Need advice please. Could this be the answer after 10 years!?

[Qunk]

I've just returned from the doctors after asking for a b12 test. I had a level of 247 bit was told it is normal.

I have had chronic and severe brain fog, tinnitus, chronic fatigue, strained head/headaches, along with 'fullness' of the ears, a vibrating sensation, ear aches with fluctuating deafness and a 'dead feeling' in my ear and slight dizziness for about 10 years now. My sleep is non-restorative and I get sore throats, colds and aches regularly too. It started around the time of a bad case of labyrinthitis which they have also said could be menieres but I am unsure if that was a cause or a symptom of something else. But my ear feels dead and I vibrate all through my head with strained headaches.

I have been back and forth to the GP and have been told it is due to anxiety and depression and that I have CFS although in my opinion that is all due to my illness as anyone would feel depressed and anxious. I am getting very desperate in my search which has pushed me towards non-NHS related treatment as this is ruining my everyday life and is a 24/7 issues that I cannot escape from.

Could b12 be the answer here?

How do I get my doctor to listen if so and what protocol should I follow? I feel I will have to be the one to push this as my gp won't really know but I'm overwhelmed as to what to do?

I don't know where to start. How much should I start on and how often?

After 10 years will my symptoms be permanent due to damage?

Thank you all for your time!

[pvanderaa]

Did he test folate levels also?

Some labs in the USA add a note that 10% of the population shows neurological symptoms with results below 400 pg/ml.

[Qunk in reply to pvanderaa]

No folate levels were tested no. Can I request to get straight on to the b12 injections do you think?

Should I be accompanying them with anything or will the injections suffice?

How much and how often should I be taking them?

[pvanderaa in reply to Qunk]

I had many of your symptoms. Some not as severe. I take a centrum multivitamin each nigh to ensure I get all the metals and vitamins. You may get low on some due to the rush of B12 starting lots of metabolic activities at once.

I also take 100 mg of B6 to support the folic acid with regenerating the mylin sheath on the nerves. It takes a while and the results for all symptoms is not instantaneous.

I also take folic acid about 2.2 mg. this varies depending on how hard the thumping in my ears is when I move my head.

Finally I take TMG 1000 mg a day to support metabolism of homocysteine back into methionine - which is what B12 does.

Keep a log of what you take and your symptoms relative to your jab. I'm currently on 0.5 ml twice a week of cyano-cobalamin.

Keep your doctor up to date on what you are doing and what your plan is. Hand him something written that he can hold while you are discussing your plan. It will let him know you have been doing homework and are not trying to bypass him

[Sukiwarrior]

Hello.

I was in your situation when I joined the site 20 Days ago if you want to check back and find my first post I also lost 50% of my hearing in my left ear and was diagnosed with Ménière's disease. You can also find my later posts telling my story up to today. I was one of the lucky ones and managed to get 12 loading doses and now will be getting 1 injection every 2 months from GP. But I realised I had such a bad case of B12 deficiency going back over 20 years and have been on anti depressants all that time, I am now slowly coming off the AD medication that I know I need real regular B12 so I am now injecting myself every other day and all I can say is I feel like a new woman. Even my chronic constipation has stopped, I still have tinnitus and don't think that will go, most of us on here have bad tinnitus, and my dizzy spells which were awful have been much less.

Bee.

You you should check out the sites B12d.org and buy the book Could it be B12 by Sally Pacholok I also bought Martyn Hoopers book from Pernacious Anemia org on Kindle which is also excellent.

[Gambit62 Administrator]

It can be very difficult and sometimes impossible to get GPs to listen.

I'd suggest that you try pointing them at the NICE guidelines on B12 deficiency

cks.nice.org.uk/anaemia-b12...

and some extracts from the BCSH guidelines

bcshguidelines.com/document...

some details of which sections are relevant are given in this recent post

healthunlocked.com/pasoc/po...

The result you have is in a huge grey area - in Japan they regard 500 as the borderline for treatment area.

Basically

- it is an established fact that there isn't a gold standard test for B12 deficiency

- B12 left untreated causes serious damage which, left too long can not be reversed

- current recommendation is to treat on the basis of symptoms not test results

- there are different protocols for treating where there is a neurologocial involvment (ie much more aggressive)

[Jackz]

Apparently in Japan your B12 can be just below 500 and they will treat you, im in the UK iv only just started treatment and my levels are at 167 so it just goes to show different countries treat it differently, if you feel like you do can you insist for b12 jabs where you are??

[Rory]

Have you considered getting your bloods checked using a private health provider. For different reasons I have looked into this. It may give you some answers you are seeking. Here is a link to a website I found.

healthscreening.co.uk/epage...

[Hidden]

Hi

As far as I am concerned the serum B12 blood test is absolutely useless and should be scrapped. I was diagnosed with pernicious anaemia in 2008 after being unwell for 2 years and some symptoms starting as far back as 6 years previously. I tested strongly positive for parietal cell antibodies but like you was still in the "normal" range. Then I found Martyn Hooper at the PAS and Sally Pacholok's book "Could it be B12 an epidemic of diagnosis". I have taken several years to get to the point I am at now doing my own injections weekly with hydroxycobalamin, taking a daily multi-vitamin, extra iron, extra folic acid and I take garlic just to keep the vampires away. I also am hypothyroid and have been taking levothyroxine for 20 years nearly. I still get foggy days and memory loss (but now also menopausal) and I am struggling with anxiety but that is due to family problems. It is hard but you have to go by your symptoms and not what the doctors say as they are completely ignorant about B12. You cannot overdose on it so the best thing to do is to persuade them to try it and see if it helps. I have been campaigning for years now for the government to recognise that the NICE guidelines on treatment are inadequate for some people and that the serum B12 test should be completely scrapped I think - some doctors have told me it even varies on the same day. Good luck! Persist!

