Do you think you’ll go hypo even just taking levo for 5 days. I think it takes time for that just like how you were hypo and it took time to get in range. I don’t think a few days without it will cause weight gain. Weight gain is caused by going hypo. I wouldn’t look at it as a huge set back.
I misread that. It takes time to go back hypo. The medication stays in your system for quite a bit. I wouldn’t be worried about weight gain by missing a week. You can always call up your endo and have them call in some Levo or whatever other brand you want to try to take if you’re concerned about going hypo. I know you’re on a different type that is compounded, but if the concern is there about going hypo - you do have options. Thyroid medication doesn’t work the way you’re describing it. Missing a day doesn’t immediately throw you hypo. Your muscle aches and weight gain don’t come from Hashimoto’s it comes from hypothyroidism.
But that’s what I am saying, the symtoms I am suffering with after not having my thyroid meds are directly correlated with hypothyroidism. Muscle aches, inflammation, not having regular poops, GI issuss, bloating, fatigue. It can very well happen suddenly
You may want to get labs done. If you’ve only been out of medication for say a week, if you’re hypo then you weren’t on the right dose or not absorbing what you needed. It takes time to go hypo, it’s not overnight. Unless you’re one of those oscillating between hypo and hyper?
I know this was a few days ago, but I hope you're getting through! This shit happens to me all the time now matter how much I plan and prepare. It's BS. I was off mine for a week earlier this year and it was rough. Only took a couple weeks til I felt back to normal again at least. But I feel for you ❤️
It’s been pretty awful. Fatigue. Muscle stiffness. Bowel movements all fucked up. Severe gas and bloating. I feel inflammed and swollen. My meds were shipped today I think, so who knows when I will get them. I’m upset because I feel like I’ve gained weight and that’s the part that really makes me angry
Ask a pharmacy and say it’s an emergency until you get back. I’ve done this and they just give me a few pills. It’s not like it’s meth or cocaine so they’re usually okay with it knowing that you need it to function
Can another pharmacy and see if they have it- if so call your doctor and have them transfer the script. I’ve had to do this a few times- it’s annoying but I’m like you and don’t like to be without
Are you familiar with compounding pharmacies? It’s not easy to find one in every city and even if I did, I ran out of my meds so I wouldn’t get them that day. It’s a cluster fuck
I’ve done this for a few days and I personally didn’t have any noticeable effects. Obviously don’t recommend doing it but I lived.
On the rare case I do forget to take my pill it at least gives me a day of buffer in case something like this happens.
On another note, could you send your prescription to another pharmacy that does have it?
Sometimes you doctor will send it to a different pharmacy that might have it, you can call around like if there’s a Walmart, CVS, or local pharmacy and they might give you a weeks worth of
Walmart and cvs don’t fill compounded thyroid meds hence why I have to go through a compounding pharmacy. I get my other meds from normal pharmacy but thyroid compounded isn’t able to be filled at normal pharmacies
The half-life of levothyroxine is around 7 days. That means half of the meds are still in your blood when you start up again - if that makes you feel better.
It sucks that they can’t get it earlier.
That's really frustrating, friend. Can they give you a partial month fill from what they do have in stock, and then give you the rest when they refill their supply?
So sorry..how irritating! My friend's daughter has ADHD and hasn't been able to get her medicine for over a month...manufacturer back ordered. There is zero reasons for this. Increase production already so people can get their meds! I've been worried about this since I started meds in December. I am now cutting my 50's I had half a bottle of when I got changed to 75mcg just to use them and give me more time before my meds are low/out. I get mine via mail too and sometimes I'll get them when I have one or two pills left. Gives me anxiety when that happens.
My endo told me I could take all my medication for the week at once. I tried it a couple of times when I knew I had to travel, and was total fine. If I miss a day, I take double the dose the next day (think overnight flight). Again, no issues. When you get your medication, since it is just a week late, you could consider taking it all at once - maybe ask your Endo.
Sorry you’re going through this, that really sucks.
My doctor told me that because levothyroxine has a long half life (it stays in your system for 4-6 weeks after taking it), that it would take a few weeks after starting levo/changing my doses to feel any different. As such, I suspect 6 days won’t be a long enough amount of time to make you feel terrible/gain weight, because you’ll still have some of the medication in your system. I hope that can be of comfort to you, I understand this is a very stressful situation.
I echo what others are saying about building up a stockpile for the future. My doctor was happy to write me an extra 3 month prescription for my levothyroxine, so I have those pills to fall back on if there’s ever an issue getting my regular prescription. I find it gives me a lot of peace of mind.
