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  • Hashimoto's - No treatment

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    Old 03-13-2007, 02:09 PM   #1
    stef814
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    Unhappy Hashimoto's - No treatment

    I have been having problems since August of 2006. I have been to my endocrinologist many times since then, having bloodwork, x-rays, you name it, every test possible.
    (I also have Crohn's Disease and get kidney stones often.)

    He told me my thyroid levels are normal for now but I have a very high level of thyroid antibodies and that I have hashimoto's disease. He is not very helpful and does not answer my questions and I am so frustrated because I am suffering from very uncomfortable symptoms.

    I have high anxiety, panic attacks, mood swings, I have recently gained about 12 pounds for no reason, I am exhausted all of the time and have very sore muscles and joints.

    He insists there is nothing I can do and no treatment for me or medication.

    I am going to see a new specialist , but cannot get in until May.

    Has anyone else had the experience where they suffer from Hashimoto's Disease and its symptoms and was told there was no treatment?

    Please help!

     
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    Old 03-13-2007, 02:12 PM   #2
    stef814
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    Re: Hashimoto's - No treatment

    I also suffer from constipation, eye swelling and a constant tightness lump feeling in my throat.

     
    Old 03-13-2007, 02:23 PM   #3
    sue1234
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    Re: Hashimoto's - No treatment

    Your symptoms sound suspiciously like hyperparathyroid:

    recurring kidney stones
    aching muscle/joints
    constipation
    anxiety

    Have you had your calcium levels(serum, reg. and ionized) checked over the last few years? Have you had your PTH checked? A Dr. Norman in Florida gives alot of information on the condition.

     
    Old 03-13-2007, 02:28 PM   #4
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    Re: Hashimoto's - No treatment

    thank you for your reply...i have also been tested for that recently and he said i do not have that and my calcium levels have been tested and i have an off balance PH only (i get kidney stones from my crohns disease).
    what im mainly concerned about is my weight gain all of a sudden...i lost a lot of weight all of a sudden last year and then gained a whole bunch suddenly recently. i am constantly bloated and tired.
    at my last appointment (last month) he told me I definitely had Hashimoto's disease but there is no treatment since my thyroid levels are fine and just have high antibodies....i am just frustrated with these symptoms.

     
    Old 03-13-2007, 02:30 PM   #5
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    Re: Hashimoto's - No treatment

    I just hate when they tell you there is no treatment for hashi's. The fact is, you treat it just like you would Hypothyroidism, with meds. With hashi's you will have fluctuations, and it will be harder to regulate your levels, but the process is a LOT easier if they put you on meds. Hashi's is the leading cause of Hypo-T and if they wait to treat you till your TSH is out of range, you probably will end up feeling worse then you do now and end up with many more problems. Anxiety, constipation, mood swings, panic attacks are all
    part of hashi's and can get a lot better with treatment.
    I hope the specialist will have half a brain and treat you.

    By the way, what thyroid levels is he calling normal? Call them and get the names of the tests done along with your result and the lab range. We can tell you if it is "normal" or not.

    Last edited by dea4; 03-13-2007 at 02:33 PM.

     
    Old 03-13-2007, 02:44 PM   #6
    stef814
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    Re: Hashimoto's - No treatment

    Quote:
    Originally Posted by dea4 View Post
    I just hate when they tell you there is no treatment for hashi's. The fact is, you treat it just like you would Hypothyroidism, with meds. With hashi's you will have fluctuations, and it will be harder to regulate your levels, but the process is a LOT easier if they put you on meds. Hashi's is the leading cause of Hypo-T and if they wait to treat you till your TSH is out of range, you probably will end up feeling worse then you do now and end up with many more problems. Anxiety, constipation, mood swings, panic attacks are all
    part of hashi's and can get a lot better with treatment.
    I hope the specialist will have half a brain and treat you.

    By the way, what thyroid levels is he calling normal? Call them and get the names of the tests done along with your result and the lab range. We can tell you if it is "normal" or not.
    thank you very much. i will have to get a copy of my test results, that is a really good idea.
    i am going to see my primary doctor Monday, she is very knowledgeable, until I can see my new endocrinologist in May, that is how bad i feel! I am hoping she will be willing to put me on medication...I have never heard of being told you have a disease and there is nothing that can be done, when I know there is, I feel like I have to beg him for medicine?!
    Thank you for your help.

     
    Old 03-13-2007, 02:46 PM   #7
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    Re: Hashimoto's - No treatment

    im a hashis ans most of us hypo ts are in the beggining when thye said i was an underactive thyroider thye tried treayting me with meds but i wasnt yet hypo i guess as i went thyrough the roof but now it is slowly getting better with the meds 80% of us are hashis aftrer all so i hope those meds do help this is why i went hyper i guess is it poss to be hyper for ever with hashis or can it just be in rare cases>???? love from pursiexxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx xxxxxxxxxxxxxxx xxxxxxxxxxxxxx

     
    Old 03-13-2007, 02:58 PM   #8
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    Re: Hashimoto's - No treatment

    all i know is i feel horrible and cannot lose weight no matter what i do....but since i am not considered hypo yet from my bloodwork he will not give me any thyroid medicine. its very depressing as i have always been a good weight. i eat well and take care of myself and i am constantly bloated and overweight. its so frustrating, not to mention my mood swings make me feel like a crazy person.

