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Sjogrens Topics => Living With Sjogren's => Topic started by: Carebear on May 10, 2019, 11:04:16 AM

Title: Night sweats, low body temperature, feel cold all the time, please help
Post by: Carebear on May 10, 2019, 11:04:16 AM
Dear Sjogren's  friends,

I just feel like crap lately!  I'm so tired of complaining to my spouse about this, so I've come here looking for help, answers, and something to go to my doctor with.  Please give me your thoughts.

I have terrible night sweats, firstly.  This makes sleep impossible.  I sweat a lot during the day as well,  but not as severely.

I am freezing all the time.  It's 20 degrees Celsius outside (high 60s F)  and I'm wearing a winter jacket, a scarf, and a long sleeved shirt.

My body temperature often is around 97 degrees Fahrenheit.   My heart rate runs in the low 60s, and sometimes lower.

I'm uncomfortable all the time.  I can't put my finger on how to describe the severity of this feeling.  Just very unwell.

I gained 10 pounds this winter,  when in the last seven years I couldn't put on an ounce.

I fall asleep at red lights and while typing at the computer.

It's not menopause.  That happened over 20 years ago.  My thyroid bloodwork is normal.   I have no infection.  The only thing that is abnormal is that my white blood cells are low.

It sounds hormonal to me, but what hormones?  I'm blurting,  I know.   I've just had it.  I need help!
Title: Re: Night sweats, low body temperature, feel cold all the time, please help
Post by: Maria3667 on May 10, 2019, 11:24:28 AM
Hi CareBear,

That sounds awful! Hope you recover soon.

Which type of medicines do you take?
Title: Re: Night sweats, low body temperature, feel cold all the time, please help
Post by: Linda196 on May 10, 2019, 11:25:44 AM
I think your doctor might be receptive to a full hormonal work up starting with adrenals (cortisol levels and challenge). these symptoms are significant, especially the 'falling asleep at red lights".

Please see him or her as soon as you can, doesn't need to be an endocrinologist, a GP can get the ball rolling.
Title: Re: Night sweats, low body temperature, feel cold all the time, please help
Post by: Bucky on May 10, 2019, 03:38:43 PM
((Carebear)),

I'm sorry you are feeling so poorly.   :(  I don't have any answers for you, but Linda's advice sounds like a great place to start.  (Since she's a nurse, I would trust her advice and wouldn't hesitate on  anything she suggests.)

I hope you can get in to see a doctor soon so they can figure out how to help you.

Sending a long-distance hug.

Bucky
Title: Re: Night sweats, low body temperature, feel cold all the time, please help
Post by: Carolina on May 10, 2019, 04:32:07 PM
Dear Carebear,  I have finally decided that I'm in a state of chronic inflammation (like a flare, but it never goes away).

This chart is from an NIH publication (linked below).

Table 5.
Common signs and symptoms in chronic inflammatory systemic diseases

Overt symptoms                              Change

Amenorrhea                                    Increases
Avolition                                            Increases
*Body temperature and sweating    Increases
Bone loss                                    Increases
Cachexia, cachectic obesity            Increases
Circadian rhythms of symptoms    Become apparent
Coagulation system                    Activated
*Disposition to pain (skeletal muscle, joints, other)                        Increases
Erythrocyte sedimentation rate                                                Increases
*Fatigue                                                                                        Increases
Food intake, appetite (finally body weight), malnutrition                Decreases
*Headache                                                                                Increases
Heart rate, sympathetic nervous tone                                        Increases
*Hemoglobin per erythrocyte, inflammation-related anemia        Decreases
Hypertension and volume expansion/water retention                More often
Insulin resistance                                                                        Increases
Interleukin-6 serum levels (one example of a cytokine in the blood)   Increases
Libido, erectile dysfunction (loss of activity of the HPG axis)                   Decreases
*Numbness                                                                                           Increases
Parasympathetic tone                                                                           Decreases
*Physical activity                                                                                   Decreases
*Proinflammatory high density lipoproteins (HDL), dyslipidemia           Increases
Protein in the urine                                                                                   Increases
Serum albumin                                                                                   Decreases
*Sleeping problems                                                                                   Increases
*Stress negatively influences inflammation                                           Becomes apparent
*Symptoms of depression                                                                   Increases
Vertigo                                                                                                   Increases
*Weakness                                                                                           Increases

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4753361/

Table 5 occurs deep in this article.  The article is comprehensive and technical in places.

