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in reply to: Well, here goes! #1173565
How is everyone doing today?
I am okay. My white blood cell count has always been normal and I have taken Tapazole or PTU for about 5 years now. I was in hospital for MRSA and no doctor has ever cared (found it relevant) that I am on Tapazole.
If I don’t improve, I will be scheduled for a CAT scan of my head and worst case scenario I will need surgery to dig the infection out of my face. I am not at this stage yet though. I am still confident the antibiotics can cure the bone infection!
Keep us updated Arizona Guy. I am just taking my Tapazole while typing lol!
Get Well. Many of us are thinking about you and wishing you well. xoxo
in reply to: Well, here goes! #1173561Hi Arizona Guy.
Sorry to hear about your rough journey. I am 100% thrilled I chose to keep my thyroid and cancelled my RAI. I have 3 normal blood levels now and I still work with the endocrinologist. I am still on Tapazole.
My current health issue involves a potentially fatal/potentially incurable CA-MRSA infection under my skin in my face, neck, head. The infection has moved to the bone now. I am an outpatient at the IV antibiotic treatment centre and I am working with an infectious disease specialist (actually I have seen two).
I am wondering how this MRSA relates to Grave’s.
Anyway, sending you prayers and healing thoughts…
in reply to: Well, here goes! #1173525How are you doing now? Hope you are good!
I wonder if they still use these seeds that can migrate? That is very scary. Do you know if they still use these seeds?
I hope your new journey into hypo world will be smooth sailing! xoxo
in reply to: Well, here goes! #1173522I am so sorry to read this, your post was delivered to my email. I read that the antibodies increase after RAI, which probably causes the increase in TED. I had a problem with the idea of being alone, to protect others from radiation exposure, and having a possible life threatening case of thyroid storm. I also had a problem with increasing my cancer risk.
I thought this was interesting: http://www.cbc.ca/news/health/story/2012/09/07/breast-cancer-brca-radiation.html
Women at a hereditary risk of cancer should try to avoid chest, breast x-rays. This can be detected with genetic testing. One chest x-ray is .005 to .020 of absorbed radiation. A typical higher dose RAI is 10 000 rad (absorbed radiation). (I didn’t keep this reference as I had no plans of posting on this forum again). The good news is miraculously most people don’t get cancer from RAI!
What do you mean mismanaged radiation for your grandma? I don’t know what the CBC results mean. Have you looked them up? Interesting the numbers are off? An organ essential for life is being destroyed though. I hope you feel well again soon!
I am managing the disease with heart rate readings, blood tests, seeing the endocrinologist, low iodine diet, and Kundalini yoga and chanting. I am taking 20mg Tapazole as a maintenance dose right now, down from 40mg.
I wonder how long that thyroid dump can last? I thought it would be over by now? So if you talk to the endocrinologist on call you pay for this? I would talk to the on call endocrinologist at the hospital if I was in your situation.
I hope this is your last bad day! Keep us posted & good luck! PS. I talked with Sarah Kramer the other day!
in reply to: First Normal Labs Since RAI #1174244I get my blood test results online within 2-4 hours of having them done, so I know they don’t take long to test. I don’t know why you waited so long? Can you have the results sent to you? For me, the antibody tests get sent to the mainland (Vancouver) and take 10 days to get results. In the 7 years I have had Graves’ I have always received my TSH, T3, T4 results same day.
Time for a new endocrinologist I think. I have read about and talked to many people not feeling well being hypo, even though they are on replacement hormone. Many of them say doctors aren’t listening to them in regards to how they are feeling. I hope you get back to feeling better soon!
in reply to: Temp rising #1174225I needed a larger dose of Tapazole to get close to normal, still haven’t hit normal for T3, T4 in 7 months, TSH has been undetected the whole time too. I was taking 40mg for a few months and now 25mg. The endo was surprised I didn’t stabilize on 20mg. Then he upped it to 40mg. If he had of done a small jump in meds I think I would have stayed hyper, so maybe this is what you are going through? I do the labs and have my results on my computer in 2-3 hours. In the past, 20 mg of Tapazole was enough…go figure. Good Luck!
in reply to: Well, here goes! #1173499Here’s hoping you never have any complications! Get well soon!
in reply to: Well, here goes! #1173497Good luck you two! I hope you are feeling better today!
