So furious with my doctors! TSH & miscarriage

[mmdrago]

We have been TTC for about 4 years now, and I have had 4 miscarriages in the last 2.5 years. Right after my longest-lasting pregnancy (close to 9 weeks), my Dr. said all my labs looked normal and didn't think I needed to get tested further. "These things happen." I went to another OB/GYN who pretty much said the same thing to me. I accepted it, I took my mind off of things.

Fast forward to the present, no more pregnancies for almost 2 years despite following my cycles, temping, and OPKs. Even my husband made a comment about how difficult it seemed to be for "nothing being wrong with me". Last month, I had an episode of bleeding right in the middle of my cycle. Heavy bleeding, with some clotting but no pain. Went to the Dr., he ran some labs and said they all looked fine but referred me for an US and uterine dye test.

Last week, I noticed that I am now LACTATING. I can express milk from my breasts. I have never had a child, this is not normal. Thankfully, I now work alongside OB/GYNs on a postpartum floor. I got my Prolactin checked again and it shot up to 37.9 (it shouldn't be over 20, should be much lower when TTC). One of my coworkers mentioned something about a pituitary adenoma, which got me looking at my TSH levels. I found a bunch of research about elevated TSH (yet still "within range") causing infertility, miscarriage, and even galactorrhea (lactating without pregnancy). My articles all say your TSH should be below 2.0 when trying to conceive.

EVERY. SINGLE. TSH lab I have had within the last 6 years has been over 2.0. I am beyond furious. How can 5+ doctors all look at my labs and not even take this into consideration? Granted some of them were general practice, but I've have at least 3 OB/GYNs look at my lab work.

Even when I took my TSH concern to one of my PCPs the other day, she said that my TSH of 3.66 was normal, and galactorrhea can also be normal. My lab here says that normal TSH is less than 3.74. At this point I am already irritated and I insisted on some action, so she "humored me" and re-ran my TSH. Imagine HER surprise when she had to call me back and let me know my TSH was now 4.33 and she was ordering an MRI. I've also been given a referral to a reproductive endocrinologist from my OB/GYN.

To think that it might be possible that 4 years of misery and heartache could have been solved by one stupid hormone pill just makes me frustrated beyond belief. I just needed somewhere to vent this all out, and maybe on the off chance someone else here might read this and have a similar situation of miscarriage/fertility issues that might relate to mine. I'm far from solving my miscarriage mystery, but I feel like a door has opened and will jam my foot in there as hard as I have to for some answers.

 

[CaliDreaming]

I can't imagine how infuriated you must feel. I really hate the attitude some doctors have that miscarriages just happen from time to time. Some miscarriages are unavoidable, but I think there is an underlying cause for most. I wish they would take more time to investigate it, because I hate that any woman has to experience that kind of pain more than once.

I hope that the RE can get to the bottom of the problem. They specialize in IF so I'm sure you will be in good hands.

 

[amy8686]

So sorry that you've had to go through all of this, but congrats on finding a cause. I hope that things are much easier for you from here on out.

The first time my TSH was tested, it was 3.85. My ob-gyn just told me it was normal. Later, I accessed my chart online and saw that number, which I knew to be too high for TTC, and called to ask for more testing. The nurse and doctor treated me like a difficult patient who was irrationally demanding more testing when my levels were clearly in normal range (which they defined as under 5!). I was furious - this was the beginning of the end of my time with that doctor.

Anyway, having had my levels re-tested and checked with the fertility specialist who I see now, they've been slightly better (TSH under 3 and T4 fine), so he doesn't think I need treatment, but it's something I'm keeping an eye on.

Thanks for your post... it seems like a really basic thing that gets missed a lot.

 

[mmdrago]

Thank you ladies for your support. It's just so hard to deal with multiple things out of whack with physical symptoms and still getting the door shut in my face. I try to be my patient's advocate whenever I can, and lots of education when I feel they are on the wrong track. All I'm asking is for the same respect when I am the patient. At this point, unless you can point me to some evidence (not opinion) as to why I'm wrong, I'm not taking no for an answer.

 

[babydustpower]

I understand your plight. I had a chemical in Nov 2011.

I was with my OB for a year and a half without being able to conceive again. She recommended HSG, IUI..a whole slew of things which I never did. She looked at my labs and told me things were normal and that my ovaries were normal.

I switched OB and the new ob looked at my labs and my ovaries. Told me I had mild PCOS and my TSH levels although normal, was not optimal to conceive.

He put me on thyroid medication, metformin, and ASA. One month later I conceived naturally.

Well, we also was able to fix my hubby's motility and morphology problem as well. So I don't know what did it.

I see you are in the USA. Try going to a an OB that specializes in infertility. They usually have the letters FACOG by their name. Also, read their bio. The ones that specialize in infertility will say so in their bio. They're more knowledgeable than regular OBs and can do everything a fertility specialist can except for IVF. So cost is more reasonable.

