Sorry this is long but I need help

[Jodileanne]

My mother has Hashimoto’s and has had a complete thyroidectomy.
She had several nodules on her thyroid and had an adenoma on her parathyroid.  
I was tested for the antibodies and found out that I have Hashimoto’s Thyroiditis.
Then I had an ultrasound and learned that my thyroid is enlarged and the surface is no longer smooth.
I was getting ready to start treatment for Hepatitis C.
My doctor told me that I would need to have lab work done regularly to monitor my thyroid function while on treatment.  
07/2/2009 TSH 0.98       08/24/2009 TSH 0.76    04/20/2010 TSH 0.43   (one month before treatment)    
05/16/2010 (started Interferon, Ribavirin)   06/14/2010 TSH 3.23 (one month after I started treatment)
09/06/2010 TSH 6.13 (Started thyroid medication)   11/01/2010 TSH 10.00 (Treatment ended.)          
My doctor said that I would probably always have to take thyroid meds. Due to the treatment my thyroid was no longer working and because I have Hashimoto’s it would likely not recover.                    This seemed to be the case as I had my labs done regularly over the next year.  I continued to take thyroid medication.  112mcg Daily Levelthyrox
My (TSH  1.46) (Free T4 1.37) on 02/27/2012 my doctor said that I no longer needed to have labs done so often and to watch for all the symptoms and any sign of problems and  if everything seemed okay then have my labs done again in a year.  
One year later 02/25/2013 (TSH <0.01)  (Free T4 1.8) My doctor had me start taking 112mcg 4 days a week and only half a pill three days a week.  Labs done again 03/27/2013 TSH <0.01 Free T4 1.5    
Changed my dose to only half a pill daily 88mcg. One month later  04/24/2013 TSH <0.01 free T4 1.5    My Doctor said to stop taking my thyroid meds all together. Two weeks off med  TSH 0.02 Free T4  1.2
Now one month off med  05/23/2013 TSH 0.04 Free T4 0.09  Got email from my doctor asking me to go to the lab today and have a free T3 test  and also be tested for the antibodies for Graves.  
I guess I thought that when I reduced the amount of medication I was taking that my numbers would reflect the change. Then when I stopped taking it all together and had labs done a month later I really expected that there would be a change in the right direction. What is happening to me? I don’t feel well at all. I really don’t understand all of this any input would be appreciated.  

[pooh55811]

As you know, you already had thyroid problems going into treatment. Treatment can exacerbate thyroid problems. Yours is a very complicated situation with many factors to be taken into consideration.

We are not doctors here and I really think you need a competent and experienced doctor to manage your care. You do not say what type of doctor you are seeing. If you are seeing a family practice doctor or a general practice doctor, then I would highly suggest that you change doctors for your thyroid problems and make an appointment to see an experienced and competent endocrinologist. You live near San Diego. If I was you I would try to get an appointment with an endocrinologist at the Univ. of California San Diego.

http://health.ucsd.edu/Pages/default.aspx

http://health.ucsd.edu/request_appt/Pages/default.aspx

Request an Appointment

Whether you’re looking for a primary care physician (PCP), need a specialist for treatment or are seeking a second opinion, you can make an appointment by selecting one of the methods below.

New Patients (Patients who have never seen a UC San Diego Health System provider)

To register as a new patient and schedule an appointment, call 800-926-8273, Monday to Friday, 8 a.m. to 4:30 p.m. or fill out our online new patient appointment request form.

Find a Doctor

    Use our online physician search to find a physician by name or to identify a specialist
    View UC San Diego Health System locations and telephone phone numbers


If you go to their website there are many options you can choose, including finding a doctor by specialty.


http://doctors.ucsd.edu/?index=1&specialties=14


Contact

Choe, Charles H.
Endocrinology, Diabetes & Metabolism
Multi-Specialty Clinic
8899 University Center Lane
San Diego, CA  92122

Dillmann, Wolfgang
Endocrinology, Diabetes & Metabolism
Perlman Medical Offices
9350 Campus Point Drive
La Jolla, CA  92037

Edelman, Steven Victor
Endocrinology, Diabetes & Metabolism
Perlman Medical Offices
9350 Campus Point Drive
La Jolla, CA  92037

Herbst, Karen L
Endocrinology, Diabetes & Metabolism
Hillcrest - Medical Offices South
4168 Front Street
San Diego, CA  92103

Hofflich, Heather L.
Primary Care
Internal Medicine
Endocrinology, Diabetes & Metabolism
Internal Medicine
8939 Villa La Jolla Drive
Suite 110
La Jolla, CA  92037

Hostetler, Karl
Endocrinology, Diabetes & Metabolism
Multi-Specialty Clinic
8899 University Center Lane
San Diego, CA  92122

Hupfeld, Christopher J.
Endocrinology, Diabetes & Metabolism
Multi-Specialty Clinic - Garden View
1200 Garden View Road
Encinitas, CA  92024
and
Hillcrest - Medical Offices South
4168 Front Street
San Diego, CA  92103
  
