I was going to write about something else today, but it requires me putting on my new yoga dvd and actually doing it. I’m a bit too comfy on the sofa to have gotten around to that so far! I was looking through images for my page to make it a bit more attractive (expect to see many theme changes over the coming weeks as I have a playaround), and I saw so many pictures of bumps and pills it really got me thinking about medication and bipolar. It also is helping me build up to a big post around the psychology of trying to conceive which I hope to write about soon.
But in the meantime, here’s the question of the day – how much harm do bipolar medications do to the conception process and the unborn baby? As ever, links to relevant articles will be at the bottom of this blog.
For many, many years, women with bipolar disorder were told not to have children. It was too dangerous, the risks were through the roof, we would pass this onto our kids, they would be blighted forever with cardiac issues, psychological issues, we wouldn’t be able to look after them…..the list goes on.
Fortunately, we live in more enlightened times where a woman has more control over her decisions and her own body. We aren’t treated like idiots because we have a mental illness. Ergo, we can choose whether we feel able to manage the rigours of family and child rearing and, in that process, whether we decide to stay on medication or not. I can only share things from my own personal experience (and please note that I’m not a doctor so it’s all what I have been advised/experienced/read up about), but thought I would tackle this in a two-phase article; before pregnancy and during pregnancy.
Before I begin, just to put my medication into perspective. I live in a country which gives out paracetamol as a cure all for every illness and to get any extra medication is a big, big deal. The Dutch are big on self-help, medical intervention only where absolutely necessary, and not medicating unless it’s super serious, much to the horror of us expats who move here. I used to long for Boots and Superdrug where I could get something to fix any ailment I had over the counter, My poor DH, for example, had bad tonsillitis for two weeks and was told to go home and it wasn’t until he went spotty with a rash all over his body that they finally gave out antibiotics. It took me a LONG time to get medication for my thyroid as well which was more frustrating as that I found more debilitating than the bipolar in some regards.
On the flip side, however, I am glad I am not on a huge drug regime. I was very reluctant to take anything and am glad I finally gave in and tried the lithium out. I have responded very well to it and, fortunately, have only had one psychotic episode which we were able to control without drugs since. I will talk about that another time though!
I could look at this in two ways but actually they all end up as a positive. At the time, I was on 600mg of Camcolit (lithium) a day. I’m definitely a ‘low dose’ kind of girl. When they increased me to 800mg I was sick as a dog and it made all my bipolar symptoms worse. I spent a week shivering at my desk convinced the whole office was out to get me!
I am pretty sure this accelerated my thyroid collapse. Now, all my research and speaking to my doctors told me that lithium wouldn’t cause miscarriages or make me infertile. On the contrary, as my moods were more stable so were my hormones, freeing up my body to focus on producing the right hormones at the right time and bringing me more into balance.
As for my thyroid, I really really need to do a long old post on this. But I firmly believe this is the reason that my miscarriage happened and why I struggled to conceive for so long. How else can I explain when, being put onto 125mg of levothyroxine, I was then testing positive six weeks later? I had made life changes as well, such as going gluten-free (again I will explore this later), and being generally more positive and happier. I had also done a lot of positive thinking exercises which again I will write about later. Given that I live with something that affects my mind, I am a strong believer in what the brain can do!
I should also comment that I didn’t discuss really with my doctors that I wanted to get pregnant. The scant advice I have read for women wanting to start a family with bipolar is to talk to your psychiatrist or GP. My care team certainly knew I was ttc, but I didn’t get any extra advice apart from that they would need to do more blood tests and I would be referred to the perinatal psychiatric services at the main hospital here. I suppose I should have taken their lack of concerned-ness as a positive sign that they weren’t phased at my wishes to have a family and if they thought there would have been any issues then it would have arisen.
What they did say after my miscarriage was that my thyroid would have played a part. So again, there you go. I can’t emphasise enough how important it is to keep an eye on those TSH and T4 levels if you want a successful pregnancy.
So, did taking lithium affect my conception chances? It’s a resounding NO.
Now, this is where there is a ton of advice. And a lot of it I think VERY scary and intimidating and unnecessarily so. I feel so fortunate to be in such a no-nonsense country. I have stayed on my lithium and confess to gibbering with fear at every scan, terrified that I’m going to see a problem with my baby’s heart. That is the largest risk factor with taking lithium and one that was, until very recently, considered very high risk.
