I had a bad reaction to my first experience with meds and am looking for some help. Earlier this month, I started on 25 mcg of generic levothyroxine after convincing my doctor to try treatment. Here were my labs at the time:
TSH: 4.53 (.4 - 4.50)
FT4: 1.1 (0.8 - 1.8)
T3: 79 (76 - 181)
For the first week, I felt no difference. Then I started to notice a strange bitter/metallic taste in my mouth that lasted all day. I could tell it came after taking the pill. By the 8th or 9th day, the bad reaction started. I felt achy, fatigued, flushed, almost like when you have the flu, but I had no fever (though my temp was a little higher than normal). I also had diarrhea, a burning feeling in my arms, some insomnia, and worst of all, anxiety like never had before. At this point, I stopped taking the levo.
After stopping, the symptoms continued for days. The anxiety was the scariest part. I was basically bed ridden, unable to get up or do anything, the thought of leaving my house or even holding a conversation seemed unfathomable. I wasn't able to relax, and I don't know how else to describe it besides I felt like I wanted to crawl out of my skin. I was terrified for my life, even though I had no clinical symptoms of an emergency. Anyway, after about 5 days I started to feel normal again. I know the half life of levo is long. I've read some other posters reporting a bitter taste from generic levo. Also have read others have had issues with anxiety on it as well.
Before I started taking it, my doctor was worried about overmedicating and warned me of those symptoms. She means well, but I can tell she is not super educated about thyroid issues, so I'm not sure how much help she will be to me going forward. I have a relative who is an MD and is knowledgeable about all this to some extent and is willing to get me samples of Nature Throid or Tirosint to try.
I'm now back to feeling like my old hypo self, which is not pleasant either, but vastly preferable to that experience on levo. My doctor thinks I am really sensitive to hormones. I know I'll need to do something about my thyroid levels, especially if TTC in the future, but I'm terrified of starting meds again. Has anyone had a similar experience with levo and then did better on a different kind of med?
Thanks so much!
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cam92
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You need replacement thyroid. Levo didn't work for me, because, like you they started me on 25 and then 50 after 2 months then 75 eventually got to 125 but by that time I'd had to give up work. Levo either works or doesn't.
25 is nothing. Your nasty symptoms were Not a reaction to levo. Go back and start again the sooner you do 2 months of 25 the sooner you can have 50. You need a good multivitamin with D3 and B12 in it. Don't take the vitamin at the same time as your levo because calcium (if it's in your vitamin) will interfere with Levo's work.
There is no alternative to Levo on the NHS
If you do a year of increasing levo and your FT3 doesn't come up you may need to take a T3 medication instead but it's really hard to get and many patients have to buy it themselves.
Honestly 2 weeks of 25 is not long enough to give up on the one medication you can get for free.
I think there's a school of thought that the 25 starter dose can stop your thyroid working so that could be the cause of the symptoms..? greygoose ? Perhaps you need more Levo not less. That's been my experience.
I don't know about the metallic taste - I have experienced that from time to time, but don't know what caused it - but I think your symptoms were hypo symptoms.
Taking 25 mcg will be enought to stop your thyroid's natural production, but not enough to replace it. Hence, you have a reduction in hormone, not an increase - you become more hypo instead of less.
I would recommend you start levo again, but on 50 mcg this time.
Do not take a multi-vit. There are all sorts of reasons why multis are bad, but mainly because it will contain things you just don't need, and could be dangerous, like copper, iodine and calcium. Much, much better to take just what you need in individual pills.
Thanks so much for the replies! This is what confuses me the most. I know from this forum that starting on too low of a dose can cause a worsening of symptoms, but what I experienced was totally different than my normal hypo symptoms. They seemed to align more with being overmedicated/hyper. If I was on too low of a dose, which stopped my thyroid and made hypo worse, I'd expect to feel an exacerbation of my normal symptoms. This is what makes it hard to know if I need to stop the meds or increase them!
Yes, it can be very hard to know, because so many hypo symptoms are also hyper symptoms. Which is why we need labs to confirm. To be symptom-free, we need to be on exactly the right dose. And it would be very rare for someone to find 25 mcg the right dose.
