Endocrinologist...suggestions?

[Guest guest]

During the whirlwind of diverse,medical crises and apointments the last few

weeks, I was referred to an Endocrinologist who I will see Friday. My short list

to address so far:

More precise balancing of reproductive hormones ( I am ending menopause and am

on prescription, compunded natural estrogen and progesterone)

Assessment of cortisol, adrenals with my long term Florinef use

Severe reactions to heat (and dare I say, chemicals, and bionic sense of smell).

I have no idea who this person is, or their awareness of ME/CFS/MCS

Any suggested approaches? Things to spark his interest? What not to bring up

I have never seen an endocrinologist, (am I even spelling it right?), and do am

not clear what all they do, other than thyroid-related.

I need a crash course and how/what to bring up.

I cannot recall top research issues re: us or what they are equipped to address.

Have other ME/PWCS seen one and what happened...good/bad?

Thanks,

Katrina

On a MediCal type HMO..limits, but surprising with the right focus.

[Guest guest]

> During the whirlwind of diverse,medical crises and apointments the

last few weeks, I was referred to an Endocrinologist who I will see

Friday. My short list to address so far:

>

> More precise balancing of reproductive hormones ( I am ending

menopause and am on prescription, compunded natural estrogen and

progesterone)

>

> Assessment of cortisol, adrenals with my long term Florinef use

>

> Severe reactions to heat (and dare I say, chemicals, and bionic

sense of smell).

>

>

> I have no idea who this person is, or their awareness of ME/CFS/MCS

>

> Any suggested approaches? Things to spark his interest? What not

to bring up

>

> I have never seen an endocrinologist, (am I even spelling it

right?), and do am not clear what all they do, other than thyroid-

related.

>

> I need a crash course and how/what to bring up.

> I cannot recall top research issues re: us or what they are

equipped to address.

>

>

> Have other ME/PWCS seen one and what happened...good/bad?

>

> Thanks,

>

> Katrina

>

Hi Katrina

You might find the info helpful on thyroid/adrenals in my website,

www.bertiedog.com.

Here in the UK some of us have given up on calling them

Endocrinologists we refer to them as " Endoprats " . I will say no

more than that cos I don't know the position in the US or elsewhere!

Pam

[Guest guest]

Hi,

I had gone to a couple of endocrinologists and not happy with the

visit because they refuse to do Growth Hormone stimulation tests

saying I dont have any symptoms showing I have problems with my

pituitary.

To test for adrenals, I find teh Adrenal Stress Index which is a

saliva test more helpful. I dont think endocrinologist would accept

this test- thats what my 2 doctors did- said that this test was

useless. One of them did not like the ACTH stimulation test too.

I hope you have better luck with your endocrinologists appt. Sorry I

could not be of much help,

Gayathri.

> During the whirlwind of diverse,medical crises and apointments the

last few weeks, I was referred to an Endocrinologist who I will see

Friday. My short list to address so far:

>

> More precise balancing of reproductive hormones ( I am ending

menopause and am on prescription, compunded natural estrogen and

progesterone)

>

> Assessment of cortisol, adrenals with my long term Florinef use

>

> Severe reactions to heat (and dare I say, chemicals, and bionic

sense of smell).

>

>

> I have no idea who this person is, or their awareness of ME/CFS/MCS

>

> Any suggested approaches? Things to spark his interest? What not to

bring up

>

> I have never seen an endocrinologist, (am I even spelling it

right?), and do am not clear what all they do, other than thyroid-

related.

>

> I need a crash course and how/what to bring up.

> I cannot recall top research issues re: us or what they are

equipped to address.

>

>

> Have other ME/PWCS seen one and what happened...good/bad?

>

> Thanks,

>

> Katrina

>

> On a MediCal type HMO..limits, but surprising with the right focus.

[Guest guest]

Hi Katrina,

I saw an Endocrinologist but it was in an UK NHS

hospital so your experiences will probably be better

than mine.

He tested TSH/T4 for the thyroid and also did a

Synacthen test for Graves/ disease.

However he did not test for Thyroid T3 and I had this

done privately. The NHS Endo I saw was openly

scathing about T3 problems and he was totally

disinterested in any problems people with CFS and ME

can suffer from.

I had to pay privately for a 24 hour cortisol test

which showed low cortisol particularly in the morning.

I don't know if you have a low body temperature but

this was one of the few symptoms I have that the Endo

was interested in.

Good luck!

