[Bobbi]

#1062134

Hi, and welcome to the Board.

I’m truly sorry you were not warned that there would be worse symptoms for a while — that is always a horribly fearful time for people. Thyroid cells not only make thyroid hormone, but they store it for future use. When RAI starts to destroy the thyroid cells, they release all of their stored hormone into the blood all at once. So what most likely happened was that you became temporarily way more hyperthyroid than you had been before. Hopefully, you will see steady improvement from here on out.

[suzieoi]

#1062135

thankyou for your swift reply ” title=”Very Happy” />

i think im over the worst of that now but it was so scary at the time. i ended up phoning a nhs helpline , forgot to add, im in England. Dont know if that makes a difference ” title=”Confused” /> I hope not as this looks like just the place i need ” title=”Very Happy” /> . I did look at a .co.uk site but it was filled with doom and gloom , even though i know ive got a long journey ahead its nice to read the positives ” title=”Smile” />

[suzieoi]

#1018002

good morning everyone, just thought id say hello ” title=”Smile” /> my name is suzie, im 43, married with three children and was diagnosed with graves disease on feb 4th this year.

my story so far…….

i went to see my doc almost two years ago with terrible dizziness. he was more concerned with my high blood pressure and only wanted to treat that. I kept going back about the dizziness but my doc wasnt that interested ” title=”Sad” />
just after christmas i started to have tremors and palpitations, this is when i had full blood tests done and was diagnosed with graves disease.I was started on beta blockers and had RAI on march 29th, so almost three weeks ago. I have since started on carbimazole and steroids.

i will have so many questions as this is all new to me and i dont know whats happening ” title=”Confused” />

for example, i had no idea i would suffer worse symptoms after RAI as i wasnt told. I had ten days where i lost the use of my legs, couldnt stant up due to the dizziness and constant palpitations. Luckily, i seem to be over the worse.

looking forward to lots of good advice ” title=”Very Happy” />

[marza]

#1062136

Hi, Hope you are feeling much better by now?

I am just replying as a newbie here and fellow Brit ” title=”Smile” /> and would be grateful for any advice you may have. This site is great but information on treatment is generally on what is available in the US.

I am 18 months in from diagnosis with initially very few symptoms apart from right eye involvement. I was euthyroid after 6 months on Carbimazole and gradually weaned down to a minute dose twice a week but never stopped completely. Its all kicked off big time now over the last couple of months, I became very symptomatic, especially with dizzyness and insomnia and my bloods were off the wall. I am back on 5mgs Carbimazole as well as 40mgs propanolol a day for high blood pressure and anxiety. The beta blocker has helped but I am absolutely devoid of energy.

I am due to see my endocrinologist again in a couple of weeks and I will ask again about RAI, I was originally told that it is not appropriate treatment if you have eye involvement. Also sounds like it makes things a lot worse before it gets better? I would really appreciate any comments you might have.

[Kimberly]

#1062137

Hello – Sorry, I can only provide a U.S.-based perspective here. The latest guidance from the American Thyroid Association and the American Association of Clinical Endocrinologists notes that “…Methimazole or thyroidectomy are…the preferred choice of therapy in patients with active and moderate-to-severe or sight-threatening GO.” The guidance also notes that a course of steroids may be administered in conjunction with RAI to reduce the risk of eye complications.

NOT all patients who have RAI experience a worsening of eye issues. However, several studies have shown an increased risk for patients undergoing RAI vs. ATDs or thyroidectomy — so this is certainly something to take into consideration when making a final treatment decision.

[RebeccaJT]

#1062138

Hello fellow Brits!!!

I’ve been on here for a while and have found it a wonderful resource! Also whilst I love the good old NHS and I am (now) very lucky with my doctors I could write a book of grumbles about how badly thyroid and Graves disease information is presented to patients in the UK. Also doctors seem a bit trigger happy to rush along with irreversible treatments. My advice is unless you are in imminent danger, slow down, educate yourself about your illness and then take your time choosing the right path for you. It’s your body!! The GDF website (not the forum) have some great downloadable factsheets. Also a lady called Elaine Moore has an informative book and website that I’ve also found invaluable.

I also have eye involvement and my endo (and Moorfields, my eye hospital) have warned against RAI for now as they prefer it if you keep your thyroid levels steady – going too hyper and hypo can affect the eyes (Graves and TED are technically not related, but they kinda are related, don’t ask me the science, my own experience proves that eye symptoms track my thyroid, and my doctor did also tell me this). Also RAI, whilst a great solution for lots of people is in fact radiation – its the stuff that belched out of that Japenese power station!! – and I think patients should not be rushed into treatments without first being sure they know both the up sides and the down.

Ditto surgery – thyroidectomy cannot be undone once it is done. Again I’m not saying don’t do it, I’m just saying take the time if you can to weigh the options. My doctor said that GD patients, in the throws of their illness, tend to be a little anxious, intense, and prone to rashness – he said his job was to slow me down sufficiently so that it was ME and not my GD choosing my treatment. At the time, I felt so ill I could have killed him, now I could kiss that man for seeing past my symptoms to the real me that got a bit lost inside the whirlwind that is hyperthyroidism!! I just wanted it to go away and it’s taken me a long time to accept it’s not going away quickly, there are NO quick fixes and I might as well take my time.

