[Anonymous]

#1098143

First off, but I will be abrupt: RAI does NOT cause cancer. Put that out of your mind. There have been many long-term studies following RAI recipients, and there is NO evidence, none, of increased cancers. So the source of that information was wrong. I loathe it when people try to scare us away from one of the viable treatment alternatives by using falsehoods. Someone has messed with your mind on that score.

Beta blockers: these drugs help to protect our hearts from the problems that too much thyroid hormone can cause: 1) too rapid a beating of the pulse, AND (more dangerously) 2) the potential to interfere with the RHYTHM of the pulse which can lead to arhythmias which can be life threatening. You do not have to have symptoms of the latter to be at risk if your blood tests show you to be hyperthyroid. So it is not about high blood pressure in our case.

You are exhibiting signs that you are allergic to the antithyroid drugs. That is your reality. Therefore, your other choices for treatment are theoretically surgery and RAI. Please, do yourself a favor and get a book like THE THYROID SOURCEBOOK which has a chapter debunking the online myths about RAI, and read up on the reality of these two treatment options. Make a list of the real pros and cons. Discuss them with your doctor. There can be distinct medical reasons why we should do (or not do) one or another of the treatment options. For example, since you have already demonstrated problems tolerating the antithyroid drugs, you should NOT stay on them if there is another, better choice. Make sure that there are no medical reasons to preclude another of the treatment options, and then work with your doctor to figure out which would be better for you to do.

What you should not do is con yourself into thinking that because you do not recognize problems with being hyperthyroid that the excess thyroid hormone is not hurting your body. Trust me, you do NOT want the damage to accumulate to the point where you notice it. It can be horridly debilitating. We are saved from the ravages of hyperthyroidism that used to plague Graves’ patients, due to the three, potential treatment alternatives. We are lucky to have a choice, and to have a choice of three options that are so safe, relatively speaking.

Bobbi — NGDF Online FAcilitator

[Anonymous]

#1098144

Hi Nightbird,

You do have a problem don’t you. There are a few things going on. I will try to answer them one at a time. If you are allergic to the antithyroid drugs then you probably need to consider one of the other two treatment options. Those being RAI or thyroidectomy. ATDs can affect your white cell count and or affect your liver. This is usually associated with long-term use. Since you had a reaction it may make you more susceptible. You need to ask your doctor or pharmacist about that.

Bata blockers do more then just regulate the heart. So even if your BP is fine and the heart rate normal he may have seen something else to indicate a Bata blocker. You really need ask this doc what is going on with your situation. Demand some answers. That is what you pay him for.

You have said you read that RAI causes cancer. Not true at the small dose of RAI we take. The RAI we take is about the same as three chest x-rays or a full day in the sun. Large doses of radiation or exposure to radiation over a period of time may cause some cancer but for the dose we take there is no known link. We know that there are sites on the Internet that will say we are full of it on this topic. But one of the sites even “quotes” one of our medical board of advisors to prove their point. They did not include the very next sentence in his report that said “We expected to see that RAI caused cancer over and above that in the general population. However, extensive research has not borne that out.” Another site will tell you that post mortem inspection of the thyroids of people with Graves’ disease who had RAI will show encapsulated thyroid cancer in a small percent of patients. What they will not tell you is the percent of people with encapsulated thyroid cancer is identical to people who had long term ATD use or the general population who did not even have Graves’ disease. It is a scare tactic pure and simple

So if you take RAI you have the same chance of cancer as anyone else in the world. As a matter of fact you run even less of a chance of thyroid cancer because your thyroid was destroyed.

Weight gain? It can happen. It is usually muscle mass that will not change you clothing sizes but will increase your weight. A sensible diet is needed.

Hope this has helped. We are only a click away.

Jake
On-line Facilitator
Co-Author “Graves’ Disease In Our Own Words”

[Anonymous]

#1098145

Hi Jake and thanks for answering.

One thing first – why would I have an allergic reaction NOW and didn’t have any last year when i was on the meds? Could it be cause I was on and off them so much, the change in mg and I guess also how do I even know it’s the meds that caused this – although it probably is as I had same reaction last time I took penycyllin.

Right, my doctor said he doesnt’ want me on any of the ATDs after what happened cause something worse could happen. However if it was methimozole wouldn’t I be able to try PTU or no?

