[Anonymous]

#1020385

I am confused and concerned (and thankful for all of you!) I don’t feel like I’m getting better and I had my RAI in December. After reading these posts it I think I should change Endos. (They are scarce in NW Arkansas). Please bare with me for a minute as I tell the facts and hope that you can advise me about switching.

I was diagnosed by Endo in October. No options given except RAI. Scheduled for RAI 1st of Dec. but not contacted. Rec’d call from Hospital that I was missing appt. Reschedule next week. Called Drs. office for info on RAI was told to call Hospital. Hospital advice don’t eat after midnight. Was told after RAI I was fine at home…just flush twice and don’t hug or drink after anybody. Okay to return to work.

Endo scheduled follow-up for February. Doc said TSH from test done by Family Care Doc after RAI still low but put me on Synthroid as I would go hypo. Told me to loose weight and eat more fruits. I told him of symptoms of muscle weakness in legs (felt like feet were heavy), dizziness and hips hurt so bad when I walked that I couldn’t even stand up for 30 min or go shopping. Told losing weight was all I needed. Drew blood to test TSH. Scheduled follow-up in June. Called two weeks later said TSH was 20. Said “I’m surprised you’re not [silence]” and increased dose to 150 mcg.
Feeling bad I saw Primary Care doc to draw blood and test. Called next day and said TSH was high and she had talked to Endo. He wanted to up my dosage. When I went to pick up prescription it was for .88 mcgs. Pharmacist alerted me that dose was very low and to check and see if it was supposed to be more. Called Endo nurse. Three days later she called to tell me that he meant to make it 175 mcgs. (All this was going on between February and May).

I saw Endo in June, no blood drawn. Said will check at follow-up in August. A few weeks later, I asked Family Doc to check blood. New reading .24 and she reduced Synthroid to 150 mcgs.

I don’t feel good and I feel like a hypochondriac going to the family doctor. I look okay on the outside. They are very nice but I’m not used to frequenting a doctors office this much. The last couple of days I’ve been breaking out in sweats like like at the beginning of Graves. My heart beats at time like I’ve been frightened–even when I wake up. It will calm down with Inderal.

I have not been given any information on Graves disease by either doctor except the standard–autoimmune/overactive thyroid. Nothing on life with Graves. I figured you just got better after the RAI and the dose was regulated. Had no idea that muscle weakness/puffy eyes, swelling, leg aches etc. were common with Graves. Everything I’ve learned I’ve learned from you all. (BTW, I’m purchasing “Graves Disease in our own words” tonight!)

I went to a walk-in clinic yesterday (family doc was gone) and the nurse practitioner asked who the endo was. When I told her she told what a great doctor he is. I didn’t say anything. He is well liked in the area and a super “nice” guy. After talking to her I found myself thinking the care I was getting was fine. Deep down I feel like I’ve been diagnosed, given RAI, and we’re making a recipe from “scratch” with the medicine and if I’d lose weight all would be well.

This is way too long, and if you made it this far, thank you. Pls. advise whether the care I’m getting is typical or if I should find someone else even if it means going to another city.

It sounds like some of you are getting really good care (i.e. checking your TSH more than every 3-4 months while you stablize). I am happy for you. I am trying to be patient but am wondering if patience with this guy is going to keep me sick longer.

Once again, thanks a million. I’m off to buy my book!

[Anonymous]

#1076989

Hi Teresa,

I think your story about your endo is pretty typical. Recently, there was a post from a woman has a endo who has Graves herself — what luck! This may be something you have to read everything you can find on and manage your own health. I’m still working it out with the help of my doctors even after nine months post-surgery. My endo says basically, the same as yours. Thank goodness we have each other.

Linda

[Anonymous]

#1076990

Thanks Linda. Finding each other is the most encouraging thing that has happened since I acquired this disease. As women we tend to put our efforts into taking care of others–perhaps this disease is a “wake-up” call to take care of ourselves, too. Funny to use the term “wake-up” though…because I’m ready for a nap right now and it’s 2:30 in the afternoon! In the meantime, I’ll keep monitoring and adjusting and looking to this site to help me through. I look forward to the day when I can tell others I’m doing fine and be that example of someone that made it through! –Teresa

[Anonymous]

#1076991

Teresa,
I don’t think your situation is normal. I think your seeing an Endo that does not have many Graves patients. When I was first diagnosed, my family friend cardiologist told me to get to an Endo that specializes in Thyroid. Check out http://www.aace.com That is the American Association Of Clinical Endocrinologists and there is a link from ngdf to there. This lists Endos with their specialties. Both the docs I considered were listed there. I also switched to a PCP that is an Internist rather than the GP that I had been seeing. My GP didn’t want to do a referral to an Endo. I saw red lights and called my cardiologist friend.

