Surprising thyroid results

[Jamima]

I was put on 2 grains of armour by a private thyroid doc, at that point I was feeling ok-ish on 50 Levo and 6 t3. I took 2 grains for 3.5 weeks and started to decrease as I was feeling rapidly and increasingly unwell. I also have a low cortisol output all day and this may have contributed to feeling unwell in the armour. I was on 1 grain for 3 weeks and 1/4 grain for about a week when I tested for my follow up with the doc. My results after the armour:

TSH: 0.025 (0.27-4.2)

T3 4.9 (3.1-6.8)

T4 10.4 (12-22)

I stopped all thyroid and introduced folate supp, DHEA 15mg and 1x adrenavive II on 12/8/24. I want to test my thyroid fairly regularly to see what happens on the way down and the monitor my health results from yesterday (great service!) are:

Same ranges

TSH 2.58

T3 4.1

T4 12

I feel well, although tired if I miss the adrenavive which I’ve tested a couple of times, but my energy and stamina is pretty good just now. I’ve had palpitations pretty steadily for the past 2-3 days but not today and wondered if that was thyroid and/or adrenavive/dhea related.

Is this a fairly standard reaction ie tsh and frees to stopping thyroid supps? Any other insight would be gratefully received.

[Bertwills]

I have read that at first you feel really good when thyroid supplementation is stopped & then the symptoms start reappearing with increasing severity. It can take a long time to get back to a good level. I wouldn’t leave it long before restarting. Couldn’t you return to T4 & T3 alongside the adrenal supplements? Your TSH is rising.

[Jamima in reply to Bertwills]

Thank you Bertwills - I was hoping to try and use adrenal/dhea supps for a bit longer so that my levels were better before recommencing thyroid hormone as I always seem to come unstuck with thyroid regardless of which type/dose I use, I get to a point of just not functioning, my face puffs up, my joints ache, the brain fog and fatigue are relentless to the point that I just have to stop to stabilise. I’m aware that this might be secondary hypo and wondered if my tsh and t4 rising this much in 10 days is an indication of anything?

[DippyDame in reply to Jamima]

It most likely shows that TSH fluctuates throughout the day and is not a reliable marker.

Were both tests carried out at 9am when TSH is highest

Science shows that FT3 is the most important result followed by FT4

[Jamima in reply to DippyDame]

Yes, all protocols were followed.

[Jamima in reply to DippyDame]

Fluctuates from 0.025 - 2.58 in a day? I may not know as much about this thyroid business as you, but I think that’s a Herculean task for the pituitary, no?

[DippyDame]

Replacement thyroid hormone is not a supplement (stopping thyroid supps) which since you are hypothyroid, cannot be stopped and started.....you need a constant steady dose....for life.

Neither can thyroid levels be accurately measured before you have been on a steady dose for at least 6 weeks

Your approach to thyroid medication, and the frequently changing dosing methods you are using, is confusing your body....it won't work.

11 months ago you wrote, "I understand about sticking to a dose for 6 weeks" yet here we are 11 months later and you are still not following protocol.....I took 2 grains for 3.5 weeks and started to decrease as I was feeling rapidly and increasingly unwell

Your dose will never settle adequately to give an accurate reading if you continue like this.....it can take many weeks, months even, to achieve this, and patience is paramount

Endo advice of 2 grains of Armour (120 mg) contains 76mcg T4 + 18mcg T3 which was a considerable increase from your previous dose of 50 levo + 6mcg T3

It sounds like too much too soon which most likely caused you to feel increasingly unwell

Levo is a replacement hormone, not a top-up to what is already in the system....so if, for example 50mcg makes you feel worse that is basically the body asking for more hormone.

I'm not sure you understand that when increasing levo, for example, as you start to increase the dose you can hit a point where you feel worse which suggests you need more Levo....and not because you cannot tolerate the medication. We have to both understand dosing and to persist with it.,

It's a tricky balance

The balance of hormones in Armour may not have suited you.....but without correct testing it's impossible to say.

50mcg levo is only a starter dose so I'm surprised your medics didn't increase your levo to 75mcg after the first 6 weeks followed by another test and dose adjustment.

On what basis was T3 added...there seems no obvious need for it at that early stage...it would also reduce the already low FT4 level.

I'd suggest you drop current dose for a few days then go back to basics and start with 50mcg levo, test after 6 weeks ( you may feel rubbish but stick with it....there is no quick fix!)

After the test increase to 75mcg levo then again wait 6 weeks and test again.....

You may then need another increase to 100mcg depending on labs.....maybe even more.

