*Gulp* Graves' Disease...

[Skylark]

So I haven't been around here much lately as I've been feeling awful. Tired, brain fogged, depression alternating with insomnia, chronic fatigue, low-grade fevers, heart palpitations, bad reactions to exercise. It's been all I can to do to get to work and do all the gluten-free cooking. I click on the link to the board and getting my exhausted eyes to focus just seems like too much effort.

So I went to the doctor ... again ... and he decided to do a bunch of autoimmune testing. It turns out that I don't have only Hashimoto's thyroiditis anymore. Now I have Graves' disease.

I'm a little scared. Does anyone else have this? What did they do to you? Is someone in a lead suit going to hand me a cup of radioactivity I'm supposed to drink? Will it make me feel better if I do?

Please, any stories about Graves' disease and how you coped would be really welcome.

[cahill]

I dont have graves but after being hypo for many years I was just diagnosed with Hashimoto's in April.

I know cassP has graves in addition to hashimotos so hopefully she will pop in to comment. I have learned a great deal about hashimotos and graves reading her posts.

I do want to say it is GREAT to see you back on the boards, you have been missed.

Hope your feeling better soon.

[mushroom]

I was wondering where your were!!! Yes, cassP is the one to talk to about having both Graves and Hashimoto's. I don't know if she has all the answers yet, but she is sure looking!!!

[Skylark]

Hi guys, thanks for the welcome back. Thanks for letting me know about CassP. I remember she had a lot of thyroid trouble. I'll PM her if she doesn't pop by in a day or two.

I'm so depressed it's just stupid. Fortunately I have a doctor good enough to figure out what's going on.

[cassP]

Hi guys, thanks for the welcome back. Thanks for letting me know about CassP. I remember she had a lot of thyroid trouble. I'll PM her if she doesn't pop by in a day or two.

I'm so depressed it's just stupid. Fortunately I have a doctor good enough to figure out what's going on.

omg Skylark! ive been wondering where u went to and if u were ok! wowwww.. im sorry you're feeling so bad...

so do you and your doc think you're only in Grave's right now??? is it possible you still have both?

i really am not an expert at all- everything ive learned, ive learned it on here, and Stop the Thyroid Madness facebook page, and Mary Shomon's Thyroid Advocate Twitter & Fb. i also plug into Greenmedinfo.com to look for studies on supplements & diseases.

how did they dx you? on your thyroid numbers? or your Grave's antibodies??? or both?

im gonna have to look for some links and post them here... as i cant recall everything. and ive gotta run soon, so i cant go into all my details.

basically im assuming from my numbers that im Hashi dominant (TPO were at 512, and TSI were at 280)... my TSH before meds was Hypo at 11.39... but my T4 and T3 were mid range... im assuming that the Graves stimulated my thyroid to get those numbers up... but i still felt like $hit. and ive NEVER been cold my entire life- always hot.

in brief i imagine that ive been hypo since a kid- and from my numbers and symptoms- probably the graves started up the last 8-10 years.

THIS Is probably why i felt worse on Synthroid- because the Grave's makes your thyroid pump out the T4- so i already had enough T4 u know.

anyways.. oh boy- i need to write A LOT more- dont let me forget- but i gotta meet some friends...

i'd love to know Skylark what your last panel was- your T4, T3, and TSH... and what your TSI antibodies were.... also- and i am really just guessing- but i think it's good to be updated on our TSI & TPO antibodies... im only guessing that MAYBE by the numbers you can see which one is dominating. ????

i also read that Royal Jelly is good for Graves- and i think it is helping me.... but its definitely pricey.

i hope you're okay- and i seriously hope you still have Hashimoto's - or are Hashi dominant- it is my guess that maybe that would be better- cause it seems easier to treat with meds rather than having to look at how they treat Grave's.

i also read to avoid not only gluten, but also SOY with Grave's.

ok, gotta go, sorry :/ FEEL BETTER!!

