I self increased thyroxine from 75 Mcg to 88 mcg (my GP thinks TSH of 4.9 is 'normal' and won't increase).
I felt under medicated on 75 Mcg and I know TSH should be lower as well.
Initially, for a few days, I felt really good with the increase from 75 to 88, split into 2 doses. However, about 9 days in, I have so much anxiety, it overwhelms me.
I talked to a private Doc as well and she thinks I can keep the old dose, or stay on 88 mcg, and work on adrenals to bring thyroid into balance.
However, my anxiety is getting worst on 88 mcg.
I already take holy basil and other calming herbs for the adrenals. And all my ferritin, iron, B12, D, folate, etc etc are in the ideal ranges (what is recommended here). Also, tried taking T3 before, didn't work for me.
Shall I switch to 75 Mcg? Or do one day on 75 and 88 the next day? Go back to 75 Mcg?
Feel confused about the dosing side of things, even the private Doc I went to see was not that helpful.
What worked for you, or what would be your advice?
Would really appreciate any help!
My latest results:
TSH: 4.9 (reduced from 6.6 in December on thyroxine 75 mostly, though also tried experimenting and took 88 mcg on some days)
T4: 45% of the range
T3: 33% of the range
9am cortisol: 384 (133-537)
Saliva cortisol levels are raised:
8am: 25.1nmol/L (high): < 20.3
12noon: 9.9 nmol/L (high): 1.6 - 5.6
4pm: 5.1 nmol/L: < 6.94
10pm: 4.9 nmol/L: < 7.56
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Juliet_22
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Thank you! The thing about my Ts is that they have been in that range before without as much anxiety. But I agree, blood work does show under-medication and likely the reason my adrenals are off too.
Thank you, will read the article! Yes, I go with Ts as well and understand the TSH point. That is the thing, my T3 has actually improved on the last test!
Recent experience for me reinforces DippyDame’s reply. I have had to have a good talk to myself. The rapid heartbeat definitely took me by surprise and eventually I was feeding anxiety into it, making it a vicious circle. This was even after a period of going back to my old dosage and after a very short try on T3. Touch wood I have now had five (I think) nights without the racing heart. It was blooming hard. I could see I had some benefits from the T3 experiment (remaining) but the rapid heart, I just could not deal with. Blooming ironic. It’s made me have a real rethink. I was just trying too hard. These life changing symptoms of hypothyroidism have been difficult to come to terms with, alongside the years I went undiagnosed. I did a year on ‘their’ prescriptions, found the forum, tried to follow advice to the letter BUT there has been a sense of haste in me. I did not want to waste any more time! Now that the symptoms have worn off (thank goodness) I will not be in such haste again. It’s been a salutary lesson. Either get back to where you ‘know’ and check bloods in 6/8 weeks OR try to stick with where you are and in 6/8 weeks and review again. I think I am only days ahead of you as I have been watching your posts as your experience has been close to mine!
Two extremely good answers here and a TSH of over 1 when medicated is ‘unusual’ if indeed the TSH agrees with the actual thyroid hormones at all. On 1st scientific principles, management of thyroid hormone replacement therapy using a hormone secreted by the pituitary makes no sense when you have symptoms and thyroid hormone levels to guide.
I had peaks and dips in my journey to full therapeutic dose and I popped it in my bio as a case study for others to read. My profile and posts can be accessed by clicking on my face 👍
Yes, been gluten free for over a decade! Did a whole iron panel, all looks good. Taking magnesium, iron, 2 Brazil nuts for selenium, Betaine, probiotic, vit D, vit B12. Taking a German brand of levo, not available here, but is lactose free and mannitol/acacia free.
I guess you'd also agree with the previous comments re the need to increase levo after 6 weeks?
Yes, been gluten and dairy free for over 10 years!
I reduced my anti-bodies from 600+ to hovering between 100-200 for TPO with normal TG. Tried LDL didn't work for me, made me feel bad even with the tiniest dose.
Not sure what else I could do to lower TPO further, if you have any advice?
I eat loads of organic greens, at least half a pound a day, so B vits should not be an issue, but I take B12. My folate back in Jan was 16.4 (2-26.8) without supplementation.
Thank you, I will retest again in 6-8 weeks after taking 88 mcg consistently.
You've had some great advice. I don't think you should go down as this is likely just a hypo symptom and if you're ever going to get to optimal it might just have to be a cross you have to bear.
I'm not sure of your activity/energy level but if you're feeling really jittery then go for a walk. That used to work well for me getting blood flowing to nerves and helped calm me.
Thank you, reading the advice here makes me realize that going down is not going to help as I need more thyroxine. Will retest after 6 weeks on 88 mcg and go from there. Keeping myself active for sure, I agree, it helps SO MUCH!!!
Right now I might have to do what Josephine said below as I am really finding it challenging, pulse racing, anxiety, jittery feeling. I think I will have to do it more gradually from tomorrow.
