Hi everyone, I’m just wondering how you adjust to a new dose? What kind of symptoms do you go through when upping a dose?
What kind of symptoms do you go through when up... - Thyroid UK
What kind of symptoms do you go through when upping a dose?
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Angie10116
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shawsAdministrator
When our dose is increased, in theory we should begin to feel much better and find that our clinical symptoms have reduced or are reducing. We should then have small increases in dose after each blood test to reduce our TSH to around 1 or lower. Free T3 and Free T4 (rarely tested) should be in the upper part of the ranges. We should now begin to feel improvements and be symptom-free.
Yeah unfortunately it doesn’t work like that most of the time :/ my doctors made it crazy for me.I had RAI treatment for hyperthyroidism ( graves) in April of this year. Then after 2 months I was diagnosed with hypothyroidism with a tsh of 60. I was put on 50mg of Levo for 2 weeks, then I ended up In ambulatory care because I felt so anxious, with bad headache, thirsty, and cold sweats. They moved me to 100mg for 4 weeks, and 150mg onwards. This made me over medicated.
So within like 3 months, my tsh went from 60 to 15 to 1.5 to 0.20 (hyper) back to 35.06. It’s been hell!
For me, headache and earache and feeling a bit hot but it goes after a few days.
Thank you for sharing!
I've found I feel unwell when I increase my dose so now I split it for a few days. Take same dose in the morning and the the extra 25mcg in the late afternoon an hour before dinner. Did that for about six days and then took full dose in the morning and I was fine 🙂. Hope that helps.
Lovely, I’m glad that you found something that works for you 😊 thanks for your comment !
Angie, I think you need to take a step back and review 2 things. One, is levo alone the right treatment for you? Two, it seems that your dose changes were large and very fast, which would knock most people for six. So at the moment you don't know if it was the fast and large dose changes that didn't agree with you, or if you are never going to be fine on a treatment of levo alone.
Unfortunately there's no easy way to find this out. You have to start again with a low dose of levo alone and raise slowly with small doses. After a time on this you will find out if it is working for you. If not then it's time to look at your other treatment options using NDT, T3, T4 or some combination.
Hi June. Thanks for your reply. I agree, I’m only on Levo right now and going to try to get my levels optimal on this. You probably read my bio and saw how much my tsh has been changing over the last few months. I’m now under active again!
It's really worth it to persevere with levo as your first choice of treatment because that way you find out once and for all if you are a good or a poor converter of T4 > T3. This is really important to know as it informs all your other treatment choices. And you might even find that levo alone works for you, which would make your treatment much simpler.
Thsnk you. I’m just so so hopeless right now and so tired. My arms keep going numb and I feel so shit and tired. I went from a tsh of 0.20 to 35.06 within a week… I’m back under medicated and I’m so sick of it.
I understand, and I've been there more times than you might imagine. What needs to happen is to get on a stable dosing regime, no more changing too fast or too large. The body gets all upside down with that. Pick your levo dose that you know will not be too much, probably somewhere between 50 - 100 mcg then stick there for 6-8 weeks then test. After that make one adjustment up or down, preferably 12.5 mcg, and stick on it for another 6-8 weeks then test. And so on till you feel you have arrived at an optimal dose. It will take time but resist the temptation to rush it. That's my own weakness and it's never got me anywhere good.
Thank you June. I know that I should be on 100. That’s where I felt my best. I was on 100 for 4 weeks, and then moved to 150 which over medicated me (doctors orders, I had no idea what I was doing). But I remember I felt best at 100. My new endo who clearly doesn’t know what he’s doing, stopped my Levo for 1 week and I went under active. He then said to start at 50mg! When we know that I felt best at 100!! Now he told me to move to 100 but I’m scared that my anxiety will get bad again with such a fast increase. But I might just do it and not change for 6-8 weeks. I don’t know!
Omg your poor body.
Omg don’t even 😂 my body ( mostly my mind) has been on a bloody rollercoaster!
We’re u on the same dose of T4 that your tsh was 0.2 and 35?
I was on 150mg for 3 weeks, and my thyroid went hyper (0.20 TSH). My doc told me to stop meds for one week , which I did. This made me very hypo, giving me a TSH of 35.06
U should’ve stayed on 150!
Don’t u not have a thyroid? Why would u stop meds?!
OK, here's the thing. T4 levo builds up slowly in the body. You could just go straight to 100 and feel good at first but after 2 - 8 weeks that could change to feeling overdosed on 100. It's very tricky and I should know because I've overdosed on T4 myself and it was a most unpleasant experience.
If I were in your shoes I'd stick to the principle of making small changes slowly, even if you have to tolerate being undermedicated for a time. 50 mcg is a starter dose, so what about moving to 75mcg and sticking there for 6 weeks. This gives your body time to adjust, which it has not had so far and is very necessary. Then go to 100 on your next change if you are still hypo. After that only 12.5 changes up or down every 6-8 weeks. If the change doesn't agree with you then drop back to the previous dose that was better.
