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Old 09-23-2012, 03:59 PM   #1
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Need info from people who CANNOT take thyroid medication

Well this has been a journey that is for sure. At this point it has been determined that my body is rejecting thyroid medication. I have been on Synthroid (allergic), Natru (sp?) Thyroid, Armour, and one other 'natural pig' thyroid medication, T3 as well as alone and combo. None of them work. As soon as I take even half of the lowest dose possible my tongue starts burning and tingling, my throat closes up and I feel like a MAC truck has run me over. So I was put on a medrol dose pack 4 days ago to 'dampen down ' the immune system. Doctor thinks it is going haywire and that my body is having an allergic reaction or rejecting the medicine. I must say off the meds my brain is not foggy and I am not tired like I was but, I notice my thyroid feels really warm sometimes. Still using acupuncture and at this point it is the only thing that has made a significant difference to me. I would really like to hear from people who have not been able to tolerate thyroid medications. Also, the doctor thinks it may be adrenal and that would have to be balanced otherwise the thyroid medicine will only make me worse. Over 2 years of hell, no end in sight and my doctor says to 'hang in there' lol well I have no choice.

 
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Old 09-23-2012, 04:07 PM   #2
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Re: Need info from people who CANNOT take thyroid medication

Tirosint - hypoallergenic T4. Try it!

 
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Old 09-23-2012, 04:41 PM   #3
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Re: Need info from people who CANNOT take thyroid medication

Tried it. Bad reaction. I swear I have tried everything. I don't know what to think. They told me for 2 years I HAD to take meds due to RAI treatment 30 years ago and they said I was hypo. For 2 years I have been consistently telling them something wasn't right, that I felt terrible. This has been living hell. Now I still have burning/tingly tongue, my thyroid feels warm and throbby (made that word up!) it's feeling a little tight and I am worried I have done damage to my thyroid gland from taking meds for 2 years that I was allergic to or, my body is rejecting but no-one would listen. Or maybe they misdiagnosed the thyroid condition. I don't know but I need to know soon.

 
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Old 09-23-2012, 04:53 PM   #4
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Re: Need info from people who CANNOT take thyroid medication

Are you seeing good doctors? What about at Emory in Atlanta?

I cannot tolerate any T3 (Cytomel or NDT), but am improving on Synthroid. I took 50 Synthroid and felt TERRIBLE (and became so bloated and fat due to fluctuating hormones), but when I upped it to 62.5, I FELT BETTER.

My TSH before was 4.70. That's my story. I don't know. Synthroid was the only thing I could try. Have you had allergy tests? Maybe try a compounding pharmacy and get hypoallergenic T4? Not sure, sorry! I know it is frustrating. I have had some people tell me I shoudl get on HC for my adrenals. I never did and I know others who regret the decision. Just my two cents.

Hang in there! You will figure it out. Good luck!

 
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Old 09-23-2012, 04:55 PM   #5
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Re: Need info from people who CANNOT take thyroid medication

Are you seeing good doctors? What about at Emory in Atlanta?

I cannot tolerate any T3 (Cytomel or NDT), but am improving on Synthroid. I took 50 Synthroid and felt TERRIBLE (and became so bloated and fat due to fluctuating hormones), but when I upped it to 62.5, I FELT BETTER.

My TSH before was 4.70. That's my story. I don't know. Synthroid was the only thing I could try. Have you had allergy tests? Maybe try a compounding pharmacy and get hypoallergenic T4? Not sure, sorry! I know it is frustrating. I have had some people tell me I shoudl get on HC for my adrenals. I never did and I know others who regret the decision. Just my two cents.

Hang in there! You will figure it out. Good luck!

 
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Old 09-23-2012, 04:56 PM   #6
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Re: Need info from people who CANNOT take thyroid medication

Are you seeing good doctors? What about at Emory in Atlanta?

I cannot tolerate any T3 (Cytomel or NDT), but am improving on Synthroid. I took 50 Synthroid and felt TERRIBLE (and became so bloated and fat due to fluctuating hormones), but when I upped it to 62.5, I FELT BETTER.

My TSH before was 4.70. That's my story. I don't know. Synthroid was the only thing I could try that worked. Have you had allergy tests? Maybe try a compounding pharmacy and get hypoallergenic T4? Not sure, sorry! I know it is frustrating. I have had some people tell me I shoudl get on HC for my adrenals. I never did and I know others who regret the decision. Just my two cents.

Hang in there! You will figure it out. Good luck!

 
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Old 09-24-2012, 09:19 AM   #7
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Re: Need info from people who CANNOT take thyroid medication

Yes, I have been to Emory. They were not much help at all. My husband was stunned by the way they treated me. Clearly I was still having problems when I went there, I was on Synthroid at the time and having heart pounding, throat closing up, my tongue was burning/tingling and I couldn't sleep. My hair was falling out (still is) I was gaining weight like crazy and I had been on it a good year or more. They tested my TSH and said it's not your thryoid and sent me to an ENT.

 
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Old 09-24-2012, 09:26 AM   #8
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Re: Need info from people who CANNOT take thyroid medication

Yes, I have been to Emory. They were not much help at all. My husband was stunned by the way they treated me. Clearly I was still having problems when I went there, I was on Synthroid at the time and having heart pounding, throat closing up, my tongue was burning/tingling and I couldn't sleep. My hair was falling out (still is) I was gaining weight like crazy and I had been on it a good year or more. They tested my TSH and said it's not your thyroid and sent me to an ENT. Who promptly told me my throat was fine. It has been exhausting trying to find a doctor who will find what the problem is. Emory never listened, they dismissed me. My husband witnessed the whole exchange on one of my visits and it was at least validating for me to know it really was happening and, he got to see what I have been going through for over 2 years now. For some reason my body is rejecting the medication. I am looking everywhere for information myself because it seems you have to. Could be low ferritin (iron) that doesn't allow me process the medication or, high histimine levels. Could be, could be, could be. No answers.

