the sighs

[jillc39]

I have noticed that I now have 'the sighs' and wondered how they can be linked to b12 deficiency... just asking.

[wedgewood]

If you have PA, your red blood cells are not maturing , and cannot get through to where they should go, because immature red blood cells are too large . You are therefore not getting enough oxygen , and take in extra breaths to try to compensate ---' the sighs'

[JGBH in reply to wedgewood]

Hi wedgewood,

If red blood cells are not maturing, therefore get destroyed fairly rapidly, does it mean there is an overproduction of red blood cells to compensate for too many red blood cells not being able to take up and carry haemoglobin? Does anyone know? So that would be the explanation for the "sighs"... Thank you.

[Frodo in reply to JGBH]

I'd also like to know the answer to this as a young relative had a high red blood cell count - was told by one GP it was polycythemia, but the next GP disagreed.

In the meantime, I found out about B12 deficiency and discovered their B12 was in the grey area, and folate very low. It's been so worrying and impossible to get proper diagnosis and treatment of symptoms.

[JGBH in reply to Frodo]

Hi Frodo,

Indeed it is worrying not knowing the cause of an overproduction of red blood cells. If it is polycythemia then this situation cannot be allowed to develop further and should be investigated thoroughly.

May I suggest your young relative, or her/his parents, demand to be referred to an haematologist and if necessary ask for a second opinion. It may be more useful to do so in writing to GP (write to GP who initially said it was polycythemia, if not to any GP) as letters from patients must be kept with patients' records, and then GPs need to refer as requested by patients. However I do question the responsibility of 1st GP who said it was polycythemia and did not refer your relative to a specialist...

I intend to press my GP to explain what an overproduction of RBCs could entail, although she poo poohed it dismissively by stating it was what to expect from someone with my medical problems! Oh so scientific and a "could not care less attitude". Clearly this needs to be sorted.

Too often B12, folate levels are in the grey area (low side of accepted ranges) of ranges and GPs refuse to accept the guidelines from NICE, BHS, the BNF, etc. Perhaps by writing a letter to your GP listing all the symptoms you are getting and asking to be put on a loading programme of B12 injections ( over 2 weeks, as per NICE guidelines) in order to see the difference it would make you might get somewhere. However GPs are hellbent in not helping with B12 deficiency and refuse to accept the guidelines recommendations ... they'd rather put a patient on antidepressant, their surgery makes more money out of that than prescribing B12 injections... sorry to say.

I do hope you can find a way forward. Do ask advice on this forum since there are many wonderful people who know a great deal more than me and who would advise you as how to proceed.

Good luck.

[Frodo in reply to JGBH]

Thanks JGBH. Good advice.

My own B12 deficiency is being treated - I've been lucky so far - it's the young relative who was refused B12 treatment - but has shown some improvement taking sublinguals daily.

Re the first GP - yes, they were out of order in giving the diagnosis of polycythemia and not referring to a haematologist. They said it was something athletes get training at high altitudes and told me not to google it?? When I looked into it, I obviously became more clued up (and very concerned). I wouldn't have been too worried except for the fact that the relative also had some symptoms of polycythemia, which is what had led to the blood tests in the first place (heat intolerance/severe itching, headaches, malaise, and frequent spontaneous nose bleeds.)

We are now with a different GP practice and that particular GP has moved away in any case. It was pursued with the new GPs, they seemed at first to think it was a case of health anxiety and didn't understand why the first GP had made the diagnosis. They explained the symptoms away as trivial. Eventually one of the GPs explained there would be other markers in the blood if it was actually polycythemia. I think also the B12 level tends to be very high (although not always) which it certainly wasn't.

I think it's something to keep an eye on in future as the relative is still symptomatic, although the symptoms could be down to other things.

[fbirder in reply to Frodo]

Frodo If a relative had a high blood cell count then they had polycythemia - because that means 'lots of red cells). The doctors may have disagreed over the possible seriousness of it and the possible causes (of which there are many).

[Frodo in reply to fbirder]

Thanks fbirder . So great to have this input from someone who knows what they're talking about.

Very confused now about what the doctors said. The 'second opinion' GPs said it wasn't polycythemia - but my relative did have a high red blood cell count (this was in his mid teens) so that means they were lying?

Assume they meant - not a serious life threatening version of it which would have had the other markers they mentioned? No further tests were done so how could they know for sure? It's a confusing condition to try and find out about.

So they weren't interested in causes, didn't think the symptoms were serious, and explained them away as nose picking and a heat rash. Meanwhile my relative was having prolific spontaneous nosebleeds at school and in the night and still does, though less so than before, still gets headaches, and has such a severe reaction to heat his life is pretty limited by it. They did test again but now he is in the adult category and they said he was within normal range for an adult male, however he's very thin and lightweight for his age.

Sorry to go on about this in someone else's thread - but it's been such a long running concern.

[fbirder in reply to JGBH]

In megaloblastc anaemia there tend to be too few, too large RBCs. Each cell has the normal concentration of haemoglobin but, as there are fewer cells, there is less haemoglobin overall.

The extra-large cells have a normal lifespan.

The body can't compensate for not enough RBCs because it is making them as fast as it can. But the impaired rate of DNA production is the bottleneck.

[JGBH in reply to fbirder]

Thank you for your clear explanation fbirder. So this is not my case as I have an over production of RBCs. Will need to insist again GP explains why this is so as clearly her answer "that's what to be expected with you medical issues"... is not exactly scientific nor reassuring as I obviously need to understand what is happening in order not to let further health problems creep in on me.

[fbirder in reply to JGBH]

If you have polycythemia then the doctor needs to explain the cause. It can have many causes. Some are totally benign (some people have a gene that makes them produce lots of RBCs with no bad effects). Some aren't.

However, you may have reticulocytosis which is an excess of immature red cells. This can happen if you've recently had anaemia which is being successfully treated. The initial anaemia could be caused by iron, folate or B12 deficiency.

[JGBH in reply to fbirder]

Indeed fbirder I must find an answer from GP.... I am quite worried and annoyed with her unprofessional and unconcerned ways. Have an appointment at beginning of march, so I will make it very clear I must have an explanation before the end of appointment or if she not able to give me an answer then to refer me to someone who can.

However when I mentioned I would like to be referred to an haematologist she said an haematologist would not be interested in my results! If I have polycythemia then I believe such an attitude from a doctor could be called neglect.... According to her my B12, Folate and ferritin levels are "normal".... (close to bottom of ranges in truth, but far from the optimal levels) and she repeated 3 times I am not anaemic.

What a worry so many people cannot rely on a GP to help them.

[Gambit62 Administrator]

it isn't entirely clear what causes the sighs - although anaemia is one possibility it also seems to affect people who aren't anaemic and can remain after the anaemia has been reversed.

Another possibility is the effects of B12 on the nervous system and the possibility that the brain is mis-interpreting the signals and thinks that your tissues aren't getting enough oxygen when they are so it tells you to take deeper breaths to get more oxygen into your lungs etc.

I've never, to my knowledge, had aneamia - but I do have problems with the sighs and also find that minor changes in my blood oxygen levels affect me long before the levels at which GPs would start taking action for an oxygen absorption problem.

[jillc39]

thank yu Gambit62 - we will sigh together then.