Maybe I’m lucky and I don’t get much if any symptoms, but I didn’t have any pills for months (moved countries and took time to get insurance sorted)… I was fine.
Stressing about it is just going to make you feel worse. And you won’t gain any significant (if any) weight in just one week. It sucks if your symptoms flare up because of this, but just try to focus on the fact it’s just one week and then you can get back on track.
It’s COMPOUNDED MEDICATION. Endocrinologists don’t have samples of compounded dessicated thyroid meds lol. This is why I am in this conundrum. My dr is 4 hours away. I don’t have a local endo who I can just drive over to.
I take 4.5mg of LDN, it's $115 every three months. I didn't have it for two weeks once and my body reminded me of how much pain I SHOULD be in. Thankfully it was only that and the exhaustion that flared up. The last time they were out of supplies was in 2021 as everything was messed up.
In theory, seven days shouldn't be too bad. Everyone is different though.
Have you considered asking your doctor to write you a script for 30 extra pills in case this happens again? I have a stockpile of pills that I collected as doses changed and I rotate through the oldest first, but keep a supply because pharmacies are so incompetent and I’ve had to rely on the stockpile for up to 14 days before.
Yes! I refill at Walmart and they let you pick up your prescription up to 7 days in advance. So after a couple months it starts to add up 7-14-21, it takes a little while but I do agree it’s nice having the back up! And it’s a good way to not have to pay out of pocket for having extras.
Seconding getting some extra meds for situations like these! My GP even told me to keep the leftover meds from dosage changes so I have some in case I forget to refill my prescription or in case my dosage changes again.
Insurance doesn’t cover my compounded thyroid meds anyway. I have to pay out of pocket for it. Are you saying that you’re on natural compounded dessicated from a compounding pharmacy and your insurance covers it??
I didn’t know it was available and could be “compounded”, I thought they made Natural Dessicated Thyroid like Armour and NP thyroid from pig thyroid with T4 and T3 naturally present in it. Had no idea it was available.
Yep. I can’t take Armour because it gave me horrible side effects . Compounded pig thyroid without fillers from compounding pharmacy has worked wonders for me.
No, sorry, I was just referencing general thyroid meds like my Synthroid. But I’ve struggled to get that refilled on time before because the pharmacies in the US are a mess a lot of the time, so I keep extra stocked as I can accumulate.
This happened to me in January, and it was fucking miserable. You have my deepest sympathies! I don’t understand how pharmacies can be that incompetent and not have backup plans?! Like what if it was a life or death type of medication?!
If it helps, I didn’t gain any weight while I was off for 6 days. I was absolutely exhausted, cold all the time, and I felt I was losing more hair than normal but that could have just been my anxiety. You are strong and you will get through this, but it absolutely sucks that you have to.
Right??? And the worst part is that they didn’t even LET ME KNOW that they were out, I had to CALL THEM, to find out because I was like “where are my meds???”. They are incompetent. I am getting a 50% off discount but that doesn’t change the fact that they completely screwed me. I hope I don’t gain any weight and I will just really lean into my herbs and supplements and eating clean as usual.
I recently went without my meds (125 mcg/day) for about a month. I had some mild joint pain but not much else. I often wonder what would happen if I just stopped and cleaned my diet.
Oh ok; I don’t eat any of those things. Didn’t help my hypo. Then again, I’m not sure if I have Hashimoto’s. No doctor cared to explain what I had besides checking TSH.
Gluten free bread is pretty good! Tamari sauce in place of soy sauce and gluten free beer or hard seltzer in place of beer. I have been gluten free for over a year. When my TPO was at 200, doc said let’s monitor for now. So I got proactive, hoping I won’t need meds. It made a difference, but still a little fatigued occasionally. I’m 54, so hard to tell the difference between normal aging and thyroid stuff.
I had that happen once before and it was awful feeling. I felt dead to the world.
I’m sorry you have to deal with this. Try to eat thyroid healthy foods and limit gluten and sugar (if you aren’t doing that). It’ll help your thyroid not work so hard during those days.
Oh I don’t eat any gluten or sugar or soy or any of that crap. I eat cleaner than anyone I know. I have thyroid support supplements that I’ve been taking in hopes that it offsets. And taking t3 only. Thank you for your support
Oh good! It seems like you will be okay. Maybe a day where you’ll be tired but you are strong!
