**Hypothyroid Support Group**

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  • SarahMorganP
    SarahMorganP Posts: 921 Member
    bump
  • tulip07
    tulip07 Posts: 167 Member
    tulip,
    thank's a million for your advice, i kinda knew not to tamper with the meds.
    I will switch to mornings from tomorrow and see how that goes.
    I so don't understand the numbers and the www is so full of conflicting information, hence my post , i knew that there would be knowledgeable real people on MFP who could give so sound advice.

    I am going to try to get a private appointment ( €200) with an Endo even though we are broke at the minute, as they say your health is your wealth, and i just can't go on like this for much longer.

    Sam

    You are very welcome! When you see the endo, and they say you are hyper now and want to reduce the dosage of your medicine, make sure you tell them you are having all these symptoms which indicate you are hypo and maybe not hyper. That way they may switch you to a different kind of medicine (I am on Armour thyroid because of the exact same symptoms that you have. numbers showed hyper, but symptoms were hypo. So they switched me from Synthroid to Armour).
  • misslyssa319
    misslyssa319 Posts: 186 Member
    sam, sorry you are having such a hard time getting the answers you need but never change your med dosage without docs approval. and it is best to take in the morning on an empty stomach so it gets absorbed right away. and like i've said before, just because your tsh is in the "normal" range doesn't mean that number is normal for you. you might do better at a higher than a lower level. it's a constant state of adjustment for us...
  • misslyssa319
    misslyssa319 Posts: 186 Member
    ps: i'm glad to see us helping each other! we are all in different stages of this disease and even though i've had it since i was 13 i learn something new everyday! if anyone is on fb they have an awesome hashi's support group:

    http://www.facebook.com/#!/groups/5772507259/

    :bigsmile:
  • Shybea81
    Shybea81 Posts: 67 Member
    It's so nice to find this group. I was diagnosed a few months ago. Really, it didn't come as much a surprise since my mother and sister both have graves disease. Unfortunately, I gained 30 pounds before I got smart and called my doctor. I can't really blame it all on the metabolism though, when I get moody and/or sleepy I eat and I spent a lot of time moody and sleepy before I got on medication. Hopefully between will power and this site I can drop the 30 pounds I gained and (fingers crossed) 20 more pounds after that. =)
  • Gottastop
    Gottastop Posts: 67 Member
    With the thyroid meds it will take a week or two to notice a difference, so don't stop after a day or two if you don't notice anything yet.
    Also is it possible for your Dr to refer you to an Endo & see if they can get the appointment sooner?? (Sorry, also in the US, not sure how your health system works).
    The one book I keep meaning to try & get a newer version of is Living Well with Hypothyroidism; that might help explain so things better because you are right, the web can been FULL of misinformation
    Good luck!


    tulip,
    thank's a million for your advice, i kinda knew not to tamper with the meds.
    I will switch to mornings from tomorrow and see how that goes.
    I so don't understand the numbers and the www is so full of conflicting information, hence my post , i knew that there would be knowledgeable real people on MFP who could give so sound advice.

    I am going to try to get a private appointment ( €200) with an Endo even though we are broke at the minute, as they say your health is your wealth, and i just can't go on like this for much longer.

    Sam
  • noeys
    noeys Posts: 56
    Hello everyone. *pulling up a chair*
    I was diagnosed with Hashimotos after I had my last baby (3 years ago) though it took a year I think to get diagnosed. I kept asking my doc to check my thyroid levels because it runs in the family, and starts around 28-30. (cause its hashimotos, and it takes that long for it to damage our thyroid apparently) anyways.... changed docs cause my doc was a spaz and didnt think I had it (and many other reasons) found out TA DA I do.
    I was put on generic synthroid and also cetamil, but have since moved to another state, and my doc here took me off cetamil and Ive been having issues since then. She just upped my synthroid yesterday, so we will see if that helps, otherwise I might ask for cetamil again.
    NOT that it helped with my weight. Ive gained 30 lbs since I had my son, without changing anything. Ive tried diet after diet without losing anything. Even this past month Ive been trying so hard, and havent lost. EVEN two weeks of southbeach... NOTHING! Who doesnt lose the first 2 weeks of southbeach? OH ME!!!! :( *sigh*
    Anyways, hoping to learn some new things and get support on here... applied to join that FB group too (Thanks for the link)
  • SarahMorganP
    SarahMorganP Posts: 921 Member
    I have suffered from hypo for over 10 years. I am one of the unlucky ones that no matter how good my numbers are I still have all of the symptoms. However since starting cytomel in addition to the synthroid, my symptoms have gotten to the point that I can at least function. I never feel "good" or "normal" but I can function and not feel like I want to die all the time. So that is a huge plus. My endo likes to keep my number to no higher than 1, when I get any higher than that (even if I stay under 4) I start to get suicidal. I also have a pituitary tumor now so that really messes with my hormones as well. Fun times! LOL
  • LJGmom
    LJGmom Posts: 249 Member
    I gained 4 lbs this week, and haunt gone over my calories, and I'm exercising too. I just had labs done in august, so I don't know what's going on, but it is soooo frustrating!
  • sunnyrunner23
    sunnyrunner23 Posts: 182 Member
    I have a question...lately having trouble sleeping through the night and getting so warm I get night sweats. Is this a sign of too much Synthroid or not enough?

