Aa
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?
I am anxious but it is different . It is from the treatment and trying to adjust my hormones I think.
NO other meds... I gave up caffeine a year ago. I actually had an episode a year ago when I became dizzy and it lasted eight months, 24/7. Then It got better and I could function again. But now with the increases it gets worse. Please ask all the questions you want. I need all the support I can get. I am pretty much alone in alll this...Anyway no herbal nothing. I am also postmenopausal and take no hormones for that.
I had dizziness and nausea for the first month on/off when beginning Synthroid after my surgery but that went away. I would feel a wave of feeling dizzy.
Keep in mind, too, that sometimes if we become anxious (due to the med or our TSH) that dizziness can come from that too.
Sorry you had a bad reaction with Synthroid (I missed that above).
I do find that I have to be careful with certain things since taking Synthroid -- things with caffeine are a HUGE trigger and can catch me off-guard. Also, otc meds such as cold medication can react in feeling anxious. I need to truly space my Synthroid out by hours when taking some other meds. My doc is aware.
Are you on any other medications at all otc, herbal, or other? Caffeine intake?
Not prying .. jut trying to help.
C~
Keep in mind, too, that sometimes if we become anxious (due to the med or our TSH) that dizziness can come from that too.
Sorry you had a bad reaction with Synthroid (I missed that above).
I do find that I have to be careful with certain things since taking Synthroid -- things with caffeine are a HUGE trigger and can catch me off-guard. Also, otc meds such as cold medication can react in feeling anxious. I need to truly space my Synthroid out by hours when taking some other meds. My doc is aware.
Are you on any other medications at all otc, herbal, or other? Caffeine intake?
Not prying .. jut trying to help.
C~
endo has not considered changing meds and I am not ready for that especially after the episode last week trying to change to synthroid. One pill and I had a bad reaction. Had a head and body rush that was so wierd, got dizzy and had diahreah cant; spell it but I think you get it.. I feel so wierd but that seems to be passing.. Did you have any dizzy issues when increasing your dose?
Wow so it is ok to take the low dose for ages and take a few years to move up! i am getting used to the levo but then within a few weeks they all want to do an increase. I stopped at tsh 32 without the boosts, but I will let you read all that to get the details...I just don't understand why my body wants to stay at 25mcg.. I was doing good in the beginning but it seems with every increase although so small, I get jittery, tiered at the same time and anxiety and depression I have not had before all this.. I had an ultra sound seven years ago when this started and it was clear. I posted my antibodies a few paragrahs up. normal lab range >10 mine was 71 and that was in 2006. I only started treatment now because my tsh flew up to 94 and ft4 started to drop in the low range. As I been talking to goolaara I just don[t understand why I seem to have more symptoms now and feel overall crappier.. I feel good on the 25 and my ft's are normal now, but the tsh is still 17. I just wish these doc's wouldn't push me so hard.
Hi,
I may have a couple of ideas to offer and forgive me if a few questions may have been asked it's a very long thread.
You may want to start using our Thyroid Tracker to track your symptoms and journal when you have a med change. You can select privacy controls on this.
All trackersa: http://www.medhelp.org/health_tools?type=Trackers
Thyroid Tracker: http://www.medhelp.org/user_trackers/gallery/thyroid
Have the docs run Hashimoto's lab work ?
I by no means am an expert but have been on Synthroid since 2007 and recently experienced a terrible episode of extensive HypERthyroid symptoms after a serious kidney infection (on the same dose 100mcgs that I'm always on)., So I can definitely believe and understand firsthand your feelings and being concerned for your health and well-being w/o side effects.
There are different brands of the same med. Would you doctor maybe let you try name brand? Oftentimes the fillers in some of the generics act differently and refill to refill can be a different mfg company who uses different fillers, etc. Name brand is the same usually.
Has your Endo considered changing to a different medicine like Tyrosint? It's relatively new player in the field, but some have great results when other meds fail.
I started out on 25mcgs, then three mos later 50mcgs, then about 3 yrs later 75mcgs, then another 2 yr later 88mcgs and then a fast jump up to 100mcgs. 112mcgs was too much for me.
