Hi:

You're doing everything exactly the way I would go should I need a TT down the road. You will do fine. I'm so proud of ya and the research you've taken for this path you are on.

I would suggest you get the TSI and other antibodies tests every so often after the TT to see when or if these will come down in the numbers. I do not know the answers to the question you are asking.

Remember the TSH levels is falsely skewed by thyroid antibodies and is not a good indicator of testing for remission at this point. Plus your TSI is still out-of-the range and which will likely explain the TSH levels for you.

You may want to add low dose Magnesium with the Calcium and Vitamin D3. I've been reading where too many people taking just straight Calcium with Vitamin D3 and no Magnesium are at increased risk for heart attacks and other heart problems. Scary...! :-(

Another suggestion...make sure you don't go crashing hypO so quickly after the TT surgery because you already know that when you are hypO or even slightly hypO, you get the awful anxiety/panic attacks. You want to insist on replacement med ASAP.

{{{hugs}}} :-)

I am also considering a total thyroidectomy. If it is me, I will stop the antithyroid medicine and see what happens. If a relapse, then i will go for the surgery.

Btw, i thought the TSI antibody will reduce if we take out the thyroid, isn't it? The TSI antibody is made in the thyroid?

Here's a link to the answer. Apparently I recalled this after reading this. TSI can be found in the eyeballs (TED)and the surface of the skin (such as in PretibiaL Myexedema). So if the thyroid is removed, TSI can still intensify in the eyes as well as the skin.

http://www.hopkinsmedicine.org/endocrine/graves/Answer.asp?QuestionID=22

{{{hugs}}} :-)

Wow, you are very hypo. :( So sorry!! No wonder you are feeling bad. :( I cannot imagine having to take 25mg of PTU as hypo as you are. I am so, so sorry and will be keeping you in my thoughts and prayers. I would become a human cramp if that were me.

Okay. I'm not a doctor, so I'm just going to give you my own humble opinion on here based on stuff I've seen. You can take it or leave it, as again, I am not a doctor and I am personally uncomfortable with ablation.


Okay, here it is: Why not wait for a little off of PTU to see if you stablize on your own? (You weren't hyper all your life, you could go back to normal!) Is there any reason for this rush to ablation? Have you gotten a second opinion? Do they know if your nodule is hot or cold? are you absolutely sure that this is the best treatment option for you? What is the rush?

1.) You have responded really well to PTU in a short amount of time and you have not shot back up to hyper quickly at all, which I think was your doctor's initial fear. With careful monitoring, and your dietary changes, you could just see if you go back to normal. You were normal once, why couldn't you go normal again? You also know that PTU worked and worked only all too well. If you went hyper, you could always try that again and then get surgery if you needed to.

If it were me, I wouldn't want to ablate until after I saw if I could get back to normal and stay normal on my own, but I personally feel uncomfortable with ablation, so please bear with me. These are probably my own anxieties coming through.

2.) Your TSI is not that bad (I have seen a lot worse on here!) and its going down and not up. This is good.

3.) 25mg of PTU is going to make you feel miserable right now. You are already hypo and your numbers seem to be sticking around at the hypo range rather than shooting up immediately to hyper. I can't imagine having to take that much PTU while as hypo as you are. Going really hypo can be very bad for people with Graves'. It can start eye trouble if you don't already have it, from what I've seen on here and had happen to myself. Is there any way that they'll go lower on that PTU dose for you? How about half that? I just can't imagine a month on that dose with numbers like yours.

Okay, so that's it.

On the flipside, you could regret not ablating sooner, and some people have struggled on meds for a long time, trying to get stable and then felt better after ablation. You may not have to alter your diet after ablation? Some who ablate have no trouble with diet and some who ablate, still have to watch their autoimmune triggers. Its so hard to say! Regardless, working closely with your doctor either with your thyroid in or out will be crucial for getting your well afterwards.

So, I do recommend a second opinion and would personally want to wait just a bit and see if I was able to achieve euthroidism off of PTU at least once before I made a permanent alteration to my body.

Big hugs and I wish you the very best outcome of whatever treatment you choose.

