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rT3 help
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rT3 help

I have been feeling badly for the last several months, gaining weight and with edema. For a few weeks last month, I had spastic toes again, and even the tinnitus came back over the last few days and I haven't had that problem for 2 years. I have been having trouble sleeping and feel like I don't know what to eat and that my stomach is upset after I do. That isn't normal for me at all since I have been on medication. I feel depressed and more than mildly anxious, and am having dyslexic reversal of letters when I type. All of that had gone away. Both Hashimoto's antibody tests have always come back negative.

I felt so much better than I feel now, back when I first went on dual medication in 2009. At that time, I was on 50 mcg Levothyroxine and had every symptom of hypothyroidism possible, but my TSH was low in the normal range, so no endo would treat me until finally they found nodules on both lobes and gave me T4 to try to control them. I ended up in the hospital after a panic attack lasted for 4 days, and with severe depression , resistant to all antidepressant meds. I lost half my hair and eyebrows, gained 40 lbs., looked like I was 8 months pregnant with bloating, high cholesterol and blood pressure, hoarse voice etc. etc.

Finally I begged my PCP to give me Cytomel. I knew nothing about dosage at the time, so when she gave me 25 mcg in addition to the 50 mcg T4 I was already on, I didn't question it. In 5 days, I felt more depression or panic attacks after just 5 days on meds, and in 3 weeks dropped 15 lbs, and another 5 gradually over the next month or so. No hyper symptoms at all.

I tried to go on Armour, to very bad effect, which led to my PCP sending me back to endos who screwed with my meds over and over again, saying I didn't need them. Of course I had return of symptoms and was miserable. Finally my doctor let me just start testing my FREEs and not worrying about my TSH, and the FREE levels are up in the range where most feel good. I felt better than when I was under treatment by endos, but never as good as I felt initially on 50 mcg levothyroxine and 25 mcg Cytomel. Because I was in a good area of both ranges, my PCP wanted me to stay at the dose I am on now for 6 months before testing again. That was in the beginning of May. But I have just been feeling swollen and worse, and even have several types of rash, one of which looks like mucinosis and the other little blistery bumps. It became so extreme that a dermatologist took a biopsy on the 20th and I'm awaiting the results of the inflammation. But the good news is that my hair stopped falling out and the spooning in my fingernails is almost gone, and they are strong and growing again.

Anyway, from the way I'm feeling, I suspected rT3 and went and had labs drawn. I just got them back today and am confused how to interpret them or how to proceed, because the FREE tests seem fine, but the rT3 is high in the range.. My PCP isn't going to know anything about it. She mostly just does what I ask her to do. Here are my results. I welcome any help. Is it possible that I am one of those people that ONLY needs T3 ? I'm so tempted to go back to that original dose, but think I shouldn't just do it all at once. And I'm sure my doc isn't going to let me go on the high doses of T3 to clear rT4, with monitoring. But she might, if I can persuade her with science. Thank you so much.

150 mcg levothyroxine  30 mcg Cytomel
Estradiol and Progesterone, labs drawn on last day of cycle before stopping both for 5 days

FREE T4 direct            2.0       (.8 - 2.7)
FREE T3                     3.9       (2.4 - 4.2)
rT3                              39        (11 - 32)  HIGH

18 Comments Post a Comment
Avatar m tn
Just wanted to let you know that an answer is coming.  I just want to do some more searching and reading, so that I can provide a better response than I could right now.
Avatar f tn
You are the BEST. You always come through, just so kind. I really appreciate that, gimel. Any advice that comes from you is always helpful.
393685 tn?1425816122
Im a little rushed also today :(. Here is a quick copy and paste specifically on RT3 I like to use:

Reverse T3 dominance, also known as Wilson’s Syndrome, is a condition that exhibits most hypothyroid symptoms although circulating levels of T3 and T4 are within normal test limits. The metabolism of T4 into rT3 is in excess when compared to T3 therefore it is a T4 metabolism malfunction rather than a straight forward thyroid deficiency. Periods of prolonged stress may cause an increase in cortisol levels as the adrenal glands respond to the stress. The high cortisol levels inhibit the 5-deiodinase enzyme and thus the conversion of T4 into T3 thus reducing active T3 levels. The conversion of T4 is then shunted towards the production of the inactive rT3 via the 5′-deiodinase enzyme. This rT3 dominance may persist even after the stress passes and cortisol levels have returned to normal as the rT3:T3 imbalance itself may also inhibit the 5-deiodinase enzyme thus perpetuating the production of the inactive rT3 isomer. There is some argument to this last point with some research indicating that the elevated rT3 is only temporary and not a permanent condition and in most healthy people this may well be the case. We have however found that in many patients suffering from a range of hypothyroid symptoms do indeed have prolonged elevated rT3 levels which respond favorably to this treatment. Many medical practitioners do not accept rT3 dominance theory and thus many doctors will refuse to treat this condition despite the fact many suffers have been successfully treated. See below for the evidence in the references.

