I just wonder what you guys thing about this...
I've posted about having suddenly gained some weight recently for no apparent reason. My doctor thinks it's MY fault, of course, by I KNOW it's not. Now, that few lbs. have turned into a few more despite my exercising more, (and it's NOT just more muscle, the fat's still there, or water or whatever,) and eating less/better. I've gained about 20 lbs. now since last January. THIS IS NOT NORMAL AT ALL FOR ME. A five lb. weight gain is almost not normal for me.
I had all the thyroid stuff done, not just the TSH, which was only 1.44 a few months ago, and the others were normal, but I just had that done again and the TSH NOW is 3.09, which it's NEVER been. My cortisol was normal, and my fasting glucose was 92, the highest it's ever been, too.
I've read that by some standards, 3 is the cutoff for TSH...if you were me and gaining weight for no reason, losing hair, (clogged our new tub 2 times since Sept. and it's not even to my shoulders!) etc., would you see an endocrinologist?
I'm not on any new drugs, or any for sjogren's yet,except Restasis, other than that, just morphine, topamax and zoloft. Until last year, when my parotids and submandibulars started to become chronically swollen and my eyes got blurry/dry, I had no other drying symptoms from those drugs. NOW, my skin is EXTREMELY dry, my eyelashes fall out, (even before Restasis,) etc. so I'm pretty sure it's not the meds.
Hi BeBe, The TSH numbers that you posted are all within the normal range. Everyone is different, but most places I have had mine tested use 0.4---5.0 for the high and low normal range. You could call the lab at the hospital and ask what range they use.
There can be many reasons for weight gain and of course food and exercise are the two main ones. I don't know what age you are or if you are menopausal which is another time for weight gain. You might find that getting a referral to an endo would give you the answers that you need. If you can't find any reasons than I guess you might as well join my club. The club where the weight just seems to find me. I hate it and have such a time with food aversions that it is terrible trying to eat a decent meal. Good luck and let us know what you find out. Irish ;D
Quote from: irish on May 13, 2009, 10:37:13 PM
Hi BeBe, The TSH numbers that you posted are all within the normal range. Everyone is different, but most places I have had mine tested use 0.4---5.0 for the high and low normal range. You could call the lab at the hospital and ask what range they use.
There can be many reasons for weight gain and of course food and exercise are the two main ones. I don't know what age you are or if you are menopausal which is another time for weight gain. You might find that getting a referral to an endo would give you the answers that you need. If you can't find any reasons than I guess you might as well join my club. The club where the weight just seems to find me. I hate it and have such a time with food aversions that it is terrible trying to eat a decent meal. Good luck and let us know what you find out. Irish ;D
Thanks for posting- I should have prefaced my post with the following. When I say "I don't know why," I mean I've already exhausted ALL the other possibilities including hormones, I had those tests, too, and though I'm 45, I'm nowhere near menopause yet according to my gyn. Weight gain even AFTER menopause doesn't run in my family, either. All thin.
I know ALL of the reasons and none makes sense...
However, it seems odd that my TSH jumped 2 whole points in 3 months. And actually, though the lab lists up to 4 as "normal," there have been new guidelines out by some endocrinologist groups that suggest that 3 should be the highest cutoff because the groups used for to obtain this range DID NOT include people who were predisposed to thyroid problems. If you include that group, you get a higher average number for "normal" because those people aren't normal.
So really, normal SHOULD be under 4. The debate about using this range is ONLY because they feel that if they do, then they'll have to "treat" even unsymptomatic people just because of the lower number
I, on the other hand HAVE symptoms that could be from thyroid besides weight gain...
I just wanted to know if anyone's had a jump like that in their result?
Bebe, my TSH ranges from 0.2 to around 3.0, all within the normal range, and all considered normal fluctuations because the body's production of and need for thyroxine isn't static, it changes on a day to day basis. I always found this particularly strange for me, because I had my thyroid removed 35 years ago and my dose only changes based on blood work, and that is rare! Apparently in my case the fluctuations are all down to changes in requirement.
