Suppressed TSH and getting optimum on NDT - Thyroid UK

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Suppressed TSH and getting optimum on NDT

Insomania profile image
12 Replies

I'm being treated by a private thyroid Dr for hypothyroid, I'm on NDT Armour and I've been slowly titrating for 12 months from zero treatment. I couldn't get treatment on the NHS.

My latest results show TSH at 0.01. My T4 and T3 are the highest they've ever been and I feel much better than I did last year but I don't yet feel optimum. My vitD and ferritin are the best they've been. When my dose increases by 1/4 grain I get this great 'uplift' and feel this for several weeks, then I'll start getting fatigue again and it's time to retest and increase.

At my last review, the Dr has stopped my increases of Armour and says he thinks my remaining symptoms are low cortisol (2 tests shown adrenal fatigue stage II). He suggested I retest throid in 3 months.

I'm only on 1 and 1/4 grain per day. This seems like a low dosage to me, and like I say, I don't feel optimum. (Note: I am a short adult 5' 1" and weigh 8st 3oz.)

I feel disappointed because I feel a lot better than I did last year but I want to get optimum.

I'm active during the day, I can garden and DIY again. My lingering symptoms are afternoon fatigue, night time teeth clenching, insomnia with getting to sleep (I sleep for 7-8h once I'm asleep, now I'm on Armour). I've got midnight munchies again. I've just had a bout of painful mouth ulcers affecting eating and noted the last time this happened was pre-Armour.

Is it possible my TSH could go up in three months?

I'll post my latest results. Advice appreciated.

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Insomania
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12 Replies
pennyannie profile image
pennyannie

Hello Insomnia :

I think it inevitable that your TSH will become low/suppressed as you become optimally medicated on NDT.

The TSH was originally introduced as a diagnostic tool to help identify someone dealing with hypothyroidism and was never intended to be used once the person became a patient and taking any form of thyroid hormone replacement.

Once hypothyroid and taking any form of thyroid hormone we should be dosed and monitored on our Free T3 and Free T4 readings and not a TSH.

NDT is the original treatment for hypothyroidism and used successfully for over 100 years by very many thousands of people and you dose to the relief of symptoms, and not a blood test.

When Big Pharma launched their synthetic T3 and T4 thyroid hormone treatment options on the back of NDT around 70 years ago we also then had introduced the ' science of the blood tests ' and the ranges and guidelines to work to.

When taking NDT the most important reading is the Free T3 and its best to just be consistent with times of fasting blood draws so you can compare and track what is going on.

I self medicate NDT and found it helped me to find my best dose by tracking on my physical symptoms of blood pressure, pulse and temperature AM and PM -

I built up my dose in 1/4 grain increments weekly - and I found my blood pressure and pulse remained constant which was reassuring and my body temperature slowly moved up from 35.4 to 36.6 where it tends to always hover, now around 6 years on.

I'm with Graves Disease post RAI thyroid ablation 2005 and became very unwell some years on ( RAI consequences though no NHS acknowledgement ) and after being refused both T3 and NDT on the NHS - decided to self medicate and do it for myself and am much improved as to how the NHS would have me.

I've not had a problem with cortisol and can't offer help there - but I do also take adrenal glandular and started these 2 years before I started NDT.

greygoose profile image
greygoose

Could the TSH rise again? If you're under-medicated, yes. But is TSH all that is tested? Because that is going to be low/suppressed when taking NDT because of the T3. That's what T3 does. And you can still be under-medicated even with a suppressed TSH. This doctor doesn't know much about treating hypo, does he!

Insomania profile image
Insomania in reply togreygoose

Well that’s why I was surprised because he’s been great up to this. Completely different approach to anyone else I’ve seen. He treats by symptoms and T3 and that’s now at 76%. The reports to share with my GP acknowledges TSH is suppressed due to T3 (because GPs get concerned about it). He’s tweaked my supplements through the year and they’re looking good. But I wonder if there’s now caution because it’s now at 0.01. I can’t see how I can get fully medicated…

Maybe I should look at the low cortisol?

greygoose profile image
greygoose in reply toInsomania

Well, it wouldn't hurt to look at cortisol, but it's still worrying that he wants to stop increasing the NDT. And, he really should have thought about cortisol before even starting you on NDT - either that, of just continue increasing the NDT and hoping the adrenals will sort themselves out - as they often do. It's like changing horses mid-stream.

Noelnoel profile image
Noelnoel in reply toInsomania

What’s your B12 like. Mouth ulcers often appear when deficient

Like greygoose says, endo should’ve looked at cortisol before starting you on NDT but at least he’s considering it now because he’s right, it may be the missing link because a level of FT3 at 76% is good and a lot of people would give their right arm to achieve that. That doesn’t mean raising it higher won’t help but checking out what’s happening with your adrenals first is prudent

I know from recent personal experience that getting my adrenals supported reaps benefits. I’ve recently increased Adrenavive and all sorts of good things are happening

Insomania profile image
Insomania

I’ve been doing some reading around cortisol and I can see that the recommended supplements from my thyroid Dr that I’ve been taking a year do include adrenal support ingredients, e.g. rhodiola roses, ginseng and l-glutamine.

I’m feel much more fatigued and low mood than when I wrote this post a month ago…

Insomania profile image
Insomania

*Updating this post cos I’ve just retested and the TSH has not increased but the FT4/FT3 has dropped down.*

I’m gutted because there had been a gradually increase throughout the last year titrating Armour (apart from a blip following covid at Christmas). But now I know, I can see why I'm feeling so rough again.

