It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Thyroid Disorders Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 08-30-2011, 10:47 AM   #1
Newbie
(female)
 
Join Date: Aug 2011
Location: Raleigh, NC, USA
Posts: 4
DIX081 HB User
New Thyroid patient has questions/needs advice

I was diagnosed with subclinical hypothyroidism with a TSH of 4.55 and was put on 25 mcg of Levoxyl by my GYN. For the first 3 weeks of treatment I felt OK Ė a bit of a queasy stomach but I felt better after I ate something. After 3 Ĺ weeks, I felt nauseous Ė especially a few hours after taking the medication. I also had a persistent headache that was not helped when I took Advil. I felt fatigued and was experiencing some heat intolerance. At night I was experiencing bad hot flashes and sweating.

After being on Levoxyl for 4 weeks I called my MDís office and the nurse told me to keep taking the medication and that their patients tolerate the medication well. I begged her to do something for me so she allowed me to come in and have my TSH and free T4 re-tested. After waiting 10 days for the test results, my TSH came back normal (2.7). My MD told me to take Vitamin B6 and Vitamin B12 to help my nausea. (I was never tested to see if I had a Vitamin B12 deficiency).

After taking the B Vitamins for several days, I kept feeling worse Ė even after dropping down to 12.5 mcg of Levoxyl per day. I talked to my MDís office again to get help. After waiting for 2 days for a response I was told to follow-up with my Primary Care MD. Errrrr!

I sought the opinion of another GYN who felt that I was put on too high of a dose of Levoxyl considering my original TSH value. (She told me to take 12.5 mcg per day) She felt that I may have been over-treated. She recommended that I consult an ENDO.

By the time I saw the ENDO, I felt so horrible that I just couldnít tolerate taking the medication anymore and had a high BP on top of everything else. The ENDO told me that she wasnít sure what happened to me. Was I over-treated, was it a drug side effect, or was my body unable to adjust? My ENDO also told me that the TSH value can lag behind the symptoms, so was my re-tested TSH value at 4 weeks reliable? My antibodies turned out positive; she ruled out a pituitary tumor.

Iím currently not taking any thyroid medication. My ENDO is keeping an eye on my TSH and told me that if she were to medicate me she would go slowly - start me on 12.5 mcg 2 times per week, and she would go by my symptoms. I can tell that she isnít too happy that I dumped my original GYN Ė but I was not happy with the care that I was receiving from him.

I have a few questions that I would like opinions on:

1) Was I started on too high of a dosage based on my original TSH?
2) Was testing my TSH after being medicated 4 weeks too soon?
3) If I were to start treatment again, should I insist on trying a different drug?
4) I felt as if I was over-treated but I think that my ENDO would not say that I became hyperthyroid because my re-tested TSH value at 4 weeks did not reflect it. (BTW, when my TSH was re-tested, a free T4 was not performed. It was supposed to be Ė a Thyroid Panel was performed instead. I think that my GYNís office ordered the wrong test)
5) Could something else be wrong such as low adrenals? (Was never tested for this - Iíve read that conventional medicine does not believe in this)

Itís depressing to discover that thyroid patients arenít treated well; itís frustrating to get decent care because itís all so complicated.

Thanks for any help!

 
The following user gives a hug of support to DIX081:
mkgbrook (08-31-2011)
Sponsors Lightbulb
   
Old 08-31-2011, 11:20 AM   #2
Facilitator
(female)
 
Join Date: Aug 2007
Location: Finland
Posts: 3,248
FinnMaid HB UserFinnMaid HB UserFinnMaid HB UserFinnMaid HB UserFinnMaid HB UserFinnMaid HB UserFinnMaid HB UserFinnMaid HB UserFinnMaid HB UserFinnMaid HB UserFinnMaid HB User
Re: New Thyroid patient has questions/needs advice

Usually people tolerate a starting dose of 25 mcgs well, some start with 50 mcgs and it may work just fine. It is uncommon to start with just 12.5 and it does sound to me that there may be something else going on (possibly adrenal issues - if possible you should look into this before trying thyroid meds again). TSH itself has no direct bearing on the symptoms. Usually labs are checked after 6-8 weeks in order to have everything "settled".

Last edited by FinnMaid; 08-31-2011 at 11:20 AM.

 
The Following User Says Thank You to FinnMaid For This Useful Post:
DIX081 (08-31-2011)
Old 08-31-2011, 01:42 PM   #3
Senior Veteran
(female)
 
Join Date: Aug 2006
Location: Oak Ridge
Posts: 6,749
mkgbrook HB Usermkgbrook HB Usermkgbrook HB Usermkgbrook HB Usermkgbrook HB Usermkgbrook HB Usermkgbrook HB Usermkgbrook HB Usermkgbrook HB Usermkgbrook HB Usermkgbrook HB User
Re: New Thyroid patient has questions/needs advice

I will write more later. You had positive antibodies, I am assuming Hashimoto's. Did they also test your Graves antibodies? 25 mcgs is not a high dose at all normally it is considered a token dose. You are not being monitored properly. I am betting that you are having conversion issues due to some other endocrine system.