Other causes of reverse T3 dominance include: leptin resistance, inflammation (NF kappa-B), Extreme dieting, nutrient difficiencies such as low iron, selenium, zinc, chromium, Vit B6 and B12, Vit D and iodine (including Ferritin), Insulin dependent Diabetes, Low Vit B12, Ageing (aging), all forms of stress such as Burns/thermal injury, Chemical exposure, Cold exposure, Chronic alcohol intake, Free radical load, Hemorrhagic shock, Liver disease, Kidney disease, Severe or systemic illness, severe injury, Surgery, Toxic metal exposure.

Here is the entire link if you wish to review.

PS - Thanks for the note :) I'll look that over.
Avatar f tn
Thanks Stella, I will review.

I had one 24 hour urine test back after I had the return of symptoms with Armour. This was with a pituitary doctor. The test came back at 20 with a high range of 19. she told me it was insignificant and not to worry about it. She was another endo who told me I shouldn't be on meds at all because of my low TSH. In the meantime I had gained back the 15 lbs. that I had previously lost (gained in 3 weeks, no dietary change). She yelled at me that I would dissolve my bones and give myself a heart attack.

At that point, my PCP was so disgusted by the endos (5 of them) that she too over my treatment because she had seen everything in my CBC and lipid panel go back to normal on meds and the radical effects fluctuation in dosage had on my all my hair falling out again, for instance. So she has been helping me get my FREEs up where they are now, bbut she doesn't feel really comfortable about it because she is out of her depth.

My thyroid went south after exposure to extreme amounts of multiple kinds of molds in my house, the chemicals that were used to treat the house, and the perchlorethylene and out gassing dry cleaner bags from having everything I owned cleaned all at once. My TSH was never elevated above. 1.89. I got enlarged red blood cells and low white blood cells and was put on liquid B12, 1500 units every day. This made the bruising go away. The blood doc said it was pernicious anemia. Just prior to the mold exposure, I was in lawsuits over getting hit twice from the rear in my car, 11 months apart. And I was harassed in my home by a psychopath, resulting in a grant for mental health care from the State of CA as a victim of violent crime. And I was back in university getting a second degree, and my mother was dying. (probably of longterm untreated hypothyroidism mimicking psychosis and Alzheimer's.....she had ALL the hypo symptoms  for a long time, including feeling extremely cold all the time, hoarse voice, pemphagus/myxedema rash etc etc....but her "TSH was fine". Her body shut down, finally, and she died.) There were even MORE stressful things I won't go into. My Mom had Reynaud's and my sister has Hashimoto's. I was in back to back lawsuits for 7 years, which I won, but had to move from my lifetime home, and my relationship crumbled. And I have been fighting with endos since 2005. I have nodules, which have shrunk on meds. So I never saw how I COULDN'T have adrenal fatigue, but was told I didn't. I don't see how anyone could have been more stressed, and it has never really abated. Just trying to use my health insurance is a daily stressor.

I take selenium, Vit D, and B complex with high B12 daily. I also take zinc and chromium, amongst other supplements. My iron and ferritin levels are fine, as is glucose. But I have respiratory problems all the time since the mold and thyroid problems and just finished 5 rounds of various antibiotics for the last one, which turned into a pseudomonas and strep B infection. I was sick for 4 months.

The first time I tested for rT3, the ratio was 2.0. That was about a year ago. Now the ratio is 10. I have never reacted positively to T4. When I first went on it because of the nodules, I felt worse and my symptoms increased. I am extremely reactive to changes in T3. I have said all along to my doctors that part of what is wrong with me is myxedema...I have the deposits and the rash. But they then start belittling me and scoffing and talking about myxedema coma, which of course is not the same thing at all. I am completely exhausted, and at this point most days just wish I was dead. I've fought really hard for myself, but I don't think I have much fight left. Especially since I have no one to help me and my insurance company interferes with my ability to get proper testing and find a doctor with enough knowledge and patience to persevere.  
Avatar m tn
A couple of questions, if you please, before going further.  You mentioned an rT3 ratio of 2.0 a year ago.  What were you actual Free T3 and Free T4 and rT3 test results?  How were you feeling at that time? What were your meds and dosages at that time?

