RE: Barb - POTS -Thyroid (LONG REPLY)

[Guest guest]

Hi Bernie,

> Not to be rude but how old are you.

No offense taken. I am 32.

> Dr. Grubb told Marit that the POTS would improve at about age 25.

I began having symptoms of POTS at the age of 15. For YEARS we had no idea

why I would faint every time I stood up. Numerous incompetent doctors tried

lots of treatments. One doctor said I was " obviously " hypoglyecemic and put

me on a sugar-free diet at age 17. Of course, he didn't " waste time " with a

glucose tolerance test, which would have proven him wrong, I have been

tested and am NOT hypoglycemic. Another doctor had me take salt tablets and

eat salty food and drink lots of water because I was dehydrated. During

this time, I also experienced symptoms of chronic fatigue from the age of 15

until my early 20s.

Finally, when I was about 21 I had a good doctor who diagnosed EDS and

recommended caffeine to treat the POTS. She said the POTS was because I had

low bp and when I stood up, the blood wasn't reaching my brain. I started

taking caffeine (4 cups of coffee) in the morning and then restricted all

caffeine intake the rest of the day. Over time, the symptoms improved and

became managable. If I skipped my coffee even one day, the fainting would

return in 24-48 hours.

> At what age did you have your thyroid treated and what tests

> aside from TSH and basic thyroid tests were done to establish low

> thyroxine levels.

I was first diagnosed with borderline hypo about 5 or 6 years ago by a

doctor I had only been seeing for about 6 months. At the time, I didn't

believe I had any symptoms. In fact, I was feeling pretty good. The doctor

only did a TSH test which was high for the first time ever. She had a nurse

call me and start me on Synthroid WITHOUT ANY CONSULTATION! I had NO CLUE

what the Synthroid was for, how long I would have to take it, or anything.

I started reading about hypothyroid and figured out that once you start the

meds, you have to continue to take them. I had the blood tests redone by

another lab and sent the results to two other doctors. The doctor who had

originally diagnosed the EDS said there was no reason to start medication as

the test results were normal. The other doctor consulted an

endocrinologist. The endocrinologist said the results indicated that I

*might* have a problem starting, but it wasn't present yet. He suggested

that I could start Synthroid and avoid having any symptoms in the future or

I could choose to wait until it became a problem.

I began taking the prescribed Synthroid, but it made me incredibly sick. I

literally sat at my desk at work and couldn't remember the name of the

company I worked for to answer the phone! My body felt heavy and it was an

effort to even move. My husband had to pick me up from work and drive me

home that day. I spoke to the doctors and decided to go off the Synthroid.

Then I fired the one who originally prescribed the medication, not for

prescribing it, but for failing to give me all the information I needed to

make a good decision.

I am 5' 6 " and most of my adult life, I weighed 125 lb. The " healthy " range

for my height is 124-154. I was at the lower end of the range. In 1994,

after my divorce, I was 115. In 1995, I had a tubal ligation and went off

birth control pills. Thyroid problems are often triggered by hormonal

changes like menopause, going on or off the pill, etc. I suspect that the

surgery and hormonal changes associated with it were the trigger that

started my thyroid to fail. However, since my diagnosis, my mother has also

been diagnosed hypothyroid, and I think I inherited the predisposition for

it from her.

I was diagnosed with hypothyroid by a different doctor in 2001. This time,

I started with Levoxyl instead of Synthroid. This doctor explained things

to me in a consultation. After the diagnosis, I did a lot of reading on

thyroid conditions. I'd read some information the first time around, but

there were a lot more resources available to me in 2001 than there had been

before.

Even then, I felt I really had very few symptoms of hypothyroid that could

not also be attributed to EDS, except that I had gained weight. When I was

diagnosed, I weighed 173 lb. I had gained 48 lb from my " normal " weight

over a period of about 7-8 years. I didn't think much of it because I

attributed it to the change in lifestyle. Pre-EDS diagnosis, I was in dance

classes 4 nights a week or more. After my diagnosis, all my doctors were

afraid I would get hurt and I stopped exercising all together. Aside from

that, I had no other obvious symptoms. I was losing hair, but I didn't know

it because my husband was cleaning out the hairbrush and shower drain every

morning. My hair is so thick and full, I didn't notice anything missing.