It could be your adrenal glands are kicking to compensate for not enough thyroid hormones.....this would make you feel jittery. Increasing thyroid hormones has to be done slowly with 6-8weeks gap between each dose increase because the body adjusts slowly. I would dial back on the exercise - it doesn't make sense to stress your body further. Once you've reached an optimal dose and your body has adjusted then that's the time to start slowly increasing exercise. You wouldn't run on a broken leg until its healed would you? So be kind to yourself. Your body needs the energy for day to day living currently.
I totally agree re adrenal glands. The thing is that I do have energy! I don't have fatigue, want to move and be active (used to be an athlete), but scaled back to walking, pilates, gentle things currently. I would love to go for a good run and a good gym workout, I have energy and desire for it, however need to address the current issues first, so just gentle things now.
I think I would need to alternate between 75 and 88 vs doing 88 every day as too racey on it if do it every day and BP and pulse starts to raise. From what I understand, dose increase is a challenge for some people and working out the right dose is also a challenge, I happened to be one of them! Forever grateful for this forum and all the support given here. 💖
I think a good short burst of energy expenditure like a run would be no bad thing. As long as it’s not long, taxing and arduous. It might help reduce your cortisol levels too. Being a former athlete your body is primed for it and you have decent energy levels. Just don’t do too much, find your sweet spot. And also have you tried yoga? Different breathing techniques really help calm anxiety and give you insight into your overall experience of mind/body.
Thank you! Unfortunately faster cardio triggers my pulse and BP atm, so as challenging as it is, I am holding back a bit, but still doing at least an hour of exercise per day. Intensity is not enough for me, so that is a big struggle. But you are right, exercise is the best thing for anxiety, everything just feels so good after! I do EFT (Tapping Solution app is amazing!) and now got into deep breathing. Totally agree, helps anxiety and lowers BP/racing heart too.
could try 75, 75, 75, 88 and repeat? I struggle to increase without getting side effects/feeling overmedicated with anxiety so I do the TINIEST of increase so that body doesn’t notice much… if you then need to increase you can do it just as gradually x
Ok, perhaps I need to do just that. Anxiety has been awful lately for me since the increase. Struggling big time. What are your symptoms if you increase too fast pls? How long does it take you to switch to a dose you should be on eventually?
Yeah I stuck with it. I took magnesium that helped. It was only because of people on this site saying to stick with it that I did. It's terrible I know. Especially when at work. You feel like a nervous wreck and it's embarrassing.
I wish magnesium helped me! I get full blown hyper symptoms. Tons of anxiety, loose bowls, raised pulse, raised BP that keeps me awake at night, feeling shakey, so it's not possible to do it for 5-6 weeks for me. Also, I can't even work when I get those symptoms. I will go slowly at this stage, alternating between 75 and 88 and will see how it goes. So glad you were able to get through it!
I too felt terrible going from 50 to 75. I stuck with it. It was never as bad again. But that was a number of years ago now and it was general brain fog, exhaustion not anxiety.
For me anxiety is worst if I am on too little. Also my pulse, which is fast anyway because I have Afib all the time, rises and my general wellbeing plummets.
The way I've tested out my theory recently is to take 2.5mcg of pure T3 when I feel anxious and see what it does. I was prepared to feel worse for a good chunk of the day. But the anxiety went almost immediately and stayed gone for the day. Thus proving I needed more T3 not less. It's harder to do that experiment with T4 as the response time is much lower.
I’m on Metavive and when I try to increase the dose the same happens to me
I find that if I return to the lower dose for a few days until elevated pulse and anxiety subside and then restart the process but by a smaller amount, my body copes better
I do this by either by taking a smaller increase daily - in my case by halving a capsule - or alternating a whole capsule with a half. By how much this is done varies for individuals
For me, the higher my frees get the smaller the dose increase needs to be. It’s as though my body has become more responsive and reacts more quickly to the increased availability of thyroid hormones. Yes it takes a bit longer to approach optimal but the ride is less bumpy
That makes so much sense, I also found that returning back to the old dose settles my symptoms, but then if I stay on it for too long, I start to feel low. So you increase slowly, like higher dose every few days at first?
So you increase slowly, like higher dose every few days at first?
Yes, you’d start to feel low when on an inadequate dose but a higher dose every few days is definitely not slowly
It’s important to remember it’s not just about dosage but also intervals between increasing/reducing. It’s different for everyone so I can only speak about my experience which was: if I increased by too much OR too soon I began to feel “over-medicated”. This misled me quite a few times before I eventually realised I wasn’t truly over-medicated , just over-medicated at that moment in time and that if I took a step back and re-attempted the increase with a much longer interval or a smaller dose or both, the transition was less eventful
I only say what the sage and wise say on here all the time. Low and slow because not only can you speed past and miss what works for you but it’ll be a horrible experience into the bargain, causing a lot of unnecessary anguish and in the end more time is used than if you’d taken the slower approach at the outset
Tentatively, this is my experience too. When I felt like Juliet_22 I reduced back to my old dose in desperation to get rid of horrible ‘new’ symptoms - which has worked. However I did not take the next step you suggest (frankly from sheer terror) although that’s exactly where my thinking is taking me. I am conscious of other advice saying the body does not like too many changes in a short space of time! However an absolutely tiny increase like you are suggesting seems like a very good idea plus you have tried it and found it to work. I am presently languishing (I wish that was a good state) waiting for my next blood test to confirm just how much my state has dropped. I think I have let a month pass now (have to keep checking because I forget) since I took the last dose of T3 and messed everything up. So just another two weeks until I test and see if I can start again. Thank you for posting Juliet_22 and Noelnoel .
