Back in 1999-2000 I went from trim and slim to round and bumpy. In just over a year I put on 65 lbs. I was sleeping 10 hours at night and a 2 hour nap every day. I rarely ate and I barely functioned. It was awful. I was also having trouble with my hands in the mornings. My knuckles hurt and I always felt swollen. I finally went to a doctor and he checked my thyroid and tested for rheumatoid arthritis. I hadn't heard anything in 3 days so I called and my doctor was on vacation and the one filling in gave me the results. Normal. I remember crying, feeling hopeless, not knowing what was wrong with me. Hubby was certain that I was dying. A few months and 20 lbs later I got a call. It was a nurse from the doctor's office and they were going through records and noticed that I had not started any meds for my thyroid. I was shocked as I had been told that I was within normal range. Apparently only one test result was back and the other doctor was not aware of both tests and somehow it was missed. So now I knew and this time my tears were that of relief. It is scary to be so out of control of your body. So I started meds and while the weight never came off I finally quit gaining.
Fast forward a few years. I was feeling good and had gotten lazy and was no longer taking meds. And then bam! A repeat of the previous years. I put on 28 lbs in 2 months. That is a LOT!!! I knew the signs and symptoms so I returned to my doctor to get back on meds. However my TSH was 'normal' at 2.64. I really didn't care what the test said I knew that I didn't feel good but my doctor wouldn't treat me. The same doctor that told me I would be on meds for the rest of my life. So I switched docs and got the same response. Being the stubborn person that I am I decided to skip all of the primary care docs and found and endocrinologist. My first visit she was not convinced that anything was wrong but ran tests anyway. Everything was normal except one thing: antibodies. I was positive for thyroid antibodies. I know very little of all of this but she did say that it would cause the same symptoms as a high TSH and put me back on meds. Not long after we moved forward with EA and at that time I had told the RE about this and he put me on heparin during my cycle. And that was the cycle that I got pregnant with Maddie.
During my pregnancy and since I have just gone to my new primary doctor. She has been good and I like her so it was easier. And when I requested to be tested for antibodies she told me she would include it. And then in January I did another FET and it was negative. Before it I had mentioned that I had used heparin previously and he saw no need as it did not help those with hypothyroidism. I had forgotten about the antibodies and never even mentioned them. Now that I have been dieting and not losing like I thought I would (I am only down 2 lbs and not the 14 I had previously thought) I decided to return to my endo. I requested my labs from my doc and found that she had in fact not tested anything other than TSH. So I turned to dr. google and found that those with antibodies may have trouble getting pregnant, that the body could attack the embryo and prohibit implantation or cause a miscarriage. Now I am concerned that our next cycle is doomed if I can't get this figured out.
I am going to push for the heparin no matter what. Even if there is no need for it other than peace of mind. I will feel much better being on it. I am also going to my endo tomorrow and hope for answers. I really, really want to proceed next month but not if it means certain death to these embryos. They deserve the best chance I can give them.
If anyone has any suggestions, advice or insight please share!!!
I too have thyroid antibodies. And it was ignored on my first 2 cycles. But after some research I brought it to my RE's attention and we started adding prednisone into the mix. I take 2 weeks worth right before transfer, stopping the morning of the transfer.
ReplyDeleteMy TSH is okay as long as I'm medicated. But I am closely monitored during pregnancy. Good luck with your Endo. Thyroid issues are a bugger!
I have thyroid antibodies (Hashimoto's thyroiditis) too. We did absolutely nothing special to address this at the time of my FET. In fact, a week after transfer I actually found out that I was hypothyroid. I never knew thyroid antibodies could be an issue affecting pregnancy??? Now I am thinking I should research this for any future transfers...hmm?
ReplyDeletePush for Heparin!
ReplyDeleteNo other insight, but I think that it may help based on your past experience.
I don't know a ton about thyroid issues, but you may want to have your vitamin D levels checked if you haven't already as I've read people with thyroid issues often have low levels of this important vitamin, and you don't want to be low while pregnant as it can increase your risk of miscarriage.
