I made a post recently about my issues and waiting for my intrinsic factor test to come back and thought I would make the updated info into a new post. The intrinsic factor test came back negative (0) and I have now spoken to two doctors over the phone and my hematologist who say I don't have a b12 deficiency and that they "don't know" why I am having all the symptoms I am as my b12 is "perfectly fine". As a repeat right now my symptoms are: extreme fatigue, inability to exercise due to fatigue, breathlessness and dizziness when trying, heart racing and breathlessness climbing one set of stairs, forgetting names of objects/things, tinnitus, yellow skin, lightheadedness and unsteadiness in darkened conditions, restless legs, vision disturbances - blurred vision and difficulty focusing, pins and needles, tingling lips and constant tingling in my feet, weakness/loss of hand control when typing/writing, scalloped reddened slightly enlarged tongue, ridged nails, cold hands and feet causing chillblanes in winter, weight loss, indigestion/reflux unresponsive to diet (better eating acidic foods) and inability to eat normal sized meals - meat in particular is harder to digest, salted foods taste very salty. My b12 has been 215 so 15 above the minimum range (200-900) for at least 3 years my iron has been 17 so 2 above the minimum (15-250), my hematocrit is 0.38-9 so 1/2 above the minimum (0,37-0.47) and i'm deficient in vitamin d (taking supplements). My recent blood last week test taken a month after the above levels came back slightly higher for the first time in 3 years at least with a b12 of 280 and an iron of 43. The only difference in my lifestyle this month has been my vitamin d supplement and that I can barely eat any food - I am consuming as much high b12 meat and fish as I was before but I am eating it alongside only tiny portions of boiled mushy soft veg so my only thought is that the low stomach acid I believe I have and others on here mentioned has been able to extract slightly more from my food due to the decreased amount of food in my stomach when I eat. I have mentioned that low/iron and b12 can in tandom make MCV appear normal and despite the fact that the NHS website SAYS that intrinsic factor test is only 50% accurate and that b12 deficiency is possible even with normal levels and symptoms should be heavily taken into consideration and online nhs documents say that secondary testing is needed if b12 comes back between 100-350 the doctors shut me down saying the b12 level is fine and normal and it definitely can't be that. They instead keep repeating I must have chronic fatigue syndrome when I don't have any other symptom of that condition listed on the nhs site and when I asked why then do I have yellow skin when my liver function is fine they just replied "I don't know it's very strange." I have lost 3kg in a couple of months, am unable to eat sufficiently and my bmi is incredibly low and yet despite this the doctors don't seem to be bothered. My aunt who is a nurse is incredibly angry saying I need a second opinion but the way doctors are reacting to me it feels hopeless and is making me start to feel like a hypochondriac. I have seen on here that some people can provide recommendations via private message about getting help which my mum is keen for me to do? I have already received such amazing support on this forum and I'm hugely thankful to all responding and helping me with this!
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liaratsoni
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In your circumstances I think I would be getting a private blood test (assuming you’ll be unable to get one from your gp)
I would test holotranscobalamin (active B12),particularly as your serum B12 levels have only just been above the bottom of the range.
I would also test MMA. A high MMA result indicates that B12 is not getting into the cells where it’s needed. I think I have read on this forum that this is called a functional deficiency, where your serum B12 results are fine but MMA is high.
As far as eating is concerned, if you do have an absorption problem then eating B12 rich food will make virtually no difference so perhaps I wouldn’t bother. Personally I find it much easier to digest lighter proteins like eggs rather than meat. In view of your weight loss maybe try and step up consumption of lighter proteins, with a reasonable amount carbs and fats.
I haven’t mentioned iron and vitamin D issues as I know little about either.
Thank you for the response! I definitely don't think my GP will give me one they seem very adamant that my b12 is fine. I'm going to look into private tests for those things as that will definitely paint a much clearer picture. Thats also a very good point about the b12 rich foods. I have been eating the highest b12 meats/fish 2x a day for over six months an its clearly not helped. I really appreciate the tips about diet I think you're on the right track. Thank you again!
