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T3 and Patients' Experiences: Symptoms

Notes

  • Not all hypothyroid patients who try T3 experience an improvement in their health, although the vast majority of those who post at alt.support.thyroid do. The purpose of this compilation is to show that there are a lot of us who need T3 supplementation in addition to T4 to feel well, and that symptoms can seriously affect our lives even when our numbers are in range and we're on T4 only.
  • Some people may have more than one entry because they focused on a different aspect of how T3 affected them each time.
  • Unless otherwise specified, all posts were posted to the newsgroup alt.support.thyroid. Instructions on how to access this group and its archives are at www.altsupportthyroid.org/findus.php.
  • For space reasons, only the most relevant segments of each post are included here.
  • Because of the size of this compilation, it is divided into several parts, as follows:

Definitions

  • T4 and T3 are thyroid hormones.
  • Synthroid and Levoxyl are brands of synthetic T4 (thyroxine).
  • Cytomel (US and Canada) and Tertroxin (UK) are brand names of synthetic T3.
  • Thyrolar is the brand name of a synthetic T4/T3 combination.

"Amethyst Ivy" June 25 & 26, 2001

I'm taking 5mcg's of Cytomel with no side effects. I started feeling better after 5 days. A little amount goes a long way.

The symptoms that didn't go away with T4 alone were; constipation, inability to lose weight, lack of energy, & muscle pains in the legs. After a week of taking Cytomel, all improved, except for the weight issue.

"Suchman" (Nancy) May 9, 2001

For those of you that don't know or remember me, here is a short description of my history. I have been hashi/hypo for almost 10 years. Last summer I was at the end of my rope. I was taking 225mcg Synthroid (T4) daily and still feeling like crap. I discovered this WONDERFUL group and started reading everything that everyone recommended. As a result of everyone's encouraging words and fabulous wisdom I started a low carb diet and lost 20 pounds, then I got my Endo to give me Cytomel (T3) and drop my dose of the Synthroid. No matter how high my Synthroid dose my Free T3 was always low. Well, I lost another 10 pounds, and best of all the brain fog was GONE!

Now for the really good news.....In January I got pregnant again! This time without temp. charts, painful tests or hormone treatments. We weren't even really trying. It was such a WONDERFUL surprise! I am convinced that the Cytomel is what made my cycles regular again. This pregnancy is going much better than the first one. I am 17 weeks into it and there is still no swelling, and my blood pressure is still normal (last time I had already taken my rings off and had to buy bigger shoes).

So, I would like to say a heartfelt thanks to this group, especially some of you long time regulars. You have improved my life (and my family's) 100 percent.

"GZ" March 6, 2001

I'm a 48 yr. old, 180lb. male who was diagnosed hypothyroid 5 years ago. For 4 years I took Levoxyl only, gradually increasing the dose to 137mcg. However, certain symptoms never eased: brain fog, cold all the time, insomnia and trouble keeping my weight down despite limiting daily calorie intake to 1200 and running 5 miles per day. As my TSH was now consistently in the 2 range my doctor refused to make any dosage changes. Finally, after subscribing to Mary Shomon's newsletter, I realized I had to change doctors. I got lucky and the first Endo I tried was open to using T3/T4 combos and used symptoms as the main guide, not test results.

I'm now taking 125mcg Levoxyl/15mcg Cytomel (10mcg Cytomel AM/5mcg PM). The brain fog (the most disturbing symptom, especially for a computer chip design engineer) is virtually gone. I still have the occasional fuzzy morning, but am almost always clear headed by late morning. I'm almost never cold, get 7-8 hours sleep each night, can eat normally without gaining weight, can go for runs longer than 5 miles without muscle cramps, etc. My TSH is routinely below 0.1 but I have no erratic heart beat and my resting pulse is 58 with blood pressure 120/80. Thinking back 10 years or so, before the thyroid symptoms developed, I would say I don't feel 100%. Some days I can still detect some of those Hypothyroid symptoms. But I feel 1000% better than I did before adding the T3.

