[carolffva]

#1060115

Hi Kimberly and everyone,
I am new here – I think I posted just once before a while back. My story, in brief: I am 55 years old. GD was diagnosed in 1998 and then I had RAI right after that. Then, about 18 months ago, I was diagnosed with Thyroid Eye Disease. It was very disheartening and scary to get TED after all those years with absolutely no eye symptoms.

Since my initial diagnosis of GD, especially after about 5 years post-RAI, I have been on a roller coaster ride with my meds, trying to feel better, with my levels all over the place. I have been on several different meds and all kinds of dosages, and just can’t seem to stay stable/in a normal range for long, and I often don’t feel well. My 15 year GD journey has involved some doctor switching, and I am about to see another new doctor in August.

I read a post on this forum not too long ago and, Kimberly, I think you wrote it and I think it applies to someone in my situation, and it said:

” Keep in mind that T3/T4 are “point in time” measurements that show where your levels are at that moment. The TSH number reflects a “running average” of where our actual thyroid hormone levels have been and can therefore lag behind changes in T3/T4. Antibody activity is also believed to affect TSH levels.The key right now is to make sure your doc is aware of the importance of basing dosing decisions on Free T4 and T3, and not TSH. Once T3/T4 become both normal *and* stable, the TSH should eventually catch up.”

I have read also on other thyroid sites that it is important to dose meds based on FT3 and FT4, but my current doctors focus solely on TSH. Is there research out there to support the dosing based on FT3 and FT4? I want to have that available in case my new doctor also believes that meds should be dosed based on TSH.

Thank you, and thank you for this forum!
Carol

[Raspberry]

#1180470

Hi Carol, I’m so sorry you are dealing with this especially so unexpectedly at a late date. Here’s a couple of links that refer to Graves’ antibodies affecting the TSH:
First study about antibodies and TSH
and
and another about TSH receptor in the pituitary being suppressed by Graves’ antibodies

My advice is that if your new endo also insists on dosing by TSH and refuses to look at or acknowledge any validity to the above studies, just leave, don’t try and work with them. I’ve made the mistake of staying too long myself, and trust me if they aren’t putting in the time to stay up on the latest one patient isn’t likely to make them. Your case will be challenging as well because while many endos acknowledge now that TSH can remain suppressed in the initial months of treatment, what you have is suppression years after…which makes sense given the connection of the TSH antibodies and TED. Good luck!

[carolffva]

#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

[Raspberry]

#1180472

Hi Carol, I’m glad the articles will be helpful! I’ll do my best to answer your questions, but I may stray slightly close to this board’s rules in doing so. I guess Kimberly will let me know if I go over the line. We aren’t doctors here and aren’t supposed to give medical advice. So take the following in the spirit of me sharing what I’ve learned…

Most studies about Graves’ antibodies are done on people who are in the first active phase who still have their thyroids and haven’t had RAI or a thyroidectomy yet. Still Graves’ is for life, and it is possible to continue to have antibody activity at any time for the rest of your life and for it to cause problems. We have a member here Shirley who had onset of TED fifty years after her thyroidectomy. So even though you aren’t on methimazole the studies about the Graves’ antibodies that show that they suppress TSH still apply. That second link about the rats is inarguable to me. They injected rats with antibodies from people with Graves’ and people without Graves’. The first set of rats developed reduced TSH, so there ya go.

About the TED and TSH antibodies (or TRab) – you can search on this board and Google and easily find information about how high TRab or TSI (which is another measure of Graves’ antibody activity) is linked to increased TED problems. Your TRab value indicates significant antibody activity which would stand to reason given the new TED you are dealing with. The million dollar question is why did your antibodies get stirred up again in the first place….nobody knows for sure. One avenue I research for my own understanding is looking to see what causes flares of any autoimmune disease – after all GD is just another autoimmune disease in the end.

About your FT3 it is low while your FT4 is relatively high – you might find value in researching “FT4 to FT3 conversion” problems and discussing with your doctor supplementing with Cytomel (synthetic T3) or looking into natural thyroid hormone like Armour which naturally contains T3 with T4.

Good luck with the new endo – I hear you about how hard it is. It’s sobering to have a disease where you have to do so much self-education and advocation.

