Health Update: PCOS Flare Up & More
Hey everyone! I’ve been wanting to write this blog post for a while, but I didn’t really know where to start, plus I have been waiting on results of tests to start new medication etc., so it never really seemed like the right time to write about it.
I know some of you asked me where my regular outfit content was as I hadn’t posted an outfit in around a month and a half over the summer, but I am back on schedule now with sharing my fashion related content and hopefully (touch wood) I will be for good.
What’s Been Going On?
So where do I start? As you know, I have Hypermobile Ehlers Danlos Syndrome and I was also more recently diagnosed with Poly Cystic Ovary Syndrome. To say that I’ve been on a flare up of these conditions is an understatement – it was extremely miserable.
Before I went to the United States for the summer, I had noticed that my acne was starting to come back. I had been doing really well with my acne clearing up due to being on a different birth control pill called Clairette, however I was starting to feel unwell on this and it was making me feel nauseous (I even threw up on the plane and in the car) and I just felt generally unwell.
While I was in the USA, I was having a LOT of joint pain and exhaustion. It was meaning that I couldn’t do my regular exercises, I could barely walk distances without my hip and lower back hurting and being aggravated for days. It was really uncomfortable. Some nights I couldn’t even sleep due to hip and back pain – just trying to find a comfortable position to lay in was impossible.
When I got home to the UK a month ago, things were even worse for me. I was having hot flashes and my anxiety levels were through the roof. At any given moment I was on the verge of crying and anything was a trigger. I was in an interview with someone and I started feeling a hot flash and I had to try and stop myself from crying. I remember these feelings all too well as I used to have severe anxiety and panic attacks anytime I left the house. It felt all too familiar and I knew something was wrong.
At this point I was starting to get an extremely bad stomach, I couldn’t keep any food in. I’d have stomach cramps all day, bloating, pain… it was really bad. I was miserable. At first I thought it was something I had eaten, but it was lasting for 2 weeks and I couldn’t take any more. It was feeling exactly like when I had SIBO some years ago. I was at the point of starving myself and just eating small amounts of bland food to try and keep something in. I was absolutely exhausted and just fed up. With all this combined, I had no energy at all to work.
I decided to get my hormones checked again and sure enough, my results came back with the highest amount of testosterone I’ve ever had (it’s so high it’s at the edge of the red out of range scale) which is odd because the Clairette birth controll pill is supposed to have an anti-androgen effect and decrease testosterone. My last blood test showed my testosterone at the high end of green, so it had just tipped into the green range, about 9 months ago, which I was so happy about and that’s why my acne cleared up. My latest blood test also showed that my estrogen had increased a lot. It was always low, in the red zone of low, like pre-menopause (I’m age 35) and now it was well into the middle of the green, which I think was what was contributing to my migraines, anxiety, hot flashes and panic attacks.
I couldn’t understand why my testosterone had done this, and then I started noticing how bad my sugar cravings had got. My body seems to crave sugar really badly, usually in the form of fruit juices and chocolate. I also crave carbs. I did a lot of research on this and apparently that’s very common with Poly Cystic Ovary Syndrome and insulin resistance. I have noticed a huge increase in acne and sebum production when I eat sugary foods. I’ve tried to just stay on bland foods like protein and vegetables, to not spike my blood sugar, which does improve my acne, but then I start to feel unwell after as it’s not sustainable.
I went to a new doctor with all of this information and we discussed me starting a new pill (Gedarel) to try and help my acne and hormonal balance. This one has less estrogen in it. I’ve been on it for about 3 weeks and I have to say that my anxiety and hot flashes have really calmed down (thank goodness, especially with that heatwave we had!) and my migraines have lessened. So I know that all of this was related to a disruption of my hormonal balance, however…
The testosterone remains extremely high and my sugar cravings are out of control. I’m always open and honest here so I have no shame in saying it is out of control to the point where I am consuming around 80g-120g of chocolate a day, plus fruit juice or fruit and this is awful for the sugar amount, and the calories. The odd thing is that I haven’t actually gained any weight, but I am miserable.
My doctor and I discussed with an endocrinologist about taking Metformin. This medication is widely used for diabetes, but it has a good impact in patients with Poly Cystic Ovary Syndrome because of the insulin resistance. Since I am of a healthy weight, losing weight to help my symptoms isn’t an option, and Metformin does have less of an impact in those who aren’t overweight, but we will see. All we can do is try and see what does or doesn’t work at this point.
I’m pretty certain I have insulin resistance because it’s all pointing that way, especially the sugar cravings and that disrupting my hormonal balance and creating way too much testosterone. So I had to take a kidney test to check they’re ok, but one of my levels (eGFR) came back slightly lower than normal. It’s supposed to be above 90, with an average of 100, however mine is 85.
