Hypo-what's your worst symptom?

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  • charm_quark
    charm_quark Posts: 316 Member
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    The last month... I have so many issues, and I tend to forget that I have Hashis.
    Such as this last ones.
    (I have to say, that I'm making an appointment with my endo after holidays to do some new blood tests, because I there has been almost one year since I last did them)
    So here is my awful symptoms which made me just a step before going to visit other doctors.

    1. Severe constipation (I have been diagnosed 9 months ago with IBS-C). I mean severe for my body... as I know it.
    2. Low grade fevers, at the night. Accompanied with lot of muscle and bone pain.
    Oh my god... so much bone pain... specially hip pain. I thought it was flu... but then, all the other day I didn't feel anything. Not a sore throat, not a thing!
    3. Dizzines, I thought it was from the fever from the flu. I never get to doctor but I was worried... why I was so "lightly" sick but hurt so much?
    4. Feeling so freaking cold. I know it's winter, but my toes really hurts from cold. I can do nothing to keep them warm. I put my feet between my hubby's but neither this works. Cold and pain... Ew... It must have been one of the worst months of my hypo-life...
    5. Gain weight... and here it comes. The big bang. On 12/11 (just about 2 weeks ago) a few days before TOM comes, the scale showed a sudden loss. I was at the mood "thank god, I'm on that plateau almost a month". And then... I began to gain. And what a gain! Are you ready?
    19 lbs in 15 days! Yeap! No clothes to fit in. Yesterday I saw the scale and here it comes...
    6. Depression.

    I was so badly disapointed, trying to find out what the heck did I eat in Christmas to gain so much? Did I eat 15 turkeys by my own? Maybe 15 chocolate birthday cakes? Even if I did eat them would I gain 19 pounds?
    I look at the mirror... what a tummy! Like I'm 14 months pregnant! I'm so bloated? Can a person retain so much water??
    But then... I think of all the above symptoms and make the sum;
    christmas honey cookies: 3-5 pounds
    constipantion: 3-5 pounds
    water retention: 10 pounds.
    Now it seems reasonable.
    I'm seeing my endo as soon as possible.
    I'm going to sleep now.. Feeling so tired while writing this message.
  • islandmonkey
    islandmonkey Posts: 546 Member
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    My meds are starting to be at a pretty good dosage but I still have constipation problems. I also forget things easily and have trouble getting things started be it work, school or whatever. I used to be really sensitive to cold, this is probably the first winter in years that I don't have to deal with it as much.

    If you are that symptomatic your thyroid hormones are probably too low. Is your doctor testing just TSH? If so I'd go ask for your free T3 and free T4 to be tested, as these are your actual thyroid hormones.
  • islandmonkey
    islandmonkey Posts: 546 Member
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    I'm seeing my endo as soon as possible.
    I'm going to sleep now.. Feeling so tired while writing this message.

    Please ask your endo to test your free T3 and free T4, and not just your TSH. If he/she refuses then find a new doctor. TSH is a terrible indicator of thyroid function, as it's a pituitary hormone, and can also be quite suppressed in people already taking meds. You want your FT3 and FT4 to be in the top 1/3 of the range your lab uses (these are optimal levels, as opposed to "normal" or "fine"). If you get a copy of your labs and post them here I can help you interpret the results.

    What meds are you on? I'm guessing probably a synthetic T4-only one like synthroid or levothyroxine? If so I would strongly suggest you look at adding a synthetic T3 like cytomel. Or preferably look at switching to a natural/dessicated med that contains both T3 and T4 (and T2, T1, etc).
  • lorcart
    lorcart Posts: 406 Member
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    Soooo slow to lose weight yet SO fast to gain it...brain fog and moodiness.
  • charm_quark
    charm_quark Posts: 316 Member
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    I'm seeing my endo as soon as possible.
    I'm going to sleep now.. Feeling so tired while writing this message.

