Back to the Doctors again.

[markhobson]

Hi Everyone, my name is Mark, I'm 47yr Old and was diagnosed with low B12 two years ago. Was always tired, tingly feet, spaced out all the time. My initial B12 count was 140, I was given a loading dose over several days, then once every 3 months. I went back to my GP after a year and told him still tired etc and he put me on injections every 10weeks. I am still virtually the same, I think I sleep fairly well but still wake feeling tired and am constantly yawning throughout the day, still getting pins/needles, hot feeling in feet but more recently seem more irritable/bad tempered. And feel stressed out maybe also a bit of depression.

I'm booked in again to see my GP tonight to ask him if I can be referred to see if theres anything else wrong. Think I may also ask for all my previous test results as I have never seen them. Dont like to bother GP as I know there always very busy, but really need to find out more about this. Do you think this is a good thing or should I just plod on as I am. ?

[cc120]

Hi Mark, I also didn't like to bother the GP and didn't see the need to ask for a copy of my blood tests, as receptionist always stated 'normal'. After over 7 years of similar symptoms as yourself (no pins & needles though), I finally requested a copy of the last 10 years of blood tests to show a Endocrinologist and posted results on this forum. Even though within range, B12, folate, calcium, iron, ferritin, all low and advised on the forum to supplement. TSHm again though within the acceptable range before NHS recommended to refer to specialist, TSH 8, still high and accompanied with all the symptoms: fatigue, dizzyness, nor-energysing sleep, I should have been offered treatment years ago. Also advised on here that B12 injections are the surest, fastest way to increase B12 levels. Need to also add 5mg of folate a day for approx 3 months, and keep a check on potassium levels, as both can be depleted with high levels of B12. I have Private Messaged you regarding sources for B12 injections.

[Gambit62 Administrator]

Symptoms of B12D are similar to symptoms of other conditions and unfortunately absorption problems can go hand in hand with other conditions so it is a good idea to get checked out periodically as well.

People respond differently to treatment ... because people do respond differently to treatment and it isn't a cure. It is, unfortunately, very far from common for people to find that they still feel washed out and tired after the injections and need to supplement but most GPs don't seem aware of that - though the fact that you managed to get yours to put you on 10 weeks implies that they may be more sympathetic than most (and have recognised that you have neuro problems - though actually that means that the correct loading regime would have been every other day until your symptoms stopped improving but ...).

B12 itself can lead to depression though a caveat - usual treatment in UK for depression is SSRI's and these can actually affect B9 (folate) levels and make the B12D worse.

My experience a few months ago was going to GP having had blood tests done which showed nothing else going on and wanting to talk about B12 but being told it couldn't possibly be B12 because I was receiving shots. He just wanted to put me on anti-depressants and told me everything was depression when I knew in my soul that it wasn't. To me depression is have ability to do but just don't want to whereas with the B12 it was want to but just can't get the co-ordination etc together. Went home (had a rant on here) and started taking large doses of a nasal spray and was surprised to find out just how quickly that sorted me out - went from scarcely being able to walk because I felt so wobbly to being able to perch quite happily on the top of ladders and prune my grape vine in the space of about 2 weeks. Experience of last shot was that I reduced dosage of nasal spray but could feel some of the symptoms coming back so have upped it again and guess I will continue with it at the doses I'm taking - notice the psychological effects more and suspect that I had probably been suffering those for years as I have a long history of depression. I still get very stressed (work bad at the moment) but I cope better with it and find myself feeling stressed rather than depressed these days.

Haven't been to see my GP since - shots done by the practice nurses and don't really want to see the GP if I can possibly help it

Hope your experience is much more positive and that you get confirmation nothing else is going on and manage to find a suitable way of upping the levels so you aren't condemned to being a living zombie.

[Hidden in reply to Gambit62]

What was the nasal spray that you used, was it b12?

Also are there different types of injection for b12D that can be used?

[Gambit62 Administrator in reply to Hidden]

Nasal spray I use is this one

detoxpeople.eu/index.php?l=...

There are 4 artificial forms of B12 - cyanocobalamin (used in US and most of North America), hydroxocobalamin (used in UK and most of Europe), methylcobalamin ... and can't remember the name of the 4th but it isn't very stable. methylcobalamin is the least stable of the main 3 forms and breaks down much quicker. Some people do use it as it seems to be the best for repairing nerve damage when it has occurred.

Guess you are still struggling with the hives and trying to find possible alternatives.

Best thing would be to discuss with your GP and look at if you are having a reaction to any of the other ingredients in the injections you are receiving, though they tend to be pretty standard in manufacture so suspect that if the problem is an part of the contents of the phial that it is always going to be a problem, though it could just be that your immune system is kicking back in and it will go as things pick up but know it's painful and I'm totally with you on looking for options that don't involve that pain.

Have you tried reading 'Pernicious Anaemia: The forgotten Disease'

amazon.co.uk/Pernicious-Ana...

Has a lot of information and details of some studies etc.

[Waen]

Bother your GP! That is what they are there for.......its what their job is and what they are paid for! Luckily my GP could be bothered and listened - when I was called in for the results the other GP began with 'Dear Dr B. He has been at it again and now we will have to treat you.......................' FFS!!!! IMO Thank you Dr B

Seriously go back and talk to your GP

[Hidden]

Info on where to source B12 injectables etc see:

pernicious-anaemia-society....

[cc120 in reply to Hidden]

Cool.

[markhobson]

Thanks for the replys guys. Went to see my GP this evening, told him still feel like crap, hes now requesting further bloods on 20th August. As he says, to check to see if something else could be causing this.

I asked for copies of my previous blood tests but the ones he gave me only seem to contain actual B12 readings and Serum Folate levels.

My first B12 reading September 2011 was 140ng/L

I was given loading doses then put on injections every 12 weeks, I was checked again in December 2011, my B12 then was 1082ng/L and Folate was 7.1ug/L, I think it was the middle of 2012 that he then put me on injections every 10 weeks.

I had bloods done again September 2013 - B12 was 534ng/L , Folate was 7.2ug/L

Need to wait now and see what next tests find if anything.

Mark

[markhobson in reply to markhobson]

Also noticed more recently that I seem to be walking into things, misjudging my surroundings somewhat, just tonight as I left the house to go to docs, as I went around the corner of the house, I turned too early and banged into the brick wall, i've done this a few times now but had just put it down to the tiredness, I mentioned this to GP but he didnt really say that much, just kept tapping away on his keyboard.

[cc120 in reply to markhobson]

Hi Mark, I would suggest asking tests for the following or as many as you can get of them:

1.Thyroid Peroxidase Antibodies (TPOAb)

2.Thyroglobulin Antibodies (TgAb)

3.TSH

4.FT4

5.FT3

6.B12

7.Folate

8.Iron

9.Ferritin

10.Vitamin D3

11.Calcium

12.Magnesium

13.Zinc

14.basic pituitary hormone function tests.

The hormones that can be tested via a simple blood test include: cortisol, thyroid, prolactin, oestrogen, testosterone and growth hormone.'