Kay’s Story – Graves’ Disease, Fibromyalgia & PCOS

With permission from Kay:

Hi. My name is Kay and this is my story. In 1999, I was a healthy 28-year-old woman, who was working, studying tourism and dancing three nights a week for hours at a time. I was a very social person and there never seemed to be enough hours in the day. I always seemed to be doing something. I was lucky to have so many good friends.

In September 1999, I went to see my local General Practitioner (GP). I had been forgetting things and I seemed to be very absent-minded, having trouble remembering even little things. I went from an A grade Student; to someone who was just passing, and even that with a lot of help from friends who studied with me. I also had a slight tremor in my hands. I knew something was wrong. I had, had Epilepsy as a child but outgrew it by 18, so I visited my GP to make sure it wasn’t the Epilepsy returning.

My GP said maybe I had been overdoing things and just needed to take things easy for a while. She said nothing jumped out at her but as a safety measure she would run some blood tests. One of these was the thyroid function test, although my GP did say she didn’t think that was the problem, since I didn’t have a lot of the other symptoms at that time.

Although the thyroid and other blood tests all came back normal I continued to get worse, encountering more difficulty in focusing my mind and battling with forgetfulness. I would even forget people’s names, and how to get home, when I was driving the car. At times I would blank out and this seemed to happen more and more regularly. I was sitting through my lectures and then could not remember half of the class after it had finished. My GP sent me off to see a Neurologist. The Neurologist was very sympathetic and ran an EEG to rule out epilepsy again. This, like the blood tests, came back normal, thank goodness.

In late October, I was still getting nowhere toward a diagnosis. I was starting to feel panicked that I wouldn’t find out what the problem was and at the same time I could see my life beginning to change dramatically.

My GP ran the thyroid blood test again and this time the test came back positive. There was a problem. I was sent down to the local hospital to have a nuclear thyroid scan done. I didn’t know the first thing about the thyroid or what it did. The nuclear scan, along with the blood tests, showed that I had Graves Disease (Hyperthyroidism).

It was explained to me that I had an overactive thyroid. I was given treatment options and commenced taking Carbimazole (neo- mercazole). My GP referred me to a specialist and started me on a high dose of the carbimazole while waiting for the appointment. I turned to the Internet to inform myself of what this condition really entailed.

By the time I saw the specialist it had been a couple of months since I started taking the medication and nothing was changing for the better. I was now having palpitations, sweating, and I had been forced to stop work. I was still studying, but it was a real battle. I had given up my dancing, something that I had loved and had been doing for 12 years. I was also experiencing sleeping problems, which I had never had before. I felt the specialist wasn’t much help to me as he said that I shouldn’t be feeling the way I did but there was no need for me to see him again, and my GP was doing a fine job monitoring things. So that was the end of that. To say that I was mad was an understatement. Little did I know, this was only the beginning of my experience with various specialists. It was also suggested to me that perhaps I was suffering depression since they couldn’t find anything specific from the test results to explain my systems.

Because my GP knew me before I got sick she felt strongly that there was something wrong and I wasn’t suffering from depression. Although I was convinced that I wasn’t suffering depression but as the specialists were so insistent I agreed to try the Anti depressants for a few months. They didn’t help one bit except make me really groggy and I experienced some side effects, which both worried me and made me feel worse. My GP stopped the antidepressants and we decided that I should keep trying to find a specialist who could help me.

It wasn’t till May 2000 that my GP suspected that I was dealing with multi-endocrine problems and she once again sent me off to another specialist. The endocrine specialist diagnosed me with Polycystic Ovarian Disease (PCO). She tested my hormone levels and did a Pelvic Ultrasound. Again, I didn’t have a clue what this disease even was until I did a lot of research on the Internet.

By the time I was diagnosed with PCO I had a lot of unexplainable symptoms ranging from sweaty hands, to hair falling out, mood swings and pains all over my body. None of the doctors could explain why or what caused the problems? I heard a lot of doctors say that I was a difficult case and I had a lot of practice at being a pincushion. I am extremely lucky to have had the support from my GP who reassured me that we just needed to find out what was wrong. She never gave up on trying to help me and spent a lot of her time researching and looking for answers for me.

