My Graves’ Disease Symptoms

The symptoms I experienced before being diagnosed with Grave’s disease are as follows:

  • extreme fatigue
  • weight loss
  • restlessness
  • tachycardia (rapid heart beat)
  • heat intolerance, always warm
  • heavier menses
  • muscle weakness in arms and legs
  • tremors, felt like I was vibrating
  • increased sweating
  • nervousness and irritability
  • leg cramps
  • disorientation
  • dizziness
  • graying hair which started in my early 20’s
  • severe migraine headaches
  • high blood pressure
  • intolerant of stress
  • inability to sit still
  • heart palpitations
  • restless sleep or inability to sleep
  • distracted attention span
  • loss of stamina
  • memory loss
  • carpel tunnel syndrome
  • sore throat
  • lost my voice for 2 months
  • panic
  • shaking hands and loss of dexterity
  • difficulty concentrating
  • proximal muscle weakness
  • night sweats
  • increase in temperature (fever)

On February 9, 1998 I was given a diagnosis of Hyperthyroidism and prescribed PTU.

At this point in my life I was so tired of feeling sick, that I embraced this diagnosis.   I was so relieved that there was a name and a solution for my symptoms.   I followed the doctor’s advice like a sheep to the slaughter.

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April 3, 1998

This was a day I will never ever forget. This was the day that I submitted to a RAI without doing any research or without understanding the complications that could result from this treatment. I had incredible misgivings about this treatment. In fact, just two days before RAI, I went to see Squirt to ask him if this was really my only option. His answers, like always, were vague and even more confusing. This disaster taught me to always listen to my intuition. Never again will I submit to treatment that I do not understand. Never again will I allow a medical professional to dictate what I must do! NEVER, NEVER, NEVER.

The report about my RAI procedure sites my clinical history as follows and I quote, “49 year old female with Graves’s hyperthyroidism.” The clinical history continues with, “Thyroid 30 grams and four hour uptake at 21%. The report states that the provisional diagnosis is Graves’s disease. Wonder why it is called a provisional diagnosis? Were they not sure? The pharmaceutical report states that I was given I-131, 510 MBq p.o. (per mouth) on April 3, 1998 at 1335 hours. The report also confirms a second time that an oral treatment dose of 510 MBq of I-131 was administered.

When I was getting ready to leave the hospital that day after my treatment, the nurse assured me that I would feel better in no time flat. In this case, ignorance was NOT bliss.

If there is one message that I can get across with these journals, that message is “do not submit to RAI until you have looked at all your options.” RAI may very well curse you to a life with horrendous non-treatable side effects. Trust me I am a prime example of such an error.

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March 6, 1998

blondebimbo1Today was my second visit with the Blonde Bimbo.  I remember feeling so happy and confident that this doctor knew exactly what she was doing.  Of course, at that time I had not read any of her notes or reports.  I had not seen any of my lab results.  I had no idea it was even possible to ask for copies of lab reports.  DUH!!

Following is the Blonde Bimbo’s report for March 6th, 1999 and it reads, “Widebertha remains on Atenolol and has not restarted her PTU since her scan.  She still complains of nervousness and tremor.  Her iodine uptake and scan show diffuse uptake within the gland and a mildly increased radio iodine uptake of 21%.  Recent lab tests are consistent with mild hyperthyroidism with a T4 of 113, a T3RA of 3.2 and a TSH of less than 0.1.  Liver enzymes are raised with an ALT of 78, AST of49 Alk. Phosphate of 549 and a Bilirubin of 9.4. This lady certainly does have thyrotoxicosis secondary to Grave’s disease.  She also has liver enzyme abnormalities in a cholestatic pattern.  These may be due to hyperthyroidism itself but are a bit more severe than one usually sees.  I guess the question is whether the PTU may be playing a role here or whether she might have another cause for abnormal liver enzymes.  I have discussed treatment options with her and in view of the longstanding nature of her symptoms and the question whether some of the liver abnormalities relate to the PTU; she has been booked for a treatment dose of Iodine 131, 14 mCu on April 3rd, 1998. In the interim I have asked her to stay off the PTU but to increase the Atenolol to 100 mg. o.d. I’ve asked her to come back in about 6 weeks after her radioactive iodine to reassess her both from the standpoint of thyroid and hepatic function.”

What really makes my hair stand up on end is her statement “I have discussed treatment options with her.”  This just did not happen!!  The Blonde Bimbo never mentioned surgery.  She never investigated to see whether the PTU was really causing additional liver problems.  She just insisted that I had to have the radio active iodine treatment; that this was the only treatment option available to me.  The Blonde Bimbo also told me that once I had the radio active iodine treatment I would take this little pill every day for the rest of my life and my health would return to what it was pre-Grave’s.  What a load of hog wash!!

