I'm in the states but you guys seem to know more than community boards here so.I have hypothyroidism, high ft4, low ft3, low tsh. I've been on 120mg Ndt for years. I'm very symptomatic. My new doctor tested my reverse t3 and it's very high and said I'm not converting well and basically overmedicated with t4. He lowered my NDT to 90mg and added 5mcg t3 to start daily. I only started 3 days ago and It has been rough! I have elevated heart rate, resting and moving around, shaky, hot, anxious, ears ringing.
I woke at 4am to take ndt as always and was up an hour later with my heart pounding. My iron levels are good, and if it's my adrenals, I don't know what to do. I haven't even taken t3 today and feel very anxious and hot. Any ideas?
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Dawn733
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Yea, thank you! I wasn't sure if sharing labs was allowed here.TSH 0.116 uiu (0.45-4.5)
Ft3= 2.7 pg (2-4.4)
Ft4 =1.39ng (0.82-1.77)
Rt3= 26.3ng (9.2-24)
Vit.d =69.5ng (30-100)
B12= 1200 pg
Folate= >20ng (>3)
Ferritin 102ng (15-150)
Saturation =18 (15-55%)
Hemoglobin =14.9 (11.1-15.9)
I have been on supplements for deficiencies for 9 months. My starting Ferritin was 10ng, saturation 9, d was 20, b12 was 300, folate 9. So better but not there yet with iron saturation and vitamin d.
Not sure if relevant. Im a perimenopausal woman and I recently started hormone replacement as well. I take 200mg progesterone and will be starting testosterone injections soon.
Progesterone 4.8 (1.8-23.9)
Testosterone 48 (4-50)
Ft 2.7 (0-4.2)
Estradiol 283 (43-211)
The Estradiol fluctuates of course a lot. It was 64 last month.
Your t4 isn’t high. But your t3 is low and so adding 5 of t3 is likely to help as it is the ft3 number that is most directly causal of symptoms.
Dropping NDT by 25% is a standard doctor move when adding t3, although there is some debate as to whether it’s necessary, especially since your t4 isn’t really that high and the t3 will lower it anyway.
It’s not that it take 6-8 weeks to feel better. It takes 6-8 weeks for a change in dosing to settle to a steady level in your blood because The t4 portion of your NDT has a 7 day half. So wait until then for your next blood test.
It could take several 6-8 week dose titration periods until you reach full replacement dose.
Within that 6-8 week period it’s not uncommon for volatility to ramp up through the weeks and many people find week 5 the worst. But every one is different!
As for adding t3,
It’s hard to say what’s causing your issues - the NDT drop, the t3 add or the change up in your HRT.
This is why we recommend only changing one thing at a time so you can isolate the root cause and take more informed action.
When did you change your HRT?
Re iron, do you get an actual Iron result? And what is your supplementing regiment.
Re your b12, are you on injections?
Re D, make sure you take it with mk-7 so it directs to your bones and teeth where it’s needed as opposed to your veins and soft tissues.
You can check your d dose here, a calculator that has worked for many of us.
I have been on the same hrt for a little over 2 months. For iron, yes everything is optimal except my saturation, which is a little low at 18%. I take 100mg heme daily, divided. I'm not on b12 injections, only sublingual, and I ordered some injections but some say my iron sat needs to be over 25%.
I take d with mk4 version of k2 because the. Mk7 made me anxious.
So I saw an endocrinologist who rolled her eyes when I said he put me on extra t3. She said my rt3 is high because my tsh is so suppressed, because I am likely overmedicated with ndt. She said to stop cytomel. Each day once the cytomel wears down, I think I feel a tad better, and I assumed maybe it's the cytomel. I told the endo this and she said it's probably from the lowering of the Armour, and if I quit the cytomel and adjust fully to the 90mg Armour, id probably feel a little better. She wants to test adrenal and cortisol and further check for Pheochromocytoma or similar issues to rule it out. She said if the tests are clear, we need to consider I'm overmedicated and need to get back on synthetic t4 and maybe t3 so we can adjust better. I asked how it's possible to be overmedicated with t4 and t3 that aren't too high and she said if you're overmedicated, it can all become disregulated. She said it's why I feel hypo and hyper symptoms. What do you think? I have to trust her and try what she says because this isn't working. Also she's an MD at Baylor in Houston TX so I would imagine she knows a thing or 2.
The assumption that doctors know anything about thyroid because of the hospital they work at - based on your comments - is proven wrong once again . That explanation of hyper/hypo/disregulated is bonkers. A definite tell.