In June 2001, my GP sent me off to see a Rheumatologist, Yep another specialist. I explained my situation to the doctor although I really didn’t have much hope that she could help me. She ran a battery of blood tests and sent me off for bone scans and nerve conduction tests. It really was the process of elimination. Some of the tests came back borderline but nothing conclusive. It wasn’t till September 2001, that my rheumatologist diagnosed me with having Fibromyalgia. I was told that there was no cure but it was treatable, so back to the Internet to check this one out.

I wasn’t devastated; I was just so pleased to finally have some answers. The rheumatologist put me on anti inflammatories and painkillers and told me to get in touch with the Arthritis Foundation, as they would be able to help me. A lot of the symptoms that I experience have been put down to these conditions. I am still looking for answers for some.

When I first got sick my life was changed forever. Initially I thought it was for the worse. Things progressively got worse. New symptoms and problems would occur. I lost a lot of friends because they just seemed to not be able to handle being around me with the limitations that had come into my life, or for whatever reason. I lost so much of my independence. I managed to finish my tourism studies but have not been able to use it, as I am not able to work. A lot of my social life and interests had to go out the window because of not being able to do them physically. The littlest thing would get to me. I also began to suffer panic attacks and couldn’t cope with crowds, noise or things like crowded shopping centres. I lost my confidence to drive on unfamiliar roads and had great difficulty physically coping with driving any distance. My life simply closed down around me.

It took me along time to even accept that there was a problem which may not have an answer and which wouldn’t be solved in one day. Things would not necessarily be like they had been in the past. However, now I can see that light at the end of the tunnel. I had discovered resources within myself that I didn’t know I had. I have come to terms with me, as I am. I have new hobbies that I can do. I take every day at a time instead of planning weeks ahead. Don’t get me wrong I do have my bad days but for the most part I try to look for the positives.

I have learnt not to push myself past what I can handle, because when I do go past that limit, I end up in bed for a few days. The hardest thing that I had to learn to do was learning to say no and not to feel guilty for it. I now appreciate all the little things a lot more. I am not sure what is ahead of me or what things will be like in the future but I guess none of us really know that.

I couldn’t have got through all the things I have in the last 4 years, if it had not been for my family and a few of my closest friends. Those people know who they are. They really have been there for me, when no one else has been. At the lowest parts of my journey, when at times, I have been ready to give up, they have given me the strength to keep going and keep looking for the answers.

Finally I would like to say, that if you believe in your own heart that something is wrong. Don’t give up just because someone in the medical profession says that there is nothing wrong. Only you know your own body and what you feel like. Doctors are like everyone else. They are human and they don’t have all the answers.

Sooner or later you will find someone who can help you and who you feel comfortable with. My own experience has been that research on the Internet, Support Groups and talking with other people has been a great help in enabling me come to terms with my problems and at times I gather suggestions for things to try in order to help me manage everything better. It has taken me a long time and a lot of doctors, to get to where I am now and if I had listened to that first specialist I would probably still be where I was four years ago but stuck on anti-depressants which wouldn’t be helping with the physical symptoms.

Thank you for reading my story.

My Story Update – December 2005

I wrote my story back in 2003. I am now 34 years old. I live at home with my family. Without them I don’t know where I would be. I know that I wouldn’t be able to cope with living on my own because of the combination of problems. When I’m having one of my really bad days, I have my four legged friend who follows me round and cuddles up on the bed with me. He seems to know when I’m having a bad day. I take one day at a time and don’t push myself beyond my limits. When I do push myself too hard, I usually pay for it for a few days.

I presently have my Graves Disease under control. I take a maintenance dose of Carbimazole even though my blood work is ok. I found my symptoms were there without the Carbimazole. My doctor closely monitors my thyroid. While on the Carbimazole I do not have the palpitations or sweat uncontrollably. I still have the brain fog. I take blood pressure medication to keep my blood pressure under control.

The Poly Cystic Ovarian Disease is a bit harder to get under control. I take Spirolactone to help with fluid retention and reduce the acne and unwanted hair. I found when I stopped the Spirolactone it wasn’t long before the acne was re-establishing. I went on a Glucose Intolerance Diet and I managed to lose a few dress sizes in just over 2 years. It was slow but it has remained off. I say that it was a diet, but really it’s been a change of lifestyle. I’ve learnt I don’t have to miss out on food often, it’s just has to be substituted. I still have more weight to lose but I’m well on the way to my old size.