The normal ranges have recently been reviewed, and the "new normal range" according to the American Association of Clinical Endocrinologists, is 0.3-3.0. My Endo has always said he'd investigate any TSH over 2 if the patient was symptomatic.
Another thing to consider, if TSH and T4/3 are normal, is that you might have central hypothyroidism. In central hypothyroidism, the thyroid gland is underactive. As a result, the blood level of thyroid hormone is too low, at least part of the time. But the cause of the underactive thyroid gland and low thyroid hormone level is not an abnormality of the thyroid gland. Instead, the cause is a dysfunction of the pituitary gland or hypothalamus. When a patient's standard thyroid test results are normal, and the patient is symptomatic, the doctor could probably consider the possibility of central hypothyroidism. The best way to test for this form of hypothyroidism is the TRH stimulation test. This test can identify many patients who are clinically hypothyroid, although their standard thyroid test results are normal.
I think you are well within your rights to ask for an endo referral.
Hi BeBe,
Linda explained it so well! My endo uses the .02 - 2.00 scale, but she has said that some people with a higher number might be all right at that level. My TSH never went above 5.00 (the old scale was .05 - 5.50), and I had the hair loss, the sudden weight gain, the usual symptoms; and yes, it was all blamed on me. Finally saw an endo and he put me on Synthroid (Levoxyl that is) and I've been on it for almost four years now.
If you feel your symptoms are not normal for you, talk to your doc and see if he will refer you.
Hang in there and keep us updated -
Take care -
Patze
BeBe
You might also have your thyroid antibodies tested. My TSH rose to 3.53 from the 1 range and when I had the thyroid antibodies test done my antibodies were way wacky. At any rate, I'm now taking Synthroid and doing fine.
Hi BeBe :)
My endocrinologist has instructed my GP to keep my TSH at 2 or below. She says that some people just feel better when they are mid range or below. I know I felt ill when mine was 5. every bit as bad as I felt when it was 42.
Did they test yiour free T4 and free T3 because if TSH has risen those numbers also come into play. I would certainly be inclined to get the doc to do regular blood tests if TSH seems to be rising because it can go up really fast. Mine went from 7 to 42 in a month once.
Some of the symptoms you describe could certainly be attributed to an underactive thyroid - but other things can cause them as well. An underactive thyroid tend to cause cholesterol to rise too.
Take care - Scottie :)
Thanks for all your imput! Luckily, I don't need a referral for an endo. This was my GPs last "chance" with me. He didn't even notice that my number changed significantly since the last time he had the test, just a couple of months ago. It's never been this high, in fact. My cholestrol changed, too, but it's lower overall than it was. My HDL went down 20 pts. though, which was why it was lower, and doesn't make sense since I'm no less active than I was last time I had it done. (And I've been eating the same.)
I had all the other thryroid tests done last time and they were all normal, but this time, he ONLY did the TSH because he really didn't think it was that anyway. Honestly, I don't think HE even looked at the report or if he did, he only saw the "normal" written on it by the lab, he didn't go through and look at the breakdown. I never even spoke to him about it. In the past, other doctors were always testing my thyroid because they always thought it was too HIGH because I was always kind of underweight...and I mean in the RECENT past. That's another reason why THIS is significant, along with the weight gain...and the hair loss...I have pretty much all of the symptoms, but many are some that overlap with stuff I might've had before, like really dry skin...it has gotten worse, though.
I'm just going to go to an endo and let that doctor sort it out!
BeBe:
Please check out this website www.stopthethyroidmadness.com
Ask for the antithyroid antibodies test for Hashimotos - it is not part of the standard panel and they won't give it to you unless you ask - Also, find out what your free T3 level is - that is what will determine how healthy you feel NOT the TSH level.
All your symptoms seem to point to Hashi's to me - tell your doctor to treat the patient, not the paperwork.
