# Just diagnosed with Graves as an inpatient.



## ctob (Sep 20, 2011)

Hi everyone. I have read several pages on these posts and I wanted to share my story, actually the beginning of my story because I have not had an entire week go by with this new diagnosis. I was extremely sick for almost 2 months. Initially I had severe uncontrollable diarrhea that even caused me embarrassment at untimely moments. Then the vomiting started and I could not keep anything down. I did not have any insurance so after two weeks of not getting better I saw an agent after another week and I had to wait another three weeks for it to be effective and then I had to wait another 9 days to see the doctor.

By this time I had lost 35 pounds and missed three works of work where I was glued to my bed or the toilet and most times I could not even make it to the toilet. When the nurse practitioner saw me on Friday she ordered up an ultrasound and some blood work and said she would call me on Monday with results. She thought it odd that my pulse was so high and you could see my heartbeat ticking up and down in my stomach. Well she never called me back still and by Tuesday I was wretching every hour and looking like a scarecrow. They told me to go to ER. Two hours later I was admitted and the hospitalist came and said your lab work showed very, very high levels and you have hyperthyroidism and I am pretty sure you have Grave's disease. This was confirmed the next day. Then he was telling me how I needed to have radioactive iodine treatment and I am still in a fog all confused.

I thought I had IBS. I wasn't worried and felt this is my lot but am happy to know it is treatable. My symptoms mimicked IBS except for the huge weight loss and racing heart. I thought I pulled a muscle in my heart. I would wake up with pain in the heart and thought it would heal if I rested. Even at rest I went up to 131 when they decided to admit me. I don't remember past the ER and the next thing I know I am on all these monitors and IVs.

One of my clients, I'm a Realtor, said do your job, I don't care if you are sick. I sent him my termination notice and said I don't need the stress you give me. My anxiety went out the window and 5 milligrams of Xanax didn't seem to do anything. I am crying hysterically and I feel so stupid. Up for 48 hours straight in the hospital and couldn't lift myself off the toilet and I am only 123 pounds. One night the nurses found me on the ground and then put an alarm on my bed. I woke up and went the wrong way and ran out of steam before I collapsed.

Doc said I had this for a year and had no signs till last two months. He said it damaged my liver. What does that mean? My left side of my body frequently pains me and I suffer muscle weakness and yesterday my legs would not move me forward and I was leaning over like an animal until my boyfriend could help me straighten up and walk me forward. It hurts to drive too.

I am waiting on the endocrinologist now. I have 10 pills to swallow each day and that doesn't include anxiety or sleeping and even with sleeping pills I wake 15 times during the night to go pee. I can only eat a little at time and need to eat every two hours. I am sticking with fruit for the most part and trying to stay away from iodine containing foods. My boyfriend made me a burger and I promptly threw it up all over the floor. I mistakenly thought I was all better for a moment. Poor guy has to take care of me. I tried to work yesterday and could only make two hours and I was anxious all day. As long as I rest I am ok. I feel like my career is over.

Can't wait to see what the next chapter is. So many stories, long distance doc friend says to listen to doc. Research shows a lot of people are not doing that. Can diet really help? I told doc I was feeling better so I could leave hospital. As long as someone lifted me up and held my hand I managed. I don't think anyone can understand unless you have been through it and how sick it really makes you feel. That's my story so far. Doc friend says it will get better. I'm still scared. I still feel like crying. I suppose it could be worse. It helps to tell my story.


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## desrtbloom (May 23, 2010)

Hi Hun:

Wow, you are definitely being put through the ringer. :hugs:

I can very much relate to everything you have gone through as I was very ill for several months and had many of the symptoms you are having and more. It was terrifying at times. However, the best thing that happened is that I at least was given a diagnosis. Not knowing what is wrong is a lot worse, especially with the variety of symptoms one experiences with Graves' Disease.

Were you given your blood results with ranges by your doctor? If so, please post them as there are many of us that are good with helping you understand your thyroid levels. If not, ask for all your blood test results.