What you need is a full proper thyroid panel:
TSH 3rd generatio
FREE T4
FREE T3
TSI and TRAB in addition to the TPOAB AND TGAB for Hashimoto's.

You need to look into your diet. Cut out iodized salt and vitamins with iodine components. Iodine is like tossing gas on a fire with thyroid symptoms as the fire.

Depending on your FT3&4 balance and ratio I may recommend some adrenal tests. The issue with adrenal tests is you need to be off all steroidal supplements for at least two weeks and you need to be off birth control pills or female hormone supplements for a month. If not your results are artificially elevated.

Look up threAds by mkgbrook. There is a whole series of thyroid cares and concerns thread. These are full of information to help you understand what is going on with you system better.

I will try and answer any added questions in more details when I am at my computer versus using my phone. I truly wish you the care you deserve.

MG
__________________
If we learn by our mistakes, I am working on one hell of an education.

Last edited by mkgbrook; 08-31-2011 at 03:40 PM. Reason: fixed a typo

 
The following user gives a hug of support to mkgbrook:
DIX081 (08-31-2011)
The Following User Says Thank You to mkgbrook For This Useful Post:
DIX081 (08-31-2011)
Old 09-02-2011, 09:56 AM   #4
Newbie
(female)
 
Join Date: Aug 2011
Location: Raleigh, NC, USA
Posts: 4
DIX081 HB User
Re: New Thyroid patient has questions/needs advice

My original labs drawn in January were:

TSH- 4.550 (0.450 - 4.50)
T4, Free (Direct) - 1.23 (0.82 - 1.77)

Labs drawn end of February was called a Thyroid Panel w/ TSH. This is when I was experiencing bad hyperthyroid-like symptoms. GYN did not order Free T4 test but this thyroid panel instead.

TSH- 2.710 (0.450 - 4.50)
Thyroxine (T4)- 8.1 (4.5 - 12.0)
T3 Uptake- 34 (24-39)
Free Thyroxine Index 2.8 (1.2 - 4.0)

I'm trying to get a copy of my June labs from the Endo's office. As I recall my TSH was around 6. I don't recall what my Free T4 was. My TPO was in the 100's.

If the Thyroid Panel w/ TSH test results are a reliable indicator at 4 weeks then it is probably fair to say that I have something else going on such as low adrenals that my Endo hasn't even considered. Is the Thyroid panel that was performed useful or possibly more useful in evaluating hyperthyroidism? My concern with my Endo is that she's not doing enough to investigate what happened to me. I don't feel comfortable going on the meds again until she's more thorough and has ruled out things like adrenal issues. In October I'm supposed to have my TSH and Free T4 tested - she's not planning on testing my Free T3. At this point I feel like marking it on the lab sheet myself along with cortisol!

Thanks for any help or advice. It's very appreciated.

 
Old 09-02-2011, 10:57 AM   #5
Senior Veteran
(female)
 
Join Date: Aug 2006
Location: Oak Ridge
Posts: 6,749
mkgbrook HB Usermkgbrook HB Usermkgbrook HB Usermkgbrook HB Usermkgbrook HB Usermkgbrook HB Usermkgbrook HB Usermkgbrook HB Usermkgbrook HB Usermkgbrook HB Usermkgbrook HB User
Re: New Thyroid patient has questions/needs advice

DIX,

Your original labs drawn in January are incomplete. You really needed to know to push for FT3. I wish MDs were more thorough with their care of their patients.

TSH- 4.550 (0.450 - 4.50)
T4, Free (Direct) - 1.23 (0.82 - 1.77)
Your TSH indicates hypoT. Your T4 levels are 43% here normally you need to be farther off to have that high of a TSH. So I suspect your actual T3 values are lower. However we do not know for sure because they did not run the test.

TSH- 2.710 (0.450 - 4.50)
Still hypoT given you are confirmed Hashi's.
Thyroxine (T4)- 8.1 (4.5 - 12.0)
You are at 48% here give or take 20%.
T3 Uptake- 34 (24-39)
you are showing a 66% conversion of T4 into something else. You convert T4 naturally to T3 and RT3. You would need those respective tests to see how well your system is doing this.
Free Thyroxine Index 2.8 (1.2 - 4.0)
This test is cow flop. Not worth looking at...

