If you have missed out on the latest drama with me and my health issues, please read part 1 and part 2 to catch up and then this post will make sense.
This morning my husband took me to see the endocrinologist and I thought this day would never get here. Finally – I’m going to get some help and relief – and I am, but I’m not going to feel better immediately. The endocrinologist listened to everything that has been going on for the past 16 days, all of the symptoms, about the doctor’s visits and the ER visits, and the blood tests, and he actually listened and wanted to know what questions I wanted answered.
The first thing he told me was that my T3 hormone level is very high. The T3 level is supposed to be 76 – 181 and mine is over 300. He wanted to know how long I have been on the thyroid medication I am currently taking and I told him for 5 years. I was put on the T3 by the doctors at the Fibro & Fatigue Centers in Philadelphia when I was getting treatment there. He said there was two problems with this type of medication. The first problem is that T3 should never be prescribed alone – it should always be prescribed along with T4 – like in a synthroid medication. He also said that compound medications like the T3 I have been taking are not quality controlled so one time the prescription can be weak, the next time it can be very strong. He said my symptoms are coming from too much thyroid and that this latest batch they made up is probably way too strong.
He also said that my sugar is a little high – not anything to be really concerned about yet but the fact that I hadn’t eaten for 3 days when my blood tests were done and my sugar was still a little high suggests that my sugar was probably pretty high when all of this started. He told me to throw out the T3 compound and he started me on 100 mcg of Synthroid. He also did some more blood work to check my sugar and some other things and took a urine sample.
I asked him about the hypercalcemia on the blood test. He said the level was so mild on the blood test that it would not be causing the type of severe symptoms that I was having. He is pretty positive that it is the excess thyroid hormone and the elevated sugar working on my kidneys that is causing that problem there. When Bill and I got home, I checked the prescription date on the T3 and I got it on 6/2 and I started having all of these symptoms on 6/6 so everything is starting to make sense.
I go back to see him in a month and hopefully I will be feeling somewhat better by that time. I am happy that I am getting some answers and that he did not blame everything on CFS or Fibromyalgia, like so many doctors do. He believed me when I said this was not the same as either one of those. I came home from the doctor’s office and slept most of the day then because my mom has our son for a couple of days. That has been a big help for me in getting some rest.
Were you on Armour thyroid or cytomel? My thyroid is being removed on July 7 because of a huge multinodular goiter that’s wrapped around my trachea and is choking me. I’m planning to go on Armour to begin with and probably also take selenium to aid the liver in transforming T4 to T3.
Hi Diane, I was on a compound prescription of strictly T3 – that is all I know. The endo. put me on Synthroid today.
Sandy,
Have you considered making the compounding pharmacy aware of what has happened to you? They could have made a mistake which might happen to someone else. Glad you got help, finally!
Your doctor was correct in that T-3 should not be given alone. But I disagree with him on the rest of what he told you. Compound pharmacists are a highly trained, highly regulated group. The people who originally ordered the T-3 alone are the problem, not the pharmacists. That is just not true that the medication is not regulated. What is true is Synthroid is a synthetic drug and makes many people including me very ill. T-3 and T-4 are natural. And most dr’s start by putting you on a low dose of a T-3 and T-4 compound. No two people are alike as well as their hormonal needs vary. A good physician not only looks at lab results, they find out how a patient is feeling and adjusts the dosage until the patient is at his/her optimal. This year there was a problem with some big pharma companies when they switched from natural medication to synthetic without informing the patient. Many people started to feel bad. Your situation was different. You were incorrectly put on T-3 alone. But I would also argue that synthetic is a better answer than natural. For a dr to say that compound pharmacies cannot make consistent dosages is untrue and very misleading! Google Stop The Thyroid Madness and they have forums devoted to this as well as many books on the subject. Another problem is determining if you are hypothyroid or actually have an autoimmune disorder such as Hashimotos. Did he run any antibody tests for that? I believe autoimmune hypothyroidism is one of the most difficult disorders to get treated for as so many physicians just don’t understand how to treat it. I have been studying for 2 years and only now am getting my dosage figured out. Once you adjust one hormone, all the others react and adjust. It is a very difficult thing to get them all in balance but it can be done. I hope the best for you … I just had to comment on what he said.