How PCOS and Thyroid Disorder Nearly Wrecked Me and How I Regained Control

Recently I had to go without my usual medications for two months. You can see the outward signs of the disorder here in the aftermath of my hormonal acne breakout on cheeks, chin, philtrum, and neck. The acne appeared about a month after I didn’t have access to my medicine. I’ll be sharing how I care for my skin to get its tone back now that I’m back on track with my medicine in another post.

Not Like the Others

Polycystic ovarian syndrome and hypothyroidism are hormonal disorders that affect a lot of women. I found out I was one of them about five years ago. I didn’t realize the extent of what it had done to my body and my mental health until about four years ago, after I finally achieved hormonal balance after about a year and a half of trial and error with various therapies. I don’t look like the typical patient with PCOS and thyroid disease which is one of the reasons it had gone undiagnosed for as long as it had. I was dealing with hallmark symptoms of both conditions : lethargy, muscle aches, sour mood. I thought that was just part of the territory of being in law enforcement and working shift work. Symptoms I knew I had: depression, heavy periods, debilitating cramps, night sweats, acne, and shedding hair. Symptoms I do not have that make me atypical: obesity, hirsutism, insulin resistance/diabetes, high blood pressure.

 Image | Hush Naidoo Image | Hush Naidoo

The first doctor to order blood work to see exactly what my hormones were doing was my dermatologist.  I visited her originally to address a stubborn milia near my eye. I also had very stubborn acne but by then I had learned to live with it. It wasn’t cystic but it was chronic leaving my skin congested and me looking tired and worn down from the post inflammatory hyperpigmentation (PIH). When she had quickly solved the issue of the milia she asked me how I felt about my acne. I didn’t even want to deal with that. I just told her that I tried everything and nothing works. I rattled off the lists of medications (prescription and otherwise) I had tried over the years, assured her I was highly compliant, but nothing really worked. She sighed and said that she was confident she could clear my skin and bet me that she could do it as long as I followed her instructions. It was her confidence that intrigued me and I figured it wasn’t going to hurt anything to give it another try. She sent me to get my bloodwork done. Since she didn’t want me to come out of pocket for her own bet, she packed a bag of office samples of the prescription medication she wanted me to use. After three months of using topicals: Ziana and Duac gels, Aveeno Foaming Calming Cleanser, and a basic moisturizer along with an oral antibiotic for the first month, my skin was clear. No active lesions. I was impressed. Though I hated being beholden to topicals I figured that nothing had worked this well before and I could live with it. She did her job so well that I didn’t really need her anymore. However, she still suspected based on my test results I was dealing with something for which topical medications and diet changes weren’t going to do the most good and so referred me to an endocrinologist. But I delayed. I delayed for a whole year before going because I figured I would talk to my gynecologist about the situation at my next check up which would be in a few weeks. She was my doctor in charge of my reproductive health; surely she would also be interested in what my dermatologist found.

Dutifully, I brought my test results to my gynecologist appointment. She glanced at them and said there was nothing wrong with me, some of my levels were inflated but within the norm, and that dermatologists need to stick to their specialty. She turned me all the way off. I respect physicians and the ones who see the body as a whole integrated system – which it is – are the ones I respect the most. The fact that my gynecologist wouldn’t even consider the opinion of another doctor simply because she wasn’t within her discipline was more than enough for me to question her sincerity about my health. How many diseases are spotted first in the skin, nails, and hair? I fired her but I was still hesitant to make an appointment with the endocrinologist. She wasn’t covered by my insurance and I was already seeing results from my dermatologist’s routine. Why should I ask for more? I hadn’t had reliably clear skin in twelve years. Was there anything more that they could do for me? I figured this was as good as it was going to get and went about my life, not realizing at the time I was settling for mediocre results.

Later, I went for a derm appointment unrelated to my acne and met with the physician’s assistant this time. After discussing my initial reason for visiting, she went over my test results from earlier in the year. She asked if I had seen the specialist yet. I told her that I had seen my gynecologist and that she didn’t think anything of it. I mentioned that I didn’t like how she dismissed the derm’s recommendation, but that I was seeing results so I didn’t see a need to keep going down that road. She sighed and said in the most respectful way that “gynecologists don’t always consider the same parameters that an endocrinologist does” and would I please make an appointment. She asked me if I was still having the other symptoms unrelated to my acne and I had to admit that I did, but I gave her my reasoning behind those. She stopped short of rolling her eyes and said earnestly that she was just like me: “not the typical patient” but that her life changed dramatically once she sought treatment; that my shift work and profession probably was only making the symptoms worse not the sole cause of them. She said there was no need for me to suffer when there is a solution out there. She got through to me. She was right in that I hadn’t tried all my options. I was already salty about my gynecologist’s reaction but reassured in my derm’s and her staff’s unwillingness to throw her under the bus. These people were looking out for me. I decided that seeing the specialist was the right choice.