I did do a lot of research and found out this can be because of the insulin resistance effecting my kidneys, and it also could be because of my lack of sleep lately and my stomach issues where I wasn’t keeping anything in. My doctor assured me it’s normal though and it’s fine.
New Treatment Plan
I started Metformin on the 14th of this month, so a few days ago, and I’m starting at a super low dose of 250mg once a day for a week, then 250mg twice a day for a week, then three times a day etc. until I reach the dosage of around 2000mg a day. I’m starting slow and low like this to minimise side effects because I am very sensitive with my digestive system and this medication can upset that a lot. So far, everything has been fine.
Another good thing is that my Prolactin levels are coming down. This has always been super high, almost off the scale, but I had a brain MRI some years ago to make sure it wasn’t a tumour, and I’m all clear. It seems to be extremely high because of the Poly Cystic Ovary Syndrome. My TSH (Thyroid) was high too before I started birth control, and that’s remained in a good range since. This can also increase with Poly Cystic Ovary Syndrome too – so we do have some improvements in some areas, just not the main ones.
I am really hoping that Metformin works for me, and given how extreme my sugar cravings are and how much it disrupts my hormone balance and production, I think it will. If it doesn’t, the only other option to try is an androgen blocker like Spironolactone, however, I always have a blood pressure that’s around 107/69 and I don’t want that to lower anymore as sometimes I do get low blood pressure symptoms and I can pass out. I know Spironolactone lowers blood pressure and my endocrinologist said it may do that in me, so to be honest, I don’t think that’s an option I want to take.
I will continue to see how it goes on the Metformin and I will update you in some months to tell you how everything is going. In terms of my other symptoms though, the joint pain and the stomach issues…
I started seeing Ed Marshall, a chiropractor here in Bath, last year and he’s been absolutely amazing for my joints! With my hypermobile joints, I regularly end up in a position where I need regular adjustments and to lessen the tight muscles. My main issues are my neck and shoulders, my lower back and hips. He’s been treating me for a while now and I’ve had a lot of improvement regarding my pain. Especially where my neck is concerned. Getting an adjustment there helps so much. He’s been really kind and gentle with me, and we’re creating plans to help me going forward, especially with supplements and things too. I never knew how much I needed adjustments until I started getting them. If any of you are looking for a chiropractor in Bath, I recommend him! He helps with lifestyle as well, he’s not just a chiropractor.
Another thing that has helped my joints is my diet. When I was in the USA, I noticed I was eating gluten here and there and not really worrying about the consequences. I found out I was intolerant to gluten some years ago and I live a gluten free lifestyle, which has been amazing at limiting my inflammation and stomach issues, but when I started eating it again, it took a little while to build up inflammation and pain and all sorts of problems, so combining a strict gluten free diet with visits to Ed Marshall, my joints are in much better shape. I am hoping that I can start doing light exercises again and walking a bit further distances as I’m barely doing anything at the moment.
As my stomach has been really bad, my doctor discussed it with a gastroenterologist to see if I could have the same antibiotics that I had before when I treated this. They have agreed, and I spoke to my doctor today to discuss my treatment plan with that. I have had a few good days lately, in terms of my stomach upset since I was strict about cutting out gluten, but I am still swollen and uncomfortable, with a lot of gas, so I think it’s important to eliminate the problem and start fresh. I will take a higher dose of probiotics during my antibiotic course, and I will make sure I am only eating healthy foods (the rainbow diet worked well last time) to build the good bacteria back up.
Where I’m At Now
So, that’s everything. I’m so sorry that this turned out to almost be an autobiography with the length, but that’s why it’s taken me a while to put this together and update you on the situation. So with the plan of action being a new birth control pill (so far, so good) and taking Metformin (again, so far, so good) and starting antibiotics to clear up my stomach issues, I’m hoping things will improve drastically.
I’ve already got way less anxiety and panic attacks from the new pill, and my joints and inflammation is better after going strict gluten free and seeing Ed, we just need to get the sugar cravings and testosterone down, so that my acne and other Poly Cystic Ovary Syndrome symptoms can get better.
It’s all a process, but I feel like I’m somewhat on the right track at the moment. We will see. If any of you have any experience with anything I have written here in this blog post, please do get in touch if you feel like it could be helpful. In the meantime, I’m just going to try to enjoy the autumn and try to keep doing things that lessen my anxiety. Lorna.
P.S. – This isn’t a paid ad, but for those interested in the birth date candle above, I do have 10% off for you if you want your own birthday version, it’s LORNA10 and you can buy it here. I’ve been relaxing a lot in my room lately with candles and I find it really helpful.