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scared
I recently had started treatment on levothyroxine 25mcg.s eleven weeks ago. My tsh at the time was 94. In two weeks it dropped to 32 and the low ft4 was normal again. Every time they try to raise my dose very minimal such as 12.5 or boosting once a week, I get hyper and have to drop back to 25. This is suppose to be a started dose and is affecting me quickly. I am having waves of depression and panic attacks as well. Does anyone have any idea why such a low dose would be working so quickly. I feel like a freak. Everyone takes these high doses and I am on a baby dose that is working fast. Pituitary is fine. What is going on?
Please post your FREE T3 and FREE T4 results and include reference ranges since they vary lab to lab and have to come from your own lab report.
It's not unusual to have symptoms for a while after a dose increase. How long did you try staying on the increased dose before you dropped back?
Please describe your hyper symptoms.
Considering your TSH was quite high before starting meds, you have probably been hypo for a while (think back to when your symptoms started)???
Not everyone takes high doses, and some of us (myself included) are VERY sensitive to increases.
It's not unusual to have symptoms for a while after a dose increase. How long did you try staying on the increased dose before you dropped back?
Please describe your hyper symptoms.
Considering your TSH was quite high before starting meds, you have probably been hypo for a while (think back to when your symptoms started)???
Not everyone takes high doses, and some of us (myself included) are VERY sensitive to increases.
My free t4 was 0.6 range 0.7 -1.8 the free t3 was2.3 range 1.8-4.6. the free t4 and free t3 improved as well within the first two weeks and kept improving although the tsh did not until I did some boosts for two weeks. I just feel so bad and out of sorts because I get all this input on how that can't be on a small dose. Even my endocrine made me feel wierd. I fired her and have a new one now. He says I have my own box and doesn't really give me answers either. I would like to know if there are other sensitive people out there that do well on a low dose.
"...the free t4 and free t3 improved as well within the first two weeks and kept improving although the tsh did not until I did some boosts for two weeks."
Please explain "boosts". Also, what were your actual FT3 and FT4 results after two weeks?
We all react differently. Some of us definitely meed more meds than others. Do you usually have a general sensitivity to all meds? I do. I can usually take about half an adult dose of anything (and I'm not tiny). If you're generally sensitive, that could partially explain it.
If you've been hypo for a long time, it can take your body a while to get used to the presene of thyroid hormones again. What often happens is that when we're hypo, the adrenals "take over" the work of thyroid hormones. That works for a while intil the adrenals wear out (adrenal fatigue). Adrenal fatigue often manifests as inabilty to tolerate thyroid meds. If adrenals are off, it's just about impossible to regulate thyroid. Adrenals have to be addressed first. Has your doctor tested adrenal function?
Another possibility is a vitamin or mineral deficiency. Vitamin D, iron/ferritin and selenium are all necessary for the proper metabolism of thyroid hormones. Defieicencies in any of those can impact how meds affect us.
Any other meds or supplements that could be interacting with thyroid meds?
Please explain "boosts". Also, what were your actual FT3 and FT4 results after two weeks?
We all react differently. Some of us definitely meed more meds than others. Do you usually have a general sensitivity to all meds? I do. I can usually take about half an adult dose of anything (and I'm not tiny). If you're generally sensitive, that could partially explain it.
If you've been hypo for a long time, it can take your body a while to get used to the presene of thyroid hormones again. What often happens is that when we're hypo, the adrenals "take over" the work of thyroid hormones. That works for a while intil the adrenals wear out (adrenal fatigue). Adrenal fatigue often manifests as inabilty to tolerate thyroid meds. If adrenals are off, it's just about impossible to regulate thyroid. Adrenals have to be addressed first. Has your doctor tested adrenal function?
Another possibility is a vitamin or mineral deficiency. Vitamin D, iron/ferritin and selenium are all necessary for the proper metabolism of thyroid hormones. Defieicencies in any of those can impact how meds affect us.
Any other meds or supplements that could be interacting with thyroid meds?
I am not taking any other meds or supplements. ft4 in the beginning was 0.6 range 0.7-1.8 ft3 was 2.3 range 1.8 to 4.6. at the two week marker the ft4 was 1.0 ft32.7. At the eight week marker the ft4 was 1.2and ft3 was3.0.
At ten weeks the ft4 was 1.3 but the ft3 dropped down to 2.5. This is what I don't understand. Yes I am very very sensitive to meds and like you I only need half the dose that others need. Also, I keep going from feeling hyper to really tiered. I would worry more, but as you see the frequent labs show improvement. I have hashi's I believe. They said autoammune. I go from being really calm to wanting to run a marathon and nervous. It also seems to affect my balance and I get a bit dizzy when I increase. Not spinning dizzy but the eyes are not focusing right and when I look down my perception is off. I had this problem before starting treatment it just seems to either improve or get worse...confusing.
