I was diagnosed with Hashimoto's last year, after blood tests at different times found signs of hyperthyroidism and then hypothyroidism. GP started me on 50mcg Levothyroxine. It seemed to make me even more tired and depressed, so I stopped taking it after a month. A few months later, my TSH had gone from 5.6 to 11.2, so I very reluctantly started 50mcg Levothyroxine again. Been on it for almost a month and I think it has actually been even worse this time.
I have been struggling with depression and anxiety for a long time. However, I was starting to reach a point where it felt like I was coping; that I could start making plans for the future. If I felt down, I was sometimes able to talk myself into feeling better. Now ever since starting the Levo (for the 2nd time), I've been feeling like a crazy person. I can't sleep properly; my anxiety levels are through the roof; and I can't get thoughts of wanting to die out of my mind. Physically, I feel rundown and tired. Put all plans on hold, because I just can't function like this.
My medical history is complicated. I have Crohn's, and it was a new GI who actually picked up on my 'subclinical hypothyroidism' in 2011; he said my antibodies were through the roof. However, nothing was done about it: to be honest, I had bigger fish to fry with the Crohn's. Lost that particular battle and ended up electing to get my colon removed in Feb 2013. I was on steroids for a long time in total: about 2 years, some of that on high doses. I've been off steroids since last June, but am worried that my adrenal glands may still be suppressed and perhaps making the side-effects of the Levo worse.
I have no way of knowing. My adrenal glands should probably be back to normal by now, but I'm just guessing. I'm also just taking medicine blindly, hoping it will work, and feeling worse than ever.
I guess my question is has Levo made anyone else feel miles worse and if so what did you do about it? I can't wait this out too much longer; I will if somebody promised me they felt suicidal for 8 weeks and then perked up at the 2-month mark, but otherwise: no. I want to change meds, but to what I don't quite know. I'm not in a position where I can demand full thyroid panels, dessicated thryoid extract, or whatever; I have a conservative GP and I cannot afford to go private. UK, btw, female. Sorry for the length of the post (I always end up writing a wall of text) and reading this far, folks.
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unlucky777
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Hi there, I can honestly say that T4 made my moods very low, to the point that ending it all crossed my mind several times because I felt that low. I have tried T4 a couple of times and I have realised it really alters my mood. I took myself off it and am taking T3 mood much brighter, I still have a long way to go but I do not feel those terrible dark thoughts that entered my mind and ones that I had never previously had prior to taking to T4 or since stopping...So my experience is yes it can alter your mood and I will never touch the stuff again...D x
I just want to add after seeing the other 2 replies, that I worked with my GP to get the dosing right slowly increasing the T4, with regular blood tests till I got up to 175mg, so it is just not for all of us BUT you could be one of the lucky ones that once you increase you will find the dose you need...Wish it had been that simple for me! :-(((
A very warm welcome to you and I'm sorry you're feeling so down and ill. It must be especially exhausting and must feel unfair after all you've already gone through.
Sometimes when you're on a low dose of levo - too low for you to recover on - it does nothing more than shut off your thyroid output, so it can make you feel worse.
Has your gp tested your t3 or t4? It would be good to have those test results here with ranges.
In light of how ill you feel it might be worth putting your doc on red alert to see if there's any way anything can be speeded up a little (a blood test after six weeks rather than three months).
The alternative is to have a set of private tests just to see what's up, but it does take about 6ish weeks for the levo to level out, so it would be best to wait until you'd been on it long enough. That way you get all the necessary tests done at once, you don't have to argue with your gp and you can see if you need more t3 or t4 straight away.
I hope others will be along to add to the discussion because a lot of people have this reaction to levo and perhaps they will have some advice.
Poor you, sounds like you've had a rotten time. {{{hugs}}
My immediate thought is that it isn't the levo that's making you feel so low. It's the fact you're not on enough of it. 50mcg is only a starting dose and you almost certainly need an increased dose.
Have you had any blood tests recently (thyroid ones?)
I agree with LilyMay that the symptoms you're having suggest under medication. Have you TFT that you can post with ref ranges?
The brain is a big feeder of T3 and is probably stealing as much as your 50mcg can convert, but not finding enough is causing anxious and depressed feelings.
Be very clear with your GP that it is taking insufficient Levo that is causing you depression and anxiety and that you want it increased or an alternative like T3 prescribed and will not consider antidepressants until your levothyroxine is optimised.
Thyroid Panel should be run every 6-8 weeks after a dose change until stable. It is perfectly possible to observe changes by testing every 10-14 days. My own GP did this during December and January.
You've had so much going on that your vitamins may be depleted. Have you had ferritin, vitaminD, B12 and folate tested recently? Deficiencies and low in range can make you very unwell. Low iron makes it hard to properly absorbe thyroxine and B12 can be deficient after GA especially if it contained nitrous oxide.
Okay, dug out an old letter from my GI... It's dated 28/6/11, and says that my anti-TPO is >1300, a 'low normal' T4 of 13 and TSH of 5.68. I have even less record of my GP's test results, but according to an old post of mine, on 13/6/13 I had a T4 of 25 and T3 of 9. Think the TSH was 0.1, not sure, 'cos I hadn't written it down for some reason. Jump two months to the 3/9/13, and my T4 was 9.1 and TSH was 5.57 (no T3 result). Finally, on 13/2/14 my TSH was 11.2 (no T4 or T3, 'cos my GP didn't think measuring them was necessary).
