[beauty2010]

in reply to: Third relapse #1183510

Hi yet again
Well I have just had my fifth relapse so the writing is on the wall
Don’t feel too bad but got it early
TSH almost zero but t4 just at top of normal range
This time I was complying well with carbimazole and my life was less stressful so seems like the Graves has got a life of its own
I am 53 now and this can’t go on happening into old age as I suppose it will affect my heart
Anyhow I’m back asking all you lovely people for some advice
RAI or thyroidectomy
Would plump for RAI but the risk of eye disease scares me. I have never had it and don’t want it

[beauty2010]

in reply to: Third relapse #1183508

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
B

[beauty2010]

in reply to: Third relapse #1183503

Hello 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
Xx

[beauty2010]

in reply to: Is your endo supposed to address symptoms? #1183336

My endocrinologist is always more equable when my symptoms fit in with the blood tests and seems to take it as a personal affront when they don’t
Bless

[beauty2010]

in reply to: Third relapse #1183502

A funny thing happened
At my next appointment my white blood cells had gone up again
So I can stay on carbimazole for now

[beauty2010]

in reply to: Third relapse #1183500

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
Sarah

[beauty2010]

in reply to: Third relapse #1183495

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
Xx

[beauty2010]

in reply to: sleepy sleepy #1178405

Hi
Well my levels were completely normal, and I feel fine now. Might just have been recovery sleep!
best wishes to everyone

B

[beauty2010]

in reply to: symptoms with normal bloods – maybe this will be useful for anyone else in the same situation #1178543

Hi
Thanks for all your responses
amosmcd – yes, it is irritating when you feel dismissed and they say it is all in your mind. I have also had the experience of symptoms in spite of ‘perfect’ lab results. I think that there are different reasons for getting symptoms in spite of normal labs, one may be as Harpy said that our bodies get ‘used’ to the anxiety response which has been reinforced during an episode of Graves and the other is that there is actually something physical going on, for example, perhaps as my endocrinologist admitted the autoimmune process itself has some effect on the brain. In any case symptoms outside blood changes seem to be very common indeed and endocrinologists should admit this, rather than ‘pathologising’ everyone with a mental health diagnosis. In some cases mental health support can be very useful, but it should not be imposed on the patient, and there should be less black and white thinking, i.e. either its your thyroid or its mental health – the situation is far more complex than that. Good luck and I hope you TT goes well
Bxx

Hi Harpy
Yes, I think that patterns of behaviour during Graves episode (especially the first episode which is often longer and initially misdiagnosed) can stay with us, but I do wonder if there is also another factor other than hyperthyroidism itself which causes symptoms outside of episodes of hyperthyroidism. I don’t think that there is any definitive answer on this, but there are suggestions in the literature about whether the autoimmune process itself can cause symptoms in predisposed people, as the autoimmune process is not confined to the thyroid but also effects the brain.
Thanks for your reply and I hope your partner continues to do well. I don’t do yoga but I do go to a meditation class which is fun!
Bxx

Hi Vanillasky
Thanks for your reply. It made me laugh and cheered me up.
Bxxxx

[beauty2010]

in reply to: sleepy sleepy #1178403

Hi
Actually feeling a bit better now. I am seeing endocrinologist tomorrow and will let you know what he says. Thanks for all the replies and support!
B

[beauty2010]

in reply to: For those living with extreme fatigue and cognitive impairment despite bloods being ‘within range’ #1177527

Hi Mslux
thanks for your reply.
Do pm me if you would like to. I feel very strongly about this and would love to try to make a difference to how people like us are treated.
Bxx

[beauty2010]

in reply to: For those living with extreme fatigue and cognitive impairment despite bloods being ‘within range’ #1177525

