# New here... Grave's suggested, but not diagnosed.



## Nexangelus (Feb 19, 2011)

Hello! I've been poking around these boards for the past few days after excitingly symptoms similar to those described on this site. As the title stated, I've had something resembling a diagnosis - perhaps more a suggestion, given by an Opthamologist that Graves/Thyroid problems could be causing my difficulties focusing my eyes, the aches behind my eyes, the redness and sensitivity to light. People close to me have also commented that I have more of a vacant, lifeless look in my eyes and that I appear to be staring, even when I'm not. However, I did not have any bulging and the pressure reading behind my eyes was golden. I had no idea what Grave's was at that time, so I was unable to ask if it was possible to have eye problems without the stereotypical "bulge".

Now that I think back, I've been having worsening symptoms that go back to about August of '10. At the time, the mild symptoms were not at all surprising, given that I was working regular double a pretty stressful and physically exhausting job. It started out with mostly fatigue/unrefreshing sleep, muscle weakness/shakiness, frequent bowel movements and odd visual issues best described as "difficulty focusing eyes" alongside a strained feeling and constant red (not horribly bloodshot, but noticeable) eyes - all of which are generally pretty uncommon at 18.

As the symptoms progressively got worse, I wasn't able to work as much and then, I had trouble working at all. For the sake of my health, I quit my job and moved back in with my family in an attempt to create a temporary environment of zero stress, which I thought would help me bounce back.

Unfortunately, that wasn't the case. I began feeling even worse, and new symptoms developed and are still very much affecting me, even months later. The fatigue is still there, although "fatigue" doesn't quite describe the near debilitating omnipresent exhaustion thats unaffected by my amount of sleep. I've developed a pretty serious (especially recently) case of shortness of breath, which can leave me winded and struggling for air after something as trivial as climbing a flight of stairs or vacuuming. Being 18 and being cigarette free for close to a year, this is really alarming. Perhaps unrelated, but I have noticed my lower neck is slightly protruding and tender to the touch and often feels "full" and is very easily irritated by scarves - even wearing loosely, I feel almost choked. As if the exhaustion and shortness of breath didn't make exercising difficult enough, the muscle weakness/shakiness on mild exertion will make it impossible. This cocktail of symptoms honestly makes me feel like I'm 90 - and I'm beginning to look more the part... I'm now down to 126 pounds at 6'2 (Male, by the way) despite my voracious appetite. Without going into too much graphic detail, I suspect this could be from my numerous, unexplainable visits to the lavatory every day.

I'm quite worried by those symptoms, and am definitely having a hard time leading any sort of a normal life with them. My latest symptom is definitely causing me the most concern - an abnormally high pulse and systolic reading. After taking it the past few weeks, my resting pulse averages out to 120 and my blood pressure at 115/65-70. As stated, I still have a very small amount of stress in my life, certainly not enough to constitute these numbers. I've had low blood pressure my whole life, in fact, the summer following the onset of these symptoms I averaged 55-60 as a resting pulse and the blood pressure was typically 80/60.

Now, here's the kicker... I rushed over to the doctors office early morning about a week ago, noting that I was having a pretty good day, and the fatigue was at a minimum. I got a completely normal, healthy reading! The pulse was at 70, blood pressure was something like 95/65. After that reading, I experienced every concerned patient's favorite (not) path: "It could be in your head", "Perhaps a result of anxiety", or "You're depressed". After denying all of those, and getting a 20 minute lecture about how I could have an eating disorder and need to force-feed myself (She didn't pay much attention when I told her about the ravenous appetite) , she agreed to do blood work - Chemistry panels, general thyroid test, blood sugar... Of course, all normal.

Even later that day my pulse/bp had skyrocketed (and yes, I've used many different machines with identical results) and continues to beat like a war drum. I can't say I feel much from it - maybe a bit "on edge" or a tad irritable at times, but there are some occasions I'm very aware of my heartbeat, if that makes any sense. Almost like it's beating too loud and can be felt in my body.

You're a trooper for reading this far! I just had a few closing questions pertaining to thyroid issues.

