Hi to all! I 'm new here. I took a private blood test to get to grips with low thyoid issues,( since Dec 2013)I am on levothyrosine 62.5mcgs daily. Now find I have low Folate Level ( 3.4ug/L range 2.9-14.5ug/L). And also B12 low-ish or normal range at 75nmols ( range 25.1-165). I am 69 years old. Are these the level of results typical for someone my age? What should a GP do, if anything ? The blood test Dr says to request a FBC ( full blood count).
I have many 'symptoms'! the following are uppermost at the moment; low energy, weak muscles in legs ( but can still walk 4 miles followed by intense resting for at least 2 days. ) Fatigue. Pins and needles in hand(s) on waking for 30 years. Dry eyes. 7 hours awake, then need to sleep. Some epsiodes of breathlessness relieved by inhaler. ( since I had Covid March 2020) The love of my life is reading and I can still do that. I don't work currently, thank goodness. I don't think that I could. Any comments /advise/references would be appreciated.
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Esmielola
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Each CCG/Health Board in UK will have its own local guidelines on treatment/diagnosis of B12 deficiency. Worth getting hold of local guidelines for your CCG/Health Board and comparing them with BSH, BNF and NICE CKS links.
Two useful B12 books
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).
BNF treatment info in book is out of date. See BNF hydroxycobalamin link in this reply for up to date info.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)
Links below are to forum threads where I left some more detailed replies with lots of B12 info which you may find useful eg B12 deficiency symptoms lists, UK B12 documents, causes of b12 deficiency, B12 books, B12 websites, B12 articles and a few hints on dealing with unhelpful GPs.
There may be some details in the links that could be upsetting.
Dear Sleepybunny, Thanks so much for all the info. It will take me a long,long time to go through it all and retain some perspective. All rather shocking really,but has given me a broader view of my symptoms over the years. A doctor did try to tell me when I was in my thirties,but I didn't want to know. I rang back many years later and spoke with someone ( a doctor) who clearly thought I was nuts. Anyway I still don't know now for sure, and just wanted to answer your questions:
Yes I did have Ferritin checked it was 80 ( range ug/L 13-180)
Folate was 3.4 (range ug/L 2.9-14.8) This folate result worries me a lot!
I wll talk with the GP tomorrow, and get back to you/this forum if I may to share what the doctor says about my results? Any advise on the results would be welcome. Thanks so much.
Hi Sleepybunny, yes it was all recorded by me in my diary, even though I refused to listen. He said I had 'large red blood cells'. I said it was some kind of mistake! Maybe it was I'll never know, as th edoctor I later spoke with said there was no record in my notes of that. A mystery?
Yes well. I don't know how they could have let me go without any follow up. That's if it was true. Maybe he picked up the wrong notes? It was in an out patients department. A very strange memory indeed. And yes,it could happen to anyone if the information given was not explained fully. Having said that I was determined that 'nothing must be wrong with me', so he didn't stand a chance!
Large Red Blood Cells is measured by Mean Corpuscular Volume (MCV) I is considered a “cardinal sign” of low B12. I had low B12 symptoms for decades, fatigue, pins and needles, poor immune system and I typically took oral-sublingual B12 thinking it would help my fatigue. So typically my Serum B22 was high >2000. Only a few times over the course of those decades was my B12 ever low (I assume now that was when I stopped supplementing). I know that is not typical of PA.
I noticed that my MCV was 102 and even higher (in my lab here in USA the high end is 100). The doctor who was treating me didn’t know why my MCV was high and told me to cut my B12 supplement in half as it was high.
A friend who was being treated for chronic Lyme disease (which this doctor was treating me for) with B12 injections offered me one of hers and told me that it takes about four days for her to feel better.
Well, four days later I was a new person. I then started on injections every three to four days. I think it’s been about a year now.
If your blood cells are enlarged-there is a high degree of certainty that you are low in B12. At least Functional B12 as is the case with me. I have not gotten the tests that would “prove” functional B12 deficiency, as they would not show while on injections.
Good luck to you. You have found the right place. Your life is about to get immeasurably better!
a) folate is very responsive to diet because it isn't stored in the body - being in range is good and being low in range may not mean an awful lot.
b) B12 isn't obviously deficient
c) a full blood count would potentially show if you have any macrocytic anaemia as a result of B12/folate deficiency but 20% of patients who are B12 deficient don't have macrocytic anaemia.
d) the symptoms of B12 deficiency overlap considerably with other conditions - such as hypothyroidism and also long COVID (some of the symptoms that you mention seem to have co-incided with having COVID. Dry eyes are a symptom that for me relates strongly to becoming hypothyroid but others may have other experiences.
e) serum B12 and active B12 are both very difficult to interpret from a single result. Different people are right at different points in what is an enormous normal range. Each individual maintains levels at the point that is right for them using stores in the liver but if you have an absorption problem that mechanism doesn't work and levels in blood start to fall so it's easier to confirm an absorption problem by looking at what is happening to levels in blood over time eg do you have earlier B12 results that showed a significantly higher level.
All of which is a long way of saying that you probably do need more investigation before assuming that you are either folate or B12 deficient. It would be a good idea to ask for a referral for a nerve conduction test in relation to the pins and needles as this sounds like it may be down to sleeping posture.
No clear answers so hope that you are in a position to work with your GP.
Hi Gambit62, thanks fir replying with your experience and knowledge. It is good to have a positive perspective in these times of so many unkowns. I don’t know my GPS well at all, so will find out how they respond. I think I need at leat a 4 week gap for the FBC just to see if ferritin/folate is up or down. Had a previous ferritin in early June and no change. Never had B12 done before. But another test might give me a clue. I’ve started supplements. Would be better to stop you think? I will keep on taking D3 and zinc/magnesium for my hypothyroid .thanks for perspective. Much appreciated.
if you have started B12 supplements it really depends on the strength of the supplements - if its part of a multi-vitamin it won't have any impact on an absorption problem but if it is very high dose (eg 1000mcg+ then you would need to stop for at least 3 months to get a base-line) though high dose oral doesn't work for everyone and it's better to listen to symptoms rather than going for lots of B12 blood tests.
The chemical factory that's the body is so complicated the Drs do not even know what to do e.g. "try this'. I have fatigue and was low on D and B12 was marginally low so tried supplements. Seemed to work. Also adjusted diet for more potassium. And then there's the interaction between nutrients in the stomach and when older the efficiency of absorption. Now I think my heart may be the cause of fatigue and breathlessness. or is it the supps I take? I'm 76 but will keep fighting the grim reaper!
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