Does anyone have 'Central Hypothyroidism'? Where your TSH is undetectable?

[Angie33]

Hi, well after 3 years of battling with my thyroid results. My current dillema is...

My T3 is low to mid range, T4, well under the normal range and TSH 0.01. As a result, my endocrinologist will not increase my T3 despite there being scope to do so, because my TSH is almost undetectable.

I then saw a private holistic GP, who said I have 'Central Hypothyroidism' I'm unsure what the difference is between this and an under active thyroid. I thought they were the same.

Anyway, as a result, he mentioned I should ignore my TSH and increase my T3 and T4. I am worried about doing so as my endocrinologist said it is dangerous to have an undetectable TSH.

Is anyone else experiencing this? I would function better if I increase my T3 and T4 but scared to do so.

It has also been suggested I get a scan of my thyroid in case I have a benign tumour, as this can play havoc with my hormones. However, my endo won't agree to this (despite paying for this myself) She wants me off all meds for 6 weeks to find my new base line. I do get where she is coming from. However, coming off meds for 6 weeks would be horrendous, therefore, trying to find an endocrinologist who would refer me for a scan. Just so I can eliminate this being an issue.

All my other hormone levels which could affect my thyroid are within the normal range. Vit B12, ferritin etc

Thanks in advance!

Just not sure what my next move should be..

[GlowCoach Administrator]

Please can you tell us what your are currently taking.

Could you also share your latest blood results?

Can you also share vitamin results with ranges for each test. Just within the normal range is not good enough, we need OPTIMAL results.

If you are currently taking T3 then its not surprising you have a very low TSH. This is just normal and to be expected with almost any amount of T3. Its just what T3 does as it is an active hormone. Many Endo's doctors do not realise this.

Personally I would not recommend stopping thyroid hormone for 6 weeks as it will likely take you at least a year to get back to where you are today symptom wise. I think its an unsafe suggestion to do that.

Your holistic GP is talking more sense although possibly wrong about central hypothyroidism. When on T3 or Levo + T3 treating by free hormone levels is the way to go. No scan necessary.

[Angie33 in reply to GlowCoach]

Thank you so much for your informative reply, much appreciated.

Latest bloods:

T3 - 3.9 Range 2.4 - 6.0

T4 - 8.6 Range 8.0 - 19.1

TSH - 0.01 Range 0.35 - 4.94

Folate 20.4 Range 10-30

Vitamin B12 84 pmol/L

white and red blood cells very low. As a result, holistic GP gave me 2 injections with Vit B12 boosters. I am also on iron tablets, vitamin D and Vitamin C supplements.

I also now take 200mg selenium and 2 iodine drops daily.

I am keen to add metavive I to my daily 40mg of T3. I've been advised to take T4 as well despite my body not converting T4 to T3 very well. If I do this, my TSH will be undetectable.

I feel so confused just now and don't know what to do. My metabilism is very sluggish. I have put on more weight and now can't fit into my clothes. Desperate to work out but have less energy too.

Previous results on metavive procine were

T3 - 3.4

T4 <5.4

TSH 0.04

Thank you again!!!!

[GlowCoach Administrator in reply to Angie33]

Sorry for another question but when did you take your last T3 before this test?

Recommended timing is 8-12 hours before blood draw otherwise a false low is recorded.

No vit D result. How much are you taking?

No ferritin result.

[Angie33 in reply to GlowCoach]

Thank you for asking. I had a 12 hr break before my blood test.

Ferritin results was 67.6 range 10.0- 250.0 U

Folate 7.6 range 3.0 - 20.0

Vitamin D 91 nmol/L prior to the last 3 weeks of sunshine! Hoping it is higher now

[GlowCoach Administrator in reply to Angie33]

OK so the time spacing was fine and your FT3 is at at only 42% of its range which is likely not enough. If you can get more T3 added then great. 40mcg T3 as a monotherapy is a relatively low dose.

What supplements are you taking? I need to know brand and name to work out how much you are taking. Clearly you need a separate 1000mcg methyl B12 sublingual or mouth spray such as:

cytoplan.co.uk/vitamin-b12-...

amazon.co.uk/Better-You-Boo...

You have now given me 2 different numbers for folate. Which is the latest one please?

Folate 7.6 range 3.0 - 20.0

Folate 20.4 Range 10-30

According to your latest results your TSH is already suppressed. It will make no difference to get to the dose your body needs anyway.

Recommend finding a new Endo or going with the holistic GP but you likely don't need a thyroid scan.

[Angie33 in reply to GlowCoach]

Hi Jaydee,

Thank you so much for reaching out.

