Bit of a Moan (Sorry)

Hi all i'm new around here and fancied a bit of a moan so if you do have the time to read and give me any feedback it would be appreciated but partly the moan is for my own sanity.

Some background information about me i am 23 year old white male with blue eyes (apparently being white and blue eyed is a higher risk category) i'm also British :)

I love dairy and meat products so it would be hard for it to be a diet problem.

I have suffered from depression since i was around 17 and as i have gotten older things have added to it these include;

Paranoia, anxiety and obsessive traits with recently constant pins and needles in my left arm from the elbow down as if someone is rubbing my funny bone constantly. Its not too bad in the day but at night makes it very hard to sleep.

When i was 19 in 2010 multiple B12 results come back low and i was given the initial injections for B12 deficiency and was also given folic acid tablets. After the initial 6 however i switched doctors and not knowing really what was going on with only being 19 they did blood work when i switched over to them and not surprisingly my B12 was ridiculously high and was not checked for another 2 years in 2012 apparently this check the level was NORMAL however i do not know what the actual reading was.

While all this was going on i dropped out of College three times due to depression and anxiety and also earlier this year dropped out of uni after finally finishing college.

I say for depression and anxiety but after reading about B12 deficiency it feel alot more like the constantly tired and the fogs feeling. I can get to the point where i just have to sleep in the middle of the day because i feel so ill. I also have very frequent headaces.

The doctors thinking this is just depression refer me to the hospital and when i mentioned my arm i was told it is most likely "just in my head". The mental health team in the hospital started seeing me and think i have 2-3 personality disorders and put me on an 18 month waiting list for therapy. At this point me and my mum where getting to the end of our tethers and decided to pay for the therapy privately, the first thing the therapist said is she wanted my full blood count done, iron, b12 and folic acid to enure that i wasnt anemic because to her i looked with my completion and i guess how i come across with the fogginess.

So i asked for the tests done and got the results today my B12 level is 136. I'm not an expert but what i have seen on the internet this is very low? I start my 6 injections on Monday and looking forward to it.

In the mean time all this was going on i have been on more anti-depressants than i care to remember, pushed away most of my friends do to feeling ill all the time and missed most of my teens and early twenties.

So yeh :(

20 Replies

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  • Dear Dan 91,

    You have come to the right place. You will get lots of help here. Yes ,your B12 level is low, as you have more than likely had the B12 serum test, which is notoriously inaccurate and contains the active and inactive B12 . Have you been tested for antibodies to the intrinsic factor? You should be, as this test would reveal if you have pernicious anaemia. You should also read the book" Could it be B12?" or read Martyn Hoopers books(Amazon) Many people are falsely diagnosed with depression when they are actually suffering from B12 deficiency. There are some really knowledgeable people on this site who will answer your questions better than I can. But I wanted to reply to you as soon as I saw your question. The pins and needles are typical symptoms of B12 deficiency. ( Ihave them in my feet!) I feel sure that you will improve no end after your injections, but if you have Pernicious Anaemia you will need them for the rest of your life. If this is so, you will be offered only one injection every 3 months. This may not suffice, and then you can find out on this site how to self-inject. It's amazing how ignorant doctors are about P.A. But from what you say, it seems that is what you have.

    You will get lots of help from people who know a lot more than me. I wish you all the very best.

  • Dan, ask your GP to do a thyroid function test too. Low thyroid isn't uncommon with B12 deficiency and can cause significant depression. I hope the loading injections help you feel well soon.

  • Hi Dan,

    You should never have been stopped getting B12 injections, once you are deficient, treatment is for life.

    Glad you are getting treatment now, and make sure serum folate is tested and if necessary you get any def there also addressed. Both B12 def and folate def are associated with depression and pipolar, many other (B ) vitamins also are needed. Taking a good multi (B) vitamin may help to make sure you get all you need in the right balance.

    Kind regards,

    Marre.

  • Firstly I think you need to know what is happening to you - the word 'anaemia' is very misleading.

    The problems you are suffering from are related to a b12 deficiency and not anaemia.

    B12 is needed for several metabolic functions. That is, it is needed to make sure DNA synthesis (cell regeneration) takes place. It is needed to make sure your nerves are coated properly with myelin (the insulation around nerves) because if they are not coated then the nerve (which is an electrical system) starts to misfire and eventually it will burn out.

    It used to be thought that the anaemia appeared first - which is why people think patients die of the anaemia. For the most part they do not.

    The anaemia is a direct result of the DNA (cell regeneration) already going wrong. The anaemia is not a cause of your neurological or cellular problems.

