Now diagnosed with PA

[Showgem]

Since my first post on here I've been diagnosed with Pernicious anaemia as the cause of my very low b12 level (58) I received my 6 loading doses and was told they would be every 3 months thereafter. As I had some of the neurological problems I asked if I could have more of the loading doses, the doctor I asked said they'd need to see what my b12 level was now to see if I still needed them, this was only 8 days after the last loading dose so I said of course they would be high but he insisted.

The next week I saw the doctor who originally thought to test my b12 levels, as expected my level was high, I showed her the guidelines I was kindly given on here and she agreed to discuss it with the practice manager. They agreed to give me another 6 loading doses, the doctor has been monitoring my improvement, saying they don't want to give me any more than I need as they don't want to overdose me. I pointed out that that shouldn't happen as it's water soluble etc (as seen on this site) she wasn't convinced but is obviously trying to do her best for me. I have other health problems including osteoporosis and tested low in vit D, my doctor said she has 2 or 3 other patients with PA and these symptoms and she is trying to find out how to treat us, as I am intolerant of alendronic acid and the calcium tablets give me constipation. I've been taking vit D tablets and she sent me for another dexa scan and it's shown that the bone density in my spine has worsened but at least she is on our case so I'm hopeful.

[Gambit62 Administrator]

tell the GP to look up the treatment for cyanide poisoning if she is concerned that they are going to overdose you. (equivalent to 5000 shots administered over 15 minutes intraveneously).

And also let her know that, whilst high serum B12 is an indicator of kidney and liver function problems it is a symptom of the problems not a cause.

[Showgem in reply to Gambit62]

Thanks for that information

[clivealive Forum Support in reply to Showgem]

Also get your doctor up to speed on the latest B.N.F guidelines:

bnf.nice.org.uk/drug/hydrox...

For Adult

1 mg every 2–3 months.

Pernicious anaemia and other macrocytic anaemias without neurological involvement

By intramuscular injection

For Adult

Initially 1 mg 3 times a week for 2 weeks, then 1 mg every 2–3 months.

Pernicious anaemia and other macrocytic anaemias with neurological involvement

By intramuscular injection

For Adult

Initially 1 mg once daily on alternate days until no further improvement, then 1 mg every 2 months.

Point out the highlighted bits.

Was your Folate level tested?

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

I wish you well.

[Marz]

Having read your previous post and considered your other conditions - I am wondering if you have had your thyroid correctly tested ? PA is auto-immune as is Hashimotos - auto-immune Thyroid and the two conditions can run together. Being diagnosed with fibromyalgia could suggest a low T3 - the most Active Thyroid hormone and rarely tested within the NHS - SIGH !

I was diagnosed with Fibro in 2000 and then Hashimotos in 2005. I also have B12 deficiency after several surgeries for Crohns and Gut TB ... so have had to learn the hard way and from the knowledge of others who know more than me Having the Thyroid condition correctly treated can make a BIG difference to your health - not immediately - Rome was not built in a day ...

[Showgem in reply to Marz]

I've never been tested for thyroid problems, I will look into it, thanks

[Marz in reply to Showgem]

thyroiduk.org

On the above website you can click onto About Testing - to see the companies that send out Home Testing Kits. Used by thousands on Thyroid UK here on HU so the correct testing can be carried out that the NHS will not do ...

[Cherylclaire Forum Support]

Really glad that your GP is trying to help you, and she won't have to look far to find out that B12 has no harmful effects. Stichting B12 Tekort report under Pinned Posts (right- hand column) could be useful.

I also have osteoporosis in my spine. If you have not already had these checks, get your GP to test your ferritin and folate levels. These are often low-range or below, and work best for you if in upper 1/3 of range. GP checks my levels and relates both my hair loss and bleeding gums to low levels rather than B12 deficiency. She sees my sore mouth as being a visual indicator of my B12 status. This is why it is really useful to get a GP who is wholeheartedly aiming to get improvements for you, and staying with one GP means they should recognise improvements or deterioration quickly.

You were very low in B12 and it will take time.

There is a lot of support available here and also Pernicious Anaemia Society is worth joining if you haven't already- useful advice for you and your GP !

I took Marz's advice and had a full panel thyroid check (6 blood tests by post) - B12 and other deficiencies can make your thyroid struggle.