[Bobbi]

#1066706

Don’t panic about that level of TSH/hypo-ness. With thyroid cancer patients it was routine, until at least a few years ago, for them to have to go off their replacement hormone for WEEKS prior to having tests to reassure that all thyroid tissue was gone. They went hugely hypothyroid. We don’t even come close, thank goodness.

The replacement hormone gets used immediately. That doesn’t mean you will feel any great difference immediately, but it will be used by your body. There are at least several reasons why you won’t feel any immediate change. First, you might not be on quite enough of a dose. Getting the dose right requires taking the dose for six weeks to three months, getting checked again to see how much it changed things. Sometimes our endos try to estimate how much we will need, and give us that dose. Other endos will start deliberately lower than they think we will need, just to be sure they do not cause us to go hyperthyroid again. (The replacement hormone IS thyroid hormone, and you can go hyper on it.)

Second, you thyroid cells can still be dying off at this point, so any dose you ultimately need would be affected by that.

Third, it takes time for the replacement dose to build up in your body. Ultimately we get a "reservoir" of T4 from the replacement hormone. Any part of the replacement dose that your body does not need one day is viable in the body for quite a while. (The half-life of T4 is just a tad under seven days — so of any that doesn’t get used this week, half of it is still viable after the week is over, etc.)

Just try to be patient. It’s wonderful that you are so quickly on the road to health. Some people do take longer after RAI to go hypo. Wishing you well,

[enough3]

#1066707

thanks for your response, Bobbi.

I’m very happy about this, too. I’m just so THANKFUL I went in to have my labs done. Just had that "feeling". The standing order was one of the best things I did following RAI. I was able to go whenever I wanted.

I don’t know how some people get to 60,70,or 80 TSH. I could not imagine what that feels like. I’m only at 11.3 and I feel terrible. I had 4 layers of clothes on last night, and slept in my fleece jacket. I felt like I wasn’t even living…had trouble falling asleep becasue my body was so limp or relaxed.

I’m on 100 levoxyl for my dose. I weigh 119lbs., so I guess this would be considered full replacement?

At any rate, I feel a little better (mentally) taking my first dose and ate a good lunch with some Pepsi…so maybe I’ll feel a little more alive the next couple of days:)

Also, I lost 1lb. through this entire process. I guess not everyone gains weight.

[Ski]

#1066708

I am glad you’re moving along in the process! It’s impossible to say what is "full replacement" for anyone, so just keep getting monitored and dial in your best point on the normal scale. Even after you’ve reached that, and your levels are stable, you should continue being tested at least annually, because many things can change our body’s need for thyroid hormone replacement (age, weight, activity level, hormonal status, just to name a few), and since our thyroid no longer operates with the pituitary feedback loop in adjusting our levels as necessary, we need to keep our own eyes on it.

[enough3]

#1018724

I found at this morning that I’m hypo. My tsh went from 0.32 to 11.30 in 8 DAYS!!
Soooo glad I went in for labs yesterday!! My T4 is 2.2 (very low)

My Endo called in my levoxyl this morning and I took my first dose! Hurray!!

Now, when does it kick in???? Has anyone noticed immediate small changes?

My Blood pressure is REALLY low..like 89/42….totally worried about it. Pulse is around 55

[enough3]

#1066709

One more question…

My pulse is really low at night (low 40’s). I have had 3 terrible nights of sleep b/c I’m paranoid that if I fall asleep I will not wake up. Sounds silly…but this is totally different feeling than hyper.

This morning was my second dose of 100 lev. Is it possible that even the doses I have had the past two days will help my heartrate some. It is just the weirdest feeling. I also went running (which I have been doing a lot the past month) and heartrate only reached 78 (after 2 miles). So, its just a weird feeling.

Also, can I get more hypo on the levoxyl this next week even though I’m taking doses? I know it sounds silly..but I’m not used to this process. I’m only really famailar with being hyper and understanding the ADT’s. For example, when I was on PTU, it would take me around 7-10 to see a difference in my tsh and t4. Also, when I was really hyper..sometimes it would take 3-4 weeks for my tsh to even budge off 0.001. How does replacement work in comparision to ADT’s???

I’m really okay with how I’m feeling…except the low pulse is really making me anxious:(

[npatterson]

#1066710

Your low pulse won’t hurt you. The fact that you can go running is an indication of that. Give your body a chance! Just something to think about: you know how you feel at your level of hypo–when thyroid cancer survivors have to totally go off their replacement for a total body scan (which means several weeks), they go up to TSH’s of several hundred. The most I ever heard of was 800!

Take care,

[maryintx]

#1066711

Was going to second that, I belong to a thyroid cancer group – joined to get diet ideas for the low iodine foods & info on nodules- and saw postings that are similiar to yours there regarding low blood pressure & sleep. Are you on a new beta blocker dosage? I am so jealous of your running!! Hope things settle into normal range for you quickly.
The anxiety sounds normal to me if your thyroid is changing that much, that would be normal to be manifesting fears (at least according to my Mom’s experiences) she was sure she would fall asleep while cooking something and not wake up when the house was on fire. Are you getting labs done more frequently then the norm? Im sorry if you already posted, but I would go in early if only to reassure yourself.

[enough3]

#1066712

I’m doing fine now. I have been on replacement for about 10 days..so I can already see a difference.

