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Post by freecharlie on Jul 20, 2016 4:22:11 GMT
Update
I've decided to get rid of the thyroid. It seems hypothyroidism is easier a day less risky to treat than hyper.
Fingers crossed.
Original post
I got to go to a new endocrinologist today. She is much better than my old one as she is actually on top of things. She even told me that the medication I've been taking for TWO years has some side effects and that if I had a high fever, severe sore throat, or vomiting that I had to go for emergency blood work ASAP. I NEVER knew that. My old endo never old me that.
So since my old endo screwed with my meds and sent me into hypothyroid instead of hyper with meds, I gained 30 pounds and was tired, he dropped my dose, but apparently didn't note it. Then he dropped it again. Then he raised it.
According to his notes I haven't had a normal thyroid test for a year, but he didn't raise it until about 3 months ago.
New endo thinks that I should just get rid of thyroid as it isn't normal and the meds have the serious side effects, but that befoe we can move forward, she wants to test it again to make sure he isn't radiating a healthy-ish thyroid.
So I do the bloodwork in anticipation of getting rid of the thryroid next week so that it is all done before I go back on contract.
Just got the results and EVERY test is in the normal range. Now I don't know what our next step is. Sigh
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Nink
Pearl Clutcher
Posts: 4,947
Location: North Idaho
Jul 1, 2014 23:30:44 GMT
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Post by Nink on Jul 20, 2016 5:10:22 GMT
Oh gosh. How frustrating. I'm so sorry, I'm hypo and it is a constant struggle. I've gained 60lbs and every single joint in my body just hurts. Hang in there, sending good thoughts your way that this new doc gets it figured out for you soon.
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Post by pelirroja on Jul 20, 2016 10:22:00 GMT
If you obliterate your thyroid, you will still need to take meds. If the new tests are coming back normal, I'd wait and give the new endo a chance to get things on track. Killing your thyroid doesn't solve the problem but it will give you a new/different set of issues and you'll still be on meds. Destructing the thyroid should only be a last resort and i don't think you've reached that level. Wait and see. And keep checking, checking, checking.
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eastcoastpea
Prolific Pea
Posts: 9,252
Jun 27, 2014 13:05:28 GMT
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Post by eastcoastpea on Jul 20, 2016 10:28:21 GMT
Hugs to you. That really sucks that your previous doctor wasn't giving you the proper care. I hope your new doctor gets you back on track quickly.
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Post by dewryce on Jul 20, 2016 10:30:33 GMT
What a pain! One thing to consider, just because the numbers are within normal limits doesn't mean they are good for YOU. You can still have symptoms, especially towards the outside ranges. What feels good for one person won't necessarily feel good for another. Hope your new doctor helps.
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gsquaredmom
Pearl Clutcher
Posts: 4,078
Jun 26, 2014 17:43:22 GMT
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Post by gsquaredmom on Jul 20, 2016 10:34:23 GMT
You can't undo the destruction. The plan needs to be reassessed. Discuss this with your doctor and keep asking for answers.
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Post by anonrefugee on Jul 20, 2016 10:45:30 GMT
My instinct is to wait and see what develops. Having a negative experience with one doc would make me take it slow with the next one. I wouldn't want to make a permanent decision without knowing them well, unless it was an emergency. Hugs to you, thyroid issues are rough and your old doc made it tougher! ETA gsquaredmom posted as I was typing. Do you have a general practioner or internist you can talk with and review recommendations?
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Post by ExpatBackHome on Jul 20, 2016 10:51:53 GMT
My husband took medication for his thyroid for a few years. His thyroid is now functioning normally and no longer takes medication. He has to get it checked once a year to make sure nothing changes. I would only zap the thyroid as a last resort. My understanding is that once it's zapped, you'll probably still have to take medication.
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Deleted
Posts: 0
May 14, 2024 7:20:15 GMT
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Post by Deleted on Jul 20, 2016 12:41:20 GMT
Yikes that is *frustrating*. And what is with the crappy care from medical professionals that the Peas are seeming to encounter so frequently recently?
