Levothyroxine prescribed- How long did it take for you to feel better and what did you notice first?

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bametels
bametels Posts: 950 Member
Had a bout of thyroiditis 15 years ago and was warned that I was at risk of permanent hypothyroidism later in life. Well as my doctor put it yesterday, my thryroid has basically "crapped out." LOL She has started me on a "baby dose" of levothyroxine (50 mcg) to start and wants me to see her again in 6 weeks. She wants to get my TSH to 2.0 or lower, and will monitor my symptoms rather than strictly the numbers to drive how high a dose I take.

I wondering how long it took for you start to feel better and what you noticed first?

Also, wondering whether you've found a difference between taking this drug in the a.m. (as normally prescribed) or at night (which recent studies are suggesting is beneficial). She has me taking it at night.

Thanks in advance for your insights.
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Replies

  • editorgrrl
    editorgrrl Posts: 7,060 Member
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    Synthroid should be taken on an empty stomach (2 hours after eating, and 4 hours after taking any supplements) with a full glass of water. Wait 30–60 minutes before eating or drinking anything but water. Morning or night is entirely a matter of personal preference.

    It took two years of ever-increasing doses before my thyroid levels ever entered the "normal" range, but I can't remember when I started feeling better. And I'm sure it's different for everyone.
  • T1DCarnivoreRunner
    T1DCarnivoreRunner Posts: 11,502 Member
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    I never felt like I had a problem with my thyroid, but blood tests showed Hashimoto's. I get regular testing since I have type 1 diabetes and am at high risk for Hashi's. I've been on levothyroxine for more than a decade and can't say there is a specific time when I felt better or worse as a result of thyroid medication.
  • editorgrrl
    editorgrrl Posts: 7,060 Member
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    I have Hashi's, and thyroid meds (Synthroid & Cytomel) changed my life. But the brain fog was so bad I can't remember when I started to feel better.

    My symptoms included goiter, brain fog, fatigue, depression, anxiety, tremor, palpitations, weight loss, weight gain, sweating, chills, diarrhea, constipation…

    Synthroid has had zero impact on my goiter or my weight. I still kept gaining until I learned to log everything I eat & drink accurately & honestly. Logging was a wake-up call. Logging works.
  • indianarose2
    indianarose2 Posts: 469 Member
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    I felt gradually better and better almost immediately. I was severely hypo. It took a LONG while to seldom to get to optimal however. Get regular checkups. Don't let your doc put you off for more than 8 wks at a time to check on improving your levels. And it does sound like you've got a good provider so congratulations!
  • lindsey1979
    lindsey1979 Posts: 2,395 Member
    edited July 2015
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    I take NDT rather than the synthetics, but I started to feel better pretty quickly as well. It took me 2 months to get up to my full dose (130) and I started on 16.25 and increased 16.25 each week until I hit the 130 which is a good dose for me.

    I started noticing differences in 2-3 weeks. But, I also started a bunch of other supps at the same time. For me, that was primarily DHEA, Vitamin D and magnesium. So I don't know if those first effects were from just the thyroid or also from eliminating the deficiencies in DHEA, Vitamin D and magnesium. By 2 months, it was a night and day difference.

    The things I noticed first was the fatigue starting to life and my hands and feet weren't freezing all the time.
  • CSARdiver
    CSARdiver Posts: 6,252 Member
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    From reviewing metabolic uptake it will take ~48hrs to 7 days for thyroid hormones to take effect where you will notice an impact. I had a total thyroidectomy after cancer diagnosis. From personal experience if I missed a dose I would feel it 5-7 days later and when I was experimenting with dosing it would take at least a week for me to notice. This is with Synthroid. I tried a generic and experienced brain fog and dizziness, so went back to the branded version with no adverse events.

    I alternate daily with 175/200 mcg and take it first thing in the morning and don't drink anything for at least 30 mins.
  • bametels
    bametels Posts: 950 Member
    edited July 2015
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    Thanks everyone for your responses. It's encouraging to know that I could be feeling some improvement fairly quickly.