But why continue with medication? Well, mainly to stop another episode. We have to have ourselves in balance to deliver a healthy baby to the world. There’s also a 1:4 risk of postpartum psychosis immediately after the birth. There’s also a 1:4 chance of postnatal depression. So yep, that works out that, of all the ladies with bipolar having babies and giving birth, there’s a whopping 50% chance of a serious episode right after the birth.
Recent research that came out (I think) of the Netherlands (yay) showed that the chances of the baby being affected by lithium were much lower than originally thought. They are, I have been told, 1:2,000 which is less than 1%. My consultant also said he’d never seen a baby with the heart defect in all his years of practice and he must be in his sixties. So I felt pretty secure in taking it. I was actually more worried about my thyroid not working properly so I was very careful about taking that little pill every morning and following the instructions to the letter.
What I found funny was that the NHS do not recommend taking lithium in pregnancy which really surprised me. How can drug regulation and guidance be so completely different from country to country in the EU? But that’s a blog article for another day….
My medication got spread out so I had to take 200mg 3 times a day at regular intervals. It helped as the lithium dosage needed to be spread evenly so as not to cause a spike, which would have more impact on the growing foetus. I had blood tests every four weeks to monitor both thyroid and lithium and regular checks for liver, glucose, antibodies, and I have no idea what! For my first two rounds of blood tests they took 8 vials. For someone who hates needles this was really quite a trauma, particularly when you have a noob nurse digging around in your arm saying there’s no vein when you know that’s your ‘good’ arm!
Basically, what happens in pregnancy is that as your volume of liquid goes up (so far I have gained 14 kilo, sadface), so the effectiveness of your lithium goes down as it decreases in strength in your bloodstream. We have to maintain a steady supply of lithium above 0.4 for it to be within the clinical treatment range. I’m going to talk about depression and pregnancy and hyperemesis in another post, but suffice to say it is horrible. I couldn’t do anything but focus on keeping a bit of water down. Around Christmas much to my relief my work contract finished and I was able to rest and recover from the hyperemesis. Except I was still very down. I was very frantic, I was very anxious. I was filled with nervous energy and no outlet for it. I hated EVERYTHING. Nothing was good enough. I wasn’t good enough. I had doom scenarios in my head, and would go from A-Z in less than a second, convinced everything was going wrong. I started behaving erratically again. I was convinced every man and his dog were out to get me. DH was beside himself with worry. And I was suicidal. These were such unwelcome emotions that I hadn’t experienced for over a year, I was devastated. And I was powerless to stop them.
Some part of my brain acknowledged that possibly maybe my lithium might be a bit low. It wasn’t until my later round of blood tests showed that it was at a paltry 0.2 in my bloodstream that I realised where it was all coming from. Reluctantly I agreed to an increase of lithium to 800mg a day, taken 4 times a day in 200mg doses. After all, I had read about the devastating effect of lithium on babies, right? Awful stuff. Why would I pollute myself with that?
I saw the head psychiatric honcho at the hospital who made me cry he was so nice. He said that the hormones in my body, namely the stress hormone cortisol, would have such a negative impact on my foetus, far more damaging than taking lithium, He said it was important to keep me in balance so the baby would be able to grow and thrive. They couldn’t do that unless I took my medication.
That was three weeks ago. Lithium count is now 0.35 and I am a different person. DH said it was like night and day again and was so glad to have me back. My liver is doing strange things but apparently that’s just because it is working harder to process the extra lithium.
So, is it worth it, this drug taking whilst pregnant?
Yes, 100%. I wish I could advise on other types of drugs as I know there are many that aren’t safe. Particularly some of the anti-psychotics. But what I can say is that lithium is working well for me and I’m so glad because to be back in my black space was beyond awful.
This is already a bit long, but I am going to do a separate piece on the risks of lithium compared to other things during pregnancy. You have to do what feels right for you. Be guided by your doctors but also by your own instincts. Do you want to go to those crazy highs and crushing lows during pregnancy? We are at such risk and, if like me, you are already super protective of the growing life inside you, you’ll do anything to make sure your baby is ok.
So go with it. Don’t google stuff. Don’t feel pressured by idiots who get all sniffy at you taking medicine. Or your family. Or anyone who is basically uneducated about bipolar which would be (sadly) the vast majority of the world’s population. Do what is right for you. If you think you can manage without medicine then great, go for it. But don’t feel bad if you keep taking your pills.
OTIS – Lithium and pregnancy
National Alliance on Mental Illness – Managing pregnancy and bipolar disorder
National Center for Biotechnology Information – Fetal, neonatal and developmental outcomes of lithium-exposed pregnancies.