{{{ hugs }}}
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Deleted
Posts: 0
May 14, 2024 7:20:15 GMT
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Post by Deleted on Jul 20, 2016 13:04:04 GMT
My husband took medication for his thyroid for a few years. His thyroid is now functioning normally and no longer takes medication. He has to get it checked once a year to make sure nothing changes. I would only zap the thyroid as a last resort. My understanding is that once it's zapped, you'll probably still have to take medication. I never knew this was a possibility. I thought once your were on medication it was for life. I guess you learn something new every day! I started thyroid meds last year and my levels are normal, but I haven't been feeling right, so we're investigating other diseases. Thankfully, we ruled out other auto-immune diseases but we're back at square one. ETA: OP, I hope you get some answers and feel better soon. It's so frustrating when things are wrong with your body, but you don't know what or how to fix it!
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Post by anonrefugee on Jul 20, 2016 15:17:16 GMT
My husband took medication for his thyroid for a few years. His thyroid is now functioning normally and no longer takes medication. He has to get it checked once a year to make sure nothing changes. I would only zap the thyroid as a last resort. My understanding is that once it's zapped, you'll probably still have to take medication. Do you mind sharing what condition and what medicine? I know I'm dreaming... LOL I guess this is how people get into "trouble" and stop their anti-psychotic meds, isn't it? Before anyone says it- I know is not a laughing matter! But I've taken them (thyroid meds) for a few years and wonder...
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Post by freecharlie on Jul 20, 2016 15:40:12 GMT
My husband took medication for his thyroid for a few years. His thyroid is now functioning normally and no longer takes medication. He has to get it checked once a year to make sure nothing changes. I would only zap the thyroid as a last resort. My understanding is that once it's zapped, you'll probably still have to take medication. Do you mind sharing what condition and what medicine? I know I'm dreaming... LOL I guess this is how people get into "trouble" and stop their anti-psychotic meds, isn't it? Before anyone says it- I know is not a laughing matter! But I've taken them (thyroid meds) for a few years and wonder... I take the methamazole (sp) for hyper and it can cause remission, but not always. It is my understanding that if I have the thing radiated, I would take meds for the rest of my life to replace.
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Post by freecharlie on Jul 20, 2016 16:03:16 GMT
My husband took medication for his thyroid for a few years. His thyroid is now functioning normally and no longer takes medication. He has to get it checked once a year to make sure nothing changes. I would only zap the thyroid as a last resort. My understanding is that once it's zapped, you'll probably still have to take medication. Do you mind sharing what condition and what medicine? I know I'm dreaming... LOL I guess this is how people get into "trouble" and stop their anti-psychotic meds, isn't it? Before anyone says it- I know is not a laughing matter! But I've taken them (thyroid meds) for a few years and wonder... I take the methamazole (sp) for hyper and it can cause remission, but not always. It is my understanding that if I have the thing radiated, I would take meds for the rest of my life to replace.
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Post by ExpatBackHome on Jul 20, 2016 20:45:10 GMT
My husband took medication for his thyroid for a few years. His thyroid is now functioning normally and no longer takes medication. He has to get it checked once a year to make sure nothing changes. I would only zap the thyroid as a last resort. My understanding is that once it's zapped, you'll probably still have to take medication. Do you mind sharing what condition and what medicine? I know I'm dreaming... LOL I guess this is how people get into "trouble" and stop their anti-psychotic meds, isn't it? Before anyone says it- I know is not a laughing matter! But I've taken them (thyroid meds) for a few years and wonder... He was hyperthyroid. I'm not sure which medicine he took since it's been a while. Good Luck!
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Post by chichi on Jul 20, 2016 20:56:19 GMT
I had thyroid cancer so my thyroid had to be removed I would give anything to have my own thyroid gland producing my own thyroid hormone again I was hypothyroid post pregnancy and was on synthroid until the cancer was discovered I wouldn't just remove my thyroid with out very careful consideration Many Drs will tell you after a total thyroidectomy all you need to do is take synthroid and you'll be fine That was not my experience. And not the experience of many people who had to have their thyroid a removed. It very difficult to find the right medication dose to replace what your own thyroid can do
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Post by mom on Jul 20, 2016 22:18:39 GMT
Ugh. Sounds like getting a new dr was a good idea.
Personally, I would just sit back and see what happens.
