[MichelleLorna]

#1019308

Hi..
I was told by my gp in April that i had a raised thyroid level show up in my blood test results. As i had already lost almost 4 stone in two months she put me forward for an urgent Hospital appointment to get things sorted.
My appointment date for the hospital was for 9th June 2009.
However last week i had to see my gp agian due to having sudden weakness (i was unable to stand up unaided) and couldn’t catch my breath at all. my gp sent me straight to the hospital saying i was in thyroid crisis and needed to be seen asap. At the hospital i had bloods taken & was put onto an ecg my heart rate resting was 142 and my resps were 7. when my results came back i was told that i had started to go into thyroid storm and that i had graves disease. that was the full extent of my information. i had to ask 5 times for the medication to be explained to me before i got answers. I have had an exray and us scan and am now waiting for june 9th to be told what is going to happen next. Is this lack of information normal?? all i was told was that once treatment commenced my weight would go straight back on.

[Ski]

#1070749

Oh my! Yes, sadly, this lack of information is very common ~ especially under emergency circumstances. I’m so sorry you went through this! We call it Thyroid Storm (same as thyroid crisis, actually I like crisis better, personally), and it is a result of unmanaged hyperthyroidism. Some people go into crisis earlier than others, which is probably why the doctor thought you would be okay until June 9th.

Let me just cover some VERY simple ground for you.

Graves’ Disease is an autoimmune disease (well, to be fair, we’re starting to understand it’s more of a syndrome than one disease, but I’ll get to that later), in which antibodies are formed in the body against the thyroid. These antibodies attack the thyroid, "pretending" to be thyroid stimulating hormone, which is usually released by the pituitary gland as a "modulator" of the thyroid. The thyroid, under the impression it’s being told to produce and release massive amounts of thyroid hormone, does just that, and we end up hyperthyroid. Hyperthyroidism comes with all kinds of trouble ~ heat intolerance, tremors, weakness in the large muscle groups, forgetfulness, anxiety and wild emotional swings, just as an example. While we are hyperthyroid, we lose muscle mass, bone mass, and any weak areas of the body are at extra risk. Thyroid hormone is kind of like the gasoline our body uses within each cell, and having too much is a little bit like leaving your car in park with a brick on the gas pedal. You feel anxious and revved up, and exhausted, all at the same time.

Typically the first line of defense is what we call ATDs (anti-thyroid drugs). The U.S. brands are Tapazole and PTU (long long name I will not reproduce here, shortened to PTU), which operate a little differently chemically, but result in the same thing ~ the keep the antibodies from forcing the thyroid to overproduce. I believe the UK version of Tapazole is Carbimazole (the generic here is methimazole). Not sure I’ve heard of a comparable PTU drug in the UK. These drugs work for most people to lower their thyroid hormone. The goal is usually to attempt a period of remission, in which the patient can return to normal, stable thyroid hormone levels without meds. Typically you must remain on the medication for up to 2 years before you can stop taking it and see if you’ve attained remission. In the beginning, the dose is usually very high, and it is dropped as your levels drop and stabilize. Remission numbers are around 40% for the first try, but success with the med bringing your levels down has a much higher success rate.

The meds can bring with them some serious side effects, but the effects can usually be reversed by discontinuing the med. There is a chance of liver damage, but it usually shows up rather quickly if you are susceptible, so usually the first few blood draws you have will include tests for liver function. In addition, there is a possibility of lowering your white blood cell count to dangerous levels. For that reason, the doctor should tell you to call immediately if you experience a sore throat and high fever. They test white blood cell count, and take you off the med if those levels are low enough. Not a lot of patients experience these side effects, but it’s best that you know about them.

Since you’ve gone through a thyroid storm, you are DEFINITELY not a person who will be feeling "all better" very quickly. It’s not a hopeful thing to say, but it’s a fact that you should be aware of as you go through this. It’s important that you realize your body has been through a terrible assault, and you will need much tender loving care to come out the other side of all of this. When your levels get into the normal range, and have remained there a while, THAT is when your body can safely begin to heal from the onslaught. Usually, that’s when we’re looking around and saying what, I’m normal, been that way for weeks, still feeling rotten. It’ll be that way for some time. Look for SMALL improvements, and rejoice in them. For now, keep your activities to a level you can manage. It is important that, no matter what, you keep things within limits.

I must dash now, but please stick around, and let us know how you’re doing!!

[MichelleLorna]

#1070750

Hi Ski,
Thank you so much for the information you gave me.. it has helped me to understand more of what my body is going through.
I was told about side affects to look out for but not why to look out for them so Thank you for that information.. I have to say i have been quite cross with not being able to understand what is happening to me.
I saw the hospital consultant this morning and was told my thyroid is smooth, and that my thyroid level of 70 is extemly high (is it?) and that i was to carry on with the high dosage of meds for a while longer. he asked if i was having an problems with my eyesight and not to worry as i didn’t smoke so there wouldn’t be a problem. I have to say i felt like i was one of those fakers who waste time..
I know this is vain but i also asked if my weight could be maintained, but was told no it would go back up to where is was. Is there any kind of diet i can follow to maintain my weight.. i keep thinking of not taking the meds so i don’t put weight on,( i know this is silly and i should be more concerned with my health).

This site has been a blessing to me, i know i’m not alone with this..

[Ski]

#1070751

The weight you’ve lost has not been good weight to lose, and skipping your meds would only make the situation worse, so please don’t take that step.

We lose muscle mass when we are hyper, and that’s terrible. Our body needs strong muscle mass because that burns calories, even at rest. When we lose muscle mass, we can gain fat, even eating the way we always have, because our body doesn’t have the ability to metabolize all those calories as it did before.

First, when the weight comes back on, do not panic. Some of those pounds consist of the muscle mass returning, but it is not strong yet, which is what you need. Just make sure that you have authorization to exercise, and start strengthening the new muscle mass. You’ll see, over time, that you may have gained the pounds back, but your figure can remain much the same.

If you need one more reason not to panic over the weight gain, remember that your heart is a muscle, and while hyper, you lose mass there as well. That can result in lifelong issues.

First priority: get well. Second priority: work on your weight. It has to be that way.

[hyperm]

#1070752

Hi Michelle how are you?

What a horrible way to have your diagnosis. Please keep us updated on how you are.

Take lots of care
M xxx

[samantha]

#1070753

hi my daughter is 13yrs old and had an underactive thyroid that was diagnosed last year an she was taking thyroxine .In february this year she took very ill an ended up up in alder hey hospital we were then told she had an overactive thyroid an her meds where stopped . her thyroid level kept goin up even though she was of all meds it went up to 60 an then they said they would treat her so she was given carbimazole propranolol and antiesickness it had been two months by the time she started 2 feel well in herself an was able to come home but why she was home she would complain about not feeling well all day every day and her feet ankles shins had swollen she had a large red patch on her leg that was lumped her eyes where very swollen almost like they were coming out of her head she had a reveiw at the hospital and was kept in they then told us this week that she has graves desease since we have found out about this we dont feel like we have been given alot of information as to what are the long term affects as they also say she has graves desease of the eyes aswell and has very high levels of inflamation in her body not sure what that means my daughter is still in hospital now and is having a byopsey on her legs on tuesday i would appreciate it if anyone can give as much infomation on graves in a child so young and if anyone has had the same experince also what are the long term effects thankyou so much for taking the time to read.

[Author]

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