Re: Temps with AF and CFS

[Guest guest]

I haven't been able to get my temps stable. I did get them stable for about

4 days in a row a couple of times but then I get sick (have CFS and Fibro) and

my temps become unstable.

I have managed to get them to stay in the upper 97 bracket so I started

increasing my cortef. I have less allergies, lots of new hair growth, my

sensativity to light is 80% improved, not nearly as ouchy/grouchy, not jumpy

over loud noises, I can function better mentally when paying bills, or trying to

answer a question but I still extremely tired, achy and keep coming down with

flu like symptoms.

I also damaged my pituitary gland years ago when I fell head first off a horse.

I found out about that 5 years ago when I was tested for growth hormone. My

IGF was coming back extremely low and the doctor I found specailized in HGH and

recognized the symptoms. She did a stim test and my Growth Hormone levels game

back at 30, the doctor I go to now doesn't want it below 150 but I had insurance

that wouldn't pay for it. Hopefully my new insurance will.

Sorry that was a long story just to say yes I have CFS and my temps are not

normally stable.

Temps with AF and CFS

I was diagnosed with Chronic Fatigue Syndrome about 5 years ago. But,

when I got my adrenals tested, I thought that the CFS diagnosis was

wrong and that I just had Adrenal Fatigue. Now I am thinking that I

have to face the fact that the two may not be mutually exclusive and

that I indeed have both. I am also wondering if the reason my temps

are so erratic is due to the CFS.

Does anyone else that also has CFS have trouble getting stable temps?

Or am I going down another dead end road?

Thanks,

English

[Guest guest]

Sorry? I am fascinated. Especially about your head injury. I hit my

head by jerking a garage door cord with my whole body weight and

falling back on the concrete pad. My head actually bounced off of the

floor. I have always wondered if that could have damaged my pituitary.

Also, how much HC are you on?

Thanks so much,

English

>

> Sorry that was a long story just to say yes I have CFS and my temps

are not normally stable.

> ----- Original Message -----

[Guest guest]

sarah

i am wondering how many years after your cfs started you took adrenal saliva

test and what was your stage?

Nil

Temps with AF and CFS

I was diagnosed with Chronic Fatigue Syndrome about 5 years ago. But,

when I got my adrenals tested, I thought that the CFS diagnosis was

wrong and that I just had Adrenal Fatigue. Now I am thinking that I

have to face the fact that the two may not be mutually exclusive and

that I indeed have both. I am also wondering if the reason my temps

are so

[Guest guest]

Are you saying that without taking any thyroid hormone your temps don't

stabilize? Or are you taking thyroid?

And is it you that has low ferritin? Or RT3? Pituitary? Also it occurs

to me that if you still have ovaries, this might be menopause?

I suppposedly have CFS and Fibromyalgia, and Chronic Myofascial Pain

Syndrome. But I did get to stable temps at 25 mg of HC but that was

while I was off all thyroid. To tolerate thyroid (T3) I have had to go

beyond 25 mg, and am now back at 30mg HC.

Everytime I increase T3 my temps do go unstable again for a few days,

but then they have settled down again.

That doesn't seem to be what you are talking about though.

At some point I may have to consider what else is going on with me, too,

though I'm progressing, it is slow, and I thought I'd feel better by

now. I mean I do feel better, but not nearly as good as I had hoped yet.

I am hoping that Dr. Lowe is right and Fibromyalgia, CFS etc, is just

unrecognized hypothyroid and adrenal probs.

I also don't want to have to go searching further.

sol

English stage 5 burden 12 wrote:

> I was diagnosed with Chronic Fatigue Syndrome about 5 years ago. But,

> when I got my adrenals tested, I thought that the CFS diagnosis was

> wrong and that I just had Adrenal Fatigue. Now I am thinking that I

> have to face the fact that the two may not be mutually exclusive and

> that I indeed have both. I am also wondering if the reason my temps

> are so erratic is due to the CFS.

>

>

[Guest guest]

WHile woring on thyroid and adrenals we OFTEN forget there are other

hormones that may need balancing when we get into this further. thsi si

sometimes why it sems liek while we are progressing ther is still

somehting we are missing. I am learning all over again the importance of

the sex hormones. Since restarting estrogen my glucose is MUCH better

and my energy is also returning as well as some weight loss with no

change in diet!

