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Endo wants to put Em on Synthroid.

Discussion in 'Parents of Children with Type 1' started by Tena, Apr 24, 2009.

  1. Tena

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    I have seen many on here who have talked about this drug. I was wondering if we need to look for any side effects.

    To back up a little, Em has tested positive antithyroid antibodies since dx. She just had new bloodwork on 4/14 and it shows that her antithryroglobulin Ab is 498 and range is 0-40, and Thyroid Peroxidase (TPO) Ab is 250, range 0-34. Her TSH has fluctuated high and in range.

    So now endo says "given the positive antibodies and the menstual irregularities the best course of action is to put her on Thyroid Medication Replacement." She is prescribing Synthroid 88 mcgs.

    I got this letter today after the endo was closed so I can't call til Monday. Are these things I need to really worry about? They never have really explained all this to us at all.
     
  2. Omo2three

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    been on synthroid for most of my life..I have not noticed any side effects.....

    except with out it...I felt tired, fuzzy thinking, depressed, sluggish, weight gain, cold, and moody. (some experience hair loss for hypothyroidism)

    If the medicine is too high of a dosage.......you may noticed irritability, weight loss, shakiness, absent menses, unable to sleep (symptoms similar to hyperthyroidism)
     
  3. Tena

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    What I can't figure out is Emily's hyper or hypo? I don't know enough about it.

    Another question? We are leaving for Disney World next Friday. Do I need to start her on this before we go? or should I wait til we get back? My mother suggested waiting since we already don't know how all the walking and activity at WDW will affect her. Should we add something else to the mix?

    I hate being ignorant concerning these things. :confused:

    Em's bg's lately have been all over the place. Endo has already made so many changes. Ratios and basals. All night basal testing. I am almost afraid to do anything else.

    Sorry if this post is so wishy washy and all over the place. Feeling a little overwhelmed and sleep deprived at the moment.
     
  4. Lawana

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    I have taken Synthroid for 20 years:(. Synthroid is prescibed for hypothyroid. Is she having symptoms? At an appropriate dose, Synthroid relieves symptoms of hypothryroid without side effects. Getting an appropriate dose can sometimes be a little tricky. Symptoms of a too high dose include rapid heart rate and jittery feeling, and can be rather uncomfortable. 88 mcg is not the smallest dose available- if she is not having noticable symptoms, maybe ask the endo if you could try a smaller dose at first, then increase if she has no symptoms of a too high dose.
     
  5. selketine

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    I've also been on it most of my life - it is not a scary drug to take.

    Personally I can miss a dose (or many days - I often forget to take it when I go on vacation - it is with me I just forget it!) and I don't notice any effects. I don't notice any effects if I change my dose either. My MIL claims that she can tell instantly if her dose is too high or too low and she practically has to lie down and gets the "vapors" and all sorts of stuff.:rolleyes:

    That does is not the lowest - but I take almost triple that (mine is probably one of the highest). I don't think your daughter would have a problem but talk to your doctor. If she is having the symptoms of lower thyroid then going on replacement thyroid would only help her feel better for her trip (more energy, etc.).
     
  6. Caldercup

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    I have Hashimoto's Thyroiditis (hypothyroid condition) and am on Synthroid at 88 mcg per day.

    The difference in my life has been enormous -- so much more energy, my skin and hair look normal again, and I generally feel like I did a decade ago.

    A couple things to know about taking this medication -- my dad is an endocrinologist and insists that I get brand-name Synthroid and not a generic. He has concerns about how the generics are made and, with such small doses of this med, it's important that you have confidence in its manufacturing process. (and, no... we don't have money invested in the parent company! ;))

    Also, it should be taken on an empty stomach and with a good sized glass of water. You should not eat for about 30-60 minutes after taking it.

    I do notice muscle cramps in my legs if I miss a dose, but my dad thinks that's psychosomatic as he says it has quite a long duration in the system. He says I shouldn't be able to notice any difference unless I missed three or four days in a row. Whatevs.

