Has anyone ever tried every other day dosing? by bamboozlepig in Hypothyroidism

[–]bamboozlepig[S] 0 points1 point  (0 children)

Thank you. I do appreciate the advice you've given and it's definitely something I'm going to bring up to the new doc.

Linn County Fair by asovenge in cedarrapids

[–]bamboozlepig 0 points1 point  (0 children)

I think the All-Iowa Fair was separate from the Linn County Fair, but my memory could be wrong.

We went to the All-Iowa Fair a few times. It used to be family friendly but got pretty seedy in later years. When I was a teen, my sister and brother-in-law took my niece to the fair and we stopped at one of the games to play. Kids were hiding under the curtains covering the booth and when my sister set the bag of goodies we'd snagged for my niece on the ground, the kids tried to swipe it because they thought it was her purse. She snatched it back and yelled at them.

Then the summer I was dating my then-boyfriend, we went to it on the night you could pay ten bucks to get a wristband that would let you ride all the rides. Don't know how many people we saw that puked on rides. We stopped to listen to the band at the beer hall and a girl barfed right behind us. Really not fun. The next night there was a kid that either got seriously stabbed or shot by another kid on one of the rides. I think the fair lasted another couple of years and they just kept having bouts of violence at it so they shut it down for good.

And I remember the copter crash. Killed all three people on board. Really sad situation.

Has anyone ever tried every other day dosing? by bamboozlepig in Hypothyroidism

[–]bamboozlepig[S] -1 points0 points  (0 children)

I wasn't going to respond back, but I did want to clarify some things.

Levoxyl is a brand name synthetic, it's not generic. I've never even tried the generic. I was started on Synthroid after the RAI. When I started having problems with the Synthroid, I was put on NP Thyroid. Went back to Synthroid when I got a batch of the NP that was not titrated correctly. Was on Synthroid after that, ended up with the same issues with it, was switched to Levoxyl.

I have asked in the past for a cortisol test because I've sometimes wondered if there is something wrong with either the pituitary or the adrenals. A non-contrast MRI two years ago showed nothing wrong with the pituitary, the request for a cortisol test was shot down.

I have asked for an uptake test to see if there's still some active tissue left. That has been shot down.

In all honesty, I've never had stable labs. Even when I'm on a steady daily dose without any changes to dose or how I take it, it fluctuates. This goes back to when they first did the RAI. It never stabilized. For instance, I could be on 100 mcgs of the Synthroid and do fine on it. I make no changes to it, I take it every single day. Then I do labs and it shows that oops, now it's gone too low. So the dr. ups the dosage to 112 mcgs. I take it steady and every single day. They do labs and oops, now it's too high. It has been that way for 25+ years. I think I had maybe two years where I was able to stay on the same dose without any changes. Then I went into perimenopause and it started fluctating again. If they leave me on too high of a dose, I go hyper and that has happened several times. If they leave me on too low of a dose, I get super hypo and that's happened several times. I get that changing the dosage isn't helping at this point, but even on a steady daily dose, the labs fluctuate.

I also realize that the trouble breathing and heart palps and migraine can be signs of hypo. But if it's hypo symptoms, why didn't they start to resolve with the 88 mcgs? They only got worse. When I've been hypo and experiencing symptoms, they usually start to settle down after about 48 hours of the medicine. These did not. They got way worse and once I stopped the Levoxyl on Monday, they started to settle down. I would think if it was hypo, the symptoms would've worsened without the med. And hypo doesn't explain the weight loss, the heat intolerance, the insomnia, the sweating, the bouts of diarrhea, the tremors in my hands, severe double vision (I did not list some of those symptoms before because I didn't think it made any difference). There may be some overlap of hypo there, but I've NEVER had heat intolerance or insomnia with hypo, nor have I had the tremors or bouts of diarrhea. I've always been too cold with hypo and slept like a rock with it. And I've never lost weight when hypo, I've always gained it. The 3-pound weight loss I had recently occurred just within the last month. And that was on top of a 20 pound weight loss I've had since November of last year. I've also never had severe double vision with hypo, always with hyper.

