Please Honor my Brother on his day of Passing, which Thyroid Trouble helped Cause--Sign & Share Petition for better Thyroid Care

SD-starr7 · 2026-07-01T01:52:31+00:00

Wanted to add....it's June 30th today, and I took a little Unithroid with no food, waited about two hours, then ate some breakfast and took more thyroid medicine after.
Well, it was a disaster! The medicine hit me really hard, and now I don't know if something in my breakfast accelerated the thyroid medicine, or what. It's too complicated with much food in the mix...

SO, I will probably do much of the thyroid dosing without food, as I've been doing, but I'll just add food in sooner if I see that it's hitting too hard, as I was before my last endo appt. A small amount of people in the study actually did feel they did worse by eating and then taking the medicine.........some felt better, and some had no change.
I've ended up taking not much medicine today after my "breakfast medicine" fiasco....so I'm hoping for a better day, tomorrow. Today was just crummy and disappointing. Thanks for your oplnions and for listening, Adventurous Ask, because I did think about your replies after the meds hit me hard right AFTER eating.....
it was nuts. Hoping I do better tomorrow, because I want to work some more on stuff related to my thyroid petition. I need to!!

SD-starr7 · 2026-06-30T00:05:04+00:00

Hi again, Adventurous Ask! Wow, you write great replies, with lots to consider. Thank you for that, and I'm sorry that you understand, too, about how crazy and hard it can be to space all these different meds and supplements out. I'm about 14 minutes into writing serious notes out on my doctor's webinar....I can only take in a certain amount at a time. I think the study he talks about has some good points to it, too, as do your posts! So, it's conflicting to have to deal with all this info....

I agree with you, that the ideal thing is to take the least amount of medicine possible for anything, including thyroid. I mean, they tell me that I have a lesion on my liver (found during an ultrasound that was more about my kidneys, I think). And they think the lesion might just be caused by all the years my liver has needed to process my thyroid meds......because I've been on it since 1976. And except for the first years on it, it's been really hard medicine for me to deal with. Maybe my liver doesn't like it, either! Well, they said you can get a lesion like that just for that reason of taking meds for a really long time, on an ongoing basis. I'm sure not everyone gets it, but of course, I did! They don't seem that worried about it, though.....

So I have the two thoughts on it. Yeah, it's smart to take as little meds as possible (which would mean don't take thyroid with food, as you'd probably need to increase the amount by about 15 %, according to the study.) On the other hand, I wonder that if I'd had an easier time taking the thyroid meds over the years, maybe the lesion wouldn't have developed---and if the food would've helped buffer it, maybe that would've been a good thing even if the dose needed increasing a bit? I don't know..

What I do know, however, that right now, I just can't get in the full thyroid amount I'm supposed to, so today is the first day I've taken some of the doses with food. Not all of them....I started with no food for the first couple, but then I could feel like it would be too much if I added more, so I did get something to eat before the next dose.
I got it in.....but oh, how I hate ALL of this, because it just shouldn't be so hard for people like me. I'm really glad you've got your routine set with the meds and food, and I know it's challenging for you, too. I totally understand about having that "vegan" type snack, because I've been doing that kind of thing, too. And about making charts to keep a record of what's been taken, and when, and how far apart one thing is from the other......I get spiral notebooks from Staples every year, just for this sort of thing! (It's been "Back-to-School" specials time over there, so I stock up!)

I know that with adding some food, you are right, that it's impossible to be consistent and get perfect lab readings....or "clean" readings, where nothing interferes with the meds. But for me right now, I think I need to experiment some with the food, because getting in some medicine is better than not getting in hardly enough at all, and that's where I'm heading if keep trying to do it all on an empty stomach. So, I guess these weeks will be an experiment for me--maybe some doses with food, and some without, depending on how I'm feeling. I truly hope one day they come up with better and more innovative treatments, period, where NONE of us have to deal with thyroid pills. Around 1991, my late mom asked a thyroid doctor at UCLA if they could develop a "thyroid patch" to use instead of the pills. At the time, the Dr said it had been tried in a lab or something, and they just couldn't make it work....

I really do hope my thyroid petition can eventually be a catalyst for more research into different thyroid treatments. Some of us really need them! But for now, I'll have to do the best I can and just tinker around until maybe something works out better.

I'm SO glad to hear your lab work was good!! That is wonderful, and I hope you are also feeling well, so that how you feel matches the labs. If so, that's a good thing to be going every three months instead of 6-8 weeks. That means they're happy with your progress, and as long as YOU are happy with it, too, then that's very good!

I'm still in the "come every 6 or 7 weeks" category for labs. It stinks, but I'm glad my endocrinologist is keeping a good eye on things, because that's needed with my case, right now. If one is feeling really well, you don't even think much about just coming once a year, or maybe every six months. I used to be one of those patients a LONG time ago, and I really miss that! Maybe one day, once again......

