Question about ovarian stimulation drugs

gardeniagirlknits · February 2016

Hello. I'm a regular on the ttc board but not over here. I'm not sure if this is where I belong because I'm not currently working with an RE. But i have a question that might be better answered here or on the infertility board.

I'm wondering if anyone has any experience with iui or ivf without ovarian stimulation drugs? I'm not allowed to take these bc of personal thyroid cancer history and am curious if there is ANY assistance I can receive from an RE at all since I can't take these types of drugs. Just trying to wrap my mind around the idea that fertility help is probably not an option for me and I'm having a difficult time with it... Wondering if there is something I can do that I'm not thinking of.
If more medical history is helpful, I'm happy to share... I just didn't want to make this a long obnoxious read. Anyway, thank you so much for any ideas you have.

wifeinraleigh28 · February 2016

Hello there! I don't have personal experience doing IUI without meds, but it is possible. The RE will still monitor your cycle/progress with naturally growing follicle(s) and will time the IUI accordingly. They might still be able to trigger you (HCG shot to trigger ovulation for optimal timing of the IUI), but that would be up to your doctor to decide. For IVF, however, meds are a necessity because they need to retrieve multiple eggs in order to do the process successfully. I would certainly recommend working with an RE regardless of whether or not you can take certain meds, since an RE would be the expert here in determining an appropriate treatment plan for you. Best of luck!

gardeniagirlknits · February 2016

Thank you so much! @wifeinraleigh28

riveridgional · February 2016

@gardeniagirlknits Yes, as PP said, IUI should definitely be a possibility. I'm also wondering if your RE may also know of a particular type of drug that may be okay for you to take. Additionally, REs like to be more aggressive with your TSH levels to ensure they are in optimum fertility range and you have a buffer for when you get pregnant so your levels are still low enough to not cause issues in sustaining the pregnancy by the time you find out you are pregnant and can retest your TSH. I'm assuming you are on synthroid or levothyroxine if you had thyroid cancer though I don't know the extent of measures that were needed for your recovery. So, sorry if this is the wrong assumption. Most REs will want to see your TSH level between 1 and 2 or 2.5 (depending on RE (instead of 1 and 4). If you know your current "leveled out" TSH levels, this may also be an added benefit of seeing an RE (I personally just felt so much better when my levels went from 3.7 to 1.3).

Given restrictions on medications you have, I think an RE would be very beneficial to assist you in knowing your chances of pregnancy and the best way to get you pregnant. They will run diagnostic tests, like an SA for your DH, an HSG to make sure your tubes are clear and see if you have any structural abnormalities with your uterus. They will also do bloodwork on CD3 to check your levels and an ultrasound to see how your ovaries and lining look. If you don't go to an RE, you'll probably always wonder if he/she could have done anything for you, and your treatment options may also be wider than you initially thought!

Best of luck to you!

gardeniagirlknits · February 2016

@riveridgional thank you so much for responding!

My tsh levels are monitored very closely... And tsh is kept at a 0.15 (they keep me very hyperthyroid) . Usually, my endo will want me at 0.10 but is allowing it to stay at a 0.15 since we are ttc. She swears to me this will not Prevent me from getting pregnant. She says that it's my t4 (which IS kept within a normal range) that would be of more hinderance if not correct. I know this sounds paranoid... But... I don't believe her. I have begged to be raised to a 1, and she won't budge bc she says it will encourage cancer cells. In one sentence they call this "the easy cancer" and with the same mouth they'll go overboard to the point of impairing my fertility to prevent it from coming back. Well... If it's so easy, let it come back and we will treat it after I have a baby!???!!!! Ugh.. I know that's not realistic... But... It is irritating that the don't understand that having a baby is my priority.

I do agree with you that I will feel like I will never know if an RE would have been of Help to me. Additionally, I have gained a lot of hope, knowing that at least iui would work For me, even if not in the traditional way.

I have an appointment with a new endocrinologist later this month so maybe this one will let me be more liberal with the tsh or be of more help.

