Thyroid and vitb12 anaemia

[monroe7986]

Ok so I have found out that I have a bit b12 deficiency anemia and the dr also mentioned something about having antibodies

He didn't really explain anything about how the lack of this vitamin can affect my thyroid my body or any symptoms associated to it and he as since referred me to someone to look at my digestive/stomach etc.

What I'd like to know is how long will it ale for me to be seen by the specialist.

I am also very tired and lethargic, have headaches, foggy head finding it very hard to concentrate and forget everything including the simplest of words.

My chest hurts , joints etc hurt when I move,breath etc and just don't feel right at the moment.

Anyone any ideas of how I can help my symptoms

Regards in advance

[Hidden]

Hi monroe7986,

Is your doctor not treating you straight away? Correct me if I'm wrong, but I'm assuming you're saying you have positive intrinsic factor antibodies? This would mean that you have autoimmune pernicious anaemia. You will get lots of help and advice here:

b12d.org/

And here:

pernicious-anaemia-society....

There is a £20 joining fee for the PAS, but for now you can read much of the website for free, including the forum which is packed full of other people's stories and experiences, as well as lots of links to research articles. This is a good place to start:

pernicious-anaemia-society....

There are also 2 excellent books:

1) Could It Be B12? An Epidemic of Misdiagnoses - Sally Pacholok & Jeffrey Stuart

2) Pernicious Anaemia: The Forgotton Disease - Martyn Hooper

It is good that you are getting referred (to a gastroenterologist I assume)? BUT you should not have to wait for treatment, your GP should be doing this now if you have been diagnosed. Standard treatment in the UK is a loading dose of 6 B12 injections over 2 weeks, followed by a maintenance jab every 2 or 3 months. Here is a list of symptoms from the PAS website:

pernicious-anaemia-society....

B12 deficiency is very common amongst those with thyroid disease, this study suggests 40% in primary hypothyroidism:

ncbi.nlm.nih.gov/pubmed/186...

Hampster

[monroe7986 in reply to Hidden]

Thank, I will defo look at the sites, my dr has given me vitamin b 12 tablets and I'm just waiting for my appointment with the gastro specialist.

Still can't fathom why my Dr not really said much about the condition, I would never have known if i wasnt under the hospital for my acne where I have to have bloods which showed I was anaemic I just thought my levothyroxine wasn't working being so pooped all the time

[Hidden in reply to monroe7986]

I'm assuming the tablets are cyanocobalamin - do you know what strength they are? This is not the right treatment to correct a B12 deficiency caused by pernicious anaemia. The whole point is you cannot absorb B12 in your stomach, so giving you tablets is about as useful as a tube of smarties. I think there is some research that shows about 1% gets through by "passive diffusion" but this would not be enough to correct a deficiency unless you were taking very high doses. And even then, I know from personal experience that the injections provide more relief from symptoms. Finally, cyanocobalamin is the least active form of B12 and has to be converted numerous times before it is usable, it is also attached to a cyanide molecule that your body has to get rid of.

This is the NICE guidelines for treatment of B12 deficiency:

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

You should be having IM hydroxocobalamin (B12) injections, not cyanocobalamin tablets. The tablets are only recommended for people with a pure dietary deficiency, and I quote from NICE:

"Be aware that oral cyanocobalamin is suitable only for the small number of people with proven dietary deficiency of vitamin B12. It is available on an NHS prescription only for a person who is a vegan, or who has a proven vitamin B12 deficiency of dietary origin, and the prescription must be endorsed 'SLS' (Selected List Scheme)."

Yours is not dietary, and if I were you I would be printing off the NICE guidelines and taking them straight back to the doctor, and insist on the correct treatment.

The same information on treatment for pernicious anaemia can be found in the Patient UK professional reference article under the section Management:

patient.co.uk/doctor/Pernic...

I keep reading more frequently about doctors given out tablets only and I find it very disturbing, you must challenge this treatment.

H x

[helvella]

You might have intrinsic factor antibodies and/or gastric parietal cell antibodies.

The Pernicious Anaemia Society has a lot of information - if you can afford it, join both Thyroid UK and the PAS.

thyroiduk.org.uk/

pernicious-anaemia-society....

Pernicious Anaemia (the common name for B12 deficiency anaemia) causes many symptoms including breathlessness and nerve damage. You and your doctor need to get going on treatment as soon as possible. Normally, treatment in proved cases is injections of vitamin B12 (in the form of hydroxocobalamin), and these are likely to be required very frequently to start, and less frequently for the forseeable future.

Rod

[monroe7986 in reply to helvella]

Thank, I will defo look at the sites, my dr has given me vitamin b 12 tablets and I'm just waiting for my appointment with the gastro specialist.

Still can't fathom why my Dr not really said much about the condition, I would never have known if i wasnt under the hospital for my acne where I have to have bloods which showed I was anaemic I just thought my levothyroxine wasn't working being so pooped all the time

[Marz in reply to monroe7986]

...probably because he doesn't have the time or the inclination. Anyway don't worry about the GP - Hampster and Helvella have given you EXCELLENT advice - so give yourself some time to read the relevant sites - and then you will know more than your GP.......

[Marz]

...also wondered how your thyroid blood results are looking ? Do you have recent results with ranges ? When you are hypo everything slows down including the activity within the cells of the stomach wall - the parietal cells - which secrete the intrinsic factor. This binds to the B12 to transport it safely to the absorption spot - mostly in the terminal ileum.

It could be that things may improve for you when you are being optimally treated for your thyroid. Do you have Hashimotos ? Auto-immune again. VitD - levels ?

Hope you soon feel stronger........