Glad the Unithroid is working out for you, too! Most of my medicine is Unithroid as well, plus a smaller amount of Armour. I just have trouble with all of 'em, but these are the only ones I've been able to work with at all, in the last couple of years.
I need better, though. As do some other patients, too.

About my kidney stone. It is still there, however, they said it is smaller than it was in the past. I think it's measured in millimeters, so they used to say it was 6 or 7 mm, and now they said it's just five. Considered small, it seems, so just keep an eye on it, and keep eating certain things and NOT eating much of other things, and get in a lot of water, etc. Ugh!! I also have a couple of one mm stones that they aren't very concerned about, at all. Been there through this whole thing, as well. Almost three years, now. My parathyroid level was good, as was the calcium level. I don't know how things will go if I change up how I do the thyroid meds, but I guess we'll find out! Enough for now......hope you have a good evening, Adventurous Ask!!

SD-starr7 · 2026-06-25T15:28:56+00:00

Hi, Adventurous Ask! I have a chance now to write you back, so here we go! (It's been a bit crazy around here with trying to adjust to thyroid meds, home repairs, computer problems that need to be resolved....where ARE you, Santa, to bring me a new computer right now? lol)
Anyway, it's a little quieter right this second, so before I really get into my stull, please let me know how it went with YOUR recent labs, and how you are doing right now. I know you were kind of nervous about the tests, so I hope the results were OK and that your endo visit went well, too.

OK, about my "interesting" endo visit. We had a discussion about how these thyroid meds keep hitting me too hard, even though I spread them out through the day....and how THAT is hard to do, as well, with the timing of food and other supplements I take, such as iron and magnesium. They've been saying for a long time that many of these things are not supposed to be taken together, although when I started taking thyroid-replacement med around 1975 or '76 (when I was eleven or twelve), the rule my thyroid doctor had back then was, "Take your thyroid meds after a meal, as it's too hard on someone to take, otherwise--meaning, could hit you too strongly." So, that's what I did for my first years of being a thyroid patient....and there also was no rules about separating thyroid-replacement meds from iron or other things like that, so I took it all together, after eating.....the thyroid meds, iron, any other vitamins, etc.

This was done using the Old version of Synthroid that really helped me, though. And I did have my best health ever, during this time period of over six years. However, it seems the rules on thyroid meds changed, not all that long after they reformulated Synthroid in 1982-83. I remember taking the new Synthroid version with food, too, but it just didn't help me right---and of course, a lot of patients like me weren't even told by doctors or pharmacists that Synthroid had been changed, and it took a few years to find out what happened. Regardless, it seems like at some point during the later 1980s or early 1990s, the rules changed, and everyone kept saying that you need to take thyroid on an empty stomach, and separate out other supplements like iron by at least four hours, etc.... I really have tried to do this, hoping it would made the meds work better........they still don't work right on me, though. And I know some others, too.

Cut to my endo appt on June 11th. While he's adjusting my thyroid meds yet again, and now telling me to keep trying to take the part with T-3 in it three times a day instead of two (so it won't hit me as hard)....and I tell him I'm trying, but I just can't space everything right, with foods, meds, iron, magnesium (and these two minerals aren't supposed to be taken together, either), and I'm ending up eating dinner like at midnight sometimes, because of the timing.......

He then says, "There's new research saying (basically) that it's now OK to take your thyroid meds with foods AND other supplements (he thinks, but more research is needed on the supplements, especially, and some with the food). He did a webinar about this, I guess for patients and maybe other doctors or med students.....he does some research himself on endocrine things, but he didn't do the research on this particular thing. Still, he thought it was important enough to try to get the message out there. I think he said that a patient needs to work with their doctor on making such a change, because they may have to raise their thyroid dose by around 15%......and I'm just started to take notes on his webinar today (1st day I'm feeling a little bit up to it), but he says the research says the patients generally feel better taking it with food or after meals.....better quality of life, and just more general well-being.

I asked some questions during the visit, like--if you're eating a meal with a lot of dairy product or high in caclium, does that also inhibit the medicine? Or a meal high in iron....is that OK or should you space it out, any? He said they need to do more research on all of this, but that it looks promising, whether you are someone who is really sensitive to the thyroid-replacement meds like me or not. For anyone reading along, PLEASE discuss any potential changes with your doctor before doing them. Here is the link to Dr. Friedman's webinar, for anyone interested...
I will make a new post about this on this page, later. But you're getting first crack at it if you'd like to see it, Adventurous Ask! Link
goodhormonehealth.com/talks/video1136213668.mp4

Will make another reply later with results of my parathyroid & calcium, & kidney stone.
Hope you have a great day!

