[spenanelson]

in reply to: labs – frustrated and stressed #1173792

Kimberly,

Thank you for the link and the response. I am still waiting on my Doctor to call me back with next steps. I know that my Endo will take their sweet time to look at the results and get back to be, but at this point I have no idea what they will do to adjust the levels. I am trying not to stress about it. It will happen when it is meant to.

As for my RE he likes them in the lower range. And I trust him more than my Endo at this point.

I have a lot of questions and until they are answered I know that this journey will continue to full of bumps and road blocks.

[spenanelson]

in reply to: labs – frustrated and stressed #1173789

Good point on the lab ranges. I need to get that from the RE. I do like my RE and the clinic has great success rate for women my age. As for my other fertility number, they were almost perfect and much better than most women my age. I even had more than expected follicles when they did my ultrasound.

I know that most RE would discourage me from using my own eggs even but they are very encouraged by all my numbers with the exception of my thyroid.

I am going to call my General today and get my RE to fax over all the records. He has been my advocate for the past three years and has been able to really get my health issues all in order. If anything he can help me back away from this cliff I feel I am standing one.

As for medical science… the funny thing is that my body has an amazing way of regenerating tissues. The big surprise last year was that I had atropic pancreatic cells in the lining of my stomach. They normally find this in polyps and ulcers. but I had neither. so my Gastroenterologist was completely stumped on what to even do. So I am know as the girl who grows organs. it’s pretty funny. If only I could have a baby.

I’ll keep y’all posted!

[spenanelson]

in reply to: labs – frustrated and stressed #1173787

Thanks, I think I also need to get a new Endo. I have what doctors consider to be the best Endo in town and is the hardest one to get into. But I cannot get him or his staff on the phone when I am having any issues. And I know that once he gets my labs from the fertility clinic it will take him a week to respond. I am think about going over to my general physician to get his input on this. maybe he can get my Endo to call him back.

and isn’t a TSH of 3.3 considered to be in the normal range anyway? Or does that now make me hypo? And could this be more of a pituitary issues? I know that in the past they were worried about that. Then 6 months later my they found out my thyroid was back. I hope it has not come back for a third time. If it has I am donating my body to science. hahaha!

[spenanelson]

in reply to: labs – frustrated and stressed #1173785

Update…

So after 6 weeks of being at the lower 137 does my numbers came back not so positive.

My new TSH is 3.38 and my new fT4 is 1.35.

it just blows my mind how my levels can go from a TSH of .113 to 3.38 in with the such a minimal change in dosage.

This now means that they will have to come up with another dosage option to get my TSH down to the range around the 1.5 – .4 range and of course put off my IVF cycle for another 6 weeks.

I can not get a break.

[spenanelson]

in reply to: Thyroid Regeneration? #1173336

from personal experience, yes it can come back. But it is VERY VERY VERY rare. I think I was the exception rather than the rule. Mine came back 3 years after RAI and I had a second even stronger RAI four years ago. I now get regular scans and lots of blood work. So far it has not come back and they think they got all the rouge tissues.

But… adjustments of medication is the normal thing for me. It is a constant battle and most time I don’t even notice that I am high or low. I guess I get used to the craziness.

If your thyroid did come back, please get to taken care of. At first they took me off replacement, then 9 months later they put me on PTU, then 4 months later my liver began to fail and my thyroid became a monster. They more we tried to control it the more it grew and responded negatively. I would never wish this nightmare on anyone. But once again it is the exception rather than the rule.

Take care!

[spenanelson]

in reply to: Can a thyroid “regenerate”? #1171633

From my experience, your thyroid can come back. I had RAI in 2005. In 2009, my labs came back with extremely hyperthyroid levels. We lowered my meds and I was good. 6 months later I went in for IVF and my levels were all over the place. So I went back for test and my thyroid was back. This was after two years of “remission” from Graves.

My Endo told me that is was very very very rare for it to come back. And it usually came back in the 1st year. My was 4 years later. We did a second RAI with double the RAI from the first one.

Three years out, still have not gotten pregnant, and still dealing with ever adjusting meds. But no thyroid! Just make sure that you communicate with your Endo. And re-test often.

[spenanelson]

in reply to: Are heart issues tied to thyroid disease #1063210

Thank you for the response. I agree, while y’all are not doctors y’all have an abundant supply of knowledge and that is what I hope to tap into.

My doctors are good – no question about that. I do like my cardiologist. His office has gone up against my insurance company beyond what you would expect. And my gp is great as well. My last thyroid panel was in mid October so it is pretty current. And he did have just about every thyroid test performed, which is more than what my endo request. He only test T4 and tsh. However I may ask for another work up again from my GP and hope for the best.

