It's me again with more questions! Lol. Quick recap..TT 12/17/09. Endo started me on Synthroid a week later..50mcg. Low dosing was due to the fact that I have anxiety. Had 1st set of labs and TSH was 66.060! On Feb 13th he bumped me to 75mcg. Due to have bw done March 12. Obviously, I'm extremely hypo. I might have 2 to 3hrs of energy out of the day and that is it. I literally feel as though i can't function. Extreme brain fog and depression. Never had a problem with depression before. I don't have many of the other hypo symptoms but the 2 that I have are ruining my life!! I can't concentrate, my body feels like lead and I cry or am mean for no reason. Do I really need to wait another 2wks for a bump in med? I'm sure I'm so far in the hole that with even this bump to 75mcg..I feel no different..in fact I feel worse!! I can't imagine continuing to feel this way. I'm so keyed up on the inside (I never feel relaxed for some reason) but it's hard to be up and doing things for a couple of hours! I'm sleeping at night and do not take naps. I have my 1st and only labs in my previous posts. They are within range. I'm looking at my script for my bw March 12 and it says T4 Total, T3 Uptake and TSH high sensitivity. I see people say to have "Free T3 and Free T4" tested but my endo said that would be done only if TSH came down to where it should be and I'm still not feeling well and I'm only a little over 2months post op. I want to call him Monday and beg him to raise med or do something..as this is the worst I've felt since TT. How am I going to feel like this for another 2 weeks? I was never depressed nor felt like this in my life! An antidepressant is not an option. I've tried them for my anxiety and there are way to many side effects. I'm very sensitive to meds and I don't need to feel worse. Please advise if I should push endo or just sit here and suffer!! Thank you all in advance!
As you know, I am in a similiar situation and I can truly say that if my symptoms were any worse than they already are, I would definitely be on the phone with my doctor for help.
I was very skeptical in having surgery due to the stories that i have read , whether on this site or on other's. I specifically asked all of my doc's and even a woman who worked out in the same gym as i did because she is a pediatric endocrin, will i have any "long term" side effects from this surgery" and i named them one by one They all said: once you take the med's, you will have no symptoms. Im wondering why it is that everyone on this site has or had issues with hypothyroidism and some much longer than others.
I truly know what you are gong through with the anxiety because i was once a severe sufferer and was house bound for months. That alone is bothersome and then to add on many other symptoms which are also bothersome. The exhaustion alone is enough.
My TSH level came down from 39.51 (1mo post surgery) to 13.something (2mos post surgery) but i felt fine when my level was at the higher #..and" i hadn't started taking "levothroxine" at the time.
Waiting it out is easier said than done....but,what is one to do. In the midst of it all , we are all blessed anyhow.
yes, call the doctor on monday. Let him know exactly how bad you're feeling (particularly the immobilising depression). See what he can do.
75 mcg is definitely not your final dose. I kind of agree with him about not testing ft3 and ft4 til the tsh comes down. FT3 and ft4 are for finetuning meds and you are obviously so hypo you still need med increases.
But maybe he could consider adding in a t3 med. it may help with the anxiety/depression ånd get you feeling better sooner.
Thank you both and I'm definately going to call Monday. I see other people post here with higher TSH than mine and some say they don't feel so bad?? I must be crazy then! LOL. I just hope he doesn't make me wait until the 12th. You know, to them, it's just a couple of weeks away...to the patient, it feels like a lifetime! ...Blessings to both of you....Lynda xoxo.
It takes 5-6 weeks for an increase in med to take full effect and you've only been on the 75 mcg dosage for 14 days. I know you feel horrible and patience is the last thing you want to think about right now, but you have to give the med a chance to work.
If you start going too high, too fast with the med, you could end up in worse shape than you are now.
I disagree that FT3 and FT4 are only for "fine tuning". Those are the actual thyroid hormones and if you and your doctor don't know their levels you/he won't know how to dose the med. You can't do it on TSH alone because some people do better with TSH over range and some (like me) do better with it below range.
I would never recommend adding a T3 med without knowing exactly what your FT4 and FT3 levels are. If you add a T3 med when you don't need it, you could go hyper very quickly and that could be worse than what you are suffering now.
I would only recommend adding a T3 med if your FT4 tests high and your FT3 tests low -- that could indicate a conversion problem, in which case a T3 med would be appropriate.