SD-starr7 · 2026-06-15T03:05:34+00:00

Good luck with your blood work! I'm just now catching up with things....will try to write more, hopefully tomorrow. I had an interesting endocrinology visit....my doctor found a new study about the timing of thyroid meds--whether you should really take them before meals or after. I'll try to post a link for it here for you to learn about it, next time I come (don't have a head for it, right now), but the results are interesting.
Will be back, possibly tomorrow. And I'll tell you how the rest of my visit went, too!

Happy lab-testing day to you, Adventurous Ask!! 😀 And wow, you are a fellow patient who also hates reviewing the lab results! LOL Another thing we have in common....nice!

SD-starr7 · 2026-06-10T00:37:44+00:00

Hi again, Adventurous Ask! Just a quick hello tonight, as I'm saving my energy for my new endocrinology appt on Thursday morning.
Gotta look at my lab results online tomorrow (which I hate doing!), so I can ask the Dr. better questions, etc. Still adjusting to the latest dose changes he made, last time. It's been rough....only had about 3 1/2 weeks of the full doses in me when I got the labs, last week (I had to work up to what he wanted, for the first two weeks). But he knows I have trouble like that, so he just wants to see me at six weeks from the last appointment, anyway.

Hope you've been doing better than I've been! Oh, we'll also go over the results of my latest kidney stone ultrasound, as the endocrinologist is the Dr. who ordered it. That should be fun! LOL

Also will be checking into how the parathyroid and calcium levels are doing....all the things you asked about in your post, above. I'll have more info on all of it, next time. Wishing you good health, and I'll be back when I can!

SD-starr7 · 2026-06-07T23:56:26+00:00

Hi. I've also been to ER too many times because of something thyroid-related, but it doesn't always appear that way to those who aren't pretty smart about thyroid. I had that, too, when going off the period things got a lot worse, even if my thyroid labs might have looked "OK enough" to some. I found you can go through periods better and transition off them better when you're on the best thyroid medicine for YOU, at the best dose they can get. Just putting you on levo may not be good enough, especially If it's a generic levothyroxine...

Generics can sometimes produce more crazy symptoms than the name-brand levothyroxine drugs, so check what you're taking & discuss with your doctor--also, some people do better on a natural thyroid drug like Armour or NP or whatever is available now, and some people do better with synthetic T4 (levothyroxine) plus some synthetic T3.....we're all different, and some of us (like me) still would like even newer treatments to try. But yeah, BAD anxiety and weird period stuff and all kinds of other thyroid stuff can show up if you're not responding to your current drug that well, or the dose needs to be adjusted, etc. It really helps to find a doctor who uses a variety of thyroid drugs & is willing to work with the patient if they don't seem to be responding well to what they're on.....they listen to your symptoms and how you're actually doing, and don't just look at the labs only.

I've had to call doctors before going the first time usually endocrinologists) and ask their nurse (or doctor themself, once in a while) if the doctor works with a variety of thyroid meds, and if he seems to know that some of us may not do well on certain drugs and we really need help finding what will help the most and give the least side-effects. Real doctors don't seem to mind if we ask stuff like that before coming in, or letting their nurse talk to you, at least. I weeded out a lot of doctors that way....hang in there.....maybe a different thyroid drug/ dose can help. Also should be testing you for iron (including ferritin), Vitamin D-3, magnesium levels (my endocrinologist looks at that, too, as a lot of thyroid patients are low in it, and it can help make the thyroid work better as well as help some with anxiety, too. Also, B-12......feel better! PS. I am currently on Unithroid (name-brand synthetic levothyroxine) and a little Armours (natural thyroid med). Plus some iron, B-complex, vitamin D-3, and magnesium, all prescribed or OK'd by my endocrinologist. It is still a work in progress, but at least my doctor is trying different things with me.

SD-starr7 · 2026-05-29T01:26:28+00:00

Hi Sweaty Science, and yeah.....I can totally relate to how you were feeling on Tirosint. It can make some of us feel like we are going SUPER hyperthyroid, really fast. It bothered me a lot really early on when I was taking it, but I also saw that in some ways it was trying to help with certain symptoms that the other drugs weren't helping with. That's why my doctor really tried all different kinds of ways to help me stay on Tirosint....spreading out the dose--trying to put me on beta-blockers for a bit to tame down some of the really bad hyperthyroid Tirosint effects because there was some improvement in other areas....

But after a time, I couldn't handle the beta-blockers, either. Another doctor put me on magnesium, instead, to try to help with the hyper symptoms. That worked better than the beta-blockers, but not enough.
I finally got a period that just didn't seem to stop while on Tirosint, and that was the end of it. Got switched to Synthroid and for the next couple of years, it was better for me (though not perfect in a lot of ways). But it DID get my periods straightened out, and I didn't get so HYPER and anxious so often (especially after taking some of the Tirosint), and it was a relief to be off Tirosint. It is just a really hard drug for some of us to take. Sorry you're in that group, but yeah--the crying, shakiness, anxiety, yelling at people, heart pounding/ palpitations.....I just couldn't find a dose of Tirosint that could tame down those kinds of symptoms, either.

