Why would my TSH remain out of range if my T4 and T3 is dropping after meds increase? Please can you advise?

[Gillybean1]

Hello , I thought that if my thyroid had changed recently that TSH would go up as my T4 and T3 have dropped down (DIO2+ with Hashi's) but this doesnt seem to be the case. I dont understand ?Feeling lousier if thats possible. All bloods taken at same AM time with same abstaining protocol re Biotin. These are minimum 6 week intervals too. B12 v high, D 98-101, Ferritin 77.8, FBC normal,Cortisol AM high 23 (presume NDT t3) rest normal.

May 2023, TSH 0.07(0.27-4.2), FT3 4.9(3.1-6.8), FT4 15.3(12-22). 1 1/4 gr NDT

Apr 2023 TSH 0.09 " FT3 4.3 " FT4 16.8 " "

Mar 2023 TSH 0.05 " FT3 5.4 " FT4 18.9 " "

Dec 2022 TSH 0.23 " FT3 4.72 " FT4 14.1 " 1 gr NDT

Any thoughts greatly appreciated, every best wish , G

[pennyannie]

Hello Gillybean :

So sorry you are feeling rubbish :

Taking any form of thyroid hormone replacement containing T3 will lower a TSH reading and why once on any form of thyroid hormone replacement the TSH is the least important reading.

We need to track on the Free T3 - though fully understand if being managed by a NHS doctor they will only be looking at your TSH.

Since you are taking NDT you track on the Free T3 reading -

Is this the first reading since increasing to 1 + 1/4 grains ?

Do you dose once - and what was the time lag from last dose to blood draw ?

B12 - very high ?? - maybe need to adjust down ?

Folate ?

Ferritin needs to be up and maintained at around100 :

I increased my dose of NDT weekly in 1/4 grain increments - is there any reason why you have built up the dose so slowly ?

I'm with Graves and post RAI thyroid ablation so with no own thyroid function.

Obviously having Hashimoto's throws spanners in the works as your own daily thyroid hormone production can be erratic as t gland becomes further compromised and disabled with you becoming increasing hypothyroid and needing more, not less, thyroid hormone replacement.

Are you aware of having experienced further ' swings ' in symptoms ?

[Gillybean1 in reply to pennyannie]

Hello Pennyannie,

Thank you for taking the time to reply. Ive been on NDT since 2015 up to 2 1/2 grains in the past, and in that time may have moved up doses too quickly back then and missed my sweet spot etc. Started again, have tried T3 only for a year 2020 as Endo suggested, which made me almost bedbound, then NDT /T3 2021 to no avail.As Nature Throid was suspended I went back to Armour 2022, got my Folate (19.98) ,HCL,Vit D,Ferritin 77.8 now adding tiny amount of iron, B12 active (>150) ,Mg all in order, and this time increased more gradually with NDT, moving it up either 1/4 or 1/8 grain every 6 weeks as I seem to be hypersensitive.

I was just baffled as to why TSH didnt rise when T4 and T3 are falling? It maybe that I am just undermedicated, Ive had a bereavement this Jan and a nasty rib injury in Mar (pain off the scale) so maybe traumas have caused a Hashis episode.......?But why has TSH stayed the same?

I do get bogged down with trying to please New endo (aahh exhausting standing up for self all over again like Groundhog Day) who wants to see flicker of TSH in range this is a Gestational Diabetes Specialist, and I dont have either!! BUT it simply doesnt work for me, I know I do 'better' if I can call it that, if my T4 is approx 18-20 and T3 approx 6,.........maybe I need a pinch of Levo and slightly less NDT. Either way may TSH become undetectable.

You asked of spacing of meds, I take on empty gut 2 hours before food between 7-8am 3/4 grain, and 2nd does 7.5- 8 hrs later , mainly so I can get supps in at the 4 hour window, but the latter dose is sometimes 1hour away from food. I have tried an1/8 at bedtime but I feel a bit ratty in the morning...maybe I need to give it more of a chance. Intuitively it feels wrong....I have tried 5, 5.5,6,6.5,7,7.5,8 hour spacings in the past too.Well ive been at this 8th year now!!

