Yey i love doctors ... NOT! - Pernicious Anaemi...

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Yey i love doctors ... NOT!

leahcim profile image
11 Replies

Spoke to a doctor about my results and he said there perfectly fine and its probley all in my head :( (CBT and anti depressent dont do anything for me)

Symptoms: Dizziness, extreme fatigue, weakness, veritgo, plus many more, and loads of tests done that were normal.

what should i do guys im so stuck :( iv recently staretd methyl b12 but thats it.

B12 222 197.0 - 866.0 pg/ml

Folate 4.8 4.6 - 18.7 ng/ml

Ferritin 44 30.0 - 400.0 ng/ml

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leahcim profile image
leahcim
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11 Replies
Polaris profile image
Polaris

I'm sorry Leahcim - you've obviously researched and tried hard to find answers - is it possible to change your ignorant, patronising doctor ?

He obviously hasn't got anything in HIS head.

Maybe time to start self injecting and supplementing too, as your levels are very low with neurological symptoms that need to be treated aggressively as soon as possible.

leahcim profile image
leahcim in reply toPolaris

i doubt it, every doctor iv seen seems the same, its all mental. iv started the b12 lozenges 1000 mcg now but im thinking of switching to the spray.

wedgewood profile image
wedgewood

Dear leahcim,

B12 serum level is LOW, In Germany and Japan you would be treated if you have a value of 500. You might have success with Methylcobalamin sub-lingual lozenges(Amazon) patches or nasal spray. I had to get diagnosed by a private G.P, who foumd that I had P.A. Only injections help me, but some people get helped by the above mentioned means. Remember to supplement with folate which works together with B12. You say you have started with MethylB12 What do you mean? Tablets or what? You will get the help you need here. Best wishes.

leahcim profile image
leahcim in reply towedgewood

opps sorry i should of said in my post :P they are the methyl b12 lozenges from jarrow formulas 1000 mcg lemon. thank you so much for replying, im honestly losing hope now. iv been taking the lozenges for about a week on and off (think they make me tired) and was going to start my methyl folate 400 mcg after getting used to the methy b12, im thinking about getting the b12 spray as apparently its much better. i said to my doctor about japan and germany and he said to stop reading up on stuff ...

Gambit62 profile image
Gambit62Administrator in reply toleahcim

Your folate levels are at the bottom of the range. Without folate your body can't process B12 so think you should really start on both.

If methyl doesn't work for you then try looking at some other forms - and see if they work better.

leahcim profile image
leahcim in reply toGambit62

is Methyl folate ok? 400 mcg's . its better then folic acid iv herd?

Gambit62 profile image
Gambit62Administrator in reply toleahcim

Unfortunately it isn't as clear cut as it might seem. Some people with some genetic variations involved in MTHFR can make methylated forms of folic acid unhelpful but for others it is fine - the only thing I can suggest is trying it carefully and listening how your body reacts - if it reacts badly then don't continue.

There are two schools of thought on treating both folate and B12 deficiencies - noting Polaris post below. When the BCSH guidelines on folate and cobalamin deficiencies were introduced some of the guideance was ambiguous and appeared to be saying that a folate deficiency should not be treated until the B12 defcency was treated. Another interpretation - and I believe this is the one currently presented in a redrafted guidelines - is that a folate deficiency should not be treated in preference to a B12 deficiency, but if both are present both should be treated - and both being present isn't a matter of looking at scores but of doing a thorough clinical evaluation (symptoms) to assess if B12D is present.

The risk of treating a folate deficiency is that one effect of high folate levels is to mask macrocytosis - whch is often something that doctors regard - incorrectly - as a definining characteristic of B12 deficiency. This means that a big pointer to B12D is missed, the deficiency isn't treated and nuerological damage isn't picked up until it is irreversible.

Polaris profile image
Polaris in reply toleahcim

Personally, I don't find the 1000 mcg enough - our family find Jarrows 5000 Methylcobalamin taken sublingually effective and others find oral or nasal sprays work well too.

Re folic acid - it should never be given while B12 is very low as it gets 'trapped', cannot be used, and could make neurological symptoms worse.

"Folate is required for the synthesis of red blood cells, those tiny disc shaped cells that carry oxygen in your blood to deliver it to each and every corner of your body. However, B12 is required in a reaction that converts folate into a form usable by the body to make red blood cells. Without that, folate cannot participate in the synthesis of red blood cells. So without B12, folate is literally of no use! ". - 'The B12 Deficiency Survival Handbook', by Dr Aqsa Ghazanfar

"The body needs ample B12 in order for folate to work and one of folate's crucial jobs is to synthesise the nucleotide 'building blocks' of DNA. When folate is trapped in an unusable form due to lack of B12, it can't do this job correctly".

The haemotologist in the film on this site also gives important information on folic acid:

b12deficiency.info/b12-writ...

b12awareness.org/2014/10/01...

wedgewood profile image
wedgewood in reply toleahcim

Yes leacim, that remark about reading up on stuff is TYPICAL! I've been told to stop looking things up on the internet by my doctor. Why don't you want to self-inject? It's daunting I know. I had to drink two large gins before I could do my first one! After a year, it's now routine and I don't turn a hair, honestly! Your doctor, like mine doesn't look anything up. If he did he would have read the information from the British Medical Journal about the unreliability of the B12 serum test. Up to 80% of the B12 is unavailable to absorption. There are more accurate test methods available(but still not 100% accurate). I explained that I tried everything except injections, with no result.That's why I inject,and I haven't looked back. All the best to you

leahcim profile image
leahcim in reply towedgewood

:( im sorry about your doctor to but im so glad your better now iwth injections :D what serum b12 levels did you get before supplementing etc if its ok me asking? the internet may have some bad infomation on but theres legit sites full on valuable infomation! they think we look on quack sites lol.

wedgewood profile image
wedgewood

Yes you are right. There are bad sites of course. I was 150 thingies before I got Hydrocobalamin Injections from my G.P.. She had this info, but told me to go home and eat plenty of green-leaved vegs.and come back in 6 minths!!! So I went to a private G.P., because I felt so ill, and was diagnosed wuth P.A.(because of presence of antibodies to Intrinsic factor. My G.P. was informed of this, and then I got loading doses (but no apology for not dianosing P.A.) Subsequently, 1 injection in 3 monthe,and I started feeling inwell again---you know exhastion, dizziness, confusion,and feet very numb. So I had to start self-injecting. Since then I have felt fine! I inject once a week.and make sure that I have plenty of folate from vegs---peas, cabbageetc(B9-) Best wishes to you! Enjoy the weather while it lasts!

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