Is DHEA making me fat?…Why my ovaries are like dogs…And other stories.

Has anybody else put on weight while on DHEA? I’m up ~4 pounds since midsummer (and ~7 since 15 months ago when I was pregnant, but I can’t really blame DHEA for those extra 3 lbs…) DHEA is an anabolic steroid, and anabolic steroids cause weight gain, so I think it’s possible. The other reason I’m inclined to blame the DHEA is because of where the weight has been going. Not to my hips, thighs and butt (like usual), but straight to my belly. I have a beer gut. And now that I have to start dressing professionally again, all my work clothes are either unflattering, uncomfortable, or both. Ugh.

So, as you all know, we had our phone consultation with Dr. Schoolcraft on Monday. Overall, it went pretty well. (You can find his answers to my long list of questions here.)

Here are some other tidbits from our conversation with Dr. Schoolcraft that didn’t directly pertain to our questions:

  • Dr. Schoolcraft was late. He called us almost 40 minutes after our scheduled time. This wasn’t so much a problem in itself (the nurse had warned us that it was often the case), but – ever the healthcare practitioner – C pointed out that if he was that far behind schedule (it was 5:40pm his time), he almost certainly didn’t stop to look over our file before he called.
  •  Judging by the conversation, Dr. Schoolcraft almost certainly hadn’t reviewed our file. Again, this might have been fine in itself. (His answers were thorough, and he didn’t make us feel like he was in any rush.) But we found it annoying that we went to so much trouble to get our records, and to fill out an annoyingly detailed (and poorly designed) health history form online, if he wasn’t even going to read it. And, we now have one more question…which wouldn’t bother us if we felt like he had actually read our file before calling. (Specifically, we spent a lot of time with him talking about low-stim versus high-stim, the underlying assumption being that we had only tried low-stim and don’t know what would happen if we increased the dose…somehow we all forgot to consider the fact that we in fact tried IUI with pretty high doses of Menopur – 5 vials per day – and only got 2 follicles developing. I know that IUIs are different – I couldn’t take stims for as many days because I wasn’t taking anything to suppress ovulation – but still, the scientist in me is frustrated to think that we neglected an important piece of data!)
  • Dr. Schoolcraft thinks I have a “poor prognosis”. He just sort of let that slip out in the context of some comments about comparing SART stats between clinics. Not that it came as any big surprise, but it was more direct than Dr. Y has ever been (though not as bad as when Dr. L said I would go through menopause before 40…) I think it’s a good sign; it’s consistent with what I’ve heard from other patients (who described him as “direct” and someone who “doesn’t mince words”) and the last thing I want is a doctor who’s going to blow smoke up my ass…but it still stung.
  • I thought Dr. Schoolcraft’s advice for comparing SART stats was very interesting. He mentioned (and I’d heard before) that some clinics manage to inflate their stats by refusing to take patients with a poor prognosis (especially older patients). His advice, therefore, is to compare the ‘% of cycles resulting in live birth’ specifically for women under 35 (where there will have been the least selection bias). If you want to compare the quality of different embryology labs, then look at the success rates for donor cycles. It’s not perfect, but I thought it was an interesting way to get around some of the stat manipulation.
  • Naturally, the first thing C and I did after getting off the phone with Dr. Schoolcraft was to compare the SART stats for our local clinic to those for CCRM in the categories of women under 35 and donor cycles…and while CCRM was better on both counts, there really wasn’t a huge difference. So our lab really does seem to be quite good. But we also considered Dr. Schoolcraft’s point that CCRM sees mostly out-of-state patients who have already failed one or more IVF cycles. In other words, they see a disproportionate number of ‘hard’ cases. And yet, their stats (in just about every age group and diagnosis) are higher than anybody else’s I’ve found. This seems to back up Dr. Schoolcraft’s claim about having the best lab.

So, despite our mild annoyance, and “poor prognosis”, C and I decided that we should at least make the appointment and do the one-day workup. It’s not cheap, but it’s thorough, and after getting the results, we’ll be able to have a better sense of whether it’s worth our time to continue with my eggs…

C made the point that every month to my ovaries is like years to a normal set of ovaries. (My ovaries are like dogs, apparently.) And also reasoned, “We’ll probably spend money on a lot stupider things.”