Sorry to be a moaning Minnie, I am so tired of trying to fix this, trying to please endo, but ever feeling well.

Every best wish to you, G

[pennyannie in reply to Gillybean1]

I think you need to start pleasing yourself BUT if your endo is the source of your having a prescription for NDT - that's a bit more difficult but if s/he needs to see a TSH response - I don't know how you do that without making yourself more unwell.

So reading on these results are more from 1 + 1/4 grains rather than 1 grain ?

I take 1 + 1/2 grains but do not have a thyroid and take just 1 dose at around 3.00 am :

Have you tried taking it in 1 go ?

[Gillybean1 in reply to pennyannie]

Hi Pennyannie,

No such luck with Endo NDT script unfortunately, I was one of many here that had to self medicate or crumble. Then I had an Endo that was listening, but he retired without any notice and ive been left to muddle on with the newby mentioned who loves quoting 'science based data'.... it felt like a bit of a dig really,but she did say it 4 times in the consultation. Didnt know NDT..... too young.

Yes these latest results were on 1 1/4 grain. In the past I took Nature Throid nearly in all one dose, but I fancy that was weaker. I find now a few years have passed and weaker/older ,and my AM cortisol is always up a bit (poss T3 stimulation) that Armour seems a bit stronger T3 wise, I might be wrong....but you are right it might be worth trying again in a bgger AM dose and see if it gives me more oomph ...I know John Lowe swore by all i one dose early, and Paul Robinson always reckons start no later than 8Am and no later than 3pm with T3 included type meds. It may be that my adrenals are so depleted of thyroid meds for years (not the typical way round I know, but then im quirky)that i pump up cortisol to compensate.

Has it been easy to fall back to sleep at 3Am without a T3 kickin at 5Am ish? If I try that , how would I start.....? Would I start shifting the 8Am dose to 7 Am to 6 Am to 5Am and so on day on day?

Thank you for taking the time to reply to me.....Have we possibly communicated on PA forum awhile back?

Every best wish , G

[pennyannie in reply to Gillybean1]

I don't think you need to look at my 3.00 am-ish toilet beak as your starting point :

I have no problem falling back to sleep but am awake by 5.30 - 6.00am, which suits me and follows the circadian rhythm of the body and means I can have a coffee first thing when I wake up.

Why not stay with your routine and just take it all at 8.00 am - leaving the rest of your day free of another dose and see how you go ?

I do also take adrenal glandular - started these about a year before I started NDT as having had RAI thyroid ablation read that this toxic sh-t is taken up by other glands and organs in the body ( to a lesser extent ? ) including the adrenals, gonads, kidney and breast tissue - it's such a ' dirty ' indiscriminate dangerous treatment - and it's still encouraged as a treatment option in what we presume are health care settings - sorry I digress.

If you can build up and take the NDT all in one go in the AM - after a few weeks you may well plateau and able to introduce a second dose in the PM and thereby increased your dose and hopefully relieved some symptoms.

I do dip in the PM - but a 10 minute nap sets me up til around 10,00 when I go to bed.

I don't seem able to take a second dose after 11 00 am as I'm kept awake - and not aware I had any benefit from a second dose anyway.

I am 75 - living alone - and don't know quite what to expect, but I do have back my independence, able to feel confident again and drive my little car, take care of my own garden, mow lawns and generally am very much improved from how the NHS left me.

I'm with Graves post RAI thyroid ablation 2005 and yes, your name rang a bell !

[Gillybean1 in reply to pennyannie]

Aaahh dear Pennyannie,

You have made me smile with the 'bladder alarm' and given me a boost of hope to keep trying different things, thank you. I inherit my Mothers wilfulness to survive, but every now and again as my Father used to say "dont let the bugg**s grind you down" ,....sometimes they do.

You really have had to push hard too to get past the 'tunnel vision',and I am very glad you have found a quality of life now. We are very fortunate to have an NHS, and one that pioneers amazing work. With thyroid issues, I dont know why there are no thyroidologist anymore, just endocrinologist and then we are tick-box patients, not individual. I remember meeting Dr Peatfield in 2012 who championed adrenal glandulars. Many years before this disease I had taken them in my thirties. When I met Dr P in my late 50's he said that I would have to experiment for myself whether I needed glandulars first to heal and then tolerate NDT (the most common way round for most of his patients) or as it turned out, I seem to be the other way ie fix the NDT to tolerate glandulars, as they made me very shaky.

