Strange Thyroid Function Tests and Disappearing Rash...

[JBB]

Hi everyone,

Over the last few years I have had several thyroid function profiles done with extremely varying and strange results. Do any of you have any similar results or ideas on what these might mean?

Here they are:

Date 10/2011
TSH on NHS 2.6 (no range provided grrrrr, but I think up to 5 considered normal by NHS)

Two weeks later with private laboratory...

Date: 10/2011
TSH 8.1 (0.27-4.2) High
fT4 22.7 (12.0-22.0) High
fT3 6.1 (3.1-6.8) High (very top of range)

Date 11/2011
Urine T3 over 24 hours: 917 (592-1850) Very bottom of box but within range
Urine T4 over 24 hours: 909 (347-1994) Middle of box

Date 07/2012
TSH 3.62 (0.27-4.2) All within range
fT4 16.7 (12.0-22.0)
fT3 4.5 (3.1-6.8)

Date 12/2011
TSH 1.64 (0.27-4.2) Note: taking T3 on morning of this test

Date 08/2013
TSH 7.77 (0.27-4.2) High Note: Stopped T3 two days before test
fT4 0.59 (0.9-1.7) Low

Both specialists I have seen think these indicate thyroid hormone resistance but whenever I go up to 50mcg of T3 I feel very very ill...flu like, generally very weak, nausea, have to lie down etc and never get any improvement from T3. Tried circadian T3 with no success.

What is going on with my thyroid!? Sometimes it's hypo, sometimes it's "normal" and it doesn't respond to T3 or Natural Desiccated Thyroid even the slightest bit.

Could it be a detox reaction when I go up to 50mcg? Anyone had this with hypothyroid?

Also cold hands / feet and many other symptoms which go along with hypothyroidism. I could make a long list .


Unrelated to thyroid I have a strange rash which appears randomly on my wrist (see image attached). It comes and goes but isn't there most of the time. I usually notice it occasionally when having a bath, seems like the heat brings it up or something, this pic was when I noticed it whilst having dinner :S. The spots aren't raised, completely flat. Any ideas what this means?

Many thanks,

J

 

[Ema]

Once you are on thyroid replacement, the TSH isn't all that important and is not very useful at all for tracking treatment.

Your TSH should spike after stopping T3 only abruptly. That is what keeps you alive. You should never stop T3 abruptly but it needs to be weaned down in order to give your body a chance to pick up T4 production again.

The low T4 is suppressed which is normal on T3 only.

It's really hard to draw any conclusions from your last labs because you dropped the T3 two days before the test. The results look as expected given that scenario.

Can you take any amount of T3 without symptoms? What is your FT3 and FT4 on that amount?

Have you checked your adrenals? Iron? Those are typical reasons that someone can't tolerate a therapeutic dose of thyroid hormone. Infections are another reason.

Ema

 

[JBB]

Hi Ema,

Thank you for your help. Yes I agree unfortunately it seems like uninformed docs doing the tests so some like you say are not so useful. Yes adrenals, full iron panel are fine ok.

What infections should one check for?

Most T3 I can take without symptoms is 37mcg. 50 makes me very ill.

I'm not sure of my fT3 / fT4 whilst on T3, only the TSH test above. Looks like T3 as expected suppresses my T4 and brings down my TSH...don't know what fT3 looks like whilst on T3.

First lab is still strange and surely suggests resistance (not on any hormone for that one).

But why do I not respond to any T3 if this is the case?

Thanks for your reply, much appreciated.

J

 

[vamah]

A lot of doctors don't consider tsh high if it is under 5 or so, but others say that anything over 2 is idicative of thyroid problems amd it looks like the only time you were under 2 was when you were on thyroid meds.

 

[August59]

Hi everyone,

Over the last few years I have had several thyroid function profiles done with extremely varying and strange results. Do any of you have any similar results or ideas on what these might mean?

