Just a quick question

I am sitting here not knowing what to do with myself my legs feel like they are alive I don't know what to do with them, they ache, I keep getting sharp pains in them, my feet are sore and my hips hurt also my hands and arms ache and my neck and shoulders hurt, is this all to do with PA and an underactive thyroid which I have, the thing is the aches and pains never go away and I thought they would, I don't know if this is neurological as I have had the pains in my arms and legs for a year and my arms and hands for two year.

Is this all to do with my PA and thyroid?

7 Replies

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  • Hi,

    I only have PA and no never had PA causing any specific pains...only severe tiredness, fog, weakness, weightloss, loss of balanse etc.

    What you have may be more than only PA, hypothyroid..

    Sorry I can not be of any help realy,

    Kind regards,

    Marre.

  • Hi, sorry you are in such pain, it does sound like my own pain, etc., experience when deficient in B12. I'd like to refer you back to my post to you, here's the link:

    pasoc.healthunlocked.com/qu...

    and I wonder if you are in fact being treated for the PA, diagnosed about 8 weeks ago, in accordance with the British National Formulary (the doctor's Bible for treatment) information I gave you about the varying treatments for PA depending whether or not there is neurological involvement. Please check that you are having the correct treatment if not, you could speak to your GP and take a print-out of the BNF, easily accessed on:

    b12d.org/book/export/html/43

    I know that you are having trouble with your thyroid and have a pending referral to an endocrinologist, you will find lots of info before you go to the endocrinologist on the main Thyroid UK site: thyroiduk.org and about PA on the Pernicious Anaemia site, pernicious-anaemia-society.org

    It does take a while for the B12 injections to work but it is important to ensure you are having them at the correct time interval.

  • Are your symptoms the same as mine and have you got a thyroid problem as well and you are so knowledgeable when it come to PA you must have done a lot of reading about the disease (is that the right word) I didn't know B12 was so important and is Vit D important as well could some of my symptoms be related to this as well?

  • Yes, I have an underactive thyroid, now well treated though not in first couple of years, also 2011 I had around 30 symptoms of B12 deficiency, but GP full of contempt and anger as I had the temerity to show him my diary of symptoms which he refused to read...so I know what you are going through.

    So, a year ago I knew nothing about B12 but that has changed!

    Those with hypothyroidism can have malabsorption isues which can lead to B12 deficiencies.

    Yes, Vit D is important, should be around 90 in the reference range. So are folate and ferritin, both should be optimal, say, in the top quarter of the reference range, not just "in the range" or that dread item of doctor speak "your results are normal".

    If you go on the Thyroid UK you will find you have access to loads of information about every aspect of the thyroid, just explore the panels on the left.

    Please check the links I gave and make sure that you are going to have injections at the correct time interval.

  • I've just looked at my blood test results for my folate and ferritin;-

    Folate is 10ng/mL (4.0 - 20.0)

    Ferritin 10ug/L (11.0 - 307.0)

    Are these ok

  • No, your folate should be in the top quarter of the range, where as it is 6 above the bottom of the range, and 10 below the top, when it ought to be much higher, between 16 and 20.

    Good folate levels are very important as folate is used in the methylisation of B12. The form of B12 used in the UK injections is hydroxocoballmin which has to be methylised using the folate in the process. The smaller the amount of folate you have then the less hydroxocobalamin that will be methylised to be used by the body cells.

    Your ferritin (storage iron) is much too low, it is actually below the range at 10 whereas the range starts at 11. Ferritin should be much higher to provide best conditions for general and thyroid/PA health.

    The low levels of both these important items will prevent you from benefitting to the maximum from the B12 loading injections you have had and also affecting the thyroid functioning.

    Your GP must atttend to these deficiencies, to enable you too have maximum available benefit from B12 injections and relieve your symptoms, though this relief will not happen overnight.

    Please do go on to thyroiduk.org and read all the helpful stuff there, ther is so much information which enables you to maximise all sorts factors to benefit yourself. Also of course so that when you get to the endocrinologist you can understand the basics of what he/she is talking about

  • Here is a very informative article, skip the bit on the Schilling Test which is not used much if at all, but do read the section on Management and you'll find a lot relating to you and ferritin deficit and to what kind of specialist your GP should be referring you:

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

    I hope this helps you in this bad time, you really need to puch this GP into action.

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