Hello...and sense check

[Goldendoodl]

Hello - I'm a newbie here. Have had a poke around and it's lovely to be able to join such a supportive (and knowledgeable!) community.

I've written and discarded this post a few times - I'm the world's biggest procrastinator - and don't really know where to start but here goes...

There's an incidence of autoimmune diseases in my family (brother and aunt have Hashimoto's; sister has MS (is this an autoimmune condition? I'm not sure...), vitiligo and hypothyroidism. We also seem predisposed to mental health problems - although it's obviously difficult to determine how much can be attributed to nature, and how much to nurture.

It wasn't until my mum happened to mention that my great-grandfather had pernicious anaemia that I began to wonder if the symptoms I've been experiencing for the last few years could be due to this condition. However I'm not sure if this is too distant a genetic 'link' to be considered pertinent.

I've been experiencing pins and needles in my fingers, periods of lightheadedness/dizziness, migraines/headaches, digestive issues, cramping in my calves during the night, swollen glands/sore throat, breathlessness, lack of energy, mouth ulcers/cracked lips, sore/burning tongue, restless legs, itchy skin, Reynaud's phenomenon, periods of intense irritability (pretty out of character), mood swings and cognitive issues: I feel like I have to concentrate intensely to accomplish tasks that were previously almost unconscious and routine. Weird as it sounds the other day I couldn't remember how to put duvet cover on the duvet! I'm also finding myself struggling increasingly to 'find the right word' if that makes sense?

I've had numerous blood tests over the years and the only measures that have ever come back as being of concern are my iron levels and white blood count (low). On top of this I've not been allowed to donate blood on a couple of occasions because of my iron level (although I appreciate that ranges used by NHS Blood Donation are perhaps more sensitive than those used in other situations). In the case of the former I was advised to take a course of iron tablets. Each time my white blood count has been low the GP has sent me for re-tests until the value comes back as being within normal range again.

As far as I can see it there are a couple of issues here:

1) Many of my symptoms could be attributed to my mental health diagnosis (depression and anxiety), or dehydration (recent heatwave in the UK): in fact the latest batch of blood tests the GP sent me for were to investigate my hydration levels, amongst other things. At the same appointment he increased my dose of antidepressants.

2) In the same way that the results of some of my blood tests seem to fluctuate between being within normal range and outside of range, some of my symptoms come and go. For example I don't have pins and needles now but had them every day last week. Can this happen with pernicious anaemia or would symptoms be constant?

I feel like I'm wading through treacle trying to solve a puzzle that perhaps doesn't exist. Maybe it's all in my head? All I know is that I don't feel 'well' (whatever that means!).

Whilst no-one wants to be ill it would almost be a relief to receive some kind of diagnosis as at least then I would have an explanation for the way I feel.

Sorry - am rambling now. If you've read this far thanks for listening - it feels good to get it all off my chest!

[fbirder]

Yes, your symptoms do sound a good match for a B12 deficiency. But I’d have thouht you would have been tested for it. Do you know what the results were? If not, ask for them. They are your results and you’re entitled to have them.

It’s possible that you have been tested for serum B12, which is notorious for being neither precise, nor accurate. Many people test ‘normal’ but still shows signs of a deficiency.

I would go back to the doctor and show them this NHS document...

hey.nhs.uk/wp/wp-content/up...

Even if you do test normal...

Results just above the lower limit of normal (115-150) in the face of strong clinical suspicion of B12 deficiency should receive a trial of therapy with response assessment.

You should also ask to have your MMA tested. Methylmalonic acid is a chemical used up in one of the reactions mediated by B12. If there’s not enough B12 getting into the cell then levels of MMA build up in the blood.

Don’t take any B12 supplements before getting further blood tests as it can skew the results.

[Goldendoodl in reply to fbirder]

Thanks so much for taking the time to reply fbirder - I really appreciate it.