Aa
Dosage
I would like to know if anyone has done well on a low dose of thyroxine, such as 25 or 50 mcg's.
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seen the allergist. She does not think allergies are from levo but if they are it is not life threatening. She will test me in two weeks for allergy to levo but says that if I test negative I still may have some allergy to it.. this test is not validated yet. They inject some liquid levo under your skin... this is how they test. Anyway that is it for now. She will also be testing for other allergines as well in two weeks...
so far my free t's are good. Mid to upper for the ft4. the free t3 was climbing then fell a bit, it is at mid range..It is just the tsh. It doesn't want to budge from the teens for some reason. Do you know why that is? I think it may catch up like yours did not doing any increase. I just don't think I need to up my meds right now..It is just a feeling and the way I feel. We will see. I am sure I will eventually but I am ok when I am at 25. It is so funny that although I am not biologically hyper as soon as I add more to the mix, I feel terrible.
I'm so glad you contacted him. I don't know what your FT3 and FT4's are, but I think you said low. I got allergies also with hypo, especially sinus. Hope you have another blood draw soon to see how you're trending, so you can increase as fast as you can, but also as fast as you need to. Being hypo for long can affect other parts of your body, so all the best for getting some balance asap. I did think it may have been low adrenals affecting my tolerance to taking the meds, but gave up asking my doctor for things, and figured if I could get the balance fast enough the adrenals may kick in too. This journey can certainly be challenging, and yes, I do wish you luck, but know you will get there. Thanks for the update!
Kristina , good news. Told my doc about just staying at the 25 a day, and although he cant seem to understand how a small amount can make me sick, he agreed, so I have his blessing.. He keeps telling me he wants to work with me.... I told him I did not have anxiety and all these wierd symptoms until starting levo.. I know I definietly cannot take synthroid. I am seeing an allergist tomorrow and I hope to God they can put some light on this. I found a few ingredients that may be making me sick. I really do not want to try another drug. I gues levoyxl and levothroid are free from aciaca and lactose...wish me luck
I absolutely agree with you. That is why I am holding at 25 for the next four weeks. I have been trying to adjust four different times in one month and I think my body needs to balance. That is all I am saying. I do know we need labs as well, but I guess if someone feels great with a tsh of 10 and it stays there, why force them to get to a certain level according to what is expected, if that makes them feel worse...Did you ever figure out why you me and some of us have such difficulty increasing even the smallest dose? You wouldn't think that would make a difference..I do not have my doctors blessing with this. He insisted I still try another increase of 12.5 a week. I cannot do that now. AT least my dizzyness has stopped somewhat now.. Do you think it is ok to let my body balance then take it from there? Are you the one that had to stay on 25 for several months and your doctor told you to hold, then your levels kept increasing in a good way without a dose change? How long did that last? I also noticed this med is affecting my allergies. At first they improved now they got really bad, and now they are getting better again Does our meds heal certain areas of the body like that?
The trouble with going by 'how we feel' is that for the full effects of the meds we're putting in our mouths today, it takes 4-6 weeks to peak to full concentration i.e. useable FT3. Although, how we feel can start to improve from today's dosage, even within two-three weeks.
However, at the same time, our thyroids are also decreasing the amount of hormone in that 4-6 week period, so there's a bit of guestimating, and, until you're on a stable dose, you will either end up slightly hypo or slightly hyper.
Most here advise (and my doctor and my chemist) not to 'self-medicate' because you can end up all over the place so that even the doctors won't know what to advise to put you on, and we do need advice, as well as needing a doctor to listen to us. A combination of the accumulating medication, and the decreasing hormone that your thyroid is producing can make it difficult.
Your FT4 and FT3 should be in the upper end of 'normal'. As they rise, your TSH will correspondingly fall. It's great that what you've taken has already had some effect, but I would expect that you're not feeling too good yet, given that your thyroid may still be decreasing the amount of hormone it's making while you're trying to supplement with meds. To do it totally on how you feel without a regular consistent pattern of medication and subsequent bloodtests would be extremely mentally challenging.... I really suggest, that, when you have a plan (and you seem to have one), go to your doctor and get his blessing.
At one stage I had a blood test after 3 weeks, just to see which way I was trending. My doctor preferred me to wait until 4 weeks at least, but I lost confidence in our plan so did it early.
Our labs sometimes move towards looking good (as yours have) but they're still not ideal, and hypo symptoms seems to pop up all over the place. I don't have many hypo symptoms any more as I've been taking regular meds for ages, so there is a good accummulation in my system - I just need to check every 3 months and sometimes make a slight adjustment - if I'm a little hypo now, I just get more tired, and my body feels a little heavy.
If you're like me, what my body needed, wasn't the same as what it could handle ingesting, so I had to rise as fast as possible in small increments. There aren't many of us who are super-senstive like that, although the common trend in this forum is to start slow, rather than taking a high dose.
