Fever Question- Could This Be An Issue?

[jenglynn]

This has gone on since I was a young child. My normal body temperature is anywhere from 96.5 to 97.1. Always has been. I can count on ONE hand with fingers left over the number of times I have had an actual "fever" over 99 degrees, no matter HOW sick I am.

I have been diagnosed with an autoimmine deficeincy, tested positive for the polyclonal hypergammaglobulemia but we are still waiting for the more definite test to come back with the "official results" of what kind of disease it is. I have been told that there is a 50/50 chance of that test showing an actual "disease". If not... they just know I have an auto immune problem and they can't even be certain that that the auto immune problem is causing the autonomic problems. Sigh. What ARE you sure of????? (This is all at Mayo).

My question, could the fact that I do not get fevers be related to either of those factors- autonomic or autoimmine? I am not sure which would affect it? I had doctors telling me that it is great that I don't get fevers because my body is doing its job but somehow that doesn't seem right to me considering how sick I have been at times and how long it takes to recover. Quick example, last year I had acute appendicitis- when they took it out it was about 80% toward rupture so it was very advanced and I had been sick a while. My temp right before surgery was 97.1. In fact, I had doctors questioning the dx at all because I had NO fever which just doesn't happen with advanced appendicitis and they looked at my white cell count which was only "slightly" elevated but not by much... it was basically exploratory surgery because my pain was consistent for it but they just weren't sure (and I think didn't believe me and were shocked to find an almost ruptured appendix).

So am I lucky to not get fevers or is this something that has to do with my compromised immune or autonomic system. It seems that a fever would be a good thing because it helps fight off infections, which my body does a poor job of doing (I have been documented to have had chicken pox 3 times, all three times.. NO fever). Just not sure why I can't get a doctor to agree that the fever issue is an issue at all.

Thanks for any input!

Jen

[Chaos]

I know that temperature regulation issues fall under the autonomic realm so I would think that fevers/no fevers would also. It is interesting that your white count was barely elevated.

My husband had a similar issue with a gallbladder. He was REALLY sick but all his labs were "normal" and he had no fever etc. I had to flat out refuse to leave the ER just to get them to do an ultrasound. When the surgeon took him into surgery she was still not sure that the gallbladder was his issue. When she came out she was shocked by how "sick" the gallbladder had been to the point that it had done damage to the liver. She then said that some patients "hide" their symptoms. (Obviously not intentionally.)

I wonder if you've had these autonomic/autonimmune issues for so long in a somewhat asymptomatic manner and your body has accommodated them so that things had to really get whacked before your body just gave up and reacted like a "normal" person would with similar BPs etc. When I had my TTTs (all 4), my BP dropped into the "unfindable" realm and finally they found it at 30s/20s. BUT, I never passed out. Felt lousy and had lots of other reactions but didn't pass out. The first one I just remember the nurse saying over and over and over..."I can't believe how much your body will compensate for...." The cardiologist refused to believe the numbers the first two times but on the third one she finally just said.. "you really should be passing out with these numbers." Well geez....sorry I'm not.

Anyway, it just makes me wonder how much and how long our bodies have accommodated us and then, as noted in another thread, there comes a tipping point where it just gives up and we suddenly find we have real issues. So you're not having fevers all these years...wonder if that's just another one of those signs that this autonomic stuff has been happening for awhile and just chose to make itself apparent in the recent past?

[jenglynn]

Thanks so much!! I think you are right. My mom told me today that I had one high fever at 6 months old. I had developed a very rare strain of influenza- not sure but I was born in 1974 and I guess there were some rare strains going on. My parents told me I was completely unresponsive aned by the time I got to the hospital I had a fever of 106.8. I stayed unresponsive, almost catatonic the entire time I was in the ER and they admitted me and I was in the hospital. They struggled for days to get my fever down and most of that time I remained in that strange state. After day 7 I guess my fever finally broke and I finally started to improve. The moral to the story is that according to my mom she doesn't remember me ever getting a fever after that. I actually had chicken pox 3 times- all three times without a fever. The first time it was a very severe case with internal blisters and I was very sick (I was 8) for over 4 weeks... but never a fever. Had a mild case in my mid-teens, still no fever. In my early twenties, I got it again, again this one was another serious case and I was very, very sick as is usually the case as you get it as you get older. But again, no fever. I can only remember once that I had one with another flu case several years ago and my influenza lasted close to three weeks without a fever and I was so sick. I actually had to be hospitalized. Finally, one night I toward the end of the third week I developed a fever of 99.7 in the middle of the night, fever broke after just a few hours and I started to improve.

