[rushed]

#1169576

Hi – just got my labs after six weeks on 75mcg synthroid. My TSH has gone down from 97 to 70 (still sky high) and my Ft4 has gone up from 0.3 to 0.8 which is apparently in normal range now. My doctor wants to double my dosage to 150mcg. Does anyone know if there is a formula for that? Because it seems like doubling it might be kind of crazy-I do not want to get hyper. I am going to try to look up ATA guidelines I have heard mentioned…I feel like I am better than in a long time and I do not want to go hyper….argh.

[snelsen]

#1169577

I am simply saying what I think, and my own experience. Yes, I think that is pretty radical. I would not want to do it. When I had Synthroid tapered either up or down, it was by very small increments, with a solid two months between labs. I had significant changes in labs, plus how I felt, from 125mcg to 112.
Shirley

[rushed]

#1169578

Thanks Shirley, I talked to my doctor and told her my concerns and she agreed to prescribe 100mcg instead. I feel a lot better with that kind of increase. I think I am glad I went in though and had an appointment even though the doctor is willing to manage things over the phone. It is hard to talk through the nurse and by being there I felt like it made a big difference as I could explain my concerns, hear what the doctor thought, et cetera. Also my T3 is still low, which is good to know. So anyway, I will start 100mcg tonight! I think I feel pretty normal already so hopefully I am not overshooting but it helps to realize the first 6 weeks of replacement did feel very gradual in the amount of change- kind of week by week differences so hopefully that is all that happens. I am ready to have some normal labs someday! I am sleeping so much better these days it is amazing. I really think all the weird patterns I had a few weeks ago were thyroid related. I am back up to approx. my usual weight, I do think my muscles are still weak/somewhat atrophied but I can chew my food without noticing muscle fatigue in my jaw and climb a flight of stairs normally. I am warmer in general but still colder than everyone else- can’t drink anything cold/icy. It has been interesting and I will keep posting when I can. Thanks for reading this far!!

[rushed]

#1169579

Another update, I went to see the doctor today for a persistent sore throat (4 weeks) and had my labs rechecked early due to the fact I have been feeling mildly hyperthyroid- mainly just diarrhea again which was one of my first symptoms of Graves. Also I have lost a few pounds again. My TSH is still trending down, now at 42 (was 70 a few weeks ago). Did not get my T4 value as he said it would be posted online but it is not …yet. My liver enzymes are elevated which is frustrating because they were borderline getting back to normal 3-4 weeks ago. Anyway, it can be normal when hypo to have elevation. I have had elevated liver function tests when I was hyper and hypo now and no liver problem has been found after a very extensive, expensive investigation this summer.

This doctor said I can stay at 100mcg or go up to 125, he recommended going up but said he understands if I want to wait and recheck so I said I will wait. I feel so nervous about going up too fast I hope I am not being ridiculous…
This is hard. I think the feelings I had this summer that everything with my health was so out of control have come back. This is the emotional side of having a medical problem.

Good things now that are different then this summer: I know I have graves now, I have had one of the recommended treatments (RAI) and I am on a path to getting stabilized with the synthroid. But those summer, hyper, feelings came back today- I really do not like going to the doctor so very much…even though they are there to help me and it is just part of life, et cetera. I feel very vulnerable and stressed by it. Even just getting my blood drawn takes me back to those feelings. It is not unbearable or anything but realizing I have the feelings even if they are not exactly rational is good to realize. I am doing so much better- I am stronger and am able to tolerate the cold better. I can stay awake in the evenings and think better than 2 months ago. Anyway somewhere I read it takes a year with a major health thing to get back to where you were. Why am I so obsessed with time and getting somewhere different? Not sure but I am ready to let it go for a few weeks if I can and just focus on other aspects of my life. So hopefully writing this will help me let it go!!

[Kimberly]

#1169580

rushed wrote:

Why am I so obsessed with time and getting somewhere different? Not sure but I am ready to let it go for a few weeks if I can and just focus on other aspects of my life. So hopefully writing this will help me let it go!!

Ah, these are wise words that all of us would do well to remember!

Thanks for the update. We’re not doctors here, but like you, I’m more familiar with liver enzymes being elevated in association with hypER. It sounds like your docs are keeping a close eye on this.

Take care — and please continue to keep us posted!

