Sticky Blood-Hughes Syndrome Support
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Morning All- just wondered what to expect next


As you know from previous threads I am seeing Dr Situnayake next Wednesday and I just wondered in everyone's experience what is likely to happen next?

I have had one positive test for Lupus anticoagulant. Normal test for cardiolipin and not had the third test yet.

My symptoms before my 'funny turn' at work were slight balance issues and occasional tinnitus but this can also be attributed to my thyroid condition as I understand it.

Since being put on clopidogrel my dizziness has become worse so I don't know if that is the treatment or the condition.

Just wondering what route Dr Situnayake will take with tests? I have had two healthy pregnancies one of which was four years ago, had gestational diabetes but was controlled with diet and no complications.

Since my funny turn which followed a high carb meal (having not eaten carbs for about six month) I have had a few post prandial issues and it seems I have something called reactive hypoglycaemia which is where my body reacts to carbs and or sugar by spiking and then dropping.

My symptoms when I have felt unwell are very consistent with

Hypoglycaemia, including cold extremeties, shivering, a numb cheekbone which resolves when sugar levels stabilise and

Almost fainting after a high carb meal following a sudden drop in blood pressure. I also have postular hypotension.

I am so confused right now as I don't know whether I have a blood glucose disorder and they have discovered my aps antibodies as a side issue or whether my main issue is APS and I had a TIA as opposed to hypoglycaemia.

On the day of the funny turn at work the oddness started as soon as I had finished eating and was elevated heart rate stuttering for a couple of mins but not noticed by the person I was talking to, felt a little queazy, no headache but got very warm and had to sit by window and felr better after eating a biscuit. My gut feeling is hypoglycaemia but now I'm not so sure.

Any help is very gratefully received. Thank goodness for this forum.

Many thanks


6 Replies

Hi Emma,

As long as you are seeing a Specialist (from the charitys website perhaps) you can feel safe.

Make notes and ask those most relevant questions. Not too many. If they put you on Warfarin now you can not take the bloodsamples of Lupus Anticoagulant anymore. Ask for copies of your bloodsamples.

You ask what will happen next; probably not Warfarin. He or she must listen to your symptoms of APS and also reflect on your other problems from low bloodsuger and hypothyreoidos. New bloodsamples perhaps.

As Jet suggested yesterday: Try to think positive. So many here struggle to get an APS-Specialist. You probably got one now. Hope so.

Good Luck next Wednesday. Let us hear how it goes for you.

Kerstin in Stockholm


Hi there, make notes in bullet points of questions to ask and history to report, and keep in mind it is not unusual to have a collection of conditions, many of us do have. MaryF


When I saw dr Situnayake the first time I had the usual urine, weight and blood pressure checks.

My symptoms were mainly neurological and I already had tested positive. He did a thorough exam including BP checks.

He ordered repeat blood tests which included all the ones for APS, thyroid and a full autoimmune profile. He also ordered an MRI of my head which is also had done a few months before but he wanted another one doing.

I saw him 2 weeks later to go through the results and then a couple of times after that then he referred me to Prof Gordon as I was showing other signs of lupus and sjogrens and she is a specialist in all of these conditions. Write a list, be to the point and take someone with you. I always take someone because I don't take in everything said to me. I saw him as an NHS patient and was always very happy with the care I received from him.


That is very reassuring thank you so much. It will be such a relief to see someone who can talk to me about this and check for all of autoimmune issues.


I am 60 now. But when I was in my 20s I had a lot of hypoglycemia problems as well as postural hypotension. After years of frustrating dismissals by GPs and numerous wake-ups in an ER after passing out I finally saw a doctor who told me to modify my diet: salt food and eat more veggies, protein and whole fruit. Since I was a college student at a school which had excellent academics but horrid cafeterias it was challenging to eat veggies unpolluted by sugars and starches. But the diet did work. When I could follow it.

As I aged the hypoglycemia issues have waxed and waned, and though my BP has become more stable, I still must lean on extra salt if exercising in hot, sweaty weather.

I have found that for me I must eat mindfully. Plan to take a vigorous hike with my hiking club this afternoon? Absolutely no empty carbs with breakfast. And take a high protein power bar with me. Will the temps be over 65? Carry a banana or a bottle of Gatorade -- and my big complaint with Gatorade? It has sugar! Grrrrrr! I want the electrolytes, NOT the sugar! I don't care what it tastes like! ( maybe someone in the exercise beverage industry will read this and produce a sugar free electrolyte drink.)

1 like

Coconut water is the best thing for electrolytes and no sugar. Thanks for reply xx


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