At ten weeks the ft4 was 1.3 but the ft3 dropped down to 2.5. This is what I don't understand. Yes I am very very sensitive to meds and like you I only need half the dose that others need. Also, I keep going from feeling hyper to really tiered. I would worry more, but as you see the frequent labs show improvement. I have hashi's I believe. They said autoammune. I go from being really calm to wanting to run a marathon and nervous. It also seems to affect my balance and I get a bit dizzy when I increase. Not spinning dizzy but the eyes are not focusing right and when I look down my perception is off. I had this problem before starting treatment it just seems to either improve or get worse...confusing.
also goolarra, I see you are from sisters, Oregon. I lived up by Portland for the past two years and just recently moved back to Ohio. I love Oregon. Great people.
The boosts were for two weeks the endo had me increase my 25 to 50 mcg;s once a week then go back to 25 the rest of the week..
I am sorry keep forgetting to add things. They drew a cortisol and the endo says the adrenals are fine, but I am sure I wore them down and that is part of the problem.
Your FT3 seems to be tracking your FT4 up nicely, so yes, it seems you convert well. FT3 can be volatile, depending on demand, so the little drop at the end really isn't all that significant. It can take a while for FT3 to stabilize after FT4 has stabilized, and you're hardly even stabilized on FT4 yet.
Have you had antibody tests to confirm Hashi's? TPOab and TGab should both be tested.
Early stages of Hashi's can be characterized by swings from hypo to hyper. As the antibodies kill off thyroid cells, the dying cells can "dump" hormone into the bloodstream. You might be experiencing some of that, causing a mix of hypo and hyper symptoms.
I do love Oregon, but I wish it were just a little warmer in the winter!
The only really definitve adrenal test is a 24-hour saliva test. You spit into a cup at four specific times of day, and cortisol is measured at each time. Any test that "averages" won't pick up a too low morning level and too high evening level, for example.
What's your TSH now? When your FT3 was 2.5 and your FT4 was 1.3? How was a pituitary issue ruled out?
Have you had antibody tests to confirm Hashi's? TPOab and TGab should both be tested.
Early stages of Hashi's can be characterized by swings from hypo to hyper. As the antibodies kill off thyroid cells, the dying cells can "dump" hormone into the bloodstream. You might be experiencing some of that, causing a mix of hypo and hyper symptoms.
I do love Oregon, but I wish it were just a little warmer in the winter!
The only really definitve adrenal test is a 24-hour saliva test. You spit into a cup at four specific times of day, and cortisol is measured at each time. Any test that "averages" won't pick up a too low morning level and too high evening level, for example.
What's your TSH now? When your FT3 was 2.5 and your FT4 was 1.3? How was a pituitary issue ruled out?
As of two weeks ago the tsh was 16 and my ft4 1.3 ft3 2.5. Since two weeks ago I dropped my dose back down to 25 and just did my increase of 12.5 today. Remember I am only increasing 12.5 twice a week. That brings me to another question. Since I dropped back to 25mcg these past two weeks, will my tsh possible shoot up super high and the free t's go south again, or will it just keep me where I am at?
Do I have this right...prior to two weeks ago, you were taking 25 mcg per day and an extra 12.5 twice a week. For the past two weeks, you've just been taking 25 mcg per day with no extra, correct?
If I have that right, then, no I wouldn't expect your TSH to skyrocket and your FT3 and FT4 to tank. Frees might drop a bit and TSH rise a bit, but I wouldn't expect huge changes.
Once again, I have to ask how a pituitary dysfunction was ruled out.
If I have that right, then, no I wouldn't expect your TSH to skyrocket and your FT3 and FT4 to tank. Frees might drop a bit and TSH rise a bit, but I wouldn't expect huge changes.
Once again, I have to ask how a pituitary dysfunction was ruled out.
They did a blood test forget which one on the pituitary. Both endo's said it was fine. If it weren't would the treatment be the same? Also my ft4 was low so I assume it is not pituitary because that doesn't affect the ft4 correct?