With warmest regards,

Annette

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[Guest guest]

> During the whirlwind of diverse,medical crises and apointments the

last few weeks, I was referred to an Endocrinologist who I will see

Friday. My short list to address so far:

>

> More precise balancing of reproductive hormones ( I am ending

menopause and am on prescription, compunded natural estrogen and

progesterone)

>

> Assessment of cortisol, adrenals with my long term Florinef use

>

> Severe reactions to heat (and dare I say, chemicals, and bionic

sense of smell).

>

>

> I have no idea who this person is, or their awareness of ME/CFS/MCS

Katrina:

I'm behind the curve on lots of the most advanced stuff on ME/CFS

that COULD fall properly within the expertise of an endocrinologist

but my experience with docs in that specialty is limited to two.

Actually the first one who I saw at the very beginning of my illness,

before " CFS " was " invented " did to my surprise a hair analysis for

magnesium problems because while seeing him a year and a half after

my illness onset I noticed that as I improved and functioned more

that I was getting new symptoms which for some reason he recognized

as magnesium deficiency symptoms. And he was very right. But he

didn't go lots further.

My current endo I went to because my general internist discovered

that I had a multinodular goiter on examination and though she said

they were not uncommon in the general populace when on examination

there was some uneven quality to it I was sent for a radioactive

uptake scan and also went to another endo (my old one had moved to

Hawaii!).

The new one found a cyst on the multinodular goiter. At first he

aspirated it several times but when it kept coming back he suggested

that I take thyroid med to " rest " the gland, which sometimes keeps

the cyst from refilling. He was amenable to Armour though he had

expected to use Synthroid but I kinda follow Shommon (sp? and

the possible failure to convert t4 to t3 or the other way around).

But whenever I bring something else to him either from the list or co-

cure he thinks it not worthy of looking into. I asked him to forget

about the diagnosis ME/CFS and look at my main symptoms as an

endocrinologist might, but he didn't suggest anything and pooh-poohed

the cortrysin test. And you can't speak to him about adrenal burnout.

In sum I'm getting a bit put out by him but before I go to another I

want to bone up again and as well look for an endo who doesn't think

ME/CFS is somaticization and also is willing to use his/her knowledge

to investigate out of the conventional box. That is our difficulty

so often.

The endo who's now in Hawaii, if I knew then what I know now, I know

that he'd pursue these things even though he didn't read the ME lit.

I don't know if he's typical or atypical but I suspect the latter.

So I do think your question to the list about matters endocrine in ME

are worthwhile and if there's a data base of ME lit by topics like

hormones that would be good. I wish I could refer you but I can't--

that's a project I hope to pursue among others after I finally finish

up with the housing welfare thing, which is reaching a foreseeable

conclusion in terms of what I have to do.

I'd surely have him/her check your DHEA-S. And have you given

thought to stopping estrogen and progesterone given the studies and

doing osteoporosis prevention via specific drugs, supplements, and

walking as much as you can. And also cardiac stuff, of which EFA's I

take Nordic Naturals Artic Omega , which I believe Cheney recommends,

and other things.

It's so rotten but so certain that unless we have something specific

like a cyst on the tyroid nodule with any specialty we have to assume

that while they might " believe in " ME/CFS that means nada re knowing

about how its complex pathophysiological patterns intersect with the

issues in their specialty that they want to or need to pursue with

you.

Of all the regular mainstream specialists I've been to it's

rheumatologists and I've only come upon worthless ones or worse

despite their rep. Also physical rehab specialists, though now I

have someone who's supurb. So I won't go to a rheumatologist unless

I get a written guarantee that he/she knows as much or more than I do

about this illness, meaning I won't go to any.

But if you can find an open minded endo and bring stuff to them I

think that can be a worthwhile specialty.

Good luck and I apologise that I can't give you references. Also

check Ken's website and possible do a co-cure archives search and

also Axford's site and I think Marc Fluks puts out stuff on co-

cure that can be searched.

Judith

> Any suggested approaches? Things to spark his interest? What not to

bring up

>

> I have never seen an endocrinologist, (am I even spelling it

right?), and do am not clear what all they do, other than thyroid-

related.

>

> I need a crash course and how/what to bring up.

> I cannot recall top research issues re: us or what they are

equipped to address.

>

>

> Have other ME/PWCS seen one and what happened...good/bad?

>

> Thanks,

>

> Katrina

>

> On a MediCal type HMO..limits, but surprising with the right focus.