Hi, I've just newly started a trial of Levo (50mg a day) and it SEEMS to be giving me migraines. I started antihistamines at the same time and thought they were the culprit so stopped them again after three days, but the migraines have persisted. I'm also getting insomnia and quite severe fatigue. Is this normal? And if it is, does it settle down again? Because I don't think I can stand much more of this pain. It's very debilitating. (I have the full thing: nausea, sensitivity to light and sound, a sensation that my eyeballs are bruised and lined with sandpaper, extreme lethargy and tiredness.)
For the record, I am also on Carbamazepine (300mg) and it is known to not play well with others, especially for me. There is a warning on the Levo packet insert about it, but as far as I know, all it means is the Carbamazepine will make my body metabolise the Levo faster than normal. This may well be what's causing the headaches, but I can't be sure.
Anyone had any experience of this, and have any advice as to whether it's likely to settle down again? Is it possible I'm on too high a starting dose?
By the by, rather amusingly, the Levo also seems to be giving me spots. I haven't had spots since I was about 14, and I didn't really get them then. Ah, it's all fun and games.....
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Chancery
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Chancery, starting thyroid replacement and dose increases can trigger headaches so perhaps Levothyroxine has triggered the migraine. Headaches often subside 7-10 days after starting Levothyroxine and about the same after a dose increase.
Acne may be due to metabolic changes happening or perhaps a reaction to one of the fillers in the Levothyroxine. When you get your next prescription ask the pharmacist for an alternative make, there is Mercury Pharma 50mcg, Actavis (aka Almus) 50mg, and Wockhardt 25mcg.
Ah thanks, Clutter, that's good news. Maybe if I just stick with it, it will settle down again. I'll try and soldier on though ten days of it and, hopefully, I'll see an improvement. If not, well, I don't know what I can do. I believe it's Levo or nothing, unless you want to self-medicate?
But also good to know there are alternative brands. That might just make a difference, to both the headaches and the sudden return to youth!
Chancery, I had spots all my life including post-menopause but I can count on one hand the number of spots I've had post-thyroidectomy. I got quite overexcited when the first appeared and thought Hey! I'm getting back to normal
Hi Chancery, are you taking them at the same time? I understand (from here) that it is better to leave some time (4 hours?) between different medications.
Yes, I am, Apples, roughly. I take the Levo when I get up, asap, before breakfast, then I wash up, make breakfast, eat it and then take Carbamazepine. I would guess there's about an hour between them, tops. It's the best I can do, because I'm supposed to take Levo before breakfast, according to the packet, and I have to take Carbamazepine in the morning, otherwise the shakes will start up. But I could try leaving the Carbamazepine till lunch time and see what happens! I suppose I'd get used to it in time...
Chancery, you can take Levothyroxine any time of day, 1 hour before or two hours after food and drink, 2 hours away from other meds/supps and 4 hours away from iron, calcium, vitD and oestrogen.
Have you stopped vitD and has it made any difference to the pet rash?
Really, Clutter? Not according to my Mercury Pharma box insert. I quote, "Swallow the tablets with a glass of water, preferably before breakfast."
Now you've conflicted me. On one side I have the drug company, who SHOULD know what they're talking about, and on the other side I have you, whose opinion I respect above all others (except maybe Helvella's). What are you doing to me, Clutter!????
P.S. No, still taking my Vit D. I'm going to stick with it till I've had a blood test to check how high it is - that and my calcium - and then I'll stop it if I'm okay. Hopefully I'll be nothing worse, like too high...
Unfortunately Patient Information Leaflets are not exactly the finest examples of information distribution. They all too often end up being the minimum that companies can get away with.
Over the past decade or two, there have been numerous papers which have reported interactions between food and drink, medicines and supplements and thyroid hormones, particularly levothyroxine. Few have made any impact on PILs here or abroad.
One example showed that iron interacts seriously, forming a stable purple complex which simply passes through the gut. The advice for that was four hours gap because the iron can catch up with levothyroxine that has not yet been absorbed (or vice versa).
I do think there is an argument that consistency is more important than absolute gaps. The problem is that it is very difficult to be sure we maintain our regime over long periods which might include summer and winter, holiday and work, wellness (at least relative!) and sickness, etc.
I take my levothyroxine at bed-time, as do quite a number of people here. Seems to work for me - I usually sleep well, definitely better than before diagnosis.
Ah, I say the magic name and up you pop! But thank you very much for that; I feel more confident disregarding the Wisdom of Great God Pharma now.
