Grave's Disease and Hyperthyroidism

Hello Love!

I was diagnosed with Graves Disease induced Hyperthyroidism in June. The most important thing I've learned from research and reading forums is that everyone reacts to the hyperthyroidism and the treatment differently. For me personally, it's been hard. My weight has been very stable my whole life (130 lb, 5'4"), but since I've been on the anti-thyroid meds for the past three months I've gained 26 pounds. I went into the treatment with open eyes. I knew that I needed to be careful with my calories so I stuck around 1400/day and I I started exercising for an hour four times a week. Nothing seems to help and I just keep gaining. My thyroid levels are still four times the norm so I'm also on a beta blocker to keep the heart palpitations under control, cardio is still difficult though. My levels didn't really come down when I was on the methimazole so I'm off of that and was considering RAI, but now I'm presenting with eye symptoms so that's looking less viable. It's very frustrating, but hopefully you'll fare better than I have. If you find any routines that seem to work then let me know! I'm looking for answers so let me know if you find any!

I'm dealing with the same thing right now! I just found out this week that my thyroid is messed up! I'm still not sure if it's graves' or hypothyroidism.. I have many different symptoms that are a mix of hypo and hyper.. I have put on 40+ pounds in NO time.. which is why I thought hypo.. but my doc said possbile graves'.. how did your appointment with the endo go? I am still waiting on my appointment date with mine! hoping for the best!!

Hi, Everyone.

Just happened to be surfing and figured I'd check in on anyone dealing with Graves' Disease lately. I've thought about putting my healing story up on the internet somewhere (just so others can see what worked for someone else and get ideas) but I haven't as of yet so here it goes. Hope you find what works for you...I'm not a doctor or nutritionist but I like knowing about my body, especially when something goes wrong.

The Shortest Version I'm capable of:

-Started feeling weird late 2006, went to Dr., tested thyroid b/c my mom had problems at my age.
-TSH levels confirmed hyper, radioactive-iodine uptake confirmed Graves'.
-Endo recommended some med (I forget what) to "calm thyroid down" and I'd have to take for 1 1/2 to 2 years to see if it worked and if not get my thyroid removed or zapped, then be on hormones for life.

What I did:

-I said thank you, took nothing and started looking up things about the role of the thyroid and the endocrine system (all the while feeling SUPER ****ty...like I was hungover constantly)

What I "discovered":

-Learned the glands of the endocrine system were in a line like those "things" I had learned about in that yoga class I had taken for a year, 5 years earlier.
-Researched those "things" and found they were called chakras.
-Felt a bit outta my element with that idea so decided to track down that yoga teacher (found out she had moved back to England but got her email and wrote to her about what was happening to me).

What She said:

-Don't panic.
-Trust yourself.

BEST ADVICE EVER!

-She also recommended the book "The Thyroid Solution."

What I did next:

-I read a lot. The book that helped me the most was "Living Well with Graves' Disease and Hyperthyroidism"

http://www.amazon.com/Living-Well-Graves-Disease-Hyperthyroidism/dp/0060730196

Why it helped:

-I resonated with a small bit of info I found in it - Iron, Copper and Zinc work together in the body. A theory presented was that too much of one can deplete the others. Further, supposedly, too little copper could contribute to hyperthyroidism.
- DING, DING!! I had been taking Zinc pills (prior to diagnoses). Once diagnosed I also was told I was anemic (low iron) - WHOA! Too much Zinc may have contributed to my low copper (Graves') and low iron (anemia).

What I did once this all started clicking:

-I decided I wanted my approach to be least evasive to most evasive.
-I decided I wanted to be open-minded and maybe try stuff that I thought was weird and a bit "wacko" but supposedly might help (like Reiki).
-DID NOT want to take any more pills for minerals and decided to research foods and nutritional info more thoroughly.
-Made a plan.