I am on Thybon 20 Henning (40 mg) My T4 has been down at 5.4 before. Probably a true reflection of where it is now (I had been on metavive previously before returning to T3 2 months ago) Test was taken after 6 weeks back on T3.

I am currently taking 100 ug selenium daily

Hema-plex (Iron with C, B6, B12 & zinc) 43mg daily

Liposomal Vitamin C 1000mg daily

Metabolics vitamin B12 100ml drop daily

NAC 600mg daily for a sluggish liver (which I don't have but had been suggested as a possible issue, so will just finish the bottle as no harm giving liver a boost.

I also take bettervitis pro&prebiotic 30B CFU daily

I have a very sluggish metabilism too, feel so fat and unhealthy just now. A size bigger than usual also brain fog pretty bad with thinner hair

[GlowCoach Administrator in reply to Angie33]

The Metabolics B12 is a pretty low dose. It contains 86.5mcgs per dose and you really need 1000mcgs. Please add in one of the ones I suggested or swap it out.

We usually recommend a B complex to help keep all the B's in balance. You could add that also. This B complex has all the right vitamins at a not unreasonable cost for 90 days supply. amazon.co.uk/Liposomal-Soft...

Anything that you take with iron is not going to absorb well so I would discount anything added to iron. Are you taking iron well away from everything else?

You will have a sluggish metabolism if your vitamins aren't optimal and thyroid levels also less than optimal.

I cant really advise about Metavive as I have no experience of that supplement.

[Angie33 in reply to Angie33]

Hi Jaydee,

Apologies, it was my folate that is 7.6. My ferritin is 67.6.

Thank you for the advice on Vit B12 and iron etc

Upon reading your advice, combined with my holistic GP. I will stay on 40mg of T3 and add metavive or thyroxine too!

I am left feeling pretty rubbish as a result of my TSH dictating my dose!

[SlowDragon Ambassador in reply to Angie33]

You need to retest ferritin and folate

Are you currently taking any levothyroxine?

Was last dose levothyroxine 24 hours before test

Day before test ALWAYS split T3 into 2 or 3 doses spread through the day with last dose approx 8-12 hours before test

[Angie33 in reply to SlowDragon]

No levo only T3 (40mg) I split this into 4 doses throughout the day.

[SlowDragon Ambassador in reply to Angie33]

Your Ft4 is surprisingly high for someone on only T3

[helvella Administrator in reply to Angie33]

2 iodine drops

In addition to questioning why, etc., it is important that you know that there is a big range of strengths of iodine products. 2 drops means nothing without also knowing its strength. Or its conversion into some more formal quantity.

[helvella Administrator]

Sit in the driving seat of your car.

Press the accelerator.

It feels as if the pedal is disconnected. It does nothing.

That is central hypothyroidism.

Press the accelerator and, however hard you press, little or nothing happens.

That is "under active thyroid".

In both, the result is inadequate thyroid hormone. But one is because the pituitary is not producing (enough) TSH. So not telling the thyroid to make more thryoid hormone.

In the other, despite shouting at the thyroid, the thyroid itself cannot make enough thyroid hormone.

In both cases, you are not going to win a race in your car. But the detailed reasons are different.

[Angie33 in reply to helvella]

Thank you so much for explaining! Good explanation! I am still at a loss in which direction to turn though so going to find a different endocrinologist. Do I ignore my low TSH or is this dangerous therefore, I stay on a low T3 and T4. Such a minefield eh

[helvella Administrator in reply to Angie33]

Ignore your TSH.

But do whatever is needed to get your FT4 and FT3 to where you need them.

That is, you probably need to take at least levothyroxine. If you don't, you will remain effectively hypothyroid.

However, if the pituitary is failing to produce enough TSH, could it also be failing to produce enough of the other hormones it is supposed to produce?

There is a section on Human Hormones in my Vade Mecum which lists all the hormones produced by the anterior pituitary.

helvella's Vade Mecum document is available here:

helvella - Vade Mecum for Thyroid

The term vade mecum means:

1. A referential book such as a handbook or manual.

2. A useful object, constantly carried on one’s person.

helvella.blogspot.com/p/hel...

[HeartWoman]

I have "normal" TSH, but my T4 was hanging on by a thread. I have no idea what my T3 was during this time. I am 2 weeks on 100mcg of T4 and 5mcg of T3, so early days yet. I know that when I was on NP Thyroid, my T4 went well below range and my T3 went high. I was miserable. Are you sure you don't need some T4?

