RE: Body Temperature/Fevers

[Guest guest]

The easiest thing is get him to take your temperature when you don't have a fever and let him explain why all his thermometers are reading low.

 

Ian 

Enid (and everyone else!), Hi! I'm sorry it's taken me so long to write back to you on this fever/low temp issue. I'm up at Mayo Rochester currently and they're keeping me pretty busy. The fever counting principle was pretty easy. Basically, she just told me that I would use the same scale as a person with a 98.6 degree normal temperature. For instance, if you are normally 98.6 and you go up .4 degrees, that would put you at 99 (a low-grade fever). If you start out at 96.8 degrees and you gain .4 degrees that puts you at 97.2 (if my math is right), but that would be the equivalent of a 99 degree fever for someone with a regular body temp. Does that make sense? If not, let me know and I'll try again.

On a totally different note, I met with my new PSC doc at Rochester Mayo. I was speaking to him about the fact that I'd been running fevers lately and that it was worrying me. He asked what my temperature was and I stated that when I'm not sick I run a 96.8. He interrupted me and told me that ALL people were 98.6 and that I could not possibly be a 96.8. I repeated again that I was a 96.8 and he again told me that was impossible and that everyone was a 98.6. I tried to (politely) argue with him but he shut me down. I finally just told him that I was running 2-3 degree fevers and left it at that. I'm not sure yet if I'm keeping this doctor or if I'm going to ask for another one (there were more issues than just the temperature thing), but I found it very frustrating that he wouldn't acknowledge and didn't seem to know that low body temps was a fairly common PSC thing! Has anyone else run into this kind of adamant denial about their symptoms or PSC

related oddities?Sandi in VA

-- Ian Cribb  P.Eng. (6...

[Guest guest]

The easiest thing is get him to take your temperature when you don't have a fever and let him explain why all his thermometers are reading low.

 

Ian 

Enid (and everyone else!), Hi! I'm sorry it's taken me so long to write back to you on this fever/low temp issue. I'm up at Mayo Rochester currently and they're keeping me pretty busy. The fever counting principle was pretty easy. Basically, she just told me that I would use the same scale as a person with a 98.6 degree normal temperature. For instance, if you are normally 98.6 and you go up .4 degrees, that would put you at 99 (a low-grade fever). If you start out at 96.8 degrees and you gain .4 degrees that puts you at 97.2 (if my math is right), but that would be the equivalent of a 99 degree fever for someone with a regular body temp. Does that make sense? If not, let me know and I'll try again.

On a totally different note, I met with my new PSC doc at Rochester Mayo. I was speaking to him about the fact that I'd been running fevers lately and that it was worrying me. He asked what my temperature was and I stated that when I'm not sick I run a 96.8. He interrupted me and told me that ALL people were 98.6 and that I could not possibly be a 96.8. I repeated again that I was a 96.8 and he again told me that was impossible and that everyone was a 98.6. I tried to (politely) argue with him but he shut me down. I finally just told him that I was running 2-3 degree fevers and left it at that. I'm not sure yet if I'm keeping this doctor or if I'm going to ask for another one (there were more issues than just the temperature thing), but I found it very frustrating that he wouldn't acknowledge and didn't seem to know that low body temps was a fairly common PSC thing! Has anyone else run into this kind of adamant denial about their symptoms or PSC

related oddities?Sandi in VA

-- Ian Cribb  P.Eng. (6...

[Guest guest]

The easiest thing is get him to take your temperature when you don't have a fever and let him explain why all his thermometers are reading low.

 

Ian 

Enid (and everyone else!), Hi! I'm sorry it's taken me so long to write back to you on this fever/low temp issue. I'm up at Mayo Rochester currently and they're keeping me pretty busy. The fever counting principle was pretty easy. Basically, she just told me that I would use the same scale as a person with a 98.6 degree normal temperature. For instance, if you are normally 98.6 and you go up .4 degrees, that would put you at 99 (a low-grade fever). If you start out at 96.8 degrees and you gain .4 degrees that puts you at 97.2 (if my math is right), but that would be the equivalent of a 99 degree fever for someone with a regular body temp. Does that make sense? If not, let me know and I'll try again.