I am only a recent member of the PA forum, believing I have B12 deficiency at cellular level even tho active b12 blood tests are fine( if not too high) and have many of the symptoms characteristic of low b12: tingling, dizziness, exhaustion, ridged nails, cold etc. But I do have other diagnoses ( hypothyroidism, autoimmune thyroiditis( Hashimoto’s or Hashi), insulin dependent diabetes....) and have initially researched and gone down route recognising the importance of optimal ( high in range) Vit D, b12, folate and ferritin. I have the typical poor gut absorption and low acid level of Hashi sufferers, and learnt how they all inter- relate to each other...one low and others don’t work correctly. Your b12 is low, regardless what your dr. says...should be at 450 plus level for serum test, but folate needs to be half way thru range, as does ferritin, and vit D c.100. I found some oral drops ( or sprays) and sublingual supplements good, bypassing the gut: for Vit D (with vit K2 to help bones/teeth) as drops, and taking vit C with ferrous fumarate to assist absorption. Hashi also take magnesium, zinc...
I have just asked my gp for MMA and hCys tests ...but been told they won’t do it, so unless I pay out £100 plus for private test, which still seems questionable, I can get no further. Thinking about getting b12 injected privately ( within family) as seems opinion ( recent professional CPD video from Academy of Physical Medicine) leans to doing this on alternate days for two weeks to seek improvement in symptoms...as it can’t do you any harm!
Injecting B12 can be harmful. There is a small, but real, risk of anaphylaxis with the first injection. So that first one needs to be done by a medical professional who knows what to do if things go wrong (and has the equipment to handle it).
Fortunately son is doctor used to taking bloods/ injecting,and recognising reactions etc... just not about every two days! Did mean b12 itself ok, tho not necessarily the concoction around it. Sorry.
This is what I can't understand surely GPs would ideally want a normal individual be in the optimal range not barely above the minimum let alone someone exhibiting symptoms of a deficiency. The cost of an active B12 test is £3.50 according to one of the NHS hospitals online documents and a trial period of b12 injections would also be inexpensive and not in any way harmful. I genuinely do not understand why they would rather launch me into timely and more costly referrals to Gastroenterology and chronic fatigue when I exhibit none of the other symptoms of the disease rather than simply trying the above! Thank you for your help! I hope you find a solution - I too am looking into private testing!
The answer tends to be dr.s do minimal training in med school on vitamins/ minerals/diet etc and since we have supposed to have got rid of rickets, beriberi etc with fortified foods and better diet no one could possibly be suffering from such things nowadays. But whatever is giving us diseases with antibodies that affect our guts, or drugs ( like metformin and many more), or our choice to go on the likes of raw or vegan diets etc etc there are many of us who need help and cannot function on the bare minimum levels. On Thyroid U.K. forum seen posts from folks deficient in all 4 essential B12, D, ferritin and folate who still don’t get help from their dr.s. DAFT, for a few pounds.
"This is what I can't understand surely GPs would ideally want a normal individual be in the optimal range not barely above the minimum "
The problem is that for most of the tests doctors run, above the minimum is in the optimal range. It's only a few tests (actually, I can only think of one right now) where the 'normal' range has such a wide overlap with the 'abnormal' range.
So the docs are used to having a black and white answer from a test. And, as Judithdalston says, those doctors only have a very brief session on vitamin deficiencies in med school. And Pernicious Anaemia has to share that afternoon with diseases with much cooler names, like pellagra, scurvy and beri-beri.
What's really needed is for the path labs to stop sending out results that say 'normal' and start sending out results that say 'normal', 'deficient', and 'maybe deficient' like Hull and East Yorks - hey.nhs.uk/wp/wp-content/up...
It really does make you wonder how much money/specialist care each year is wasted when a few blood tests would cost a fraction, take far less time and put less pressure on consultants.
If someone actually worked it out I think it would be staggering.
