What is your TSH?
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It horrifies me how many uneducated endocrinologists who refuse to remain current with research there seem to be out there. The diagnostic criteria for hypothyroid recently dropped from TSH of 4.5 to 3.5 and is expected to further drop to 2.5 within the next few years. Yet, labs still list the old diagnostic criteria of 4.5 as the highest acceptable level. My understanding is that the golden number for TSH level is 1.0-1.9 relative to the resolution of the person's symptoms. There is no one size fits all. If your endocrinologist tells you otherwise, then it is time to find yourself a new one.
That is what I had to do. I had symptoms for years, and my mother nagged me to get checked for hypothyroidism since it runs in the family. I finally did, and my TSH was 4.96, but my GP didn't want to treat for such a slightly high number. I made an appointment with an endocrinologist that my friend recommended. Aside from having no bedside manner, he refused to treat me because I tested negative for the Hashimoto's antibody even though he acknowledged the my thyroid was dead because it showed dark and hard on examination and my TSH was still 3.25. He told me I just needed to loose weight, which is actually when I joined here. After months of shame and loosing twenty pounds without feeling better, I went to another endocrinologist. My TSH was back up to 4.25, and this is when she told me about the above diagnostic criteria and that some people, especially with strong family histories, can have nonspecific hypothyroidism with no known cause. However, she still wanted to treat me. My TSH was 1.9 last visit and we agreed to up my dose one final time to get the numbers lower in preparation for pregnancy.
Sorry to ramble, but my point to everyone here is that, if you know something is wrong, keep going to doctors until you find one that takes you seriously. Even if medicine isn't the immediate answer, acknowledgement that your concerns and symptoms are real is something a doctor worth visiting should do!0 -
It's unfortunate that many/most doctors based thyroid diagnosis and dosing based on TSH alone. TSH is NOT a good indicator of thyroid function - it's not a thyroid hormone (comes from your pituitary) and the very act of supplementing messes up the negative feedback loop between your pituitary and your thyroid.
Every set of lab work should include testing of free (not total) T3 and free T4, and dosing should be based on these levels.
"Normal" vs. "Optimal": it's also sadly all too common for doctor to say your levels are "fine" or "normal", when they are at the bottom of the range. You should be aiming for at least above mid-point, and ideally in the top 1/3 of the range your lab uses for free T3/T4.
As well, free T3 is the active form of thyroid hormone that does all the work - so even if your free T4 is normal you could have a low T3 and be symptomatic and technically hypothyroid. It's actually quite common, especially in people who are taking synthetic T4-only meds like synthroid and levothyroxine.
You should also get your Vit D, B12, ferratin and selenium checked on a regular basis, as these are critical in converting T4 into T3.
And everything artslady96 said above.
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I was at 3.8 forever and felt like crud. Finally convinced a doc to up the overall medication level by adding cytomel. Now I'm at 2.4 and feel much better. I don't know why these docs are so stingy with the thyroid meds. I mean, if "normal" is .5-5, why the hell not just treat it down to 2 instead of 4 if people still have the symptoms that brought them in for treatment in the first place?0
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That's great advice!
My TSH wasn't treated until it got to 7-something, and even then when I got referred to my endo, he told me I could just stop taking the levotyroxine, and not to be referred back until my TSH was 8 or above. I couldn't believe what I heard, levothyroxine was finally making me feel better and now they wanted to make me stop taking it! Thank god my GP told me I could keep taking it.
Weirdly enough, two months later I got my levels retested and they still looked high so my GP called my endo and he told her to up my dose from 25mcg to 50... Imagine my stunned face XD
Unfortunately I can't just choose another doctor since I have to deal with the national health system ;( i hope i can buy some private insurance soon0 -
In January 2011, after about a year of not being able to afford medications because I lost my job, I was tested at TSH 361 and Free T4 at .21 They immediately started my medications again (at the last dosage I was on) and started testing me again. I tested out at 1.28 in March so they left me alone. Then in August I was feeling awful again and asked to be tested, he only tested my TSH and it was 3.61... He didn't feel that needed a change in medication.
I still feel like crap but, lucky me! My levels are just fine so there's nothing to worry about, right? :mad:0 -
Just had mine tested. It's 1.5. I take 100 mcg of Levothyroxine.0
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It was 6.89 when I was diagnosed. Last test it was 2.64 and she wants to get it down closer to 1. I'm currently on 100 mcg of Levothyroxine. Hopefully next test will be closer to 1.0
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I started out at .25 Levo when my TSH levels were at 14; then I stabilized at TSH 3 for a year. Then I was bumped to .75 after I tested with a TSH back up to 8 this summer. Now I'm on .88 because with the jump I went from the 8 back down to TSH at 5 .
If I have to take this medicine for the rest of my life, will the amount of Levo. keep increasing? Does the body get immune or tolerant and the med stops working at the lower level?
And why would my TSH levels climb if I took my medicine faithfully (every morning at 4:45 with 8oz of water and waited 1.5 hour to eat)?