I am treated for small incidental findings of thy cancer and partial thyroidectomy.
Also, have they checked your antithyroroglobulins and/or did an ultrasound to be certain all is 100% ok in those departments?
Keep us posted and hang in there .. the first year is the worst. Took me 10mos to regulate my dosing and it keeps changing 8 yrs later along the way (sigh).
C~
I may have a couple of ideas to offer and forgive me if a few questions may have been asked it's a very long thread.
You may want to start using our Thyroid Tracker to track your symptoms and journal when you have a med change. You can select privacy controls on this.
All trackersa: http://www.medhelp.org/health_tools?type=Trackers
Thyroid Tracker: http://www.medhelp.org/user_trackers/gallery/thyroid
Have the docs run Hashimoto's lab work ?
I by no means am an expert but have been on Synthroid since 2007 and recently experienced a terrible episode of extensive HypERthyroid symptoms after a serious kidney infection (on the same dose 100mcgs that I'm always on)., So I can definitely believe and understand firsthand your feelings and being concerned for your health and well-being w/o side effects.
There are different brands of the same med. Would you doctor maybe let you try name brand? Oftentimes the fillers in some of the generics act differently and refill to refill can be a different mfg company who uses different fillers, etc. Name brand is the same usually.
Has your Endo considered changing to a different medicine like Tyrosint? It's relatively new player in the field, but some have great results when other meds fail.
I started out on 25mcgs, then three mos later 50mcgs, then about 3 yrs later 75mcgs, then another 2 yr later 88mcgs and then a fast jump up to 100mcgs. 112mcgs was too much for me.
I am treated for small incidental findings of thy cancer and partial thyroidectomy.
Also, have they checked your antithyroroglobulins and/or did an ultrasound to be certain all is 100% ok in those departments?
Keep us posted and hang in there .. the first year is the worst. Took me 10mos to regulate my dosing and it keeps changing 8 yrs later along the way (sigh).
C~
I was reading through our previous posts and noticed that in the beginning to middle my ft4 increased and ft3 was a little low. I noticed that the last labs show that the ft4 is lower now and the ft3 came up a bit. Is that good?
I don't know what to do... I am toying with doing it like you suggested cutting it into quarters and taking four days a week, Or just doing 12.5 a week... What is your opinion on what would work best? I know the 25 is not enough, so is it gentler on the system to do smaller quarters more frequent and balanced than taking two halfs twice a week?
I was reading over our comments and I saw the one where you said it took a year to get you away from the 25mcg.. How long were you on 25mcgS?
The endo knows about my anxiety and depression since starting meds and he says it is because of the other endo doing increases, especially when I added 12.5 three days in a row.. that is when I developed racing pulse and heart palps and went to er. He said they were pushing me to hard, but now I am doing another increase....although his increase has been much more gentler than the other endo. My good primary says that this is part of the process, and doesn't want to prescribe meds for anxiety just yet. She claims it will pass. As I said it was starting to then I did an increase again...I know you are not suppose to feel it until four weeks, so do know why we react the same day? I guess this extra 25 this week will make up for the dose I missed last week?
antibodies >10 is the range mine was 74. the adrenal test was a cortisol blood test, endo says normal nor adrenal issues. I only have symptoms from the meds. LIke I said last week when I was taking only the 25 and the increases were wearing off, I was starting to feel normal..Everytime I do an increase things change and I feel horrible. I told the doc's but they just blow me off..I was actually hoping when I saw the new endo he would decrease my 25, but I am used to that now....Something is not right. I went to the primary and he just blows me off and says as long as I have an endo he will not discuss thyroid with me....
"My endo said he would be ok with my tsh at 20 and under. It is at 17 now and the t's are ok, so why do I need the increase?"
You still have symptoms. Unless you have a pituitary issue, like I do, a TSH of 17 is certainly not ideal. It's one thing to have a TSH of 17 and be symptom free and quite another to have a TSH of 17 and still feel awful.
Anti-depressants can make it worse, but if that's the case, you don't have to keep taking them. Does your endo know that you've developed anxiety and depression since starting meds? If not, you should ask him for suggestions. If so, what did he have to say about it?
