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Hello and merry Christmas
I am posting for any advice, opinions.
I had a first episode of graves in 2008 initially misdignosed as anxiety and depression
Second episode 2012 preceded by intermittent symptoms over the previous year but no biochemical abnormalities until the end of that year
In carbimazole 5mg as a preventative since then but bad compliance (my fault) as I felt really well
Routine check up last week showed hyperthyroidism but low white blood cells and granulocytes (1.2)
Told to stop meds as contraindicated with low WBC and see doctor on monday
Very surprised as felt well apart from very slight tachy and weight loss but notably no anxiety which has always been very strongly associated with graves for me
After the last episode I had started it do mindfulness meditation and I wonder if that has helped me be more resistant to the anxiety effects
I am concerned that docs will recommend radioactive iodine as I have heard that there is an increased risk of eye disease
Best wishes and many thanks
SarahHi. It is so nice to hear from you!
My first thought about your last thought, is to take it one thing at a time. Unless I missed in an earlier post, it sounds that eyes are not an issue for you.
If the are an issue now, do write about that, and we can take it from there. No need at all for you to worry or think about radioactive iodine treatment. Just because a doctor recommends something, that does not mean that is the only option. Your other option, in your case, is a thyroidectomy. Yes, there are some evidence based studies that show a slight increased incidence of TED after RAI. There is also a slight incidence of TED with or after Graves. It comes in many different kinds, mild, moderate and severe. If you read the posts on this site, you will find that many of us chose the surgical option. For all kinds of different reasons. But people have also chosen RAI.You have had an typical, and all too frequent, misdiagnosis of Graves’ in 2008. I am so sorry about that!
I presume you are in UK, cause you were on carbimazole. Ok, so you weren’t compliant, now you know. Good idea now for the docs to have told you to stop it because of those labs. do write again after your appointment tomorrow.
You probably did feel well, because you WERE on carbimazole, so not that surprising. But you did have hype signs, which you know, of tacky and weight loss.
It certainly is a possibility that mindfulness meditation might help with anxiety, but you still have the physiological issue of Graves’. And you pretty much, I think, know treatment options. Clearly, ATD, or certainly the one you are taking, is not an option for you. I am not sure what the UK suggests in instances like this, or if they move on to the other two options of RAI or surgery.
YOU have the time it takes to make informed decisions. It will be nice to chat on the site, adding this to what your docs recommend. Docs are not very patient sometimes about discussion pros and cons, or explaining labs. But we will slug through this with you!
Shirley
Hello – We’re fellow patients here, not docs, but is your team planning to repeat the WBC test? If the low WBC count was a result of the carbimazole, this is more common within the first 90 days of starting the meds. (Although if you had not been taking the meds for quite some time, re-starting them would start the 90-day counter over again).
Sometimes there can be other reasons for a low WBC, for example, if your body has been fighting off an infection.
And in terms of the Carbimazole, it’s not all that uncommon for patients to need a dose tweak from time to time.
The concern with RAI is primarily with patients who have existing eye signs, but this is still something to be aware of.
Hopefully, the doctor will give you some additional insight today. Just make certain that he/she explains *all* of your options to you, including the risks and benefits. Keep us posted!
Hello
Thank you so much for your kind messages. They mean a lot!
Saw endocrinologist today and after a week of no carbimazole the WCC has hardly changed so he said he didn’t think that the low WCC was due to carbimazole. I have a history of unexplained low WCC anyhow
He said that he would recommend RAI or if not thyroidectomy
I suggested going back on carbimazole with regular checks on WCC
He agreed but wants to see me in a month to find out which of RAI or thyroidectomy I have chosen otherwise he said that he was worried that I would procrastinate and stay on carbimazole
I explained that I was reluctant to try either as I do not feel too unwell and I know that the carbimazole will soon see me right
We left it at that
Thinking further a large part of my reluctance to try either option is because things have often turned out different to what the doctors expect/ think should happen. For example after the first episode I was told I should be back to work in a couple of weeks when in actual fact it took me a year to get back to work and two more years to be well. Who is to say that the endocrinologist is right and the RAI will fix it
Since then each episode has been milder and with this one I hardly expect to miss any work at all which is not to bad. I have also got much better at controlling anxiety with meditation and other lifestyle changes
Bottom line for me is that the devil I know is not too bad (and might be even better if I was more compliant I with meds), whereas the devil I don’t know is scary
Thoughts and advice gratefully received
S
XxHello – The “Treatment Options” thread in the announcements section of the forum is a good place to get started reading up on the three treatment options.
I am assuming you are overseas, since you are taking carbimazole; a similar med called methimazole/Tapazole is used in the U.S.. I don’t know if this would make a difference for your doctor, but the U.S. medical guidelines do support longer-term use of anti-thyroid medications for patients who prefer this approach. (That document is in the “Treatment Options” thread mentioned above).
One concern for your doctor might be consistency in taking the carbimazole. (Even though you still have to take a pill after RAI or surgery, docs seem to be most concerned about inconsistency in taking anti-thyroid meds). If you decide you want to stay on the carbimazole, it would help if you went in to your next appointment with a plan for taking the meds regularly (setting a reminder on your phone or computer, leaving the meds out on your nightstand, using a pill container with days of the week, etc.). And if the doctor won’t support that, a second opinion might be helpful – you definitely need to be comfortable with whichever option you choose!