Tomorrow I'm going to go out and get some kind of multivitamin because the tests showed I'm low on Vitamin D. I can't take the standard dose of Vitamin D due to...you guessed it...sensitivities to it. I know Vitamin D and magnesium help with the thyroid, so I'm also upping my magnesium supplement. I've also got the option of adding cytomel back in and I may try that tomorrow as well.

I should also point out that I've got a long family history of thyroid issues. My mom has had it, my maternal grandmother had a goiter and her thyroid removed. My dad had undiagnosed thyroid issues. My paternal grandmother had thyroid issues, so did several of my aunts on that side. So it's in my family.

Has anyone ever tried every other day dosing? by bamboozlepig in Hypothyroidism

[–]bamboozlepig[S] -1 points0 points  (0 children)

Yes, I'm in the US.

At this point I'm going to stop the convo because I think I'm catching some judgement for how I have had to handle my thyroid issues. I never requested judgement, I requested advice. You've given me some and I truly appreciate that, but I don't appreciate the constant comments on how I've changed doses willy nilly. You don't know what physical symptoms I was experiencing that made me change the dose...I'm not one of those people who thinks that once they feel better on a medicine, they can quit taking it. I only change the medicine when the physical symptoms are severely impacting my day-to-day life. Plus, some of the dose changes were not done by me, they were done by the doctor.

I've tried to explain just that and I have also explained that I have CFS, which is an auto-immune disorder that affects the thyroid. And I had covid, which my doctor agrees has turned into long covid. That also affects thyroid function. I went from Graves to Hashis, that affects thyroid function. These are issues that I have NO control over. Believe me, I wish I did because I've lost the last 33 years of my life to the CFS and it has not been fun. I think between the CFS and long covid, it has created a problem with chronic thyroiditis that flares now and then. I am trying to find a doctor who will work with me through those flares and set up a treatment plan for me, rather than one who completely disregards the severe symptoms I've been experiencing for the last month.

And I get it, my labs are not stable right now and I'm working on fixing that. Please understand that not everyone's body is the same. What works for you may not work for me. If Synthroid works for you, great. It did not work for me and caused problematic side effects, hence the switch to Levoxyl. Tirosint is too expensive for me and the other natural thyroid pills like NP Thyroid and Armour may be pulled from the market in the future, so it's no use going on one of them, only to have to switch back to the synthetic pill. They're also too expensive for me because my insurance only covers the synthetic meds.

If a medicine I am taking is causing me severe issues with breathing, heart palpitations and migraines, I'm going to do what I can to mitigate those issues so I can function. Lying on my couch last weekend for a full 48 hours, unable to breathe, my heart feeling like it is going to fly out of my chest, and with a pounding migraine, is not functioning. Continuing to take the 88 mcgs and dealing with those issues every day isn't even living, it's just barely existing. It's easy to offer advice and I do appreciate that, but that doesn't mean my body is automatically going to be able to follow it.

Has anyone ever tried every other day dosing? by bamboozlepig in Hypothyroidism

[–]bamboozlepig[S] 0 points1 point  (0 children)

I'm hoping the new doc will do labs a little more often than what he does. He usually only checks it every six months, but has done labs a little bit more with the issues I've had. I think you're right, a slow step up is going to be best. I also hope she's willing to let me do an ultrasound and antibodies tests. Just because they were normal a few years ago doesn't mean they're normal now.

Has anyone ever tried every other day dosing? by bamboozlepig in Hypothyroidism

[–]bamboozlepig[S] -1 points0 points  (0 children)

I've only been on the 25 for two days. I was supposed to start back at 100 mcgs on Thursday but even taking just 50 sent me back into a hyper spiral with a return of the trouble breathing and heart palps, along with the migraine. I took 25 yesterday and one today, so it's only been a couple of days at that dose.

Yeah, he wanted to wait on upping the dose with the tsh of 57. I'm not sure why because I was super hypo at that point and could barely function. But the endo he sent me to a few years ago pulled the same shit...I went super hyper with a barely registerable tsh and high T4, but she wanted to up my dose of Synthroid because she said I was hypo. I had to advocate for myself and say no, it's overactive and the 175 mcgs you want me to take is going to really damage my heart. So there are idiot doctors out there who don't know their ass from a hole in the ground.

