[Nicholas]

#1018080

Hello everyone,

New to this group, glad to have found you. I have a couple of questions for all of you experts.

A bit of history first. I am a male 42 years old. Have been dealing with graves for almost 5 years. At the beginning medicaton helped a little (PTU and TAP) then it was not working. I ended up with RAI a couple of years ago. Then I was stable (no hyper, nor hypo) for almost a year and I become hyper again last (Sep 2010). I had another RAI (larger dose) this time on Nov 2010 and for 3 more months I was hyper until recently.

Now my labs 3 weeks ago (12 weeks post RAI) showed for the first time TSH of 148 (Ref 0.40-4.5) and FT4 0.3 (Ref 0.80-1.76). So they discontinued Tap (I was on 10mg/day) and put me on Synthroid (first 25mcg, then 50mcg). I have been feeling a bit hyper since. I am back on beta blockers.

So how does this work? Based on your experience anyway. How long does it take to get stable? I expect ups and downs for a while. Yesterday they tested my TSH again now it is 120 (3 weeks on synthroid). I had more labs done with another Doc and waiting for the results. No changes in weight yet, but feel unwell. Night sweats, feeling cold, heart issues, and lots of belly sounds in the night. Early AM is the worst. Feeling really sick, then during the day it gets better.

Any help will be appreciated. What other tests should I request?

Thank you

[Bobbi]

#1062582

It looks like your doctor is gradually increasing your replacement hormone, rather than jumping in with an educated guess of where you’ll "land." So it might take longer than it took others of us. Typically, we get a dose change and have to wait a minimum of six weeks for additional blood tests to determine how that dose "took." There is a lag time involved between the dose change and the body actually "registering" the dose change. Waiting six weeks to three months for the blood test check helps to assure that you won’t go onto a hormonal roller coaster, too high, too low, too high again. There are benefits to gradually increasing the replacement hormone dose, but one drawback is that y ou will stay in hypo territory a bit longer than if the higher dose was guessed at.

Typically, though, it takes months AT normal levels of hormone for your body to heal, so you should look for gradual improvements over time, and not expect that just "getting to" normal levels of thyroid will make you feel well all at once.

I hope you notice lots of little improvements, and soon.

[Nicholas]

#1062583

Thank you for the reply.

I am also wondering if there is a possibility of a thyroid dump at this stage. Does it really happen when you reach the hypo stage after RAI? Another way of seeing this, how do they know for certain the thyroid is non-functioning. One TSH reading does not tell the whole story. What if it is still active and keeps dumping periodically. I just want to be prepared.

Thanks

[Ski]

#1062584

This long after RAI, the dumping should not be an issue, at least under the strict definition used during the first couple of weeks after RAI.

When you get a TSH level, you’re actually seeing a "running average" figure that spans your blood levels for at least several weeks ~ that’s why it takes so long to get a good reading after adjusting a dose of replacement ~ so a very high TSH is usually a very good indicator of where you stand right now.

Once you find a good level of replacement hormone, it is possible for your needs to change, due to various factors (age, weight, activity level, for instance), so continuing blood tests are always a good idea. Still, once we’ve hit a good level for us, typically then it’s only recommended that we get tested once a year, unless we’re feeling dramatic symptoms. It is not likely that your levels would ever spike out-of-control again, with the limited thyroid tissue (if any) remaining in your body after those two RAI treatments.

One more thing to point out ~ when we change a dose level, we can experience a couple of weeks where we feel something of a teeter-totter, up one minute and down the next, but after the first few weeks on a new dose, TYPICALLY things settle down and it’s easier to tell whether you REALLY feel up or down, in terms of thyroid hormone levels. Even then, blood tests are the gold standard for figuring out what is really going on.

While things are fluctuating, it might be wise to ask for a T4 level as well, because it’s a more immediate figure and may keep you from going too far afield following the TSH level while it’s still "settling in."

[Nicholas]

#1062585

Thank you both for your insights.

When I was hyper they usually tested FT4 and TSH. Once in a while they also tested FT3. In terms of blood tests going forward (and at least until I am stable on a fixed synthroid dose), now that I am officially a hypo, what is a better testing indicator? The Free T4 (or Free T3) or the Total T4 (or Total T3) together with the TSH test? That way I can insist on the same types of tests.

Thank you so much

[Ski]

#1062586

T3 levels are volatile ~ they change as your body converts (or doesn’t convert) T4 to T3, and it can be different depending on the time of day you are tested and what you’ve been doing. Chronically high or low levels can be helpful to know about, but it’s tough to manage your overall condition using T3 levels. FT4 is a good counterpart to TSH because it is more immediate than TSH, but not as capricious as FT3.

[Nicholas]

#1062587

Quick update !!

Still very Hypo (over three weeks in Synthroid at 50 mcg). My most recent labs showed TSH > 150 (Ref 0.40-4.5) and FT4 0.4 (Ref 0.80-1.76). How long it took others to move closer to a normal range?

I do not have the usual symptoms suggested by other people. My weight is still stable (maybe I have gained 1-2 lb over the last month). My creatinine and BUN are elevated (above the normal range) but the endo did not seem very concerned.

I still get some hyper symptoms though (fast heart rate, night sweats etc.)

I can’t wait for this baby to get stable ” title=”Smile” />

[susanne13]

#1062588

Nicholas,
Although I know everyone is different, when I was HYPO after getting a thyroidectomy, I took about a month to get back on track and it seemed like after every blood test, my endo was still increasing my Synthroid. I also still had weird HYPER symptoms (anxiety, hair loss) even though my levels were HYPO. The thyroid can so such ODD things!! Good luck with everything!!!
-Susanne

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