normal TSH

[Radha]

have any of you had symptoms of thyroid problems but had normal TSH only to find out you really did have a thyroid problem? i have alot of symptoms of hyper, but normal TSH and wondering if its worth pursuing, i used to be cold all the time, now i'm so hot! and i'm even skinnier! thanks for any input

radha

[morgan617]

All I know is that they have been trying to change the parameters for a long time. Most researchers feel the parameters are too wide and a tsh of 2,5 or higher should be treated. Right now it's at 5! That's a huge difference. Mine is about 2.9 so it would be interesting to see what some meds would do. morgan

[ramakentesh]

For many months i was suspected of having an overactive thyroid and i was rigourously investigated as i have a strong history of thyroid disorders in my family.

I had hand tremors, weight loss, eye pain, heart palps and a whole host of other symptoms - and then they found nine nodules on my thyroid and my thyroid hormones were found to be elevated twice out of about five tests. My TSH was always normal. I was also dizzy and spaced out as well as cold rather than hot.

I went to three endocrinologists and they all said the same thing - its not your thyroid. Eventually i was told that POTS activates the same thing that an overactive thyroid does - the excitation of the sympathetic nervous system - causing overactive reactions, weight loss, tremors, anxiety, etc.

The fact that i was dizzy and cold rather than hot was indicative of it not being my thyroid, although peopel can get POTS symptoms from adrenal excitation due to the thyroid.

Laslty they are revuing the TSH levels to move it from 0.5-5.0 (the higher the TSH the more underactive, the lower the more active) to 0.3-3.0.

My TSH was as low as 0.5 which means that it was very close to the magic figures for being overactive - a TSH over 2.8 is usually an indication that the thyroid is moving towards becoming underactive rather than overactive. An overactive thyroid usually has VERY low TSH levels - as in as low as 0.001.

[Guest GayleP]

You can still have thyroid problems with a normal TSH. My TSH was low normal, not off the charts but low enough to suggest that I could be hyperthyroid. My HMO refused to treat me although I had the hand tremors and weight loss. They wouldn't treat me because it wasn't way below normal low.

I finally went to a good endocrinologist who after doing a scan saw that I had subclinical hyperthyroid. If I had listened to my HMO I never would have received treatment based on just my TSH.

MY sister in law had a perfectly normal TSH but all the symptoms of hypothyroid. She went to several different doctors who ignored her and said she was fine. Finally, a good endo did major thyroid testing on her, a full panel and scans and sure enough she has Hashimotos.

If you feel like your thyroid isn't right then you should make sure you are getting all the tests you need and that you have a doc who will listen to you.. Oh, and the radioactive uptake scan is the correct scan. My HMO did a scan but it was so oudated that it told nothing.

[RunnerGirl]

Radha: It's very important when testing thyroid function to look at not only TSH (which is actually produced by the pituitary gland and signals the thyroid to either increase production or decrease production of thyroid hormone) but the actual level of thyroid hormones in the blood. Did they test your free T4 and free T3 levels, which are the actual values of thyroid hormone in the blood? A complete thyroid panel is essential to rule out thyroid-related illness. I would also recommend testing for thyroid antibodies. I know several people who tested normal for thyroid function but had elevated antibodies. They eventually went on to develop autoimmune thyroid disease.

Good luck and keep us posted. I have been on a thyroid rollercoaster (I have Hashimoto's hypothyroidism) for many years, so I know a little bit about testing and whatnot.

RG

[blackwolf]

Just a note. My mom has no thyroid ( surgically removed with cancerous growths) and takes synthroid. She is regularly tested and is most comfortable at the very top range of normal to slightly elevated. I run low and like it that way.

Normal to one person isn't normal to someone else.

Blackwolf

[Guest Julia59]

I have hashemotos thyroid---hypo-thyroid. I went to a gyno vist---and the nurse practioner did some thyroid blood work because it ran in my family. Well, she said it was slightly elevated. She told me I should see a endocrinologist. I did, and that is when he found the hashemoto's. This is an autoimmune disease that destroys your thyroid gland over time.

When I went to another cardiologist to get a stress echo done recently he told me that I should always keep my thyroid in check----because it will mess with POTS. He said if your thyroid is not functioning right---then you may as well forget trying to treat the POTS because it will do no good. He said that one affects the other. He is also starting to specialize in seeing patients with POTs and NCS mainly, but I think he has seen patients with other forms of ANS dysfunction.

Julie :0)

[RunnerGirl]

Blackwolf:

Very good point. I know I feel 'hyper' when I'm in the high range of normal (for free hormones) and the low range of normal (for TSH). Other women report feeling dibilitating fatigue with numbers that make me feel just fine. Thyroid hormones are incredibly powerful and a small change in dose can mean a big change in labs and symptoms. I found this out the hard way, swinging from hypo to hyper many times. This is especially true in autoimmune thyroid disease, where our gland functioning can wax and wane over time. My GP used to try to chase down my TSH, but now we just go by how I feel and where my free hormone levels are. If they are in the normal range, even with an elevated TSH, we usually just keep my med levels unchanged, unless I'm feeling poorly.