    Lindsey1979 mentions supplements. Are other folks taking supplements too? If so, what have you found to be helpful? I was diagnosed with a Vitamin D deficiency last year so I've been taking a supplement for about a year and a half. I'm back in the normal range but can't attribute any improvements in my health to this. Although, if I wasn't taking it perhaps I would feel worse now.

    CSARdiver mentions problems with a generic. Did anyone else experience this? I'm trying to stop brain fog, dizziness, and a myriad of other problems ... don't want meds that create more :smile:

    My doc said if the levothyroxine doesn't work or if it causes problems we could try Synthroid but she is trying to be budget conscious. It's been a frustrating and expensive journey (as it was when I initially had the thyroiditis) to get a proper diagnosis and treatment.

    Editorgrrl - I agree with you on logging. I've lost 50 lbs. and maintained it for a year by eating more healthfully, increasing exercise, and logging. In the past few months, I suddenly started putting on a few pounds which seems to be primarily, if not all, water weight. I wake up with a puffy face every day, my lower legs and ankles are puffy, etc. Never had this problem until recently. My doc says it's a hypo symptom and the meds should help. I'm not expecting any miracle weight loss to occur by taking this medication.

    Thanks again.
  • editorgrrl
    editorgrrl Posts: 7,060 Member
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    bametels wrote: »
    @Lindsey1979 mentions supplements. Are other folks taking supplements too? If so, what have you found to be helpful? I was diagnosed with a Vitamin D deficiency last year so I've been taking a supplement for about a year and a half.

    After blood tests, I started taking iron, vitamin B12, and vitamin D. I also take calcium & a multivitamin.
  • bametels
    bametels Posts: 950 Member
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    One more thing - Would love to have some MFP friends dealing with thyroid issues. Let me know if you would welcome a friend request!
  • bametels
    bametels Posts: 950 Member
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    Thanks vinegar-husbands. I would never have thought about coupons for prescriptions. I'm a doctoral student so I need to check out what it would cost at the University pharmacy. I think I can get medicine pretty inexpensively there.
  • FitPhillygirl
    FitPhillygirl Posts: 7,124 Member
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    I've been on Synthroid since my early 20's so I really don't remember when I started feeling better. However, I believe it would have been when my blood tests were back in the normal range again.
  • FitPhillygirl
    FitPhillygirl Posts: 7,124 Member
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    bametels wrote: »
    My doc said if the levothyroxine doesn't work or if it causes problems we could try Synthroid but she is trying to be budget conscious. It's been a frustrating and expensive journey (as it was when I initially had the thyroiditis) to get a proper diagnosis and treatment.

    Most people (that I know of) with thyroid problems find that generic levo is far less effective than Synthroid. If generic levo doesn't work for you, I'd recommend asking your doctor for coupons. My past GP received tons of coupons from pharma reps.

    This was definitely the case for me as well. My levels on the generic brand were never as high as they are on Brand name Synthroid. So for a number of years now, I just pay the higher co-pay and get my Doctor to write Brand name necessary on the prescription for Synthroid.
  • toadqueen
    toadqueen Posts: 592 Member
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    I was on Synthroid, 25mg in 2012 for a couple of months - I gained weight and did not feel any better. I started on the generic, levothyroxine, same dosage with no physical effect but my TSH, T4, and prolactin levels improved. I recently started Cytomel 5mg in addition for very low T3 and have not seen any physical effects. I go next month for a follow-up with my new doctor and am eager to see the lab work. She also prescribes Armour, but I tried that also in 2012 following the Synthroid and gained more weight. There were likely other factors involved back in 2012.

    I've only taken these medications in the morning.

  • bametels
    bametels Posts: 950 Member
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    Eileen_S and toadqueen - Thanks for your responses. The more I read and the more responses I receive, it seems (not too surprisingly) that our bodies all react differently. I think this is going to be a journey and will take some trial and error to find out what works best for me. I'm grateful that my doctor seems open to various options, which does not seem to be the case for my other people dealing with this.
  • gaelicstorm26
    gaelicstorm26 Posts: 589 Member
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    I was diagnosed with Hashi's when I was 11 (I'm now 33). I've been on thyroid medication for a LONG time already. I started out at 25 mcg and now take 150 mcg. Over time my thyroid function has decreased.

