I have hashimoto's hypothyroid (taking 75 synthroid) and I'm wondering if the disease will eventually kill my entire thyroid? If yes, how long before the antibodies kill my thyroid? Will it take decades to die? Is there anyway to stop the thyroid destruction?
I have the same question. I have gone through RAI and am now hypo. If it is going to eventually kill my thyroid, is going through all this better than having it removed and adjusting to the meds or waiting until it dies and then having it removed. Will it damage other organs while this is happening. I didn't know I had hashimoto and now since I have found out I have lots of questions regarding this. any info will help. Thanks.Linda
I can't stop myself from replying, but I must add a disclaimer that the following is my opinion only and I am often mistaken.
To Auto2005 I say this; IF you have antibodies they will attack the thyroid relentlessly and eventually the thyroid will be destroyed. Depending on your antibody count, it could take decades, and there is nothing you can do to get rid of the antibodies. I have read that Selenium can lower the antibody count (titre), but only by about 5%-10%.
I have Hashimoto's, and the last "official diagnosis" was Hashimoto's Toxicosis. I don't know if that is a specific subset of Hashimoto's, or if it is because I was in an extreme hyper phase at the time the Endo made the pronouncement. With my Hashimoto's I cycle up and down from hyper to hypo and require constant med changes.
I have high antibodies for Hashimoto's. The last (only?) time it was checked the antobodies were in the 1200+ range. This is causing my thyroid to slowly be torn apart and destroyed by the antibodies. The disintigrating tissue is causing unpredictable and uncontrolable releases of excess hormones from time to time.
My First Endo tried to stop that by suppressing my thyroid such that it would not produce ANY hormones, and then put me on hormone replacement. That didn't work.
My second Endo wants to have me do RAI, as that is less invasive than surgery, and involves fewer risks in her opinion.
My General Physician, who has treated me and watched me decline over a year and a half WAS leaning toward RAI, but has now decided I would benefit more from surgery, even though I have only two small nodes and a fairly normal thyroid compared to many memebers here.
To Applecore I say this;
My General Physician has discussed RAI and surgery with me several times. At first he was in agreement with my second Endo. The last conversation I had with him he had changed his mind. He told me RAI may take a year to be effective, it may not work the first time, and while I am waiting for my thyroid to shrivel up and die I would still have the same problems I have right now and the risk of Thyroid Storm was not to be ignored.
That's not what you want to hear, I know, but it is how my GP feels about RAI.
He is trying to find a surgeon who will agree to remove my thyroid, and a different Endo.
I have heart problems now because of the frequent and severe swings in hormone levels, and if things do not change soon I will have significant heart damage. I am also concerned about other organs. So is my GP, which is why he is now trying to get me to an euthroid state as soon as possible. He feels surgery and then RAI is the best option for my situation.
He may not have that same opinion for either one of you. Most doctors would disagree with his opinion regarding my treatment as well. But he knows me better than any other doctor I have seen, and he understands my medical situation better than the specialists at this point.
Just my two cents.
I hope others will comment, as I am looking for more input as well, and I would rather someone let me know if I have posted erroneous information, because it wouldn't be the first time that has happened.
I have Hashi's and my current Endo wants to remove my Thyroid. This will render you completely "Euthyroid" and we will be totally dependent on Synthroid (and other Synthroid-like meds).
I'm currently seeking another opinion on Friday 11/9 because I thought this sounded too extreme. But who knows - maybe that's the "thing" to do!
From what I understand - the body will continue to destroy the Thyroid until it can no longer create hormones on it's own. Most Hashi's folks are on the Hypo side. However - occasionally the Thyroid will rally and fight back and create some hormones thus putting the body into Hyper. It will cycle like this until the Thyroid becomes non-functional.
I've read that being on a low dose of Synthroid will slow the process down - and as AR-10 commented - Selenium will lower the antibody count. (However - too much Selenium will cause your HAIR to fall out!!! I stopped taking it a couple of days ago because of my current hair loss complaints. )
It must be a cross-opinion of Endo's as to whether it is easier to go ahead and remove the Thyroid so you can be regulated on Synthroid or keep the Thyroid and put up with the constant changes in medication.
It seems each person's Thyroid Disease is as unique as they are!! If you have the availability of other Endo's - check around and get other opinions. I'm checking just to see if this is something that is "sound" and if the treatment I have received has been appropriate. Hopefully she can offer new insights or confirm what has been done.
After reading all of these comments, I feel that since I have already had the RAI treatment and seemingly am getting better that I will trust the course that my endo is taking and wait it out. It was encouraging to hear the comment about taking a year as that is what I felt the Lord said to me to give Him a year to straighten me out. I know many people don't talk about God this way but He is the one who keeps me on course and it usually always lines up with the doctors. My doctor is waiting until after the holidays to try increasing the levothyroxin (generic) to one day 37.5 and one day 50. I am supersensitive to the meds and my tsh is still too high 6.7 and I believe he is hoping it will come down on the 37.5. I can't tolerate the 50 everyday and the 25 is too low. He doesn't want to throw me back into the anxiety stage so we are waiting. My biggest concern now is weight gain. I hate it. If I wouldn't eat at all maybe I wouldn't gain. I am starting an excerise program. I always used to excerise but didn't feel good enough during the last 6 months to do anything but exist. I am feeling better but still extremely weak in arms and legs and brain fog and horrible indigestion on the days that I don't feel good (I think those days my nodules are producing extra hormone). Thanks for your help as always. Linda
always enjoy your comments. One more thing the thing that was supposed to die is the nodules and they are still producing. Unless I am not understanding correctly my thyroid is ok, I think. I hope they will die and let me alone. Always humor in everything huh? Linda
If the hashimoto's is killing the thyroid, why remove it before it completely dead, you'll still have the hashimotos? Or, will removal reduce some symptoms? Isn't it worth keeping your thyroid for whatever hormones it's able to produce? I'm too new to this to really know.
