Getting nowhere and losing hope

Hi there, I will try and keep this concise! I am 35 years old and for the last 18 months or so my health has been deteriorating. I have always been pretty active and healthy, I am vegan, so take a lot of care over what I eat, don't smoke, rarely drink and generally take care of myself.

Last year following an aborted attempt to donate my eggs (long story, but tl:dr - the fertility drugs caused sudden, dramatic ill effects) my system was upset - my periods had always been heavy, but became unmanageably so. I was put on the pill but it led to anaemia and vitamin D deficiency - and *I believe* pernicious anaemia.

There is a lot of information which suggests that the issue with B12 deficiencies showing in blood tests is a big problem for vegans. My B12 keeps coming back as 'normal' (last blood test, in June) my level was 892ng/L (against a 'normal' range of 191-663). My folate is on the high side too (13.4 ug/L against a normal of 4.6-18.7 ug/L).

I started taking prescribed iron, vitamin D which helped. I then started an over the counter oral B12 - and my health improved pretty much overnight! It made a difference for several months before it started to deteriorate again. Now, no amount of oral/sublingual supplementation seems to make a difference.

My main symptom is exhaustion - I walk a lot and over the last few months, exercise which was easy, has become harder. Recently I have been going to bed earlier and earlier as I am just so tired by the evening. My quality of life is deteriorating as I am just not able to do all that I want to.

I visited my doctor today who told me to take paracetamol (I'm not in pain!) and build up my exercise slowly (I am not building up to anything, I am sliding backwards). She 'diagnosed' myalgia or Chronic Fatigue - which by my estimation means" go away and stop making a fuss, we're not going to do anything for you."

I asked for a homocysteine test, they won't do it. I asked for a referral to someone who would, she claims no-one will. She offered me anti-depressants which seems like the go-to thing - I have been offered them every time I go in. Yes, I do have a history of depression, yes, I am kind of depressed right now, but that is a symptom, not the cause of the problem.

I did go to a private doctor last year - with the same symptoms - he also 'diagnosed' chronic fatigue and prescribed hundreds of pounds worth of pills and potions.

I just don't know what to do. I am not prepared to just sit back and watch my health decline and never have any energy or feel healthy ever again. I am at the end of my rope and have lost faith in medical 'professionals' who know nothing about diet and don't seem to care at all.

Please, please help me.

11 Replies

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  • Your B12 levels were rather high - had you been supplementing at all at that point?

    B12 is only found in animal products which is why being a Vegan tends to be problematic. However, lots of foods have added B12 these days - such as breakfast cereals.

    High levels of B12 can trigger an autoimmune response (probably affects 30% of population) that tries to shut down the transport mechanism that gets B12 to the cellular level so you can have high B12 in blood but your cells are still starved.

    This can be resolved by using very high doses of B12 repeatedly.

    However, this doesn't quite fit with your experience of reduced returns.

    There is also a thing called MTHFR - a set of genetic variations that affect your bodies ability to convert vitamins to the fully methylated forms used at the cell level.

    This can affect processing and using both folate and B12 - two vitamins that work very closely together. Exactly how the process is affected and which vitamin is involved depends on which genetic variation is involved.

    There was a recent post that suggested that if you have one of the B12 vitamins involved then it's important to think about which format of B12 you are using - and the wrong type can actually flood the system with the wrong type of b12 and mean that cells again, aren't getting the B12 they need.

    This is a good introduction to MTHFR

    mthfrsupport.com.au/what-is...

    Do you know what your B9 (folate levels) are like? supplementing B12 can deplete B9 and if that happens you will stop being able to process B12 - so another possibility for the diminishing returns

    Sometimes B12 and B9 problems can be resolved by a gluten free diet - though in general this seems to apply where levels have been low.

    CFS is actually a label for a cluster of symptoms - same with depression - and says nothing about the underlying cause but it seems that GPs aren't intelligent enough to have grasped this fact - sorry have become very cynical over the years. Tendency now is to treat symptoms rather than look for and treat cause.

    You may find that joining a CFS community is another source of information and support - there's a lot of information on MTHFR on there as well.

    Finally though, there is a huge overlap in symptoms between B12D and a number of other conditions and having one doesn't rule out another - so it could be a number of things working together.

  • Sorry - just re-read the post and noted that you said your folate (B9) was on the high side. This can be indicative of MTHFR - folate builds up in the blood and is high partly because the cells aren't able to use any of it.

  • Your situation is similar to mine. Very high B12 levels and high folate. My doctor gives me one B12 injection a month because I am vegan, but it isn't enough to help me. I have given up doing anything very physical as it will leave me exhausted for days and I have to dose myself with high levels of B12 in order to get back to normal. Your B12 levels are already high, so taking a B12 supplement or self-injecting isn't really going to matter, because "they" already think you're not B12 deficient. The problem with the serum B12 test is that it doesn't differentiate between active and inactive B12. In fact up to 90% of the serum B12 can be inactive B12. If this was the case for you, then you will indeed be deficient. You could request an active B12 test. It is called a holotranscobalamin test. You can probably look it up online to see if it's available in your country. t would probably be better not to supplement with B12 until you can get this test done. I've had it after I started taking B12 and it came back high, so I am not believed when I say I think I am B12 deficient, even when I tell my doctor that supplementing with sublingual or transdermal B12 restores me to normality, so it's an uphill battle. Doctors are either totally ignorant of B12 deficiency symptoms or choose to have a blind eye about it. B12 is not dangerous. if your body doesn't need what you take, it simply passes out of the system through your urine. the proof to me is in the fact that taking it, i feel almost a million dollars! So many of the signs they look for, such as the size of red blood cells in a b12 deficiency are skewed by high folate levels. High folate levels corrects the size of the RBC which is usually enlarged in a B12 deficiency. Hope this helps and best of luck! Let us know what you decide to do.

