I’ve been meaning to write about this for weeks now. But I didn’t know where to start…
Back in the fall, I noticed my heartrate at rest was up, way up. It was 140 beats per minute at rest, which is what it should be if a person is running full out. I’ve had a heart rythym issue for about 15 years, so I went to my cardiologist. He said he thought my system had become used to my heart med. So he put me on a different heart med than I had been on.
But there was no change. So he put me on a different heart med. There was a little improvement, but not much. So he increased the dosage. Again, not much change.
Meanwhile I began to lose weight and I developed tremor..I was literally shaking. I was also having problems getting to sleep at night and was hot all the time. Harland and I engaged in a thermostat tug of war. I had difficulty concentrating, and was irritable. I mentioned these symptoms to the cardiologist’s nurse but the dr just kept targeting the heart rate issue.
I consulted Dr. Google and found I had all these symptoms of hyperthyroidism:
- Sudden weight loss, even when your appetite and the amount and type of food you eat remain the same or even increase
- Rapid heartbeat (tachycardia) — commonly more than 100 beats a minute — irregular heartbeat (arrhythmia) or pounding of your heart (palpitations)
- Increased appetite
- Nervousness, anxiety and irritability
- Tremor — usually a fine trembling in your hands and fingers
- Increased sensitivity to heat
- Changes in bowel patterns, especially more frequent bowel movements
- Fatigue, muscle weakness
- Difficulty sleeping
- Skin thinning
- Fine, brittle hair
Finally last month I’d had enough of my cardiologist treating me like a guinea pig with all the heart meds, and went to my primary care physician. I sat in his office, heart pounding away, hands shaking..a wreck. Fortunately, he didn’t skip a beat and suspected my thyroid right away. A blood test confirmed it the next day: Severe Hyperthyroidism. My PCP put me on a combo of heart meds to bring my heart rate down and lessen the other symptoms as well.
A week later I saw an endocrinologist. Several days later, I had an ultrasound on my thyroid to check for cancer. It was a little enlarged, but no growths. Then, a week later, I was scheduled for a radioactive iodine uptake test to see what the severity of my hyperthyroidism is. This test set for another week away.
A couple days before the test I called the endocrinologist’s nurse about my heart rate..it was back up again. I called again the next day. No return call.
That same day, last Thursday, I went to the hospital in Topeka to have the radioactive iodine test. That morning they gave me a capsule containing radioactive iodine in it. They did a baseline scan, then they asked me to come back in 6 hours. The thyroid absorbs iodine. How fast it absorbs the iodine indicates the severity of the thyroid issue. Six hours later, they did the scan again. My absorbtion rate was pretty high.
The next morning, Friday, they scanned me again – the result was the same. Then they injected me with more radioactive iodine, had me lay on a cat scan table, and took “pictures” of my thyroid. Mine showed up in the images like a 1000 watt bulb in a dark room. They said I was “severe” and that my thyroid issue was caused by Graves Disease, an autoimmune illness. I wanted to just go home and cry, but I headed to work anyway.
There are 2 treatment options for hyperthyroidism:
1. Meds that a person can take for only 2 years and may cause liver damage
2. I big whopping dose of radioactive iodine that kills part or all of the thyroid. Usually leads to the opposite problem – hypothyroidism – which requires drug treatment for the rest of a person’s life.
I didn’t hear back from my endocrinologist that day as to what treatment would be done or what to do about my rising heart rate. On Monday, I called again and finally got the nurse on the line. She said I could increase my heart med for my rising heart rate and then asked what kind of treatment I wanted to do for my thyroidism. What the – ???? Did I go to medical school? What do I know??
Between the symptoms and the delays in diagnosis and treatment, by now I felt whipped with no strength to argue. So I went ahead and chose the radioactive iodine treatment. The nurse said they would call me to schedule an appointment for the treatment. This was on Monday of last week. Tuesday went by without a call.
Then Wednesday. Thursday. Friday.
