Not doing so well

[SueH21]

Having been to ER 6 was ago who had never heard of APAS been to GP sent for test spleen enlarged kidney stones gallbladder stoner fatty liver feel so poorly tired and low mood this got me down. Please any advise welcome?

[KellyInTexas Administrator]

I had to have gall bladder removed. Result of APS most likely- no stones- low ejection fraction. Age 29... made me very sick. No sleep. Chronically. Can really get you down just that alone- much less the organs malfunctioning! I'm so very sorry... I hope you get this resolved soon.

[MaryF Administrator]

Hi there sorry you feel so bad, some of us with Hughes Syndrome/APS, and this is common, also have a Thyroid problem, if this is not picked up it can cause problems such as high cholesterol and then gallbladder problem, so important to test your thyroid, plus D, B12 and Iron also. Presumably they will also look at your inflammation markers. An untreated thyroid can cause terrible depression. It is important that your GP and you have an expert to help you with regards to Hughes Syndrome./APS. It is important to have help with the fatigue as well as any coagulation issues.

MaryF

[Lure2]

Hi,

I am very sorry that you feel so poorly tired and in low mood these days!

Have you tried to find a Specialist from the list Mary gave you some weeks ago? I know you have a fantastic daugher who has bought books about APS for you. I do not know how old you are but perhaps you could ask her to try to help you to get in contact with a Specialist who your GP could work together with.

Also Mary has very good suggestions for bloodtests but try to get in touch with a Doctor specialized in autoimmun illnesses like Hughes Syndrome/APS. We must have such a Doctor when we have this illness.

Are you anticoagulated for Hughes Syndrome today? Warfarin perhaps?

I hope you will soon feel better again and please tell us how it goes for you!

Best wishes from Kerstin in Stockholm

[SueH21]

Thank you for your replies and kind words. I don't take Warfrin but on anti clotting Clopidogrel. I spoke with my GP re specialist but he said as I go to Haematology at hospital annually their is no need to see a specialist?

[Lure2 in reply to SueH21]

We know on this site as we have Hughes Syndrome ourselves and listen to so many members with similar symptoms that it is a "must" to have a Specialist of autoimmun illnesses.

Also as you take Clopidogrel you are not anticoagulated. Clopidogrel is like Aspirin a antiplatelet drug but a bit better than Aspirin perhaps. Hughes Syndrome/APS is too thick blood that has to be thinned to avoid symptoms and clots etc etc.

When you were diagnosed was it on symptoms or/and on antibodies?

It could be possible that you need anticoagulation now to thin your blood and that Clopidogrel is not enough. Very few Doctors understand this rare and curious illness.

Kerstin

[SueH21]

I was diagnosed after tests following a stroke, I just feel in the last 12 months I have had one illness after another to the point think my GP sick of me. Think if I had a doctor who fully understood would get more appropriate treatment, not that I don't know how lucky I am to have nhs.

[Lure2 in reply to SueH21]

I am from Sweden and do not understand how lucky you are to have NHS.

Anyway what I am sure about is that you need a Specialist of Hughes Syndrome. You can be lucky as I realize you live in England because members in the US have so difficult to get a Specialist. Your GP is not sick of you but he does not understand what you talk of. I have heard so many members say the same about there Doctors and GPs. It is a fight really to be understood when you have got Hughes Syndrome. It is the same all around the world.

Try to learn as much as you can as knowledge is power!

if you feel very tired as I understand you are at present, could you perhaps ask you daughter to help you to get in contact with one of those Specialists that Mary wrote to you about.

Please tell us how it goes for you!

Kerstin

[Wittycjt]

Where are you located? Maybe someone can help you find a specialist👁

[SueH21]

I have the name of a local specialist, but need to be referred by GP.

[ledlegs in reply to SueH21]

Most GP's have a self referral system ( which they don't tell you about) so you can refer yourself to see a specialist. I did this myself and have been to see Prof Hunt at St.Thomas' a few times, best thing I've done. You have the right to see any doctor you wish so don't be fobbed off by your GP. Perhaps see if your daughter can go with you to your GP to ask about self referral and stand your ground. As I say don't be fobbed off.

[SueH21 in reply to ledlegs]

Thanks for this, my Daughter thinks we should, I just don't want to upset Doctor but feel I'm going round in circles, then when I have tests and they find another thing wrong, like recently they are surprised.