Still over range t3 and high tsh: Still getting... - Thyroid UK

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Still over range t3 and high tsh

Dee8686 profile image
57 Replies

Still getting results like these.

Blood taken 9am, fasting. No t3 for 12 hours.

Currently on 50mcg levo and 20mcg t3

Folate 6.8 <3.5

Vitamin d 243 (50-175)

B12 300 (37-188)

Ferritin is 83 on this test but recent gp iron panels showed low ferritin (47) iron saturation at 20% (20-60) and so I believe iron is an issue for me. I know b12 and vit d is high as I am supplementing as I have a compromised immune system. Cortisol all ok except waking needs to be slightly higher I believe (previous post)

Anyone else scratch their brains at all for what I should do please?? I’m not well. Have been discharged by addembrookes as their tests showed tsh 2.5 and high t3 and they were fine with that....

Boshus i know you are overrange on t3- is this like you?

As I said I have a compromised immune system and have 2 co infections that my functional medicine doc has said might be blocking my thyroid receptors.

I’m working on raising iron. I know rt3 tells you there’s a problem but doesn’t pin point.

Had an mri and no issues there...

Main issue is debilitating fatigue, digestive issues, cold hands and feet, tremors (seen a neurologist- I believe this is the infections) aches. Blood pressure is always low normal and pulse around 68.

Gluten/ sugar/ dairy free/ grain free Organic diet etc etc!

Should i keep raising t3????

Thank you....

One plus is my antibodies have gone right down and only just over top of ranges to conform hashi.

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Dee8686
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greygoose profile image
greygoose

One plus is my antibodies have gone right down and only just over top of ranges to conform hashi.

That's not a plus, that's meaningless. Really no point in retesting once you know you have Hashi's, because Hashi's doesn't go away. And, it could account for your over-range results - pretty certain actually.

You say 'still' over-range T3. How long has this been going on? And how high have they been?

Dee8686 profile image
Dee8686 in reply togreygoose

Gg this has been ongoing for the last 4 years. This is the lowest my tsh has been according to Medichecks.

According to Genova and nhs tests I’m negative for antibodies!! Go figure.

My t3 has never been in range since I’ve been sick, according to private tests anyway.

I have had conflicting tests for several years now. See previous posts...

greygoose profile image
greygoose in reply toDee8686

OK So, have you tried stopping your levo and T3, to see what happens? I imagine the TSH would go higher, but that's not a problem. Your Frees should drop, though, and that might make you feel better. You shouldn't be dosing by the TSH, anyway.

Dee8686 profile image
Dee8686 in reply togreygoose

When I stopped taking the meds, my tsh went to 11.2 and my t3 remained right at the top of the range but within. I’m not sure what to do ☹️

Dee8686 profile image
Dee8686 in reply toDee8686

I’ll add- I didn’t feel any better!

greygoose profile image
greygoose in reply toDee8686

Do you take any form of Biotin? In a B complex, for example?

How do you feel when you stop your hormone?

As I said I have a compromised immune system and have 2 co infections that my functional medicine doc has said might be blocking my thyroid receptors.

I know of no infections that block T3 receptors. rT3 does not block T3 receptors, either, it has its own receptors. Your rT3 is bound to be high with such a high FT4, but that is not a problem in itself.

Do you eat much soy? Because that could stop T3 getting into the cells - and remember, they put soy into everything, these days, in one form or another. Or, you could have thyroid hormone resistance, meaning that you need very high doses of T3 to get enough into the cells. So, you would have high levels in the blood, but still be hypo.

However, that shouldn't affect T4. Why are you taking T3? Are you a poor converter?

Dee8686 profile image
Dee8686 in reply togreygoose

I have chronic systemic mycoplasma pneumonia along with another Lyme co infection and my immune system is chronically suppressed. I don’t take soy, no. My diet is so clean as I’m so sick and trying all I can to get well.

Dr p recommended I take t3 as he said I might be resistant to hormone.

greygoose profile image
greygoose in reply toDee8686

OK, which is what I said. But, how did you feel when you stopped it for a while? Did you feel any better with a lower level?