    I have had Hashimoto's since I was 19 yo and I am 45 now. I have been on the same dosage forever and when they decrease it I feel like ****ake!!!

    I was just wondering if this is a sign of Thyroid inbalance or just something else?

    any input?
  • misslyssa319
    misslyssa319 Posts: 186 Member
    I have a question...lately having trouble sleeping through the night

    i've always had insomnia which is funny considering how exhausted i am during the day. and even if i do get more than 6 hours of sleep a night i'm still wanting a nap the next day...:yawn:
  • misslyssa319
    misslyssa319 Posts: 186 Member
    jus checking in and hoping everyone had a good week!
  • samhradh
    samhradh Posts: 297 Member
    just checking in,

    i managed to get a cancellation, so i go to see the Endo next Wednesday. i have written out a list of how i'm feeling so hopefully we can get this sorted.

    i work on a turkey farm so i need to be firing on all cylinders for the next 6 weeks.
    Some of the personal stresses that have dogged me over the last couple of months have been resolved, so finally it's time for ME.

    i'll drop in next week and let you all know how thing go.
  • slieber
    slieber Posts: 765 Member
    I've had a horrendous couple of weeks. Was taking the generic for Levothroid and it totally didn't work for me. Collapsed twice and just couldn't cope. Pharmacy had to order the brand in so I had to wait some days for it. Have had it now for about 3 days and, along with all the extra sleep, I think I might be doing a turnaround again. I can only hope. Had a blood test last week and have the doctor during Thanksgiving week to get the results.

    Won't know if I'm REALLY okay for another week or two. Crossing fingers....
  • abcwhite10
    abcwhite10 Posts: 140 Member
    I have a question...lately having trouble sleeping through the night and getting so warm I get night sweats. Is this a sign of too much Synthroid or not enough?

    Did you figure anything out with the insomnia/night sweats and if it's a dosage issue?
  • superrjo
    superrjo Posts: 112 Member
    I was diagnosed with hypothyroidism when I was 13, but I never thought weight gain was something that affected me from it, until now and I realised I've gained a stone. I'm desperately trying to lose some of it before I go home for Christmas, but will my thyroid slow down the progress? I went to get my bloods done yesterday because Ive been feeling really run down and low for the last couple of months, so hopefully this'll help make sure I'm on the right dosage..
  • slieber
    slieber Posts: 765 Member
    Update: The blood test on the levothyroxin (generic) had my level worse than before, on the lower dose of Levethroid. Since being on the brand, however, my body is feeling pretty good. We're waiting now for three months for the next set of tests. If I start to crash again, though, I'll ring for a test sooner rather than waiting for the scheduled date.

    Weight's stabilized. All current gain is solely due to lack of control last weekend....so I know I can lose it if I can stay on track! <grin>
  • robynrae_1
    robynrae_1 Posts: 712 Member
    bump, will come back later to read.
  • I have a question...lately having trouble sleeping through the night and getting so warm I get night sweats. Is this a sign of too much Synthroid or not enough?

    I have had Hashimoto's since I was 19 yo and I am 45 now. I have been on the same dosage forever and when they decrease it I feel like ****ake!!!

    I was just wondering if this is a sign of Thyroid inbalance or just something else?

    any input?
    sounds like pre-menopause,, I went through it for 2 years,, now no more night sweats.

    It is one of change of life crap along with hot flash and whatmore.
  • slieber
    slieber Posts: 765 Member
    New update: Now have my levothroid and something called liothyronine - the T3 "active thyroid" replacement. Been feeling cruddy but at least didn't lose strength. Began collapsing again, though, so today's appointment had that added. I also was gaining again, despite the working out and eating properly.