I think you're right. It is just how our bodies compensate. I am not sure why don't get fevers and it is frustrating at times because I feel like it is bad enough I am always having to "prove" myself to doctors to convince them of my severe diagosis (better now that it is documented by Mayo) but whenever I go into the doctor for any infection I never have a fever or elevated white blood cells, or if they are very mildly so. It seems like they never believe me because I don't present classic symptoms and rarely believe that I don't get fevers. Why doctors do not treat us as independent individuals? I try to explain the autonomic / autoimmine issues but it seems to go right over their heads.

I was just wondering if anyone had this experience but it is probaby another "Jen-ism" which means it is one of those symptoms that I have that doesn't fit in anywhere and makes no sense to anyone at all. Add it to the list

Jen

[Chaos]

Yes I hear you on how frustrating it is on having to "prove" ourselves to doctors all the time. So be prepared for this version of it... You go to a local doctor with symptoms that are perhaps similar but exacerbated over what you had when you were at Mayo (or insert whichever big center you've been to). The doctor looks at you in absolute shock and says "well if you went to Mayo and they couldn't help you, what do you expect me to do?" And then they refuse to even touch you or do even the most basic tests.

I had this happen a couple of times. Once when a physician SENT me to the ER with a whole list of orders, an IV already in place and had called ahead and talked to an MD at the ER about what he wanted done. After waiting 7 hours the doc I saw literally said the above to me, refused to run an EKG or give me any fluids and sent me home after doing absolutely NOTHING- (except for charging my insurance $2700.00).

The reality is that medical science DOESN'T know a WHOLE lot more than they DO know. Doctors are trained to never admit they don't know the answer (or at least this is what my brother, who is a doctor, insists he was taught in medical school) so if you present with something they can't explain they immediately try to push it off as either psychological or hypochondria-cal or you're just making it up...as though we sit around trying to think up these bizarre things to get attention??? Really?? I had a great life that I LOVED before I got sick with this. Everyone should be so blessed as I was and as content as I was with my life when this struck.

Sorry, didn't mean to go off on a rant like this, but I do think the human body is truly amazing at how it will continue to try to reach homeostasis and will accommodate almost miraculously to keep us functioning. ...Until it doesn't. Who knows what happened in your body with that long term fever when you were so young and how it might have shifted your autonomic system or what other patterns it established as a "norm" after that highly abnormal situation.

I had a sister-in-law who had a somewhat similar situation of having very high fevers as an infant. Hers would spike very briefly though and very high, many times. She then went on to develop a very severe seizure disorder and profound mental retardation. So interesting how a somewhat similar situation resulted in very profound differences in outcome. Or perhaps it was a very severe autonomic abnormality initially that set off the fevers and seizure disorder? Who knows. Maybe if docs would quit blowing these things off they might actually find some answers.

[arizona girl]

Hi Jen, hope your holding up, until you get better answers. I've read a few of your posts hopefuly I'm remembering this right and they were yours, about the immune defeciency with low iga and igg and now the polyconal gammopathy. I can see why your doctors are waiting for the rest of the labs, the pg points to other types of testing.

As far as the fevers I can relate and may have an answer on that. When you are immune defecient you don't have a normal defense system to fight stuff off, a fever is a defense system to kill off invading bugs/bacteria. When you don't have immunogolbulins you can't mount a normal fever and thus can't fight off the infections. It also possible that the high fever you had damaged your nerves that control temperature. Do you often get overheated and/or chilled easily? That would show some nerve damage.