"EA" March 5, 2001

I had muscle spasms, pain and a flu-like feeling until my doctor added T3 (Cytomel) at a low dose then it went away in less than two weeks. You may want to discuss it with your doctor.

"Laura" February 28, 2001

b) If you are on only T4 supplementation, is it enough to eliminate your hypo symptoms?

No

c) If you have taken or are taking T3, did/does it make a difference for you?

Took care of the last lingering symptoms

"EE" February 21, 2001

b) If you are on only T4 supplementation, is it enough to eliminate your hypo symptoms?

When I was on Levoxyl, I still had many hypo symptoms and did not feel truly well at all.

c) If you have taken or are taking T3, did/does it make a difference for you?

YES! As I mentioned above, since I started taking Thyrolar (at the proper dosage - thanks, Ted!) I feel better than I have in years. Better than that, I feel reborn!

"Amethyst Ivy" February 20, 2001

I had muscle aches in my legs every night. After about 5 days of adding 5mcg Cytomel, the leg aches were gone. Cytomel was like a miracle drug to me.

[from a different thread] The levoxyl only helped a few of my symptoms. The big break was adding the Cytomel. All my symptoms went away, except that it didn't help with weight.

"Marianna" February 16, 2001

...I was on medication about six years and my neck still hurt until I took the T3 Tertroxin here in the UK (Cynomel France, Cytomel US) and I can tell you it made a huge difference to my life. Not only do I feel loads better but the neck was helped right away.

"Earthbound Misfit" January 22, 2001

the difference between my general anesthesia recovery period prior to the addition of T3 was like night and day. I had surgeries prior to T3, recovery was slow and sickening. Post T3, much quicker and not as sick. in fact, after a recent surgery, I went back to work one week earlier than scheduled. and of course, I haven't found the med establishment would believe this.

"JF" November 7, 2000

Adding T3 has made a huge difference and I would strongly recommend it to any one who doesn't feel better with T4 only. I had increased Synthroid to .200 and became Hyper but still was tired all the time. This seems like a contradiction but I have come to realize that my body was Hyper and I was mentally tired.

"Tracy" September 19, 2000

Before I was diagnosed, I had a lot of digestion problems and hardly ate. I also had no energy past work, and slept when I came home. However, after I was diagnosed, I was put on Levoxyl, just enough to get me in the high normal range, and then I started gaining weight. I still had a lot of tiredness, and had hypoglycemia symptoms.

After my weight went over 200lbs. I sat up and said, "enough of this, this just aint right" and started educating myself about it, and not sitting back and taking it.

It's too soon to tell yet, but I was on Cytomel for 6 weeks before that, and it did help a lot. I lost 3 pounds in 6 weeks without exercising.

"cheryl" September 1, 2000

I'm new to this board and noticed that the "T3" issue hasn't changed much since I was fighting it a year ago. It makes me very angry that docs don't do their homework after med school. I have been taking T3 with my T4 now for a year and have never felt better. Even with just the T4 I was still depressed, anxiety attacks, weight gain, foggy head, tired, etc. The T3 immediately cleared the foggy head and the other symptoms went away soon after.

"SH" July 27, 2000

I had a similar problem and when I finally got to an endo I asked for a testosterone test. He didn't do one but he did give me some cytomel and it completely 'cured' the problem. It's only been a month but my sex drive is better than it has been in a very long time. There could be many root causes but the lack of T3 is sufficient to kill your libido.

"Lauri" July 5, 2000

There are some mornings when I wake up and my feet are painful and hard to walk on. This happens more often in my fingers (although almost gone since T3) where they are stiff and hard to bend in the morning. I think the thing in my feet is the same sort of thing.