Kado, Deborah
Endocrinology, Diabetes & Metabolism
UC San Diego Medical Center
200 West Arbor Drive
San Diego, CA  92103
and
Multi-Specialty Clinic
8899 University Center Lane
San Diego, CA  92122

Oh, Deborah
Endocrinology, Diabetes & Metabolism
UC San Diego Medical Center
200 West Arbor Drive
San Diego, CA  92103
and
Hillcrest - Medical Offices South
4168 Front Street
San Diego, CA  92103
and
Multi-Specialty Clinic
8899 University Center Lane
San Diego, CA  92122

To register as a new patient (for any of these doctors) and schedule an appointment, call 800-926-8273, Monday to Friday, 8 a.m. to 4:30 p.m. or fill out our online new patient appointment request form.

If you go to the web site and the Endocrinologist page, you can get more information on each physician:

http://doctors.ucsd.edu/?index=1&specialties=14


Wishing you the best. By the way, did you attain SVR (cure) from Hep C?

[ceanothus]

Hi Jodi,
I didn't respond earlier because I don't know anything about thyroid problems, but I did want you to know there are people who care even if they can't help. Pooh has given you excellent advise, and I hope you will find a doctor who can do a better job at not only figuring it all out but also explaining it clearly to you. You might also want to check out the forum here that is for thyroid problems – perhaps they can help clarify whatever you learn from your doctor. Good luck!

[dontworry_behappy1]

Medhelp's Thyroid Disorder forum is excellent.  The members on the Thyroid Disorder forum provided me with exceptionally knowledgeable answers.
Even though you have had Hepatitis C - your issues are with your thyroid.
I would post your question in the Thyroid Disorder forum.

Best to You

[Idyllic]

Wow you cleared the virus in 2010. That is excellent news and very encouraging :)

I am not seeing much connection with Hepatitis C - other than like Pooh said maybe the meds were hard on you. On the other hand apparently you have a family history of thyroid problems so there is that. It sounds like your doctor may have thought you were in remission for a while there. Plus it is possible you are Euthyroid.

Either way you might want to ask your regular doctor for a referral to a good Endo so you can understand what if anything is happening and what your options are.

___________________

When it became apparent my thyroid was messed up and my TSH could only be managed with levothroxine I started learning about Hypothyroid. Then other things happened I had to have several other tests and I did not understand what any of them met let alone the results.

Here are a few things that helped me get started:

http://www.medhelp.org/posts/Thyroid-Disorders/Thyroid-results---please-help-me-understand/show/1749407

http://www.medhelp.org/posts/Thyroid-Disorders/Hashimoto-or-Graves/show/1825896

http://www.medhelp.org/posts/Thyroid-Disorders/What-do-raised-TPO-Thyroid-Antibodies--normal-TSH-mean/show/1365082

And this article:
http://healhashimotos.tumblr.com/post/25393840500/what-thyroid-panel-to-request-from-your-practitioner

[goolarra]

Let me first verify that after a month off meds your FT4 was 0.09 or 0.9?  What's the reference range on your FT4?  Ranges vary lab to lab, so you have to report range with result.

[goolarra]

I should also have asked you to please list your symptoms.

[Jodileanne]

Thank You so much. I love medhelp.org

[Jodileanne]

My T4 0.9  the normal range is 0.8-1.5
My t3 just came back 113 normal range 58-159
My TSH 0.04 normal range 0.35-4.00

[goolarra]

And please list your symptoms.

[goolarra]

Let me start from the beginning, and if I'm telling you what you already know, I apologize.

TSH is a pituitary hormone.  It is the messenger the pituitary sends to the thyroid to tell it to produce T3 and T4 (mostly).  TSH, in and of itself, causes NO symptoms.  It is only when high TSH reflects low T3 and T4 (and vice versa) that it can be used as a proxy for thyroid hormones.

FT3 and FT4 are much more important indicators.  TSH is a couple of steps removed from the actual thyroid hormones, so if TSH doesn't agree with the others, it's the one that has to be ignored.  Your doctor is doing just the opposite, which is not unusual because doctors were taught in med school that TSH was the gold standard in thyroid testing.  It's not, but the medical community is very slow to change.  

Any number of factors can affect TSH and make it useless.  Any disturbance in the thyroid/hypothalamus/pituitay feedback cycle can cause TSH to be off.

Your TSH is no longer tracking your FT4.  It's been below 0.1 since 2/25 while your FT4 was anything from 0.9-1.8.  Why?  We don't know yet.  Once on meds, some people see their TSH go to close to zero, never to bounce back up.  Graves' is another possibility.

"I guess I thought that when I reduced the amount of medication I was taking that my numbers would reflect the change. Then when I stopped taking it all together and had labs done a month later I really expected that there would be a change in the right direction. What is happening to me?"