You are right that we have to learn about this ourselves. At this time I feel so powerless over my body, but with knowledge about what is happening, I do have confidence that I will make it thru this.

Good luck!

Cindy

[Anonymous]

#1076992

Hi Teresa,

From your post I wasn’t quite sure how many weeks after your RAI was done that your endo scheduled you for a TSH level but this was my experience. There was some problem with the paperwork getting lost so the RAI got delayed a couple of weeks but I did finally meet with the radiologist who gave me more precautions – stay away from people and pets for four days. It was okay for my husband to stay in another part of the house but he had to prepare all the food.

My endo usually schedules his patients for a followup six weeks after RAI but he was gone, so I went the seventh week. He usually doesn’t order labs then but he saw from my symptoms that I was going underactive fast, so he told me to get labs the next week and then remembered he was going to be gone again, so I had to wait two weeks and got extremely tired in the meantime. He had told me if I felt really bad and had joint pain before that time to go ahead and go to my family doctor and have him order the TSH and start medication if necessary, which I could have done but wanted to wait since it is a different lab and hassle with my insurance company to do that. I have my own blood pressure cuff that also shows my pulse, so I knew that I was pretty low. I had also double-checked it in the drug stores and it was pretty low there too.

Anyway, I don’t think you should feel bad about going to your family doctor if your endo is not available. Mine actually encourages it. My endo said he will be checking my TSH every six weeks. If yours is checking less than that often then you might want to find another endo.

[Anonymous]

#1076993

Sorry about the delay in answering you. I had tried once but was having problems with my internet connection.

We have a habit of blaming Graves Disease on anything that happens with our bodies. I’ve not ever heard the complaint that you are having. If it continues or gets worse you should see someone and have more tests. When we blame Graves Disease on everything it will delay treatment of another problem happening.

Diane B On-Line Facilitator

[Anonymous]

#1076994

Hi Teresa,

I say “Get a new doctor now!!!” I am newly diagnosed (last month) with Grave’s Disease. I’ve had the symptoms for many years. They’ve gotten much worse over the past year. My doctor is an awesome doctor, BUT…

For the last three years (as long as I’ve been taking the test), my TSH levels have been low. I never really looked at them figuring my doctor would say something if there was a problem. When my symptoms got severe last November, I started going in a lot. My doctor said I needed to lose weight, that’s why I was tired. I had chronic sinus infections, and that’s why I was dizzy all the time. I had constant allergy and asthma symptoms, but the tests were all negative.

In May, I finally got frustrated with my doctor (who was beginning to treat me like a hypochondriac) and said I was tired of treating symptoms, and that my thyroid levels were lower than they should be. I started looking on the internet for what this meant and noticed I had almost all the symptoms of hyperthyroidism, but I still had a lot that weren’t accounted for.

My doctor scheduled me for a thyroid scan which showed two places that were hyper. Then he scheduled me for an ultrasound which showed two large lumps on the right side, and several smaller lumps on the left side of my thyroid. I was sent to Internal Med, and that doctor set me up for an RAI (I was given the three options), and he decided I needed two different thyroid tests. When the results came back, I immediately went on the Web and found out that it meant I had Grave’s Disease. All my other symptoms are on that list. I have almost all, plus some that aren’t listed (such as the allergy like symptoms). After reading posts on this Web, I realize that I’m not alone, and I’m not crazy! :o)

It seems you doctor doesn’t really know what he’s doing, or just doesn’t care. I’d advise you to get another doctor quickly. Also, get on the Web and find as much information as you can, ask the doctor lots of questions, and push to get the treatment you need.

By the way, after I had the RAI, my levels went even lower. From .2 to .02. The doctors have no reason why, but after reading Jake’s old posting, I imagine my thyroid says, “I’m not dying!” and it’s fighting back pretty hard. My symptoms were getting even more severe, and I emailed my doctor (who never answered), then called my Internal Med doctor. He put me on Beta Blockers, which has helped somewhat. I still have to be careful how much energy I put out, but I can at least do clothes and dished now.

I was on this Web site several times before I found the posting. It has helped me a lot to know I’m not alone.

[Anonymous]

#1076995

Oh! And I also gained a lot of weight. Even the Internal Med doctor said I should be losing weight, but Jake explained it wonderfully. Some people DO gain weight with it. I don’t eat enough, never have, so my body hangs on to what it can get. I imagine this is what is happening to you, too. I’m hoping that once I’m past hyper then hypo, I will be able to lose weight since I gained before. :o)

[Anonymous]

#1076996

Diane, I guess the memory loss is kicking in again. I whined so much in the previous post about my symptoms that I don’t know which symptom you’ve never heard of. ha I think I am just learning what is Graves related and what is related to medicine side effects. I’ll be careful to not blame Graves for everything.

Thanks for always being there.

Teresa

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