My Story with Graves Disease Part 1


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Please note I don’t have any medical training and you should not use the information provided here as a substitute for medical care.  I want to share my personal story because I feel it may help others that have been diagnosed.  I’ve decided to share it as my first post because it’s been a big part of my life and I think it might help me to get it off my chest.

My story with Graves’ disease starts about three and half years ago when my second child was nearly a year old.  I had a strange collection of symptoms that Google couldn’t place and I also had this strange vibe that I “just didn’t feel right.”  After several months of this strange feeling, I took my sack of symptoms along to a local GP and she asked me all kinds of questions and eventually said to me that I was likely to have an overactive thyroid. I really don’t remember what I said to the doctor, but I do remember feeling very relieved that it wasn’t all just in my head.

I had several blood tests and a scan of my thyroid and was prescribed the anti-thyroid drug Neomercazole.  After discussing it with the doctor I decided to wean my second child before starting the medication.  I don’t think this is necessary, but I would discuss it with your doctor.  Weaning my child was something I was considering doing around that time, regardless, so I just thought I would prefer not to be passing the medication through my breastmilk.  I began taking the medication and felt better within weeks.

The anxiety I had been experiencing became noticeably decreased and also my total obsession with chocolate biscuits began to wane.  I had noticed that my obsession with chocolate biscuits was becoming close to an addiction, but I hadn’t really noticed how affected I was emotionally.  It was a stressful time in our lives and I had just put it down to that and all kinds of demons that I thought I had.  I probably still have those demons, but as it turns out, they are not what made me behave so strangely.  I had become a very emotional person, when previously I was emotionally very strong.  General life became difficult to cope with.  I did experience weight loss, but I thought that was related to breastfeeding and all the business that comes with caring for two very young children.

Life went on and I was grateful that I could now enjoy my children more and not be a crying mess at the end of the day. Eventually I came to the decision that I was ready to come off the anti-thyroid medication.  I think I just wanted to be done with it.  I discussed this with my GP and after testing my thyroid hormone levels, I slowly reduced the dose to nothing.  I was very happy.  I thought I was one of the lucky ones that went into remission and need never worry about it again.

Sadly I was wrong about Graves’ disease staying out of my life. About eighteen months later the symptoms returned.  I felt the change immediately.  That strange vibe returned.  I went to a new GP, as the one who first diagnosed me had left town, and had my thyroid hormones tested.  Sure enough, they were elevated, though only slightly.  The GP prescribed the anti-thyroid drugs again, and even so, my thyroid hormone levels still increased.  Thankfully over time the thyroid hormone levels did come into the normal range.  This new GP also referred me to an endocrinologist.

After discussing my condition with the endocrinologist he recommended staying on the anti-thyroid medication until I felt ‘normal’ again.  He suggested it was better to discuss further, more permanent, treatment like radioactive iodine or surgery when I felt I had my head straight.  I felt happy with this decision, because I truly didn’t feel like I was in the right headspace to make that type of decision.

We did discuss the options for the longer term.  Namely, radioactive iodine treatment, surgery and staying on the anti-thyroid drugs long term.  Different risks are attached to all these options and I urge you to discuss them with your doctor to make sure you understand what would suit you best.  Some of the issues they consider are your sex, whether you smoke, what access you have to a major hospital for emergency treatment if required, if you plan on being pregnant soon.

After several consultations, my own research and discussing it with my family, I decided to have the radioactive iodine treatment.  I’ll probably discuss my reasons and experience of that treatment in another post.  At the moment I’m only a couple of months post-treatment and I’m feeling OK.  I’m still worried about what the future will hold, but I’m looking forward to having this thing sorted.  I’ll keep you posted.

The most difficult part of this whole process has been the pain of regret I feel when thinking about the effect it has had on my children and husband. The thought of my children experiencing a mad mother when they were so young and had no way of understanding is extremely upsetting. The lost time has also meant other lost opportunities.  Several life decisions have been put on hold while we wait for ‘things to get back to normal,’ even though it may still be a few months or even a year yet.  And all the while the children grow and we all get older.  I try to focus on the positive and think of the good things to come, but am often overcome with an angry sadness about having Graves disease.  I will be forever grateful for the patience and love of my husband and children.  That is one of the best things to come out of this experience, I appreciate them and feel more deeply in love with them than ever before.

Another positive change in my attitudes, has been my understanding and compassion for other people. Losing your mind, so to speak, has been a big eye opener.  It is an awful feeling knowing that your behaviour and your thoughts are out of your control and that there is little you can do about it.  Dealing with the fatigue has also been very difficult while caring for two young kids.  Yet, people I have met suffer much worse.  In fact, since I have been diagnosed with Graves Disease I have known several people my age or younger that have passed away from cancer.  Other people I have met suffer with mental illness every day of their lives with no prospect of ever living without it.  Strangely, this type of understanding has made me happier, because I feel like I’m a better human being with deeper wisdom and tenderness that I otherwise would not have.  And this certainly makes me a better parent and partner.

So that’s most of my Graves Disease Story thus far.  I hope that someone finds comfort reading my story as I did reading other’s stories.  I found comfort from just writing it.

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4 Comments Add yours

  1. globalmouse says:

    Wow, I’ve never heard of Graves disease before (such a scary name!). Poor you that must have been awful to not know what was wrong. Thank you so much for sharing your story, I’m sure you will help people and I think it’s so brave to put your story out there to help others. Really looking forward to following your blog.

    1. mumsumsum says:

      It does sound scary, but it’s just someone’s name. Lucky for me I was able to easily get the care I needed. Thanks for you support. 🙂

  2. freebutfun says:

    Thank you for sharing. I think your children may want to read this when they are older!

    1. mumsumsum says:

      Thanks for your comment, it’s very kind. I think it may explain a lot for my kids too when they are older and look back on things.

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