  • My high results were 3 months ago - yes, I was supplementing at the time - and my mood and energy levels have deteriorated very dramatically over the last couple of weeks increasing my suspicion that stopping supplementing has contributed. But my GP is reluctant to do anything at *all* to investigate further, preferring to right me off as a chronic and untreatable case. I am very angry and upset with the whole situation. She told me to take paracetamol and stop supplementing *everything*. Clearly she knows nothing about nutrition and would not respond to any reasoning.

    Gambit62, I completely agree about the drs not understanding that treating symptoms and ignoring the underlying cause does not do anything. So if I take anti-depressants, what then? I still have the effects of the deficiency, potentially causing lasting damage. Thank you for the link, will check that out in the morning, with a little more energy and take a look at the CFS forum too, though I am not happy settling on that as a diagnosis!

    LadyNZ, that does sound very similar. It sadly seems all too common. I have struck out on getting tests on the NHS and not managed to find many privately either. It looks like to get anything like that it will involve self-testing over the internet. I am afraid that if I do so, the drs will reject any results and still refuse to treat it.

    Thank you for the responses :-)

  • I also meant to say that the gluten thing is interesting. I have cut my gluten intake dramatically since I feel like it leaves me bloated and sluggish. I had no idea there was a link to vit b. Will definitely look into that.

  • Gluten definitely causes chronic fatigue and can make you feel bloated. Cutting back unfortunately is not enough. You have to be completely gluten free for it to make a difference. I suffered from CFS for 3 years before I learnt about the link to gluten. I was totally skeptical, but would have tried anything to feel better. i went completely gluten free and the chronic fatigue disappeared after 2 days, although I expect it might be different for some people.

  • Do read Dr. Sarah Myhills book(Amazon new £13.48 also 2nd hand available) called" Diagnosing and Treatment of Chronic Fatigue Syndrome---Mitochondria not Hypochondria"

    York Laboratories supply a Homocysteine Testing kit, but it's expensive at £150. I think. You will get there as long as you don't give up hope. Please keep talking to us.

    Thinking of you All the best.

  • "Algae and some other plant foods contain B12-analogues (false B12) that can imitate true B12 in blood tests while actually interfering with B12 metabolism."

    Could any supplements you may be taking or which are added by manufacturers to food come into this category? This might also have the effect of blocking your actual uptake of Vit B12. Another thing that could be happening is that you were initially able to absorb B12 orally but that you have developed a metabolic problem (like pernicious anaemia) and need to take it intramuscularly or perhaps as methlyb 12, sublingually (a more direct form), e.g. Jarrow Formulas Methyl B-12 -- 5000 mcg - 60 Lozenges (which are meant to be consumed by being placed between gums and cheek.)

    However if you have a true metabolic deficiency or at least inability to absorb via the gut, you might find that the sublingual lozenges did not do the trick.

    I am from Australia and we are able to get injections of B12 over the counter. I gather that this is much more of a problem in the UK. Could you see a private doctor and request the homocystein test?

    Also, have you had your thyroid tested?

    Hope things improve for you.

  • My NHS doctor told me to continue with the oral tablets for as long as l can as eventually my ability to absorb them will fail. Then l will have to start injections ever 3 months again increasing to monthly over time.

    Could you look at private injections to see if you feel stronger?

  • My relative (formerly vegetarian/vegan) was misdiagnosed with ME, (at one time in a wheelchair ) for many years and then dementia - it was severe B12 deficiency - her high levels of B12 from supplementing were masked by high folate and there was a huge struggle to get monthly injections. Looking back, it is obvious that diet was the main factor and she'd long had subtle indications of low B12 (severe fatigue, loss of smell, headaches, etc.)

    Contraceptive pills deplete B12 and women have high nutritional needs, including B12, which is essential for healthy children, etc ( B12 builds DNA) and, I'm sorry, although I respect your views, it looks as though you probably aren't getting enough B12 from a vegan diet, even though supplementing.

    chriskresser.com/what-every...

  • Thank you again for all the replies. It is so nice to have people actually *care* - I actually burst into tears at my doctors in the face of "there's nothing we can do for you" - it is so frustrating to be told they are happy to sit back and watch you decline and do absolutely nothing.

    LadyNZ, I will definitely look further into going gluten free - it's just so *hard*!! I will do what it takes, but there is gluten in so much! Do you buy specific free from items or just go without certain foods?

    Wedgewood, I will go and order that book, sounds very interesting. My concern with spending money on tests is that even if I find the answer, my GP won't accept it or treat it. And then I would presumably be forced to buy my own injections online and DIY it!

    Astridnova, I don't think there's anything that I take that falls into that category. I was taking a sublingual supplement which worked for a while, but now is not. And no, we can't get b12 injections over the counter. I phoned around to find someone to do a homocysteine test yesterday and came up blank. I can't find anywhere that does it, though will keep trying. I am somewhat reluctant to end up in a place where I have to pay forever more for treatment though. Thyroid has been tested and comes back normal.

    RonnieRoo22, I think going private is my only hope at this stage but as I mentioned above, I am somewhat reluctant. So far I have not found anyone private. I went to someone last year (on a recommendation) in the hope that he would give me b12 injections but he rejected that as a possibility and wanted to sell me all kinds of other supplements instead - was a costly lesson!

    Polaris, I have been vegan for around 3 years and was a vegetarian for over 20 years prior to that, starting when I was a child. My diet at that point was far from good and I suspect the damage may have been done way back. I only realised the importance of supplementing when I went vegan and have only consistently done so since then. I have a very balanced, healthy diet, but as you're aware, b12 is difficult to get from plant sources. The diet is non-negotiable, so I need to find a way forward from here.

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