HI! Am new here... I've been on 1 grain Nature Throid and 50 mcg of compounded cytomel for about three months. I know for a fact I respond terribly (instant weight gain, fibro pain, etc...) right away when I up the NT or take ANY T4 at all (only good thing is that my eyebrows start growing in, but not worth it ;-). Same thing happens when I up any iodine. My new Dr suggested getting rid of the NT/T4 and bumping up immediately to time release T3 to 75mcg, and 2 weeks later going to 100mcg assuming I feel okay. I am scared b/c I am working on Adrenals (also, zinc is quite low, and Iodine is quite low) and my TSH is already .01 and my T4s are all LOW in the labs (RT3 is also low though, so go figure!). What will happen to the T4 levels whenI up the T3, and I swear it will look like i am dead on paper! All the info I find is about how the TSH is high and i would love to hear any real stories from people about their experience shifting to high doses of cytomel/T3. My symptoms are weight gain, dry skin, puffy face and tons of water retention, SIBO, eyebrows falling out, etc... TIA!
hi again Can you put your lab test results on the post too? There's a button you can click on under the post that allows you to edit your original post.
I took 75 mcg T3 only for about four years. Before that, I went up to 225 mcg; before that I was on NDT, going back even further T4+T3, and I started on T4 only. And, I thought the same as you : I couldn't tolerate any T4.
Fast forward 17.5 years, and I find I can now lower my T3 to 62.5 mcg and add in 50 mcg T4 without any ill effects. Whether there are any advantages to that, I've yet to discover. So, what exactly is your question about high doses of T3?
my T4s are all LOW in the labs (RT3 is also low though, so go figure!).
Well, it would be. High rT3 is caused by high levels of FT4 (among other things) not low levels.
Are you taking selenium with your iodine? You really shouldn't be taking iodine without optimal selenium. Is your doctor following your supplementation with iodine? Does he really know what he's doing? It's not something to be under-taken lightly, even if you do have low levels of iodine.
Were those labs done on T4 only? Or NDT? Your FT3 is already over-range. Is your doctor sure you need even more?
Than you so much! Those labs were done on 1 grain NDT, and 50 mcg compounded T3. I had been on 50 for months and months before, but not compounded and my numbers were usually in the bottom quartile.
No real questions - just wanted to see people's experiences. I have only read about instances where people were tested and not on meds yet, so their TSH was high. I wanted to know if people were already on meds like me, and how they were feeling/what their numbers looked like, so I could compare apples to apples.
I chose to try the iodine on my own b/c my former Dr didn't want to. I was only using ONE drop of nascent iodine (maybe 150mcg?) every other day and gained 8 pounds in 3 weeks! I was taking Selenium, B vitamins, Vit. D, Vitamin C and whatever else was suggested. I had tried salt loading but couldn't bear it b/c I bloated up so fast, so I have been trying the adrenal cocktail with Potassium Chloride to no avail.
Sorry! The comment about the RT3 was for ShinyB in my original note to her b/c i have all the symptoms for RT3, but of course I don't actually have high RT3. I hope I can add T4, b/c am afraid it will (if possible) drop further!
My new Dr specializes in fertility and female hormones and thyroid. He said he really wants to look at my symptoms over my labs. He is checking my Pregnenolone and DHEA (both which have bene quite low in the past)... believe me, I don't want to be on any meds as I am very holistic in nature, but I just want to see if this helps b/c I cannot keep going on like this. I am just skeptical b/c of everything all my drs were worried about, but I am also hopeful.
I haven't had a blood test since 2014, when I walked out on my last GP before it came to blows (he tried to tell me that women don't have testosterone!!!), but I could look up the old results if it's of any interest to you.
What do you call 'high rT3 symptoms'? As far as we know, rT3 doesn't cause any symptoms, it's inactive. And, it only stays around for a couple of hours before it's converted to T2.
I hope I can add T4, b/c am afraid it will (if possible) drop further!
