rT3 lab update

[artfemme]

Whoo Boy ! Boy are my labs weird now. Please comment. Found endo who apparently is willing to prescribe ONLY T3 if necessary and deals with rT3 problems according to his office staff. I got the name from someone in Kansas who knows someone he treats. He is described as "conservative" in prescribing T3, but at least he WILL. I am hoping to go back on some T4 if the rT3 situation is resolved.

I requested rT3 testing because I had non-pitting edema and weight gain that was getting worse and also started getting muscle spasms in my feet. I'd be lying on the couch and all of a sudden my toes started bending in all different directions. And I thought I was having gastric symptoms and I started feeling both depressed and anxious and having trouble sleeping through the night. The weight has been an ongoing problem, but I hadn't had the other problems since the beginning on 2009 when I went on combination T4/T3 medications.

After getting the labs back in September, I immediately stopped taking T4. I left the Cytomel dose alone (I tried splitting it into 2 doses, didn't work, so continued to take it all at once in the morning) and gradually supplemented with generic T3 I had according to how I felt. After stopping T4, I almost immediately experienced a return of tinnitus, which has only grown worse and wakes me up. I can pretty much use the increase in the volume of the ringing as a guide to take more medication. After about 15 minutes, the volume decreases but does not desist. I find I need to take more meds about 4 hours after the previous dose. I am being very conservative since I am dosing myself, and feel under-medicated. However, the foot spasms seem to have stopped, or at least mostly.
Currently I am taking 30 mcg Cytomel on rising in a.m. NO speedy rush at all. Then taking an additional 10 mcg between 2-3 pm and another 10 mcg around 7 pm. If my ears are ringing too badly and I feel to anxious, I take another 5 mcg around bedtime. Mostly I have been sleeping better than in the 2 months before I stopped T4.

September 25, 2012
150 mcg generic T4  30 mcg Cytomel Fasting
Did not test TSH because it has been below normal since I went on T3 and was low normal before I was medicated

FREE T4 direct                 2.0           (.8 - 2.7)
FREE T3                          3.9           (2.3 - 4.2)
rT3                                   39 HIGH    (11 - 32)
rT3 ratio  : 10 should be 20 or above


October 31, 2012
ZERO T4 since last draw  50 - 55 mcg T3, but none taken for over 24 hours before the blood draw

TSH                                .02 LOW      (.40 - 4.50)
FREE T4 direct                .4   LOW      (.8 - 2.7)
FREE T3                          2.4              (2.3 - 4.2)
rT3                                   9    LOW      (11 - 32)
rT3 ratio : 26.6                    
Ferritin                             115               (20 - 288)


NOW what ?  Did not expect the rT3 to fall so quickly. I feel really weird and abdomen is very swollen and head itching, which usually happens prior to hair starting to fall out again. Rash (3 kinds, from the way it looks) is worse. Dermatologists says "lichen planus type with histiocytes and lymphocytes" (associated w/ hypo)but that was for only ONE of the kinds. However, I currently have normal looking feet and ankles, as oposed to those red marshmallow things I had before I stopped the T4.

Thanks so much for your attention.

Any comments or advice appreciated.          

[gimel]

Just wondered how you are feeling and whether the new Endo was a good prospect or not.

[artfemme]

Yes I know, but also keep in mind that I have eliminated 150 mcg of T4, that I usually take 30 mcg Cytomel, and that the rT3 is partially blocking the receptors. So my usual dose of hormones would be 150 mcg (T4) + 30X4 mcg (T3) =120 mcg EQUALS 270 mcg total. So what I am taking now is not that much more. And you can tell from my last labs that I'm hypo on what I am taking now. Grrrrrrrrrrrrrrr.

From the all the reading I've done about it, from talking to someone without a thyroid who got rT3 AFTER the operation and can't take T4 at all, and from a phone consult with a naturopath who deals with rT3, I apparently have to dose myself enough to keep the hypo symptoms at a reasonable distance (did I mention how wretched I am ?) but be aware enough to knock it back at the first sign of hyper symptoms, which means the rT3 has cleared. Scary stuff, but the naturopath said he couldn't tell me to do anything that I wasn't doing already, as sustained release T3 is not called for in this situation. I am told that a person on T3 ONLY medication usually takes 75 - 125 mcg as a maintenance dose, split up 4 times during the day. (This is a complete pain in the butt, mind you.)

I am seeing a new endo right after Thanksgiving, who has been recommended to me as someone who is comfortable prescribing T3 and has experience with rT3. Hope so, because it's a drive to get to him. I look 8 months pregnant again, darn it.