--

Artistic Grooming- Hurricane WV

http://www.stopthethyroidmadness.com/

http://health.groups.yahoo.com/group/NaturalThyroidHormonesADRENALS/

[Guest guest]

I am also a bit upset about this subject. As I started increasing isocort I

noticed that I get well but as I get well my hyperactivity also increases and I

again exhaust myself. I am tired of this vicious circle. First week I started

increasing the dosage I felt tired and rested a lot(probably because of acth

suppression Val said)but later I started having more energy and started running

around again. My blood pressure drop was improving but today it is again 12

points after exhausting myself days ago.Actually i am exhausting myself at this

point,too. I am extremely tired,have adrenal pain but my brain is extremely

alive and does not allow me to rest.This is a big problem for me and I started

to think I won't be able to recover even if I am at highest dosage.I am

wondering if that could be the differance of CFS from adrenal fatigue.

I am thinking I definitely need something to calm down my excessive pituitary

activity.

bw

Nil/CFS and or AE

Temps with AF and CFS

I was diagnosed with Chronic Fatigue Syndrome about 5 years ago. But,

when I got my adrenals tested, I thought that the CFS diagnosis was

wrong and that I just had Adrenal Fatigue. Now I am thinking that I

have to face the fact that the two may not be mutually exclusive and

that I indeed

[Guest guest]

I listed some key words below that you can use in doing a google search. I

originally went to a woman doctor who specialized in hormones. I didn't know

anything about growth hormones or pituitary glands at the time. I was going

in for thyroid. Little did I know thyroid was just a part of it. I already

knew I had CFS, Fibro and Celiac.

But then I found out I had PCOS, Insulin resistance, Diabetes, and then the

growth hormone issue. I fell off a horse when I was 21 and landed on my head.

It was a fairly small horse and my sister slapped in on the butt and it took

off with me on it. I knew I was going to fall so I tried to jump off but my

right foot got stuck in the stirrup. Anyways I landed on my head but at least

my foot came loose. I didn't think much of it, I felt fine but a few months

later I started getting tired and I wanted to sleep a lot and then I started

gaining weight. I still didn't think too much of it as I had a baby that was

about 4 months old and he cried almost non stop, so when he slept I tried to

sleep. He apparently was allergic to milk but I didn't know it at the time,

now we are pretty certain he has Celaic too.

Anyways I started having muscles problems but I found a good chiropractor and I

did pretty well for quite a long time. But my muscles kept getting weaker,

then in my late 30s I started gaining a lot of weight, back problems, muscles

pain, that was when I was diagnoised with CFS and Fibro. I tend to think both

of them are from other health issues.

Later I started getting really bad problems with diarrhea, pain and cramping in

my midsection just above the navel (Classic Celiac) but my muslces kept getting

weaker and weaker. I seemed to be getting better when I went gluten free,

except I couldn't loose weight and I got sick easy.

Then I developed Diabetes, lost a lot more hair on my head and just was

overwhelmingly tired. I knew I had thyroid problems for years, but I finally

had gotten so sick I knew I had to find a doc who could help me. Someone

recommended Dr Springer to me and so I said okay I will try one more doctor ( I

had seen more than a few who turned out to be idiots) and she recognized that I

had a growth hormone problem. Her speciality that she was researching and

lecturing on was head injuries and growth hormone.

I did feel much better on the growth hormone for awhile but then I started

having more and more problems. I had switched to another doc, (dr springer got

screwed big time and lost her med license) and he kept doing adrenal test. My

morning cortisol kept coming back high and I remembered from a few years ago

when I was on the natural thyroid group that high AM corisol meant my adrenals

were under stress. So I decided to rejoin the thyroid group to find

information and that is when I stumbled onto to this group.

I had salvia test done and found I was very low in cortisol and probably well

into stage 6 failure. I think I have been on Cortex for about 5 or 6 months

now. I am up to 40 now and not sure if I should go higher or just ride it out.

I read some interesting tid bits on different web pages by researching some of

the words I listed below. There were at least a couple different sites that

mentioned that if you are very overweight you might need to take more HC than a

smaller person would.