I met and went to a US military talk at my uni during the Iraq war. The soldier was seeking asylum in Canada as he had been lied to before entering the military and felt the US war was unjust. Anyway, I remember him saying that soldiers were shooting their own legs to go to Germany, or another country to get medical treatment and get out of Iraq. The military charged them with damaging US property, as that is what a soldier is!
Correct me if I am wrong, but this is what he said! My point being you probably, as a military member, had no choice for treatment. In the civilian world, in Canada, I don’t think a doctor can force you to take any one treatment for Graves.’
Cheers you two! xoxo
in reply to: Dependent on Hormone Pills #1174137The dissertation I posted is a PhD dissertation based on peer reviewed journals, two of them. They are in Finnish. A dissertation must be based on accurate information. I have a panel of 4 professors checking for inaccuracy and sloppiness. All 4 of them don’t have to be discredited allowing me to publish inaccurate info. I also must maintain a B+ (77.5 or 80?) average to stay in the PhD program, same rule as Master’s. I only posted information that I wanted before I got RAI. I even called the hospital for dosimeters, so I would know my radiation dose. Found 3 peer-reviewed journal articles on exposure to loved ones, but only one, the one I posted, on exposure to the patient.
My blood shot up because I was told to stop the medication for RAI. If it wasn’t for waiting for RAI, if I had of cancelled earlier, I am sure my blood would be normal. I was a shade off normal a month ago. I feel okay. I went on 2 hikes Monday not knowing my blood wasn’t normal.
I am in no way criticizing those who have chosen RAI. I am not adamant on posting information against RAI, but I am adamant in posting the info I wanted, because others might be searching for the same info. This is the only information I got relating to the dose of radiation a patient receives, the information I wanted. I found more than one peer reviewed article discussing the radiation dose for the thyroid scan (I think it was 63mSv for the 24 hour scan). A yearly average dose of radiation is usually between 2-4 mSv.
in reply to: Dependent on Hormone Pills #1174133My email came back, so I don’t know how to contact Saara Metso, the author. I will search for other radiation exposure articles later.
in reply to: Dependent on Hormone Pills #1174132http://acta.uta.fi/pdf/978-951-44-7081-3.pdf
On Page 32, this dissertation states that patients receiving RAI for hyperthyroidism receive 888 mSv per 1 mCi of radiation. I was to receive 14 mCi of radioactive iodine 131 (before I cancelled it) which would be 12 432 mSv of radiation over several weeks. This is equal to 621 600 chest x-rays, since one chest x-ray is .02 mSv (I have also read .1 for a chest x-ray, so it varies). This seems awfully high and needs more researching to verify, although I would hope a dissertation is accurate upon publication. Maybe I am misinterpreting a measurement or something? Note: I have emailed her to clarify this dose. Will post her response if/when I hear back.
I have tried to go back to the original source of the 888 stat, but haven’t found it yet. Correct me if you read this data differently than me.
This chart says .05 exposure to family and I read the exposure could be as high as 3mSv for family members, so equivalent to 150 chest x-rays on the high side of exposure.
http://onlinelibrary.wiley.com/doi/10.1002/cncr.22635/full
This article outlines the increased risk for certain cancers following RAI.
Also there are two varying half-lives for RAI, biological and physical. It is wrong and simplistic to think in terms of biological half-life only.
Cheers! My blood levels (T3, T4) haven’t stabilized in 7 months and I am not happy about it. My TSH has been undetectable for 7 months also.
in reply to: Dependent on Hormone Pills #1174127Upon talking to family in Morocco, we discussed about 5 people who had the surgery for Graves’ disease there, one of them permanently losing her voice. None of these people were given another treatment option. This is not an academic study, but I do know Morocco medicine stems from the European model of medicine.
I based my decision on medical journal articles, studies, and personal stories. I have talked to people who have had success with RAI and many people struggling to regain health years after RAI. I have almost completed my PhD and I work at a university. I have access to journals and other scholarly articles with my university account. This is what I was reading. I don’t really know if these articles are available to the general public. I think most require a university account? I have saved some of these articles to discuss with my doctor and tell him why I didn’t feel comfortable with RAI.