In retrospect, I am sure that I did have a problem when I was diagnosed the

first time, but I was in a state of flux. Often, when the thyroid first

starts to fail, the hormones can jump in and out of range for months. I

have reviewed the lab reports from the first two tests and there was a huge

difference in the TSH figures. The more I have learned over the past 2

years, the more I see that the signs were there.

> I think it would be very worthwhile pursuing this, as

> Marit feels cold so much of the time.

Feeling cold all the time is common with hypothyroid. I didn't think of

that much as I already knew I had poor blood circulation, so cold hands and

feet weren't really unusual for me.

> Also, I am hypothyroid and take

> thyroxine. Do you know of any research out there to substantiate

> question of hypothyroidism in EDS or to assess hypothyroid symptoms when

> the usual thyroid tests come back normal?

I don't know of any research connecting EDS to thyroid problems, but thyroid

problems are COMMON in the general population, especially in women.

There is a lot of research on " subclinical hypothyroid " which is symptoms of

a thyroid condition when the blood tests are " within normal range. " The

American Academy of Clinical Endocrinologists has recommended revised

testing standards, but many labs have been slow in adopting the new

standards.

There are two main tests for hypothyroid - TSH and T4. Typically, doctors

test only TSH. Only when TSH is out of range will a doctor do T4 testing.

The new studies are finding that people can have normal TSH and still have a

problem. TSH is a hormone produced by the pituitary gland to stimulate the

thyroid into producing T4, hence the name " Thyroid Stimulating Hormone. "

When the thyroid produces too much T4, the pituitary produces less TSH.

When the thyroid isn't producing enough T4, the pituitary produces more TSH

to stimulate the thyroid. The problem with only testing TSH is that some

people may have inadequate thyroid function, but the pituitary gland doesn't

respond to it adequately, thereby producing " normal " test results. For

people whose TSH results are " borderline " and experience symptoms of thyroid

problems, they are most likely hypothyroid, but their doctors don't

recognize it because they are still " in range " on the bloodwork. Because

doctors often refuse to test T4 until TSH is out of range, they completely

miss diagnosing these individuals. This was the case with my mother. She

probably had thyroid problems for DECADES and was never diagnosed. It

wasn't until I was diagnosed, recognized the symptoms in her, and then

DEMANDED that her doctor do the T4 testing that she was finally diagnosed.

She has had far worse problems with it than I have ever had - depression,

hair loss, weight, fatigue.

The single best source for thyroid information on the web, in my opinion, is

about.com's thyroid pages by Shomon. http://www.thyroid.about.com.

From here, you can read all about the thyroid function, thyroid problems,

symptom charts, lab test result charts, latest research, available

medications, and more.

I have been treated for the thyroid problems for over 2 years now. For the

past year, my dose has remained fixed at 112 micrograms of Levoxyl. My TSH

and T4 are actually fluctuating in the *same* direction lately, rather than

moving in opposite directions. My TSH is quite low, almost low enough to

indicate that I am being over-prescribed, but my T4 is also going down

instead of up. A year ago, my weight had gotten as low as 159. As of last

week, I am back up to 170. Mom and I both eat very little, so it's

difficult to cut back on food. With work, volunteering, and now school, it

is also hard to find time to exercise. My cholesterol has always been good,

but this January it went up to 219. I plan to see the doctor next month and

redo my bloodwork and will likely insist on increasing my Levoxyl dose.

With thyroid problems, it is a constant struggle to lose weight and a

maintain the right dose. Fortunately, though now I can at least brush my

hair without losing much of it.

Hope this helps. Sorry that it was so long.

-Barb

[Guest guest]

Hi Bernie,

> Not to be rude but how old are you.

No offense taken. I am 32.

> Dr. Grubb told Marit that the POTS would improve at about age 25.

I began having symptoms of POTS at the age of 15. For YEARS we had no idea

why I would faint every time I stood up. Numerous incompetent doctors tried

lots of treatments. One doctor said I was " obviously " hypoglyecemic and put

me on a sugar-free diet at age 17. Of course, he didn't " waste time " with a

glucose tolerance test, which would have proven him wrong, I have been

tested and am NOT hypoglycemic. Another doctor had me take salt tablets and

eat salty food and drink lots of water because I was dehydrated. During

this time, I also experienced symptoms of chronic fatigue from the age of 15

until my early 20s.