Anyone know? I need to ask my doc but I am just starting to formulate questions.0 -
I was diagnosed 6 years ago at TSH 6.6, then while taking levo continued to shoot up. TSH was at 50+ before it started to turn back down. Every 3-6 months the perscription was being upped. It hasn't been stable until ths year and I now run at a TSH 4.5-4.6 for the last 6 months on 325mcg of Synthroid.
If the thyroid is failing it may continue to decline in function over time. Some have also suggested that when introducing Levo or Syntroid the Thyroid gets "lazy" and doesn't work as hard. Don't know if I subscribe to that thought though.
I take mine at night, before going to bed and at least 3 hours after a mea/snack. I found it much easier to do then getting up in the middle of the night, or first thing in the morning. I am a creature of habit when it comes to breakfast, and I like my milk or kefir, and if I skip I am generally not feeling well untill I eat something. Since Calcium reduces the effectiveness of Synthroid or Levothyroxine I didn't want risk the effectivness if I didn't wait long enough. Doc said 30 Min, but I have heard others say 2 hours.
Almost everyone posting have in my mind firly low dozes of levothyroxine/Synthroid, I am wondering if anyone else is such a high dose. I am wondering what their experience was and what they are doing now. I have never been on armor but I am seriously wondering if the continued increase of Synthroid is a dead end.
There are so many symptoms related to HypoT, but the once I experienced where weight gain and difficulty loosing weight. Despite strict diets and execise. Cold, though at the moment I only feel that at night or after exercise. Joint aches that are worse in the mornings and not in the eveing. Itching, it drives me nuts and moisturisers help but doesn't remove it.
What I have not experienced is depression, complete fatigue, and other mood related disorders. Well, none that I attribute to Thyroid function anyway. :-)0 -
Mine is 0.01 and no one can tell me why I cant lose weight!! Very frustrated, as I was once very hyperthyroid, but ive never been skinny. I was off meds completly for many years, then was told i was slightly hypo thyroid, and put on 1 mcg....I was feeling good on this, but now they tell me im normal, i am FAT unable to lose weight despite excercising and eating well (not lately).......Im at my wits end and so incredibly frustrated its ridiculous!
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If you're on Facebook there is a group run by Gena Lee Nolin called Thyroid Sexy. There is some AWESOME research/doctor/med info on that site.0
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Hi
My TSH is currently 0.2 and my Endocrinologist said not to let it go above 2.
I am on 175mg and 200mg alternate days. If the GP changes it back down to 175mg my TSH goes up to 9.8!
However, no matter what does I am on I still feel exhausted and rubbish
Vicky0 -
Hi
My TSH is currently 0.2 and my Endocrinologist said not to let it go above 2.
I am on 175mg and 200mg alternate days. If the GP changes it back down to 175mg my TSH goes up to 9.8!
However, no matter what does I am on I still feel exhausted and rubbish
Vicky
I would suggest that you get your free T3 and free T4 levels tested. TSH is a terrible indicator of thyroid function since it's a pituitary hormone (and not a thyroid one), and can also be quite supressed in people supplementing. If your doc won't test free T3/T4, I would find a new doctor.0 -
Sadly no GP in my area will look at T3 because the Endo says it's an unreliable result and the treatment untested. But the labs in my area refuse to test for it! All my other tests have come back normal :-(0
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I just got my results back, tsh is 0.04 & my t4 free is
0.92, I feel like crap and they are telling me im hyper, I feel very hypo
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Mine is 0.01 and no one can tell me why I cant lose weight!! Very frustrated, as I was once very hyperthyroid, but ive never been skinny. I was off meds completly for many years, then was told i was slightly hypo thyroid, and put on 1 mcg....I was feeling good on this, but now they tell me im normal, i am FAT unable to lose weight despite excercising and eating well (not lately).......Im at my wits end and so incredibly frustrated its ridiculous!
You can GAIN weight with hyperthyroid or have just as many metabolic issues. My endo says it's kind of a common misconception that having a super low TSH means the weight will melt off. If it's not a proper TSH for your body, metabolism and other hormones can suffer.
I felt good at a slightly lower TSH than normal... then ended up, because of thyroidtoxicosis (too high of a thyroid dosage for too long), I had a TSH of 0 and ballooned up more than twenty pounds because of high cortisol on top of it. I know you can feel awesome having higher energy, especially if after having dealt with all the crumminess with hypo, but it's possible you're not doing yourself favors staying at a dose that makes you at 0.01.
Because a TSH of 0.01 ISN'T in the normal range, but I know of several endos who will let higher or lower TSHs slide because of patient response (as in, you feel better, so they let it slide).
But I'm not sure what your actual dose is, or what your meds are. 1mcg? Of what?
Plus, you admitted you haven't been eating well lately... eat well CONSISTENTLY for awhile and see if there's a change at all.0 -
I've finally reached hypo levels after battling being hyper for 3 years. Current TSH is 100, T3 is 1.62, T4 is less than 0.25, and Vitamin D level is 16. I've started synthroid at 125 and get rechecked in 6-8 weeks. I feel every ounce of the crazy hypo levels from 'the dry scratchy hoarse throat to the dry itchy skin including my eyes. Vision is impaired, joints ache, and muscles feel like slugs and I couldn't be happier to be honest. I've been so far to the other end being hyper that this almost comes as a relief. I know what I am looking at, I know what to expect. I feel like for the first time in several years I have control.