Also, please post (yet again probably) your actual test results and ranges for the selenium, Vitamin D, B12, zinc, ferritin and iron tests.  Was that 24 hour urine test for cortisol?

Are the 150 mcg of Levo and 30 of Cytomel your current meds and dosage?  What would you list as your most bothersome symptoms right now?  Other than being frustrated with all these questions?  LOL
Avatar f tn
Yes, the 150 mcg levothyroxine and the 30 mcg Cytomel are my current meds. Most bothersome symptoms right now are depression and anxiety, edema, rash, foot spasms, and foot spasms. I'm also waking up every night at 3 am after a few hours of sleep and finding it hard to go back to sleep for hours. It is really messing with my cycle. Also I'm switching letters inside words as I'm typing.

From my blood test in August, on the same doses and at the same time of day, fasting :

Vitamin D          53      (30 - 100)  
My doc then told me to take 1000 additional units, but didn't think it was necessary to re-test

Vitamin B12      851     (200 - 1100)

Vitamin A          70      (38 - 98)

I've never been tested for selenium or zinc, just take a basic recommended dose. Iron and ferritin have always been unremarkable whenever they have been tested, and I remember my doc said not to take any extra iron. I thought I had ferritin tested last month when vitamins were done l, but don't find any recent report for it so maybe that test got skipped.

The test for cortisol WAS 24 hour urine test, done 3/31/2010 I don't remember what dose of meds I was on. results were:

Cortisol AM               20.4       (6.2 - 19.4)     HIGH
URN Creatinine/TV       .9        (2 - 2)             LOW      

This was at the pituitary center. I was told these results were fine and that I shouldn't be on medication at all, that I was going to dissolve my bones and give myself a heart attack. My PCP took over my care at that point.....I had just gained 15 lbs. in 3 weeks with hair loss, depression, brain fog and anxiety after previous endo lowered my meds....he thought the T3 dose was "too high", while testing it shortly after I took it.

I found a previous thread for the rT3 test I had in 2011. I will attach some of it below.                                                
Avatar f tn
Won't let me print pieces, here is the link. It has all the lab results back then, especially in my last comment.
Avatar f tn
Tinnitis is twice as loud today as it was yesterday. Very intrusive. And feet are sweating and smelly. That also went completely away when I first went on dial meds. So confused.
Avatar f tn

I stopped taking my T4. This is day 4. I have a whole bunch (525) of 5 mcg generic T3 that Express Scripts sent instead of the brand and wouldn't take back. So I have, so far, taken my 30 mcg dose of Cytomel in the morning as usual, and then another 5 mcg of the generic, twice, once in the middle of the day and again at the end of the day before I go to bed, for the past 2 days, as I can feel that anxious feeling start to come on at those times. I know this isn't the best thing to do, but I can't get in to see my doc until the 16th, and because she's not an endo, she's not going to know what to do anyway.

Yesterday, for the first time in months, I slept a little better, my stomach feels better, and this morning my feet have actual signs of tendons and ankles and I feel less swollen in my hands as well. I have told my doctors all along that I have non-pitting edema but they do nothing or tell me I should wear support hose. I also point out mucinoses, and they tell me they don't know what that is. In any case, I feel better today than I did 4 days ago. ALL of the swelling went away when I first went on T3 with a much lower dose of T4 than I am on now. I looked like a deflated balloon. But I felt better than than I ever have since.

I think it could be dangerous for me, but I guess I'll just have to go on how I feel and add T3 in small doses if I need to according to symptoms. I read everything I could find on rT3 that I was given and tried to find more on my own. Nothing I read suggested anything other than to stop T4 and wait.

Wish I could go to Dr. Holtorf, who is near to where I live. But he does not take insurance.

Any further references to read, or other thoughts ? Thanks.

Avatar m tn
Sorry for my slow response.  Lots of info to go through and try to make sense of it all.  Still not satisfied with that, so please help me clarify a few things.  