I have often wondered if my POTSy symptoms (chiefly an erratic heart rate and BP) have more to do with my quirky thryoid and the meds I take than any real malfunction of my autonomic nervous system.

Best wishes to all dealing with thyroid issues on top of ANS symptoms!

RG

[MomtoGiuliana]

I also have Hashimoto's as well as POTS. Everyone has made good points. POTS symptoms and hyperthyroid symptoms can be similar--e.g., tremors, tachycardia, feeling over-heated, weight-loss. Normal TSH is a range of values, but what is normal for one individual will not be for another. I feel best when my TSH is below 2.0. If your TSH is on the high end of normal, some endos will do a trial treatment to see if that helps your symptoms (without bringing your TSH below normal). This would be after also looking at a thyroid panel--not just the TSH.

I have had rather variable thyroid activity since diagnosis. This worsened during pregnancy and post partum, and I had to have a few readjustments. I am sure this played a role in my POTS symptoms. If you have POTS, I think a doctor will be even more cautious in increasing your dosage to bring TSH down, if it is already in the "normal" range.

Katherine

[Radha]

thanks so much for all the input, i will try to get my doc to get the t3 and t4 tests done, mine is 1.3, and well i have so many symptoms of hyper, thanks again for replying, i really appreciate it,

radha

[calypso]

I have EVERY symptom of being hyperthyroid -- but I am not. At least, my TSH is in the 1.6 range. I don't know if I had other values tested. It certainly sounds like you have a metabolic issue if you are still losing weight, having tremors, etc.

Hope you are getting good care from an endocrinologist.

Amy

[ramakentesh]

Most endocrinologist will accept the possibility of subclinical hypothyroidism but not subclinical hyperthyroidism unless the TSh is below 0.3 - mine went as low as 0.5 with free t4 being 19.9 (range 9-19) and three seperate endocrinologists all were emphatic that i did not have a thyroid disorder despite having nodules and all the symptoms. My antibodies tests were low though.

In the end it turned out to be pots rather than an overative thyroid, but my symptoms were very similar as the same mechanism is overactive in both - the sympathetic nervous system.

[MomtoGiuliana]

ramakentesh--exactly what I was trying to say--"Most endocrinologist will accept the possibility of subclinical hypothyroidism but not subclinical hyperthyroidism." I think it's good to ask for the panel but if your TSH is above 0.3, I think you can be very assured you do not have hyperthyroidism. If your TSH is less than 1.0 it would make sense to keep an eye on it once in awhile to make sure nothing is developing, I would guess.

I agree with calypso that other metabolic causes would be worth looking into if you are losing a lot of weight. But, also keep in mind that weight loss is common with POTS flare ups.

Katherine

[ramakentesh]

there is so much doubt among thyroid patients about their endocrinologists- they have all sorts of trouble - so maybe medicine is getting wrong.

[RunnerGirl]

<<there is so much doubt among thyroid patients about their endocrinologists- they have all sorts of trouble - so maybe medicine is getting wrong.>>

I definitely think at least some of the doubt stems from doctors' looking only at lab values and making treatment decisions on these alone, without also considering how the patient feels. I'm speaking in particular of those who have been diagnosed with thyroid illness. My TSH levels - since beginning treatment - have always been quite erratic. Intially, my GP would adjust meds based on my TSH reading. When I went from a normal 3.0 to a 13.7 in a few short weeks, and was suffering from HYPER symptoms, not hypo as you'd expect with such a high TSH reading, she increased my meds. Well, I became MUCH worse - lots of tachy, anxiety, insomnia, etc. My free T4 levels were at the high end of normal, even with my elevated TSH. We now look at what the free hormone levels are before making any decision about medication adjustment. I ran a marathon earlier this year after a my TSH around 11 - so obviously I wasn't suffering from any particular hypo symptoms at the time! In time, my TSH, with absolutely no med adjustments, came back down to 1.4. I am so glad we didn't up the meds to address my elevated TSH!

The issue of subclinical hypothyroidism is still controversial in my opinion. I think too many patients probably hear that a sluggish thyroid can make one fatigued and prone to weight gain. But when nothing clinically supports the diagnosis of hypothyroidism, I don't believe thryoid supplements should be given. Fatigue and weight gain are too often the product of the way we live, and not directly attributable to a medical condition. What is more, by treating thyroid based on no clinical evidence, it could distract the doctor and the patient from seeking out the REAL cause of fatigue, weight gain, or other symtpoms when, in fact, they are attributable to another true medical condition (ie, CFS, POTS, depression, GAD, you name it!)

So, from my little soap box speech, you see I'm a fan of treating on symptoms AND labs! Doctors who look at one and not the other can certainly frustrate me!

RunnerGirl (forever on the TSH rollercoaster!)

[MomtoGiuliana]

Runnergirl--I couldn't agree more.

There is a controversial (to say the least) diagnosis called Wilson's syndrome. It's basically "hypothyroidism without the lab values to support the diagnosis". It has resulted in inappropriate prescriptions of synthroid and morbidity and mortality associated with that.