Then there is some that think that with a damaged Pituitary gland you might need

to take more HC and that could be a

lifetime thing. I really haven't figured it all out yet. Still trying.

I know I would be a lot better off on GH but I am in the process right now of

waiting to see if my insurance will pay. The nurse at my hormone docs office

said a lot of insurance companies are not making the doctor who prescribes some

medicines talk to a peer group and convince them the patient needs the medicine.

I haven't heard back from her this week so tomorrow I am going to call and see

what the insurance has told her. I know the doc has to send in my medical test

proving I need it but..............she said a lot of insurance companies are

doing this peer thing now to try to force the patient to give up and pay for the

meds themselves or to just go away and give up period. I guess I will soon

find out. The GH I was on previously was over $5oo a vial per month and at one

time I was using 2 vials a month. I can't work so I can't really afford to pay

for it. Poor DH has dreams of retiring early but not sure he is going to be

able to pull that off for awhile yet.

I forgot to mention that I read in several articles that even rear end collision

can cause damage to your pituitary gland. What the heck is that called? that

is another problem for me, my brain goes on vacation and leaves me hanging in

the middle of a thought. LOL

But you have to remember I have PCOS, Fibro, CFS, Celiac, Diabetes, Thyroid,

Adrenal and the growth hormone problems so I don't know where one begins and the

other ends. I also sometimes really suspect I might have Lyme Disease, I found

a little tic attached to my stomach one morning when I got up to pee and shortly

after that I is when I developed a really nasty case of flu like symptoms that

no one else in the house had, I lost hair by the hand full in my bathroom sink

if I just touched my head and the fibro and CFS appeared about that time too.

So I really don't know what is causing what or how I will ever sort it all out

or make it better.

But a head injury like the one you are mentioning could be a problem for you.

K

Oh and below are some key words you could google:

hypopituitarism

hypopituitarism treatment

hypopituitarism + head injury + adult

Traumatic brain injury - severe head trauma - GH deficiency - pituitary hormone

deficiency

Re: Temps with AF and CFS

Sorry? I am fascinated. Especially about your head injury. I hit my

head by jerking a garage door cord with my whole body weight and

falling back on the concrete pad. My head actually bounced off of the

floor. I have always wondered if that could have damaged my pituitary.

Also, how much HC are you on?

Thanks so much,

English

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[Guest guest]

>>I am thinking I definitely need something to calm down my excessive pituitary

activity.

bw <<

Whta you are describing is not excessive pit activity but excess adrenaline.

Adrenaline becomes addictive to th body and mind, and ewhen you start feeling a

little energy you push yourself too had to get that adrenaline rush which them

exhausts you. It is a matter of gettign enough cortiols in your body and

reserves built so that the adrenlaine cannto be forced out inapropriately. It

does take time and for some seems like quite high cortiosll levels to get there.

AND self control. Stop the self destructive behaviour. I used ot be a total Type

A personality.. HAd to do everything for everyone. Now I still do it but I do it

online where it doesn;t exhaust me! LOL And I mAKE myself get up from this

computer ona regualr basis to relax.

--

Artistic Grooming- Hurricane WV

http://www.stopthethyroidmadness.com/

http://health.groups.yahoo.com/group/NaturalThyroidHormonesADRENALS/

[Guest guest]

Thank you so much for that info. The last time I was at the hormone doc he

wanted me to go back on my estrogen and progesterone. I keep forgetting to

call the compounding lab and get them going.

It is interesting that a few of the guys my husband works with told him a few

years ago that he needed to tell me to have my sex hormones checked because

their wives were having a lot of muscle pain and tired too. I did feel better

there for awhile but then all of a sudden it seems like it is more down hill

than up.

So hard to get it all lined up sometimes. I have gained 30 lbs in the past 5

months and it makes no real sense. I gained 12 and realized my son was eating

gluten in the house so I talked to him about not doing that but the other 18 lbs

I have no clue what caused them. It is so maddening. I can be really good on

my carb diet and lose a few pounds and then still on the same diet gain more

pounds than I just lost. I know part of that must be related to my insuling

restistance.

I am glad you are improving.