Along the way you may discover your T4 to T3 conversion is poor ( high FT4 with low FT3) and only then introduce T3.....starting 5mcg ( or lower) daily.

Essential to optimise vit D, vit B12, folate and ferritin and to test antibodies TPO and Tg if not already tested.*

Once you reach your therapeutic dose you should feel well

Meantime stop constantly tweaking your dose

Good luck and take care.

[Jamima in reply to DippyDame]

Thank you. I’m not currently using any thyroid hormone. I do understand that it’s not a ‘supplement’ it was just an easy abbreviation and I also understand the mechanism by which it works ie. it suppresses our own production and takes over the levels. I’m not ‘stopping and starting’ lightly, I simply have NO OPTION. I have a business to run, no partner and no family to help, I’ve no problem with that but I need to decide when something is not working for me and that has happened several times with thyroid hormone. I suspect the reason for that is adrenal related and that’s why I introduced t3 - it was suggested that it might help my adrenal output but it made me feel worse. I’m not talking about slightly rough-worse, I’m talking about unable to function, face swelling, joints aching staring at the wall all day - worse. I’m really not sure that some people have been there with thyroid hormone, but why on earth would I not push through with something I know will make me better? In terms of my body needing more, I’ve tried more, and that was much, much worse. Thanks again.

[DippyDame in reply to Jamima]

Have you had a Short Synachten Test to test for adrenal insuffiency?

One example -

gloshospitals.nhs.uk/our-se...

Has the low adrenal output you refer to been diagnosed as Addison's Disease?.

I have a rare thyroid condition and had to do a lot of research to establish the cause....it left me barely able to function for a long time. Yes, I've been there with bells on!

If your thyroid levels are low you will suffer.

I'm sure with your experience you will know that a therapeutic level of T3 is vital.....I'd suggest you need to address that as a matter of priority because your level is abysmally low. Thyroid hormone is vital to every functions in the body.

Low thyroid hormone = poor health

I think you may be ) putting the cart before the horse but only you can decide what you do....right now your plans doesn't appear to be working.

[Jamima in reply to DippyDame]

Thank you, yes I’ve had 2 SST tests, one with and one without acth levels measured, they showed that my adrenals work when stimulated, ‘when not stimulated’ was never followed up. No, I don’t have Addisons. DippyDame your last comment is really unnecessary, and smacks of passive aggression, my plan to increase dhea and cortisol is simply because they are under-range/low and as every other treatment has failed, it seems prudent to give this a shot. To say it doesn’t seem to be working is unkind and unfair given I only started on 12/8/24. Please don’t reply to my posts, I’m having trouble figuring this out and your attitude is not helping, you’ve stated all sorts of things that aren’t true and insulated others. I’ve come here for guidance and you’re not doing that, you’re just upsetting me. Please stop it.

[DippyDame in reply to Jamima]

OK....I think I deserve a right of reply to your comments which claim I'm unkind, passive aggressive, unfair, lying, insulting to others, offering you no guidance and upsetting you.

I'm truly sorry you find this so hard, but as  Karen-Eleanor concurred below,

"He (Dr Skinner) reassured me that once my thyroid was controlled the adrenal stress would disappear 🫠- it did. I now know that if I feel stressed my dose needs tweaking."

I rest my case.

Good luck.

[Jamima in reply to DippyDame]

DippyDame - Dr Skinner gives one theory amongst a multitude of theories amongst innumerable patients. The above could be measured, at best, as a minuscule - negligible trial on a methodology, adding that I have already had my frees at good levels and a 4 point cortisol test showed no change. I didn’t say upsetting to others, I said upsetting to me.

[Karen-Eleanor in reply to DippyDame]

I agree with Dippy Dane - treating hypothyroidism is not a sprint but a marathon! It is essential to stick to the same dose no matter how awful you feel - it will get better when you settle on the correct dose.

[Jamima in reply to Karen-Eleanor]

Thank you. Do you have any experience with low adrenal output and under-range dhea in relation to thyroid? That’s my primary concern at the moment and one which I’m trying to address as I think it might be the weak link in my thyroid hormone tolerance.

[Karen-Eleanor]

Yes my adrenals were very stressed when I was finally diagnosed about 20 years ago by Dr Skinner. I had many low adrenal symptoms as well as hypothyroid symptoms. He reassured me that once my thyroid was controlled the adrenal stress would disappear 🫠- it did. I now know that if I feel stressed my dose needs tweaking.

[Jamima in reply to Karen-Eleanor]

Many thanks, do you also have antibodies?