ReplyDeleteYup - same here. Hashimoto's thyroiditis. I was diagnosed after my RE found I had high FSH. She ran another battery of tests and found that my anti-something antibodies were through the roof. I was told at the time it could increase my chance of miscarriage and was so very upset about it. Since then I have found a great Endo that monitors my TSH, T4 and TFree?4 levels every 6 months or so. I also had several thyroid nodules that I had biopsied shortly after we started down the road of embryo adoption, but they came back fine so now my Endo just monitors them (feels to make sure they aren't getting any bigger) and then has me in for an ultrasound on them every few years. I have never been hypo or hyper but was told that these antibodies are an indicator that at some point I will be so that is why we monitor it. I have never had any thyroid issues until pregnancy - with my 2nd beta draw, they tested my levels and they were high for pregnancy (though still in the normal range for non-pregnancy) so I am taking thyroid meds for the first time ever. I did not take heparin or anything special for any of my 3 embryo transfers. First one resulted in miscarriage early on. Second one was Makenna and so far so good with this 3rd transfer. Good luck with your thyroid - what a roller coaster it has been for you!! Try not to worry too much - just keep educating yourself and do all you can to make sure you are staying on top of it with your medical team. Good Luck!!
ReplyDeleteI have just found out that I have an elevated TSH and have had more tests ordered. My RE seemed to think sometimes it is just out of whack... but that doesn't seem like a good answer to me. Hope you get some answers soon.
ReplyDeleteI am also guessing that you have Hashimotos. I was diagnosed about a year ago after having taken thyroid meds for hypothyroidism for over 10 years. Hashimotos is tricky, because it is autoimmune and can change so much. Not sure if you are interested in alternative routes, but that is where I have found help - finally! I was having other symptoms (very irregular cycles, achy bones and joints, tired a lot, sugar craving beyond belief!) There is a book called "why do is sill have thyroid symptoms when my lab tests are normal?" by Dr. Kharrazian. I had a chiropractor that helped me through it because the book pretty complicated to understand. It means significant dietary changes, but it made a HUGE difference for me. I was just relieved that I finally had an answer for all the weird symptoms. The traditional medical community does diagnose hashimotos, but they only treat it with meds that help your thyroid. The problem is that it isn't your thyroid gland malfunctioning, but your immune system attacking your thyroid. The problem is once your immune system is on hyper drive it can move to other things, thus the really weird symptoms. We had done EA and have two children with one on the way from EA. I was strongly advised to get my hashimotos under control before getting pregnant again. We had to take more time off than I would have liked, but it has been a better pregnancy because of it. You may not even be interested in alternative stuff, but in case you are I wanted to give you some info. I used to be opposed to alternative stuff, but once you come up short over and over from the medical community it makes you realized that they don't have all the answers!
ReplyDeleteHere from ICLW - I know nothing about thyroids. But it is so frustrating that it took so long to get on your meds and figure out what you needed! I hope you are able to push for the heparin, if only to give you peace of mind and make you feel listened-to.
ReplyDeleteYou probably don't realize it, but we are somehow connected ;) I swear, everytime I read your blog we have more and more in common. I read your post about your dad, and I don't think I ever told you, but I also never knew my dad. And JUST today I have been complaining to my husband about how bad my hands and feet hurt. I was just diagnosed with the thyroid antibody thing last week! I just did not know this joint pain and that could be related. Thanks for posting!
ReplyDeleteI know this doesn't help you at all... I'm sorry. I am just starting my research on this whole thyroid issue and will let you know what I find out. I am praying it won't effect future pregnancies :/
So ever since seeing your post and learning that the thyroid antibodies were called "Hashimotos" I have done lots of research and have gone gluten free (it's been almost a week) and I feel much better already. Gluten free doesn't help everyone with Hashimotos, but it is a starting point. I would also recommend the book Julie H mentioned by Dr. K...! Lots of good information. You are not alone! :) But left unmanaged Hashimotos can lead to hypothyroidism.
ReplyDelete