Sticky Blood-Hughes Syndrome Support
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cold at night

Hi everyone, I am new to this and have many questions, many already answered by looking through here, so thank you for having this forum. One more - when resting, especially at night, I freeze, and cannot control my temperature or warm up at all, no matter how many blankets. when staying elsewhere, people think I am crazy because I ask for so many blankets. Could not find where any of you experience the same? Many thanks!

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Hi Esolt,

I see that you have just joined our site so I wonder if you have got diagnosed with HS/APS?

Important to know that you have the same illness as us before answering your question.

Best wishes from Kerstin in Stockholm

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yes, I have tested positive twice with more than a year waiting period in between. they tested after I lost my fourth baby.

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sorry, I meant for APS. Is Hughes Syndrome the same exactly?

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Yes Antiphospholipidsyndrome is the same as APS or Sticky Blood.

I do not have thyroid-issues (still operated with hyperparathyroidosis in 2008) but had a "funny" feeling of cold blood running though my whole body. At the same time exstremely but high bloodpressure but a couple of minutes later my bloodpressure was much lower (I tested at home) and the feeling of cold blood was gone. This happened even if I was treated by a Professor in Karolinska hospital here in Stockholm with bloodpressure drugs.

After anticoagulation with Warfarin (INR 4.0) those feelings and also very high bloodpressure are gone for good.

I have not heard of anyone else with these "cold feelings". I believe they were PEs or microclots.

Kerstin in Stockholm

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Hi, I did experience this for years, as unfortunately like many people I slipped through the net in terms of my Thyroid! The reason for this is usually only one test is done on the NHS and that is the TSH, it really is very unreliable and not fit for purpose, as an example I now test privately and regularly, as well as being a member of Thyroid UK, and also a member of their forum on here.

Once I tested I found my Thyroid function to be very low, and one of those symptoms is a lower body temperatures,. In decades gone by and currently with the more knowledgeable doctors, a basal temperature is taken in the morning before you get out of bed! Mine was very low. I an now vastly improved on thyroid medication with attention also to my vitamin D, B12 and Iron, alongside my multi disease profile. I no longer feel the cold to such and extent, it used to be impossible, two duvets, two hot water bottles, several layers and still cold.

These are the sort of tests I do: TSH, FT4, FT3, TT4, Thyroid Peroxidase Antibodies,Thyroglobulin Antibodies, Ferritin ,Folate, Vitamin B12 (NOT ACTIVE B12), C Reactive Protein, Vitamin D (25 OH), REVERSE T3, Insulin, HbA1c, Magnesium.

I am presuming as you have landed on this forum that you have a diagnosis for Hughes Syndrome/APS?

MaryF

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thank you for your reply. being new to this, I don't understand all of your information yet, but assume my doctor will. for now, I am having emotional overload that I might not be alone in this. thank you so much.

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Your doctor will be insistent that only the TSH is needed, that is why above I have given you an example of the private thyroid tests and associated tests. MaryF

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oh. I am in the states. where would I get these tests, and how would I fix whatever results I get?

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Ok, just have a look on line, and google private blood testing companies... also in the state some functional doctors alongside your normal consultant, may provide a choice of Thyroid treatments, best of luck, we all learn off each other on here. If you really are struggling to find something, come back to me later and I will try and help you with regard to where you are. MaryF

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There are many reasons for this unpleasant feeling. For me, it feels as if there is a block of ice inside my back. Do you also have cold extremities?

I think MaryF's advice to get your thyroid checked is good advice.This can also happen with other autoimmune conditions (which includes some thyroid conditions). It is often the case that we can have more than one autoimmune condition.

Please discuss ALL your symptoms with your specialist -even if you don't think they are relevant or connected!

With good wishes,

Ros

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Yes, thank you. In fact, my back will even seize up and I have nightmares that I am being shot or stabbed in the back. That's if I get to sleep in the first place. I often cannot sleep if I am too cold. The cold is not limited to my back, my husband says my hands are often cold and feet are ice boxes at night. It seems I can get through the busy day okay, but as soon as my heartbeat starts to settle down, my temperature drops and I become miserably cold.

Thank you all so much.

I will at least start looking at what tests were already done for thyroid and see what else I can get. They always tell me my thyroid is fine, but I have to compare these tests with Mary's and try to figure some things out.

I thought this was primary APS, but there may be more to discover unfortunately. Thank you all. I am grateful you are out there.

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Hi Esolt APS/Hughes Syndrome/Sticky Blood is an autoimmune disease. Unfortunately, some of us can have it with other diseases. If you have it alone it's called primary APS and if it's associated with other autoimmune conditions it would be secondary.

One of the conditions that often runs with it is autoimmune Thyroid disease or Hashimotos. I have this sling with Sjogrens Syndtome and it's often referred to as the big trio, lupus is another common co-traveller. One of the common symptoms of a low Thyroid is cold extremities. That is why Mary has mentioned it above. Unfortunately there is a lot of disagreement at the moment about how Thyroid disease should be treated along with the medications prescribed. The common and usual treatment is Thyroxine (T4), however many of us find this is not adequate and because Drs are unwilling to prescribe T3 which we need, as our bodies have to convert T4 to T3 in order for it to get to our cells, we have to self medicate with NDT which is a combined medication but only available via private prescriptions or getting it online. As Mary says get the first step done by being tested and then let us know. We can point you in the right direction after that.

The other condition that can cause coldness is Raynaulds due to poor circulation, however I think if you had that you would also notice a change in colour in the places you feel cold.

Please also discuss this with your treating Doctor.

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So much good information, thank you.

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Welcome, I always felt cold when I was on coumadin/warfarin. Are you on coumadin/warfarin? What treatment are you receiving? Where in the states are you located?

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Thanks for talking. I am in Virginia and so far, I have only been told to take a baby aspirin every day. Other than headaches, I have not made clear my symptoms to my doctor, as frankly, I never went, and I am only just beginning to read and understand that the hives and other things may be a part of this. She thought B2 might help with my headaches, and it does some. She seems good and open to discussions, so I feel free to start with her. Again, thanks!

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Many of us, in the States as well as elsewhere, have had to search and search and search before we find a doctor who knows enough, or is willing to listen to the patient enough, to effectively treat our disease. APLS, aka antiphospholipid syndrome, aka APS, aka Hughes Syndrome, aka Sticky Blood Syndrome, aka (my favorite!) Sludge Blood is only a recently discovered malady (1984.) And, it, along with a number of other chronic ailments, is more prevalent then many want to accept.

So, it is again, essential to find a doctor who has a good track record with APS patients. Here in the state, a site (which has recently been going through reorganization) APS Action is a good source. Or, you can get recommendations from this forum as to which doctors we consult with in which parts of the US.

I’m from West Virginia, and was diagnosed by a doctor in the Cinn Ohio area. PM me if you are close enough and would like his info.

Gina

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oh, thank you! I am in Virginia, far from Ohio, but not so far that I may not need your help if I cannot make progress here. for now, I am hopeful that my doctor here will listen, help and refer, but we will see. I have not figured out the private message part yet, but will if it comes to that. thanks so much!

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I dream of feeling cold instead of forever dripping in sweat, on the upside the heating never goes on but several fans are on the go day and night from April to October. No one has ever been able to explain it, I'm sitting here in London in mid November with the french doors open wearing shorts.

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ha!

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I'm in the States too, in Colorado.

Can you get to an endocrinologist? That is their specialty. Going to see that specialist is how I got my thyroid issues straightened around, years ago. I also have the big 3.

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thanks!

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Duke hematology has a good track record with APLS - thats where I went for my hip replacement.

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Thank you so much!

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