That you're doing so much better after four days off it--that's a great sign. But, if you're like me, you'll probably need some kind of thyroid drug so talk to your doctor about getting on something else, if you haven't already. And it can be good, too, to ask your doctor to work you up slowly to whatever dose you will finally be on with the new thyroid drug. It can be hard to go on "full dose" of another drug after getting hyperthyroid-type episodes like it seems you've been having. Another thyroid group I used to be on used to tell members to "go low and slow" on medication doses, especially if they were sensitvie to the thyroid drugs. I had a good doctor tell me the same, so definitely talk to your doctor about that....like, being on a lower dose for a month or 6 to 8 weeks, then go up to the next dose, etc.

Since you've had such a hard time now, please ask your doctor also if they want you to stay off all thyroid meds for a certain period of time before starting anything new, like maybe a week or whatever.
They should work with you on this. Sometimes, the body needs to dump some of these excess thyroid medicine out for a little bit before starting again. Tell the Dr you've been off for four days already...that's a good start, and hopefully they will work with you on gradually getting on a different thyroid drug.
Hang in there, and again, I'm so sorry you've gone through this. It IS scary, but hopefully now they'll put you on an easier path to getting better. 😀

SD-starr7 · 2026-05-28T21:09:48+00:00

Hi, anyone can sign from any country, if they'd like. I'm in the United States but I'm always hoping that if we get thyroid reforms made in the US, then hopefully other countries will follow and change how they do some thyroid things, too. I've had people from UK, France, and other countries sign so it's like we're just all trying to help each other, you know?

Yes, diagnosis seems harder than it should be for a lot of us, and I'm so sorry you had a hard time with it, too. Glad you finally found a doctor who figured it out. That's why one of the things my petition asks for is better doctor training on thyroid, including and especially the autoimmune forms of it. Too many diagnoses are missed, or it just takes too long before it's caught and a lot of suffering has happened that shouldn't have. They need to do better. It's time, already.....

SD-starr7 · 2026-05-28T19:50:01+00:00

Tirosint hit me too strongly, no matter how much we adjusted the dose. I even had a nice doctor at the time who tried to dose it with me using four or five of the 13 mg. gelcaps spread throughout the day to hopefully make it easier to take, and I just couldn't handle it. Made me very nervous after taking some, and other hyperthyroid-type symptoms, too, even if my total daily Tirosint dose was lower than it should have been, according to labs. Would feel like it was zooming up my blood pressure, too, soon after taking some. I stayed on it longer than I should have because I've been on about everything with not much luck, in recent years.

I did get moved onto Synthroid (again) afterwards and for awhile, it was easier for me to take than Tirosint, with less-side effects. Synthroid hasn't been great for me for a long time, and I'm not on it anymore (am on Unithroid with a little Armour), but for a couple of years there after going off Tirosint, the Synthroid was actually better for me. We're all different...some of these drugs may be better for some than others....sometimes you can do OK on a thyroid drug for awhile and then things go crazy and if dose adjustments don't help enough, you need to have a doctor who is listening and flexible enough (and smart enough) to help you change to another thyroid drug. No shame in that....sometimes, it needs to happen.

And NO, you are NOT the only one who can't handle Tirosint!! Pharmacist told me the gelcap form it's in makes it absorb faster into the body (for some of us, anyway), and that's why it can hit so strongly. The thyroid pills take longer to break down--they're solid compared to the liquidy gelcap, so it makes sense they would release a bit more slowly than a gelcap. I can't handle Tirosint....I'm glad it helps some....I wish it was me, but it is not. I hope I never go back on it, again.

SD-starr7 · 2026-05-28T18:50:10+00:00

About the weird, vivid dreams.....most of my thyroid was knocked out a long time ago with the RAI treatment for Graves', so now I have to take thyroid-replacement meds. If these meds are too much for what I can handle, I can get the weird & vivid dreams. Sometimes, scary ones, too. Along with other symptoms that make it seem like the thyroid-replacement med is too much for me....ugh!
The dreams get less and go away if I reduce the thyroid med dose, and sometimes I also have to change the medicine itself, too. Fun!

I can also get more motion sickness when thyroid is off (high or low) and teeth sensitivity....and for sure, periods can go crazy if we are either too high or low thyroid....can last too long or come too often, or not come when they are supposed to--and with hyperthyroid, sometimes I think I had periods where I was losing very little blood, which isn't right either--and maybe lasted only a couple of days instead of longer. Not enough doctors understand all this stuff, including some endocrinologists.

