Sticky Blood-Hughes Syndrome Support
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A very good news blog!

Having been referred myself to St Thomas'... now on second appointment next month, back to where I was originally treated in 1989 for multiple clots, and also where I had all three children safely, on 'fragmin'. Now my daughter, 14 is being referred, alongside me for her daily migraine.... should my son's 15 month and 4 day migraine come back, so will he. This has been brought about by a listening GP.... and my care is getting better. The damage was done when moving rurally into the catchment of a diabolical GP practice, 10 years back, where, nobody was allowed to change. However the Chief Executive at the time was not very thrilled with the idea of my film making friend making a film of myself hitching to hospital for emergency care for very visible out of control infections. Yes I did used to hitch.. 18 miles. and no it is not a good idea, but I had no choice at the time. On offering to make the film and deliver it to all news channels with short preview, I did suddenly a few years back receive my choice of GP practice 10 miles away by the following morning - funny that! I have psoriatic arthropathy, psoriarsis and hughes and sjgroens.

So things are gradually being repaired... stress and rubbish that our family should not have been exposed to... due to a neglectful attitude by the those earning huge non medical salaries.

I also found out that I have low cortisol and hypothryroidism... I start work with the practitioner this week.

My new GP practice where I have accessed care now for a number of years have gradually got the hang of my list of endless conditions.... and with the help of a private diagnosis by Professor Hughes.... things are all being ironed out.

I would do an over excited dance, but currently too tired zzzzzzzzzz etc.

6 Replies


That's fantastic news - I am doing the little dance for you - and in an open plan office!!

Well done for your determination - just proves that we can get there in the end even when it feels like we are facing a brick wall.

On another note, have you seen the programme on tv - The Food Hospital? they had a little boy on there who was experiencing daily migraines and they cured his with diet along, i think he was given magnesium and a couple of other supplements too - not saying that your kids' would but perhaps it's worth looking into? It was on channel four so it'll be on Channel 4 on-demand.

Any hoo, fantastic news and well deserved.

Tx x


Hi there.... with my own research, two years back. I contacted a very well known man in USA Dr Cohen... who has written a book on magnesium... then I read another book on headaches, how to heal your headaches by Dr David Bulcholz....

I then contacted the paediatrician and went to see him whilst employing nutritionist on the side. The result the correct dose of magnesium two years ago! plus b complex... also accidophilus for his gut due to being so sick for so long... every bug, and rota virus, the end result... the headache broke up... did not have to do the diet bit, as our diet was already very good with everything home made. The Doctor in America advised me on dose... however it then gave my son an upset stomach... almost like when he came up to the correct level, at this point i switched to a spray on the skin version. He still gets the migraine... but only once a month.... so yes a great advocate of this... however in view of our family history, if it comes back, (he is 12 now), with such a vengeance - my GP will be on to it. Funnily enough a distant family friend - a man had had a chronic daily migraine for 30 years he too did this, and is headache free. The paediatrician was a little sniffy... but iI did send him this..

So many drugs including beta blockers had been tried, and only allowed to go to school two mornings a week with huge bouts of sickness through the night.

Also did see programme, very good xxx

I did write to both doctors... as no mention of Hughes Syndrome in either book.... but both very very useful....although Dr B, is very scathing about magnesium which I ignored. We also did daily meditation... and anything which we could think of. He is back full time and very well currently.


Very good news!

If you want any hints/tips re the hypothyroidism, I'm your gal ;-)

Did your cortisol measure low on an blood test or was it a saliva one?



Hi there, been via Genova Diagnostics c/o Dr BDP yes very low on saliva tests and thyroid results spectacular, awaiting final instructions to move forward tomorrow... and thanks. MFx.



This is fantastic news i am really happy for you. I know it has ben difficult time but well done.



Thank you very much xx all the best


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