[NikkiDay]

#1058935

So last week, after having a cycle migraine for over 30 days consecutively, I went to the ER. I didn’t go because of the migraines as I’m a chronic migraine sufferer and am accustomed to being functional during the migraine, but rather I went because the muscle cramping and fatigue/body pain that I was experiencing with the migraine (or so I thought) had become unbearable and scary. Let me backtrack a bit, I had RAI December 29th of last year and had my last lab workup in mid February. At that time my thyroid function was normal and the endo scheduled a new set of labs in 3 months. While at the ER I told them that I had Grave’s disease and they ordered a lab work-up. When they looked at my TSH it was off the charts and my t4 levels were nearly non-existant. They faxed results to my endo who immediately prescribed replacement hormones. I have now been on the replacement hormones for 6 days with no improvement. I’m so fatigued that all I want to do is sleep. My muscles are so sore and weak that I cannot bathe myself or brush my own hair or teeth. Walking more than 2 or 3 steps feels like I ran a marathon and even normal bodily functions are difficult and exhausting. My endo said it was normal to feel miserable while my levels come back up – but I’m wondering how long others have experienced these types of symptoms. The worst part is that no one understands. At work when I say I’m tired, everyone else is tired too. The same goes at home. I’m not looking for sympathy, I just don’t know how to make everyone understand that my abilities are severely impacted and I can’t help it. Ugh, I’m just hoping someone can tell me that this is normal and will get better in some sort of timeframe.

Thanks,
Nikki

[Kimberly]

#1171043

Hello – Hopefully, you will start to see some relief soon, although it can take a few weeks for the replacement hormone to take *full* effect. The reason is that T4 has a “half-life” of approximately seven days. This means that when you take a dose of meds today, half of that amount will still be in your system in 7 days…one-fourth of the dose will remain in 14 days…then one-eighth will be left in 28 days. So for these next few weeks, the amount of replacement hormone in your system will be slowly building up, with each day’s dose that you take.

There are many regular posters here who are on replacement hormone, so hopefully, they will chime in with their own stories. Every patient is different, though, so YMMV (your mileage may vary).

Take care!

[Bobbi]

#1171044

Just to add to Kimberly’s explanation — it doesn’t take weeks for the replacement to start to work. It is working right now. And, hopefully, building up. But you might need — ultimately — a slightly different dose, whether bigger or smaller. And you must be on a single dose for a minimum of six weeks (but preferably three months) before your blood tests will be an accurate portrayal of whether the dose is appropriate.

I think we sometimes think that the pill will make us feel well instantly. It does not. And it takes time AT normal levels of thyroid hormone for our body to heal from the months of wonky thyroid levels that it has endured.

Know that you will feel OK again. We do get well. We do feel well again. But it takes some time.

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