One night when I was having a partcularly hard time getting to sleep. I lay there thinking – and got really mad. It was about 2 am. What kind of doctor tells you that you have severe thyroidism and then ignores you for days and weeks at a time??? It’s been over a month now since I was diagnosed. When treatment is started, whatever treatment it is, it will take 6-8 weeks to see results because it will take that long for all the excess thyroid hormone to get out of my system. And while I’m waiting, there’s a chance of me having nifty little episode called a “Thyroid Storm”, where a person goes into cardiac arrest and dies. Yay.
I lay there in bed thinking, “I’ll show that doctor. I’ll die on him. Then I’ll have Harland sue his a** for malpractice. Ha ha, I’ll fix his red wagon.” A great plan except for the fact that I’m not ready to die yet.
Monday of this week I called my PCP and asked them to refer me to a new endocrinologist. I’m going to KU Med, the best hospital in this area. I want someone to take my problems seriously and promptly. And I want someone to recommend treatment and start it asap. The frustration and waiting, calls that go un-returned, the feeling that no one in the medical profession cares that I feel like crap and have felt like crap for months now…. All this has, at time, been more aggravating that the illness itself. I’m so tired of waiting to feel better.
Oh..and I had to cancel my surgery that was to improve our chances of starting a family. The surgery was to have taken place in Omaha today. I won’t be able to reschedule until my thyroid is under control.
And guess what? I’m still waiting. My records were transferred to KU Med on Monday, and I”m waiting to hear from them…. I’m so irritable and I don’t know how much of it is the thyroid issue and how must of it is aggravation with all the delays. I feel like I’ve been drinking pots of coffee all day and even have had a few panic attacks. . I’d like to have an adult sized temper tantrum…I could scream and cry with the best 3 year old.
Sigh…. So here I am…waiting….
Thanks for listening to my rambling. If you could say a prayer for me, that would be a wonderful thing.
Oh, Suzanne, I don’t blame you one bit for being upset. Good for you for changing doctors – sounds like the right place to start. It’s a little disheartening how much we do have to take charge of our own medical stuff but it can be very empowering too. Continuing to keep you in prayer for happy miraculous answers to everything!!
Oh my goodness, how awful! I can understand completely because 2 months ago I was diagnosed as having severe hypothyroidism. But my doctor got me started on medication right away. I know how you are feeling and can’t imagine having to wait so long. Do NOT take no for an answer. Keep calling every day if you have to. And you are allowed to have a temper tantrum. You deserve it.
I once had a medical issue that went undiagnosed/incorrectly diagnosed for over 3 years. You know, up to and including the infamous line they like to use particularly with women – “it’s all in your head”. Finally a nurse friend diagnosed me and told me to go in and insist on the correct test for confirmation. She said you may have to make a scene – they do not like to think you might have a clue about your own health status! So, I went in and ended up with a small insistence-scene. And refused to leave the office until said test was ordered. They got to the end of the day, ready to lock the door and there I still was. They threatened to call law enforcement – I approved! Yes, I would not mind having a legal witness that you are refusing to treat me – they backed off and subsequently ordered the test – to placate me. When they got the results, they called and told me to get in ASAP and they scheduled emergency surgery for the same day – Christmas Eve. Yeah – it was that serious. All this to say – do not back down. I believe you could also opt for Mayo’s – I’ve heard very good things about their ability to track down and treat in short order what others have meandered around for very long periods of time. Rural health care is indeed in crisis and I’m not sure where it will all end, but I do know being passive is not the correct answer. Squeaky wheel and all that! You and yours will be in my positive thoughts.
You poor thing! I could hear your frustration building throughout your post. I hope you get the treatment soon and everything works out favorably for you! I’d give you a hug if I could – since I can’t I’m sending positive thoughts and prayer in your direction. Hang in there girl ( and if it will help, have that tantrum!). Keep us posted.
I am sorry you are dealing with medical issues and doctors. When my father was in the hospital, a doctor yelled at my sister,”Will someone listen to me?”. She simply asked a question. Not only was he incompetent,but he was not a caring and kind human being. Dad survived cancer with the help of other doctors, an oncologist and surgeon who believe in prayer. Sending hugs and prayers from middle TN.
I’m angry for you(!!) and you’re on my prayer list!
Bless your heart. I am so sorry to hear of your illness and delays of having a baby. I’m praying for you guys.