Finally, when I was about 21 I had a good doctor who diagnosed EDS and

recommended caffeine to treat the POTS. She said the POTS was because I had

low bp and when I stood up, the blood wasn't reaching my brain. I started

taking caffeine (4 cups of coffee) in the morning and then restricted all

caffeine intake the rest of the day. Over time, the symptoms improved and

became managable. If I skipped my coffee even one day, the fainting would

return in 24-48 hours.

> At what age did you have your thyroid treated and what tests

> aside from TSH and basic thyroid tests were done to establish low

> thyroxine levels.

I was first diagnosed with borderline hypo about 5 or 6 years ago by a

doctor I had only been seeing for about 6 months. At the time, I didn't

believe I had any symptoms. In fact, I was feeling pretty good. The doctor

only did a TSH test which was high for the first time ever. She had a nurse

call me and start me on Synthroid WITHOUT ANY CONSULTATION! I had NO CLUE

what the Synthroid was for, how long I would have to take it, or anything.

I started reading about hypothyroid and figured out that once you start the

meds, you have to continue to take them. I had the blood tests redone by

another lab and sent the results to two other doctors. The doctor who had

originally diagnosed the EDS said there was no reason to start medication as

the test results were normal. The other doctor consulted an

endocrinologist. The endocrinologist said the results indicated that I

*might* have a problem starting, but it wasn't present yet. He suggested

that I could start Synthroid and avoid having any symptoms in the future or

I could choose to wait until it became a problem.

I began taking the prescribed Synthroid, but it made me incredibly sick. I

literally sat at my desk at work and couldn't remember the name of the

company I worked for to answer the phone! My body felt heavy and it was an

effort to even move. My husband had to pick me up from work and drive me

home that day. I spoke to the doctors and decided to go off the Synthroid.

Then I fired the one who originally prescribed the medication, not for

prescribing it, but for failing to give me all the information I needed to

make a good decision.

I am 5' 6 " and most of my adult life, I weighed 125 lb. The " healthy " range

for my height is 124-154. I was at the lower end of the range. In 1994,

after my divorce, I was 115. In 1995, I had a tubal ligation and went off

birth control pills. Thyroid problems are often triggered by hormonal

changes like menopause, going on or off the pill, etc. I suspect that the

surgery and hormonal changes associated with it were the trigger that

started my thyroid to fail. However, since my diagnosis, my mother has also

been diagnosed hypothyroid, and I think I inherited the predisposition for

it from her.

I was diagnosed with hypothyroid by a different doctor in 2001. This time,

I started with Levoxyl instead of Synthroid. This doctor explained things

to me in a consultation. After the diagnosis, I did a lot of reading on

thyroid conditions. I'd read some information the first time around, but

there were a lot more resources available to me in 2001 than there had been

before.

Even then, I felt I really had very few symptoms of hypothyroid that could

not also be attributed to EDS, except that I had gained weight. When I was

diagnosed, I weighed 173 lb. I had gained 48 lb from my " normal " weight

over a period of about 7-8 years. I didn't think much of it because I

attributed it to the change in lifestyle. Pre-EDS diagnosis, I was in dance

classes 4 nights a week or more. After my diagnosis, all my doctors were

afraid I would get hurt and I stopped exercising all together. Aside from

that, I had no other obvious symptoms. I was losing hair, but I didn't know

it because my husband was cleaning out the hairbrush and shower drain every

morning. My hair is so thick and full, I didn't notice anything missing.

In retrospect, I am sure that I did have a problem when I was diagnosed the

first time, but I was in a state of flux. Often, when the thyroid first

starts to fail, the hormones can jump in and out of range for months. I

have reviewed the lab reports from the first two tests and there was a huge

difference in the TSH figures. The more I have learned over the past 2

years, the more I see that the signs were there.

> I think it would be very worthwhile pursuing this, as

> Marit feels cold so much of the time.

Feeling cold all the time is common with hypothyroid. I didn't think of

that much as I already knew I had poor blood circulation, so cold hands and

feet weren't really unusual for me.