Your post and the comments has really hit hard with me.. This is exactly what I'm going though. My body feels like it craves more levo. Yet when I've increased my dose, my symptoms all increase and I feel jittery and anxious as well as terrible aches and pains. Then I have a few good weeks and I think we've cracked it and then I go back to normal, feeling bad. I can now see the pattern. I also feel as if my body seems to take a lot longer to settle on a dose than 6-8 weeks. Or maybe the dose increase needs to be smaller. Unfortunately each time my Endo has increased my dose as I feel terrible, when I report these symptoms, he lowers my dose... Its a vicious circle of getting know where. I hope you start to feel better soon..
I hope we will, yes! Right now, I'm going to experiment with 75 for 2-3 days and then 88 and then keep on repeating that to see how that works. A warmer weather is coming too and that ALWAYS makes my thyroid better. Keep me posted on your progress as well please and all the best!
Thos might be an unusual way of looking at it, but maybe try to view that feeling of anxiety as a positive thing? It should be temporary—it’s an adjustment period. On the lower dosage of levothyroxine your body simply didn’t have the energy for your mind to care!
Obviously if it goes on for more than a couple of weeks more have a rethink—but I think it’s likely things will settle soon.
Hi - this exact same thing happened to me. I felt rubbish ( undermedicated) on 75 and felt totally stressed out on 88. I tried several times - but it was the same. I also suffered from terrible migraines on 88.
I then changed to NDT. This has been a game changer for me. It took a few months to get the right dose, but now I have been on Armour thyroid for a year, my levels of T4 and T3 are optimal and I feel better than I have done for years. My TSH is suppressed, as you would expect, so I only discuss thyroid matters with my private doctor. My GP doesn’t know what NDT is.
This option is not cheap but my motto is I’d rather feel good than have that extra holiday a year.
So appreciate you sharing your experience! How did you react to NDT when you first start taking it? How long did it take you to start feeling better with NDT?
I felt better almost immediately- I increased my dose slowly over 2 weeks. I’m on 150 a day (2.5 grains/ tablets) a day . I take 1.5 in the morning and 1 in the afternoon. I also take supplements: D3 (5000), B12, magnesium and NAC. I recently had a blood test and my TSH was suppressed ( expected/ normal when you’re on T3) , T4 and T3 optimal and for the first time in years my vitamin D levels were optimal - hallelujah!
While I was on Levo I was either feeling tired and aching or anxious and with a terrible migraine , leg pain, brain fog and unable to lose weight.
If you would like the name of the private GP I use ( virtual consultations) message me privately. She will look at your sex hormone levels as well and vitamin levels- A much more comprehensive approach to treating your thyroid, rather than just relying on a TSH level that basically is an outdated and unreliable method of thyroid monitoring.
So glad to hear you've worked it out and feeling well! I've messaged you ))) My concern with NDT is that I had a bad reaction to T3 before, I tried taking it 3 times before and experimented with all kinds of things with it. It seems that some people feel better on NDT and for others it doesn't work. So it's a journey for sure.
I ended up going to a private endo. She says that the most important thing is TSH and ideally it should be no more than 2. I was feeling tired but T3 and T4 were within parameters. My TSH was 17. My GP didn't want to increase my levo, but the consultant said I was under medicated and put it up immediately. She said that T3 and T4 could be higher as long as you don't get hyper symptoms. I feel much better now. TSH is 2.5
It has been a month since you posted. Did the anxious feeling finally go away? I increased from 37.5mcg to 50mcg 8 days ago and can't shake this anxious feeling. I need to hang in there for 5 more weeks to test. I hope this anxious feeling goes away soon. I am sure the anxious feeling is part of being hypo, but the increase seems to be increasing it at the moment. I am also on 5mcg of T3 and have been for quite a while now. I don't think it is causing me issues.
Trina, I had to back off tbh as my pulse and BP was too high. I am alternating and still trying to find the right dose for myself. But at least my pulse and BP has been stable lately! I seem to feel more with it as well, able to do a lot more. 88 mcg all the time was too high, I struggled to do anything due it constantly triggering higher pulse and BP. Beta blockers were a disaster for me. It was aweful. Right now, I am testing 2-3 days on 75 and 1 day on 88. Anxiety is still there as I am hypo. But some things are better and the main thing is that I can function more! Would alternating a bit perhaps work better for you? Every other day maybe?
I am glad you are getting some relief and the pulse rate and BP are down. I don't have any symptoms like that, so I am going to try and stay the course for now. I am in such a fog much of the time and just have a strange anxious feeling. I have moments of feeling "normal" and then it seems to just vanish. I am hoping it starts leveling out over the next several days.
I was on 88mcg years ago and never had an issue, so not sure why it is so hard to get up on the thyroid this time around. I am basically starting all over...long story. I think my symptoms are a lot worse this time around though, so that is probably why.
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