However, at the same time, our thyroids are also decreasing the amount of hormone in that 4-6 week period, so there's a bit of guestimating, and, until you're on a stable dose, you will either end up slightly hypo or slightly hyper.
Most here advise (and my doctor and my chemist) not to 'self-medicate' because you can end up all over the place so that even the doctors won't know what to advise to put you on, and we do need advice, as well as needing a doctor to listen to us. A combination of the accumulating medication, and the decreasing hormone that your thyroid is producing can make it difficult.
Your FT4 and FT3 should be in the upper end of 'normal'. As they rise, your TSH will correspondingly fall. It's great that what you've taken has already had some effect, but I would expect that you're not feeling too good yet, given that your thyroid may still be decreasing the amount of hormone it's making while you're trying to supplement with meds. To do it totally on how you feel without a regular consistent pattern of medication and subsequent bloodtests would be extremely mentally challenging.... I really suggest, that, when you have a plan (and you seem to have one), go to your doctor and get his blessing.
At one stage I had a blood test after 3 weeks, just to see which way I was trending. My doctor preferred me to wait until 4 weeks at least, but I lost confidence in our plan so did it early.
Our labs sometimes move towards looking good (as yours have) but they're still not ideal, and hypo symptoms seems to pop up all over the place. I don't have many hypo symptoms any more as I've been taking regular meds for ages, so there is a good accummulation in my system - I just need to check every 3 months and sometimes make a slight adjustment - if I'm a little hypo now, I just get more tired, and my body feels a little heavy.
If you're like me, what my body needed, wasn't the same as what it could handle ingesting, so I had to rise as fast as possible in small increments. There aren't many of us who are super-senstive like that, although the common trend in this forum is to start slow, rather than taking a high dose.
you seem to have the same problem I do. My body just does not want to go above the 25 marker.. You wouldn't think a little tiny increase would throw us off, but for some reason it does. Maybe our bodies do not need or want it at the moment. I will do 12.5 a week down the road, but I think I want to continue the next four weeks back at 25 to let my body balance and see where it is truely at...I am hoping it won't alter my levels the wrong way to bad in the mean time.. what are your levels now? Why do we have to reach certain levels other than the free t's anyway. Shouldn't we go by how we feel? It just seems alot of people have what is considered good labs, but feel worse than they did before... I don't understand that....
'feeling like I am in a cloud head wise' was a 'hypo' symptom for me. While you're adjusting, you will be getting both which makes it challenging, but if you write it down you can look back and see why you're feeling like you do. i.e. if I had a 'bad' start to a week, I could look back 3-5 weeks earlier and see I was wearing the aftermath of cutting back that week because the increase was too hard.
For me, and extra 25mcg a week was too much - but perhaps you could alternate, or do 12.5 a week? My system can manage 12.5 a week - at the moment I'm increasing 12.5 every 5 days.
For me, and extra 25mcg a week was too much - but perhaps you could alternate, or do 12.5 a week? My system can manage 12.5 a week - at the moment I'm increasing 12.5 every 5 days.
I also did not have many symptoms before I started meds. Just weight gain and puffy face.. Felt fine otherwise and normal. Do not feel mentally normal anymore. Feel like I am in a cloud head wise..
My situation is really wierd that is what is so scary. I had a tsh of 94 and a mildly low free t4. On only 25mcgs my tsh dropped to 32 and free t4 was normal in only two weeks...... So at the eight week marker we tried some mild boosts of having me add an extra 25 only once a week. I did this four about four weeks and it put me over the edge feeling so hyper although my tsh is still at 16 but the free t's are really at healthy levels... so, I cut back this week to 25 and I am not so fuzzy headed and dizzy right now but still feel a bit hyper. I was having blood tests every two to three weeks. The free's keep getting better but the tsh wont budge anymore. So, I have no idea what is going on.........
hehe - I didn't have a great doc; I used this site and argued with him; I had been through another illness with him so he knew I researched a lot; when I was 'hyper' because of an overactive nodule I had to do a lot of reading to make the decisions I did.
I don't know so much about Hashi's? Hopefully someone else will chime in with some links.
I do know that getting thick notebook and writing down what meds I took daily (that the doctor prescribed) really really helped me get some control back. Initially he put me on 25mcg and I realised it was too much for me on the 3rd day. It doesn't seem very usual for that to happen, but it does happen. In saying that my FT3 and FT4 were never off the charts, so by labs alone I was considered borderline hypo and my tsh only ever rose to 10. I felt lousy then so I can imagine you feeling terrible, if there is any comparison by lab numbers. I did have mild sleep aids to assist, and could tell how hypo I was by the state of my digestion (or lack of) and nails, and the fullness of my throat and tongue. So despite the meds sometimes 'moving' my stomach, if my digestion was slow and I had other hypo symptoms, I perservered with slowly increasing (as fast as I could and with my doctors blessing after I showed him how religiously I was writing things down i.e. he eventually was saying things like, ok work yourself up to 32mcg until the next blood test between 6-12 weeks from now).