[Skylark]

Thanks, Cass. I don't have the numbers yet from my labs. My doctor did a full thyroid panel including antibody tests because I was hypo-ish but having periods of insomnia, low-grade fever, and when I went in my blood pressure was 10 pts above normal. I'm depressed, dizzy, can't exercise without getting really tired, and my brain is just mush. It's hard to even hold thoughts long enough to write this. Ick. Fooey.

The nurse called and said that as well as Hashi's antibodies I have Graves now and we scheduled a followup appt. She didn't give me any numbers - the Dr will when I see him next week. My Dr. says the antibody numbers don't track with disease severity anyway. It's kind of like the celiac antibodies - either you have it or you don't. I'm pretty sure I'm more Hashi's than Graves' as I don't have the bulging eyes and I've got mostly hypo symptoms.

I'll post my labs once I get them. I just ordered the Datis Kharrazian book from Amazon but it's on Hashimoto's, not Graves'. His big thing is gluten-free, but I can cut out most soy easily enough. I should probably look at casein too.

[cassP]

Thanks, Cass. I don't have the numbers yet from my labs. My doctor did a full thyroid panel including antibody tests because I was hypo-ish but having periods of insomnia, low-grade fever, and when I went in my blood pressure was 10 pts above normal. I'm depressed, dizzy, can't exercise without getting really tired, and my brain is just mush. It's hard to even hold thoughts long enough to write this. Ick. Fooey.

The nurse called and said that as well as Hashi's antibodies I have Graves now and we scheduled a followup appt. She didn't give me any numbers - the Dr will when I see him next week. My Dr. says the antibody numbers don't track with disease severity anyway. It's kind of like the celiac antibodies - either you have it or you don't. I'm pretty sure I'm more Hashi's than Graves' as I don't have the bulging eyes and I've got mostly hypo symptoms.

I'll post my labs once I get them. I just ordered the Datis Kharrazian book from Amazon but it's on Hashimoto's, not Graves'. His big thing is gluten-free, but I can cut out most soy easily enough. I should probably look at casein too.

yes- a lot of people have also mentioned dairy aggravating the thyroid- but im overwhelmed right now- i just got the 100% gluten-free thing down, and just started working on the 100% soy thing... but it's hard- i had been dreaming of a gluten-free PFCHangs feast for months- and my bff and i just went this weekend and binged and it was fantastic.

i also have to avoid Corn products cause it affects my intestines, and Fructose & Fructans.. so it would be too much to also do the dairy. :/

it's weird- i had some exacerbating "hyper" symptoms when my TSH was still at 4, but i was on Synthroid only. i had a few nights where i couldnt sleep all night.. hot, shaky, some "D", etc

now, my TSH is at .1, and i only had insomnia one night kind of... but a lot of heart palpitations.

it's confusing... and i kind of have to trust my doc right now- because i cant always trust everything my body is doing- for example- i actually slept 11 hours the other day- but Hyperthyroid can also make u exhausted- just like Hypo... so, ya- sometimes i need to look at my numbers and not just my symptoms.

i really hope to one day get my antibodies down one day- because the docs can only do so much when you're feeling hyper & hypo at the same time. i also would like to set up a schedule for me to do regular cardio, and maybe some meditation and yoga- to help soothe my autoimmune system.

ill try to remember to share links later, i got company now... try to relax and know that you will feel better

[Skylark]

Thanks, Cass. It's hard to believe you'll feel better again in the midst of the storm. Also really good to know that hyper- can make you exhausted too. That explains a lot!

[Skylark]

OK, here we go. Reference ranges are in parentheses.

TPO Ab 432 High (0-34)

Antithyroglobulin Ab 61 High (0-40)

T4, free, direct 1.36 (0.82-1.77)

TSH 2.210 (0.450-4.500)

T3 209 High (71-180)

No vitamin problems to account for the depression and fatigue.

D 42 (30-100)

B12 713 (211-946)

Folate >19.9 (>3.0)

My TSH seems a little high but there is plenty of T4 and the T3 is even a little high. My Dr. isn't concerned about the high T3 because I took my pill the morning of the blood test, it isn't far off the reference range, and my TSH isn't super-low. I'm on 137 of T4 and 12.5 of T3. Any more T3 gives me a tremor.

