Hi everyone, I have been on T3 for 3 months now. I do not see endo until March. he started me on 10mcg of T3 once a day and reduced my T4 by half. 100mcg to 50mcg. I felt well for 2 weeks and then I took a dive. Pains in my legs and bottom of feet, chronic fatigue. headaches, hair more brittle and breaking off every time I brushed it. Skin went super dry.
I upped my T4 to 75mcg after helpful suggestions from here. I alternate the days 50mcg one day, 100mcgs the next and so on to give me a ratio of 75mcg.
I still did not feel good and was reading that T3 is suppose to be upped every couple of weeks until you hit a sweet spot. I did this and have now been on 20mcg a day.
I have now developed swollen ankles and feet, it started before I upped the T3. I did have the same problem when I was in hospital and after for gallbladder but I put that down to all the paracetamol, codeine and ormorph (spelling) I was on. Out of hospital I weened myself off of all these and the swelling of my ankles and feet slowly went down. For the last 5 weeks the swelling of my feet and ankles have been bad, I do the finger press and it leaves an indentation. Could the T3 affects kidneys or cause swelling of ankles, does anyone know or have had similar experience?
A side note I do have low morning cortisol at 340 but they will not do anything about this, they say it is fine.
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Katherine1234
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Hi SlowDragon, thank you for coming in and helping me. I was on 10mcg T3 for a couple of months, had a blood test and my actual T3 had gone lower. But endo left instructions for me to stay on 10 mcg a day. I got worse and worse, I could not walk, the pain in the bottom of my feet and legs were horrendous (that is a low thyroid condition for me). I upped T3 to 15mcg for 3 weeks and then 20mcgs 3 weeks later. I was due another test 3 weeks ago but I was sick and had to cancel. Hospital sent me a letter with new blood test date beginning of March.
I am dosing once a day as per my endo instructions. I do feel a lift of energy for 2 to 3 hours after. As I work afternoons and evenings I am running out of steam by then. I have been diagnosed with ME/CFS, a catch all thing, if only they had told me my thyroid and B12 was wonky.
The swollen ankles and feet started about 2 weeks after my 20mcg up dose. Somehow my mind is not correlating it with that. I was just wondering if T3 can cause swollen ankles and feet.
I have no symptoms of being over medicated SlowDragon unless swollen ankles and feet are one, my heart rate is steady still on the low weak side By T3 made this a bit stronger, my blood pressure is still very low, t3 bought this up a little. My hair is still brittle and breaking off, my skin is dry, no energy, muscle aches and pains.
It's not always necessary to reduce Levo when introducing T3.
T3 naturally reduces both T4 and TSH.
We must only change one thing at a time otherwise e don't know what is having what effect!
Did you drop to 50mcg at the same time as adding the 10mcg T3?
If so, your system may have struggled with this
So, are you now taking alternating T4 at 50/100mcg daily plus 20mcg T3? Going by your current symptoms you clearly haven't reached your sweetspot.
Could the T3 affects kidneys or cause swelling of ankles
Swelling that makes the skin sink in when it's pressed on, is a common indicators of a thyroid problem and while it can affect the feet, it's typically accompanied by other symptoms eg fatigue, constipation, puffiness of the face and many more
Have you optimised key nutrients vit D, vit B12, folate and ferritin to support thyroid function/ conversion.
Can you post any lab results....including those from your diagnostic test? You are legally entitled to request those from the Practice Mansger at your surgery
For suspected adrenal failure, a 9 am cortisol is a useful screening test. Below 170 nmol/L is very concerning. Above 420 nmol/L normally excludes adrenal failure. Above 320 nmol/L makes adrenal failure unlikely if no strong clinical concern. If in doubt, discuss with an endocrinologist.
Suspected Cushing’s syndrome should not be assessed with 9 am or random cortisol. If clinical concern for Cushing’s, discuss testing methods with endocrinologist. A normal response to Dexamethasone is suppression of Cortisol to less than 50 nmol/L.
Synacthen tests: normal response is cortisol above 420 nmol/L on 30-minute sample. Consider pituitary failure if low baseline cortisol, especially if below 170 nmol/L in morning.