When did you start the synthroid? And how often do you have blood tests?
I don't know so much about Hashi's? Hopefully someone else will chime in with some links.
I do know that getting thick notebook and writing down what meds I took daily (that the doctor prescribed) really really helped me get some control back. Initially he put me on 25mcg and I realised it was too much for me on the 3rd day. It doesn't seem very usual for that to happen, but it does happen. In saying that my FT3 and FT4 were never off the charts, so by labs alone I was considered borderline hypo and my tsh only ever rose to 10. I felt lousy then so I can imagine you feeling terrible, if there is any comparison by lab numbers. I did have mild sleep aids to assist, and could tell how hypo I was by the state of my digestion (or lack of) and nails, and the fullness of my throat and tongue. So despite the meds sometimes 'moving' my stomach, if my digestion was slow and I had other hypo symptoms, I perservered with slowly increasing (as fast as I could and with my doctors blessing after I showed him how religiously I was writing things down i.e. he eventually was saying things like, ok work yourself up to 32mcg until the next blood test between 6-12 weeks from now).
When did you start the synthroid? And how often do you have blood tests?
sorry for all the posts, Kristina sounds like you have a great doc. Wish I did. So how long were you on the 25's?
eight years ago but the the free t's were always normal and the tsh stayed in the teens, so I did nothing. I was fine for eight years really had no symptoms. Then all of a sudden my face swelled and my tsh jumped to 94 and free t4 fell only a little. Now my frees are in good range but the tsh is still 16. I can only do 25 right now. It has only been three months since on meds. I feel they are pushing me to hard and not letting me stabilize that is why I am just taking the 25 right now to see what happens. I feel better on it. when I do even a small increase I get really anxious, nervous and it just feels like to much right now.. does that make sense?
I had just managed 4 weeks of a consistent dose, approximately 3-4 months after i started the synthroid (so perhaps I was taking 25mcg by then). The blood tests earlier showed my FT4, FT3 and TSH still hypo with minor improvements (but at least trending in the right direction)..... I wanted to continue increasing but he must have noticed that the labs were trending consistently and asked me to hold for another 4 weeks, but come and see him again if I started feeling the hypo symptoms. I held (as he'd asked me to) and in 4 weeks time my labs were even better with no adjustment at all - because of the accummulation - it takes time for the liver to process the T4 medication into the useable T3, and accumulates i.e what you're taking today is actually peaking 5-6 weeks later for full use available to the body. The 'jolt' of what you take today, is your body accepting the hormone, not utilising it, and some people say that it is to do with a possible allergy to the 'fillers' in the meds. I'm keen to get prescribed the 50mcg synthroid which has no colouring, but at present I'm still using up the bottles of 25mcg.
Needless to say, I stayed on the same dose another 2 months before I felt the need to adjust again, which pattern has repeated a couple of times as my thyroid has been dying off; but the pattern depends on the individual and the diagnosis. I had been 'hyper' the previous year before RAI.
I don't mind you asking, but can I ask you what condition has actually been diagnosed?
Needless to say, I stayed on the same dose another 2 months before I felt the need to adjust again, which pattern has repeated a couple of times as my thyroid has been dying off; but the pattern depends on the individual and the diagnosis. I had been 'hyper' the previous year before RAI.
I don't mind you asking, but can I ask you what condition has actually been diagnosed?
Also, what dose did you end up settling at and how long did it take you to get there? You said at one time your doctor told you to hold, but then you increased again? what was the time frame. This information helps me monitor my situation so, if you don't mind me asking these questions.
Like Barb said, you can't compare to the amount of meds I need for my body. I don't have the fluctuations or progressions like Graves or Hashi's patients and I was told that, all going well, at least half of my thyroid would continue to function. I was hoping I'd stop at 50mcg but am a little higher than that, and potentially my thyroid may die off one day, given the effects of the RAI. But mine has been a one-way direction since having the the thyroid radiated.
From what I understood from others who has a 'bit of a jolt' on any adjustment, it levelled out over the coming weeks, and even once, when I was ready to adjust up, my doctor told me to hold, and magically my labs continued to trend better in the four weeks following with no adjustment at all - such is the exponential factor of accummulated medication!!! Eventually, I started to be able to feel when I needed an adjustment, and labs confirmed it. At one stage I was having labs 4 weekly - now it is every 4-5 months.