I think I will stick with taking it before breakfast, as 'prescibed' but I'll shift my Carbamazepine instead. I reckon my body's so stable on that front I can risk taking it at lunch time instead. It means I'll have to shunt all the other doses forwards, and put up with DTs for a week or so, but I think I'll cope.
I confess I wasn't happy taking them together, and the migraines are coming on after I take the post-breakfast Carbamazepine, so my money's on it making the Levo (taken an hour beforehand) go through the liver in double-quick time, hence the bad head (and nausea; very severe today). If there's a big enough gap between the two then I'll at least be able to see if it's the Levo itself or adding the Carbamazepine to the Levo that's doing the damage.
P.S. I take a multi-vitamin containing iron after breakfast too, so who knows, maybe there is a bit of a problem occurring there too. And a probiotic, but I can't see that one being much of a reactor!
I've taken due note, Faith. thanks. If my new regime of separating it by 4 hours in the morning doesn't work, I'll do the opposite and shunt all the Carbamazepine doses back the way and take only Levo at bedtime. Surely something has to work! Soon, preferably!
What you need to remember , is the body has to be converting properly..the t4 to active t3, or you get no benefit from the levo. That is why many with autoimmune issues, inflammation, issues with iron and cortisol and 20 other reasons, just don't do well on levo or levo without added t3.
Got it. I'll keep it in mind, once all this has - hopefully - settled down. For now I'd just like rid of the awful side effects, but I'll stay optimistic and hope it's all going to come right in the wash!
Hi Chancery, I had this when I tried Levo 50mcg a few months ago. For me the headache and insomnia only lasted about a week and then I didn't have any more headaches whilst on it after that. It might happen each time you up the dose though, like Clutter said. I just wanted to let you know that there are others like you who have had this, but that it wasn't long lasting. Hopefully it will be the same for you.
Thanks Lizbie, that's very comforting to know. There's hope for it yet!
Hi Chancery,
Poor you, having waited so long for Levo and now this!
I think you have answered your own question.
I get achey scratchy eyeballs when I'm undermedicated but yours are probably due to rapidly changing hormone levels. Give it time and levels will hopefully balance out.
Thanks, Flower. But I have to say so far it's been underwhelming. I certainly haven't been filled with energy (I wish) and getting so 'high' on it my doc has to cut me off. Looks like he could have saved his breath with the scaremongering!
It could be the levo itself but if it was a allergic reaction you would expect other symptoms. Of course if you have any doubts you should contact your doctor.
My experience is that it isn't the levo itself BUT the hormones that are fluctuating. If I change my dose I feel drugged for 1 week. Exhausted, headaches with sometimes migraines, feeling dizzy, if I would tell you all my symptoms it would be a long list. The good news is it will slowly settle down and then I have to wait a couple of weeks to feel if it does something and to get my blood tested.
It is a rollercoaster if you change the dose of levo, it should get better.
Ah, thank you, Flower, good to know feeling drugged and exhausted is normal, because those are my major symptoms. I've gone from my normal (okayish) to super tired, drowsy (falling asleep, even in the mornings after breakfast) and with this infernal headache boring away 24/7 (of course, painkillers don't touch it).
I think I'm on day nine or ten. If it hasn't improved any by the time a fortnight's up I'll have to speak to the doc, maybe try switching brands, just in case there's something in this one that doesn't agree with me.
I'm almost a year on levo now and still working on finding the right dose. I keep a sort of diary for this so I know exactly how I felt after a dose increasement. That's why I know it will costs me about one week feeling drugged and can barely function.
I'm sorry you're feeling this way, just like you pain killers don't work for me so I try to listen to my body.
I hope you will feel better soon and I think it is a good idea to contact a doctor if it keeps going like this.
Yep, will do. After I suffered a six week migraine on Lamotrigine, I now have a short fuse for tolerating migraines. I know I get them with drugs and there's no point in putting up with them, because they generally don't improve. But I'm being patient and I will sit this out for a fortnight in the hopes that it's only temporary, because it does seem quite common, by all accounts on here, but after that, it's on borrowed time!
A six week migraine sounds like hell. My migraines have become much less since I'm on levo (but not when I change the dose or my hormone levels keep fluctuating, then I keep having migraines). There is a connection between hypothyroidism and migraines, I believe it has something to do with the blood circulation that isn't optimal because of the hypothyroidism.
The levo is supposed to help you and not to make you ill, there is a time you need to get adjusted but after that it should make things better. Hang in there and don't wait too long to contact a doctor, maybe another brand suits you better.