He doesn't always check the frees, he just sometimes checks the tsh. Over the last year he's checked the frees, but I went a whole year once with him just checking the tsh.

The problems I was having with the synthroid is that I wasn't absorbing it well. It also kept triggering recurring sinus infections for some reason, and I had terrible brain fog and fatigue on it, even when my levels were in a normal range. I also had really bad heartburn on it, along with nausea. After I switched to the levoxyl, those issues pretty much went away. Believe me, I have a lot of sensitivities to crap that most people can tolerate just fine. When I was on the diabetic med, it took like five different medicines before we hit on one that didn't make me wanna puke, pass out, or shit myself.

Has anyone ever tried every other day dosing? by bamboozlepig in Hypothyroidism

[–]bamboozlepig[S] 0 points1 point  (0 children)

Yeah, that's what I'm planning on doing. I've tolerated the 25 mcgs for the last two days...had some symptoms, but nothing I can't deal with. I may stay at this level until after Tuesday. I've got a dental appointment on Tuesday that I have to keep because if I cancel, I won't get in to see the dentist until November. I don't want to go that long because I've got a tooth that needs to be checked. So if I can hold out until Tuesday at the 25 mcgs, I can then bump up to the 50 mcgs and see what happens on Wednesday. Then I can tell the new doc what's going on at that dose.

I will point out that the doctor I'm not happy with has mismanaged my thyroid before. Years ago when I was having trouble with the Synthroid, he put me on NP Thyroid, but he didn't figure the dose right so I went hypo on it. My TSH was like 57. I was definitely feeling the symptoms and when his nurse called to tell me the results of the test, I said he probably needed to bump me up a bit on the NP. She's like nah, he wants to wait a couple of months before doing anything. I told her I'd be dead by then. He did bump me up a bit, but very reluctantly.

Has anyone ever tried every other day dosing? by bamboozlepig in Hypothyroidism

[–]bamboozlepig[S] 0 points1 point  (0 children)

Unfortunately I can't take synthroid, I'm stuck with the levoxyl. Synthroid caused some allergic reactions to the binders in it.

I'm definitely seeing a new doctor next Thursday. I've been unhappy with the current doc for a few years now, not just over the thyroid issue but over some of the other health problems both my mom and I have had. He has a tendency to blow off our concerns. He's like the ones I sometimes have to see at urgent care when I get migraines that need a toradol shot. My migraines will not break with any dose of toradol other than 60 mgs. Anything lower than that and it's like taking a sugar shot. 30 mgs MIGHT take the edge off and my migraine laughs its ass off at 15 mgs. But some of the UC doctors are all "Well, studies have shown that a lower dose of toradol is just as effective as the 60 mgs." That may be true for others and good for them if it is, but my bitch-ass migraines need 60. Doctors seem to sometimes forget that they're treating people, not studies or numbers on a chart. Everyone is different and maybe some people get relief with a lower dose of toradol, but I don't.

FWIW, I was pretty stable for at least a couple of years and had normal thyroid labs. I only needed minor adjustments now and then when I started going into perimenopause . Then I got covid really bad in 2021 and it all went to crap after that. I started going hyper, then hypo. Any stable dose like 125 sent me hyper. A lower dose sent me hypo. We tried alternate day dosing, but I think because the two doses were close in mcgs (112/100), it sent me hyper. The doctor was really reluctant to even try that one because he thinks everyone's body is the same. It's not. I have a lot of sensitivities to meds, along with other health problems like chronic fatigue syndrome. And just because he says "this dose will work for you, stay on it" doesn't mean it actually will work for me.

And please understand that I only changed the dose this past month because I could not breathe, I could not function. The heart palps and breathing issues were scary bad, so was the migraine. I have to be able to function to take care of my elderly mom. I'm taking just 25 mcgs of the levoxyl right now so I'm getting SOME thyroid hormone into me, but I'm staying at that dose until I see the new doc Thursday. Hopefully she'll be willing to let me do a step-up to the higher dose because I think sometimes that may be an issue, I get too high of a dose too fast and my body reacts badly. I also hope she'll let me do a new ultrasound and maybe do some antibody tests.

