PA: tingle and out of breath?

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After running to doctors for quite a while for tingling lower leg and arm I was finally diagnosed with a mild pernicious anaemia. I've been taking iron for a while already as ferritin was low, and started feeling better relatively quickly, and ferritin started to fill up again. I also started to take B12 tablets, but they didn't really do anything After this diagnosis I started taking 1ml b12 injections, 3x per week, 10 times now.

Well.. the tingling got worse I would say and spread out more

In the last blood test the MCV is still near the upper edge of normal, MCH, MCHC have moved to the middle of normal. RWD was initially high, but has gone down again. When that test was originally done I had an asthma attack, which might explain the high RWD.

Right, I feel good, only the tingle got worse. I don't know if it's related to the anaemia, or if I had such anaemia in the first place. If it was caused by it then I understand that the tingle might not vanish quickly? Anyone here who experienced a worsening upon starting a therapy? The doctor I'm seeing suggested only taking one injection per month now.

Here's the strange bit: I was very out of breath the last few days. When I decided to do an injection again after a nearly 2 week break the out of breath feeling was gone in around 4 hours. That did happen once before, but I cannot imagine such a quick effect. Or is it possible?

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12 Replies

  • Posted

    Hi yirara. Do you know your folate levels? Folate needs to be in high end of normal range for your b12 to work at its best. Low folate will prevent the b12 to metabolise to your cells. The extra tingling will be your nerves wakening up and repairing.
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    • Posted

      No I don't know it. The clinic I'm visiting now charges very high rates for copies of results, and I still have one blood test pending: thyroid antibodies and connective tissue antibodies, plus another red bloodcell test. I just don't really manage to get to that clinic to get the tests done. I do know it was tested, and I do know serum B12 (yes, I know, it's not the best test to do) was around 1200 in that last test, even though I'd stopped taking the injections about a week prior to it.

      Are you sure the extra tingling might be repairing? I still don't know if it's related to B12 deficiency or something else. The tingling is not really stronger (and as before mostly present at night/morning), but spread out much more. Instead of just on those two spots it's spread out up to up my legs and towards my buttocks. But this I only feel at night. During daytime it's mostly in those two original spots or is pretty much gone.

      I'll check out folate once I had the other tests done. What about B12 shots having such an apparent effect on breathing? Surely it would not immediately lead to the production of more red bloodcells, and the number of red bloodcells seem to be ok in my case. They are only too big still. I don't find any real explanation online how this, and initially high haemoglobin could cause shortness of breath

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  • Posted

    sorry to hear you've been having these debilitating symptoms in resposne to low b12 levels. at least you're on the roas to recovery with treatment.

    yes, it's possible to experience a temporary exacerbation of symptoms like ''tingling'' etc, initially post treatment. this will dissipate as the b12 starts to reverse any damage done. it's just the result of the nerve cells being stimulated into action. also, it's possible to have a quick positive response, like you've had in respect of your breathing difficulties.

    apart from it's core symptoms, b12 def.,can have a rather subjective effect on the person and the response can be equally subjective. make sure your Folate levels have been checked. if normal or low you need to take Folate as well as b12 as they are mutually interdependent. if Folate is low b12 can't be metabolized preoperly. also, ensure u take a good quality mineral & vitamin B (complex) supplement. all the B's work synergistically & excess of one can throw the others out of zinc.

    all good wishes

    Caitlin.

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  • Posted

    the breathing difficulties you've been experiencing are not due to ''iron deficiency anemia'' i.e. to the lack of heamoglobin rich red cells in you blood stream . it's due to what is called ''megaloblastic anemia''.