    Please ask your endo to test your free T3 and free T4, and not just your TSH. If he/she refuses then find a new doctor.
    She always tests me for all 3 hormones. FT3, FT4 and TSH. TSH was always at the top edge and that was the reason she increased my dosage last year and the lowest levels were about 2.3 (top normal 4). But even with 4 TSH I didn't have all these symptoms together. I've never had muscle pains, and I couldn't imagine that it might be Hashimoto responsible for this.
  • islandmonkey
    islandmonkey Posts: 546 Member
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    I'm seeing my endo as soon as possible.
    I'm going to sleep now.. Feeling so tired while writing this message.

    Please ask your endo to test your free T3 and free T4, and not just your TSH. If he/she refuses then find a new doctor.
    She always tests me for all 3 hormones. FT3, FT4 and TSH. TSH was always at the top edge and that was the reason she increased my dosage last year and the lowest levels were about 2.3 (top normal 4). But even with 4 TSH I didn't have all these symptoms together. I've never had muscle pains, and I couldn't imagine that it might be Hashimoto responsible for this.

    Where are your FT3 and FT4 levels sitting? Are they optimal? (in the top 1/3 of the range your lab uses)
  • Ramoth48
    Ramoth48 Posts: 93 Member
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    Well l've been hypo for about 6 years now and previous to that l was supposed to have been hyper. l was diagnosed in 1995 and the main clue my doctor had was the uncontrollable diahorea, the shaky hands, my goiter which wasn't really that bad and being tired. None of my symptoms were ever as bad as any you guys have so l guess l'm lucky. l have read every post and just wondered why no one else seems to have suffered the diahorea symptoms, is it an embarrasment thing lol or am l unique in this. Thankfully that was sorted out very ealry on, but l spent years on different levels of Carbizmazole ( l think that how it's spelt) before l had Radio-active Iodine- 2 does- to kill part of my thyriod. l have never really had the constipation problem thank goodness. l started a diet in January and have lost 4 stones since then although most came off the first 6 months but l feel so much better now.When l was hyper l was still very overweight which l couldn't understand as l believed people were supposed to lose weight when they were hyper as my sister did but l had gained, is this a common mis-conception or was l mis-diagnosed?
  • islandmonkey
    islandmonkey Posts: 546 Member
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    She always tests me for all 3 hormones. FT3, FT4 and TSH. TSH was always at the top edge and that was the reason she increased my dosage last year and the lowest levels were about 2.3 (top normal 4). But even with 4 TSH I didn't have all these symptoms together. I've never had muscle pains, and I couldn't imagine that it might be Hashimoto responsible for this.


    Also, wondering what you mean on "top normal 4"? Since 2002 the top of the TSH range has been 3.0, and that will soon be reduced to 2.5. Many educated doctors think it should be down to 2.0.

    As well, when taking thyroid meds your TSH can be quite supressed. So if you have a TSH of 4 I would call that very hypo!!

    My last TSH was 2.3...while recovering from a total thyroidectomy. And my FT3 and FT4 were at the very bottom of the range, and I could barely function. So if that's the lowest your TSH has gone I would definitely call that hypo still and not properly dosed.
  • charm_quark
    charm_quark Posts: 316 Member
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    Also, wondering what you mean on "top normal 4"? Since 2002 the top of the TSH range has been 3.0, and that will soon be reduced to 2.5. Many educated doctors think it should be down to 2.0.

    I had a TSH 4 on November 2011 taking 62ugrams of levothyroxine sodium. Raised that to 75ug and had TSH 2.something I cannot recall on March 2012. Hadn't have any test blood since then.
    The lab's normal is at 4. My endo wanted it around 2.

    I can't recall the other numbers,but it will be the first thing to do in 2013! :wink:
  • islandmonkey
    islandmonkey Posts: 546 Member
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    I had a TSH 4 on November 2011 taking 62ugrams of levothyroxine sodium. Raised that to 75ug and had TSH 2.something I cannot recall on March 2012. Hadn't have any test blood since then.
    The lab's normal is at 4. My endo wanted it around 2.