(also, yes... I am on synthyroid... 150mcg daily)

AL_TwinCities · February 2016

@gardeniagirlknits why do you think keeping TSH at 0.15 is problematic for your fertility? It was my understanding that low TSH (especially under 1) is best for fertility.

gardeniagirlknits · February 2016

AL_TwinCities said:

@gardeniagirlknits why do you think keeping TSH at 0.15 is problematic for your fertility? It was my understanding that low TSH (especially under 1) is best for fertiliity

*qbf*

I've looked everywhere for research trying to confirm that it would not hinder my chances, and I cannot find any. That's why I'm so doubtful of my endocrinologist. I feel like I need something scientific that says "you have just as much of a chance as anyone else to get pregnant while hyperthroid" and instead I find tons of research that says "have your thyroid under control before you ttc".. Which isnt very relevant to anyone who's had thyroid cancer, bc we are being kept hyperthyroid on purpose. But those articles make it sound like if your there is anything other than 1, you won't get ku! I gotta get off Dr. Google... But.... I need SOMETHING scientific to ease my mind.

.15 is a long way from 1.0 and i guess I just have a hard time understanding how this couldn't affect my fertility. It's SO hyperthyroid that my fingers tremble and I have hot flashes And can no longer drink caffeine bc I will feel out of control energy. I am seeing a new endo at the end of the month, maybe she can offer some science that will calm me down? I do best if I know ALL the information. classic type a.

riveridgional · February 2016

@gardeniagirlknits I'm going to be completely honest with you. I also think it has to be impacting your fertility. Of course, I am no doctor, but I would really want an opinion from a reproductive endocrinologist (RE/fertility specialist). Your endocrinologist is not specialized in fertility issues and your OB is not trained in treating fertility issues, which if I remember correctly from a different post you made, you had before your cancer diagnosis. I would demand a referal to an RE from your OB. Or, look into your insurance. Do you have infertility coverage? Is a referral from an OB needed for infertility coverage to apply? I had no infertility coverage, so I didn't even ask for a referral from my OB. I just made an appointment with an RE. Some of my diagnostic tests even wound up being covered because of how they could be coded.

I understand they don't want to encourage cancer growth, but what are they planning to do if you do actually get pregnant to ensure your levels are safe for you and your baby? Your reproductive endocrinologist is also an endocrinologist, so he/she most likely will have the knowledge to help you circumvent the cancer issues. Obviously, you'd want to ask the RE's thoughts and plan at your consultation. It's possible all you need is a consultation to make you feel better about everything or to at least have an answer and help you develop a plan going forward. Good luck to you!

gardeniagirlknits · February 2016

Thank you for validating my fear a bit. My fear has been pushed aside by my endo, my ob and my dh (who has no medical training but is naivley "hopef MPPul").

My fertility issue prior to cancer was found to be a gigantic cyst ("the size of a child sized basketball"-obgyn) and severe HYPOthyroidism. My tsh was a 596, they weren't sure how I was still alive. They told me that this was the answer to why I wasn't KU, put me on synthroid, and sent me on my way. But one doctor remained curious and ordered a sonogram for my thyrpidnmand tested me for hashimotos. I had hashis' and two tumors (that no one could feel by touch) that were later biopsied and found to be cancerous. They told me as soon as my thyroidectomy and cystectomy was preformed and my labs came back stable and clean then I would be " pregnant in no time". Three months later... Here I am. Being told that I have only been "healthy" for three cycles and it can take a healthy couple up to a year. Which I understand. But what I DON'T understand is how they are considering me "healthy" with a tsh of 0.15

I will talk with dh about making an appointment with an RE. Unfortunatley, Nothing is covered unless they can manage to code it with my thyroid stuff. I have a new endo later this month so I will most likely wait to see if she is more helpful in allowing me to be at a 1 or at the very least offering me cold hard scince /data that proves that it shouldn't cause me problems. I guess if we don't get answers there I will ask dh what he thinks about paying out of pocket or switching insurance in November during enrollment. By then we will have truly been "healthy" and TTC for a year so I have a suspicioun that my ever optimistic dh may be more on board with that idea. We shall see.

