Hashimotos Help? How did they miss this? What do I do?

nrose778899 · October 2014

Hello Everyone:
I did an intro on the 35+ board a while ago- I'm 35 and we have been trying for a while (no BFP yet). This board has helped me figure my body out and in fact, is why I was able to recognize I had Hashimotos in the first place. So thank you to the bump community!!

Like I said, I finally I got a DX of Hashimoto last week (appears that I have had it for over a decade). The experience has really made me distrust doctors and I'm just hoping to get any kind of feedback on my situation.

Basically I started with an RE about a year ago. A leading RE in NYC that people rave about. Their office called me about the D3 bloodwork about a year ago saying my thyroid seemed a little high- (as in I'm hypo), come back for a test. I came back and was told it was normal. After a very difficult year of TTC and through temping, I realized I was hypo, went to an Endocrinologist and had it confirmed. He says my thyroid functions pretty well but I should be on meds to bring my levels down for TTC purposes. He said- basically- WTF did all your medical providers miss this? My thyroid felt very obviously large to him for starters.

How the heck did a leading RE miss this? What else is he missing? I had 3 failed IUIs, all under his care but little wonder. Why would they not have referred me to get checked out for this? Any my family doctor too who knows we are having problems and knows my test results for thyroid were borderline normal in all my physicals year after year?

So beyond my question of how did they all miss this is what can/should I do moving forward? What results should I be asking for and what should I be asking the RE if I ever feel like working with him again? I hate the idea that I can't trust my medical providers to be on the ball but I have now wasted a year without a very obvious DX and I don't want to waste anymore time in determining what my issues are.

Any help much, much appreciated!!!

BethKate2 · October 2014

I'm sorry you're dealing with this.

Do you know how high your TSH level was? I'm wondering if it was low enough that your RE wasn't concerned, but slightly high for TTC purposes. My RE said that anything from around 1-5 is considered normal, but for TTC, they want it to be around 2.

nrose778899 · October 2014

Thanks so much for your responses. Yes, basically I do fall into that borderline category of hypothyroid but the thyroid inflammation really shows that it's hashimotos. My level has always been hovering at almost 4 (around 3.8 last time). The RE did well, a whole range of tests. Tons of blood work, HSG- couldn't identify any issues. Husband's SA was just fine. They did see some kind of problem as they called me back but by the time I went back I guess my range was back in "normal" but it still must have been high for TTC purposes!!

I think it's a good idea to ask the RE how they missed this. I get that I am borderline but when you are dealing with women with fertility issues, should you be referring borderline cases to confirm there isn't anything wrong? I didn't want to start the second guessing the doctor game because dealing with failed cycles is hard enough but this has shown me I really need to take matters into my own hands as much as is possible.

Thanks for your help, for real...much appreciated!!

I wonder if being hypo/having hashimotos- maybe I should be tested for endo? How do they test for that? Is there anything that tends to go along with Hashimotos that anyone knows of that I should look in to?

I think my RE is great BUT I think it's a factory with seemingly endless patients and I just got lost in the mix. Not a great feeling going forward.

BethKate2 · October 2014

3.8 isn't all that high (mine was 8 back in July--eek), so maybe that's why they didn't start medication. I'd mention it to the doctor, though.

As far as endo, the only way to know for sure if you have it is to have laparoscopic surgery.

emmej313 · October 2014

I have Hashimotos and my thyroid is actually normal more than it is hypo. I was diagnosed with hypothyroidism in college, and then when I graduated and went in for a physical the doctor said my thyroid was normal and took me off my medicine. About 3 years later, I was getting a lot of the hypo symptoms again so went back to the doctor. They finally recognized it was Hashimotos. They keep me on a very low dose of synthroid and monitor me every 3 months since it can constantly fluctuate. I know that it seems easy to wonder why it wasn't caught before, but if it was normal during some of your testing, the red flags wouldn't pop up.

I am glad that you finally have been diagnosed though, because that means it will be more monitored. We all know how closely related fertility and thyroid levels are, so the constant monitoring will help.

nrose778899 · October 2014

Thanks all. I'm going to call them soon and ask WTF politely. I am seriously thinking of switching REs as I have had several issues.

I'm a few days on sythroid and wouldn't you know I am having an AF from hell most likely due to starting these meds....sigh.

Anyway ladies, thanks once again.

nrose778899 · October 2014

wow, thanks for the info @lemonliz...so your cycles got worse? Not to be TMI but this first one is MUCH heavier with clotting, etc. So could that be normal? How did it go once you started meds? @bethkate2 & @em_shelton would love to hear about your experience on meds too.
So grateful there are so many helpful people on this board. THANK YOU!!

emmej313 · October 2014

I had always had painful heavy periods, so starting the meds didn't really affect mine much. My dose is so low that I don't really have many side effects (thankfully), but it does make you understand your body a little better. I can always tell if my thyroid is out of wack and just call for a blood test. GL to you

BethKate2 · October 2014

I had no symptoms that my thyroid was an issue, so I can't say that the meds made me feel any different or made any difference to my cycle, but since starting levothyroxine in July, my TSH has gone from over 8, to 5.8, to 4.04. I go for my next blood draw next week and FX it'll be under 3.

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