I will try taking the whole dose early and see what happens. Well done to you getting out there and 'being' and living. I have lost my confidence to go out at all, I can walk to the end of the road on a good day, but not confident to get behind a wheel 'in case' my energy runs out and I cant get back.

Have a lovely weekend , enjoy your garden, its such a lovely time with the new leaves looking fresh and expanding ,rose buds opening, a Wren feasting on my greenfly.

Every best wish to you, G.

[pennyannie in reply to Gillybean1]

Dr P's book is still my " go-to " and where I learnt basic body physiology and how everything within the body works together and nothing is without cause and effect.

I started on the adrenal end as I could buy them without a prescription and at the time, seriously believed the NHS would then see me ' ready ' for an alternative treatment option to T4 monotherapy.

Hey Ho - naive to the end and now DIY !!!

Take good care:

[Gillybean1 in reply to pennyannie]

Indeed. DIY we must. I worry for those that couldnt for multiple reasons.

Every best wish, and thank you for your support. G

[tattybogle]

I think you are reading too much into these very small differences in your TSH / fT4 /fT3 results : You need to bear in mind that these levels will go up a little /down a little /up / down all through the day .. if you tested TSH 0.05 and then tested again 45 mins later , you might get 0.07 , and then of you tested again after another 45 mins you might get 0.04 (TSH is not produced in a steady stream ~ it is produced in little pulses through the day .. see graph below)

(same with fT4 and fT3 results to some extent , testing the 'free' part of T4 / and 'free' T3 is technically extremely tricky , they are measuring such tiny amounts of T4 /T3 to start with , and they have to separate the free T4 from the total T4 meaning the amount is even tinier. Even if you test the SAME sample twice, you will not get exactly the same result both times.. the lab are allowed a small % variation )

May 2023, TSH 0.07(0.27-4.2), FT3 4.9(3.1-6.8), FT4 15.3(12-22). 1 1/4 gr NDT

Apr 2023 TSH 0.09 " FT3 4.3 " FT4 16.8 " 1 1/4 gr NDT

Mar 2023 TSH 0.05 " FT3 5.4 " FT4 18.9 " 1 1/4 gr NDT

Dec 2022 TSH 0.23 " FT3 4.72 " FT4 14.1 " 1 gr NDT

All 3 TSH result since your increase to 1 /1/4 gr are very similar , and they reflect the dose increase.

.TSH levels .. lots of little 'mini' peaks. not a smooth line.

[Gillybean1 in reply to tattybogle]

Hi Tattyboogle, Thank you for taking the time to reply. I didnt realise that these were small changes in TSH, and I thought the difference between T3 5.4 and T3 4.3 was a big drop.Either way Endo will have a negative pop at me for TSH being out of range, despite my body prefering T4 18-20 and T3 at 6.

Thank you for the graph, thats really useful, where did you get it please,? I can take it to my F/U appt......every little thing helps,

Every best wish to you, G

[tattybogle in reply to Gillybean1]

frontiersin.org/articles/10... Within-Person Variation in Serum Thyrotropin Concentrations: Main Sources, Potential Underlying Biological Mechanisms, and Clinical Implications

[tattybogle in reply to tattybogle]

more ammunition for use in 'low TSH' arguments in links in these posts :

healthunlocked.com/thyroidu... useful-evidence

healthunlocked.com/thyroidu.... tsh-is-just-the-opinion-of-your-pituitary-about-your-dose-but-your-pituitarys-opinion-is-a-bit-warped-once-you-take-thyroid-hormone.

[Gillybean1 in reply to tattybogle]

Hi Tattybogle,

Thank you for these,well I am going to be popular next F/up ! I am nearly already at 0.5 TSH , and in the past when on much higher doses NDT back in 2018 my TSH was at its lowest 0.013 for a year or so, which caused comment......

Thank you for taking the time to reply, its very kind of you. Every best wish , G