I've been very ill recently (3 bouts of sepsis due to an infected obstructed kidney) and my recovery hasn't been as quick as expected, so I asked my GP to do some tests to make sure it was just the recent illness and not something in addition making me beyond tired (I'm more tired than I was just after having a baby - when I need a nap, I need a nap now). I also have a sore tongue which I suspected was thrush after three months on antibiotics.
The bloods came back and my GP noted low but rising iron levels (I suspect while I was in hospital they must have been lower). When I spoke to him we compared these with some 5 years ago and they aren't much different (I was tired then too). However I noticed from the results that my b12 was the low end of normal and folate was at the bottom of the range. The results are:-
B12 -291 ng/l (200-680)
Folate- 2.5 ng/ml (2.5-17.0)
Iron 13 umol/l (7-30)
Transferrin 3.2g/l (1.7-4.3)
Transferrin saturation 16.2% (20-50)
My kidney function has been mildly impaired and is on the way back up and is now normal.
I need to see my GP again in three months for kidney function and he has suggested redoing the iron test then. I have been taking high dose b vits (berocca) and spatone for 5 days and I feel so much better. I was going to continue this for the three months.
I tend to get restless legs and stabbing nerve pains - although the levels are normal could they be causing this and the sore tongue as they are low?
What tests should I ask for in September, the above repeated or more? Any thoughts at all? Any advice as to what to do?
Thanks
K
Written by
Katiedoodle
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Best to wait and see what new results you may have in September, best not to supplement if you can, so your blood tests in September may show what kind of treatment you may need. Ask to have folate and B12 and ferritin tested again in September and see if anything has changed. If there has been a drop to put you in deficiency range with say serum folate, then you will get the right treatment and diagnosis from your GP, which is worth waiting for. I think anyway. Kidney function can affect so much, so if that is improving you may find other things improve. Its just that you are now borderline in your results, if you can wait you may show deficient next time and get the right treatment. The symptoms you have could well be anaemia related, it being iron and or folate and or included B12 deficiency. Should you still feel unwell and all test results lead to nothing you could then ask to have the active B12 test done, but it is important that you do not self medicate now as that will scewer all future test.
Supplementing will affect the results of tests ... though I'm not convinced that wasting several months of your life feeling awful justifies not supplementing.
Tests to ask for include IFA (Intrinsic Factor Antibodies) and PCA (Parietal Cell antibodies) which can help narrow it down to being a absorption problem - ie whether the correct course of action is upping the B12 in your diet or if you need to supplement in another way. Even if you find that dietary supplements help you could still have a problem with absorption so this might not be the most efficient way of supplementing.
Active B12 (measures Transcobalamin rather than total cobalamin) is a better diagnosis of low levels of B12 but isn't generally available on NHS.
You might find the following links useful
NICE guidelines on diagnosis and treatment of Folate and B12 deficiencies
Both are quite technical - and wouldn't claim to understand them - but the BCSH guidelines do now acknowledge that you can be B12 Deficient even though tests come back in 'normal' range.
You might also find this US sight useful - haven't had much time to look at it myself but if a US government agency (Centre for Disease Control) is saying that 1 in 31 of population over 51 will have problems with B12D that is far from saying that it is a rare condition and it really is one that GPs in this country should be more aware of and taking more seriously.
Any chance that you could talk to your GP and work through the problems of supplementing v timing of tests with them ... bit hesitant to suggest that but may be there are some materials on the CDC site that you could use to back up concerns.
Thank you both that is very helpful. I'm very reluctant to stop supplementing. I've gone from crying when I wake up because I'm so tired to actually being able to function. I have 2 young children and I am the sole earner. I need to function - I've already had 5 months in and out of work with sepsis. I can also guess what had caused the issue - years of metformin followed by 4 months of antibiotics (affecting absorption) and then kidney problems ( which I understand can cause a 'dump' of b vits).
I will certainly ask for the tests in September and when I next see my GP I will discuss supplementation.
Hi Katie,
I do understand, and think you are choosing the best option, discussing supplementation with GP.
I may give the right advise and in an ideal world that works, but I have started to supplement with iron as I'm not prepared to go down to the extent that my blood test will show anaemia, for me its good enough to see that my ferritin ( and MCV) has dropped (even with spatone supplementing over a year) and having been iron def some years ago I'm just not happy to go back there, so I do understand. Its just so sad that you have to wait until you are so broken before you are offered treatment. But its worth having a diagnosis to get the right treatment, so its what you can cope with that decides what you actually do.
Thank you, I think I would feel differently if there were no obvious reason for the deficiency and may be willing to wait then but I'm sure GP will say metformin and sepsis are to blame. If there is little improvement then we can look at it again.
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