My Graves Rollercoaster

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Hi everyone,

I have been reading great posts and information on this forum for a while now and found it very helpful.The information and the knowledge of what is happening with me. I thought I would join and tell you of my experiences.

I noticed during 2012 I was really becoming tired and unable to do the most simple tasks. Im a single bloke , 46yrs old and apart from work I enjoy my bike,fishing and being with friends.

So at the end of 2012 I finally put my hands up and ventured into my doctors surgery thinking all sorts.

Was given my first ever blood test and was left a message, from my doc, when I got home on the Friday night(even though told him to ring mobile). Saying got results , contact me asap... Well after spending the weekend thinking I had everything from tennis elbow to brain disease(I had lost my mum from brain cancer the year before) He told me my thyroid levels were sky high and started me on carbimazole that morning.10mg.

End of December 2012 still worn out ,had appoint with endo and he doubled my dose to 20mg and sent me for a scan and another blood test.Confirmed it was Graves and started me on Block-Replace Feb 2013. He said to have 2weekly bloods at docs and put carbizamole up to 40mg as my levels were still very high. Stating when my levels come down to normal the doc will start me on thyroxzine. Sadly doc forgot that bit or something and in May 2013 endo visit I had gone dangerously under. Even though I had rang my doc twice in the March saying I felt great are my levels ok now for the replacement,???

So spent until July 2013 to get my levels back up to correct level and endo started me on Block+Replace had me right in no time, perfect.So a good few months of life.

Dec 2013 he stopped all treatment and by end of Jan this year levels on the rise again and was transferred to Nucleur Med dept at another hospital and told to start carbizamole again.

Had that appoint in Feb . I did say I knew my levels were still on the rise(Getting used to the signs now) so he did a blood test that day.2weeks after that was really ill with it so rang nuke med dept to ask about my blood results and was told to ring my doc, docs not interested and told me to ring nuke med dept. Well at that point I was beyond dispair and it was all too much, I had to do something so decided to self medicate or go to A+E. Opted to double Carbizamole , I had to take control as between them they were killing me.

A fortnight after deciding to take 20mg instead of 10mg I slowly started to regain my life, followed by a letter dictated 3weeks earlier to increase my dose to 20mg. So glad I took it into my own hands.

Had appoint at Nuke med today and said he would look at RAI treatment end of May, even though he promised to get me booked in 2nd/3rd week of April. My levels are perfect for the first time since my blood test in 2012. So said forget the RAI and I`ll stay on Carbimazole. This week I started feeling fine again, So I am determined to have a life this year and just control it myself, will look at RAI possibly end of the year after I have had a good few months and a good holiday.Both of which I have not had since 2012. Its been a hell of 2 years , really affecting my life.

It now seems to me that as long as Nuke Med Dept and Doc keeps out of dealings with my levels life is great.Sorry to go on but it made me feel a bit better lol.

Thanks again for the fantastic info on here, its a great resource for people in the same boat.

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6 Replies

  • Posted

    Carbimazole can mess up your immune system so be prepared for the odd cold or ten.

    I also found it easier to adjust levels myself rather than wait the 2 weeks for the surgery to get the results and forget to phone me ! Luckily I have a very clued up doc but the health centre are hopeless at times.

    I found it useful to alter the thyroxin dose to match my activity levels. I don't have a thyroid any longer and take 162.5 ug per day - sounds daft, but cutting a 25 ug pill in half made the difference between wild fluctuations of energy and fatigue and a nice steady level. If I have a busy day I go to 175 and if its an office day then I take 150 - but normally I split a pill and it seems to work out - sounds crazy but seems that critical , for me at least.

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  • Posted

    Thats horrible really. I feel for you.You are describing a true story of negligence and ignorance , but pleased that you are finally satisfied with treatment. It is quite common that doctors do have many casualties through their field ,and you seem to be one of those.
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  • Posted

    It sounds like you have antibodies to both Graves Disease and Hashimoto's Disease? I haven't heard that Graves patients need replacement unless they have antibodies to both diseases or they have RAI or thyroid surgery.

    You may benefit from adding L-Carnitine to your medications (which you can get in a health food store). I have recommended Acetyl-L-carnitine to Graves patients who have a problem getting their TSH into the normal range but I would recommend regular L-Carnitine for you as your levels seem to be extremely variable.

    Others have reported feeling much better on the Carnitine and there is a research paper from an Italian researcher, Dr. Salvatore Benvenga who says that hyperthyroid patients can benefit tremendously from adding L-carnitine to their treatment regimen.

    Someone else on the Board recommended Ashwagandha, another herb as excellent for us.

    For myself, I don't ever want to have RAI or surgery for a non-malignancy problem.

    Most people I talk to who have had this treatment never feel normal again.

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  • Posted

    Many thanks for your replies

    I do believe Iam much better controlling this myself.

    Linda , That is exactly what is going on, The endo, who was fanatstic by the way, said it was antibodies attacking my thyroid making it dump all the extra chemicals in my body. He said apart from that the thyroid is great. Will get some L-Carnitine on Monday and I have appoint with a private hostpital next week for them to do my blood tests so I can get results quicker than 3weeks after a battle with both department. I can then get them within 24hrs so I know where Iam

    Many thanks and will update

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  • Posted

    I read more about Ashwagandha, and found that it is certainly NOT recommended for patients with Graves' disease. Someone with GD died because the Ashwagandha made them even more hyperthyroid. It is sometimes used to treat hypothyroid.
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  • Posted

    Ok, just an update from original post.

    I am now seeing my Endo on a Private bases and he is going to be managing my levels from this week.

    So im getting faster bloods + results when I need them which for me at the moment is what I need to restore and claw back my quality of life.

    I did say that a lot of the problem is they treat the disease my not the symptoms and its the symptoms that have given hell the last 2years. So that is good for me.

    So moving on I will not have the RAI until a later date , and when it suits me, without the Nuke Med dept constantly changing the goal posts and not telling me when my levels have changed until 4-5weeks later, which ends up with me being knackered for 4weeks then taking another 4weeks to get back.

    At the moment , now my levels are correct, finally, I am feeling great for the first time in ages.

    I kinda forgot what feeling normal was like...... Have restarted the project to redesign my garden that I attempted to do in 2012 and its coming on a treat. Life is good so with the correct management Im looking forward to a great year or two.

    Also I started on the L-Carnitine 500mg a day for now , so not sure if this is helping with my mood or if its because my levels are under control , but will keep with it as I m feeling great.

    Thank you all for the positive replies to my first post.

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