It's hardly surprising that your FT4 is low, but it isn't necessarily a problem. Lots of people do very well on T3 only with zero T4. I was quite happy on T3 only, I just added in T4 as an experiment. Before that, it was zero for years. The thing is, we don't really know if T4 does anything except act as a storage hormone. I wanted to find out if it had anything extra to offer. So far, it hasn't. But, I've only just increased it to 50 from 25 mcg. So the extra hasn't had time to do anything, yet.
150 mcg iodine isn't negligeable, given that you will also be getting iodine from NDT/T3. You will be getting 29 mcg iodine from 1 grain of NDT (approx.) and about 24.50 mcg iodine from 50 mcg T3. That makes a total of 203.5 mcg iodine on the days you take extra, plus what you get from your food. Excess iodine will act as anti-thyroid, making you worse.
I absolutely believe you don't want to be on 'meds'. So stop thinking of thyroid hormone replacement as 'meds'. They are just replacing the hormone your thyroid can no-longer make enough of. You can only replace a hormone with a hormone, nothing else. But, one has to be realistic, and not take too much. And the problem of dosing by symptoms is that they can often be misleading. So many symptoms cross over from hypo to hyper that we need the labs as a guide. We have to be vigilant.
Morning from Brooklyn! I mean if you have any results worth looking for, sure! And I am on my 5th Endo is as many years. It is AS IF THEY ARE TRYING TO KILL US INSTEAD OF SAVE US?!?!
Do you think I have Peripheral resistance to thyroid? What would CAUSE that though? We only know that my grandmother had thyroid issues, but the rest of the family problems were heart related (I mean, hello!?!) and psoriasis. Actually, that Grandmother had a pacemaker... interesting! I only just found out that she took meds about a year ago when my dad very passively mentioned it.
Can I ask why you had wanted to add the T4? So we really don't need ANY if we are on enough T3?
RE: iodine - My Dr actually did the Thyroflex test which showed I was pretty Hypo, but it also showed adequate Iodine, which is interesting b/c my blood tests were so low. I know the blood is not the way to test bc the levels change very quickly, but still! That is fascinating - who knew I was getting that much iodine. New Dr didn't believe in the high dosing, and I will leave at there for now. He specializes in fertility and thyroid, so I am just so happy someone will look at my hormone results and actually determine something for once! Usually it's just "oh, you're in range"... Argh.
It's funny I have had issues since I can remember - basically since puberty - but everything really kicked in once I had my daughter 11 years ago, and again after I had my son, and i thought maybe I caused it by trying so many different things to just "feel normal". I guess that's why I say I don't want to be on meds b/c I feel like it is just something I can reverse, but I guess not! Thank you so much again!
I will have a look for my results, they're around here somewhere! One does get the impression they're trying to kill us, sometimes, but I think it's just pure ignorance.
You could have peripheral resistance to thyroid hormone - I think I do, too. But I don't know of any way to test for it. And, I've no idea what would cause it. Perhaps being undiagnosed for a long, long time. That has to have some effect. There is a book about that :
I really don't think that anything you did caused your thyroid problems - I had the same thoughts, but a very nice nutritionist reassure me that it was nothing I'd done - she knew more about it than any doctor I've seen! But, I don't think you can reverse it, either, I'm afraid.
Thank you! It is just AMAZING!! It isn't even my full time job (although it feels like it!) to research these things and they seem completely oblivious to anything other than the little tests they do! I am feeling hopeful about my new Dr - i actually found him from an interview he did on the Stop the Thyroid Madness website - and he happened to be in NY, AND is covered under my insurance! We'll see! Will look at that book I'll make notes about the peripheral resistance and ask him!
I have been gluten and dairy free (well, I eat some cheeses, but only if they don't bother my stomach!) for almost 6 years now - we eat 95% organic, i cook almost all of our meals, i follow Paleo (albeit loosely) - if I am not self correcting it with all that, I guess it isn't reversible! I did note that too many grains make me have tremendous joint pain and how i had most of the Fibro spots, but not all of them so they didn't look further into that - and the Dr got really upset about the Fibromyalgia commercials out there saying "Those make me so mad! It's their thyroid!!"!