Are you being treated by an endo? If not, you definitely need to be treated since you have left the hospital. You mentioned that you are taking a variety of drugs. What meds are you taking, specifically where you given Methazimole to try and get your thryoid blood levels under control? Did you have RAU?

My best advice right now is to be patient, do everything the doctor tells you, do not exercise at all, rest, love yourself, pamper yourself. This is a marathon, not a race. Nothing with thyroid disease is a quick fix. It all takes time to get your thyroid levels back under control. There are a lot of great people on this site who are more than happy to help you.

Take care. I'm saying a prayer for you.

Best Regards,
Patti


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## ctob (Sep 20, 2011)

Thank you desertbloom. I really appreciate your reply. I think I was being ultra annoyed at how rude people can be and was really getting my blood boil when I am normally internalizing things. Saw doc today and she said to give myself more time and that I just need to rest. I went home and slept all day and all the heat from the insensitive people has subsided.

Doc said I am very sick and I must give myself more time before I get back into the swing of things. She also said that she will make certain I get in to see the endocrinologist next week because this cannot wait any longer. She is worried because I was suffering from thyrotoxicosis in her office and she missed it and realized over the weekend when lab results came in that I needed to be hospitalized. I do feel better but she thinks it can happen again very easily.

She is also trying to get to the bottom of why my liver enzymes are high. She said that is only caused by alcohol, medicine, or infection and I have never been much of a drinker or pill taker till now of course.

Each day I think I can join the human race and do my thing and then I feel like I am public enemy number one with my attitude that I wonder, where did that come from and keep having to say I'm sorry and any real exertion makes me want to sleep all day.

My broker is patient and wonderful and handling all critical matters for me at my work but I never want to put anyone in that position again. I seriously plan a change of life and phase out. I have been primary bread winner and must figure out how to let go and pay the bills. Doc said I'll write you a note so you don't have to work and I laughed because the work is 24/7 and people do not understand when you don't answer the phone at 7 at night to respond to a work matter, you are off work. People do not understand and everyone feels like a Realtor is to work anytime you call and who cares if you are sick. They call 4 to 6 times in a row and it doesn't stop unless I turn the ringer off and then my broker tells me my inbox is full she cant leave any messages and all I want to do is forget I have a business to tend to. I am checking messages at 9 oclock at night so people can leave more messages. I don't know how much more I can do this because it is making me raging inside.

Anyway I have no idea what I did with my lab reports but I do have some info that I had passed along to my doctor friend. He has been very good to email me and ask me how I am doing every day and not asking anything of me. I don't feel like I have anything to give right now. What I had sent was some numbers and also items that were flagged as high or low.

Sorry I can't display regular but perhaps this is something.

I was low on C02 and high on BUN, calcium and bili total, alk phos, ast, and alt.
My ASt was 412 and the range was 5-40.
My Alt was 516 and the range was 5-40.
I was high on monocytes and monocytes abs and lipase. 
Urinalysis, poc (U10)m.

The thyroid stimulatin hormone (TSH) results sow moderate POC urine bili, the urine ketones at less than 159
The POC blood was small, 
The POC protien was 30 
The free T3 was high and free T4 was high.

They also discovered some abdominal wall calcification indicating early atherosclerosis.

Everything else is normal for what was scanned or tested. Whatever I mentioned on results were the flagged items for being out of range for high or low.
Ranges were not listed for every item.

I am currently on .25 mg of xanax, 2 mg of imodium, 40 mg of protonix, 10 mg of inderal, 150 mg of propylthiouracil and 10 mg of ambien.

Alcohol and tylenol is being avoided but I am trying to stay away from foods with iodine and processed foods and am eating a lot of fruits that don't catch me bad feelins.

hopre any of this helps.


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## desrtbloom (May 23, 2010)

I agree you are very sick and if you start feeling your heart racing/bad palpatations and just overall feeling worse, please go to the ER. You could have a thyroid storm and it is very dangerous and can kill you, so much better to be safe than sorry.