At 340 nmol/L your level is likely fine.....if it concerns you then a morning cup of coffee may raise your cortisol level...but drink it at least an hour away from thyroid medication.
I'd suggest your thyroid medication needs to be reviewed based on your most recent lab results....always test before changing dose.
I'm not medically trained but I suspect your ( cellular) T3 level may be too low.
Hi DippyDame thank you for coming in to help me. Yes, my endo told me to reduce my 100mcg to 50mcg and take 10mcg of T3. I did this, ok for 2 weeks then I crashed and burned. I then upped my T4 to 75mcg and stayed on 10 mcg for 2/3 weeks. I slowly, increased my T3 as per instructions on here.
Yes, I am taking 50/100 alternate days which evens out to 75mcg and 20mcg T3. I do feel I have not hit my sweet spot DippyDame but it seems so much medication to me. I am someone who would rather be medication free. For 6 years doctor left me of 25mcg, it was only after I became so unwell she put it up to 50mcg for another 6 years. It was only the lovely Dr C that looked at all my blood tests from 15 years prior and told me I am undermedicated on thyroid hormone, my B12 is pooling and not reaching my cells, I have enlarged red blood cells. He also said my cortisol had tanked and to take lose dose 10mcg hydrocortisone. I could not get this any where privately.
Endo said my conversion rate was not good that is why he put me on T3. My T4 was just over range. Now my T4 last blood test was 12. I have always felt a bit better if my T4 was just over range.
D3 at top of the range. I do not supplement anymore, I just make sure I get daily summer sun. B12 I am still someone that does not do well unless I am self injecting every other day. My folate tanked because doctors did not tell me I needed to take daily high dose folate with B12 injections. I now take 5000mcg of folate a day. Have been doing this for the last couple of years, alas my enlarged red blood cells do not go down they have been getting higher over range, macrotosis (spelling).
I am very high ferritin, over range, and a high saturation level. Which I feel could be inflammation. As I have not eaten much meat for the last 2 years, I have a strange meat aversion going on.
I think I have put my last lot of blood tests from endo on here, I will look and then I can repost for you.
Hypothyroid symptoms are still chronic fatigue, hair breaking off and falling out, dry skin, no appetite, aches and pains in joints and a daily low lying headache.
The weirdness things was all my gallbladder and tummy pains disappeared when I started T3, they have come back now but not as bad.
My morning cortisol is 340 DippyDame, a year ago I did a cortisol saliva test, I was so poorly. My cortisol saliva test showed me flatlining all day and just scrapping in by bedtime.
The weird thing was when I was sick and hospitalised for reactivated Epstein Barr, strep B and tonsillitis December/January my cortisol went up to 600 I really felt good apart from my illness, I had stamina I could walk and not be housebound.
DippyDame I do not like coffee :/ is there anything else that would raise morning cortisol?
Sorry I am editing this like crazy :/ my heart beat is stronger and my extremely low blood pressure, dangerously low at times, I would pass out getting up from a seated position, that has risen slightly still very low. The endo was very concerned about my blood pressure and wanted me in A&E but I knew that they would just give me bags of IV fluid and send me home. I am making sure I keep my water and electrolytes up.
I agree with greygoose....she has answered your questions
In addition....
Your poor conversion is likely the main cause of your problems....
Low conversion = low T3 = poor health.
Low T3 slows metabolism....weight gain.
T3 promotes oxygen delivery to tissues. ...Low oxygen = fatigue
For good health almost every cell in the body needs to be flooded with T3 by way of an adequate and constant supply .... almost any/ every part of the body can be affected by low T3
A month ago you wrote
I spoke to endo nurse this morning and asked when my prI spoke to endo nurse this morning and asked when my prescription was as I had to up T3. She says my last lot of blood tests were all normal. I wish I had wrote them down as she told me. She said T4 -12 and she said was normal. T3 - 4, she said normal, TSH 2.87, she said normal. I know that I do not feel good unless my T4 is 20 and TSH below 1
The word "Normal" means absolutely nothing in relation to your dose being adequate....it just means the result sits within the range and for each person there is a point within the range that is optimal for them
You gave us results above but no reference ranges please can you add these.....or ask your surgery for a copy of the results. You are legally entitled to do this. Ref ranges vary depending on how the different test machines are calibrated
The weirdness things was all my gallbladder and tummy pains disappeared when I started T3, they have come back now but not as bad.
