So after running around in circles for the last year and a half on different meds and doses – and only feeling more tired and gaining more weight – my doctor decided that maybe the answer isn't more, but less. Here are my last test results after 9 weeks on Levoxyl 150mcgs:
TSH 1.260 (0.450 – 4.5)
FT4 1.71 (0.82 – 1.77)
FT3 3.5 (2.0 – 4.4)
Everyone told me these numbers are great... but I don't feel great. I have no energy, and I can't lose a single pound. I almost feel like I'm not even taking thyroid replacement meds. The theory is I could be dealing with a Reverse T3 issue from that high-ish T4. So, the doctor has cut me back to around 128mcgs a day (by halving my normal 150mcgs two days a week). The hope is that I'll feel better when that T4 drops down a bit (looking back, I did feel best with a T4 around 1.2 - 1.4).
My question: Does this make sense? I'm terrified that I'll be even more tired and gain more weight -- something I cannot afford. Adding T3 really isn't an option, because I don't respond well to it. It makes me blow up like a pufferfish.
Any and all insight would be greatly appreciated.
Best,
Hypoguy
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Hypoguy
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Hypoguy, I wonder why your doctor didn't order a rT3 test to check level before reducing dose? Nevertheless, if you felt better with lower FT4 it's worth trying the lower dose.
Have ferritin, vitamin D, B12 and folate been tested? Low/deficient levels can cause musculoskeletal pain, fatigue and low mood similar to hypothyroid symptoms. Good levels of ferritin aid absorption of Levothyroxine and good vitD levels aid conversion of T4 to T3.
I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
rT3 has been high in the past, so she felt confident that I should try the reduced dose. She said it would be a safe test. My question is, will this reduction help the rT3 issue? Or will I just end up more tired and fatter?
Hypoguy, I doubt the reduction is enough to clear rT3. A rT3 test seems worth doing to establish whether that is the problem before you take steps to clear rT3.
Okay. I think I'll know pretty soon how this reduction is going to make me feel, and from there I can test rT3 and look into steps to clear it.
I don't know if it'll stick, but so far I have felt much better on the reduced dose. I feel like a cloud lifted a bit. Hope it lasts, but it's only been a week.
Hi Hypo, The adrenal gland attempts to slow down the thyroid using reverse T3 if you have too much stress. One of the stressors can actually be too much thyroid hormone.
I found this on Dr. Lam which explains what I was trying to say earlier:
When the adrenals are exhausted, the ability of the adrenals to handle the stress associated with normal bodily functions and energy requirements is often compromised. To enhance survival, the adrenals force a down-regulation of energy production. In other words, the body is being metabolic down-regulated to slow down in order to conserve energy as the body needs to rest. Lower energy output reduces the workload of the body. In times of stress, this is exactly what the body wants. As the thyroid down-regulates, production of thyroid hormones T4 and T3 is reduced. The down-regulation also leads to an increase in thyroid binding globulin (TBG) level. As a result of increased TBG, more thyroid hormones are bounded on a relative basis and less is released to the body cells where they work. This leads to reduced free T4 and free T3 levels in the blood if measured (while total T3 and T4 levels may be normal). In this well orchestrated systemic down-regulation to enhance survival, the body also shunts some of the available T4 towards the production of the inactive reverse T3 (rT3) which acts as a braking system and opposes the function of T3. This reduction in T3 combined with an increase in rT3 may persist even after the stress has passed and cortisol levels have returned to normal. Furthermore, rT3 itself may also inhibit the conversion of T4 to T3 and may perpetuate the production of the inactive rT3. If the proportion of rT3 dominates, then it will antagonize T3 and possibly leading to a state called rT3 dominance. This results in hypothyroid symptoms despite sufficient circulating levels of T4 and T3. The body therefore has multiple pathways to down-regulate energy production to enhance survival under the direction of the adrenal glands. - See more at: drlam.com/blog/adrenal-fati...
Heloise –- Thank you for this info! It begs the question though, and it's the million dollar question... how do you solve a ReverseT3 problem? I can't find any reliable information on this. It seems nobody agrees. I feel more lost than ever when it comes to RT3 issues. Hoping that reducing my Levoxyl will be a step in the right direction.
Hypoguy, you could try GreyGoose's suggestion but keep in mind we always have some reverse T3. It's there for the body's intelligent reason for it. The ratio should be 20:1. stopthethyroidmadness.com/r...
Grey also suggests you may have nutritional deficiencies which I agree that once your metabolism slows down for whatever reason, your digestion will be off, stomach acid becomes low, can't demineralize anything and amino acids don't breakdown and cause all sorts of problems. Then low B12 ruins your nervous system with its contributions. I didn't even realize how destructive hypothyroidism was after many years.
And then there is the adrenal's action so you might need to treat the adrenal glands. Two ways to do it and you should find out whether you need to stimulate them (licorice root, siberian ginsing, adrenal glandulars) or to support them with low dose hydrocortisone. A saliva test lets you see the active cortisol levels and figure that out.
This video is about testosterone since I see the other guy has weighed in (below) and Dr. Clark gives 24 reasons for low thyroid. If you get something from this five minute video, look up the rest at you tube. Dr. Bergman is very definitive though.
I just wanted to add, in the second video which is not much different after the first two mins. of the first one, he talks about sleuth infections. This is my new interest though I have no training I like reading about it. These infections can set up in the body possibly through leaky gut and antibiotics do not kill them. They are also called biofilm or cell wall deficient bacteria. I am thinking it can cause all sorts of chronic conditions including thyroid and would explain a lot. I'm sure it is way too complicated for a GP or endocrinologist as they don't even seem to understand the basics.
