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Discussion Starter · #1 ·
Hi Everyone,

I'm brand new here but have been reading thyroid forums all over the internet for some time. I have kind of an interesting 'Thyroid Journey' that I thought I'd share here - mainly because my treatment is the opposite of most cases I hear about. I was started on Cytomel (Liothyronine) to treat a clinically 'mild' case of Hypothyroid, vs starting on Levothyroxine. I am recently very symptomatic and diagnosed with Hashimotio's, so now cutting Cytomel and adding Levothroxine.

The question I have is that the endocrinologist prescribing the change didn't talk about titrating me down on Cytomel and onto Levo, she just cut Cytomel from 25mcg (in the morning) to 17.5mcg (over the day) and added 50mcg of Levothroxine. I was nervous about this and felt really strange the first day, but am feeling kind of immediately better these second and third days. So, just curious if anyone out there has experience or opinions on this. In my experience, starting and increasing Cytomel has an efficacy lag time of up to 6 weeks; I was wondering if this is the experience people have had with Levo as well.

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My Story:

I was uninsured from about 19 to 30 years old and then sporadically insured until about 35. I also moved A LOT. I think the combo of these two things kept me from a proper diagnosis until recently.

Back when I finally got subsidized health insurance (healthy San Francisco) in 2010 the first thyroid lab run in a decade came back with TSH on the high end, around 5. The following test showed a normal value, and because it was subsidized insurance the Dr. wouldn't run another.

From this point I suspected a thyroid issue but it would be years until I was both insured and seeing a provider who took my concerns seriously and let me advocate for myself to get this diagnosed and treated. I ran across some incompetent and condescending Dr's in this time and I'll say this: if you feel this from a primary provider, find a different one.

Here are the symptoms I'd been experiencing since my early 20's that were only getting worse into my 30's:

- Depression (severe, persistent)
- Anxiety (severe, persistent)
- Low energy / fatigue
- Low to no libido
- Disrupted sleep; insomnia
- Running cold
- Difficulty concentrating

It took finally getting involved in a clinic with an integrated care approach to diagnose this thyroid issue. At this clinic I saw a therapist, psychiatrist, primary and there are specialists like endocrinologists and chiropractors cycling through. The psychiatrist thought I was symptomatic enough to treat hypothyroid at this 'subclinical' level and the primary agreed. They also saw my levels bouncing around (like one month TSH 5, the next TSH 2.3, always creeping back up, never below 2) and agreed there was precedent to try and stabilize this.

I was started on 5mcg of Cytomel (Liothyronine), pretty much at the beginning of 2016, and it changed my life. Not all of those symptoms disappeared, but half were completely reversed. The other half: anxiety and sleep disturbance stayed the same, and difficulty concentrating got worse. Still, I thought "I'll take it!". This is the first time I felt like a functional human in around a decade. The following year was a pretty great one. I'd finally graduated college. I traveled a lot. I met new people. I started a relationship. I felt a sense of energy and confidence I'd been lacking for years.

I'm not going to get into the weeds of what happened over the next year and a half but the good experiences were equally weighted with stressors and then I tried starting grad school - which just kinda tipped it all over the edge. My health had a pretty hard negative correction and I was experiencing things like kidney infections and severe abdominal pain. In this time we doubled my dose from 5 to 10 mcg of Cytomel because I was starting to feel symptomatic again. It was then doubled again plus some to 25mcg. I was so preoccupied with all these issues and grad school, that I lapsed on getting thyroid labs done. By the time I did we saw that with all this med doubling, my levels were not very impacted. They were in range, but still creeping up to the high end.

I've learned through all of this that I feel best when my TSH is around 1.5, and it got there 3 months after starting Cytomel. After this year and a half and everything mentioned it was pushing 2.5 and upward again. I am aware this is 'normal' but I pay attention to where I feel good and I am lucky to have drs who will listen. Of course we are not going to over-treat this and push me into hyperthyroid, but I think, their thinking is, if we have a target number where I'm asymptomatic, why not work towards that.

Anyway. Recently my primary (who now left the clinic :( ) ran an antibody test, which showed some slight negative activity. The endo I saw a month later confirmed Hashimoto's. I've spoken to her about my symptoms at this point and this is where we are at now: cutting Cytomel, adding Levo.

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Some thoughts on Cytomel (T3)

So, just a note on Cytomel: In my experience, T3 is very helpful, but it for me it became less effective with time, and when out of balance or a little too much it can create negative symptoms. I can not believe how cloudy my thinking got just increasing from 20 to 25 mcg. It was scaring me. My sleep also changed dramatically, from comfortably waking up around 10, to not being able to sleep past dawn. And in the beginning, I wasn't able to fall asleep till 4 or 5 am. So I had a few months of just feeling wired, exhausted, on edge and anxious, and having increasing difficulty concentrating and with memory issues. Yes - these are symptoms that come with Hashimoto's, but the Cytomel really exacerbated them when it was too high of a dose for me. At a lower dose I think it has been really beneficial for me.