The Fibromyalgia goes in and out of control. I am in pain most of the time but the pain levels do vary. I take Celebrex (Anti-inflammatory) and Tramadol (Slow Release Painkiller) for the Fibromyalgia. I never know how I am going to be in advance, so that is a bit of a nuisance. My circle of friends diminished when I got sick although the ones remaining understand when I have to phone and say I can’t go somewhere or do something or other. When this happens I still feel very frustrated, although I try very hard not to allow the frustration to overflow onto anyone else. My immediate and extended family have been and are wonderful. If I ever need anything, they are there.

The cooler weather plays havoc on me and my pain levels, however in warmer weather I find that I am more weary and tired. I would say on the whole my pain level variations aren’t as severe in the summer months as in the winter months. I find that stress plays a large part. I have tried to make my life as stress free as possible. I still haven’t mastered the knack of saying no as much as I would like but I have got better than I was. I still find some days the littlest things irritate me and it is very difficult to keep that irritation under control.

I have found a number of aids that help me in my day-to-day living. I use a TENS Machine (Transcutaneous Electrical Nerve Stimulation) which helps with pain relief. I use it most days and it is wonderful, if I am having to sit down for a long period of time, for example going to the Movies, because it helps ease the pain of sitting for too long. It is also great if I am travelling any distance by car. I use a heat pack/wheat pack most of the time. I use a Tap Turner to help turn taps on so I don’t have the twisting action of the taps. I also have different aids in the kitchen that I find very useful.

I have always loved shopping and going out. When I found I could no longer do those things as I had done it was very difficult to keep depression at bay. When I need a little extra help to walk around the shopping centres or if I’m flaring I will use a foldable walking stick. This was one of the things where ‘appearance’ was problematic, however I managed to overcome this when I realised it made such a huge difference in being either able to go to the shopping centre or not go.

My memory is like I am in a fog a lot of the time. It is something apparently that goes hand in hand with Fibromyalgia, mind you, it could possibly be a combination of the Fibromyalgia and the Graves Disease Brain Fog. I will go to do something then forget what I was going to do or say. This tends to happen when I am driving a car so I don’t do a lot of driving because it brings on panic attacks and results in my losing a sense of where I am and makes me very nervous of having an accident.

It has taken a long time to recognise when it is a time to either try and push through my pain, or if it is a time when it would be wiser, frustrating as it is, to treat the pain with rest, heat and increased medication.

If you are reading this thinking nothing much has changed for the better, think again. Life’s not perfect, but there again I don’t know anyone whose life is perfect. I am not able to go to work but I keep as busy as my health allows. Although my circle of friends is smaller than it would be if I was working and getting about more, I spend time with friends and family that I probably wouldn’t see as often if I was working. I spend some time pottering in my garden when I can. I am very interested in genealogy and I spend time doing that. When I need to I can lie down and rest. I have my bad times but during those I have my support network and can turn to activities that are less demanding both mentally and physically.

I suppose what I am saying is that you can look at it as if the cup is half empty but I like to look at it as half full. I’m not the sort of person to just give up although there are plenty of times I feel like I want to.

My health isn’t the best but I am the same person I have always been. I have the love of my friends and family. If you’re thinking that things will never be any good again, they can be, maybe just not the way they were! It just takes some adjustments. Life is full of adjustments. You can do it. Don’t look into next week, next month or next year—look at now. Take one day at a time. There is a light at the end of the tunnel, even the long ones.

14 Responses to Kay’s Story – Graves’ Disease, Fibromyalgia & PCOS

  1. Crystal says:

    Thank you I have known I had fibro, for 10 years and pcos.for about 4 yrs. I am just being tested for graves. I am on a strict diet. I have lost a bit of weight and down 2 clothing sizes, since April of this year. It’s been a life style change for me as well.

  2. Beth Bartlett says:

    Oh my Fibro/Graves – sister-in-uncertainty… I literally traced my life health+hurdles as I read your story.
    I very much want to share some information with you, I feel could be helpful – on several levels (I am quite familiar with the various battles /fronts all tied to the overall goal of winning the war with these unique sy!mptoms and scenarios.
    As well, though our community of similar/symptom – like/diagnosis and health care professionals I hope that we can uncover some yet unrecognized link to make way for wellness!!! Talk to you again – wishing you strength, energy and NO PAIN!!!
    😉

    hope to achieve resolution (physical, emotional and SOCIAL) frustrations, understandingthe co

  3. I had the RAI (Radioactive Iodine) ablation for Graves Disease.
    I am not taking thyroid hormone because I have no working thyroid anymore.
    Now that I take a steady dose of thyroid every day….the ‘fibromyalgia’ has vanished.

