Is this a symptom of APS?

Hello everyone, I hope you are all well?

I am really struggling with cold night sweats, waking up in the morning soaked through. I've also lots a lot of weight quite rapidly, so much that my clothes are literally hanging off me. My hair is also falling out a bit.

I find it difficult to differentiate between my symptoms because I have multiple auto immune diseases - but wondered if this sounds like an APS thing?

I take a lot of medications, but for APS I take 400mg hydroxychlorochine and 8mg acenocoumarol. My INR target range is 3-4.

Many thanks :)

Annie.

23 Replies

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  • Hi you urgently need to see your consultant and or GP, it is possible with Lupus to have weight loss, but it can be indicative of other disorders. It is not uncommon to develop a thyroid problem with APS/Hughes. I have a slow one which made me put on weight, (Hypo Thyrodism), thankfully coming back into line now. However it is also possible to develop a fast thyroid - Hyper Thyrodism. Make sure they do the necessary tests for this. It is also possible to have both - Hashimotos, they will need to look for antibodies for this.

    MaryF

  • Oh, thank you for the reply Mary. I've been told I have lupus 'like' syndrome, but not SLE. I do have APS and a lot of other auto immune diseases.

  • I agree with my colleague, Mary. Dave

  • I don't think I can cope with another diagnosis… I really don't. The sweats have been on and off, but mostly on for about 6 months - only at night, and I've lost about 2 stone in the last six months.

  • If you have hyper thyroid problems this can be treated. Come back to me if you need further help. MaryF

  • Thank you Mary x

  • Hi annisensi,

    I wonder as usual if you have got an APS-specialist as this is the most important thing when we have APS and then a diagnose of course.

    In your case, as you also are diagnosed with MS and other autoimmun illnesses, it is even more important that he knows the different between MS and APS as they are often mixed together. You need to take a lot of bloodsamples I should say.

    I was operated for hyperparatyreodosis in 2006. I had then too much calcium in my blood.

    You need to have a talk with a knowledable doctor about your loss in weight and loosing hair etc and especially also a Specialist of APS. For me it does not sounds like APS.

    Best wishes from Kerstin in Stockholm

  • Hi Kerstin,

    I am under the care of the wonderful St Thomas' hospital in London, and I have an APS specialist nurse. I self test regularly, which works well for me. I email over the readings and get advice back. Unfortunately 'my' nurse has been away for some months now and so getting advice has not been so easy.

  • This sounds very familiar, my grandma developed an overactive thyroid, she lost a lot of her hair and her weight dropped dramatically. It was explained that she had experienced a thyroid 'storm' after losing a stone in just two weeks. Her weight levelled at four stone. I agree with Mary, you must see your doctor asap.

  • I have been told numerous times that APS has a lot to do with our hormones. I only showed symptoms of APS while pregnant and about 1 to 2 yrs after giving birth and for 6-12 months after losing a baby. I started menopause at 28 yrs old shortly after giving birth to my son. I all of a sudden dropped all 69 lbs I gained during my pregnancy. I was having night sweats so bad I'd wake up sheets, blankets, pillows and clothes soaked. So I would talk to your rheumy and see if they think you are starting menopause. It's been 3 yrs since my hysterectomy that sent mebdirectly into menipause and every now and then ill have a night of bad night sweats.

    As for hair falling out. My hair was so thick before I started to show symptoms of APS that I tied my hair in a knot on the top of my head because I'd break rubber bands trying to put then in once. Now since I've been sick with APS I'll brush my hair having to empty the brush at least twice during brushing. I can wrap a rubber band around my hair 3 times now. I started taking Hair, Skin, and Nails from It Works and i noticed a huge difference but didn't say anything to my hair stylist to see if she noticed. Just looking my hair over before we decided on style she said well we need to thin your hair. I am so happy!

    As for the weight loss have them check your thyroid. I've read many articles and talked to my docs when it happened to me and they always check my thyroid. They won't give any meds because my body switches from Hyper to Hypo without notice.

    I hope this helped! I've found my experience with this disease is very similar to others but not many say anything.

  • I have been on Warfarin for over 30yrs, I was always asked by doctors about my hair, eg=any hair loss. I was fine then but now I am losing a lot of hair, which makes me think in my case it is the warfarin.

  • Hi Sue, I was on warfarin initially, but was quickly changed to acenocoumarol because warfarin really made my hair fall out! Perhaps you could ask if you might be able to change to acenocoumarol?

  • Hi Annie, I will ask about this. Thank-You.x

  • Hello My Rheumatologist says once you are diagnosed with one

    Autoimmune Disorder it is common to have your immune system

    "act up" in another part of the body...in some way autoimmune disorders are systemic...just passing on info

  • That's as I understand it too. x

  • I find (in the US) that Rheumatologists are more 'holistic'..

    ie do not have a narrow focus based on medical Specialty

    ie hematologist, endocrinologist etc.