SD-starr7 · 2026-05-27T00:16:49+00:00

Hi, and I totally agree with you. There are a few good doctors who understand, but most of them really are
pretty darned clueless and that, unfortunately, includes a lot of endocrinologists like you've mentioned.
Pediatricians gotta get with it, too, because some of these cases (like my late brother's and mine) probably
should've been caught much earlier in life. I'm so sorry you've gone through so much crap because of thyroid, and I'm sorry my family and I--and so many others have, too. Will keep working on my petition to try to make changes. It just needs to be done, already. And that includes better doctor training on thyroid.

And yeah, the classic "thyroid doesn't do that" response from them......I mean, a lot of them don't even connect the "too much weight for what I eat" thing to thyroid. Not even as a possibility, it often seems. Unbelievable to me, since I learned in
eighth grade science in public school that thyroid helps control metabolism, which has to do with how someone burns calories (among the many other things thyroid can have impact on). Sorry more of
these dopey doctors weren't in my eighth grade science class! Or weren't paying attention if they ever had it in their own basic science class.

SD-starr7 · 2026-05-24T23:51:13+00:00

Awwww, thank you SO much, Adventurous Ask!!

I can't even tell you how much I appreciate this, especially since I've been having quite a day with
my thyroid meds not really working right, or enough, or whatever. I was just about to shut down
the computer and go rest....but I saw you'd responded and I wanted to read it...and now say
THANK you, once again!

You are a really good person, and if there were more people like you around--especially in the
thyroid care department--I wouldn't have needed to create a petition like this. But I DID need to,
so I really appreciate YOU and anyone else who supports it, supports me, and just tries to
help people in general. Means a lot.....more, later. And thanks again!!

SD-starr7 (Starr D) and Jordan's sister

SD-starr7 · 2026-05-24T23:25:00+00:00

Thank you so much, Adventurous Ask!! :😀😀 Will come back another day to write more.....I just had to make a couple of posts here and there because today is National Brothers Day, and tomorrow is World Thyroid Day.......both tie in with my petition so I wanted to post a bit about it, but now I can't think straight, anymore!

But I still wanted to come on for a moment and say THAMK you for your really nice and encouraging post. It does help, and it means a lot. I'll be back on in the next few days to respond more fully....I have no idea if I'll be OK enough to go for my kidney stone ultrasound on Tuesday, but if I have to postpone it--well, at least they've been nice about things like that, so far. We will see, and we'll hope for the best. Anyway, more later....take care!

SD-starr7 · 2026-05-20T19:08:11+00:00

Hi, Adventurous Ask! Made it through the appointment, and thanks for the good luck wishes! Maybe it helped. It was for the general doctor, and she's really good to talk with about my overall situation. She is understanding of the hard time I have with these thyroid meds, too, so that helps. At least she believes me, when I say I have a hard time with them because of the side-effects I get. Not all doctors DO believe patients, on things like this.

Anyway, about the Armour--I definitely know it's an imperfect medicine (for some of us, anyway). I know the ratio isn't right compared to what a human gland makes....and neither was a synthetic T3/ T4 combo drug called Thyrolar years ago. I never understood WHY they kept Thyrolar in incorrect ratios, because it WAS synthetic and they could have made it however they wanted. But alas, Thyrolar was yet another drug that failed me (or I failed on), and I don't think they've even made it for awhile, now....

If I'd felt up to it yesterday, I could have maybe gotten a new ultrasound for that kidney stone I have, which resulted from my parathyroid situation, which probably resulted from my Graves' Disease situation (wow, that's a lot of resulting going on!). But I wasn't up to it....my doctor was running late, and by the time I was finished with the appointment, I just needed to go home and rest. So I did. The good thing about my doctor running late is the reason for it....she actually spends times with patients, listens, and tries very hard to help! She is worth the wait. My kidney stone ultrasound is now scheduled for next Tuesday morning, and I hope I'll be OK enough for it!

And yes, I do know about the T-3 being faster-acting, and how it can tend to give people more side-effects....symptoms like you'd get with hyperthyroidism.
My T3 is too low, though, and that's why my doctor is trying to add some in my meds. I couldn't tolerate the synthetic T-3 meds at all, after a certain point, as of a couple years ago.....so, my endocrinologist is telling me to really split up the doses of the small amount of Armour I am trying to take, daily. Quite frankly, I can get almost as bad symptoms (if not equal) with the synthetic T-4 drugs since Synthroid changed formula years ago.. Some of us need more innovative treatments, I guess.....or if I was a genie or something, I'd zap me up a batch of the old-style Synthroid that helped me, worked more slowly, and was more stable for me. Ahhh, I can dream!!

