[AllieKatz]

#1060616

I was diagnosed with Graves Disease 1 1/2 years ago and have been taking ATD medication Methamazole. It appears in my family there may be a genetic predisposed gene for GD. My paternal great grandmother had Graves with nodules and a small un noticeable goiter. She passed away when she was 90..I was 12 and it is unknown if her passing was GD related. Her son, my great uncle had GD with nodules and a goiter however his nodules broke off causing brain tumors and he passed away in his mid 60’s from the tumors. I was 16 when he passed. “Ditto” for his son, my second cousin…He passed away from the GD related brain tumors when he was in his early 30’s….I was 19 at the time. My family GD may have skipped two generations…My grandmother and my father may have had undiagnosed GD. My father is healthy and in his early 70’s. His sister, my aunt has very noticeable budging eyes, similar to TED however she won’t see an endocrinologist. Predisposed genetically inherited autoimmune diseases can skip a generation. Last year, my endocrinologist ordered an ultrasound guided needle biopsy of my nodules. While laying on the table, a surgical doctor made some punctures at which case caused some bleeding. He was a new doctor and afraid of puncturing my Carotid artery. He called in a specialist to complete this procedure. She also was not able to get an adequate sample fearing she may also puncture my carotid artery, therefore my ultrasound guided needle biopsy was incomplete. The results came back, “lymph reactive and calcification”…whatever this means? I am concerned of brain tumors with my family history. I cannot have a Thyroidectomy nor RAI since I have other medical issues (heart and 2 past TIA’s as a result from Thyroid Storm)…therefore surgery can be fatal in my case. Any advice regarding surgeon referrals who are successful performing these ultrasound guided needle biopsies? I am willing to travel to ensure I receive the best possible procedure. Thank You!

[Kimberly]

#1183656

Hello – Wow, sorry to hear that you went through this awful experience.

I’ve not seen any specific research on a connection between Graves’ and brain cancer, but certainly, any suspicious thyroid nodules should be checked out.

In terms of ultrasounds, I know of one doctor who exhibited next to the GDATF at a conference a couple of years ago and another who regularly does seminars on ultrasounds. If you have a university or teaching hospital near you, that would be a good place to try as well.

(Note on links: if you click directly on the following links, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.thyroidflorida.com/team.html

http://www.thyroid.com/

There is also a new genetic test that can help in cases where biopsies are inconclusive:

http://www.thyroid.org/patient-thyroid-information/ct-for-patients/vol-7-issue-5/vol-7-issue-5-p-8/

Wishing you all the best!

[AllieKatz]

#1183657

Kimberly,
Thank you so very much for the links and info. I greatly appreciate this. I will research this over the weekend.

[snelsen]

#1183658

Well, to be sure, i am speaking as another Grave’s person. My post may seem a bit questioning, but I think it might be helpful for to question some of your assumptions, in the best interest of getting the best care possible.

However, I cannot help abut respond to your assumptions that relate Grave’s to brain tumors. It is YOUR assumption. I suggest you try to find evidence based studies and research that support your thoughts on this. I find this conclusion that you have reached, a bit far fetched.

I also question your conclusion that your TIA’s were prompted by your Grave’s history. How o you know that>? Is that what you were told? You have had this diagnosis of Graves only 1.5 years. What prompts you to know that your TIAs are a result of thyroid storm. Do you know what thyroid storm is?? Here is a reference for it. Does this describe you? Were you hospitalized? It is a medical emergency. It sounds to me that you got a diagnosis of Graves’ ad began treatment for it with methimazole. With that treatment, it seems very unlikely that you did have thyroid storm. How did you reach this conclusion and diagnosis?

I challenge your assumption that predisposed genetically inherited autoimmune disease can skip a generation. This generation skipping stuff has been disproven multiple times. Provide the research and studies for yourself.

The carotid artery is a HUGE vessel. It is on either side of the thyroid gland. You can feel it on yourself. An ultrasound guided biopsy is pretty standard and simple stuff for a general surgeon. Very easy for them. I have scrubbed for them as a nurse.