  • Thank you all for your replies, I believe my thyroid has been checked in the past, from what you are all saying it needs checking again. I was checked for early menopause a year or so ago, but that came back clear. I think my hormones were low side of normal.

    I am not currently under the care of a rheumatologist, although I have seen one in the past, I see the haematologist about every six months.

    Unfortunately my GP who is excellent is on maternity leave until January, but I will make an appointment with one of the other GP's at the practice.

    I've had my B12 injection this morning, fortunately I am trusted to do those myself, and for me every two months is the longest I can seem to manage without them. Maybe I will see some improvement tomorrow?

    I must admit, I'm a bit afraid of having another new diagnosis. I've been diagnosed with PTSD because of having suffered a stroke, massive PE'S and an arterial clot in my leg which required major surgery. Getting out of the house is quite an emotional ordeal for me, but I am working on it.

  • Hey, I also had what was called a Large Saddle PE. I don't know what the difference between Large and Massive is, but my Hematologist told me that she was going to keep me on Warfarin for life based on the size of my clots, whether my blood tests for clotting disorders came back positive or not. I have some moments of panic from time to time when I drive by the hospital I was at for seven days. I can relate to having severe anxiety after such a traumatic event. How did you get diagnosed with your PE's? Did you have to be taken to the hospital via ambulance? I hope you get to the bottom of what's going on with your night sweats (I don't know anything about thyroid issues or any of that). I hope you feel better soon.

  • I don't know what a large saddle clot is either. I had been breathless for about a week, went to my Gp who said it was probably a chest infection and gave me antibiotics. That night I just could not breathe without coughing. I couldn't breathe at all unless I used my daughters asthma inhaler. I think, possibly that saved me. In the morning I knew something was seriously wrong. I went into practical mode, sent my partner out to walk the dog whilst I wrote a few important things down. (such as what hold be done - if…) We went to A&E and I knew I was bad - but the clots were in both arteries to the heart and in every segment of each lung. I was put on heparin I think and was in for about two weeks. I was told I was critical on arrival. My lungs are now perfectly fine!

  • Hi again,

    I have heard so much good about St Thomas hospital but I still wonder if your have an APS-Specialist. A nurse is not the same.

    As you have so many diagnoses and several famours doctors it can happen that they do not want to change other doctors diagnoses. Doctors can be afraid sometimes not to have given the right diagnose some years ago and another Specialist do not want to interfere with that treatment and diagnose. Prestige also and afraid not to know enough. They are just human.

    It is difficult issues the doctors have to agree on and you are the one in the middle if you understand what i want to say ......

    A have read a little about what you have written earlier and I think you need an answer if you have Lupus or APS or Thyroid or all of them. Also if you have got MS?

    Anyway you do not feel good at all and you need a new fresh Specialist I think. You are afraid of getting a new diagnose and I can well understand that. My personal impression (very fast of course and I only know a little of APS as I am not Medical trained only read about what Prof Hughes says ) is that you may loose a diagnose if you meet the right Specialist, even somewhere else perhaps.

    I know that APsnotFab suggested another drug two years ago but you are still on an anticoagulation drug that I do not know what it is.

    APsnotFab and Mary are two wise women who know a lot about APS and Thyroid-issues and Lupus and Sjögrens. Listen to them.

    Hope you will find another APS-Specialist as I guess that you have got a diagnose of APS. Have you? Wish i could help you!

    Kerstin

  • Hi Kerstin,

    I completeley understand, and I know that can happen. I see one of the Haematologists at St Thomas' for APS, yes, I do have a diagnosis. I saw a rheumatologist there who said not SLE. My haematologist has prescribed the hydroxychloroquine for joint pains as it's so far considered that I have 'lupus like syndrome', which I believe means that I have the symptoms but not the antibodies for SLE. I saw the MS specialist neurologist at Tommy's for a while (to keep things 'under one roof') but changed as traveling to London isn't easy, so I now see a neurologist closer to home. My Gp manages things like pernicious anaemia and vitamin D deficiency.

    I was diagnosed with MS in 2004 following a lumbar puncture - so the diagnosis is definite. It is my primary auto immune disease.

    Oh, I take acenocoumarol as an anticoagulant as warfarin caused my hair to fall out.

    At this point I think the best thing to do is get my thyroid checked and see what happens from there...

  • I was reading your post and wondering if you have thyroid trouble. I have an underactive thyroid and take medication. It can make you feel quite unwell if not diagnosed. I would urgently visit your doctor. I do sometimes get sweats but put it down to my age. No weight loss but my hair seems to be thinner so I would guess it could be your thyroid.

    Hope you get a diagnosis soon so that you will feel a lot better as the right medication will make all the difference.

  • Thank you, the general advice has been to get my thyroid checked, so I'm just plucking up the courage and I shall make an appointment :)

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