My medication saga is a long and winding road of curves, hills and numerous crashes. Some days when things are crappy I think that I will never get it right, other times I’m so full of hope and think that I have finally cracked the code and found my magic dose. It is definitely a path of emotional ups and downs.
I’ve tried numerous thyroid medications, doses and dose times. More than I care to admit but, I’ve learned from them all. My intention for this post is just to hit the highlights of each and hopefully you can gain something from my trial and error.
My personal stats: I’m 54 years old – total thyroidectomy – post menopausal – Hashimoto’s/Lupus -currently on T4/T3 combo therapy (Levothyroxine/Liothyronine)
T4 only: Synthroid and Levothyroxine
I took Levothyroxine for years and did ok. For most of that time I was on 137-175 mcgs. I ended my affair with T4 mono on a 175 mcgs dose where I was very overmedicated at the beginning of peri-menopause.
T4 mono was ok for the beginning of my journey. I always had some lingering anxiety and sometimes just felt unwell. But, most of the time I functioned normally and kept up with my 3 kids, work and life in general. Towards the end when I was taking 175 mcgs I had a FT4 above range and my FT3 was just below mid-range. I was also taking Lexapro (SSRI) to counteract the anxiety that came with high FT4. My legs and especially my feet hurt daily. I wore crocs from the time I woke up until I went to bed because I needed the support, definitely not a fashion statement. I now know that it was my high FT4 that caused my sore feet and legs.
In desperation, I’ve tried a few times in the past 6 years to go back to T4 only but my efforts have failed miserably. The first time I tried 88 mcgs and then I tried again with 110 mcgs. Both resulted in a high FT4 and a bottom of the range FT3. During these brief T4 only trials it didn’t take long for the depression and anxiety to move in. I just don’t convert enough T4 to T3 and I definitely can’t compensate for that by taking a high dose of T4 anymore.
T4 only works good for some. I personally haven’t met a menopausal women without a thyroid taking just Synthroid or Levothyroxine that feels well, but I am sure there are some. Some people have super powers in the T4/T3 conversion department and can sustain a decent FT3 on T4 only. Again, everyone is unique in regards to thyroid meds so don’t discount Synthroid or Levothyroxine just because it no longer works for me.
NDT (natural desiccated thyroid) Armour, NP Thyroid, Efra
NDT is the O.G. of thyroid replacement medication. NDT was the medication given before levothyroxine came onto the market. It comes from pig’s thyroid glands and contains both thyroxine (T4) and tri-iodothyronine (T3), although it has more T3 than the human thyroid produces. NDT comes in grains. Generally, 1 grain is 60mcg and contains 38mcg of T4 and 9mcg of T3. If you would like to read more about NDT and a summary of a study comparing NDT to Levothyroxine you can visit this page from the American Thyroid Association.
I have tried NDT twice in the last 6 years. The first time (six years ago) I took Nature Throid. Unfortunately, it isn’t on the market anymore and I don’t think that it will be back any time soon. My switch to NDT was a game changer, even though it started and ended poorly. It was the most glorious 6 months I’ve ever had. I think because it was the first time that I felt what a lower FT4 feels like. I went barefoot that whole six months, just because I could! No achy feet or legs and I felt so calm.
The beginning adjustment period was a little rough at first but that all passed within a few weeks. I went from 175 mcgs of Levo one day to 1 1/2 grains of Nature Throid the next. Not smart. But, you don’t know what you don’t know. I also took my whole dose in the morning! Again, I didn’t know any better and neither did my doctor at the time. So, the first few weeks of adding that much T3 (13.5 mcgs) to a FT4 at 110% of range was not fun. But things did straighten out and I felt great for the next 4 months. I had labs done after 6 weeks and my levels looked ok, my FT3 was around mid-range and my FT4 was about 30%. I also want to add here that I had no idea how to prepare for bloodwork at this time, so I don’t know when my labs were drawn in relation to my morning dose. Live and learn.
After those first labs at 6 weeks, I went all summer feeling like a new calm and collected woman. But…. after about 4 months I started noticing that I was gaining weight and I just didn’t have the energy/motivation that I once had. I don’t remember being overly worried about it, but it was happening. And as you can probably guess, things imploded there shortly after.