I am so glad I found this site b/c my Facebook STTMs shut down... and this way less stickler anyway!! TY again so much!
Haha! Omg we have the MOST depressing commercials here! "If you take this, you may have such side effects as: perpetual ringing in ears for life, loss of a limb, having a baby with two heads..."
I take 150mg of T3 as Tiromel. Normally all symptoms have gone, but I am not great at the moment, but that could be due to low cortisol, for which I am being tested (and could be why I take so much T3). I don't know if it is always the adrenals that cause the low cortisol though (HTPA).
I just wanted to recommend Paul Robinson's book 'Recovering with T3' if you haven't already come across it. (Although you seem to be pretty knowledgable anyway!)
Thank you Piggie Sue! RE: cortisol - I think that is my fear, although I am obsessively trying to raise my cortisol... am afraid and extra 25 mcg will push me over the edge in terms of adrenals... I will definitely look into his book. I know I have been on his website!
Have you had the 24h cortisol saliva test? The one from blood is useless. Also what’s your iron like? Any other vitamins checked? D? Could be a problem at cellular level and some gut issues ( you already mentioned SIBO)
Thank you - yes, so my D is always on the low side. It takes a LOT to keep it at 40... I have the VDR Taq +/+ so that works against me! I have done the four point test a handful of times. The last results maybe a 6 months ago showed low across the board, so I am just assuming i am low, not high. My stomach actually got SO much better when I took Iodine for a few weeks, and I am still feeling SO much better gut wise. My weight hasn't shifted though after gaining 8 pounds in 3 weeks though so that is a complete bummer. I did Keto last summer and didn't lose much weight, but i was significantly less bloated and my skin looked great, until it looked AWFUL b/c my liver conked out on me Iron was a 90 (Range 40-190) so I have been eating a bit more red meat... I think my MTHFR status makes my iron go a little wonky. Sometimes it is really high (without supplementation) and sometimes it is what it was this last time. Ferritin is usually 70-80...
Hmmm... I also had an episode with Iodine which made me gain weight so I know what you mean! Bummer indeed. I also have low zinc and I know this is an issue with cellular absorption so working on it. Maybe look into pooling... although you did not mention any palps etc
Right, so when I saw that my FT3 was raining finally with the 50 mcg of compounded T3, i was worried I was pooling? But I don't have palps, only some air hunger but then I take a adrenal supplement or it might be time for my T3 (Drs used to NEVER get that i would have to take T3 to get RID of shakiness! lol!). I am trying to take meds at exact same time each day now, which might help. Also, my time released T3 is meant to be delivered today, so I am hoping I see something shift soon! I hope the Dr is right
Your low cortisol can be behind this. Cortisol, iron and rT3 have to be optimal for T3 to work at cellular level that is why I am hesitant to go on T3 only despite my high RT3. Argh why is this so complicated?! ☺️
I swear! Well, at least my RT3 is low! I cut back on NDT and upped the T3 and it worked... did you try that? I didn't feel much different but my numbers adjusted.
In 2018, I did well on 75 mcg 2 x per day, but in the fall/winter, I was on 90 mcg 2 x per day of T3 only, no hyper symptoms. I did really well, but then gained a few pounds after a stressful move and had to take 200 mcg in 2 split doses. I learned that eating well is so important, as the disease progresses, one will end up needing more medication. I’ve taken up to 300 mcg with no ill effects, I definitely have more of an unusual case I think. I’ve heard of a doctor who was on 400 mcg of T3 mono-therapy. The amount I’ve taken can be fatal for some, so be a cautious.
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Can you put your lab test results on the post too? There's a button you can click on under the post that allows you to edit your original post.
I'll make notes about the peripheral resistance and ask him!
Iron was a 90 (Range 40-190) so I have been eating a bit more red meat... I think my MTHFR status makes my iron go a little wonky. Sometimes it is really high (without supplementation) and sometimes it is what it was this last time. Ferritin is usually 70-80...
Help interpreting blood test results
Need help with test results
Possible secondary hypothyroidism (Levels are standard not metric).
Thyroid Test
Advice on dosing