By all means do whatever it takes to get your doctor to test for Free T4 and Free T3. Total T4 and T3 uptake are pretty much obsolete and won't tell you much at all.
You need to know the levels of the actual hormones in order to be dosed correctly; please do not let your doctor base your med dosage only on TSH -- that's a recipe for disaster.
Why are dr's so reluctant to do these proper tests?? He already gave me the script for the bloodwork and I know he's not going to change it. It would be an insult to him if I insisted that he did...he's the "Director of Endocrinology" and thinks he knows everything! He is very well respected. I'm not sticking up for him by any means! I think he should have raised my med sooner than 9wks post op! I understand it takes awhile for the med to get into your system correctly, as he told me I have to be patient..but isn't it funny now that he is doing bloodwork every 4wks (and only checking the things i've posted) to see about an increase in meds? That's kind of him contraidicting himself to me...or that's his way of shutting me up! I just never thought I'd feel this bad! It seems to be getting more difficult instead of easier. It just stinks when you don't feel the slightest bit of improvement and truthfully, I felt 10x better before TT. That's why I don't answer too many posts on here...I don't want to discourage anyone!! Lol. .....Thank you!
Oh - answer to your question of should you call? - YES! - call and demand testing right now and make them order the FT3 and FT4 with the TSH. Also, it wouldn't hurt to run the reverse T3 here either.
( Barb, I know the adjustment time you are saying with 5-7 weeks - but what I read is this person is slipping and getting more symptomatic as time goes on) My belief is if things are getting worse ( or even improving) .....something - based off symptoms - is happening and tests "should" uncover this...
**** again, tracking lab sheets here w/ each visit and labs done is definately a plus ****
I wasn't saying she *shouldn't* call -- only reminding that it does take time for the med to work and raising the dosage too quickly can be trouble also; also the need for proper testing to see what's going on.
I totally agree that just because this doctor is "Director of Endocrinology" doesn't make him any better than anyone else. He sounds exactly like the type of doctor I would kick to the curb in a heart beat.
froggy -- would you rather insult the doctor or continue to feel like pooh? I think the problem is that he's not testing the right things. Without knowing what your FT4 and FT3 are, there's no way to know exactly how to dose you. Too many doctors are reluctant to test FT3 and FT4 -- I'm not sure why, but it seems that they are stuck on the "old school" methods of treating thyroid issues based on TSH levels; therefore, they are keeping too many patients ill. Looks like it's up to us patients to retrain them. I just got my pcp into the FT3/FT4 "mode".
I haven't had TT, so that could make things different, but I started out with a TSH of 55+ and I felt much the same as you do. It's very frustrating when the doctor who is supposed to be helping you won't even listen. It's taken me almost 2 years and having to kick a very well respected doctor to the curb, but I can finally say "it's better".
Again, I'm not saying that you shouldn't call your doctor -- I'm merely saying that you need to know what's going on with your blood work, as well as your symptoms, which is why you should demand the FT's.
I'd also recommend that if you get to feeling TOO badly, don't hesitate to go to the ER; there may be something that can be done to help you.
I feel for you and am wishing you the very best of luck.
Thank you both for your input and I will definately let you know what happens when I call tomorrow. I am not a shy person..lol..and I've already thought about kicking him to the curb. I guess I just wanted to give him a chance, as I've only seen him twice. Once for my initial consult and then once after TT. I'm going to ask tomorrow about running the other tests. For instance, I woke up today and my arms are killing me! Maybe because I carried a few bags on the way home from the store?? Ridiculous..if you can't even do that! I can't wait to see how this phone call goes tomorrow! It still baffles me as to why these drs do not perform the correct tests. The shame of it is, I've done my research and the 5 or 6 endo's here all do the testing that way! What's wrong with them?? So much for patient care being the top priority!! Thank you again!
Being hypo can cause sore muscles and joints, so carrying the bags might have been too much at this point in your treatment, although we figure we should be able to do simple things like that. I've had a lot of issues with sore muscles/joints and my former pcp kept telling me "EVERYONE gets "arthritis" when they get older" -- yeah, right; funny, though that most of the "arthritis" went away once my thyroid levels came in line.
I don't blame you for wanting to give this doctor a chance. If you ask for the testing and he refuses, then you can make a decision as to the next step; however, there IS a chance that he might go ahead and order the tests - who knows? It sure isn't going to hurt to ask.