For myself, I have chosen to stick with Carbimazole and propranolol and I was at one point on 6omg and I’m now down to 15mg after over a year. I’ve gained a lot of weight and have struggled with really horrible symptoms but for me, my choice is to try and save my thyroid.

I’ve always been a bit of a sensitive sort both physically and emotionally and I’ve been warned that not everyone suits thyroxine should I decide on thyroidectomy (and believe me I’ve been tempted, it’s been hellish at times!!!) – that I’d probably do OK but I’d never really go back to full health. Again others have no such issues but since unlike the USA, doctors won’t prescribe NDT or Armour in the UK, then there’d be no (official) alternatives if the mainstream replacement drug didn’t suit me.

I’ve decided to aim for remission on drugs (or failing that a very low dose over the long term) and I’m also trying all kinds of alternative treatments including meditation, yoga, acupuncture, alexander technique, massage, reflexology, herbs, vitamins etc etc etc to try and help my body heal. I’ve even joined a choir!! Some think that thyroid illness is about a blockage of our "voice" – speaking up and speaking out. There is a lot written about Graves Disease and stress and I know that’s true of me. It’s no wonder I’ve burned myself out!! Also, my own straw polls seem to show that we are of a ‘type’ – doing a million things at once, worriers, multi-taskers, people pleasers, people who find it hard to say no etc. Therefore I’m also changing my lifestyle.

I really hope that was of use to someone. I’d love to chat more if you’d like. YOu can always message me on here and we can chat off board about the idiosyncrasies of the British Medical System (I’m due at my hospital in London again in the morning, assuming it doesn’t get burnt to the ground by looters overnight!).

Best wishes

Rebecca

[Kimberly]

#1062139

Hi Rebecca,

Great to see you posting again – thanks so much for offering your insight! Hope that all goes well with the appointment today.

For those who are interested in the bulletins that Rebecca mentioned, here is the link on the http://www.ngdf.org web site. There are several different topics that you can choose from. (You will need to use your browser’s “back” button to return to the boards after viewing the article; or you can cut & paste the link into a new window.)

http://www.ngdf.org/pages/65

[Theresa31]

#1062140

I’m new here too, but I have been struggling with managing my Graves for a number of years. I was diagnosed 4 years ago and was terrified of RAI, so I have been on Methimazole and then PTU and back to Methimazole. I regularly experience heart palpitations, Graves Rage, lack of focus, and fatigue. I have gained 15 lbs and muscle tone which was my goal. I am terrified of gaining any more weight.
According to Dr. my "numbers" are normal. But she said I could skip one day a week of the ATD because of fatigue.

I am considering a new Dr. but cannot find one who specializes in graves who takes new patients. And I am also considering RAI. I am afraid because I have 2 children and do not want to expose them to radiation. Also, I would much rather live hyper than hypo and figure once you’ve done RAI there’s no turning back.

Can anyone relate?

[Bobbi]

#1062141

Unless someone has specific additional medical issues (damaged liver, wonky heart, etc.) it is irrational to be afraid/terrified of any of our treatment options. All of our treatment options (with the above caveat firmly in mind) are immensely safer than remaining hyperthyroid.

So, the issue has to come down to which treatment option appears to have the best chance of returning you to normal, CONTROLLED levels of thyroid hormone, without adding additional risk to your other organs. If you have compromised liver function, ATDs might be indicated as a last choice, not a first choice. If you have significant eye disease, you might be better off with ATDs or surgery. If your heart is weak….well, you probably get my point. Your DOCTOR needs to tell you about additional risks based on your overall medical condition. Just don’t eliminate any of the options in your mind because you are nervous about it.

Keep in mind, too, that autoimmune diseases are permanent — they do not go away never to return. They might go away temporarily (called "remission"), but if that happens you must stay alert to the inevitable return of the health problems.

And, comparing a small, measured dose of RAI to the uncontrolled (and complex) radiations emissions from a broken nuclear reactor is NOT HELPFUL. It’s like comparing currents with grapefruits and meatballs.

[RebeccaJT]

#1062142

Hi Therese31 and others

Yes I relate. I do understand – I was just with my endo this morning and he said most people (and indeed most doctors too!) do not understand how destabilising Graves disease can be for patients and it is important that their concerns are carefully listened to and answered. I hear your concerns re RAI and I share them although like Bobbi has said it is important to weigh up the pros and cons of your own situation, and to always bear in mind how serious GD is if left untreated.

And Bobbi, whilst I hear you and appreciate your concise commentary, I was NOT comparing RAI to a random exposure from a broken nuclear reactor, but RAI is radioactive iodine – there are implications – for the long term, for pregnancy, for exposure to pets and children etc etc. It is not without risk or consequences. I get that on balance it is often a risk worth taking.