I printed Table 5 because I know these are many of my symptoms.  I am completely miserable.  I have severe arthritis which is almost intolerable with inflammation.   At times I really wonder if I can go on.  I have an 'as needed' bottle of Medrol (methylprednisolone) but only 17 4 mg tablets.  If I take one of them, I feel better for less than 24 hours at this stage.   The 12 hours before during and after sleep are mostly agony.

I probably would respond positively to regular higher doses of steroids, but the cost of that treatment in damage to my body of others kinds is so very high.

The 'bottom line' of this research is that Chronic Inflammatory Disease occurs later in life, and thus is passed along to each generation because we reproduce before the CID becomes so terrible and life threatening.

I have yet to see any real treatment, aside from steroids.  Changing diet, exercising and other methods of alleviating symptoms, have always seemed to me to be ineffective against the very huge impact that CID is having on my life.

I don't know what to do.  I plan to ask my Immunologist but I know this is beyond her scope of specialization.  I guess I could ask for one of the very expensive tests that measures cytokine activity, an indication of inflammation.  I guess the bottom line is what do we DO with information?

This is a big time condition, one of the indication for CID is autoimmune conditions, of course.  And my Immune Disorder is included as well.

Sorry I'm not more 'up beat'.

Elaine
Title: Re: Night sweats, low body temperature, feel cold all the time, please help
Post by: irish on May 10, 2019, 11:15:01 PM
Sorry you are suffering. Linda gives sound advice. Also, sometimes when we perspire a lot we tend to get the chills more often. It does help to have a sweater or long-sleeved shirt to put on over your "sweaty" body sometimes to help prevent cooler air from triggering the chills. Good luck and please keep us updated. Irish
Title: Re: Night sweats, low body temperature, feel cold all the time, please help
Post by: trejonina on May 11, 2019, 07:08:42 AM
Hello, have you tried Turmeric, and Omega 3 ? They're supposed to help with inflammation.Do you avoid sugar, flour,gluten and dairy? They cause it. Good luck!
Title: Re: Night sweats, low body temperature, feel cold all the time, please help
Post by: jkcc2323 on May 13, 2019, 07:24:38 AM
Ditto for turmeric, and a form that is hydro-soluble absorbs better!
Title: Re: Night sweats, low body temperature, feel cold all the time, please help
Post by: Carebear on May 13, 2019, 08:09:24 AM
Thank you everyone for your replies.   It's been a very difficult weekend,  especially now my digestive system has decided to go berserk too.  Actually it started a week ago but it was much worse during the last few days, with severe diarrhea becoming my new companion.  I am trying to keep hydrated.

Linda,  I will be pursuing the hormonal workup with my doctor next week.   I wish I were able to see her sooner but that was not possible.

Something I left out earlier was that I have seen a cardiologist regarding the "sleeping at red lights" and feeling faint with a low heart rate.   He has ordered a second Holter test and an echocardiogram.  I expect this will just rule things out.

I have also had a home sleep study with results indicating mild obstructive sleep apnea.   Because I do not snore I can only assume I am choking or gasping for air while sleeping.   I am waiting for a sleep study to be done at the hospital, however this will take forever due to huge waiting lists.  I will follow up with my doctor as now there may be more reason for urgency for this detailed study.  Sleep apnea can cause night sweats but not diarrhea...hopefully!

I cannot take turmeric because it really hurts my stomach.  None of my medications have changed in some time so side effects to drugs or supplements seems unlikely. 

I will let everyone know how this rolls out.  It may even help someone else eventually.

Title: Re: Night sweats, low body temperature, feel cold all the time, please help
Post by: SjoGirl on May 16, 2019, 01:16:31 PM
So sorry to hear this CareBear. This sounds just like how I felt early in my illness and when I have a major flare. I feel like I have the flu but I don't, have the sweats and cold at the same time, I am lethargic, etc.

How low is your white count?