I am so sorry to hear about your troubles. This must be very scary and frustrating. Good for you for changing doctors! Keep asking questions and demanding answers! And please know that you have many faithful readers who are thinking about you and sending you prayers and hugs.
Honey child, you go outside somewhere or out to the barn, or stop on a lonely road and pitch the biggest hissy fit you can imagine!! Scream, stomp your feet, cry, run in circles, beat something — whatever it takes to help release some of the tension and frustration that you have bottled up inside you. You DON’T have to act like a “grown up” ALL THE TIME!!
I agree that sometimes the frustration of waiting and not knowing is just as bad (or worse) than the issue you’re dealing with. I sure hope you get underway with treatment really soon. I’d give you a big hug if my arms would just reach that far. Imagine it anyway, okay?
I am so sorry to hear of your troubles Suzanne.
The reason for thyroid troubles in the first place is iodine deficiency. DON’T take radioactive anything…..take regular iodine. You can find some here. http://www.regenerativenutrition.com/Iodine—Lugols-Solution-p-149.asp
You need the 7% but you can not find 7% in the US. Until you get it use regular iodine for wounds by painting a patch on your skin. You will see it has disappeared after 24 hrs. This means you are deficient.
Next? Get out of modern medicine. They will kill you. My neighbor just died from lung disease (and hospice) from the heart medication he took for 13 years…it caused this. They admit that heart meds will destroy your lungs.
LEARN natural medicine if you want to extend your life. Suzanne on your current path you won’t make it very much loner. You CAN heal yourself instead of having modern medical “treat” your symptoms.
Start your learning here http://www.herballegacy.com/index.html
They will have the medicine you need.
After my 30 years of study Dr Christopher is my choice. I have his book School of Natural healing.
If you want to talk further you have my e-mail address.
Suzanne I’m so sorry to hear of your battle with frustrating medical professionals. Here in our area (SW Louisiana) we have some of the worst. It all comes down to the prevailing medical professional philosophy. We always go to the Houston Medical Center in Houston, TX, a three hour drive for us. They have the world’s best medical professionals there and their prevailing philosophy is to care for the patient NOW and solve their problem ASAP, if possible. It is more than worth the drive for anyone in our area! We encounter people from all over the country and all over the world every time we go there. My niece is an RN in one of the hospitals there and she has become our go-to person for medical referrals. She always can find us the best of the best doctors. I hope you get help soon and that you find doctors willing to tackle your problem and find a speedy solution. If not, how about a trip to Houston, Texas?
Suzanne, anytime you need a friend to talk to, I’m available. I hope and pray everything turns around for you and you get your health in order and then possible have a baby. Take care of yourself and let me know if you need anything.
Oh wow! I would be totally stark raving mad by now…I am not a patient patient…….you have my total support and if you need me to “got your six boss”….I would show up fast. Keep fighting for the correct treatment.
Suzanne, dear friend, after reading all of this and the lovely responses you’ve gotten so far I am in tears. Tears of frustration for you and Harland, tears of empathy that my friend is suffering, and tears of gladness for the wonderful support you have from your blog readers.
I will be praying and that is not an empty statement, it will be done! Love you!
Prayers and hugs for you and Harland, Suzanne; so sorry for your medical issues and the struggle that you are going through in trying to correctly treat them.
Sending hugs, prayers, strength and courage. Thanks to Harland for being by your side.
Throw that temper tantrum!!!!!
I, as someone else has mentioned, have gone the way with natural medicine (27 years). Our bodies are a powerful tool and can heal itself, with the help of natural supplements. Read about it, with an open mind. Follow your heart, dear one.
Again, THROW A TEMPER TANTRUM!!! This stress can escalate your health issues.
I’m so sorry you have to go through this, but maybe the new medical people will be good and get you sorted out once you see them.
Suzanne, I’m sorry to hear that you’re having this medical issue and your doctors are not being supportive. Having been through the thyroid cancer rodeo myself, I know that having the support of my caring physicians was the most important thing in a very scary and life changing experience. Luckily, it sounds as though you have dodged the Big C, but there are side effects from the radioactive iodine that are permanent. As top notch as my medical care was, there were some things that were not discussed. I don’t know if you are still in the information gathering stage and want more input or are on overload and just want to hide from the advice-offerers. Believe me, I can relate. You have my email if there is anything from my own experience that you would like me to share that you might find helpful. In any case, I’m sending you positive thoughts and hope that your family and co-workers continue to be as thoughtful and generous of spirit as you need them to be.
