Been diagnosed with Graves Disease, having a hard time with it at the moment and can’t seem to get answers anywhere else. Sorry if I’ve posted in the wrong place or anything, I’ve only just discovered this site.
I should say that I have had really really bad experiences with doctors in the past and I don’t trust them, I’m scared of them and I thoroughly research anything they tell me to do. Until recently, I hadn’t been to a doctor in c.12 years. I’d been suffering with what I now know are hyperthyroid symptoms throughout that time, but I just put it down to being stressed/tired/getting older.
Specifically, I’d always been underweight, despite having a huge appetite, and I mean huge. I’m a size 6, ate 5-6 huge meals a day, loads of chocolate every day and never put on a pound, I was always hungry, this stems back to my teenage years. In the year or so prior to diagnosis I had put on weight and couldn’t seem to shift it. I’ve had diarrhoea for about 6-7 years, insomnia for about 10 years, muscles have been getting gradually weaker over past 10 years, unexplained muscle aches, joint pain, all of which I ignored. I’ve always been cold, colder than anyone else, that hasn’t changed in all this time. In the 2-3 months prior to my ‘breakdown’, my hair started falling out, my skin became so disgustingly dry that it was peeling, flakes of skin falling off everywhere, my eyes hurt, my head hurt constantly, I felt sick and anxious all the time, palpitations etc, but I did have a lot to worry about and I put it down to stress. I had noticed a lump in my neck getting bigger, but it seemed to come and go depending on how stressed I was, so I thought it was a gland fighting infection (I had no idea what or where my thyroid was until 2 months ago!).
Mid-September 2012 – had what I thought was a breakdown over excessive stress levels, I was dealing with too much and one day I just couldn’t cope anymore, couldn’t get out of bed, couldn’t stop crying, I seriously thought my head was going to explode. I couldn’t follow a conversation properly anymore, couldn’t learn or retain new information, couldn’t think of even simple words. Went to GP as I was incapable of working, signed off with stress.
End-September 2012 – returned to GP, signed off with stress for further 2 weeks.
Mid-October 2012 – returned to GP, all symptoms had gotten a lot worse, I was shaking uncontrollably, (to her great credit) she noticed my neck was swollen, checked my blood pressure and pulse, which were wayyyy too high and advised me that she suspected hyperthyroid and referred me for blood test.
This came back a few days later and confirmed hyperthyroid. Treated with Carbimazole (5mg, 3 times a day) and Propranolol (40mg, 3 times a day).
Referred for ultrasound which showed severely enlarged thyroid, but smooth. I was told it was Graves Disease. Referred to endo, who didn’t listen to me, he kept asking me the same questions over and over, clearly not listening to my responses. I wasn’t sure if this was some type of test for Graves Rage, but I was on the verge of shouting at him and walking out during the appointment. He didn’t tell me anything, I had to ask questions and got brief answers, if that, but he did confirm Graves Disease. He recommended I reduce Carbimazole to 5mg, twice a day. He asked why I hadn’t seen a doctor about my symptoms earlier, I explained fear of doctors, he just laughed! He recommended surgery, I rejected this.
Mid October – mid November 2012 - I began feeling a lot worse, I’d always had mild palpitations, but these became almost constant, resting pulse rate even with the Propranolol was 122bpm, muscle aches, hardcore insomnia (sleeping maybe 1-2 hours a night). My TSH level remained the same, but my Free T3 was dropping rapidly. I believed the Carbimazole was giving me unwanted side effects, GP disputed that, eventually she looked it up and agreed they are rare side effects of the Carbimazole.
Mid November – early December 2012 - I started feeling better, so started reducing my Propranolol, which started helping me sleep a bit better. Heart rate had also reduced back down to normal.
Beginning December 2012 – I started getting muscle cramps, pain in my neck, extreme tiredness, sleeping all the time. From not sleeping at all at night, to sleeping 10-12 hours a night and needing a 2-3 hour nap during the day. I got a cold/sore throat, but due to my fear of doctors/hospitals, I didn’t report it, I stopped taking the Carbimazole. I then resumed on a reduced dose of 5mg, once a day, as I suspected I was going hypo.