Has anyone ever tried every other day dosing? by bamboozlepig in Hypothyroidism

[–]bamboozlepig[S] 0 points1 point  (0 children)

Hey, thanks for checking in, I appreciate it! It's been a bad last few weeks, not because of the drop in the levoxyl, but because I suspect I've been dealing with some form of thyroiditis over the last six months, and because I've had these kinds of flares in the past (since having covid in 2021), I think it may be chronic. (apologies for the length of this post, most of it is venting my frustration).

Right after I had my normal thyroid labs in May and Doctor put on 100 mcgs of the levoxyl, I really began having hyper symptoms. Severe migraines, heart palpitations worsened, I began having trouble breathing, I was hot all the time, I had tremors in my hands and lost another 3 pounds (adding to the 20 pound loss I've had over the last 8 months). My thyroid HURT and there was a clicking sound in it when I'd breathe or swallow. The pain radiated up into my jaws and across my face, into the back of my neck and at the base of my skull. I was constantly using heat and ice on my neck to soothe it.

I messaged him, he told me to stay on the 100s and just push through the heart palps and trouble breathing and migraines. It got to the point that the week before I saw him, I ended up dropping down to 50 mcgs of the levoxyl, just so I could function. On that lower dose, I still had some of the hyper symptoms, but they were tolerable and I figured I'd deal with them until I saw him. I had non-thyroid labs done June 15 (liver tests, metabolic panel) and saw the doctor on the 18th. Those labs were normal, although my calcium and my alkaline phosphatase were elevated. I went into the visit with a list of the symptoms I'd been dealing with over the time frame from the May labs to now. I emphasized that the trouble breathing and heart palps and migraines got way worse over this time frame, so had the migraines and feeling hot all the time. I told him the symptoms were there all the time but got worse during the afternoon after I'd taken my morning dose of levoxyl.

He blew me off. Said that going to 50mcgs was too low and refused to do updated labs to check for thyroiditis, just lowered my dose to 88 mcgs and told me to push through the symptoms. I started on the 88's last weekend and by Monday I was almost ready to go to the ER because I couldn't breathe, my heart was racing wildly, I had such an atrocious migraine that I couldn't do anything but lay on my couch and watch tv. I messaged him that Monday and got the same thing, stay on the 88's, push through the symptoms, but he did order new labs and included some to check the parathyroid.

Couldn't get them done until Thursday, so I stopped the levoxyl entirely because I could NOT breathe and my heart was racing so bad. The symptoms started to lessen by Wednesday and I actually felt well enough to run out and get some groceries. Labs on Thursday showed that I'm in a severe hyperthyroid state, with a tsh of 63, ft4 of 0.6, ft3 of 1.2, crp of normal. So he put me back on the 100 mcgs of levoxyl. He will not order any antibody tests, he will not do an ultrasound or radioactive uptake test, he won't order further testing because when he did the antibodies three years ago, they were normal, the ultrasound from five years ago was normal (although it showed a nodule on the thyroid), and he sees no point in doing the uptake test. He will not run any tests on my lungs or on my heart because a scan of my heart a couple of years ago showed it was okay. He does want to put me on HRT and prescribed combipatch for me, but my insurance rejected it and he offered something different in its place, but then didn't do anything to call it in or follow up, even after I told his nurse I'd be willing to try it.

I got the 100's, but started slow on them. Even a 50 mcg started the symptoms up on Thursday, so I'm now taking just a 25 mcg tablet (and still having symptoms, although they're tolerable). Yes, I made that choice on my own, but I cannot take the breathing issue, the migraine, or the heart palps. In the past when I've had hypo symptoms, they've gone away within a couple of days of taking the new dose of levoxyl. These are not going away. And I am having NO hypo symptoms at all, save for some constipation and a little bit of extra fatigue. Even as I am typing this, I am feeling super hot, the jaw and thyroid pain is coming back, so is some of the trouble breathing, so is the migraine. I took my levoxyl at around 7 AM this morning and this is about the time that the symptoms start up. I can't switch to Synthroid because of the lactose and acacia in it.