I am so glad I have you.. Thank you.. I understand. Just a little confused on why I just want to sleep all day especially after an increase. Last time I had an increase I felt it that day. By the third day I went to er for heart racing. I know it doesn't catch up to you for several weeks, so why I had that reaction on the third day, I don't know. I just don't want things to go south, since I am on such a low dose.. My first endo scared me half to death. She wanted me on 75 mcg to start and even though my labs were coming back great on 25, she was telling me all sorts of stuff. Now when I feel I can sleep all day instead of enjoying it, I feel like something has gone wrong. My new endo is not going to bring my tsh down either. He says I can function with one as long as it is not over 20 and the frees are stabel. But the free's are kind of stable now? Anyway that is why I am only increasing now 12.5 twice a week and then we draw labs in six weeks. I am so nervous about my tsh because of that first endo I fires.
Oh my, WHAT did that first endo tell you? Fact: TSH (high or low) causes NO symptoms, not one. IF (that's the big, fat IF) TSH is working properly and it reflects FT3 and FT4 levels that are too high or too low, then you will have symptoms, but they are symptoms of your free levels, not your TSH. TSH is the least important of the tests (despite popular opinion), and there is no harm at all in ignoring it.
My PCP, who diagnosed me, started me on 88 mcg of levo. Like you, I had to back off until I was down to 25 mcg. I stabilized for years on 75 mcg, so you can imagine what 88 mcg as a starting dose did to me! It wasn't pretty...
Enjoy a nap...there are going to be bumps in the road for a while. Be kind to yourself in the meantime.
It takes more time than you think. Your frees are, I think, stabilizING. It takes time for your whole body to rebalance. And you're never really stable until your levels stay the same ON THE SAME DOSE over a couple of retests.
What about Hashi's? Have you had antibody tests?
My PCP, who diagnosed me, started me on 88 mcg of levo. Like you, I had to back off until I was down to 25 mcg. I stabilized for years on 75 mcg, so you can imagine what 88 mcg as a starting dose did to me! It wasn't pretty...
Enjoy a nap...there are going to be bumps in the road for a while. Be kind to yourself in the meantime.
It takes more time than you think. Your frees are, I think, stabilizING. It takes time for your whole body to rebalance. And you're never really stable until your levels stay the same ON THE SAME DOSE over a couple of retests.
What about Hashi's? Have you had antibody tests?
I take 88 mcg of levo (T4) now. It took me about a year to increase from 25 to 75, where I stayed for a long time. About a year ago, I needed a little tweak and went to 88 (mostly to keep my endo happy).
I forgot the most important question of all:
Did you have hypo symptoms before starting meds? If so, have they resolved, improved? Do you feel like you're close to being back to 100%?
Did you have hypo symptoms before starting meds? If so, have they resolved, improved? Do you feel like you're close to being back to 100%?
so then I am doing pretty good only being 11 weeks into this? Are you saying it took a year to get your ft's in order? If that is the case I may only have to take 37.5 down the road. What do you think from what I have told you?I know I need to raise my t's a bit, but will it hold then? Why the anxiety attacks and waves of depression through this?I always felt tiered here and there but I have cronic fatigue syndrom from having mono twice. The last two months before I started treatment I started gaining weight and my face puffed up. Quite frankly I feel worse now since starting treatment than I did before. I was hypo for eight years but the free t's were always normal and the tsh never went above 25 until the last few months. Another question, why would all of a sudden my tsh jump to 64 then in one week to 94? That happened in just one week. Then in two weeks on 25 levo, drop to 32?
You are doing well only being 11 weeks into this. Your FT4 is already at a good level. That's an accomplishment in that short a time. Your FT4 is really at a level that is usually considerd just about "ideal"...it may not be high enough for you, but it's the number we all shoot for until we find out where we each feel best. Your FT3 is still a little low, but as I explained before, that might continue to go up with no further change in T4 meds. If FT3 doesn't continue to go up and you still have hypo symptoms, you might consider adding a little T3 to your meds.
It's kind of a long story. Nutshell version: My FT3 and FT4 got back into line fairly quickly, and my symptoms resolved, BUT my TSH was still off. Since my doctor had started me on 88 mcg, I thought that's what I eventually had to be on. So, I increased very slowly over the next year or so. Finally, when I got to 69 mcg (a 44 plus a 25), I said "enough". I felt good; all my doctor was doing was trying to get my numbers (especially my TSH) right. That's when I found a new doctor. He switched me to a brand name from generic, which made my labs go down a little. We compensated for that by going to 75. I was on 75 for years.
You may not need more than 37.5 at this time. If you have Hashi's, it destroys more of your thyroid function all the time, so you have to expect increases until the thryoid is effectively "dead". Using myself as an example once again though, my endo and I both think my thyroid is dead (I do have Hashi's), and I only take 88 mcg...that's a very low TOTAL replacement dose (remember, my thyroid is producing nothing now). We all feel well on differnet doses and with different levels. As I've said, I don't tolerate any meds well.