My blood pressure was back to my usual 110/70 today and pulse is fine. Dr. doesn't have much to go on as everything else was normal. He offered Welbutrin, as I can't take SSRIs because of the bipolar. He's thinking maybe an antidepressant will normalize things a bit.

This doctor is also encouraging me to read everything I can get my hands on to see if I can find anything to try. He just wants to hear about it first so I don't do anything dangerous. The Kharrazian book talks about the importance of blood sugar regulation and makes some suggestions for immune system normalizing so I might give that a go.

[cassP]

what about Thyroid Stimulating Antibodies??

also, have you taken any Iodine Supplements recently?? i know there's a hot debate online over supplementing with iodine- im only asking.. cause like you- my numbers werent too off- but i had taken liquid Potassium Iodine a while back- and it sent me into a mania/storm- i think im JUST NOW recovering from it.

also- interesting you talk about taking the t3 in the am before testing- i always took mine before testing- but now everyone on Stop The Thyroid Madness forums say to SKIP the t3 untill AFTER testing. so i guess i'll try that next.

your TSH looks good- i guess. your T4 looks good- altho- i personally felt better when mine was at 1.25. when my T4 got up to 1.44 i started having more hyper symptoms. your T3 looks high (altho im not familiar with that range) my range goes up to 4.4. my T3 is now above range- and ive got palpitations/racing heart/pounding heart. ???

next im going to ask my doc for a ferritin test- as the author of STTM says that can lead to the pounding of the heart. it's weird- i most of the time feel better since being on meds- but all of these thyroid flare ups- usually at night with palpitations is getting old... and sometimes scary.

i hope u feel better soon!

[cassP]

ps- i saw this the other day- helpful advice- and funny the first part about reversed levels of cortisol talks about the blood sugar balance...

Open Original Shared Link

[Skylark]

Cass, check this out!

Open Original Shared Link

I moved to an area with fluoridated water two years ago. The thyroid trouble got worse within months.

[Greenling]

Hi,

I don't mean to butt in on your conversation, but I was diagnosed with Graves in 2000. I had the following symptoms that I recall: insomnia, crushing fatigue (with insane bursts of energy), heat intolerance, dry and itchy skin, headaches, nausea, increased hunger, loose stools, shaky hands, etc. I was miserable, in short. This was long before I was diagnosed with Celiac (that happened just this year), but I have a feeling the Celiac had begun long before 2000 as I had symptoms I didn't recognize (until now).

Long story short, I had my thyroid abladed (radioactive iodine) and then removed (thyroidectomy in 2008). Looking back, I would now have gone straight for the thyroidectomy (as I had Hashi's at the same time as the Graves and that made the ablasion less effective). My docs were never able to get my synthroid dosage to a stable level (up and down for 9 years) as my thryoid would sporadically produce hormone. My main symptoms between the two procedures (2001-2008) were fever, cough, and high inflammation levels in blood tests (serum ferritin, CR-P, sed rate). As it turns out, the theory is that my thyroid became inflamed after the ablasion (parts survived due to the Hashi's and then the Graves' antibodies hammered them) and my body just wouldn't calm down. The solution to the fevers was to simply raise my thyroid hormone levels to hyperactivity levels (and the fever would go away). I do NOT remember those years fondly. Knowing now that I have Celiac, I think a gluten-free diet would have greatly helped or solved this problem (especially after the thyroidectomy) as that would have helped with the inflammation.

In the end, I'm gluten-free now for 9 weeks and my inflammation levels are now normal. I feel better than I have in years. As for the thyroid, I take the generic Levothyroxin (I think that's what it's called) and I finally feel like I'm on an "even keel" (since my thyroid can't contribute to the mess). Before (for the last 11 years), I'd felt like a marionette with someone else pulling my strings. My GI doctor told me to watch for hyperactive symptoms as my small intestine heals as I will need less hormone replacement as time goes by. I've already had my dose reduced once and think I'm ready for another reduction. So, even though I'm a little hyper now, it's a better hyper than before the thyroidectomy (if that makes sense at all).