I just want to put this out there as I know a lot of folks are really curious about T3 and I see it somewhat glorified at times. I welcome any thoughts or questions about all this and am happy to share about my experience taking T3 as I know a lot of people with thyroid conditions have Dr's who will only prescribe T4. I'll also update how combination therapy goes.

One other thought: I have heard that starting T3 (Cytomel) can 'dump' a built up excess of (damaging) Reverse T3 at the start of therapy. I have a hunch that this is why I felt so great for the first year. But my endo told me, longer term studies in my demographic show that symptoms reverse in the short term and tend to go back to where they were in the longer term with only T3 treatment. I feel this has been true to my experience and I'm actually excited / optimistic to see what kind of stabilizing force adding some T4 might have.
 

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Welcome to the board!!

I'm glad you finally were able to receive treatment.

Do your doctors run any tests other than TSH? The reason I ask is because TSH can lab up to 6 weeks and is also impacted by thyroid antibodies.

What antibody tests have you had run and what were the results? TPO, Thyroglobulin?

Do they ever run a Free T-4 or Free T-3 lab on you?

Are your lab's drawn approx the same time daily and do you take your thyroid hormone prior to the lab draw?
 

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I went through about 6 years of trial and error with prescriptions..until I was lucky enough to encounter a great Endo...just before he retired..Finally got someone who was willing to measure my T3..and not just TSH and T4.. Although my TSH was very low...so was my T3..so he got me on a combination of Synthroid (125)and Cytomel(25), these past couple of years I've felt closer to normal than I have in a very long time. I've also read that straight Cytomel treatment could in the long run have a negative effect on your ability to produce TSH.
 

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I've also read that straight Cytomel treatment could in the long run have a negative effect on your ability to produce TSH.
Alot of people taking T3 hormone do not have much TSH. My doc says it's because they are properly medicated and in theory if properly medicated there should be little TSH registering.
 

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Discussion Starter · #5 ·
Hi Everyone,

Sorry I haven't replied since posting. Things got a little hectic with a new job. I appreciate the welcomes and replies.

Since starting the combination treatment I have been doing worse.

When I look back on my TSH results, while only on T3 my TSH was consistently within the reference range 0.358 UIU/mL - 3.740 UIU/mL, bouncing between around 1.5 and 3. That was since Jan 2016. The last two TSH labs pulled have been dramatically different, once far too low, the other too high.

Since starting combination T3/T4 we lowered my T3 from 25mcg to 17.5 mcg and added 50mcg T4. The results a month later were alarming:

TSH: 0.012 UIU/mL (Low, June 14)

T3: 198 ng/dL (High, June 14)

Free T4: 1.6 ng/dL (Normal/Pushing high end of range, June 14)

After this we left my T3 at 17.5mcg and reduced T4 to 25mcg. I've been feeling terrible and these are the lab results:

TSH: 7.190 UIU/mL (High, Aug 17)
T3: 116 ng/dL (Normal, Aug 17)
Free T4: 0.5 ng/dL (Low, Aug 17)

I'm really confused / concerned about what is going on here. I'm back to gaining weight, feeling bad, and foggy headed. A new primary who replaced the Dr. I loved seems to know nothing about thyroid (she thought T3 metabolizes to T4) but se looked at the June test results and said that the medication could be shutting my thyroid down. That is what led the Endocrinologist to lower the T4 to 25 mcg.

But now my labs still look terrible and I feel worse. I get confused about all the results, I know the amounts of t3 and free t4 indicate something and could mean I'm over medicated but I don't understand how they work together that well.

Meanwhile the Endo just says I have Hashimotos and my thyroid is slowly shutting down regardless, so it is appropriate to increase medication.

She is kind of leaving it in my hands: to stay on 25mg of T4 and increase to 25 mcg t3, or to drop T4 and increase T3 slowly to see how I'm feeling.

So - curious what any of you would be inclined to do?
 

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Discussion Starter · #6 ·
Lovlkn: Been trying to reply directly to you but this web page isn't allowing me to quote you. Anyway, as an answer about my labs, here is a history of my results:
 

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Discussion Starter · #7 ·
Lovlkn: Been trying to reply directly to you but this web page isn't allowing me to quote you. Anyway, as an answer about my labs, here is a history of my results:
 

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Yes... The website is having some issues, I will report yours.

Can you please provide the ranges for your T3, FT-3 and FT-4 please in this format.

TSH ( 0.358 UIU/mL - 3.740 UIU/mL)

Your current labs are extremely hypo.

What were your doses prior to the labs drawn on 3/7/18?
 
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