Dee8686 profile image
Dee8686 in reply togreygoose

Might things look different if I change dose from

50 levo 30 t3

To 75 levo and 10 t3? What might you expect to see? So try if it’s a stupid question

greygoose profile image
greygoose in reply toDee8686

It's not a stupid question, but I don't think you should increase your levo. Just try reducing the T3. That should give you an FT4 much the same, but a lower FT3.

Dee8686 profile image
Dee8686 in reply togreygoose

I’m looking at everything not just tsh but tsh is signalling for

More hormone right?

greygoose profile image
greygoose in reply toDee8686

Yes. But is your thyroid capable of producing any?

Dee8686 profile image
Dee8686 in reply togreygoose

When I came off hormones for 3 weeks, my t3 went down to the very top of the range

greygoose profile image
greygoose in reply toDee8686

OK, but you would still have had some T4 in your system.

Dee8686 profile image
Dee8686 in reply togreygoose

Yes- what would you do??

greygoose profile image
greygoose in reply toDee8686

Left it a little longer. Allowed my FT3 to come right down to around mid-range to see how I felt.

Dee8686 profile image
Dee8686 in reply togreygoose

But why could my tsh be so high?

greygoose profile image
greygoose in reply toDee8686

I don't know. Maybe there is a problem with your pituitary, even though it doesn't show up on the MRI. But, it's not the TSH itself that is the problem. It doesn't cause symptoms.

Dee8686 profile image
Dee8686 in reply togreygoose

What do you think of shaws comment about dr Lowe? Perhaps it is resistance?

greygoose profile image
greygoose in reply toDee8686

Well, I've said that twice. But, that wouldn't account for your high TSH.

Dee8686 profile image
Dee8686 in reply togreygoose

Why wouldn’t it? Tsh is high with resistance

greygoose profile image
greygoose in reply toDee8686

No, it isn't. TSH responds to the amount of thyroid hormone - both T4 and T3 - in the blood. If you have thyroid hormone resistance, at a cellular level, there will be plenty of hormone in the blood, because it isn't getting into the cells. That would mean that the pituitary would register that there's plenty of hormone in the blood, and reduce its output of TSH - why would it want to stimulate the thyroid to make more hormone when there's already plenty in the blood?

Dee8686 profile image
Dee8686 in reply togreygoose

dr Peatfield was the one who said about resistance to thyroid hormone originally. Thanks

For your explanation

greygoose profile image
greygoose in reply toDee8686

You're welcome. :)

Dee8686 profile image
Dee8686

shaws i would really appreciate your input on this please xx

shaws profile image
shawsAdministrator in reply toDee8686

I am no expert - only going by my own experience :) I am not medically qualified.

Dr Lowe only took one blood test for the patients' initital consultation. Thereafter he took none at all and concentrated upon the symptoms and relief of them.

He would never prescribe levothyroxine - only NDT or T3 and for thyroid hormone resistant people he prescribed larger doses than would be required by someone else.

Re Reverse T3 - there's no problems as that is what levothyroxine does, ie. convert to RT3 and then into T3.

From Dr L:-

"This is from Dr. Lowe:

"Dr. Lowe: Some readers will not be familiar with reverse-T3, and I know from experience that many others harbor misconceptions about the molecule. Because of this, I have summarized in the box below what we know about reverse-T3. I've answered your question below the summary.

Conversion of T4 to T3 and Reverse-T3: A Summary

The thyroid gland secretes mostly T4 and very little T3. Most of the T3 that drives cell metabolism is produced by action of the enzyme named 5'-deiodinase, which converts T4 to T3. (We pronounce the "5'-" as "five-prime.")

Without this conversion of T4 to T3, cells have too little T3 to maintain normal metabolism; metabolism then slows down. T3, therefore, is the metabolically active thyroid hormone. For the most part, T4 is metabolically inactive. T4 "drives" metabolism only after the deiodinase enzyme converts it to T3.

