Breathlessness

[lucieboo]

I looked again at my blood results. I don't think I have iron-deficiency anaemia, but may have macrocytic anaemia and B12 deficiency: I am going to try a supplement. This condition results in too-large red corpuscles and low haemoglobin, hence lack of available oxygen. If this fails I will ask for a B12 and ferritin blood test. I do have stomach and absorption problems (gluten intolerance) so B12 deficiency would fit.

[mustabshra]

Hi lucieboo, I was vegetarian wen diagnosed with ET. But now I am eating non veg, to just rule out my b12 levels stay fine.my iron was already ok. U gave pv and for u obviously things should work different. I feel breathless so often and I still can not find the reason.eating meat is not helping me even.

[mustabshra]

U have pv not gave* 🤔

[mhos61]

Hi Lucieboo,

One of the side effects of hydrea is macrocytosis, an increase in red cell volume. Mine has increased slightly since taking hydrea. Someone on the forum once asked their haematologist about this, and one of his comments was, its also a way of knowing you're still taking the medication too. So, must be expected!

The problem with this, is it could easily mask B12/folate deficiency. Maybe you should ask your GP for a test, rather than self medicate. My GP tested me recently, all was fine. Hope you’re breathlessness improves with the seasonal change.

Mary x

[lucieboo in reply to mhos61]

Yes, think this is correct. My macrocytosis is recent and mild, so perhaps it is not the cause of breathlessness? I will check it out.

[Inca]

Hi Mary & Lucieboo,

I have this too,and something else that means large reds ,can't remember just this minute,also too many young cells??????Oh if only it meant regenerating the whole body!!!Its always written on my test sheet.......like'see me after class' !!!!!!Sally

[stillkicking]

Hi Lucieboo,

I was wondering the same thing in my own case. I have had varying degrees of breathlessness and a cough for the last few months. I have ET. My MCV is 110, MCH 38 and haemoglobin 138. I did get a GP to check ferritin and B12, but both OK. I asked my haematologist about the MCV, but she assured me that she has patients with it at 120 and it doesn't seem to make any difference. I still wonder about it though. My instinct tells me that, whilst the numbers themselves may be fairly unremarkable, they are so different than a few months ago that I wonder if my body has struggled to adapt to the change? My "normal" a year ago, prior to starting HU was MCV 91, MCH 30 and haemoglobin 151 - 158. I wonder if we have a form of "altitude sickness"!

Hope you are able to get some answers.

Best Wishes,

Peter

[lucieboo in reply to stillkicking]

Hello Peter

So many seem to have a similar problem, so perhaps there is no answer at present and this is why the haematologists look at you and shrug. I'll try the B12 but if there is no response I will just carry on doing my best with breathing exercises and control, it does seem to help a bit. My doctor here is Spain says 'Do not be pushed. Everything at your own pace (su ritmo).' Probably the best advice.

Good luck and keep kicking!

[Wyebird in reply to stillkicking]

I’m ET oh how I wish I had heamoglobin above 115.

Weird isn’t it. My breathlessness tell me to rest my body.

[Searcher56]

I had a blood test at Guys last April and it said I have a macrocytosis which is new. My GP did the hemantics blood test, which is a test for vitamin levels and also the 75g glucose tolerance test. Everything came well within the normal range except the serum transferrin which was a little low. I take lots of supplements, maybe even too many, but how do I know what is good for me till I try it and have personal experience. As for B12 supplement, I recently bought B12 from a company called Cytoplan. The good thing about their B12 tablets is that they dissolve under the tongue. There are lots of blood vessels under the tongue and vitamins can be passed directly in the blood. That is why some tablets are recommended to be taken sublingually in order to bypass the digestive system. My GP suggested that I take iron supplement in a sachet. I think it is iron rich water, in natural form. I bought a make called Spatone. For some reason no haematologist has ever suggested I take iron supplements in spite of having low haemaglobin.

[Wyebird in reply to Searcher56]

Have you told your haemo what you are taking? Apparently iron overload is dangerous. Like you I keep trialling. My latest is to take vitamin. C with every tiny piece of protein. My bloods get checked in just over a week.

[lucieboo in reply to Searcher56]

Assuming you have PV, you should not take iron as this will encourage red blood cell production. I think B12 is OK to take.

[Wyebird]

Hi I suggest you ask your doctor before taking supplements. I was told it was ok to take b12 supplements to boast existing levels as long as I wasn’t b12 deficient. My problem is having sufficient ingredients but still able to raise my haemoglobin.

Blood tests will reveal all.