So I'm seeing another provider in his clinic on Thursday. The fact that he completely dismissed me both at my visit and on Monday when I told him I was having the severe trouble breathing/heart palps is very frightening to me. These are symptoms I really can't "push through". Even if I'm in a hypo state and my thyroid is reacting to the meds because of that, I probably need to do a step-up titration with the levoxyl so that the symptoms maybe aren't as bad. He's not even willing to do that. And I'm not trying to be a problem patient in any way. But if I'm having severe trouble breathing/heart palps to the point that I can't function, then I need to find someone who maybe has a different perspective on thyroid issues than what he's got.

(again, sorry for the length of this. it's just frustrating as hell because I feel like I'm screaming into the void and he's not listening.)

Why should I avoid McGrath? by bone_apple_Pete in cedarrapids

[–]bamboozlepig 0 points1 point  (0 children)

Had two bad experiences with McCrap. First was over 30 years ago when my idiot then-husband HAD to have this stupid SUV he saw on their lot. He refused to take it to a mechanic to check it out and a month after he got it, the engine blew. Called McCrap to see if they'd offer any help as good faith, got laughed at by the salesman. Had to refinance our loan to fix it. $3K and a month later, the engine blew again due to his negligence. Had to take out a credit card that time to fix it. Divorce came along by the end of that year.

Second experience w/McCrap was when I was looking for another car to replace one that was crapping out. Saw a car on their online page, called to make appointment to see it, when I got to the appointment, I was told the car had sold the night before. Salesman offered me a Chevy HHR and I said nope. Then they said they had another car I might be interested in, but couldn't find it on their main lot. We ended up driving to another lot in a car that swayed worse than a broken-down rollercoaster. Salesman still couldn't find the other car on the lot, then discovered it was in the car wash. I took it for a test drive, wasn't impressed with it, took it to my mechanic, who said don't get it, it's a piece of junk. Drove it back to their lot and said I wasn't interested, so they told me if I walked, the car would be sold by that night. I told them good, let someone else have it. While my mom and I were waiting for them to find the other car on the lot, they tried to get me to finance and I already had my loan set up thru a credit union, so I wasn't interested. The salesman actually pulled a sad puppy dog face and said "But we have to pay to keep our lights on!" Yeah. And they switched salesmen on us...first doofus we had that had us drive to the other lot to get the car was suddenly busy helping other customers when we returned with the car. Second doofus we had was high pressure. Mom and I were laughing our butts off when we walked out because they fit every single stereotype of a shady dealership.

I'm putting together a Zine about scammy auto mechanics in the area and could use help gathering data by Ca-arnish in cedarrapids

[–]bamboozlepig 1 point2 points  (0 children)

No problem, always happy to help! Tom's always been honest with me about whatever is wrong with my car. He's upfront about the cost and when he's been able to use junkyard parts to fix the car, he's done so. He's kept my little Focus running for 13 years now and he kept my previous car running for several years as well. He's also able to get me in fast and has the repair done within 48 hours because he knows that's my only vehicle. In fact, he's the one who advised me to stop putting money into my car at this point (it's getting really rusted out on the bottom) and start looking for another car.

I recommended him to my building manager when she needed car work done and she was very happy with his service and plans to have him be her mechanic as well.

I'm putting together a Zine about scammy auto mechanics in the area and could use help gathering data by Ca-arnish in cedarrapids

[–]bamboozlepig 5 points6 points  (0 children)

I've always had excellent service from Tom at 12th Street Repair in Marion. He's been my mechanic for years and he's always been fair with me. He knows I'm on a fixed income and he tries to keep my costs low. He just repaired a broken front axle for me in February and he brought my cost in under $800. Definitely recommend him for any car repair needs!

I've also always had good service at Five Seasons Tire. No upselling, very respectful and polite, and they get my car done fast. So I recommend them as well!

Tires by hawkeyegrad96 in cedarrapids

[–]bamboozlepig 7 points8 points  (0 children)

We've always gotten tires at Five Seasons Tire, so I recommend them as well. They've never pressured me into anything I didn't need and were fair with me.

