[carolffva]

in reply to: TSH vs FT3 and FT4 #1180483

Hi Beach,
Thank you so much for all that you shared. I have been on a very similar journey as yours (and we are almost the same age – I just turned 55), only my journey has now spanned 15 years of ups and downs and different meds and different doctors. Being back on Synthroid after years on Armour, I can say that, for myself, Synthroid alone does not make me feel well. I also keep track of my meds and bloodwork, and almost cried a couple weekends ago when I was going through my thick medical file here at home, and I read what I was keeping notes on about how I felt ten years ago. Doesn’t sound very different from right now. I sometimes worry that I will never get on the right medication at the right dose that will keep me feeling well.

I am seeing a DO also, at the end of August, and hope that he will become my new primary care physician and will manage my thyroid issues. Over the past 15 years, I have seen four endos and some general physicians and a holistic physician too, all who have had a hand in managing my thyroid issue. Most I have had to travel over an hour to see since I live in a rural area. So now I am going to be seeing a physician who is a DO who has also spent two years doing a fellowship in integrative medicine at the University of Arizona. I am praying that with his diverse training and also because this is an integrative medical practice affiliated with a very good hospital that he will be grounded enough in general medicine yet open enough to consider the big picture and will work with me to figure this out. I can’t tell you how distressed I am that my current endo and my current primary care physician who both work at a very prominent university/medical center in our region are content to allow my levels be out of the normal range plus they also know I don’t feel well. It is unbelievable to me. My TED is also getting worse and I don’t have anywhere to turn until I get in to see this new doctor.

I agree that RAI can knock out the thyroid but I think what can be tricky, based on my reading (and I could be wrong), is that it sounds like some of us who have had RAI can possibly still have a little bit of thyroid function in there that can be a factor in trying to get the right meds and the right dose.

And thank you for the link. I am familiar with Elaine Moore and have read that article in the past but thanks for reminding me of it as I get close to my doctor’s appointment. I am trying to get all of my information and my thoughts together so that I can come across at my appointment as knowledgeable but not pushy and not like a know-it-all (because I definitely don’t know it all!).

And there was an article this week in the Wall Street Journal about thyroid options. I thought it was great to see an article on this topic in a major newspaper! Makes me hopeful!

Thank you again for all you shared. I hope that both of us will feel well soon!

Carol

[carolffva]

in reply to: Hypo and worsening TED symptoms #1180606

Hi PattiMeg,
I had RAI 15 years ago and then, just over 18 months ago, was diagnosed with TED (I had no eye issues until then). When I got my bloodwork done at the time of my diagnosis, I found out I was hypothyroid. Since then, I notice a worsening of symptoms whenever my levels are not right, in either direction, although am very lucky that I have not needed surgery or prisms yet. It sounds like you have had a very tough time and I am really sorry to hear that. I hope the additional Synthroid helps!
Carol

[carolffva]

in reply to: TSH vs FT3 and FT4 #1180480

Hi Kimberly,
Thanks for the booklet on hypothyroidism. I had not seen it before. I have asked for FT3 and FT4 to be checked for years. I had a primary care physician for quite a while who managed my thyroid issues and she was agreeable to checking more than TSH and also considering the results – although I was still on a roller coaster ride from hypo to hyper and back again. However, she decided to no longer be a primary care physician so I found a new endo in January to deal with my thyroid, and the results have not been good as I have already shared. I guess he just wanted to humor me by agreeing to get my FT3 and FT4 and even TSH checked because he apparently is not using any of those results or how I feel to make medication decisions.

I am definitely not rich but, with insurance and some cash, I can cover the cost of the testing, and it is worth it to me to get it done. Now, my task is “just” to find a doctor who will try to figure out what medication(s) will be best for me. I am hopeful the new doctor I am seeing at the end of August will be the one.

Thank you and everyone for the information that has been shared. I have a better understanding than I have had before and really appreciate it.

Carol

[carolffva]

in reply to: TSH vs FT3 and FT4 #1180478

Thanks so much for the article! I agree that I seem to be having a problem converting to FT3, and I am hoping my new doctor will take a chance and try some kind of different or additional medication to see if I can feel better and have my levels in the normal range.
Thanks again!
Carol

[carolffva]

in reply to: TSH vs FT3 and FT4 #1180476

Thanks so much, Talley. If you can find something, please let me know.

I hope you are doing well since your surgery. And, you are right, it is sad and also very hard to realize that some of us do feel like we are fighting with our doctors and, for me, it has been going on for years and years. We are more than just test results. If the doctors could see all the thyroid forums on the internet with all the questions raised and with so many patients not feeling well, they would realize that there are not simple answers (like TSH testing only and Synthroid only) for quite a few.