 
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Old 09-24-2012, 06:21 PM   #9
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Re: Need info from people who CANNOT take thyroid medication

im having an awful time, started out with synthroid, bad reaction to that, then armour, bad reaction, then tirosint, again bad, and then cytomel, same thing, then again tried a lower dose of tirosint, im sorry i took it, harder to breath again, wheezing terrible, very scared here

 
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Old 09-24-2012, 06:43 PM   #10
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Re: Need info from people who CANNOT take thyroid medication

I have not heard of reactions like this but it definitely sounds like an allergic reaction/immune response. As for the warm, throbby sensation in your gland, do you have autoimmune (hashimoto's) thyroiditis with positive thyroid antibodies? Inflammation in the gland would make it feel tight, tender and possibly warm.You could have so many antibodies to T4 in your system, that you are reacting even to the synthetic stuff. What does your TSH, T4 and T3 run? Maybe the RAI didn't work? Something to think about-many people are allergic to the dyes used to color pills. Yellow and red dyes particularly or those with tartrazine. Maybe the Drs have assumed because you had RAI 30 years ago, you are hypothyroid (logical). But have they tested your blood to prove that? Any additional info may help us help you! Any ultrasound done?

 
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Old 09-24-2012, 08:11 PM   #11
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Re: Need info from people who CANNOT take thyroid medication

Yes, I have had test to see if it is Hashimoto's and a thyroid scan. I have 2 small nodules that they determined were not anything to worry about. Last week they put me on a Medrol dose pack to "damper down" the immune system b/c the doctor said he thought my immune system was reacting to the latest, one time, half a pill of the Nature Thyroid lowest dose! It relieved my symptoms for a few days but then when I started to taper off they starting coming back. My husband has been out of town for the last 2 weeks and I just broke down weeping on the phone to him tonight. I don't know how much longer I can take this not knowing what is wrong. I have been driving over an hour and a half to see this new doctor who came highly recommended, paid out of pocket a lot money my insurance will not reimburse in hopes of getting an answer. Now he says to go to an allergy doctor. My throat is closed up, my ears are ringing and throbbing, my tongue is burning constantly, I have trouble swallowing. I haven't been on meds in close to 3 weeks now so I am sure that is part of the problem but as soon as I take them I feel worse. I have no appetite, no get up and go for things I enjoy doing. I am so tired of this. You can't help but worry what if it's thyroid cancer and they are dicking around while I just get sicker? Each doctor sends me to a new one. If they had to go through this experience I think you would see a huge difference in thyroid care in this country. It is shameful.

 
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Old 09-24-2012, 08:27 PM   #12
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Re: Need info from people who CANNOT take thyroid medication

Has anyone discussed biopsying the nodules? Is your gland enlarged? Have you tried antihistamines for the allergic symptoms? How long has it been since your scan was done? Are you with an endo or a GP? An endo should definitely be treating you-a good one!

 
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Old 09-24-2012, 10:17 PM   #13
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Re: Need info from people who CANNOT take thyroid medication

i have 6 of those nodules they say not to worry about right now

sounds like u feel like i do, i dont want to do anything anymore, i sit home and suffer

im soooo tired, i can sleep n sleep and i feel horrible when i wake

im soooo weak, i dont enjoy anything anymore

i am seeing an endo, the best in this area they say

i sat n waited all summer to get in to see this specialist, hoping the whole time that he would fix me

i can barely find the strength to go to my appointments and i dread them

i am soooo out of breath when i take any of these thyroid meds and that lingers after i stop taking them, i have been using my husbands oxygen..

they wont prescribe me oxygen unless i go get special tests done for that and i cant bare that

 
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Old 09-25-2012, 05:33 AM   #14
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Re: Need info from people who CANNOT take thyroid medication

Quote:
Originally Posted by ladybud View Post
Has anyone discussed biopsying the nodules? Is your gland enlarged? Have you tried antihistamines for the allergic symptoms? How long has it been since your scan was done? Are you with an endo or a GP? An endo should definitely be treating you-a good one!
No, no discussion yet on a biopsy. I started taking Allegra a few days ago. The scan was earlier this year. My GP has done more for me than any thyroid specialist! I am going back to her today to see what we can do from here. The weird part is if I take the meds my throat feels great but, then my fatigue is worse and I feel horrible. I will post back and let you know how it went today.
I think we need another ultra sound to see what's going on in there.

 
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Old 03-18-2013, 08:39 AM   #15
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Re: Need info from people who CANNOT take thyroid medication

March 2013 Still cannot tolerate thyroid medication even though my last TSH level was over 9.0! Last thyroid scan indicated my thyroid was enlarged with increased blood flow indicative of thyroiditis. No nodules found, they have disappeared. I have tried every medicine available to me. I have even tried low doses of Cortef with thyroid medication. Now I wake up with a cold sensation behind my eyes and forehead, heart pounding, tingling sensations in left side of face and body, my left eye lid twitches constantly, and my tongue feels the same tingling sort of burning sensation and my throat feels closed up. I am so tired of feeling this way. Still gaining weight mostly in my stomach, no appetite. I don't even know where to go anymore. In all my reading it points to adrenal problems that are throwing me off. But I also read recently that it could be an autoimmune issue with the adrenals as well. I have Rheumatoid Arthritis so that could be it. Any suggestions from anyone on what else it might be? It is so frustrating to not get any better and the years just keep slipping by.

 
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