Sticky Blood-Hughes Syndrome Support
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Excellent haematologist and Rheumatologist in Kent, Uk

We all know how hard real help is to find in the form of specialists so I wanted to share my recent experiences.

Yesterday I saw Dr Gillian Evans at Kent and Canterbury Hospital. She was amazing. She really 'got it'.

She didn't have a magic wand but she really saw and understood what was going on physically and how that made me feel emotionally. She had a lot of knowledge and did her best for me, as did her nurse Michelle.

My rheumatologist is Dr Denise DeLord who understands APS (as well as Lupus and Sjogrens and Fibromyalgia that I have too) she definitely goes the extra mile to help me.

I do always take a supporter with me and I always prepare for appointments. (This helps make the most of the appointment time).

I feel more hopeful than I have for a very long time - I wish the same for you all 💋

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Hi, can you check under our pinned posts and see if she is already there, if not we will add her, and you can email her the new charity website: ghic.world/

MaryF

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How do I do that? How do I find pinned posts (on my iPhone) I'm not great with technology! 💋

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?

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Thats brilliant and it makes all the difference to us mentally when we know we have a Dr who has our back.

Just a word to point out to check your Thyroid. I note that you say you have Fibro along with the normal "trio". Fibro is often diagnosed when it is mistaken for a low thyroid or the symptoms of Sjogrens. Im not disputing that you don't or could not have it "as well as" but it would be as well to get the Thyroid checked because you have the same set up as me and the overlap makes it very difficult to separate these things out. If not diagnosed you will never feel as well as you should.

If you don't want to be seen to question your new found friend of a Dr then why not do the checks yourself. Medichecks have 20% off until the 30th April so any of these Thyroid offers below would be good.

You could just do this one:

medichecks.com/thyroid-func...

or add a few more tests on this:

medichecks.com/thyroid-func...

or go the whole hog as I do and add in all the extra tests we advise like B12, ferritin and Vit D on this one:

medichecks.com/thyroid-func...

****Edited by Admin - all links correct now******

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Thank u. It's been one of those things I've been going to do. I know I should!

Everything's just too much trouble. It's not the money or having the test but it's the organising. Pathetic and illogical I know.

I've been to hell this year and am still there. I have *Latent Sinus Node Disease that's been finally diagnosed this week.

With an average pulse of 45 all year and average oxygen sat of 90% I'm sure it has made the APS worse. Logic tells me it must have???

[*latent - not yet fully developed.]

{Sinus Node regulates the heartrate - pulse}

(Disease caused by what??? Possible autoimmune?)

Anyway - I'm now on the list for a pacemaker finally!!!

Thank u for the nudge I must kick my but and get onto it

PS Last week my B12 result was normal 💋

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I've just clicked on the links

1= 3 tests

2= 6 tests

3= same as 2

but I'd like the additional ones too.

Please can u give me that link.

Thank u so much for ur time 💋

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Oops must have double copied one of them. Sorry. Here is what should have been the final link and is the one I do with all the tests clubbed together. You can do it via a finger prick with two vials yourself, but if you cant be bothered and want a vein draw just click on the link for choosing that and they will charge a bit more and send you to your nearest lab to get it done.

medichecks.com/thyroid-func...

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Thank u so much 💋

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Ok I'm such a pain I clicked add to basket - nothing! I tried several times.

Is it me? This is why I struggle with motivation! X

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I went back to it and it worked fine! Must have been a glitch.

I've ordered the plus test and a nurse home visit. (I assume they will ring me).

They did not advise the fingerprick test and the nearest clinic is 2 hour drive. So I'm awaiting an appointment now. Thank u for ur help 💋

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The nurse is coming on the 18th to take my bloods. Can't wait to see the results

Thank u for ur help - will let u know what the results are 💋

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