I seem to find such relevant topics on this site when I am having problems.
I have posted a thread about a contrast dye called Gastrografin about a month ago. I was wondering whether I should drink the solution because I would be "off" for at least a month after a scan, with skin peeling off my hands, tiredness, shakiness, and blood pressure fluctuations. I try to be conscious of what I am ingesting dietary-wise and have known unofficially (by doctors in the non-conventional world) that I have an adrenal issue. Well, my last scan showed a met to the adrenal gland (have posted in another thread about that). I've also noticed my hair, which has just grown back for the second time, is thinning, and there is more in my brush. Now I have found this information
http://www.drugs.com/pro/gastrografin.html#s8-it can cause thyroid problems. I am hardly ever tested to see if my electrolytes are balanced-they just check my creatine- and have been on a bone-remodelling pill or bisphosphonate for almost two years-also hard on the kidneys.
I didn't think I was metabolizing the bone-remodelling pills properly and my liver function tests were rising (although my doctors seemed to think that was okay) so asked to have Pamidronate, an IV form, which they gave to me over 1 1/2 hours;protocol is 1 hour but I requested to have it longer because things are such a jolt to my system. I had at least asked for hydration beforehand and felt okay when I went home. The next day, though, I felt like I had been hit by a truck-I could barely move, I felt very thirsty, and VERY anxious and holding my breath all the time. The next day I had a fever. This was two weeks before my scan.
I have also been having my Herceptin infusions in between all this. Last year I landed in the hospital for three days after my first chemo and my next Docetaxel/Herceptin was one week later. They pushed the Herceptin through in 30 min and I had heart palpitations and was given oxygen and steroids, so it was put in my file for me to have Herceptin over one hour but I've still been tired for at least a few days afterward. I have known, through saliva testing, that my low period is from 12-4 in the afternoon so I have asked to have my Herceptin in the morning when I have more energy, but have been told that chemo infusions are more in the morning so I have my treatments in the afternoon around 1 or 1:30. Not anymore, now that they can see I have an adrenal problem my request for 10 a.m. has been granted, although the next one is for 11 a.m.
I often wonder if treatments that are given weekly are more effective because they are at a lower dose and probably the patient is given hydration more regularly, so it is easier on their bodies than every 3 weeks.
In light of what has been happening to my body lately and things being slammed through it at a protocol rate instead of an individual rate, I have delayed my last Pamidronate. I am so angry that we (especially stage IV) are having scan materials that are decimating our adrenals and thyroid and having treatments that our bodies cannot process at the minimum infusion rate. We need these treatments given over the longest possible time to enable our bodies to heal and adjust. How many women are being given treatment after treatment without any regard to protecting our bodies with patience and monitoring. I wish I didn't feel like a protocol, standard of care or time in the chair. I am also not going to ingest that contrast solution anymore-I have had 6 bone/CT scans in the last 2 years.
I'm sure doctors really do care for us and are doing the best they can with the evidence they have, but we are individuals and these methods are affecting our hormones immensely. (dexamethosone is a great one on blood sugar) We are also just one patient in their huge caseload.
I believe that if the conventional medical community doesn't recognize the physical, mental and environmental stresses that are being imposed on our bodies before we are diagnosed and additional stresses during our treatments that are affecting our adrenals, thyroid, and many other hormones, as well as damaging our organs, then a cure will not be found. It is a vicious cycle-stress in some form, I believe, causes the cancer, and ongoing treatments continue the bombardment. We need the treatments, but there has to be more aid by monitoring in terms of diet, lifestyle changes, supplementation, stress reduction to help rebuild our systems. Add to this the fact that we all metabolize in different ways but all basically all given the same dosage for Tamoxifen, Letrozole, and other meds. We are INDIVIDUALS!
Anyway, rant is almost over. What do I do now? Do I take iodine, or have I had an iodine overload from the Gastrografin? My thyroid function hasn't been checked for months, and one pharmacist said to have my T3 and T4 levels checked, but they only did the T3 if that's okay, the T4 isn't run-something like, that, the lab tech explained it to me, a way of the government cutting costs. The same thing with vitamin D testing-it was costing the government too much money so now we have to pay for it ourselves.
Sorry, I should have put this in a separate thread, maybe, but there are parts of my post that pertain to this thread. I'm trying to get ready to meet with a new onc in the larger centre (my regular one is on a research sabbatical) and I feel like I'm getting ready for a court case with my binder, printed out info on studes and from this site, and questions. I don't know what will be recommended for the adrenal met-as usual, I am unusual in terms of my recurrences.