Sorry if all that is a bit confusing. The T3 and T4 don't really mean anything to me; I know that T4 is inactive and converted into active T3, but don't know what their numbers should be. However, I do know that the normal range of TSH is 0.3 to 3 (or 5, depending on the laboratory).
I must admit I'm wanting to increase my Levothyroxine dose about as much as I want a hole in the head If I were to try doing that, then roughly how long it would take to see an improvement? And should I go up to 75mcg or 100mcg?
I have an appointment with my GP on the 8th April (think it's then...), so I will bug him a full thyroid workup, instead of just the TSH. By that time I should have been on the Levothyroxine a full 6 weeks.
@Clutter - Last time I had my ferritin and haemoglobin tested, they were both in normal range. I used to have dreadful anaemia with the Crohn's (and probably the bone-marrow suppressing meds as well...), which required iron transfusions and, one time, a blood transfusion. But ever since surgery and coming off the immunesuppressants, my iron levels seem to have finally stabilised. IIRC, ferritin was 65 and haemoglobin was 14 a few months ago.
B12 was in the low 300s. Don't think my Vit D has ever been tested, but it was something else I was thinking of asking my GP to do.
I hope my GP isn't against doing regular blood tests every 6 weeks for a while, but 3 months feels way too long to wait at the moment. Heck, I'd have them every week with full lab printouts if I could; I've become such a worrier
Phew. Serious brain fog today; in a way I'd rather have that than the anxiety (feels anxiety rise... uh-oh), but I feel like I'm in a complete stupor. Took me forever to write this post. Anyway, again thanks for your replies, folks: appreciated.
Hello. I'm a bit late coming in due to ,yes through the roof anxiety (9 years), It is the worst thing. Heart pounding and feeling like adrenaline surging around body, sleep problems, chronic tiredness but not able to relax/nap, and thoughts of dying all the time ( which is not surprising when you have anxiety so bad.) I am too taking levothyroxine 50mcg for last 7 years after seeing doc privately who said I had high antibodies. Since hitting menopause anxiety almost constant. I think the levo can make you feel worse and when my doctor told me to up the dose I was too scared because of pounding heart. Listening to others it seems that the adrenal glands may need to be helped first. I'm afraid I have other autoimmune probs too and was put on benzos to which now I'm addicted ( read these can intefere with thyroid meds, and also tolerance to benzos keep anxiety going), so avoid them. Anxiety can also stop meds working,it's a vicious circle. So yes I do tend to blame levo, tho had anxiety before I ever took it . I also stopped taking levo for a while and then went back on. Keep going, I am starting all over to try and get some relief, but so hard when you can't get doc to test regularly and hospital will not do T3. Don't give up.
I have been on thyroxine for about 6 weeks, all of a sudden depression has hit! I cannot handle it! I am not taking it tomorrow morning and also going to see what my blood work shows! I have hypothyrodism! Any suggestions! I also will cal my Doctor in the morning! Thank You!
HI, I have been feeling the exact same thing. Can you please please let me know what worked for you in the end? How are you feeling now. I was diagnosed with postnatal depression and it was okay after I was put on anti-depressants and after 6 months I was diagnosed with hypothyroid and started taking levothyroxin and soon after like 10 days , depression is hit me again. I dont want to go down the same place. Can you reply as in what worked for you at the end.
I have just discovered this website, and thank goodness I did! I have been taking Levothyroxine for the past 5 years following Radioiodine treatment for hypothyroidism. Initially prescribed 50mg Levo, doctor increased this to 75mg two years ago. I have had four blood tests so far this year as I felt I was hypothyroidal again, but nothing from my doctor re: increase dosage so obviously he felt all was OK with the Levo dose at 75mg. As the original poster stated, I have also had serious trouble getting off to sleep, really bad anxiety and almost panic as soon as I try to drop-off to sleep, constant thoughts of death/dying, and for the past fortnight waking up feeling like wanting to end it all. These thoughts tend to drop off slightly during waking hours, but as soon as I try to get off to sleep at night back comes the anxiety/panic/suicidal thoughts and feeling generally very, very depressed. This is worse as I live alone and have nobody around to talk to about how I feel. This morning I thought I'd just try increasing my Levo by 25mg and "bingo" ... a couple of hours later I started to feel much lighter in mood, so hopefully I may get relief from the morbid thoughts, anxiety, sleeplessness and general hell of the past weeks by increasing the dose.
hi dont know if u are still posting on here.. just wanted to know if the anxiety/depression/insomnia went completely when u increased your dose? and how long did it take for u to feel normal again?
I feel just like you on levothroxine I have been referred to a thyroid specialist(endocrinologist)it is like a poison push to c a specialist there are alternatives.good luck
I hear ya! I didn't have fatigue and depression as bad as I do now after starting Levothyroxene 3 weeks ago. No get up & go...and flat lined. Like the living dead. I asked the doctor to switch me to synthroid I heard that can make a difference. How are u doing now? Any better?
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