1) Any explanations for the normal bp/pulse that one morning? Assuming it is thyroid-related, could that even be possible? I didn't feel great that morning, but I did have a drop more spunk and a dash more energy. Definitely odd, but more frustrating, given the price of doctor visits!

2) I'm well aware General Practitioners are not experts in dealing with thyroids, but I figured the test might say something. I have yet to get the official numbers or name of the test, just a voicemail telling me it came back normal. I've read that there are multiple tests that could possibly pinpoint any thyroid problems. Would anyone be so kind as to list the ones that may be applicable to my situation?

3) Could anyone recommended foods or possible supplements that would be beneficial if I did in fact have this problem? I've always had a healthy diet - low in red meat, average amounts of fish and chicken, easily topping the recommended daily intake of veggies and water. I've since added a few more calories, but refuse to go near fast food, soda pop, candy potato chips. I've been gluten free for about 3 weeks now due to a family history, but have noticed no change in bowel movements.

4) Lastly, I was wondering about exercise. I've never been into sports or intense muscle conditioning, but I've always gotten a moderate amount of activity in. Until things got as bad as they currently are, I was going to the gym on average twice a week, walking a few miles every day and hiking whenever possible. Given my muscle frailty, breathing issues and obscene pulse, is exercising safe? I'm aware that's more of a question for my doctor and I have every intention of asking once I see my new doctor - but unfortunately that won't be for a few weeks. Should I be pushing myself when I feel so lousy? I've been walking about a mile daily and even that seems to take it out of me. My family thinks more fitness would benefit me, but it's just so damn hard to suffer through.

Thank you for taking the time to read this absurdly long post and for any insight you may have to offer. I'm hoping I'm finally on the right path towards feeling better - as many of you are. I'm praying that everyone has a speedy recovery and also that I'm granted even half of the amount of strength and determination conveyed in the posts on this forum from it's various members.

Wishing you all a wonderful evening and an enjoyable weekend! Look forward to hearing from you. 

Jeremy

Edit: In response to the signature at the bottom of my post, I thought I should make it clear that I am certainly not asking for a diagnosis, simply advice on testing and healthy living IF I have a thyroid problem. Never hurts to have a second opinion or some reassurance that you're on the right path and not totally bonkers before heading to the doctor's office - especially without health insurance!


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## lavender (Jul 13, 2010)

yes, thyroid can cause your heart symptoms, and I can totally relate because I had symptoms for months, and when I went into my doctor's office, my heart rate was normal. Actually for years, I had symptoms at home that were never present at the doctor's office. And yes, I was treated like a hypochondriac.

Your symptoms sound like Graves Disease, but that does not mean that something else isn't going on. Having a health care provider who validates your experience is crucial.

Here are the tests you need to have done to diagnose a thyroid problem:
Bloodwork: TSH, Free T3, Free T4, TSI, TPO, and Anti-thyroglobulin. 
RAIU (Radioactive iodine uptake and scan of your thyroid) should also be done. However, I doubt a doc would do that without abnormal blood tests or doing an exam and finding a goitre (lump or enlargement of your thyroid) in your neck.

as far as foods, I have seen people recommend eating a lot of goitrogens to suppress your thyroid. You can google "goitrogen." They include certain veggies such as broccoli and kale. But, with symptoms as bad as yours, you will need medication. Trying to treat Graves alternatively is dangerous because of what Graves does to your heart. And I would wait until after bloodwork to start changing your diet as you don't want to suppress something your doctor needs to see for a diagnosis!

It sounds to me like exercise is not safe for you right now. Aside from how difficult it is, you could be putting your heart in jeopardy. I know it's hard to lay around as a young person, but you will have many years to exercise once this is treated.