I was recently at a (terrible) patient "support" day by a UK charity claiming to support thyroid patients where an endocrinologist from a major NHS hospital stood on the platform cracking jokes about how ‘awful’ GD patients are – how rude, tetchy and annoying his staff find us. He said his staff hate it when GD patients come in for RAI treatment, and what the heck is all the fuss about, he said, as it’s "only a little pill". At NO POINT during this comedy routine did this arrogant man explain that it was radiation really, or what it did.

Indeed, by coincidence I met a woman last week whilst out walking my dog, and she noticed my prism lenses and we got talking. Turns out she’d had an overactive thyroid (she didn’t know of what kind, as no one had told her) and she’d had RAI within weeks of being diagnosed – and to my amazement she did not even know what she’d had, had no idea what T3, T4 or TSH were, could not remember the name of the treatment she’d had (‘something to do with iodine’), did not really know what they’d put her on (‘I take some tablets now as I went too far the other way’) and she basically learned more about her own health, stood in the park with me and our dogs than she ever did at her doctor’s office!!

That is the level of treatment some British patients can get!!!!!!!! You either get lucky with an endo or you don’t, and even with the good doctors, patient communication isn’t their strong point. Which is why I see my doctor privately and I’m lucky I can afford to do so.

What I think I clearly said in my post is that unless there is an imminent health risk where urgent action is needed there is NO RUSH and patients are perfectly within their rights to put their hands on the steering wheel of their own care and figure out – with their doctor – what is best for them. Most of us get put on drugs for a time before surgery or RAI anyway, to get us ready for these more permanent options, so (major complicating factors aside) what’s the hurry?

Kind regards

Rebecca

[Halbarad]

#1062143

Hi,

My wife was diagnosed about 1 month ago. She was in
a thyroid storm… Free T4 about 6 ng/dL, free T3 about
12 pg/mL, no detectable TSH. Needless to say, she felt
truly awful, and had lost about 12 pounds in 2 days.

She had 3 days in the hospital, and has been taking methimazole,
hydrocortisone, and atenolol (beta blocker). We’ve read
like crazy, I’ve fed her lots, we do exercise (although we did
before too), and now a month later she feels
better, has gained about 1/2 the weight back… latest
tests a few days ago were Free T4 down to 1.4 ng/dL, free T4
down to 4 pg/mL, but still no detectable TSH.

We’ll see her endocrinologist on Tuesday…. she understands
the danger of another thyroid storm and the case for RAI or
a thyroid removal. But those treatments still seem so extreme!
So she is leaning toward methimazole for a while longer…

Does anyone have experience on how to successfully reduce
the methimazole dose? How frequently should we get blood tests,
and in addition to Free T3, Free T4, TSH, what measurements
are important?

We are a bit confused as to why her endocrinologist
has not asked for antibody tests… should we encourage him
to do so? There seem to be quite a thicket of thyroid related
antibodies… ones that can block/stimulate the thyroid, the
pituitary, and maybe the hypothalamus. Then there is also
thyroglobulin. We’ve gleaned from various sources (including
Elaine Moore) that antibodies are thyrogobulin are important,
but hard to influence, and mainly a crosscheck that the autoimmune
system is turning back to normal or not. But what tests should
we encourage the endocrinologist to do and how frequently?

Thanks for any advice and help.

[Kimberly]

#1062144

Hello – Lab tests are usually done every 4 weeks or so early in the treatment process with Anti-Thyroid Drugs. (However, if your wife feels a significant change in her symptoms, it’s a good idea to call the doctor and try to get an earlier appointment.) As your wife’s levels start to drop back in to the “normal” range, the doctor will reduce the dose to prevent her from becoming hypOthyroid. Every patient is different, and it can take varying amounts of time for levels to start to drop.

It’s important for your wife’s doctor to make dosing decisions based on Free T3 and Free T4 as opposed to TSH. TSH can remain suppressed for quite some time in Graves’ patients, so this is not a good benchmark dosing during the early stages of treatment.

If your wife has a definite diagnosis of Graves’, the antibody tests won’t really affect her treatment choices. Antibody tests are often used to see if patients who have been taking Anti-Thyroid Drugs are ready to discontinue taking them (which is generally about a 12-18 month period) and also in women who are pregnant, to monitor potential risk to the fetus.

This is a great place to get information and support — your wife is welcome to join us here if she has an interest!

[Halbarad]

#1062145

Thanks so much Kimberly! I’m sure my wife will post soon. I showed
her this bulletin board a week ago… she has hesitated to post so far.

Another related item… she also has very suppressed ACTH levels.

As far as I know, ACTH is to TSH as Cortisol is to FT3/FT4 and as the
Adrenal Glands are to the Thyroid.

Is the ACTH depletion common in Graves? Is there a common Cortisol
test? Anything about the adrenal loop would be great to know!

thanks again.

[Kimberly]

#1062146

Hello – Yes, the feedback loop between ACTH and Corstisol is similar to that between TSH and T3/T4. As Cortisol rises, ACTH generally falls and vice versa. As far as I know, the ACTH test isn’t commonly run in Graves’ patients, unless there is reason to suspect adrenal and/or pituitary dysfunction. Cortisol can be tested via blood, urine, or sometimes saliva.

[Author]

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