Also, I have found that for me it is possible to have an infection without having a fever. If diarrhea continues you might ask for a stool test. I did this in the past and learned that I had an eColi infection. I never had a fever with it just all of the other symptoms.
Title: Re: Night sweats, low body temperature, feel cold all the time, please help
Post by: irish on May 16, 2019, 03:44:51 PM
Also, sorry to hear you feel so awful. Have you been on a new medication lately or been on antibiotics that could trigger the diarrhea. Something that will also have to be checked out. Good luck. Irish
Title: Re: Night sweats, low body temperature, feel cold all the time, please help
Post by: Carebear on May 16, 2019, 05:29:55 PM
Hi SjoGirl.  My white blood cells run low about 50 percent of the time,  and I get bloodwork done each month.   I run about 3700 cells per cubic millimeter of blood, so technically leukopenia but not extremely low either.

Hello Irish.  No new medication or changes in dosage either I'm afraid. And definitely no antibiotics. 

The good news is that I am feeling somewhat better for now.  And I'm just beginning to realize that this event began a couple of months ago,  creeping in very slowly.  So slowly that I didn't take notice until it hit me very hard.
 This seems to confirm the probability of it being hormonal.  But we will see what my doctor thinks next week.
Title: Re: Night sweats, low body temperature, feel cold all the time, please help
Post by: Carolina on May 18, 2019, 05:09:06 AM
Dear Carebear,

When I suddenly developed 'gastric problems' including diarrhea, it turned out to be SIBO.

Small Intestinal Bacterial Overgrowth, in my case, is the result of neuropathy in my small intestine.

The test is fairly simple (breath tests over an hour) and the  treatment is 10 days of antibiotics.

I suffer for a year before I asked about SIBO.  The FODMAP helped some, and at the worst I also had to eliminate glucose and lactose.   Now I can eat everything with no problem.

It's a possibility.

Regards, Elaine
Title: Re: Night sweats, low body temperature, feel cold all the time, please help
Post by: Carebear on May 18, 2019, 08:31:00 AM
Elaine, did you have night sweats as well?  And did you dress for the Artic, but everyone around you had shorts on?
Title: Re: Night sweats, low body temperature, feel cold all the time, please help
Post by: irish on May 18, 2019, 12:35:36 PM
Looking at your meds and wonder if docs have checked out interactions with your herbs. I know that many of them can cause issues on their own that are not always shown in literature.

Also, with the IVIG-.have you changed products lately? Have they checked to see if you low WBC are related to the autoimmune disease or the Sjogrens. I would think that could cause a person to feel lousy. Also, with all you have going on has anyone considered that you might have a low grade infection. This can cause sweats and chills plus the white count doesnt always rise in people like us when we have infections.

 I have felt so lousy for a couple of years and have so many things going on surgeries, etc. Meanwhile I am so fatigued but hey, I have autoimmune and Myasthenia gravis and have been to doctor so many times. I got so none of my other antibiotics helped much ( I have so many antibiotic allergies) and have germs that don't respond to other antibiotics.

I was ill in Dec with Gram negative Sepsis which can be fatal....I had a good infectious disease doc and he worked magic with the antibiotics I could take and I recovered. He also chewed me out for not having my penicillin/cephalexin drug allergies tested for accuracy. He was right. I got that allergy testing done and am not allergic to penicillin or cephalsporins. Just in time to take Ceftin for an infection.

Long story...hang in there I have a new doc & he is Good. I told him my history plus how I react to infections. No fever, sometimes sweats and sometimes chills. Seldom much drainage and (the important part for me) my history of getting infections from normal body bacteria that overgrow and make me just ill enough to feel like my life is going down the drain. Takes a long time with these infections for me to get to the point that I realize I am really sick.

He put me on Ceftin 500 mgm 2xs day for 7 days for a sore scab like issue in my trachea that I can't hardly cough or hack out every day, sore gums lower jaw with pain and increased difficulty with eating and dentures getting tighter, bad back ache mid to low lumbar,  symptoms of bile acid diarrhea being treated by GI  but acting like bacterial overgrowth with bad odor, increasing fatigue, sweats, chills and terrible bladder pain in the trigone area in bladder that is a 50 year long standing problem but never have positive urines.