I have posted a link, if you scroll down, you will see link to an article "Tapazole and Propylthiouracil in Graves' Disease" which goes over the different treatment options for Graves Disease. Keep in mind that your eyes will need to be treated separately.
http://www.ngdf.org/

Lastly, I would go to the ER when your pulse is over 100 (especially if it is at 120-and don't try to drive yourself), tell the docs about the recent Graves diagnosis from the opthamologist, and ask them to do thyroid labs. It's pretty hard for a family doc to ignore hospital records that document your experience, and it may save your life. I know ER visits can be expensive, but that's what HCAP is for. HCAP is assistance to help pay hospital bills for low income individuals. Call the hospital and tell them you need assistance when you get the bill.


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## Nexangelus (Feb 19, 2011)

Thanks for the input, Lavender! Perhaps my wording was a bit iffy... But the ophthalmologist didn't officially diagnose me. He suggested that the eye and physical symptoms _could_ be caused by Grave's disease, but stated he was not adept in dealing with cases of grave's disease. So it was more of a "Seems like..." than a "You have..." type of deal. Either way, it makes a hell of a lot of sense to me, and I fit the criteria pretty well.

That Hypochondriac treatment is dreadful, having a doctor repeatedly tell you that your symptoms are a result of depression which you don't have and writes off the weight loss as "not eating enough" is maddening. I wanted to slap her when she would remain quiet and give me a "Yeah, sure..." look when I told her I ate like a horse multiple times. Also didn't help that my high pulse was on break when she checked it. Of all times to feel okay....

Additionally, I did mention the minor swelling/protrusion in the neck as well as the discomfort, but I feel she was far beyond the point of listening, and said it was because I was skinny after a mere glance.

I will write down those tests and be sure to request them from the new doctor. I'm assuming I'm correct in figuring that the basic thyroid test is not all-encompassing and can overlook a possible thyroid problem? I'm hoping they're not staggeringly expensive... The basic thyroid panel was reasonable.

I will definitely make an effort to eat more broccoli and kale. I enjoy both of them - actually grew both over the summer. Look forward to having an excuse to splurge at the grocery store and try some new recipes. 

I figured exercise wouldn't be the best of options given my recent heart issues. I thought it may help with my energy level and perhaps lift the fog brought on by exhaustion that I've been soldiering through.

Now, I'm getting conflicting answers on what a "normal" pulse rate would be. It has definitely shot up, doubled actually... But is it at an unsafe level? I thought being underweight would cause a slower pulse, making the averages inapplicable.

The ER doesn't raise financial concerns - I have insurance, but it's an HMO, meaning they'll cover emergencies and medication, but not doctor's office visits. If at all possible, I'd rather avoid it though... I've filed quite a few "emergency" claims lately and would rather not create problems.

I'm also hearing different things through reading and advice regarding the exhaustion (Fatigue is too much of an understatement). Is it possible to be completely drained when your body is supposed to be in overdrive? What were your symptoms, if I'm not delving into something too personal.

Also, I'm wondering if frequent urination could tie into a thyroid issue. Goes along with the whole "body working too hard/fast" theme. I seem to be constantly thirsty, and seem to visit the little boy's room very shortly after drinking anything. The urination and bowel issues have really made it so my lavatory is the most frequently visited room in the house. Phew, all this is frustrating.

Thank you so much for the insight and fantastic advice, I really appreciate it! I don't feel as crazy after reading what you wrote and definitely feel more hopeful about being able to overcome whatever this damn thing is.


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## lavender (Jul 13, 2010)

I had crazy auto-immune issues that no one could diagnose for years. Fatigue. Chronic Flu. Muscles Aches that were debilitating. Low grade fever. I was told I had depression, chronic fatigue syndrome, fibromyalgia, the flu (for months at a time), anxiety, that I just felt my heart beating unusually, but nothing was really happening.

About 16 months ago, I had my cholesterol tested, and it was high for the first time in my life despite a low fat diet.

Last Winter, I started having heart palpitations mostly at night. I had a ton of energy for a while and was up all night unable to sleep. I would have these bursts of energy where I was talking or doing things really fast, people would accuse me of drinking too much caffeine when I had not had any for months. I found I was easily angered and flying off the handle in a way that was disturbing to me, but that I felt I had no way to control. My menstrual cycles practically stopped. My hair started turning white. I was hungry and eating enormous amounts of food without gaining weight. I was having hard time writing and my penmanship got bad because I could not control my hands.

