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Well my Endo just called me back. She said that there is no reason to test the pituitary gland and that the jump from 0.39 to 3.82 is not a cause for concern and the nurse from my Primary care office had no right to tell me that she had never seen a TSH move so quickly. She said what do I want to do? I said what do you think I should do… I feel better when I am on the lower end of the TSH range. I asked her if her other patients complained of experiencing symptoms when there levels are ‘normal’ and she said her patients felt fine when they are within normal limits. I told her I have ready studies and blogs from Thyroid patients who are Euthyoid and that they still felt symptoms. She said Thyroid patients tend to blame their symptoms or everything they are feeling on their Thyroid when if it is normal range, the thyroid is not the issue so it must be something else. She said she is not familiar with any studies that say otherwise. I asked her about the lab range and the latest change from the American Association of Clinical Endocrinologist and she said this change is not been accepted and that it has been controversial for years. I also told her about my weight gain… which I understand I have been inactive but it’s because I have been so fatigued. She told me I cannot blame my thyroid. I wasn’t trying to blame my thyroid, but was just looking for support and her professional opinion. She told me she had to go because she had to see patients. The whole conversation felt like someone was trying to prove a point to me rather than give me health care and treatment. I’m very down about this. I hear conflicting information from every angle. She said I have 2 options, we could cut back to a lower dose of methiamazole or I could stop taking it. She made no effort to tell me that people will feel different when their TSH is at different points on the reference range. According to her, if you are normal… you should feel fine. Now I’m back where I started… feeling crazy and like a hypochondriac. I guess I’m going to stop taking my Tapazole because I felt better when my TSH was lower. Any words of encouragement or advice would be greatly appreciated.
Thanks in Advance
-B
My nurse at my primary care office faxed their lab results to my Endocrinologist. The problem is…each lab is using a different reference range. And both labs are using a different reference range than what I have read is the most recent range according to the American Association of Clinical Endocrinologist. In 2003, they changed TSH range to 0.3 to 3.0. My primary care’s reference range for TSH is 0.35-5.5 and my Endo’s referenance range is 0.4-4.20. The nurse from my Endocrinolgost office just called me and told me that my labs where in normal range and that it was nothing to be concerned with. I said I just started that medicine 2 weeks ago and my TSH last month was 0.39 and now it is 3.82. And depending on which reference range you are looking at I could be ‘normal’ or hypothyroid now. I tried to ask the nurse this and she said she didn’t know how each labs deteremine’s what reference range they use. I said well that’s very important since if you use the 2003 changed range I would have been ‘normal’ when my TSH was 0.39 and shouldn’t have started the Tapazole. Now, according to this new range, I am hypothyroid. I felt best when I had a lower TSH and I now I feel very tired again. They did not mention anything about testing the pituitary and just told me the rapid change in TSH was directly due to the medicine and not to be concerned. I’m very confused. 2 labs, 2 different references ranges, new 2003 reference range-each one changing the outcome of my treatment. Which range do I use? I am very frustrated. I feel all over the place. I don’t trust how I’m feeling anymore because it seems that how I’m feeling contradicts what my labs are. And this new Endo is so busy and doesn’t seem concerned about anything but the numbers. I left one Endo because of that exact reason. I just want my energy back… I just want my self back. I research and try to figure out what’s best for me but I am at a loss right now. I broke down this morning and started crying because a pair of jeans I was wearing just 2 weeks ago where very tight when I put them on. I know that’s not the end of the world but for a person who’s been athletic and active there whole life and everything seems to be spiraling out of control and i can’t seem to get a straight answer from anyone-it’s just wearing me down. Do I trust how I feel or the labs? Do I trust my Endo or my primary care? My primary care has been much more supportive and understanding then my Endo has ever been. I’ve only seen her once during this whole ‘lets see if I’m in remission escapade because she didn’t feel that any appointments where necessary. All the while my labs are bouncing all around…and I’m feeling it. At least I think I am… Help!
Thank you ALL for your suggestions! I really appreciate and consider them all. It means so much to have individuals reply who understand.
Interesting enough later that day that I had originally wrote this… my endo had someone from her office call me back again to tell me NONE of my symptoms I expressed to her are related to my thyroid since my labs are in ‘normal’ range (since earlier that day when I received the initial result I told the person in the office that I wasn’t feeling well-she must have told the Endo so I was getting a return call). Well we started talking and I expressed that I was upset that my endo was not the one calling me back after I expressed that I wasn’t feeling well and I was concerned that we were going to wait 3 months for more bloodwork and told her I was wondering why I have never had an Radioactive Iodine Uptake test done ever. She said well- that’s bc you have normal lab values and you have no problems with your thyroid and do not have a thyroid issue. I told her Lady (as politely as I could be
) I have Grave’s disease and we took me off my meds and we are trying to see if I have achieved remission. She says "Ohhhhhh I hadn’t realized that. So sure- do you want me to have her take your labs next month and do a full thyroid panel?" Just shocking that the person who called me back to make sure I knew my symptoms had NOTHING to do with my thyroid hadn’t even picked up my chart to see who she was calling or have a clue what she was telling me. And then I have to tell them to run a full thyroid panel! I’m not the Dr. I don’t know what to do here-I don’t know if it’s necessary I just figured I’d ask my Dr. if we should!! Anyway, just wanted to share that bc I find it very sad how impersonal and unprofessional and poor medical treatment can be for Grave’s patients. But I am becoming my own advocate more and more. I have read some very interesting studies today… One for example- "A literature review in 2006, whilst noting methodology issues in the consistency of Graves’ disease diagnostic criteria, found many reports about residual complaints in patients who were euthyroid after treatment with a high prevalence of anxiety disorders and bipolar disorder, as well as elevated scores on scales of anxiety, depression and psychological distress". This is just one of many pieces of evidence I have read explaining the complexities of Grave’s disease and how so many factors determine how you feel even after you have acheived remission. I just find it hard to believe a Dr. can have someone call me and tell me nothing I am feeling has anything to do with my thyroid-even if I am in remission (which I hope I am) when there is so much evidence suggesting otherwise. Guess I will just keep reading reputable sources and teaching myself bc I am learning to trust how I feel and what this disease is all about. Even it took me 5 years to put it all together… Thanks again to everyone for responding!!! Hope everyone is feeling well!