Not sure where you live. I can speak only to Seattle (University of Washington, Swedish) and Iowa City,(University of Iowa Hospitals and Clinics,) places I know well, regarding referrals. Send a PM if you would like to discuss it.

It is good to focus on academic places, where there are plenty of patients, so surgeons who do thyroid surgery do at least 50 procedures a year..and in this case, I am referring to thyroidectomies. Much different than an ultrasound guided biopsy.

Not sure how you conclude the two TIA’s are a result of, or related to a thyroid storm. I question your assumption about this causal relationship. I’m inclined to think unrelated. Take some time, find some literature to support this relationship..I am not sure WHY you think you had a thyroid storm, or if there is a misunderstanding about what it is. Generally, it occurs to people whose Graves is untreated, this does not to be your case. And it is an emergent, life threatening situation where a person can die. Thyroid storm is a phrase that is not understood very well, and used when it does not really apply to what happened. If you had a storm, you would have been in the ICU, and very very ill, requiring a team of docs, endocrinolgists, surgeons, internal medicine docs, maybe pulmonary docs. Was this your experience ?

Heart condition covers many aspects of cardiology. Have you seen a cardiologist, been worked up by one? Did the CARDIOLOGIST say that RAI AND thyroidectomy both contraindicated?? That seems very strange to me.

I am speaking from my own experience, plus a familiarity with health care, having worked in it.

I have atrial fibrillation. I have left ventricular failure of my heart. I am quite old. None are contraindications of any procedures, and certainly not Rai, if you are interested in having that. I do not know how old you are, for that matters, re having TIA or heart condition If you want to PM to discuss this further, please write. Hoping Kimberlys’ references will be helpful to them I’ll read them too.

Were you untreated for a long period of time? Doesn’t sound like it.

Family history is very subjective, especially a few generations back. It is not very reliable.

I wish you the very best.

[AllieKatz]

#1183659

Snelsen, In response to some of your Q’s..

1. Like yourself, I reside on the West Coast, North.
2. I am in my early 50’s
3. I spent years working towards my Ph.D in the areas of Cancer and Virus research in conjunction to PCR research in the area of Recombinant DNA AKA Genetic Engineering. Currently, I am a public school teacher. I read research abstracts pertaining to possible predisposed links to various autoimmune diseases..
4. Regarding my Thyroid Storm Diagnosis. Approx 8 years ago I was diagnosed as having hypothyroid…My primary physician prescribed me Levothyroxin. Five years elapsed and my life took unexpected turns. My husband was diagnosed with terminal esophageal cancer. Since I was his primary caregiver until his passing, I was not attentative to my own health…I was immersed in seeking clinical trials for him. One year prior to his passing, I landed in the hospital with a TIA…One year after his passing en route back to the states from overseas travel, I had another TIA, sweats, jitteriness, fever, confusion, nausea, my heart palpitating, in essence symptoms indicative of 99.9% of all the Thyroid Storm symptoms. I selected a more experienced primary care doctor under my health plan who questioned that perhaps #1. I had been misdiagnosed by my former primary care doctor as having hypothyroid when in actuality I really was hyperthyroid (blood tests possibly misread?) or perhaps #2. Initially I was diagnosed as having hypothyroid for the first few years and for some unknown reason, my hypothyroidism metamorphisized intto hyperthyroid Graves disease. If a patient such as myself who has undiagnosed Graves Disese is given Rx meds to treat hypothyroid…obviously, I may have been given the wrong medicine…NO WONDER why I landed in the hospital with Thyroid Storm! Prior to my Graves Diagnosis, I visited my family in Israel and while en route on my 18 hour flight returning back to the states, I became ill with fever, nausea, jitteriness, sweating, heart palpitations, confusion etc…I thought I was having a heart attack..My body literally “crashed” especially driving over the bridge to return home, I started to fall asleep behind the steering wheel..I was extremely fatigue….I ended up in the ER and was diagnosed with Thyroid Storm…I was finally referred to an Endocronologist. He suspected Graves Disease at which case he took me off of the Levothyroxin to perform a two month baseline blood test study. ..Results came back positive for Graves Diasease, neck nodules and a small goiter. He prescribed me The ATD Methamazole. Within a few weeks, I started to feel,better. He also suspects AFib….I will see a Cardiologist soon. My Graves diagnosis was approx. 1 1/2 years ago. Per my Endocrinologist’s request I have blood tests performed every 6 weeks to every two months. Although my thyroid blood levels are gradually approaching normalicy, my Endocrinologist feels that this is a temporary remission, therefore he continues to have me continue the blood tests. Although I feel much calmer, I frequently become sick with head colds, ear/sinus infections, GI track flu’s, shingles, bronchitis. Ironically, I am immunized with the flu vaccines every year and I continue to become significantly ill!
Perhaps these illnesses are the result of having a compromised immune system from the Graves autoimmune disease? …I had chronic bronchitis 3X in the past year, all lingering for 6 weeks to 2 months and all resulting after having the flu and cold virus. I currently have my 3rd episode of bronchitis in the past 12 months and now my primary doctor thinks that it possibly progressed into Pneumonia. I will have a chest X-ray on Monday.. Just wondering if anybody has suffered from more flu’s, colds, also ear/sinus infections, shingles, bronchitis since their Graves diagnosis?