The heart palpitations got worse. I thought I was having panic attacks. I could not sleep

Then, I got sick. No energy, muscle weakness, could no longer walk up a flight of stairs. Abdominal pains. Chronic loose stool. My skin itched, thought I was having an allergic reaction to meds. Developed strep throat. Dizzy. Couldn't remember things or participate in a conversation. Was not able to sit up in my doctor's office. Thirsty. Hot. Low grade fever. Lost 15 pounds in about a week. Anemic. Heart rate went up. I was exhausted, but I couldn't sleep. Was completely out of touch with how sick I was. My memory of this time period is really blurry.

Things progressed. I was so sick and weak that I could not get up to prepare myself anything to eat. I was barely able to get a glass of water then I would not have the energy to pick up the glass to drink it. My skin got so sensitive to pain that my clothing hurt, even the sheets on my bed were painful. I developed welts from anything that was in any way constrictive, like elastic or a waist band. I was unable to sleep at all because of the pounding in my chest. I developed chest pain and was having difficulty breathing.

That's when I got admitted to the hospital. High BP. Heart rate between 100-140. I was extremely pale and looked grey. I had a pretty severe tremor in my hands. I even had to open a window in the hospital because the room felt burning hot. I was severely dehydrated, and my liver levels were elevated. My thyroid levels were over 4x what they should have been. I started on meds to slow down my thyroid and my heart.

I had very little memory for weeks. My moods were up and down and all over the place. I was so hot, I kept the AC at 60 all summer. I was extremely sensitive to light. My eyes were dry and itched terribly like they had sand in them. My eyelids were unable to block out any light. I would shut my eyes, turn out the lights, close the curtains, and it was still as if the street lamps were blazing in my eyes. I had to sleep with a thick black mask over my face. I could not read because my eyes could not focus and because I could not understand anything. There was a thunderstorm and with every clap of lightening, I thought my heart would burst it was pounding so hard. I had this sense of not being in reality for weeks, like I was floating through the world.

My Graves was very progressed, I was misdiagnosed and undertreated for way too long. I was in my doctor's office 5 times in the month before I was hospitalized. My doctor jeopardized my life because she dismissed my symptoms and thought I was a hypochondriac when I asked her to do bloodwork. I trusted her because she was the doctor, and because I was too sick to know how sick I was. I thought I was being a good patient by sitting back and letter her figure everything out and because she got irritated if I questioned her judgment.

This should not have to happen to anyone. I am not a doctor, but everything you mention sounds like hyperthyroid to me. If your heart rate is over 100, I would go to the ER. Even if it's not thyroid, it could save your life.


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## runnergirl (Feb 6, 2011)

I am a runner and understand your concerns about exercise. I have gotten different opinions regarding my case so I do very light exercise while watching my heart rate. If you are tired don't do it. The long term consequences are not worth it. I am very new to this experience as well. I was diagnosed with Graves. I have felt very tired with mine. I know some people can't sleep. I was feeling tired no matter what. So I think you feeling that could be considered a symptom. With my dr...I had spoken to people at work about my symptoms. Luckily, someone has had this same experience. They told me, "Tell your dr. to check your thyroid!" So, that's what I did. She did an ultrasound and when those came back she ordered the RAIU. 
Wednesday I did an RAI. I want this over quick and that was the best road for me to take. I feel lucky to have had an answer right away. I know some people wait a long time. Do your research and ask questions. From what everyone tells me, there is a light at the end!!! It may be hard to believe right now, but there is!