So, in short, I don't regret the ablasion or the surgery, but I'd choose the surgery now. It was a major surgery, but now I don't have to worry about things deteriorating with the Graves (or the Hashi's).

I hope that you both feel better soon. It is not fun riding the up-and-down thyroid rollercoaster! Hang in there!

Greenling

[Skylark]

Thanks for sharing your story.

I have been reading a lot and I think all my symptoms right now are undertreated hypo. I'm wondering if the fever and elevated blood pressure I had on one Dr. visit was just a virus? It hasn't happened since. I'm tired, brain fogged, horribly dizzy, no memory, no concentration, no motivation, resting pulse is quite low, and I recover poorly from exercise, though I feel a little better while I'm moving.

I can't decide whether to bug my doctor for natural thyroid or just ask for more T4 since I am on some T3. At this point, I am much less worried about bones than feeling normal again.

[Greenling]

I have been reading a lot and I think all my symptoms right now are undertreated hypo. I'm wondering if the fever and elevated blood pressure I had on one Dr. visit was just a virus? It hasn't happened since. I'm tired, brain fogged, horribly dizzy, no memory, no concentration, no motivation, resting pulse is quite low, and I recover poorly from exercise, though I feel a little better while I'm moving.

I had those symptoms when I was both hypo and hyper the longer the problem went on, so it became tricky towards the end to tell what was going on. The heat intolerance was my best hint (as I was colder when hypo and warm when hyper). But I think when you have both conditions going on at the same time (Graves and Hashi's), it becomes much harder to determine which one is "winning" at any given time.

I can't decide whether to bug my doctor for natural thyroid or just ask for more T4 since I am on some T3. At this point, I am much less worried about bones than feeling normal again.

You could always supplement with some extra calcium+D if you need to push your dose up a bit. The supplementation helped me keep my bone density steady for the three years between tests (even with the undiagnosed Celiac). However, it tended to help mask some GI problems.

Hope you're feeling better soon.

[cassP]

Cass, check this out!

Open Original Shared Link

I moved to an area with fluoridated water two years ago. The thyroid trouble got worse within months.

hey skylark- yes- i have just learned about the fluoride connection since being diagnosed last fall. its pretty awful. but i was under the assumption that water fluoridation was completely nationwide, no???? i have heard recently that NY is taking steps to no longer fluoridate the water, and i saw something recently in florida- that they want to not remove but lower the dose- oh joy- just take it all out, geez

anyways, you got me thinking today... when i look back at my life and symptoms- i think i probably went in and out of remission... i first got shortness of breath and panic attacks in my teens, then in my 20s... and i remember when i would go do a contract in japan- the shortness of breath would disappear- i just thought it was cause i was happier and exercising, but maybe it was because they dont fluoridate their water in japan.. ALTHO i still used regular toothpaste. ???

i hope you're feeling better!!! im kind of having ruff anxiety... right now- my heart is pounding.. this is getting really old.

[Skylark]

Meh. It comes and goes. Heart palpitations yesterday when I tried to walk too fast but today I actually sort of have a brain. The anxiety is obnoxious, I totally agree!

Fluoride comes in lots of places. If you get toothpaste AND water AND pesticide residues (Japan might use different stuff) it can be a pretty big cumulative dose in the US.

California was very slow to adopt water fluoridation, with a lot of activists fighting it. Health & Human Services is considering a proposal to lower fluoridation from 1.0 ppm to 0.7 nationwide. "Oops, sorry. We added too much."

[cassP]

Meh. It comes and goes. Heart palpitations yesterday when I tried to walk too fast but today I actually sort of have a brain. The anxiety is obnoxious, I totally agree!

Fluoride comes in lots of places. If you get toothpaste AND water AND pesticide residues (Japan might use different stuff) it can be a pretty big cumulative dose in the US.

