I’m two months into injections. Had weekly shots the first month and have had shots three times a week for the past month. I feel so awful that I can barely function. I’m short of breath,weak, dizzy have chronic PVCs and have chills most of the time. These are the same symptoms I’ve had for the last year. They got better for a period of time and every now and then disappear for a day or a couple of hours with no correlation to injections or food, etc.
I had labs done three weeks ago that showed everything was within range, including my folate and potassium. The only exception to this was my MPV was slightly high and my white blood cell count was on the bottom end of normal. As a matter of fact, my white blood cell count has been dropping steadily for the past few years and even more so since I started injections. My red blood cell count seems OK although low normal also. My HGB went up tp13.3 which is much improved. My dr said this week to give things another month and then if my white count doesn’t go up she will refer me to a hematologist.
My thyroid counts are all normal. My vitamin D was 31 back in August but I’ve been on high doses since and haven’t been retested for that yet. My ferritin is 47 and I’ve been on an iron supplement also since that was tested.
My hands are usually ice cold and turn purple even inside. I realize that injections can take a while to treat symptoms, but how am I still short of breath and cold when these aren’t neurological symptoms? Shouldn’t those have been improved by now? I feel like I have the flu 24 x7.
I am feeling very discouraged and worried. I feel like I’m running a marathon and the finish line keeps moving off into the distance.
Can anyone suggest additional tests I might need or thoughts on these particular symptoms? I’m wondering if something else is going on but I can’t think of what else might need to be tested. I’m so physically and emotionally drained. 😕
Thanks for your help.
SQ
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Do you know what your b12 count was before you started injections and have you gotten your folate level checked? If you had those symptoms for a year, sounds like you were deficient for a while and it may take a while for your body to return to normal. When I started my injections, it took a good three months before I felt close to normal. I felt terrible for the first several weeks. It takes about three months to replenish your entire red blood cell supply. Feeling cold and out of breath aren't neurological symptoms but b12 deficiency inhibits proper red blood cell production. Without properly functioning red blood cells, you get the cold feeling and body has a harder time bringing oxygen to the cells which is why the fatigue sets in. If you've been going through this for a year, I definitely think you should be referred to a hematologist ASAP because it could be some other issue.
Hi there - I started B12 sublinguals nearly 15 years ago after getting very ill and knowing my grandmother had PA. My GP tested me after that but, of course, every time since it has been high. Unfortunately I have no baseline info. But I have had symptoms my entire life. The recent symptoms that are fairly new in the past year (except the PVCs which I've had for a very long time) seem to be most distressing, My 'serum folate' in August was normal as was my recent 'Folate RBC' . Thanks for the reminder about the RBC production. I appreciate your reply!
You have covered most bases that I can think of.... Only a couple of questions:
Have you had your magnesium tested? You haven't mentioned that specifically.
Hypomagnesaemia (low mag) can result in frequent PVCs.
You say "chronic" PVCs - in the UK "chronic" in modern vet and med parlance means long term, potentially for the rest of life, but I was brought up (my Dad was an ex paramedic) with it being used to just mean "very bad", often in the short term, for which the word "acute" is normally used as the current vet and med term.
I'm not trying to spilt hairs over your use of language, just trying to clarify what it means to me. Are they something you have had forever and are used to so you know they are fine or are they really bad at the moment?
I get spells where I have a fair number of ectopic beats (not related to my B12) among other arrhythmias and although I know they are benign, they can get uncomfortable.
Have you had these checked with an ambulatory (on the go) ECG as well as a resting one? Are you sure they are all PVCs (ventricular ectopics) or are any of them PACs (atrial ectopics)? When I get PACs I feel like my heart is "pulling" (someone is pulling my arm out), I feel really cold and get short of breath in an unpleasant way.
Only other thing I can think of: is your haem (heme) iron manufacturering system working? Mine's not and although I need to take iron supplements to give me a background level of iron my body has lost the ability to convert elemental iron (found in plants in your diet and supplements) to haem iron for use at a cellular level, especially to carry haemoglobin. I have to get mine from my diet by eating fish and/or red meat twice or 3 times a day. I could take enough iron supplements to be toxic to me and I'd still be short of haem iron, resulting in my feeling exhausted, cold, breathless and my hair falling out.
