Low Carb Diet

Amongst acromegaly patients, it is relatively well known that the symptoms can be greatly reduced by maintaining a healthy diet. When I first joined the facebook group, I could find posts about diets that helped and methods that worked for people. It was already apparent to most that carbohydrates (pasta, bread, rice, potatoes, but especially sugars) had a negative effect; the symptoms would become more prevalent (for example water retention, joint aches, tiredness, headaches…).

Slowly, but steadily, western medicine people (doctors and such) come to realize that food may have a bigger impact on health than previously thought. (When I first came to the hospital specialized in this disease, they told me there were no diet recommendations…). Currently, my doctor is researching the impact of a low carb diet (ketogenic) on blood values that are typical for acromegaly patients. She is aiming for a proof of concept: showing that a low carb diet has positive effects on the short term.

So when she asked if I wanted to join her study, I agreed. I have been experimenting with what to eat and how to make myself feel better. This study wouldn’t be too hard. Just two weeks of eating no carbs. No chocolate, no chips, no fries, no bread, no fruits, no rice or beans, obviously no sugar: a purely ketogenic diet. Meaning: with this diet, my body would have to make energy out of fats and not out of carbohydrates. Two weeks. How hard could it be? To make matters easier, my sister decided to join in on the diet. Thinking shared pain is half the pain.

Turns out, although it wasn’t particularly hard, it got boring quite fast. From my experience with intermittent fasting, I already knew that not eating could be confrontational. But this eating without taking any carbs was more torturous than not eating in my opinion. Eating got boring, the fun was taken out of it. The first few days are supposed to be the hardest, as your body adjusts to burning fat instead of carbohydrates. This switch was harder for my sister than for me 🙂 A week was doable, but halfway through the second week, I was fantasizing about what I would eat once I was done. By then my sister quit altogether. This mostly had to do with a weekend getaway with my parents that contained a lot of my sisters’ favorite carbohydrates. I persevered.

At the end of the two weeks I was asked to join a study to take less than 80 grams of carbohydrates a day. But this turned out to be too hard for me. Additionally, in my regular diet I don’t eat too many carbs anyhow, but the ones I do eat, are mostly found in chocolate… oops 😉

As far as blood values go, at the beginning of the study, I already had a new all-time low value (IGF-1) without starting the study. Which indicated to me that intermittent fasting is working for me.  During the study, this value increased slightly. This indicated to me that it didn’t do anything different (values tend to rise towards the end of an injection period).  The value also didn’t decrease. And since I know that for me intermittent fasting works and is fairly sustainable in my lifestyle, this has my preference. (It needs to be mentioned though, that I didn’t stop my 16:8 regime during these two weeks. To maintain a similar eating pattern for a fair comparison.)

Still, it was fun to participate as a form of experiment. And I am still curious as to some other findings. When I  find her article on this study (I suspect it is not published yet) I will include a link to it.

In Love

Yep. I really don’t know how it happened. Turns out falling in love is quite easy. Who knew? I certainly didn’t. It is such a natural feeling, I am truly amazed. It also happened quite unexpectedly.

A friend of mine decided to date a man every week of the year (I know, right?). She didn’t like to date but thought if she really wanted to get a man, dating was a necessary evil. So she dated. It took her not 52 dates but only 14 to find the man she is now married to.

Following her example, I decided not to date 52 men in a year, but to at least date every once in a while. Since I had already decided I would attempt to date in late 2018 (medication intake normalized and hormone levels more in sync), I took to the dating apps again (not Tinder). Determined not to go for the ones who only wanted one thing and to not let anybody ask me if I really was born as a woman (yep, that really happened), I gathered up all the positivity and hope I could find and swiped my way through the eligible men.

I had some criteria:

• No bare-chested pics
• At least one pic without sunglasses

Okay, so I had two criteria before matching… Perhaps I’m not that picky after all! 😉 After matching I also had some criteria:

• No talk about sex
• No asking for my number before ever meeting
• No endless hearts and overload of superficial chitchat

I didn’t want too many matches at the same time. So I took my time. I also initiated the chat when I felt like it. Waiting around is such a lame thing to do.