And thanks for the new topics to research. I will do that soon. I guess I just fear that all the years of stress on my body from the Graves’ has finally taken a tole on my.

[spenanelson]

in reply to: New to Graves and struggling with life… #1075392

Jill,

I understand what you are going through. I am 38 and I was diagnosed 4 years ago, had RAI was on levoxyl for 3 years then had my thyroid come back. I have since discovered that you never really get ride of Graves. I found out that I was hyper while I was starting the process for IVF. The same day that I found out one of the main reasons I could not convieve.. I also found out that I was hyper — again.

They put me on PTU but over the next 3 months they kept having to increase my dosage and finally came to the conculsion that I had a very resistant form of Graves. In the end I was taking 600 mg of PTU daily and 25 of atenolol. I have since discovered that I suffered liver damage and tested positve for gastric parietal cell AB (4 times the normal levels) and my possible have pernicious aniema.

So I have faith that I will get pregnant.. sooner than later. I have a great team of doctors who are all working together to get me to that point. You will too!!

My advice is to do what ever you can to keep your stress level down… laugh a lot… cry if you have to… but most of all know that you are not alone. There are a lot of people who have gone through what you are going through and can really be here for you.

Take care.

[spenanelson]

in reply to: Need help.. need to choose between 2 RAI and surgery #1075572

candace3310 wrote:I understand your concern completely! To give you hope…I had RAI twice (my thyroid was so extreme, they couldn’t do surgery at the risk of causing a storm) Just make sure that if you have the RAI again, you talk to the Dr. about putting you on prednisone to protect your eyes from getting worse from the antibodies.
I also have endometriosis and fibroids, even had a large cyst removed from my ovaries. My second RAI was in June 2003 and I had to begin taking synthroid in Nov. 2003.
I had a healty, beautiful baby girl this June without even trying.
I hope for the best for you, hang in there!

Thanks for the great support. I will talk to them about the prednisone.

And funny thing is that I lost an ovary when I was 13 due to a cyst. I have been battling them ever since on my single remaining ovary.

Hopefully everything will work out and this time next year I will be pregnant (at 39 … hahaha)

[spenanelson]

in reply to: Need help.. need to choose between 2 RAI and surgery #1075570

Thank you, now that makes sense to why he does not reccomend it. He is not a surgeon.

Well I have a second opinion on Wednesday for treatment options. I will also ask this new Endo for his stance on the effects of RAI on overall fertility. My symptom are getting worse and worse and they have not been able to get me stablized enough to do the first round of IVF (egg harvesting) as I would have preferred. I just hope that if I do decided to do the RAI prior to the egg harvesting for IVF, I will have made the right decision.

I think that is my greatest fear right now.. moving forward with the RAI treatment and then finding out that it has adversly effected my egg quality even though my thyroid levels have are better.

Stephanie

[spenanelson]

in reply to: Graves Disease & other Autoimmune diseases(JCWRN look here) #1075642

I was adopted as well and I found my birth mother as well.

I have a sister who has Crohn’s disease and her doctor was not surprised to here that another sybling had an autoimune disease as well. He said that they were not realted byt in the same family.

I have also met several others with GD who have Lupus or other autoimune disease.

The best thing to do is to be as educated on GD as possible and try to live the best possible healthy life you can.

It is a tough disease.. but a good support system, good Endo and a healthy lifestyle can make the journey easier.

[spenanelson]

in reply to: Need help.. need to choose between 2 RAI and surgery #1075568

Thank you for your response. It is very difficult to weed through all the information so I really try not to look to hard.

I do trust my Endo, but I do know that he personally does not preform surgery nor does anyone in his practice. When I have asked him about surgery as an option he said that RAI was just as good with less down time and that he did not preform surgerys. That was is, no further information.

I have made an appointment with another Endo here is town just to reassure my concerns and fears. If he tells me the same thing as my current Endo, then I will do the RAI immediately and not harvet the eggs first.

I am also concerned with the fact that my thyroid has come back and continues to grow even on PTU. It is now starting to interfere with my swallowing. And while I would prefer not to have RAI or surgery and stay on the ATD’s I don’t think I have much time or a choice.

I wonder if I should to stay on birth controll pills during all this to try to save what eggs I do have. When they did the folicle exam it showed that I was only producing 4 – 5 folicles a cycle. Not very many according to the specialist. I am hoping that with the Graves under controll that number would increase.

Once again, thank you for your response. This is helping calm some of my fears and anxieties.

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