It turns out it was too much Reverse T3 all this time!

Hi all. Sorry I haven't been here in forever. I've been dealing with my health issues and have been simply too weak to be on the computer much.

Quick recap: I started getting sick in the spring of 2009. At the time I believed it was low cortisol. I went to my doctor, who put me on hydrocortisone. Three weeks later, my insurance dropped my doctor, and I spent the better part of a year trying to find a decent replacement. During this time, I was taking way-too-high doses of hydrocortisone; I didn't have a doctor and I was having to make my own medical decisions. I was making some crappy medical decisions. 

The hydrocortisone interfered with my calcium absorption, which, combined with my gastric bypass malabsorption, caused my teeth to rot and break off. I spent about a year and a half (and thousands of dollars) getting root canals and crowns only to have the root canals fail. 

In addition, during the past three years, all my thyroid blood tests kept coming back abnormal. I tried different meds and different doses, but nothing helped. I didn't really pursue the problem during this time, I was too busy with my dental emergencies (abscesses) and trying to wean off the steroid. You can only fight so many fires at once, right?

I've managed to solve some of my health issues. I broke down and had my rotten teeth pulled. I wear dentures now. It sucks, but it's better than being sick all the time. I'm off the steroid and have been for more than a year. But I wasn't able to get the thyroid problem resolved. 

I did some research on the Internet and discovered a couple of important things. One, Armour changed its formula and began adding cellulose to the mix. It seems the cellulose binds to the thyroid hormone making it difficult to be absorbed. I've been reading many, many accounts of people who saw their hypothyroid symptoms return after Armour's formula change. When did Armour change its formula? Spring of 2009! When I first got sick! Coincidence? I don't think so! Oh, and Armour didn't bother telling anyone about this change. Nice of them, huh?

I also learned of Reverse T3, but I'll get to that in a minute. 

After thinking of this, I believe what happened was that Armour changed its formula in 2009, I couldn't absorb it and began having symptoms of both low thyroid and low cortisol. I say low cortisol because the body needs cortisol to help utilize thyroid properly. If you aren't getting enough thyroid, the adrenals will try to compensate, and that can lead to low cortisol symptoms. I really believe that was the case with me, though I'll never know for sure. I also believe some of my symptoms at the time were low thyroid, as I've already mentioned, but I didn't recognize these symptoms for what they were. Why should I suspect low thyroid symptoms? After all, I was on Armour, the miracle drug! 

As stated, I learned of the existence of Reverse T3. When the body converts T4 (a storage hormone) to T3 (the biologically active hormone) some Reverse T3 is made. This is normal. Sometimes, however, the body can make too much Reverse T3. This can happen, for example, when a person has had long-term exposure to infection (my rotting teeth), and to high levels of cortisol (the two years I spent on hydrocortisone). The body responds these types of stressers by increasing Reverse T3 and thus decreasing energy production. Why? I don't know. Everything I've read says the body thinks it needs to conserve energy to deal with the stress. Seems counterproductive to me. Basically what happens is that the excess Reverse T3 binds to the cells so that T3 can't get to them. You can have plenty of T4 and T3 in your bloodstream, but if it isn't getting to your cells, you're screwed. 

I went to my doctor, who is an osteopath, and who thankfully just happened to do his thesis or dissertation or whatever on this very problem. Here's a link if you want to learn more: www.wilsonssyndrome.com/ I had a blood test, which confirmed my suspicion, and started treatment at the beginning of this year. It's not been easy. You have to do these cycles where you take increasing doses of T3 only (taking T4 only leads to more Reverse T3) for a period of time, then wean off in preparation of a new cycle, all the while keeping careful track of your body temperature. The goal is to force the body to clear out the excess Reverse T3. I've done three cycles and I think I'm finished. I'll know more tomorrow when I see my doctor again. 

If I am finished I can't go back on Armour. Armour is ruined now. So is Naturethroid and Westhroid. They both have cellulose in their formula as well. I can't do compounded, my local compounding pharmacy uses cellulose too. And Synthroid has never, ever, ever done a single damned thing for me. Ever.

One option is a compounded formula made in Canada, that is exactly the same formula as the old Armour. The problem is that Canada has a different health care system than ours, and the pharmacy that makes this medicine doesn't accept insurance. It's out-of-pocket and can be pricey.