[greygoose]

I then saw a private holistic GP, who said I have 'Central Hypothyroidism'

Do you know why he said that? It is impossible to tell if someone has Central Hypo once they are on thyroid hormone replacement - especially when taking T3. The TSH will be very low, anyway, however much the pituitary is capable of producing.

Do you have your blood tests results/ranges from when you were diagnosed? That would tell you if you have CH. But, in any case, the treatment of hypothyroidism is the same no matter what the cause.

he mentioned I should ignore my TSH and increase my T3 and T4. I am worried about doing so as my endocrinologist said it is dangerous to have an undetectable TSH.

Endos know next to nothing about thyroid. You would think that, given their title, they were experts in all things hormonal. Not so. 99.9% of them are diabetes specialists with weird ideas about thyroid, but no real knowledge. It is not dangerous to have an undetectable TSH - mine has been zero for many, many years. And the reason is: I don't need it. My pituitary has detected that I have sufficient thyroid hormone in my blood, so my thyroid doesn't need anymore stimulation, so it's stopped producing TSH - Thyroid Stimulating Hormone. And that's just about all it does. All these horror stories about low TSH causing heart and bone problems, are just that: stories, invented by doctors who know nothing about thyroid, based on the blood test results of people with Graves'. With Graves', people have very high FT4 and FT3, and therefore suppressed TSH. But, it is the long-term, high T3, the active hormone, that does the damage, not the lack of TSH. Doctors appear to have great difficulty sorting out cause from effect and often end up putting the cart before the horse!

Don't worry. Increase your lio. It is far more dangerous to have low FT3 than low TSH.

[Angie33 in reply to greygoose]

I can't thank you enough for your reply!!!! This is what I really needed to hear. T3 is the hormone to keep an eye on not TSH! It does get scary when there is such conflicting advice though. I decided to re-introduce metavive along with my T3 yesterday, thus giving me more T3 and T4. i just wasn't too sure and hence worried a zero TSH was going to be damaging and eventually lead to a stroke or heart attack. The body is so fascinating. I wish I knew more about how everything worked. Although I fee; I have learnt so much about the thyroid over the years. Still learning though! Thank you greygoose.

[greygoose in reply to Angie33]

We never stopl learning! The body is so incredibly complicated, I doubt anyone is ever going to completely understand it.

[Gingernut44]

I notice you add two drops of iodine to your supplementation, have you actually had a test and found to be deficient in iodine, otherwise, it is not recommended that hypos take iodine. SlowDragon

[Angie33 in reply to Gingernut44]

Thanks! I only took iodine drops for 2 weeks, decided against it after doing more research and reading your reply. Thanks I did get 2 Vitamin B12 infections (boosters) which have helped me. I feel I am hopefully getting there now I am going to increase my meds slightly before another test in 6-8 weeks' time.

[Gingernut44 in reply to Angie33]

Hope it works, good luck

[Angel_of_the_North]

I have central hypo, but my TSH is not undetectable - varies between about 0.2 and 0.7. For me, TSH is higher when FT4 is higher (which is actually as it should be as it means that extra TSH is telling thyroid to produce more T4). With central hypo, it means that your pituitary or hypothalamus doesn't generate the right signals to generate TSH to tell your thyroid to increase FT4 production. Your thyroid might be quite OK, just not being given the right signals. If FT4, FT3 and TSH are all low (or low in range) and you have symptoms, it is probably central hypo and TSH should be disregarded, as it is not a guide to levels of thyroid hormone. No way should you stop or decrease your thyroid hormones unless your Ft3 is over range - many endos have this daft idea - but I think those that suggest it should be given a high dose of anti-thyroid meds for 6 weeks to see how they feel

[Angie33 in reply to Angel_of_the_North]

Hi, thank you so much for your reply! What you say makes perfect sense! I was just too scared to increase my dose but now l am! 😀 Thank you again!

[humanbean]

She wants me off all meds for 6 weeks to find my new base line.

As far as I'm concerned, any doctor suggesting this to a patient is automatically a sadist and also incompetent. I would find another doctor, and would check before seeing them that they don't use this form of torture on their thyroid patients.

I would guess that your doctor wants to see how much your TSH rises without any treatment. But if TSH has been low for a long time it might never rise again, or it might take many months. And even if it does rise in six weeks there is no guarantee that it would rise to the level it did before you started treatment with Levo, T3, or NDT.

I would function better if I increase my T3 and T4 but scared to do so.

You should read this link :

healthunlocked.com/thyroidu...

[Angie33 in reply to humanbean]

thank you!!! Heading off for the weekend but will read the article when l return! Much appreciated!!! X