    I can't recall the other numbers,but it will be the first thing to do in 2013! :wink:


    Your lab has the incorrect top of the range. TSH is a standardized test; and the American Association of Clinical Endocrinologists has set the top of the range at 3.04.
  • candypa
    candypa Posts: 73 Member
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    bump
  • trimom10
    trimom10 Posts: 388 Member
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    Right now, I have a few:

    1. Mental fogginess/forgetfulness (I feel truly lucky that my Christmas baking turned out as well as it did)
    2. Depressed, crying frequently (I'm a basketcase according to my husband)
    3. Weight gain (seven pounds since Thanksgiving, 15 since September, so back to the 1200 calories a day)

    I was actually hyperthyroid and have been on methimazole since Oct 2012... well I think it's working too well. Went to have lab work done before Christmas:

    TSH = 5.37 (dr said slightly elevated with normal range listed on my report being 0.30 - 5.00)
    Free T4 = 0.86 (normal range 0.71-1.85)

    Based on my test results my doctor was going to make a slight adjustment, but after speaking with me about my symptoms, he cut my dosage even more. However, I'm not sure it's enough. It shouldn't be this difficult. Isn't it the 21st century, the year 2013?!?!?
  • islandmonkey
    islandmonkey Posts: 546 Member
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    TSH = 5.37 (dr said slightly elevated with normal range listed on my report being 0.30 - 5.00)
    Free T4 = 0.86 (normal range 0.71-1.85)

    Ok, you are crazy hypo and need to cut your meds NOW, or at least have them reduced to a minimal maintenance dose.

    TSH range is actually .3-3.0 and has been since 2002! Most labs haven't updated that on their paperwork.

    Your free T4 is in the tank, I'm surprised you can function.


    I would want to go off the meds, and would also want my free T3 tested. You are so hypo right now I don't know how you're functioning. Those levels are worse than mine right after my whole thyroid was removed!!
  • nakiarhall
    nakiarhall Posts: 51 Member
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    my Tsh is 12.5 and Ft4 is 0.7
  • PurpleCoookie
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    sudden weight gains, thinning hair, brain fog

    But I could deal with these if I wasn't so tired all the freakin' time. All I want to do is sleep or lay in bed all day. I don't understand when I first started losing weight in summer of 2011, I had losses every week and energy till December. Seems like somebody zap the energy out of me,...
  • cindersmate
    cindersmate Posts: 15 Member
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    Don't know where I have been hiding but I didn't realise that vertigo was caused by being hypothyroid. But it does expain one or two things. I seem to have constant buzzing in my left hand side head/ear. and sometimes when walking i do go dizzy. However, apart from the weight gain I would say that my worst sympton is shortage of breath in my upper chest. I keep telling the consultant that since my thyroidectomy I can walk or talk but not to both together but don't seem to be getting anywhere.
  • christinekry
    christinekry Posts: 86 Member
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    For me it's the lethargy. Everything makes me tired. Even thinking about doing something makes me mentally exhausted. All of it is just exhausting. The weight gain sucks too. It's super easy to gain 10lbs in a week, and people say it's just water weight and not possible, but I don't see it come back off unless I work really hard.
  • weirdmommy
    weirdmommy Posts: 25 Member
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    This is awesome a topic on this. Nice to know I'm not crazy. Mine would probably be the weight gain and being tired. I can sleep 12-14 hours. I'm on 50,000 units (or whatever they are called) of Vit. D a week now. I think it might be helping. I hate to feel like I'm falling apart daily. I'm sick of complaining and crap. I'm only 37. come on body....act like it...Not like I'm 87!!!!!!!!!!!!!!
  • Leeann1979
    Leeann1979 Posts: 1,090 Member
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    always tired, always cold
  • incognitopotato
    incognitopotato Posts: 26 Member
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    I've seen it mentioned a few times, but can anyone provide me with a reference for the AACE guidelines suggesting keeping TSH under 3.0 for patients on levothyroxine? All I can find on the AACE website (https://www.aace.com/files/hypothyroidism_guidelines.pdf) is this:

    "RECOMMENDATION 17: In patients with hypothyroidism who are not pregnant, the target range should be the normal range of a third generation TSH assay. If an upper limit of normal for a third generation TSH assay is not available, in iodine-sufficient areas an upper limit of normal of 4.12 mIU/L should be considered and if a lower limit of normal is not available, 0.45 mIU/L should be considered."

    My TSH is 3.5 and I feel like crap despite this being within normal limits per the lab, so I would love to have something backing me up at my upcoming endo visit :) Thanks!