It's not weird....when we need/ start T3 our body initially responds briefly by improvement but this only lasts a short time before it realises the dose is not enough....so it signals the need for more by returning the symptoms.
Listen to your body it will tell you when something is wrong....as you did above... I know that I do not feel good unless my T4 is 20 and TSH below 1
FT4 of 20. appears to be close to top of range
To obtain adequate T3 we may appear to need a high dose of Levo with a high or over range FT4 ( you suggest this is your experience)....BUT an over range FT4 can give rise to cardiac problems and raise the risk of cancer....SO we add T3 to Levo instead ....what we then need to do is to establish the correct dose of both levo and T3 and for that we need both results and ref ranges of both
Re Epstein Barr....Have you tested your thyroid antibodies for Hashi's?
There is a possible association between Epstein–Barr virus infection and Hashimoto's thyroiditis.
I'm sorry this is a bit of a long rant but hopefully it explains "the how and the why" of dosing with replacement thyroid hormones
DippyDame, re: Epstein Barr. I had my thyroid antibodies checked about 15 years ago, they were ok. Doctor said I do not have Hashimoto's. Would it be worth getting them checked again?
it seems so much medication to me. I am someone who would rather be medication free.
Levo and T3 are not medications in the normal sense of the word (and I do wish people wouldn't call them that!). They are thyroid hormones, replacing the hormone your thyroid can no-longer make enough of to keep you well, and without which you cannot live. They are not drugs.
My folate tanked because doctors did not tell me I needed to take daily high dose folate with B12 injections. I now take 5000mcg of folate a day.
It's not just folate you need with B12 injections. All the Bs work together and need to be kept balanced. Perhaps that's why the B12 doesn't seem to be reducing your enlarged red blood cells.
So, what you need is a B complex. One with methylcobalamin and methylfolate. Thorne Basic B and Igennus are good ones.
5000 mcg folate is a heck of a dose! It's usually recommended to take 400 mcg - which is what you would get in a B complex.
I am very high ferritin, over range, and a high saturation level. Which I feel could be inflammation.
Do you have high inflammation markers? CRP is the one that is usually tested at the same time as ferritin.
I have a strange meat aversion going on.
Hypo symptom.
is there anything else that would raise morning cortisol?
A high protein breakfast as soon as you get out of bed. Make sure you get plenty of salt and vit C. And, taking that B complex could also help because the adrenals need lots of B vits.
Thank you for coming in to help me out greygoose. I know they are copy hormones but they are all petrol chemical based which our bodies do not like. I self inject daily greygoose sometimes twice a day I am on 5000mcg as per B12.Org's instructions. I am also a nutritionist as well as a psychotherapist so I do make sure I get all my other b vits, selenium, vitamin E, C, L-tyrosine et al. I rattle I must get my CRP checked again, I have not had that done in a long time, it was very high at one point. The trouble is my doctor is very passive in my healthcare I end up having to ask her for things, then she agrees. When I once told her I should be euthyroid on thyroid replacement, 1 or under. She threw her hands in the air and said I know nothing about thyroid.
I never knew meat aversion was a thyroid symptom greygoose, it started about 18 months ago.
I will try the high protein breakfast and more salt.
I know they are copy hormones but they are all petrol chemical based
Do you have any information on that? I've never heard about it before. But, if that is a problem, why don't you get yourself some NDT - Armour or efra or something?
I would love to be on NDT greygoose. I tried 5 years ago, but got very unwell, I did not know at the time my adrenals had tanked. It feels too scary to try it again. I am looking for my research information on all medicines contain petrochemicals, I have a huge library of books, it might take me some time.