[Gambit62 Administrator in reply to Hidden]

Haynes, just wanted to say on the anxiety that I actually find that if I keep my B12 levels high enough I cope much better with anxiety. First I noticed it generally but the last couple of months I haven't had the awful sickly anxiety that wasn't down to anything more than changes in hormones from menstral cycle. There's a lot of very stressful stuff going on for me at work but actually I can now switch off from it so it doesn't ruin my life and I can focus on doing things without getting bogged down in the stupidity of other things that are going on.

Bit of me that would really like to know how B12 affects my brain and why it seems to have such a big impact on my reactions to anxiety.

[I use a mixture of nasal spray and sub-cut ... but my dosage is about 3mg a day - even notice the crankiness coming back on days when I've had maintenance shots at the surgery.]

[Gambit62 Administrator in reply to Gambit62]

Sorry did mean to say that I'm peri/pre-menopausal so reactions to hormones had been getting worse and worse over last few years - though suspect B12D probably wasn't helping.

[Hidden in reply to Gambit62]

Hi that is really interesting because I definitely seem to need more B12 when stressed and I do at times increase my injections to help. We have had huge unpleasantness with our neighbours and also financial problems and it has at times made me feel really ill with anxiety. I did give myself a double shot once and got through it. There is no doubt to me that it is B12 that causes levels of anxiety/depression to change and the world is still on a very old-fashioned treadmill in that respect. I think a lot is to do with the high profits made from pharmaceutical companies on the sales of anti-depressants which I think mimic B12 in terms of adjusting serotonin/dopamine levels in the brain. When people have depression I think it is often triggered by a huge rise in stress (increase in adrenaline) which causes a big dip in B12 levels (especially if liver stores are low) and then doctors put people on anti-depressants which masks the brain symptoms until what actually happens is that the body (if it is able ie stomach functioning properly) replenishes B12 stores in the liver slowly over time. The person recovers from their "depression" is actually a recovery to a full working level of B12 supplying to the brain.

Can't understand why the scientists can't work this out - but as I say, call me cynical, but profits come first!!

[Gambit62 Administrator in reply to Hidden]

Think I understand it slightly differently and hadn't thought that serotonin might be involved. One thing that happens with anxiety and depression is that the part of the brain that deals with fear (very old bit) starts to 'short circuit' and get over-active ... so sort of think of it as a mylenisation issue. Guess it's quite probable that there are lots of mechanisms involved and it varies from person to person.

[Qunk]

Hi all, thank you for your comments. Sorry for the long delay in replying. I finally convinced the doctor to give me folate test and it is high.

So this means I have B12 of 247 and folate of 21.4.

This confused me as I assumed they would both be low. Can anyone explain please?

My symptoms are getting really bad and I am quite desperate. I am going to start some B12 but my doctor is giving me one injection every 2 weeks as a booster and then onto every 2 months. I think it is the Hydrocobalmine.

Is this the right treatment to be taking?

I am trying to read up on it all but am so confused and am struggling to comprehend it all.

Can someone please take the time to give me a step by step guide on what I should do in terms of any more tests I should be taking, what I should be taking and how often and where to get it all?

I’m sorry to ask but I find it all so overwhelming.

Many thanks in advance.

Many thanks

[Hidden in reply to Qunk]

Hi,

The normal (UK NHS) treatment is:

cks.nice.org.uk/anaemia-b12...

Treatment for B12 deficiency

How should I treat a person with vitamin B12 deficiency anaemia?

• For people with neurological involvement:

◦Seek urgent specialist advice from a haematologist.

◦Ideally, management should be guided by a specialist, but if specialist advice is not immediately available, consider the following:

◾Initially administer hydroxocobalamin 1 mg intramuscularly on alternate days until there is no further improvement, then administer hydroxocobalamin 1 mg intramuscularly every 2 months.

• For people with no neurological involvement:

◦Initially administer hydroxocobalamin 1 mg intramuscularly on alternate days for 2 weeks.

◦Maintenance dose (where the vitamin B12 deficiency is not thought to be diet related): administer hydroxocobalamin 1 mg intramuscularly every 3 months for life (standard dose). Note that the manufacturers' licence is for every 2–3 months.

But its up to your GP to decide why he/she may alter from the above recommendations.

There is not a lot of tests worth having, perhaps its more if you are having other problems like say gastric problems, then seeing a gastro may help. Or other blood problems a haematologist, or neurological problems see a neurologist. But in your case with CFS it will be far more difficult to decide. Perhaps just see how you go on the treatment offered, see if it helps you and then decide if you need more B12 or not etc. I think its the individual who knows/ feels best when what medication helps best and at what frequency will be most beneficial to that person..

I hope this helps a bit,

Kind regards,

Marre.

.