    In many people the anaemia is masked, usually if the patient has an iron deficiency or is taking a folate supplementation (even multivits will do this) so many patients do not get their b12 deficiency picked up until the neurological or cellular dysfunction is advanced.

    Because of the functions b12 is necessary for it usually problems usually follow a path that are, in the main, related to neurological (physical problems) or psychiatric. Although you do see that patients with mainly psychiatric symptoms will also have some neurological and vice versa.

    What you need now is the correct treatment to reverse 'your' symptoms - not treatment which has been suitable for anyone else. You may be speaking to people that had relatively 'minor' neurological symptoms for instance and it took relatively smaller amounts of treatment to reverse their problems. But all b12 deficiencies are not alike.

    I'd just like to say that for a 23 or 24 year to be diagnosed with mental health disorders when being denied treatment for an illness which causes mental health disorders - and is reversible if caught early enough - is absolutely and utterly disgraceful.

    I have no doubt there are many, many more like you. And it sickens me to the pit of my stomach that the 'professionals' reaching these diagnoses are, when it comes to understanding b12 deficiency, borderline retarded.

  • Can really sympathise with you. I'm 54 - was told 2 years ago that my B12 was low but implications weren't explained to me. Last year I started to read up on B12 and could see that a lot of the symptoms had been creeping up since at least my late 30s - possibly longer (because B12 is stored in large quantities in your liver it can take years and even decades for the deficiency to progress).

    Tried going to see the GP about it in May but just got dismissed and he wanted to put me on anti-depressants ... I was getting treatment but it really wasn't enough ... so I went away and started self-supplementing at really high doses using a nasal spray. At that point my balance was really bad but within 2 weeks I was quite happy going up a ladder and purchasing there to prune my grape-vine. I suffered bouts of depression on and off most of my life so wasn't expecting to find that a few months on from starting to self supplement I actually didn't feel depressed at all and I was coping a lot better with anxiety ... which sort of makes me think that some degree of problem has been there since I was about 10.

    I seem to need about 3mg of B12 a day - somewhat different from 1mg every 2 months which was what I was on when I went to see the doctor.

    I think it is really tragic the way B12 is overlooked and, although it probably feels as if it all took a long time to sort out I'm really glad that for you it got sorted out relatively early compared to myself ... and I'm glad that I've managed to sort it out myself even at this late stage.

  • I'm 24 and ended up a bit like you, dropped out of uni with a year to go. Tired all the time, And I also randomly burst into tears infront of people and seem to cry a lot in general all the time along with loads of other weird symptoms. I'm b12 and iron deficient, not pa though, but I've been getting injections all year and feel much better, the crying all the time seems to be the slowest to go. I've also been given folic acid and an iron infusion, the infusion was a great kick start.

    I also know someone whose aunt was institutionalised with some sort of psychosis for years and they've only found out now it's pernicious anaemia. Even worse it seems to run in their family and no doctors ever twigged that she had the same thing.

  • Hi everyone, i would like to thank everyone for the overwhelming positive replies.

    I assume it was the serum test yes although i'm not 100% sure. The doctor said she was not going to do the intrinsic factor test as she was going to put me on the injections for the rest of my life anyway, do you think it would be worth getting her to do it anyway? Apparently you cant really have it done after you start the injections though?

    I think i do have depression and anxiety to some degree but i feel that if a lot of the symptoms of the deficiency go then my mood should go up and i could deal with whats left. Ill take a look at that book :)

    The doctor did a thyroid function test and didn't mention it yesterday so i assume it was normal. I also had a folate test although the doctor could not find the results on her computer system so is chasing it up with the lab and told me she would write a prescription and get reception to contact me if it is low for me to go pick it up.

    Being 19 i don't think i understood how important it was to continue the injections and that's why i didn't push the new doctors to continue them. I don't really remember a lot from when i was 19 due to being on so many different medications and SSRI withdraw and what looks like now looking back also B12 deficiency.

    Poppet11 they didnt mention my blood although i did have a full count done so maybe it isnt visable in my blood yet i guess? Thank you for your post though and i 100% agree with you and it annoys me to think their are other young people suffering from this and some may not even have the money to go and pay for therapy or whatever privately. it really upsets me and i hope doctors get their ass in gear.

    One think i have also noticed once you have a mental health disorder on your file some doctors not all stop listening to you and think your just insane and its in your head. This is something i experienced with one and it really got to me. I really do hope that doctors get more up to date with current research.

    Ill have a look at getting one of them nasal spray's after i have had my introduction injections and see if it helps me thanks :)

    Id like to point out i missed a few things out writing this last night as i was a bit emotional i forgot to add i have the typical gastro problems that people seem to report too. Bloating, sometimes my stomach swells up and i look pregnant and i either go constipated or get diarrhea.