I’ve always been really active, so the running is just something that I feel I have to do to feel good. It really helps me. I’m very cafeful about how much and how long I run right now.

All and all..thing are really coming together for me with Graves. RAI was a great option for me:)

[susandemarco]

#1066713

Hi enough,
It has been three weeks since my RAI, and I feel fine. How long did it take for you to start to feel hyper before
you went hypo? How long did the hyper feelings last, and did you take anything to help feel better?

I am worried the RAI did not take, because I am feeling so well. I keep waiting for the other shoe to drop. The
nuclear doctor said that around the three or four week mark I will start to feel a little hyper. I saw my
endo last Thursday and they took blood and I should get the results any day.

Any information from your experience will be greatly appreciated.

Thanks,
Susan

[enough3]

#1066714

I went hyper around week 5 or so..and it lasted till around week 8 1/2. I literally went hyper to hypo in 8 days..NO KIDDING..lol I have the labs to prove it!

If the "shoe drops" on you and you go hyper, it will not be as bad as the "original" hyper. It drove me nuts…but it is very short-lived.

Hang in there. A lot of people get through it without any major hyper symptoms…maybe that could be you.

If you think you feel good now…just wait till you start replacement..I’m on day 10…and I feel the BEST I have felt in YEARS!!!!! I think I’m somewhat sane…what ever that is..lol

[PAT1953]

#1066715

Wow, Enough, I’m so glad your getting it back together. It encourages me to hear the good things. I’m still climbing the hill. My Rai was almost 7 weeks ago and I had blood work done last week and my TSH hardly budged and my T4 the same. I could tell, though, as I am still having hyper symptoms. I’m still taking beta blocker twice a day, but my heartrate is lowering if I don’t get stressed. So I may cut back on that and see if it stays down. Last time I cut back and before I knew it, it was right back up to 85-89 in a week so back to taking more. I get so very tired of the daily struggle because I so want to feel good again. Sleep is still very very hard. I really am trying to be patient, but I’m afraid it will hit hard when hypo hits and then I will have to start another battle. But I read the stores everyday and know I’m not the only one out there struggling and hoping. Thank goodness I have this website to turn to.

[susandemarco]

#1066716

Enough,
After you went hypo, did you get any puffiness in your face or body? If you did, did it go back to normal after
you started the replacement hormone?

Thanks,
Susan

[enough3]

#1066717

Hi Ladies,

Susan- I did not get any puffiness in my face-at all. I actually did not gain any weight. I did notice the my waistline was retaining some water, or something. When I went hypo..I caught it within days and started replacement the day my labs got back. SO, within the 5 or so days that I was "hypo" without replacement, I noticed that I did not have ANY good BM’s. But, everything is normal now:)

Pat, all I can say is hang in there. My BEST advice for you is to get your labs done every week. I know that it is an annoying and not fun to have to have that done so often..but I credit my good experience from hyper to hypo to getting my labs done so close together. If I woud have listened to my Endo’s advice..my labs would not be due for another 3 weeks!! I could not imagine being hypo for 5 weeks….and then having to wait a good 7 days for the replacement to kick in (it kicks in on day one..but the effects are better noticed after the first week). I truly beelive that is why people tend to gain a few pounds and maybe get puffy and bloated (etc). They are hypo for many days and weeks..BEFORE their labs are due. Listen, the 2 minute blood draw is worth EVERY PENNY once a week until you go hypo.

I will not have labs done for another 4 weeks now. I agree with all the facilitators on this site that it would be completely fruitless to do so. Hypo is a different monster with a different set of rules…

But, stay positive and encouraged. You will feel so much better in a couple weeks. The whole RAI thing is like giving birth. You wait and wait and wait..not knowing when your going to go into labor….and when the labor comes it comes when you least expect it and its over so fast you forget the pain!! ” title=”Razz” /> At least that is what hyper to hypo felt like for me

[susandemarco]

#1066718

Enough,
Thanks for all your valuable information. Could you please tell me when you started to go for blood
work every week. I went last week and the nurse called to tell me everything was ok, and the dr.
wants to see me in four weeks. She said my tsh was 0.11. I have no idea what this means. When
I go back to see her I will ask her to explain all the numbers to me.

Thanks again,
Susan

[Ski]

#1066719

Hi Susan,

You should be receiving paper copies of all your blood test results ~ that way you can see what the range of "normal" is for that lab (they can be different, lab to lab, due to processes used, etc. etc.), and then you can also see where you fall outside of that range, whether you’re just a little outside it, or far away. That’s the important thing.

For the most basic primer on thyroid hormones, T4 is inactive thyroid hormone that circulates in the bloodstream until the body needs to use it. At that point, the body converts T4 into T3. T3 is the active thyroid hormone that our cells use to function, and those levels can fluctuate throughout the day, depending on your need for active thyroid hormone. TSH is "thyroid stimulating hormone" that is secreted by the pituitary gland in response to T3/T4 blood levels that the pituitary senses. When the pituitary gland is sending very little TSH out, it means it is trying to ask the thyroid to make less hormone, meaning that it senses too much T3/T4 in the bloodstream. When it is sending a lot of TSH, it is yelling at the thyroid to MAKE MORE, MAKE MORE thyroid hormone. The T4 and TSH hormone levels in your blood tests should have a seesaw relationship ~ in other words, if your T4 is abnormally high, the TSH should be abnormally low, and vice versa. When they BOTH fall within the normal range, voila, magical.

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