I have been on 5mcg T3 for about 2 months and 25mcg of T4 for a little over 4 weeks. I tried 10 days of 50mcg after a few weeks on the 25mcg, but the increase was too fast. I felt great for a few days and then things went downhill and I got jittery, emotional, etc. I have been back on 25 mcg for 7 days now.
My mornings are the worse times and I hope this resolves once I get my levels optimal. My body temperature is very low, my brain runs at a very fast speed, but my body is very slow. These have been some of my worse symptoms. I was put on Adderall and it helps a tiny bit, but nothing like my friends with ADHD says it helps them. As the day goes and into the evening, I am much better. I have many other hypo symptoms, but this morning cold out of sorts feeling is by far the worse.
My low body temperature has been noted by doctors and is on my medical records for at least a decade. No doctor has ever mentioned it and I was not aware until electronic medical records became available.
When I would go to doctors with my symptoms (including dry skin, hair falling out, cold, constipation, etc.), I would be told my thyroid was in range and that it was anxiety. I tried many antidepressants and they didn't help.
I finally was out of range and put on levothyroxine and did well for a few years and then crashed again. Tried all the antidepressants again and little to no help. I was told my thyroid numbers were fine.
Should this get better the longer I am on thyroid replacement and get my levels up? Did anyone else experience and felt better after being on thytoid replacement? I just want to be the happy, morning person I use to be.
Since I went up to 50 mcg for 10 days and back down to 25mcg, my doctor wants me to start over waiting 6 weeks to be tested. He does test TSH, FT4, and FT3.
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Trina64
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Hi Trina64, Increased anxiety has been the worst symptom of having a thyroid condition for me and it is always worse if thyroid medication or key vitamins (ferritin, folate, vitamins B12 and D) are not optimal. I too have been offered antidepressants on numerous occasions but, after receiving support and advice from this forum, I didn’t need to take them. What is key for me is to increase (or if needed, decrease) thyroid medication super slowly. I use a pill cutter and only adjust Levo by 12.5mcg alternate days at first. I wait a full 8 weeks on a consistent dose before retesting levels.
Thanks! I take Vitamin D and doing well with that my ferritin and B12 are fairly high in the range. I have had a ton of bloodwork done in the last few weeks and everything looks great. My folate was not tested. I guess it will just take patience, which i have ran out of. I think if I can get my my morning body temperature up, I would feel so much better. I am generally a totally different person in the afternoon and evening.... calm, busy, happy, etc. I almost hate going to bed because I dread the next morning.
I was on NatureThroid in 2017 and was doing great until it went out of production. I tried NP Thyroid and felt like it was inconsistent, so starting over with a combo of levothyroxine and cytomel.
I am at work with a sweater on, blanket around me, and space heater going and have a hot drink. I know the thyroid has to get in at the cellular level and it takes a long time.
I ordered a heating mattress cover to see if that helps. I get it today. If I raise the thermostat, then I can't breathe.
I found that taking a daily tumeric supplement (with added ginger & black pepper for increased absorption) improved my circulation. I know others on the Reynaulds forum rate Ginkgo Bilbao too, but I’ve not tried this myself.
How long did it take you to start feeling much better? I probably tried going to 50mcg too fast and it has set me back a little bit. I was on it for 10 days and this is day 6 off of it, so hopefully things settle back down to my normal tired soon.
It took several months for me to slowly optimise both my thyroid levels & key vitamins. My mental and physical health improved greatly but it wasn’t a ‘quick fix’!
Well, that doesn't sound like much fun. I am trying to work and some days seem so difficult and other days are better.
Since my numbers are not far off, I am hoping it doesn't take months. My TSH was 2.865 (.4-4.2), T3 3.0 (1.5-3.5), and T4 .7 (.6-1.5). This was after being on T3 only for 4 weeks. 25 mcg of T4 was added and instead of waiting it out for 6 weeks or so, it was increased to 50mcg (at my request), but that only lasted 10 days. I was starting to go off the rails...crying, anxious, moody. The crying and moodiness stopped and just left with a jittery feeling.