[AllieKatz]

#1183660

I had several appointments last week with a Cardiologist assigned to my case via my Endocrinologist. They are both within the same medical group. My Cardiologist started performing tests such as an EEG, stress tests, blood tests and an Echocardiogram scheduled in June. He is highly concerned because he received two of my hospitalization reports indicative of my two TIAs and the fact that Since my Graves disease was undiagnosed for years thus causing Thyroid Storm (damage to my heart from significant heart palpitations among many other of my TS symptoms) makes me a viable candidate to be tested for Afib…He suspects Afib. He is also concerned because I was diagnosed as having asthma when I was a small child. Having asthma attacks has put added stress onto my body especially since my GD diagnosis….Both my asthma and my GD causing my suppressed autoimmune system making me highly vulnerable to more Gastrointestinal flu’s, head colds, bronchitis 3-4X per year lingering for 6 weeks to 2 months! In conjunction to him suspecting Afib, he also suspects heart damage (Myocarditis) as a result of many of my infections…He will perform the appropriate testing….Such a vicious cycle! I am grateful to my Endocrinologist and my newly appointed Cardiologist for “being on top” of my Graves Disease!

[snelsen]

#1183662

Holy Cow, Allie!
Thank you for writing clarifications. I am so glad you are being followed by end and cardiology, and there is some continuity of care and concern for your very difficult medical stuff. Gee whiz. What a history! I am hoping you and the two docs can make sense of all this, and FIX it. I am so sorry. This is so darn difficult. I just finished wearing a Holter monitor for a (very long) WEEK! You may end up with one of these, with the purpose of catching and recording some fib. I had ONE episode, lasting a day. Long enough to have the diagnosis, and now I am on warfarin (Coumadin) and sure wish I weren’t.

I want to write more, but not tonight. Too tired. Also will send a brief PM to you on topic unrelated to Graves’. Might be refreshing! But for tonight…
good night
Shirley

[AllieKatz]

