Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Anemia symptoms with high hemoglobin

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by tolo, Aug 16, 2015.

  1. tolo

    tolo

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    Since I was a kid I have had symptoms that I guess resemble anemia.
    Pale skin with dark circles, fatigue, lightheadedness when standing up, shortness of breath, cold hands and feet, heart often beating very strongly, lips and nails turning dark purple when cold or exercising very hard…

    I never had my ferritin levels tested because the two times I had a standard blood test my Hemoglobin levels came back high-ish, just under the upper limit of normal for a male. Doc said that excludes ferritin deficiency and or B12 deficiency.

    The thing is I don’t smoke, don’t live at high altitude and I am definitely not an athlete.
    So I don’t know why my levels are at the upper limit but I do feel as if it’s contradictory because my athletic abilities are terrible and I have many symptoms of low red blood cells count (?)

    A few months ago I started going for a jog a few times a week so see if I could get into better shape. Well I still can’t run for even half a kilometer without feeling like my heart is going to explode and my whole chest area tightening up. From just a few minutes of jogging my pulse goes to 200, my throat feels like I was at a concert screaming for hours and I feel like I can’t get enough oxygen into my body. If I keep pushing it feels like I’m going to pass out. I can walk at a normal pace for miles though.

    I seem to have a lot of red blood cells but I feel their oxygen carrying capacity should be better?

    Does anybody have any thoughts?
     
  2. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    There are lots of different steps in the process of getting oxygen to tissues. Your symptoms do sound as if you may have a problem with tissue oxygenation at times but if your haemoglobin levels are normal then anaemia is not the problem. Other possibilities include lung problems but you would need to get medical advice on that from someone who can do a physical examination.

    I know from personal experience that if one gets unfit from having a sedentary life then it is easy enough to get the problems you mention in the fourth paragraph. If you try jogging without having done it for years then you are likely to feel tight in the chest with a heart rate of about 200. I found it much easier to work back to fitness in a gym with machines - although I am not sure why.
     
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  3. Mary

    Mary Senior Member

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    @tolo - do you know what your MCV (mean corpuscular volume) number is? This is a test that should be done with all your standard blood work. If it is high (even if within the normal range), it can indicate possible macrocytic anemia, often related to B12 and/or folate (not folic acid, which is synthetic) deficiency.

    My MCV was near the top of the normal range several years ago and my doctor told me this indicated a particular problem. I did some research and discovered the link with B12 and folate. I'd already been taking lots of B12, and started taking methylfolate and within a couple of days my energy markedly increased. This also increased my need for potassium and within a couple of days after that I had to greatly increase my potassium intake. I can't advise you on taking potassium but urge you to do some reading on this issue, if your MCV number is high, even if within the "normal" range: http://forums.phoenixrising.me/index.php?threads/active-b12-protocol-basics.10138/

    The normal MCV range on my test was 80 - 100 and my level was 96 - 99 for several years, and I was helped a great deal by adding in methylfolate, together with B12. Folate alone can mask a B12 deficiency so it is not recommended to take folate without B12.

    And all the while my hemoglobin numbers were fine. I believe your doctor is incorrect when he or she says that normal hemoglobin levels rule out a B12 deficiency - for that you need to check your MCV.
     
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  4. minkeygirl

    minkeygirl But I Look So Good.

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    Seriously? Please see the IOM definition of SEID. System Exertion Intolerance Disease. This is vastly different from a well person getting their butts off the couch after doing nothing for awhile. There is zero comparison.

    • Profound fatigue lasting at least six months;
    • Total exhaustion after even minor physical or mental exertion that patients sometimes describe as a "crash" and is known medically as post-exertional malaise;
    • Unrefreshing sleep;
    • Cognitive impairment (aka "brain fog") or a worsening of symptoms upon standing.
     
    Last edited: Aug 16, 2015
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  5. alex3619

    alex3619 Senior Member

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    There are lots of possible reasons for these issues. They have to be sorted through, one by one. Glycogen storage diseases for example. Autonomic dysfunction could be responsible. There is no substitute to having appropriate testing done, and along the way lots of things can be ruled out. During that process you might find the problem.

    One thing you should do is get iron studies done. You mentioned ferritin ... its an indicator of iron status, though not very reliable. There are some rare forms of haemochromatosis that are very hard to detect, for example, and might look like this. This is the kind of thing that can be ruled out with proper medical testing.

    A diagnosis of ME is unlikely to be made. Too many issues are not present. However some patients in the milder stages might not be distinguishable from your position. Its unlikely but cannot be ruled out. Walking for miles in combination with a lack of cognitive symptoms are the issue here. You would also need to have issues with sleep, though the range of such issues vary.

    Its unlikely to be regular deconditioning due to apparent circulation issues.

    I also know of someone who had these kinds of symptoms who had chronic carbon monoxide poisoning. This can be detected in the blood or the environment. Bad ventilation with a gas stove, or a problem with a car venting exhaust are two possibilities.