I know it's going to take time and patience has to be my middle name or even my first name but I know I can get to a comfortable, liveable and close to normal existence again for me.
Jan0 -
I was at a 7 when I was diagnosed. I had my whole thyroid removed within a year due to nodules and Hashimoto's disease. I have been just above a 1 for about 3 months alternating between 175 and 200 mg of Synthroid. They recently added 10 mg daily of Cytomel.0
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YIKES!!! You are insanely hypo, I don't know how you're awake enough to type.
You should be taking some high Vit D to get those levels up! I'm currently on 4000 IUI because I'm only at 40. I'd encourage you to take a high dose (in consultation with your doctor) to get that up.I've finally reached hypo levels after battling being hyper for 3 years. Current TSH is 100, T3 is 1.62, T4 is less than 0.25, and Vitamin D level is 16. I've started synthroid at 125 and get rechecked in 6-8 weeks. I feel every ounce of the crazy hypo levels from 'the dry scratchy hoarse throat to the dry itchy skin including my eyes. Vision is impaired, joints ache, and muscles feel like slugs and I couldn't be happier to be honest. I've been so far to the other end being hyper that this almost comes as a relief. I know what I am looking at, I know what to expect. I feel like for the first time in several years I have control.0 -
I was at 3.8 forever and felt like crud. Finally convinced a doc to up the overall medication level by adding cytomel. Now I'm at 2.4 and feel much better. I don't know why these docs are so stingy with the thyroid meds. I mean, if "normal" is .5-5, why the hell not just treat it down to 2 instead of 4 if people still have the symptoms that brought them in for treatment in the first place?
"Normal" has actually been .3-3.0 since 2002, but many/most doctors in the US don't seem to be aware of this. It should be dropped to 2.5 in the near future, with many educated thyroid doctors arguing for the top to be 2.0.
Honestly, they are just really uneducated, because they don't have a lot of time to keep up with more than one or two areas of research. So they think that 3.8 is ok.
Even testing and dosing based on just TSH is insane. It's not even a thyroid hormone, and there are now tests to accurately measure thyroid hormones (T3 and T4).0 -
I'm at 4.8
This is VERY hypo, hopefully you are getting properly treated.0 -
Shivits,
My Endo put me on 1 Grain of Armour, then Cytomel once with the Armour in the AM. Last visit he added another Cytomel for the afternoon. I'm curious, do you eat at regular hours and have any trouble remembering to take the Cytomel in the afternoon. I don't always eat at the same time and have a hard time regulating the meds. How do you handle the time frames for your meds??.
It is very strange for a doctor to add cytomel on top of Armour. This is because pig thyroid actually already has more T3 than humans naturally make. So on Armour, you really shouldn't need MORE T3. I worry that your balance may be way off.
Instead of just taking more T3 in the afternoon, why not split your dose of Armour between the two times of day?
Wow, I agree - there should be no reason to add cytomel to Armour??
Have you had your free T3 and free T4 tested? What were the results?0 -
2 months ago my TSH was at 4.23 and was put on meds at 25 mg just was retested and all other numbers are great and TSH has dropped to 3.31 but the doc says he really would like to see it in the 2-3 range so he upped the dose to 50mg and I go back for testing in 6 months...only thing I have noticed is that I am not as tired... 0
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My TSH was 1.4 a few weeks ago when I visited my endocrinologist. I feel pretty good, so we are holding my dose steady at 75mcg Synthroid for now. Began my journey at 4.5 feeling like garbage.
I agree with other posters; find a new endocrinologist if he/she won't take how you feel into account when adjusting meds.0 -
These days my TSH is .5 or less. But TSH is really not the right way to measure thyroid function. TSH is a pituitary hormone, not a thyroid hormone. It is more important to measure thyroid hormones, like Free T3s and T4.
Unlike some people, I started seeing positive results with NDT right away. The T3 definitely kicks in pretty fast. I use my NDT sublingually, which may be why I got quick results. Synthetic T-4 only treatment did not work for me at all, it actually made me worse.
This has been exactly my experience. I haven't found an endo to treat me so I'm being treated with a Nurse Practictitioner who also has Hypothyroid so she's in treatment herself and understands first hand what you go through being hypo. She checks everything. Since being on natural thyroid hormones my hair has been growing. I have all these little wild hairs all over the place because they are too small yet to lie down but I love it because it means in time I'll have a full head of curls once again. I'm really happy with my current treatment. I was last checked in August. My TSH was about 1. something. I can't check right because my personal email is blocked on this computer but my TSH is down by a lot.
I would say that you try to find a doctor who is open minded about treating you with symptoms as they did back in the day. For me it doesn't matter how "stable" synthorid may be compared to other meds...the truth of the matter is I feel normal and better with natural hormones. I think the T3 is responsible for that.0 -
My TSH is 12.50
