Hello. What should I ask endocrinologist to look at?

[Guest guest]

Hello, I'm sort of new to the group. By way of background, I've had

CFS & fibromyalgia for 30 years. During that time my thyroid has been

overactive at least twice, and underactive for at least the past 15

years. I sometimes need to eat every 3 hours to avoid low blood sugar

problems.

I'm seeing an endocrinologist tomorrow for water diabetes (diabetes

insipidus). This is totally different than sugar diabetes. AFAIK,

the only commonality is constant thirst and frequent urination. Per

Wikipedia " DI is caused by a deficiency of antidiuretic hormone (ADH),

also known as vasopressin, due to the destruction of the back or

" posterior " part of the pituitary gland where vasopressin is normally

released from, or by an insensitivity of the kidneys to that hormone.

It can also be induced iatrogenically by various drugs. "

Apparently, DI is present in half of the CFS population.

Anyway, I have what may be a stupid question, as well as a last-minute

one. While I'm there, I plan to ask him to check my adrenal glands &

review my current thyroid situation/meds. Is there anything else I

should ask about?

[Guest guest]

Hi Liz,

Welcome to the group - your problems are very common

(unfortunately). I've never heard of the low ADH referred to

as " water diabetes " and I didn't know that an endocrinologist could

do much to treat it. I was Rxed DDAVP, but decided not to take it

since I am able to keep my osmoality down by drinking lots of water

with electrolytes. I'd be curious what they will say. I'd also be

curious if they understand why it's common in folks with CFS/FM.

You might want to take a look at this biotoxin website:

www.biotoxin.info as this Dr. Shoemaker believes that many of the

hormonal problems we have (including low ADH) are due to damage of

the hypothalamus by toxins (environmental and endotoxins that are

produced by fungal, bacterial and viral infections). Do you know if

you also have low MSH - Melanocyte Stimulating Hormone? That is

often the cause of the fatigue and muscle aches (and of course, low

thyroid also contributes to this).

For most of us the blood tests for adrenals isn't particularly

helpful unless they happen to run it during the time of day when you

MIGHT be low. Many of us end up with lots of dips (below normal),

but it's generally fairly inconsistent. Saliva tests are good in

that the measure adrenal function 4x/day. The blood sugar issues

can be due to adrenal issues and for me, they're supposedly to do

fungal overgrowth. Some of us do well on an anti-yeast (and gluten-

free) diet - with protein at each of those small meals.

If they've never measured your thyroid antibodies (TPO and anti-

thyroglobulin) then they absolutely should as your symptoms sound

like autoimmune thyroid disease - the swings from hyper to hypo.

Also, as we always say on this list, the best indicators of how well

your thyroid replacement hormones are working are your Free T3, Free

T4 and whether you've had symptom resolution. I was just reading

some recent FM research and 90% of FM patients are low thyroid and

based on many of our experiences, getting adequate treatment to

relieve the symptoms can be the biggest problem after finding the

low thyroid problem.

Good luck.

B.

>

> Hello, I'm sort of new to the group. By way of background, I've had

> CFS & fibromyalgia for 30 years. During that time my thyroid has

been

> overactive at least twice, and underactive for at least the past 15

> years. I sometimes need to eat every 3 hours to avoid low blood

sugar

> problems.

>

> I'm seeing an endocrinologist tomorrow for water diabetes (diabetes

> insipidus). This is totally different than sugar diabetes. AFAIK,

> the only commonality is constant thirst and frequent urination. Per

> Wikipedia " DI is caused by a deficiency of antidiuretic hormone

(ADH),

> also known as vasopressin, due to the destruction of the back or

> " posterior " part of the pituitary gland where vasopressin is

normally

> released from, or by an insensitivity of the kidneys to that

hormone.

> It can also be induced iatrogenically by various drugs. "

>

> Apparently, DI is present in half of the CFS population.

>

> Anyway, I have what may be a stupid question, as well as a last-

minute

> one. While I'm there, I plan to ask him to check my adrenal glands

&

> review my current thyroid situation/meds. Is there anything else I

> should ask about?

>