    So my advice is to get further professional medical advice and start investigating likely causes. If one doctor is not helping, find another.
     
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  6. alex3619

    alex3619 Senior Member

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    PS I recall one lady who had her heart reversed. The circulation issues were similar. This kind of thing is easy to see with many scans.
     
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  7. tolo

    tolo

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    @Jonathan Edwards Yes, I'm trying to rule things out before going forward and all of the types of anemia seem to go hand in hand with a low hemoglobin level, which is also what my doctor told me. The reason I waited months to make this thread was to see if it was simple deconditioning but at this point I should have made at least some progress with the exercising. Also by out of shape I was talking about being easily fatigued, not being overweight.

    @Mary I don't know my MCV because I'm not at home at the moment, but again that's why I wanted to ask this question. Micro-/macrocytic anemia I gather would affect the performance of RBCs but from all forum posts and case studies I've read on these types of anemia, I don't think I've ever seen someone report a high-ish hemoglobin level.

    On wikipedia I found "Thus, chronic obstructive pulmonary disease (COPD), in which red cells are rapidly produced in response to low oxygen levels in the blood, often produces mild macrocytosis". So someone with poor lung function could be producing RBCs too fast and thus they don't work as well as they should?

    @minkeygirl I don't think I'm there yet to be honest but from reading stories on here I seem to nod my head in agreement a lot and I feel I may be going downhill a bit too fast for normal ageing. I'm 24 but at times I feel 30 years older. Regarding cognitive issues, they're definitely there. Short term memory problems, "brain fog) and concentration issues have been going on for years, although not nearly as severe as some people on here. Basically I feel dumber/slower today than I did in high school. But again I have no problem walking or doing chores day to day, only when I have to walk up a steep hill or a large flight of stairs am I reminded that I'm "out of shape".

    @alex3619 Wow. You just gave me a lot to think about.
    A year ago I went to my GP because of the symptoms in my OP basically. They ran some tests, including an EKG and said everything looked fine; my creatinine was a little bit high. I go back 6 months later because I'm still not feeling great. They run an EKG but this time I'm being sent to the university hospital because something on the EKG didn't look right but they weren't sure if the machine was malfunctioning or something was wrong with me so they want to redo the test.

    After about 8 hours in the hospital and an EKG, blood test for thrombosis and a chest X-ray, they say nothing looks out of the ordinary. The doc wants me to do a stress test and an echocardiogram to be sure. I never got to do the stress test because I graduated and moved while on the wait list and forgot about it. And as this all happened so fast I didn't remember to ask questions or get any results printed etc...

    The echocardiogram was "fine" but the technician had to call in her supervisor because she had problems navigating around my heart. Apparently due to childhood scoliosis my whole chest cavity is a bit malformed, which means my heart is shifted towards the right side instead of the left. They thought it was weird but that it happens sometimes and shouldn't cause problems. But I've been reading a bit today and maybe I have a milder pseudo form of some these congenital complications, because they seem to be much more serious and presenting early.

    On the other hand I've always had lower stamina than I probably should have. Through middle and high school I was doing sports every day and no one was faster in short bursts or could jump higher etc but almost everyone would outrun me on the longer distances.

    Dextrocardia e.g. has the symptoms: rapid breathing, cyanosis, fatigue, difficulty breathing.
    All of these I get at from time to time; when I'm really cold (shivering, rapid breathing and blue lips) or when exercising (shortness of breath, extreme fatigue).

    There may be something there?
     
  8. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Yes, you can rule out anaemia because anaemia is just the technical term for a low hemoglobin - that's what it means. Like anyone else it is conceivable that your B12 is low but it is is it is NOT causing problems through anaemia because you are not anaemic. It would have to be causing problems in some other way which does not really help with the specific symptoms you are bothered with.

    I was not implying that you are overweight. I have been very unfit at times - the last time after surgery - without being overweight, but suffered the same symptoms you suffered when trying to jog. You may well be right that you should have got over that by now.

    In COPD red cell levels can rise but not 'rapidly'. The cells produced are quite normal. Large red cels occur if there is a sudden increase in oxygen demand - like going to high altitude but I think that is a red herring for you.

    What strikes me as most likely to be relevant here is your scoliosis. Scoliosis can have a major impact on lung function and associated cardiac function. That would certainly be a possible explanation for all your problems. As Alex says, from what you say so far there does not seem to be anything specific to suggest ME/CFS/SEID in your case.

    If you were in the middle of investigations including a stress test I would strongly suggest re-connecting with your local hospital and finishing the investigations. Your heart is likely to be shifted if you have a scoliosis but dextrocardia would be about a hundred times less likely and should have been easy for the radiologist to see. In fact if you have had an EKG I do not see how dextrocardia could be missed because the leads have to be put on your body the other way around to get sensible readings. There is no way that the first EKG could have been done without noticing. In dextrocardia the heart is swiveled round to face the opposite way, not just shifted to the right as it is with a scoliosis. The definitive test for cardiac structural abnormality would be the echocardiogram, whcih shows all the chambers and flow patterns. That would certainly be important to check.
     
