If your T3 and T4 are normal and your tsh is still a little high, let's say 15 and you feel great, do you think it would be ok to stay on

[marymerry83]

your low dose? Do you really need to be within a certain lab range? I know they want it below 5, but the way I feel now I think I would be happier being a little more hypo than hyper. Any thoughts?

[helvella Administrator Thyroid UK]

I would be concerned to find out why the TSH was not reflecting the T3 and T4 levels.

One possible reason is pituitary resistance to thyroid hormone - meaning that even when you have adequate thyroid hormone, the pituitary doesn't react to it properly and continues to push out too much TSH. Another possible reason is the presence of a pituitary adenoma which could be pushing out TSH regardless of anything else. In both of these you could have sufficient thyroid hormone but still have a high TSH level. These two possibilities should be discussed with your doctor. (Whether they understand is another issue... )

Another explanation could be if the TSH test were suffering "interference" from something. One classic is if you happen to have TSH antibodies. Then TSH and an antibody combine to form something called macro-TSH. Some technologies of TSH testing read high if there is any macro-TSH n the system. One approach to this is to get the TSH test re-done and analysed at a lab which is known not to suffer this problem. Again, doctor would probably need to discuss with local lab and find out how a sample can be sent elsewhere.

Also, very often, in time people who thought they felt OK at one dose of thyroid hormone realise that they want to at least try increasing the dose. It took a long time to become ill - it will take a long time to recover. And there may be stages at which you want or need to pause for a while.

Rod

[marymerry83 in reply to helvella]

Thanks Rod. My endo did all kinds of blood tests referring to pituitary and adrenal issues. They were all normal. One mri did suspect a pituitary adenoma but the second mri said there wasn't one. For eight years I was subclinical, normal t3 t4 with tsh floating around 20. These past couple months though the t4 did show up low and tsh of 94. As I stated earlier the t4 normalized and tsh came down to 32 in just two weeks on 25mcg of levo. This is way I am so confused. It has been four weeks now and I don't get my blood drawn until the 19th but I feel it has brought it down some. If it were pituitary overflow, would the treatment of some thyroid hormone replacement therapy be the same?

[helvella Administrator Thyroid UK in reply to marymerry83]

Frankly I do not know - the issues you are having are way out of the usual run of the mill.

I am most certainly concerned about what could happen. For example if some factor in your life or body is "blocking" the TSH, then, if that factor were removed you could shoot into hyperthyroidism very suddenly. Because I do not understand what is happening, nor why, I cannot simply reassure you that all will be well and it is fine to ignore the high TSH. I wish I could.

Rod

[marymerry83 in reply to helvella]

I had subclinical hypothyroidism for the past eight years. This just happened recently.

[Pixiefeet86 in reply to helvella]

Hi there. I appear to have normal t4 and t3 but have just come back from the doctors saying I have a TSH level of 7.5 and also high levels of haemoglobin. This apparently can be linked to living at high altitude or smoking. I don't smoke, or live at high altitude. I have a healthy lifestyle. Worried that its all connected. :0( any ideas or comments would be greatly appreciated. This has been going on for such a long time. Intermittent TSH levels.

[elm2003 in reply to Pixiefeet86]

This is me. I just had my levels done and my TSH was in the 7 range but the T4 was normal range. Trying to understand why. I dont smoke. Dont live at high altitude. I know this was posted 2 yrs ago. Did you ever find out what was going on?

[jlovell88 in reply to helvella]

In many years of thyroid failure, I have not had good experience with the medicine to achieve a normal TSH. Taking t4 at 250 micrograms a day, my levels of Rt3 were high and my energy was low. Taking an equivalent dose of t3, my energy is okay, but my blood pressure went up 80 points. Using the replacement dose of 1.66 micrograms of t4 per kilogram of weight seems fine, but my doctors insist that TSH must be in the normal range. It seems like the Doctors who will handle this are very exclusive and expensive.

[Leagirl in reply to helvella]

You are right, some doctors don't know really how to read thyroid tests , to find tumors of the pituitary

[bantam12]

We are all different, levels that suit one don't suit another, if you feel fine at your levels then that is where you need to be.

It seems for a long time we have all followed recommendations that we need TSH at or below the range withT4 and 3 right at the top or even higher but many of us are finding out this isn't correct for everyone. Some of us can't manage with levels at the extreme ends of the ranges, many find they are much better mid range especially with TSH.

Go with how you feel.

[marymerry83 in reply to bantam12]

That is what I think. Who deciedes these ranges anyway! I think there is alot to factor in and not each dose should be the same for everyone. Thank you. I need all the support I can get right now. I have to fight this endo doc as well. They started me on a low dose 25mcgs and I could feel it working, but because I had a super high tsh (94) she insisted I jump right on to a dose of 75. I did talk her into doing a blood test for tsh,ft3 ft4 first. She was astounded that after all two weeks of 25mcg, my tsh dropped to 32 and ft4 which was only a little low, is now normal. It has been four weeks now and I can still feel a difference, but feel I am where I should be. This doc couldn't believe my progress. She insisted that the tsh would not budge much on such a low dose. Am I a freak or something? I am actually concerned about that because she made me feel so abnormal about it.

[marymerry83 in reply to bantam12]

I agree and am going too. One level may be good for someone else and not another. At the end of the day, it is on how you feel.

[nostoneunturned]

Follow Rod's good advice. You can read more about the possibilities of the reasons for your seemingly anomalous results by typing in:

Interpretation of thyroid function tests by Colin Dayan

When results come up, choose the Keck School of Medicine reference. This is the only reference I know of which allows free printing of C Dayan's paper. Consider that Panel 6 and its associated text might apply to your case.

