Category Archives: Pituitary Adenoma

The Miserable Bitch

I had my 6-monthly follow up with my endocrinologist last month to monitor my pituitary adenoma. Luckily I had the whole day off work so I was able to rush into the city first thing to get my blood taken (I have to get it taken at the same lab each time), then spend the day exploring the city (by which I mean shopping) before my appointment in the afternoon.

The good news is that my blood levels are all in the normal range. My specialist is so happy that he doesn’t think I need an MRI next year and will step me down to yearly visits. Fewer doctor appointments? I’m on board with that! I still have to get my prolactin levels checked regularly and let him know if they go up again, or if I get pregnant (yeah, right).

The bad news is that after more than six months of nearly-regular cycles during which I’m pretty sure I was ovulating, my body seems to have fallen back into it’s old PCOS ways. I’m on CD 84 with a complete absence of any hormonal signs or symptoms.  Welcome back to anovulatory world! I guess that means no surprise post-IF baby for me. While that’s probably a good thing because our lives are just too hectic at the moment to seriously contemplate adding to our family, it means that I once more have to give up all those dreams. You know the ones: being able to surprise H with the news of a pregnancy, not having to undergo fertility treatment for round two. Basically, it once more kills the dream of having a ‘normal’ experience of family building.

I can live with the disappointment since we’re not planning to conceive anytime soon, but I still think IF is a miserable bitch. And yes, I’ll say that to her face.

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Filed under Baby Making, Round 2, Infertility, Ovulation, PCOS, Pituitary Adenoma

My Morning of Medical Mayhem

After H picked me up from work I had a couple of hours at home to try to relax before heading into the hospital for my endocrinology appointment. Of course the first thing I did was wax my underarms in case I ended up scoring another ECG! Unfortunately H had a very important event on at work so he headed off early and I lay on the couch trying to stay calm and obsessively checking my heart rate.

At about 9 I headed into the city and called my obstetrician’s office on the way. They assured me that I should just come into the office whenever I had finished with my earlier appointment and my OB would see me.

I arrived at the hospital and luckily H was able to leave work to join me. There was lots of waiting… first to see my Endocrinologist, then to get my blood taken, and then to get my visual fields tested. The good news is that my endocrinologist isn’t too worried about my prolactin level. He explained that last year at a major endocrinology conference there was a session on this exact topic – how to manage pituitary microadenomas during pregnancy. Apparently there was a lot of controversy even amongst the experts but the final guidelines were that a PRL up to 4500 is acceptable (I’m only 100 above this) and that the most important investigation is visual field testing. My visual fields were normal – which effectively means that even if my adenoma has grown, it hasn’t grown enough to affect my optic nerve, which would be the sign that we needed to take further action. I’m very relieved about this because I suspect that “further action” would mean having to deliver me early and then either taking some pretty serious drugs or facing brain surgery – all things I’d quite like to avoid, thank you!

I go back this Wednesday to see him and get the results of my blood tests. Assuming all is well he probably won’t need to see me again during the pregnancy. Once the baby is born we might do another MRI just to sneak a peek at the cheeky little adenoma and obviously I’ll need to keep getting my PRL levels checked regularly but I can handle that.

I just need to say how much I appreciate having great doctors. I implicitly trust my GP and she hasn’t put a foot wrong with any of the specialists she has referred me to. My endocrinologist made a point of phoning my OB while I was there to discuss the plan and all the recent research. They also discussed my heart rate issues and agreed on what they thought would be the next best step to investigate that. After the phone call my endocrinologist commented on what a nice fellow my OB was!

And that was my next stop. After waiting in the endo clinic waiting room, pathology waiting room, and ophthalmology waiting room I headed to the adjoining hospital where my OB is based and waited in his waiting room. Thankfully we didn’t have to wait long – he saw us only about 20 minutes after we arrived, which is pretty great considering we didn’t officially have an appointment. In terms of the baby everything was great – perfect heart beat, measuring well, in the head down position, and we even got a (very brief) peek at him via ultrasound. While I was there my heart rate was fine and my BP (although a little higher than usual) was certainly within the acceptable range. We had a talk about my heart rate and discussed a few options. In the end he referred me to a cardiologist. I’ve been banned from any exercise until then, and he gave me a medical certificate because he didn’t want me working that night. I have to say I was relieved about that because after spending half the day at the hospital I wouldn’t have had much time for sleep. AND… because that shift was due to be my last for the week, I now have no more night-shifts left to work during the pregnancy! Woohoo!!!!

So, Part Three in this mini-drama will be posted at the end of next week, after I have seen the Cardiologist. Fingers crossed that all is well!