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Post by birukitty on Jul 21, 2016 0:26:19 GMT
If you haven't already I would recommend checking out this website www.stopthethryoidmadness.com and seriously considering ordering the book by the same name from Amazon. The best thing you can do in my opinion is educate yourself about thyroid issues-hypothyroid and hyperthyroid. Once you are able to advocate for yourself by having the knowledge of knowing what is going on within your own body, what questions to ask the doctors and when to know they are not treating your problems correctly you will be on your way to better health. I have hypothyroid and have been dealing with a complex case of it for many years. I have been through several doctors but finally found an excellent one who knows what he is doing. He's called an Integrative Medicine doctor. He's a board certified internist who also practices alternative therapies. He also diagnosed me with adrenal insufficiency which often goes hand in hand with thyroid problems. He does 5 thyroid blood tests not just TSH. He's so much in demand that he doesn't have to take insurance so he doesn't. I have to pay $150.00 out of pocket to see him, but he's worth it. I do get reimbursed a little from my insurance company. I've had the book, "Stop the Thyroid Madness" for a few years now. I take it with me when I go see my doctor. Another thing I like about this doctor is that he listens to me and answers my questions. As many as I have. Personally I don't think you should get rid of your thyroid. What meds are you taking that have serious side effects? The best medication for most people is what is called dissected thyroid-not the synthetic versions. A popular one is Armour Thyroid. I've been taking it for years with no side effects. There is a newer one on the market but I don't know what it's called. Removing your thyroid is a very drastic step. I wouldn't do that unless it was diseased. If I were you I'd get a second opinion I can tell you that I've been through several endos trying to find a good doctor. They were worse than the primary care doctors. Some were really bad. One told me when I complained to her that my hands were always freezing "Well are they turning blue? If they aren't turning blue then you are perfectly fine". Needless to say I never went back to her. Another Pea posted that the endo she took her son to said he couldn't possibly have a thyroid problem because he (her son) was so tall. Once they found the right doctor he diagnosed her son with hypothyroid. So you do have to be careful. That's why getting the book, reading and educating yourself is so important. Best of luck to you. If you have any more questions post here. There are a lot of thyroid Peas here. Debbie in MD.
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eleezybeth
Pearl Clutcher
Posts: 2,784
Jun 28, 2014 20:42:01 GMT
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Post by eleezybeth on Jul 21, 2016 0:37:15 GMT
Wait- what? There is medicine for hyper?! Now, I know I should know that but I was told the irradiated iodine was my only option. This was a long time ago so perhaps I'm not remembering it correctly but I was given one option.
I wish ** probably my biggest wish** is to have just one encounter with a competent endo. Just once...
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Deleted
Posts: 0
May 14, 2024 7:20:15 GMT
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Post by Deleted on Jul 21, 2016 1:55:45 GMT
After reading this thread, I'm worried that I haven't been forwarded to an endocronologist. My PCP diagnosed me with hypothryoidism and my mom and 2 sisters have Hashimoto's Disease (which is why my PCP looked for it in my bloodwork). She put me on synthyroid and is watching it. I'm learning a lot here......
freecharlie: I'm sorry about your incompetent doctor. That's inexcusable. I hope you could get it figured out! Between my hysterectomy in 2012 and my thyroid issues, I'm losing weight. I'm watching out for extreme weight gain or weight loss.
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Post by salem on Jul 21, 2016 2:49:56 GMT
Do you mind sharing what condition and what medicine? I know I'm dreaming... LOL I guess this is how people get into "trouble" and stop their anti-psychotic meds, isn't it? Before anyone says it- I know is not a laughing matter! But I've taken them (thyroid meds) for a few years and wonder... I take the methamazole (sp) for hyper and it can cause remission, but not always. It is my understanding that if I have the thing radiated, I would take meds for the rest of my life to replace. I take methimazole for hyper too. I'm on the lowest dose and have been for a few years. I just had a conversation with my Dr. Last week about possibly coming off of it. She said most people don't take it for as long as I have and my numbers have been normal for a very long time now. I didn't know remission was possible, but we are going to do some bloodwork and then try to stop.
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Post by Merge on Jul 21, 2016 2:54:05 GMT
I'm sorry. I don't have any helpful advice, but I'm crossing my fingers that your doc gets it all figured out, and soon.
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Post by scrapmaven on Jul 21, 2016 3:07:25 GMT
What did your new doctor say about your normal results? Would that change her recommendations? That would play a role in my decision. How confusing for you.
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Post by freecharlie on Jul 24, 2016 19:18:51 GMT
I've decided to get rid of the thyroid. It seems hypothyroidism is easier a day less risky to treat than hyper.
Fingers crossed.
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Post by Eddie-n-Harley on Jul 24, 2016 21:49:47 GMT
I've decided to get rid of the thyroid. It seems hypothyroidism is easier a day less risky to treat than hyper. Fingers crossed. Lots of luck for successful surgery and treatment!
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