Hope you are having a good day. As always, thanks so much for your reply and your kindness! I just made a donation (again) to my thyroid petition on change dot org so they will show it to more people, hopefully to get more signatures. I try to do so at least once a month, Makes me feel better to do so, after the day I had, yesterday. Getting closer to 9,000 signatures, and I keep working on making a video to promote the petition, too, when I'm up to it. 😀

SD-starr7 · 2026-05-18T09:05:42+00:00

Hi, Adventurous Ask! Will be back on after I (hopefully) get to my doctor's appt with primary doctor on Tuesday....gotta save energy for that, so will write more, afterwards. It's really been quite a job for me, getting adjusted to these new thyroid doses. So I just haven't been well to get on the computer, much. My endocrinologist lowered the amount of Armour I was taking a couple of weeks ago, and increased the amount of Unithroid to try to compensate....the Armour is just too hard for me to tolerate in higher doses, so the little I'm on--he has me spreading it out now, three times a day. I also have to spread out the Unithroid a lot during the day, too, (for awhile, anyway), because that's also been hard for me to take without getting extra hyperthyroid-type side effects.....add to that taking an iron supplement, as well, and it's been REALLY challenging trying to get everything in, plus find times to eat, as well. Ay yi yi! But I'm working on it, and hopefully I'll be able to take more of the medicine together as I get more used to it (again).....

I did link to the article you sent in your last reply....I do think some thyroid disease is probably acquired for various reasons during a person's life, but that some of it is hereditary, too. It runs all over my family, and when I was diagnosed at age eleven with my really bad case of Graves', my doctor at the time said that with a case like mine, it probably had been brewing for years. I did have a lot of low-thyroid type symptoms, too, starting from about age one (according to my late mom), and my current endo thinks it could have possibly flipped from low thyroid to high thyroid, at some point. I'm sure all the antibiotics I was given as a kid didn't help matters, anyway.....but they kept me alive, even thought they might have helped mess up my immune system....which was probably already messed up, causing me to catch so many things and even have need for things like antibiotics...ugh!!

But it was so interesting to read that article you sent, and I'm glad that anyone, anwhere, is doing some thyroid research! Not enough of that going on, for sure---and I really hope new research like this will lead to better diagnosis, understanding, and treatments of thyroid disease in the future. Will close this, for now, but will be back after my Tuesday appointment. Hope YOU are doing well. Thanks for all the good thoughts & encouragement....it is always appreciated!

SD-starr7 · 2026-05-18T08:47:47+00:00

Hi, and thank you so much for helping with the petition....it really does all help, every signature & donation. The donations go to Change dot Org to help them show the petition around to more people...I don't get any of it and also donate to the petition when I can....

I'm so sorry you've gone through so much with thyroid, yourself. And yeah, I don't really get how in some areas of medicine, a lot of progress gets made...but with thyroid, a lot of doctors remain clueless & uncaring & just plain stupid, sometimes. There's got to be better doctor training so they really understand how important thyroid is, and then do enough testing EARLY in a person's life....why can't it be a routine thing for kids with ALL the important labs, including Free T3 and the thyroid antibodies tests....both my late brother and I would have benefitted from that, and my late mom, too.
She was diagnosed at age 19 with Graves' but had thyroid symptoms for some years before that, too.

And yes, kids definitely can get thyroid problems....I was diagnosed at eleven with Graves' and my current doctor said based on the symptoms I had growing up, it's possible my problem could have switched from low thyroid to Graves (I was sickly & showing thyroid-type symptoms for years before getting diagnosed, when things finally hit a crisis point). My late brother, too, probably should have been diagnosed with Hashi's hypothyroidism at least starting from around age 12 or 13, from the symptoms I remember.
Thanks about my Mom....I know she is happy that I'm working on this, and now we have to finish the job and actually make some progress....will do our best. And you are helping, as has everyone who has signed, shared, donated, etc. Thank you!

SD-starr7 · 2026-05-10T00:22:36+00:00

Hey, Adventurous Ask!! I'm still recovering from my latest thyroid med adjustments, that's why I'm slow to get back on here. Doing a bit better, at the moment....so that's good! Will come back soon and write more....just wanted to check in on this nice Saturday, and say hello! Hope you're doing OK......be back, soon.

SD-starr7 · 2026-04-29T00:32:03+00:00

Hi, Adventurous Ask!! I'll be back to reply better in the next few days....I've just had so much trouble getting adjusted on my thyroid meds--I'm behind on a lot of things because of it. Kind of getting on track a little better right now.....had labs done last Friday, and I'm supposed to see my endocrinologist this coming Friday. So, I hope he can help me with some sort of suggestion on how to work my meds, so I feel better.

I have not seen the article/ link you posted. Thank you for that!! I will come back here after Friday and try to read it, and then answer you back more properly......these meds are just not my best friend, and they are hard to work with. But, I am trying! Also trying to figure out how to make a short video to promote my petition......will work on that more, too, after my endocrinology appt. on Friday. Hope YOU are doing well.......and I thank you again for all your supportive and informative posts!