I’m not feeling very optimistic about our chances of getting pregnant – even at CCRM, but it feels like something we have to do to feel like we’ve done everything we can.

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19 Comments

  1. Your sentence “but it feels like something we have to do to feel like we’ve done everything we can.” reminded me of Kimberly’s (NoGoodEggs) post about how infertility treatments can be addicting. (http://nogoodeggs.wordpress.com/2013/08/22/is-fertility-treatment-addicting/, not sure if you read her blog.) It’s always amazed me how a new doctor, medication, treatment or symptom can give us so much hope.

    That being said, I truly hope that CCRM is what you need to get your baby. I’ve been interested in following women who fly out there for treatment, so I’m excited to follow your story. I wish you the best of luck and hope that this is it! ❤

    Reply
    • Thanks Aislinn. 🙂

      I love Kimberly’s blog! And yes, I agree that IF treatment can be addicting. In a way, that’s part of the reason we ‘jumped’ to IVF after just one IUI, and are now jumping to CCRM after just one failed IVF cycle at home. We figure once we’ve tried (and failed) there, there would be few new sources of hope or reasons to keep trying.

      But of course, at that point, we may decide to head down the path of donor eggs…and if Kimberly has taught me anything, it’s that I can’t count on donor eggs to be the magical fix for infertility!

      Reply
  2. I’m both sorry and happy that the doctor was so blunt. It hurts to hear. But as you say, you want the real picture, even if it’s bad.

    RE DHEA and weight gain, would you like me to put that question to CHR experts? Not sure if you saw my post on that: http://ivffervescent.wordpress.com/2013/08/28/submit-your-dhea-questions/

    Personally I haven’t noticed any weight gain with DHEA. If anything my muscle tone has increased but I’ve also just switched to a more intense yoga practice so that could be why. I’ve also been getting (TMI alert) weeks of diarrhoea, not sure if it’s DHEA related?

    Reply
    • Sure! Why not ask. No diarrhea for me. If anything, my supplements have had the opposite effect…

      Reply
      • Cool. Let me know if you have any other questions too, as I know you’ve looked closely at DHEA and the various studies. You’re quite the cerebral goddess 🙂

  3. I haven’t gained weight on DHEA, but I’ve been pretty committed to my exercise regimen ever since packing on about 10 pounds due to infertility-related depression and inactivity last year. If anything, I think I may have put on more muscle, which kind of makes sense since it’s a steroid. Cool, I’m a ‘roid monkey!! Interesting results from the consultation. I kind of wish Denver was an option for us, but then again I’m pretty sure I’d be “poor prognosis” too, and then after Denver we’d just be “poor”. 😉

    Reply
  4. I in general have gained about…. three or four pounds. I don’t know what it is from. Could be the stimulation medication and/or DHEA. My diet habits and my exercise routines have not changed. So I don’t know. It could really be a side effect of DHEA.

    I would really hate it if the doctors that I consult with don’t review the files. All of the doctors that I consulted with are extremely busy. And all of them read our files before speaking to us. I’m sure Dr. Schoolcraft is extremely busy but it doesn’t give him an excuse not to review files. I don’t like the wording “poor prognosis”. There could be a better way to say things. I don’t know. I guess I’d be very annoyed with this doctor. Hahaha.

    Reply
  5. He’s definitely…*direct*.. I hope that no-nonsense approach is exactly what it takes to find a solution. I don’t think I could have handled that call, so kudos to you. That took strength.

    Reply
  6. I’ve always said that when it comes to doctors, I would rather have one that cuts straight than one with a good bedside manner. That being said, sometimes the truth hurts. I’m sorry for you for that.

    I would have been rather irritated that he failed to review your file specifically as well. That being said, I’m sure his attitude (and my FS’s attitude) was that he’s seen it all before, and knowing the specifics likely wouldn’t have changed his answers. I find that fertility clinics are a lot like factories- just trying to churn out as much product as they can to increase profits. Even if your doc behaves like a jackass, you can always count on us to hold your hand!

