Information for my GP

As a chronic migraine sufferer I am going to ask my GP to carry out blood tests for Hughes Syndrome. He always talks about evidence based practice, so what evidence can I direct him to? I know he won't do the tests if I don't show him evidence to support the need for them.

[MaryF Administrator]

Hi, have you looked through the list of symptoms? hughes-syndrome.org/ Also do you or other family members have any autoimmune diseases? Here are the blood tests: hughes-syndrome.org/about-h... Also have you had any clotting incidents etc?

MaryF

[Hidden in reply to MaryF]

Hi Mary, thanks for your reply. I have all the low grade symptoms except the blotchy skin. Thankfully I have not had any clot problems but hopefully my aim is to avoid anything like that. I have an under active thyroid but the Endo did not test for antibodies!! My son has Graves' disease and is having treatment for that.

[Frodo]

Be very careful how you approach this. My ex-GP told me that I had had 'ALL the blood tests' (which was not true). When I heard of Prof Hughes advice re. testing migraine sufferers, and seen the list of low level symptoms, I asked if I had had the test for Hughes syndrome. She was furious and without further discussion, told me I was making up symptoms I had read about on the internet. Presumably this is now on my medical records, as my new GP's first act was to offer me counselling.

[Hidden in reply to Frodo]

Hi Frodo, thanks for your reply. I know what you mean about asking the GP for tests. I really did plan on staying away for a while as I got the feeling I was being a nuisance. My GP and the Endo both said I didn't have an under active thyroid but the private specialist I saw is treating me with thyroid hormone and I am really improving, it's not rocket science to look at symptoms!

I also made a stand re my husband when they would not treat his neurological symptoms with Vit B12 injections. So I thought it best to stay away and let the dust settle.

Some medics don't like us gaining info from the Internet! What the heck that is about I don't know? Is it a power thing? I'm not sure, cos other DRs can be quite happy to discuss things even if they might not agree with me!

I will never understand some doctors.

But regarding your comment about something maybe being on your medical records. Why don't you ask for access to your records? You can then know what is written in there yourself!