So, this guy was one of the first I matched with. I initiated digital verbal contact. After establishing we had mutual interests, and some conversation throughout almost 2 weeks I think (great spelling and use out interpunction were a big plus!), I was also the one who suggested we’d meet, you know, for coffee. Why coffee you may ask? Well, you don’t want to be there too long when you find out the date and you don’t match at all. Coffee allows for a swift ending without being too rude…

So, we went out to dinner (obviously his suggestion, I only agreed because our mutual interests were the good kind), a complete three-course meal. And since I had just gotten my injection the day before, and was nervous since dinner meant no swift escape, my appetite was almost reversed.

He was early, so I had no time to fuss about with clothes, hair (on purpose not washed since I didn’t want to make my best effort) or make-up (yes I did wear make-up). And raced my bicycle to the place where the meet up would take place. We were the only guests in the restaurant (a couple of weeks before the holidays, on a weekday, perhaps it makes sense). The waitress was worried she was being too loud…

But it was nice! I have the capability of being too polite and keep the opposite party talking, which can be mistaken for interest. So I purposefully kept quiet every once in a while to see how he would handle that.

He handled it well, probably didn’t even notice I did it. He was unfazed and not in the least bit nervous, which put me at ease as well. This allowed me to actually be able to swallow my food (thank god the portions were modest).

So I surprised myself by saying yes to having a drink after dinner. I’m not really sure what made us click, but to me, it felt really comfortable and easy-going. Those may not be the sexiest terms to use in describing a first date, but they made me feel at ease and interested enough to go on a second date.

Status update

The magic pills are awesome. I’m feeling more like myself nowadays 🙂 it is super strange to reflect on the events of the past year and how I changed, internally, externally… Let’s call it intense. The change in energy levels, combined with work, moving and the calisthenics course has also taken some toll. Resulting in me falling sick a time too often for my liking. At times I’m wondering if the energy I’m using is actually mine, or if it is just the pills. In the meantime, I try not to worry about it too much.

Hard? Yes. But I suppose it is for everybody, with or without meds. Moving is just an intense activity and life event, even when not combined with a course, work and changing hormone levels 😉 I might’ve underestimated that slightly.

In other news, my thyroid hormone dosage has been increased. The docs decided it was necessary, seeing my lab results. They also asked if I’d lost additional weight since starting on these pills. That wasn’t the case though. (It is strange how a stable weight is very very very satisfying for me.) It does mean I may lose more weight in the foreseeable future 🙂 And as it may be, I recently promised my sister that I’d join her on her quest to lose 4% of body weight… So perhaps I don’t have to ration myself as much as I thought I would 😉

 

Magic pills

For a while now I’ve been wanting to write. But I couldn’t seem to find a suitable topic.

I may have mentioned before that I’ve been taking things day by day. This is nice and doable. I won’t even try to wrap my head around the chronic illness.

It basically means I am feeling my way through life. The basic things, like I feel tired, hungry, thirsty, sad and consequentially I provide myself with what I need at that moment. Other then that, I am not doing that much. Surfing every once in a while. I joined a gym, but I only go once a week at the most.

As some of you may know, every 3 to 4 months I have to return to the hospital for an evaluation of my blood values.  Which is fine, since I would like to be or at least feel healthy too.

A month before my most recent appointment, I felt really weak. And that is not something I am used to. I had some tremors in my hands, was light-headed, dizzy, and a bit nauseous. Since these things are listed as side effects, I sought contact with my doctors. They pointed me to my local GP (general practitioner) (which is huisarts in Dutch) to check my blood iron levels. The GP also added some other items to check upon. And so it came to be that we found out my thyroid isn’t working as well as it should.

Although I didn’t want to take more medication, I am now on new pills, once every day. These pills though, are magical.

Along with the physical side effects, some psychological discomfort has disappeared as well. For the last half a year my thoughts have been a tad darker, more somber, some may say downright depressing. I’ve not been enthusiastic and didn’t experience a lot of fun. I even walked around like a zombie from time to time, especially the days after an injection. Sometimes not even able of picking up on cues for jokes. Highly frustrating, if I could have felt that, that is. Since I was so numb, I didn’t feel a whole lot altogether. Everything seemed pointless. (This is not a good place to be at and I was very aware of this! Sought help and everything.)