[Raspberry]

#1180473

Jeeesh I almost lost the forest for the trees. 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. The TSH is untrustworthy because of this extra factor potentially monkeying with it. Now if your antibodies are low the TSH begins to become more useful. There’s some official document not sure where that actually says endo’s should not use TSH for decisions for Graves patients but FT4/FT3 instead.

[carolffva]

#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

[Talley]

#1180475

Carol – I will do some research today looking for an article…I had my TT just 6 weeks ago and my doctor wants to cut my Synthroid dose based on my TSH even though my T4 is in the normal range – and going towards hypo.

I think they also need to listen to the patient – I know what hyper feels and looks like…I no longer have tremors, heart palpatations, night sweats, weight loss, hair loss…I feel “normal” for the first time in a year and yet he wants to reduce my dosage – I’m concerned about going hypo.

I am happy to have had my thyroid removed after hearing they found cancer on it, but I also am sad to now be in a position of needing to “fight” with my endo to listen to me.
Talley

[carolffva]

#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

[Raspberry]

#1180477

Hi Carol, wow you have been in this fight a long time! That’s a shame about the Armour issues – I’ve read that it has a somewhat higher ratio of T3 to T4 than is comfortable for many but works great for some. I hope your new endo works out for you. I found another link, similar to the ones before but it might be useful – the commentary section at the end provides a nice summary of the issues. Still at the end of the day your FT4 is high up in the range so it’s not crazy for the TSH to be lower….seems the FT3 conversion issue is the key.

Long-term TSH suppression in Graves’

[carolffva]

#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

[Kimberly]

#1180479

Hello – I wish I had some better research regarding T3/T4 testing and long-term management of hypothyroidism, but most of the published info has to do with patients either on anti-thyroid drugs or recently treated via RAI. Many patients do fine with TSH testing alone, but personally, if I was in your situation and not feeling my best, I would insist on the additional testing. It’s inexpensive, so if insurance is the issue, you can get Free T4 and T3 testing done and pay out of pocket. (The antibody testing, though, is much more expensive).

The American Thyroid Association recently updated its guidelines on treatment of hypothyroidism, and one change, is that you are *starting* to see the door open for T3/T4 combination therapy (see page 17). Obviously, you need a doctor who will take your questions and concerns seriously – but in the meantime, this document might be a good starting point for getting the discussion going with your current doctor.

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://thyroid.org/wp-content/uploads/patients/brochures/Hypothyroidism_web_booklet.pdf

Take care!

[carolffva]

#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

[beach45]

#1180481

Hello Carolffva,

I thought maybe this link might help out regarding TSH testing post RAI. I know that we are supposed to post only certain links and I thought since this was a British study referred to, that it would be okay; if not I can remove it Kimberly:…..Please see link below to British study provided by Kimberly….

I had RAI over a year ago after two years of no remission and up and down on antithyroid drugs. I’m 54 now and this Graves ordeal started at 51. I’ve studied this Graves/thyroid issue to death reading medical journals, talking with different doctors and hearing other patients on this forum and other sites who have had successes. It’s definitely not a one size fits all.

I do know from experience with this that post RAI that my TSH tends to be low and my FT3 and FT4 is what seems to be actually the tests that coincide with how I feel; because pre antithyroid drugs my TSH was very low and I felt very hyperthyroid; now with a very low TSH yet lower FT4 and FT3 my body feels very hypothyroid. So judging how I am feeling post RAI I feel many patients maybe cannot be dosed by just TSH alone. Only from how I see my ups and downs as I’ve charted my lab work, medications starting with ATDs and now thyroid hormone, and symptoms. I am seeing a pattern too for other women living by me who are post RAI or TT for Graves that they are never feeling right and their doctors are only dosing by TSH. I will say too though when you are adding in T3 whether it is from DTE or Cytomel, your TSH can tend to be lower and FT4 lower too and having to be careful to find a balance there with both FT3 and FT4. On Synthroid or Generic T4, my FT4 was always higher, FT3 very low, and yet my TSH was still a bit lower , yet not as low as when I added in T3.