Thanks for being concerned, Goolarra. I am too. XO.

[goolarra]

Bear in mind that 75 mcg of T3 is roughly equivalent to 300+ mcg of T4.  So, you're way over the 150 mcg of T4 you eliminated.  I'd be very, very cautious.

[artfemme]

Update :

Gradually increased T3 dosage to 75 mcg. Probably still not enough given that I've eliminated 150 mcg of T4 but afraid to go higher without supervision. Torso very swollen, face a little bit too. I don't have a scale, but cannot fit in any clothes. At least my feet and ankles remain not as swollen and no more foot cramps. Skin is very very dry, eyes dry too. Worst is tinnitus and blood pressure has gone from 116/ 70 - 120/72 all the way up to 147/81. This is very scary as my blood pressure before I became ill was always around 116/70 or 68, but after I started to have symptoms and before I was medicated with T3 AND T4, it went all the way up to 196/98. Hope I don't stroke out before I get into the endo right after Thanksgiving.

[artfemme]

Thanks. I understand the concept, just wish I knew how to judge how much T3 to take. Only taking 50-55 mcg so far. V. uncomfortable w distended and hard upper abdomen and seeming rapid weight gain. Tinnitus just woke me up out of sound sleep so came to check here. Noticed shortness of breath when went for walk, and tightness in chest today.

Am on so much less total hormone and since there is a range for rT3, do not understand if I am supposed to eventually have NO rT3 in eveidence. Understand you do not know either.

From the new labs, aside from the rT3 issue, I don't see how any endo could have said I didn't have a thyroid problem or could say so now with a low FREE T4 like that and low FREE T3 too, considering I was taking the med. Don't know how long it takes to clear T3 completely from system, but I was off of it for 32 hours. TSH is about what it always is when I test it, which is why I don't anymore, but would have thought it might be higher. Anyway, would think those last labs would be pretty close to baseline for me in terms of my general condition.

Fairly wretched. Thanks again for the support.

I will go to group you found....I have searched and searched for more information and upset doctor will not see me sooner.

[gimel]

As you know so well, RT3 dominance is a low frequency problem among thyroid patients.  There is not a lot of good info around, either.  The primary form of treatment for high levels of RT3 like yours seems to be T3 meds only, as you are already doing.  As I have gone through all the info on RT3 that I had previously saved, I found this link that is based on info from a group that has suffered from RT3 dominance.  

http://thyroid-rt3.com/

In the section on "How It Is Treated", I found this info.  Please note the info about clearing the receptors, even after T4 and RT3 levels are very low.

"The basic treatment is to stop all meds containing T4 and start T3 instead, The dose of this is slowly increased week by week as the T4 levels in your body diminish. After 6 weeks or so the T4 and RT3 levels in your blood will be very low. You need to keep going longer than this though as it takes around 12 weeks for the RT3 to clear the receptors as well.

During this time you may not be able to take enough T3 to fully clear hypo symptoms though some people may feel pretty well at this stage. It all depends on how hypo you were, how high the T3 and RT3 levels were, and your iron and adrenal status. We do not recommend going above 125 of T3 during this clearing process, there is no improvement in clearance achieved with a larger dose, provided there is enough to suppress TSH and stop T4 production then clearance will occur.  (updated 10/10)

If the  T3  you are taking does clear most hypo symptoms and you had high in range or over range RT3 levels then be prepared to drop the amount of T3 you are taking when resistance clears. This can be dramatic and you can end up needing half what you needed the day before when the resistance clears. This is one of the reasons that you need to go by symptoms and pulse/temperature, things happen too fast to base it all on lab numbers.  (updated 10/10)"

[artfemme]

I have never blocked anybody on purpose and have hardly ever had a PM either, except from you and a couple from goolara. How do I check ? I will go to my account and see if I can figure it out on my own, but doubt it. I have been having trouble with my account in that in Updates, I get multiple notifications of the same post, even my own comments on my own posts. Have been getting 4 updates of the same post for months and have asked admin over and over and over again to please fix it. I just got 2 notices of your comment, so obviously it's not fixed. I wonder if they did something code-wise between our accounts by mistake. So annoying. I don't mind discussing here on the open page if we have to.

Thanks !

[gimel]

I can't seem to send you a PM either.  Please check and see if you have me blocked.  

[artfemme]

I have been unable to send you a private message, I am unable to get the scrambled code to go through even though I have entered it correctly over and over again. Some kind of code glitch, I guess. Hope you will have feedback.