Update for all of my friends

Well yesterday I put a call in to the new endo. A few wks ago i seen her and after going back and forth she upped my dose from 50 to alternating days 50-75 because my TSH was up to almost 4 again so she claims i was unmedicated but wanted to try just adding 1 or 2 pills of my already taken 50 at the end of the week.... i didn't think that was enough. Before you jump all over that one ladies lol, FYI as i stated wks ago. I went from feeling good to hyper symptoms on 75. WE do not know if it was too much T4 for me, too big of a dose going from no meds and sick for so long and right into T4, the generic and maybe it was side effects kicking in? Because after some months they had to put me on name brand synthroid because the generic Levo was giving me headaches daily and stomach nauseousness to recap or maybe I just don't handle more than a small dose of T4 well! So I gave a call to see if she would call in some Cytomel. Never called back yesterday like they said they would, waited all day. Today i called at lunch and i was told dr doesn't think it is a good idea because you had anxiety and palpitations before. She claims T3 causes that. I said no I was on too much T4 which caused that but i have been experiencing hypo symptoms on the lower doses. So finally after a song and dance they said they would call it in. I called back to make sure it was name brand as i didn't want to take the chance doing bad on this generic either. Pharmacy had no record of it called in this afternoon and called again at 6:30 still nothing! I called the dr office and of course gone till monday! How convenient! I am super Mad! She was suppose to call in a dose of 5 to try and she wanted to have me keep her posted on symptoms. She also insisted that I drop back down to 50 of synthroid once i start 5 of cytomel. My question everyone is what do you think? If my TSh was tactically at 4 on 50 synthroid, with or without the new add in I thought I should stay on the alternating. The T3 would make my T3 go up but would not effect my TSH and T4 correct? And I think that is total crap about T3 giving palpitations unless you are on too much, No????

18 Replies

  • Taking T3 most certainly would affect your TSH. It could possibly suppress it - will suppress it if you take enough. And your FT4 will drop/stay low.

    I find it very strange she would consider giving you T3 without doing labs to see if you were converting correctly. I do wonder, in fact, if she has any intention of prescribing it, and isn't just fobbing you off with empty promises.

    Either T4 or T3 could potentially cause palpitations and anxiety if your body is unable to handle it. If, for example, you have nutritional deficiencies. But, palpitations and anxiety can be symptoms of both hypo and hyper. So, no excuse not to prescribe. It's just that they know nothing about T3 - what it's for, what it does, how it works, etc. Which makes them reluctant to prescribe it.

  • everything you said Greygoose I thought of myself so thank you for confirming my theories! She was suppose to prescribe me 5 Mcg or Mg whatever it is a day. My intention just to be on the safe side would be to start with a half of that or even a quarter and work up to the 5 a day just to see how my body reacts. In my opinion with the T4 I definitely think it was either the fact that my body dose not handle more than a little T4 or it was just too much too fast and my numbers dropped too quick! I went from 6 to less than 1 in a month!!!! (TSH) when I started getting hyper symptoms I cut the 75 in half and a few days later went and got blood work which was at 1.01 so when I was having the symptoms it was less than 1 by how much i have no idea!!! That is a quick drop and I think because i was hypo and sick for so long it was a shock to my body for sure. Now the whole reason why i wanted to bring a low dose T3 into the mix was simply because so many studies say that most people should have at least a very small dose of T3 to feel better. And I would like to lose this extra weight for sure which I haven't budged at all since she upped my synthroid. And I am active and eat well. I take lots of supplements and my nutritional levels are not top range yet but no where near insufficient. I made that decision 2 yrs ago to start supplementing once i found my Vit D was very low. I exercise as much as this dreadful disease allows, i get adequate rest, eat well and research the heck out of hashi's and hypothyroidism. If this dr does not call Monday and apologize for not calling that in and then proceed to call it in, she is fired and i will go on to the next!!!!

  • OK, but... The TSH has nothing to do with anything. The only thing the TSH affects is the thyroid gland. And your thyroid gland is out of the loop once you start taking thyroid hormone replacement. The fact that the TSH dropped quickly - although that wasn't a particularly rapid drop - has nothing to do with anything. (What's more, it was pointless testing after four weeks because the levo wasn't fully sythisised, so it told you nothing useful.) You're barking up the wrong tree, there. It's the FT4 and FT3 you should be looking at. Low T3 - or high T3 - is what causes symptoms, not the TSH.

    However, I do agree that 75 might have been too high a starting dose for you. 50 would have been more suitable.

    Everyone doesn't benefit from a small dose of T3. Some people can't tolerate it at all. We're all individuals, and anyone that says 'everyone needs' T3 is as wrong as those that say 'no-one needs' T3. But, we should be allowed to try for ourselves, obviously. Everyone needs the T3 they make in their own body, but taking T3 orally is another kettle of fish entirely.

    However, I still say that before agreeing to give you any amount of T3 - no matter how small - she should have tested the FT4 and the FT3 to give you a base line. The fact that she didn't, makes me think she has no intention of prescribing T3 - or is a very bad endo!

    Also, one can have no idea if 5 mcg (not mg, that's x 1000!) will help you lose weight. It's still very early days in your journey, yet. And you don't know what your FT3 level is. T3 is not a magic pill, and it is not a slimming pill. There will still be a lot of patience needed.