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Filed under Doctors, Pituitary Adenoma, Pregnancy

The Magic Reappearing Doctor

Yesterday I was sorting through the disaster that is my bookcase looking for an item I had misplaced, when I stumbled across the business card for my endocrinologist. Of course the phone numbers were the same ones I had already tried but the card listed an email address too. I shot off an email hoping that the address was still current, and hoping to get a reply in the next few days.

What do you know? I got a phone call from my endocrinologist less than 15 minutes later!

What a relief. I had tried everything I could think of to locate him. I’d Googled him  – I mostly found him mentioned in research articles or conferences, but nothing newer than 2009 and nothing with a phone number. I’d even called the hospital where his private rooms were previously based, but the number they had for him (although different to the number I had) was also out of date.

So I was surprised – to say the least – when it turned out to be pretty easy to get in touch with him. We spoke for 10 or 15 minutes. He agreed that the rise in my PRL has been more rapid than he was comfortable with, but reassured me that the current level wasn’t so high that he was significantly concerned. While we were on the phone he looked up some very new guidelines for PRL ranges in pregnancy and my level is only very slightly higher than the upper limit. Basically, the plan is that he has booked me in to see him in the public clinic at one of the city’s main hospital next Wednesday. He decided it would be more expedient to see me at the public clinic because there would also be an ophthalmologist there who could formally assess my visual fields.

