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post-TT TSH levels

gailaj
Posts: 36
Joined: Jun 2008

Hi, I am new to this board but hope someone can help. Had Total Thyroidectomy on 3/20/08 due to papillary thyca nodule that was very small (8 mm on ultrasound, thyroid cancer confirmed via FNA biopsy). My surgeon elected NOT to do RAI post-surgery, since it would do little to improve outcome for such a small nodule and might do more harm with side effects. So I was just put on synthroid dose of 100 mcg daily. About one month later (4/15) TSH was measured at .63, which seemed good...but I was still feeling tired and could not lose any weight several months later (despite lots of long distance running, which I've been doing 20 years). Now the most recent TSH test (6/4/08) has come back at 3.82!! Is this a typical fluctuation? It seems impossible that what's left of my thyroid gland could still be working that well...My endo has increased the synthroid to 125 mcg, which we are hoping will suppress it to the <1 it should be post pap thyca/TT....Would appreciate any insight from those who have "been there".....thanks.

amyrhona's picture
amyrhona
Posts: 10
Joined: Jun 2008

Hi! My name is Amy and I also had a Total Thyroidectomy, along with a bunch of other surgeries. Mine was metastatic and had spread, but anyway, that is beside the point. My TSH has ranged from being in the 100's to 0.2, which is about where I like it and feel best. I take 2 of the 137mcg Synthroid's every am and my TSH still fluctuates. A TSH of 3.82 is way too high for those of us who've had cancer. We need to stay less than 0.6 I think (I believe that's what my Dr. told me where he wants me.) Or I think you said your doctor wants you below 1. I know they don't want us too low b/c that is bad, too. My surgery was January 2006 and I still get blood drawn every 6 weeks and we are still adjusting my Synthroid every few months. All I can offer you is just to say that I go through the same thing every 6 weeks. I am just glad my doctor checks me so often so he can adjust me. sometimes he'll have me take a half of a tablet every M,W,F to just slightly lower my TSH. It's really been, in my experience, a very hard thing to get right. I don't know what to tell you other than make sure your doctor is checking you often so you don't accidentally get hypo and more un-supressed. Take care! Amy

gailaj
Posts: 36
Joined: Jun 2008

Hi Amy--Thanks for the answer, sorry I didn't respond sooner, I just remembered to check again.... I am scheduled for another TSH test on 8/1, so we'll see if the level goes back down....The good news so far is that, after only a little under two weeks on the increased dosage (125), I am already feeling better, and I've even lost 3 lbs. without really doing anything else differently! So we'll see...although I guess from what I'm hearing it (that is, my metabolic system?) is still a work in progress. Be well, Gail

amyrhona's picture
amyrhona
Posts: 10
Joined: Jun 2008

Hi Gail,

I'm glad you're feeling better on the higher dose! It feels so good to lose weight without trying much; at least it does to me. I gained 100 lbs during the period after my surgeries before they put me on enough synthroid and got my levels right. I went from about 150lbs to 252lbs at my highest. I am down to 188 lbs now and it just keeps slowly coming off every week. I am on Jenny Craig, though, so I am actively trying to lose all that weight I gained. I find that I have larger losses each week when my levels are right and my TSH is < or = to 0.6. As I said in my post above this one, I just got bloodwork back and my TSH was 0.98, so for me that means I go back to taking an extra half of a 137mcg Synthroid every M,W,F along with the two 137mcg ones I take daily. Like I said, my doctor likes my TSH below 0.6 but not much below that. 0.6 is like our ideal goal. But again, like I said in the post above this one, I had to have my bloodwork re-drawn again yesterday b/c of the thyroglobulin level that popped up for the first time even though I have a high level of antibodies from the Hashimodo's. I would love to hear from other people about your original post where you asked if these fluctuations in TSH are typical. All I know is they are typical to me. I think I'll ask my endocrinologist, too. I am an RN and work at the same hospital as my endocrinologist, so I just email him when I have a question! Actually, he's in the same exact building as me and only 2 floors above me! I could just walk up there if I ever wanted, but his nurse seems to not like it when I just pop in. Maybe I'll email him and ask for the both of us. I don't think he minds. I hope not, anyway! Nice talking with you, Gail. Take Care, Amy

LBelle
Posts: 42
Joined: Oct 2009

Did you usually do self-adjusting or you'd just have to follow the Dr's order despite that you're a RN? I'm very tempting to do self-adjusting since my Dr is just two and half hours away. I'm on 137 mg now and it's not enough to me.

