Given the cyclical nature of KLS episodes it is often difficult to assess if any medications or even changes in behavior are having a positive impact or if a person’s episode(s) just ended as part of the normal course. 

Recently we have heard of certain patients who have been using Cytomel (Liothryronine) and beleive it has been having a positive impact

The Foundation does not advocate the use of any specific drugs in the treatment of KLS and recommends that you seek the advice of your medical professional in using any medications.

However, the Foundation would be interested in collecting informal information regarding our members use of this drug and any results.  Please feel free to post the result to the forum or to send an email directly to the Foundation.

Hi Stephen,

I want to give you an update on how I am doing. I have been healthy for a little over a month now! I was admitted to the hospital (neurological department) on 12/10/2008 because of KLS. I stayed about 5 days in the Hospital. Before the stay, my mom had talked with a KLS mother that heard of a KLS girl trying Cytomel which prevented her from going into an episode. During my stay my mom asked the doctors to put me on Cytomel which they did. By the 2nd or 3rd day of the stay I slowly started to “wake up”! I was released from the hospital 5 days later and have been healthy ever since. I have had minor setbacks but much less severe. I believe that the Cytomel is helping me. This past month I have done more things than I have in the past 2 years. I believe the Cytomel is keeping me in reality, keeping my KLS symptoms light, letting me function through the day, giving me more energy, and letting me live the life I deserve. I feel better than I have in years. I feel like my body is on schedule now and my bodily functions (perspiration, appetite, digestion, autonomic system) are more normal and controlled. They aren’t nearly as out of whack as they were before the Cytomel. I was taking 10 mcg a day and just about a week ago I raised it to 15 mcg a day. I feel better on 15 and am able to do some things throughout the day and am not fighting to stay healthy. I think I’d even do better on more and would be able to get my full life back meaning school or work.
I am being monitored by a doctor for this medication. This medication is used to treat hypothyroidism. My blood work showed my thyroid functioned normal. However, I don’t believe it does function normally. The docs have said MRI scans are normal, CAT scans normal, blood work normal, EEG normal, etc. But come to find out by looking into the brain, they found a 15-30% loss of blood going to the thalamus region of my brain. I have learned that just because a test shows normal doesn’t mean the function is normal. My mom had read that it is possible for blood work to show normal thyroid levels but the hormones may not be metabolizing in the cells properly
and that can’t be measured.

I have a severe case of KLS (meaning my episodes are very frequent and last long). So for me to be awake for over a month, is a miracle. I know that many KLS patients are treated as psychological patients, but if your child is admitted to the hospital make sure they are in the neurological department if they have to be there. Of course, they should be at home with their families when ill but if they are at a hospital when ill hopefully they can stay in the neurological department. The neurological department was the best stay I have ever had in a hospital. I wasn’t locked up and treated like I was choosing to behave like that. They treated me how a sick person is supposed to be treated. They did have a sitter which was understandable but I was able to go to the bathroom by myself, they didn’t make me wake up at 7am to take behavior classes, and they let me walk around the hospital (with the sitter), which they do not allow in the psych wards. The first place a KLS person needs to be is at home with their parents but if they are in the hospital the neurological place is the next best place to be. I have a medical power of attorney for my mom or dad to be able to make decisions for me if I should fall sick.

My Beliefs: I believe that KLS is related to a comatose state and is possibly related to Myxedema coma. Cytomel treats hypothyroidism and Myxedema coma is a severe case of hypothyroidism.

Hope all is well!

Alanna

Correction:  ...they found a 15-30% loss of blood going to the thalamus region of my brain when in a KLS episode.

YES. My daughter takes 175mcg Levoxyl and 7.5mcg Cytomel 3 times per day. However, she had a sluggish hypothalmic-pituitary axis and they had to keep going up on the amount until they completely replaced it. It was like her thermostat level for thyroid was set too low. It was a complete surprise that this would have to be done - so took 4,5 years to raise the level because the doctors didn’t understand/expect that TSH level would just drop.

But there were other hormones that made a huge impact on her as well.

-Naomi

My daughter began having episodes in February 2008. She was diagnosed with KLS a few months later. Between that time and May 2009 (15 months) she had 10 episodes (every 1-2 months). Each episode lasted about a week.

I read the posts about Cytomel and suggested to her neurologist that we try it. He was willing to prescribe it, however he was worried about her taking it on a regular basis, so she only took it when she felt like she was getting sick and during an episode. We didn’t see much of a difference. Shortly after her episode in May she started feeling like she was getting sick again so she started taking the cytomel on her own and kept taking it even though she didn’t get sick. She has been taking it every day since then and she has not experienced another episode (it has been almost 4 months!). I don’t know if it is a coincidence or if the cytomel is working, but I thought I’d relate this info in case it may help someone else.