Another enzyme called 5-deiodinase continually converts some T4 to reverse-T3. Reverse-T3 does not stimulate metabolism. It is produced as a way to help clear some T4 from the body.

Under normal conditions, cells continually convert about 40% of T4 to T3. They convert about 60% of T4 to reverse-T3. Hour-by-hour, conversion of T4 continues with slight shifts in the percentage of T4 converted to T3 and reverse-T3. Under normal conditions, the body eliminates reverse-T3 rapidly. Other enzymes quickly convert reverse-T3 to T2 and T2 to T1, and the body eliminates these molecules within roughly 24-hours. (The process of deiodination in the body is a bit more complicated than I can explain in this short summary.) The point is that the process of deiodination is dynamic and constantly changing, depending on the body's needs."

As levo and blood tests were introduced together if we add or take another thyroid hormone, i.e. T4/T3, NDT, T3 only, the results don't correlate and it is all about relief of clinical symptoms. This is also from Dr L which may be helpful. He disliked levo as he stated that both that and blood tests became No.1 prescriptions due to 'payments' to the professionals to prescribe it whilst ignoring NDT which used to be No.1. Plus all the money from tests which were not available before levo and blood tests. With NDT it was all about relief of clinical symptoms.

tinyurl.com/y2rdne2o

Dee8686 profile image
Dee8686 in reply toshaws

Thank you. Is your t3 over range? Just wondering since you know a lot about it x

shaws profile image
shawsAdministrator in reply toDee8686

I don't bother too much as I am well. It would be higher as I don't take T4 - therefore T3 will be higher than taking T4 alone.

Symptoms take priority over blood tests as I assume, not being medically qualified that if I took six blood tests a day every one would be different.

ncbi.nlm.nih.gov/pubmed/258...

Dr Lowe took 150mcg of T3 daily, so you'd expect his blood tests to be higher that's why he only took one initial blood test and concentrated on relieving patients' symptoms which he explains in the link above.

I am aware that many doctors assume that a high T3 means we're hyper but I don't think we'd have hyper symptoms as blood tests are for T4 alone.

Dee8686 profile image
Dee8686

Boshus Hillwoman trelemorele woukd appreciate your input too if poss please

SlowDragon profile image
SlowDragonAdministrator

Your folate level is rather low. Do you supplement a daily good quality vitamin B complex. If not this may be beneficial one with folate in not folic acid

chriskresser.com/folate-vs-...

B vitamins best taken in the morning after breakfast

Recommended brands on here are Igennus Super B complex. (Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks ).

Or Jarrow B-right is popular choice, but is large capsule

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Low ferritin can apparently cause high reverse T3

Vitamin D is perhaps/probably too high. How much are you supplementing? Dropping to a maintenance dose to keep vitamin D between 100-150nmol may be better

How do you take your T3

As 2-3 split doses?

Have you tried 3 doses per day - 8 hours apart

10mcg, 5mcg and 5mcg

What happens if you increase Levo ? Have you tried increasing by 25mcg

diogenes profile image
diogenesRemembering

On the face of it these results are weird and conflict with each other. High FT3, normal FT4 and elevated TSH simply don't gel. I would try to get a completely new set of FT3. FT4 and TSH results from another source that uses a different measuring instrument. This will decide if the results are all real or that one or more is being interfered with.

Dee8686 profile image
Dee8686 in reply todiogenes

I had my bloods sent to a Birmingham hospital of endocrinology by Medichecks.

These results are echoed by their tests.

Genova tests show high t3 but room to take more and bring down tsh. (Tsh also 4)

Gp tests show tsh 1.5 and t3 and t4 at the very top of the ranges...!!!

I have had conflicting results from various companies, but having O stick with one set! The irony is that the Birmingham hospital is nhs so it doesn’t mirror gp nhs tests yet agrees with Medichecks

diogenes profile image
diogenesRemembering in reply toDee8686

Can you find out exactly what manufacturers made the tests in each case?