That leaves NP Thyroid, made by Acella Pharmaceuticals. Thankfully Acella is in the US, insurance covers NP Thyroid, and it's considered a generic of Armour so it's inexpensive. It's almost exactly the same formula as the old Armour. It has one more type of dextrose than the old Armour. Obviously NP Thyroid is what I'm going with. 

Once I get my thyroid — and my general health —  where it should be, I can then begin focusing more on getting a revision. And going back to school!!!

I'll be so glad when this is all behind me. I've learned a lot from this experience, and it's made me appreciate life so much more, but I never, EVER, want to go through this again!

Thanks for listening,

Lynda

Edit: Forgot to mention this. Does anyone remember when I had laparoscopic surgery because of a possible internal hernia? And nothing was found? Well, that was because of my Reverse T3 problem as well. Basically I was hypothyroid, and I was on a bunch of narcotic medicine because of my rotting teeth, and between the two, I had severe constipation that was so bad it seemed like some sort of blockage was going on. It was a functional blockage rather than a mechanical one, you might say. If that makes any sense. 

Just thought I'd share and update. 






  

Thank you for posting this.  We have to be our own advocates, and armed with information such as this, it sure helps.

Lets hope that you can turn the corner and get back to tip top shape.  :)

 Sometimes I get real irked at the fact that I have to be my own advocate. It's not being a self advocate that bothers me, it's the level of self advocacy that I have to do at times. Sometimes it feels like I'm doing the doctor's job and it's annoying. But, in the end, it's my health that matters, and if I have to do the doctor's job, so be it. 

 Like said above, thanks for posting. These personal experiences will help others!  

I have hypothyroidism, but Synthroid has always worked for me. It is the only med my dr recommends, so I wad surprised to see that it didnt work for you.  I am only 5 months out, though, so lots can happen. 

Sorry you have had such a rough time. I hope things stay under control and this can all be put behind you. 

 I think my body has trouble converting T4 to T3, so the dessicated-type of thyroid is what worked. And Armour was amazing. WAS amazing. Isn't anymore. I'm just glad there is another med that's just like the old Armour. Don't know what I'd do if Synthroid were my only choice. 

You would have to fix the underlying problem that's causing the conversion issue. T4-T3 conversion is controlled by deiodinase enzymes and occurs primarily in the liver.  Things that can impair conversion include 'starvation' (i.e., calorie deficit),  stress on the liver, steroids like prednisone, iron or other vitamin/mineral deficiencies, and illness.  It's generally not a 'chronic' condition in and of itself.  It's sometimes referred to as "Euythroid Sick Syndrome,' and if you remove the underlying problems it should resolve.  I just went through it after getting Tonsilitis over the holidays.   

I take levoxyl (generic synthroid), only, and I re-started my T4-T3 conversion by  upping my calories from 800-900 a day  to 1500-1600 a day, going on a significant iron supplement, reducing T4 dose, and getting more sleep.  Low iron impairs conversion which pushes up T4 levels which impairs iron absorption and it became a vicious cycle.  The body produces rT3 as a response to excess thyroxine which is not being cleared as fT3.

It sounds counter-intuitive, but while eating more and taking less thyroid hormone I not only got and felt better, I continued to lose body fat and weight. 

Wow what a long and complicated road.  Congratulations to you for sticking with it and following the leads to find the solution.  I hope this is the end of the problem and that the road ahead is nothing but roses.

Best of luck to you and thanks for posting this.

Challie

 Roses are good, Challie. I love roses...so do aphids...which is why I no longer grow roses. :P

 
Lynda,

HUGS!!!!!!!!!!!!!

After this long & difficult road, you hav found the culprit.  I am happy for that.  Now, just turning the corner is the next thing on your list of To Do's!!!!!!!

Good Luck at your appt. today.



-Jamie

 Thanks all! I am DONE with this whole Reverse T3 treatment. I'm home-free now. Woot!
Now I can move forward with the things I want to do, like my revision, and going back to school to finish my degree sometime before I die, lol. 

Jamie, I hope you're doing well, running and jumping and hyper and full of energy, and lookin' great!