I am fortunate I have a newer MD, a DO, who is working with checking both FT4, FT3 (also TSH) and listening to my symptoms. I have to admit though I have not had much success as of yet; tried Synthroid, no good; Generic, no good, Armour, gained weight and other problems, T3/T4 compound started to lose yet extreme joint pain some wheezing and not much energy, tried Nature Thyroid gained some on 2 grains yet energy levels were better, and now on a combo NDT and Generic and still gaining/bloated yet no joint pain or wheezing yet drained. I cannot get anything right. I know what to do with not taking calcium or iron or anything that would affect absorption 4 hours either way from taking the thyroid hormone yet levels are nowhere near where I need to be; I will say on the compound I did start to lose a little weight. I think if I got a just little more T3/T4 maybe with my levels coming up a little more I’d feel less joint pain and more energy. I’m fortunate to have a very good compounding pharmacy in my area which is very reliable and been here for years as you have to be careful with that. I’ve found I had allergies to fillers in thyroid medication too which is a problem. I believe there is another study in the Washington, DC area on timed released T3. I listen to some people on other sites saying why NDT does not work right yet my doctors do not believe in the saliva cortisol testing or RT3 some of these people recommend and I’m limited in my area of doctors so I work with things best I can. I move forward with caution though as there is a lot of misinformation out there and people have to work with their doctor(s)advising them too as what I have experienced. There have been cases of people who got sick on taking too much NDT. I like to go with what my doctor agrees to yet partner with him on this also to get me to where I need to be. He moves with caution on incorporating T3 into my thryoid mix. I don’t take supplements on my own without discussing with my doctor first. I don’t know sometimes for some people if there is an easy answer. I do know though that going by the TSH alone for me at this point doesn’t help much with getting me to wellness. I do know my TPO antibodies rise on NDT which can be common and is not a good thing. I also know that from my 3 years of charting my levels I feel best when my FT3 and FT4 are mid range to higher; that’s just me; we are still working on that though.

I appreciate the hypothyroid information from Kimberly re: ATA updated guidelines. I do know even though I did not have my thyroid taken out (like ATA refers to on that page 17) that with the RAI my endocrinologist told me I basically have no functioning thyroid that it is dead and I could see from my numbers on Synthroid alone originally after RAI I had a T4 to T3 conversion problem.

Good luck with your new doctor. This is not easy for some of us I am finding out. I’m determined to find the right thyroid hormone and dosage hopefully and it’s been quite a challenge and difficult when you don’t feel right a lot of the time.

Beach

[carolffva]

#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

[beach45]

#1180484

Hi Carol,

Your welcome as yes we have similar journeys; I also have moderate TED; I found for myself when my FT3 especially is going lower in the range, my eyes bother me more. I’m being checked every 6 months for that. Thyroid eye doctor says that next 3-5 years the antibodies are most active and why he needs to check me. He advised I stick with an endocrinologist yet my endocrinologist told me after being with him 1 year that I could now have my resulting hypothyroid condition be treated moving forward by my primary care physician. Also that many post RAI for Graves are more susceptible some time afterwards to developing diabetes. I’m concerned over that as there were some diabetic type issues on my father’s side of the family.

I was considered “slightly hyperthyroid” for years since my 30s off and on. I never checked into that. I never questioned it! I had a CT scan with iodine contrast in it in 2009 when I had my left ovarian cyst scanned which they thought was possibly a tumor yet turned out not to be; I believe that iodine is what triggered my Graves/hyperthyroid. I read recently in a medical article that this happened to someone and they said do not give that iodine which is used in scans to an already hyperthyroid person; and another person whose son was hyperthyroid and even with medical professionals knowing he was hyperthyroid and he almost died having the iodine contrast in the scan which almost prompted a storm; as I mentioned this is documented about this contrast media that contains iodine which is associated with an increased risk of thyroid dysfunction. Well the information is out there when searched.