I think, regarding doubt of thyroid patients about their doctors (ramakentesh's last post), that some to many doctors still rely completely on the TSH and keeping it in the normal range, with no regard to attendant symptoms.

Katherine

[RunnerGirl]

Katherine:

<<There is a controversial (to say the least) diagnosis called Wilson's syndrome. It's basically "hypothyroidism without the lab values to support the diagnosis". It has resulted in inappropriate prescriptions of synthroid and morbidity and mortality associated with that.>>

Thanks for posting this. I actually came across a reference to Wilson's Syndrome when I was researching my own thyroid problems a while back. I know how I felt when I was slightly overmedicated for my hypothyroidism, and I would NEVER want to be prescribed Synthroid (or any other exogenous T4 or T3 meds, for that matter!) if I weren't certain of my diagnosis and my body's need for supplementation. While I can sympathize with patients who are desperate for a diagnosis, a CAUSE for their troubling symtpoms, the risks of taking exogenous thyroid supplements when they are not needed are certainly not inconsequential, as you point out. Bone loss, cardiovascular complications, etc. I actually stopped frequenting one particular thyroid disease board because I felt like the tone of the board was too much of the "if you're tired and overweight, it MUST be hypothyroidism, and your doctor is evil if he/she won't give you thyroid meds!" variety. (Needless to say, my pointing out that I'm nearly 5'5" and weighed 111 pounds at the time of my diagnosis with hypothyroidism didn't exactly go over well there! :-) )

As a bit of an aside: I lurk more than I post, but I always enjoy your thoughtful responses and insights, and I'm often struck by the similarity of your POTS experience and symptoms to mine. That we both have Hashimoto's is also of interest. I'm glad you've progressed so much since the onset of your symptoms and I hope you continue to have happy, healthy days ahead!

Regards,

RunnerGirl

[MomtoGiuliana]

Hi Runnergirl

Thanks for your response to mine. I've encountered the same thing--I was on a listserv, mostly as a lurker, years ago, for thyroid patients. A lot of the discussion revolved around--"I'm still tired and overweight yet my doctor says I am treated, or, my doctor says I don't have thyroid disease." At 135 lbs and 5'10" it was also hard to relate--yet, I knew in my case something else was going on (which turned out to be POTS, not inadequate thyroid treatment.) SO, just to reiterate what you have said--there are other causes for thyroid-dysfunction-like symptoms besides thyroid disease. And I think it is a terrible disservice when "pracitioners" promote thyroid dysfunction as the explanation for symptoms that are probably caused in many cases by something else.

Yes, I have also been struck by our similarity of symptoms--particuarly that you have also said your thyroid function is highly variable.

Thanks for your well wishes--I really appreciate that!

I hope your symptoms remain mild and recede with time. The fact that you are

highly conditioned will help, of course!

Katherine

[EarthMother]

I am so glad I "lurked" tonight and found these posts. I am also one of the Hashimoto-POTS people who traveled a very similar road to ultimately find a doctor I can work with on all counts.

In fact, just last week I sat down with him and said that I felt my .5 TSH was really a bit too low for me ... that I felt shakey on my 100mcg synthroid and maybe it was too high. I asked to re-test and to include all of the free t3s and 4s and look to see if there were any other signs. He agreed and wrote up a blood test slip for me -- but as he handed it to me said "You know even if the lab results don't come back supporting too high of a dose ... if you still 'feel' off we may want to try lowering the synthroid regardless." Can't beat that in an MD.

Good luck to all on your healing journey.

EM

[MomtoGiuliana]

EM--That's great--wish we all had doctors like that--who are willing to evaluate the patient as well as the lab values within the "normal" range. My endo is also willing to cooperate with me in that regard. I don't feel well unless my TSH is between 1 and 2, or so.

Katherine

[Radha]

could you have a normal T3, T4, and normal TSH, but still have elevated thyroid antibodies? thanks

radha

[EarthMother]

Most certainly. The elevated microsomal antibodies are just telling you that your body has decided to lauch an attack on your own thyroid gland. They don't tell you if how successful the attack is. In fact, Hashimoto patients can show high antibodies in their 20's but will not show any signs of sluggish thyroid until into their 40's and 50's.

Actually sometimes your antibodies can be really high -- but you feel great. And other times your blood work can show NO SIGN of antibodies and you feel miserable. In my experience the antibody test was never very helpful. Every now and then I ask my doctor to run it but the results never seemed to correlate with how I felt or my other thyroid lab values.

Good luck on your healing journey.

EM

[Miriam Poorman-Knox]

have any of you had symptoms of thyroid problems but had normal TSH only to find out you really did have a thyroid problem? i have alot of symptoms of hyper, but normal TSH and wondering if its worth pursuing, i used to be cold all the time, now i'm so hot! and i'm even skinnier! thanks for any input

radha

<{POST_SNAPBACK}>

This is one of yhe main factors in pots!!!! Make sure this is checked out thouroughly. My first sigh of pots was 25 years afo, after I had my son,,,I had hashimotos ans sub acute throiditis,and most people need a higher dose to feel better--talk to a endocrinologist who understands pots