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## Andros (Aug 26, 2009)

Nexangelus said:


> Hello! I've been poking around these boards for the past few days after excitingly symptoms similar to those described on this site. As the title stated, I've had something resembling a diagnosis - perhaps more a suggestion, given by an Opthamologist that Graves/Thyroid problems could be causing my difficulties focusing my eyes, the aches behind my eyes, the redness and sensitivity to light. People close to me have also commented that I have more of a vacant, lifeless look in my eyes and that I appear to be staring, even when I'm not. However, I did not have any bulging and the pressure reading behind my eyes was golden. I had no idea what Grave's was at that time, so I was unable to ask if it was possible to have eye problems without the stereotypical "bulge".
> 
> Now that I think back, I've been having worsening symptoms that go back to about August of '10. At the time, the mild symptoms were not at all surprising, given that I was working regular double a pretty stressful and physically exhausting job. It started out with mostly fatigue/unrefreshing sleep, muscle weakness/shakiness, frequent bowel movements and odd visual issues best described as "difficulty focusing eyes" alongside a strained feeling and constant red (not horribly bloodshot, but noticeable) eyes - all of which are generally pretty uncommon at 18.
> 
> ...


Jeremy!! So nice of you to join our board! If it walks like a duck, talks like a duck......................well; you know the rest!!

I advise you to get TSI lab test. There are other tests that would be helpful but since you have no insurance, we will wing it.

You should have no TSI and if you do, that means hyperthyroid. Easy enough; Yes?

TSI
Normally, there is no TSI in the blood. If TSI is found in the blood, this indicates that the thyroid stimulating immunoglobulin is the cause of the of a person's hyperthyroidism. 
http://www.medicineonline.com/topics/t/2/Thyroid-Stimulating-Immunoglobulin/TSI.html

You are experiencing muscle myopathy from hyperthyroid it appears. I had the same; I eventually could not breathe well because of myopathy of the muscles surrounding the lungs.
Myopathy from hyper.
http://www.medicalonly.com/2007/07/27/thyrotoxicmyopathy_hyperthyroidism

Exercise is absolutely contraindicated at this time. It could cause a heart-attack, a stroke or worse.

Here are symptoms of a thyroid storm (thyrotoxicosis) just so you can be familiar with this.....
Thyroid Storm Symptoms
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001437

Because of the financial constraints (I and hubby have them also), just get the 
TSI first. Then we can take it from there. Depending on the results, we will help you figure out a game plan for all of this.

Do stick w/ your ophthalmologist. "If" you do have Graves' and it sure sounds like it, the eyes have to be treated independent of the thyroid.

Glad you are going gluten-free. So many of us w/Graves can no longer process glutens properly. That aside from other problems such as IBS/Celiac causes weight gain.

It would be good to get on a beta-blocker after you get your TSI lab test. You can see if there is a Healthcheck USA in your area. You can just walk in for labs.


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## Nexangelus (Feb 19, 2011)

Thank you for all the replies. I really appreciate the kind words, advice and personal experience. Sounds like you've all been have had a rough time with this and I certainly hope you're beginning to feel more like yourselves!

~Lavender: You poor thing, it sounds like you've had a nightmarish time dealing with all this! I can only imagine how hard that was on you. One thing that really struck home was your bit about the increased energy. I also have periods like that. They occur every few days, only at night. My symptoms don't go away, but I have a spike of energy, general feelings of well-being and a noticeable boost in my sociability and how much I talk. I've also been accused of over-consuming caffeine or being hopped up on something. I generally have trouble sleeping these nights - partially due to the energy increase but more so to stay up later and enjoy feeling good for a change. Care to share more about how it was for you?

Today definitely was not the easiest day for me in terms of symptoms, although I do feel a lot of progress was made towards getting well. My psychiatrist is FINALLY off his nonsensical belief that my symptoms are the result of medication (which I was recently put on to combat these symptoms) and believes there's a genuine physical problem going on here, especially after taking my pulse at 122. He was supportive before, but I believe he had his reservations about it not being caused by anxiety. He thought additional thyroid testing was my best bet, and gave me a few numbers of doctors. He also said that exercising is dangerous with a pulse so high, and said I needed to be careful with even light exercise.

Of course, even just a ride to the psychiatrist's office and a quick stop at the grocery store has completely burnt up my minuscule supply of energy and left my muscles aching. I miss the days when I didn't have to nap after 2-3 hours of being slightly productive. I feel so old....

Thanks for reading and sharing with me! How is everyone else holding up today?