Here they are:
Date 10/2011
TSH on NHS 2.6 (no range provided grrrrr, but I think up to 5 considered normal by NHS)

Two weeks later with private laboratory...
Date: 10/2011
TSH 8.1 (0.27-4.2) High
fT4 22.7 (12.0-22.0) High
fT3 6.1 (3.1-6.8) High (very top of range)

Date 11/2011
Urine T3 over 24 hours: 917 (592-1850) Very bottom of box but within range
Urine T4 over 24 hours: 909 (347-1994) Middle of box
Date 07/2012
TSH 3.62 (0.27-4.2) All within range
fT4 16.7 (12.0-22.0)
fT3 4.5 (3.1-6.8)

Date 12/2011
TSH 1.64 (0.27-4.2) Note: taking T3 on morning of this test

Date 08/2013
TSH 7.77 (0.27-4.2) High Note: Stopped T3 two days before test
fT4 0.59 (0.9-1.7) Low

Both specialists I have seen think these indicate thyroid hormone resistance but whenever I go up to 50mcg of T3 I feel very very ill...flu like, generally very weak, nausea, have to lie down etc and never get any improvement from T3. Tried circadian T3 with no success.

What is going on with my thyroid!? Sometimes it's hypo, sometimes it's "normal" and it doesn't respond to T3 or Natural Desiccated Thyroid even the slightest bit.

Could it be a detox reaction when I go up to 50mcg? Anyone had this with hypothyroid?

Also cold hands / feet and many other symptoms which go along with hypothyroidism. I could make a long list .


Unrelated to thyroid I have a strange rash which appears randomly on my wrist (see image attached). It comes and goes but isn't there most of the time. I usually notice it occasionally when having a bath, seems like the heat brings it up or something, this pic was when I noticed it whilst having dinner :S. The spots aren't raised, completely flat. Any ideas what this means?

Many thanks,

J

I would be asking them why you have thyroid resistance, which they probably can't answer. It makes me think your cortisol is low and you don't have enough to usher all of your T3 into the cells. If they would check these two test, I would ask them to check your cortisol and Reverse T3

 

[Ema]

My guess is that you have Hashi's and not thyroid resistance. Have you tested thyroid antibodies?

Have you measured RT3? Had an MRI to look for a TSH secreting adenoma (I think this is unlikely)?

Do you have other signs of pituitary issues? Is your prolactin high?

What were your cortisol test results? "Normal" is quite often not sufficient considering the bottom of the range occasionally goes down to 0.

Ema

 

[barbc56]

A TSH of 3.6 would be in the higher range of normal, according to my doctor who says anything over 4 you need medication and if close to that your TSH needs to be monitored. My dosage of synthroid has been upped two times in the last few years, so I get a bloodtest every 4 to 6 months, depending on the last reading.

I believe 4 is the updated cut off but may need to look that up.

You mention getting a cbc panel, but did this include your ferrtin level? Sometimes it does but not always.

 

[Ema]

The AACE has said since 2002 that the top of the range for TSH should be 2.5. However, we are still waiting for lab reference ranges to catch up, not to mention most endos.

 

[JBB]

I would be asking them why you have thyroid resistance, which they probably can't answer. It makes me think your cortisol is low and you don't have enough to usher all of your T3 into the cells. If they would check these two test, I would ask them to check your cortisol and Reverse T3

Yes unfortunately I don't think they can answer why I have resistance...in Paul Robinson's book he says there are so many reasons he thinks most people will never find out exactly what it is. But extra T3 should overcome it regardless.

I've done reverse T3...very low so doesn't look like that.

Cortisol from saliva adrenal gland test is not perfect but ok, within normal. Have tried taking extra cortisol along side the T3 with no success.

Appreciate the ideas ...keep em coming!

Best wishes,

J

 

[JBB]

My guess is that you have Hashi's and not thyroid resistance. Have you tested thyroid antibodies?

Have you measured RT3? Had an MRI to look for a TSH secreting adenoma (I think this is unlikely)?

Do you have other signs of pituitary issues? Is your prolactin high?

What were your cortisol test results? "Normal" is quite often not sufficient considering the bottom of the range occasionally goes down to 0.