How many people die or suffer from myexdema coma after RAI or as a result of being hypo as opposed to thyroid storm with Graves’ Disease? Of course I will not chose to stay hyper. My goal is long-term drug therapy, but my endocrinologist will probably call me tomorrow and I will learn more.
xoxo
in reply to: Dependent on Hormone Pills #1174125What bothers me is being radioactive and affecting others and my environment. I live near rock, fly and I have x-rays, but I don’t walk out the hospital after an x-ray and affect others with radiation. I don’t come home and give my cats a dose of I-131 for weeks afterward like I would doing RAI. Everything you touch in the house becomes radioactive, the toilet, cutlery, the bed, the room and this lasts for weeks. An x-ray is a one second exposure to radiation, with no exposure to your loved ones, this RAI is weeks of exposure.
I called the hospital wanting dosimeters so I know how much radiation I have been exposed to on the outside and my partner wants to know how much radiation he is exposed to. Then we can determine for ourselves when it is time to hit a hotel or whatever. It isn’t recommended to go to the hotel but if it is perfectly safe for me to radiate my house then it is perfectly safe for me to radiate a hotel! Is the radiation equal to 100 trans-Atlantic flights for example? Is it equal to what an x-ray technician is exposed to in a year? This is the information I want to know. Plus I don’t know if I-131 is man-made or a natural substance. I live near rocky land which is a natural source of radiation, but it still increases my radiation dose every year.
The guidelines I read said no sleeping with children (so my cats) for 18 days as a precaution. Well I am not going to isolate my cats for nearly 3 weeks. I haven’t found a good study talking about the safety of pets after RAI. I read how pets receive the same amounts of radiation as humans in the house. This really concerns me…the lack of research for pets on RAI exposure.
Anyway, my RAI is getting cancelled. Too many unknowns for me. And too much guilt exposing others to the radiation when I can’t tell them how much they are being exposed to. My blood is probably normal now (I have blood tests this week) but my TSH has been undetectable for 6 months, it is below .6. My T3 and T4 should be normal after 6 months on Tapazole, 40mg for the last 2 months. So I am feeling okay.
I am in no way criticizing others for choosing RAI. I also question why RAI is so unpopular in Japan and Europe? My husband is from Morocco where they follow the French medical system and I know of a guy there who had Graves’. The doctor sent him for surgery, there was never any talk about RAI. I don’t think he had an RAI option. Do they consider it unethical to expose people to I-131 unknowingly as is the case when a patient takes a bus or is out in public?
in reply to: Dependent on Hormone Pills #1174123Well I read in a medical report that a Graves’ patient who has a thyroid is more radioactive then a person with cancer who no longer has a thyroid, because the thyroid isn’t radiated and radiating everything around them like the bed. It tends to pass out of the body quicker not being taken up in the thyroid. The fact that a dosimeter might pick up the radiation weeks after the treatment makes me nervous. We are told to have a letter in case we travel to the US or another country where the radiation can be detected weeks afterward, we are told to carry the letter for 4 months. Radiation on an individual can be related to bomb making, so this letter is important. I am too uncomfortable to have RAI. I wanted a quick end to this disease but I was almost throwing up this morning just thinking about taking this pill.
http://www.thyca.org/ataradiation.pdf
http://www.classicboatfestival.ca/at-rest.htmlHaven’t read everything yet in the replies, but will respond when I have more time!
xoxo
in reply to: Dependent on Hormone Pills #1174120Looks like I will be cancelling my RAI! My husband freaked last night reading about the precautions and I haven’t received any guidelines from the hospital. My husband said he wouldn’t come near me for 7 days leaving me alone when I could have a thyroid storm or when I am sick. Plus my doctors guidelines don’t match the University of Toronto guidelines (thanks to AzGuy for this info!) and I am just too confused about the safety of all this radiation for myself, partner and cats. Lots of people knowledgeable about radiation say it is nuts people get to walk out of the hospital radiated the way we are. Supposedly we are already getting radiated (I-131) from Fukushima…I don’t know how true this is though.
I read how one is more radioactive getting a high dose of I-131 when one has a thyroid. When people with cancer get I-131 after they have had their thyroids removed, they are less radioactive than a Graves’ patient like myself.
Anyway, me and my thyroid are off to the beach!
Happy Weekend!
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