Here’s hoping I toddle along on Wednesday, get checked out, my visual fields are fine, and we just decide to keep an eye on my PRL for the rest of the pregnancy. I can handle a few extra blood tests over the next 2 months.

~~~~~

I have updated the belly pics page with my 28 week photo – showing the totally different shape of my belly button.

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Filed under Doctors, Pituitary Adenoma

The Case of the Disappearing Doctor

Well, H and I both survived our hectic weekend. Unfortunately we were both so exhausted that we did have somewhat short fuses, and there was a little bickering at times, which isn’t ideal when the MIL is visiting! Luckily we didn’t let ourselves get too carried away.

The Labour/Birth and Postnatal classes on Saturday went well – although we both found that we were having trouble concentrating by the end of the day – but I think they were worthwhile. Most of what we were learnt wasn’t new to me, but there were a couple of new things I picked up and it was good to get a refresher on the rest. Even H felt like he knew a lot of what was covered but I certainly feel more comfortable knowing that we’ve been to the classes. Now there’s just the Breastfeeding class at the end of the month, and we’ll be fully accredited parents, ha!

On Sunday we spent the whole afternoon baby shopping with H’s mum. I think this irritated H a little – he likes to be in-and-out when it comes to shopping. He’s very goal-oriented and hates to browse. He started to get a little ‘titchy’ when his mother or I made suggestions or if he didn’t think we were paying enough attention to his suggestions. He just didn’t understand that a giant baby shop is like fantasy-land to a pregnant lady and a soon-to-be-grandmother. Part of the reason we were there was to enjoy this fantasy, even if we knew that all our hypothesising and grand plans were unrealistic. I mean really, did he think I was actually going to buy the $1,900 cot? 

H’s mother was undergoing treatment for bowel cancer while we were planning our wedding, and was taking a lot of pain medications during the wedding itself and she told me that some of the evening is very vague to her. For that reason it was terribly important to her that she be able to be actively involved in planning for this baby. Once I explained that to H he loosened up a little and let us wander around ohh-ing and ahh-ing at baby clothes. The good news is that we now have our cot – still in its packaging and currently living underneath our sofa bed. This was a gift from H’s parents and I know his mother will love knowing that her grandchild is sleeping safely in a cot that she helped choose. We also bought a changing mat and a swivel changing base to go on top of the baby’s dresser. I love it so much! We’re still waiting for this to arrive but once it does I’ll set it up and take a picture for you.

Today we had our 28 week check-up. It started badly. First, H had an important event on at work. His plan was to try to be there for the appointment but he couldn’t guarantee it. This would have been fine – except that it rained today. All morning. And Melburnians do NOT know how to drive in the rain. I forgot to take this in to account and ended up running late to the appointment. If my darling H had been driving he would have got us there in time – he’s pretty impressive behind the wheel.

Unfortunately, when I did arrive at the hospital (already 15 minutes late) I was greeted by a big fat CAR PARK FULL sign and an attendant who wouldn’t let me in. I was forced to drive around and around (in heavy traffic) looking for a parking space. There were none. In the end I parked in a 15 minutes loading zone and hoped for the best, while running through the rain towards the hospital.

And what did I see when I arrived at my doctor’s office? H’s big, beautiful blue eyes looking up at me from the waiting room couch. Bliss!! It was kinda funny though… H wears a suit to work, but his job requires him to carry a gun. Because he was technically ‘at work’ he came to the appointment ‘fully loaded’, so to say! I’d never even seen a real gun until the first day I saw him all kitted out with his holster, so to be sitting 2 inches away from a gun while in my obstetrician’s office was a little odd. Good on our doc though, he didn’t even bat an eyelid!

Most of the news at the check up was good. Bert’s heartbeat sounded as perfect as ever, my fundus is measuring appropriately, and the OB could tell that Bert has his head down, his back up my left side, his bum under my left ribs (that explains the ache) and his feet under my right ribs. My blood test results are not so great. There’s nothing too serious going on, and he confirmed that I did pass my GTT (whew!). Unfortunately my iron stores are low (my Ferritin is only 6 – yikes!) and although my haemoglobin is in the acceptable range for pregnancy, it’s lower than it’s ever been for me in the past. And… my prolactin has doubled since it was last tested (at about 20 weeks). We knew that my prolactin would increase in pregnancy, but the hard part is deciding how high is too high. There are no “normal” ranges for a woman with a prolactinoma in pregnancy.

In terms of the prolactin, my OB wants me to go back to see my Endocrinologist again. He thinks that I should at least get my visual fields formally tested to make sure there hasn’t been growth of the tumour causing it to affect the optic nerve. The serious downside to this is that if my Endocrinologist does think I need to start treatment (which would happen after the baby is born) it would make it absolutely impossible to breastfeed. Sigh.

The last time I saw my Endocrinologist he mentioned that his office was moving. Yesterday when I tried to call him all the numbers were changed or disconnected. I called the hospital were he was based and they too had an old number for him. I can’t find him listed online at all. So…  how on earth do I get in touch with him?

The upshot of my iron deficiency is that I have to start eating more red meat (I’m not much of a meat eater) and if that doesn’t work I’ll need to start iron supplements. H was quite excited about the prospect of red meat every day! When I discussed this with my dad (because he likes to be kept in the loop after every OB appointment) he was quite concerned and thought that with a Ferritin of 6 I should have been starting the iron tabs straight away. Apparently a baby born low in ferritin has twice the likelihood of needing to be admitted to hospital in the first 12 months of life with infective illness than one born with adequate stores. In the end we agreed that I’ll try to improve my dietary intake, get retested at 34 weeks, and start the tablets then if I need to.

And after my appointment yesterday I came home and made myself a steak sandwich for lunch. What an obediant girl I am!

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Filed under Baby Stuff, Doctors, Family, Non-IF Stuff, Pituitary Adenoma

Fear – Revisited

I’m worried. I’ve written before about the failure of my breasts to do anything remotely breast like, and my concerns about my future ability to breastfeed.

Today I was reading Jill’s update on her blog about her current issues with breastfeeding, and clicked over to this link that she posted about PCOS and breastfeeding. It feels like the final nail in my breastfeeding coffin.

 Nail 1: I did not experience any galactorrhoea (milk production) when I had very high Prolactin levels from my pituitary adenoma (which is often the prime symptom).

 Nail 2: My breasts have not changed at all with pregnancy. Not one little bit. They haven’t been sore, and they haven’t grown. I can still fit all my pre-pregnancy bras. While I’m not upset that my DD or E size boobs haven’t expanded into F or G cups, it does worry me that they have remained so inert.