Ema

RT3...Tested and is fine.

Haven't had MRI but seeing as my TSH varies wouldn't a tumor produce consistently high TSH?

Cortisol tests were done via saliva adrenal stress test by Genova so I trust they are accurate. My Doc says they are a little low so I have been taking cortisol but it doesn't do anything! They are still in Genova's green range so nothing massively out.

I haven't had a prolactin test. What would other "signs of pituitary issues" be?

What would that imply?

I haven't had antibodies tested. But I don't see the implications for treatment. Wouldn't the first result be unlikely with Hashi's, or can it swing all over the place? Also shouldn't Hashi's respond to T3 / Natural Desiccated Thyroid anyway?

Thanks for your replies .

Best wishes,

J

 

[JBB]

A TSH of 3.6 would be in the higher range of normal, according to my doctor who says anything over 4 you need medication and if close to that your TSH needs to be monitored. My dosage of synthroid has been upped two times in the last few years, so I get a bloodtest every 4 to 6 months, depending on the last reading.

I believe 4 is the updated cut off but may need to look that up.

You mention getting a cbc panel, but did this include your ferrtin level? Sometimes it does but not always.

Yes my cbc panel included ferretin at a nice healthy level.

Yes I know my TSH is definately high contrary to all NHS guidelines, so it seems strange that I don't respond to any hormones.

Thanks for the input .

J

 

[Ema]

RT3...Tested and is fine.

Haven't had MRI but seeing as my TSH varies wouldn't a tumor produce consistently high TSH?

Cortisol tests were done via saliva adrenal stress test by Genova so I trust they are accurate. My Doc says they are a little low so I have been taking cortisol but it doesn't do anything! They are still in Genova's green range so nothing massively out.

I haven't had a prolactin test. What would other "signs of pituitary issues" be?

What would that imply?

I haven't had antibodies tested. But I don't see the implications for treatment. Wouldn't the first result be unlikely with Hashi's, or can it swing all over the place? Also shouldn't Hashi's respond to T3 / Natural Desiccated Thyroid anyway?

Thanks for your replies .

Best wishes,

J

Probably a tumor would produce consistently high TSH, which is why I wrote I thought it was unlikely, but it isn't absolutely unheard of to have one that doesn't.

It worries me that your saliva cortisol was a little low. Do you still have a circadian rhythm?

It's also possible that by taking small amounts of cortisol, you are suppressing more than you are replacing and that is also contributing to your difficulties in tolerating thyroid hormone.

If your cortisol levels are truly just a little low but still have good rhythm, you might have better luck supplementing DHEA and/or pregnenolone to support the HPA axis (provided you also test low on those hormones).

If you had abnormal levels of other pituitary hormones, that would be another indication that something is awry in your pituitary and a clue to investigate further in that direction.

Hashi's can 100% swing all over the place. It's a primary feature depending on the number of antibodies involved in the attack. Attacks can go into remission and then active again and it can make it miserable to try to make sense of labs.

I personally think it is important to rule out Hashi's (TgAb and TPO Ab) because that is so much more common than thyroid resistance. Your reaction to thyroid meds also suggests Hashi's over thyroid resistance so far as I can tell without seeing consistent FT4/FT3 labs on a stable dose over a period of months.

People with thyroid resistance typically need upwards of 100 mcg of T3. This is a very high dose of T3 and requires intense monitoring with monthly FT3 labs and hopefully close physician guidance. It makes me nuts to see people on the Internet recommending such high doses without these important pieces of the puzzle. I'm not a fan of Recovering with T3; I think Paul is going to kill someone someday with it because it does not work for the vast majority. Adrenal crisis is a medical emergency that can be fatal.

Anyway, you asked how Hashi's changes treatment, and the fact is that those with Hashi's can sometimes get by with as little as 37.5 mcg of T3 and still have good frees. The same is not true with thyroid resistance. Not everyone with hypothyroidism needs a massive dose of T3. I don't know what your FT3 looked like on 37.5 mcg of T3 to know if that is true for you or not.

