Hello. Writing an update for those interested in T3 only experiences and struggles. About three weeks ago I started T3 only. I had low storage of T4 so I skipped my morning dose of Levothyroxine and started 25mcg of T3 before bed that evening. Had I been on my usual dose of Levo for several months/years as I had for the previous 10 years then I would have skipped the Levo for a longer period before starting the T3.
At first I took off like a racehorse upping from 25mcg of T3 to 50mcg but then backed down to 30mcg and waited for the usual hypo symptoms and T4 to deplete. In the 3rd week I went up to 50mcg. I'm still feeling quite hypo but this is more tolerable than how I felt on T4/T3 combo or NDT and the myriad of symptoms on T4 only.
Some of the struggles I've experienced going T3 only are blood sugar problems. On 30mcg I was waking around 2am-4am with blood sugar problems and felt like my stomach was eating itself alive. It's gotten better since increasing. When my T3 is low it elevates my blood fasting glucose levels. Most importantly I've been making a large effort to eat enough calories daily, specifically good carbs.
I've been tracking my temperature and heart rate. Resting heart rate has been elevated into the 90s at times and around 100-105 in the mornings when my T3 is low. Not sure if it's due to blood sugar or low T3 causing stressy sleep. I feel good when I take the T3 close together in the morning but it tapers off and start to feel tired so I've come up with a dosing schedule 4 times a day at 11pm, 7am, 12pm, and 6pm, thanks to some T3 circadian examples on thyroidpatients.ca . Possibly at some point I can move to 2 doses per day as long as my heart rate stays in an optimal range.
To sum up my experience over this three weeks I'm still having hypo symptoms but my mood is improved, I'm not dragging my body and for the first time in ten years my body temperature is optimal.
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jrbarnes
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It sounds as if you are doing very well and in just a matter of weeks. I don't know how quickly mitochondria recover and receptors open but I'm sure that needs time. Forefront Health states a pulse rate of 80 or more helps with circulation. Is your temperature over 98? That would be very good. There is going to be a replay of the Mitochondria Summit and all talks will be open for viewing for the weekend. Many of these interviews were excellent on a variety of topics centering on our mitochondria. I'll post a link later if you are interested.
Thank you. I think once I raise my T3 enough I should improve. One day I took 75mcg closer together and felt much better but then it tapered off quickly so that's why I'm trying split doses, however starting with 50mcg split but definitely feel very hypo. I have some labs ordered but trying to wait a week after being on the split dose schedule. Yes, I'm happy my body temp is on average 98-98.2, except for in the morning it's 97.1 so hopefully adding a night time dose will bring it up. Send the link my way.
I've been trying to figure out when T3 is highest when your own gland produces hormone. I know your brain needs a lot of T3 and it works harder when you are sleeping. I take my T3 at bedtime. Do you think it might make a difference if you took part of your dose at night. It's just trial and error I guess. Yes, don't rush tests. Give your body a chance to revise. Can your doctor do the reflex test? There was a great interview in that mito summit regarding tests we don't usually get. The metabolic resting state measure 02 in CO2 out. That's oxygen in and carbon dioxide out. You wear a mask to do it. That was Jeff Gladden's interview.
My previous GP did the reflex test and hooked me up to one of those ekg machines during my annual because he always said my T4 was high even though it was in range and my ft3 was only 2.6 and total t3 was 76. My sleep has been very poor so I've moved my largest dose at bedtime and if I increase I'll probably add it to the bedtime dose. I've looked at some T3 peak charts online and if I recall it's at midnight then tapers off around 9 to 10am. I might have to move my night dose to 8 or 9pm. My new dose schedule is 25mcg at 11pm, 6.25mcg at 7am, 6.25mcg at 12pm then 12.5mcg at 6pm. Building up night time T3 and a few smaller doses in the day. 3-5pm is the lowest point for T3 levels.
My first searches about thyroid twenty years ago came from Dr. John Lowe and Mary Shomon. He fought for the right to get T3 and developed a bovine NDT so patients could have access. He also recommended taking T3 in one dose. I'm not sure of all the arguments in favor of that or why people think they need to split it. If you google Dr. John C. Lowe there are many links on his theories. He himself took 150 mcgs of T3.
Did your doctor feel your reflex was good? It always irritates me when they do these exams and then explain nothing. Your doctor sounds exceptional though. You have to get your sleep though and figure out why you are not. Also, did he feel you had a conversion problem which is the question when T4 appears higher when compared to the FT3 result during the same test.
My previous GP always did the reflex test but never explained anything. He wasn't a good doctor and kept trying to lower my Levo, as if that would work magic. He didn't compare past results with current to see that I had to be dose over the range just to get T3 up to 70%, which wasn't enough. His plan was to reduce from 88mcg to 75mcg. I had half my thyroid removed and after 10 years on Levo my thyroid no longer produces any hormone.
