Hi everyone, I've seen the more amenable GP today and have got the results of the further blood tests I had done. Well he has concluded that I have an iron and vitamin D deficiency and GP also said the homocysteine results were high and on the lab results which I have got a copy of it said A non-fasting state and/or concurrent Folate and / or B12 deficiency may result in raised serum homocysteine levels.
Serum ferritin. 7ug/L. (10 - 290)
Serum magnesium . 0.78 mmol/L. (0.7 - 1.0)
Serum homocysteine . 22.8 umol/L. (4.0 - 16.0)
25-OH-Vitamin D. 23 nmol/L (50 - 250)
Serum B12. 304 ng/L (170 - 730)
Interested in your thoughts please as GP thinks I should see how I am in 3 months after the Iron and Vit D, wasn't willing to do other tests yet even though I said I would pay for them. Thanks guys.
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Cali25
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Not sure there are other tests to do - your B12 is certainly in the grey range and if your homocysteine is high that's 2 markers pointing to B12 deficiency - and if you have neurological problems that needs to be addressed now rather than delaying for another 3 months.
Your GP may be ruling out B12 in the mistaken belief that macrocytosis is always present if there is a b12 deficiency - though actually around 30% of people with a B12 deficiency present with neurological symptoms without any signs of macrocytic anaemia - and having an iron deficiency is going to potentially mask macrocytic anaemia because it tends to make red blood cells smaller.
Are any investigations being done to establish why you have so many deficiencies? - points to an absorption problem - making B12 more likely ... and it would be useful to know what folate is doing as well.
Hi Gambit, my folate was 7.1 ug/L. (3 - 19) the time before as this latest test there was insufficient specimen I did ask about an absorption problem and he didn't rule out an endoscopy if there is no improvement. It's a wait and see sort of attitude 😬
frustrating. hippocratic oath is to do no harm, not to do nothing. leaving a B12 deficiency untreated for too long can result in irreversible nerve damage
I've shown him that info as well as other guidance from NICE. I think it is always about cost, as he said if feeling ok after the 3 months treatment I will be able to buy my own as they come under food supplements!!!
Cost per injection, I believe, is about the cost of a bar of chocolate, and if their problem is the nurse's time, they could teach you how to do it yourself. What would be the cost, say, if the GP's experiment doesn't pan out? As Gambit said, the risk to you could be irreversible damage.
I know and it's so frustrating, he commented on the lab report about the homocysteine being high "A non-fasting state and/or concurrent Folate and / or B12 deficiency may result in raised serum homocysteine levels" Part of my battle is because I have diabetes & like to blame tingling etc on that. I have slight retinopathy which has been monitored for the last 8 years and has been stable but just had screening again and referred back to the hospital. I have also read that a high homocysteine level, low b12 is a contributory factor to this. No surprise that this deterioration has happened in the last 6 months! So is the GP going to take responsibility for further damaging my eyes as well.
Wondering whether to see a consultant privately, who would be best to see a haemotologist or neurologist? Thanks to all for your responses.
I know how you feel , I'd go back to your G.P and politely request to be referred to a nurologist , if they refuse ask again until he agrees as it is your right , although I'm not sure how long you will have to wait once referred . my husband was recently referred but refused more B12 injections as the GP didn't want him to be overdosed ! he has obvious neurological damage and can hardly walk , he's exhausted , pale and a definite PA diagnosis , he is in a lot of pain , the GP said to put an ice pack on his back and to reduce his morphine , not very helpful , I was so frustrated trying to help him was almost in tears as he's the second GP to refuse futher shots , he's had 6 loading jabs and has to wait until April for his next one even though I showed him nice guidelines and list of symptoms including fainting , etc . I hope my husband hasn't got to wait long for nurologist appointment as I'm scared he won't be able to walk at all soon , he's 58 and used to be so fit and active apart from developing osteo arthritis , he's had a total hip replasement 7 months ago so should be fine by now but we had to buy a wheel chair or he'd be virtually housebound , he has microscopic aneamea . When I asked about having his folate levels checked I was ignored twice . I'll have to be even more assertive but calm next visit , , when I asked him to read nice guidelines he answered he has many patients . Such a struggle for a vitamin , something has to be done soon , my sister in law is a journalist for the BBC , thinking of telling her all about it. He is getting MRI results from his spine in March and hopes to do some physio even though he's very weak and very depressed but I won't give up trying to help him , sorry for rant and I wish you the best of luck with your fight too
I'm also 58, and was deteriorating rapidly when on 3-monthly injections until I'd reached a stage where I could no longer understand what the Dr was telling me. My GP realised that she was in uncomfortable territory and , since she is not able to refer to two different specialists concurrently and that a lengthy delay would result if selecting one over the other, she decided to contact the haematologist herself and send me to a neurologist. I called up on 13th Jan (after she had had time to send her notes to Guy's) and got a date for 5th May. This is good: have heard that the national average is 7 months waiting time for neurology. Meanwhile, I am on 2 injections a week to keep me safe. There ARE good doctors, able to make judgements on severity of symptoms by using sight and common sense, then backing up suspicions with specialist advice and the appropriate tests.
My B12 had gone from 196ng/L to over 2000ng/L (off the measurable scale) in months, but I was getting much worse - raised Methylmalonic Acid (MMA) levels confirmed ' functional B12 deficiency/insufficiency at tissue level' - blood's swimming in it, but not much getting through to where it's needed- so needs continual topping up.
So Cali25, I would say probably neurologist, and book as soon as possible. Good luck!
Annon58, see Stichting B12 Tekort: in Pinned Posts, top right-hand column. There is a report about misguided beliefs about B12 overdosing that might help you: show nurses as well- my nurses were understandably initially worried about giving 2 injections a week for the first time - Stichting B12 Tekort recommend this frequency for improvement of neurological symptoms. I'm still improving and they can see that happening- for example, at first I could not even feel the injections at all. Some would call that lucky! Where I AM lucky is in lack of any problems with walking.
Wishing you and your husband all the best. It IS possible to improve but an ice-pack is not going to do it. Timing is important, and I can't believe your GP even needs to read NICE guidelines to discover this. Are you members of the Pernicious Anaemia Society? Your husband has a definite PA diagnosis- they will be able to help you. Don't struggle alone.
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