# PelzerGirl Update- Supplements ect



## Pelzergirl (May 24, 2011)

What an experience!!

First off, thank you to the boards, this is truly the best place to find that relief, that feeling that you're not crazy, it's really happening and other people are going through it also!! Truly Truly thank you!!!!

That being said, I'm going to be perfectly honest, I was devastated with the responses I got and read.. I was looking for really specific info about holistic/natural approaches to treating hyper and the symptoms. I was truly stunned to see all of that type of attention focused on hypo. It really seemed like (not just the boards, but docs and other online resources) if you're hyper, tough! You're supposed to feel like crap.. when you get tired of feeling like crap, get surgery or radiation, end of story. There's no help, nothing you can do..

I do understand the difference, that hypo is a slow degradation that you can address in many different ways, and hyper is a quick killer. It's still very frustrating and scary to see no help out there for yourself..

I was diagnosed is 2004 with GD and have been fine all these years with no issue on a tiny bit of Tapazole.. Don't know what happened, but within 3 weeks I was ready to run my car off a bridge, it took 4 more weeks to even get back to a place I felt I could function, like stand in line at a store, finish a sentence.. drive!!

I say that because I was so frustrated, so angry that no one seemed to get that I was fine, and then bam! I'm sick&#8230;

I felt there HAD to be some underlying issue, that would have caused this, that I could address. I also could not even sorta understand that there was NOTHING I could do to speed up the "flushing" (I know ya'll don't like that word, but it is what it is) out of the excess thyroid hormone in my system. It just didn't make any sense that there was nothing I could do but suffer along until it resolved with the massive amount of Tapazole..

My experience is unique, I'll admit that.. I just think there's got to be some others out there that have had this experience, or will&#8230; Of course this my story and wouldn't even come close to being applicable to someone newly diagnosed or with cancer.. maybe there is no one like me&#8230;I don't know, remember, I was fine for 8 years.. then something happened.. So here's what I did..

Lots of research.. Lots and Lots.. Got ****y with my endo and went back to the MD and demanded full blood tests.. I suspected cooper and some potassium issues from my research..

Continued with Tapazole and betablocker (still on max dose, will likely taper off in next month).

Tried to stop eating the Gluten&#8230; that's a hard one, I'm down to about half of what I was eating and still pressing forward with that.

Started doing lots of raw veg and fruit.. Husband is horrified but maybe he'll get on board, he'll eat the broccoli with A1 sauce ; ) Got the juicer thing.. tastes terrible.. still working on that..

Supplementing all that healthy food with Ben and Jerry's&#8230; lots of calories, I've at least stopped loosing weight, I'm up about 1.5 pounds, so that's great after a 30 pound crash.. I look terrible : ((

Started taking L-Carnitine.. Checked with the MD first, he shrugged "won't hurt".. That's my doc, check with yours of course.. I truly believe this is what helped the symptom relief within a few days I noticed a difference. Not only did I fell like I was actually doing something that helped, I felt empowered that there was something that could be done.

Saw a nutritionist.. ~gulp~ That was like the worst trip to the principals office.. wow I had no idea really, course fast food every day is bad.. but that bad ~shaking head~ Don't know if I'll ever be truly reformed.. but at least I mix it up, instead of every day, it's twice a week, and still working on that.. Suspecting this was involved with my trigger, I had gotten so bad (busy busy work project) with the diet I went days at a time with no fruit or veg ~shaking head~

Copper was low.. I'm pretty sure this was involved with the trigger.. started supplementing that slowly.

Getting into the potassium ect, course I was off.. Doc explained it like this: I'm a car that has had a total electrical burn out (storm) and as a result nothing is working right, windows, seats ect.. Fussing at him about the potassium level, while being so toxic is like fussing that the seat doesn't move.. course not, the wiring is burned out, once that's fixed then everything else will come into line.. ~huff~.. Still don't like that answer, not sure that it's completely correct.. at the very least treat those symptoms (hook a battery to the seat) and let me have a little relief while the rewire is happening!!

Still working up the nerve to try the acupuncture ~shudder~.. Course what I'm hearing from them is that it's great for hypo (~sigh~) but will still help with hyper.. I'm extremely doubtful.. Any one out there try that??

So that's my story.. your mileage may vary! If you're long time controlled Graves, and all of a sudden you storm.. after the doc rules out cancer ect and just dumps it back on you to suffer or have it nuked/removed.. Consider diet, supplements, get comprehensive labs.. Don't give up and don't stop learning..

: )


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## Andros (Aug 26, 2009)

Pelzergirl said:


> What an experience!!
> 
> First off, thank you to the boards, this is truly the best place to find that relief, that feeling that you're not crazy, it's really happening and other people are going through it also!! Truly Truly thank you!!!!
> 
> ...


Thank you for sharing your story. I am sure that many will benefit from your experiences.

Personally, I find it fascinating that you would choose this difficult and challenging route over having your thyroid out.