> Also, I am hypothyroid and take

> thyroxine. Do you know of any research out there to substantiate

> question of hypothyroidism in EDS or to assess hypothyroid symptoms when

> the usual thyroid tests come back normal?

I don't know of any research connecting EDS to thyroid problems, but thyroid

problems are COMMON in the general population, especially in women.

There is a lot of research on " subclinical hypothyroid " which is symptoms of

a thyroid condition when the blood tests are " within normal range. " The

American Academy of Clinical Endocrinologists has recommended revised

testing standards, but many labs have been slow in adopting the new

standards.

There are two main tests for hypothyroid - TSH and T4. Typically, doctors

test only TSH. Only when TSH is out of range will a doctor do T4 testing.

The new studies are finding that people can have normal TSH and still have a

problem. TSH is a hormone produced by the pituitary gland to stimulate the

thyroid into producing T4, hence the name " Thyroid Stimulating Hormone. "

When the thyroid produces too much T4, the pituitary produces less TSH.

When the thyroid isn't producing enough T4, the pituitary produces more TSH

to stimulate the thyroid. The problem with only testing TSH is that some

people may have inadequate thyroid function, but the pituitary gland doesn't

respond to it adequately, thereby producing " normal " test results. For

people whose TSH results are " borderline " and experience symptoms of thyroid

problems, they are most likely hypothyroid, but their doctors don't

recognize it because they are still " in range " on the bloodwork. Because

doctors often refuse to test T4 until TSH is out of range, they completely

miss diagnosing these individuals. This was the case with my mother. She

probably had thyroid problems for DECADES and was never diagnosed. It

wasn't until I was diagnosed, recognized the symptoms in her, and then

DEMANDED that her doctor do the T4 testing that she was finally diagnosed.

She has had far worse problems with it than I have ever had - depression,

hair loss, weight, fatigue.

The single best source for thyroid information on the web, in my opinion, is

about.com's thyroid pages by Shomon. http://www.thyroid.about.com.

From here, you can read all about the thyroid function, thyroid problems,

symptom charts, lab test result charts, latest research, available

medications, and more.

I have been treated for the thyroid problems for over 2 years now. For the

past year, my dose has remained fixed at 112 micrograms of Levoxyl. My TSH

and T4 are actually fluctuating in the *same* direction lately, rather than

moving in opposite directions. My TSH is quite low, almost low enough to

indicate that I am being over-prescribed, but my T4 is also going down

instead of up. A year ago, my weight had gotten as low as 159. As of last

week, I am back up to 170. Mom and I both eat very little, so it's

difficult to cut back on food. With work, volunteering, and now school, it

is also hard to find time to exercise. My cholesterol has always been good,

but this January it went up to 219. I plan to see the doctor next month and

redo my bloodwork and will likely insist on increasing my Levoxyl dose.

With thyroid problems, it is a constant struggle to lose weight and a

maintain the right dose. Fortunately, though now I can at least brush my

hair without losing much of it.

Hope this helps. Sorry that it was so long.

-Barb

[Guest guest]

Barb: Thanks for your story. It has some interesting aspects somewhat

similar to my own experience. I wonder if there has ever been any

research done on seasonal or short daylight levels of TSH or T4. My own

observations of my body suggests strongly to me that I have hormonal

level changes (higher levels) I believe during seasons of long daylight

hours. We know all too well that animals have seasonal hormonal changes

and one thing I think that medicine has ignored totally is that we are

part of the animal kingdom and must be subject to those same changes.

Makes a lot of sense to me in regards to being within the low " normal "

rang and the top end of " normal " at another time. It makes a lot of

sense to me since the pituitary controls it all. Doing thyroid check

could well be worthwhile.

Thanks much, Bernie

Re: Barb - POTS -Thyroid (LONG REPLY)

* Hi Bernie,

> Not to be rude but how old are you.

No offense taken. I am 32.

> Dr. Grubb told Marit that the POTS would improve at about age 25.

I began having symptoms of POTS at the age of 15. For YEARS we had no

idea

why I would faint every time I stood up. Numerous incompetent doctors

tried

lots of treatments. One doctor said I was " obviously " hypoglyecemic and

put

me on a sugar-free diet at age 17. Of course, he didn't " waste time "

with a

glucose tolerance test, which would have proven him wrong, I have been

tested and am NOT hypoglycemic.