Mid-December – GP telephoned me to advise my latest blood test had come back ‘bad’. I asked how bad, she just repeated ‘bad’ and to reduce my Carbimazole immediately (which I’d already done). This is why I’m getting so frustrated, no one is telling me anything, I have to keep asking questions and I don’t get any answers. I had to ask for a copy of my lab results to compare levels, I got my TSH and Free T3 sent to me, but nothing about T4. I went to see GP re these ‘bad’ results and she said I’d gone underactive and Free T4 had changed, but according to my previous lab results these hadn’t been tested!?? It doesn’t make sense to me. I asked how underactive I’d gone and she just said underactive, I asked whether it was borderline or bad, and she just repeated bad. Getting so frustrated it’s unreal!! Told me to come off the Carbimazole completely and they did more regular blood tests to check levels. Currently exhibiting symptoms of being both under and over active! The palpitations are back also.
End-December – Thyroid continuing to go more underactive, she wouldn’t tell me my TSH result, only that if it reaches 10 they will need to put me on thyroxine.
4/1/12 – GP called and said TSH has reduced to 4.6 which is good, but the Free T4 is a bit up at 5. I don’t know what the lab range is for any of these tests.
Seeing endo again in 2 weeks, seeing GP again in a week, but I’ve lost faith in them now. I know my GP is the best in the area, and there’s only one endo in the area, but I have totally lost trust in them. They said it’s rare for my levels to have dropped (risen?) so much in that time and they weren’t really sure what to do. I’m sick of this now, I’ve been off work for 4 months, I feel worse than when this started, they are pushing me to have my thyroid removed which I really don’t want to do. On top of this, I am vegan, I was told Levothyroxin contains animal derivatives, something I don’t want to take, GP said there are no alternatives in the UK and wasn’t interested in my beliefs about this. Can anyone confirm if this is true? If I really do have to have my thyroid removed eventually, I can’t bear the thought of having to take pills containing bits of dead animal for the rest of my life!!
I’ve also since found things on internet sites that suggest soya products could contribute to hypothyroidism, as I’m vegan and eat a lot of soya, I’m concerned about this. Can I insist on a referral to a dietician, would they be able to help me work out what to eat?
Has anyone got any experience with natural alternatives to all these drugs and treatments?
I am sick of the doctors not answering/not being able to answer my questions, my levels are now going up and down on their own without any medication at the moment and I have no idea how to fix it! All the information I get on this has come from the internet, no doctor has explained any of this to me! This frustration coupled with my fear/distrust of doctors is making this really hard for me to deal with. I just want to feel better!!!
Currently, main concerns are – can’t think properly still, can’t make decisions, can’t think of the right words or follow conversations properly. Immense mood swings, flying off the handle at minor things, I’ve dumped most of my friends, others have dumped me, so I’m alone now and no one to help me. I am SO tired, all the time, some nights I sleep, some I don’t, I’m still just as tired either way. I had started walking 30 minutes a day once thyroid level dropped towards normal, almost overnight I found I couldn’t even walk 5 minutes anymore, that remains the case. Minimal appetite, hair has started falling out again, my skin has started flaking off again. I’m trying my best to learn about thyroid disease and work out how to treat myself, but it’s such a struggle reading and remembering things! I’m only 30 but I can’t walk very far, do normal social things and can barely even look after myself/keep the house running most days. I really feel like I’m right back where I started from 4 months ago!!
10/10/12 – Free T3 – 14.80 pmol/L
-TSH - 0.03 mu/L
19/10/12 – Free T3 – 8 pmol/L
-TSH - 0.03 mu/L
1/11/12 – Free T3 – 5.8 pmol/L
-TSH – 0.03 mu/L
15/11/12 – Free T3 – 4.10 pmol/L
-TSH – 0.03 mu/L
19/12/12 – Results not given to me – just told I was underactive and TSH has increased.
28/12/12 – Results not given to me, but told it is worsening and if TSH reaches 10 they will put me on thyroxine.
31/12/12 – Free T4 – 5 (don’t know previous result so can’t compare)
- TSH 4.6 (told this has reduced, but I don’t know previous result)
Free T3 result no longer being given to me.
Free T4 is new, they haven’t been giving me this in lab results.
My next blood test is in a week’s time, seeing GP in 10 days time and next appointment with endo is in 2 week’s time. I’d really like to know more about what my options are and what I should be saying to them at these appointments if anyone can help me at all please I would be so so grateful. I’m totally lost and all of this is way over my head now and no one is explaining it to me and I can’t find anyone else who has been through it! I’m really sorry if any of this doesn’t make sense, I used to be such a beautiful writer, now all my thoughts are all over the place and I can’t say what I mean to say anymore!!