[rosethrivedeep]

#1059042

I was diagnosed with Grave’s Feb 2011 I had been experiencing symptoms for years. It was not until years after having my first child in 08 that the symptoms were examined more closely. After being diagnosed I began doing my own research and asking questions.

Thinking back to when I was in highschool I played sports and was very energetic but I rememebr when I lost almost 30 pounds in 2-3 months which was attributed to me working out so much. I also recall having nervous energy and eyes that always watered,hands that shook when serving a volleyball which I attributed to nerves and just a sense of moving too fast. I had insomnia and hardly slept and was hungry all the time. Fast forward some years later and in college finding out I am pregnant and having a healthy baby.Now trying to recover from giving birth.I began having heart racing,being hot all the time, shakiness,balance issues,headaches,nervous energy and weight loss despite a growing appetite.
It took 2 years and switching doctors before my doctor would take me serious and not try and say it could be stress or post partum depression.
So getting my first round of thyroid panel and finding out that my thoughts that something being wrong have been confirmed was bittersweet.
I was then sent to see an endo who requested I have a thyroid uptake and scan which was an awful experience. I literally have a burn mark on my neck from the scan that doctors refute was caused by the scan eventhough it appeared after the scan on my neck. The scan confirmed my diagnosis of Thyroid disease specifically Grave’s disease. Now after the scan I was sick and feeling very fatigued but at least I had a diagnosis. The doctors wanted to either do Radio Active Iodine or Medication but I wanted more tests to understand what was causing the condition which I was denied seeing as they felt I have a textbook case of Graves.

I decided to try and get my condition under control with diet changes and stress reduction practices which helped me alot.I feel that if Grave’s Disease is the sole issue and I can not help it on my own I will do the treatment. But I have a problem with something that does not treat a condition but simply mask it without even knowing the real probelm.

But after a year of being hyper I began to become more stable in my labs and my doctors(primary and endo) felt that they would just monitor to see what happens. The begginning of 2012 I noticed a difference in my symptoms. I am no longer experiencing the heart racing, nervous energy or balance issues but I am now having weight gain even with diet and excercise,dry skin all over my body especially on my shins(there I have dry patches of dry skin that are horrible),I am cold very often and fatigued most of the day and pains in various places. Also I am having irregular periods(bleeding in between periods so much so that I couldnt tell you when my last period started or ended)

Some of the more lingering issues is the numbness in my limbs that I had alot when I was hyper but have stayed around since I am now leaning more towards hypo. But these symoptoms have evolved. My hands and feet do get numb often but I have begun to have sharp shooting pain in my arm specifically my right arm and now I am having pain in my chest left side. It feels like my heart cramping or painful flutters and sometimes hurts so much it is hard to take a deep breath. My body has been feeiling alot of pain lately that is often unexplained and going to the ER does not help. I do not want medicine for pain I want tests ran and many times this is almost impossible to get with not having the best insurance. I would really appreciate some feedback,insight,input or positive encouragement. I have an appt to see my endo(which takes a long time to get) after having bloodwork done that shows high levels of thyroid antibodies. I am frankly tired of being sent from doctor to doctor and given just a textbook answer that no longer seems valid when my condition changes. I feel that if tests were ran that could pinpoint the source of my issue I would be fine. My issue is what tests should I be asking for. I asked for adrenal gland and pituary gland tests but was refused because my doctors feel that I have a textbook case of Graves and they are not necessary but I need help figuring out what tests would help. Sorry for the length of this post but it has been quite a eventful journey so far

[Kimberly]

#1171759

Hello and welcome to the forum!

We’re not doctors here, just fellow patients, but the arm pain and chest pain certainly sounds like something that needs to be evaluated out ASAP. I know you said that the ER hasn’t been helpful — but personally, I would be knocking at their door until someone paid attention!

It might also be helpful to note your symptoms in a bullet-point type of format, as this might help a doc finally put the puzzle pieces together.

In terms of testing, this board is geared towards managing Graves’ and other thyroid issues, so we are more familiar with the standard tests: TSH, Free T4, T3, and antibody testing (TRAb, TSI).

Also, a side note for others who are reading — for patients who have been diagnosed with Graves’ and are hypER, the Foundation recommends pursuing one of the three conventional treatment options (Anti-Thyroid Drugs, RAI, Surgery). Some patients might get lucky and see their symptoms resolve, but it’s much more likely that complications will occur from refusing treatment, including heart issues, bone/muscle wasting, and thyroid storm, which is a potentially fatal condition.

Take care — and keep us posted on how you are doing!

[emmtee]

#1171760

I was diagnosed with hyperthyroidism by my GP. This was based on my report of tremors, her observation of my enlarged thyroid, and blood test results of low TSH and high T4. She referred me to an endocrinologist and ordered a thyroid uptake and scan to be completed prior to my endo appointment. The nuclear medicine doctor diagnosed the Graves’ Disease based on the uptake and scan.

Once I had the diagnosis, a lot of things suddenly made sense: the weight loss in spite of eating whatever I wanted, the eyelid retraction, the hightened emotions, etc. Like you, I had read about the thyroid antibody test and was told that it wasn’t necessary for me. It was clear from my uptake and scan that I had Graves’. My nuclear medicine doctor was great. He had shown me my scan, and I could see that one side was larger than the other, and that the idodine was absorbed evenly – no dark spots (hot nodules) or white spots (cold nodules.)

I was fortunate to have found this bulletin board right after my diagnosis, and I learned that lots of people here were diagnosed without an antibody test.

You know that saying, “If it looks like a duck, walks like a duck, and talks like a duck, it must be a duck.” Of course, you could do x-rays, a blood test or look at its feathers under a microscope. But do you really need to?

I’m glad you’re going to see an endocrinologist. Once you get your updated blood tests (after a Graves’ diagnosis, we should all have them on a regular basis for the rest of our lives) you’ll have a better idea of what all your symptoms mean. I wasn’t aware until reading this bulletin board that it’s possible to have both Graves’ Disease and Hashimoto’s Disease. In any case, although I understand your desire to treat the “real problem”, there is no treatment against the antibodies. The best that modern medicine can do right now is to treat the body parts affected by the antibodies and hope for remission.

The thyroid affects your whole body. Of course it’s possible you have other issues, but if that’s the case, it will be easier to identify those issues after you get your thyroid hormones in the normal range.

Good luck! Please do keep us posted.

[Harpy]

#1171761

Rosethrivedeep
You are to be commended for your determination,
But you may want to consider at the very least taking a small dose of the medication, just to get your symptoms under control. There is some anecdotal evidence from individuals experiences that the medication also assists in reducing antibody activity as well as managing thyroid hormone over production.
By all means try to correct other factors in your life & diet, but think of the meds as first aid, not the final remedy, it will just help you a bit more along the path to healing.

[Author]

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