Are you OK for vitamin E and selenium? (These two work together). These are less common deficiencies in relation to B12 but cause "ill thrift" which says it all really!
Ah.... have just also thought.... I can have all the B12 and folate I the world but it doesn't help unless I get a methyl group with it. My body has obviously given up methylating properly. I prefer to have hydroxocobalamin injections and can then have either methylfolate (which is what I do now) or some additional oral methylcobalamin and folic acid. As your folate levels are good you and so you don't need methylfolate, you could try some methylcobalamin sublinguals. Just be aware that you might not absorb them (although you should in your mouth) or if you do and you don't need the additional methyl it will give you a headache! 🙄 But it's revolutionary if that is what you need!
Above all don't give up! It took me a couple of years to work out what was needed and I was despairing at times but I got there in the end!
It's definitely worth getting your heart checked out a bit further too. You shouldn't be getting/being that cold - I know!! I know I've got heart arrhythmias and I'm in the process of trying to get mine looked into a bit more.
I know it's expensive for you but it could well be worth getting your levels of things tested again before too long to see if you are maintaining your levels on your current regime or if some things need adjustment.
NB I know you will be desperate to get fixed but if you can try to only change one thing at a time you will have a better idea of what is working and what's not. You sound ultra sorted and organised so you are probably doing it already but a symptoms diary is often useful to keep.
Please let us know how you get on and/or if there's anything else you find that might be helpful to others in the future.
Thanks, Denise. I so appreciate your thoughtful detailed reply. You bring up some very good thoughts. My magnesium was tested in August and was 6.4 (range 4.0-6.4), so at the upper limit. I did start adding a small dose of magnesium a few times a week, but it gives me gut issues so I have to minimize the amount. It does seem to help the PVCs a bit. I've had the PVCs for decades, but they have gotten increasingly worse. I was on a holter monitor a very long time ago when they first became prominent and I was told they were benign. When I was at my sickest this past spring (pre diagnosis), I was getting 7-8 PVCs every minute. I've had many EKG's (both on the go and when in hospital continually attached) and they are seen when I have leads on but dismissed. I do have a strong family history of A-fib, but I don't think that's what it is. My heart rate is pretty slow (usu in 50's or 60's). I've never been told much more about the PVCs. It sounds like you have a similar situation. I wonder if my being cold and short of breath is from the PVCs. They are very uncomfortable and I can feel every beat, as they seem to 'thump' in my chest and startle me. I asked my previous GP to check into my heart further but she told me it as unnecessary. (Thought I was a hypochondriac from all of the symptoms over the years.) I will ask my new one to pursue it. Good luck sorting out your issue as well!
Interesting comment about the (heme) iron mfg system working. I am not sure how they test for this. My hemoglobin and ferritin are normal, although my hgb was low before I started supplementing in Sept. Curious to know more info so I can check it out. As a side note, my hair has also been falling out (lost patches and volume), but just started slowing down in the past week after two months of B12 injections, iron added.
I will definitely get my levels checked again. I am scheduled for early Dec to go back and will have a list in hand of what needs to be tested.
I definitely need to keep a diary. Although this post only talks about the more recent and most troubling symptoms, I have suffered for many decades undiagnosed with pretty much every symptoms I've ever seen published for PA. :/
Thank you again for taking the time to respond in such detail. It really means a lot.
Thank you too, very much, for your detailed reply - it makes it all worthwhile taking the time to write!
The similarity between our experiences is quite striking, isn't it! I had a holter monitor fairly recently that showed up the PACs as well as the PVCs. I don't get as many as you but I know exactly what you mean. Horrible, isn't it!
I started passing out when I was 12 and it took a dozen years of being dismissed as a hypochondriac before I finally persuaded them to give me a recorder and then they saw I had SVT! I had an ablation operation that showed things were much more complicated than they first thought and I had to have it done again a couple of days later. My cousin has had the same problem and another cousin is experiencing similar issues now. I've had AV block for decades and should have gone back for a check up after 5 years but I was fed up with the system so when I moved to a different area I mentioned it to my GP but didn't pursue it. 25+ years on and it's starting to cause me grief... But I'm back in the situation of being referred to a work-shy, arrogant, patronising cardiologist. Unfortunately for him I've "been there, done that" and one day he's going to wish he wasn't quite so rude!