I'm on Synthroid now. For nine months I was also on Methimazole. That is a drug that suppresses the thyroid function. If you take enough it will shut the thyroid down as long as you take the drug. It will also ruin your liver.
The most effective drug treatment for MY form of Hashimoto's is supression and replacement, but it is a short term option, if you want to keep your liver.
RAI is a better alternative, but two Endo's have messed me around to the point that RAI alone is no longer acceptable. My overall health is compromised.
I want surgery and I want it as soon as possible. I explained above how RAI works, and another year or two of this is not acceptable. I am dibilitated and have not worked in six weeks. My GP says another three to six months minimum. If I take the express route.
An organ that is completely shut off is not doing me any good anyway. The damage it is doing as it disintgrates is not acceptable. The damage to my body from my hormones being out of balance and to a different degree every few days cannot continue.
I can't wait ten years to feel better.
I can't wait two years to feel better.
I also donot know the answers to your questions. I just recently found out that I had hashimoto. It would seem to me that if you remove the organ that is causing the problem you remove the problem. I am sure somebody here has had this happen. If you are reading this please answer this question if you can. Do you still have hashimoto if you have your thyroid removed.
It seems to me that they would have removed your thyroid long ago. Why are they waiting? Is there something else causing some of your symptoms.
I am going to a food allergist to see if some of my problems are being caused by food allergy. I sure will be praying that you will get real permanent relief soon.
I just want you all to know I read all the threads and feel really bad for all of you .. Hashi's is not pleasant and my thoughts go out to all of you and decisions on treatment and ultimate decisions in treatment are not easy to make and vary from person to person! I never knew about Hashi's until joining this board last year ..
A total thyroidectomy only removes about 70%-80% of the gland.
The thyroid grows around the wind pipe and vocal cords. There are parathyroid glands attached to the top of each lobe of the thyroid, and you want to keep them.
Part of the thyroid is left intact to save the parathyroid glands, and some tissue is left around the vocal cords to avoid damaging them or cutting nerves.
Total removal of the gland is not possible without harming the patient. That is why people who have thyroid cancer usually have surgery and then follow that with RAI to further reduce the amount of live tissue.
The difference between the two methods of treatment is the time it takes to reduce the size of the living organ.
We will always have Hashimoto's. If the gland is completely dead the antibodies are still produced by our immune system. The disease does not ever go away. It is a matter of controlling symptoms, and limiting damage to our bodies. Finding the right dose of the correct medication to keep our hormone levels aproximately where our body is accustomed to having them.
I'm waiting for my doctor to find me new doctors. Waiting, and waiting...
That makes sense then if they don't remove all your thyroid. I didn't know the difference between the parathyroid glands and the thyroid. Thanks for the explanation. I definitely will wait on what the doctor is doing. It sure helps to know something.
Chitchatnine - I hadn't heard of it either and evidently I have had it for years and nobody told me the name. I did know that antibodies were attacking my thyroid and that was the cause of the problems but that was all. linda
This is a very old thread and I doubt that you will get a response from Applecore. If you want, we will be glad to give you our opinion about your thyroid status if you will post your thyroid related test results and reference ranges shown on the lab report. Also, please tell us about any symptoms you have.
Hello everyone! I am in the beginning stages of being diagnosed for Hashimoto's disease, I have been back and forth to the doctor all week having blood work done, vitals checked ,etc. today I had an appointment at the hospital to have a Intake Thyroid Screening, that consisted of me swallowing an Iodine pill and having a Gamma Camera screening done, that I have been told lets out Gamma rays. I have been feeling really tired, very week, and ready to find answers! I must say that I am glad to know that I am not going crazy!! I had symptoms that I have not read any where on the internet that described how horrible I have really felt! lol,,,, I had a bad itching spell that drove me nuts!!!!!! lol,,, this one symptom alone is what led me to see the doctor!! lol,,, I have never felt that way ever before in my life!!! I have a great doctor so far, has taken great care of me, my lab report is showing an enlarged thyroid and I have a very high heart rate along with very high hormone levels. When I went to go see my doctor yesterday he told me he thinks I have Hoshimoto's,,,, (and I didn't know what the heck he was talking about!!) LOL,,,, (My eyes got so big when he said that I didn't know what to think! lol,,) the name sounds much scarier than the actual life affect! With that being said I don't mean that having this disease is going to be any cake walk! I am glad to see that I am not alone, I have enjoyed reading everyone and there comments. If anyone wants to leave me any encouraging words please feel free!!
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