Hypoguy, I might be wide of the mark here, but my own experience as a 47 year old male (diagnosed hypo at age 34) is that I can only tolerate, and only benefit from, thyroxine when I also take tribulus terristris (to boost the body's testosterone production) and letrozole (or anastrazole or danazol) to inhibit its conversion to oestrogen.
I have found this by trying anything which I thought would help, not by asking my doctor - all he would do, as in your case, is tinker with the thyroxine dose, and refuse to investigate further.
Also, did you supplement with DHEA as Eddie83 suggested to you in a previous reply? Did that help at all?
Again, I might be wide of the mark, but if I were in your shoes (as I was in 2002-2003), I'd give anything a go.
Interesting. I'm honestly open to trying pretty much anything.
I did end up trying a low dose of DHEA for about two weeks, but my doctor said it could cause problems, so I stopped. I really didn't notice much, but I realize I wasn't on it for very long.
If you have reverse T3 then the only answer (to my thinking) is T3. The answer is never lower and I suspect the doctor has lowered your meds based on the 'suppressed' TSH not any other results. You could have done it yourself and had no problems with dosage as its easy to control how much you take rayther than let someone else controlit.
The doctor decided to reduce the dose because looking back, my problems really started when I began to increase my dose. Strangely, I felt best, and was at my fittest ever, when my TSH was around 1.8, my FT4 was around 1.2 - 1.4 and my FT3 was a 3.3. I know many people would feel horrible with those numbers, but I had energy and I was happy. So the reduction isn't a shot in the dark, we were looking at past numbers to see if the increases were the problem in the first place.
That said, I may not continue to feel well on the reduced dose, in which case I will investigate rT3 issues and the use of T3 further.
The only way I know of getting rid of that rT3 is to go off T4 completely, and take a high dose of T3 - flood the receptors - for about 12 weeks. That's what I did.
And, during that time, you work on your nutritional deficiencies - bet you have some! Get tested for :
vit D
vit B12
folate
iron
ferritin
And work up from there. No hormone can work if you have nutritional deficiencies.
Just keep lowering the T4 is not going to work, because you're just going to end up with not enough of anything. I really Don't understand your doctor's reasoning here. Actually, I suspect she doesn't have any reasoning, but is just trying to make it look like she's doing something!
Hi greygoose -- Thank you for the response. I've read about the use of T3 to fix rT3, but for every source that says it's the only way to clear receptors, there's another source that says there's no scientific evidence to support the protocol. Obviously you had success, so there is anecdotal evidence, and I'm not disagreeing with you. It just makes it difficult to know who to listen to! It makes me nervous that I would probably have to do this without my doctor's support -- seems risky. There's also the fact that T3 just made me feel awful when I took it (obviously I was still taking T4 though).
So far I feel much better on this reduced dose, but if things begin to slide, I think looking at T3-only is going to have to be my next step. Have you remained on T3-only, or did you reintroduce T4?
I was on NDT, and very ill, so thought it must be rT3. I did the T3 protocol and felt great. Went back on to NDT and started getting ill again. So, now I'm on T3 only.
As with all things thyroidian, the only way to know if something works with you is to try it. There are no guarantees.
Why do you think it's risky to try detoxing rT3 without your doctor? Do you think your doctor knows anything about it? I very much doubt it. lol So, what's the worse that can happen? You over-dose? So, you just go back down again. No lasting damage.
Obviously if you stay on a dose that's too high for you for too long, it can affect your heart, but I think you'd know it was too high long before it got to that stage.
How much T3 were you taking when it made you bad? And how much T4?
When I took T3, I was only taking 10mcgs (5 in the morning, and 5 in the afternoon). I was taking 125mcgs of Synthroid at the time. I blew up like a pufferfish. I was also put on WP Thyroid 2 grains + 75mcgs Levoxyl -- that also made me blow up. I think the clear through-line here is that too much medicine wreaks havoc on my system.
Right. Too much replacement hormone I should have said.
Levo only caused different symptoms -- headache, depression, sometimes bloating, but I now think that had more to do with the Synthroid brand and fillers. I'm not having those issues with Levoxyl it seems. It's too early to tell if the reduction is going to be the right move, but I will say that a lot of my fluid retention has completely flushed away. I have more energy already. Only been a week though.
Hmmm so it could be the fillers then, not the hormone itself. Do you know what the fillers are in Levoxyl? Can you compare them to different brands of NDT and T3. If you could find one that matches, that might work for you.
YES, hypoguy, it does make sense. My lovely new GP, first time she saw me, cut my dose of Levothyroxine to almost half and I am the best I have been for around 30 years! Now nearly a year on weight is just coming off although I eat enough to satisfy hunger (that's new!).
My own theory is that when we are on too much Levothyroxine our body produces less of its own thyroxine (because of that feedback loop telling the pitiuitary gland there is plenty of circulating thyroxine) and then because some bodies are not good at doing the T4 to T3 conversion with synthetic thyroxine, we have insufficient T3, hence the symptoms.
That's only a theory, no idea if it stands up.
I hope you have the same improvement as me, can you now relax and wait and see?
Update: After a week and a half, I feel pretty good. Better overall. More energy overall. I do notice that I feel worse on the days that I take the full 150mcgs – especially after the second or third day taking the higher dose. I think the sooner I can switch to taking actual 125mcg pills, the better. I know with the long half-life that it's essentially the same, but my body doesn't seem to like it.
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