My CCRM IVF Journey

Our successful journey through IVF #2 at one of the world's top fertility clinics

The Verdict

Posted by auntiem10 on April 30, 2010

I heard back from CCRM a little while ago, and Dr. Surrey wants me to see an endocrinologist ASAP. He won’t proceed any further until my thyroid levels are under control. My local OB also apparently faxed a letter to CCRM stating that her position is that I should see an endocrinologist, so it’s unanimous.

I’m planning to research in-network providers this weekend and ask my OB’s office Monday morning if they will try to schedule an appointment with an endocrinologist on my behalf. When my results came back wacky last year, I did try to schedule an appointment with an endocrinologist and was told that I would probably have to wait 4-6 months just for an initial appointment! I now regret that I didn’t follow through with scheduling an appointment after our IVF cycle failed, but my local RE had made me feel dumb for questioning the abnormal results. Live and learn.

The CCRM nurse said that they will get involved in scheduling the appointment if necessary, but they don’t want to immediately portray themselves as bullies. It humored me when she said, “If they give you any trouble, you tell them that Dr. Eric Surrey will be contacting them to discuss this matter.” LOL. Hopefully my local OB’s office can pull some strings and get me an appointment relatively quickly (they closed at noon today, so that’s why I have to wait until Monday to contact them).

I am actually happy about this development, because I know CCRM is taking steps to ensure that I’m as healthy as possible when we do cycle. I don’t mind waiting a little longer if it means that my thyroid levels can be tamed. Plus I’ve felt for years that I exhibited symptoms of hypothyroidism–fatigue, always feeling cold, inability to lose a significant amount of weight even with healthy diet/exercise, hair loss when I blow-dry my hair, charlie horses in my calves. I’m guessing that at least a few of these symptoms are related to my thyroid function. Maybe a little medication will help!

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6 Responses to “The Verdict”

  1. Cassie said

    Hmmm…now you’re making me think I should get my levels checked too. Though wasn’t that part of the ODWU? I feel like I have a lot of those same symptoms, though I’m not usually cold. I hope this helps you!

  2. auntiem10 said

    Hi there! I think the TSH level is normally checked as part of the ODWU or is ordered during the required annual exam. However, the nurse herself told me today that they don’t usually check the TPO antibody level. I think the only reason Dr. Surrey ordered this test for me is b/c my local RE ran the test last year, and my level was way too high at that time. A high TPO antibody level indicates that antibodies are present in the blood that attack healthy thyroid tissue. This can be an indication of thyroiditis, and when the TSH level is also elevated, it is an indication of hypothyroidism. The symptoms are oftentimes very subtle (my mom lived with them for years before finally seeing a doctor and getting diagnosed), and I don’t think it could hurt anything to have your blood tested for the TPO antibody result! If nothing else, it will give you peace of mind!

  3. Rebecca said

    I will try to refrain from assvice, but speaking as someone who was diagnosed with a thyroid imbalance in 2008, had surgery to have the sucker taken out last year and is just now getting ready to do an FET next week at your clinic, I will say that my experience has been that I had to advocate for myself 100 times more when it came to getting appropriate care for my thyroid as compared to needing to advocate to get appropriate care for infertility.

    It’s JMO, but most doctors (including endocrinologists) 1) don’t seem to think thyroid issues are that serious, and 2) treat the lab results, not the patient. I would encourage you to stand your ground if you don’t feel that you’re getting adequate treatment, because it can make a huge difference to both your general health and your fertility. It took me 11 months and 3 endos to find one who would help me. (I had a thyroid that was mostly hyper but would sometimes fluctuate to hypo, and one endo even went so far as to say most endos don’t treat hyper unless the patient is starting to develop congestive heart failure!)

    A couple of things about thyroid meds: I’m usually open to generics, but a generic can have up to 20% more or less active ingredients than the brand. My DH was dx w/Hashi’s hypo several years ago, and our family doc at the time said that while he supported generics in most cases, thyroid meds are given in very small doses (micrograms instead of milligrams) and the 20% can make a huge difference so he wanted him to only take Syn.throid, so that might be something to ask your doctor about.

    And in my experience, most endos are opposed to a drug called Cytomel, which is T3. The objections that were expressed to me were that the body automatically turns T4 (Syn.throid) into T3 and that it would be discovered when you’re an infant if that wasn’t happening in your body, and that T3 has a very short half-life so has to be taken at least twice a day. However, if a doc writes the script for “sustained release” you can take it to a compounding pharmacy and they can put it in a sustained release capsule.

    The reason I mention this is that without a thyroid, I’m now hypo. My endo would only prescribe Syn.throid, so after the surgery, I still had some hyper symptoms (racing heartbeat, feeling keyed up), but my skin started to dry out to the point that it cracked, my hair became coarse and crunchy and fell out in clumps, I couldn’t stay awake for more than 8 hours at a time, I was gaining 2-3 pounds a week despite eating super carefully. My TSH and T4 were abnormally high, and my T3 was just below the midpoint of the normal range. I went to my family doc and she lowered my Syn.throid a bit and gave me the smallest dose (5mcg) of Cyto.mel. (I had to ask for it, she didn’t just automatically offer it). My skin and hair are now back to normal, I can stay awake like a normal person, no racing heartbeat, etc. My TSH is still abnormally low (0.20), but T4 and T3 are both at the upper end of the normal range, so I think I found the dosage that’s right for me.

    It was only after a few months of feeling balanced that I felt like it would be safe to try an FET. So I will get off my soapbox now and say I hope you are able to find a great endo and get your thyroid issue resolved and your health restored very soon.

    • auntiem10 said

      Thank you so much for your comment. I had never before heard of Cyto.mel, so that is something I will definitely keep in mind. I definitely had a discouraging time last year with my local RE blowing off the high TPO antibody level, and now I know that I should have advocated more for myself (especially since we proceeded with an IVF cycle that in hindsight was probably bound to fail). I really hope that I can seek an endo that will help get my body back to normal.

  4. Hi.. here from My World My Ramblings. I am planning to cycle at CCRM too. Seems like you are I are in the same boat as far as the TSH goes. Mine was also high and have had to talk to my endo to increase my meds. I have extremely high antibodies to my thyriod — diagnosed with Hashimoto’s in Dec. I have to retest in 3 days to see if my TSH has gone down! Hope you are able to get your TSH low too. Looking forward to following your blog.

    • auntiem10 said

      Hi there! Thank you for your comment! It does sound like our thyroid issues are similar, and it is nice to know that there are others in the same boat (although I wish neither of us had these issues!). Now that you are taking medication to lower your TSH, are you feeling better overall? I will have to check out your blog!

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