12.5 a week is a very small increase. That's less than 2 mcg per day. Every little bit helps.
Have you had antibody testing? If so, results and ranges, please.
What about adrenal testing? Results and ranges once again, please.
You still have symptoms. Unless you have a pituitary issue, like I do, a TSH of 17 is certainly not ideal. It's one thing to have a TSH of 17 and be symptom free and quite another to have a TSH of 17 and still feel awful.
Anti-depressants can make it worse, but if that's the case, you don't have to keep taking them. Does your endo know that you've developed anxiety and depression since starting meds? If not, you should ask him for suggestions. If so, what did he have to say about it?
12.5 a week is a very small increase. That's less than 2 mcg per day. Every little bit helps.
Have you had antibody testing? If so, results and ranges, please.
What about adrenal testing? Results and ranges once again, please.
what I read and mean by brain fog is that it feels like a cloud over your head like something holding me back. I guess the way people feel that take noritiptiline.. It coats the brain and people have a hard time when they first wake. I guess this has been so hard for me because I have the dizzy's as well. When I first started my meds I felt pretty good, and the symptoms got better. It was when I did my first dose increase that I started getting more disequalibrium and anxiety.. This is what I don't understand. The doc said to discuss it with my primary and the primary I have said I don't think so and disregards it. My good primary says this is normal but I have to pay for her where she is at, no finacial assistance there, so she councils over the phone....I know my foggy feeling and dizzy sensation is fine when I am only at 25. I guess having hashi's doesn't help maybe that is why I feel one way when I increase and different the next?
apparently antidepressants only make it worse I have been told by several people..I think the meds are causing both sensations because it happens about an hour or so after taking them. I was told by the primary until I am stable this will happen but I never know what to expect. I hope I am not draining you too much. You have really helped me alot.. I was starting to feel normal just on 25 after the last increase messed me up, and then increase again.. Now I am all over the place.. so, you think it is ok to cut back to 12.5 instead of the full 25 a week? Will that do something? My endo said he would be ok with my tsh at 20 and under. It is at 17 now and the t's are ok, so why do I need the increase?
Do you mean that you actually have sensations in your head? "Brain fog" is the inability to concentrate and the feeling that everything is a little "fuzzy". It's like you can't quite focus, but it's not a visual disturbance. You don't actually feel anything in your head.
"I just dont understand how I could take the first half saturday and feel sedated and then today feel hyper.....confused."
Well, if you have two very different, almost opposite, reactions to the same thing, I guess you have to ask yourself why you think it's the meds causing both?
1.3 (0.7-1.8) is 55% of range.
My TSH stays around 20.0.
You might want to go see your doctor again. She might be able to give you an antidepressant and/or an anti-anxiety script. Your depression and anxiety is most likely caused by your thyroid problem, but you might need a little help to get you through until you get your thyroid condition under control, and since you have to increase slowly, that might be a while. Just because you take something for a short period of time to help you through a rough situation doesn't mean it has to be forever. I'd sit down with her and see if she can help.
"I just dont understand how I could take the first half saturday and feel sedated and then today feel hyper.....confused."
Well, if you have two very different, almost opposite, reactions to the same thing, I guess you have to ask yourself why you think it's the meds causing both?
1.3 (0.7-1.8) is 55% of range.
My TSH stays around 20.0.
You might want to go see your doctor again. She might be able to give you an antidepressant and/or an anti-anxiety script. Your depression and anxiety is most likely caused by your thyroid problem, but you might need a little help to get you through until you get your thyroid condition under control, and since you have to increase slowly, that might be a while. Just because you take something for a short period of time to help you through a rough situation doesn't mean it has to be forever. I'd sit down with her and see if she can help.
So sorry goolarra... I keep thinking of things after I post stuff. anyway, I wanted to ask what is tsh stay at?
Also, when you guys talk about brain fog are you referring to the wierd feeling over the head that I am asking about? Does everyone experience this in the beginning for several months. Mine seems to be getting a bit better as time goes on. If that is the case, I am NORMAL...wooottttt and not alone in this experience...