Thank you so much for your help.

Edit: spelling

Also to add.. My cycles are textbook. Temps, cm, 28days, usually o on day 14. This is what the docs are focusing on to use the word "healthy" and why I think dh is hopeful. I don't know if that helps anyone play devlis advocate as to maybe how my hyperthyroidism could still be healthy --I am certainly hoping it is true... I just need science to calm me down.. What can I say... I'm a facts girl, that's why I'm not on baby centre

riveridgional · February 2016

596?? OMG...I can't even imagine how you were functioning. I felt miserable when mine was just below 9.

This has me interested. When I had TTTC before seeing my RE, my focus was finding research on hypothyroidism, but I love science and especially fertility information (definitely went into the wrong field for a career) so I'll probably try to research it when I have some time. If I find anything, I'll let you know.

So, do you have any of your thyroid remaining? If not, what exactly is the concern if your levels are normal? Are they worried about tissue they missed?

AL_TwinCities · February 2016

@gardeniagirlknits now you've got me wondering what to ask about thyroid when we have our infertility consult next week (hypothyroidism runs in my family). Have you seen this blog? https://hypothyroidmom.com/hypothyroid-moms-story-of-hope-her-miracle-babies/

If you can find her original source for the recommendation of TSH being between 1 & 2 when TTC you may have the ammunition you need to have a more productive conversation with your endocrinologist.

gardeniagirlknits · February 2016

@AL_TwinCitiesYes I've been following this blog

when I found out that I had such significant thyroid problems I had many sleepless nights reading everything I could get my hands on. For sure pay attn to your thyroid health... It plays such a significant role in fertility! I have Compliled a Stack of research to present at my new endo appointment. I'm sure I will get a gigantic eye roll. But... You know.... The first time I got a gigantic eye roll in a doctor's office re: lab work, those results ended up diagnosing cancer. So... I'm not scared to rock the boat a little.

@riveridgional no, I had a complete thyroidectomy. But... The gland is very "sticky" , so it is impossible to get every cell out without damaging vocal cords and parathyroid glands. For the rest of my life I will have blood tests that measure whether thyroid cancer cells are present and will have to do "self checks" (kind of like one does for self break exams). Also, Thyroid stimulating hormone can be produced without a thyroid. It is not a hormone produced BY the thyroid, it is a hormone produced in order to stimulate the thyroid. Basically what happens, is if your pituitary glad thinks your thyroid gland isn't working hard enough, it produces TSH to try to kick it into gear. Thyroid cancer cells in leftover tissue will THRIVE off of TSH. Therefore, It is common/"best" practice to keep tsh levels suppressed in thyroid cancer survivors... And typically I would be fine with this. It's the ttc part that makes it more complicated. I basically have to find a doctor that will allow me to "risk it" while we try. That is apparently difficult for liability reasons. I think that an RE might be able to help me out a bit on this, Since their goal would be to get me ku. and I will look into that after this new endo appointment if she is not willing to make an adjustment OR offer science to prove that I have just as good of a chance as everyone else as long as my t4 is good. Yes, 596 felt like crap. What made it worse though, was that I was gaining weight and we had just moved for DH work and I was no longer working. So all day I was pushing myself into working out for 4+ hrs a day trying to lose the weight and I was GAINING still. I was eating less than 1000 calories a day. it was such a mind ****. I'm sure you can imagine. I was desperately EXHAUSETED but I HAD to exercise. I cried myself to sleep every single night bc my ob's nurse was telling me that I wasn't ku bc I was "overweight" . I swore to her I was exercising and eating well and she clearly didn't believe me. It wasn't until i told her I was Going to Change Doctors if she wouldnt order a thyroid lab, that she finally ordered it. She apologized profusely afterwards.

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