If I were in your position, I would start over and go get thyroid labs once you are off thyroid meds for a period of about 2-4 weeks. I would then get a baseline panel (TSH, FT3, FT4, RT3, and TGAb and TPO Ab).

Then I would start taking T4 (or consider taking SR T3 instead as contrary to what Paul says no one needs a "hit" of T3 and SR is much weaker and gentler than Cytomel or the equivalent). In about 4-6 weeks, I would get another set of labs with FT3 and FT4 to see where the levels are at. If your FT4 is below 1.3 approx in US terms, I would continue to raise T4 until your FT4 is at that level. At that point, I would begin to titrate my T3 up so my FT3 is in the top third of the range. So I would add T3 in slowly until I have a good FT4 (1.3) and an optimal FT3. That's the best way I know to get optimal thyroid levels because you see what you are able to convert from FT4 and then add to that with exogenous T3 to get both right. Typically people end up on 80-100 mcg T4 and 5-15 mcg of T3.

You could also take NTH but I don't like being constrained by someone else's proportions of T4 and T3. By using bioidentical synthetics separately, I can find the proportion that is right for my unique needs. There's nothing magic about NTH. We can make T2 and T1 just fine from T4 and T3. If it works, great, but it's not inherently better because it is "natural" in my opinion.

Ema

 

[barbc56]

I may have misunderstood what you wrote but it sounds like you are saying your thyroid was normal when tested with the NHI but not with the private lab and the only difference was between the two labs for all the tests you had?

T3 is very potent and can cause a lot of problems.Could it be that you don't need the thyroid medication and the T3 is causing the problems?

Obviously, I am not a medical professional so don't know if this is pertainent to your case or not but just brainstorming here and you said to keep the ideas coming!

I worry when patients play around with the dosage of their thyroid medication thinking they are not getting enough of a boost when it MAY, enphasis on may mean the thyroid problem is resolved but the cfs/me is still a factor as the symptons are very similar.. I have known people who do this which is really worrisome but I am biased as I was hyperthyroid many years ago and not only was it quite distressing but I could have had a heart attack. There is something called a thyroid storm that can be fatal.

Anyway, food for thought.

 

[JBB]

@Ema Thanks for your very detailed post Ema. I really appreciate the time for your feedback. Sorry for butchering it!

"Probably a tumor would produce consistently high TSH, which is why I wrote I thought it was unlikely, but it isn't absolutely unheard of to have one that doesn't."

Ok, I didn't realize that was possible...guess the only way is MRI to confirm a tumor?


"Do you still have a circadian rhythm?"

Yes, looks like it. Cortisol cycles high in the morning and goes down later over a day. Taking 50 DHEA as that was low normal. Initially I tried TH without cortisol so I don't think this is a problem. Not tested for pregnenolone. Not tested for growth hormone. I guess these two would give me an idea if my pituitary was functioning normally? Is the treatment for a malfunctioning pituitary hormone replacement e.g GH, pregnenolone etc?

"People with thyroid resistance typically need upwards of 100 mcg of T3."

Yes this is a problem with the THR theory for me...I increase the dosage slow and get ill at 50 which is what you'd expect if I wasn't THR and does indeed support the Hashi's theory like you suggest!


"Hashi's can 100% swing all over the place."

I didn't know this, that does put a new perspective on all these results making Hashi's seem a likely possibility.


"Hashi's can sometimes get by with as little as 37.5 mcg of T3 and still have good frees."

Yes, I'm aware of this but find it confusing. If it's Hashi's why do I not feel anything at all from T3 when I'm on this kind of dose (37.5) which seems to be the maximum I can take? Are you suggesting that maybe Hashi's is just part of my ME / CFS thus I could have the dose right but not see improvements as other areas need attention? I'm always surprised that thyroid hormone does nothing for me. I just can't understand that.

Starting over and getting antibodies sounds like a good idea. Then I could maybe adjust as you suggest with my own T4/T3 combination if it did turn out to be Hashi's. Otherwise I guess it's time to investigate other hormones / have an MRI.