When my colon ruptured the highest my fever got was 100.1, with a raging infection/pertinitis and wbc in the 20,000. My temperature is usually lower too, and I feel like I have a fever at 99.0. I was getting these really low grade fevers in the afternoons, or when talking on the phone, regularly for years, that would go away as soon as I laid down. I have low igg and igms. Since having had a lot of antibiotics in the last few years and then starting the ivig, I've had none of these type of fevers and my wbc has been normal for the last six months. My BP/HR are improving too! I still have pain and discomfort on standing or in uncontolled temperature environments, mostly with hot air.

If you are the one with the low IGA, you my not be able to have an IGA ivig product, I think. You have to been very careful what they give you. You can read about the different types of immune diffeciency at primaryimmune.org. Do you know yet what brand they are giving you?

Hope I got your info right I'm still pooped from the holidays and have been to tired to post and reread posts.

[jenglynn]

Thank you Arizona!! I DO think I am on the low IGA.. not sure of the brand. I am definitely checking out that website tomorrow. I am not sure how well I am doing on it. The ONE good thing is that my Ferritin went from 8 or 10 to 70 after my initial five doses I was given inpatient. This seemed impossible to me. I have always felt "anemic" but hemoglobin and hematocit was always normal. Just the low Ferritin. Well, this blood test NOW says I am technically anemic because now my hemoglobin and hematocit are both low. Hemoglobin went down, not a lot... was 14 last month now about 9.6 I think? Hematocrit had dropped about 8 points which isn't huge but still a drop. I don't know if these are normal with IVIG or not.

I don't tolerate the IVIG well though. My blood pressure gets really high. Normal BP for me is about 90/70 or 80/60 which I know is low but its always been that way. When I get the IVIG it gets really high- the highest so far was 190/135 which for my body was crazy. And my pulse was REALLY low, like 41. They stopped it because of my effects. Called my Mayo neuro and said that he expected this and that I would have difficulty with it becuase of the severity of my AN and he really wanted to continue treatment so they were not to increase the dose at all. Just let it run the same rate the whole time and see how that went. That night I ended up with a horrible rash. Last Thursday I had my next dose and the same thing happened- BP rise (not as high but still 168/125 which is still high for me. And most concerning to the infusion nurse was when I arrived I was my usual paper white pale self and within 30 min in my face was bright red, like I had a horrible sunburn. They called again and an allergist came to see me and my rash and hives were developing and he said that he was afraid this was the final step before an anaphylactic reaction. So, he called my Mayo doc who still wants me taking it with constant monitoring.

So the pharmacy is looking for a new brand to see if that helps. The only "benefit" has been the Ferritin rise, which is good but my autonomic symptoms are not any better as of yet. And the treatments make me so sick. I have a horrible headache, a migraine type one which is excruciating for the rest of the day (I am sure made worse by the drastic rise in my BP) and I feel like I have flu like symptoms the next day. My whole body just hurts, even more than usual which is significant enough as it is. I can't eat. I've had to go in for saline the last 2 weeks the day after because of syncope and dehydration. Just no fun. If it works, then of course it is worth it. but I guess I need more info and I will definitely be looking into that. Why is it that the low IGA would not work?

I did talk to a doctor friend of mine who doesn't treat me or anything, but he said that the high fever when I was a baby could have basically "broken" my thermostat and now I am unable to get fevers but mostly attributes it to my autoimmine dysfunction. I feel the same way, it is rare that I would EVER get past 98. anything but if I am at a 99.0 even I feel like I have a raging fever. I am ALWAYS freezing. ALL the time. I have no ability to regulate my temperature. I struggle with hot weather too, mainly because of blood pooling and overheating. My face turns red easily and I don't really sweat ever so I am prone to heat exhaustion.

Thanks for your advice! I am going to research that website tomorrow and see what I can find out. I feel a little silly because I am no where near as educated as all of you in this disease and I just went along with a lot of things at Mayo without asking enough questions. Not to make excuses, but I was so ill and was having some organ shutdown and hardly remember most of the weeks I was there. I also received another pretty bad concussion while there (3rd in 3 weeks) from a fall after syncope and my brain is still not recovered. This is concussion number 6 or 7 and definitely can feel the cognitive change after this last one. Scariest thing of all for me.

Jen