Got horrendous migraines every day with aura and blind spot.Six weeks of migraines is not right,please go back to dr.Never again will I take levethyroxine,it ruined six months of my life.Good luck.
I have been on levethyroxine 50 for six months.Nightmare.Migraine every day,anxious,weight gain,thought I was going mad.Finally a lovely lady dr.listened to me,and has taken me off of it.Have huge sympthay for you,also had memory loss,and was told by first g.p.that I had to take it for life.I could not go through that hell again.Use your voice,and I hope you get the help you need.
No need to worry, Fivethirty, this post is two years old! Long since come off Carbamazepine and Levo so no conflict any more, but I thank you for your concern. Very sweet and much appreciated! X
Hi Geeeneh, yes I am. I'm on Oxcarbazepine and Nortryptiline, both for Trigeminal Neuralgia, which unfortunately came back (that's sadly normal) but at least not as badly. However, I no longer take any thyroid meds as it was the TN medications that were causing the thyroid disruption. It is possibly disrupting the thyroid again (I've just had bloods done to check for this) but, as yet, no need for medication. However, I do still have migraines from these damn meds - that's never gone away! They are manageable though, probably because I am on a very low dose. Through my use of a lot of different meds in recent years I've come to realise that there is hardly a drug on God's earth that DOESN'T give me migraines. Not great if you are faced with a compulsory situation of having to take medication! Truly the devil or the deep blue sea.
Thanks Chancery. I decided switching to ancient remedy few weeks ago from 75micro Levo, this left me really ill for almost two months. After weeks of hell, I decided to take 100micro of Levo, which subsided the body aches and pains. After my recent blood tests came back with low Vit. D, my GP asked me to add Vitamin D to my regimen. I then added 5000iu Vitamin D, 1000ug Vitamin B12, and 135mg Magnesium Citrate to my daily regimen. I started have massive migraine headache 24/7 after adding all these to my regimen. I believe one of these triggered the migraine or I was just doing too much. I stopped taking all except the Levo this weekend. Hopefully the migraine will go away for go.
The most likely culprit is Magnesium, Geeeneh - always aassuming it is one of the supplements that's caused the problem (that's the trouble with being alive; so many confounding factors from diet, lifestyle, medications etc!). I get 4-weekly B12 injections, which are very high and very effective and they never give me any problems, and I am a "chronic migraine sufferer" according to one of my neurologists. I've also used Vitamin D when mine was very low and I top it up in the winter and again, no headaches. But I have had problems with Magnesium in the past. I used to take it with B6 in the 80s and I got neurological issues with it (tingling in the finger-tips) which fortunately went away after I stopped them. It may have been the B6, of course, which you can overdose on. It might be worth your while to try dropping the magnesium and try the other two on their own. Or even try them all one at a time till you find the culprit?
Thanks Chancery, That’s exactly what my GP suggested but I was so desperate to get rid of the migraine, I decided to stop all vitamins and minerals. I’ll try the vitamin D and B6 again after my migraine subsided. I might have overdosed my self on vitamin D, so I’ll give myself couple of weeks to restart. I’m starting my T3 supplement today, hope it would help with the dizziness and weakness on my legs. Thank you so much for your replies.
I once made myself really ill as a teenager by taking a load of supplements at the same time as OTC painkillers. There was absolutely nothing weird or even high dose in them, so it just shows you how easily it can be done. I used to suffer from stomach migraines then, although I didn't know it at the time, so it's no stretch for you to trigger migraines by taking either the wrong dose, too high doses or too many things all at once!
My old doctor used to always say that people don't realise that anything can be toxic to you if you take it in too big a dose (this was after I had hospitalised myself with low blood sodium by drinking too much water during a UTI!) It's also just possible that you simply started too many things at once and you need to roll them in one at a time, as it were, to let your body adapt each time. Perhaps you're as sensitive to vitamins as I am to prescription drugs!
The very best of luck with your T3 and thyroid issues. I know from when I used to use this board regularly a lot people really struggle to get the right treatment for thyroid problems. Let's hope inspiration strikes you the right way! X
Thanks Chancery. Yes, I’m going to drop all vitamins for now and hopefully it'll go away for good. Day two on T3, I’m keeping my fingers crossed. Thank you so much for your input. Cheers
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Migraines 
Levothyroxine and Carbamazepine
Teva levothyroxine
Am I optimising Levothyroxine by it taking at the right time?