OK, but you must understand the effect statements like that have on people who are new to all this. You are, after all, a psychotherapist. Many people just diagnosed are scared of taking levo for the first time. This is not going to help them.
As for NDT, it doesn't suit everyone. It didn't suit me at all, even when my adrenals were treated (HydroCortisone) and my nutrients optimal. I'm much better on synthetic T3 mono-therapy.
I cannot be responsible for how other adult people view their world or how they process it. I am not their parent. If we eat fast foods or processed foods we are already getting lots of petrochemicals. I can see that what I wrote has triggers some peoples ego's. That still is not my responsibility. The research I was doing many years ago was for my nutrition thesis. I went all the way back to Rockefeller, how medicines came about, the health of people after world war 2, the blue zones, environment, so on and so on. As a psychotherapist I do not parent people or my clients, it would be a great injustice, taking their power away from them, and not staying in their frame of reference.
No-one is suggesting you parent anybody but you should understand how people feel and be kind. It's not kind to scare them about medication they cannot live without. If this is something you can prove and back up with scientific detail then it should be a separate post to warn people, not just dropped into a converstation about something else. Then people can chose to read it or not.
I look forward to reading the results of your research.
I'd like to know where you have found solid scientific/industrial information that levothyroxine and/or liothyronine are petrochemical-based? Despite looking many times, I have never managed to find clear and current information about their manufacture/synthesis.
Possibly ironically, L-tyrosine is one of the possible starting point for industrial thyroid hormone production. But you seem content with that.
I did not mean or want to start a war on this. It is not clear, you won't find much on a google search, it is played down quite a bit. I got it from 2 of the big health doctors books and I am sure from what doctors don't tell you. Helvella your tone is not nice. Maybe you are having an off day, I am too not well and struggling to work as it is, I know what I read and the science behind it. I wish to conclude this convo. Someone else has asked more nicely, I will help them out as soon as l find the research.
Greygoose I take daily 5000 mcg of folate instead of the daily 5000 mcg of folic acid the doctor wanted to give me. The daily 400 mcg you state is for someone who does not have pernicious anemia and does not inject B12.
Thank you for your incredible patience while you have been awaiting the outcome of our ferritin reference range review. We conducted this with Inuvi lab, which has now changed the reference ranges to the following:
Females 18 ≤ age < 40. 30 to 180
Females 40 ≤ age < 50. 30 to 207
Females 50 ≤ age < 60. 30 to 264
Females Age ≥ 60. 30 to 332
Males 18 ≤ age < 40 30 to 442
Males Age ≥ 40 30 to 518
The lower limits of 30 are by the NICE threshold of <30 for iron deficiency. Our review of Medichecks data has determined the upper limits. This retrospective study used a large dataset of blood test results from 25,425 healthy participants aged 18 to 97 over seven years. This is the most extensive study on ferritin reference ranges, and we hope to achieve journal publication so that these ranges can be applied more widely.
Apologies Dippy Dame, I am working with clients and won't be on here to later. I got it from one of the big health guru's books and another wrote about it. I will try to find it later. here is a quick google search - Drugs Rely on Petrochemistry
In 1897, German chemistry Felix Hoffman synthesized aspirin (acetylsalicylic acid), one of the most widely used, safest, and effective drugs in the modern world. The synthesis of aspirin opened a new world of drug chemistry. Petrochemicals cumene, phenol, benzene, and other aromatics are used to make not only aspirin, but also penicillin and cancer-fighting drugs. Ultimately, most drugs are organic molecules made using petrochemical polymer. Those that are not are often purified using petrochemical resins. Polymers are used to make pill capsules and coatings. Time-release drugs rely on a tartaric acid-based polymer that slowly dissolves, administering just the right dose of medication. Drug packaging, made using plastics, keeps medication sterile, child-resistant, and safe from accidental breakage.
Sorry DippyDame, the information I researched and read stated in all or most. Even the coating on tablets. They also use parabens as well. Some medications have fluoride in them. I am unaware exactly what is in thyroid replacement hormones as they keep it a secret. I have a huge library so it will take me some time to find the couple of books that have specifically written about this.