    In the case of megaloblastic anemia, this disorder is caused by incomplete formation of the red blood cell resulting in large numbers of immature and incompletely developed cells. These red blood cells do not function like healthy red blood cells and crowd out the healthy cells, causing anemia. Since these cells are underdeveloped, and they also have a short life expectancy.

    in respect of the ''delayed'' tingling. this is due to a the healing & re-awakening of the NERVE cells. these cells take longer to heal than say ordinary cells i.e. simple 'epitehial' cells (cut on your finger). this heals by 'first or primary' intention. it's all over with and healed in a 4-5 days. nerve cells are diffferent, more complex, more succeptible to injury and takes longer to correct, as the whole ''messinging'' system of the body is thrown out of kilter. those ''tingling'' symptoms are a positive sign that healing and rearranging is hapening in your body.

    do check the result of your CBC as Folate is usually done automatically. and as heather says it needs to be at the higher, rather than the lower end of normal.

    all good wishes

    Caitlin

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    • Posted

      Thanks a lot Caitlin,

      I put folate on my shopping list. Any recommended dosage?

      I also wonder if my B12 treatment is sufficient. I now had 11x 1000my methylcobalamin injections, usually 3x per week apart from two times where I paused for a week (at the end of which the breathlessness showed up!). My doctor thinks I did enough and I should now do 1 injection once a month.

      With regards to breathlessness: I know the lab ranges of MCV, and that they vary from lab to lab. I also know that being within lab range doesn't mean one doesn't have any problems.I know it's individual, but I do wonder what value of MCV is really considered high to get problems such as breathlessness.

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    • Posted

      hi yirara.

      re: folate, 400 mgs is the RDA. for therapeutic purposes as in your case 400 mgs three time a day is recommended. with it's addition you may well find a marked reduction in symptoms.

      re: b12 dosage. you're on a higher dose than is genrally prescribed in the UK which is good. however, there's no side effects with b12, you just eliminate what you don't absorb. interestingly i had to go to nearly 2000 before i felt a response and it took 3 months. but it was the addition of the folate that made a massive difference.

      hope this is the case for u.

      Caitlin

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    • Posted

      Thanks a lot caitlin. Yes, the dose is higher because I'm doing this myself. But the doctor I'm seeing now approved while the first one only gave me some tablets, which in my opinion didn't do anything at all. I followed Dutch guidelines here (advantage of living in different countries I guess. More guidelines to chose from).

      Phew.. nearly 2000.. how often per week/month if I may ask? I can only get 500my doses here, thus that would be a lot of injections smile

      I've put folate on my shopping list. Hope I can find something with a high dose.

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    • Posted

      yes, i took 500 subcutaneous (SC) on alternate days for 15 lots as a loading dose and then as i felt i needed them i.e. once a month. SC route allows longer time for the b12 to be absorbed as it's into the fatty tissue. apparently more gets absorbed this way. my Envirnomental medical practitioner advises that ppl with ME/CFS need to keep their levels at a minimum of 2000 levels. i've only had positive response from that level. and my GP's fine with it.

      with folate, you're best having 400 mgs three times a day until your levels are normal. you should be able to get the Folate from the GP.

      best wishes

      Caitlin.

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    • Posted

      Thanks a lot Caitlin,

      "go to 2000". Sorry I read take 2000 per shot. Oops! But yes, I was still substantially lower on the last blood test. So I guess I'll go  on.

      I'm using i.m. as it's easier for me for some reason.

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    • Posted

      hi Yirara. NO not a 2000 ml shot. i started with taking a loading dose 500 mls SC (0. 5 of a ml) on alternate days i.e. 3 times a week. i now take a shot (SC) when i feel 'breakthrough' symptoms returning - possibly once a month. the addition of the Folate made a great difference for me. it was like a light was switched on. however, you need to know your Folate levels to properly supplement. sometimes, a high level of Folate can cause a low b12 level. so it's important to know your levels & monitor them.

      i'm coming to the conclusion that each person has an individual optimum b12 response level. this will be lower for some than others. for me it was a high level as suddenly i felt my brain and energy pathways etc waking up. it does take time to renew the body's stores & to repair any damage done.

      Caitlin

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  • Posted

    Folic acid treatment is 5mg per day for deficiency. The 400mcg is a standard dose for pregnant women. I take 12 x 400mcg=4.8mg
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  • Posted

    Well, that's at least something... I'm getting a decent lung challenge test. Well.. I was supposed to get it today but the clinic refused when they learned I'm mildy allergic to ventolin. Now they still do it, but only when their emergency doctor is around. That at least should hopefully answer the question if I'm having asthma or not.
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