Also thanks for clarifying about the radiactive iodine. I guess am nervous and I did read bad things about it and also not too pleased to have to take a pill rest of life if I get hyper. What frustrateds me is being on and off the meds when my thyroid was never once normal – had I stayed on for a long period I believe I could have had remission and since I didn’t have any rash/hives then I may have been fine.

Should I get another opinion or do you think my thyroid doctor is on the right track? Seems like you agree with him so thinking he may be. Also is the Beta Blocker bad if I have LOW BP – cause I am always low.

What’s odd is I never really had any Graves symtoms. I’ve had an eye problem for years but told it was dry eye and besides having no energy to work out – my muscles hurt, etc. but I still do it (and can’t go as long as I used to) I don’t feel bad and have no other symptoms which is odd to me.

noe more thing – is there any trouble with RAI and pregnancy? I plan on becoming pregnant by end of year and it will be my first time.

Thanks again Jake – I appreciate your help!
Lauren

[Anonymous]

#1098146

thanks for all the info Bobbi – I will pick up that book. I am glad you and Jake both told me no cancer for RAI. I just am so nervous – to get all this info in one day – that and the hives/rash and the Beta Blocker. I have clue why I was not allergic to meds last year and wonder if I would have stayed on them what would have occured? Anyway, I will get that book and read it. I wanted to deal with all this after my wedding but guess I can’t as I do’nt want any of this to worsen.

So the Beta Blocker is ok even if your BP is low? Mine is always very low is why I ask.

Thanks again Bobbi!
lauren

[Anonymous]

#1098147

I am not a doctor, so I cannot answer your question about taking beta blockers with low blood pressure. All I was responding to before was the rationale that is used to put most of us on beta blockers in the first place — so it was a general statement. When it comes to specific questions like this you have two good sources of information. The first is your own doctor. The second is your pharmacist.

As for future pregnancies: studies have also been done on that, too, looking for increased incidence of birth defects. Again, there was no statistical difference between women who have had RAI and women who have not had it, provided that you wait the recommended amount of time (6 mos to a year) after the RAI to get pregnant.

And I think if you compare the safety of BEING pregnant while on thyroid replacement hormone with being pregnant on the antithyroid drugs, you will find that it is actually safer for your baby for you to be on replacement hormone. Ask your doctors about that. You would be likely to need replacement hormone if you choose either the RAI or surgical alternative.

I still recommend getting that book — it can be a huge resource for you as you go through the decision-making process.

Wishing you good luck,
Bobbi — NgDF Online FAcilitator

[Anonymous]

#1027839

HI guys!
I posted here last year after being diagnosed with Graves and then I was told my Graves was fine so felt I didn’t need to post and I felt fine. Anyway, here’s my situation: I was on PTU and then taken off (by my endorcrinologist) last year when I was diagnosed first with the Graves and then put on Methimozole a few months later after my blood results were hyper again. (although they were never NORMAL so why I was off anything I will never know). He put me on 5mg of the Methimozole last Oct – then took me off in Oct. Well I went back on it again last week – only 10 mg and now I got a horrible rash/hives – like when I took penicyllin last. I went to see him this morning and he gave me some allergy stuff to go fill HOWEVER here is where am very upset.

He said I can’t be on any meds- no PTU no Methimizole as I can get bone marrow trouble, liver trouble etc. Is that true? Then he wants to do RAI and I am not wanting that. I hear it causes cancer. Then to top all this off he wants me to take a Beta Blocker for my thyroid symptoms (of which I have none that are apparent to me, only him I guess as I feel fine and did before I was diagnosted). So my question is – what is all this? Beta Blockers are for people with high BP and heart problems – I have LOW BP and no heart trouble. He didn’t tell me a thing about my heart or BP when I was there.

I have a call into my regular doctor today. I have another appt with a diff. endo but not until April 17 and I can’t wait that long as my endo wants to do RAI now and wants me to take this beta blocker and I don’t want to. He said if I don’t I could have serious damage?

Very upset and need some guidance!
Thanks!
Lauren

[Anonymous]

#1098148

I am always eager to help anyone suffering from the untoward and devastating emotional effects that Graves’ can have on individuals, families and relationships. I am recovering from Graves’ myself, and director of the Maine chapter of the NGDF. I also happen to be a professional counselor for 31 years. My email address is listed in my previous post, but here it is again: kwazydude@hotmail.com Regards to all!
Charlie

[Author]

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