On a totally different note, I met with my new PSC doc at Rochester Mayo. I was speaking to him about the fact that I'd been running fevers lately and that it was worrying me. He asked what my temperature was and I stated that when I'm not sick I run a 96.8. He interrupted me and told me that ALL people were 98.6 and that I could not possibly be a 96.8. I repeated again that I was a 96.8 and he again told me that was impossible and that everyone was a 98.6. I tried to (politely) argue with him but he shut me down. I finally just told him that I was running 2-3 degree fevers and left it at that. I'm not sure yet if I'm keeping this doctor or if I'm going to ask for another one (there were more issues than just the temperature thing), but I found it very frustrating that he wouldn't acknowledge and didn't seem to know that low body temps was a fairly common PSC thing! Has anyone else run into this kind of adamant denial about their symptoms or PSC

related oddities?Sandi in VA

-- Ian Cribb  P.Eng. (6...

[Guest guest]

Ian,

Hi! That would be a great idea...but he's in Rochester, MN and I'm in VA when

I'm not at the clinic...and currently I'm fever girl! LOL

Sandi in VA

[Guest guest]

Ian,

Hi! That would be a great idea...but he's in Rochester, MN and I'm in VA when

I'm not at the clinic...and currently I'm fever girl! LOL

Sandi in VA

[Guest guest]

Ian,

Hi! That would be a great idea...but he's in Rochester, MN and I'm in VA when

I'm not at the clinic...and currently I'm fever girl! LOL

Sandi in VA

[Guest guest]

Dear Sandi;

I am utterly astounded by this! The doctor needs to read this 2 articles:

G (2006) Body temperature variability (Part 1): a review of the history of

body temperature and its variability due to site selection, biological rhythms,

fitness, and aging. Altern. Med. Rev. 11: 278-293.

http://www.thorne.com/altmedrev/.fulltext/11/4/278.pdf

GS (2007) Body temperature variability (Part 2): masking influences of

body temperature variability and a review of body temperature variability in

disease. Altern. Med. Rev. 12: 49-62.

http://www.thorne.com/altmedrev/.fulltext/12/1/49.pdf

Best regards,

Dave

(father of (23); PSC 07/03; UC 08/03)

> On a totally different note, I met with my new PSC doc at Rochester Mayo. I

was speaking to him about the fact that I'd been running fevers lately and that

it was worrying me. He asked what my temperature was and I stated that when I'm

not sick I run a 96.8. He interrupted me and told me that ALL people were 98.6

and that I could not possibly be a 96.8. I repeated again that I was a 96.8 and

he again told me that was impossible and that everyone was a 98.6. I tried to

(politely) argue with him but he shut me down.

[Guest guest]

Dear Sandi;

I am utterly astounded by this! The doctor needs to read this 2 articles:

G (2006) Body temperature variability (Part 1): a review of the history of

body temperature and its variability due to site selection, biological rhythms,

fitness, and aging. Altern. Med. Rev. 11: 278-293.

http://www.thorne.com/altmedrev/.fulltext/11/4/278.pdf

GS (2007) Body temperature variability (Part 2): masking influences of

body temperature variability and a review of body temperature variability in

disease. Altern. Med. Rev. 12: 49-62.

http://www.thorne.com/altmedrev/.fulltext/12/1/49.pdf

Best regards,

Dave

(father of (23); PSC 07/03; UC 08/03)

> On a totally different note, I met with my new PSC doc at Rochester Mayo. I

was speaking to him about the fact that I'd been running fevers lately and that

it was worrying me. He asked what my temperature was and I stated that when I'm

not sick I run a 96.8. He interrupted me and told me that ALL people were 98.6

and that I could not possibly be a 96.8. I repeated again that I was a 96.8 and

he again told me that was impossible and that everyone was a 98.6. I tried to

(politely) argue with him but he shut me down.