Latest test - 24th Sept 2024

TSH 0.02 mIU/L (0.27 - 4.2) -6.4%

Free T4 (fT4) 14 pmol/L (12 - 22) 20.0%

Free T3 (fT3) 4.6 pmol/L (3.1 - 6.8) 40.5%

T4:T3 Ratio 3.043 

Thyroglobulin Antibodies (TgAb) 15.6 IU/mL (≤ 115)

Thyroid Peroxidase Antibodies (TPO) 15.1 IU/mL (≤ 34)

C-Reactive Protein (CRP) 2.1 mg/L (0 - 5) 42.0%

Vitamin B12 179.7 nmol/L (25.1 - 165) 110.5%

Vitamin D 107 nmol/L (50 - 200) 38.0%

Ferritin 87 ug/L (13 - 150) 54.0%

28th May 2024

TSH 0.01 mIU/L (0.27 - 4.2) -6.6%

Free T4 (fT4) 17.5 pmol/L (12 - 22) 55.0%

Free T3 (fT3) 5.9 pmol/L (3.1 - 6.8) 75.7% (best ever!)

T4:T3 Ratio 2.966 

Thyroglobulin Antbodies (TgAb) 18.5 IU/mL (≤ 115)

Thyroid Peroxidase Antibodies (TPO) 9 IU/mL (≤ 34)

C-Reactive Protein (CRP) 1.7 mg/L (0 - 5.0) 34.0%

Vitamin B12 203 nmol/L (25.1 - 165) 127.2%

Vitamin D 141 nmol/L (50 - 200) 60.7%

Ferritin 129 ug/L (13 - 150) 84.7%

As said in this OP, I did not feel optimal in May, I wanted another increase but the thyroid Dr did not recommend the usual 1/4 grain increase because he said my symptoms were now cortisol related, I stayed at 1 & a 1/4 grain dose. (Note: I am a petite woman 5' 1" and weigh 8st 3oz.).

Supplements

I've been taking supplements daily since July 2023 recommended by thyroid Dr which imv have been working well.

I added in a probiotic (Optibac S. Boulardii) 7w ago, which I've noticed some positive improvements to my digestive system. I also added magnesium citrate at bedtime. I have bought an adrenal supplement but not started yet because I'm struggling with no energy.

Iron

My ferritin has also been drifting downwards since March 2024 (graph attached). I'm under nhs haematology and I get quarterly iron panel testing and iron infusions when ferritin is at 30. My last iron infusion was Sept 2022 and I was maintaining well on treatment until March 2024. (I did have cod twice in Dec 2023 and Jan 2024.) Ferritin is now at 45.

Symptoms

I do feel quite anxious and because the thyroid Dr had said in July that my symptoms are no longer thyroid, last week I was starting to consider asking GP for anxiety meds. I now feel the anxiety may be related to the low FT3.

Other symptoms: generally feel unwell, fatigue napping in afternoon again, craving sugar in afternoon, brain fog, sore mouth/ulcers, haemorrhoid flare up, teeth clenching at night and sometimes in the day. My difficulty falling asleep has not improved but I do sleep for longer 8-9h on Armour.

Has the FT4/FT3 lowered because I am under medicated?

NHS Ferritin Sept 2022-Sept 2024
pennyannie profile image
pennyannie in reply toInsomania

Hey there again :

As explained in the earlier reply to you above -

the TSH is not a reliable measure of anything once taking any form of thyroid hormone replacement and an unreliable measure of anything - once on thyroid hormone replacement.

The TSH was originally introduced as a diagnostic tool to help identify / confirm that a person was suffering with hypothyroidism and once diagnosed and on any thyroid hormone replacement we should be dosed and monitored on our Free T3 and Free T4 readings.

When taking any form of thyroid hormone replacement containing T3 - ( such as NDT ) -

the TSH will be low / suppressed and the TSH may never recover back into range - but this doesn't matter - as you should be dosed and monitored on your T3/T4 readings.

Considering you haven't changed your dose and are still taking 1 + 1/4 grains Armour - and if your blood test was under the same circumstances - there are slight variations throughout the results but nothing untoward that would cause such a difference in your T3/T4 results.

Conversion of T4 into T3 can also be down regulated by physiological stress ( emotional or physical ) depression dieting and ageing - otherwise I've no experience of cortisol issues - so can't really help on that front.

Insomania profile image
Insomania in reply topennyannie

I understand about TSH, thank you. It took me a few years to find a thyroid Dr who looked beyond TSH.

It’s my FT3 that has dropped significantly in the lastest test, back to where I started 14 months ago pre-NDT. It was at 75% of range in May.

I haven’t been ill, dieting or under stress. My doses, testing regime and lab are the same.

pennyannie profile image
pennyannie in reply toInsomania

Personally - I do not understand why your dose of Armour has taken so long to be increased and built up -

I increased my NDT weekly by 1/4 grains - others suggest fortnightly by 1/4 grains - but it seems to have taken you a year to get to 1 +1/4 grains so just thought perhaps there were other health issues I wasn't aware of.

Insomania profile image
Insomania in reply topennyannie

It was titrated slowly because I wasn’t on any hypothyroid treatment.

pennyannie profile image
pennyannie in reply toInsomania

Yes - I wrote this knowing that you were starting your treatment for hypothyroidism with Armour - NDT :

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