Here's what I did:

-Looked up foods low in zinc but high in copper and iron. (I used Nutrition Data Nutrient Search Tool)

http://nutritiondata.self.com/tools/nutrient-search

-I increased those foods in my diet and really reduced anything with zinc (lots of foods and cough drops add zinc)
-I stopped consuming alcohol and sweets (mainly because I felt SUPER crappy if I had alcohol or anything with too much sugar)
-But I missed beer so researched beer. BASS ALE is brewed in copper - COOL. That's one of my favs. When I really wanted a beer I only had one and only Bass.
-I bought cast iron skillet and cooked in that.
-Buckwheat groats became my breakfast grain
-I tried Reiki and had a GREAT experience with it. Just went the one time for the Graves' but have seen the same person about 3 more times since for other things. (I called around before just going to someone. Made sure I liked their vibe).
-I incorporated mediation, visualization (of my thyroid healing) as well as this cool breathing exercise where you put your chin to your chest and inhale quickly and deeply and, if done properly, it feels as though you are breathing through your throat. Repeat 4 times. [I had a phenomenal experience with this...the lump I felt in my throat (that doctors could not feel) went away during this exercise].
-I started craving cruciferous vegetables only to discover later that they help calm the thyroid down!

http://thyroid.about.com/od/symptomsrisks/a/All-About-Goitrogens-thyroid.htm

-I read about chakras and did stuff for the throat chakra

http://chakraenergy.com/

The BIG THING I did:

-Of all the things I did I personally think that one has helped my thyroid the most. In reading about the throat chakra, somewhere it was recommended that a person with a blocked throat chakra may have something to say. The info I read mentioned healing methods such as singing or reading poetry or talk therapy. While a lot of that sounded good I knew talk therapy was likely the best option and I might as well give it a try.

-I used the Psychology Today website to find someone in my area that I liked.

End Result so far:

-Within a few months of making these changes in my life my thyroid calmed down. I NEVER TOOK MEDICATION.
-I have still been in therapy on and off over the past 7 years. A lot of things have come up. There have been a lot of things I've never talked about with others and I personally think that my body turned to Graves' to help me get to therapy. I am currently dealing with some big issues which are difficult but I know 100% that this is what I'm supposed to be doing.
-I never went to the Endo again after that first visit but my regular doctor as well as my GYN continue to monitor my thyroid levels regularly. I'm no longer anemic but close so I have to watch my iron. My doctors know everything I've done and I'm very fortunate to have their support in what I do. They also know of my therapy. Including my doctors on this step was a great choice for me because they know a lot of my physical aliments come from what I am working through emotionally. (I take no meds at all...not that I don't think they work for some, but I knew that wasn't what I needed at this time. It has been a very good choice for me).

Oh yeah, one more thing that is kinda weird but I REALLY think it helped:

-One day, early on, I felt really sucky and super tired. For me, no matter how long I slept I felt tired and as if I was hungover. I had the thought that it felt as if my blood was poisoned. I decided I wanted to donate blood. Now...please understand...I am NOT a blood/needle fan at all. But I felt so bad and I just wanted the "bad blood" out.
-Even though this was just my theory, I didn't want to make anyone sick by donating Graves' blood. I researched the requirements...here's a good place to start:

http://www.redcrossblood.org/donating-blood/eligibility-requirements

-Somewhere I found that if I had the meds in my system I couldn't donate. But that was cool...I didn't take any.
-But I felt like crap..so I waited until I felt a bit better.
-But my iron was low....that's okay...they don't take it if your low. They send you home with a list of foods to eat to increase your iron. I ate those like mad and was good to go.
-Donated blood a few times fairly regularly. (maybe 5-7 times since 2007).

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Interesting side note:

During all my research I read about how one's eyes can bug out due to the pressure. To me, my eyes felt strange and one even seemed a bit more "open" than usual. I included my optometrist on what was going on and he measured my eye pressure for me. It fell within the normal range (but at the high end). Thing is...he's tested my eye pressure several times since that bout of Graves' and my eye pressure (while still within the normal range) has never been as high as during that first visit.

---

DON'T PANIC.

TRUST YOURSELF.

FEEL BETTER.