    Other than that, it's the easiest thing in the world to take and it makes a world of difference.
    Eileen

    PS - Hashimoto's is an autoimmune disease and, like Type 1 D, runs in families and people with one autoimmune disease often show up with others. (For example, I have Multiple Sclerosis and Hashimotos, three of my family members have Hashi's, and my son has T1D and is suspected of having Celiac.)
     
    Last edited: Apr 25, 2009
  7. frizzyrazzy

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    My daughter has been taking thyroid meds (Levoxyl - same thing, different brand) since 2005. We haven't noticed any trouble with it at all. According to everything I've read NOT taking the drug is more harmful later on than taking it. :) So it seems to be a highly safe and widly used drug.

    I wouldn't worry about starting before vacation if she's had no trouble. Just wait until you get home. But if you start before, you don't need to worry - activity and things like that won't effect the meds. I'm not sure how the meds in combination with D will work though...

    Hugs. It's hard when there's a new dx of anything, but luckily, this is a really easy one to handle. FWIW, my daughter takes 125mcg.
     
  8. 4MyBoys

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    My middle son (age 8) is on 50 mcg (the smallest dose) of Levothyroxyn (generic Synthroid) once per day. He started on it two days before we left for Disneyland. I was worried about starting before we left, but the Endo did not have any worries about starting it and leaving. Patrick has not had any issues with the med. Have a great vacation!!!!! -Allison
     
  9. Tena

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    Ok, I received the script by mail today. Her endo has prescribed Synthroid 88 mcgs Brand Name only.

    What exactly are the symptoms I need to look for?

    I do remember them asking last week if she was having dry skin, losing her hair, acne. She has had acne really bad since puberty started and they started her on Yazmin for that in January. She also has HORRIBLE bg's before and during her period so the Yazmin is helping that too. She doesn't have the other symptoms they asked about.

    They also kept asking if she was taking a multi-vitamin which she wasn't. But Now she is.

    You are so right, Michelle. A new dx is horrible to deal with. It is like "what else?" and "just how much more does she have to deal with and go through?"

    You know, Emily is such a great kid, always has been. She has never given us 1 iota of trouble. She is an honor student, loves God, a good friend, just all around a great person. It just isn't fair!!! She certainly doesn't deserve this (which I know no-one does) but it seems so unfair, yet she never really complains. I am having more trouble dealing with all of this (D and Hashimoto's) way more than she is.

    Pray for me I sure need it.
     
  10. CButler

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    I'm sorry Emily has yet another immune problem to deal with. I was upset when my daughter was diagnosed with it too. But...all she has to do is take the pill once a day and she feels so much better than she did. It is a habit for her to take it now. I do know what you mean though about having yet another thing...:(

    I will say a prayer for you guys.
     
  11. Caldercup

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    I didn't notice any adverse side effects of taking Synthroid -- only benefits. I slept more deeply, woke more rested, my dry skin cleared up (I was almost "scaly" on my shins) and my hair started growing out glossy.

    I hope your daughter has as good an experience with Synthroid as I had.
    Eileen
     
  12. Tena

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    Em and I talked a little about what everyone is saying on here about this med. One thing she and I both realized today is that she feels so tired all the time even with good bg's. She usually feels the need to take a nap every day. She actually laid down tonight at 7:30. :eek:

    She is 16 for crying out loud. Should she be this tired? Is this one of the symptoms we should see? Will this med help this?
     
  13. Lawana

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    Absolutely. Being tired is one of the classical symptoms of hypothyroid, as is depression, feeling cold, dry skin, menstrual irregularities. One need not have all these symptoms. These are just the most common ones. Getting on an appropriate dose of Synthroid is a God-send for someone suffering from hypothyroid. Do be aware of symptoms of too much Synthroid- rapid heart rate, jitteriness, feeling hot.
     
  14. Tena

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    Thanks, I am going to go ahead and get this filled today and start her on it tomorrow. I am hoping it will help her not feel so tired for our upcoming trip. Course I am already worried about how WDW will affect her bg's.

    I don't know what I'd do without all of you here on CWD. I am really bad, as I don't post very much. But I do read here EVERYDAY, and I have learned so much from you all. Em posts on the Teens board way more than I do, I really need to remedy that.