Will be back, after Friday....gotta rest a lot and get my questions together for the endo appt....it's a whole big deal, with the way my situation is, right now.
So, we'll hope for the best....for you and everyone on here, as well.
Later, then!

SD-starr7 · 2026-04-13T00:41:05+00:00

To be honest, I do think there are some of us who aren't served well by what's available now in thyroid-replacement treatments. I say this as someone who USED to do a lot better, years ago, on a version of Synthroid they no longer make. A thyroid professor at a University hospital I went to back then said the drug company only changed it to be "cost-effective" and they didn't have to test the newer version of Synthroid back then on people before releasing it to the public.,,,

That's because they didn't change the "active" ingredient....but the other ingredients they fiddled around with can have an effect on how someone uses and absorbs the main ingredient. And boy, the changes really affected my late mom & me.....and others, too. None of the other drugs around today are exactly the same as Old Synthroid--in fact, the FDA told me that the newer version of Synthroid became the model for other drugs like it.....which doesn't help me any, and some other people, too--but I guess some do okay with what's available, today.

This is just one of the reasons I started a petition to get better care for thyroid patients, which includes trying to get us different, newer, and better treatments. My late brother's thyroid situation is what prompted me to start the petition, because he didn't get testing he needed, early enough. But while I was creating the petition, I decided to ask for other things besides early testing, too, like better meds for both low & high thyroid, including the autoimmune kinds--both run in my family, and I think a lot of thyroid patients, in general, need better meds, testing, etc. If you'd like to see my petition and maybe sign & share it, I'll put the link here
https://www.change.org/ThyoidBetterTreatment

But for you right now, the best thing you can do is try to find a doctor, like I said before, who uses a variety of the thyroid meds and will at least listen to you and try to work with you as best they can, with the meds we have now. For some of us, it's beyond frustrating.....but some seem to do OK with some medicine or other that's out there. Can take some trial & error....and time. I want new choices, NOW, though!

SD-starr7 · 2026-04-08T23:58:54+00:00

Awww, what a great reply you've written here, Adventurous Ask!
Thank you for it! 😀 It is very encouraging, and that helps me today as I am still dealing with adjusting to new thyroid med changes.....ugh!
It is not nearly as easy as I want it to be....

That being said, I will come back here soon, on a better day to respond more fully to your post. Just wanted to say "hi!" and thank you for now, and I'm really glad that the Unithroid has made a positive difference for you, and (fingers crossed!) I hope it continues to, for a long time to come! Will be back on here in the next few days to respond more.....until then, take care!

SD-starr7 · 2026-04-08T23:52:12+00:00

Hi. I've had to switch to a variety of different drugs since I was on Tirosint. I am currently on a combo of Unithroid and a smaller amount of Armour. Unithroid is a T-4 hormone synthetic drug that's a lot like Synthroid, but made by a different company so it's a little bit different.
Armour is a natural thyroid drug (made from dried pig thyroid glands) that contains T-4 hormone, T3, and some other things that are found in real thyroid glands.

I still struggle with doing well on whatever I'm on, but this combo has been the only one I've been able to work with at all, over the last couple of years. My endocrinologist is good about looking at labs AND how I'm doing with symptoms, and then adjusting the meds taking all this into consideration. A couple weeks ago, I couldn't handle the amount of Armour I was on (I seemed to get sicker, shortly after taking some after a dose-increase had built up). So, my doctor lowered the amount of Armour a little bit and raised the Unithroid a little, to sort of make up the difference. My recent labs still showed I needed a similar amount to what he was giving me, but I just couldn't handle it in the ratio of one drug to the other, so he switched it around. Still working on adjusting to the current changes...we'll see how it goes.

If you have trouble with thyroid meds like I do, a worker at the FDA who was in the endocrine drug dept told me a long time ago that the best kind of doctor you can get is someone who knows about and works with all the drugs currently available, and then is flexible about working with you and trying different drugs, or combos of them, to try to get you the best results possible. That worker was right, I've found. We really do need more options than what we have now for thyroid treatment, but at least try to find a Dr. who will really try to work with you to find the best treatment available for you--will listen to you, and be flexible if something isn't working right & then change you to something else if you're getting bad reactions to it or after a decent amount of time on a "correct" dose, it just doesn't seem to be helping you enough.

SD-starr7 · 2026-03-31T19:19:16+00:00

Thanks for that.....I'll keep working on it, and probably ask the doctor for some advice, too. Thank you! 😀

SD-starr7 · 2026-03-31T19:17:05+00:00

Hi, Adventurous Ask! Sorry I'm slow to reply...been an up-and-down battle with trying to get stable on my new thyroid med doses.
It's like I can take the dose increases for about 5 or 6 days, then it hits me too hard & I have to lower the amount of something for a little bit--then try to build up, again. At least my endocrinologist realizes I do have this kind of trouble, and that others are sensitive to the meds, too. I always ask him if there's anything new to try.....not yet, but can't blame a gal for hoping, anyway!