These pills though… They make everything better! Physically I am doing good, amazing things are happening (and with this I mean that regular bodily functions are now again normal! Which is amazing and I enjoy it very much, but it is weird to say that my toilet going experiences have improved so so much 😉 needless to say, they were unpleasant before the magic pills).

My sense of humour has returned, my enthusiasm, my upbeatness, quick witted-ness (if I may say so :D), my energy levels are back up! I get hungry again! I’m not nauseous anymore, and I don’t even walk around like a zombie after my injection!!! It is absolutely awesome.

Of course, this is great news, and for me great to experience. I enjoy every minute of it.

The downside is, that for the last half a year I have been feeling like crap, even though there was a simple way to fix that. Almost all the posted side effects are explained by the slow working thyroid. The fact that my body isn’t working as it should (and the normal rules don’t apply anymore), combined with the knowledge that I could have been feeling so much better gets to me sometimes.

But then I remind myself that I am taking things day by day, I check how I feel, and today is a good day 🙂 and I can let things go.

 

 

Side Effects: Mood swings

Most of the physical side effects I just wait out. I am used to my body changing. It is sort of funny to experience it yet again. But the timespan now is a bit shorter 😉 I am not sure where it is going, but I am not worried too much.

The side effects that do worry me though, are the mood swings. I think it is mainly because of the reduction of steroids that I now am so hyper-aware of my mood, or hyper-aware of the effect of certain hormones on my mood. If that makes any sense at all… Now I can feel like shit from one moment to another, for no apparent reason. And people notice! My colleague laughed his ass off when I was telling a couple of bulbs off for not growing flowers fast enough…

I still have to learn how to manage this. But in the meantime, I am letting it get me down. It literally drives me crazy. I can’t (yet!) snap out of it by myself. And it feels like going insane. Or at least, that is what I suppose it could feel like because it is hard to recognize myself at those times.

I suppose that my cycle and my medical treatment together don’t really have the best effect on me mentally, or the stabilising effect of the steroids (nobody ever described steroids like this, to me, it is a calming blanket) has been rudely stripped away. Combine this with the fact that the diagnosis is finally starting to sink in a little bit, and it makes sense for me to seek out help to get me through this particular rough patch.

Side Effects: Physical Discomfort

Before the treatment, my body had a lot of steroids. You know, the stuff bodybuilders use to get more muscles. My body had a tendency to make muscles all of its own accords. It would be clear whenever I would try a new sport or work out routine. I would have muscle aches once, after that my body knew what I needed: extra muscles. This lead to me always gaining weight, even though I would eat healthily and work out.

So now that I get the medication, my natural steroids are at a lower (more normal!) level. This brings about its own set of side effects.

My muscles are melting away a bit (I haven’t been working out for about half a year). This in itself is no issue. I feel more feminine. However, it does bring some imbalance to my joints. And this gives a bit of discomfort (you know, pain and some unsteadiness). It makes me take more care with moving, doubting what I can and cannot do. Am I just as strong as before? How much should I carry? Should I wait it out? Can I go surfing?

For now, I have decided to join a gym. This week is actually my first couple of weeks back on exercise 🙂 so I hope I can balance my joints out properly. For now, it feels good, since I also get to have muscle aches again after a workout 🙂 this is something that I didn’t use to get a lot of before the treatment. I must say it feels good. Also, I hope it contributes to the downward trend of my weight. It has been on a plateau the last couple of weeks.

It is also the reduction of steroids that makes my hair fall out. I suppose compared to my sister on chemo, I can’t really complain much, but it is annoying to be having my hand full of hair when I would just run my fingers through it. So mostly I put it up in a pony tail to not shed everywhere 😉 I think I now have about half of what I had. And although it sounds like a lot, I really used to have a lot of hair, so you really won’t notice. It does mean, however, that my hair isn’t as heavy and therefore it dries way more quickly and my curls get more bouncy and light. Not too bad 😉

Side Effects: Temperature

I wanted to write a post about the side effects. But it has gotten to be a long and boring piece of text that had a bunch of lists. I would like to explain what it feels like, and what I have to deal with. But I don’t think it will come across really as I intended it would.