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March 3,1998

On March 3, 1998 I had a 4 hour thyroid uptake and scan.  The report says and I quote, “49 year old female.  Palpitation with tremor, anxiety and headache, TSH and T4 increased and the thyroid is normal in size.  The report goes on to say, “The 4 hour uptake of iodine 131 is mildly elevated at 21% (normal range 4-15%).  The gland has been imaged with pertechnetate.  This demonstrates avid tracer accumulation within both lobes.  No hot or cold nodules are identified.  The impression states that the findings are consistent with Graves’s disease.”

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February 20, 1998

singingbertha

Bette Ann Bednarick drew a caricature of the Fat Lady. In my opinion the caricature resembled the Fat Lady perfectly.

Hi. I am Widebertha. I was diagnosed with Graves Disease in January 1998 after approximately 10 years of ever worsening symptoms. Blondie, my endocrinologist at the time, promised me that after I had Radio Active Iodine Treatment, all would be well with my health. She assured me that all I would have to do was take a tiny little once a day pill and all my nasty symptoms would be gone forever. I would be a normal, healthy person. “And I have a bridge to sell you!”

My health has been declining in the ensuing 3 1/2 years.

After gaining over 50 pounds between June 2nd, 2000 and August 26th, 2000, I decided that Widebertha was a very appropriate handle. I should clarify that the weight gain was over 50 pounds in just over two months. All my so-called medical caregivers have never read that right. They claim I gained that weight over a period of one year and some have gone as far as to read that to mean I gained that weight in two years. If I had gained 50 pounds in one year, I would consider that a cosmetic problem.  I consider gaining over 50 pounds in two months a medical problem.

I am a 53-year-old daughter,  wife, mother, mother in law, and Nana. I have two children who are all grown up and married. I am blessed with a darling grandson who is the joy of my life. I reserve my strength for the times I spend with him.  I am a very fortunate daughter. My parents are my constant inspiration.

I do not know what the final outcome of my treatment will be. I do not know if I will ever find the answers I am looking for. I am an intelligent woman who was actively involved in running a business together with my husband. I went in to the office every day and played a vital role. I was also a genealogical researcher and had been in the process of writing a book. I have had to give all that up. My life has become a daily battle just trying to cope with my symptoms. I do know that I am not just a depressed, menopausal, 53 year old hypochondriac with panic issues who is ready for the glue factory. In fact, by now the glue factory would not want me! My life was much to rewarding and interesting to imagine all these symptoms. I have too much I still want to do in life and I need to find some answers.

This blog will contain my story and my perceptions of the never-ending struggle I have endured and continue to endure with the medical system.

I hope to convey my message in a humorous vein. I may at times be sarcastic but forgive me that transgression.

After the diagnosis of Graves disease was made at the country clinic, I was referred to an endocrinologist who I will refer to from now on as the Blonde Bimbo.  February 20th, 1998 was the first time in my life that I saw an endocrinologist.  If I had only known then what I know now my life would have taken a completely different turn that day.  Belatedly, I realized that my ignorance about Graves’s disease would impact the rest of my life.

Blonde Bimbo’s report after this first visit reads as follows: “no lid lag or exophthalmoses was noted.  No adenopathy is present in the neck and the thyroid was essentially normal in size and consistency to palpation.  Chest, cardiovascular and abdominal exam was unremarkable apart from an II/VI mid systolic murmur heard over aortic and pulmonic areas with no clear radiation.  On neurological exam she does have some mild proximal muscle weakness and a tremor of the outstretched hands.  Reflexes are brisk and symmetrical.  She has no peripheral stigmata of thyrotoxicosis.

In short, this lady has mild clinical and biochemical hyperthyroidism.  The duration of her symptoms, if in fact they are all due to the thyrotoxicosis, would suggest a diagnosis of Grave’s disease.  An alternative possibility is that she currently has a thyroiditis which certainly is within the differential given the lack of goiter or definitive eye findings.  For the present time I have asked her to get some further baseline blood work done today.  A thyroid scan and uptake have been arranged for her in the near future with a return appointment to discuss management thereafter.  If in fact she has Grave’s disease given her age and the longstanding nature of her symptoms I favor therapeutic use of radioactive Iodine.  In the interim until things are sorted out I have taken the liberty of giving her a prescription for Atenolol 50 mg. p.o. o.d. (per mouth once a day) for her symptoms of adrenergic excess.”

On February 20th, 1998 my T4 was 113 with the lab normal being 58-140.  My T3RIA was 3.2 with the lab normal being 1.3-2.8.  My TSH was <.1 with the lab normal being 0.5-4.0.

The thyroid antibody test I had on February 20th came back with all results as negative.  Thyroglobulin antibodies were negative, microsomal antibodies were negative, ANA was negative and the Latex was negative.

On the same day my ESR was 51 with the lab normal for a female being 0-20.

The lab noted on the test result that my platelets appeared normal, RPX slight aniso with few macrocytes and no latex present.

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