    • Cynthia Fedak says:

      I have had my thyroid surgery, which went very well, far better than I hoped. Now I am going back to the city in January for a post op. My thyroid was very big, even my trachea was pushed over…lots of nodules. The specialists just have to get my daily dose of synthroid right. I know it can take months for the meds to work 100%…I am having cold spells and very dry skin, but nothing too bad. Never knew our thryroids could cause so much damage and cause one to feel so out of sorts.

  4. Cynthia Fedak says:

    Finally I am getting my life back and I feel 20 years younger! I still have to go for surgery, but the thyroid meds have done wonders. I was diagnosed with fibromyalgia, took Cymbalta for years, and went steadily downhill. The couch became my best friend. I was told by my endocrinologist that I do not have fibromyalgia, there is no such thing, and she was 100 % right. I lost years of my life because of my health, and could not socialize because I choked severely on liquids. I used to tell my local doctors, but they never took me seriously. Oh, dry toast will make you cough. I used to think I would choke and die several times. Very stressful! I am thankful I now have an answer, Grave’s disease. But the sad part is, I lost so many years of my life. I am now 69.

  5. Shan vi says:

    I had hypothyroidism, pcos since I was 23. Then I got high blood pressure at 27. Hugh cholesterol when I was 30, they’re all linked. However, some of the hypothyroidism symptoms were always there. Now they have got so bad the doctors think it must be fibromyalgia. I’m still being checked out and the symptoms fit. Last month I was also diagnosed with mild sleep apnea which increases the pain of fibromyalgia. I also had kerataconus since I was 30. Reading your storyx has really helped to know I’m not the only one with so many illnesses. I miss my social life, being able to read and go out and do things. I hate my bad days. I’m glad I can still work but it’s part time and I still struggle. I nend to find something else, sitting or standing too long just hurts,

    • Kay Burrows says:

      you need to find a few things that give you pleasure on your bad days. Maybe a basket with a book or magazine or dvd that you can cuddle up on the couch or bed with when your having that bad day. I had to grieve my old life and bit by bit embraced by new one even though it wasnt one i had been wanting. I pick and choose what events i go to knowing that there is a consequence for going to everything. I had to learn to to listen to my body. Your not alone and you have bad days but there are good days ahead as well.

  6. Cynthia Fedak says:

    I hope that you have been diagnosed correctly, ask for lots of blood tests and do loads of research yourself. I am switching doctors after one mistake after another….don’t want to be someone’s guinea pig. Doing well except my blood pressure pills had terrible side effects and my ex doctor said I had to stay on them. I went to another doctor, am on another pill and it is working fine. Thyroid can wreck havoc with your body….it is awful I lost so much time in my life. My eye doctor said I am lucky I don’t have bulging eyes due to the Grave’s Disease. I feel like I am blessed, just don’t give up no matter what. Thyroid will affect your blood pressure, digestion, metabolism, skin, moods, etc. I was SO positive it was fibromyalgia because my doctor told me so. The endrochrinologist says no such thing as fibromyalgia.

    • Kay Burrows says:

      Thanks Cynthia i was diagnosed with multiple problems in the end but i kept searching for drs till i found one that understood my problems. Fibromyalgia does exist and thankfully its being more understood here in Perth, Western Australia. Its not a easy road but neither was Multiple scerosis 20 years ago so there is hope. Never give up hope. We cant fix the whole problems but we can choose how to live with it. What works for one person might not work for another. Keep looking till you find a solution.

  7. Rachel Kaercher says:

    I thought I was alone. I have been diagnosed with fibromyalgia by 4 doctors over the course of 9 years. In 2015 I was diagnosed with PCOS the only lab work that comes back ‘off’ is my esr and crp. My body always has a higher level of inflammation. And on top of this I have osteoarthritis all over at 33. Not one day goes by I don’t hurt. I hear my story in Kay’s and it gives me a bit of hope.