I'm trying to get a copy of my June labs from the Endo's office. As I recall my TSH was around 6. I don't recall what my Free T4 was. My TPO was in the 100's.

YOU ARE HYPOT AND NEED TREATMENT! YOU ARE PAST THE WAITING STAGE. You need a complete thyroid panel and proper supplementation. If there is still an intolerance to T4 they/you need to look at the adrenal component to thyroid conversion control. Your cortisol production by the adrenalism serves as the thyroid Hoover dam. It controls how much T4 is converted.

If the Thyroid Panel w/ TSH test results are a reliable indicator at 4 weeks then it is probably fair to say that I have something else going on such as low adrenals that my Endo hasn't even considered.

It is fair to say you can not truly know what is going on because you haven't had the proper testing.

Is the Thyroid panel that was performed useful or possibly more useful in evaluating hyperthyroidism?

The OB thyroid panel had a test that is useful in looking at conversion rates but you need FTs with it to make it worth while.

My concern with my Endo is that she's not doing enough to investigate what happened to me. I don't feel comfortable going on the meds again until she's more thorough and has ruled out things like adrenal issues.

You are going to have to take the initiative and bring them lists of tests to run. DO not let them talk you out of them and insist on getting copies of the results.

In October I'm supposed to have my TSH and Free T4 tested - she's not planning on testing my Free T3. At this point I feel like marking it on the lab sheet myself along with cortisol!

Insist that she test it! It is your lab work and your money. You can go to a Walgreen's minute clinic and their FNP can write you the script order. I went through five Endos. They do not treat my issues. I have a knowledgable IM that spear heads my care.

Thanks for any help or advice. It's very appreciated.

Your welcome.
__________________
If we learn by our mistakes, I am working on one hell of an education.

 
The Following User Says Thank You to mkgbrook For This Useful Post:
DIX081 (09-02-2011)
Old 09-02-2011, 02:31 PM   #6
Newbie
(female)
 
Join Date: Aug 2011
Location: Raleigh, NC, USA
Posts: 4
DIX081 HB User
Re: New Thyroid patient has questions/needs advice

My January tests were part of an annual physical - my GYN never told me that he suspected a thyroid problem, but then again I would never have known at the time that he should have tested my free T3 too. I was told by 2 other MDs that my GYN never should have treated me based on those numbers alone and that I should have been re-tested. He turned out to be one of those "oh you have a problem, here's a script, don't question anything" types. When I felt absolutely horrible, and I knew it was some sort of reaction from being on Levoxyl, he thought that Vitamin B12 or menopausal issues were my problem. He couldn't have been more wrong!

At this point I'm not convinced that my Endo is going to order the appropriate tests for me since possible adrenal issues has not even been on her radar. All she's doing for me is periodically testing my TSH and free T4 - not even my free T3. I do agree with your opinion that I have not been adequately tested. My Endo has not treated me partly because I have not been symptomatic enough plus she's afraid of over treating me based on not really knowing what happened to me the last time. The way I look at it, if conventional Endos don't believe in adrenal fatigue then I would be wasting my time with her.

I have found an integrative medicine physician who is interested in treating hypothyroid and adrenal fatigue patients. I'm calling her on Tuesday to make an appointment. I'm not going to start treatment until I know if I have adrenal issues or not. I want to prevent getting REAL sick again.

Thanks so much for your help!

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
New thyroid patient with questions?? Gemsrite Thyroid Disorders 162 09-05-2011 12:37 PM
My wife has thyroid disease..... uchan77 Thyroid Disorders 7 11-18-2008 09:40 AM
thyroid peroxidase and miscarriage fruitloop1024 Thyroid Disorders 14 03-27-2008 10:06 PM
thyroid questions dingoling Thyroid Disorders 6 01-03-2008 08:44 AM
Need advice regarding thyroid nodules. Bad Company Thyroid Disorders 7 07-07-2007 06:26 AM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added




Top 10 Drugs Discussed on this Board.
(Go to DrugTalk.com for complete list)
Armour
Cytomel
Levothroid
Levoxyl
Potassium
  Synthroid
Tapazole
Unithroid
Xanax
Zoloft




TOP THANKED CONTRIBUTORS



sammy64 (668), midwest1 (631), FinnMaid (313), Reece (226), lisa789 (196), Tree Frog (80), mkgbrook (72), cd37 (56), ladybud (47), Bran'sNana (44)

Site Wide Totals

teteri66 (1180), MSJayhawk (1013), Apollo123 (910), Titchou (859), janewhite1 (823), Gabriel (763), ladybud (755), midwest1 (671), sammy64 (668), BlueSkies14 (607)



All times are GMT -7. The time now is 04:54 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!