    Hopefully this will help!!
  • Rover234
    Rover234 Posts: 17
    I've been dealing with Hashimotos and a multi nodular goiter for the past 13 years. I started out taking Synthroid but my body reacted horribly and found out that I was allergic to one of the fillers in the pill. I was then put on Eltroxin and since working out and running as well as eating much healthier I have managed to lose some weight. It is important to research foods that work against proper functioning of your thyroid, soy products/peanuts etc are just two examples of foods that interfere with thyroid medication working properly. I am lucky to have a great doctor who checks my TSH levels every three months and takes me serious when I notice small changes in my symptoms. Pay close attention to symptoms like night sweats, bleeding/spotting, depression etc, you know your body better than anyone and when these kinds of symptoms arise you can bet that your dosage needs adjusting! Hang in there ladies, it is more than possible to lose weight, lots of cardio and strength training will improve your physical and psychological state and at the same time will enable you (your Doctor) to decrease your dosage!
  • I'm so excited this support group exists. I have hassimotos disease and ever since I was diagnosed last fall trying to find the righ:smile: t dose of medicine has been a battle. I think I finally have the right dose which I was just put on six weeks ago. I actaully feel like working out and trying to get back to the old me instead of napping constantly and having no energy. Any tips on how to overcome some of the challenges like energy problems ? Or having trouble concentrating?
  • bjsquires
    bjsquires Posts: 72 Member
    I was diagnosed w/ Hypothyroid in July 2011 and was prescribed Levothyroxine 50mcg. Nine months later I am up to 100mcg and still not feeling totally normal. I am due to get my levels checked again this month.
    I started out completely and utterly drained of energy. I was constantly exhausted and did nothing but sleep. I gained 20lbs in a years time. I was shocked to learn my thyroid was not functioning properly-I don't even know what the thyroid does! I just thought I was depressed-and who wouldn't be after gaining 20lbs and being tired all the time. My life consisted of sleeping and napping. Getting through my days and nights of work was a struggle.
    Last month, I went back to the doctor because I was feeling severely off kilter. I was going through stages of insomnia and mind racing thoughts, not being able to focus/concentrate, then I would crash and sleep for hours and hours and hours. One day I slept for 17straight hours. He did some blood work and found that my levels were still low and upped by Levo to 100mcg. He also sent me for ADD, Depression and Anxiety testing...will get the results from those test on Tuesday.
    Lucky for me, my husband did not give me a hard time-he did joke about me being lazy but he knew there was something wrong with me and pushed for me to go to the doctor.
    i
  • DanielleRN8
    DanielleRN8 Posts: 409
    I was diagnosed in 2009 after gaining 50 pounds in 6 months! My levels fluctuate all the time so it's hard to keep up with! I'm hoping we can level it out so I can get back to getting in shape!
  • Hi. I'm Lucy. I was diagnosed with Hashi's about eight years ago. I was put on Levothyoxine and noticed an improvement within a week. For the following several years, I was pretty stable. I had no issues with weight gain, or any other symptoms.

    At one point all of my symptoms returned, and I felt exactly as I had before diagnosis, but my levels were normal range. I couldn't understand what was going on, and my doctor had no clue, only telling me my labs were fine. After doing my own research, I discovered when I changed to a new pharmacy, they had taken the liberty of subbing out for the generic. I did research on the internet, and discovered that the generic is not consistent and can cause problems for people. Sure enough, once I got back on the name brand, I got better again. For a while...seems like every 9 mos to a year I need to switch doses, sometimes up and sometimes down. I have bounced from 100mcg to 88mcg to 112mcg, back to 100mcg, etc.

    I started having issues with tiredness a little while back. I had labs done and found out I was anemic, at 10.0 (normal is 12-15). I tried to correct with diet, but continued to feel tired. I did not consider my thyroid since I had been diagnosed with anemia, and my thyroid had been stable for a while. However, when I did labs again recently to check the anemia, I discovered that my anemia had dropped to 9.2 and my thyroid was at 10.9 (should be between 2-5 I believe). Since then my doctor wanted to increase my Levothyoxine from 100mcg to 125mcg. I was nervous to jump up that high, so I had her put me on 112 for one month to see how I do (along with an iron supplement). I have been on the new dose for about 10 days, and that combined with the iron did give me more energy at first, now the past few days I have had a little trouble sleeping..this results in needing a nap the next afternoon. I also have not been able to lose any weight, despite watching my calories and working out (2-3 hours a day/4 times a week and being a server in a busy restaurant -- not sedentary).

    Anyway, I'm half way hoping that my levels are still off next time I have my labs, in a week or so, that will at least explain why I am still tired and not losing. Hmmmmm....

    Thanks for starting this group, it's nice to know how others deal with this, and give and get support!

    :)
  • Calipalm
    Calipalm Posts: 114 Member
    Me!! *bump*
  • So great to find a thread for the very frustrated hypos out there!!! I was diagnosed a little over a year ago, and in the last 2 years, have gained over 30 lbs. I have been on Levo for about a year, and was not feeling any better, no matter the dosage. Finally, my Dr. put me on Synthroid (about 3 weeks ago) and I already feel so much better! I cant believe the difference in the name brand as compared to the generic!!
  • slieber
    slieber Posts: 765 Member
    Around 6 or so weeks ago, I had my blood work, which was within normal range, but I was still "collapsing" and was unable to function well at all. I was given the choice to up the dose to 75 micrograms or take the 50mcg with a dose of direct T3 (Liothyronine) 50mcg.

    I'm pleased to say that the above combo has worked so far. No collapses at all (apart from ones that are well-deserved!) and the sickness I would get right before my cycle has virtually disappeared.

    Perhaps that's a route for some - direct T3 in addition to the T4 given?
This discussion has been closed.