[Guest guest]

Dear Sandi;

I am utterly astounded by this! The doctor needs to read this 2 articles:

G (2006) Body temperature variability (Part 1): a review of the history of

body temperature and its variability due to site selection, biological rhythms,

fitness, and aging. Altern. Med. Rev. 11: 278-293.

http://www.thorne.com/altmedrev/.fulltext/11/4/278.pdf

GS (2007) Body temperature variability (Part 2): masking influences of

body temperature variability and a review of body temperature variability in

disease. Altern. Med. Rev. 12: 49-62.

http://www.thorne.com/altmedrev/.fulltext/12/1/49.pdf

Best regards,

Dave

(father of (23); PSC 07/03; UC 08/03)

> On a totally different note, I met with my new PSC doc at Rochester Mayo. I

was speaking to him about the fact that I'd been running fevers lately and that

it was worrying me. He asked what my temperature was and I stated that when I'm

not sick I run a 96.8. He interrupted me and told me that ALL people were 98.6

and that I could not possibly be a 96.8. I repeated again that I was a 96.8 and

he again told me that was impossible and that everyone was a 98.6. I tried to

(politely) argue with him but he shut me down.

[Guest guest]

Well then you get to find you an article about the low body temperatures and you send him that.

 

Ian 

Ian,Hi! That would be a great idea...but he's in Rochester, MN and I'm in VA when I'm not at the clinic...and currently I'm fever girl! LOLSandi in VA

-- Ian Cribb  P.Eng. (6...

[Guest guest]

Well then you get to find you an article about the low body temperatures and you send him that.

 

Ian 

Ian,Hi! That would be a great idea...but he's in Rochester, MN and I'm in VA when I'm not at the clinic...and currently I'm fever girl! LOLSandi in VA

-- Ian Cribb  P.Eng. (6...

[Guest guest]

Sandi,

Interesting that you should ask. I met with the new Hepatologist Dr. B in SLC

on Monday. I was dx with UC in '00 by his office colleague and with PSC a few

months later. About 2 years ago my doctor believed that the restricted sodium

diet wasn't doing the trick and I have been on Spironolactone and Lasix for a

few years with some difficulty balancing my potassium. It seems I am now at a

dry weight and all is well. The doctor dx with pedal edema and ascities without

doing any needle biopsy of the fluid. So this Dr B enters the examine room and

starts firing questions at me: Why are you here? What makes you think you have

UC? You don't have UC, you never had UC. It never goes away and since you no

longer take meds for it and you don't have it you never had it. You don't need a

colonoscopy for five years. Why do you think you have ascities? You don't have

ascities. They would have had to take a needle an examine the fluid under a

microscope to determine if you had it. All your pain is

because you have Chronic Pain Syndrome. There is no correlation between high

cholesterol and cholestatic liver disease. The pain in your back and through

your upper abdomen is not sludge, when they did your last ERCP in August you had

no sludge, so you can't have sludge now. I felt like I was in an Inquisition. I

had to defend every diagnosis drs have given me for 9 years. He did agree that I

have PSC. He also was upset that I couldn't tolerate Urso. The extolled its

virtues like he's totally unaware of any of the newer studies (which I would

guess he wasn't). I never want to run into him again. He has referred me to the

transplant center for an evaluation. no one thinks I will be listed yet. But I

will be seen by a team there untill my transplant. I am full of doubts now. I

will discuss it all with my PCP. The Rheumy I've been seeing is pretty sure I

have Relapsing Polychondritis. The treatment for it is prednisone and DMARDs

(methotrexate or cytoxin etc). He is quite concerned

about the effect on my liver. The Hep says with a laugh, No, no there's no

problem. N ot my best dr visit. Hope we all get good treatment. I'm not going to

just let this ride. Cheryl ID PSC UC???