California was very slow to adopt water fluoridation, with a lot of activists fighting it. Health & Human Services is considering a proposal to lower fluoridation from 1.0 ppm to 0.7 nationwide. "Oops, sorry. We added too much."

ya, its ridiculous

how bout things like iron & ferritin, vitamin D, B12, etc... oh and adrenals? have u had these things checked? ive been on the Stop the Thyroid Madness forums a lot - and learning a lot- but it's still so very complicated. apparently if all these things are off- then our thyroid symptoms can be a lot worse than they have to be.

i just found out i was below range on Ferritin- so i started supplementing with a little iron at night- a nonconstipating kind. my palpitations went away- but then they were pounding again last night ?????

im still trying to understand it all...

[Skylark]

B12, D, B6 all good and I show no signs of iron deficiency or anemia. My supplement has plenty of all of those except D, and I take extra of that.

As far as I can tell, the whole "adrenal fatigue" thing is one of those misleading alternative health fads. Adrenal failure is actually very rare. Adrenals do not function correctly in thyroid patients but the cure is to fix the thyroid. Cortisol and DHEA people take are not safe and tend to make people feel worse in the long run rather than better. Measuring cortisol meaningfully to detect problems outside of obvious adrenal malfunction like Cushing's or Addison's is tricky because cortisol has a diurnal rhythm, and "normal" varies widely.

I woke up in the middle of the night with anxiety last night. Totally freaked out about stupid stuff. Stupid antidepressant is messing with sleep. I seem to take one step forward and one back.

[cassP]

B12, D, B6 all good and I show no signs of iron deficiency or anemia. My supplement has plenty of all of those except D, and I take extra of that.

As far as I can tell, the whole "adrenal fatigue" thing is one of those misleading alternative health fads. Adrenal failure is actually very rare. Adrenals do not function correctly in thyroid patients but the cure is to fix the thyroid. Cortisol and DHEA people take are not safe and tend to make people feel worse in the long run rather than better. Measuring cortisol meaningfully to detect problems outside of obvious adrenal malfunction like Cushing's or Addison's is tricky because cortisol has a diurnal rhythm, and "normal" varies widely.

I woke up in the middle of the night with anxiety last night. Totally freaked out about stupid stuff. Stupid antidepressant is messing with sleep. I seem to take one step forward and one back.

1st: you should still get your iron/ferritin checked. my Endo ran a CBC, said everything looked good- and no signs of Anemia... i asked my PCP for the test anyways- and my ferritin was below range- enough to be contributing to my palpitations & S.O.B. .... so just make sure to cross all your Ts..

2nd- i HOPE you're right about the adrenals- as i am not so sure my Endo is open to some of the treatments. but everyone i talk to on thyroid forums swear by the 24 hour saliva test, and proper meds to help the adrenals

i think waking up in the middle of the night is a "hyper" symptom... i had it in the past, and i HOPE its behind me... What antidepressants are you on??? i heard they can mess with the thyroid or thyroid meds... cant remember .. and i also read that PROZAC is made from fluoride.

ALSO- i JUST learned today that Fluoride is in Teflon

yes- i know teflon is bad period, i know, really bad... but i didnt know it had fluoride too!???!!! geez

hope your storm settles down soon!

[Skylark]

Thanks. I'll look in to the ferritin then!

Waking up in the middle of the night is from the Wellbutrin. Antidepressants always do that to me, but it's better than being horribly depressed while I try to sort things out. Prozac and lithium are the ones that mess with thyroid.

Be really careful with this adrenal stuff It's all Internet lore and some of the "treatments" are dangerous. Getting reliable 24-hour salivary cortisol takes repeated measurements across 2-3 days. You can't measure one day and get a reliable reading. Also medications, smoking, and even foods can affect the readings.

[beachbirdie]

B12, D, B6 all good and I show no signs of iron deficiency or anemia. My supplement has plenty of all of those except D, and I take extra of that.

As far as I can tell, the whole "adrenal fatigue" thing is one of those misleading alternative health fads. Adrenal failure is actually very rare. Adrenals do not function correctly in thyroid patients but the cure is to fix the thyroid. Cortisol and DHEA people take are not safe and tend to make people feel worse in the long run rather than better. Measuring cortisol meaningfully to detect problems outside of obvious adrenal malfunction like Cushing's or Addison's is tricky because cortisol has a diurnal rhythm, and "normal" varies widely.

