Checking all avenues regarding diagnosis

[MaryF]

As you know often when people arrive on this forum, or come back with new problems, we do as admins often advise, that individual if they can possibly afford it, (and yes I am always having to save up for myself and children), do extra panels of tests. This is because B12 deficiency can cause a host of problems I will put a paper below, and also poor Thyroid function, either due to very narrow testing or medications not working as well as they should. An untreated Thyroid or an inadequately treated Thyroid can cause terrible problems. This is why we also encourage our members to join the Thyroid UK forum, if they feel they do have problems.

If you are supplementing with B12 tablets or liquid or patches prior to testing it can alter the test results. If you are on Thyroid medication, it is best to test before you take your daily dose etc.

We know we have enough problems, having Hughes Syndrome/APS, and many of us have extra diseases on top. I know from personal experience that when I tested I found my own Thyroid was extremely slow, I also had low Vitamin B12 plus low D, plus of course passing two out of three of the main Hughes Syndrome/APS tests. The same for my children despite a very healthy Mediterranean diet plus exercise.

If you are on Thyroid medication, alongside a panel like this medichecks.com/thyroid-func... you would also need to consider a Reverse T3 test. We are not medically trained but we have been sorting these things out for ourselves and others for a very long time.

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

The current testing I am doing at the moment is the link above, but I also use Blue Horizon who also have good tests, and you can apply the code MARY20 to get a discount on their main tests.

MaryF

[Scandal]

Thanks, i am on 100ml thyroxine plus the rumy done all the blood tests it's just they don't tell you much and i have to wait 7 months for next appointment,

[MaryF Administrator in reply to Scandal]

Hi, great that some tests are done, but your Rheumy will not have access to all the tests mentioned in the link above, they usually only do the TSH and sometimes Thyroid antibodies, and not Reverse T3, or T3 which is why many of us have to save up and order our own, also the B12 often not an Active B12 test is not done, and at times the dots are not joined in terms of other indicators for Pernicious Anaemia, best of luck. MaryF

[Ylmom]

Mary did your children test Postitive for APS? This is something I worry about with mine.

[HollyHeski Administrator in reply to Ylmom]

Hi, I understand your question, I think its one we constantly worry about?!

My children are now in their 20s and have been tested many times - everytime they are unwell and I can relate the symptoms to APS, I ask for them to be checked.

Amazingly and so grateful the tests come back ok. (Wont stop me wirrying though,).

[MaryF Administrator in reply to Ylmom]

Hi, my daughter passed Lupus tests when when she was very small, but I was told it was a fluke! Later on both of mine passed two out of the three tests for Hughes Syndrome/APS, rather like myself. However my sisters also have a mild Hughes Syndrome/APS with a history of clotting at times, and their children are fine. So my advice to you, is to try not to worry, often children don't pass the tests until they are older, and many will not have it anyway. Unless there are clear and worrying symptoms, I would just watch and wait and be as relaxed about it as possible. MaryF