Some doctors are willing to learn from their patients - my current pcp seems to be; while others get very offended when you indicate that you might have some knowledge about your condition - my former pcp, which is why he's "former". The thing is that you have to be your own advocate because no matter what the doctors or the tests say, YOU are the one who knows your body the best.
Doctor's are there to do a job and the most important one is: "listening to his/her patients" and not pushing them off by coming up with their own irrational thoughts of why you are feeling this way. If he doesn't do anything after telling him how you feel, you have the benefit on finding another that will!
You say two things in your original question that I'm focusing on. 1) You're prone to anxiety. 2) You're very sensitive to meds.
I understand that you feel like cr@p, but I think you should think about a couple of things. Your meds were just increased from 50 to 75 mcg two weeks ago. Now, increasing from 50 to 75 doesn't sound like a big increase, but it's 1 1/2 times what your body was used to getting for the two months prior to the increase. Two weeks is not enough time for the increased dose to be totally felt or totally reflected in labs if you were to have them now.
If you're both sensitive to meds and prone to anxiety, a slow and steady approach, giving your body time to adjust to each dose can be extremely important. The danger in going too fast is that you will start having hyper symptoms. Then, you'll have to back off the dose, give yourself time to re-adjust, then increase again, more slowly this time. In the long run, a slow and steady increase can minimize the time until you feel well. It's unfortunate that your doctor waited two months before your first increase. However, that is now "water under the bridge". You can't "make up" for it by increasing faster now.
Absolutely, on the FT3 and FT4...you need to see these at every lab. If you use nothing but TSH until you are ready for "fine tuning", you might never get to fine-tuning...ridiculous. Your doctor should be ordering these and not giving you some line when asked to do so. You said you have a "script" for your labwork. Is it one of those forms from the lab? Does it have little boxes to check next to FT3 and FT4? You can always add a couple of check marks of your own! After all, you are paying for this...
I'm really sensitive to meds, too. I never take anything without trying it out at a half dose first. I was started out on way too high a dose of meds...had to back off and back off...that cost me about four months. My doctor started me at 88 mcg. Four months later I was at 25. It took me the next year to get to 75, where I still am. I hit every step between 25 and 75 that I could make by halving/combining/alternating doses.
So, if you CAN hold out for two weeks, get a look at labs, get your doctor to order the right tests, it just might be more efficient in the long run.
I'm not saying you shouldn't call your doctor and tell him how awful you're feeling and see what he says. Just a little more to think about...
Actually, my personal opinion only, is that persons who have had T/T should have their meds increased to just below a 'weight calculated' dose fairly quickly after T/T. This is because before the T/T the person (presumably) had normal levels. Then they had the T/T and suddenly there is no thyroid hormone. So they went from 'normal' to none very quickly of course they would be very symptomatic this is a big shock to the body - I think that once they are on a 'weight calculated dose' then adjustments from there. The skillful endo would try not to let the patient get too much of a shock from the sudden drop in hormone levels by medicating appropriately.
Testing FT3 and FT4 of course is critical. IF the patient is found not to convert well then T3 should also be warranted.
In case of auto immune thyroid failure the drop in hormones comes gradually as the thyroid slowly fails, which may allow the body to adjust to and become used to lower levels, in which case a slower increase may be warranted. Or in many cases the thyroid meds increase as the thyroid fails.
I appreciate all comments. My next labs are just on a print out sheet from Endo. I left a message at his office so he would get it first thing in the morning. I told him I would like to have the "free's" tested and to send me a new prescription. I'll be sure to post what he says. I don't know how to explain it besides..although my body is exhausted, I always feel "keyed up" on the inside, seems like I have trouble concentrating? It's all so confusing because as I said, I do have a problem with anxiety, but I've cut out the Klonopin and just take .5mg @ bed. I did that reduction under a dr's care, of course. I did it because it seemed if I took a bit in the day..at this stage of the game I didn't need to feel MORE lethargic on top of this! I never took more than 1mg total anyway. But Ive read here and have also been told by others that the anxious feeling can come from both hypo or hyper, it can also be a side effect of synthroid, or just plain old anxiety! How is a person to know? I have alot to learn, I see! Knowing the Endo, I have a feeling that he won't raise med until next labs on the 12th...but I will be insistent on the Free's being drawn! Bottom line....anxious on inside and lethargic on outside...Blah. It's so weird to me now..how do you know if what you are feeling is from having TT and getting adjusted..or if something else is wrong?? Thank you all for listening to me ramble and trying to help me!!!...........Lynda xo
Just wanted to mention again that my script says...T4 Total, T3 Uptake and TSH High Sensitivity. You are all saying I need to ask for FREE T3 and FREE T4...correct? That's the message that I left for Endo. FREE is different than what he is testing for, right?.......I just don't want to sound like a fool when talking to him! Lol. Thank you!