    • Kay Burrows says:

      Seems like forever since i wrote this. Thankfully things improved for me. if you don’t have any luck with one doctor, see another dr. After 7 endocrinologists i found a endocrinologist that got my thyroid under control by rai of the thyroid and ok so i take one pill daily thats not a big deal. The four forms of arthritis i was dealt with specialists working with my gp i am on medication that controls things. Yes the pains still there but im out of bed. im still not working however i have a normal life and yes there are bad days but i choose to look at the glass half full rather than empty. Never give up hope.

  8. Cynthia Fedak says:

    I am back again. I have been having problems with my arthritis now, always something, but then I am 71….an excuse or a fact. Usually it attacks one spot at a time, but yesterday and today it is all over, mostly in the shoulder blades! No fun when you have pain, and doctors do not always help or give you the right information. I am ready to climb the walls, but have been doing things. I write when I have pain or am stressed, it helps me cope. I was on water pills plus blood pressure pills for almost a year, having major issues with the water pills, would tell my doctor and he said it is due to my IC. Well, I am off of the water pills one week, here goes my blood pressure, but I was getting up at least 7 times a night to the bathroom…where is my sleep? And when I did fall asleep just no decent sleep, since going off the pills I sleep like a log. I go to pee usually two or three times a night, not as many as before. You are lucky Kay that your family supports you. I have a workaholic husband who has bad arthritis also, but will not quit working, and feels I must do the same. I have never stayed in bed with any surgery I have had. Yes, rest is important, I do know that, but when a partner says he has a sore back and has to shovel snow…well, I have housework too, but it will wait…do I need to prove to someone what I do or not do. I have lots of hobbies, sewing, quilting, writing, so that helps to keep my mind on something besides pain. Kay, you are so young, yes, it would be so much harder on you, being older you expect the health problems to invade your body. Attitude is everything! Yes, I have been there too with specialists and doctors. My Grave’s disease is gone with the thyroid removal, but I must take synthroid the rest of my life, it affects my weight, and I am not as strong as I once was. It did do away with the rapid heart beats, hand tremors, etc. I still choke if I am not careful, throat gets muscle spasms at times, but not like it was when I had the huge goiter. Take care. I could have cancer, I could have so many more things….but there are some decent days too.

    • Kay Burrows says:

      Hobbies are great at distracting our pain. Instead of one week at a time we have to do one day at a time. I think glass half full makes life so much easier to deal with all this stuff. Things can always be worse.

  9. Cynthia Fedak says:

    An update. I was feeling like someone beat me up with a baseball bat, cold, tired. No energy! I told my local doctor over and over. He said your T4s are fine. I said, “what about my T3s, but he would remain silent. Well, after several months of having problems I decided to phone the specialist in the city, well she took me seriously, I had an appointment within the month. Travelling these days is not my forte, very hard on the body, 6 hours there and 6 hours back in one day! My husband has no idea, he may have arthritis, he hits the bed and he is out cold. Not me! Try and tell someone else you are hurting! I was told when I saw the specialist and two other doctors that I need a combination pill that my thyroid pill, Synthroid is not being absorbed correctly. It has to do with my T3s, which I was telling my local doctor, but he refused to listen. Wait until I see him next! So now I am going through the “fun” of my body adjusting to a new medication, yes, ups and downs, pain and exhaustion. But when I feel fine inbetween that is great. So here is hoping all will turn out better than it was. One noticeable change, I am not cold anymore. We have been having hot summer temps and I was wearing a fleece jacket to bed and around the house, not anymore. I have to have my blood monitored every month now, my doctor had said once a year was fine, the specialist wants to see the results every month, which is a good thing. Nice to know at least one person believes me. I find high humidity hard on my body, and so is the heat….I think I can tolerate cooler temperatures better, and if I do get cold it is easier to just put a jacket on. Local doctor says no such thing as arthritis all over your body at one time, only in one spot. Boy, oh, boy, I think some of these professionals need to go back to school. I had a bad arthritis blister on my finger for a year, very sore and purple, like an infection. I told my doctor, but he looked at it and did nothing. So I read different things online, put an old fashioned poltice of milk and bread on it overnight. In the morning I touched it, the inflammation goo came out by a teaspoon at least. After that it slowly dried up and I am blister free. Wake up doctors! Listen! If anyone has swallowing problems with liquids let me know how you swallow pills with water, synthroid you can’t use food. It makes me nervous each morning.

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