Today is the 6th day off the T4 and I still feel the effects. I hope it goes away in the next few days. The increase had a very quick effect on me and I didn't expect it. Prior to the increase, I was tired and had brain fog. I am now less tired and foggy, but very jittery. My endo said that I could just not take T4 for a few days to clear my system quicker and then restart the 25mcg, but I think I would rather come down more slowly. There harsh ups and downs seem to get me into trouble.
I am glad you got a handle on your mental and physical health. I am generally an upbeat of fun loving person and rather healthy for 59. Most people think I am in my mid-40s. I just don't recognize myself right now.
Thanks Buddy! I look back at some of my labs and I was treated like a hypochondriac when there were real physical issues. Now I have to spend the next several weeks/months digging myself out of this hole and still try to do life. UGH! I will get there, but I just don't know when.
I was diagnosed by my GP as having ‘health anxiety’ & referred to a psychotherapist. I’m ever thankful to SlowDragon , greygoose & others for helping me realise that my symptoms were related to me being under medicated thyroid wise & not having optimal key vitamins. Best wishes to you 🦋
I started on 37.5 mcg this morning, so hopefully that is what my body needs right now I am hoping it doesn't take long to settle in. I was a complete mess yesterday after going from 50mcg to 25mcg for 6 days. Since the first few days after the reduction were pretty good, I am hoping the middle dose is what I need right now.
Sounds like an adrenal problem to me. Have you ever had your cortisol tested?
I felt great for a few days and then things went downhill and I got jittery, emotional, etc.
So, are these symptoms you had before treatment? Or are they new? It could be that you got them because your dose was still too low. It regularly happens that we feel great on an increase for a few days, and then symptoms start creeping back in - either old ones or new ones - and it just means that we need another increase in dose.
If you can share your thyroid related blood test results (with ranges) - along with symptoms people can perhaps give a bit more insight from their lived experience. Also have you had your antibodies tested? Also, I know they say once the diagnosis is confirmed there is no need to check, but I do wonder if a Hashi's swing can be seen in the results as sometimes we can be on the same dose, taking the same supplements, all variables accounted for and still be 'out of whack' for a period of time. Oh for a tardis to go back and get some samples from myself from periods that I now suspect were Hashi swings
My antibodies have been checked several times and they have never shown up. They were just checked again last week and still nothing. I think the main issue is that I have grown impatient and try to raise my dose too quickly. My last blood work was:
My TSH was 2.865 (.4-4.2),
T3 3.0 (1.5-3.5),
T4 .7 (.6-1.5)
At the time of this bloodwork, I was only on 5mcg of T3.
My endo then added 25mcg of T4. I requested the T4 to be increased to 50mcg of T4 after 2 weeks. I felt overmedicated about a week later. Maybe the original 25mcg was starting to kick in and I was just impatient. I have now reduced back to 25mcg about 6 days ago and need to wait another 5 weeks to let everything settle down and get retested. I am just hoping that once on the right dose and stable, some of these strange symptoms go away. Sometimes I am my own worse enemy...maybe. It is possible that 25mcg is not enough, but I guess I have to give each dose a fair amount of time to settle in.
The first thing my endo did was test my cortisol it was 12.1 [8-25] taken first thing in the morning.
These are the symptoms I am trying to get rid of and started prior to treatment this time around. They came out of nowhere after being on T4 thyroid for some time. I did not have them when first diagnosed. I am now guessing my doctor just kept me in range even though I was very symptomatic. Once the mental health issues started, then I was prescribed anti-depressants and they didn't do much but make me even more tired.
I saw a functional medicine doctor and was finally doing well on NatureThroid until it went out of production and then tried Armour and it was a not a good fit. I then didn't take anything for a few years. Found another functional medicine doctor and he tried all doses of NP Thyroid and same results as Armour. I gave up and just didn't take any thyroid for the last year or so.
I found an endo and he actually started me on T3 and my level were at 3.0 (1.5-3.5) after 4 weeks. They were 2.8 prior to adding the T3. He then added 25 mcg of T4 because my level was .07 (.6-1.5) and TSH 2.865 (.4-4.2). He is a TSH doctor, but at least believes that it should be closer to 1 and does consider symptoms.
