Sticky Blood-Hughes Syndrome Support

Haven't posted in a while, new things happening

Since my last post a few months ago, I have been having such problems with my lower back that put me in bed for almost a week over the holidays, then on top of it..I managed to get the flu. I also started to get a very nasty pain in my lower right abdominal area that just would not go away. I was running a low-grade fever, but now nausea. I could not get into my family doctor of course, so I ended up in the Emergency Room. They did lab work, a urinalysis and a CT scan of my abdominal area to check things out. Everything came back pretty normal, except the scan. Turns out I have some spinal stenosis going on in my lower back, and I wasn't supposed to have an appendix, but I do. I also have a very enlarged liver. Normal liver is to be 18cm, mine is 21cm and very fatty. So I had to make an appointment with my family doctor. He told me I have to loose at least 30 pounds to help with getting the liver back down where it belongs. He also sent me to a surgeon for my back. I went to see him Friday morning. He confirmed the back problem and also the liver thing, BUT he told me something my primary care doctor did not. He told me that I have a spot on my adrenal gland. He says it isn't cancerous at this point, but he want's to keep a close eye on it. This has me scared to death. I have been trying to find all I can to read about adrenal gland cancer, I think I am going to drive myself crazy over it. Also, if my insurance ok's it, I am having my left knee, which I already had replaced 3 years ago, replaced again February 19th. The old replacement is coming loose and causing me all kinds of pain. Not really looking forward to the surgery and really not looking forward to the therapy afterward!!

9 Replies

Hi Becca10, Sorry to hear that you have had so much trouble lately.

I know you have had 2 positive bloodtests for APS 2 years ago so you have got a diagnose.

Last time we spoke you were not on warfarin but on Aspirin I think.

Did you manage to find an APS-doctor in Pennsylvania? I think you must talk to a doctor who understands APS now as you have liver- and back-problems and that you intend to op a knee for the second time.

I am not a doctor but I have myself heard from one of our bests doctors that it is unusual with cancer when you have got APS. So do not worry about the adrenal gland.

I feel sorry for you because you have so many things and not APS-doctor. Could you at least wait with the knee op till you have found a doctor who really understands APS?

Best wishes from Kerstin


Hi Kerstin..

The hematologist now tells me that I have lupus antibodies in my blood and not APS? From what I have read, they are basically the same thing. Yes I do take a lo-dose aspirin once a day. I found an APS-doctor in Pennsylvania. She is actually located in Pittsburgh, PA..which is about 3 1/2 hours from me. I am waiting to hear back from her office about an appointment. I have also been going to a Rheumatologist who seems to know quite a bit about APS, which makes me feel a little bit more at ease. I am trying not to worry about the adrenal gland, it just caught me off guard when the doctor said about it. I really wish I could hold off the the knee operation, but it is to the point that I can hardly walk on my leg even with the help of a walker.


HI, you sound as if an awful lot is going on, please get them to look at your Thyroid also, remembering the TSH testing is often not very good. Thyroid and Adrenal problems are not unusual with Hughes Syndrome/APS and can make it hard to lose weight if hypothyroid! I hope things get better for you. MaryF


I do have problems with my thyroid. Back in the 1990's, I had to have the right half of it removed due to having a nodule on it. It wasn't cancerous, thank goodness. I have been on medication ever since. I know it is very difficult for me to loose any kind of weight. I have tried everything!!


Some people do better on the Natural Desiccated Thyroid preparations, unfortunately you have to fight a bit for it! However some in the USA get this quite successfully. MaryF


I never heard of that before. I will have to look into that


I was given a similar " is it cancer? No, but. . . " when MRIs run in 2000 to investigate my panic attacks/mini strokes revealed a large cyst encompassing my pineal gland. The doctor was at first quite concerned -more over it then my mini strokes. I answered a slew of questions, and had follow up MRIs 6 and then 12 months later. Neither showed any change in the pineal cyst.

I also had a bunch of uterine and breast fibroids which went away, almost magically, after I started a gluten free diet. I have not had any more MRIs to document the pineal cyst, but since I gave no new symptoms we all assume it's benign.

And as to symptoms? The neurologist who spotted the cyst, ( and suspected APS) attributes my famous intolerance to staying up past 8 PM and difficulties I have adjusting to other time zones to the pineal cyst.

But for years I still spent part of every hour worrying " could I be cancer?" Then it was a part of every day, then every week . . . Month. And until I read your post I realize I haven't given "Penee" ( I tend to anthopamorphize things) a thought in years!

Good luck, and when the worry comes down hard ( as it did with me early after Penee's discovery,) find something to distract yourself! Lots of movies, TV, books and hikes worked for me. -- sort of.


And also Lupus Anticoagulant means you have APS. LA is one the 3 most important antibodies to detect APS. I have it.

Wish you well!



Just as an add on. Have you had your vit d levels checked? If they are low it may be exacerbating the back problems and general unwell feeling.


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