Sue
I had the T3 a few months ago, and all the other stuff. It was all "normal" then, but like I said, now, according to my GP and this lab, it's STILL normal though the number has nearly tripled since the last time. Looks like it's not normal now, though, according to endo guidelines.
Just waiting to get that appt. now...
FYI
TSH thyroid levels use to be considered normal if they were under 5. Recently they have changed the stander to between .1 and 2.5. So anything over 2.5 is considered hypo. Many Doctors do not know of the new changes sadly.
Kimi (Thyroid cancer survivor)
TSH is done with immunoassay reagents. The normal range depends on the reagents used to run the test. That is why different labs give different normal ranges. You can always ask your DR to rerun the TSH test.
Tuckerdog
While test ranges can vary because of different testing practices, most vary b/c the testing companies don't know about the change in range (honestly, I suspect that's the only reason for the differences).
You can find the AACE press release about the range adjustment at http://www.aace.com/public/awareness/tam/2004/tsh.php You may want to share it with your doctor. My GP is awesome, but I suspect that having the official statement in hand helped him trust what I was telling him. As a result, he has changed how he treats ALL hypothyroid patients and thanked me for improving his other patients' lives; he says they feel much better now.
The fact that you already know that you have one autoimmune disease means, unfortunately, that you are likely to have others. I agree with SJenny that an antithyroid antibody test (a.k.a. thyroid peroxidase test or TPO) would be a good idea for you.
What's important to remember is that we are talking averages here. What's normal for most people may not be normal for you. When I was diagnosed w/ Hashimoto's, my whole body had gone arthritic. My TSH was only at 5.6, just barely out of range for my testing facility's outdated 0.5--5.5 range. But everyone responds differently. I feel best when my TSH is under 1.5. Anything above 2, and I'm sick. Fortunately, my doctor is pretty comfortable letting me call the shots on my treatment, so I don't have to wait until I'm a total mess before we up my meds.
I always think that, in these situations, it's good to think about why the doctor might be hesitating. Doctors, as you've seen, are cautious when it comes to thyroid meds. Not so long ago, doctors prescribed them to treat weight gain. They worked well, but set people up for a host of health problems. Unnecessary thyroid meds are a bad thing. Unfortunately, some people still wanted them for weight loss and would push doctors to prescribe them when it wasn't appropriate. So, your doctor may be hestitating because he fears that you are simply trying to get a quick weight loss solution. Doctors have been taught to treat patients only until they are JUST in the normal range to avoid encouraing abuse of the meds and to avoid the health issues that came with incorrectly prescribed meds. My doctor explained all of this to me when I talked to him about the AACE range change. Of course, this approach forgets about individual needs and about the fact that, so long as we are kept in range, hypothyroid patients aren't going to have the problems that healthy people on thyroid meds would.
Try emphasizing your other symptoms. You may want to use the checklist at http://www.mayoclinic.com/health/hypothyroidism/ds00353/dsection=symptoms (as always, stick with the "professional" sites; the thyroid.about.com site has great information, but it isn't run by a doctor so doctors don't trust it) and keep a health journal so that you can show your doctor evidence of your problems (you'll need to think about your doctor on this one, though; some are suspicious of patients who are too focused on their health).
I hope that you are able to figure out what's going on soon.
Best wishes,
C.
Dragonfly,
In the US when a certified lab changes to a new immunoassay the ranges are changed to match the published ranges supplied with the reagents. In order for the normal range to change on an immunoassay like TSH, the lab must switch methodologies, they can not just switch the normal range. (Assays are developed with increased sensitivity at the edges of the normal range). Since the narrower normal range was recommended 5 years ago I doubt that any lab is still using the old reagents because the are probably no longer commercially available (shelf life on reagents is usually in months, not years). I can tell you that labs do exhaustive comparisons when new methods are introduced comparing values obtained from the current method to those obtained with the new method. While labs can and do make mistakes they are often blamed for problems that were caused by other healthcare workers.
