Reading horrible things about Levo online...what is your experience?

Posted , 7 users are following.

I just started 112 mcg 2 days ago, and what I am reading online is really scary! People are saying that they get acne, gain 50 pounds in 2 months, have body aches and pains, hair falling out in chunks, muscle cramps, etc.....I am actually reading very few positive things about it....What is your experience?

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  • Posted

    I think the first step is to read, read and read some more about hypothyroidism then you will know what is causing your problems should you have any. It is very common to start low with Levo (or synthroid) and then increase your dose slowly should you experience negative symptoms. You must also be at least an equal in knowledge with your doctor - this is not difficult. 

    The first stage of dosing hypothyroidism is trial and error, it is unlikely that your first dose will be your optimum dose. One strategy is to increase your dose slowly until you feel well. Another is to go much higher, probably go a little hyper and then go in the middle of the low and high doses. 

    But do read and study, you will soon be stable if you are in control of your own dose. You may get frustrated with your doctor, many of us do, I am on my fourth doctor (although one retired and one just left - not because of me though!)

    I have felt many of the symptoms you describe, but I have adjusted my dose or changed my medication (either brand or type) until I am now OK.

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  • Posted

    The Internet can be a scary place to read about meds and illness!

    Usually people who have bad experiences with Levo haven't been on the right dose. My mum has taken it for 25 years with no issues at all.

    I have taken it for 8 years and have always suffered with chronic fatigue and my hair has thinned slightly (it's never noticeably fallen out but gradually thinned and I put this down to the face its not working properly for me). Weight/acne hasn't been an issue either.

    If you find you do suffer any side effects (from people I know in real life they are usually fairly minor), there is another option. I am currently making the transition of taking Levo (in a smaller amount) with liothyronine which is a T3 medication. Some people suffer side effects with Levo because their body doesn't convert it to T3 as it should do.

    And another word of advice- thyroid meds can often take weeks rather than days to see the effects you need (especially if you change dose), so patience is key!

    Whilst this forum can be great in terms of support and fairly instant advice, the thyroid uk website is the most credible and accurate source of information

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  • Posted

    Hi again Rhwittman:

    All meds have side effects and many of us have tried Levo, NDT, and Cytomel.  The pharmaceutical companies list everything as they have to, under FDA regulations.  Like any illness and treatment they list a million side effects. It is important to  take the replacement hormone to avoid worse symptoms and so our body will work correctly.

    The thyroid gland is a multi-task gland and we can't transplant another persons gland, so we must replace the hormone by way of tablets.  I have had Hashimoto's for most of my life now, and I do not have any horrible side effects.

    My sister is on Levo (synthroid) and I am on Cytomel  since I can't convert T4. My sister leads a busy life and had twins and likes to go bowling.  She has not had any bad side effects.   If you are in the USA you can contact the American Thyroid Foundation for information also.

    I guess I can say a positive thing about this disease,  is we live in good times where we can treat this disease. So we have it much better than people 100 years ago had it!  We can live a good & long life!

    Be positive and take your medication and in a month or so the doctor will order new blood work and you will see he TSH level come down.  Many people get this disease and live active lives.

    Any  questions just ask, this is a wonderful support group with people who have been there.



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  • Posted

    Hi rhwittman

    I was recently diagnosed with hypothyroidism and like you went on Internet to.check on levothyroxin as I wasn't feeling well after taking it. Got myself into.a.right panic But have calmed down read more on thyroid UK had lots of support from being here. Working with my Dr to see what is going on with my side affects. I have a friend hypo never has any problems with Levo seems it works for lots of people. We're all different not everyone responds of medications and those will be on Internet. if you're taking it feel.ok and no.side affects and blood good I wouldn't worry.

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  • Posted

    Don't panic!

    The leaflet lists 69 side effects, but they may be nothing to do with the drug, as even if one person experiences anything during drugs trials, they have to report it.  

    How your condition is handled also depends on which country you live in.

    Keep going back to your doctor until you are happy, and it might be a good idea to ask a pharmacist for advice.

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    • Posted

      Gcowboy, asking  pharmacist is an excellent idea!

      Pharmacists have a far greater inflow of data than doctors, they are more likely to know what works and what doesn't.

      A pharmacist told me once, "You know they sent you generic this time instead of brand." I had no idea what they were talking about and didn't think she knew much about it. Boy was I wrong. She knew that generic was no good - how, I do not know for sure, but probably she was being told twice an hour that, "That junk doesn't work!" 

      So, yes, do listen to your pharmacist.

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  • Posted

    Thank you all so much for your advice. I guess I will stop reading and just see what happens!
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  • Posted

    Hi, to put this into perspective, you need to know that levothyroxine works for the majority of people - and they are busy getting on with their lives, not on this site searching for answers! So I shouldn't worry about it (yet). My view is that people for whom it doesn't work have additional things wrong with their thyroid system e.g. problems converting T3 to T4, or with their thyroid receptor cells being able to receive T3.
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