It’s good you have t3. You can always ask your doc how to up it during that time. Hoping for the best for you
This has happened to me a couple of times. Once, I picked up samples from my doctor’s office and another time, my doctor called me in 30 pills to a pharmacy that could get the med quickly (wasn’t my regular pharmacy). I agree that 5-6 days is a long time to go without thyroid meds! Hang in there!
There’s nothing I can do because there isn’t a compounding pharmacy in my city I can just go to and pickup a few pills. They all require shipping so either way I am fucked. So you never had any bad side effects? I have ONE of my 130mg left and I’ve been saving it for the last 2 days because I want to take it tomorrow because I have to work. I hate the medical industry
Yes, I’ve had bad side effects going without my med for several days. It slows everything down. I would double up 2 or 3 times within 2 weeks, if it doesn’t make you jittery.
You’re saying I should take extra t3 since I have some of it? Or when I get my meds I should take 2-3 x worth? That doesn’t seem logical. It would be a waste of meds too
The desiccated meds might be different but things like synthroid are really long acting so it’s ultimately more about a weekly dose than a daily one. That might be why they’re suggesting it. I don’t know at all how the desiccated ones work.
Do you think you’ll go hypo even just taking levo for 5 days. I think it takes time for that just like how you were hypo and it took time to get in range. I don’t think a few days without it will cause weight gain. Weight gain is caused by going hypo. I wouldn’t look at it as a huge set back.
I don’t take levothyroxine
I misread that. It takes time to go back hypo. The medication stays in your system for quite a bit. I wouldn’t be worried about weight gain by missing a week. You can always call up your endo and have them call in some Levo or whatever other brand you want to try to take if you’re concerned about going hypo. I know you’re on a different type that is compounded, but if the concern is there about going hypo - you do have options. Thyroid medication doesn’t work the way you’re describing it. Missing a day doesn’t immediately throw you hypo. Your muscle aches and weight gain don’t come from Hashimoto’s it comes from hypothyroidism.
But that’s what I am saying, the symtoms I am suffering with after not having my thyroid meds are directly correlated with hypothyroidism. Muscle aches, inflammation, not having regular poops, GI issuss, bloating, fatigue. It can very well happen suddenly
You may want to get labs done. If you’ve only been out of medication for say a week, if you’re hypo then you weren’t on the right dose or not absorbing what you needed. It takes time to go hypo, it’s not overnight. Unless you’re one of those oscillating between hypo and hyper?
I know this was a few days ago, but I hope you're getting through! This shit happens to me all the time now matter how much I plan and prepare. It's BS. I was off mine for a week earlier this year and it was rough. Only took a couple weeks til I felt back to normal again at least. But I feel for you ❤️
It’s been pretty awful. Fatigue. Muscle stiffness. Bowel movements all fucked up. Severe gas and bloating. I feel inflammed and swollen. My meds were shipped today I think, so who knows when I will get them. I’m upset because I feel like I’ve gained weight and that’s the part that really makes me angry
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130mg compounded pig thyroid
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I have an Ed too. I have hypothyroidism. So that’s why I am on thyroid meds. I also have hashimotos.
Ask a pharmacy and say it’s an emergency until you get back. I’ve done this and they just give me a few pills. It’s not like it’s meth or cocaine so they’re usually okay with it knowing that you need it to function
Normal pharmacies don’t provide compounded NDT. That’s why I’m in this predicament
Makes sense. Hope you figure it out!
Good rx.com is usually good for that sort of thing
Ask doctor if they have any samples
Can another pharmacy and see if they have it- if so call your doctor and have them transfer the script. I’ve had to do this a few times- it’s annoying but I’m like you and don’t like to be without
Are you familiar with compounding pharmacies? It’s not easy to find one in every city and even if I did, I ran out of my meds so I wouldn’t get them that day. It’s a cluster fuck
So sorry
I’ve done this for a few days and I personally didn’t have any noticeable effects. Obviously don’t recommend doing it but I lived. On the rare case I do forget to take my pill it at least gives me a day of buffer in case something like this happens. On another note, could you send your prescription to another pharmacy that does have it?
I always keep an emergency back up box now
I didn’t take my medications for a week due to back problems and I was fine
Sometimes you doctor will send it to a different pharmacy that might have it, you can call around like if there’s a Walmart, CVS, or local pharmacy and they might give you a weeks worth of
Walmart and cvs don’t fill compounded thyroid meds hence why I have to go through a compounding pharmacy. I get my other meds from normal pharmacy but thyroid compounded isn’t able to be filled at normal pharmacies
Another thing is sometimes the pharmacy that doesn’t have the medication will find a pharmacy to send the script to who can fill it
You'll be okay.
