Re: Endo visit for adrenals etc. -w hat will I say?

[Guest guest]

Lynn,

The docs may want you to reduce meds, come off them etc so they can get their

rests, but they didn't get the tests when you felt bad so basically it's tough

and they will just have to use their brains to figure it out, based on signs and

symptoms.

Stick to your guns, why would you want to make yourself ill for some test that

proves you're ill?

If they demand that you wean off, you can just say no! and your list of tests

you would like, does not seem unreasonable, I'd present him with the list and

your reasons for wanting them. Well done so far!

xx

>

I told her that bloods are inaccurate once on HC, but she wanted to get them

done anyway. The result came back high. I then showed her my previous cortisol

labs on the SAME DOSE and they vacillated from super low to super high too. So,

it is obvious that bloods can't be tested on HC.

> I wish I had been tested for LOCAH and hypopit before I was put on HC, but I

was not. So, it seems too late now.

>

>

> In a perfect world I would like him to:

> Run an adrenal scan

> Order a thyroid ultrasound

> Try to figure out via SYMPTOMS if I have LOCAH or Hypopit - Or can he test any

of my hormones for hypopit?

> Test aldostrone and rennin

> Test me for Graves antibodies because I had an eye issue before and

ophthalmologist told me that one can have Graves and Hashi antibodies at the

same time.

>

[Guest guest]

Lynn

could you ask to change over to Dexamethasone for two weeks and then have

dynamic testing done. Dexamethasone is a steroid like HC but it doesn't affect

the cortisol testing. It would allow you to do a synacthen test wthout going

through all the steroid withdrawal symptoms but i'm not sure if you can do the

Insulin tolerance test or 17-OHP Locah test on the Dex.

You can get the graves antibodies done cheaply in Brussels if you are stll going

there.

I think you will just have to explain that you have terrible withdrawal symptoms

and wouldn't feel safe to come off HC without an alternative like Dex. If you

stress the safety issue,the dr might be more aware of liability issues were

something to go wrong if you tried to come off HC at his request.

[Guest guest]

Hi Lynn, My most sucessful visits to a doc were always when I have prepared well. listing tests, symptoms, anything relevant, chronology of the problem, all on one side of A4 ending with questions. That way it all gets covered and is kept on my notes. Other docs involved in my treatment have thanked me for this clear approach- my hospital file is thicker than a brick so it's nice for them to have it all on one sheet on the top. This way you can explain what happens when you wean your dose for instance- and your symptoms before starting HC. There's lots of good stuff in the files to help you compile this and also you may find http://www.drrind.com/scorecardmatrix.asp useful as it compares hypo and adrenal symptoms- Dr. P thought this was very good. > thyroid treatment > From: lynndunning@...> Date: Wed, 18 Aug 2010 23:53:03 +0000> Subject: Endo visit for adrenals etc. -w hat will I say?> > Hello all> > In May of this year, I stumbled upon an amazing GP. She is eager to learn all about NTH, prescribed me NTH no questions asked and in general is extremely supportive, open minded, eager to learn and HUMAN. She is happy for me to be on NTH and prescribes that. She also prescribes HC to me. However, she wanted some cortisol bloods done when I first saw her. I told her that bloods are inaccurate once on HC, but she wanted to get them done anyway. The result came back high. I then showed her my previous cortisol labs on the SAME DOSE and they vacillated from super low to super high too. So, it is obvious that bloods can't be tested on HC.> > Still, she feels that my adrenals need to be thoroughly tested as I have only ever gotten the saliva test pre HC. She asked why not wean off the HC and get a STIM done and I explained to her that everytime I try to wean I get palpitations, extreme anxiety, shakiness, dizziness and low BP. Her answer to that was : "Fair enough, I can see why you don't want to wean". But she hopes this guy will give me an adrenal scan.> > So, I was thinking when I see this endo what will I say/do? I REFUSE to come off HC, as when I have tried before I get the above symptoms AND cannot tolerate even 1/4 grain thyroid.> > I wish I had been tested for LOCAH and hypopit before I was put on HC, but I was not. So, it seems too late now.> > I am not looking forward to this, as I ma only going to keep her happy. This visit is free, so I suppose that is good; but he will demand I wean I know and what do I say then?> > In a perfect world I would like him to:> Run an adrenal scan> Order a thyroid ultrasound> Try to figure out via SYMPTOMS if I have LOCAH or Hypopit - Or can he test any of my hormones for hypopit?> Test aldostrone and rennin> Test me for Graves antibodies because I had an eye issue before and ophthalmologist told me that one can have Graves and Hashi antibodies at the same time.> > What can I say/do to make him listen? Could there be anything that would help?> > I am dreading this appointment. I would dearly live to get help and the tests I want, but can't see it happening.> > Thanks!> > > > > ------------------------------------> > TPA is not medically qualified. Consult with a qualified medical practitioner before changing medication.> >

[Guest guest]

I went to endo and just letting yis know how it went now.

It was mixed and I did want to bang my head against a wall for some of the time;

but he may well turn out to be useful for me.I WISH, WISH, WISH my thyroid

bloods hadn't been so bad when my GP referred me to endo as because of this, she

asked him to look at my thyroid too. She did say he was very friendly and human

yes (which he was), BUT he was also a typical endo.

Quite interesting to see the species up close...

