New member - (sorry, long-ish) possible secondary hypothyroidism?

[Guest guest]

Hi - my screen name is D'bora and I was diagnosed with hypothyroidism

approximately two years ago, after being misdiagnosed with " atypical "

depression and/or Seasonal Affective Disorder for about 10 years.

Part of the reason for the misdiagnosis was that repeated TSH tests

over the years (they did at least check that) kept coming back normal

or low-normal. However, two years ago my symptoms had progressed to

the point that they were so " classic " that despite yet another normal

TSH I insisted on a T4 test, which confirmed my suspicions.

I am negative for antibodies, so not Hashimoto's, negative history

for all other usual causes (surgery, etc). Thyroid is not enlarged at

all. Given the history of repeated normal to low-normal TSH and low

T4 readings at the time, I wondered about secondary hypothyroidism

(pituitary or hypothalamus). My concerns were completely dismissed, I

was told in no uncertain terms that I would have to live with a

diagnosis of " unknown cause " . I was prescribed Synthroid and we

fiddled with the dose until T4 was finally back up in the middle of

normal range (I'm at 0.1 right now). It has stayed there for a while

and I have felt better, but still not myself, you know?

So here we are two years later, some symptoms are not resolving -

most notable are memory problems, fatigue and low libido, which is

now almost nil despite the fact I am only in my mid-30s. So, 2 weeks

ago they tested prolactin for the first time and TSH again. Prolactin

is 4 (they tell me up to 20 is normal). TSH has been falling over the

last year (0.53 to 0.48) and has now taken a nose-dive to 0.15 (0.3

is low end of normal range for this lab). However, I am not over

supplemented, T4 has remained in mid-range for a year (I'll ask them

to re-check, though) and I have no hyperthyroid symptoms.

In the last year I have also had visual disturbances (some quite

marked, with significant loss of peripheral vision), recurrent

headaches (no history of migraines) and a recurrance of carpal tunnel

syndrome despite the Synthroid. Together with some other things, the

stuff I've read recommends investigation for secondary hypothyroidism.

My GP is away right now, as he has been through a lot of this - it

was a replacement doc who listened when I asked for the T4 test, and

yet another replacement a couple weeks later who said " live with

unknown cause " . FYI, I live in the subarctic so I don't have a lot of

choice here. I have an appointment with yet another replacement doc

tomorrow and I am wondering how hard I should go on asking for 1)

additional tests such as TRH, 2) a CAT scan or MRI and/or 3) referral

to an endocrinologist. They can do a CAT scan here but an MRI would

require a long plane ride, as would a face-to-face with an

endocrinologist. Luckily, I'm Canadian so I do have health care to

cover whatever I need - I just may have to wait a long, long time.

Are there others here who have had a similar situation? Am I being

paranoid here? I have some background in the biological sciences so I

think I understand most of what I read. It sure seems to be adding up

that I should be tested for secondary hypothyroidism, given what are

once again becoming " classic " symptoms.

Any thoughts or shared experiences of secondary hypothyroidism

appreciated,

D'bora

[Guest guest]

I have hypopituitarism which is causing hypothyroid, 's

disease, and hypogonadism.

First thing I highly recommend it an MRI to see if you have pituitary

cancer. If not then you may have had a head injury sometime in your

past. If this is found negative move on to next paragraph.

------------------

It sounds like you have hypopituitarism with both low TSH and

prolactin. I highly suggest you find another doctor though as your

GP can not put in the time it is going to take to fix you.

Find an osteropath. I am treated by an environmental doc (is like

osteopath) and he is awesome.

If you have other pituitary problems like low LH and ACTH (low

estrogen and cortisol respectively) then treating your thyroid will

only bring you about half way up.

Feel free to email me. I try to get contacts with other

hypopituitaries as there is no support group for us. I'll help you

figure out things as you go. With hypopituitarism you have several

diseases so it can become overwelming.

I'm 37 and looking at past med records and the events of my life, my

parents and I figure I got hypopituitarism from a car accident where

my face hit the dash board when I was two. I had troubles my whole

life. We figured this out as before I had car accident, I had

tonsils and adenoids removed. My parents said nothing happened to

me. Any time I had anesthesia after that (next time was 16 years

old) it would totally wreck me.

Stay away from anesthesia and surgeries until you are figured out.

Good luck and hope you write me,

Chris

> Hi - my screen name is D'bora and I was diagnosed with

hypothyroidism

> approximately two years ago, after being misdiagnosed

with " atypical "

> depression and/or Seasonal Affective Disorder for about 10 years.

>

> Part of the reason for the misdiagnosis was that repeated TSH tests

> over the years (they did at least check that) kept coming back

normal

> or low-normal. However, two years ago my symptoms had progressed to

> the point that they were so " classic " that despite yet another

normal

> TSH I insisted on a T4 test, which confirmed my suspicions.

