Well... I am asking questions again... I know you good folk will help me out if possible...
I have just picked up a copy of my blood test results...
Serum total 25-hydroxy Vit D level... result... 24 nmol/L Range <30nmol/L indicates deficiency
Serum Ferritin level ... 31 ugl/L range.. (30.0-400.0)
Serum inorganic phosphate level ... result... 0.68 mmol/L Range (0.8-1.5)
Any help trawling through this would be great.. Thank you in advance
xxx
Hi 49goingon99.
Blood test results: vitamin D deficiency, low ferritin (indicative of iron deficiency anaemia), low serum inorganic phosphate (can be a result of vitamin D deficiency).
Also - if you are on medications for your autoimmune condition, these can impede the absorption of some vitamins and minerals (usual culprits are vitamin D, folate, ferritin, calcium, magnesium).
Note that your GP has previous prescribed supplements for vitamin D deficiency and low folate. Not sure what your folate is like now, but the vitamin D doesn't appear to be much better. Not good enough foryour GP to tell you to buy your own (though lots appear to be doing that now). Your perhaps need higher doses of vitamin D for longer, and that needs monitoring with regular blood tests to ensure that a) your levels are rising and b) you don’t get vitamin D toxicity (quite a balancing act, sometimes).
Here's somewhere you can find more information about vitamin D...and the doses needed for treatment:
You also need iron supplements - again, GP should prescribe a course of iron supplements and then re-test to check levels and decide whether you need longer term supplements. Not a good idea to self supplement with iron since iron overload can occur - not something you want.
All in all (and together with your B12 deficiency) indicative of absorption problems which need careful monitoring because of the additional complexities that may occur due to your autoimmune condition and any medications that you're on.
Note in,your previous post that others have suggested (quite rightly) that you should be getting intensive B12 treatment because of your neurological symptoms (after the loading doses, every other day until no further improvement). Hope your GP is aware of this and has increased the frequency of your injections.
About the intrinsic factor test for pernicious anaemia - 40%-60% of those with PA test negative so you can test negative and still have PA. Despite this, there are many causes of B12 deficiency and the treatment is the same, whatever the cause. B12 injections. Just wondering if your GP has tested for Coeliac or Crohn's disease - autoimmune conditions that can cause B12 deficiency (autoimmune diseases do tend to come in clusters, so it's possible to have more than one occurring st the same time - and the treatment for each may differ.
About serum B12 testing once injections of B12 have started - not necessary (all the guidelines state this) as B12 levels will be very high (sometimes way over the top of the reference range). Some GPs assume that if levels are within the reference range following injections, then the B12 deficiency is no longer present. And some stop injections. This is wrong. Once treatment has started GPs should consider the clinical picture and treat according to symptoms, not serum B12 blood test results.
In your case, some of your symtpoms may be due to your ongoing deficiencies, which can make you feel very ill. However, this does not mean that you do not need more frequent injections since at the time of diagnosis you had neurolgical symptoms, and you still have them. Ask your GP to check in something called the BNF - prescribing guidelines - he will have a copy on his desk). Third paragraph down details the intensive treatment with B12 injections for those with neurolgical symtpoms - doctors don't usually read that far down so you may have to point it out.
Here's a link to the BNF:
bnf.nice.org.uk/drug/hydrox...
(BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)
However - BNF describes this as the treatment for pernicious anaemia. Your GP may say you do not have this (debatable) but the treatment for pernicious anaemia is treatment of the B12 deficiency it causes. Ergo, the treatment for B12 deficiency is the same, whatever the cause: B12 injections.
If you read the second and third PAS pinned posts to the right of this page when you log on (or at the bottom, if using a phone), there are links to more information that will help you to understand more about B12 deficiency - and what your GP should (or should not) be doing to help you.
Can well understand your previous comments about life being very different (and difficult) right now. I too have an autoimmune condition in addition to PA - and they're a devil to get under control. So I know just how you feel.
Hope things start to pick up soon and post again if you need more support or advice.
Good luck.
👍
Thank you so much for taking the time to put all this down for me. Its a lot to take in... and i will be taking notes! ( I cant take much in atm) I am low in things that my GP hasnt noticed. I am worried why my body isnt absorbing any of these important things that my body needs .
xxx
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