(She is taking 25mcg per day, cut in half…half in the morning, 1/2 in the afternoon. She has been to an endocrinologist and she does not have a thyroid problem. They have tested her off and on the cytomel.)

If anyone else has had success with cytomel, please post!

I wanted to add that BOTH my daughters have done best with both T4 & T3 levels in the UPPER THIRD range of “normal.” They both crash when they are in the bottom half of the “normal” range. The GP has been shocked at with even slightly below normal levels my younger daughter had a host of severe, classic signs of hypothyroidism.

I started Cytomel about a month ago, because of Alanna’s report of it.
Next week I’ll have a 6-wk checkup. 
My Thyroid tests were in the bottom one third of the normal range.

I believe it is having a good effect in that it is easier to be active when I’d rather sleep.  That is, the sleepiness hasn’t forced me down during these weeks, nor has the usual weakness been present.

We tried cytomel and thought it worked a little with my son’s second epiosde.  But, it failed to help at all with his third episode.

My second month with Cytomel wasn’t quite as good as the first month, tho it continued to help me be more active.  It seemed as if the episodes were coming a little more often, but for a shorter duration.  (Kinda’ hard to tell when you have several a month!)

I told my physician that it seemed a little less effective.  She ordered another blood test, then increased the dosage to 5mcg twice a day.  I didn’t want to take it late in the day, lest it spoil my “normal” sleep times, which I try to keep as steady as possible.  So she approved two 5mcg tablets once a day. I take it at or before breakfast now. 

The main difference with this increase is that I feel I have more strength/energy, and that feels so good.  I have more endurance.  I can keep going through an episode until I can get home to sleep. I have not felt fuzzy in the head.  All this since increasing Cytomel to 10 mcg a day, about one month ago.

Also, I started being more rigid about my sleep/wake times.  I set as many alarms as necessary to be sure I get up, as nearly as possible, at the same time each morning, so that I can take the med. at the same time each day.  (Even if I have to go back to bed.)  I feel that has helped me feel better, generally, but I can’t say anything specific about what or why that may be. 

Another thing, FYI, the Dr. had a Bone Density test done, as baseline info, and had me start taking Calcium and Vit D, because thyroid meds. (which is what Cytomel is) may cause a decrease in bone density.    Hope this helps.  joly

I took Cytomel last April for about a total of 6 weeks and felt wonderful, awake, and alert. I then began having bad headaches, dry cracked skin, facial acne and my lost almost HALF my hair. My physician cut back on the dose and the symptomes were the same but began to have cardiac palpations and chest pain. I stopped the medication and all the symptoms stopped except the acne and dry skin that took several months. I truly thought I was on the road to a normal life.

How disappointing!  I’m so sorry to hear it.
I continue on 10mcg and am thinking I’d like to increase it a little.  But the neurologist is doing much testing and now looking into an autoimmune disease of the thyroid and Hashimoto encephalitis.  The combination of thyroid and OSA could cause excessive sleep, so the next step is to rule out sleep apnea.

Hi everyone , well we as a family waited to post results to see how the teacher responded when my son returned to school . after careful review of the site and talking to several of the members i approached our endo about the trail of this drug with my son . I have to say we started at a low dose Liothryronine he takes a bigger dose now tring to prevent the sleep episodes fully we have gone 6 months .The first ,we can only pray . I agree with alanna . We have caught it young so do not know if this will mean that it will not maintain him . at the moment thought we see good results with the drug.

An update: Instead of taking the Levoxyl (T4) and the Cytomel (T3) separately, my younger daughter (both daughters, actually) now takes dessicated thyroid (Armour thyroid). No difference seen, actually, although my older daughter (who does not have KLS but has hypothyroidism) feels significantly better with it. Both need the levels high normal.

My thyroid tests fine but my dr put me on it.  I’ve been taking it for a few months and haven’t noticed any difference.  I also had just started Adderall at the same time which is more powerfull as far as energy so that could be why.  My episodes have been active all 4 months.

I posted in Sept 2009 when my daughter first started taking Cytomel.  She is still taking Cytomel every day (same dosage as Sept).  She still has episodes, but they are limited to every 3-4 months instead of every 1-2 months.  At one point she was put on another thyroid medicine (synthroid) in addition to the Cytomel (a different endocronologist than her normal one thought it would be a great idea), and she went into an episode within a month of starting the new meds and had two episodes in a row.  She has stopped the other thyroid meds and seems to be back to her sporadic episodes.

Taking the Cytomel regularly since last 6 months and there is control on the episodes a bit. It takes long time to respond.