Symptoms, including depression and anxiety attacks, often get a bit worse when you start meds. Other parts of your body have been compensating for not having thyroid hormones available. A classic example of that is the adrenals take over and try to do the work of the thyroid. Bring thyroid hormones back in again, and your whole body has to rebalance. That juggling act can make you feel pretty lousy for a while.
Has your weight gain stopped? The puffiness gone away? Were you depressed and having anxiety attacks before you went on meds, or are those new symptoms?
TSH is very volatile, and it can vary as much as 70% just depending on the time of day the blood was drawn. So, if your TSH is 10, for example, 70% of 10 is 7, so it could be anywhere from 3 to 17 at another time of day. Your TSH was 64 (70% of 64 is about 45), so yours could have been anywhere from 39 to 109 at another time of day.
I had the same thing happen. I said my PCP originally diagnosed me...not true...my husband did (no medical training whatsoever). I ordered a TSH test online, and it came back around 37, if I remember correctly. As soon as I saw that, I called my doctor and she ordered a thyroid panel that I had done within the next week. My TSH was 60-something by then. This is why TSH is so inadequate to manage meds. You can chase TSH up and down, and you will be on a rollercoaster of hypo to hyper if you don't go by the frees.
It's kind of a long story. Nutshell version: My FT3 and FT4 got back into line fairly quickly, and my symptoms resolved, BUT my TSH was still off. Since my doctor had started me on 88 mcg, I thought that's what I eventually had to be on. So, I increased very slowly over the next year or so. Finally, when I got to 69 mcg (a 44 plus a 25), I said "enough". I felt good; all my doctor was doing was trying to get my numbers (especially my TSH) right. That's when I found a new doctor. He switched me to a brand name from generic, which made my labs go down a little. We compensated for that by going to 75. I was on 75 for years.
You may not need more than 37.5 at this time. If you have Hashi's, it destroys more of your thyroid function all the time, so you have to expect increases until the thryoid is effectively "dead". Using myself as an example once again though, my endo and I both think my thyroid is dead (I do have Hashi's), and I only take 88 mcg...that's a very low TOTAL replacement dose (remember, my thyroid is producing nothing now). We all feel well on differnet doses and with different levels. As I've said, I don't tolerate any meds well.
Symptoms, including depression and anxiety attacks, often get a bit worse when you start meds. Other parts of your body have been compensating for not having thyroid hormones available. A classic example of that is the adrenals take over and try to do the work of the thyroid. Bring thyroid hormones back in again, and your whole body has to rebalance. That juggling act can make you feel pretty lousy for a while.
Has your weight gain stopped? The puffiness gone away? Were you depressed and having anxiety attacks before you went on meds, or are those new symptoms?
TSH is very volatile, and it can vary as much as 70% just depending on the time of day the blood was drawn. So, if your TSH is 10, for example, 70% of 10 is 7, so it could be anywhere from 3 to 17 at another time of day. Your TSH was 64 (70% of 64 is about 45), so yours could have been anywhere from 39 to 109 at another time of day.
I had the same thing happen. I said my PCP originally diagnosed me...not true...my husband did (no medical training whatsoever). I ordered a TSH test online, and it came back around 37, if I remember correctly. As soon as I saw that, I called my doctor and she ordered a thyroid panel that I had done within the next week. My TSH was 60-something by then. This is why TSH is so inadequate to manage meds. You can chase TSH up and down, and you will be on a rollercoaster of hypo to hyper if you don't go by the frees.
Hi, yes my weight gain has stopped. I actually have lost 12lbs due to lack of appetite from anxiety. I did not have depression or anxiety until I started treatment. My puffyness went away really quick. I was wondering if you know why at times my dizzyness gets worse than better. As I stated earlier I had the dizzy's before but when I did some increases, it got worse. I know the med we take today doesn't register until several weeks, but can you tell me why the third day of my increase I had a racing pulse? I feel so wiered out. You said your doc changed your generic to name brand? I am taking levothyroxine. I thought that is what you were taking. I tried synthroid for one day and had a severe head and body rush. Couldn't look down without the floor coming up at me... I think I told you this. well, any ideas on that. Also got diarreah the next day. I only took one pill.. went right back on the generic.....
The med you take today does register right away, BUT it doesn't reach it's full potential in your blood for 4-6 weeks. During that time, your levels are slowly building up, but you won't know how much they'll build for 4-6 weeks. This is an oversimplification, but say you've taken 25 mcg a day for 28 days. That's an average of 25 mcg per day. Today, you take 50 mcg. Now in the past 28 days, you've taken 25 mcg x 27 days (675) and 50 mcg x 1 day (50) for a total of 725, or an average of 25.9 over the past 28 days. So, your level creeps up a little every day. After 28 days, you will have taken 50 for all the previous days, and your level wouldn't be expected to change much more after that (on the same dose). You can start having hyper symptoms the minute your level gets too high for you.
