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Re: Fluctuating TSH-Went to Endo & was told I have Chronic Fatigue or Depression

Re: Fluctuating TSH-Went to Endo & was told I have Chronic Fatigue or Depression

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Posted by Tina on August 26, 2000 at 15:14:10:

In Reply to: Re: Fluctuating TSH-Went to Endo & was told I have Chronic Fatigue or Depression posted by Deb on August 25, 2000 at 19:03:57:

: : : : : Please Help,

: : : : : I am 27 yrs old and have been told that I have Hasimoto's Disease. I have has TSH test results that have gone from 3 to 11 to .5 after having a baby 6 months ago. My Family Practice Dr referred me to an Endocrine specialist. After going to the specialist I NEVER want to go to the Dr. again!!!! He told me that my Family Practice Dr. should not be ordering blood tests every 30 days, and that I probably have Depression or Chronic Fatigue. I have been taking synthroid since I was about 9 years old and since I had my son, who is now 7 years old my thyroid has been changing and I there are very few day's that I am not crashing at work by 2:30 or 3:00. I am getting about 8-9 hours of sleep a night. My husband is frustrated because I am always tired and never have the desire for sex.

: : : : : I don't know which way to turn.

: : : : : I'm frustrated and tired.

: : : : : Any help would be greatly appreciated.

: : : : Dear Deb,

: : : : I'm so sorry to hear what the so-called specialist told you because Depression and Chronic Fatigue Syndrome ARE symptoms of Thyroid disease and of Under treated thyroid disease! This sort of thing happens to many people that go to an Endocrinologist
: : : : Since most of them specialize in diabetes not in thyroid disorders! I believe that your Family Doctor was trying to do the right thing "for you" by checking your levels every 30 days considering the way they are fluctuating like that. Many people do experience problems with their thyroid after giving birth although I can't tell you the reason for this or what to about it. I've not studied this aspect of the disease much as it hits in the late 30's in my family, sorry! I can recommend a book where you can find out more information on it though. The book is "Living Well with Hypothyroidism: What Your Doctor Doesn't Tell You That you need to know" by Mary J. Shomon. This book will also help you see if there is something that you are eating or any other medications that you are taking that could be interfering with your thyroid medications. Foods high in Iodine can interferr (shell fish, salt, cabbage, ect.), Soy is another no-no for a lot of us and is added to many foods that we don't even think about such as bread, margerine, cooking oils, flour, prepackaged and frozen food to name just a few. Check all the prescription and OCT's that you are taking many can interact with your thyroid hormones. Things like this are in Mary's book and make it invaluable!

: : : : To better understand the connection between CFS, FM, and thyroid problems see this interview. It explains how these so-called "new" disorders appeared just a few years after the TSH test was "voted" the gold standard by the Endocrinologists. Yet they were described as symptoms of a thyroid disorder back in the '30's!

: : : : Read the entire interview with Dr. David Derry, M.D., Phd
: : : : http://thyroid.about.com/health/thyroid/library/weekly/aa072500a.htm?terms=Dr.+Derry

: : : : There is a link to Dr. Derry's credentials there also, be interesting to send this "unenlightened" Endo a copy of both with a letter explaining how disappointed you were with his treatment. Copy it to your insurance carrier for an extra punch! I see this as a way of "getting the message out" that we will not accept poor care for the high prices we pay for medical care.

: : : : Do you think that your Family Doctor would be willing to look at articles such as this and try different things that might help you? Sounds like he/she cares, so it might be worth a try. Here are some of the things you could try…
: : : : Adding a T3 hormone to your Snythroid such as Cytomel. T3 is the active form of the thyroid hormone.
: : : : This article will give a link to the study reported in the NEJM (New England Journal of Medicine) on adding T3.
: : : : Research Finds Most Patients Feel Better with Addition of T3, Not Levothyroxine (i.e.,
: : : : Synthroid) Alone!!!
: : : : http://thyroid.about.com/health/thyroid/library/weekly/aa021199.htm

: : : : You might also ask about switching to a natural thyroid hormone to see if that helps.
: : : : This would contain both the T4, T3 plus T1 and T2, which although they know of the existence of these substances they have never done any research to find out what they do!
: : : : This article contains more information on the benefits of using a natural hormone. interview with Dr. Brownstein
: : : : http://thyroid.about.com/health/thyroid/library/weekly/aa071700a.htm

: : : : For those of us that just taking the magic "one little pill a day" doesn't work for it can be a hard road of learning and trying different approaches but it can be done and we can be helped. So, hang in there, you will be amazed to find out how many people are in the same boat you are in and they are out there now trying to make a difference in the kind of treatment we have received from the professionals.