With Love,

9thChakra

I was diagnosed with graves' disease along with the eye disease that sometimes goes with it. I had a huge goiter and many nodules too. I was put on anti-thyroid meds to start along with beta blockers to slow down my crazy fast heartbeat. The anti-thyroid meds didn't really bring my levels down, but I gained weight so quickly. In April 2012, I weighed 140 at the dr. office. By December 2012 when I had my thyroidectomy, I weighed 170 lbs. Crazy! I wish I had reduced my intake in anticipation of weight gain (my Dr. warned me that I would probably gain weight and he was right!), but hindsight is always 20/20. This past year following my thyroidectomy, I gained another 10 lbs, but it seems to have leveled off once I got my Synthroid and Cytomel dosages correct. Now I am losing weight and not finding it as difficult as I anticipated it would be.

After my thyroidectomy, I regretted having it removed because it was so difficult getting my replacement med dosage correct, but now that it is correct I feel SO much better than I did when I still had my thyroid. I remember being anxious, irritable, and HOT all the time. It was a difficult way to live for both my husband and myself. Now I feel like a normal person and no longer regret having my thyroid removed. It was so big that it was choking me, so I didn't really have a choice in the matter anyway!

Good luck with your treatment and be patient. It takes time to get this sorted out and you won't feel better right away, but once everything gets sorted out, you'll notice a difference. The weight gain... well I don't know if it can be prevented although I'm sure it can. But please know that having thyroid problems is NOT a death sentence for your goal weight. I've been on my diet for 2.5 weeks and lost nearly 7 lbs so far!

It can take a long time to stabilize your thyroid levels. Even if you decide to get the radioactive iodine (RAI) or a thyroidectomy, you'll still have to find the right doses of thyroid replacement meds. It can take months (and, unfortunately, sometimes years) for you to finally feel close to 100% better. If you've only been on meds for 3-4 weeks, they haven't really had a chance to work yet. In July, we finally found the right dose of methimazole for me. This was 11 months after diagnosis and a few swings between hypo and hyper. It takes time. Be patient and don't overdo it.

I'm dealing with the same thing right now! I just found out this week that my thyroid is messed up! I'm still not sure if it's graves' or hypothyroidism.. I have many different symptoms that are a mix of hypo and hyper.. I have put on 40+ pounds in NO time.. which is why I thought hypo.. but my doc said possbile graves'.. how did your appointment with the endo go? I am still waiting on my appointment date with mine! hoping for the best!!

I'm hypo, and when they put me on meds, the dosage was too high and I ended up being hyper. I GAINED weight rapidly due to being hungry all the time, even though my metabolism was faster.

My hubs has Graves. He was Dx'ed a few years ago, not to worry you, but the others are right. You're in a wild ride that may last a few years until you get your hormone levels under control. My hubs has his under control, nearly 2 years later and is off meds (although has to get his levels checked every 6 months or so). He managed to quit smoking while fighting with this and gained about 30-40 pounds (although he was always small before - 125 to 140 lb).

Read, research and study will be your best friend. Don't expect an instant recovery, this will take time.

And please - if you live with anyone or are dating, have a SO, etc let them know. Graves can be nasty on relationships, since it messes with hormones, can and probably mess with your mental health. If I hadn't done research on it, I wouldn't be married to my hubs anymore. It got so BAD that even with knowing, there were times I had to leave because neither of us could deal. Thankfully I knew he was suffering from hormone issues and wasn't insane. It was & still is hard to live & deal with him.

Good luck.

I'm HYPO like you. Mine started after having my daughter. I thought I had post partum depression, sad, confused, tired etc. Well, my TSH was 64, and I was nearly in a coma. they put me on both Cytomel and Synthroid, my TSH went down to 2.3 which is my normal and I'm feeling great, HOWEVER, I'm 40 lb heavier and really disgusted with how I feel in my new body. Not sure what to do, tried everything.

At the end of my rope here.

I was just hospitalized for my thyroid. I gained 42 lbs in fluid in 3 days. I was also diagnosed with anemia. I'm kinda confused. I'm assuming mine is Hypo... my TSH was 4.2 They put me on Synthroid. I am wanting to read other's stories of diagnosis to compare with mine!