That's fine. I thought your comment was a bit of a sweeping statement so was curious about where you found the information you quoted.
You said
I know they are copy hormones but they are all petrol chemical based
Now you say
I am unaware exactly what is in thyroid replacement hormones as they keep it a secret.
I'm not sure that they can ( legally) keep either the active ingredients or the excipients in replacement thyroid hormones ( or any other medication) a "secret".....
No need to take up your time to search your library for the books....most things can now be researched on the
I'm sorry if I appear abtruse but we have to be very careful that what we share is reliable and I simply wanted to better understand your point of view
Yes, that would include thyroid medication too. It is funny that I could find the ingredient's in the liquid T4 medicine which includes petrochemicals and parabens but cannot find anything on the tablet forms. Most medicines are not labelled with all ingredients in them. They do not publish this, the same with our food we do not know everything that is in it. They are able to get round it by loopholes in the law.
Interesting idea but I think your worries about petrochemicals are unfounded.
Many parts of our bodies are made of the elements carbon and hydrogen (proteins, carbs, lipids) as petrochemicals are and so the latter could be a source for hormones (I have no idea if this is the case). However, there is no difference in these elements whatever their origin and our body could not detect or be affected by it as the hormones produced are identical to our own.
The problem would be if there were any remaining noxious parts of the petrochemicals in the tablets. However, these would be have to be declared in the ingredients list, like the fillers are.
I may be being naive here but if anything other than hormone (and filler) was in there, it would be declared as it could have some unintended consequences that would be important to know.
AKatieD thank you for coming in to help me. Actually parabens were not one of my issues, see original post. However some people took it off topic because I said that nearly all medicines are made with petrochemicals. I had researched this a number of years ago. Now certain people want proof from me although I would rather think that they should provide the proof of why they do not think our medicines are made using petrochemicals.
Thank you for coming in and helping me Hippothyroid (love the name) I feel I am between a rock and a hard place at the moment with no support from Endo, he is only seeing me every 3 months. I have raised T4 from 50 to 75mcg and T3 from 10 to 20mcg. I could try going back to a 100mcg of T4 and stay on 20 mcg of T3. It does seem a lot of medication now, whereas before they had left me on 50 mcg of T4 for 7 years. My T4 was over range and my T3 just scrapping in range. The Endo said I have a conversion problem and it looks like he is right. I felt so well adding T3 for the first 2/3 weeks, then it went downhill, with really back hypo symptoms coming back.
Katherine1234 'I felt so well adding T3 for the first 2/3 weeks, then it went downhill, with really back hypo symptoms coming back.'
The symtoms experienced from too much thyroid hormone can be very similar to those experienced with too little. There is often no clear cut way to determine whether symptoms are from too much or too little. This is why accurate FT4 and FT3 blood tests are so helpful, to evaluate alongside symptoms. You may well be taking more thyroid hormones than you need.
Thank you for coming into to help RedApple, I have only had one blood test since being on T3 and T4. That was when I was on 10mcg of T3. My T3 result had not gone up at all since I was on just T4 only. My T4 had shot down from 23 to 12. TSH was 1.92 I think. I am going to ask for a print out when I go for my blood test at the beginning of March.
Katherine1234, Many of our members find they have more confidence and better understanding of what's happening if they do their own home thyroid blood testing (either instead of or as well as routine tests requested by their GPs).
If you are already suffering, you may not want to wait another month on this same T4 and T3 regime. Whilst TSH takes weeks to stabilise, knowing where your FT3 is right now might be helpful for you to understand the direction you're heading in.
I think I will send off for a home test RedApple. I also want to do another saliva cortisol/dhea test. I can do them both at the same time. The only problem I have is my doctor or endo will not take no notice of these tests, but at least it gives me a benchmark for me. I am feeling very hypothyroid at the moment. The other good thing is my heart is very steady now, it use to be so weak, weak beat as well as terrible low blood pressure. I use to pass out at times just by standing up. My blood pressure is up a little bit, it is now 60/90 before it use to be 54/80.
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