It sounds like the drugs you are on is a start. Below is the Graves' Foundation website and they provide a lot of information that is beneficial so you can learn about your diagnosis. Once you see the endo you will most likely have a radiation update scan so that the endo can see how your thyroid is functioning (or not function). You might also have a ultrasound done of your thyroid. You could also have a fine needle biopsy.

www.ngdf.org

With respect to the feelings of rage, that is very common. Your thyroid function is essential to every single cell in your body. That is why you get soooooo many symptoms. You are experiencing an hormonal imbalance that is causing you to feel anxious, rageful, depressed, weepy, etc. I had no idea until my diagnosis how important thyroid function is to every cell of my body. So until your meds start working and your thyroid levels get in the normal ranges, you will most likely have a multitude of symptoms. I would literally wake up and just start sobbing. I would sob all day, all night and go to bed at night sobbing. It was exhausting.

I can so relate to how you feel with trying to hold down your job. It was extremely hard for me, but I finally had to wrap my head around the fact that I was extremely ill, that if I don't have my health I won't have anything and that it was time for me to focus on getting well and that was my "job" for the time being. I am totally Type A and hate to be out of control, so it was extremely hard for me to let go and focus all my energy on trying to get well.

So rest, rest and rest some more. Once you see the endo I think you'll feel better. I pray this endo is very patient and understanding and explains things thoroughly to you.

:hugs:

Best Regards,
Patti


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## webster2 (May 19, 2011)

Welcome to the forum. You have been through so much. It made me sad to read how much you have suffered.

This really hit home with me:
"Each day I think I can join the human race and do my thing and then I feel like I am public enemy number one with my attitude that I wonder, where did that come from and keep having to say I'm sorry and any real exertion makes me want to sleep all day."

I was convinced all of my symptoms were from menopause, and that I was going crazy. After receiving the Grave's diagnosis, it helped knowing there was a reason for all of the awful symptoms, and that I was not headed into lunacy. Graves rages are the absolute pits. I am very fortunate to still have a marriage. I had the remaining portion of my thyroid removed in July. The Graves symptoms have subsided. I still fear a rage but.... so far, so good...no Mrs. Hyde showing up.

Please monitor your symptoms, and let your SO know about thyroid storm. It is life threatening, and the worst feeling ever.

Wishing you the best, and hoping the endo will provide medical attention that will have you feeling better very soon.


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## Andros (Aug 26, 2009)

ctob said:


> Hi everyone. I have read several pages on these posts and I wanted to share my story, actually the beginning of my story because I have not had an entire week go by with this new diagnosis. I was extremely sick for almost 2 months. Initially I had severe uncontrollable diarrhea that even caused me embarrassment at untimely moments. Then the vomiting started and I could not keep anything down. I did not have any insurance so after two weeks of not getting better I saw an agent after another week and I had to wait another three weeks for it to be effective and then I had to wait another 9 days to see the doctor.
> 
> By this time I had lost 35 pounds and missed three works of work where I was glued to my bed or the toilet and most times I could not even make it to the toilet. When the nurse practitioner saw me on Friday she ordered up an ultrasound and some blood work and said she would call me on Monday with results. She thought it odd that my pulse was so high and you could see my heartbeat ticking up and down in my stomach. Well she never called me back still and by Tuesday I was wretching every hour and looking like a scarecrow. They told me to go to ER. Two hours later I was admitted and the hospitalist came and said your lab work showed very, very high levels and you have hyperthyroidism and I am pretty sure you have Grave's disease. This was confirmed the next day. Then he was telling me how I needed to have radioactive iodine treatment and I am still in a fog all confused.
> 
> ...


OMG!!! How horrible. What medicines are you on? You are in advanced stage and my experience suggests that I recommend surgery for you to take the thyroid out.

RAI might possibly not work the first time and you would have to have more plus you could have cancer cells and if you get surgery, the pathologist will check that.

I do understand as I almost died from untreated hyper/Graves'.

You need to know these symptoms in case. If anything like this happens, get to the ER quick.

Thyroid Storm
http://www.clivir.com/lessons/show/thyroid-storm-symptoms-causes-and-treatment.html

Also, this might help you understand some things......................

Graves', neuropsychiatric
http://www.ngdf.org/cms/modules/files/uploads/7699.PDF

God bless you and do know we will do all we can to help you!

