Yep, I'm a new hypothyroid patient. Kinda suprised, because I haven't had any rapid weight gains or anything. Come to think of it, I've been "depressed" on and off for about 12 years. I'm 32 now. Lately very cold and, very, very tired, ...and hardly able to form a thought (brain freeze!, kinda embarrassing at work) and a host of other symptoms that once I read them in the books I realized they were all related to my thyroid.
Dr. tested my TSH, just to give me "one less thing to worry about" and it was "10.3" on a scale of something to 2.5 I think. You guys might know off the top of your head. Anyway, I was suprised because both he and I didn't expect a thyroid problem, (well, I asked for the test b/c I knew something was wrong but I didn't expect the result!). My T4 was tested, it was "1" (within the low side of the normal range). But, my T3 was not tested! Is this not a normal test? But if it was low then what would he do, put me on Armour and who does that anymore? I know the reasons why someone would have low T3 - b/c of poor conversion to T4 - but not sure what causes the poor conversion.
I'm on 50 mcg of Levoxyl now and have to increase it to 75 mcg today. He started me off on 25 but it went down from 10.3 to 9 after 5 weeks at 25 mcg. Is this normal? I retest in 2 weeks and I'm thinking about asking him to check my T3 but then I'm not sure what I'd do with the results. Any thoughts would help. Everyone on these boards seems to know a lot, and I have enjoyed reading all your threads. Thanks.
Last edited by littlebigeyes; 06-30-2006 at 08:29 PM.
If I were you I'd be thankful to have this diagnosed so early in life. Since you're catching it now, you'll just take a pill every day for the rest of your life and never have to be really sick and wonder if your body is dying piece by piece.
I'm hypo, about 7 weeks into the meds. After six weeks on .05mg Levothroid, the next lab showed a TSH of 3.7, down from the initial 6.4, and I lost the brain fog and my feeling of anxiety, lost the extreme irritability. My doc has set a range of 1-2 for me and raised the dose to .075mg. We test for TSH again six weeks from the dose increase.
He won't do other thyroid tests like FT3 or FT4 unless actually needed and, so far, I have no reason to have a problem with that. Most hypothyroids really just need T4 and can convert T4 to T3 just fine. Some will tell you different, but, so far, this is working fine for me. I admit it would be fun to see the free T3 and free T4 results, come here and compare them with others, but labs, although I pay nothing, do cost money. I am for not raising the cost to the insurance company because I do know who pays for that in the end.
I did ask my doctor if he would be using FT3s and FT4s to monitor and he said TSH is the most sensitive and best diagnostic test today, that other thyroid tests would only be used if something doesn't look right. In my case, the TSH is dropping and I'm already feeling much better. It sounds like your progress is similiar.
My best advice is to just do what the doctor tells you to do unless he doesn't get you well. So far, it sounds to me like you are being treated well.
... just do what the doctor tells you to do unless he doesn't get you well.
This is wise advice. I echo it.
However, there is much difference of opinion in the medical world about the "sensitivity" and usefulness of the TSH test, and about the incidence of conversion problems in the hypo population. The fact that your lab is using a scale where 2.5 is the high end is perfect evidence that TSH is not the be-all, end-all test it used to be thought of ... or else the AACE would not have lowered the "normal" high to 2.5. Most labs still use a standard around 5.5. You can see how many hypoT folks that misses.
One successful thyroid clinician whose book I've read says that "most" people have at least "some" degree of conversion difficulty. Well.... who the heck really knows... Because medical science has its head planted so firmly in its backside, that no one is taking any serious looks at the probability.
When I was diagnosed 3 1/2 years ago, I believed that since Synthroid (T4) is the most prescribed medicine for low thyroid, it must work the best for the most people. That still may be true. We on this board only hear from people who are having trouble adjusting to one or another form of treatment; undoubtedly, there are many other T4-takers we'll never hear from who do just fine on T4 alone. Just as undoubtedly, there are some people who really aren't doing all that well at all, but they figure there's nothing else to be done for them. They aren't aware it can be better.
