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Old 10-06-2012, 04:53 PM   #1
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Thyroid Saga Update!

Hey everyone... and hi especially Sammy I've missed you guys. I had to withdraw for a little and forget for a few weeks about all of this. Needed to get some mental clarity. When my biopsy results came back 8 okay (typical of goiter) 1 atypical to be redone in February, I felt I had a little breathing room. But I met again with my new guy to discuss the biopsy results, and he was STILL saying he didn't want to do antibody tests because the treatment modality would be the same. And he was STILL saying that my thyroid needed to come out regardless of the biopsy, and he was STILL saying that I needed to go on methimazole.

So I kept looking. I found one more doctor - this one listed on the best thyroid doctors website. She doesn't take insurance, so I have to file for that on my own. And she isn't cheap. But she's an integrative medical doctor, an MD and a community fellow at our best public university, and she specializes in adrenal problems.

So I sat down with her and told her the whole story. The first words out of her mouth? "Did they test you for thyroid antibodies?" When I said no, and told her why, she said, "That's stupid. If you have one autoimmune disease, you're more likely to have others. Regardless of what they wanted to do with your thyroid, that's important information to have, and if you don't treat the underlying condition that caused your Graves Disease, if you have that, then you're just going to keep hitting the same brick wall in other ways." She told me NOT to take methimazole, and she switched the Provera I was taking for PCOS every three months to Prometrium. "Provera is poison," she says. "This will be much better for you. And is that all you're taking for your PCOS?" I said yes, that they just asked me if any symptoms bothered me. She said, "What about your increased risk of diabetes, of heart disease? They don't always have symptoms."

Then she ordered the following labs:

ACTH
ANA Profile
Anti-thyroglobulin AB
CBC Differential
Complete Metabolic Profile
Celiac Profile
CRP
DHEA-Sulfate
Ferritin
Hemoglobin A1C
Lipid Profile
Pregnenolone
Selenium
FT3
FT4
TSh
Bioavail Testosterone
Thyroid Perox AB
Vit A
Vit B12
Vit D 25 Hydroxy
24 hr free cortisol (surprised not the saliva, but we'll see)

"I think it's time we started treating you and not just your symptoms," she said. "What do you think?"

I was so relieved that I almost cried.

I am not going to get my hopes too high up, but we are off to a promising start. And it's worth paying out of pocket (labs are in-network at least) and driving 1.5 hours to see her.

To all those who are fighting this god-awful fight of trying to be heard, have faith and keep fighting! I have been so tempted to give up so many times and just give in and have my thyroid removed, but it has been darkest, always, just before the dawn. My hope is renewed. That said, if she comes back after all this and says it has to come out, I'm going to do it. But at least I've found a doctor who supports the use of bio-identical hormones and treating the whole person, not just symptoms. I mean, the new patient form asked questions about my mental state... I have NEVER been asked that kind of thing by any other doctor before. And it's such a simple, important thing!
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Old 10-07-2012, 07:15 PM   #2
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Re: Thyroid Saga Update!

Hello Princesca,

Well i'm glad you found a doctor who has taken the time to hear you out and make an effort to solve not just the illness your dealing with but what is indeed causing the illness. It seems the doctor is covering many aspects of the metabolic areas (which includes the thyroid) for chances of direct correlation for anti bodies. Since antibodies fight specific areas....(like my situation) she can start pointing the finger in specific direction.

I hope you find the answers your looking for!!

Sammy is awesome also, taught me a few things which helped me ask more questions from my doctors.

 
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Old 11-02-2012, 08:14 PM   #3
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Re: Thyroid Saga Update!

Another update... I'm not sure if anyone still reads these, but I'm posting in case someone out there has symptoms like I did, or is struggling with the same things I have. Maybe this will be useful to someone!

I got all my lab results back and am meeting with my integrative doctor on 11/19 for her analysis. But from what I can tell, this is what stands out:

1) I am vitamin D deficient... several points below minimum normal, so I've started taking a supplement - just 1000 IU, but there are already 1000 in my multivitamin, and I didn't want to go overboard before talking to my doc

2) I tested positive for ANA antibodies, but no thyroid antibody tests

3) My ACTH reading was suuuuuper low. Like my body doesn't seem to be manufacturing it at all. Though I've heard the test is fragile, and if it's not handled exactly right, it can go caddywhompus.

4) My pregnenolone was also super low.

5) My cortisone levels were normal.

Based on this, I am wondering if my problems aren't stemming from a pituitary problem. My cousin, the one who (according to my DH) most closely resembles me, was diagnosed with a thyroid problem caused by pituitary issues. The ACTH/pregnenolone is certainly an issue. I also have PCOS, and since pregnenolone converts to progesterone, I think correcting that issue could maybe kill two birds with one stone. Pregnenolone alos converts to cortisol. My cortisol, while normal, could go a little higher, and my understanding is that cortisol has a repressive effect on T4 to T3 conversion. Since my T3s are a little above max normal, a slightly higher cortisol could maybe pay off for me in regulating my subclinical hyperthyroidism. That would be nice!

Anyway... whether or not the hyperthyroid is the root cause or not, I have uncovered other issues in the process that can now be treated. It's staggering that it took 17 years of living with PCOS before I stumbled upon a doctor willing to ask WHY. For what we pay for healthcare in the US, we deserve better than having to live with chronic conditions just because most doctors want only to bother with taking the easy way out and treating the symptoms instead of the root cause.
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