Your endo sounds like a bit of a cowboy to me, shooting fast and loose, and it couldn't be more inappropriate for the endocrine system which is a moving target and takes the time it takes to settle into a new stable setpoint of TSH, T3, and T4. That's why you have to wait 6-8 weeks after every change, to see and feel the full effect.
The mindset you need to your approach to treatment should be that you are preparing for a marathon, not a sprint. Some people find their optimal treatment relatively quickly. Others like myself take years of trial and error and have a steep learning curve along the way. So best to settle in for the long run while hoping that you may become optimally treated on levo alone if you maintain slow advances as I have described.
Yeah I’ve been on 75 for 2 days now, but I’m just having more hypo symptoms because I think my body is trying to adjust to everything.
The hospital doctors told me to move so fast. I met my new endo when I was over medicated, and he’s the one who told me to stop Levo and then got me hypo again. He doesn’t seem like he knows what he’s doing honestly. It’s so discouraging when even endos don’t know what they are doing.
I’m ready for a marathon, the only thing that I’m stressing about is work. I hate that Levo works so slowly because life doesn’t wait for you, it moves on whether you’re with it or not. I’ve been off of work for 2 months and if only I was taking things slowly, I’d probably feel better than I do right now.
It's hard to be patient when you are feeling crappy and you have pressures on you like work.
There's no way that you can feel what 75 is doing for you after only 2 days, which I think you know. Just hold there if you possibly can. Changing again will only make things worse. You need to establish a base line where you know you can drop back to if you go overdosed.
You are disillusioned and discouraged because you hoped that getting an endo would solve your problems and instead his advice only gave you more.
This is the same path that many of us are on, or have been on. You are not alone. The really good thing is that you have come here and are asking all the right questions. You might not like the answers but keep asking and you'll find others who have found ways of dealing.
Nobody is happy to have the 'thyroid issue' card dealt to them, believe me. It's an altogether crappy hand to get. But others have overcome it, which means you can too.
Yes, I understand. I will stay on 75mg as you and many others have suggested 😊
Yeah it’s horrible! This community definitely helps, and people like yourself are really appreciated.
That’s right. And the fact is, I haven’t had a stable tsh at all for the past 3 months. I’ve been on a rollercoaster. Not only that, but I haven’t found my dose and been stable on it. So it makes sense that I feel horrible right? I’m just so scared that even when I get optimal, I will feel the same as I do now. Which I know isn’t true. There’s no reason for me to be symptomatic if my thyroid has enough T4 and t3. It’s just my negative side talking and making me feel negative.
Yes, this 'rollercoaster' has definitely made you feel worse than if you had been on a steady and reasonable dose, even one that wasn't quite optimal. I think that you will feel better than you do now if you hold steady on 75mcg for 6-8 weeks, even though this may still not be enough.
Being hypothyroid does affect mood and make some people feel depressed. So this can accentuate your negative feelings and make you obsess about your worries, which if you were feeling 'normal' you would just shrug off. It's something to watch out for when you spiral down. Just remind yourself that it's the 'hypo' talking, not you. Well, you are already doing this, which shows that you have the self awareness to manage it.
Also, keep an open mind about what will work best for you. Some people don't need T4 at all to feel well. It's not about replicating what nature does but finding out what will work now for your unique pathology. For a while it can feel like one step forward and two steps back but this is normal. I understand that you are feeling scared because I feel scared myself when I've tried something and it's gone wrong. But you just have to do your best to understand why it went wrong then try another plan and don't make the same mistake again. You are doing this perfectly already, you are just not familiar with the process yet and your confidence has been shaken by this stupid endo who instructed you to make a mistake, so it wasn't even your own mistake that got you into this situation. You are going to be fine, optimal or not.
I definitely agree! Going so fast has really had a big impact on my mental health, mainly just anxiety and depression as you mentioned.
Yes! I’m definitely obsessing over the way I’m feeling. It’s such a horrible and unnatural feeling, but I’m hoping that goes away because it’s actually exhausting. I don’t know if you’ve ever felt this way, but it’s almost like ocd about the way I’m feeling and trying to analyse everything! I can’t even focus on normal things like, “Hmn I don’t know what to wear”. I miss first world problems lol
One step forward and two steps back is definitely something that I relate to! When I was feeling my best, I had a great day out with my parents. It seemed like I was back to myself for a little bit.. not 100% but it was the clearest I’ve felt in months! Then I came home, went to the shop and had a massive panic attack that caused derealisation.. it’s crazy how fast it can change. But that was probably the fact that my body was trying to adjust way too fast.
Thank you for your kind words. You’ve really helped me today. Whenever I’m feeling particularly down I will come back to this post and just re-read what you said. It’s so easy to spiral and get lost. So again, thank you so much for your time and patience with all my questions 😊
I was a nervous wreck when I got upped from 50 to 75 . It lasted about 4 or 5 weeks then felt great. Now feels like it's wearing off so had more blood tests to see if I need more levothyroxine or vitamin mineral deficiency. I was going to give up the levothyroxine all together but got told on this site to stick it out so I did thankfully.