Can you do the math for me on my other labs. This is a different lab. ft4 was 1.3 lab range at this lab is0.7-1.8. Thanks
I just dont understand how I could take the first half saturday and feel sedated and then today feel hyper.....confused.
I have been taking the halfs.. I am so depressed that I can't increase like other people. The probablem is that the levo makes me feel so wierd and spaced out like I am not in reality.. Did you experience this?The whole time in the beginning I felt that way and I can feel it working on my frontal lobe. It was like it is coating my brain and holding me back.. Anyone else have these sensations that you know of?
You could just do 12.5 for now (are you quartering them and taking only half the 12.5 at once?). In a couple of weeks, up that a little.
No, your FT3 went up a little, not significantly, but your FT4 went down from 55% of range to 43% of range, and 43% is often a little low.
Playing with your dose probably won't mess you up, but it will mess up your labs. You just can't get an accurate lab reading unless you are on the same dose for four weeks, minimum.
No, your FT3 went up a little, not significantly, but your FT4 went down from 55% of range to 43% of range, and 43% is often a little low.
Playing with your dose probably won't mess you up, but it will mess up your labs. You just can't get an accurate lab reading unless you are on the same dose for four weeks, minimum.
I was actually feeling good this morning then added that second dose. I feel wierd now. Why does it affect us so quickly in a day? I really don't think I need that much not at this point in time. From what you tell me my numbers are good other than the tsh. That is why I did a blood draw two weeks after I reduced my dose back down.. didn't you say my ft4 actually got a bit better from the last results? Is all this altering dosing around these past four weeks going to mess me up to much?
Maybe you got a bit hyper form the dose increase and maybe you got a little anxious and stressed, too.
This disease takes time and patience. Often symptoms you had before meds (dizziness and tiredness) will get a little worse and new symptoms will appear (depression and anxiety). The longer you were hypo (you probably were for quite a while considering your TSH), the longer it can take to feel well again. It's all part of your body getting used to thyroid hormones again.
I have a congenital heart defect that's caused me to have tachycardia (fast heart rate, also called SVT) all my life. My HR gets to 200+...very uncomfortable and scary at first. Before thyroid meds, I'd had episodes of SVT 3-4 times a year, and I have a little exercise I do that slows my HR and gets it back to normal. My doctor put me on 88 mcg to start (way too much), and I started having SVT 20-30 times a day, and sometimes my exercise wouldn't work on it. I had to back off way down to 25 mcg. The really interesting thing, though, is that once I got on a stable dose and my FT3 and FT4 stabilized, my SVT went AWAY (knock on wood). It didn't just improve; it didn't just go back to what it had been before meds; it went away. I haven't had SVT for 3 and 1/2 years now. Until everything stabilized, though, my SVT was much worse. So, my SVT isn't even related to my thyroid issues because I had it way before thyroid problems started, but the meds made it worse for a while, and then made it better.
This disease takes time and patience. Often symptoms you had before meds (dizziness and tiredness) will get a little worse and new symptoms will appear (depression and anxiety). The longer you were hypo (you probably were for quite a while considering your TSH), the longer it can take to feel well again. It's all part of your body getting used to thyroid hormones again.
I have a congenital heart defect that's caused me to have tachycardia (fast heart rate, also called SVT) all my life. My HR gets to 200+...very uncomfortable and scary at first. Before thyroid meds, I'd had episodes of SVT 3-4 times a year, and I have a little exercise I do that slows my HR and gets it back to normal. My doctor put me on 88 mcg to start (way too much), and I started having SVT 20-30 times a day, and sometimes my exercise wouldn't work on it. I had to back off way down to 25 mcg. The really interesting thing, though, is that once I got on a stable dose and my FT3 and FT4 stabilized, my SVT went AWAY (knock on wood). It didn't just improve; it didn't just go back to what it had been before meds; it went away. I haven't had SVT for 3 and 1/2 years now. Until everything stabilized, though, my SVT was much worse. So, my SVT isn't even related to my thyroid issues because I had it way before thyroid problems started, but the meds made it worse for a while, and then made it better.
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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.