>

> I am negative for antibodies, so not Hashimoto's, negative history

> for all other usual causes (surgery, etc). Thyroid is not enlarged

at

> all. Given the history of repeated normal to low-normal TSH and low

> T4 readings at the time, I wondered about secondary hypothyroidism

> (pituitary or hypothalamus). My concerns were completely dismissed,

I

> was told in no uncertain terms that I would have to live with a

> diagnosis of " unknown cause " . I was prescribed Synthroid and we

> fiddled with the dose until T4 was finally back up in the middle of

> normal range (I'm at 0.1 right now). It has stayed there for a

while

> and I have felt better, but still not myself, you know?

>

> So here we are two years later, some symptoms are not resolving -

> most notable are memory problems, fatigue and low libido, which is

> now almost nil despite the fact I am only in my mid-30s. So, 2

weeks

> ago they tested prolactin for the first time and TSH again.

Prolactin

> is 4 (they tell me up to 20 is normal). TSH has been falling over

the

> last year (0.53 to 0.48) and has now taken a nose-dive to 0.15 (0.3

> is low end of normal range for this lab). However, I am not over

> supplemented, T4 has remained in mid-range for a year (I'll ask

them

> to re-check, though) and I have no hyperthyroid symptoms.

>

> In the last year I have also had visual disturbances (some quite

> marked, with significant loss of peripheral vision), recurrent

> headaches (no history of migraines) and a recurrance of carpal

tunnel

> syndrome despite the Synthroid. Together with some other things,

the

> stuff I've read recommends investigation for secondary

hypothyroidism.

>

> My GP is away right now, as he has been through a lot of this - it

> was a replacement doc who listened when I asked for the T4 test,

and

> yet another replacement a couple weeks later who said " live with

> unknown cause " . FYI, I live in the subarctic so I don't have a lot

of

> choice here. I have an appointment with yet another replacement doc

> tomorrow and I am wondering how hard I should go on asking for 1)

> additional tests such as TRH, 2) a CAT scan or MRI and/or 3)

referral

> to an endocrinologist. They can do a CAT scan here but an MRI would

> require a long plane ride, as would a face-to-face with an

> endocrinologist. Luckily, I'm Canadian so I do have health care to

> cover whatever I need - I just may have to wait a long, long time.

>

> Are there others here who have had a similar situation? Am I being

> paranoid here? I have some background in the biological sciences so

I

> think I understand most of what I read. It sure seems to be adding

up

> that I should be tested for secondary hypothyroidism, given what

are

> once again becoming " classic " symptoms.

>

> Any thoughts or shared experiences of secondary hypothyroidism

> appreciated,

> D'bora

[Guest guest]

Hi D'bora, welcome!

They've ran a lot of tests.. you've watched your TSH go down.. you've

watched your T4 come up a bit.. but the symptoms are not acceptable...

Can you have some more tests run?

I'll run through some quick definitions to review...

TSH - thyroid stimulating hormone, signal from the pituitary to the

thyroid to regulate the out put of thyroid hormone.

Free T4 - the amount of T4, the storage hormone, available for use in the

blood stream

Free T3 - the amount of T3, the active hormone, available for use in the

blood stream.

Reverse T4 - the amount of unusable T4

Reverse T3 - the amount of unusable T3

Total T4 - the amount of both free and reverse T4

Total T3 - the amount of both free and reverse T3

So.... once you are on thyroid hormone.. TSH really doesn't tell you

much....

Reverse Ts only tell you what can't be used.. so that isn't worth much.

Total Ts tell you how much of each is in your blood stream, but doesn't

tell you what is usable and what is not.

Free Ts.. hmmm.. these numbers tell you the amounts of the actual usable

hormones you have available in your blood for your body to use.

So... if you could get the levels of the Free T3 and the Free T4.. we'll

have a bit better idea of what your body is doing....

Now... a step further.... You are on a T4 only synthetic hormone. That

means that your body is responsible for providing the T3 that your body

needs to function... it does this through a process called conversion.

What happens is that a T4 molecule is stripped of an iodine molecule

(this occurs at the cellular level, throughout the body) and turned into

a T3 molecule.

There are several things that can affect how efficient your body performs

this conversion process. Calcium and iron levels in the blood and

insufficient blood sugar (energy) to allow the chemical conversion

process.

So.... with the proper tests we'll be able to see several things

.... if your current dose is adequate

..... if your absorption rate is adequate

.... if your conversion rate is adequate

That doesn't answer the question as to the WHY you need the hormone

replacement...

It could be secondary, as you suspect..