Hi
Thanks so much for starting this thread.
In my experience, Graves disease symptoms take ages to go away. I was diagnosed late 2008 with TSH of 0 and T4 of 60 and treated with carbimazole. I was off work for nearly a year, and continued to have symptoms of fatigue, anxiety and decreased productivity for the next three years. I used to go to work for three days and then sleep on my day off – for the whole day. It was not until the summer of 2011 that I began to feel like my old self, but symptoms recurred around beginning of 2012. My GP treated symptoms with carbimazole even though my blood levels were normal, and they abated.
I was concerned that if I did not take action, my illness would return as the symptoms I was having were similar to the symptoms I had before my first attack of Graves.
I went to see my endocrinologist, who was adamant that these symptoms were nothing to do with the thyroid and strongly recommended a referral to a psychiatrist which I refused, and strongly discouraged me from continuing to take carbimazole. I therefore came off the carbimazole and some months later was diagnosed with hyperthyroidism, TSH 0, T4 32. I was gobsmacked when I went again to see my endocrinologist, that he still did not give any credence to my earlier symptoms, which I felt were a prodrome. I could understand him not wanting to treat with carbimazole with normal bloods, but I did feel that some credence should be given to the opinion of a patient who had been through it all before and felt that their disease was returning. He again said I should go and see a psychiatrist, because my symptoms were ‘too bad’ for my levels.
I did go and see the psychiatrist, who did not find any mental ill health and discharged me.
I agree that endocrinologists are often dismissive of symptoms that do not fit into their disease model, especially as there is literature describing long term disability from Graves. I also think that it is arrogant of professionals not to admit that their knowlege of an illness is incomplete (as it must be for all illnesses) and I was disconcerted at not being listened to and respected for my opinion.
I don’t have any magic answers about how to cope, but I feel that my body and brain have been damaged by the illness. I guess all I can do is listen to my body, rest when I need to rest, eat well, and excercise in moderation (severe excercise seems to make me worse when I am vulnerable to relapse). I have also tried acupuncture and meditation which are calming. When our financial situation allows, I may reduce my work hours. I try to find ways of addressing anxiety. I work in health services, so I hope to be able to use my experience to understand the illness experience of other people. The most important thing I have learnt is how important it is to feel listened to and validated, because the relationship a patient has with her medical care provider can be therapeutic in itself.
Thanks again
B

[beauty2010]

in reply to: symptoms all over the place #1173945

Hi
Just updating re the previous post.
After I last posted in August, my symptoms gradually reduced and my labs were OK.
However, for the past four weeks or so again I have had rapid pulse (over 100), lost half a stone, anxiety (I feel as if all my family are going to die, etc) and reluctantly got my bloods done again, because I was convinced they were going to be OK. My TSH was undetectable and T4 was 32. I still feel dreadful.
GP put me back on Carbimazole and propranolol.
It is really funny because I have had these symptoms in Dec 2011, March 2012 and August 2012, and the symptoms have been self limiting and the bloods have been OK
Then I have had exactly the same symptoms this time (which have not gone away) and the bloods are off.
I am sure that it the previous episodes were related to this one, but I guess my endocrinologist will say that the previous episodes were mental health (anxiety) and this one Graves
I am convinced that they are all related to each other.
Really wierd. Does anyone have any advice?
Also, does anyone know what the recommended treatment is after a relapse.
Many thanks for all your help. PS – it is the end of the world today anyhow
Bxx

[beauty2010]

in reply to: symptoms all over the place #1173943

Hi
Thank you for your support.
I had bloods done 5 days ago but have not heard anything back. I presume they are OK
I am still feeling very ‘warm’ with intermittent palpitations (pulse rate 90 whilst resting in bed). I have started to have a burning feeling in muscles of upper thighs and am weak.
I can’t concentrate very well and am p’d off with it all.
I am going to keep going until either the bloods change or they do not – in which case there must be something else wrong with me!
B

[beauty2010]

in reply to: Possible relapse but bloods only just off #1170938

Hi everyone
Thank you for all your support. I am in the UK so things are a bit more limited here.
My endocrinologist actually referred me to psychiatry, but I have declined the appointment as I am sure that this was a physical thing, not psychiatric (although my mood was certainly affected) and also because I am not suffering any mood symptoms at all at the moment. The reason I think it was physical was that I looked so dreadful and the fact that the symptoms responded to carbimazole – funny thing, but there it is.
Anyhow I am feeling loads better and am coming off the carbimazole. I am coming to the conclusion that stress has a big part to play in the disease and I am really trying to manage stress in my life. I am making sure that I sleep when I need to, eat more healthily and have taken up meditation and am attending classes for it.
I look loads better and my work colleages have noticed.
Anyway, I really have appreciated your support and I wonder if anyone else has had episodes like this.
B

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