    I’m going to say to you what has been said to me… and what I have repeated over and over… it’s all about regret management. You have to make choices that you will be able to live with 10 years, or further, down the road. No matter how this journey ends, you want to have peace of mind. Under the circumstances, I would do the one-day workup as well. And I sincerely hope it brings you some better news. Thinking of you…

    Reply
  7. I’ve learned that even when I’m behind and patients are have been waiting long, if I don’t review my notes or prior records, something will come up during the interview to expose me as being unprepared. I’ve accepted that I’d rather have the patient wait a few more minutes so that her visit is more productive. I’m sorry that his bluntness was so sharp, but I know as a scientist, you appreciate that he’s interpreting data. That being said, stats are what they are -stats. When I was at a conference last year, I was listening to a handful of REs all discussing how many Yelp reviews they have of a woman holding her biological twins after they had recommended donor eggs. I appreciate your honesty with your CCRM experience. Jessah at Dreaming of Dimples, gives a great recount of her experience with the one day work up (your credit cards will get a work out) but one aspect that I think is effective in their approach is that they do a hysteroscopy. Although, I know you didn’t get to the point of transferring, evaluating the uterus can be considered part of the regret management that catwoman73 describes. The pompous inappropriate RE I referenced I one of my previous posts (I didn’t want to name and shame on my blog, but I can email you his name) does argue for doing a hysteroscopy prior to a transfer, as often it’s performed after implantation failures and low and behold reveals some abnormality. Does the fact that CCRM H-scopes everyone account for any of their success rates? It’s a question for them and others to analyze.

    Reply
  8. Yes, he is blunt. It stung for me too, but I’m not under any delusions at this point, and like you, I opted for the best to feel like, if I had to close the book, I would know it wasn’t the result of my failings. So I hear you there.

    Something to keep in mind with CCRM’s data is that 80-85% of their patients do CCS testing, which prevents them from being included in the fresh OE cycle data, and they only get included in the FET data IF they (1) have embryos survive to blast and (2) those embryos test as genetically normal, which, in effect, filters out most of the patients who would hurt their stats.

    That said, this cycle is going better already than any previous cycle just as a result of protocol, and the staff is really friendly and professional.

    Reply
  9. I would like to blame DHEA for my weight gain! Let’s stick with this.

    Reply
  10. Oy… I’d probably be in tears at a doctor telling me I have a “poor prognosis”, regardless of what health condition it even pertained to! But I agree with you — better to have him be straight up about it and not lead you down a path you’ll only be disappointed in. You’re making all the right decisions here, so you just have to deal with what happens when it happens and go from there.

    I think you should give your ovaries dog names… Like Rover and Lassie? 🙂

    Reply
  11. It’s so annoying when they don’t review your file! And yes, that health history online firm if theirs sucks.

    It sounds like you got the info you were looking for even though it isn’t great news. Good luck on the next steps.

    Reply
  12. I’ve been absent for a while wallowing in financial self-pity and agonizing over the savings for my first (and probably) ONLY IVF cycle. Anyway… I started (and then stopped — see previous comment about self-pity) my own long list of supplements (http://itsgonnatakeavillage.blogspot.com/2013/06/supplement-cocktail-2-week-update.html) , including DHEA back in June. I had to stop taking the DHEA because it was making me crazy! I was a ball of emotions and up then down, then up again. I cried, I screamed, I wallowed… it was awful! I have dropped the dosage this week when I resumed the supps and so far so good. I am thinking of upping it again next week slightly. I didn’t notice weight gain — but then I have been on a healthy kick since February and have so far lost over 40lbs. I’ve certainly noticed increased muscle tone, but that is most likely from my new weight lifting regimen. I LOVE your blog. We have the same diagnosis, we are of a similar age (I have just crossed the 35 yr old barrier) and I LOVE how you break down all the “sciency” stuff in a way that my brain can process. THANK YOU!

    Reply
  13. Rachel

     /  September 25, 2015

    I would like to start by saying thank you for updating your blog even occasionally! My temp dropped this morning after a glorious bfp hpt last night I’m only 12 dpo and the temp drop could have been from anything but the worry set in. Seeing that yours dropped later and you had a healthy pregnancy that ended with a beautiful son made my worry drift away I have 3 days until I can get confirmation from my doctor so holding on to hope is something I needed and you gave it to me! Thank you!

    Reply

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