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  9. barbc56

    barbc56 Senior Member

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    @tolo

    I have restless legs syndrome and when my RLS symptoms became much worse my neurologist tested my ferritin and CBC. My ferritin levels were extremly low but normal CBC. He referred me to a hematologist and I ended up getting an iron infusion. Iron supplements were not raising the ferritin, I couldn't tolerate the oral supplements nor was the iron supplement raising my ferritin levels. This might have been because of absorption issues as I have IBS.

    Since the infusion which was over four years ago, my ferritin levels have been normal. I was also able to cut down medication for the RLS from every night to maybe, at the most, once or twice a month. I do have to be careful about my caffeine intake after four in the afternoon.

    I'm not sure how all this fits together, how common my case is, nor if it pertains to you.

    Good luck.

    Barb.

    ETA Somehow I missed that your hemocrit is high.
     
    Last edited: Aug 17, 2015
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  10. Mij

    Mij Senior Member

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    I would ask to have your ferritin and B12 levels tested just to rule that out.. I don't know what your doctor would consider 'normal'. I would not go by reference ranges either, ferritin below 40 is not good, neither is B12 below 400.

    I always request my lab reports sent to my home because in the past my doctor didn't feel that a ferritin level below 20 was concerning. I couldn't walk without being out of breath and dizzy when it got below 20. My B12 was below 400 for years but she was not concerned about that either. When I raised both with coenzymated B complexand + extra methyl B12- I FELT BETTER.

    so whatever to what she says.
     
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  11. tolo

    tolo

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    @Mij @barbc56 I get what you're saying. I did just now find out about non anemic iron deficiency, which I gather is having low iron but normal hemoglobin levels, and it does seem to fit my symptoms. What bugs me is the studies showed women who had low iron and Hb ">12 g/dl" which I guess could just mean slightly over the lower limit - mine on the other hand are in the 17-18 g/dl range. It does seem like a stretch for me to be low in iron but still be able to produce red blood cells out the wazoo. But it might be enough to warrant an iron/ferritin check.

    And I still haven't read up on red blood cell malfunction. Maybe I have a lot of them but they aren't delivering oxygen well, or something, if that's even a possibility. I need to look into that.

    @Jonathan Edwards Thank you for taking the time to reply. I'm right there with you in thinking the scoliosis might be the precipitating factor here, causing a malformed chest cavity and thus impairing lung and/or heart function.

    It would also explain why the nurse and my GP freaked out and sent me to the ER to do another EKG. The nurse put the electrodes where they always go but since my heart is shifted to the right it may have given a bad read and that's why they thought the machine was broken.

    I just found it interesting seeing so many of my symptoms show up in people with heart defects. I always thought the lungs would be the major player in my case but maybe my heart is positioned in a way that impairs its function.

    Regarding the previous investigation. After the echocardiogram was done they basically ruled out any life threatening condition and the stress test was scheduled much later on. I should request to have one done because it seriously feels like my heart will explode if I push myself when exercising. I think a pulmonary function test would also be reasonable to request, just to see what level my lungs are working at (I'm guessing a terrible one). While I'm there I might as well ask for ferritin and B12 levels just to cross those off my list, now that I found out about non anemic iron deficiency.

    If all these turn out fine then there has to be an issue with the red blood cell delivery of oxygen to tissue.

    @alex3619 That lady you were talking about, do you remember if she had a heart positioned to the right or if it was a full on dextrocardia? The latter for sure can cause serious issues but I need to research how much impact the positioning of the heart plays if the structure of it is fine.
     
  12. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    @tolo If your haemogloin is up at 17-18 then it would seem to me that you need a good explanation. Polycythaemia vera is possible but I suspect unlikely. I think in the context of your feeling unwell it should be excluded. Otherwise the likely issue is secondary polycythaemia from a lung or possibly cardiac cause. In fact the high haemoglobin/ haematocrit might be contributing to your symptoms through high viscosity - paradoxically reducing peripheral tissue perfusion. My thought would be to seek advice from a chest physician. You might also want to consult someone with special expertise in scoliosis. In the UK adolescent scoliosis is dealt with mostly by a single national centre, which is first class. I suspect wherever you are specialist centres will be few, but it is a condition for which management has been transformed over the last few decades.
     
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  13. alex3619

    alex3619 Senior Member

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    Her heart was fully reversed. Beyond that I do not know, this was from thirty years ago, and I never asked many questions. She lived in the house next door.
     
  14. aaron_c

    aaron_c Senior Member

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    Do you remember what happened when you took iron supplements?
     

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