High tsh

[phirestar]

I’m in the USA. Has anyone had a Tsh between 50-60 without symptoms of being hypothyroid and feeling fine? If so, what were your t4,t3 and rt3 levels?

Thx

[Hidden]

You need to put what it was measured in & the reference range as our UK testing reference ranges are different to yours in the US

[phirestar in reply to Hidden]

Range: .4-4.5. Didn’t think the range was necessary bc it was so high.

[greygoose in reply to phirestar]

You're right, you don't need a range for a TSH. A TSH is always a TSH and the ranges are usually to high, anyway. But, you do need ranges for all the rest.

[diogenes Remembering]

With that level, be suspicious of the TSH test and get another by another method.

[phirestar in reply to diogenes]

It was retested.

[diogenes Remembering in reply to phirestar]

By another independent method?

[phirestar in reply to diogenes]

I have Medicare and a contracted lab. The 2 labs that are available to me in my area all use the same method. I suspect that the tsh is correct based on other thyroid lab values which were far less than optimal. My labs prior were optimal. I’m working on a theory having to do w rt3. I’ve been asymptomatic since I was dx’d at 65 and it took me quite some time to wrap my head around being asymptomatic with a clinical profile that absolutely is in conflict w lab results. My doc was as surprised as I was.

[diogenes Remembering in reply to phirestar]

If the two labs use the same method then all bets are off. You need a completely separate retest.

[SilverAvocado in reply to diogenes]

Are any other methods available to patients, or would it need to be in a research environment with more facilities?

[diogenes Remembering in reply to SilverAvocado]

There are about a dozen companies with a TSH test. They don't all do it by the same technique so interference in one might not show up in another.

[Nuneatongirl]

I was diagnosed with a TSH of 68 in Jan 2018. I had no symptoms of hypothyroidism apart from feeling tired in the afternoons at work. The blood tests were done as part of a routine check. My GP was surprised. She said I should've been feeling awful. All very odd. I take 100mcg of levothyroxine now and feel the same. Less tired in the afternoons though!

[phirestar in reply to Nuneatongirl]

If they tested your frees and rt3 would you mind sharing. For myself, I’m working on a theory.

[SilverAvocado in reply to phirestar]

Phirestar, if you click on Nuneatongirl's name, you will see her post history. There is a post there giving fuller blood tests, but unfortunately it looks like she was only given TSH and freeT4 tests.

If you post more of your own results you can get good advice here about whether it's consistent with your theory.

[SilverAvocado]

I've seen a few other people come through the forum with very high TSH, but feeling fine. A few people with extremely high TSH that doesn't reduce when taking hormone, as well.

Unfortunately in my memory we've never been given the full thyroid panel.

I think you will struggle to find many other examples, as this kind of presentation is definitely rare. And unfortunately it's outside doctors usual understanding of hypothyroid (which is quite limited), so you may struggle to get any further testing you need.

TSH is produced in the pituitary as a reaction to thyroid hormone. So it doesn't actually have anything to do with the operation of your thyroid itself. The pituitary can also go wrong, and that's likely what is going on with you.

Could you please share your own thyroid panel? If you do you'll be helping the next person to come along in the future asking the same question you are!

[phirestar in reply to SilverAvocado]

Tsh went from 2.6 to 59 ( over 4)

Ft3 went from 3.7 to 2.8 (2.3 - 4.2)

Ft4 went from 1.3 to .7 ((.8 - 1.8)

Antibodies have been over range since tested - tpo 11/15 and tgab 1/16.