I requested that I try 50mcg T4 after 2 weeks on the 25mcg. I felt better for a short while (still have the crazy morning stuff and low temperature) and then I felt worse than before the increase. I am guessing I just tried to increase too fast and I need to slow it down and wait it out for 6 weeks or so, no matter how bad I feel. I really hope that once I am stable and in an optimal range, the crazy morning stuff will begin to go away.
Is it possible that I just tried raising too quickly and it caused worse issues than the original hypothyroid symptoms? I wasn't anxious like this before the increase. I just was very fatigued and had bad brain fog.
I have become very impatient because I have dealt with this for so many years. I probably do myself more harm in the long run than good because I want to hurry up and get there. Logically, I know it is a marathon and not a sprint.
I am supposed to test again in about 5 weeks. That will be 6 weeks after being back on 25 mcg of T4.
I am quite new to the forum and only 1 year into my thyroid journey, so can’t give advice yet but I do want comment just to say that you are not alone with how you are feeling at the moment.
I have had anxiety and OCD all my life, but I was doing well until I was diagnosed with hashis by chance (new doctors did a new patients full blood screen). I then started medication, changed dose up and down a lot (including a period where I stopped taking it completely) and my anxiety, ocd and depression have flared severely throughout the last year. My reason for sharing this is that when I first posted on the forum some members shared their story with me and it helped to know I wasn’t the only one. Despite having had anxiety before I have never woken up with anxious thoughts in the morning like I do now. I am about to start adding T3 and I have hope that once we find the right medication and dose this will get better, this has happened for other forum members, which gives me hope. Sending my best to you.
The one thing that keeps rocking me to my bones is that so many people come off replacement hormone therapy- whichever type it is 😱. Doctors should be really spending some time to explain in depth. When you start taking thyroid hormones your natural feedback loop is interrupted and the thyroid puts its feet up so to speak while the replacement thyroid hormones get to work. At leat that is the idea. I was grossly under medicated for 6 months and the effects were horrendous. I was in a worse situation than being hypo, not surprisingly as my thyroid had put its feet up too!
Please guys start self advocating and working out the solution for yourselves. All I can say is read read read as this is what I did. Me saying ‘It’s not ideal’ feels like like a gross understatement.
And depression and anxiety are very real symptoms of being hypo. If you read by bio I have written it as a case study to inform others . A few caveats- we are all different in terms of the solution but generally hit many of the same sticking points when trying to get a therapeutic dose of thyroid hormones.
I’ve also written a few posts on myths and self advocacy.
Hi Charlie-Farley, I couldn’t agree more, I found this forum after my dose changes and coming off Levo (gp agreed) and I so wish I had found it sooner. I now read through posts, listen to podcasts and have learnt so much. I am advocating for myself now and following the advice from the forum. I think Trina64 is at a different stage in the journey but I wanted to post my support as I know how difficult it can be to live with anxiety. I am really grateful to everyone who has given me advice along the way.
I am hoping this new endo will work with me and help me get my TSH down and my T4 and T3 up. I was there once on NatureThroid and felt great. I just wish it would happen more quickly than it does. Right now I feel like I am on a rollercoaster. I have some good times and then some really awful times. I hope and pray that over time, things will get better and better. I just don't recognize myself anymore. To the outside world, I look normal, but I don't feel that way inside.
The how you look as compared to how you feel is just awful- at my lowest point I had no expectations to live beyond a year. But! I found this forum and they supported me and here I am feeling relatively well though I do need to shake some weight off and stop hammering drumstick squishiest and Haribo and choco. 😬👍
I hope I feel more like myself in the coming weeks and months. The last two days weren't so bad and today I just feel ill. I am at work and I can't focus and my body feels like it wants to run away and be done with this entire mess. I know I have to persevere. So far, my endo has been on board in helping me. I hope it stays that way.
OK, so your cortisol is pretty low first thing, and that could explain why you feel worse in the morning.