    I do appreciate you all so very much. I feel much better about starting her on this med. I am still going to call endo tomorrow to make sure about the dosage and what to do if she has the symptoms of too much as you mentioned. Thanks again.
     
  15. Omo2three

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    good luck with your trip! I am glad you decided to start her on the meds it will help her feel better.

    After a day or two I felt better on the synthroid...she will have more energy and put her in a better mood...there is very little side effects with meds. If you have questions talk to the pharmacist. The reason they ask about multi vitamins is I believe it will not absorb with the calcium. May need to give the multi vitamin at a different time.

    click on this link for mor info...or go to webmd.com
    http://www.webmd.com/a-to-z-guides/thyroid-hormone-medications-for-hypothyroidism
     
  16. Tena

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    Thanks for the website. That is the most information I have gotten about this. I am about to go pick up her prescription now. I guess we would start in the morning. Hopefully if she has any of the symptoms for too high of dosage it will happen before we leave for WDW.



    Our CDE and Endo both have told me (because I am nervous about bg's while we are gone) to keep the emergency # handy at all times and they will take my calls at any time while we are gone. I guess if we are in FL and she needs a lower dosage they could just call it in to a pharmacy there. I hope anyway.

    I was actually about to post the question of how long before she felt a difference and the answer was already here before I could ask.

    I knew I could count on you guys. I feel so much better about this now. Thanks again.
     
  17. Caldercup

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    Oh yeah, I totally forgot about how the Synthroid evened out my menstrual cycles too -- after decades of regular cycles, I started having incredibly heavy cycles followed by months with practically nothing. Now, with the Synthroid, my cycles are much more like they used to be.

    As for the tiredness, it was like night and day for me. One day I was barely able to keep my eyes open after 4pm and the week after I started taking Synthroid, I was bouncing with vim and vigor.
    Eileen
     
  18. Tena

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    Thanks Eileen, I really appreciate all the info. When I picked up Em's script today they had give her the generic L(something) sodium. I can't remember now. Anyway I specifically remembered her script saying "Brand Medically Necessary" so I made them change it.

    Now my question is: why can't she have the generic?

    Man the cost is much cheaper. My copay for Synthroid is $16.60 for 30 pills or if generic $10 for 90 pills. That is a big difference.

    Now don't get me wrong. I want only what is BEST for Emily. If she needs the Brand Name that is exactly what we'll get. I honestly don't know. I am still learning about all this and I can't phone endo til morning. So if someone knows the answer please let me know.
     
  19. frizzyrazzy

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    I know that for a lot of people the brand names work better than the generic. It's something that's very common with thyroid drugs. I don't know why but even our endo has backed that up and yours probably will too. My daughter was ok on generic for a while and then it pretty much stopped working, so she's only on brand name now (levoxyl) Syntrhoid and Levoxyl are the two biggies (I don't even know if there is a 3rd drug...anyone know?)

    For my daughter she didn't even know she had symptoms of thyroid until after she didn't have them any more. Tiredness was the biggie, but she just figured it was normal. She also had puffiness in her face which I just thought was her face..but that also went away too. Otherwise, nothing remarkable for the thyroid symtpoms and nothing at all for the med symptoms. I was like you, very worried about giving her this drug...forever...but it's just been such a non-issue. The hardest part was initially figuring out when she should take it - on an empty stomach, so many hours after a meal etc...that was hard. So now she takes it before bed. That works for us.
     
  20. Caldercup

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    The way my father (the endocrinologist -- and a Philadelphia Magazine "Top Doc" for years and years) explained it to me was that there had started to be concerns about how thyroid meds were being manufactured in the generic forms -- something to do with efficacy and other inert materials. (I can't remember, but I can ask him again and report back if you'd like.)

    Essentially, he said that the dosages were so small that even slight fluctuations would be something we'd want to avoid.

    <<shrug>> The price difference for me was practically nothing between my co-pay and what the brand name cost, so I never questioned it further.

    However, if your doctor specifically indicated Sythroid over levothyroxine (the generic), then the pharmacy needs to fill it appropriately and good for you for catching their error.

    Eileen
     

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