I went to the doctor’s for 6 month labs and they were shocking. My T4 was very bottom of the range 0%, my FT3 was 53% of range and my TSH was 4.32. After seeing my labs my doctor told me to increase my NDT to 2 grains. Sounds simple enough. Well, that was a bust. I couldn’t handle that much T3 (18 mcgs), especially since I was taking my whole dose in the morning. I had no idea that it was recommended to split the dose. The new increased dose of NDT made me sweaty, shaky and overall unwell feeling. During this time also, the Nature Throid recall was occurring. It was getting harder to find and I was calling around to pharmacy’s to see who still had some in stock. With all of that, the way I was feeling and my recent labs, my doctor decided it was best if I went to combination therapy T4/T3. She put me back on my old dose of 175 mcgs of Levo and added 5 mcgs of Liothyronine. This was a recipe for disaster and a story for another time!
The second time I tried NDT was about a year after the first. I was still chasing that low T4 zen that I had the first time I tried it. This time I had a new doctor and he prescribed 90 mcgs ( 1 1/2 grains) of Armour. It was a disaster right from the beginning. I was anxious, hot, sweaty, short of breath and just an overall mess. I couldn’t increase my dose so I was stuck at 90 mcgs. But this time I did know to split my dose. I was taking half in the morning and half in the afternoon. It didn’t really matter. It all still felt terrible. My perseverance or most likely stubbornness to make it work, kept me on this path for almost 5 months. Again with the same results, 0% FT4 about 50% FT3 and this time a TSH of 5.16.
I’ve never been able to recreate that calm and motivated feeling that I had on NDT the first time. Maybe it was the Nature Throid itself? Maybe I could have made it work, knowing what I know now about splitting doses? I’ll never know, but those are my experiences with two types of NDT. I think in the end, it just has too much T3 and too little T4 for me. But, a lot of people love it and think that “natural” is the only way to go. I’m glad we have options but NDT probably isn’t an option for me, but it might be for you.
Combination Therapy T4/T3
Wow, this part could get long winded so I will try to keep it brief. I don’t think that there are many combinations that I haven’t tried. For the T4, usually Levo but occasionally Synthroid, I have taken 75 mcgs through 100 mcgs. pretty much hitting every number in between. For the T3, I’ve only ever taken generic Liothyronine and I’ve tried doses between 2.5 and 12.5.
I generally take my T3 in three divided doses (currently 3.75/3.75/2.5) and my T4 in the morning well before food or drink. I’ve tried various T3 dosing times over the years and usually end up back at morning, afternoon (2 pm) and a small bedtime dose. Of course, I have played around with adjusting this but I always seem to come back to it. Recently I also tried Paul Robinson’s CT3 method. (more about that in an upcoming post!) When I was new to T3 I took it with food and found it easier to handle the post dose peak. Now days, my morning and bedtime dose is on an empty stomach but my afternoon dose, I don’t pay much attention to having an empty stomach. I’ve also briefly tried taking my T4 before bed but bailed on that for reasons I can’t remember.
For me, taking combo therapy is like chasing my tail. It has been a constant merry go round of doses trying to find the dose that puts my FT3 at about 50% and my FT4 40-50%. At least that’s where I think I will find wellness. Sounds easy when I write that out, but let me assure you it has been a monumental undertaking thus far.
What I am doing now
Right now I am about 10 days into a T4 dose decrease, going from 88 to 78.5. My last FT4 labs were at 67% and that is too high for my liking. I am also 24 days into a T3 increase. My last FT3 labs were at 42%. My current combo dose is 78.5/10. It’s been a rocky road because I played around all last summer and fall increasing my T4, hoping to squeeze out some additional T3 via conversion. I tried 92.5, 94 and even 100 mcgs of T4 with a T3 dose between (6.25 and 12.5). Unfortunately, it all came crashing down at the end of November. It has been a terrible winter for me and I’ve been trying to right this ship ever since.
I think that about sums up my thyroid medication follies up until now, but stay tuned for more. If you would like to see my lab results and notes from the last 5 years you can view them here.
What have you tried and what is working for you?
Because this is a chronological blog you guys get to experience our failures and successes in a time stamped fashion. We hope that this will enable our readers to learn from our past experiences, symptoms and screw ups, while gaining knowledge from what we have been through.
Please always keep in mind that our posts are written from our experiences. We too are always learning, reading, researching and trying to figure out the needs of our bodies. Sometimes what we say in our posts changes over time: we do more research or we have settled into a dose that we thought was right but now just isn’t. Things change…. and so do we!
Leave a Reply