I called back after I was done with antibiotics and told him that all of those symptoms were better after antibiotics. Yesterday I had another colonoscopy with laser of 3 areas for arterial venous malformation in my ascending colon. I told my GI doc that I thought I needed antibiotic with this procedure. Told her that after having 3 colon preps last fall  and colonoscopies I had ended up with gram negative sepsis. Told her no ones fault, but that I as weird and with invasive procedures I most often need antibiotic. She said "I will check with the pope" referring to my new doctor. She came back and said "the pope agreed with you" and he ordered Rocephin 1 gram over 30 minutes IV.

Now today the back ache I had left seems better. I will know for sure in a few days. My throat is a little less sore. Now I am going through this long dissertation so you can see how this works. I may have had some low grade infection in my colon since my last laser treatment of 6 arterial venous malformations along with 9 clips in area last Oct. These low grade infections of normal body bacteria happen to me often and usually can't even be cultured. My immunologist has told me to watch for them and be sure to get antibiotics.

Just hope some of this info can help....I know it is confusing and looooong. Irish

P.S. Over the years I have gotten these normal bacteria infections in my sinuses, and also in the back of the throat, etc. Just enough change for me to think that something was up. The mouth contains over 7-- bacteria normal to our body and with the autoimmune and possible immune issues we have it is really easy to get these overgrowths in the GI tract and in the lungs and nasopharynx. Very few doctors are trained to be aware of this but those of us with AID need to keep this in mind.
Title: Re: Night sweats, low body temperature, feel cold all the time, please help
Post by: Bucky on June 10, 2019, 07:29:32 PM
Carebear - how are you these days?  Thinking of you!

Bucky
Title: Re: Night sweats, low body temperature, feel cold all the time, please help
Post by: Carebear on June 10, 2019, 10:53:58 PM
Thanks, Bucky.  It's the craziest thing.   After two weeks of night sweats and diarrhea, it stopped abruptly.  I still feel cold and have a low body temperature,  but that's all.

Now the crazier part.  It fells like my body has somehow been "reset".  I feel more energetic than I have in many,  many years. I can't explain it but I'm enjoying it while it lasts.

As for my doctor,  she did run lots of bloodwork and my TSH (thyroid) is plummeting again,  without a change in my synthroid dose for a few months.  I think it is 0.2 now.  6 weeks earlier it was 1.20, and 2 months before that it was 1.65.  It's been running below 0.3 for much of the last year regardless of how low my synthroid dose went.  I'm taking 75 mcg right now.  The lowest I've ever taken.

On my last visit we talked about the possibility of my thyroid "working " on it's own 24 years after radioactive iodine treatment.   She has seen it happen before.   I don't know where that leaves me.   I see her again in a few days to discuss my results.

The only other test that was out of range was my ALP (Alkaline Phosphatase), which was high.  This may also be pointing to hyperthyroidism.  My white blood cells are low,  but they always are.

Hopefully I will have a game plan very soon.
Title: Re: Night sweats, low body temperature, feel cold all the time, please help
Post by: Nancy1950 on July 29, 2019, 05:30:18 PM
Hi Carebear,

I am just seeing your post now - 2 months late!

You might want to look up Wilson's Syndrome (or disease) of the thyroid. Apparently it's a hypothyroid condition in which the standard thyroid tests come back normal, but in which cells can't hold onto the thyroid hormone. Therefore, you can be hypothyroid, but everything looks normal on blood work. The symptoms are exactly as what you describe. It might be worth checking in to.

Nancy
Title: Re: Night sweats, low body temperature, feel cold all the time, please help
Post by: irish on August 01, 2019, 02:42:38 PM
Pardon my long post on the first page. I was trying to thin of everything and anything that could be affecting you.

However, Linda is right about falling asleep at the red lights. Have yoyo been checked for narcolepsy? This is a condition that can reallyt ruin you life is left untreated. My DIL has it and when in college her need to study screwed her up even worse as she had undiagnosed narcolepsy. She ended up on a very regulated drug for about 1+ years to reorganize her brain so that she could sleep. She also sweat at night just terribly.