Nevertheless, since there are so many symptoms and side effects, I will give them to you piece by piece 😉

Firstly, as is appropriate for the current weather circumstances (it is pretty cold in The Netherlands), I am going to tell you about my sense of temperature.

With full-blown acromegaly, I was never cold. I was always feeling warm (not feverish, but the sensation of being warm enough, if not hot). I broke out in sweat really easily and for no apparent good reason like standing in line at the supermarket, or walking in the city, shopping. Trying new clothes was horrible. I was always picking clothes that wouldn’t show sweat stains. And I never wore warm and cuddly pieces of clothing. Never. It was uncomfortable.

After my first injection, I was driving to and from Delft weekly, and at some point, during one of those commutes, I noticed my feet were cold. To me that was mindboggling.

Now I’m on my fifth injection and this trend has continued. It is now pretty cold outside and it makes me dig into my closet searching for my warm sweaters and long fuzzy cardigans. But I didn’t find any. Realization hit me quite late (not a compliment to my intelligence). For the past 6 or 7 years, I really didn’t need or even want warm fuzzy sweaters.

I need to go shopping. Again. But now for warmer clothes.

 

 

 

 

 

 

Within normal range!

I got the news. And the news was good.

Totally unexpected to my endocrinologist my blood values were actually showing great signs of improvement! All my values showed a change for the better. The best news was that my IGF-1 (the growth factor causing the worst things) values were now within the normal range! Hurray 🙂

So yes 🙂 I am very happy 🙂

And because of that I won’t mention the tiredness after the fourth injection, or that my hair may be getting a bit thinner (I have a lot to lose, so it won’t show), or the gastrointestinal issues 😉

No, I am in a good mood now 🙂

Bring on the future!

Happy New Year

I was very happy to say goodbye to 2017. 2018 is going to be so much better 🙂

A diagnosis is just a new starting point and I am totally optimistic looking forward. And I am right in doing so because on the second of January I got a call from my eye doctor telling me that there is absolutely nothing wrong with my sight or field of vision!

Last week I met with my endocrinologist (internist/endocrinoloog), the doctor that is an expert on hormone balances (endo for short). He is a pleasant guy, with a sense of humour and not afraid to be speculative (apparently sensing I can handle that). So he made a good impression on me and my dad.

In a couple of weeks, he will call with the results of the blood that was taken that day. Then I will know more about what the medication is really doing in my body. He did mention though that it will take 5 months, more or less, for the effect of this medication to have a stabilized in my body. So I am holding course 🙂 and curious about my blood values 🙂

The Weirdness of my Life now

If you read back in my posts, you will notice that in November I was back in The Netherlands for a year. I have done what I set out to do: earn money. However, I could never have imagined such a strange reality as the one I live in right now.

In this last month, I have had my second injection (only a day of cramps! yay!), I have had two hospital appointments (for me, mostly eye tests since this tumor is right in between my eye nerves), my sister has had her breast amputated, I have done a yoga course, I have had to study for an exam and then take that exam, driving to and from said exam in my very sturdy (or so I thought) car and to top it off, the day after I learned that my car won’t pass the yearly check, so I need to buy a new one. It is a lot all at once.   

No amount of chocolate will ever be able to fix it (although I’ve tried, and tried, and tried). Which is good, because too much sweet stuff is causing headaches (not sure if that is the tumor I feel or just something else altogether). So I make an effort to eat more healthy (less crap basically).
I am very much looking forward to christmas to catch up on sleep as my housemates are total asshats. And all this weirdness is leaving me TIRED (yes in capitals). Or it could be the medication, as it is mentioned as a side effect. But these times are not really very normal to me, so it may as well be something else (and with that I mean that it might be everything else). Did I mention I wanted to move? I was looking to buy a house but I still can’t wrap my head around everything that is happening and I really need to be able to sleep at night, so I may see about renting something (which makes me unhappy, but still, health comes first right?)

The good news is that I will be teaching a yoga lesson as of January 🙂 every Wednesday. And although for now my mind is still very much preoccupied with all the above mentioned titbits, I am sure that by January I will feel much better.