BellsAngel69
Posts: 102
Joined: Dec 2009

Hi Amy. My TSH level was always less than 1 until about two years. Then it went from 2, to 4, to 9, to 15, 29 and now is 121. After it started to rise, I had another I-131 treatment, surgery because it metastisized to my hip bone. It went from 15 post surgery to 121 in a year's span, but most recently went from 29 in May to 121 now. I'm on the diet again and having another PET and a low-dose iodine scan. My last PET said I was clean back in May when my level was 29, so I'm not so confident in the PET scans anymore. I guess we'll have to see what happens. My PET is scheduled for Jan. 13 and the other for the 15th. I'm keeping the faith.

BellsAngel69
Posts: 102
Joined: Dec 2009

Hi Amy. My TSH level was always less than 1 until about two years. Then it went from 2, to 4, to 9, to 15, 29 and now is 121. After it started to rise, I had another I-131 treatment, surgery because it metastisized to my hip bone. It went from 15 post surgery to 121 in a year's span, but most recently went from 29 in May to 121 now. I'm on the diet again and having another PET and a low-dose iodine scan. My last PET said I was clean back in May when my level was 29, so I'm not so confident in the PET scans anymore. I guess we'll have to see what happens. My PET is scheduled for Jan. 13 and the other for the 15th. I'm keeping the faith.

LBelle
Posts: 42
Joined: Oct 2009

Right now I'm on 137 mg Lex. I'm confused about the difference btn mcg and mg. The higher dose, you able to lose weight and stay healthy/very active? the lower dose, more hypo? Help... lol

Survivor73
Posts: 135
Joined: Oct 2009

Hello All. I had TT in July 09 with T1 Papiliar. I am currently waiting to go in for RAI..

Regarding my TSH levels, I have been exhuasted since the surgery. It's been really hard for me to know if it's stress or the lack of thyroid causing my exhausion. I as off work last yr for 6 months due to stress leave - this has made me really tired on it's own. Since I seemed to sleep for the most of the 6 mths, I can't tell if I'm stressed out again from the cancer or dealing with low thyroid levels.

When I left the hospital after surgery, I was put on 100 mcg (micrograms). After 2 mths, I had my levels checked and they were 7.5...the Dr increased my dose to 112 mcg. I still felt crappy...my ankles were swelling everyday & my monthly cycle was hell (never had any trouble before). 2 mths later, I went back and my levels were 6.8...I am now on 150 mcg per day...I don't know how long it takes to start making me feel better. I just started the new med last week. How long before it will make any changes??

I am constantly gaining weight...I have only gained about 10 pounds so far, but I am always feeling like I need food to give me energy...so I always want to eat. I am trying to watch what I eat & ensure I only put out fruit & veggies to nibble on instead of chips, etc. But, I haven't been perfect & have gained. I weigh more now than I ever have in my life (excluding being pregnant).

Any idea how long it will take to get to a good level? My Dr says to get to a level of .5 would be best to prevent the cancer from coming back.

Thanks...73

Redneckimber's picture
Redneckimber
Posts: 23
Joined: Dec 2009

Hi 73,

Everyone is different. My advice would be that you are probably having several things going on with you. I would bet that first and foremost your exhaustion is caused by your underactive thyroid and stress is playing a huge role in that as well.
My doctor advised me that it takes a full 6weeks on a thyroid replacement to level you out and she also says stress plays a huge role in your thyroid levels as well. So the exhaustion, the sleeplessness, the crappie feelings and the weight gain all contribute to your TSH not being levelled out and the stress you are going thru from the simple fact of all this crap happening to you is not helping your meds to get you stable.
I know it all sucks. I delt with all of that and then some (could go on for days about all my symptoms) for about a year before I wised up and went to a Endo Dr and got my Cancer diagnosis. Once I found out I had cancer, it all made sense all the hell I was going thru with no answers from my Primary care dr. Anyways. Give your new meds at least 6weeks to kick in and then go from there. The big thing is eating healthy and reducing stress. I know it seems impossible especially dealing with life after cancer but you can do it. I wish you well... good luck.. we all need it right!

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