#1183663

Dear Shirley,

Thank you so much for your attentiveness and sharing with me your medical challenges. I am so sorry you are going through all of this. Such a complex disease with many other compounded illnesses factoring into the GD makes it quite a challenge. I commend you for all of your nursing knowledge and helping others as well as you being on top of your GD, AFib, TED etc…
Just wondering if your climate in the Seattle area affects your GD? Does the rain during your winters slow you down? I reside in Sonoma/Napa Wine Country in N CA and this month of May is brutal regarding all of the pollen from the vineyards/wineries, resulting in my struggles with bronchitis and asthma and now my Graves Disease has caused me to slow down quite q bit! We are having a major drought and I hope we eventually have rain since the rain flushes the pollen out of the air making it easier for me to breathe…It usually rains 3 months during our winter, however not this past winter due to our drought….The right amount, good optimum levels of rain is good for me however one winter we had an El Niño and it rained non stop for 5 months…too much rain in my case causes mold spores which I am also allergic to..My 24 year old daughter is graduating Law School, earning her Doctorate of Jurisprudence Commencement ceremony next weekend and takes the CA Bar exam in July…She is a Licensed caregiver and works as an Attorney Intern for the Disabled. I met many people with MS. A handful of them take honey bee injections. As you may already know, Honey bee injections cause a natural steroid response in our bodies triggering our opiate receptors, neurotransmitters to release endorphins thus releasing natural steroids therefore suppressing inflammation. I am considering Honeybee sting therapy to observe if this may suppress my GD! My younger daughter, my 23 year old like myself has the asthma. She and her husband in the Army and their two babies are relocating to Tempe, Arizona in July to complete their degrees at ASU. My son-in-law is a Football player and both my daughters are competitive Gymnasts/University Cheerleaders/Coaches. Every time my 23 year old is in AZ, the dry climate suppresses her asthma, bronchitis and her sinus infections completely go away. Their plan after they graduate from ASU will be to buy a house in the Phoenix/Gilbert area. They love the hot weather. I am considering relocating to AZ when I retire however I prefer the cooler higher altitude areas such as Flagstaff, Sodona and Prescott. My body cannot tolerate extreme Phoenix heat and I have always loved the cold weather. I am originally from the Midwestern states where it gets quite cold during the winters with lots of snow blizzards…Love It! I hope my daughters don’t end up with GD….such an awfully complex autoimmune disease..

[Kimberly]

#1183661

Hello – I would use extreme caution before pursuing bee-venom therapy. Here is a link from a credible source:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.bidmc.org/YourHealth/HolisticHealth/AlternativeHealth.aspx?ChunkID=13504

A couple of quotes:

“…there is not a lot of evidence so far to show that bee venom is an effective therapy.”

“The greatest risk of bee venom therapy is the risk of a severe allergic reaction, including anaphylactic shock, which can cause a person to stop breathing. If not treated immediately, anaphylactic shock can result in death.”

Although there are some anecdotal stories on the Internet, there is very little credible research out there on bee-venom therapy and *no* research I’ve seen that is specific to Graves’ disease. I have a family member who is deathly allergic, so I personally wouldn’t try this.

[AllieKatz]

#1183664

Hi Kimberly,
Hope you had a wonderful Memorial Day Weekend. Thank you for the link. I am aware of anaphylactic shock. I used to carry an Epipen (epinephrine) with me years ago due to my +4 allergic Rx to bee stings (determined via a scratch test) prior to my taking allergy shots. As I became older, I had another scratch test and my bee sting allergy has dissipated…perhaps due to the fact that for many years, I had immunotherapy (allergy shots) specific for everything I have been allergic to over the years such as grass, trees, pollen, bee stings, Penicillin, tetanus, mold, dust mites, cat dander (brutal allergy) at which case I need my rescue inhaler, Ventolin or an epipen when I come in contact with cats….Last year while swimming in my backyard pool, I was stung by a bee and I took my Ventolin…no problems at all and the bee sting totally numbed the bodily pain I am always experiencing. I will not submit myself to
Bee sting Therapy until I speak to my Doctor first and I will always have my Albuterol and Epipen available in case of an emergency. My neighbor has a Honey Bee farm for Local Honey production. I buy his local honey and have it with my tea throughout the year to boost up my immune system. Just wondering how your warm climate effects your GD? Does the heat make you more fatigue or do you prefer hot weather? I will visit my daughter and my son-in-law after they move to AZ this summer….I’m concerned regarding the heat. I visited friends in Casa Grande a couple years ago during April and the weather was cool and comfortable.
Thank You for the link….I will read it this week.
Allie

[Kimberly]

#1183665

Hello – If I was planning a visit to Arizona, I would *not* do it in the summer. People say “it’s a dry heat” – but let’s face it, when it’s 110-115 degrees, it is miserable! The reason people live here is so that they can enjoy the fabulous weather the *rest* of the year.

I was living here when I was diagnosed and have been here the whole time, so I can’t really comment on how my Graves’ has been affected. Summertime temps here are always difficult – with or without Graves’. When it’s really bad, I will run a couple of quick errands in the car and need a shower and a change of clothes by the time I get home! Ugh! But we never have to shovel snow.

[Author]

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