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## lavender (Jul 13, 2010)

I know it must be a huge relief to have a doctor finally validate what you are going through. I hope one of the doctor referrals works out. You may find that your thyroid has a lot to do with your mental health symptoms. Anxiety and rage are pretty common in hyperthyroids. I know there was a period where I felt bi-polar, and when I tried to describe what Graves felt like to a friend who is a psychiatric nurse practitioner, 
she suggested bipolar meds. Being hypothyroid caused me to feel very depressed. Straightening out my thyroid issues has really helped with my moods. I am pretty even keeled and in touch with my emotions without any psychotropic meds today.

It's strange to hear someone else validate how bad it really was. I don't often try to go back through all my symptoms, and I was really sick. I think knowing how far gone I was has helped me to appreciate life more now. I see every day as a gift and feel humbled by the knowledge that tomorrow is not a given. It has also inspired me to be more assertive with my doctors and push for a better quality of life rather than just accept feeling miserable because there is nothing they will do to help me. I trust my own intuitions more now, and know how important it is to have a health care provider who will listen to them and validate my experience.

Before I got really sick, I had a lot more energy. I was surprised that I was making it through a winter without one of my usual bouts of "flu" (which I now suspect were thyroid related). I was also feeling well enough to finally apply and get into graduate school after talking about it for years. I was really excited about my life. I was having a hard time sleeping and would stay up late into the evening, but still feel pretty ok. The heart palpitations were a bit worrisome, but I had them checked out by my doctor, she did an EKG, which showed a slight abnormality that she said was harmless and had been there before. So, I tried my best to ignore them (which I think is part of why things got so bad).

It wasn't until things progressed that my fatigue started increasing, and then it all hit in one week's time. I had been feeling a bit under the weather all week, and planned on getting some extra sleep and pampering myself over the weekend. I went out with my friends on Friday night and felt really good. Went to bed, and it was like I didn't wake up for weeks. I might have made it into work for a couple half days the next week, but I could barely function. It just knocked me down so hard and so fast I could not see it coming.


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## Andros (Aug 26, 2009)

Nexangelus said:


> Thank you for all the replies. I really appreciate the kind words, advice and personal experience. Sounds like you've all been have had a rough time with this and I certainly hope you're beginning to feel more like yourselves!
> 
> ~Lavender: You poor thing, it sounds like you've had a nightmarish time dealing with all this! I can only imagine how hard that was on you. One thing that really struck home was your bit about the increased energy. I also have periods like that. They occur every few days, only at night. My symptoms don't go away, but I have a spike of energy, general feelings of well-being and a noticeable boost in my sociability and how much I talk. I've also been accused of over-consuming caffeine or being hopped up on something. I generally have trouble sleeping these nights - partially due to the energy increase but more so to stay up later and enjoy feeling good for a change. Care to share more about how it was for you?
> 
> ...


Your psychiatrist should be a huge help to you. They are firstly medically trained so I am glad that he is on top of this.

Yeah............we all know about the accusations and speculations by others. Quite frankly, I have a whole new set of friends (and relatives) now by my choice. I don't need anybody in my life who is not supportive of me.










And yes; no heavy exercise. Light walking maybe but not much more! This too will pass; you will recover and resume normal life-style once you get diagnosed and treated.


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## tenajay (Feb 25, 2011)

Jeremy
I had the same experience - trouble with my eyes led to the Graves Disease diagnois. I would like to give you a heads up on this issue. If you are having problems with your eyes i.e. Graves Eye Disease, and you also have Graves Disease start now educating yourself on the effects that RAI (radioactive iodine) treatment can have on your Graves Eye Disease. I wish that I had done that, instead I just went along with what my doctor recommended. It was not a good choice for me. After RAI ablation of the thyroid, my eye condition worsened. My eyes bulged very noticeably and caused me much discomfort. I eventually had to have orbital decompression surgery on both eyes, as well as, surgery to correct retracted eyelids. Orbital decompression surgery is not a fun route to take and if you can keep yourself from going down that path please do, even if that means surgically removing your thyroid.


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