I’m on treatment for last 16-17 months.. with any activity or exertion I become short of breath and feel like to give up that thing, does anyone experience the same ? Will this thing ever get back to normal?
PA and short of breath: I’m on... - Pernicious Anaemi...
PA and short of breath
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Gunj_redjem
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39 Replies
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How are your iron levels?
Are you on any beta blockers? Heart meds?
No just migraine meds I think dats a beta blocker
Just caught your reply, do you suffer with headaches /migraines as well? I'm suffering with very similar symptoms as yourself and have been on propananol for several weeks, even though I my blood pressure is OK, I reckon it's all to do with B12 deficiency or I've read others saying it could be a vitamin D issue, I dread going to bed as I'm getting a headache every single night and boy are they brutal, been going on for weeks, but after 55 years on the planet I know my own body, but even now the propananol has stopped working, sorry to have jumped into your conversation, but it was just a thought, thanks.
Ya even I’m taking medicine for migraine it’s not working that much n I know it’s because of b12d ,don’t know wat to do☹️ Migraine is the worst symptom of this deficiency
How often are you getting your migraines? I'm getting one at least every single day, but normally while I'm asleep, I feel like I'm having to take a medication for something that could be resolved by treating the B12 properly, I'm at my wits end with these headaches and I'm also taking a migraine tablet when I get an attack, I dread going to bed knowing that I'll be disturbed, I'm then ending up with a tension headache during the day due to the lack of sleep, I've now resorted to going to bed in the afternoon to try and catch up with the lost sleep, what a nightmare, thanks for the advice.
How often do u inject? How long have u been on treatment for?
Yep I'm getting a Injection every 3 months, but I'm pleading my case at the doctors to go onto a 2 monthly cycle, I'm due to get my bloods done tomorrow and even though the doctor discussed this at my last appointment I rang them up to check I'm going to get a blood test done and surprise, surprise it hadn't been done, so I'm due an injection tomorrow, but I've got a feeling that the blood test won't have been booked in, I feel like I'm banging my head against a brick wall, and at the same time my condition has worsened, all because of possibly what 'cough' guidelines that the doctor follows, hmm, not holding my breath on getting the blood test done.
Ask your neuro for flunarizine for migraine that mite help
Should I get my iron checked or any other test that’s causing this?
Yes, that's my best suggestion
Yes. That's me.
I've been getting treated for 4 years. For the last couple of years I've been injecting twice weekly. I can do moderate exercise forever. I can walk for miles and miles with no problem. But if I try something very strenuous for just a minute then I get totally out of breath and have to sit down for 10 minutes to recover.
Levels of iron, folate Vitamin D are fine. TSH and T4 are fine. HbA1c is slightly high, but a lot lower than it was two years ago.
This all started about 15 years ago. It got worse and worse until, at the time of my diagnosis, I couldn't walk 50 m. After treatment it slowly improved, over about 12 months, to the current situation and hasn't changed since.
Same here after any strenuous work I need to sit as I become short of breath... 12 months later ur improvement stopped?
So it's pacing that works without variation. Interesting you can walk miles. I used to be able to but was never good at 100Mt race or running for a bus. I don't seem to be able to lift things any more . I suppose that a quick surge of energy needed. I'm glad at least you have some consistency in what you csn and can't do. Such a strange condition. I wish you a good BH
Have you had your iron and ferritin checked? It's horrid when our bodies are not working well
Sorry I've done it again. Missed the replies. And repeated what others have said😃
Yep I had a bout like that and I explained to the doctors, got my blood tests done and I was prescribed 6 weeks worth of folic acid tablets 5mg,what amazes me is how many folk are having numerous problems because I really feel that B12 deficiency is not treated seriously enough, or the requirements are set to low by various health authorities and not receiving enough injections, I'm currently in a position where I need to get a 2 monthly cycle but my request is falling on stoney ground, nightmare.
Get a copy of your blood test Results. Your dr can say all fine in range but you can still be symptomatic if at the bottom of the range. For example ferritin range is around 12-330 so if your at 13 dr says fine when really that’s very low - optimal is 80-100 for a women and 120 for men (UK measures). You can also have low ferritin before haemoglobin levels start falling and you become anemic.