The amount of patients that get misdiagnosed with MS, depression, early stage dementia etc etc. And that's without the ongoing costs of everything else that develops from going undiagnosed for many years & the knock on effects of that.
I'm pretty sure it would run into very many £millions.
Hi liaratsoni. Just wondering if you’ve had your thyroid checked. I thought all my symptoms were caused by b12 deficiency but have recently found out I have thyroid problems which is causing similar symptoms.
I have had my TSH tested many times and it's always come back in the normal - I'm looking into private blood tests but if I don't find answers with b12 I will def look into thyroid! Thank you
Yes, definitely get your thyroid checked ~ TSH means nothing, especially when you have symptoms, and bogus dx! These things are often connected, so best to join the dots yourself just in case ~ GP's don't do it 😕.
So sorry to hear about your ongoing difficulties with your GP. I can't really add much to what other people say here, other than being made to feel like a complete hypochondriac is a common experience for many of us on here. CFS and similar diagnoses are often given, rather than get to the root cause of the issue. I just wanted to reassure you that your experience isn't uncommon and many of us on here have gone through similar.
Despite a query diagnosis of fibromyalgia 3 years ago, I began self-injecting as a therapeutic trial to treat my symptoms, as my GP just kept maintaining my tests were 'in range'. All they were interested in was the menopause and depression. I'm delighted to say that within 2 months, 90% of my symptoms have now cleared and I now have my life back.
I know we all really want a confirmed diagnosis of an issue, as we worry that we may have missed something, but I feel that sometimes we have to take matters into our own hands. Also, please consider changing your GP, if you can find one with a better reputation locally, or at the very least, getting a second opinion. Your local PALS should be able to advise on your options. Perhaps you should take along your aunt to your health appointments! She sounds like a great advocate and it really does help your confidence having someone else there. I also find it helps remind some GP's to be a bit more respectful!
Thank you for taking time to respond and for the kind wishes! I am so happy you have experienced a reduction in symptoms! Switching GP is definitely something I'm hoping to do and I was looking at doing private blood tests aswell so that if they come back further pointing to problems I have more evidence to back me up. I will definitely ask my local PAS for recommendations too! My Aunt has been really supportive through this and actually offered to come to an appointment with me. She says the same that they're clearly just focusing on the set range when the symptoms are so important and are very obvious to her!
Don't think you mentioned any folate results- also important, and also often low-range or deficient.
I followed advice on here regarding finding a good multivitamins and minerals daily tablet and about folate and ferritin being kept in top 1/3 of ranges. I still eat folate-, ferritin-, and B12-rich food at every meal although I self-inject. I don't even know why now, really- probably just out of habit and so that I can answer dietitian's questions !
It takes a good while to get a balance, and then need to ensure ferritin and folate don't get too high either. This is not an issue with B12 as excess is expelled in urine.
My MMA was (is??) still consistently raised, long after starting B12 injections, but not my homocysteine level, so still no help. My MMA does not seem to alter when sampled just prior and a few days after injection. For MMA test to be useful, liver function tests should be carried out too, to rule out alternatives.
I've also seen good advice about keeping your ferritin, vit d and folate up in optimal range - I'm especially trying to look into a stomach friendly way of getting my very low iron up to optimal but even then I don't think I can absorb it well through my stomach - I was on iron 3 times a day for 3 months in late 2017 for an iron deficiency and my level only raised from 3 to 26! My b12 was also very low at the time though so I don't know if my ability to absorb iron would do better once my b12 was up. I have had a liver function test recently which came back normal. Thank you for all the help!
Hi! I can't seem to absorb anything through my stomach either, thanks to the years of misdiagnosis re thyroid, Vit deficiencies etc, that we all seem to go through😳. Thankfully, Better You now do an iron mouth spray you may like to try. I use all their sprays now and find them excellent. Their vitamin D spray raised my D levels where all else failed...even the useless D injections I was given...it was a life saver! Good luck🍀.
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serum folate 4.4ug/L, serum vit B12 67ng/L