I'm so sorry to hear about the SVT and your experience with the cardiologist. I understand how frustrating and demeaning it is to be dismissed by doctors. I have been written off by countless medical practitioners over many years who are overly confident that their text book checklist trumps all other input. I hope you get it sorted quickly.
I also wanted to add that I have not had my vitamin E or selenium tested that I know of. I will add those to the list! As for methyl, I have been on methyl sublinguals for 15 years. I am currently taking 6000mcg per day in addition to injections of 1000 hydroxo every other day. I did not know the methyl could cause a headache, but that is really good to know since my headache comes and goes. (Much better than it was before injections). Curious to know what other side effects others get from methyl subs.
Wow - another similarity: I need around that much - although more is working better for me at the moment.
Vit E & Se is a bit of a long-shot guess but I thought I'd mention it, although I'm not certain it will give you anything?
I seem to be short of something, probably another B vitamin, but I don't know what one (I haven't managed to get the required individual tests: it's difficult here to get any testing at the moment) and I am wary of over dosing on something less required if I take either any more multvitamins or add in a regular B-complex - although saying that, I know I feel better when I do.
I have various gut issues which means that my absorption and metabolism levels vary and fluctuate so I'm always stabbing in the dark to try to get the balance right - although the good thing is that I get more experienced over the years!
NB, while the common practice is to dismiss ectopic beats as "no problem" some more progressive cardiologists do recognise the distress they cause as a problem in itself, even if they aren't pathological, and are not so dismissive.
I know mine are being a git at the moment and keep me awake - just when I need to sleep to sort them out!
Denise, I am curious if you take your daily sublingual dosage all at once or if you spread it out during the day. I just started taking it three times a day instead of mostly in the morning. I am hoping perhaps keeping a steady supply in my system might be more effective. My body seems to use it up quickly. I also wonder about a B multivitamin but am too afraid to throw off my already rocky balance of nutrients.
Another thought to add to the amazing information you have received is have you considered another autoimmune condition alongside PA. Cold hands with purple fingers can be reynauds which can accompany several other AI conditions like schleroderma or Sjogrens syndrome etc?
Great thought, Parlay. I did have an entire autoimmune panel run this summer and it was negative for everything. Even the ANA was negative. For decades it was thought I had Sjogren's (have severe dry eye, dry mouth) but antibodies are always neg. Same for Reynaud's and scleroderma, lupus, etc. Nothing shows up in labs. (Although I did get a HIGH value for CH50 when this panel came back. Dr could not explain it). The purple in my hands showed up suddenly this past winter along with the other mentioned symptoms. I had hip surgery last Oct and I suspect that depleted whatever B12 I had left in my body. Things went downhill after that and my hands (and sometimes feet) started getting purple a lot. My feet have improved but my hands still get cold and purple, and I have constant chills (even as I sit inside typing this). Thanks so much for your reply and thoughts. I really appreciate it.
It’s the same thing as PA tho not everyone had the antibodies not even ANA. So if you have SICCA symptoms and reynauds it would be very interesting to push to see a decent rheumatologist and try and get a lip biopsy done. It would explain the fatigue the feeling crap the dry eyes and mouth the reynauds. A lot of rheumatologists are now wise to the fact that antibodies aren’t always present.
Hello Amy - I am happy to say that most of my symptoms have continued to improve with every other day self injections. My headaches are mild and infrequent as are my chills. My fatigue and shortness of breath still linger and get worse when I’m run down, stressed or catch a bug. I have periods of time ( sometimes hours, sometimes days) where they are bad and I can’t figure out why. My repeat labs in all areas continue to look good, although my MPV is still elevated. I still get chronic PVCs but they seem less intrusive than before. Because my symptoms were so severe and debilitating and my disease went untreated for so long, it seems my baseline is a bit fragile. I wish I knew how to resolve these remaining challenges. I often don’t have much energy to spare. I have not had any further cardiac testing done but will consider it if I don’t continue to see improvement. Take care, SQ
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