"Laura" June 7, 2000

We raised my synthroid to 100mcg and kept me on 10mcg of cytomel. It took about two weeks, but I finally began feeling normal. My blood work looks good now. Both Free T3 and T4 are in the normal range except TSH is now suppressed, but I feel WONDERFUL. Constipation, brain fog, dry skin, and cold intolerance is gone. My blood pressure has even come down to really great levels. The weight is even beginning to come off as well. Let me repeat myself, I feel GREAT!

"Pat" April 29, 2000 (in an email to Gail; posted with their permission)

Against her better judgement the doctor let me go on 5mcg cytomel twice a day. She said she didn't think it would make a difference but she believes that a patient knows her body best. (She's a new doctor and very understanding). I saw her a month later, she had never seen me prior to the one visit when I was complaining about everything. When I walked into the office she said — Pat — don't even tell me — you look fantastic — I know the cytomel works and you are staying on it!!! She couldn't believe how much better I looked, how my personality was "up" instead of down, I can now sleep, I am off ambien for sleeping, I've lost weight and I'm just plain happy — again Thank you.

"Terri M" March 7, 2000

I'm dumbstruck reading about your troubles getting your meds switched. FWIW, my labs were in the normal range when my doctor switched me to Thyrolar. Last weekend, we went to visit my step-daughter. When we were over 100 miles down the road, I realized I'd forgotten my Thyrolar. I debated about going back and adding three+ hours to a 6-hour trip. Since my step-daughter is hypothyroid, I decided to use her Synthroid. Each day of the weekend, I needed an afternoon nap — I ran out of steam and couldn't go on, just fell asleep. OK, I only took 112mcg of Synthroid rather than 125 (I take 1-1/4 grains Thyrolar, which I'm pretty sure is therapeutically equivalent to 125mcg Synthroid, but STILL!!) I haven't needed an afternoon nap once since starting the Thyrolar and I have no brain fog, and I've stopped gaining weight — even lost 10#!. I gained 15# after starting Synthroid.

"John R" March 3, 2000

I had quite a few of the problems you are describing up to the point I started adding T3 to the mix. The sinuses cleared, the vision improved, headaches went away, libido returned, cognitive abilities improved, and sleep returned to normal. Those are just a few of the things that improved by adding a relatively cheap pill.

"Sonya" January 31, 2000

I would just like to tell everyone that I've been on the T-3 T-4 combination for 21 days and I'm feeling great. It has helped so many of my symptoms and today was the 2nd. day that I didn't have to have a nap. My muscle aches and bone pain are gone, the fatigue is gone, dry skin is so much better, brain fog is so much better, and I was having dizzy spells 2-3 times a day and I have only had 1 in 21 days. I wish everyone could get there Dr.'s to write it for them so they could feel better also. I haven't had much body temperature change yet but hopefully that will go up so I won't be so cold. Thanks for all the information so I could find out about the T-3.

"ElaineP" December 24, 1999

It's funny that I didn't think of the blurry vision and dizziness as thyroid related. It's amazing how quickly we forget pain. When I was still very hypo I had balance problems. I was even falling at strange times (not tripping over anything). As for the blurry vision, I should have thought of that since I started on Cytomel recently and one of the amazing results was that I found that my vision was sharper. (I hadn't thought of my vision as blurry before.)

"Marianna" December 12, 1999

I couldn't live without that 'extra 10%' of joy in my life.

I didn't like the brain fog. I didn't like being cold.

I LOVE taking the T3.

"Neville" December 7, 1999

My TSH was 0.06 a month ago and I was still hypo (brain fogged, poor memory) on 175mcg T4. I already feel much better on 125mcg T4 and 5mcg+5mcg T3. My stomach/intestines feel more settled, my head seems "clear" and memory is much improved. I assume that the reduced T4 will have allowed my TSH to increase — I'll let the group know when I retest in a few weeks.

One factor that doctors seem to look for is weight changes — expecting that hyper causes weight reduction. Since changing to T4/T3 I would say that I have lost some weight — but I put the reason down to the settled stomach, loss of an urge to eat sugary foods.