Thanks again.
Carol

[carolffva]

in reply to: TSH vs FT3 and FT4 #1180474

Thank you so much for the additional information!

This sentence you wrote really helps: “The point of all this stuff about the Graves’ antibodies suppressing TSH is that it makes determining dosages of methimazole or replacement for a Graves’ patient by TSH alone a bad deal.”

It seems especially pertinent to me since my TRAb level is currently elevated. When I tried to talk to my current endo about all this, he said “lots of people have low FT3” and he would not entertain even a trial of Cytomel. I couldn’t believe it, especially because my levels are not within the normal range! I am just asking to have levels in the normal range.

Right after RAI, I was Synthroid and then switched to Levoxyl without feeling good – for about 5 years – and then was on Armour for about 8-9 years and just could not find a dose that worked for me (I did better on Armour, though, before Armour was off the market and then back on, reformulated). I was all over the place with, especially after the reformulation, and moved from hypo to hyper and back to hypo time and time again. So now I am on Synthroid but it is not working for me either. I would like the chance to try an addition of Cytomel to see if it helps me out but you would think, judging from the reaction of my current endo, that I am asking for the moon! Hence, I am going to yet another new doctor.

If you or anyone finds the article/official document that says that doctors should not use TSH for decisions for Graves patients but FT3 and FT4 instead, I would love to have it. Maybe that would solve my endless trouble of doctors focusing on TSH only, and only testing FT4 and FT3 to humor me, and then not considering the results.

Thank you so much for all of this information you have shared. I have read and read and read on Graves Disease and TED over the years, but it is complicated and my story/medical situation keeps changing. What you have shared has cleared up some of the jumbled thoughts I have had. And I realize you are not a doctor, and I take your information in that spirit. And I greatly appreciate it.

Carol

[carolffva]

in reply to: TSH vs FT3 and FT4 #1180471

Hi Raspberry and thank you for your reply! I did a quick read and it looks like those two links focus on patients who took antithyroid drugs which I did not do. Am I misunderstanding?

And I agree, in theory, on changing doctors ASAP when things aren’t going well. Unfortunately, I live in a rural area and have to travel at least an hour to get to a doctor, and there aren’t very many good ones, even when I travel. I saw a new endocrinologist at a hospital with a good reputation (the 4th one I have seen there over the years, and then I have seen other physicians who have handled my thyroid meds from time to time). At my first appointment with him in January 2013, he told me he would look at my FT3, FT4, and TSH and consider a variety of meds and also consider how I am feeling instead of strictly looking at bloodwork results. I was thrilled! However, what has happened is he seems to be disregarding my bloodwork plus how I am feeling! – most recent results a month ago showed a low FT3 (2.0 – range: 2.3 to 4.2), OK FT4 although getting close to being high (1.41. – range: .7 to 1.5), and low TSH (.35 – range: .45 to 4.5). And he said to continue my meds as they are, even though I am not feeling well, and I am worried these levels aren’t going to help my thyroid eye disease. It is so frustrating. I wish so much I lived near some good doctors. I am hoping the new one I am seeing at the end of August will be good. And listen.

Enough whining, though! Back to the articles – am I understanding the articles correctly, and do you think they apply to me even though I went straight from a GD diagnosis to RAI in a matter of weeks? And can you explain more about what you mentioned about the connection of TSH antibodies and TED? And does this have anything to do with the Thyrotropin Receptor, AB blood test (TRAb)? I had that test done in March when I saw my neuro-ophthalmologist and my level was 6.21 (range: 0.00 to 1.75). My endocrinologist just said this means I have Graves Disease.

Thank you so, so much for your time and help!
Carol

[carolffva]

in reply to: Hypo Might Raise TED Risk? #1173897

Hi everyone,
I just found this forum today and the question about hypo raising TED risk caught my eye. My story: I am 54 years old and was diagnosed with Grave’s over 15 years ago. I had RAI immediately and, since then, have been on a roller coaster ride with my thyroid levels, spending more time than I have liked being either hypo or hyper although my levels been better, and I have felt better, since I started on Armour Thyroid.

Last summer, after 15 years of NO eye symptoms at all, I developed TED. I am not a smoker but was hypothyroid at the time – unknown to me.

Although I am new to this forum, I read everything I can read on Grave’s and RAI and TED and have for years, and have read many people’s stories and what I think is that anything can happen! TED can happen if you are hypo or hyper, if you have had RAI or not. And, judging from the number of people who post here and on other thyroid forums, thyroid problems are challenging to figure out, and many of us don’t feel well, and many seem to have doctors who don’t know as much as we do about our thyroid disease.

For me, Grave’s Disease is a piece of cake compared to TED. And I wish I had tried the meds before RAI, but that’s just me, and what is done is done.

Carol

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