The racing heart etc may be part of the jolt of the amount of meds your body is coping with - your doctor may be able to work out how to increase at a slower rate, at the same time as quickly as possible to get your labs correct. Being hypo can cause other problems so it's ideal to get to your correct level with consistency between adjustments. Hoping you can work it out with him. On the leaflet with the synthroid I believe there is advice to start anyone over 50 on a smaller dose; may doctors seem to forego this and try to put patients on the dose they comfortably need to work up to, and some people manage the higher dosages with no problems!
From what I understood from others who has a 'bit of a jolt' on any adjustment, it levelled out over the coming weeks, and even once, when I was ready to adjust up, my doctor told me to hold, and magically my labs continued to trend better in the four weeks following with no adjustment at all - such is the exponential factor of accummulated medication!!! Eventually, I started to be able to feel when I needed an adjustment, and labs confirmed it. At one stage I was having labs 4 weekly - now it is every 4-5 months.
The racing heart etc may be part of the jolt of the amount of meds your body is coping with - your doctor may be able to work out how to increase at a slower rate, at the same time as quickly as possible to get your labs correct. Being hypo can cause other problems so it's ideal to get to your correct level with consistency between adjustments. Hoping you can work it out with him. On the leaflet with the synthroid I believe there is advice to start anyone over 50 on a smaller dose; may doctors seem to forego this and try to put patients on the dose they comfortably need to work up to, and some people manage the higher dosages with no problems!
that's the problem.. I guess I feel better a bit more hypo... I know it takes a while for full potential., but I react the same day. It just seems to be too much and I get dizzy., a bit to energetic racing heart and anxiety when I get dizzy. My frees are normal now, but tsh is still at 16. I guess we are not suppose to go by the tsh anymore but that is still a bit high.. I have been trying to increase the past month. I have altered taking the extra 25 a week, but now I think I am just going to let my body settle these next four weeks on just the 25 daily and hope for the best...what dose are you up to now?
When I started I was put on 25 and couldn't tolerate two days of it! I went down to 12.5 and increased as fast as possible; for me that seems to be an increase of 12.5 Weekly(!) over 3 weeks - a few weeks stable then increase again. (I would stay stable as long as possible before a blood test). My doctor has been okay with overseeing and assisting - I write down what I take daily (and the total of the 7 days prior) so that I can guestimate that I'll feel that week's potential five weeks down the track. Writing it down really helped me check what I'd taken, say, three weeks before, and understand why I was felling like I did! I tried increasing faster, but for me, my heart races, I get diarrhoea, and feel anxiety (and high bp). I seem to be 'sensitive' to meds, and while I wanted an adrenal check, it was refused.
My case was, thought, that after a low dose of RAI half of my thyroid (a nodule) has been slowing dying off and I've been increasing as that's been happening. The first 6 months were the hardest for me, and from there I was more able to ascertain how my symptoms were relating to either the 'hypo' or the 'meds'.
My case was, thought, that after a low dose of RAI half of my thyroid (a nodule) has been slowing dying off and I've been increasing as that's been happening. The first 6 months were the hardest for me, and from there I was more able to ascertain how my symptoms were relating to either the 'hypo' or the 'meds'.
They are correct...Everyone reacts different to things.
I have been on high doses for well over 20yrs (TT). I don't stress, nor have I ever had anxiety. My thyroid issues didn't affect me like others.
Do what is best for you and what helps you feel better. I don't know what they mean by "let yourself heal", maybe they mean "adjust to your dosage".
I have been on high doses for well over 20yrs (TT). I don't stress, nor have I ever had anxiety. My thyroid issues didn't affect me like others.
Do what is best for you and what helps you feel better. I don't know what they mean by "let yourself heal", maybe they mean "adjust to your dosage".
could this be why I cannot tolerate even the smallest increase without getting dizzy?
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As Barb said, we're all different. I've recently been switched to Armour and have been searching for the right dose for the last few months. Even with all my experience as a patient, it's still a daunting process to go through, and I've been on thyroid meds for 22 years.
I can sympathize with your anxiety. I remember being new to thyroid disease, and it is scary. About all I can tell you is it helps to rest and try to relax and do something you enjoy, since stress makes all my symptoms worse.
There really is no 'standard' dose that is effective for most people. If you read the other posts on this forum, you'll see evidence of some people on high doses and some on lower. And there isn't a 'one size fits all' medication either, since some folks do just fine on synthetic T4 and some can only tolerate natural dessicated medication, while others prefer a combination of both T3/T4 which can be synthetic or natural. Thyroid disease and what medication/dosage that works to alleviate symptoms is just as individual as you are.
Barb's right when she said the healing takes time. I think you are doing the right thing, going up slowly and keeping track of how you feel, but try to relax a little, even though I know that's hard to do when you don't feel well. I wish I'd found this forum years ago, it's been very helpful.
You aren't alone, there are (sadly) LOTS of us out here and we know how you feel.