My labs on Levo have always been predictable and extremely sensitive to the slightest drop in T4. With each drop in my T4 levels it did not improve my T3 levels. When I mentioned conversion and pointed out that my FT3 levels were low despite FT4 at 1.7 and total T3 was at the very bottom of the range he did understand that conversion happens at a cellular level, although this didn't happen until after 4 years of suffering. At this point he referred me to an endo. There was no way I was going to see an endo as I'd already seen 3. That's when I found my current FNP, who has hypo and previously took T3 only.
It's possible when I get to a higher amount of T3 or after a stretch of time I may be able to take it once a day. Currently, if I take it all at once I'm tired in about 6 hours but again that's most likely because I'm not taking enough. How do you feel about compounded slow release T3?
Your story is pretty common. I know the individuality of metabolism makes it very difficult to treat. I assume a lot goes on during the digestive process and liver and bloodstream depending on everyone's genetics. I question your T4 sensitivity when the half life is two weeks but believe something happens when you change doses. Deiodinase is interesting and has effects.
"Deiodinase enzymes regulate the intracellular availability of TH. Deiodinases are membrane-bound selenocysteine-containing enzymes that can amplify or reduce T3 by the removal of an iodine atom. Within the nervous system, two deiodinases function to control TH bioavailability." The MTHFR factor or too many estrogen metabolites and even insulin resistance may ALL affect the process. Complicated!
oh, I mean sensitive to T4 in regards to the differences in potency and bioavailability between generics and brands. Over a course of three months, after my pharmacy switched generics on me, my T4 levels dropped from 1.94 to 1.77. That took me from functional to suffering. It dropped my FT3 from 3.8 to 2.6.
There are other relevant and useful measures, though, such as the basal body temperature, basal pulse rate, body weight, and perhaps the voltage of the R-wave on ones ECGs/EKGs.According to Dr. Lowe, achieving optimal therapeutic results for many patients depends on them rejecting T4 replacement. Says Dr. Lowe:
Dr. John Lowe was a long-time thyroid and fibromyalgia researcher and practitioner, and Editor of the journal “Thyroid Science.” Dr. John Lowe’s websites: drlowe.com, thyroidscience.com Source: Email interview with John Lowe December 2010
I currently use body temp, heart rate and blood pressure to track. I've put on a little weight since going all T3 and my temp in the morning has been 97.1, so clearly still hypo.
Did you notice the r-wave remark? A few years ago I had read about it and asked the P.A. to let me know after I had a routine ecg. Dr. Lowe did not like time release T3. It depends on what you think about saturation of T3. He thinks you need to saturate all T3 receptors you can and for the same reason he did not recommend breaking up doses.
I was never showed my results. Typical of doctors. No feedback after doing reflexes and checking heart status. What did they have to say about R-waves because I know nothing about it. People have different opinions about Slow release T3 but I have no experience with it. I noticed that I felt better taking 75mcg of T3 very close together but it didn't last long and became extremely tired by late afternoon early evening. I wonder why that is?
I'm not sure how a lag in the r wave actually affects you but it was there. You'd have to understand the mechanisms but I do think the nervous system, electrical systems, (electrolytes) have something to do with metabolism. How active are you? If you run a marathon you will deplete T3 faster. Now I don't really know but possibly 75 mcgs was just not enough to get you through the day. When that happens your adrenals are going to try to compensate. If your adrenals cannot keep up with cortisol, etc. I can see why you suddenly become extremely tired. It's really your brain that is exhausted according to Dr. Kharrazian.
That's why I didn't want to stay on a low T3 dose because my adrenals kick in to compensate and makes it worse. I used to do light aerobics in the morning up until dec 2019 when things started to go downhill. Now I just go for long walks but I look forward to being more active. I also garden when I can. Gardening helps lower my cortisol levels too.
Gardening is really amazing when you think what happens with that little seed. I miss mine but there were a lot of frustrations like growing to a nice harvest which the woodchuck found delicious, grrr. Yes, get your hands and feet in the dirt! You are trying so hard and I know you will figure it out. Best wishes!
Hi Myish, I know you are new here and want to explain that these summits are only presented for a certain period of time. So that one is over. You can purchase the entire log and view it whenever you want to but you can view all the interviews during the days it is running for free. They have been enormously helpful to me and very successful. Functional medicine is taking hold since they center on looking at cause and effect. One thing of importance with mitochondria (we have thousands in every cell) is that they are fragile and can be blocked by certain oils, i.e. safflower, canola and vegetable oils. This area is still controversial but I can give you some references later. I will also let you know of upcoming summits you may be interested in.
This is the link for the Mitochondria Summit. If you haven't done this before, you may have to sign in. You can choose to watch any or all of them, haha, if you want to live at your pc. mitochondrial.byhealthmeans...
I hope you can catch a few. Mitochondria are keeping us alive! I liked Niki's talk. The fight or flight now adds freeze which is the cell danger she talks about.
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