 deficiency. The first causes small blood cells, the second causes large blood cells. One does not cause the other. However, absorption problems can cause both iron and B12 deficiency. Rust contains more iron than blackstrap molasses and is better for you.
Why do you keep saying that hydroxocobalamin is no good? The overwhelmingly huge majority of the population has no problem converting hydroxocobalamin cobalamin to the two active forms (yes, two, not just methylcobalamin). And hydroxocobalamin is the natural form that is found in food.
Hmm, there seems to be a miscommunication. I've never said hydroxocobalamin is no good. In any of my posts! I've had no experience with it. Never used it.
I'm in the U.S. where Cyano is used by most doctors. I tried Cyanocobalaminfor a year with no relief at all in my symptoms. In fact, they were getting worse. It was only when I switched to methyl did my symptoms abate.
It seems only logical that if someone is SI any form of B12 daily and still experiences deficiency symptoms that they might experiment with other forms.
What was weird, notification of the post showed up in my email. The other notifications I received by email were all meant for me, so of course I thought the same of yours.
I suppose since we can't post by reference number or some such thing, we could all use each other's site name, to be clear.
Thanks for letting me know how to I.d.the ones meant for me.
It can get a mite confusing, especially if you're used to other forum software.
I've realised why you got a notification. It's because you are the thread originator, so you get notifications of all posts to the thread. Everybody else just gets notifications of replies to their posts.
I do have an iron deficiency or did, I've been taking iron supplements for about 6 months and when last checked, my iron levels were slowly increasing. Or maybe it was ferritin levels. I don't have the ranges on hand but it was 30 when I felt the worst and then about 2 months later it was 34, and the difference in even such a small number was amazing. I expect it will be higher now. My doc wants it to be around 50. I plan to get the levels checked again soon. At least it's going up!
I'm in the U.S. and an injecting methyl 2 times a week. The doc said to increase it from once a week to 2x a week because of the exercise and it's doing the trick!
That was good info about low B12 causing the iron deficiency. There is no reason (post menopausal, I am not a vegetarian) otherwise for me to be low in iron and I've always been curious about why. Now I know, thanks to you. I'll try the blackstrap molasses, too. I eat lots of kale and almonds and also take a good based vitamin with folate.
I do so appreciate all of your good information. Thanks for explaining about the mystery blood spots!
I am so relieved to read this post. I have been diagnosed with a under-active thyroid last October and a B12 deficiency. I take 75mg of throxycin daily and was taking 25mg tablet for B12 daily (sorry I cannot remember the name). My doctor took me off of my B12 tablets in January as my levels were fine. I started to feel tired and whacked out recently so had another blood test and they are saying I am low on B12 again so seeing Dr next week. I am so relieved to read about blood spots as I have them on my lower arm, with hives. I put it down to steroid cream thinnnng the skin as I scratch all the time. Can you tell me if these will disappear once everything is under control, as mine can vary in shape and size and look like purple/red blotches.
Glad to hear of your relief. it turns out that another person, Twench, had these spots too. With the hives. I don't have the hives, generally with this, but there have been a couple of times where my arm itched, I scratched and then the spots appeared. Mostly, they appear without itching.
Since I am getting enough B12, , the spots have gone away.
What are your blood serum levels of B12? It's a good idea to get copies of all your tests, by the way. My serum level was 290 which is not considered low in US or UK. But I was having lots of neurological symptoms. In Japan and Germany, I believe they consider anything under 500 low. I was also iron deficient and anemic but even after my ferritin levels went up and my blood work was normal, I would still get the spots.
Not sure what my levels are, I am just learning from all of you what I must ask for. Thank you for your reply. I will certainly ask when I see Dr next week.
If you are low or even just on the low end and are having the symptoms you mentioned, you might ask gp if she/he knows why.
If you are vegan, have absorption issues b/c of gastro problems, in my case it's IBS and maybe celiac disease, or if you have been taking certain medications such as omeprazol or metformin, these could be reasons why your B12 is low. Or you might in fact have pernicious anemia. Although if you have been taking B12 tablets that you swallow rather than being sublingual, then it does not sound as if you have PA. I have not been tested but my gp highly suspects that I am and treats me accordingly.
I think those blood spots could be what doctors call petechia (pronounced pi-TEE-kee-uh), the plural is petechiae. Larger ones are called purpura. Do yours look like any of these?