Dee8686 profile image
Dee8686 in reply todiogenes

Roche machine and Abbott’s testing for me personally show different results completely

diogenes profile image
diogenesRemembering in reply toDee8686

Roche is sensitive to biotin, Abbott not. If you take any supplements with biotin in them, then Roche will give false results.

Dee8686 profile image
Dee8686 in reply todiogenes

No biotin!!!!

diogenes profile image
diogenesRemembering in reply toDee8686

So which test gives the strangest set of results? The most rational would give lowish TSH, highnormal FT4/3.

Dee8686 profile image
Dee8686 in reply todiogenes

Yes the gp uses Abbott’s testing and those results make more sense, however I’ve had tests done by Genova, blue horizon, Medichecks, nhs hospital at Birmingham and addembrookes who test their samples using different methods and even addembrookes came back as:

Tsh 2.5 and t3 over the top of the range on both samples ☹️

What you are saying makes sense, but it just isn’t reflected in tests and I don’t take biotin before hand

Dee8686 profile image
Dee8686 in reply todiogenes

Just had latest tests on Abbott’s testing with high tsh overrange t3 and low t4 again. I don’t know where to go from here

Angel_of_the_North profile image
Angel_of_the_North in reply toDee8686

Definitely no marmite, nutritional yeast or B vitamins? Do you eat a lot of liver, egg yolk. nuts, instant coffee or licorice?

Dee8686 profile image
Dee8686 in reply todiogenes

I stop b vitamins 7 days prior to testing, always

diogenes profile image
diogenesRemembering in reply toDee8686

The very fact that you can get wildly different results from different makes of tests is very very suspicious. If it isn't biotin, then it can be antibodies in your own blood that react with some test components in some methods and not in others. If I had a lab I could get to the bottom of this. I would take your serum, put PEG in it to precipitate out the antibody proteins, and retest the remaining fluid. If there is antibody interference the results would change. If not they wouldn't.

Dee8686 profile image
Dee8686 in reply todiogenes

That’s what the Birmingham endocrinology hospital did- they tested for

Interference and no antibodies were found. Their special nhs test mirrored the Medichecks results. This is why is is confusing! I would have preferred for it to have echoed the gp ones as they make the most sense. All this info and conflict was sent to addembrookes. They did their

Own tests and because their tests came back ‘notmal’ All

The previous testing and conflicts , antibodies checks etc get disregarded as they are only interested in their own tests

Dee8686 profile image
Dee8686 in reply toDee8686

Do you work in a lab?! Would love someone to get to the bottom of

It for me!!

I see no option to post the Birmingham antibody tests otherwise I would add them.

Heterophile antibodies were negative

diogenes profile image
diogenesRemembering

Regrettably I'm retired. But purely as a scientist saying it, I'd have loved to analyse your specimen in depth.

Dee8686 profile image
Dee8686 in reply todiogenes

I’d love to send you all my results if you wanted to look at them?!

diogenes profile image
diogenesRemembering in reply toDee8686

What I'd need is: date of tests, what instruments they were done on, what instrument the various testers used, and your personal evaluation re health at the various times. That would be a start.

diogenes profile image
diogenesRemembering in reply toDee8686

I've found something rare, but which might explain your results. The Roche assays use a reaction between a protein called streptavidin and biotin to get a result. I found a paper where a patient had antibodies against streptavidin. This would kill Roche assays in the same way that antibodies against those used in the tests would do. This though rare is a possibility I would check.

Arch Pathol Lab Med. 2013 Aug;137(8):1141-6. doi: 10.5858/arpa.2012-0270-CR.

Interference from anti-streptavidin antibody.

Rulander NJ1, Cardamone D, Senior M, Snyder PJ, Master SR.