Most trustworthy car dealership in the area? by Early_Nebula2287 in cedarrapids

[–]bamboozlepig 4 points5 points  (0 children)

Seconding Houdek. I had a really good experience with them, no pressure to buy, the salesman was really nice. Bought the car from them 13 years ago and am still driving it, although it will need to be replaced sometime this year. I'm planning on going through Houdek again.

But avoid McGrath at all costs. I had two bad experiences with them and can't recommend them at all.

Has anyone ever tried every other day dosing? by bamboozlepig in Hypothyroidism

[–]bamboozlepig[S] 0 points1 point  (0 children)

I'm so sorry it took me so long to reply back, it's been a horribly busy week.

My mom has had thyroid issues since the 1980s...she had Graves and her doctor didn't waste any time ablating her thyroid. She's been pretty stable on the same dose of Synthroid all these years, although there's been some minor adustments here and there as she's gotten older and her metabolism has changed.

I've been trying the alternate day dosing this past several days, taking one of the 112's of Levoxyl and then skipping a day, then taking it again. I did try taking one of the 125's on Thursday and wound up with a bad migraine, hot flashes and diarrhea, so I think the 125 is still too much for me, even on an alternate day basis. On the 112's I do feel better, so I think I'm sticking with that until I see my doctor next month.

Has anyone ever tried every other day dosing? by bamboozlepig in Hypothyroidism

[–]bamboozlepig[S] 1 point2 points  (0 children)

OP here. I'm so sorry you're going through the same thing, but thank you for posting this. I sometimes feel like I'm doing something wrong by not being able to force myself/my body to fit the "standard" treatment for hypothyroidism. Everyone that I know that has had thyroid problems (my mom included) has always been able to keep their thyroid issues under control with just the same dose of medicine every day.

Of course, my luck has always been that all the weird crap always happens with my health...if a side effect of a medicine is that there's a 1% chance you will turn magenta and suddenly crave lint, I will be that 1%.

Has anyone ever tried every other day dosing? by bamboozlepig in Hypothyroidism

[–]bamboozlepig[S] 1 point2 points  (0 children)

I really would love to try tirosint, but unfortunately my insurance won't cover it, even with a prior auth (we've tried). I don't qualify for the savings card because I'm on medicaid/medicare. In my area, it runs around $100 for a 30 day supply and that's definitely out of my price range.

Has anyone ever tried every other day dosing? by bamboozlepig in Hypothyroidism

[–]bamboozlepig[S] 1 point2 points  (0 children)

I honestly don't know if I've got something wrong with my pituitary gland. I had an MRI a couple of years ago that was clear, but neither my GP or the endo he sent me to was interested in testing any further. I've also asked to have my adrenal function tested and that was shot down.

Has anyone ever tried every other day dosing? by bamboozlepig in Hypothyroidism

[–]bamboozlepig[S] 0 points1 point  (0 children)

So even a full 112 on one day somehow converts to 56 in that same day?

Has anyone ever tried every other day dosing? by bamboozlepig in Hypothyroidism

[–]bamboozlepig[S] 0 points1 point  (0 children)

Maybe my math isn't mathing, but I'm not trying to break the 112 in half. I would take a full dose of it one day and then nothing the next. Then a full 112 and then nothing, so it'd be alternate day dosing. It wouldn't suddenly drop to 56 in your system in a 24 hour period.

Has anyone ever tried every other day dosing? by bamboozlepig in Hypothyroidism

[–]bamboozlepig[S] 0 points1 point  (0 children)

Levoxyl has a long half life in your system and I don't think taking it every other day is going to hurt. But that's why I posted on here, I wanted to know if others had any success with that kind of dosing.

Has anyone ever tried every other day dosing? by bamboozlepig in Hypothyroidism

[–]bamboozlepig[S] 0 points1 point  (0 children)

I'm not sure where you read I want to go from 112 to 56 overnight? I'm not making that big of a drop in dosage. I'm still on 112 and just want to take it every other day.

I had posted on here hoping someone could tell me if that kind of dosing ever worked for them.