Cortisol is made by the adrenal glands, and is supposed to be highest early morning to get you out of bed and started on your day. However, when you are un/under-treated hypo for a long time, with too little thyroid hormone being produced by the thyroid, the adrenals take up the slack by producing more cortisol. But, they can't keep that up forever. They start to produce less and less in the morning, when you need it. But, they are programmed to produce a certain amount during the day. So, they continue straining to make enough cortisol until they reach their quota, which could be early afternoon, could be bedtime.
Cortisol is supposed to be lowest at bedtime, so that you can sleep. If your adrenals are failing, you won't have good sleep because your cortisol is too high. You might have trouble dropping off, or you might drop off and then wake again and be unable to go back to sleep. So, how is your sleep?
The good news is that, unlike the thyroid, the adrenals can recover. A lot of the time all they need is a bit of TLC: make sure you get plenty of B vits, vit C and salt. The adrenals need lots of all three. As much rest as you possibly can. And, a high protein breakfast as soon as you get out of bed. That could work for you because morning cortisol is still in-range, even if it's low.
You might also like to do a 24 hour saliva cortisol test to see what your levels are at other times of the day.
Forgot to add, if your cortisol is too low, your body will have trouble using thyroid hormones.
Thank you Greygoose - if you don’t mind I’m going to save that with your name so I can reference in future. I knew there was someone on here with that knowledge. 🤗
My sleep is starting to improve since starting thyroid. For the longest time I would fall asleep, but then wake up a few hours later and not be able to go back to sleep. I hope it continues, I recently starting supplementing with vitamin C. I have done a couple of the 24 hour saliva test and I was a bit higher in the evenings. My life is not stressful and I am generally a happy person, so I am hoping that when I get my TSH done around 1 and my T4 closer to the top of the range I will feel much better.
I had a hysterectomy about 15 years ago and I am also on estrogen. My levels were in the menopausal range, but I have those up now.
It's the T3 you need to concentrate on, not the TSH, and only in a limited way the FT4. T3 is the active hormone, needed by every single cell in your body.
As I said, your cortisol is not drastically low, and sounds like your adrenals have been healing since you started Thyroid Hormone replacement. But, take care of the adrenals, and they'll take care of you!
Thanks! I am hoping with adding T4, that my T3 will go up even more. I feel like 50 mcg was too much for now, so I went back to 25 mcg. I am wondering if I should have tried 37.5mcg instead. I have been anxious and weepy all day and I dropped it 6 day ago. In your opinion (knowing you are not a doctor or know my health history), should I stay the course with 25mcg and test in 6 weeks or try 37.5 mcg and test that in 6 weeks.
Difficult to say, but it might have been better to stick to the 50 mcg. 25 mcg T4 and 5 mcg T3 is a very tiny dose. You're obviously going to be under-medicated. And the reason you couldn't tolerate the levo is probably due to your low cortisol.
I am not sure why the endo started me on T3. I was quite surprised. I felt good on it at first. I was back to my hobbies. He added 25mcg of T4 and for the first several days could tell a positive difference, but fatigue was getting bad again. I tried 37.5mcg for just a few days, but then went to 50mcg. I would have stayed with the 50mcg, but having stomach pains, my hands were shaky, and I felt panicky. So, went back down to 25mcg and was okay for few days and then today I have been so anxious and weepy, which I have not been for quite some time.
I think the first few days on 50mcg and then the first few days back on 25mcg were decent. My body temperature is always low but was even more so after about a week back on 25mcg. Maybe try the dose in the middle, 37.5mcg. I just don't know. I seem to respond quickly to changes, but know I need to pick a dose and stay with it for a while.
Thanks for your help! I don't recognize myself a lot of days.
Yes, you absolutely do need to pick a dose and stay on it for six weeks before getting retested. Up to you which one you go for, but 25 mcg is obviously too low.
Then I will do 37.5mcg and hopefully that will be adequate for now. I would like to do 50 mcg, but that seems to be to much for my body at the moment.
Thank you for all you do to help people. It is a long and lonely road as I am sure you know. I can handle most symptoms, but the anxious feeling is one I don't tolerate well. I miss my calm and composed self.
When I first started the T3, I felt so good. I was cleaning, painting furniture, just being my normal self. It didn't last. My endo said something about he won't go higher than that. I hope that T4 will convert so that I can feel like I did on the first few weeks of T3. I don't understand these blanket statements by doctors when they don't even know how you are going to react to a medication.