Above you mentioned you tried to go to Armour, instead of the 50 mcg of T4 and 25 mcg of T3.  What were those resultant bad effects?  what was the dosage of Armour?  Was it intended to be full replacement or partial substitution?

Stella and I gave you a long list of possible contributors to excess rT3 conversion.  These include the following:
leptin resistance
high cortisol
inflammation (NF kappa-B)
Extreme dieting
low iron (including low ferritin)
Vit B6
Vit D
Insulin dependent Diabetes,
all forms of stress (such as Burns/thermal injury, Chemical exposure,        Cold exposure, Chronic alcohol intake, Free radical load, Hemorrhagic shock)
Liver disease
Kidney disease
Severe or systemic illness
severe injury
Toxic metal exposure

There appears to be only a few approaches to treating rT3 problems.  Please forgive me if I am being redundant, but one of those is to address any possible contributors, such as those listed above.  Would you please take a minute and tell us about your status as it applies to each of these.  In other words, for those that can be laboratory tested, do you have results that indicate a possible contribution to the problem, or not.  For others, please give your subjective evaluation of their potential contribution.  

If any of these are possible contributors, then they need to be addressed, if possible.  Even then we may find that the only viable approach is to go with the T3 only treatment.  More about that in next post.

Avatar f tn
Thank you so much for getting back to me, however I am confused now by why you are asking these questions again. After Stella sent me the link, above, I answered a lot of the questions you are asking me now in this same thread, addressed to her. Then you posted, and I answered more of them, again, above. Then I posted the link to last year's rT3 post, where I gave much of the same information including labs at that time. Was there something I missed, because you are asking me almost the same questions again. There is no reason for you to help me at all, but it is frustrating when I have answered so many of these questions already. I am trying to do my best. But you know what happenes emotionally when the balance of meds goes off. Forgive any grumpiness, I beg you.

1) The Armour was meant to replace the T4/T3 I was already on, which was doing the job. I just asked her to switch me, hoping to be "more natural" and to only have to take one pill instead of two. BIG ERROR on my part. My PCP thought she calculated the grains to match up. But I immediately relapsed into total hypo symptoms. The depression component was dangerous to me...I keep saying this is myxedema, based on the look of it and how much weight I lose in a short time when meds are ok...that's GOT to be the fluid they talk about, which is not water. This was in 2009, I think. When I went back on the dual meds at the previous dose, I returned to health until generic T3 was substituted without my knowledge and I went hyper, then in dosage hell ever since, blood tests every 5 weeks for years now to get to the place in the range I am in. But now rT3.

2) My PCP refused to test for leptin resistance, saying she didn't know what it was for. I didn't know either, just knew it was recommended. She won't, unless you can tell me how to convince her. I see her on the 16th.

3) I discussed cortisol above in response to your previous question. Had serum test more recently, it was within range. Is the range critical ? If so, I will have to search for the test.

4) What is NF Kappa-B ? I will Google. Just got results of recent skin sample back late Friday from dermatologist for rash. No cancer (didn't think there was) "Keratosis inflammation." Appointment on Tuesday to discuss. Looks like mucinoses  to me, from pictures online. also thyroid -related folliculitis...which was 1st symptom during mold exposure. Had Nat Killer cell tests, in range.

5) No dieting

6) iron and ferritin see above, always ok. If you need test results even though "in range," I will have to search, but never a flag.

7) other vitamins, answered above

8) No diabetes, glucose normal...was getting high before I went on T3, then like cholesterol, went back to my normal.

9) Had mold and chemical exposure back in 2000 - 2004. (Lawsuit level) Didn't I address that in link ? i think that's what made my thyroid finally go south, although I had tested poorly for hypothalamus axix by kinesiologist many times following multiple hit-from-the-rear car accidents w/ severe whiplash and concussion.

10) Had hepatitis (dirty water type) in early 70s. Have since been cleared to give blood, no residual problems. I used to live in Afghanistan and Pakistan. I got sick there. I also had multiple parasites, which led to a diagnosis of tropical sprue, with malabsorption. But that was healed at Loma Linda Hospital, with a high dose of B vitamins back in the 70's.

11) No severe injuries other than the disc problems that resulted from multiple car accidents and a broken elbow from a fall last year, which exacerbated my previous back injuries.

12) No toxic metal exposure that I know of.

13) After the mold and chemical exposure, I was diagnosed with pernicious anemia and had a history of unusual and long-lasting bruising. I was told to take 1500 units of sublingual B12 with the other Bs included. I have done this religiously every day ever since 2004 and no longer have unusual bruising.