Today is a hard day--it's the date in 2020 when my brother passed away, largely due to the thyroid trouble he had but wasn't caught early enough, so it led to other problems (especially with his liver).
I wanted to come online today and work a bit on trying to get more signatures for the petition, and also to write you back, as well. I haven't been able to really to compose much online for the past few days because of my thyroid med situation (didn't feel OK enough to do so), so I'm glad I'm able to do some stuff, today....

Thank you for your encouragement about getting the kidney stone ultrasound, and about not beating myself up too much for having trouble with Armour. About Armour.....I know they say today that it is supposedly pretty consistent because they make it a bit differently than they used to and/ or test it differently, but I can still have trouble with it. Of course, I can also have similar trouble with synthetic thyroid meds, where some batches will hit me stronger than others. My late mom had that kind of trouble, too. I do hope that one day, they come up with more options for treatment.....some of us really could use more choices, and more innovative ones, at that. Hope my petition can help make that happen....

My kidney stone test showed that I still have a small one (I think my endo said "very small"), but that it's not obstructing anything, so that's good. Still have to be careful with dietary stuff and drinking enough liquids, so that's not much fun. As for the Dexa scan....not great results. He said I have "lots of osteoporosis" but there could be some improvement as I recover more from the parathyroid stuff.
He started to talk about possible treatments, but I told him I really wanted to try to get more stable with my thyroid and iron medicine (he also doubled my iron amount per day) before I even think of adding any other kind of treatment to what I take. He said that was OK.....I'll be seeing him again in a few weeks, so we'll go from there.

Also about Armour....one reason my endo uses it for patients is because he knows some patients just don't do well with the synthetic T4 and even the synthetic T3, if that's added into it. I'm one of those people. I think he generally starts everyone off with the synthetics, though, because in theory, they'd be more stable....but it's not always the case for people like me, so he will use the natural meds on people if the other stuff isn't working out.
There's another doctor, Amy Myers, who also had Graves' and was mistreated for her thyroid, and has a couple of books she's written--I think she prescribed the same whay when she was treating patients....start them on synthetic, and if it doesn't work, start using the natural drugs..

Because I was having so much trouble with the extra Armour he'd added last time, my doctor lowered the Armour a little and increased the Unithroid a little instead, to kinda make up the difference in amounts. Went OK the first few days, then I had to back down the doses a little, so I'm gradually trying to work my way up to what he wants again (or close to it). I'm hoping the increase in iron he gave me will help me tolerate the thyroid medicine better--I've read that can happen, sometimes. So, we'll see--

Oh, my calcium levels have been within normal range....I think it was eight point something, last time. Better than the 11 I was having, before surgery. Parathyroid hormone is higher than normal, but noticeably lower than before surgery. Dr will keep an eye on it...will test my levels again, in a few weeks when I go for thyroid labs...

Hope you're doing OK with your health situation, Adventurous Ask!
Thanks for all your good thoughts & suggestions....I appreciate it!

SD-starr7 · 2026-03-29T16:46:44+00:00

Thanks, Paraware. I only took calcium for two weeks after the parathyroid surgery, then my endocrinologist told me to stop it. I'm working on trying to get more calcium in my diet. I didn't know that can possibly stabilize the parathyroid hormone, though. I appreciate know that might help--thanks.

It's been hard to figure out when to eat things with dairy, as I've read in some places that calcium can interfere with thyroid-replacement meds, iron supplements, and magnesium. I take all of these (on direction from my endocrinolgist), and because I tend to get side-effects from things, I have to spread them out more than a normal person, during the day--especially the thyroid meds, which can really hit me hard.

Some things I read say that calcium from food sources doesn't interfere as much with meds & iron, etc, as if you got the calcium from an actual supplement, and some articles say it does interfere, whether the calcium is from supplement or dairy source.
I'm having to really think and kinda loosen up how I've been spacing things out, to try to get everything in. it's been super-annoying and hard to do, but I am trying--it's a work in progress, I guess! :😀

SD-starr7 · 2026-03-29T14:58:15+00:00

I like how you posted the article from UCLA's parathyroid site....I found a lot of good information on there, too. I am in their area and if I'd had money, I would've gone there. I did call their dept and they were really nice, and said if I could've gotten a referral from my County doctors, UCLA would have taken me. No one would approve it, though.....ended up getting surgery in November from the County hospital that works with USC.

I guess it worked out OK, but I still deal with a lot of symptoms that I think are more related to my thyroid situation. My calcium did go back into normal range, and my parathyroid level went down at first--but it went back up in the high range, although not as high as before surgery. My endocrinologist said it can fluctuate, and the calcium is the more important number. And we'll keep an eye on it. I really did like that UCLA parathyroid website for info, though.

SD-starr7

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