  • well greygoose I have had labs done the week before i seen her so she knows what my levels were. Like I had said in other posts, no matter if i was not medicated or on 37mcg, 50mcg or 75 my T3 level never increased. to my understandment our TSH should be as close to 1 as possible and out T4 and T3 upper 25% of lab range to not have symptoms. My T4 and T3 have been consistently very low and even when my TSH was 1.01 for that short time after me breaking the 75s in half for a few days and getting retested, my T4 was still near bottom still after I just stopped having hyper symptoms. If this dr prescribes cytomel, i am aware of the possible fact i may not tolerate it and in fact will start with maybe even a quarter pill and work up to the full 5mcg to make sure i am ok. I hate nothing more than hyper feelings! If this doesn't work than maybe increase to 75 of synthroid and see if now i have been medicated for some time maybe my body will finally be able to handle it from working my way up. I know there is no magic pill but after being wrongly diagnosed with other stuff for yrs and feeling so bad and sick for yrs I need to find my ideal combo sooner than later.

  • So, that's what's making you ill - your dose is too low and your Frees are therefore too low. It has nothing to do with the TSH. :)

  • Hmmm difficult one. Have you thought of trying NDT?

    Maybe it's the fillers that make you feel unwell? Effect me terribly but I'm ok on Thyroid S.

  • we already determined it was the generic that was causing side effects. I have been on synthroid for months now. I am trying the T3 add in because i do not eat any meat besides chicken or turkey and i was a vegetarian for some time so I am doing synthetic right now, i am not too happy about the animal hormones.

  • Hmmm difficult one. Im not sure that your doc is thinking this through very carefully. Has she checked the usual ferritin, b12, vit D folate, iron and b12 -you need optimal levels to absorb thyroid hormones. Secondly you are obviously sensitive to the fillers and this can be a problem causing poor absorption. What was your ft4 & ft3 levels like? She should NOT be prescribing according to TSH-doing this leads to under prescribing.

    It is possible the palpitations are due to being under medicated as others have said.

    How knowledgeable and good is this doc on hypothyroidism? -she doesn't seem very au fait to me. Shocking she left you like that with no script....

  • all of my levels are good. and no dr i have been to tests anything besides the free T4 and TSH. The only reason i know any of these is I am having my GP write a lab script for what i want tested or my whole panel and the nutrients tests would never have been done! And yes I she gotten palpitations from under and over medicated! some do not believe me that you can get them from hypo but it is true.

  • Apologies for all the typos! Hope it makes sense!!!!

  • I cannot function on T4-only. My body simply cannot convert it. My full-replacement dose is about 130mcg, but if I get up to as much as 100, I get anxiety and other hyper symptoms that make functioning impossible. However things work very nicely on T3+T4=15+75. For whatever reason, there are a lot of ignorant doctors that don't understand patients who cannot tolerate T4. The line about palpitations is an excuse: adding T3 in, at a T3:T4 ratio of (usually) 1:4 - 1:10, actually REDUCES palpitations caused by T4, for patients who cannot convert their way to the euthyroid state.

    I don't know how much T4 you should be on. I would be inclined to keep up the alternate dosing (effectively 62) and add in 5-15mcg T3, maybe in 2.5mcg steps. I would NOT rigidly follow the doctor's advice; if you know how your body behaves and how hyperthyroidism feels, then it's no big deal to adjust dosage in accordance with how you feel. If you start feeling hyperthyroid, you can quickly get out by dumping T3 (short half-life), then reducing T4 and slowly ramping T3 up again.

    Is this doctor testing only TSH? If so, that is wrong! She should be guiding your treatment via FT3 and FT4. It is asinine to guide your treatment by measuring a pituitary hormone. Yes, T3 will pull your TSH down, but so long as TSH is over 0.05, I wouldn't pay attention to it.

  • yes Eddie83 she does not believe in testing T3 lol, in fact does not believe in adding T3 meds but i coaxed her!!! She OKed the 5mcg so incase my body doesn't tolerate it i planned on taking a quarter or half of a pill for at least a week or maybe 2 then increasing slowly. When she said to drop the T4 first though i said what?? I have had palpitations from both hyper and hypo and for her to say it will happen to me just simply because i got them when i was over medicated in ridiculous! I am not a dr and i knew before i started the 75 it might be too much. I mean my TSH was 6 and i was sick for yrs without ever being medicated plus i am a small person and the first dr thought it was a good idea to start with 75???? instead of 25, 50 or even the 37 I ended up taking for a few wks? Within 3 wks i went from hypo to hyper!!! and then he wanted me to stay on the 75 when i was hyper. These drs do not care how you feel at all. I told him no!!! started breaking them in half and then a few days later the idiot sent me for tests. By then my TSH raised to 1.01 and the hyper went away. I am going to do what i thin kid right and sooner or later I will find my happy place.

  • BTW when you go hyper on T4-only, you don't have to lower your dose. You can just go off completely for 1-2 days, then resume at the lower dose you think is appropriate. T4 has such a long half-life that simply going to zero for 1-2 days works well ... at least for me ... have done it many times.

  • Thank you for the tip! I love this site..... everyone is so helpful!

  • Yes I have done the same thing. Infact a specialist once got me to go 10days without! I felt fine fine for the first 7 days! However I dont have a conversion problem but I do have sensitivites which is why I Switched to a natural dessicated thyroid meds. For me that worked miles better then a synthetiic t4/t3 mix. Hiwever once you know that dropping or stopping your meds for a short while you can do without ill effect then it does help knowing this if you do overcook yourself.

  • I was always told do not skip a day so that surprises me. One dr even told me that once you start hormones your thyroid no longer works and you need to stay on them.

  • It is true that once your thyroid starts to fail that the thryoid meds are for life and you need to take them regularly.

    I was talking about when yiu are taking levothyroxine and end up taking tio high a dose so that you develop hypERthyyroid symptoms.....that's when Ive stopped taking them for a shirt oeriod if time. I then resumed taking them every day but at a lower dose. Levothyroxine has quite a long shelf life in the body so it takes several days before the levels drop.

  • ah I get it.

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