[ewmb]

#1066281

Sandy,
I feel like you have been in my shoes for a while. I too had RAI in 09 and went hypo in September. I am also about your age and going through peri/menopause. I just had blood work done yesterday. I am now on 100 of levoxyl. My TSH wasn’t coming down much at all, still 25 last time. I go back and forth between good days and rotten days. I still cannot exercise and have too much weight on which make me uncomfortable. I know that the swings in estrogen can cause problems with hormone binding from what I’ve read and heard here. I am not so sure that all my issues are thyroid at this point. I have not had any eye involvement other than dryness. My pressure was off last year but this year it was back to normal in both eyes.

I have fibromyalgia, for 16 years, and that is not under control as I haven’t been able to really exercise. I think that menopause can cause some of the same symptoms as thyroid conditions. I am trying to learn more about that.

Maybe now that you are in normal range you can start to feel better. I am crossing my fingers that when I get my results this afternoon they will show a big move toward normal. I know that people on this board have said that until you stay in normal range you can’t really start to heal. I am looking forward to that. I am better than before the RAI but still miffed that it’s taking so long somedays. Only 6 months on replacement though so I guess I can’t complain too much.

Sounds like we are two birds of a feather. This is a good place to flock together.

Feel better,
ewmb

UPDATE: Just got my results back and I’m still in hypo range on my TSH- down to 14.317 from 25. I guess 100 isn’t enough. Glad to know I’m still getting better though.

[Bobbi]

#1066282

There is a test for T3 that could be done to check out whether or not you have a conversion problem.

[sutan351]

#1018660

I was dx with Graves and TED – Oct 06 – held off on RAI until Spring of 2009 and went Hypo Sept of 09. My TSH went as high as 84, but my labs today show a TSH of 1.13 and Free T4 of 1.4 – This is now within the normal range….YET I still feel WAY Worse than I did in 2006 when I was Hyper. Fatigue, Depression, Mental Slowness, Muscle Ache, Constipation etc. all the classic Hypo Signs. I take 125mcg of Levothyroxine daily in the morning (on an empty stomach).

Not sure if this is my NEW NORMAL that I’m 47 (older and early menopause last 2 years) or something is still off. I want to feel better and still trying to get answers. I’m targeting OD surgery in April and want to feel more stable prior to this surgery and other eye surgeries to follow.

I go to my endo this week and hope he’ll provide some answers. I know he’s not a big fan of Armour.

Has anyone else had a similar experience? Could this be a T4 to T3 conversion problem? Any Suggestions are welcome ….
I do eat a healthy/whole foods based diet and exercise 4x week – but my energy levels as I once knew them are shot.

For what it’s worth – I have seen a lot of postings from newly diagnosed – This site in INCREDIBLE. I used to disregard all the info about HYPO – never thinking I would get there…but am now well aware of the patience of this disease and where we typically end up!

Thanks – Sandy

[Ski]

#1066283

Remember that reaching normal levels, and feeling normal, can be separated by a VERY long time, months, even. We didn’t get sick overnight, and we don’t get well overnight. Your body is still healing at this point, and as a matter of fact, it is not even capable of healing until your levels are normal, and stable, so now is the time you should look for small improvements all the time. It’s not a "poof it’s gone" kind of thing. You’re walking a long path. Each step in the right direction is something to celebrate.

This is also a perfect time to start a symptom diary, because this is the point at which you dial in YOUR normal, rather than aim for any old normal, just within the normal range. If you have empirical data to show your doctor (such as, five out of the last seven days I slept for 11 hours at night and still needed a nap during the day), it’s much more persuasive than "I’m always tired." Keep the diary daily, "rate" your symptoms, give as many specifics as you’re able, and when you have them, enter your lab results as well. In this way, you and your doctor can work together to figure out exactly where you feel best.

[sutan351]

#1066284

Thanks for all the comments and good suggestions. I’m realizing that my patience must continue and just because I hit an ‘in-range’ TSH – all is not right in my world.

I saw my endo today and basically he agreed to run test on t3 and free t3, but things my symptoms I’m now experiencing are unrelated to my thyroid. I don’t agree, but am not surprised by his response and am glad he’s still willing to run additional tests. I asked him about ‘Wilson’s Syndrome’ (a t4 to t3 conversion issue – best I can understand) and he said there is no such thing. Hmmmmm

Anyway, great idea on the symptom diary and I started today. My energy level has been better the past few days and I hope to continue on this good trend. I am going to my Gyno in a few weeks and will be asking about hormone replacements to take for a brief period to address some of my symptoms. The endo was in agreement that this may be a good temporary solution.

Has anyone had experience with hormone replacements and further interference with your thyroid?

[Bobbi]

#1066285

If you go to the American Thyroid Association’s website, for their statement about the so-called "Wilson’s Syndrome" you will find that the scientific community does not support the idea that this syndrome exists.

It is very easy, in a communications media like the internet, to disseminate ideas that are not proven and, therefore,real. Yesterday, for example, the internet was busy stating that the Chief Justice of the Supreme Court was resigning. He is not. It was a hoax. But the internet would have had you believing that he was, unless you went to more authorized sources.

Be very careful what you take from websites about medical issues. A large part of what is out here on the web isn’t real, is out-dated, and, therefore, is dangerous.

[Kimberly]

#1066286

Bobbi wrote:If you go to the American Thyroid Association’s website, for their statement about the so-called "Wilson’s Syndrome" you will find that the scientific community does not support the idea that this syndrome exists.

This question actually came up in a Q&A session at our conference last fall, and the endocrinologist who fielded the question agreed with Bobbi’s comments above. However, he also stated that some individuals might not convert T4 to T3 as *efficiently* as others. That’s great that your doc is willing to run the test, though. Either it will help you pinpoint the problem…or it will give you some peace of mind that conversion is *not* the issue. You deserve to feel great…so definitely keep searching until you can find an answer!

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