Also, I was wondering; "Have you had RAIU (radioactive uptake scan?)


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## Pelzergirl (May 24, 2011)

I did have the uptake scan in 2004 with my original diagnosis.

To be honest I didn't choose.. Back in the beginning it was so easily controlled that there was no option to remove it. Now, since the flare up, I was told to hot for radiation, and was inline for the surgery when the labs started coming down, surgeon dropped me like a hot potato and back to the endo..

So at this time I had no options... sure I could have hunted up a dr somewhere that would have taken it out.. I would think.. but really is that what's needed here ~shrug~

I've read all these horror stories about the recovery, the difficultly in balancing the synthroid, getting the natural hormone, being just as miserable as before the removal..months and months of labs with no relief.. sure there's lots of people that have no problem after removal or radiation.. but there are lots that do it seems.. worth the risk??

Honestly, when I was in the middle of this storm, I was ready to get it out, I knew I would die, I could feel it killing me.. I was crushed when the Dr said #'s had finally responded and dropped to the level that I didn't need it taken out. What felt like an eternity, was in fact about a 8 week process.. Felt like it would never end, but in hindsight I'm glad to not roll that into months of balancing out hypo issues.. My symptoms hadn't really resolved.. went from gonna die any second feeling to might make it to the next day.. maybe. That's why I was so desperate to get some help..

For people with cancer, or that the medication won't suppress it.. or with other issues that can't be addressed by the meds, sure, they have to have it taken out..

What fascinates me is people that can be controlled on meds having it out anyway.. Seems like a radical, non reversible choice to me..

I'm certainly not trying to advance an agenda against the established school of thought, just putting out there my experience and that I had 8 fine years controlled with Tapazole, which likely could have been even better with a healthier lifestyle (really applies to everything I guess) and that I was able to recover from a major storm, when denied the surgery.. and even now I think I'm better controlling what I have than trying to replace a critical thing like the thyroid.. not to mention the para's that likely would have been damaged..

Thank you for the comments and the acceptance.. The broader the experiences, the more people can be helped.. right?? : ))


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## Andros (Aug 26, 2009)

Pelzergirl said:


> I did have the uptake scan in 2004 with my original diagnosis.
> 
> To be honest I didn't choose.. Back in the beginning it was so easily controlled that there was no option to remove it. Now, since the flare up, I was told to hot for radiation, and was inline for the surgery when the labs started coming down, surgeon dropped me like a hot potato and back to the endo..
> 
> ...


Oh, rest assured that I for one am reading every single word that you are writing. I think this is all quite interesting and certainly goes to show you what a person can do when they make up their mind to do it. Attitude is our strongest tool.

Have you had sonogram of your heart to make sure there was no damage due to the Thyroid Storm? I too am a Thyroid Storm survivor and I have mitral valve prolapse and who knows what else. Doc talked me into a sonogram last year (I am 68), otherwise I would have never known.

So....................get yourself checked and take care of yourself. There is only one you.

And keep writing! You never know whom you might reach out and touch.


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## kdsjen (Apr 25, 2011)

Thanks SO much for sharing your story. I'm hyper too, but not with Graves disease and have been told to wait until I go hypo for treatment. (Doc believes 2 yrs of hyper are the beginning of Hashis and that I'll burn out and go hypo eventually) 
I figure if I'm not *that* bad maybe I should be trying to find triggers or reason behind the flare. I'm still searching for a root cause, but your story is really helpful - makes me believe I can find something before the entire train derails.
If you don't mind sharing, where did you find the best answers? I'm coming up so empty handed I just don't know where else to search...


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## webster2 (May 19, 2011)

Pelzergirl said:


> I did have the uptake scan in 2004 with my original diagnosis.
> 
> To be honest I didn't choose.. Back in the beginning it was so easily controlled that there was no option to remove it. Now, since the flare up, I was told to hot for radiation, and was inline for the surgery when the labs started coming down, surgeon dropped me like a hot potato and back to the endo..
> 
> ...


I also would like to thank you for sharing your story. I commend you for trying a nontraditional route. You've brought up some points I have not considered. I am opting for the surgery route, ASAP. It just seems to fit my objectives. I've had half out 20 years ago, so it really doesn't bother me. I recovered well, and had no noticeable problems until recently. I've never even thought of acupuncture for relief for some of these crazy side effects. I may give that a whirl. Even though I have been a healthy active person, I had umpteen epidural spinal injections before a spinal fusion last year; so acupuncture bears investigation! I am thinking a nutritionist would be helpful too. LOL. to feeling like a trip to the principal's office. My diet, of late, is not the greatest. I've been eating like a kid let loose in the candy shop! This board is the best! Thanks!


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## Pelzergirl (May 24, 2011)

Saw the endo again and got results.. About 7 days ago I felt like I was going hypo and sure enough about to bottom out ~huff~ GRRRRRR I wish I had my own lab!! I hate being at the mercy of them.. how may more years till we get those handheld StarTrek scanners!!