If you are very close to taking too much med, you can go over in a few days.
How fast was your pulse racing? How long did it last? Have you ever had any heart issues before?
I am now taking generic levothyroxine. I used to take Levoxyl (another brand name, like Synthroid), but Levoxyl was recalled last spring, and my doctor switched me back to generic at that time. I don't know if Levoxyl is back in production yet or not; they had said it could be 2014 before it was back.
Usually, an acute reaction, like the one you had to Synthroid, is an allergic reaction. All the tablets from all the different manufacturers contain different fillers (inactive ingredients), and some people are allergic or sensitive to those.
I think the varying degrees of dizziness are also part of your body adjusting to the higher levels of meds.
I wanted to go back to something you said above that your current endo had told you:
"He says I have my own box and doesn't really give me answers either."
I assume what he's telling you is that you have levels at which you will be comfortable that may not conform to the "usual" levels that people feel comfortable at. If that's what he's saying, he sounds like a smart man. Is he encouraging you to increase your meds?
If you are very close to taking too much med, you can go over in a few days.
How fast was your pulse racing? How long did it last? Have you ever had any heart issues before?
I am now taking generic levothyroxine. I used to take Levoxyl (another brand name, like Synthroid), but Levoxyl was recalled last spring, and my doctor switched me back to generic at that time. I don't know if Levoxyl is back in production yet or not; they had said it could be 2014 before it was back.
Usually, an acute reaction, like the one you had to Synthroid, is an allergic reaction. All the tablets from all the different manufacturers contain different fillers (inactive ingredients), and some people are allergic or sensitive to those.
I think the varying degrees of dizziness are also part of your body adjusting to the higher levels of meds.
I wanted to go back to something you said above that your current endo had told you:
"He says I have my own box and doesn't really give me answers either."
I assume what he's telling you is that you have levels at which you will be comfortable that may not conform to the "usual" levels that people feel comfortable at. If that's what he's saying, he sounds like a smart man. Is he encouraging you to increase your meds?
Yes he is encouraging me to increase but he said we are doing this very slowly. I understand what you explained about dosage, but what I don't understand is how it works when you only increase twice a week. I will be adding only another 50mcgs a week but on Sat and Wensday. How does that work..
have another question for you. From what I am gathering as we put hormone in our bodies does that go to healing certain issues like muscle pain, allergies, and other ailments to the body? Is that what you mean by the body is using up the hormone where it is needed?Do you know what I am asking..
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Your pituitary controls your thyroid. It does that by producing TSH, which is nothing but a messenger from your pituitary to your thyroid telling your thyroid that your FT3 and FT4 levels are too low.
Someone might correct me here, but low thyroid hormones are treated the same way regardless of WHY the levels are low. They're treated with replacement hormones.
So, when your TSH is high, it's because your pituitary keeps "calling" your thyroid and asking it for more hormone. If your FT4 is low, it's because your thyroid is diseased or dysfunctional and CAN'T produce enough hormone to keep your pituitary happy.
However, there are a number of things that can go wrong in that process, some of which do not show up in blood work. Sometimes the pituitary misjudges blood thyroid hormone levels and doesn't send out enough TSH. If the thyroid doesn't get TSH, it can't produce hormones. This isn't your problem, I'm just giving you an example. This is characterized by both low TSH AND low FT4.
Another thing that can happen is that your pituitary misjudges FT3 and FT4 levels and thinks there isn't enough, when, in fact, there is. In that case, your TSH will remain high even though your FT3 and FT4 levels are fine (and you are symptom free). This is called pituitary resistance to thyroid hormone (PRTH). I have that, and my TSH stays around 20.0 all the time even though I feel well. My doctors just about killed me trying to get my TSH to go down, which it won't. This is characterized by high TSH AND normal to high FT4.
So, you are early in treatment. It's hard to draw any conclusions at this point. However, I see myself in what you've posted. I struggled through every increase. You have to give it all some time to stabilize. Your FT4 at 1.3 (0.7-1.8) looks vey good right now. FT3 is still a little low, but many of us found that it took FT3 a while to stabilize and that it kept rising even after FT4 was stable for a while. With you FT4 just above midrange, I'd expect your TSH to have gotten closer to "normal" than it is. Once again, though, it's early, and it may just not have "caught yup" yet.