I have Primary APS which has led to bilaterally renal vein thrombosis and renal failure. I was fortunate to have a kidney transplant from my husband in 2000 which continues to function well. I also have psoriatic arthritis.
My key issue is fairly severe ongoing weightloss - I've had full GI investigations and nothing sinister has been found. All blood tests have proven negative - thyroid, cancer markers, diabetes etc so my GP is stumped. I've gone from a size 14 to a 10 over 2 years unintentionally (I know some people will hate me!) but despite eating properly I can't put anything on and have no subcutaneous Anyone else experience this?
Thanks Debbie
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I'm very tired and get night sweats a couple of times a week where I have to change my clothing, but never sure if that's the APS? I've tried a gluten free diet to see if that helps with weight gain (it didn't!). Can't help but feel there must be something going on somewhere despite the negative tests
My GP thinks it might be the way my body is dealing with chronic illnesses, but I've never heard that mentioned before.
The only thing that I’ve been told that is somewhat similar is this:
In Oct 2014 ( pre APS diagnosis) I had a hysterectomy, enterocele , cystocele , and rectocele all in one massive surgery.
I was not menopausal or peri menopausal at that time.
I was diagnosed with APS exactly two years later.
My obgyn was keeping close tabs on my hormone levels. I went from normal levels to completely through menopause in 6 months.
She had never seen it happen so quickly and so completely.
Her explanation was: “ I think it’s because you are ill. Sometimes when the body is taxed these things happen. It’s a reflection of a diseased state. “
It could be your body's way of dealing with stress.My husband was investigated as he lost few stone in few months.went from size large to small.I dreaded the cancer word but they couldn't find anything and attributed it to hidden stress.He did have ct scan and found blockage in his urethra but that is being treated separately.They advised him to add cream and extra dairy products in his diet and rice puddings and full fat milk.He is diabetic which is no where near your level.
Thanks - sorry to hear what you've been through. Interesting to hear another doctor mentioning stress on the body - I thought it was my GPs way of saying 'I've no idea what's going on'!
He is fine.more tablets 😖but he pleased he's slimmer .had to have whole new wardrobe clothes thou.weight steadied now so hope yours will.its very worrying
Many thanks - yes have had full endoscopy /colonoscopy and even an internal pancreatic ultrasound all of which were fine.
Interesting thoughts about adrenals - do you know if there's a blood test for levels? Also what additional tests are there for thyroid? Sorry to fire all these questions at you but you sound more knowledgeable than any medic I've spoken to so far!
Everyone seems to feel it's nothing sinister apart from the nurse who went to give me my subcut Denusamab injection in my tummy (for osteoporosis) and couldn't find any fat!
Will ask for my blood test results from the surgery so I can see exactly what they did
Hi, sorry to hear you are having trouble, obviously your first port of call is the GP and consultant, which you have done, the other thing to bear in mind is that Thyroid testing is pretty poor, often only minimal testing done, which is why so often Thyroid issues are missed, a lot of us order our own panel of tests like these below, I did and it showed up that I had very poor Thyroid function, it also looked at my Thyroid antibodies which were raised at the time when I first tested.medichecks.com/thyroid-func... Hashimotos is frequently missed or not understood adequately by the medical profession and this can cause either a fast or slow Thyroid, ie Hyper Thyroidism and also Hypo Thyroidism, Also Pernicious Anaemia can cause weight loss! My dodgy Thyroid function was missed for years and years. The tests I did and ordered myself were similar to the above and proved everything that the other tests had not! MaryF
Thanks Mary--I must get a copy of my results to see what they tested but as you say I suspect they were fairly basic I've an appt in the summer with my APS specialist so will flag up the excellent thoughts raised on this forum
My first autoimmune symptoms were low grade fever, early satiety, weightloss and nausea 40 years ago. On the blood tests taken then I only had a high SED rate/ESR. Currently my diagnosis are UCTD -lupus & ms like, APS and Sjogrens. In my first flare I lost 35 lbs. When I felt better I gained weight. In new flares I would lose 20 or so lbs. I had clothes in so many sizes. Early satiety meant I wanted to eat, but I could only eat really small portions, no matter how delicious the food. This went on for 7 years until a rheumatologist put me on plaquenil and I felt so much better. He put me on a low dose--200 mg a day, so it took awhile to kick in completely. At the time It wasn't know this could be a symptom of lupus, but now they have found it can be the earliest symptoms.
I'm not saying you do have lupus, but if you are not on plaquenil now it might be worth asking if you can try it.
Night sweats are generally a symptom of a systemic illness. If these are NEW symptoms, they may be significant. Tell your doctor if you haven’t already.
Thanks for asking. After slipping below 50kg when they would have to adjust all my medication, my son suggested I use a calorie counting app (My Fitness Pal) and measure the actual food I was eating with a target of just over 2000 per day. It's hard work taking on board that much but I eat lots of snacks, avocado, nuts and yoghurt drinks which I find easier. I'm now 51kg so heading in the right direction but it's bizarre - I should be huge the amount I'm eating!
Night sweats have marginally reduced but I'm still very tired. I think it may be linked to stress as have a lot of other stuff going on at the moment.
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