I was diagnosed with Graves in 1998 and the doc noticed that I was already showing signs of the eye problem. For that reason he recommended against RAI. I went on ATD for 7 years and then into remission (no drugs). Earlier this year my husband asked me to go back to the doc to see if I could get help with my heat intolerance. (It’s slightly inconvenient for him to have me so hot and uncomfortable all the time when he’s feeling normal.) The doc diagnosed me as now hypo–even with the heat intolerance–and put me on a low dose of T4 so as not to trigger the Graves back active again. I’m not sure if it has had much effect but I will continue to take it. My eyes are fine. If I were you I would see if I couldn’t find a way to adapt to the ATD and avoid the RAI if possible. However only you can know what you are able to tolerate.
Good luck
Jane
Good afternoon
Many thanks for your replies.
Sorry not to reply sooner, I have been feeling a bit yuck
I went back to see the endo a week ago, and he agreed for me to go on Carbimazole 15mg daily. My granulocytes had increased from 1.2 to 1.5 with a week on no carbimazole the previous week.
He said that he did not think that the carbimazole had been the cause of the low granulocytes, but wanted to take it slowly restarting Carbimazole 15mg and checked bloods again yesterday.
Checked WCC and TFTs yesterday and granulocytes had reduced back to 1.2 again. The T4 had not changed at all, and the T3 was a little lower but still up.
I got a message today to say that he wants to see me next week to discuss RAI and he is not willing for me to increase carbimazole but wants me to stay on 15mg
I am worried about trying RAI and want to get a second opinion.
Has anyone had a good outcome from RAI
I have been very up and down with this disease, even when my bloods have not changed, and I wonder if RAI would even this out or whether I would still get fluctuations?
Many thanks
SarahHello – Sorry to hear that the WBC issues got worse when you re-started the carbimazole.
Hopefully, others will chime in with their experiences with RAI.You can also use the “search posts” feature in the menu in the top right-hand corner of the screen to search for RAI, radioiodine, etc. and read stories from other posters. (You have to be logged in to use this feature).
You might also want to start a brand new thread – something like “Looking for experiences with RAI”. Sometimes when posters have limited time, they will only jump in on threads where they have personal expertise.
Wishing you all the best!
A funny thing happened
At my next appointment my white blood cells had gone up again
So I can stay on carbimazole for nowHello yet again
Just found I have fourth relapse
TSH 0.0
T4 30
Just felt a bit poorly for a week with some weight loss
Asked for level check
Had been on carbimazole 5mg every other day
I think it has come back because of work stress
Very annoyed
Upped carbimazole to 10mg on advice of doc and will have to look at some lifestyle changes. Will prob be fine in a week or two
Still bit scared of RAI or TT as I don’t feel that ill
Any advice welcomed
XxMy TT was very quick and easy. Not scary. My only worry is that there might be a tiny thyroid remnant left. No indication of that, but I want it all gone! I feel totally normal. No regrets about not having to worry about thyroid levels.
Liz, the Standard of Care used to be to leave a tiny piece of thyroid, to avoid having take a thyroid replacement, the theory being that a small mouth of remains thyroid would produce just the right amount of thyroid hormone. This is what I had…a sub-total thyroidectomy. As a result, I was euthyroid, in the “just right ” place for over 30 years !
ShirleyNow they are talking about radiation and steroids following TT for the best outcome of TED.
Outcome of Graves’ orbitopathy after total thyroid ablation and glucocorticoid treatment: follow-up of a randomized clinical trial.
Hello,
I have not been on antithyroid drugs so I cannot speak out from my own experience. I will say it does sound like you have a doctor that you are able to call upon when you need him—that is worth a great deal. It also appears he is taking the right measures to get your thyroid problem under control.
Four relapses are a lot to go through! Did a dosage adjustment during the other 3 lapses get you back on track? I have known individuals who have been on antithyroid drugs for a very long time without any problems. Many doctors are now in favor of allowing it so long as you are doing well when on the medication and not experiencing any side effects.
One doctor explained to me the nature of Graves’ disease. Graves’ he said has active periods—or flares. The active period is then often followed by a quieting down period. The reason individuals are on antithyroid drugs is to enable them to ride out a flare– by lowering their thyroid hormone levels. (The medication does not stop the production of antibodies.)
It may not be something you have done to cause the flare. Or if it is, the cause will pass by on its own too.
So let’s hope you are just going through a flare—which will pass and you will feel better again.Hi
Saw the endocrinologist today
He has been keen since last time for me to have TT or RAI and told me that again today. He is happy for me to carry on with carbimazole though as he knows I am undecided. Almost all my bloods were out of kilter including WCC but I have a constitutionally low WCC. I am a little bit anaemic.
Although I was very ill the first two times I had episodes I am not so ill now
Feels more like a dose of flu than anything else
The anxiety effects me less as I go on as well partly because I have got used to my new brain………
By that I mean that my brain seems to have changed since my first episode – it is more touchy. To combat this I have taken up meditation and more recently become a buddhist! This all seems to help and I have got some status quo living with my illness. However I am not sure that I have ever had the same amount of energy since I have had graves, even between relapses.
What worries me is that I don’t know what it Is like on the other side, i.e. I don’t know how I will feel without a thyroid and taking replacement. It seems to suit some people but not others. I did meet a lady in the waiting room who felt loads better even though she had been euthyroid before her TT.
Does anyone have any experience of this – would I have more energy after a TT, would I feel less anxious, or would I be exactly the same but dependant on replacement therapy
My other anxiety is how often does replacement therapy go wrong, i.e. not feeling that you are on the right dose etc
Sorry for long post and thank everyone for advice so far
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