@barbc56 Thanks for your ideas. Very much appreciated.

"...the only difference was between the two labs for all the tests you had?"

No, it doesn't seem to make much difference...the last test was done by a German lab, and some times the same lab gives different results.

"There is something called a thyroid storm that can be fatal."

Yes, I do know about this and try to be careful and always work with a doc. Thanks for pointing it out though . I do have a tendency to play around with them.

"Could it be that you don't need the thyroid medication and the T3 is causing the problems?"

Yes maybe it is screwing up my test results. Going back to square one and re-testing with no hormone sounds like a good idea.

 

[barbc56]

Sometimes it takes. several times of going back to square one which is frustrating to say the least. Good luck and keep us posted.

 

[Ema]

@
"[I]Probably a tumor would produce consistently high TSH, which is why I wrote I thought it was unlikely, but it isn't absolutely unheard of to have one that doesn't.[/I]"

Ok, I didn't realize that was possible...[B]guess the only way is MRI to confirm a tumor?[/B]

Yes, but even then pituitary imaging is difficult. The newer 3T machines are better but a pituitary tumors are notoriously hard to visualize. I still think this is unlikely at this point though good to keep on your radar.


[quote="JBB, post: 402868, member: 10207"]@[USER=4199]
[I]"Do you still have a circadian rhythm?"[/I]

Yes, looks like it. Cortisol cycles high in the morning and goes down later over a day. Taking 50 DHEA as that was low normal. Initially I tried TH without cortisol so I don't think this is a problem. Not tested for pregnenolone. Not tested for growth hormone. [B]I guess these two would give me an idea if my pituitary was functioning normally? Is the treatment for a malfunctioning pituitary hormone replacement e.g GH, pregnenolone etc?[/B]
[/quote]

The most commonly tested pituitary hormones are TSH, ACTH, and prolactin.

If you are hypopit, then the missing hormones are replaced. If one is overproducing, then there are interventions in that direction to lower the hormone.

[quote="JBB, post: 402868, member: 10207"]@[USER=4199]
[I]"Hashi's can sometimes get by with as little as 37.5 mcg of T3 and still have good frees."[/I]

Yes, I'm aware of this but find it confusing. [B]If it's Hashi's why do I not feel anything at all from T3 when I'm on this kind of dose (37.5) which seems to be the maximum I can take? Are you suggesting that maybe Hashi's is just part of my ME / CFS thus I could have the dose right but not see improvements as other areas need attention? [/B]I'm always surprised that thyroid hormone does [I]nothing [/I]for me. I just can't understand that.[/quote]

Yes, that goes back to the infections that I mentioned in the first post but then forgot to answer. Typical viral ones are EBV, CMV, and HHV6. Lyme seems to be a fairly common bacterial infection. Mycoplasma is also possible.

I had this same problem with thyroid hormone not making a big difference in how I felt and having a hard time raising my dose when I had completely untreated infections. And once I started treating my infections, I found that my own thyroid frees were really quite good. The body turns down the metabolism during times of chronic infection and I have found my own body to be very resistant to artificially increasing the metabolism through the use of exogenous meds. It works somewhat but it is better to try to get to the root cause if at all possible.

[quote="JBB, post: 402868, member: 10207"]@[USER=4199]
Starting over and getting antibodies sounds like a good idea. Then I could maybe adjust as you suggest with my own T4/T3 combination if it did turn out to be Hashi's. Otherwise I guess it's time to investigate other hormones / have an MRI.[/quote]

I really would start over with new labs and a combination of T4 and T3. If you are methodical about raising your dose and getting labs, you will have a lot more information about what is really going on, whether it is Hashi's or something else.[/USER][/USER][/USER]

 

[JBB]

@Ema Thanks, ok I see that makes sense now. I'll start again from the beginning I think and do antibody's. Also looks like I'll have to be checked out for infections *sigh*...and so it goes on .

Thanks everyone for your help and comments .

Best wishes,

J