[lauren]

#1018840

Hi everyone,

Just a quick one.
Im how Hypo after RAI , am on 135 mcg Thyroxine per day.
Had Graves for over 20 years.
Am having weekly blood tests.
Three weeks ago tsh was 2.3 ( range 0.4 to 4.00)
then following week tsh was 1.2
then last week 0.58

Endo thinks im okay as Ive been in normal range for five months.
Havnt got my ft4 or ft3 to hand just now but FT3 is sitting around 4.5 , ft4 going between 14 and 16. So they are fine.
Whats going on do you think? should i be concerned.
Do I feel well. No, its so up and down. Have more physical energy but still intermittant terrible anxiety and depression.
Starting to think I will never feel like my normal/ balanced happy self ever again!!!! Maybe the mental breakdown Ive had was nothing to do with the Graves after all. Maybe I will be like this for the rest of my life. Its sooooooo hard to be positive.

Please shed some light on all this for me. Just when i thought i could see the light.

thanks

Lauren
Ps i have blood tests same time very week. same conditions so to speak.

[elf]

#1067422

TSH for post-RAI and post-TT people CAN be strange. It can be very low, hyper-looking, or very high. If you are lucky to have a doctor who understands it (doses by FT3 and FT4, not TSH), you are sailing then.

I have had a very low TSH for more than a year now (like 0.01). My free Ts are in the middle of their ranges, I feel fine and healthy. My Primary doctor checks only free Ts. He told me that they are aware that TSH can be off for post-RAI people. I am taking 100mcg of Synthroid. If, however, I had headaches, (I don’t), he would recommend me to see an endo. But if I wanted to check out my pituitary anyway, he could refer me to an endo anyways.

Ski here had a similar problem of hyper-looking TSH a year or two after RAI, and the reason was that not all the tissue was removed, so she had to take another dose of RAI. 20 years later, though, I think you are not facing the same problem.

[Bobbi]

#1067423

I’m really sorry you are having such a rough time of things. Having had Graves for 20 years does, most likely, add to the the length of time it will take for your body to fully recover, though. Just getting to normal levels of thyroid consistently does not, unfortunately, magically make us feel great all at once. Our bodies need time to heal, and the longer we were battered by aberrant thyroid levels, the longer it can take for things to come right.

In addition, there are always going to be variations, typically, in actual TSH readings over the years. I don’t know why that is — just that it is. Perhaps it has to do with activity levels, or diet or medications or vitamims, supplements…. (are you eating something that interferes with the replacement, or have you had a medication removed/added that interferes with the meds, even slightly) etc. etc. etc. TSH does not, ever, in my experience hit one single number in the range, all the time. I sometimes get close to the same number consistently, but there is "some" variability. There was more early on in my treatment than there is now, but even yet, there can be occasional bumps.

How we feel is not necessarily reflected in the TSH. Think about it: before you got Graves, there were periods of time when you were constipated, nervous, sleepless, etc. These symptoms were not necessarily caused by Graves, or thyroid levels. Once we get Graves, we tend to blame thyroid levels for everything. There was a period of time when I was getting rather frequent blood tests, because I was so sure how I felt was related to thyroid. But what I discovered was that I absolutely could not tell, with any consistency, where my levels were. There were times when I felt wonderful (truly) and had a routine blood test that showed I was hypo (12 TSH). I could usually pick up on hyper thyroid levels much better — but not always. I have related here on the board the fact that I have gone in for tests thinking I was hyper/hypo/fine and had the test show a TSH of 2.0. We cannot always tell. And we cannot necessarily fix how we feel by changing our replacement dose.

When I’ve gone to my doctor feeling punk, the first thing I check is my thyroid levels. It is so supremely easy to fix if the thyroid levels are off. So, I check those first. BUt if I hear from my doctor "It’s not your thyroid," I then immediately ask, "OK. Then what IS it?? What do we have to check next." Sometimes, I need additional tests. Sometimes I need to make changes in my life style — add exercise, or change the diet, etc. One time, I needed surgery for a completely unrelated condition. And once that was done I was amazed at how much better I felt, over all.

What helped me was to watch for "improvement" over time. I tried to focus on even the smallest of steps towards "better," rather than looking for "normal." By putting my focus on positive changes, it helped me to be a bit more patient with the whole, slow process. If you can try making a list of improvements, perhaps that will help you as well. I hope so.

[Author]

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