Re: Temps with AF and CFS

WHile woring on thyroid and adrenals we OFTEN forget there are other

hormones that may need balancing when we get into this further. thsi si

sometimes why it sems liek while we are progressing ther is still

somehting we are missing. I am learning all over again the importance of

the sex hormones. Since restarting estrogen my glucose is MUCH better

and my energy is also returning as well as some weight loss with no

change in diet!

--

Artistic Grooming- Hurricane WV

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[Guest guest]

Yay for you, Val in terms of the glucose and weight loss!

I have read alot that concurs with your statement that one cannot just

treat thyroid and adrenals and expect to be optimized on those alone.

Are you taking estrogen now? If so, what kind?

>

> WHile woring on thyroid and adrenals we OFTEN forget there are other

> hormones that may need balancing when we get into this further. thsi si

> sometimes why it sems liek while we are progressing ther is still

> somehting we are missing. I am learning all over again the

importance of

> the sex hormones. Since restarting estrogen my glucose is MUCH better

> and my energy is also returning as well as some weight loss with no

> change in diet!

>

> --

> Artistic Grooming- Hurricane WV

>

> http://www.stopthethyroidmadness.com/

> http://health.groups.yahoo.com/group/NaturalThyroidHormonesADRENALS/

>

[Guest guest]

Have you ever been tested for gluten sensitivity? There's a high

correlation with CFS/Fibro/adrenal fatigue and gluten sensitivity so

it might be worth checking into. The blood tests you'd want are:

gliadin IgA antibody, gliadin IgG antibody, and antitissue

transglutaminase IgA. The most sensitive tests are done through stool

testing but are not yet FDA apprpoved so you have to pay out of pocket-

-the lab I used is at www.enterolab.com

Liz

>

> I was diagnosed with Chronic Fatigue Syndrome about 5 years ago. But,

> when I got my adrenals tested, I thought that the CFS diagnosis was

> wrong and that I just had Adrenal Fatigue. Now I am thinking that I

> have to face the fact that the two may not be mutually exclusive and

> that I indeed have both. I am also wondering if the reason my temps

> are so erratic is due to the CFS.

>

> Does anyone else that also has CFS have trouble getting stable temps?

> Or am I going down another dead end road?

>

> Thanks,

> English

>

[Guest guest]

,

I have post polio syndrome. It is a motor neuron disease. My temps are not

stable but I don't know if PPS has anything to do with it. It may just be that

it will take me longer to stabilize dureto being on T4 only replacement for 42

long years.

In the mid 80s was when CFS, Fibromyalgia, and ME began to surface. I still

think it may be due to undiagnosed cases of polio and when you and others (some,

not all) were young, and what you now have *may* be Post-Polio Syndrome.

A good book to get from your library is The Polio Paradox, by L. Bruno.

It has information on CFIDS, Fibromyalgia, and ME and how to live with it.

>>>Does anyone else that also has CFS have trouble getting stable temps?

[Guest guest]

>>I have read alot that concurs with your statement that one cannot just

treat thyroid and adrenals and expect to be optimized on those alone.

Are you taking estrogen now? If so, what kind?<<

Well everyone will be in shock but Premarin. I have over the years since my Hyst

tried every kind of estrogen there is and the ONLY one that worked for me, and I

tried Bioidentical Estradiol a couple months ago and NOHTING. Thsi si working so

I am sticking with what works.

--

Artistic Grooming- Hurricane WV

http://www.stopthethyroidmadness.com/

http://health.groups.yahoo.com/group/NaturalThyroidHormonesADRENALS/

[Guest guest]

Actually, I am not in shock! While I believe TRYING to do

bio-identical seemingly is a good thing, I do know many women who have

gone BHRT first and have not been happy.

Just like HC being bio-identical yet others do better with Medrol --

this is not much different.

I am glad you are doing something that is giving you positive results!

>

> >>I have read alot that concurs with your statement that one cannot just

> treat thyroid and adrenals and expect to be optimized on those alone.

>

> Are you taking estrogen now? If so, what kind?<<

>

> Well everyone will be in shock but Premarin. I have over the years

since my Hyst tried every kind of estrogen there is and the ONLY one

that worked for me, and I tried Bioidentical Estradiol a couple months

ago and NOHTING. Thsi si working so I am sticking with what works.