When I was diagnosed, I was given 75 mcgs of Synthroid. TSH was 6.98, FTs low-normal. Within 3 weeks, my TSH was suppressed - .02. Dosage was dropped to 50 mcgs. The TSH was still suppressed. On both doses, my free Ts were at or above their lab ranges, which signified that I was genuinely overmedicated. Since 50 is the smallest therapeutic dose, (25 is a starter or adjustment dose, not a therapeutic one) and since that particular endo prescribes only Synthroid, she told me to stop the medicine and wait till I got sicker, so that I could then "tolerate the medicine". I'm no dope, and so I rejected that asinine advice. I found a doctor whom I knew would prescribe something different and saw him one after a month's time unmedicated. My TSH was back up to 7. Because of my previous reaction to Synthroid, he cautiously prescribed a tiny amount of Armour, which was very gradually increased on a regular periodic basis. I have not been hyper/overmedicated since that new beginning, even though my TSH is still suppressed to .02-.03. My MD knows this suppression is fine, because he also watches the FTs, which have never been anywhere near the top of their ranges since the Synthroid episode. Most MDs would freak out seeing TSH at that level; I'm thankful mine knows that it's meaningless. It's obvious that for some reason unknown to man my pituitary is hypersensitive to the influence of exogenous thyroid supplement. But it doesn't mean I don't need a supplement at all.
All of my blah-blah is probably not relevant to your situation in the least. I only recount it so that you'll know that there is no one-size-fits-all approach to this disorder, and you shouldn't let anyone try to tell you there is. I want you to know that it's fine to go along with your MD, but that if you get nowhere on the regimen you're on now, you have options that are just as valid.
Best of luck to you!
I also agree with the good advise about listening to your doc...HOWEVER... I totally agree with what Midwest is saying. I'm also talking from experience...my OWN experience. I concur that TSH is NOT the best indicator of a problem thyroid. I have discovered in my personal journey with Hypothyroidism that the times that I have felt my VERY best...physically and emotionall, is when not only my TSH is 1 or below BUT ALSO when my FTs are in the upper range (high). I have made a mission to obtain all of my labs for the past 3 years and gone through them with a fine tooth comb and it is as clear as rain to me that whenever my FT3 was low...I felt horrible and achy and was miserable...despite my TSH (which was always usually well above 5.5) Many times (for me anyway), if my TSH is elevated, I can bet dollars to donuts that my FT3 is very low...and I've got the labs to support that. My point is, if the doctor doesnt ever check your Frees, then he/she won't know exactly what they are. **point to ponder: T3 is the most active and potent of the two hormones. If you're having a problem converting T4 to T3, how would your doc know if your frees aren't drawn? Many people convert just fine, I did for a long time, but I don't anymore so I now need some help...T3 supplements. Body changes, needs change. I just believe that you should be aware of ALL your options and not ALWAYS settle for what the doc tells you, especially if you're still not feeling well. Afterall...who knows your body better than you? If you're doing well with doc's advise and approach to improving your health, then great! if not, just know that there ARE other options and it's not rude or disrepectful to inquire about it. Also, I don't care what the labs costs to run my additional tests...If it's what I need and what the doc needs, then run them!...I'm worth it and so is my good health!
Thanks for the point of views. It's nice to know there are others out there, and each experience is different. I probably will ask him to test my T3, but I appreciate hearing from everyone. It's nice to know I am not alone! Good luck to all. I go back in a couple weeks..............till then.
I did realize when I posted my view is definitely the unpopular one. I will never understand why the majority tell the newbies, who are obviously making progress with a doc using TSH for a monitor, to press the doc for more expense in the testing.
littlebigeyes is diagnosed young and being treated young before the terrible symptoms, like mine, appear. The scale her doc is using is reasonable. If he continues just as he has started, my bet is that he will get her thyroid levelled. She would then be monitored for changes and/or complications the rest of her life. If we could bet, I'd bet he'll take good care of her, that he would know when/if other tests are needed. And I don't make a habit of betting.
If people jump in too soon telling her she must have FT3s and FT4s and her doc must medicate her to the standards established by a group of us on an internet board ... Well, I'm not going to complete my thought there, but I will venture to say, if I could convince my doc to change his diagnostic and treatment methods based on what I told him I want, I'd be changing docs really quickly.
The keys here, IMO, are:
1. newly diagnosed hypo
2. A few classic symptoms which, in my experience, will subside as TSH levels get lower.
If it works, why spend more money, raise the insurance rates?
I'll truly return to lurker mode this time when it comes to advice. I am an intruder and really don't belong here in that regard.