    I also get dizzy feelings and feelings like everything is going in slow motion and sometimes that im kind of observing myself from inside my head. I am really hoping that these injections start to help me on monday.

    Again would like to thank everyone for your replies :)

  • Personally I wouldn't push for the IF test - it rules out one cause of B12 but doesn't really narrow things down. Its a shame that a lot of the guidance seems to assume that malabsorption is most commonly due to auto-immune responses but I'm not entirely convinced.

    The treatment is currently the same whatever the cause ... though may be one day people will identify different forms of B12D and they will have different treatment regimes and may be having real stats available on incidence of different causes/types will become important but in the absence of studies like that not sure that actually having the test resolves anything. The results can be a bit difficult to interpret anyway and there is a fair chance of getting a false result, and may be that gets worse if you have started using B12 ... because logically I really don't understand why presence of antibodies would be changed by supplementing with B12 but then I'm really not an expert.

    Know there are others that won't agree with that ...

  • Yeh ive decided im going to keep my mouth shut about the test as i have done more research now and it seems if it comes back negative i might have more problems with the doctors as she wanted to give me the tablets anyway but i reused anything other than the injections. Got my first one in the morning at 8:15AM and actually looking forward to it.

    Would you recommend i push for a referral though to a hematologist and or neurologist though after mentioning all the symptoms i suffer from?

  • Personally I wouldn't push for a referral if you are have started receiving the injections - it brings another person into the equation and the chances are that it will bring another person who really doesn't know as much about B12 deficiency as they should into the equation.

    However, that's me personally. Definitely worth bearing in mind though as believe that the NICE recommends that sufferers should be referred if their symptoms return before loading shots ...

    I think it is worth mentioning that you have problems with pins and needles which may indicate that you have neurological problems - in which case the protocol would be injections every other day (which would mean 3 a week) until the symptoms stop improving followed by maintenance shots every 2 months.

  • Yes IF test is only 50% sensitive. I have just got a negative result back so fully expect another GP battle when I go back for more B12 as they were never keen giving it to me in the first place despite overwhelming evidence of specific and non specific b12 def symptoms.

  • Yeh as i replied to gambit ive decided to keep my mouth shut about the test as she wanted me to have tablets rather than injections anyway so if it come back negative she might stop then and give me the tablets :(

  • If we look a little closer at what Gambit says about the IF test and how doctors misinterpret this as significant.

    Doctors believe that pernicious anaemia is a disease of the blood and primarily an anaemia which can be fatal.

    They also believe, for the most part, that b12 deficiency is a milder or preceding form of pernicious anaemia. That's usually why they treat us like second class citizens.

    Yet PA - defined by the anaemia and the lack of intrinsic factor or instrinsic factor antibodies can, because of the way it comes on, actually result in LESS neurological and cellular damage occuring.

    No one knows why the IF disappears or why IFAs appear (although we know the tests are unreliable) but if this happens the symptoms appear to develop quickly.

    Although we do have another problem with this (ie in that many patients with functional PA show neither the IFs or anaemia) the ones that do show the anaemia are the lucky ones!

    If you go to the doctors with fatigue etc and get a full blood count done and that blood count reveals anaemia, then that will be checked out and, if you are b12 deficient, they most likely will check your IF. Although it makes not one hoot of a difference as to treatment, as least you will get the treatment no arguing. You are a patient with PA!

    Someone else may have a cause of b12 deficiency which takes years to develop but for one reason or another it will not present as anaemia in blood tests. Meanwhile that cellular and neuro degeneration is going on, albeit possibly more slowly than in PA, underneath the surface.

    Meanwhile that neuro degeneration can be permanent. Yet still doctors are waiting for the anaemia.

    Even if they find the b12 deficiency (usually after a few years of messing around) many patients still struggle to get treatment in sufficient quantities to reverse their symptoms because a) they did not have anaemia and b) they do not have PA.

    Rock and hard place.

  • So had my first injection this morning, i forgot how much the b12 burns as it goes in. I really don't mind needles and the needle wasn't the worst part it was the b12. Anyways after getting home i felt worse honestly i had a headache and felt dizzy. I had something light to eat and a pain killer and went back to bed to try and sleep it off. I woke up about an hour ago and feel a bit better apparently i have more colour in my face now than usual and i feel a bit more alert than usual. Don't feel great or anything just slightly better than what i did. Hopefully each injection will make me feel a bit better than the last and if that's the case ill be happy.

    I mentioned to the nurse that i had been reading the BMJ and it recommends it for 3 weeks and then 2 monthly if you have nero symptoms so she has wrote that i said that on my notes and a doctor will comment. A doctor has to do my injections next week anyway so i can follow up on it then as the nurse wasn't available to do them.