Tuckerdog
Quote from: tuckerdog on May 17, 2009, 12:18:33 PM
Dragonfly,
In the US when a certified lab changes to a new immunoassay the ranges are changed to match the published ranges supplied with the reagents. In order for the normal range to change on an immunoassay like TSH, the lab must switch methodologies, they can not just switch the normal range. (Assays are developed with increased sensitivity at the edges of the normal range). Since the narrower normal range was recommended 5 years ago I doubt that any lab is still using the old reagents because the are probably no longer commercially available (shelf life on reagents is usually in months, not years). I can tell you that labs do exhaustive comparisons when new methods are introduced comparing values obtained from the current method to those obtained with the new method. While labs can and do make mistakes they are often blamed for problems that were caused by other healthcare workers.
Tuckerdog
If I'm understanding what you're saying correctly, then that doesn't explain why the paperwork with my test results had the TSH range from .4-4.0...shouldn't it be either the old one or the new one?
You have to go by the normal range posted by the lab that ran the test. The normal range is specific to the methodology used for the test because immunoassays are dependent on the specificity of the antibodies used. What the normal range means is when that methodology was set up they tested a very large population of people and 95% of people tested with that methodology did not have symptoms of low thyroid using those that methodology. If the population shows a Gaussian distribution, that is typically how reference ranges are established. Cross studies are run between methodologies. A sample that is in the normal category run by one method should also be in the normal category run by the second method and visa versa. The immunoassay with the narrower normal range is now preferred but for determining if a result is normal or not you have to go by the published reference range for the methodology used for running the test.
To answer your question directly, there are several methodologies for any lab test so the one used for your test is just another methodology, not one of the two referenced by Dragonfly.
TD
Tuckerdog is correct that lab methodology determines the ranges they use, which is why your lab uses 0.4--4. That doesn't mean, however, that it's necessarily OK that you are on the high end of the normal range. It's a range based on averages, but an autoimmune condition can create a slightly different situation than that faced by your average, healthy person.
Most important, BeBe, is how you feel. The thyroid is sensitive, especially for those of us with autoimmune thyroid diseases. We generally need to stay on the lower end of the normal range for TSH (regardless of the range used by the lab). I really think that you should ask your doctor for a TPO test. If your thyroid is being attacked by your body, it may be affecting you in ways that the TSH test doesn't reveal. It would also give you a better picture of what's happening. If your antithyroid antibodies are normal, then you can start looking at other potential causes. Even SJS can cause a lot of weird symptoms, as can other autoimmune conditions. As I said, if you have one, it's not unusual to develop another.
Now, a person's TSH level can change, even within the course of a day. A jump from 2 to 4 within a few months isn't shocking. Scottie's experience of a TSH of 42 isn't even the highest I've heard of. That said, Patze and I both got quite sick with TSH levels right around 5. I've heard of doctors insisting that people can't be sick with TSHs under 11, but my doctor's first diagnosis of me (before seeing my TSH of 5.6 and my high antibody levels) was that I probably had R.A. so bad that I'd be in a wheelchair within three years because I could barely move when I came to see him. Only my antibodies revealed the whole, and thank goodness better, story.
I agree with Dragonfly. I never had any idea how badly one could feel from a thyroid problem. I have been on both ends of that stick. First my thryoid was too low and I was tired all the time and my skin was dry and there were cracks on the skin of my feet, bbut my mind was ok. Then a bad prescription sent my thyroid over the top. My TSH went to zero (that means my thryoid concentration was too high). Talk about brain fog!!! I couldn't think, I was hot all the time, tired all the time and I was very depressed - thinking I was getting sicker with SJS. I was at the point where I thought I would have to be put in a nursing home for dementia because I was so confused. Once the thryoid was adjusted I felt a whole lot better. Thyroid is powerful.
Tucker
I've gained a little weight too I think but I blame it on my new love of Eskimo Pies.