I will never understand why the majority tell the newbies, who are obviously making progress with a doc using TSH for a monitor, to press the doc for more expense in the testing.
Now Pac... There you go again. For one thing, littlebigeyes has not said she was making any progress yet. It's probably far too early in her game for progress as such.
I thought we had civilly talked this all out... If your remarks were aimed at me, you should go back and reread what I said. I immediately agreed with you that littlebigeyes should go along with her doctor's plan, until or (in your words) "unless he doesn't get you well". And where did she say that her symptoms weren't "terrible"? She has listed some that were pretty terrible when they happened to me! From what I've seen here and have personally experienced in the past four years, her odds of being less than optimally treated are pretty high, so my bet - and I'm not a bettor, either - is understandably that he just might not get her thyroid levelled. If she knows that ahead of time, she's well ahead of the game. I, for one, did not jump in telling her she "must" this or "must" anything else. But she should KNOW what may lie ahead and what is working best for others in her situation.
Your role here is an important one... To voice the other opinion, even if it is the minority one. For that reason, I really hope you won't return to lurking. The best educated patient needs to know all opinions, and that's really all we do here... offer opinions.
I'm not a bettor either, but if I were, I'd bet you work in the insurance industry. Here's a little story about the terrible waste of insurance dollars ~
Just this month, I got fed up with a balky sinus that I've had for decades... yes, decades. It hurts, bleeds, gets blocked up and infected on a regular basis. Only one side. So I figure, maybe there is a polyp, latent infection, or even a tumor in there, causing all this trouble. I took myself to an ENT, who immediately started talking about allergies (which I don't have). He looked into my nose with the scope, sees nothing, and prescribes cortisone nasal spray. He's about to leave the room when he stopped talking long enough for me to get a word in edgewise. I say, "But what about the bleeding?", which stopped him in his tracks. He apparently wasn't listening when I said the word the first time. "Bleeding?" says he. Well ok then ..... time for a CT scan to rule out polyps, tumors, active infection, etc. CT follows, appears all clear. Follow-up visit to the ENT results in him shrugging his shoulders and wanting to send me to a neurologist to investigate trigeminal neuralgia... a positively absurd suggestion based on the kind of achy, sporadic pain I have. But which is a suggestion that, had I accepted it, would have resulted in how many hundreds (perhaps thousands) of dollars worth of tests and professional fees?
The upshot of all this cost and aggravation? My sinus still hurts, bleeds, and blocks up. My insurer was billed for $600 (yes, six hundred) dollars worth of office consultation fees to the ENT alone. I don't know yet what the CT and radiology fees cost. Several hundred more, no doubt.
I absolutely grieve for my insurer... For them to have had to reimburse this man such an ungodly amount of money in return for absolutely no help at all.
Insurance dollars are wasted every single minute of the day in ways so much more egregious than the cost of a few FT tests.
My apologies to littlebigeyes for hijacking her thread.
I'm not a bettor either, but if I were, I'd bet you work in the insurance industry.
I'd take that bet, too. I will be 62 in two days, retired from Information Technology (IT). In regard to my relationship with insurance, I pay far too much for it.
There is a lot of good info on this board and I found a number of links which helped me both understand my condition and also get better understanding about the disagreement between the traditional medical community and the newer alternative theories, the possible and even probable reasons why that might be. I drew my own conclusions.
This board has an established and popular message. I respectfully disagree with some of it, but know how much time it would take out of my life to be that unpopular voice. In the end we each have to look and learn, pick out the true and toss out that which is not, for us.
To the new ones, I'll just say I encourage you to take everything you read about all this with a grain of salt. If something you read concerns you, talk to your doctor about it. If you don't trust your doctor, find one you can trust.
I drop in now and then and suspect that will continue, at least until I am well enough to get out there and do things I haven't been able to do for years. If I learn something I think might be of interest to you all, I'll post it for your consideration. I just won't be standing up against an established message anymore.
All interesting, no need to apologize to me. The more I read the more I learn. I'm really a quite open-minded person and can see both sides. If I really get concerned about a health problem - I'll check it out w/out regard to cost, because no amount of money could pay for my health, so in that regard I'd guess I'm just like everybody else looking out for themself.
I really am quite happy they found it at 32 for me, and I can only hope to get better. With the way things are going now, I'd hate to think of the insurance situation in 30 years.