I imagine the good feelings didn't last because you weren't taking enough. But endos have fixed ideas about how much you should take without taking personel differences between people into account. They are incapable of thinking outside the box, for the most part.
I agree! Maybe we should take a pair of children's shoes to our appointments and when they refuse to do something outside of the box, then hand them the shoes and tell them to try and put their foot in it.....one size does not fit all!
“I can handle most symptoms, but the anxious feeling is one I don't tolerate well. I miss my calm and composed self.”
And the same goes for me Trina64. I had never felt less like myself when I was at a very low ebb, waiting to “qualify” for a trial of Levo. Had never experienced anxiety in the sense of their being no obvious reason. Very hard to explain to anyone else too. I hope you soon feel you are recovering - we are all in this together.
No apologies necessary. Early days still for me. Have had 3 increases of Levo and beginning to finally feel the benefit emotionally. But not back to normal yet as I still can become anxious when there are plans to be out and about in unknown situations. Take care.
I don't have anything specifically that make me anxious. I know that it is a physical thing or at least that is what I keep telling myself. I seclude myself from others when it feels really bad, but that is because I don't want others to know I am out of sorts.
I have learned that I can't go up to fast. When I was diagnosed with hypothyroidism years ago, I didn't have any of the mental health issues. I was just very tired and my hair was falling out. I went on thyroid and then one day I noticed I felt better. I have had terrible medical care, so starting all over on the thyroid journey and it is nowhere like the first time. I definitely have to make changes in smaller increments than I did then. I don't know if it is age related or what.
So far, just the small increase I made this morning feels much better than yesterday, so hopefully I am zeroing in on what I need. I am tired and brain foggy, but at least I am not anxious.
Hey Trina, have a look at cortisol saliva test. I’ve been told cortisol has a circadian rhythm and the saliva test takes several data points that can provide a better picture.
Also TSH was high for someone on Combo. It looks like you’re under medicated, but sensitivity to thyroid hormones is not unique nor is sensitivity to the excipients. Have you brand fixed? It’s advisable on first scientific principles to reduce the variables and change one thing at a time and see the effect. So if you get a dose change and brand change at the same time it would be impossible to attribute the effect each variable had on you. Doing everything one step at a time is more controlled.
You do need to get thyroid hormones into to you but gently and ata pace you can cope with. And all your vitamins and minerals are optimal and not just in range?
Absolutely everything needs to be optimised so your metabolism works efficiently. I’m going to tag you into a YouTube video about hypothyroidism that might help. Has some good insights into how everything works. I’m on mono therapy and doing ok so treatment regimes differ but the issues are common. 😊👍
The ones that were checked were at a decent range. My D3 was lower than I like, so I increased that. My B12 was at the top. My Ferritin was about middle of range. I am not sure how to increase that. I eat lots of high iron foods. Potassium was well in the range.
I just started on the T4 4 weeks ago, so I am hoping that as I titrate up, I will begin to feel more like myself. What I found odd is that after 4 weeks on T3, my TSH actually went up and not down.
Hi Trina - if you do a cortisol test, don't do the Medichecks one like I did !It turns out it isn't very useful as proper ranges not given (just the 'guess your own level' <> more than/ less than type ones) and doesn't include DHEA.
Reading this I think cortisol is really important for you to know over a full day. 🌻
Thank you everyone for all your input in helping me feel better. I appreciate that you took the time to respond.
I decided to take 37.5mcg and see if that moves me forward. The first 3 days were actually pretty good. Today I am jittery and can feel my nerves jumping around.
I am less fatigued and brain fog is better, Something thing I noticed yesterday is that things are "crisper" to look at and I needed to reduce my reading glasses strength. I was trying to read something and it was bleary, so i bought a lower strength and then I could read it. The only thing I can contribute it to was starting thyroid replacement. I am also not weepy.
Is the jittery and nerve jumping feeling just part of my body getting used to it and/or the healing process? I still have the early morning stuff in my OP. Sorry for needing the hand holding.
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