Abstract

Immunoassays are commonly used for clinical diagnosis, although interferences have been well documented. The streptavidin-biotin interaction provides an efficient and convenient method to manipulate assay components and is currently used in several immunoassay platforms. To date, there has been no report in the literature of interference from endogenous anti-streptavidin antibodies; however, such antibodies would potentially affect multiple diagnostic platforms. We report results from a patient being treated for thyroid dysfunction who demonstrated a T-uptake result of less than 0.2 and a nonlinear thyroid stimulating hormone dilution that suggested an immunoassay interference. Protein-A sepharose pretreatment corrected the nonlinear dilution and revealed an interference trend of falsely decreased results, as measured by sandwich assay, and falsely elevated results, as measured by competitive assay. The results of streptavidin-agarose adsorption were comparable to adsorption with protein-A sepharose. To our knowledge, this is the first published description of an endogenous anti-streptavidin antibody interfering with clinical laboratory assays.

Dee8686 profile image
Dee8686 in reply todiogenes

Thank you- how would I get someone to test that for me? I wouldn’t know where to start!

Thanks so much though. And also I am happy to send you some of

The tests as long as you really don’t mind!

helvella profile image
helvellaAdministrator

Has anyone considered pituitary resistance to thyroid hormone (PRTH)?

Not many papers - this is from 1993:

Selective pituitary resistance to thyroid hormone (PRTH) is characterized by resistance in the pituitary gland but not in peripheral tissues. Patients have elevated serum thyroid hormone levels and normal or elevated TSH levels and are clinically thyrotoxic.

ncbi.nlm.nih.gov/pubmed/847...

Dee8686 profile image
Dee8686 in reply tohelvella

Would you be kind enough to explain that to me in layman terms please? I had an mri scan and pituitary was checked (alpha sunnits) all came back normal.

helvella profile image
helvellaAdministrator in reply toDee8686

It wouldn’t show on an MRI.

Will reply later.😀

Dee8686 profile image
Dee8686 in reply tohelvella

Thank you- id appreciate that and anything you would recommend!!!

I am not well, that’s all I know for sure

helvella profile image
helvellaAdministrator in reply toDee8686

Please understand that it was just a thought that came to my mind from reading your story.

My recommendation is to pay much attention to diogenes. He is a man who knows a lot.

Some heavy reading coming up!

This paper has a bit about TSHomas and resistance to thyroid hormone. The detailed explanations might help with understanding.

ncbi.nlm.nih.gov/pmc/articl...

Pituitary Resistance to Thyroid Hormone Syndrome Is Associated with T3 Receptor Mutants that Selectively Impair β2 Isoform Function

academic.oup.com/mend/artic...

Physiopathology, Diagnosis and Treatment of Secondary Hyperthyroidism

link.springer.com/reference...

Hillwoman profile image
Hillwoman

Hi Dee8686, responding as requested. I can't add much more to what GG, Shaws, and Diogenes have said already. I think it more than likely you have some form of resistance to thyroid hormone, as you suspect and others have suggested.

The high TSH does not make sense to me when your FT3 is so high. You already know about the possible effects of biotin on TFT testing, but you don't take it. Have you had a scan to rule out pituitary disease? There could be something wrong with the pituitary that causes it to pump out TSH. Occasionally, a benign pituitary tumour will develop that produces unnecessary thyrotropin.

I'm not sure about long term infections causing FT3 receptor block. There may be some indirect mechanism by which infections can do this, but I'll have to get back to you after I've done some research. I'm also having treatment for longstanding mycoplasma and bartonella, but haven't yet tested specifically for Lyme, so I'd be interested to know whether there really is a link.

Dee8686 profile image
Dee8686 in reply toHillwoman

Thank you- yes I have had mri scan and was all clear for adonema and I had alpha sunnits tested too which ruled out a pituitary problem.

Is your tsh not high then? You just remain hypo when bloods look optimal? I will let you know yes- I am having treatment for chronic systemic mycoplasma and chlamydia pneumonia which ‘might’ be effecting the receptors and causing resistance. That has been the theory from 2 functional

Medicine docs

Hillwoman profile image
Hillwoman in reply toDee8686

I haven't tested TSH in a long time - there's just no point with TH resistance. I keep an eye on heart rate, BP and core temps instead.

I don't understand how an infection would block cellular FT3 receptors directly, but I'll have to do some reading.

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