Graves' Disease Support Group

CinR,

You are not alone, I haven't been myself since I have graves as well. I am sorry you are having a hard time. I only had blood tests and my hyper thyroid was so high and the TSH low and the endo said I had severe graves. I never had a scan or ultrasound. I was so sever that they wanted to get me on meds asap.

I had RAI two weeks ago wens. It was no big deal for me see my post to applebobby about it. I had to go on a low iodine diet b/c I took potassium iodide to help with how severe my graves is.

Good luck.. best wishes. I know it is not an easy decision. With radiation you only take a pill no surgery no hard recovery. HUGS!!!

Hi Alot of doctors will try & scare u into deciding Ive found out. Ive seen a cardio after being told the same thing cardio said jst keep ur levels good & ull be ok. There are also risk factors that ae the same w/ being hypo thyroid too. You need to research what u feel would be the best choice for u. Surgery isnt as bad as it sounds .Ive heard very postive things and know quite a few people who have had it done, & that also would be my choice, I dont want to wait for my thryoid to die in surg its out its dead u start repalcements ..Ive seen a surgeon he explained the process and have talked to people who have had surg recovery is less than a week. I understand ur frustration ive had graves for 5yrs and have been kept hypo and miserable by my endo i was mantally unstable had anxiety depression didnt eat also when i was hypo. Eben w/ perm treatments u still need to find good levels for u thats the whole battle. (also i responed to u in Apple's post) Try not to stress b/c it really takes a toll on us ..Be well :) If you ever need to ask anything jst do it there are some many wonderful VIPs here to help and they have helped me feel well again for the past 7-8months by keeping my levels where they are good for me (higher end of normal) Im like a differnt person back to the old me ! Jst take time to understand what levels are good for you

PS also check out Eliane-moore.com ask her questions that are concerning you about heart issues .She gives wonderful knowledgeable advice

Cin

Others "do it" by being proactive in their care, learning as much as possible about the disease and maintaining the right levels.

I firmly believe the reason you are still having problems is because you are not being medicated properly.

If you choose either permanent treatment option and stick with the same doc(s) you're using now, I am sorry to say but I doubt you will feel better.

You won't necessarily have the same symptoms you have now but you will have other symptoms that many people find worse.

Most people taking ATD's are overmedicated and therefore have symptoms.

At least with ATD's, if the doc is telling you to take too much, you can tell him/her you want to take a lower dose to be "conservative" and do it.....you would then discover how much better you feel and the doctor certainly can't deny that.

Most people after a permanent treatment are often undermedicated and therefore have symptoms.

Once you opt for a permanent treatment, you will go either hyPO immediately (after surgery) or slowly go hyPO after RAI. (remember, the permanent treatment options eliminate the thyroid so you will become hyPO and need replacement hormone)

If the doc doesn't know how to medicate you properly, he/she won't prescribe enough replacement hormone. How do you get the amount you need? Much, much harder.

Until you learn what needs to be done to feel well, you will have problems.

It is VITAL to find a doctor that will medicate you properly.

Unfortunately, if a patient doesn't learn how he/she needs to be medicated, there is little hope that the patient will feel well - no matter what their treatment choice.

Why don't you start another thread, post your labs (with ranges), meds doses you were taking at the time of each lab and the symptoms you were having?

We know how to interpret the information and can tell you if you've been medicated properly.

We can also guide you in discussions you need to have with your doctor about dosing adjustments.

Truly, if your doctor is not medicating you properly now, how can you possibly even think that the same doctor will medicate you properly after RAI or surgery?

I know I keep repeating myself to you about this but I speak from experience as do most of the others on here.

It's up to you - if you want to feel well and have Graves' disease, you really need to take heed.

I'm off my soapbox :)

Wishing you the best,

Carol

Ooops...forgot a couple of things.

Tryingtosmile is 100% correct about the cardiac issues....the only risk we face with our hearts is once again due to improper medication practices.

If the doc doesn't medicate us properly, one can be left either hyPER (thyroid hormones above range) or hyPO (thyroid hormones below range).

Being hyPER or being hyPO can definitely cause cardiac issues.

Now, since thyroid hormone levels are specific to the individual, even a level at the higher or lower end of the range can bring on symptoms.

Yet another case in point for looking at your labs to see what's going on.

And, Elaine Moore's site is
www.elaine-moore.com

I've made so many typos in the past with it that I notice when it happens for others :)

Carol ...My tho thoughts exactly how can u trust a endo to medicate u right w/out a thyroid when he barely do with one ...Its extremely frustrating & I had actually even said those exact words to my endo as he looked at me like i had 3 heads lol

Ya know, I'm past getting frustrated at this point.

Having Graves' really brought about some good changes in me....I've finally become patient (have to wait on lab results...have to wait to see what new dose will do....have to wait to find the right doc - lol)

And, having Graves' brought me to a new level of acceptance....not only with other people (like a crabby person might be having a "bad health" day like I've had) but also accepting the reality of situations vs. fighting them.

My "new place" re docs is to see one as long as he/she proves "useful". Usefulness for me is defined as a doc that doses me as I know I need to be dosed....and a doc that will order labs for me as frequently as I know I need them.

I just started with the internist - she looks promising. But, I still have my mid-December appt with endo #3 (so I can at least get labs in case the internist doesn't work out)....and I have a mid-January appt with a GP listed on the "Top Thyroid Docs" website in case both previous docs "bomb out" and I can at least get labs.

I figure I can always beg my GP (18 yr relationship) to order labs for me while I try to find the right doc......I know what I have to do re dosing so it's "just" a matter of getting labs......and, I might just try to convince him once more to treat my Graves'

I asked him a few months ago during my physical and he told me I knew more about Graves' than he did!

This is what most "properly medicated" forum peeps wound up doing - I figured I might as well try it myself and it's working so far.

O I feel ya ...for 4yrs at least 6months at a pop i followed & allowed the endo to mis medicate me ..THe last time was last year i started in Sept beggin him to reduce by Oct i was miserable but Nov horrible (again for the 4th time in 4yrs hair falling out) By Dec was in tears beggin him as he told me i had female pattern balding & that i was WITH IN RANGE shouldnt be feelin the way i do mayb i should go on anti depress's and see i phycologist ...So I go to my gp than my dermo & also get a physcologist Dermo said ur hair is over all shedding and ur labs are horrible ..Gp says labs are horrible..Physcologist think also my bad mental state was being cause by bad thyroid levels. I have had a very rough raod in my 4yrs I thought everyday that if that would be my life i wanted to die ..It was a scary & dark time ..

CinR:

I agree with cd and trying.

Please, please work with your antithyroid meds to get your thyroid levels back in ranges to where you feel your best at. Then work on researching everything when you can concentrate better and see what you want to do.

You are not feeling well because of being mismanaged with your ATD med. If you don't take the steps to learn now to be proactive, how are you going to be like if you selected the next treatment and your doctor doesn't treat you 'right' with the replacement med then?

{{{hugs}}}

Congestive heart failure is caused by being hypothyhroid. People who were and went years without treatment risk this happening to them. An irregular heart beat or one that is too fast can happen when you are hyperthyroid. Both can be treated with the proper meds.