He said that I was on too much thyroid because of my suppressed TSH. My most

recent bloods in June were FT4 11(12-22) and he told me that I was " still on too

much " as my TSH was " suppressed " . When I disagreed, he proceeded to explain to

me what TSH is and how it works. He alos told that there was a " risk of atrial

fibrilation and bone loss. A small one, but still there " *rolleyes*

He also came out with this brilliant statement: " Some people just need less T4

and even though yours is low and below range; the fact that your TSH is so

suppressed shows you are on too much thyroid " . Illogical much?

Well, when my FT4 was 11, I was: extremely depressed, swollen, sluggish,

freezing cold, lethargic as a slug and heck - gained 5 lbs in my 1.5 week long

holiday.

He then mentioned that neither the ACEE, the BTA nor the BTF recommend a

suppressed TSH. I let loose on the BTA, as what they do to patients is

disgusting; telling docs not to ever rx T3 ever etc. I told him we would agree

to disagree.

Well if only doc had never mentioned my thyroid; all would have been okay.

This is the annoying bit, as he says my symptoms clearly indicate adrenal

issues, and he says it was reasonable to start me on HC in the first place, but

that he wants to learn more about adrenal saliva issues; as these were utilised

for my initial diagnosis. Naturally, (of course) he thinks 30 is a very high

dose and not one I should be on. This is despite most adrenal patients being on

doses between 25-35. I also have NO hyperadrenal symptoms. I would LOVE to take

a lower dose, but when I wean I get so ill.

Bad news: He wants to interfere with my thyroid. I also forgot to ask him to

test for hypopit and Graves; as well as a thyroid ultrasound.

Good news: He is testing aldostrone and rennin and will give me an " official "

diagnois. He is also testing adrenal antibodies, which I have been wanting

forever!!!

Next time I see him; I am bringing in the Warrington TSH paper along with other

references. I have seen papers on low TSH's but none on suppressed TSH being

okay. Anyone got any?

I started out with his student doc and I could tell she was just sitting there

feeling awkward when we were 'debating'.

He also did a physical examination of me. He got me to stand up and hold out my

hands and he examined them. He then got me to try and push his arms down also as

he was pushing against me. He looked at my eyes and asked me had I stretch

marks. Stretch marks are really Cushings, but since that was only in puberty

that was okay.

He then asked me had I had weight issues during my life. And now I am wondering

was he assessing whether I was underweight most of my life (this is classic

's). Or was he thinking that I looked so fat? His nurse had weighed and

took my BP before he and student doc saw me. So, maybe he was thinking of the 4

kilos overweight I am by BMI.

Overall, a mixed bag. The whole adrenal thing is EXCELLENT, but the thyroid

thing is soooooooooooo annoying.

I am basically gritting my teeth to get through seeing him, so I can get an

official adrenal diagnosis.

What do you think I should do when I next see him? Show him some papers on

suppressed TSH or tell him I am happy for my GP to handle my thyroid care? Smile

and nod when he talks about thyroid?

The ONLY reason I am going back to him is to get adrenal insufficiency written

on my medical file in my country, so that I will be assured treatment for the

rest of my life.

What do you all think?

Lynn

[Guest guest]

Lyn,

Show him the press release from the Society for Endocrinology which says that a

suppressed TSH is basically OK. It was only released a few months ago, so

unless he is very up to date on his reading (roll your eyes at this point and

smile) his informstion on TSH will not be up to date. It's in the files

inder Thyroid references. Here's a link:

thyroid treatment/files/THYROID%20REFE\

RENCES/

It does say that tsh of less than 0.03 is a problem, but I'm assuming he's

trying to make you much higher than this? If you are less than 0.03 then you

could blame inaccurate measuring? It is very difficult to obtain an accurate

reading at this low level.

xx

>

> He said that I was on too much thyroid because of my suppressed TSH. My most

recent bloods in June were FT4 11(12-22) and he told me that I was " still on too

much " as my TSH was " suppressed " . When I disagreed, he proceeded to explain to

me what TSH is and how it works. He alos told that there was a " risk of atrial

fibrilation and bone loss. A small one, but still there " *rolleyes*

>

[Guest guest]

Lyn,

Show him the press release from the Society for Endocrinology which says that a

suppressed TSH is basically OK. It was only released a few months ago, so

unless he is very up to date on his reading (roll your eyes at this point and

smile) his informstion on TSH will not be up to date. It's in the files

inder Thyroid references. Here's a link:

thyroid treatment/files/THYROID%20REFE\

RENCES/

It does say that tsh of less than 0.03 is a problem, but I'm assuming he's

trying to make you much higher than this? If you are less than 0.03 then you

could blame inaccurate measuring? It is very difficult to obtain an accurate

reading at this low level.

xx

>

> He said that I was on too much thyroid because of my suppressed TSH. My most

recent bloods in June were FT4 11(12-22) and he told me that I was " still on too

much " as my TSH was " suppressed " . When I disagreed, he proceeded to explain to

me what TSH is and how it works. He alos told that there was a " risk of atrial

fibrilation and bone loss. A small one, but still there " *rolleyes*

>

[Guest guest]

Hi

I am afraid that would make my case worse, as it says that a TSH of less than

0.03 can cause heart issues and bone loss. The very things he was saying I would

get.

I will bring him in the other paper posted and that may help my cause.

If not though, how should I handle it so that he will concentrate on my adrenals

only?

Lynn

From Southern Ireland