     
    Old 03-20-2007, 12:43 PM   #9
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    Thumbs up Re: Hashimoto's - No treatment

    Good news--i saw my general practitioner and she put me on 50 mg of Levoxyl. I have an appointment with anew endocrinologist in May, I wil no longer be seeing this one, that put me through so much testing and then diagnosed me and refused to treat me with anything.
    She said I should notice at least some difference after a week on medication.
    thanks for helping.

     
    Old 03-20-2007, 01:04 PM   #10
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    Re: Hashimoto's - No treatment

    Quote:
    Originally Posted by stef814 View Post
    Good news--i saw my general practitioner and she put me on 50 mg of Levoxyl. I have an appointment with anew endocrinologist in May, I wil no longer be seeing this one, that put me through so much testing and then diagnosed me and refused to treat me with anything.
    She said I should notice at least some difference after a week on medication.
    thanks for helping.
    Fantastic I'm so glad you have someone that is willing to treat you.

     
    Old 03-21-2007, 06:28 PM   #11
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    Re: Hashimoto's - No treatment

    I was diagnosed with Hashi's in October and was started on .50 mg of synthroid as well.... I was CONVINCED that I would feel better and that all of the joint pain and stiffness would go away..... Unfortunately, for me the joint pain is still a huge problem, I have now been to a rhuematologist and have had every test run in the book, my endocrinologist said "I don't know why you have joint pain" and when I said I was glad he was going to start me on synthroid because I was looking forward to feeling better, he said "well, you may not feel better",,,, OK, so I will say that the synthroid has definately helped my energy level and brain fog a lot, but I still have horrible joint pain/stiffness and palpitations. I am definately interested in seeing how you respond to the synthroid and if your joint pain persists. I don't have Crohn's, but have IBS and I will say, I have been working on eating a lot more fiber which has helped. I also walk with my dog about an hour per day and work full time, so I have tried everything and nothing is helping the joint pain, and advil KILLS my stomach.. My neck and left shoulde bother me a lot as does my lower back, and my fingers, wrists and elbows, how about you?? let me know, I want to figure out if all of this is from the hashi's or if something else is going on,,,, Lupus??? Hang in there,,, a lot of us are in the same boat!

     
    Old 03-22-2007, 06:37 AM   #12
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    Re: Hashimoto's - No treatment

    Jodie,
    Your other symptoms should get better once your levels are optimal for YOU. If the joint pain, palpitations etc are still there its because you are not on the dose of meds you need. It takes time. It may take a year or more to get your levels optimal for you. If you are still on the same dose you started on you most likely need an increase by now. Most the time when you start meds, you need an increase within a couple of months.

     
    Old 03-22-2007, 12:38 PM   #13
    stef814
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    Re: Hashimoto's - No treatment

    My "general" dr. was so nice to give me a medication in an area where she is obviously not specialized...but i brought her an article I found online of 2 medications Hashi patients usually are prescribed. (and the fact there are several endo's out there who will NOT preseribe them since they are not hypothyroid yet)...she she was helpful. I am on 50 MCG's of Levoxyl for now...I do not see or feel a difference (obviously I have only been on this for 4 days) but I am hoping within time it will help me.
    It definitely does not help having another immune deficiency disease such as Crohns (or IBS)...and I get kidney stones regularly so I have constant back pain in addition to the muscle/joint pain. what a mess!
    I just called my Endocrinologist (the one that did not treat me well and put me through months and months of tests) and told them to release my files. I do not see my new specialist until May, so I am crossing my fingers my medication will somehow help until then. I am counting on this new Dr. to really diagnosis and treat me.

     
    Old 03-22-2007, 12:40 PM   #14
    stef814
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    Re: Hashimoto's - No treatment

    Jodi-I am not sure if levoxyl and synthroid are the same?
    i am very new to this thyroid stuff! i am on levoxyl.

     
    Old 03-22-2007, 04:40 PM   #15
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    Re: Hashimoto's - No treatment

    Stef
    I'm not sure if those are same either, but I will check the boards in about a month and will post to see if you've noticed a difference!

    Dea4, I hope your right, but I am starting to wonder. My TSH started at 3.50, which they don't like to treat because it's not technically high, but in the range where they treat if you are having symptoms. I've had it re-tested twice now, in November it was 0.75 and just a few weeks ago it was 0.84, so I don't think I want it any lower. I know a lot of people feel good when it is around 1.0,,, When I look back at my labs from the past years (I work for the medical group so I have copies of my entire chart), it was actually 3.50 like 5 years ago, but I felt perfectly fine so I'm just so confused..... I'm wondering if the high antibodies are really the reason I feel so bad and I don't think there is anything they can do about those... Well, hopefully, we can get it figured out within the next few months! I see the hematologist next week and my rhuematologist June 1, so I will let you know what they say.

     
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