Take care,
Hannah

I will also be adding magnesium... I just read an article on that today in our daily paper :) I also read Vitamin D3 is better than Vitamin D in aiding in the absorption of the calcium and the magnesium keeps one from getting constipated. I read that article that you linked MMZ.... does that mean that there is a possibility of the Graves affecting my eyes since I won't have a thyroid anymore?

My surgeon said I will be quite hypo (due to PTU doese) prior to surgery as a safety precaution to prevent a thyroid storm during surgery so once my thyroid is removed, she will put me on a super low dose of synthroid to try to get me out of hypo state sooner than later and a week after surgery is when she will increase my dose according to my weight and we will start trying to get me where I am most comfortable. I am happy with my decision.

I would love to say that remission is the way to go for me and it is ideal, however, with the symptoms I've experienced, I would rather just bottom out without a thyroid and go from there. I'm not willing to wait and see if I have a relapse or not.... I'm confident that I would relapse at some point and am deathly afraid of another thyroid storm so this is my way of taking control of my life again. I've been miserable and I've hated it. I've had ONE absolutely decent month since this journey started a year ago. Thyroidectomy isn't for everyone.... it really is a personal choice.

I hope not about your eyes...! :-( I think that you get on Synthroid right away, the antibodies should stay tamed down, right?

There's also a choice with using Armour if the Synthroid does not help you convert the T4 into the T3 if your T3 goes low.

{{{hugs}}} :-)

hi,
Yes, many people get TED after ablation as Graves' and TED are autoimmune conditions. Ablation of the thyroid doesn't cure the autoimmune disorder, but does control hyperthyroidism as a result of autoimmune attack. When the thyroid is removed or killed off with RAI, the autoantibodies that were attacking the thyroid can no longer give us hyperthyroid symptoms. So, ablation of the thyroid is a way of controlling hyperthyroidism, only. Ablation of the thyroid will not mean that TED or the thyroid skin disease will not occur, unfortunately. :(

Am concerned about the "quite hypo" statement from your endo :( Being hypo is not good for you either. I really think you should seek a second opinion here. Something doesn't seem right to me about your endo putting you on that high of a dose of PTU with your numbers, especially since seeing you off it, you have not shot back up. I'd get a second opinion, otherwise you may be in for a very uncomfortable experience here. Am also concerned about the "low dose of synthyroid." Just how long do they plan to keep you "quite hypo" anyway?
Something just doesn't seem right here. PLEASE seek a second opinion.
Hannah

Most people who have been bouncing back well after a TT got put on a dose of synthyroid that was based on their height and weight, etc. It shouldn't be, "lets start you on the lowest dose possible while you're quite hypo." Please ask others who have had a TT and see if what your endo is planning sounds right to them. Malbers, and MandiNB and MzHoneythang have all had successful TT's and are wonderfully nice people. Please ask them about this.
Big hugs, from A very concerned HannahBee

Thank you Hannah for your concern which is quite understandable considering that I have done very well on PTU since my storm. This is the 3rd endo I have seen regarding surgery for my thyroid.... the first two suggested RAI. The 2nd one was unaware I was going to get another opinion and after meeting with the 3rd one, the 3rd one consulted with the 2nd one on the best route to go with my thyroid and together, they came up with a plan and presented it to me. The surgeon decided not to put me on the PTU for a month prior to surgery after seeing my labs and has decided to start me back on PTU 8 days before my surgery instead at 25 mg since my levels are already hypo for me. I will lab weekly until I start the PTU up to monitor my levels closely in case I do go hyper or fall more hypo... then she may lower the PTU even more the week before surgery. She went very much in depth with me about possible complications and also explained the risks are higher in Graves patients. She wanted to do a scan to check if my nodules are hot or cold but I don't want any type of radioactive iodine running thru my body unless it's diagnosed that I have cancer. So she will biopsy it once removed. I wouldn't call this a rush when I've been suffering for a year now... I sleep sitting up or reclined (literally) and have been for a year now since when if I lay flat or lay on my back, I usually get a choking sensation and am jarred out of my sleep... then panic usually sets in. Also, I would LOVE to eat normal, solid foods and not semi solid foods. I feel like a toddler many times as I dice my food very very small or even blend it if needed. I avoid steak, beef (unless ground beef), hamburgers, and anything that can't be diced up.... including breads, thick pastas, chips, anything chunky, etc due to what I thought was a goiter in the front of my neck which has been confirmed as this nodule on my left lobe in front of my trachea. So, in my own opinion, I feel that surgery is the better route for me. Yes, I am absolutely ecstatic that in less than year's time, I probably did achieve remission on my own with the help of PTU and being persistent with my doctor thru the year that I refused RAI. The surgeon I have chosen was not chosen for me, I researched surgeons nationwide including NYC (where I don't even live but some top surgeons come out of) and I chose her. She is an expert in parathyroid surgery and does about 3 to 6 thyroid surgeries a week... She will be working closely with endo #2 to dose my synthroid. She said based on how I feel after surgery, she my increase my synthroid sooner than my week follow up since I may feel dramatic effects of hypo after my thryoid is removed. She has even gone as far as giving me her personal email and contacted via cell once already to answer additional questions. She has promised she would be available for me to contact her 24/7 coming out of surgery as she thinks anxiety will get the better of me. And she's probably right. :) She did mention trying to get me out of hypo as soon as possible following surgery as she doesn't want me sitting in misery. I completely understand your concern and welcome any other concerns you may have for me.