Hi Tracy, thanks so much for taking the time to post that link. You are so kind to do that!
Yes, this is what mine looked like. I don't get them anymore now that I am getting sufficient B12. And/or because my ferritin levels are up at this point.
That is a good question about the relationship between B12 deficiency and low platelets. I just looked at my past CBC's (Complete Blood Counts) and my platelets were fine even though some other things were off.
My RDWs were high and both my hemoglobin and MCHC were low. My iron is now in the 70's and so my hemoglobin is fine now as is the MCHC but the RDW's are still high. I don't know what it all means except very generally since I am not a medical person, but I am going to look up RDW and see what a high count means. Just to refresh my memory.
Thanks again for taking the time to post the pictures!
You are very welcome. Since you live in the US, how did you ever find a doctor that would prescribe methylcobalamin (all mine know about is cyano) and find one that supports more than a once monthly injection? Or are you seeing a naturopath?
I did see a naturopath for a while but all she was interested in was hormones and selling supplements. Didn't do much noticeable good so I stopped going since was quite expensive. I've continued to take probiotics and a few supplements on my own (magnesium, spatone, B complex). I have to buy cyano from Canada as my Kaiser HMO doc won't prescribe it more than once monthly. I know I need it more often than that as I get orthostatic problems fairly quickly if I'm off it more than a week. Sublinguals don't seem to work much either.
I belong to Kaiser, too and my gp would not give me more than a once a month injection. It was Cyano which did not work for me at all! After a year I still had all my symptoms which were worsening.
So yes, I went to a naturopath who is knowledgeable and generous with the b12. She prescribes it and my husband does the shots. It was expensive to see her initially but now I just email her with questions and do an office visit twice yearly. It's an expense but otherwise I can't even imagine the state I would be in!
Tracy, also meant to say I was not happy to hear of your experience with the naturopath you went to. How frustrating!
If I can help in any way, like asking my naturopath if she can refer you to a like minded colleague of hers who might be of more help to you, I'll be glad to do it. That's why I was wondering where you live.
Hi ndodge, I live in San Francisco. I'm a member of the PA/B12D FB group and know of others in this area who are in need of a doctor who can prescribe frequent B12 shots. I'd really appreciate it if you could refer me to someone out here.
My Kaiser GP prescribed daily cyano shots for me in September. She's a DO and takes a more holistic approach than conventional MDs. I think she didn't like the idea of me buying it over the internet. But I haven't been doing as well as I'd like on cyano and that's all she will prescribe. My autonomic symptoms continued to gradually worsen, so I recently bought hydroxy from overseas. I'm 2 weeks into injecting hydroxy on alternate days with cyano and I think it may be helping. Nerves regenerate very slowly so it's hard to know for sure that healing is taking place. Time will tell.
It could be I have something else causing my autonomic symptoms (orthostatic hypotension, blood pools in feet when I stand and I get palpitations, pain walking, dizzyness, blurry vision, etc.). Last summer I was diagnosed with pure autonomic failure by a specialist at the Stanford Autonomic Disorders Program. I asked him if B12 deficiency was the cause, he said no. But in my heart I believe B12D was the cause and am trying heal myself after this terrible ordeal.
I will call my naturopath on Monday and see if she knows of someone in SF who can help you and your friends out.
In the meantime, you might want to try supplementing with methylfolate. -400-800mcgs a day. Especially if you are getting injections often.You can buy these as sublingual lozenges at any health food/vitamin place.
The reason is, and I learned this from fbirder on this forum, is that if your body has a hard time methylating the B12 or to put it another way, if you need a methylated form, then fbirder says that the methylfolate will supply that methylation function. It's a thought.
It would probably be more cost effective for you that way. If it works for you. I didn't learn about that until I was already doing the methylcobalamin as prescribed by my naturopath.
I will get back to you as soon as I can get in touch with my NP. It might take a few days.
Hang in there, I am so hoping that some kind of methylation whether it be methylfolate or methylcobalamin will help you to feel better and be all fixed!
I'm a member of the PA/B12D Facebook group and have been following their guidelines. They recommend 5g folate when injecting B12 frequently. I've tried both folic acid and methyl folate and have not been able to tell much difference. I also supplement iron and have it checked every few months, and take a B complex.
I just emailed my naturopath and will write you to let you know what she says. Let's keep our fingers crossed that she can get the name of someone for you!
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