Dx’d w tsh of 12.4 and and did a tsh w and without HAMA (interference lab). Results weren’t significant enough to warrant lab method interference. I had horrible reactions to mylan levo and synthroid for over a year. All were firsts at 65/66. For the last 2+ years on hypoallergenic med (Tirosint and then compounded t4 in an olive oil suspension), no reactions. The last thyroid lab was done following a period of high stress/anxiety as I was declined by 3 specialists for referral of of anti phospholipid syndrome. What symptoms that I had that might be associated w APS occurred as reactions to the thyroid meds. Since I’ve not had reactions/symptoms since the hypoallergenic med, I still consider these ‘symptoms ‘ reactions to the thyroid meds. During this time I sprouted a purplish rash on the sides of my face, biopsied discoid lupus. I had a consult w a hmotoligist who has referred me to UCSF in San Francisco. I have no prior history or symptoms for either of these two AID. They are also unusual at my age (68/69). I’m still in what I call referral quagmire. In June last year I told my doc about how stressed I was bc I’ve never had a doc decline to see me. Since 2015 I’ve been fairly stable w minor increases in meds until now. I did my genetics in 2017 bc I felt this would provide good research material and better info since I didn’t have hypo symptoms to chase. SLE has been ruled out by labs and of the snps studied so far, I’m -/- on three and +/- on one for discloid lupus. I carry a trait snp that might be associated with anti phospholipid syndrome. My clinical profile absolutely is in conflict w my labs. I’ve stumped 4 docs now, dermatologist,internist, Hemetoligist, Rhuematoligist. My VD was on the low side and I’m +/- on the two VDR snps. My V B12 started at 899 11/15 and has decreased to the high 400’s in 11/18 so I began supplementing. In September (following a negative ANA in March) I had a positive ANA 1:160, speckled and a completely negative cascade and a negative DS DNA. A compliment c3 and c4 was done. 3 is mid range and 4 sits on the low range line. This summarizes my lab profile. I’m only mentioning these bc these are an unusual combination along w my asymptomatic hypo status. If it ends up helping someone else then that’s a good thing.

[SilverAvocado in reply to phirestar]

I can only comment on the thyroid panel. Some other like Diogenes might be able to comment on others, as his first thought was the test was distorted, which would presumably be from other slightly strange biochemistry. I know that biotin, for example, which is one of the B vitamins will distort thyroid results, but there must be dozens of similar examples out there.

If I'm right and this was your initial result:

Tsh 2.6 ( over 4)

Ft3 3.7 (2.3 - 4.2)

Ft4 1.3 ((.8 - 1.8)

These frees are pretty much ideal. Those ranges should be normal curves, so the most likely result (healthy, unmedicated) is dead in the centre.

TSH on the other hand skews towards the bottom end. 2.5 is about the point where it starts to look unlikely for a healthy panel, and suggests something was just starting to go wrong. Will try to continue this but may have to rush off.

[SilverAvocado in reply to SilverAvocado]

Oops, had to go out, here we go:

Tsh 59 ( over 4)

Ft3 2.8 (2.3 - 4.2)

Ft4 .7 ((.8 - 1.8)

Now at this point your frees are starting to look a bit low. They don't have to be under range to be an issue, the lower part of the range can make people very sick. FreeT4 is right at the bottom of the range with freeT3 a touch higher, but still about a quarter of the way up the range. This is a common pattern that indicates the start of a failing thyroid - the body ramps up conversion of freeT4 to freeT3 to preserve freeT3 levels.

Now the question is whether a TSH of 59 is disproportional. This is quite a difficult question, it might be there is no real research to tell you if it's too high. With both frees at the bottom of the range you'd expect a high TSH. There's a lot of individual difference. Some people are unlucky and have a sluggish TSH that refuses to go over range. Obviously yours is at the responsive end of the spectrum.

It sounds like you've got some other health problems as well, so these could maybe explain why your pituitary is very sensitive. Or it may be that other health problems are partly caused by being hypo. You mentioned you're searching for answers with some symptoms, so can you be totally sure you don't have hypo symptoms? They can really be all kinds of things!

There's a lot you've written above that I can't understand. Are you saying you're on no thyroid hormone replacement right now and feeling fine?

There is quite a bit of individual difference in whether we feel unwell. Some people are very sick with numbers only a little out of range, and people do occasionally come through who have had very bad looking thyroid panels done by accident, but don't feel they want treatment.

As you've got Hashimotos, your thyroid will deteriorate over time, so you may develop symptoms at any time. But I tend to think dosing should be based almost entirely on symptoms, which means if you feel 100% well right now, don't mess with it. On the other hand if you do have other conditions or unidentified symptoms, you might as well try to get your thyroid panel looking good and see if you feel any better.

The perhaps good news is that the high TSH isn't completely erratic - the rest of your thyroid panel at least roughly matches it.

I will dig up what my own panel looked like with a TSH this high for comparison.

[SilverAvocado in reply to SilverAvocado]

Okay, here's the closest I've got:

TSH: 50 (0.3 - 6)

FreeT4: 9.2 (10 - 22)

FreeT3: 3.4 (3.6 - 6.4)

This is different units to yours, but you can judge things based on where they fall in the range. This is also a medicated thyroid panel, so not quite equivalent. I was taking 1.5 grains of NDT, so a mixture of T4 and T3.