This paper might be of assistance to your doctor, s/he will (should) know C Dayan is expert in field.

[marymerry83 in reply to nostoneunturned]

Thank you...

[marymerry83 in reply to nostoneunturned]

Read it. It was very informative and answered alot of my questions. You can have a normal t3 t4 with a wacked out tsh which is called subclinical hypothyroidism as long as other issues such as pituitary problems are ruled out. Thank you so much, this helped alot.

[Hidden in reply to marymerry83]

Just a thought but are you taking any supplements which contain iodine, I understand this can temporarily raise your TSH.

[marymerry83 in reply to Hidden]

No supplements.

[MaryMary]

Although you have been told that T4 and T3 levels are normal, perhaps we should see these levels and the ranges if you have them please?

Mary

[marymerry83 in reply to MaryMary]

ft3 mine is 2.7 normal range for this lab 1.8-4.6. Ft4 mine is 1.0 normal range for this lab is 0.7-1.8

[MaryMary in reply to marymerry83]

I'm not a medical expert and others will be able to comment on these levels as well but the ranges are lower than most I've seen before, particularly the FT3. As hypohen said above, for most people to feel well the FT4 should be at the top of the range and my own FT3 is right at the top of the range, so it looks like you could take more T4 and maybe your TSH will come down again

Why do you want to stay hypo? To be as well as possible is what I'm striving for and you would notice if you went hyper.

Mary

[marymerry83 in reply to MaryMary]

Thank you. That makes me feel better.. Everyone goes on about becoming hyper and toxic and that has me nervous. It seems I have a way to go yet. Those labs were from two weeks ago and two weeks later I can feel a difference. I will know where I really stand in ten days at my next blood draw. These doc's have me so crazy about going hyper I just figured it is better to be a little hypo then hyper. I don't know since I never done this before. Thank you so much.

[bantam12 in reply to MaryMary]

Have to correct you there Mary, I said that the general recommendation (on forums that is ) is for T4 and 3 to be at the top or over range to feel well BUT we are finding out that this is not true for everyone, many many people feel dreadful with T4 and 3 that high, there are lots of people (me included) who are only well when we are mid range and TSH 1 or more. Also you cannot always tell if you have gone Hyper as the symptoms can be exactly the same as Hypo, so you think you need more meds but in fact you need less, happened to me recently.

[bantam12 in reply to bantam12]

That was a reply to MaryMary not MaryMerry, too many Marys !!!

[marymerry83 in reply to bantam12]

How long were you hyper before you realized it?

[bantam12 in reply to marymerry83]

Long story ! I was originally on too high a dose for 5 years ( I didn't keep track of results in those days) I lowered my dose from 150mcg down to 75mcg which was too low so eventually went back to 125mcg for a couple of years then 3 months ago saw a new endo about VitD deficiency and she wanted me to lower the dose again so now on 100mcg and feeling normal again. I have had Graves disease so know what Hyper symptoms are ! but the symptoms with overmedication are very different, you can feel utterly exhausted, cold, dizzy, balance off blah blah blah. I see so many posts on the forums from people with really Hyper looking results and symptoms but they assume they are Hypo and need a higher dose so ignoring the GP and Endo advice to reduce dose. Initially I was the same and in my case the docs were 100% right. I think we have to get away from this myth that we all need the same results to feel good, we are all individual in the way our bodies work so what is right for one may not be for another. Phew I did say it long story and thats only the shortened version !

[marymerry83 in reply to bantam12]

Thanks I got it. Do you think my low dose of 25 levo can cause hyper since I dropped so much the first two week? I thought we needed to watch for sweating and heart palps if you were hyper..confused.

[marymerry83 in reply to bantam12]

Another question. Sorry. So you are saying you were in hyper from your dose for the whole five years!

[marymerry83 in reply to bantam12]

You are absolutely right about thinking the higher the dose the better. That is not always the case. Like someone told me I have been sick for a long time not treating my subclinical thyroidism and now I have full blown hypothyroidism. I just can't head my head around how well the low dose is working. I have been told by some doc's though that alot of people are sensitive to small doses of levo and respond like me. Just wanting reassurance I suppose.

[MaryMary in reply to bantam12]

Apologies for misquoting you it wasn't intentional - I was trying to say that her levels whilst in the ranges quoted (which looked odd to me) weren't high at that reading. Communication can be very tricky at times especially with brain fog!!!

Mary

[bantam12 in reply to MaryMary]

Crickey no problem MaryMary, I'm one of the "we don't all fit in the same box mob" so just wanted to set it straight. The layout of the posts is now quite confusing, well I think so anyway, you think you have replied to one post but it sometimes ends up at the bottom of the page, sometimes doesn't, so easy to miss replies and for the initial post to be lost in the muddle. Certainly keeps me on my toes trying to keep up !!

[puncturedbicycle in reply to bantam12]

hypohen I thought that being over the t3 range was verboten (heart damage, osteoporosis, etc). When I felt my best I was over the range but suspect I took my meds too close to the test.

I live in fear of being over the top of the t3 range, even though like you I seem to feel best right at the top (and how do you know if you're just over or just under anyway?).

[infomaniac]

When you say you feel great Mary, do you not have any symptoms at all any more?

[marymerry83 in reply to infomaniac]

only mild. They are not completely gone. I still feel a bit tierd, but not so fatigued. The swelling in my face is gone and my appetite is not so intense anymore, which is wierd for being hypo.

[Safar]

This could be a good source of information. There is a section describing high TSH with normal T3\T4.

iccidd.org/cm_data/2001_Day...