[Starvee44]

#1018507

Hello everybody, I hope someone can give me some advice… I’ll try to keep it as concise as possible:

After walking/crawling/pacing around for 6 years before getting diagnosed at 21 with graves’ disease, and after 4 years of ups and downs with medications, I finally got my thyroid totally removed via surgery on february 2, 2010. Since then, i’ve been taking 200 µg of T4, a dosage normally more than enough for someone my weight (68kg – 150 pounds).

I finally reached stability (hallelujah ” title=”Very Happy” /> ), and generally feel fine: starting to pick up my life again, see friends, play my guitar again, read, play sports, go out, do stuff, etc.

However, though not as tired as periods in the past, I have this underlying tiredness that I cannot shake of. It’s not debilitating me, but it IS keeping me from a full life.

Short recent history: after having reached stability in january 2009 with medication, I went more and more hyper again starting from april 2009 which lasted for several months, then hypo for several months untill january 2010 which was a month were I felt good – not tired at all. Then I had surgery (february 2, 2010), kept feeling good for several days afterwards, untill febraury 5 when I started to feel tired.

One week before surgery I had to stop all medication and take concentrated iodine (to lessen the bloodflow to the thyroid = easier for operating on), and started talking the replacement hormone on february 5th: 200 µg T4, a dosage which has not changed since then.

Pre-op bloodtest (just before surgery) (when I was feeling as I should be – good, healthy, fit):
FT4 15.3 U/l
TSH 0.35 U/l

Though since then being more than normally tired and coldish, bloodtest two weeks after surgery showed high normal T4:
FT4 22.0 pmol/L (ref: 12.0-22.0)
TSH -0.02 µU/ml (ref: 0.27-4.20)

So they told me things would get better, and I think they indeed did somewhat, but I’m still not happy with my energy levels.

So I went for another bloodtest, april 1, 2010:
FT4 19.2 pmol/L(ref: 9.0-19.0) (other lab, other ref values ” title=”Confused” /> …)
FT3 4.3 pmol/L (ref: 3.4-6.3)
TSH -0.10 mIU/L (ref: 0.30-4.00)

My endocrinologist refuses to acknowledge my complaints of tirednes, coldishness, and a slower heartrate than i would normally have (in rest, when I’m good, I have about 60, now it’s about 50…).

First she said I had to wait and see, wait and see, and now, she wants to LOWER the dosage of T4 from 200 µg to 185, (because I’m at the upper limit of T4), even though I have no signs/symptoms at all of (sublicnial?) hyperthyroidism, on the contrary…

Note: the lab she works with, uses upper T4 reference range values of 19, while the lab of my hospital uses 22… (How arbitrary is that!?)

Another note I would like to make: in the periods I was feeling good/stable, my lab values generally where about 15 for T4 and 5-5.5 for T3. So now, when I’m only taking T4, my T4 levels are higher than before surgery, and my T3 values lower. Could that be the reason for my tiredness?

A doctor friend of ours listened to my case, and said he had seen several hypothyroid patients who where still tired, had "normal" lab results, but when he added a little T3, they totally opened up…
So what he advised was: "lower your T4 from 200 µg to 150 µg, and add 25 µg of T4+T3 medication… And then see what happens."

I also want to mention that I’m in quite good shape: I try to do sports regularly (though not excessively) or go walking, have quite a regular day-night rhythm (though I need 10 hours of sleep and several power-naps), eat healthy and moderately, don’t smoke, … and am overall healthy. (But tired!)

My endocrinologist persists that it cannot be from the thyroid, that it is either "mental" or from something else, but I’ve done a full bloodtest and everyhting else was fine, I honestly don’t know what it can be other than thyroid (the tiredness feels just the same as during the medication years, when I was not at a good dosage: tired, but no apparent reason to be tired, on the contrary…)

Does anyone have some experience with this?

Could I be one of those few whose body doens’t chaneg T4 into T3 sufficiently anymore (possibly due to my long history of Graves’ disease, undiagnosed + 4 years ups and downs with medications)? And should I thus try what my doctor friend said (add a little bit of T3, and see what it does)?

Should I lower my T4 to 185 as my endocrinologist suggests?

Or should I try to raise it with like 25 µg?

