NHS endo ....

[muppetme]

Brief history - hypo symptoms started 2018 but normal blood results. TSH started to rise 2019, but GP prescribed levo before my TSH reached the magic number of 'over 10', so been some doubt as to my hypothyroid diagnosis as far as the NHS is concerned. Had two separate sets of medichecks blood tests late 2019 whilst taking increasing doses of levo that still showed above normal TSH (but less than 10), below normal T4, & normal T3. Also had both types of thyroid antibodies. At that time felt as though I was 'hyper' on the levo, but still had the most debilitating hypo symptoms of brain fog, poor sleep, exhaustion & breathlessness etc etc.

After several frustrating GP appointments when I was told that no NHS endo in Gloucestershire would ever prescribe liothyronine, I started taking it on my own (combo with levo), felt instantly better & eventually near normal again when I'd found the dose regime that worked for me.

Fast forward to early 2022 was worried that I might not be able to continue to afford to buy my own liothyronine, and around the same time a locum GP panicked about my off the scale low TSH, and was referred to NHS endo. After multiple appointment cancellations & postponements I finally got my first NHS endo appointment earlier this year.

First appointment wasted with pretty much a lecture on why she couldn't prescribe T3 without first taking me off it completely to prove I needed it (a terrifying prospect having been stable for five years), & then her report letter raised doubts about whether I was ever hypothyroid at all & had menopause been considered 🙄. Needless to say she had not taken a full history, not even taking my offered list of initial symptoms.

For follow up appointment went fully prepared for the battle & armed with all my medichecks results over the years with emphasis on severity of symptoms written down so I didn't forget. Also had comparative results of private Nuffield health & fitness screens - in 2018 at peak of my symptoms before any treatment, age 52, the fitness screen suggested that I had the "heart age" of a 61 year old! Six years later, stable on T3/T4 combo, with no other lifestyle or health changes, age 58, I had a much improved "heart age" of 56 years.

Despite constant interruption with why she wasn't prepared to prescribe T3 (to be fair it may have been for the benefit of the student in the room), I eventually got through my story & she seemed to soften.... But she will need to see my TSH at least back up to 0.1... and suggested an initial cut in my levo dose. She wanted NHS bloods to be done in about 6 to 8 weeks time, but with sample taken 2 to 4 hours post liothyronine dose....

My position just prior to last appointment:

medichecks results - taken first thing in the morning before meds at 6am:

T4 16.2 (12 to 22)

T3 6.1 (3.1 to 6.8)

TSH 0.022 (0.27 to 4.2)

I was taking

75mcg T4 once in the morning &

17.5mcg T3 split into 4 doses 5 hrs apart (5mcg, 5mcg, 5mcg, 2.5mcg)

This week, just five weeks after the suggested levo cut (leaving T3 dose unchanged) I checked my bloods using medichecks to see how things were progressing - levo was cut from 75mcg to 66.7mcg (rolling 3 days dosing 75mcg, 75mcg, 50 mcg) - sample taken as endo will want 4 hrs post T3 dose at 10am:

T4 15.6 (12 to 22)

T3 6.9 (3.1 to 6.8)

TSH 0.022 (0.27 to 4.2)

My T3 result is now above range, which is not surprising given sample timing, but no doubt endo will not like a result like that...

What did surprise me is the TSH result being unchanged. A previous comparable levo dose drop had taken my TSH from 0.011 to up to 0.022, so I had expected it to rise. A quick google tells me that TSH results can vary depending on sample timing and whether you have eaten or not, with 10am results generally expected to be lower than early morning results before food.

So, for both TSH & T3 results the NHS sample timing my endo has requested will work against me 🤔

How best can I engineer the required minimum result of 0.1 TSH ?

I could certainly drop my levo further (as endo had initially suggested a bigger drop) to 62.5mcg (alternate days 75mcg, 50mcg).

I am wondering how much impact my T3 dose has on my TSH result and whether I will definitely need to drop that too? Or maybe just evenly out the total dose into the 4 doses. Can anyone give my a rule of thumb?

What are your thoughts on the endo's sample timing request....?

Thanks all

[greygoose]

Your endo is either very ignorant or setting you up to fail. On a decent dose of T3 - one that will make you well - your TSH is going to be low because that's what T3 does: it lowers TSH. It has far more effect on TSH than T4. So, you could keep reducing and reducing and reducing until you end up ill, and your TSH might never rise above the magic number. And they are either incapable of understanding that, or just don't want to understand. They just don't want to prescribe T3, it scares the life out of them.

They're also terrified of a low TSH. They have no idea what it is or what it does but... it's a hormone, isn't it! And that's terrifying enough in itself. And in med school it was dinned into them that the sacred TSH must not on any account fall below a certain number or dire things will happen. And it's just not true. The TSH is suppressed because the pituitary considers - rightly - that you don't need it anymore and stops producing it. All perfectly logical. But I've always noticed that doctors have very little in the way of logical thinking.

As for her timing for the test, there again, either ignorant or setting you up to fail. If you think about it logically, obviously there's going to be more in your blood four hours after taking a dose than there is 12 hours after a dose, yet they tell us it doesn't make any difference. They must think we're daft! But that allows them to say oh, your FT3 is much too high, we have to slash the dose!Or even take you off it all together. They have so many tricks like that up their sleeves.

So, what do you do about it? Lie? Tell her you only left four hours when in fact you left 8 - 12. She can't prove it. If if lying bothers you, just tell yourself that they lie to us all the time so why shouldn't we lie to them? Being honest doesn't always do you any favours.

[muppetme in reply to greygoose]

😅 I am so glad you said that.... you've confirmed what I was thinking 'setting me up to fail'.

[greygoose in reply to muppetme]

You're welcome.