>

> --

> Artistic Grooming- Hurricane WV

>

> http://www.stopthethyroidmadness.com/

> http://health.groups.yahoo.com/group/NaturalThyroidHormonesADRENALS/

>

[Guest guest]

I never thought about it like that, but it makes SOOO much sense. That is

why if I can ever get myself going I can keep going for awhile, but when I

stop I can't move anymore and " pay the price " for whatever I needed to do at

that time.

Cherie

Experience: that most brutal of teachers. But you learn, my God do you

learn.--C.S.

> Whta you are describing is not excessive pit activity but excess

> adrenaline. Adrenaline becomes addictive to th body and mind, and

> ewhen you start feeling a little energy you push yourself too had

> to get that adrenaline rush which them exhausts you. It is a

> matter of gettign enough cortiols in your body and reserves built

> so that the adrenlaine cannto be forced out inapropriately. It

> does take time and for some seems like quite high cortiosll

> levels to get there. AND self control. Stop the self destructive

> behaviour. I used ot be a total Type A personality.. HAd to do

> everything for everyone. Now I still do it but I do it online

> where it doesn;t exhaust me! LOL And I mAKE myself get up from

> this computer ona regualr basis to relax.

>

>

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2:04 PM

[Guest guest]

Nil,

I had my saliva test in May and I am stage 5. I was diagnosed with the

CFS about 5 yrs ago, but I have had it for about 20 yrs.

Do I remember correctly that you also have/had candida?

English

>

> sarah

>

> i am wondering how many years after your cfs started you took

adrenal saliva test and what was your stage?

>

[Guest guest]

Sol,

I am taking (and have for years) a low dose of thyroid, a combo of

levoxyl and cytomel once in the AM. Perhaps I should stop them and see

if my temps stabilize.

I dont know about Ferritin,RT3,or Pituitary yet. I hope to have those

tested soon. My ovaries seem to be functioning well. sooo...

I did notice that on Friday and yesterday I missed my 4pm dose of HC

and both days I had a higher temp in the afternoon (around 99.) So I

wonder what that is about. I thought that I had read that CFS can

cause low grade fevers.

English

>

> Are you saying that without taking any thyroid hormone your temps don't

> stabilize? Or are you taking thyroid?

> And is it you that has low ferritin? Or RT3? Pituitary? Also it occurs

> to me that if you still have ovaries, this might be menopause?

>

> I suppposedly have CFS and Fibromyalgia, and Chronic Myofascial Pain

> Syndrome. But I did get to stable temps at 25 mg of HC but that was

> while I was off all thyroid. To tolerate thyroid (T3) I have had to go

> beyond 25 mg, and am now back at 30mg HC.

>

> Everytime I increase T3 my temps do go unstable again for a few days,

> but then they have settled down again.

> That doesn't seem to be what you are talking about though.

>

[Guest guest]

Nil,

Oh how I resemble this remark!! I think part of it is that we are so

excited to feel any kind of energy again that subconsciously we feel

like we have to make up for lost time or something. For me it was

joyous to feel like a normal person and I just couldn't control

myself. Obviously pacing is an issue for us.

English

>

> I am also a bit upset about this subject. As I started increasing

isocort I noticed that I get well but as I get well my hyperactivity

also increases and I again exhaust myself. I am tired of this vicious

circle. First week I started increasing the dosage I felt tired and

rested a lot(probably because of acth suppression Val said)but later I

started having more energy and started running around again.\

[Guest guest]

>

> ,

Thanks ,

I'll do a google search and see what I come up with.

English

>

> I have post polio syndrome. It is a motor neuron disease. My temps

are not stable but I don't know if PPS has anything to do with it. It

may just be that it will take me longer to stabilize dureto being on

T4 only replacement for 42 long years.

> In the mid 80s was when CFS, Fibromyalgia, and ME began to surface.

I still think it may be due to undiagnosed cases of polio and when you

and others (some, not all) were young, and what you now have *may* be

Post-Polio Syndrome.

> A good book to get from your library is The Polio Paradox, by

L. Bruno. It has information on CFIDS, Fibromyalgia, and ME

and how to live with it.

>

>

>

> >>>Does anyone else that also has CFS have trouble getting stable temps?

>

>