Pet peeve of mine is saying “over medicated.” Thyroid hormones are not medicine. They are not pharmaceuticals. They are a natural hormone you need to take exogenously because your thyroid is unable to make its own (are you diagnosed Hashimotos?)
Your ft3 is hovering at 20% through range… no wonder you don’t feel great.
In my opinion, you should make your FT3 top priority. No one/few people would feel well with a ft3 that low.
Yes, we are all different. But somehow doctors has zero idea about the role ft3 plays in our bodies and the havoc it causes when we don’t have enough.
I also want to call out your iron - can you actually share your full iron panel - including the actual iron result itself and any other iron-related measures they tested?
100 mgs of heme iron a day is a very high dose... I don’t often see long term supplementation at that level so I’d really hope you are testing that full iron panel frequently?
I’m a little less concerned with that low transferrin sat% that you are approaching toxic iron levels…. But still worried until I see the whole panel.
You probably know that your body has no way to excrete excess iron, it will settle in your organs and soft tissue, accumulate for a lifetime, and ultimately cause permanent, irreversible damage. Iron toxicity is no joke.
Your ferritin jumping looks like success but I would want to know your CRP-hs from the same blood draw.
There is no way to evaluate your iron profile without seeing the full iron panel in context.
There is a lot going on in your story with all the changes you are making.
The most practical advice is to take a step back and tackle these things one at a time.
Only change one thing at a time. Not because you don’t ultimately need all these things. But because if you keep changing too many things up all at once you will never know what is making you feel better or worse.
For example - it is uncommon for mk-7 to cause palps. It is very very very common for changes in thyroid hormone replacement to cause palps (especially in the 6-8 weeks a dose change takes to settle at stable levels in our blood.) It’s also very common for low iron/ferritin to cause palps. So It’s possible mk-7 was the culprit, but not likely, and given all the changes you’ve made overlapping there’s just no way to know.
edit- one more question. How are you dividing your iron doses? Can you give a quick run down of the times/doses for your thyroid hormones, iron and other vitamins? They need hours buffer between each other more or less or else they block each other in the digestive tract.
That's what I was telling my husband. I have a hard time trusting doctors when they have all failed me and any progress I've had has been from them saying "your labs are fine" then me ignoring that and coming online and figuring out what I need and make it happen. Also I know my body can't convert well because years ago I started with t4 only, then went to t3 added because I couldn't convert. I'm not sure why she thinks I could get Tsh up and my Thyroid work magically?
Iron: Im following the iron protocol on fb. It has helped immensely and I've done it safely with labs every 2 or 3 months the whole time. I have backed off heme for now, taking about 40mg a day only because it's so hard to schedule while I'm splitting so much Thyroid meds.
I will attach iron labs. Keep in mind the previous lab in June, I was testing dose safety, so that is with taking 40mg iron 2 hours before labs. The current one was no iron taken. Even with iron taken before labs, my sat had never been above 35%. My beginning sat was 9% when ferritin was 10. From Feb, all of my iron labs have improved a ton. They test crp in October and it was 10 but I had a bad uti at the time so the doctor said that probably played a part in it. My ferritin has steadily climbed with each lab, so it makes me believe the ferritin is accurate and not due to inflammation, although I'm sure I have inflammation.
Taking 100mg heme, I took it with meals. So 40 at breakfast, 40 at lunch, 20 at dinner. I have always set my alarm for 4 am,. Took Armour, went back to sleep and ate at 8 am. Now splitting cytomel, it makes it difficult to take other supplements at all, so I've had to pause most of them.
I keep iron with food and everything else at least 2 hours from food.
I agree about mk7. I was so incredibly sick when I first started supplementing. Tylenol or red meat gave me palpitations, no joke. So it was difficult to tolerate a lot. So I've been taking mk4 the entire time since Feb and do fine on it. I started in Feb adding one supplement at a time, slowly adjusting and tolerating before adding more.
As of right now, the only things new and changing are thyroid meds. Everything else I've taken for months I think.
Today I took 45mg Armour at 4 am, then 1.25mcg cytomel at 7am. It's such a tiny bit, so why do I now feel a little anxious? At first I thought, no way, it's on my head, but it's not. It's the same every time. 1.25mcg makes me a little anxious, 2.5 more anxious.
Like I said, in the beginning if adding supplements, everything I took was worse before better. Taking a little drop of vit d or 20 MG heme made me anxious. Everything had a paradoxical effect. Maybe this is that? Not sure.