14) As I mentioned above, I was sick from mid-March until the beginning of the second week in July with a pseudomonas infection in my lungs and strep B. I took FIVE rounds of various antibiotics. V. concerned about that, but that's what it took to recover. Last dose of amoxicillin finished 3 weeks ago. I am now starting to cough again. I am constantly sick with respiratory problems since the mold and subsequent thyroid problem, but do not have COPD and have always passed all lung function tests. Never a smoker. Don't drink much. X-rays clear.

I know it's a lot to digest and do appreciate you taking the time. I took my usual 30 mcg Cytomel this am. I have NEVER felt a "rush" from taking that amount of  T3 all at once. Felt "funny" to describe it ? I guess "anxious".... around 3:30 pm. Took 5 mcg generic T3. Within half an hour, felt ok. It's now 7 pm. Monitoring myself. Feel ok still. I am minus 150 mcg T4 for 4 days now. Am keeping in mind that 5 mcg T3 = 20 mcg T4. Am I correct about that ? And that it is not advised to take over 125 mcg T3 for rT3. Scary stuff. But I seriously feel better right now than I have felt for months. Weird.

Thanks gimel. No pressure. Hahahahahaaaaaaa. Really though, please don't feel it.
Avatar m tn
With what you have been going through you have every reason to be grumpy.  I am sorry to be adding to your frustration, but I am trying to pull all this together from several threads and multiple posts, and organize it so that I can get my head around it, and hopefully be at least a little bit helpful.  So let me try to go through what we have above and re-state what we know or don't know.  

>First, you felt your very best back in 2009 when you were taking 50 mcg of T4 and 25 mcg of T3.  

>In trying to switch to Armour Thyroid, the doctor apparently incorrectly calculated the dosage and you had a bad reaction, back to being hypo again.

>Various Endos screwed around with your meds over a long period, during which you never felt as good as back when you were on the 50 and 25 mcg of T4 and T3.

>In may, 2012, your PCP suggested that for six months you stay on your dose at that time, which was 150 T4 and 30 T3.   Not sure timewise when you got up to that amount.  

>Since May, you have "just been feeling swollen and worse, and even have several types of rash, one of which looks like mucinosis and the other little blistery bumps. It became so extreme that a dermatologist took a biopsy on the 20th and I'm awaiting the results of the inflammation. But the good news is that my hair stopped falling out and the spooning in my fingernails is almost gone, and they are strong and growing again."

1. No further questions about the Armour.
2. Leptin resistance is listed as one of the possible contributors to excess rT3.  My simplistic understanding of this is that if you are leptin resistant, that will cause weight gain, which in turn will contribute to dieting, and thus to the body responding by converting more rT3 than normal.  If you haven't dieted seriously, then not a likely concern.

3.  In view of your latest test result, no further questions at present on cortisol.  

4.  Let's see what the doctor has to say on Tuesday.

5.  Not dieting currently.  Have you done any serious dieting in past year?

6.  Would like to know actual test results of iron, ferritin, and zinc.  If not tested for chromium and selenium, would be a good idea.  

7.  Vitamin D is a bit low for best results.  B12 is fine.  No idea of the importance of B6.  

>other.  You've certainly had some serious injuries and also been under a lot of stress over the last few years.  These certainly could have contributed, but the most stress you could eliminate is that surrounding your thyroid problems.

So, the bottom line to me is that in the above list there is not a lot of possibilities for significantly reducing the tendency to convert too much T4 to T3.  And in view of your Free T3 to rT3 ratio, the most logical approach would be to go the route you are taking already, switching to T3, only very carefully.  I say that because when you do clear out  much of the rT3, you can become very hypo very quickly, as I understand it.  Also, in my searching I did find some feedback that indicated that most of the people that had a low Free T3 to rT3 ratio had to go that route to solve their problem.  Nothing else seemed to work for them.