I woke up in the middle of the night with anxiety last night. Totally freaked out about stupid stuff. Stupid antidepressant is messing with sleep. I seem to take one step forward and one back.

Forgive me butting in, but I've been skimming your thread and saw a couple of things I just wanted to drop a quick comment on. I don't have Graves, so don't know much about it. However, Graves is not the only thing that causes anxiety! The only panic attacks I ever had in my life were when I was struggling before my diagnosis of hypothyroid. I had terrible palpitations as well, they were going to put me on all kinds of medicine to control that! It was scary. So as you said earlier, you might actually be a little undertreated on your thyroid.

It doesn't matter much if you get your T3 and T4 from natural thyroid or synthetic, but you do need to find the right "mix" for your body. Natural thyroid by itself has very different T4:T3 ratio (80%/20%) than the human thyroid, (95%/5%) and for most people it provides too much T3. I am taking Unithroid (like Synthroid) and Nature-throid (like Armour) mixed; I didn't do well at all on synthetic alone. I also cannot have any TSH, I didn't do well until I got my TSH suppressed.

Seems like if you were hyper from Grave's, you'd have a very low TSH.

You posted some thyroid labs...the T3 doesn't say which T3 measure it is...it makes a difference if it's "Total T3" or "Free T3". If it's total, you might actually have a lot of T3 that's bound up and not usable by your body, thus rendering you effectively hypo because your cells can't pick it up. I always get the Free T3 done, and my doc does the Reverse T3 as well. Getting some of the thyroid ratios done (I think FTI...Free Thyroid Index) is sometimes helpful.

One of the best sources I've found (in addition to Mary Shomon's site!) is Open Original Shared Link. It's pretty technical, being an online textbook created BY docs FOR docs, but it's a wealth of info on thyroid. It helped me a lot to understand my Hashimoto's. Another GREAT group though it's kind of quiet right now, is the newsgroup Open Original Shared Link (you'll have to find the newsgroup by clicking the links in the "Get started" box on upper right). There are some educated people there who can give in depth help; there is a chemist, and a couple of other really well-studied folks you can trust.

I sure hear you on the fluoride. Though I've been aware of fluoride's dangers all my life (my dad started fighting it in the 1950s) I couldn't avoid the stuff when we had to move to a city that fluoridates. I got sick within three years of moving here even though I drank purified water. It's in everything...canned foods, restaurant foods, bottled beverages, very hard to avoid. And very hard on the thyroid as it is an iodine inhibitor. Your thyroid, given a choice, will pick up the fluoride before it picks up the iodine.

You can get a brain-load of scary fluoride information at Open Original Shared Link. Enough scholarly information (and current news) to scare the pants off anyone. It's bad for the brain, bad for the bones, and bad for the hormones.

best,

beachbirdie

[Skylark]

Thanks! You are not butting in at all and the extra info is very welcome. As it turns out, I'm feeling better on a little more thyroid. I came to the same conclusion after reading everything I could get my hands on so it's really nice to see someone else say the same. I took my T3 from 12.5 micrograms to a divided dose of 25 micrograms, with the second half of the pill mid-afternoon. I don't get the tremor and the brain fog has cleared. I'm much closer to the 1:4.33 ratio of T3:T4 that is supposed to work best.

Now I have to get back off the stupid antidepressant that is giving me insomnia. Dr. really wants me to continue it for 4-6 months to be sure I don't slip back again but I'm not sure I can stand it.

The T3 is total T3. I thought my doctor was ordering FT3 but I checked on Labcorp's website to see how they label tests and the reference ranges. I would be surprised if I lost T3 responsiveness, as I was fine on 125 micrograms of T4 alone before I moved.

As for fluoride, I have read quite a bit of the 2006 NAS report. It is disturbing that we are continuing to fluoridate water. I'm considering taking another 100 micrograms a day of iodine beyond the 100-150 I get in my supplement, as it's been shown to lessen the negative effects. The problem is that iodine has also been shown to increase the levels of Hashi's antibodies. *sigh*