My endocrinologist wants to take me off my meds!
MCLA4mom
Posts: 219 Member
Hi, I thought I would throw this out to the group. I am hypothyroid and I have been taking synthroid for about 17 years. I STRUGGLED to lose weight since I was diagnosed. A while back I was able to lose 75lbs and I have kept it off for over a year now. I recently went to my endocrinologist and he is thrilled. He even mentioned taking me off my medication! I was surprised. I didn't think that Hashimotos disease was something that could be cured. I was told that I had to stay on this medication for the rest of my life. I am scared to death to even try. Honestly, it was such a hard fought battle to lose weight that I am not willing to risk the possibility of gaining weight. He mentioned that sometimes people control it by diet. Has anyone here ever gone off their thyroid meds after a long time? What were your results?
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I would ask him to re-run ALL of your labs, including anti-bodies, etc. If your labs are normal or in the normal range, why would he take you off and risk you going back hypo-thyroid? I was also told by my GP and my endo that I would be on thyroid meds forever, regardless of how much weight I lost, etc. I don't think that Hashi's, which as you know is an auto-immune disease, can be controlled with diet. I am not a Dr. though so what do I know. If he insists on taking you off, I would seek the advice of at least one other Dr. that is experienced with Hashis and thyroid issues.0
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What dose of meds are you currently on? I agree that you should have all of your labs re-run to see where you're at with meds but if you're on a super low dose, it might actually make sense. When you're on meds, your thyroid gets lazy and stops working altogether. If you're on a low enough dose though, and you've lost a bunch of weight, your thyroid might want to try to work again. It's all trial and error with Hashi's. If you have Hashi's, you'll always have antibodies - those don't really matter though if your T4 and T3 are in the right range.0
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OK, my first reaction was - Don't do it!!!! This is because I had an endo do the same to me and it was AWFUL. It literally took me 3 years to get back on track after that disaster. It was one of the worst experiences of my life. His reasoning was that I had a suppressed TSH w/normal T3 & T4 labs at the time. I went downhill so gradually that I didn't even notice it till months later when I was barely functioning anymore. Hypothyroidism is NOT caused by being overweight. Being hypo CAUSES you to be overweight (poor diet nonwithstanding of course!) Also, if your labs look good while you are taking the meds doesn't this mean that they look good BECAUSE you are taking the meds?
Now, with that said - if somehow you have found a way to support and stimulate your thyroid naturally or if your thyroid somehow has recovered then wow wouldn't it be great to let it do it's thing! This is actually my goal in fact. Trying to support/heal my thyroid because no doctor has been able to pinpoint a cause for my being hypo... nuff about me though.
Good luck in your decision! If you do go off of it maybe you will be smarter than me about it and get your blood work checked every few weeks and keep a daily "medical journal" to monitor how you are doing.
Best Wishes! Post back sometime on how you are doing!0 -
What dose of meds are you currently on? I agree that you should have all of your labs re-run to see where you're at with meds but if you're on a super low dose, it might actually make sense. When you're on meds, your thyroid gets lazy and stops working altogether. If you're on a low enough dose though, and you've lost a bunch of weight, your thyroid might want to try to work again. It's all trial and error with Hashi's. If you have Hashi's, you'll always have antibodies - those don't really matter though if your T4 and T3 are in the right range.
Lexi - My newest, quite popular in town endo said that antibodies can go away which I did not understand at all. He told me this in response to my questioning him why I am hypo (diagnosed 2000) with no positive antibodies in lab results.... So is it your understanding that the antibodies don't go away? I'm just looking for clues to my own condition...
Thanks!0 -
Hm, I'm definitely going to watch this thread. I was diagnosed hypo in 2009 or so, but lately a new endo decided it was Hashi's, based on my thyroid scan only ( my antibodies are within a normal range - and have always been ).
My understanding is that you can't cure Hashi's but a good anti-inflammatory diet can help you control it. Now what it means seems to differ from patient to patient. Some people swear that going gluten free or paleo makes them feel good, some other swear off coffee and other stimulants. I do not think there is a single solution that fits everybody.0 -
What dose of meds are you currently on? I agree that you should have all of your labs re-run to see where you're at with meds but if you're on a super low dose, it might actually make sense. When you're on meds, your thyroid gets lazy and stops working altogether. If you're on a low enough dose though, and you've lost a bunch of weight, your thyroid might want to try to work again. It's all trial and error with Hashi's. If you have Hashi's, you'll always have antibodies - those don't really matter though if your T4 and T3 are in the right range.
Lexi - My newest, quite popular in town endo said that antibodies can go away which I did not understand at all. He told me this in response to my questioning him why I am hypo (diagnosed 2000) with no positive antibodies in lab results.... So is it your understanding that the antibodies don't go away? I'm just looking for clues to my own condition...
Thanks!
Hi MCLA4mom, I also have Hashimoto's. I was taken right off my meds after I had my first child. I even went through my whole second pregnancy with no meds. (They still watched my levels throughout the pregnancy, but everything stayed fine.) I stayed off them for probably about a year after I had my second child, then started to get symptoms again (including gaining back some of the weight I lost...). I ended up back on meds, but on a low dose. Things can get better, (I guess a bit like remission), but mine certainly came back. Hashimoto's is a tricky thing to have.0 -
Hi guys, I am on a very low does (50mcg) and I have been on it since I was diagnosed. I really need to learn more about my own condition. I have just been a good patient. Shut up and take my medicine. Until he suggested taking me off it. That woke me up. I assumed that a huge part of the reason I was able to lose my weight was because was on meds. I know one person who says she controls her Hashi's with diet.0
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I think this is interesting....I'm on T3 and was on quite a high dose a few years ago when i started getting chest pains..i lowered the dose myself and the chest symptoms subsised...i went to the docs and they upped the meds and the pains came back...so i took myself off the meds and after a while i ended up in an ambulance with atrial fibrilation (my heart was going bonkers)..since then i have been on a very low dose of t3 and i feel much better than i have ever felt on meds. My TSH is high but my free T3 and t4 are in the normal range. I really believe that the meds confuse the endocrine system and the thyroid can't recover when there are synthetic hormones in the system.
I've read a lot about how nutrition and vits and minerals can help the thyroid recover some help the thyroid produce thyroxine, some help the thyroxine convert to thyronine and some help the cell uptake.
There's lots of info out there about this. Good luck...I'd love to know how you get on x0