....it could be thyroid hormone resistance...

it could be genetic - what I've got... genetically defective TSH

receptors... the thyroid gland has no instruction and so has no way to

know how much hormone is put out. In which case the TSH has absolutely

nothing to do with anything. The thyroid gland may have shut down, or

nearly so.. and the Synthroid you are taking now is inadequate for your

body's needs.

Are you paranoid? NO WAY!!!!

You know that there is something wrong... many of us have felt that..

that gnawing inside that says this isn't right... and no one seems to be

too concerned with what you are saying... and they aren't taking all of

the correct tests to see what is going on... anyone that is on thyroid

hormone replacement SHOULD HAVE FREE T's CHECKED EVERY TIME they have

their labs PERIOD. To see how they are doing... checking TSH alone at

that point is totally worthless.

Once on meds having a low TSH (under 1 and even less) does not, by

itself, indicate hyperthyroid.. it simply means that the pituitary is

seeing that there is no need to be screaming at the thyroid gland to

produce more hormone.

But... just because the TSH is low does NOT mean that thyroid

supplementation is adequate for the individual... it's only saying that

the pituitary is not in a panic.... the thyroid hormones could still be

too low for the body to function properly... and therefore you experience

the symptoms, fatigue, brain fog, depression, etc.....

Until you are able to have your labs run.. there are some tests that you

can do at home.. I posted these a couple of days ago... if you can't find

them I'll post again.... Checking your basal temp, resting heart rate and

resting pulse is a very good window to how your metabolic rate is doing..

a very good indicator on how your thyroid supplementation is doing...

Ready gang???? this is going to be an interesting puzzle for us to figure

out!!!

Topper ()

On Thu, 10 Jun 2004 19:31:07 -0000 " dbora67 "

writes:

> Hi - my screen name is D'bora and I was diagnosed with hypothyroidism

> approximately two years ago, after being misdiagnosed with

> " atypical "

> depression and/or Seasonal Affective Disorder for about 10 years.

> Part of the reason for the misdiagnosis was that repeated TSH tests

> over the years (they did at least check that) kept coming back normal

> or low-normal. However, two years ago my symptoms had progressed to

> the point that they were so " classic " that despite yet another normal

> TSH I insisted on a T4 test, which confirmed my suspicions.

> I am negative for antibodies, so not Hashimoto's, negative history

> for all other usual causes (surgery, etc). Thyroid is not enlarged at

> all. Given the history of repeated normal to low-normal TSH and low

> T4 readings at the time, I wondered about secondary hypothyroidism

> (pituitary or hypothalamus). My concerns were completely dismissed,

> I was told in no uncertain terms that I would have to live with a

> diagnosis of " unknown cause " . I was prescribed Synthroid and we

> fiddled with the dose until T4 was finally back up in the middle of

> normal range (I'm at 0.1 right now). It has stayed there for a while

> and I have felt better, but still not myself, you know?

> So here we are two years later, some symptoms are not resolving -

> most notable are memory problems, fatigue and low libido, which is

> now almost nil despite the fact I am only in my mid-30s. So, 2 weeks

> ago they tested prolactin for the first time and TSH again. Prolactin

> is 4 (they tell me up to 20 is normal). TSH has been falling over the

> last year (0.53 to 0.48) and has now taken a nose-dive to 0.15 (0.3

> is low end of normal range for this lab). However, I am not over

> supplemented, T4 has remained in mid-range for a year (I'll ask them

> to re-check, though) and I have no hyperthyroid symptoms.

> In the last year I have also had visual disturbances (some quite

> marked, with significant loss of peripheral vision), recurrent

> headaches (no history of migraines) and a recurrance of carpal

> tunnel

> syndrome despite the Synthroid. Together with some other things, the

> stuff I've read recommends investigation for secondary hypothyroidism.

> My GP is away right now, as he has been through a lot of this - it

> was a replacement doc who listened when I asked for the T4 test, and

> yet another replacement a couple weeks later who said " live with

> unknown cause " . FYI, I live in the subarctic so I don't have a lot of

> choice here. I have an appointment with yet another replacement doc

> tomorrow and I am wondering how hard I should go on asking for 1)

> additional tests such as TRH, 2) a CAT scan or MRI and/or 3)

> referral

> to an endocrinologist. They can do a CAT scan here but an MRI would

> require a long plane ride, as would a face-to-face with an

> endocrinologist. Luckily, I'm Canadian so I do have health care to

> cover whatever I need - I just may have to wait a long, long time.

> Are there others here who have had a similar situation? Am I being

> paranoid here? I have some background in the biological sciences so

> I

> think I understand most of what I read. It sure seems to be adding

> up

> that I should be tested for secondary hypothyroidism, given what are

> once again becoming " classic " symptoms.

> Any thoughts or shared experiences of secondary hypothyroidism

> appreciated,

> D'bora