MMZ: I did ask about Armour instead of Synthroid and she recommends starting on Synthroid and if I feel miserable a couple months later, we can explore the option of switching to Armour or something like it.

Sorry for all the responses. It just seems like you're hypo enough already, and your doctor is hyper-paranoid about you becoming hyper. With levels like yours right now, and the fact that you just visited the ER due to your hypo symptoms, I just think that putting you on that big of a dose of PTU is not a good idea, and may not be necessary.
Again, I'm not a doctor, but it is logical to assume that if you are hypo now, and you're hypo now while not on PTU, if she puts you on more PTU, you will go increasingly more hypo. Being hypo felt bad enough to send you to the ER...I'm just worried about her making you feel worse than you did when you went to the ER, and its very possible.
You respond well to PTU. Maybe she can let you climb a little higher out of hypo and keep you stablized there on a smaller dose of PTU? I don't see the medical benefit of forcing you so incredibly hypo and then administering lugol's on top of it. I think a second opinion on this wouldn't be a bad idea at all.

Ah, that's better. Good luck with your treatment and big hugs!! I was worried that they were just going to keep you increasingly more hypo and that didn't sound right. The dietary restrictions are a big problem, so I hope they get completely resolved for you. I still struggle with them, as going out to eat can be really tough to do.
Big hugs!!
Hannah

Well, she said she is taking every precaution to prevent a thyroid storm during surgery since I have a history of it a year ago. She said when I first start back the PTU (8 days prior to my scheduled surgery) that I won't feel the effects til a few days after starting it and that I will probably be miserable about 3 days before surgery or so and that will be due to my levels dropping more hypo. My levels may still go up a tad before that point since i am no longer on PTU. Right now, she said I have subclinical hyperthyroidism since I have been getting random increases in heartrate from time to time but am showing symptoms of hypo. I just called my endo #2 to speak with her regarding the surgery... And I would agree that she is hyper paranoid :) but for good reason. She's been doing thyroid surgeries for 12 years now and is well respected in the field. I will see what endo #2 thinks as I let her know the whole plan again just to be sure she is fully aware.

I also wrote to Elaine Moore to see what her thought on this is as well since I have also leaned on her for advice thru this journey.... will keep you posted :)

Well, I would have to disagree about the subclinical hyper. She's going by your TSH on that one. These are pure hypo symptoms and your FT4 and FT3 back that up.

Sorry for the rabid responses about the PTU, you can probably tell that I hate being hypo, lol! I was like "What? They're putting her on how much PTU with numbers like hers for HOW long???" I think I made sounds of shock and horror so loud at work that people noticed and someone was like "What happened?" I'm glad that things are getting worked out and you have a date worked out for getting all this madness behind you, hopefully once and for all. This thyroid stuff sucks big when it gets out-of-whack either way. It sounds like you're on the right track.

Big hugs!!

Hannah