To me this looks pretty similar to yours, although the frees are both a touch lower, and the TSH is lower, too. This means my body is in a worse state but responding a bit less. However I also have this result:

TSH: >100mIU/L(.27-4.2)

FreeT4: 5.6 pmol/L(12 - 22)

FreeT3: 2.4 pmol/L (3.1-6.8)

Which is quite a lot worse, but you can see that in this case my TSH has shot way up, with just 1 unit of difference in FreeT3.

Looking at these, I don't get the impression your TSH is crazily responsive. Possibly a bit more responsive than mine, but not hugely different, and I've never had reason to believe mine is especially high.

I've had a thyroidectomy which is why I'm getting extreme numbers, but we do see people coming through getting big there numbers from Hashimotos, too.

The only puzzle left, then, is why you have blood tests that look substantially hypothyroid, but don't have the symptoms to match?

[phirestar in reply to SilverAvocado]

I’ve been on thyroid meds (t4) since 2015. It took me 3 years to wrap my head around being asymptomatic. The good results were on 88mcg but starting in March last year I had extreme stress and anxiety as I’d had 3 specialists refuse to see me bc I feel fine unrelated to being hypo. Part of my theory revolves around ft3 and rt3. This isn’t the lowest my ft3 has been. If rt3 blocks excess t4 thereby influencing conversion to ft3 then my good labs w a rt3 of 18 with my free levels might suggest the receptors being blocked. The ratio is good through. So if the ratio is good then the high rt3 shouldn’t be problematic. The bad results indicate being hungry for ft3 bc the rt3 drops to 8 thereby increasing receptors for ft3. The ft4 is low so tsh increases. I think that I may run rather wide ranges and there is some research by ethnicity and age. If ft3 is the active hormone then maybe I’m producing enough (not all t3 is produced by the liver though the majority is) to keep symptoms at bay. I still have my thyroid and don’t seem to have gut problems so absorption isn’t/shouldn’t be an issue. My doc is completely puzzled and the bad labs were a complete surprise for both of us. She recognizes that I’m an outlier and pretty far outside the bell curve. The fact that I’m adding 2 unusual AID diseases without prior history also puts me pretty far outside the bell curve. I’ve read that stress/anxiety may influence tsh so there’s that as well. It will be interesting to see my next labs bc I’ve got a better handle on the stressful situation being in referral quagmire. Thx for the info.

[SilverAvocado in reply to phirestar]

I am also an unusual person, and I suppose the opposite to you. I take an enormous dose of thyroid hormone, and have both freeT3 and freeT4 wildly out of range in the past.

But I still have a loads of symptoms and am pretty disabled. I'm better than I used to be (with normal blood tests), but I'm still in bed half the time and can only do very gentle activity.

With my experience, I'm willing to accept that there is huge natural variation. The ranges for freeT4 and freeT3 are normal curves, which means most people will be in the centre, but a tiny number of very unusual people will be at both extremes. Someone has to be that unusual person, and looks like it's you!

It may be that your main problem is doctors are obsessed with TSH, so you've probably had doctors making a huge big deal out of it. But I think if you feel no symptoms, there's no reason for a doctor to be involved.

[phirestar]

My first Medicare plan, doc was obsessed w tsh but I was more concerned w my horrible reactions to the meds since they were all firsts at 65/66. They also didn’t test other than tsh and ft4. I paid oop for full panels and they weren’t interested in those results. That began my research. My new doc under the new Medicare plan realizes that I’m that unusual person and even drew a bell curve showing me how far outside the curve I sit. I get full panels w this doc and plan. I tend to discount tsh but use it as an indicator and monitor the other 3. My tsh has consistently been the more irradic number and went to 20 once when I was off meds for 3 weeks (reactions w doc knowledge). My frees seem to move within a much closer range compared to tsh. My doc wanted me to go to 125 from 88 and I know from past experience that I need to increase slowly or I can’t get to far from a bathroom for a couple of days. I’ve had some difficulty getting to 125 as each time I feel off so we decided that I’d do 115 and alternate to 120 and 125. I seem to be ok w 120 and 115 but 125 makes me feel off. It will be interesting to see the next set of labs and what the tsh is in relation to the other values. I was so sick on the first two meds that I didn’t understand how I could feel fine before starting the meds and get so sick after starting the meds. After a year+, I was put on a hypoallergenic med and for the last 2+ years no reactions and not getting sick. I hope you feel better - we’ll be ‘unusual ‘ on either side of the bell curve!