: : : : Hope something in this little "book" I've written can be of help to you. Sincerely, Tina
: : : :

: : : Tina,

: : : It is so good the hear that I am not just "losing my mind" I just spoke to my Family Practice nurse to get a print out of my levels from the last year. When I told here that this "Specilaist" didn't even do a blood test she was quite surprised.

: : : I didn't know that shell fish and salt weren't good for me. Those are a few of my favorite foods.

: : : I will be picking up my test results from the Dr. tonight so hopefully I will be able to figure out more.

: : : Thanks again,

: : :
: : : Deb

: : Hi Deb,

: : Great to hear that you will be getting your test results tonight!!! Let us know what they are, ok?

: : Ya, I love shell fish too and one of my favorite "comfort" dishes was salteen crackers crumbled up in a bowl of milk. :-(

: : Since you have Hashimoto's staying away from too much iodine will be very important as it seems to effect those of us with the autoimmune thyroid disorders of Hashi's and Grave's more than it does those with other thyroid disorders. Our TSH fluctuates more because our autoimmune system is in the process of destroying our thyroids. You can use the non-iodized salt or sea salt but I still haven't come up with anything to solve that craving for Lobster, shrimp and crab! So I cheat on very rare occasions when I know I can be down for a couple of days to pay for it! Luckily my child is grown so I can do that once in a great while.

: : Anyway, you certainly aren't "loosing your mind" just your money, wasted on an arrogant "specialist" that doesn't care enough to keep up with what is going on thyroid researchor or to truely help their patients! Problem is.. there are too many of them out there just like him. But there is hope now! There are many of us out there who have been discarded for too long and also thought we were "losing our minds", thanks to the internet we are finding each other and are now fighting back by passing along as much information as possible to others with this disease that are not helped by the "one magic pill a day".

: : Looking forward to hearing your test result, Sincerely, Tina

: Here are my test results from 2/99 to present:

: Date TSH
: 2/16/1999 .2
: 5/17 13.22
: 6/2 4.31
: 1/12/2000 9.62 while pregnant
: 2/9 11.03
: 2/23 4.34
: 3/15 .31 After baby was born
: 4/18 .12
: 5/10 6.42
: 6/21 11.97
: 7/27 .52

: From what I can see, the only test that has been run is the TSH since 2/16 when my thyroxine was 9.0, TSH was .2 uptake was .92, and free throxine index was 10.0. Right now I am still learning what all this means expecially the free throxine. It looks pretty messy right now.

: Any input would be greatly appreciated.

: I'll check back later.

: Thanks again,

:
: Deb :-)

Hi Deb,

Well, you have been all over the range haven't you? I've heard that fluctuations occur during pregnancy but this seems a bit much. You been hyper or over medicated 3 times in the last year and a half! Can you show the doses that you were on for each reading?
I presume that they have changed your dose quite often, have they?

Thyroxine is T4 which is the synthetic hormone that you take in your Snythroid. Free Thyroxine would be the unbound (usable) T4 hormone in your blood. Since those readings are from such a long time ago they really aren't helpful now, but to see the "typical Normal ranges go to. http://www.endocrineweb.com/TFT.html

The tests I would ask your Family Doctor to run now would be another TSH, Free T4 (thyroxine), and Free T3 (Triiodothyronine) T3 is the active thyroid hormone that is used by your tissues and organs, some of us don't create enough of it from our synthetic T4 only hormone (most of our T3 is created outside the thyroid by T4). Ask your Doctor about the antibody tests that were done to confirm the Hashi's, how long ago and what they were.

What that Endo that you saw needs is to go on to an antithyroid drug like Tapazol for a month and then be switched to Snythroid for a month, keep altering them on a month to month basis for a year to let him experience what you have been going through then tell him he just depressed and load him down on effeoxer, paxil, and throw in some stimulants for the Chronic Fatigue! LOL. Bring in a box of Kleenex for him, he'll need it!

Let me know about the dose changes, ok? Tina





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