Comments on: Oprah Endorses… the Thyroid

By: Sarah

Sarah — Wed, 24 Oct 2007 22:51:34 +0000

Glad to hear I’m not alone, Kevin! You didn’t happen to develop Addison’s did you? I’m terrified that’s my “next” present…oh well….that’s life!

If it *was* Addison’s, can you list your symptoms and how you were dx? I have all the textbook symptoms and yet my ACTH came back normal. Go figure.

By: Kevin

Kevin — Wed, 24 Oct 2007 16:40:43 +0000

Thanks Sarah for pointing out that Hashimoto’s can be tricky to treat.

After getting the synthroid levels into the normal range, some people, myself included, still don’t feel like leaping tall buildings in a single bound and not all docs are convinced that they need to treat the feeling beyond getting you into the normal range for T3/T4 on your labs.

In my case, I ended up cutting down on synthroid (T4 replacement) and adding Cytomel 2 x /day as a straight T3 replacement. Normally, it is assumed that your body will convert the synthroid into T3 as necessary but that didn’t work for me.

Finally, we got that figured out and labs were good for the most part but I still didn’t feel great although I did feel better.

Only through 3 years of driving for feeling better did we diagnose yet another condition and once we added another hormone replacement therapy I felt like a million bucks.

So, be persistent and if need be, switch endocrinologists as I did. I cringe to think what my life would be like today had I settled for straight synthroid replacement and been convinced by my first endo that I was all better according to my lab results.

As we say in diabetes as well, treat the patient not the numbers.

By: Sarah

Sarah — Wed, 24 Oct 2007 16:29:08 +0000

For the record, Hashimoto’s in some people is NOT easy to treat. Many people with Hashi’s NEVER feel better on thyroid replacement. Many people need specific doses of thyroid hormone that cannot be adjusted daily like insulin. There is no easy daily “fine tuning”.

I know because I am one of them. I’ve had Hashi’s since I was 10. You read that right, 10. Add Type 1 to the mix, Celiac Disease, asmtha, and multiple allergies, and it’s no wonder I feel like crap.

My thyroid levels have been swinging for the past 15(!) years. They never stabilize, and I still make some of my own thyroid hormone from time to time. My TSH has gone from 3.5 to 30 in less than TWO WEEKS.

I felt like a fatigued zombie for years, even though my lab work said I was in “normal range”. But how can anyone know what “normal” thyroid levels are for *me”, before this disease?

I now take a combo of T3/T4 2-3x daily and feel somewhat better, but not 100%.

Thanks for making people aware of the fact that autoimmune thyroid disease is more common in Type 1 diabetics. Autoimmunity….the gift that keeps on giving!

By: Albert

Albert — Wed, 24 Oct 2007 04:52:43 +0000

just like the misconception between type 1 and type 2… and the mislead assumption of the existence of a cure… there’s always a hidden side of reality that the general public will completely miss.

the link to that blog is much appreciated Janie

By: AmyT

AmyT — Tue, 23 Oct 2007 21:36:20 +0000

Thanks for adding your insight at my request, Janie. That’s valuable info for all the folks out there struggling with thyroid problems.

By: Janie

Janie — Tue, 23 Oct 2007 21:31:42 +0000

To the contrary, Oprah has done a HUGE disservice to MILLIONS of thyroid patients, and to this day continues to ignore the REAL story…as well as ignoring at least 2 years of emails from thyroid patients, PLEADING her to tell about the fallacy of T4-only meds and the lousy TSH, and a MUCH better treatment. Go here and read the October 17, 2007 post and weep: http://www.stopthethyroidmadness.com/blog

Oprah lives on another planet!!

By: Rosalind Joffe

Rosalind Joffe — Tue, 23 Oct 2007 21:31:28 +0000

Hooray for Oprah. I worry that the way you (or she) are describing this, it sounds as if it should always be easily treatable. I heard people say that they wish they had Diabetes because it’s at least something that you can “manage” (as compared to other autoimmune diseases. Be careful what you wish for – and be careful not to mnimize living with any chronic disease(although I know you aren’t Amy. I’ve had clients who are completely debilitated with Hashimoto’s disease.

On another note: Hooray Oprah! I’d like to see her talk about how hard it is for women with autoimmune diseases to keep working! Anyone got any connections?

By: Rachel

Rachel — Tue, 23 Oct 2007 13:14:07 +0000

I was very glad to see Oprah speaking out about this. It’s so easy to feel so much better by taking thyroid replacement for hypothyroid…wish that could be the case with more conditions!?!

By: Jolene

Jolene — Tue, 23 Oct 2007 12:57:30 +0000

I remember when I was dealing with getting the right treatment and hanging out on the Thyroid boards on About.com and it was and still is frustrating this women that can move countries couldn’t help our the women suffereing from this condition. I don’t talk about it much now because 2 pills a day and I’m fine, but there are many that aren’t fine out there!