I'm still being a chicken about the acupuncture.. I just can't get past the idea of it&#8230; Noticed on another thread, the person saw an improvement after an atlas adjustment.. ~nod nod~ I don't do it myself anymore.. but I can swear that it does impact all kinds of health issues.. Yeah.. I'm gonna do that again before trying the needles ; ))

Still TRYING to get the gluten out of the diet.. it's pretty hard : ( It's really frustrating that I can't seem to put any weight back on, nothing fits, I look terrible grrrr.. was up 1.5 pounds ~eyeroll~ at today's appt.. thinking really heavy thoughts!! Least not going down anymore! I'm "supplementing" with Ben and Jerry's.. but otherwise it's rice veg and chicken..~yawn~

Still doing the supplements.. Again the endo shrugs and says don't think it will help but that's fine.. Ever-what, I figure he can treat on lab numbers and I'll treat on symptoms..

Endo said my TSH will take longer to return to normal that the T4.. is that true?? I would have thought to have a better number by now.. considering that the T4 is almost hypo, shouldn't the other number be better??

Thanks!!

6/2/11

Free T4 1.6 (0.6 - 1.1)

TSH 0.013 (0.4 - 4.0)

6/30/11

Free T4 0.6 (0.6 - 1.1)

TSH .032 (0.4 - 4.0)


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## Andros (Aug 26, 2009)

Pelzergirl said:


> Saw the endo again and got results.. About 7 days ago I felt like I was going hypo and sure enough about to bottom out ~huff~ GRRRRRR I wish I had my own lab!! I hate being at the mercy of them.. how may more years till we get those handheld StarTrek scanners!!
> 
> I'm still being a chicken about the acupuncture.. I just can't get past the idea of it&#8230; Noticed on another thread, the person saw an improvement after an atlas adjustment.. ~nod nod~ I don't do it myself anymore.. but I can swear that it does impact all kinds of health issues.. Yeah.. I'm gonna do that again before trying the needles ; ))
> 
> ...


There is often a lag time. It has to do with communications and I would not be surprised if you did not have Trab and TBII binding and/or blocking the receptor sites.

How do you feel over all?


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## Pelzergirl (May 24, 2011)

Overall.. I really do feel better.. The weakness and tiredness is still there, but it's not as bad : ) Instead of having the sweating and shaking spells several times an hour, I find now I can go all day without it happening.. The mental fog is almost gone, I can actually think and function.. woohooooo

I'm going to start another thread with an interesting observation on stress and triggers.. thanks so much for all the feedback!!!!


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## Andros (Aug 26, 2009)

Pelzergirl said:


> Overall.. I really do feel better.. The weakness and tiredness is still there, but it's not as bad : ) Instead of having the sweating and shaking spells several times an hour, I find now I can go all day without it happening.. The mental fog is almost gone, I can actually think and function.. woohooooo
> 
> I'm going to start another thread with an interesting observation on stress and triggers.. thanks so much for all the feedback!!!!


I would say that is quite an improvement over all! Not perfect but hey; we are all grateful for small increments when it comes to feeling better.

Stress is a "very" interesting subject.


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## bigfoot (May 13, 2011)

You're totally spot-on. I agree about the supplements, diet, and stress. As someone who didn't pay close enough attention to that stuff until recently, I got quite a wake-up call.

There is definitely something to the naturopath / supplement route. If you ask the naturopath doc, they respond that conventional medicine doesn't have all the answers. If you ask a conventional doc about natural medicine, they don't think it has all the answers. Solution: Use both.

My experience mirrors yours. While waiting an eternity to get into a new endocrinologist, after bouncing between other doctors, I was sick of not feeling well and having no answers. So I went to a naturopath and began various supplements. My goal is to use the natural medicine to optimize my treatment by conventional medicine.

There are miracle stories out there, and I don't doubt those, but my humble opinion is that natural medicine can't fully replace conventional, and vice-versa. Gotta use what works for you!

So glad you are feeling better!! :anim_32:


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## skimordiegirl (Mar 10, 2011)

Sounds a bit like mine actually. I have had GD since I was 19... so 10 years now. I was told all those years ago to get the RAI done... even thought I had TED!! I declined and figured I could take my Tapizole and keep my levels normal... which I have done. Now all these years later my thyroid gland is 2 times it's size and very inflamed. My Dr. is stressing to get it removed. I feel emotionally like I am on a rollercoaster with anxiety and depression going back in forth all while my labs are.... get this... normal!!! My antibodies are through the roof and this is what I am suspecting is the reason for all of this.... any ideas on how to get those down naturally? You are taking the selenium... should I also take something else with that??

Best wishes to you on getting yours sorted. I believe in my heart I am going to get it taken out.... I am just a wreck and now my vision is severely effected.


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