From what you said you have totally deleted T4 from your meds.  Although I have read that the T3 only protocol is to use a dose from 75-125 mcg of T3 only, those are huge amounts of T3.  T3 is considered as being somewhere between 4 and 6.7 times as active as T4.    So the dose at which you felt your best back in 2009 was the equivalent of about 150  to 217 mcg of T4.  Similarly your current dose would be equal to about 140 to 234 mcg of T4, dependent on your assumption about how active it is.  By using 35 mcg of T3,  when your rT3 clears, you should be close to the level at which you previously felt your best.  My point is that I really think you should be doing this only in conjunction with a doctor, and proceed real slowly, and with great attention to how you are feeling.
Avatar f tn
Thanks so much for getting back to me, I really appreciate it. I have NEVER dieted at all, in my whole life. I have never needed to do so. Before now, I have had about 5% body fat my whole life without trying, although I was an active person both at work and, body surfing, biking, inline skates. Because of the back injuries, I am now reduced to walking and going to water aerobics several times a week. I have never eaten beyond where I feel full, I've never felt attracted to snacking, I don't eat processed foods, and I think my diet is pretty balanced over all. I've been the kind of person who, when nervous or upset, tends NOT to eat.

I bumped up to my current dose of medication over the last year or so by having blood tests every 5 or 6 weeks and slowly adjusting the medication to achieve the middle range for T4 and the upper !/4 for T3. Endos at one point lowered my T3 to 15 mcg, with the T4 at 75 or 100 as I recall. My hair was falling out in handsful and I ballooned 15 lbs. in 3 weeks. My PCP was so appalled that she let me just get the bloodtests and adjust the meds that way. Aa of last May, the T3 was lower by 5 mcg and that was too low, then higher by 5 mcg and it went out of range and I felt hyper. I tried to have the T4 carry as much of the load as possible, testing to see if T3 would rise by adjusting T4. I react radically to minute changes in T3, but have never felt much different adjusting T4, except that my hair grew back and my fingernails stopped splitting. But the edema has been an issue ever since Jan. 2010, when I went hyper on generic T3 at the same dose I had been on with Cytomel.

This all has me so confused. I'm already ON 30 mcg of T3. By eliminating 150 mcg of T4, that seems like a huge change. I don't think 5 mcg MORE of t3 is going t replace it. All I can tell so far is that after a certain amount of time, I start to feel jittery and taking another 5 mcg of T3 makes it go away. I am used to taking the 30 mcg of Cytomel all at once in the morning. So I've kept doing that. Yesterday I felt the need to take another 5mcg at around 5 pm, and another one at around midnight. I am sleeping better, strangely. It's affected elimination, however.

I don't know a doctor to turn to. already all the doctors I've been to in LA have told me T3 is not necessary and want to take me off of it, and are freaked by my lack of measurable TSH. I honestly don't think I'm going to FIND a doctor's care to monitor me. I asked my PCP if she didnt think I needed another ultrasound of the nodules this year and she said she didn't think that or a bone density test were necessary every year. The most I can hope for is getting my primary to let me have a blood test once a month and see what the rT3 does. Maybe. She has already told me she doesn't feel comfortable treating me as it is, because she doesn't know enough. I'm worried. And I think when rT3 clears, it's more likely to become HYPER, because then the T3 will get through. Don't you ? That was my interpretation, from what I read. And to me, hyper is much more dangerous to the heart.

Thanks again.

Avatar m tn
I agree that eliminating 150 mcg of T4 seems like a huge change, but think of it this way.  A large part of that T4 was being converted to Reverse T3 and therefore, not really having much effect on your symptoms.  You are replacing some of the T4 by the additional 5 mcg doses of T3 that you have added.  You may find that you need to continue to gradually add some more T3 to prevent hypo symptoms, but I was trying to make sure that you didn't go too far, too soon because as I also understand it, when the rT3 does substantially clear, as you said you can have a real fast switch to being hyper.  You absolutely do not want that to happen.  So even though you are anxious to feel better, slow and sure is the best approach.  

I understand your frustration about doctors, but I would feel much better if we can locate a doctor that can help with your plan.  I am reaching out to one doctor to see if he will respond with info on how he would treat a rT3 dominance problem like yours.  
Avatar f tn
Dear gimel,

I do have an appointment with my PCP on the 16th, and I emailed her last night, telling her what was going on. But I know her well enough to know that she is going to be completely freaked out and want me to go to an endocrinologist. My gynocologist (at Cedars Sinai hospital in Los Angeles) is a specialist in women's hormones and she told me that with my sub-normal TSH, she doubted that I would be able to find an endo who would be comfortable with that, even though SHE understands perfectly. She told me that she received a memo sent around to all the endos at Cedars (and she thought it had gone out to all endos in LA, probably from AACE or ATA, telling them that they risked keeping their "special certificate" if they didn't adhere to the party line.) Barb questioned me about my saying that, previously, but I am simply quoting what my doctor said to me. She was upset about it, and said it is getting more and more difficult to practice in terms of hormones between the AACE and insurance companies wanting women to take other than bio-identical hormones for HRT. She deals with complicated pregnancies and post-partum depression as well.