But 1) yes, the most unbelievable part of having this illness (which by some measures 1 in 5 women have by middle age) is realizing that doctors all over the world have zero idea what they are talking about. I am no longer surprised but I am still jaw-on-the-floor twilight zone. Like… WHAT IS HAPPENING!!!
The second part of that is trying to convince our husbands that we are smarter than doctors (we are) and that it’s ok to get medical advice from the internet LOL! No one but us suffererers understand just how brilliant this forum is.
Countless among us know that we would still be horribly ill without it, and me and many others know that it has given us back our ability to function and then some.
2) a random question - have you ever had Lyme disease?
And 3) 40 mgs heme a day is much more reasonable : ) I’m on exactly the same. Also - you say transat% has never been over 35%. You know that you don’t want it to go over 35% right? Ps - I’ve heard wonderful things about the fb iron protocol group and sounds like you’re on top of it : )
Today I took 45mg Armour at 4 am, then 1.25mcg cytomel at 7am. It's such a tiny bit, so why do I now feel a little anxious? At first I thought, no way, it's on my head, but it's not. It's the same every time. 1.25mcg makes me a little anxious, 2.5 more anxious.
Oh my husband trusts no one, especially people of authority, so he trusts my gut instinct and the internet more 😂I've never had Lyme.
I do know that about iron saturation, I was just saying even with high dose heme and taking it right before labs, saturation is not very high. The iron protocol considers under 20 percent to be iron deficient regardless of ferritin. I have been splitting my Armour 90. I'll take the other 45 in the afternoon.
RT3 can be high for a number of reasons, and only one is related to thyroid: excessive T4, either from hyperthyroidism or too much levo. I have never read that a low TSH will cause high RT3.
In the US, there are quite a few functional doctors claiming that RT3 lowers metabolism and should be treated, either with T3 only or various supplements. The problem is it is very difficult to know what causes your high RT3; fatty liver, high or low cortisol, SIBO, candida overgrowth, inflammation, dieting, iron deficiency, insulin and/or leptin resistance, some drugs like beta-blockers or anti-depressants…just to mention a few culprits. Unless you can identify the cause of your high RT3, it would be almost impossible to lower it permanently. It would drop on T3 only, but unless you identify and treat the root cause, it will go back to being high again as soon as you add T4.
In Europe, very few if any doctors will test RT3 and treat high RT3.
Newer research seems to indicate that RT3 does not block RT3 from entering cells, but has its own cell receptors. Also, it is now said to only stay in the body for a couple of hours before being excreted.
Interesting! Yeah, I have many reasons I could have high rt3: too much t4 from Armour, inflammation, I just learned I'm insulin resistant because since my a1c and glucose is great they never ran insulin before, maybe some fatty liver, I have quite a bit of weight to lose that has basically come to a standstill, stress.. I mean the list could go on. Just this health stuff alone keeps my body constantly in fight or flight despite my trying everything to not be, and that alone could do it apparently.So interesting that it could be that it exits the body quickly. So much conflicting info. Makes my head spin
It used to be believed that RT3 blocked T3 from entering cells, but newer reasearch has shown RT3 has its own cell receptors. I think a lot of the information comes from the Stop The Thyroid Madness website and is now repeated as an absolute truth on many sites.
My daughter was on np Thyroid here and was doing okay on it. She moved to Germany and they only were familiar with t4. By 6 months, she was having serious mental health issues. We found one t4/t3 med and they begged the doctor to try it and she's been much better. I was shocked that most doctors only do t4 there and really are unfamiliar with t3. I thought the states were really behind with proper Thyroid care.
Europe is still in the middle ages when it comes to thyroid care. Doctors are told to prescribe T4 only and go by the TSH. The few doctors who prescribe NDT/T3 tend to be in functional doctors in private practice…much like the US I think?
Dear, I know what you are talking about. I just started T3 on the 11th of October, the first two weeks were awful. I will not say that now everything is ok, I still have hot flashes usually two hours after taking it, and even some arrhythmias -but my cardiologist reassured me.. - and I also feel quite light headed. But on some ways, I start to feel my body loosing the stiffness and joint aching I've experienced for years and my mood is better I think. I cannot advise you what to do. Personally although it seems tough I decided to , at least, take it for three months hoping that the annoying effects will go away. I wish you all the best
Thank you! So the worst was the first 2 weeks for you? I get nervous when people say it will take 6 to 8 weeks to begin to feel better. I truly wish I was just tired and achy. For me, it's anxiety, nausea, and palpitations. It's really difficult to even get up and take a shower. I'm forcing myself to eat because I'm so nauseated. The anxiety is crushing. It's so awful. I will continue because I have no choice.
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