[rushed]

#1169581

Another update- it has been 8 months since RAI. After 6 weeks on 125mcg my TSH has come down to around 18. So my doctor said to go up to 137mcg. I weigh 66 kilos/145lbs. According to what I can find 1.6-1.8mcg/kilo is the usual dose. But it says the range can vary a lot, so I guess I am wondering what the avg post RAI person ends up on. Somewhere else I read 1 mcg per pound? I would guess there is no average but it seems like I am getting there…. Also, does anyone know if you exercise more can that make you need more levothyroxine? My doctor seems to think I am needing more than they thought I would but I have been trying to run for exercise again (just once a week and not very far) which is what I used to do waaay back in the day before I got hyper. Anyway I feel better than I have in months- much less cold, more clear mentally, more energy, sleep better in general…I think I feel normal. I mean I still have ups and downs and tired at times, et cetera but just like life before graves kind of… Is that possible with TSH of 18? Am I deluding myself? Does it really matter if I am?

[snelsen]

#1169582

I am not a doctor, but if you think about it, having thyroid hormone dose decided by kgm/mcg ratio. It does not make a bit of sense to me AT ALL. From my view, it is labs and how you feel. Check it out with your endo.
Also, I would encourage you to do with your life style and and exercise, and everything else…DO WHAT YOU WANT TO DO. Be you again, that is what all of this is about!
TSH 18 reminds me of being hypo, but let’s see what you are, how you are feeling with next set of labs.
You have come a long way! 18 months later, I am not sure RAI is very relevant regarding much of anything. Now, it is a matter of finding the sweet spot, as Kimberly and Bobbi say, and get on with your life! Check it all out with you doc, but that is my two cents.
Shirley

[rushed]

#1169583

Well I am still struggling I guess. It has been 5 weeks at my newest dose and I feel hyper again. My last TSH was 9 something and they bumped me up to 150 which was an increase of 12.5mcg. Suddenly, subtly I am feeling back to the way I never wanted to feel again. Can’t drink coffee again, up too early, up too late- not good-anxious. I called to ask for early labs and they said they have to look into it because it is too early. So the nurse will call back I guess. But I don’t want to keep taking this dose for another week because it is scaring me to get hyper again. Also I am getting out of proportion about this- just because I am scared. I hate being hyper so much- I don’t know why exactly but it just scares me to go back into that state. Anyway, I am hoping the nurse will call back and say it is okay to go in and I am trying not to take it so seriously but I do right now. But if I write it here then my mind can hopefully just let go of it and focus on the good things. But I think hyper brains have trouble doing that, or mine does anyway. I am trying to believe even if I am a little hyper it will be nothing like last summer when I had undetectable TSH and muscle wasting and weakness. I don’t seem to be getting that and I am doing what I can to head it off at the pass. Maybe I just need to be a little hypo to feel normal at this point. Wish I could sleep in on my day off today!!

[Kimberly]

#1169584

Hello – You know your body and you know when something is off…so definitely be persistent in asking for a new set of labs!

If it had only been a week or two, that’s definitely too soon to know if a dose is right for you…but since it’s been 5 weeks, I would think the doc’s office would be willing to work with you on updated labs if you aren’t feeling well.

Take care!

[rushed]

#1169585

Hello, I decided to get back on here. I am doing well overall, I had RAI 3 years ago now and it was a sucess, I have been on 150mcg of synthroid since. My endocrinologist seemed happy with my TSH which stays around 2. I felt pretty good from a thyroid standpoint, although of course other little health things go on but those seemed to work out or be resolved over time. Lately however I have been feeling hyper again. I had lost about 12 pound this summer through intentional dieting after I seemed to be having prediabetes. I am going to get my labs checked but does losing 12 pounds make you need a slightly lower dose of synthroid? Do people notice they need a change in dose when their weight goes up or down?
I feel like I am mildly hyperthyroid again. I asked all my doctors over the years and because my TSH went so high after RAI 3 years ago (up to 97) they do not think my thyroid could grow back but of course when I feel like this my mind starts going to that scenario…especially when I start waking up early and hungry and not feeling all that tired. I guess I just have to see what the labs says and talk to my doctor. I just hope it is due to the weight loss and not that the weight loss is due to something growing back or re-activating…I wish they would make a meter for home use to check TSH every 4-6 weeks. Thanks for listening!

[Kimberly]

#1169586

Hello and thanks for the update! In rare cases, the thyroid can grow back and cause a recurrence of hyperthyroidism, but the much more common scenario is that the dose of replacement hormone sometimes needs to be tweaked as time passes

Weight is a factor in determining the *initial* dose of thyroid hormone replacement, so I do think it has some bearing. However, after that initial dosing estimate has been made, doctors rely on labs (hopefully paying attention to symptoms, too) in order to determine dosing adjustments.

Since you are feeling symptomatic, it would make sense to contact your doctor’s office to change your appointment to get a quicker set of labs. Our bodies don’t operate on a set schedule, so please don’t feel like you need to be miserable until your next scheduled appointment!

[De]

#1169587

To Rushed: Getting to the right doctors is essential in treating and coping with TED. I go to the University of Minnesota thyroid eye disease doctors and also my Endo doctor is there. Very pleased

[Author]

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