    It can take some time for your levels to come down depending upon where you started. I was taking 112 mcg for a bit and a blood test showed that my TSH was 28. I took 125 mcg for a bit which got it down to 13. I'll have another blood test in a few weeks to see how the 150 mcg is working.

    As for feeling better, well, I've lived with this for most of my life and I don't really remember feeling any differently. For me, this is a good as it gets! I can usually predict when I need a med adjustment by my hair loss and dry skin, which you might not notice if you aren't diagnosed with Hashis.
  • bametels
    bametels Posts: 950 Member
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    Thanks, gaelicstorm26. I didn't realize that children as young as 11 can have Hashimoto's Disease. Sorry you have been dealing with this for so long. I don't have Hashimoto's Disease. I had thyroiditis about 15 years ago. The thyroiditis caused severe hyperthyroidism which damaged my thyroid and caused severe hypothroidism. My thyroid improved but I was warned that I was at risk for permanent hypothyroidism later in life. Well - now it's happened. Tonight I found a very comprehensive article on hypothyroidism published by the Univ of Maryland. It includes information about when you can expect various symptoms to improve. For those interested here's the web address:
    http://umm.edu/health/medical/reports/articles/hypothyroidism
  • Fuzzipeg
    Fuzzipeg Posts: 2,298 Member
    edited July 2015
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    This link is interesting, thank you.

    I understand the difference between naturally occurring hypothyroidism from dietary issues or related gland mis-functioning and Hashimoto's Thyroiditis is the existence or not of antibodies, when for some reason your own cells attack those of your thyroid. Hashi like Graves are autoimmune conditions. Some doctors test for antibodies others don't, because as far as they are concerned there is only one available course of treatent. Also, I think once you have antibodies you will always have antibodies unless your direct cause is found and addressed. Some do acheive a reduction in antibodies by medication. For some the use of selenium and other supplements will also reduce the antibody levels sometimes substantially.

    There can be many different causes of the initial inflammation which started the first attack on the thyroid. Unfortunately many people are un-diagnosed or under or incorrectly treated. Fortunately so much more is being learned by medics with open minds to what is going on within people with thyroid and associated issues. A great problem lies in that the majority of medical professionals national and internationally fail to recognise these developments and the part our genetics, diet, internal systems and environment can have on our lives and thyroids and treat accordingly.

    Everyone's experience of Thyroid problems will be very different because the thyroid is pivotal to so many of our body's systems that our personal areas of strain will show a different range of symptoms often not standard ones. Here on this group we have the opportunity to read what helps others and set their news against what we know of ourselves, giving us something to think about and apply if it seems appropriate.

    Some times we need to grasp our own straws before we find the cause of most of our health problems. I no longer take what any doctor says as "Law" my health comes first. This comes from many years of medical disregard of my symptoms.
  • T1DCarnivoreRunner
    T1DCarnivoreRunner Posts: 11,502 Member
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    Fuzzipeg wrote: »
    Hashi like Graves are autoimmune conditions. Some doctors test for antibodies others don't, because as far as they are concerned there is only one available course of treatent. Also, I think once you have antibodies you will always have antibodies unless your direct cause is found and addressed. Some do acheive a reduction in antibodies by medication.

    I'm not sure how medication is going to reduce antibodies unless you are taking imune suppressants, which you would have to take forever... and that is very high risk because exposure to other viruses and bacteria will be more likely to harm you.

    As far as the cause of Hashi's, it is 2 things (you must have both):
    -Problems with the HLA genes on chromosome 6
    -Trigger for the autoimmune response

    You cannot change your DNA... you are born with SNP's that your biological parents passed down to you. It sucks, but that's the hand you were dealt.

    You cannot go back in time and stop the trigger for an autoimmune response. Time travel is not available.

    Botom line: Once your immune system starts treating cells in your thyroid as a foreign substance that must be attacked, it will always see them that way. Our immune systems are not advanced enough to declare cease fires and stop attacking cells that it thinks need to be removed. The only way that outside substances have been able to get past our immune systems for a little while is by disguising themselves. This is why the influenza virus has mutated so many times.