    I also managed to look over and glance at what my b12 reading where in the past as she was filling in forms on the PC.

    2010 about 2 weeks after my loading dose >1500 is all it said i guess it went off the scale?

    2010 not sure of the date but it had dropped to 450

    2012 when it was "fine" it was 280 something

    and then this year as i said above it was 136.

  • Initally I used to get hot and flushed with headache very tired some 4 hours after B12 jab, its much less now, so hopefully you will just feel better and better soon. Make sure you look after your self now eat well, drink no or little alcohol, and rest, give your body time to get all sorted that has gone wrong with out enough B12. Ask the nurse to warm up the ampoule of B12 (hold in hot hands) and inject very slowly can take a lot of the sting away.

    Kind regards,

    Marre.

  • So glad you got started and have noticed a positive benefit already. Alertness was the first thing I noticed. My hubby commented on that and my improved colour shortly after starting injections. Since then loads of people have noticed a difference. My skin colour is noticeably much better.

  • So the doctor didn't care about the BMJ guidelines it seems. Whats the best way to get them to acknowledge you should be having it every other day until its not longer required and then it should be suited to you how often for maintenance?

  • Sorry i also just realised i was posting on another account. I would like to point out that Danny91 was me!

    Also this is a copy of my blood from 2013, i think i should have been on the injections and folic acid back then?

    i58.tinypic.com/2imakgh.png

  • Hi,

    Had a look at your blood test from 2013, your serum B12 and folate were still in the "normal" range, not in the labs deficiency range as far as I can tell. Both are not high, but still normal and that means many NHS GPs will not treat you as you were not registering deficient, until you did register def this year. But with your history of already having been on B12 injections for deficiency to then after treatment having your injections stopped because your serum was high (naturally after B12 treatment), these should never have been stopped and the big drop over the years in your serum B12 should have rung alarm bells.

    The new British Society for Haematology (BCSH) guidelines imply, I believe, that with serum B12 results being at the low end, in the so called grey area , one should have further tests such as active B12 and MMA, and if one obviously (to your GP) has neurological issues associated with B12 def then treatment should not be delayed, blood taken for storage and injections started. But this is all to late for you, you are now deficient again and back on treatment.

    I think you may be confusing this with the BMJ article. The BMJ is just an article not guidelines, as far as I know . This is the article: bmj.com/content/349/bmj.g5226

    Guidelines are just that, they are not law so if your GP thinks otherwise then that he can do, he/she may be expected to explain him/her self but that is all I'm sure.

    These are the new BCSH guidelines, see:

    British Society for Haematology Guidelines for the diagnosis and treatment of Cobalamin and Folate disorders

    bcshguidelines.com/document...

    C. Treatment of cobalamin deficiency

    Current clinical practice within the U.K is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form (outlined in the British National Formulary, BNF, medicinescomplete.com/mc/bn... Standard initial therapy for patients without neurological involvement is 1000 g intramuscularly (i.m.) three times a week for two weeks. The BNF advises that patients presenting with neurological symptoms should receive 1000 g i.m. on alternative days until there is no further improvement. However, the GWG recommends a pragmatic approach in patients with neurological symptoms by reviewing the need for continuation of alternative day therapy after three weeks of treatment.

    Maintenance treatment for patients presenting without neurological deficit is with hydroxocobalamin 1000 g i.m. every three months. Those with initial neurological deficit should receive hydroxocobalamin 1000 g i.m. every two months. No further testing for cobalamin levels is required. Although there is little evidence that more frequent dosing is harmful, specific objective studies demonstrating clinical benefit are absent, and the GWG cannot make specific recommendations.

    I hope this makes things clearer for you, not that it will help you much, and I can not give you a straight forward answer to your question:

    "Whats the best way to get them to acknowledge you should be having it every other day until its not longer required and then it should be suited to you how often for maintenance?"

    Perhaps read this post for some inspiration:

    healthunlocked.com/pasoc/po...

    See how you go on your GP's treatment and if not optimum then ask to see a specialist, if that results in nothing then learning to self treat is all I can suggest.

    Kind regards,

    Marre.

  • Hi everyone thought id just update you, i went to the walk in surgery this morning and after talking to the doctor and mentioning the new guidelines she thanked me for pointing them out and they are indeed in the new BNF book (She made a point to bring it up and tell the other doctors in the next clinical meeting). She has agreed to continue my injections reviewing them every couple of weeks (Checking if my arm is getting any better and not worse) . She has also refereed me to gastro and given me some folic acid and iron tablets to help with taking b12.

    My folic acid results are still lost however she has said we will do more folic tests after being on the tablets for a little while.

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