Many Prayers Suzanne!
I was so disappointed to read your “baby surgery” had to be postponed. I was watching your site daily for news in that department.
Your health is the most important thing right now and I’m with the other posters who encourage a temper tantrum (it will be good to release all that pent up frustration). I personally use chocolate but am not sure that is allowed with your current health issues… Anyway, stay informed of your options. I am shocked to hear how you seem to be placed on the back burner with the medical field. Get yourself to a good medical facility.
I have grown to love your blog and feel I am checking in with a friend when I read about you.
You are in my prayers.
I’m not so keen on your going off on a temper tantrum. This may send your heart rate to high.
Just stay calm, and please look into natural “cures”. Again this will treat the problem…not the symptom.
You may have had this thyroid issue for the past 15 years because one symptom is heart palpitations or irregular rhythm…..so this shows how the symptom got treated instead of the problem.
You have every right to throw a big temper tantrum, Suzanne!!! I’m praying for you.
Suzanne might have the right but this is not about emotion. It’s about her health. Her heart needs to be quiet….
I’m sorry you are going thru all this. I’ve been hypothyroid for 18 years and it’s a roller coaster ride of getting the right dosage to control my symptoms. I know you must be frustrated about putting off your “baby” surgery , but this may be a blessing in disguise for I know first hand the effects an unregulated thyroid has on a developing fetus. I was diagnosed with thyroiditis with a goiter the same week I found out I was pregnant with my 2nd child. I trusted my family doctor who would not put me on meds until I passed the 4th month of pregnancy ,wished I had known then what I know now. Lack of proper thyroid regulation during the first few months of gestation can lead to all kinds of issues for the child. Low IQ,stunted growth, small motor skill problems ,learning disabilities,autism,etc. My daughter has anxiety and learning problems and has always been less mature than her peers,has trouble in social situations and at one time in her childhood was told she had an autism spectrum disorder/pervasive development disorder.She is 18 now and I suspect she is headed for hypothyroidism herself,showing all the classic signs of it.She’s been tested,but they say it’s negative. We have no health insurance currently,so I can’t do much to pursue it further with an endocrinologist. Most important for you right now is to get healthy.
Normally I don’t comment on blogs. And I don’t have time to read responses. But you are relaying on MD’s way too much. I have two boys with Graves Disease. Neither of those are an option I would even consider. I took them to a ND that focuses on Thyroid. After seeing MD after MD for four years and having over 50k in medical bills you soon realize they don’t care. My son’s MD said kids don’t have thyroid issues. HA! So this ND ran the tests, he know the numbers and what to look for, he know what herbs my boys should have. He even had a tincture made because my boys were small. Both boys are currently in remission and their numbers look great. We take them in yearly to run the numbers. Of course we may have issues down the road, but for the past 4 years they have been doing good. So I highly suggest getting a second opinion from an ND before doing something drastic to your body.
That’s right Mercie. Very good advice.
Suzanne. Here is a place in Lawrence, KS
I hope you will go.
Suzanne, you are in my prayers. I’m so sorry to hear of your health dilemma. I’ve having some issues right now so I’ve got a little storm brewing here. Dental pain, finally getting looked at on Thurs, with specialist. Hopefully treatment a few hours later. Today I came home early from work from not feeling well. But then a phone call for me! Another problem with my mom, in a nursing home, came up. Too late to call anybody. I was so upset that I really let the onion have it tonight while I was cutting it for the soup for dinner!!!!! Sigh! Just believing God is gonna be with us whatever happens. I saw a reader board at a church today that read “God is the safe harbor in life’s storms.” Exactly true! Hugs and know you are loved, my friend. No dying, please as I can’t shed any more tears right now! Thanks for sharing!
I will be praying for you and good health! Hang in there, you are such a strong woman and have such a good husband, I am sure you will be just fine. God bless you.
Dear Suzanne, you are in my prayers! I am very concerned for you, as I know all of these other friends are. I pray that the doctors will get on the ball quickly, for your sake. You deserve it.