Very good point! I remember about B12 ranges but don't necessarily think about it with other things. We probably need to be in the upper end of the ranges for everything to work optimally too.
As cb1963 said get folic acid checked as well you want that near the top of the range. You can feel awful if folate is low.
Folic acid prescribed by my Doctor cured the awful breathlessness for me. I'm now able to run 6km every morning.
Gunj_redjem• in reply to
DdI u have low folate ?my blood report shows Folic acid more thn needed... how often u take b12 shots?
BarryBuchy• in reply to
How much folate do you take?
Since I've been self injecting my breathlessness has gone away and so have my weak legs, but on the down side I inject every other day (when I feel off it's every day) which I hate but I live in hope that it will eventually cure my severe intestinal issues.
Hey I struggle with shortness of breath myself. There isn't a pattern to this though. It can be walking around the house can bring it on. Other days I'm fine. With exercise - I spin- I pace myself and consciously control my breath. I do find that it can really make me feel unwell if i over do it though. I can come down with flu like symptoms and be in bed for 2-3 days! As you get fitter you will be able to cope better and sometimes it a matter of changing the type of exercise you do. If I run I get VERY unwell but i can spin and walk.
For how much time have been on treatment?
About 4 years now I think. My legs aren't as sore as they used to be. No more restless legs only in the last couple of days before I'm due an injection. I sleep better now. I'm not as dizzy as I used to be. I don't get pins and needles often anymore. No more upset tummy.
Ur neurological symptoms r sorted?and y do u get flu like symptoms
Not completely but much improved. I still have memory loss, brain fog, clumsiness etc I cant explain my flu like symptoms and I did ask my doctor about them but didn't really get any response. I get really run down- I had a busy Saturday so yesterday for example I slept 11hrs 15mins and lay motionless in bed until 4.30pm feeling awful.
How often do u inject and wat are ur levels?
Initially I was every 12 weeks but it's not at every 10 weeks. Cant remember exactly but around 290 I believe when last tested in March.
Your levels r so low u need to inject often
R u working?
Yes I'm working full time. I can manage ok on my current injections- start to feel a bit rubbish about 1 week before I'm due. I know eventually as I get less and less time feeling ok between injections I may need to consider self injecting.
Hi.
Maybe I missed it, but how often are you getting injections? I suffered from daily migraines to the point that I stopped working, stopped functioning, and slept most of the time just to escape the pain. That lasted for almost 2 years. I also had shortness of breath and dizziness when I exerted myself - at all. Only after I started getting injections twice monthly did the headaches start to diminish in intensity and frequency, but they were still life-altering. Now that I'm self-injecting 500 mcg every second or third day, the headaches are infrequent and mild -- and it's even possible they are different headaches altogether (I have allergies and sinus issues). The breathlessness/weakness/dizziness still occurs, but it's infrequent and less intense, and generally follows overexertion.
I sound like a broken record, but the answer, I believe, is getting sufficient B12 which almost always means self-injecting. I resisted SI for several years because I didn't think I could do it, and in truth, I can only do it by using a tiny needle (26G x 1/2" insulin needle) and injecting into my belly. I lost a lot of time and life to insufficient treatment; I wish I had found the courage to self-inject much sooner.
I wish you relief and good health.
Jayne
I’m taking migraine meds also apart from twice weekly injections... any suggestions for migraine?
I was given Propranalol and Nortriptyline (later changed to Amitriptyline) but the migraines continued to be a problem until I finally started self-injecting. I believe the Nortriptyline and the Amitriptyline greatly exacerbated the deficiency symptoms and did nothing for the headaches while the Propranalol helped, but was limited in its efficacy without sufficient B12. For me, sufficient B12 via injections AND liquid B12 seems to be the solution to the worst of the suffering, regardless of which symptom I'm addressing. For example, like so many others I suffered from "burning feet". A biopsy led the dermatologist to diagnose an unnamed auto-immune condition similar to psoriasis. She gave me compounded ointments which helped, but it wasn't until I upped the quantity of B12 that the ointment completely cleared up the problem. (Like with the headaches, I still have flare-ups, but they can be treated much more successfully now.)
It's a blessing and a tragedy that the answer to the more extreme suffering seems to be (for me, at least) as simple as getting sufficient B12.
Jayne (d-g-s)
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