Also, as Linda said a hormonal study would be wise. There are a lot more secreting glands that affect our health than our thyroid.I think in view of all your issues ( would make a copy of this post and show your doctors) I would be very insistent on further studies and if need be get second opinions from experts at a teaching college/hospital that caters to medical students of all types. Good luck. Irish
Title: Re: Night sweats, low body temperature, feel cold all the time, please help
Post by: Carebear on August 01, 2019, 04:58:09 PM
Dear friends,

This is a very difficult issue to update.  And so complicated.  Every time I think I am in the clear, something flairs up.

I am no longer falling asleep at red lights, thank goodness.  The night sweats disappeared, and now I just get grotesquely overheated without sweating.  Always at night, coincidently.  After many, many tests and adjusting/eliminating medications, we are now zeroing in on the gastrointestinal system.

As I said, I have had SO MANY tests.  Hormonal panel including thyroid, liver enzyme tests, echocardiogram, 48 hour Holter test, ultrasound and x-ray of my abdomen, chest x-ray, stool cultures, I was even tested to see if I have been eating gluten (which I am not because I have Celiac disease).

Here are some significant test results: 

Heart related - I have Premature ventricular contractions and mild leaking heart valve - these tests confirmed my symptoms but fortunately are "harmless".

Bloodwork - Consistently Low White Blood Cells and Consistently Elevated Alkaline Phosphatase.

Everything else was well within normal range, or was only slightly out of range for a singular test.

My family doctor is referring me to the GI specialist for a swallowing study and an endoscopy.  Maybe a colonoscopy, but oh how I hope that isn't necessary.  I am having a barium swallow in the meantime just to get the ball rolling.

So, liver is good, heart is good, bones are good.  The next culprit to investigate specifically for elevated ALP is the gastrointestinal system.

But really, I haven't any concrete answers yet. 
Title: Re: Night sweats, low body temperature, feel cold all the time, please help
Post by: irish on August 01, 2019, 09:24:57 PM
Have they checked out vagus nerve involvement? The GI tract can also be affected by vagal nerve issues. Good luck with this. Irish

P.S. I also wondered if anyone has considered a low grade simmering infection. Irish
Title: Re: Night sweats, low body temperature, feel cold all the time, please help
Post by: Carebear on August 01, 2019, 10:34:44 PM
Excellent questions, Irish.

Yes, a low grade simmering infection in the GI tract has definitely been considered by my Family Physician.  She had a stool culture done which included GIARDIA LAMBLIA, CRYPTOSPORIDIUM PARVUM/HOMINIS, SALMONELLA, CAMPYLOBACTER JEJUNI/COLI, SHIGELLA, and Enteroinvasive Escherichia coli.  All negative.

I almost never have a body temperature over 97.5 degrees Fahrenheit even while I was having night sweats or when I feel so overheated I could melt.  But maybe that means nothing with Sjogren's. 

How is the vagus nerve checked out, Irish?  I hadn't thought of that one before.  You may be onto something.  What sort of specialist would address the vagus nerve?  A neurologist?  GI specialist?



Title: Re: Night sweats, low body temperature, feel cold all the time, please help
Post by: irish on August 02, 2019, 11:53:52 AM
I have no idea which doctor is the one to see. Since you are doing a GI workup ask that doc and see what he says. This nerve is known for a lot of weird things. Sometimes the episodes will come, last a couple seconds or minutes and not show up again for a long time. It is something that can be very hard to nail down. Do a search on vagal nerve dysfunction and do not go into panic mode. Lots of info documented but elusive as heck.

There are some things that are well known but I can't say that I read much about a "cure". Seems like it can be sort of like autoimmune.....hard to identify. The nausea, dizziness, etc swell known. I have had "spells with vagal nerve dysfunction with diarrhea, nausea, etc and thot I was going to die. Profuse perspiration, etc that passes. Knowing that my symptoms were most likely vagal nerve issues gave me hope for living in the midst of the severe nausea, etc.

Every doctor will give you different info and none of them will be wrong.....that is why I asked the question. Such issues and improved at times can often be related to the nerves of the body. So if it sounds like I am talking a lot and not saying a heck of a lot just wait til you see all the info under vagal nerve dysfunction. Good luck. Irish