When you feel like it (I know you are so ill right now), list your meds and what tests you have had w/ the results and the ranges.

Did they do RAIU (radioactive uptake scan?)


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## ctob (Sep 20, 2011)

Ok for some reason I have lost two long posts and I can't seem to send what I want to say. The meds and lab results were posted above and will restate here.

I was low on C02 and high on BUN, calcium and bili total, alk phos, ast, and alt.
My ASt was 412 and the range was 5-40.
My Alt was 516 and the range was 5-40.
I was high on monocytes and monocytes abs and lipase. 
Urinalysis, poc (U10)m.

The thyroid stimulatin hormone (TSH) results sow moderate POC urine bili, the urine ketones at less than 159
The POC blood was small, 
The POC protien was 30 
The free T3 was high and free T4 was high.

They also discovered some abdominal wall calcification indicating early atherosclerosis.

Everything else is normal for what was scanned or tested. Whatever I mentioned on results were the flagged items for being out of range for high or low.
Ranges were not listed for every item.

I am currently on .25 mg of xanax, 2 mg of imodium, 40 mg of protonix, 10 mg of inderal, 150 mg of propylthiouracil and 10 mg of ambien.

I must go into office tomorrow and deal with my business. I am starting to feel very sorry for my broker and will try to listen to my body. Problem with my business is I end up working 10 hours without eating because I had no time. I hope I can notice and take proper care.

You all have been so helpful. I feel like it is difficult for someone to understand when I look and sound better. Anyway I will check out all the links.

I am having a problem with waking at night, not knowing and falling down. It has happened 3 times now. Boyfriend showed me the knot on my head I didn't even know I had.

Have to see what is going on with the liver. The reasons why it would be damaged don't apply. I have been ordered to not use alcohol and tylenol nevertheless. I have not had a drink in 3 months and am a super lightweight so hope I don't have infection. Will see the saga continues.

I really appreciate you guys. I just wanted to say that I am putting a lot of emphasis on avoiding iodine food. My stomach really feels happy with that decision. The list of safe foods is short. Any recommendations on cookbooks that address diet for Grave's and it is medically accepted? I really don't feel like supporting someone who is trying to make a buck off of someone's disease but to inform in a way that truly helps.


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## ctob (Sep 20, 2011)

I just wanted to let you know that I researched the storm thing. I had gone to the doc that past Friday with those symptoms but she ordered lab tests and said will see what they say on Monday before she does anything. She told me as soon as they came in she realized that I needed to be hospitalized but for some reason never called me back. I was told when I called in on Tuesday morning by the front desk to get to ER immediately. I think they should have put me in the hospital on Friday! She has no idea how much I suffered waiting to hear back from her over the weekend.

She diagnosed me with thyrotoxicosis and elevated liver enzymes. I have to get new labs. Now she is worried it seems. Doesn't want to take any chances. I feel like she took a chance with my llife. It was a nurse practitioner and the doctor never saw me.

She said yesterday see I thought it was your thyroid. I thought what??? She said she didn't know best to get lab tests done before treating. She said go to hospital if you need to be hydrated. I said have been vomiting 5 plus times a day for two weeks and cant even keep saliva down and she said well i will call you on Monday and she never did call ever.

She said don't work. I will write you a note. How do you stop working when you are self-employed business doesn't stop and you dont have a boss to read the note. LOL. Oh dear. Based on what I read, if I had not gone to the hospital that day I could have died. It had been over 14 days without liquid or food! I would try to swallow a sip and it came right up. Odd thing is though, my temp was always below normal so I didn't understand that part.

I told the hospital I was told to get hydrated so I could feel better and they wisely said that makes no sense. You will only end up right back here.

I am playing it safe and won't let myself get like that again. Now that I have insurance I can see a doctor. A doctor won't see you in this town without insurance so I had to wait so many weeks to get my care.

Are nurse practitioners just as good as doctors? I hope not to offend anyone who might be one but I didn't really get the emergency treatment that I felt I should have had.

Im sure I will have all good news to share soon.


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