My TSH in 2007 was 0.018 and at that time per a nurse practitioner I know well who said that my primary should have seen I was hyperthyroid and done something about it. I never confronted him. Now with my problem I confront every single doctor and I don’t care if they get annoyed because it is my body and I have to get to wellness so I can function again as a normal human being so I can go back to work; This has all been nonsense to me and it is time that some doctor gets me back to where I need to be; which every person is entitled to. I feel if I had been treated better back when, I believe I could have probably gone into remission. Instead I had to almost storm in Spring 2010; I was very sick. Now I’m very sick in another way. Even my last endocrinologist said you are trading one problem for another! A very honest man! I’m losing a lot of faith in the medical community in general and now they made me fat and not functioning properly instead of working harder at ATDs back 2010 through May 2012 to get me stabilized and into remission, and maybe even trying such methods as block and replace. I feel I wasted 2 years on ATDs and instead gained a ton of weight which I have not lost yet and another doctor at a weight loss seminar recently said I probably now have metabolic syndrome; I laugh because the post RAI weight I lost (7 lbs) yet not the weight gained on ATDs; which all the diet and exercise I do makes no difference and getting thyroid levels right for me is most important yet there is more that has to be done; and sometimes the little bit of T3 alone doesn’t always do the trick I am finding.

I already seen what has happened to a couple of women here post RAI and TT and that they have problems with diabetes and a bunch of other health problems they are medications for. Sure the T4 is not working for them and they stay heavier and thus when we weigh more in time we are more prone to develop other health problems in time and most do not complain nor know that if their thyroid was working better for them and not based on TSH alone, they could also feel better. I see for myself on T3 that I am not fogged and I have more energy and I have not had any heart issues with it. In fact I had more heart palps when I was on T4 medication alone.

Yes maybe T4 medication works for some. Yes the WSJ article is great and I printed it for my DO although I don’t have to tell him as he already works outside the box; with reservation too of course. I bet you will do great with this new DO. You’ve been living this a very long time and I pray for you that after all this time you start getting the proper treatment to get you to wellness.

I just feel not enough attention is placed on this thyroid business and doctors are not up on it as much as they should be; yet there are great improvements being made recently by people who care as I see and for myself I am not going to settle for having a whole lot of other symptoms and health problems due to being on medication that is not working right for me because some doctor says that is what you have to do or take! I listen to women here in my town who had RAI and afraid to confront their doctors that T4 alone is not working for them. We are supposed to be partnering with our doctors to help get us to wellness. Your new doctor sounds great!

I’m sorry your TED is getting worse. I hope that gets resolved quick for you with proper treatment. That scares me the most as I know I am not out of the woods with that. Yet for me I will say that my TED seemed to actually improve after RAI. That doesn’t mean things will stay stable though as why my thyroid eye doctor will be checking me now 3-5 years more now post RAI.

I agree what you say that RAI can leave some thyroid function in place with tissue still being there and maybe is a problem. A women here who had RAI I believe about 7 years ago is constantly struggling with feeling well and a doctor who also had RAI told her that thyroid could take some time to die off completely and why levels cannot ever be completely stable. His theory though. For me I just believe it is not a one size fits all as some here have had much success post RAI and going on T4 and you probably don’t hear from them anymore or I know one of my husband’s family members who had RAI and on Synthroid over 20 years, feels great, looks great, no other health problems….is it that if the severity is worse going into it makes a difference with how treatment will work post RAI or also we are all wired differently so to speak as nothing has been easy for me in past with medications or when I’ve gotten sick as I always get hit very hard and have more complex issues than some others. That same doctor I mention here who had RAI said he also believed that the worse the circumstances prior, the more difficult post RAI.

Yet I believe you will get there and myself too! Being proactive by writing here for input and getting a new doctor and in time things will get better is what I believe. Of course sometimes even with the best treatment things don’t settle down overnight. I have so many books on Thyroid and I truly enjoy the book “The Thyroid Solution” by Ridha Arem, MD/endocrinologist as he is on FB also.

Me too I live in an area where I have to travel for the best and I might end up in the Atlanta area at some point to work with a group who will help me with metabolism issues; yet first I have to get my numbers into the range that is best for me; unfortunately, one step at a time. My last endo was 1-1/2 hours one way going every month for a year; had total 4 endocrinologists, only one was open minded and left my state and I loved her!

Better days are coming. There are many of people out there who have similar issues yet sometimes are also afraid to speak up. I just know from talking to people here in my area who believe they are not getting the best care for their hypothyroid condition. You’ll get there!

Take care; best of luck and please keep us posted with your new DO visit.

Beach

[Author]

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