"JJ" December 1, 1999

I started taking "Timed Released T3" alone a month ago starting dose 7.5 mcg twice a day and immediately felt better, after two weeks I upped my dose to 15 mcg and feel absolutely great! like a normal person again with absolutely no side affects, no highs or lows, just normal (even mood) and my body temperature is rising steadily as I improve every day. I had all the HYPO symptoms and a very low body temperature (average 96.8). Previously a month of T4 therapy made me feel worse so I demanded the timed release T3 from my doctor.

"ElaineP" November 30, 1999

I experienced a calming effect within hours of taking my first 5 mcg dose. (decreasing anxiety I didn't know I had?) In the first week and a half I had some headaches, which I hear is common when starting T3. After 2 weeks I feel better than I have in a long time. No headaches. Just feeling normal. In the last few years I've been worried that there really wasn't such a thing as feeling normal, that I was expecting too much. I do feel a small crash in the evening, but it's nothing like the old brain fogged, don't make me move tiredness I used to feel. This could just be normal end of day tiredness — it's been so long that I've felt this good that I don't know what is normal or not.

"David" November 23, 1999

After being on just Thyroxine for 8+ years I also switched to the T4/T3 combination (Cytomel). My depression, brain fog, and tiredness are gone. I'm back in the land of the living.

"Robin" November 23, 1999

I have been on T3 for about 4 months. Before I had been on Synthroid for over a year with little relief from symptoms. I was tired all the time and was turning into a balloon. I was in a constant fog and extremely depressed. With a dosage of 5 mcg twice a day added to a lower dosage of Synthroid, I've been able to start functioning again. My color is better and I can think again. I also am not depressed again. I even have enough energy to go to the gym and exercise. The doctor says I need to give it another couple of months but that I'm on the road to recovery. I still suffer from fatigue in the afternoons. It has given me back my life.

"Marianna" November 22, 1999

My story is this: 37 yr old female started taking T3 in February 99 and life has changed. Periods <blush> are regular (I spotted for three years and had three gynae ops to no avail) I have not had a sinus infection since I started taking T3 after suffering from them for over 15 years and my energy level has improved. I am also warmer and can think clearly. I take 150mcgs thyroxine and 10-20 mcgs of Tertroxin daily.

"KB" November 22, 1999

I started taking Cytomel only (my T4 levels were normal) about 8 weeks ago. After suffering with brain fog, muscle pain, tiredness, inability to concentrate, joint pain, and who knows what else; I feel much better. I couldn't find T3 in a timed release formula so I had my Dr. prescribe it in the 5 mcg. pills. I take these every 2-3 hours during the day. That has helped me an immense amount. I did feel hyper for about 3 hours when I was on the 25 mcg. pills once a day. Then about 7 at night I would crash hard. Now I am doing better.

"Magda" November 22, 1999

I had been on T4 for six months and feeling as bad as always, when I started T3. In one week the muscle pain I had had for so long — I used to think it was "fatigue", it was *pain* ! — disappeared, and I was happily walking kilometres again without stopping "to rest". I used to feel cold to the bones, but that was gone too. These days I swear, I'd rather go without food, than without my beloved T3 ! Luckily, it's so dirty cheap I don't risk hung pains ! ;-))

"NV" November 16, 1999

Adding Cytomel to my Synthroid has literally changed my life. I feel better than I can ever remember feeling. I had my IQ tested before and after the Cytomel and it went up twenty points. I now have a programming job that I could never have handled before, and am the top candidate for another job as senior programmer for another company at more than twice the salary I was making one year ago. My weight has stabilized at what is in my opinion about ten pounds too much, but I'm comfortable with that...I was thirty pounds heavier and according to my family, they could see the weight "melt" off after starting the Cytomel. I now only need about 7 hours sleep a night, compared to needing up to 12 hours before. I have a much better attitude about life and am really having fun with life now, for the first time in a very long time. I actually didn't know it could be so good.