 Nail 3: PCOS and it’s link with hypoplastic breast tissue.

Interestingly, I’ve never heard a single doctor mention the link between PCOS and inability to breastfeed, and I’ve never read it in a text book or journal article. I asked my father about it (which will seem less bizarre once I point out that he’s an obstetrician) and he doesn’t believe that there’s a correlation. But I have to say, the physiology that was (albeit briefly) described in the LLL article does seem to make sense.

The upshot of all that: I’m worried.

At the end of the day, I realise that I am incredibly lucky to be pregnant, and if I can’t breastfeed I will still have a healthy and happy baby (hopefully!). But just like I have imagined that moment when the doctor announces “It’s a girl!” or “It’s a boy!”, so I have imagined breastfeeding my baby. Looking down at my child’s cute button nose pressed in to my breast, feeling that connection, knowing that I am nurturing them.  If I don’t get that experience, I know that part of me will feel just a little bit… ripped off.

In temporally and anatomically related – but contextually unrelated – news, I was hanging out the washing this morning a felt a tickle in my cleavage. I looked down expecting to find a stray hair or piece of lint, and what I found instead was a spider. There was a spider! In. my. bra.

I hate spiders and was so freaked out that I had to call H mid-hyperventilation so he could calm me down. There I was, outside by the clothes line only 2 metres from the neighbour’s house, desperately trying to get the spider out of my bra without touching it, and almost completely disrobing in the process.

My breasts may be a useful spider-catching tool, and they certainly make my clothes fit nicely, but I’m starting to worry that they won’t ever fulfil the purpose for which they are actually intended.

I guess only time will tell.

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Filed under Fear, PCOS, Pituitary Adenoma

Occupational Hazard

I started my Clomid last night, and today I was a bit of a wreck. I don’t have any physical side effects but after H’s less-than-subtle comments last cycle I’m was alert for mood changes. I had a rough day at work today, and to be fair I can’t really blame that on the Clomid, but it does seem to impede my ability to cope. Sometimes today, in an endeavour to distract myself from tears, I imagined Clomid as a balaclava-clad criminal who had hand-cuffed and hog-tied my usually resilient coping skills before locking them in the trunk of an abandoned car. I wanted to cry. I wanted to yell. I wanted a nap. And, dammit, I wanted the keys to that trunk!!

It’s not really the Clomid at fault though. To be truthful, it’s been a rough week at work. It’s busy, and we just don’t seem to be able to get on top of our workload. But that is only part of the problem.

At the moment I work on a psychiatric ward. Challenging work at best, and occasionally distressing. But this week I have found it difficult for a new reason. We have a patient on the ward who has been very unwell but who is thankfully getting better. I have been involved in several in-depth discussions with her this week. Just like all of us, she has many problems. One of her major issues is that she has been through 10 years of IVF treatment. She does have one child, but she has also suffered numerous failed attempts, side effects, and miscarriages. She’s undergone two laparoscopies. And recently, when it became clear that at 48 years old there would be no more pregnancies, she had to make the decision to destroy the last of her frozen embryos. She sobbed as she told me this. To her, these embryos were her child’s brothers and sisters.

I don’t want to suggest that infertility or IVF are the reason this woman is unwell. She had mental health problems for some years before she began fertility treatments. But it was clear listening to her that the whole experience has been hugely traumatic. She refused any blood tests when she was admitted to hospital because after so many blood tests and injections during IVF she now has a needle phobia. She has so much scar tissue in her abdomen from laparoscopies and a caesarean section that she developed a sub-acute bowel obstruction this week. Her marriage has slowly disintegrated while she focussed all her energy on IVF and her husband withdrew emotionally to avoid the pain and disappointment. They gave up on sex years before they finally gave up on IVF.

As if this story was not already too close to home, I soon discovered another commonality. She too had been diagnosed with a pituitary adenoma. She was treated with the exact same medication I was due to start before my Prolactin levels mysteriously normalised, much to my Endocrinologist’s amazement. This medication, Bromocriptine, seriously messes with the Dopamine levels in your brain and one of it’s more serious side-effects is psychosis. When my doctor discussed this drug he told H that he would need to be vigilant about monitoring my mental state. H, ever the jester, postulated aloud that Psychotic Tio probably wouldn’t be all that different from Everyday Tio. It might seem like a cheeky comment to make in a doctor’s office, but it made me smile. This comment reminded me that my darling H wouldn’t let me take things too seriously, and it told me that he wasn’t scared to face whatever might lie ahead.

But this woman, who already suffers from psychosis, needed to take a medication that causes psychosis in order to have a chance at conceiving. How much scarier can it get?

I tried to remind myself that to some degree, her story is one of success. She has a child that she adores. But I just couldn’t shake the horrible feeling that to some degree, this woman will never recover from the trauma of IVF.

It was confronting to sit and listen to this story. I wanted to reach out and hug this woman, but I could not. I wanted to cry, but I could not. I wanted to excuse myself from the room, run from the building, drive desperately home and give H a great big hug. But I could not.

I have had a sobering reminder this week of just how destructive infertility can be.  I am going to have to carefully assess my emotional state tomorrow before I decide if I can walk back into that interview room.

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Filed under Clomid, Infertility, Photos, Pituitary Adenoma

The Right Side of the Bed

Today is a better day. It’s amazing what a good night’s sleep can do.

Today my hope is back. Today I got up on the right side of the bed! I slept in til 8am. I went for a run. I found out my husband has been offered a great new opportunity at work. The results of my MRI are excellent, the tumour is still 4mm, and I don’t need another scan for 4 years. My blood PRL levels have doubled but are still in the normal range – once I get pregnant and during breastfeeding they will need to be monitored closely but the rest of the time I only need two blood tests a year. I had a wonderful lunch with H. We went to my financial advisor who told us we can afford to buy a better house than we thought. I took the whole day off work. I felt a little nauseated (although it was after bolting down a huge chai latte, so I’m not going to read too much into it!). Today I have no more phantom period symptoms.

At the moment I have a tomato and ricotta tart in the oven which I am taking to a girls-only picnic at the open-air cinema in the Botanic Gardens. Life is good.

Thank you all so much for your support yesterday. After writing the post and reading your comments I didn’t need to have that cry after all!

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Filed under Infertility, Non-IF Stuff, Pituitary Adenoma