My insurance company, Anthem, has excluded UCLA from their contract, and in any case, the head of the endocrinology department there is the doctor who wrote the flawed paper that states that T3 is know, the one that the AACE and ATA use to back up their stupid guidelines. I'm so tired of fighting, this has been going on since 2005. I actually had to undergo eyelid surgery because it drooped so much that it was interfering with my peripheral vision. When I look at the "before" picture and my old driver's license photos now, It's pretty clear to see that I had the classic presentation for fairly advanced hypothyroidism...pumpkin head with those bumps on the cheekbones and swollen around the eyes. And even though I had every other symptom too, I couldn't be hypo because my TSH was 1.89. How much can I fight with them ? Last night in bed one of my feet cramped up with toes splaying in different directions, and the cramp even started to go into my calf. Definitely hypo.

So I understand your advice about the additional T3, and I am proceeding cautiously. This is day 6 without T4, so I imagine I will start to feel the withdrawal pretty soon, at which time I'll just have to be judicious. Thanks so much for the help, I'm so sincerely grateful. If you can find me a doctor, you are a wizard.
Avatar m tn
Be aware that when RT3 clears you may also be able to go back to "reasonable" levels of T4 medication. At least in some people.

I see you take a relatively huge 30 mcg dosage all at once in the morning.  I might suggest that you take this in at least 2 doses a day. Especially with going T3 only. As if you do clear out and you take a huge dose you could go extremely hyper.  So by splitting into twice a day, you may be able to monitor the situation better.

you may find as it starts to clear out that you can reduce the T3 doses. I'm not sure how far you can split the pills or what other mcg pills you have in storage that you can adjust.  But as the RT3 clears it would make sens that you would start to need less and less T3 medication.  So you will want to plan for that weaning process.

Going from 30 mcg to zero doesn't make sense either.

I really wish you could find a Dr to help you out.  Going it alone is not the best idea.  But how fouled up the medical industry is with Thyroid sometimes it seems there is no other choice!
Avatar f tn
I hear you. However, I have always been on 25 - 30 mcg of Cytomel....the one time it was dropped to 15 mcg, I went hypo really fast. And I have tested rT3 in the past and it was THERE, (ratio 1.6 as I recall, instead of 10 like now, on the same dose of T3 but lower T4) but not high like this. The only thing that has varied (since 2009) is the T4. And I have always taken T3 all at once and never felt any kind of "rush". I experimented with taking half in the afternoon and found that not only did I not feel any differently, but that I tended to forget to take it. Having to live my life by an alarm is not my idea of a good time, and if I don't have to, I'd prefer not to do so.

So far (this is day 7) I have only felt the need to take one additional 5 mcg tablet at around 3 pm, after taking the initial dose at around 7:30 am. I don't know how to describe the feeling really....I guess just anxious. And I found that went away about 15 minutes after taking the additional tablet. I have slept better as well. It's just very very strange. I am lucky that to get the 30 mcg that I take normally, I have to get 6/5mcg tablets to make the dose. And I have a giant 3 month supply bottle of the generic 5 mcg from Paddock that was a mistake on Express Scripts' part, subbing it for the brand without telling me. They wouldn't take it back, so that's what I'm using for the extra pills.

I assume that starting now, the T4 reserve will start to drop. Then I'll just have to wing it as to how I feel, and see my doc next week. My thinking is that when the rT3 clears, I can just drop back to the usual dose of Cytomel and add some T4 back in, perhaps at the 50 - 75 mcg dose I was on in the very beginning. That puts my T4 in the lower part of the range, but maybe that's normal for me ? I wish that for once in my life, I could just be "standard' . Never happens. My temperature has been consistently low, around 97.3 when it has been 98.6 all my life. I dropped my good old mercury thermometer and broke it. I find the digital ones to be highly inaccurate. What to do ? Does anyone have a suggestion on where to obtain an accurate thermometer ? Because I think taking my temperature would be a good thing to do.

Thanks for the support Mel.
Avatar m tn
Sent PM with some info.
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