Thank you for sharing! It’s crazy how anxious such a small increase can make us isn’t it. I’m so glad that you feel better and that you’re not so nervous now😊
It's not uncommon to go through the 'sweet spot' into overdose territory, which sounds like what happened to you on the day out with your parents and then the day after. This is another reason not to make large changes in one go, because you want to edge up to the sweet spot and stop, not keep on going.
Symptoms of overdose can be anxiety and panic attack. I've also had scarily elevated heart rate, uneven heart beat and high temperature. Sometimes you get a warning like a feeling of inner tension or increased pulse rate or resting heart rate. You can use a Fitbit or similar to monitor these things. Also get a thermometer and a home BP monitor and check your vitals regularly. Again, if your last change was small then there's less chance of going all the way into an extreme reaction.
You have clearly realised that the mental health side of this can also be challenging, not just the physical. And sometimes it's a struggle to keep it together when you are feeling the most mentally impaired and the least able to do so. But knowing that your mood is grounded in your physical hormonal condition should make it a bit less scary, a bit like the monthly PMT crazies. You haven't become permanently unhinged. People do seem to regain their mental clarity and focus when they get enough T3 in particular.
I've enjoyed our conversation today and if it's helped you then you're welcome.
It actually all happened in the same day which was so strange. Yeah I definitely agree. I’m sticking to 75mg and just seeing where that goes.
I’m sorry that you went through that! My overdose gave me the worst anxiety I’ve ever had.. I thought that I was having a mental breakdown. I had constant rushes of adrenaline pouring through me. Doctors gave me antidepressants without checking my thyroid..
Yes, I have an Apple Watch so I monitor my heart on that. I don’t know how accurate it is but it does the job.
Yes! The mental side of things is the worst for me, but as you say, hormones mess with a lot more than just your physical body. And things do get better… I’ve just been wrongly medicated so I haven’t felt the god side yet. But as you said, I will get there.
I’ve also enjoyed this convo, I really appreciate it! If you ever need to rant or just talk, then you know where to find me 😊 have a lovely night.
I hope you threw those antid's in the bin. Or if you started them that you can get off them again asap. Doctors! Don't get me started on how often people get fobbed off with antid's when they have a thyroid problem.
Well bye and you have a great night too.
I took them for 4 weeks because I felt like I was going insane with the anxiety. But I’m coming off of them this week💪😊 have a great day!
I'm glad to hear this. I am all for using these kinds of drugs to get through a temporary stressful situation but it's so easy to get stuck on them for life. I have a friend that this happened to. And GP's often don't encourage people to get off them because they are afraid of being blamed if the person then commits suicide.
I think you are on the right track now, to get yourself stabilized. In 6-8 weeks when you get your test results on 75mcg and you know how you feel, get back on here and get advice on what your test means and what to do next. Up to you how you proceed with this endo and he may still be useful to you in some kind of a way, but if it were me I'd trust the experienced people here who've been through it more than I'd trust his judgement.
In the meantime, take inspiration from the one good day you had when you felt almost like your old self again. It happened once so it can happen again and you will be learning all the time how to get there and eventually stay there and get your life back again.
I’m so sorry that your friend Had to be put on them. Doctors actually don’t care, they just try to hide your symptoms with these drugs without even offering therapy first!
That’s right. It’s such a long waiting game, and it’s frustrating that you can’t just skip all of the bad weeks and get to the good bits. I feel so drained, my head hurts, everything is numb, I’m so weak. Also just a bit of trouble breathing and chest pain. Sometimes I’m scared that it’s something else because of how bad I actually feel. But the last few months have shown me just how bad the thyroid can make you feel.
That’s exactly what I will do. Exactly, I need to have hope that it will indeed happen again🙏 Thank you!
I also found that reading the profiles of some of the old hands here, like Shaws, Greygoose, Tattybogle, Seasidesusie, really helped me to put it into perspective when I felt bad myself. Many people have been through hell, absolute nightmare, with thyroid issues but have overcome them and are now well or at least much better. Have a browse around. Although I get it that you feel terrible now, relatively speaking your story is far from the worst of what some people here have had to endure and for how long. Perversely, knowing that helped my anxiety about how ill I felt in the bad times.
It definitely helps to see that people went through similar things and got out on the other side. Thank you, I’ll have a look.
Of course, I’ve only been like this for 3 months.. some people have to deal with feeling horrible for years. I empathise with them so much!
On the topic of reading, there are lots of books out there. If you are going to choose one book then I'd recommend 'The Thyroid Patient's Manual' by Paul Robinson. He's fairly up to date and the book gives you a great overview of all that you are going to need to know for a while. There's a section on the use of levo T4 only.
He's also got a website with many informative blogs :
paulrobinsonthyroid.com/blo...
Thank you for the recommendation! I’ll give it a read 
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