Body Temperature/Fevers

> Has anyone else run into this kind of adamant denial about their symptoms or

PSC

> related oddities?

>

> Sandi in VA

>

>

>

>

>

[Guest guest]

Sandi,

That must have been very frustrating, the way that doctor, acted. And yes, your calculation does make sense. My temperature, has been in the 96 or 97 [point something] degree, for the last couple of years, at least. I do the same convertion in order to find out how high it would be compared to the 98.6/99 [low-grade]. And actually it does worry me sometimes that i might be giving my doctor a lower than what the actual, should be. Take care.

Subject: Body Temperature/FeversTo: Date: Friday, March 6, 2009, 4:07 AM

Enid (and everyone else!), Hi! I'm sorry it's taken me so long to write back to you on this fever/low temp issue. I'm up at Mayo Rochester currently and they're keeping me pretty busy. The fever counting principle was pretty easy. Basically, she just told me that I would use the same scale as a person with a 98.6 degree normal temperature. For instance, if you are normally 98.6 and you go up .4 degrees, that would put you at 99 (a low-grade fever). If you start out at 96.8 degrees and you gain .4 degrees that puts you at 97.2 (if my math is right), but that would be the equivalent of a 99 degree fever for someone with a regular body temp. Does that make sense? If not, let me know and I'll try again.On a totally different note, I met with my new PSC doc at Rochester Mayo. I was speaking to him about the fact that I'd been running fevers lately and that it was worrying me. He asked what my temperature was and I stated that when I'm

not sick I run a 96.8. He interrupted me and told me that ALL people were 98.6 and that I could not possibly be a 96.8. I repeated again that I was a 96.8 and he again told me that was impossible and that everyone was a 98.6. I tried to (politely) argue with him but he shut me down. I finally just told him that I was running 2-3 degree fevers and left it at that. I'm not sure yet if I'm keeping this doctor or if I'm going to ask for another one (there were more issues than just the temperature thing), but I found it very frustrating that he wouldn't acknowledge and didn't seem to know that low body temps was a fairly common PSC thing! Has anyone else run into this kind of adamant denial about their symptoms or PSCrelated oddities?Sandi in VA

[Guest guest]

Sandi,

That must have been very frustrating, the way that doctor, acted. And yes, your calculation does make sense. My temperature, has been in the 96 or 97 [point something] degree, for the last couple of years, at least. I do the same convertion in order to find out how high it would be compared to the 98.6/99 [low-grade]. And actually it does worry me sometimes that i might be giving my doctor a lower than what the actual, should be. Take care.

Subject: Body Temperature/FeversTo: Date: Friday, March 6, 2009, 4:07 AM

Enid (and everyone else!), Hi! I'm sorry it's taken me so long to write back to you on this fever/low temp issue. I'm up at Mayo Rochester currently and they're keeping me pretty busy. The fever counting principle was pretty easy. Basically, she just told me that I would use the same scale as a person with a 98.6 degree normal temperature. For instance, if you are normally 98.6 and you go up .4 degrees, that would put you at 99 (a low-grade fever). If you start out at 96.8 degrees and you gain .4 degrees that puts you at 97.2 (if my math is right), but that would be the equivalent of a 99 degree fever for someone with a regular body temp. Does that make sense? If not, let me know and I'll try again.On a totally different note, I met with my new PSC doc at Rochester Mayo. I was speaking to him about the fact that I'd been running fevers lately and that it was worrying me. He asked what my temperature was and I stated that when I'm

not sick I run a 96.8. He interrupted me and told me that ALL people were 98.6 and that I could not possibly be a 96.8. I repeated again that I was a 96.8 and he again told me that was impossible and that everyone was a 98.6. I tried to (politely) argue with him but he shut me down. I finally just told him that I was running 2-3 degree fevers and left it at that. I'm not sure yet if I'm keeping this doctor or if I'm going to ask for another one (there were more issues than just the temperature thing), but I found it very frustrating that he wouldn't acknowledge and didn't seem to know that low body temps was a fairly common PSC thing! Has anyone else run into this kind of adamant denial about their symptoms or PSCrelated oddities?Sandi in VA

[Guest guest]

Just for the record I did not know had already come up with 2 articles about low body temperature when I wrote the message below!