As to the symptoms being different to the ones you had before levo, that doesn't mean a thing. It often happens that starting levo starts off a string of symptoms we didn't have before.
Unlike other posters I would say that you could’ve had a bad reaction to levothyroxine, it’s not the drug itself it’s the change in thyroid hormone balance… It takes awhile to settle down and it can have adverse side-effects such as affecting sex hormone binding globulin or simply disturbing the thyroid balance that you had even though you were hypothyroid. And anyone who says 25 µg of levothyroxine is nothing is only speaking about their own personal experience or is taking far too much of an academic theoretical view on it. Personally 25 µg of levothyroxine can have a big affect for me particularly when it gets nearer to an optimal dose plus or minus 25 makes a massive difference to me within days. If I were you I would split the levothyroxine into half; start off a few days or even a few weeks with half of it and then take half at night and half in the morning and see how you get on. Your free T3 levels are probably a bit more suspect than your free T4 levels and it may be that you are a poor converter and need some T3 which would avoid the L-thyroxine affect but on the other hand is even more of dose sensitive and you would need a tiny tiny amount, say 1-2 mcg in split dose With very gradual introduction. Unfortunately it seems you have a well-meaning helpful GP who doesn’t know that much about it and I suspect if you are referred to an endocrinologist they will take a similar view that 25 µg of levothyroxine is nothing! We are all individual with an individual response and some of us are indeed super sensitive to thyroid hormone…
Thanks so much! I think you may be right about building up to the full dose slowly. I also kind of suspected poor conversion, based on the low T3. My relative who is a GP said many women in our family with Hashimoto's are poor converters. Luckily she may be able to get me NDT, so I may try that instead.
As others have said, starting on too low a dose often causes problems
Standard starter dose of levothyroxine is 50mcg, unless over 60 years old
Important that vitamin D, folate, ferritin and B12 are tested. Getting these optimal can help tolerate levothyroxine better
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels and thyroid antibodies
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
Teva, Aristo and Glenmark are the only lactose free tablets
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap. Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Bloods should be retested 6-8 weeks after each dose increase
Dose needs increasing as fast as tolerated
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Very helpful--thank you! I was on a generic levothyroxine--not sure which generic. My vitamin D and ferritin/iron were suboptimal when starting. I read somewhere that low iron is a leading cause of anxiety when on T4 replacement. I may just end up ordering my own labs now, so thanks for the links!
Hi, I have been on levothyroxine for over 30 years. I did get a metallic taste in my mouth which started to become more apparent a few years ago, so I spoke ...to my dentist...yes, my dentist, and I had all of my mercury fillings changed for resin.. no more metallic taste. Not certain if this actually helped any of my symptoms, as it was some time ago, but it definitely felt better.
If you are female, did they check your female hormone levels, estrogen dominance can cause a high range TSH.
Like you i felt the same when i first started levothyroxine, my GP prescribed some antipsychotics but they just made me want to eat and sleep all day, even getting up and walking was a struggle on them so i decided not to take.
An alternative health practioner recomended sea kelp for normal thyroid function so you could try that and see if it helps any.
Also if you do end up taking the levothyroxine adding T3 helps alot with the mental state but it is extremely hard to get prescribed they much rather give antipsychotics.
Do you feel like you are being pulled into a vortex and have no clarity of mind? that's how i felt. I also felt like i was being pursued all the time which made shopping very difficult. My yoga instructor said that i looked more alert on levothyroxine so maybe before i just didn't notice the things i noticed on levothyroxine. Do you feel you are noticed by others more now?
Omg your post could be mine! And your labs mirror mine! Only difference is I have been on Naturethroid for two years and have felt great but since it was recalled my doctor switched me directly to Synthroid 100 mg and I have been a wreck ever since. Anxiety, constipation, restless, out of body feeling, etc...and I used that for 7 days, than tried Tirosint 50 mg for 5 days and no better!!! I absolutely think it’s the medicine no matter what anyone says. I HAVE NEVER FELT LIKE THIS BEFORE!!! I want to maybe try Armour but I too am now scared and still don’t feel myself...I stopped tirosint 3 days ago. Have your side effects subsided? How long did they last?
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