Question re further tests to be carried out by GP

At the PAS conference it was suggested by one of the speakers that I try introducing Methylcobalamin into my regime substituting it for some of my daily Hydroxocobalamin injections since I have various neurological problems and also extreme heat intolerance. My body starts to shut down in anything above 18C and all B12 symptoms are triggered at their extreme. Moving to a cool environment quickly reverses the process.

We were advised to contact Dr Chandry at b12.org, who has provided an email address for sourcing Meythl and advised we start this asap. He has also suggested we ask our GP to carry out the following tests:

8—9 am Fasting Cortisol, Aldosterone, DHEA BP sitting and standing ACTH Parathyroid Hormone

U&E TPO antibodies TSH T3 T4, Immunoglobulins Antibodies.

Can anyone telll me what these tests mean and what they are looking for? My GP tested my Thyroid a few weeks ago and this was 'normal'. I was given no further information.

Thank you, and thank you to the PAS for such an informative and useful conference.

3 Replies

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  • Hi Ashmeadskernal.

    B12 deficiency has many cross-over symptoms with other conditions and I suspect that these tests were suggested in order to rule,out other causes for your ongoing symptoms.

    This is what the tests are for:

    BP - sitting and standing - you'd have to buy a blood pressure machine (not expensive and very easy to use) and do this at home, probably two of three times a day, at different times. The sitting and standing bit is done at the same time - as it says - the first reading sitting down and the second reading immediately after, whilst standing up. The variation between the two can provide potential diagnostic information and point towards further tests, if necessary (for instance, potential problems with the adrenal gland would give very wide discrepancies between the two readings.

    8-9 fasting cortisol, aldosterone, DHEA, ACTH, Parathyroid hormone: these are tests that look in different ways at adrenal, parathyroid, and pituitary function - will also look at calcium levels. They will screen for a number of conditions that it would be useful to rule out (Addisons disease, Cushing's syndrome, secondary adrenal insufficiency, hypo/hyper pituitarism, over or under active parathyroid - to name but a few conditions (it does not mean that anybody thinks you have these - just that in light of your ongoing sypmptoms, it would be sensible to rule them out 😀). Your GP may not be able to do some of these tests - referal to an endocrinologist would be the usual course to get these done - unless you're very lucky and have a fantastic GP. (Endocrinologist would probably have to do the thyroid tests (as below) to - not many GP's will.

    U & E (urea and electrolytes): urea checks kidney functions and electrolytes checks levels of sodium, potassium, chloride and bicorbonate - a general screening test. Routine test - your GP can easily order.

    TSH, T3, T4 - tests thyroid function. Your GP will only have tested TSH, which does not give a true picture of thyroid status. You also need T3 and T4 to get a true thyroid status (your GP may not know this).

    Anti-TPO and Anti-Tg - these test for thyroid antibodies and are not included in the TSH test. These test for autoimmune thyroid conditions (Hashimoto's or Graves' disease). People with PA (another autoimmune condition) often have these conditions too - and there are many cross-over symptoms.

    Immunoglobins (also called antibodies) - IgA, IgG, IgM: this is a routine screening test which tests the levels of certain antibodies in the blood. Levels of any can be realised for a number of reasons (infection, presence of inflammatory disease, autoimmune conditions). It cannot specifically diagnose a condition - just indicates if further investigations are necessary. GP may or may not do these. If you suspect or want to rule out autoimmune conditions (and there are lots of them) then the best route is to ask to be referred to a rheumatologist - they are able to do much more specific testing that a GP - and worth doing if your symptoms are out of control and have been for some time.

    In short, your GP might think that is bit of a tall order - but I say that would be wrong. If you have been ill for some time and your symptoms are out of control, then your GP should be doing further investigations to rule out other potential causes - in other words, should be helping to get you well again 😀.

    Also - I note you say you have neurological problems. Have you been referred to a neurologist for further investigation? If not you should have been. Ask for a referral.

    All of this will probably take some time and not a little persuasion on your part. But it's not unreasonable for you to ask for these tests - so keep at it and the very best of luck with your GP.

    Come back if you need more help and let us know how you get on 😀.

  • Hi Foggeyme, thank you for taking the time to write such a comprehensive reply. Reading the above it appears my GP's lack of knowledge may be an issue. This is not a criticism of him, he has been very supportive prescribing daily injections, overseeing my regime of supplements and referring us to a second hematologist after the first questioned whether I had PA at all! I have seen a neurologist and also had MRI scans which have eliminated any possible cause in that area.

    I go to the doctors again next week and will take it from there but it appears my wife's initial feeling that some of my symptoms may be thyroid related could be correct. In the meantime I intend to pursue the Methyl route to see whether this brings about any improvement.

    Thank you again - I feel as though I need a degree in medicine!

  • No problem Ashmeadskernal....always happy to try and help.

    Really good news that the MRI's were clear and very good to hear of a GP that's supportive...and daily injections...wow...that's a result 😀.

    Hope all goes well with your GP...and would love to hear how you get on.

    Take care and please post again if,you need any more help 😀👍

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