Your FT4 did exactly what one would expect it to do when you reduced, then discontinued your meds.  Your FT4 started at 1.8, went to 1.5 after a reduction, then to 1.2 two weeks off meds and finally hit 0.9 after a month off meds.  It takes meds 4-6 weeks to leave your system entirely, so you may not have seen bottom yet.  0.9 is very low in the range, and despite your TSH, you are hypo.

Unfortunately, your doctor ordered total T3 rather than the much more useful free T3.  Right now, considering your very low FT4, it doesn't look too bad, but it's total and not free.

I'm only responding right now to your initial post and not anything that you've already been told in the rest of the thread that came from the other forum.

I'll have more to say when you list your symptoms.

  

[Jodileanne]

Thank you so much the links are helpful

[Red_Star]

Just wanted to point out that the heal hashimotos article has a small error.

Thyroid Peroxidase (Antibodies) normal is >35.

That should be under < 35. We don't like antibodies over the range indeed we don't! :)  

[Jodileanne]

Before my Endo told me to stop taking my med. I was having chest pain and shortness of breath. Over all I felt like I was coming down with some thing. Never felt rested though I was sleeping. I am no longer having chest pain now that I have been off the thyroid med. But I still feel worn out all the time. I am very thirsty and I drink gallons of water a day. I crave ice and feel dehydrated most all of the time. I get up to urinate through out the night a lot. I have a hard time focusing on my thoughts. I have not lost or gained any weight. I had a normal T3 test that came in yesterday. But T4 and TSH are off.

[Red_Star]

Craving and chewing ice (pagophagia) is a well noted symptom of iron deficiency anaemia.

[Jodileanne]

WOW thank you so much. I have never really been able to understand this but the way that you explained it was so easy to understand. It makes sense.

[Jodileanne]

Thank you for the info. I have a Endo that I see but may be looking for a new one. I was just tested again for Hep C and its gone!! Im so happy about that. Are you going through treatment?

[goolarra]

I suspect that the chest pain and shortness of breath indicated that you were still a little overmedicated at the time (I believe your FT4 was 1.5, which is still a little on the high side for most people).  You probably needed a further reduction, but discontinuing was, in retrospect, a poor decision on your doctor's part.  Your FT4 is very low now, an indication that your thyroid cannot produce much on its own.

Just to tie in Red_Star's comment...adequate iron and ferritin levels are necessary to metabolize thyroid hormones properly.  You probably want iron and ferritin levels checked.

If you decide to shop for a new doctor, you might want to pre-interview them over the phone before making an appointment.  A few pertinent questions can weed out the worst of the worst.  You'll probably have to speak with a nurse.  If you ask about their reliance on TSH as a diagnostic, what meds they're open to using and whether or not they treat clinically, based on symptoms, you can eliminate the really bad ones as possibilities.  Too many endos, as illustrated in the post above, are only really interested in "Diabetes and Metabolism" and are not good thyroid doctors.  

Did your doctor test TSI as he said he was going to?

[Jodileanne]

My test came back and my endo doctor told me that I do have graves.
The options that she presented me with were 1) anti thyroid drugs.
2) Radiation to kill the thyroid gland. 3) removal

[goolarra]

Please post your FT3 and TSI results with reference ranges.  Did she test FT4 again as well?  Please post all the thyroid tests you have.

Of course, I haven't seen your FT3 at this point, but your current FT4 doesn't seem to indicate the need for any of those (at the moment).  You also have Hashi's, which seems to be dominant right now.    

[Jodileanne]

I am going to have a iodine scan on my thyroid on Tue. and Wen.
I had my parathyroid gland tested this morning also a calcium test.
My calcium test came back at the highest normal range last week.
it was 10.0 and the highest normal is 10.7  My Endo called in labs for the 06/09/2013 Then I will know about the F4 and FT3

[goolarra]

I'm glad she's ordering more tests.  I hope she knows how to interpret them.  It makes me nervous that she's even talking about anti-thyroid meds (ATMs) with your FT4 at only 0.9.  FT3 will shed a lot more light.  

Keep us posted...

[Jodileanne]

I know... I sent her a message and asked her what is the difference between the t3 and the FT3 and why she elected to only test my t3 ?? and only then did she add it to my lab order. However I do feel better now that I am having the scan next week.

[Jodileanne]

When my Endo spoke with me about my options she gave me some paperwork on the radiation therapy and also sent a referral to nuclear med lab at the hospital just in case I chose to have that done.
I don't see how killing my thyroid is going to solve my problems.
Keep in mind that I am aware of the fact that I don't understand this whole thing. Now that I know I have Hashimoto's and Graves antibodies attacking my thyroid I am concerned about eventual thyroid cancer.  

[Jodileanne]

I am not really sure why I am associating the antibodies with cancer.
I think its because I know that they damage the surface of the thyroid and cause your cells to change and the inflammation and all... I don't know.