Hey, Gabbygirl!

If you are confused about what is happening to your body, you really may want to consider getting a few books on the thyroid. Do some research and make a list questions for your doctors. Don't be embarrassed to bring the list with you and write down what they say. Get a second opinion as well if you are still confused or don't feel like they are listening to you or explaining things well. There are some sites that rate doctor's now...you can look up their ratings to find one you might like better.

I also get copies of all my medical records at the end of each year. This allows me to review what has happened to me over time. It's kinda amazing what you may forget.

Also, I think it's too bad more people keep better records on their cars than they do on themselves.

TSH (thyroid stimulating hormone) is activated by the pituitary gland (The Master Gland) in your brain.

Typically, when your TSH is low (like mine was) that means your thyroid is HYPERACTIVE (too active). When your TSH is high that means your thyroid is HYPOACTIVE (under active).

The reason why this seems confusing is understandable - why low TSH numbers if high thyroid and vice versa?

In short: The Pituitary Gland - the Master Gland (in the brain) - monitors the thyroid and tells it how much hormone to make. The "language" that the Pituitary Gland speaks is TSH. When everything is okay then nothing is out of whack.

When something happens which blocks the Pituitary Gland's ability to "speak" to the thyroid, then the Pituitary Gland has to send a more clear message. When the thyroid is HYPER, as in my case, the Pituitary Gland says, "Yo!! Thyroid!! Calm down, calm down!!" Thus it "tells" the thyroid "less, less" by sending a lower amount of TSH. The opposite is also true. If the thyroid is somehow too slow then the Pituitary Gland says, "Yo!! Thyroid!! Do something, do something!!" Thus it "tells" the thyroid "more, more" by sending a higher amount of TSH.

When I did my research and learned that this was what was going on in my body, I opted not to take the medicine that the endo was recommended. Essentially, my body was telling my thyroid to calm down. I didn't want to also take medicine that "told" my thyroid to calm down. I opted to focus on what I needed to do to "unblock" the receptors on my thyroid so that the message of my brain could get through.

Anyway...best to all!

9thChakra

I am new to MFP. I was diagnosed with Graves in 2007 and had my thyroidectomy in 2008. I weighed 138 at the time of my diagnosis. I was getting ready to have a tummy tuck to remove the excess skin from having twins and toxemia with my pregnancy. Anyway, I would give anything to be "fat" at 138 right now!! I am almost as big as I was when I was preg with twins. I am on synthroid 150 one day and 175 the next. I am tired and have no motivation to do anything that I do not have to do. I work, come home, help kids with homework and crash. If I have to go somewhere, I make myself go and enjoy myself, but when I am home, I am sleepy and sluggish. The docs say that my levels are normal, but I feel like crap!!!!!!!!!!!!!!! I feel ugly, fat and gross!! I went to a trainer and worked out like a crazy for 6 months. Considering that I need to lose like 60-70 pounds, I was not proud of the 10 that I lost 6 months from working out like crazy and eating 6 small meals a day consisting of 1200 calories a day. HELP...I am frustrated! Any suggestions????

I did not realize leg cramps were a side affect of meds..I get them from time to time, and when I get them, I am not usually exerting myself tremendously..
I have thought about going to a different doc. If I had joined this site when I got diagnosed, I would have definitely gotten a second opinion..

Thanks

Nikkincs, thank you for your input! Please keep us updated on your progress. I was diagnosed with Graves' around November 2012... I'm currently taking methimazole and everything has stabilized in the normal range (I did come off meds for a week or so before the uptake scan and my levels shot up and I felt like crap, so I know I definitely need them at this point). I also have nodules, which have been biopsied (benign, thank God).

I'm lucky to have an endo that supports my decision to stay on methimazole and isn't pushing me to get RAI. He is also very much aware of the effects of diet and exercise on the thyroid, and I've just been cleared to exercise again (yay!). We also discussed making minor diet changes. He recommends against a complete diet overhaul, but suggests adding/eliminating one thing at a time so that we can figure which foods may make me feel better/worse.