Well then you get to find you an article about the low body temperatures and you send him that.

 

Ian 

Ian,Hi! That would be a great idea...but he's in Rochester, MN and I'm in VA when I'm not at the clinic...and currently I'm fever girl! LOLSandi in VA

-- Ian Cribb  P.Eng. (6... -- Ian Cribb  P.Eng.

[Guest guest]

What articles on low body temp?

From:

[mailto: ] On Behalf

Of Ian Cribb

Sent: Friday, March 06, 2009 12:53 PM

To:

Subject: Re: Body Temperature/Fevers

Just for the record I did not know had

already come up with 2 articles about low body temperature when I wrote the

message below!

[Guest guest]

Marie,

I have read that chronic fatigue isn’t an autoimmune disease, but

that autoimmune diseases usually have chronic fatigue as a symptom.

I had very little fatigue prior to my transplant, but I have it now. My

Hep says that 50% of his patients complain of fatigue post transplant. My Lab

numbers are great - all of them - but the fatigue persists. He said in time it

may go away, but after a year the odds go down.

The other option is that I have on top of everything else chronic

fatigue syndrome.

.....if and when I get a transplant, hopefully the fatigue will go

away.

[Guest guest]

Marie,

I have read that chronic fatigue isn’t an autoimmune disease, but

that autoimmune diseases usually have chronic fatigue as a symptom.

I had very little fatigue prior to my transplant, but I have it now. My

Hep says that 50% of his patients complain of fatigue post transplant. My Lab

numbers are great - all of them - but the fatigue persists. He said in time it

may go away, but after a year the odds go down.

The other option is that I have on top of everything else chronic

fatigue syndrome.

.....if and when I get a transplant, hopefully the fatigue will go

away.

[Guest guest]

Marie,

I have read that chronic fatigue isn’t an autoimmune disease, but

that autoimmune diseases usually have chronic fatigue as a symptom.

I had very little fatigue prior to my transplant, but I have it now. My

Hep says that 50% of his patients complain of fatigue post transplant. My Lab

numbers are great - all of them - but the fatigue persists. He said in time it

may go away, but after a year the odds go down.

The other option is that I have on top of everything else chronic

fatigue syndrome.

.....if and when I get a transplant, hopefully the fatigue will go

away.

[Guest guest]

For

some Drs., an informed patient is a DANGEROUS patient! You ARE the customer,

and with the knowledge you’ve gained here, you can easily push them in

the right direction. Hang in there, and stick to your guns!

Arne

From:

[mailto: ] On Behalf Of Sandi Pearlman

Hi, all!

Thanks everyone for the feedback. I'm so glad to know I'm not insane...and a

little saddened to realize that my Mayo Clinic PSC doc is! I am thinking about

asking for another doctor. It seems to me that this guy is just failing to

grasp the basics of PSC and he is completely unwilling to listen to anything he

doesn't already perceive to be the case…

[Guest guest]

For

some Drs., an informed patient is a DANGEROUS patient! You ARE the customer,

and with the knowledge you’ve gained here, you can easily push them in

the right direction. Hang in there, and stick to your guns!

Arne

From:

[mailto: ] On Behalf Of Sandi Pearlman

Hi, all!

Thanks everyone for the feedback. I'm so glad to know I'm not insane...and a

little saddened to realize that my Mayo Clinic PSC doc is! I am thinking about

asking for another doctor. It seems to me that this guy is just failing to

grasp the basics of PSC and he is completely unwilling to listen to anything he

doesn't already perceive to be the case…