Riding the Rollercoaster of Emotions and Symptoms

 Image | Priscilla Du Preez Image | Priscilla Du Preez

Meeting with the endocrinologist had me anxious. I had to do a glucose test to test my pancreas’s ability to regulate my blood sugar. It was two hours of feeling not quite right that resulted in confirmation that I wasn’t diabetic or insulin resistant. I also had another blood test done testing for a wider variety of factors than the one initially ordered by my dermatologist. At my follow up she said just looking at me any doctor would be right to suspect something other than PCOS, but looking at my blood work she said the results were clear. She had also tested my thyroid and diagnosed me with hypothyroidism which explained the symptoms I had that PCOS did not. I had a vague understanding of what it meant but after she explained what it would and could mean for me I was so upset. The rest of my life I have to deal with this? Maybe infertility and cancer too? I cried in her office, but being the excellent physician she is she consoled me and reminded me that I was still young (26 y/o) and that we had caught things early. Other than the symptoms I was already dealing with there was absolutely nothing in any of my results that suggested that I had to be concerned with anything else at that time.

I still have fears. I’m scared that I’ll get cancer that won’t be treated easily. I’m scared of my hair falling out again. If I do ever try to have biological children I’m afraid that I’ll miscarry or have a very difficult time conceiving. Miscarriage runs in my family. Having the knowledge of my family history and my own condition is incredibly helpful as I can mentally prepare myself for the possibilities that scare me. I know that whoever I’d raise a future kid with will of course know all of this and be fine with it, whatever the outcome, so that makes it easier to contemplate. It’s a painful road to go down should either or both situations happen but one that I will eventually be ready for. Or as close to ready as a person can get. These fears aren’t going to go away but I’m handling them better and better every day because I work so diligently to take care of myself and I hold on dearly to optimism.


The Maintenance and Medicine

 Image | Simone van der Koelen Image | Simone van der Koelen

I used to have to see her every six months when we were first trying out different therapies to manage my condition. For PCOS I was placed on a birth control pill (they really need to give it another name. It does so much more than prevent pregnancy) and spironolactone and for my thyroid we went through quite a few different therapies until we landed on a porcine derived hormone replacement. After the first three months on my new therapy so much changed for me. I had energy that I didn’t even know I was missing. My skin was clear without the need for the prescription topicals. The muscle aches and night sweats lessened. The depression lifted. I felt like the person I kept searching for who was hidden under a cloud of malaise. I had no idea what I missing out on and was kicking myself for holding off a whole year before doing anything.

After about two years of therapy I started noticing my thyroid medication was making me frenetic. So I tapered off of it and at my next check up told my doctor that I didn’t think I needed it anymore. She reviewed my blood work which I had done every six months and indeed my thyroid was functioning normally. She revised my diagnosis from hypothyroidism to thyroiditis advising sometimes the conditions mimic one another, however to keep an eye on it as it could come back. Another year and a half goes by and I’m feeling good except the moodiness returned and my skin wasn’t looking as vibrant as it had. I didn’t know if it was my hormones or if I was feeling the effects of turning thirty. Was it true what they say? Everything goes downhill from here?

So at my next check up my doctor did a full work up and discovered I was deficient in vitamins D and B12. She asked me if my activities had changed and I said nothing other than my chronic American style poverty. I can’t afford meat regularly and don’t go out because inevitably it costs me money therefore I get very little exposure to the sun. She hooked me up with high potency Vitamin D and instructed me to take an over the counter B12 supplement. After two weeks that moodiness had disappeared. After six months my energy levels were back to what I had grown accustomed to. I decided on my own that if my Vitamin D and B12 levels were low and knowing what I knew about my diet it would be pretty safe to assume the rest of my nutrient levels could use a boost. I added a multivitamin to the mix and these days am feeling quite good. Consistency is absolutely key as it takes very little to ruin my progress. Just one month of hormone fluctuations from non-compliance with my medications (which can happen when my pharmacy or insurance formulary changes on me and has happened more times than I’d ever be cool with) can throw me off. When I’m off my medications I get about two months before the symptoms hit me like a freight train. As of this publishing I’m dealing with this very thing due to circumstances beyond my control, but am back on track. Getting back to square is always a trial but I usually get there fairly quickly.

I haven’t reached the end when it comes to my hormone disorder and I’m okay with that because it’s just another part of being me. I’ve learned that I don’t have to be moody all the time or have crippling menstrual cycles or crazy acne. I can feel peace within my body thanks to a hawk like attention to my diet, exercise, and symptoms; and three kick ass medical professionals in my corner who helped me get the chance to live my best life. I want you to know if something doesn’t feel right to you, if you don’t feel right to you, seek help. And keep seeking it until you find something that works for you. Don’t resign yourself to misery and frustration. And if you find you’re in a place where you can’t help yourself because you don’t have access to the resources that can make a real difference, don’t be hard on yourself. I’ve been there too and one thing I know unequivocally is that things are always changing. Stay ready for the opportunity and when it shows itself don’t hesitate, take it.


Disclaimer

Your health is important so please take care of yourself and remember that I am not a medical professional or licensed physician in any way. I cannot give medical advice outside of the scope of telling you to talk to your doctor. There are management methods available that I don’t cover here as I am speaking from my personal experience and can only tell you what worked for me. Don’t try to diagnose yourself or anyone else based on this or any other personal accounts of these disorders. If you think you may have PCOS, thyroid disease, or another type of disorder speak with your doctor.

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