Hi Suzanne. I have followed your blog from the other side of the world for some years now and have to say it is a remarkable effort. You write so well, and so informatively and with a heart that lets me know so much about how it is in Kansas. I have a blog and follow blogs and yours is just outstanding.
I have missed it in the last few months and thought that you had moved on to other things as most do. But you should do what is best.
Such a story about your illness and so brave for you to share it.
I hope though that it goes well for you in the long run.
I am not a religous man but I pray for you.
Suzanne, this is just awful! To have all these health issues, making you feel terrible, and then have to deal with such unprofessionalism with your health care providers. No wonder you’re at the end of your rope.
And I’m sad that you’ve had to postpone your surgery…..
I will add you to my prayers for all of this to be addressed soon, so you can be healthy again!
Please keep us posted; we’re all in your corner, you know.
As you can see from all the above comments, we care about you — even for those of us who haven’t met you. We have appreciated your posts about life on the farm, enjoyed the wit you communicate with, and are happy to return the difference you have made in our lives by supporting you in this moment in your life. Praying for peace in your spirit that can only be given by God, our Healer.
Suzanne, I am holding you up to the Universal Healing Power, no advice here, just warm hugs and a firm belief that one way or another you will be all right.
Suzanne, Having had my thyroid removed in the early 1990’s, I can sympathize a bit with what you are experiencing. Sending up good thoughts and prayers for a positive outcome.
You poor thing. I can’t help but wonder in years gone by how many women with this condition ended up admitted to insane asylums because it felt like a nervous breakdown. Luckily you will have other options and lots of people sending prayers.
Suzanne, I am keeping you in my prayers!
Sending you light and love and healing thoughts, Suzanne. I must say, I heartily agree with the commenters who have recommended that you see a Naturopathic Doctor ASAP. Please, please consider this strongly before undergoing further procedures. ND’s will take a full one hour or more to get a full history from you and start working with you for places to begin to bring balance into your system. Everything is inter-dependent in the body and it takes work, but is so worth the effort to holistically approach healing for yourself. Do take care.
Wow, Suzanne, it all sounds REALLY frustrating!!!!!!
I’m sure KU Med will have someone really good there!
The thing about a teaching hospital is that you may be seen by a team of people, including med students, but luckily it is more than one person! You are less likely to get forgotten, and there is collaborative input on your condition. Can you tell I used to work there?
Unfortunately, it is long enough ago, I no longer know the doctors there, and can’t give you a recommendation.
My sister’s daughter had thyroid cancer at 15 years old. They kind of got the runaround about her treatment.
Anyway, long story short, they ended up going to Mayo clinic in Rochester.
Each time they have been up there for treatment, and then yearly followups, Nancy tells me how impressed she is with their system of
testing and getting back with the patient right away. She says they are set up that way because most of their patients are from out of town.
She says they have a really efficient system.
Also, their HMO wasn’t going to cover treatment there (out of system), but eventually did. Anyway, just a thought.
I wish for your situation to be resolved quickly!
God bless you Suzanne and Harland too. I am keeping you in my prayers.
I’m sorry to hear about your diagnosis of Grave’s disease. I also have Grave’s disease, a mild case they say. I was so scared when I was diagnosed, and I didn’t know how to make the decisions that were right for me. I thought doctors knew better than I did what was right for me. But you really need to find a doctor that’s paying attention to what you’re saying. Make more noise or find another doc. My first two doctors put me on high doses of methimazole, which made me really sick, so they would increase the dose, and I kept feeling worse and worse. I stuck with each one for three months; if they couldn’t make me feel better by then, I looked for another doc. Third time was the charm for me; I found a doc who was willing to put me on a lower dose, and then cut that to a bare minimum when my symptoms abated. My TSH is usually still below normal, but my symptoms are mostly gone (I still have insomnia sometimes) and everything else is in ‘normal’ ranges. I actually went into remission once, where I didn’t need any meds for about two years. Right now my tests are indicating that I’m heading towards remission again. I did a lot of research when I was diagnosed, and never heard that remission was possible. Just heard all the scary stuff. I hope you find the path that works best for you.