Sticky Blood-Hughes Syndrome Support
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This is my 1st post is their such a thing as a silly question?

I was diagnosed 4 years ago but only things I know are from this site and books my Daughter bought. I have had numerous health problems, but no joined up information between consultants, i attend haematology regularly, but have never had explained what readings mean, as APAS "appears" to be increasing my health problems I just wish I was more informed to be more confident to ask questions. Is it 'normal' health to get worse as years go on?

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Hi and welcome, different labs have different ranges for tests, so learning to read the parameters your doctor will help you with that. Also health does not necessarily get worse, there can be other factors such as - how is your iron doing? Also Vitamin B12 and also vitamin D, plus your Thyroid, all of these being off what they should be can make things a good deal worse. I think, just ask specific questions if you have an issue that is bothering you, and no not a silly question. MaryF

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Thank you, I have had thyroid checked a few times and that's fine. I have write questions down to ask Doctor, but he does not know, says I would need to ask specialist but non in my area ok England.

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Where are you in the UK, I will take a look for you. MaryF

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I live in North East England.

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There are these, taken from our list over on the right of the forum in pinned posts.

NORTH EAST NHS Specialists:

Dr Bridget Griffiths

Consultant Rheumatologist

Department of Rheumatology

Freeman Hospital

Freeman Road, High Heaton

Newcastle-upon-Tyne, NE7 7DN

Telephone: 0191 213 7978

_______________________________

Dr Richard Reece

Consultant Rheumatologist

Department of Rheumatology

Darlington Memorial Hospital

Hollyhurst Road, Darlington

County Durham, DL3 6HX

Telephone: 01325 380100

MaryF

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Thank you, I have an appointment in May, with haematology, so I will ask how I can be referred to see specialist as was told before, two years ago there was no specialist in NE rather than private in Darlington.

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Hi Sue and welcome, no question is silly if you don't understand what you have a question about. You are in good hands here and do you have a APS doctor ??? where are you from ??

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Thank you for reply, I am in North England

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I agree with what Mary says. This is a classic scenario and Prof Hughes talks about it often. He says people are diagnosed with Hughes, get treated with anticoagulants but continue to not improve or over a period of time have niggling issues that drag them down. If they are not tested or their whole medical picture looked at then other things will be missed, He speaks specifically of a lazy Thyroid and Sjogrens which we know often go as a trio. If these are not identified and treated, patients will never feel well. If indeed you do have any of these, then what Mary says is correct. Vit D, Ferritin and B12 all need to be in the optimal range or medications given will also not work correctly, especially the Thyroid.

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As Jet is asking you; where do you live and who is treating your APS (Hughes Syndrome)?

We need a Doctor specialized in autoimmun illnesses who knows APS and who can give us the right treatment for our very thick blood. After a proper anticoagulation we feel much much better and do not risque more clots or emboli or DVTs or PEs or whatever.....

Best wishes from Kerstin in Stockholm

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I live in North England, I have 3 consultants and attend haematology regularly but no Hughes specialist in the area

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Good, so now you can get a special Doctor from the list Mary has written above for you.

Did your daughter buy the book "Sticky Blood Explained" by Kay thackray? Hope she did.

Good Luck to feel better!

Kerstin

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There is only one silly question, and that would be the one you didn't ask! No worries.

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