cold at night

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

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

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

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.

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?

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

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.

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.

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