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:(Hello everyone,
It has been a while since I have been on and I hope all are doing well. you are in my prayers. Anyway, I had a total thyroidectomy last year due to the sever Hashimotos I had from SLE. I have been on the same dose of Levothyroxine since and my bloods were only checked once and were "ok". Well, I have been feeling like poo, gaining weight, can't get warm, swelling all over and feel like ther is something so wrong......went to the doc and my TSH level was 61.14. He said it was the worst case he has seen in all 25 years of his practice and immediately changed my meds and upped them. TSH range should be .3 to 2.0. It has been about 3 weeks and I still feel like things are not working. Please understand that through all 22 years of having this disease and others, I have a very detailed history and study all of the time about the processes of each disease. Sometimes I wonder if I come off too knowing and try to "help" the docs get me on the right track. In all of this, I know when things are wrong and when they are right. This TSH can lead to all kinds of problems internally if we are not careful, and yet he says to just take the meds and don't worry. Well. I am worried. My body temp is below normal, I feel like I am am "starved for air and my heart feels funny, but he said my body functions were off but not to worry. Ok, so I'll try not to but if any one here has been through this or has any advice, I would really appreciate it. Thank you all for being here and supporting each other. It is a blessing.
Love
Jules
 

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My partner is on synthroid. She needs to take synthroid and NOT a generic brand of synthroid or it doesn't work properly for her. One of the woman I work with recently had the same issue also and had to be taken off a generic brand and given synthroid. Some people say there is no difference but nurses I work with say there is and my partner's doctor told her never to take a generic form of synthroid. Just wanted to let you know this piece. Hope you feel better soon.
 

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My gosh Jules :sad:

I dont blame you for being worried. That is an incredible TSH level. I would be worried too. Although I am hypothyroid as well my levels were never anywhere near that. How much did he up your meds and when are you getting those levels checked again?

Im sure you have researched all of this and know it can lead to severe drop in body temperature and seizures if left untreated. What is your body temperature at the moment? Usually its not considered dangerously low unless its less than 35 C.

I dont know what to tell you Jules except take your temperature regularly, make sure you get your levels tested again very soon and make sure that they are getting back to normal range. Did your doctor say how long it would take the meds to work?

I know none of us fancy a trip to the ER but to be honest if I were you I would go there for an evaluation, especially as you are having trouble breathing and your heart is feeling funny.

I do hope you can get this controlled very soon Jules and that someone else who has more experience of this will come along soon. Please let us know how you are.

Much love
Joan:rose:
 

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Hi Jules,

I'm afraid I can't offer any advice. Like Joan, my levels have never gone anywhere near that, especially as thyroid levels are routinely checked here in Belgium. My Mum had extraordinarily high TSH when they discovered she was hypothyroid. It had never been checked despite how bad she had been feeling for years and when the doc that checked it found out he told her that by rights she should be bed ridden if not in a coma :( So yes, it does slow your body down and you do need to make sure that treatment works fast.

sending plenty of hugs to you
:grouphug2:

Katharine
 

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Good for you for being knowledgable! I think I would be pushing the doctor to set a date to test again. Obviously he waited too long to do maintenance testing after the operation. Maybe you could bring that up in a nice way? "With things having gotten so bad between testing last year, I'm very concerned that we stay on top of things this year. Could you please schedule another "maintenance" test soon?" Or something. Of course, I can never think of something that nice when I'm the one under the gun. I'm just - "I need a test, do it." :lol:

Hope you are feeling better soon!
 

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Hi Jules,
when i was diagnosed with hashimotos my tsh was 49 and i thought that was bad, goodgrief, poor you!!!
I felt very much the same as you have said, had very low body temperature even when i felt warm couldn,t breath properly, very cold, shivery, everything really you've said, i felt like i was going to die, really.I know it sounds bad and you must be worried because you feel so unwell but they will get it sorted with drugs and any internal effects from high tsh usually only occur if thyroid disease or problems have gone undetected for a long time.
I would just try to take things easy on yourself and keep in touch with your doc to let them know how you are feeling, that way they can be aware if you have any abnormal symptoms. Not that how you feel now is normal. :(
I really feel for you as i know you must be feeling so weak and awful, just try to hang on in there untill the meds start working.
It took me about 8 weeks for my tsh to return to normal and about 10 weeks before i started to feel better, it will take time because its got so bad.
:there: :hugbetter:

Wish you all the best hope you start to feel better soon.

Cassie
 
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