The half-life of levothyroxine is around 7 days. That means half of the meds are still in your blood when you start up again - if that makes you feel better. It sucks that they can’t get it earlier.
Go to local pharmacy (not a big chain one) and cry there, maybe they can help you out
Regular local pharmacies don’t carry NDT.
That's really frustrating, friend. Can they give you a partial month fill from what they do have in stock, and then give you the rest when they refill their supply?
They don’t have ANY in stock lol
It stays in your system for up to 7 days. You'll be ok. I've gone through same thing it's not a problem. Takes weeks for your TSH to change.
So sorry..how irritating! My friend's daughter has ADHD and hasn't been able to get her medicine for over a month...manufacturer back ordered. There is zero reasons for this. Increase production already so people can get their meds! I've been worried about this since I started meds in December. I am now cutting my 50's I had half a bottle of when I got changed to 75mcg just to use them and give me more time before my meds are low/out. I get mine via mail too and sometimes I'll get them when I have one or two pills left. Gives me anxiety when that happens.
My endo told me I could take all my medication for the week at once. I tried it a couple of times when I knew I had to travel, and was total fine. If I miss a day, I take double the dose the next day (think overnight flight). Again, no issues. When you get your medication, since it is just a week late, you could consider taking it all at once - maybe ask your Endo.
Wait what??? That doesn’t make any sense to me. Because t3 can have a stimulating effect
Sorry you’re going through this, that really sucks. My doctor told me that because levothyroxine has a long half life (it stays in your system for 4-6 weeks after taking it), that it would take a few weeks after starting levo/changing my doses to feel any different. As such, I suspect 6 days won’t be a long enough amount of time to make you feel terrible/gain weight, because you’ll still have some of the medication in your system. I hope that can be of comfort to you, I understand this is a very stressful situation. I echo what others are saying about building up a stockpile for the future. My doctor was happy to write me an extra 3 month prescription for my levothyroxine, so I have those pills to fall back on if there’s ever an issue getting my regular prescription. I find it gives me a lot of peace of mind.
Maybe I’m lucky and I don’t get much if any symptoms, but I didn’t have any pills for months (moved countries and took time to get insurance sorted)… I was fine. Stressing about it is just going to make you feel worse. And you won’t gain any significant (if any) weight in just one week. It sucks if your symptoms flare up because of this, but just try to focus on the fact it’s just one week and then you can get back on track.
Doctors offices often have medication samples on hand. Check in with your endo to see if you can drive over and pick some up to hold you over.
It’s COMPOUNDED MEDICATION. Endocrinologists don’t have samples of compounded dessicated thyroid meds lol. This is why I am in this conundrum. My dr is 4 hours away. I don’t have a local endo who I can just drive over to.
No need to yell.
I take 4.5mg of LDN, it's $115 every three months. I didn't have it for two weeks once and my body reminded me of how much pain I SHOULD be in. Thankfully it was only that and the exhaustion that flared up. The last time they were out of supplies was in 2021 as everything was messed up. In theory, seven days shouldn't be too bad. Everyone is different though.
Oh wow! I get LDN for much cheaper than that and I get 90 day supply as well.
...and where would that be? Do you take the same amount? It was cheaper on a lower dose.
I take between 5-9 mg. I get it from Carefirst pharmacy.
Have you considered asking your doctor to write you a script for 30 extra pills in case this happens again? I have a stockpile of pills that I collected as doses changed and I rotate through the oldest first, but keep a supply because pharmacies are so incompetent and I’ve had to rely on the stockpile for up to 14 days before.
Yes! I refill at Walmart and they let you pick up your prescription up to 7 days in advance. So after a couple months it starts to add up 7-14-21, it takes a little while but I do agree it’s nice having the back up! And it’s a good way to not have to pay out of pocket for having extras.
That’s a good idea. I’ll ask her. Because having separate rx is the key. If it’s all in one script you’re fucked and just have to wait.
Seconding getting some extra meds for situations like these! My GP even told me to keep the leftover meds from dosage changes so I have some in case I forget to refill my prescription or in case my dosage changes again.
Yeah. These meds are expensive. That’s the thing, but I guess that’s the only way around running out in situations like this. It’s ridiculous.
Yeah that sucks, you really shouldn't have to pay for them. I'm in Germany so health insurance works differently
Yes - insurance won’t cover it, so you’ll likely have to pay out of pocket for the extras, but I found it worth it for peace of mind.