I don't think we are ever going to understand this! Lol. If you look at some questions on Dr. Lupo's forum....I get the impression that TSH is very important in showing if you are hypo, etc. and how to adjust your dose. Hopefully you and I learn as time goes by! ....QUICKLY!...........Lynda xo.
T3 is total T3 (TT3). It measures the total T3 (thus the creative name!) in your blood. However, much of the TT3 is chemically bound by protein and thus unavailable to your cells. FT3 measures what is actually available to your cells. This is what you want to know. Likewise for FT4 vs. TT4.
FT3 correlates best of the three tests to symptoms. FT4 is next, and TSH barely makes the list. T3 uptakes is an obsolete test...it's been replaced by FT3 now that techniques for measuring FT3 have been inproved and cheapened
.If you want to learn how good a diagnostic TSH is and how reliable it is in determining your dose, just read the comments on this forum from people being treated on the basis of TSH, without FT3 and FT4 to back it up. They are miserable. There are several posts every day from people being treated by TSH, who are totally disgusted with their treatment.
Read, read, read...I've been doing so for about a year and a half now, and I know what poop TSH is without FT3 and FT4 to back it up. Many doctors are convinced of the sanctity of TSH because it's what they were taught in med school...when?...thirty years ago. Apparently many of them have never picked up a medical journal since.
I agree with stella, Barb and especially goolara.
I will give you a classic example of why TSH alone should not done.
Due to stress, (yeah THAT word lol) , I went borderline HYPER.
My FT4 was near the top of the range and so was my FT4 ...YET...my TSH was 4.7.
Work that one out.
So I decided that rather than feel like my head was gonna explode, that I'd be up for attempted murder against my Sisters...to drop my meds by 12.5mcg weekly, until I felt better.
I had all the symptoms of HYPER but ALSO all the symptoms of HYPO too.
I found that by dropping my meds by 12.5mcg for 4 weeks, it brought the FT3 and FT4 down and my TSH stayed the same.
Persoanlly I have found that my TSH seems to have a mind of its own , REGARDLESS of my dosage soooooo...I go by the Free's.
Now that I feel good and now that I am a little cold the last 3 days, I have gone back up to my origianl doeses.
So PLEASE do not go by the TSH alone......look at the Free T4 and Free T3 THEN the TSH if all else fails.
Hope that helps.....
Ooops ..forgot to tell you ..none of us is normal lol :o)
Definitely...and don't take "no" for an answer! Seriously, you are paying for this, and you are the customer (always right, right?). If the doctor isn't interested in seeing it, just say, "Well, I am!". They should order it automatically. Barring that, they should graciously add it upon patient request.
I spoke to Endo's P.A this morning and she said he wants me to have bloodwork done this week instead of next week. That is only 3wks after the increase from 50mcg to 75mcg....but maybe it's because of the message I left on the office phone over the weekend saying how AWFUL I feel. Maybe he just wants to make sure my TSH didn't go higher for some reason..it was 66! I don't think he plans on increasing med just yet, as it is too soon. When I asked about having my FREE's checked..she said his response was "not yet." So, he didn't say No and I'm thinking he's not testing them yet until maybe my TSH goes down a bit, since I am only 2months post TT? At least it doesn't seem like he doesn't plan on testing those in the near future. So..I will have bloodwork done tomorrow. Any feedback? Thank you!!!
I hate to beat a dead horse, but I'm going to! FT3 and FT4 should be tested now and always...every time you have bloodwork for the rest of your life. I just do not see your doctor's point. FT3 and FT4 are cheap bloodtests that provide so much information. Why NOT run them, especially after patient request. This guy is definitely "old school". I'd seriously start a search for a new doctor. Without FT3 and FT4, he's flying mostly blind. Dr. Director-of-Endocrinology needs a refresher course in thyroid. Sorry, but I'd run, not walk, away from this guy.
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