I have to SI everyday to get by and it's a slow process as you all know. Believe me I do feel it when I miss just one day by way of lack of energy, breathlessness, anxiety, drop in blood pressure, increased pulse etc.... although things are slowly improving.
My question is:-
Will this affect the erythropoietin results as I am clearly using the B12 to make lots of healthy red blood cells.
I ask this as kidney disease runs in my family as Erythropoitin is secreted by the kidneys which is used to tell the bone marrow to make lots of healthy red blood cells as the B12 does.
I feel it warrants further investigation as maybe I wouldn't need so much B12 should any results suggest this a lack of this hormone.
Any thoughts would be greatly appreciated as I would like to learn in "layman's terms" of both pathways (B12 and EPO) and how they differ and maybe interact.
Thank you all.
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Scientist, not medic. You're now speaking my language!
Epo is a fascinating topic and I'm glad you've raised it. I will try to keep it simple. I'll almost certainly fail.
The relationship of Epo to Hb is not straightforward. If you plot Epo vs Hb, you get a bi-phasic relationship.
Put simply, when the Hb is in the 'normal range' then the Epo level is low, and the slope is virtually flat. However, when the Hb falls, the Epo level rises markedly; the lower the Hb, the higher the Epo. [I have equations but I won't bore you with them.]
If you're unable to secrete sufficient Epo due to chronic renal disease, then B12 won't get much chance to do its job. This is where you need the input of a renal specialist, and that's probably where Epo injections come in.
You will still need all the other bits and pieces that go into making red cells, as Epo is very good at using up iron stores.
As Hb falls, say, due to lack of B12, Epo secretion rises in response to it.
If Epo secretion fails due to renal disease, then Hb falls because of it.
This isn't something you can manage on your own; it needs specialist supervision.
Absolutely and thank you. The haemtologist was not interested in that as my haemoglobin was normal. I am microcytic due to thallassaemia trait.My GFR was above 60 so would that have to be much lower to affect EPO production. Put it this was do you know of any decent tests to determine this and would my daily B12 injections plus all the rest(multi vits folate etc) scew the results. They just want to band it all in CFS/ME. I don't have this that much I know but it is a huge struggle.
Hi. Thanks for your response. You clearly have a decent understanding of what goes on! If your Hb is in the normal range, then you've got enough Epo. [In some circumstances we see patients with raised Epo, and that leads to a secondary polycythaemia.] It's important to keep an eye on your iron status, as it should be normal. In thalassaemia traits, microcytosis doesn't help as you're always microcytic and it's important that you remind anyone that you have a thalassaemia trait. Likewise, macrocytosis secondary to a megaloblastic bone marrow is harder to spot, as your red cells only overlap into what we'd consider as 'normal'.
If your renal function started to fail then Epo secretion would probably decrease, and therefore you would become anaemic, pure and simple. The most useful thing I'd consider is simply monitoring your blood results against time, and look for trends. Your doctor will have access to services that perform Epo tests, although they might be a 'sendaway' test as it's not commonly provided.
Hi and thank you again. They don't seem to be interested in my microcytic state at all. "Yep he is thallasssaemia trait " job done no father investigation required at all. Well.... I am just curious as to why I still need to SI daily Hydroxy and still do not feel that great. As you know getting anything done is a real struggle and I am positive that I am not alone in this.
You have a microcytic red cell picture because you have imbalance between the synthesis of the globin chains in your haemoglobin. However, if you need to SI B12 regularly, then you presumably have issues absorbing B12 from your gut, and that's another thing entirely. It's important that you don't overlook anything, and it's also improtant that you don't get prescribed iron unless you actually need it. Simply noting a low MCV [due to Thalassaemia] and a low Hb [due to megaloblastic anaemia] could easily be conflated and misinterpreted as 'Iron Deficiency'. But you're forewarned an forearmed, so don't let that happen!
Comparing your results over time will relatively easily allow you to detect something has changed. [Spreadsheets are great for this, and if you need help I'm sure there will be plenty of folks you know who can help you.]
Thank you. I have had the tests done that confirm I am thallassaemia trait so there is no questioning that.My iron panel came up normal and I don't take any prescription iron but simply a daily multi vitamin patch patch that contains 26mg iron bisglycinate.
I am working with a naturopath to heal my gut slowly and have had extensive testing done. There is no guess work here. Slow and steady is the order of the day with that one. The fatigue is very testing for me and not easy to deal with despite daily SI. I am taking all the cofactors such as keeping my folate, potassium,magnesium etc up as well as a decent diet but it all seems to be so slow but I will not give up. Unless there are other things I need to support my body with regards to daily SI depleting the body of other nutrients. Do you know if daily SI depletes the body/blood levels of anything or is that all a myth?
Hi. B12 is a water-soluble vitamin, and you have limited capacity to absorb and transport it. Any excess is lost, as it's excreted in the urine. As for iron however, that needs closer watching because we have no means of getting rid of excess. Any iron we ingest is likely to be absorbed and stored. Any iron from red cells being broken down is also conserved. The normal daily diet [from my creaky memory] is around 20mg.
So, B12 injections would deplete stores of iron if you needed to make more red cells. Every millilitre of red cells equates to 1 mg of iron, but generally the only way of getting rid of iron is by blood loss. If you have a 'normal diet' then it's almost certain you'll have enough iron in that without taking supplements.
Right got it. Basically the body is an iron efficient machine. Extremely so. I know i am not bleeding. Right..... so....... as I have been SI EOD and daily for most of the year now I am no longer spiking a huge growth spurt in the production of new red blood cells anymore but more so just keeping the production of red cells going therefore my iron will not be getting depleted unlike in the early stages of injecting. I hope this makes sense and is true. Yes? And thank you for your extremely wise insights.
Whether you need to be SI'ing every other day now is another matter. If you have neurological symptoms associated with B12 deficiency then it's reasonable, but you may not need quite as much if your body is 'in balance'.
Haemoglobin is broken down into haem, and globin. The iron is scavenged and re-used. Globin chains are likewise scavenged and the amino acids are recycled. The haem is surplus, and is broken down into a range of coloured compounds that do a good job in colouring various 'bodily functions' to keep it polite!
It sounds to me like you know what you're doing. Even so, it's still wise to have some degree of medical input. Possibly to educate the medic, from the sound of it.
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A clinical picture of a B12 deficiency and PA explained.........
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VISIT TO GP ON 12/01/17