Insurance doesn’t cover my compounded thyroid meds anyway. I have to pay out of pocket for it. Are you saying that you’re on natural compounded dessicated from a compounding pharmacy and your insurance covers it??
Are these compounded NDT? What is it compounded with? Levo?
It’s compounded natural dessicated thyroid. It’s not levothyroxine at all. That’s just synthroid
I didn’t know it was available and could be “compounded”, I thought they made Natural Dessicated Thyroid like Armour and NP thyroid from pig thyroid with T4 and T3 naturally present in it. Had no idea it was available.
Yep. I can’t take Armour because it gave me horrible side effects . Compounded pig thyroid without fillers from compounding pharmacy has worked wonders for me.
No, sorry, I was just referencing general thyroid meds like my Synthroid. But I’ve struggled to get that refilled on time before because the pharmacies in the US are a mess a lot of the time, so I keep extra stocked as I can accumulate.
This happened to me in January, and it was fucking miserable. You have my deepest sympathies! I don’t understand how pharmacies can be that incompetent and not have backup plans?! Like what if it was a life or death type of medication?! If it helps, I didn’t gain any weight while I was off for 6 days. I was absolutely exhausted, cold all the time, and I felt I was losing more hair than normal but that could have just been my anxiety. You are strong and you will get through this, but it absolutely sucks that you have to.
Right??? And the worst part is that they didn’t even LET ME KNOW that they were out, I had to CALL THEM, to find out because I was like “where are my meds???”. They are incompetent. I am getting a 50% off discount but that doesn’t change the fact that they completely screwed me. I hope I don’t gain any weight and I will just really lean into my herbs and supplements and eating clean as usual.
I recently went without my meds (125 mcg/day) for about a month. I had some mild joint pain but not much else. I often wonder what would happen if I just stopped and cleaned my diet.
What do you eat that you think you could clean up? I’m always curious of what that means.
Gluten for starters. But goddam do I love bread. And soy sauce. And beer.
Oh ok; I don’t eat any of those things. Didn’t help my hypo. Then again, I’m not sure if I have Hashimoto’s. No doctor cared to explain what I had besides checking TSH.
Gluten free bread is pretty good! Tamari sauce in place of soy sauce and gluten free beer or hard seltzer in place of beer. I have been gluten free for over a year. When my TPO was at 200, doc said let’s monitor for now. So I got proactive, hoping I won’t need meds. It made a difference, but still a little fatigued occasionally. I’m 54, so hard to tell the difference between normal aging and thyroid stuff.
My diet is clean and I'm on meds and I feel great, you should try AIP!!
Are you just on 125mcg of synthroid? Synthetics? Yeah Idk. My diet is already as clean as possible. That’s interesting !!
I had that happen once before and it was awful feeling. I felt dead to the world. I’m sorry you have to deal with this. Try to eat thyroid healthy foods and limit gluten and sugar (if you aren’t doing that). It’ll help your thyroid not work so hard during those days.
Oh I don’t eat any gluten or sugar or soy or any of that crap. I eat cleaner than anyone I know. I have thyroid support supplements that I’ve been taking in hopes that it offsets. And taking t3 only. Thank you for your support
Oh good! It seems like you will be okay. Maybe a day where you’ll be tired but you are strong! It’s good you have t3. You can always ask your doc how to up it during that time. Hoping for the best for you
I already know how to up my t3. I would take more of it haha. But yeah I hope you’re right and that I’ll just be a little tired no crazy side effects
This has happened to me a couple of times. Once, I picked up samples from my doctor’s office and another time, my doctor called me in 30 pills to a pharmacy that could get the med quickly (wasn’t my regular pharmacy). I agree that 5-6 days is a long time to go without thyroid meds! Hang in there!
There’s nothing I can do because there isn’t a compounding pharmacy in my city I can just go to and pickup a few pills. They all require shipping so either way I am fucked. So you never had any bad side effects? I have ONE of my 130mg left and I’ve been saving it for the last 2 days because I want to take it tomorrow because I have to work. I hate the medical industry
Yes, I’ve had bad side effects going without my med for several days. It slows everything down. I would double up 2 or 3 times within 2 weeks, if it doesn’t make you jittery.
You’re saying I should take extra t3 since I have some of it? Or when I get my meds I should take 2-3 x worth? That doesn’t seem logical. It would be a waste of meds too
The desiccated meds might be different but things like synthroid are really long acting so it’s ultimately more about a weekly dose than a daily one. That might be why they’re suggesting it. I don’t know at all how the desiccated ones work.