 

[mmdrago]

I finally got in to my regular PCP and he agreed that he would call me subclinical hypothyroid and gave me rx for synthroid. I also have a referral to a reproductive endocrinologist now. I hope that this can give me some hope.

 

[babydustpower]

That's good!

Just make sure you write down the date you started your thyroid medication because you gotta run tsh levels again in 6 - 8 weeks later so you don't overshoot. The OB/GYN will adjust your dosage based on the labs.

When I was TTC, my OBGYN put me on synthroid 25 mcg, the lowest dose. My original TSH was 2.6. The goal was to bring it <2.0 but above (something I can't remember) for conceiving and the prevention of miscarriages and chemicals. TSH labs were ran 6 - 8 weeks later after taking the thyroid medication. He says I have to stay on my thyroid until I deliver the baby.

I finally got in to my regular PCP and he agreed that he would call me subclinical hypothyroid and gave me rx for synthroid. I also have a referral to a reproductive endocrinologist now. I hope that this can give me some hope.

 

[mmdrago]

That's good!

Just make sure you write down the date you started your thyroid medication because you gotta run tsh levels again in 6 - 8 weeks later so you don't overshoot. The OB/GYN will adjust your dosage based on the labs.

When I was TTC, my OBGYN put me on synthroid 25 mcg, the lowest dose. My original TSH was 2.6. The goal was to bring it <2.0 but above (something I can't remember) for conceiving and the prevention of miscarriages and chemicals. TSH labs were ran 6 - 8 weeks later after taking the thyroid medication. He says I have to stay on my thyroid until I deliver the baby.

Ohhh if taking synthroid forever is the worst thing I need to worry about, I would be so happy! I've been put on 25mcg too, PCP wants to check in 8 weeks and keep it under 2.5 (my last one was over 4) but we will see what the specialist says.

 

[mmdrago]

I figure I will just keep adding to this thread until I get to where I want to be. No specialist yet, reproductive endocrinologist doesn't have any appts until Aug.

I have had an HSG and an MRI of my pituitary gland though. The HSG showed my uterus looks normal, one tube wide open, the other had minimal dye through. The Dr. says it could be a stricture or just a muscle spasm. She didn't seem overly concerned about it so I'll try not to stress about that just yet. The HSG was HORRIBLE. I guess I am in the group where the HSG feels like someone trying to sharpen glass inside on my girl parts. The m/c I had naturally at 8-9 weeks didn't even compare to this pain.

The MRI was no biggie. I spent about an hour in the machine hooked up to some dye while they played tunes for me in some headphones. I worked nights and had to stay up for it, so I was glad for the relaxation. I hope to get that report back in the next couple of days. This is the test I am waiting for, to see if I have a tumor that is causing the TSH and Prolactin levels or what.

I have read that hypothyroidism can cause elevated prolactin and galactorrhea, but mine is subclinical. My TSH is high but my FT4 is still reading normal. And the TSH hasn't been over 5 yet. But who knows. I check every now and then if I'm still lactating, and I am. I try not to do it too much so as to not keep my breasts stimulated and encourage more prolactin.

As my chart shows, I ovulated about 7 days ago or so. I had DH reschedule his test so we could DTD, as he needs 3 days without any action before the test. And since my appt won't be until August I figured we could take some time and try.

I am starting to think that either the synthroid is working, or I'm having a "placebo effect". My hands aren't as cold all the time anymore, and I haven't been losing as much hair in the shower. I hope that's a good sign. And if it's just placebo... well... the power of the mind shouldn't be dismissed!

I've been avoiding caffeine, which is really hard with all my teas. I just ordered some more, tons of herbals and rooibos so I have something to drink during my TWW and (hopefully) pregnancy. Rooibos has a TON of antioxidants and NO caffeine.

 

[mmdrago]

So I got my MRI report back... It's not definitive but the impression says "Cannot definitively exclude occult pituitary microadenoma."

I guess there was a 4mm area of non-enhancement of dye in the anterior pituitary which can indicate the tumor. Even if it isn't for sure, what kind of coincidence is this that this area is found and I am having these symptoms? I'll have to schedule a follow up so I can see what the Dr. says. I don't know how normal an abnormal pituitary MRI is. I'm guessing not very.

 

[CaliDreaming]

It must be horrible to think you have a tumor, but I guess these are the kinds that are easily fixed. Also, it's good that you found this out before you got a bfp. I hope this all goes well for you.

 

[diane0508]

I know this is an old post but I was hoping you had an update. I just suffered a miscarriage at 11 weeks and in searching for a reason I came across the TSH factor as maybe being a cause. I went back and checked my labs that were done directly before conceiving and my TSH was slightly elevated but still "normal".