I honestly am so glad I’m finally stable, and have a future again, doing stuff again, but I seriously need to get rid of this tiredness. I do feel that it’s the last thing I have to take care of.

Thanks, sorry for the long story!
Starvee44

[Kimberly]

#1065350

Hello – Hopefully, someone who has had a thyroidectomy can jump in here with their experiences. It sounds like you have travelled quite a difficult road with your Graves’, so it’s possible your body is still going through the healing process. Here are a few other thoughts…

I tend to feel run down when my levels are falling – even when they are within the wide range of “normal”. You didn’t list prior values for FT3, but is it possible that your levels have fallen over time? My GP told me that our bodies tend to get used to running at one level, and when things change dramatically, that can require an adjustment period…even if our levels are still within the “normal” range.

Also, the “normal” range is fairly wide. It’s possible that while your FT3 is in the “normal” range, this might not be the OPTIMAL point for you.

It would also be worth getting a complete physical, just to rule out any other issues besides your thyroid. Hopefully, you have a GP who would be willing to work with you to get to the bottom of your fatigue issues.

We don’t advise going against a doctor’s dosing recommendation. However, you should definitely have an open dialog with your doctor if his/her recommendation seems to be going against your symptoms. It would be helpful to come armed with a symptom diary of specific issues you are having. For example, the fact that you are sleeping 10 hours a day and are still tired is good information.

As for adding T3, a few patients swear by this. However, there were a couple of patients at our last conference who had tried T3 and had swung seriously back over to the hypER side…so they were dealing with the frustration of trying to get their levels stabilized again. Adding T3 to your daily regimen is something that needs to be done under your own doctor’s close scrutiny and continually monitored.

Best of luck – definitely keep us posted!

[Starvee44]

#1065351

Hey Kimberly, thanks for your thoughts.

Kimberly wrote:You didn’t list prior values for FT3, but is it possible that your levels have fallen over time?

Only my GP tended to check my FT3 values, my endocrinologist only checked TSH and FT4. But as I stated,

Starvee44 wrote:in the periods I was feeling good/stable, my lab values generally where about 15 for T4 and 5-5.5 for T3. So now, when I’m only taking T4, my T4 levels are higher than before surgery, and my T3 values lower.

Kimberly wrote:As for adding T3, a few patients swear by this. However, there were a couple of patients at our last conference who had tried T3 and had swung seriously back over to the hypER side…

But how can one make the FT3 higher, without adding T3 to your medications? In any case, the proposal was only to add a minor amount: instead of 200 µg T4, lower it to 150 µg T4 and add 25 µg of T4+T3 medication… An interesting thought. In any case, I have another bloodtest planned next week, and will then discuss mattters with my Gp and endocrinologist. The latter unfortunately already has a pattern of waving away my complaints, so I tend to write her a consice letter, with all the info and questions I got.

Kimberly wrote:It would also be worth getting a complete physical, just to rule out any other issues besides your thyroid.

I already had a full physical: nothing was wrong, except a low pulse (lower fifties)…

Thanks again!

[Kimberly]

#1065352

Starvee44 wrote: But how can one make the FT3 higher, without adding T3 to your medications?

Hello – Our bodies *should* convert T4 to T3 at an appropriate pace to address our body’s needs. For a while, there were rumors circulating the Internet that there was a specific disease where some people couldn’t convert T4 to T3. This has since been de-bunked…however, a presenter at our last conference did note that some patients may not convert as *efficiently* as they should.

Some patients do feel better when they add T3 to their regimen. However, other patients might *not* get a benefit – and still others can end up feeling worse than they did when they started. Rather than letting the body convert T3 to T4 at a natural pace, taking T3 floods the body with an immediate dose of very powerful hormone.

Because of the potential downside, any decision to add T3 to your regimen should be made in conjunction with a medical professional who is familiar with your *entire* medical history…and if you do decide to go the T3 route, your symptoms and blood levels should be closely monitored.

Finding the “sweet spot” with your meds is going to take some trial-and-error…a lot of input from a trained medical professional…and a LOT of patience on your end. However, if you do not feel that your endo is taking your concerns seriously, you might consider finding another one…or checking with your GP to see if he/she is comfortable guiding you through this process. You definitely want someone who will treat you as a partner as you go through this process.

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