[TiggerMe Ambassador in reply to greygoose]

Hey! This is my Endo you are talking about here!! 🤨

You have summed her up a treat and obviously my attempt at educating her has failed miserably 😕

Top advice GG 👏

[greygoose in reply to TiggerMe]

Sad isn't it. What a waste of tax-payers money!

[TiggerMe Ambassador in reply to greygoose]

and our lives

[greygoose in reply to TiggerMe]

Indeed!

[muppetme in reply to greygoose]

I plan to go back into battle... this war has just begun 🫡

Thanks to you both for reminding me what makes sense.

[greygoose in reply to muppetme]

You're welcome.

[ThyroidieGriaffe in reply to greygoose]

I personally would manipulate your results or lie. This endo looks like they don't understand the thyroid / pituitary axis. I deliberately drop my levo to get it just in range and my TSH comes up. I also sometimes slightly drop my T3 for a couple of weeks. It's a nuisance but worth it to get the annual test done and be left alone by the NHS.

[muppetme in reply to ThyroidieGriaffe]

What kind of numbers are you managing to manipulate... where is your TSH happy place, & what level of drop in meds gets you to a TSH that the NHS tolerates? Do you find it easy to get back to stability after your annual review is done?

It's really quite sad that we are having to discuss such things

[ThyroidieGriaffe in reply to muppetme]

Hi I get TSH to about 1 and T4 in range. Then I ignore TSH and I look at T3 and then T4 and how I am. For me decreasing T4 and a bit of T3 works to get TSH up. I can manage it for the few weeks I need to. It's all personal so what works for me may not for others. But faced with an NHS who treat to TSH and on T3 I do all I can to avoid the GP and NHS system.

[SlowDragon Administrator]

Free T4 (fT4) 16.2 pmol/L (12 - 22) 

Ft4 only 42.0% through range

Free T3 (fT3) 6.1 pmol/L (3.1 - 6.8) 

Ft3 a bit high at 81.1% through range

75mcg T4 once in the morning &

17.5mcg T3 split into 4 doses 5 hrs apart (5mcg, 5mcg, 5mcg, 2.5mcg)

Do you always get same brand Levo

What dose Levo were you taking BEFORE adding T3

What vitamin supplements are you taking

Please add vitamin results

Is you hypothyroidism autoimmune

Are you gluten/dairy free

Looking at these results…..tested correctly

I would suggest INCREASING Levo by 12.5mcg and reducing T3 by 2.5mcg

Retest 6-8 weeks later

Possibly repeating this again after next test

Many, many members find best to be Aiming for BOTH Ft4 and Ft3 at roughly 70% through range

Taking almost ANY dose of T3 will suppress TSH

If you reduced levothyroxine so Ft4 was below range…..TSH would still be very unlikely to move at all ….or possibly a tiny amount…..but you would most likely feel absolutely dire

Why there’s a time lag on TSH changing….and might not ever change if been suppressed long time

healthunlocked.com/thyroidu...

Why TSH is sluggish - mechanism called 'Hysteresis'.

healthunlocked.com/thyroidu....

starts at the end of the first reply from Tattybogle : " To understand why TSH stays suppressed for a long time after an episode of hyperthyroidism/ overmedication, (or ANY T3 use) has finished... "

and is continued in detail much further down in another reply from me : " CONTINUED HYSTERESIS ~ Why TSH remains lower for quite along while following episodes of hyperthyroidism / overmedication .... (or any T3 use) , it is due (at least partly) to a mechanism called 'Hysteresis'.

[Jazzw in reply to SlowDragon]

waveylines - does this reply from SlowDragon help you?

[waveylines in reply to Jazzw]

Thanks Jazzw. I found the paper and have downloaded. I'm going to raise this with my Endo at my next nhs app in July 2025. As I'd like it on my record that my TSH is non responsive. It's a fear of mine that if I was to be too ill to fend for myself dome doctors would take me off my ndt to try to induce a rise in tsh. It wont happen.

Thank u! ❤️

[muppetme in reply to SlowDragon]

Thanks for comprehensive relies

Right up to last prescription had always been Teva Levo, but recent change was to Crescent, and then Almus added to accommodate the endo's dose adjustment.

I don't remember exactly the dose of levo prior to adding T3... I would guess it was between 87.5 & 100. I recall that I never went over the 100, as I was by that time feeling uncomfortably 'hyper' (twitchy, racing pulse...), but still had the debilitating hypo symptoms, a raised TSH & a low T4.

All through 2019 it was a cat & mouse game - my T4 initially went above normal, GP trialled low dose of T4, felt better, TSH back into normal range. Felt bad again, TSH above range, increase dose, felt better, TSH back to normal range. Felt bad again.... & repeat repeat...

I had both types of antibodies which were increasing above normal through 2019, peaked at the end of 2019, and then started to decline to normal. The decline to normal levels had started within a couple of months of starting to take LDN (which I still take - wondering whether I should stop now?).

I tend to think that during 2019 my thyroid was being actively destroyed, hence the ongoing game of catch up, so exactly at what levo dose I started T3 wouldn't now necessarily be relevant.

I was taking a comprehensive array of vitamin supplements until very recently when affordability has become an issue. I have tested some in the past... which ones are important to check again?

Trialled 6 months gluten free - made no difference.

I do consume some dairy - mainly yoghurt & cheese. I substitute cow's milk with nut milks.

Is there a general consensus on the best way to dose T3 - I hadn't realised that single dose works for some people? I had always thought splitting dose to 3/4 times daily would help keep blood T3 levels more stable & avoid peaks/troughs?

Prior to the endo appointment I had felt pretty stable on my meds, but always looking to improve so I take on board your suggestions for total T3/T4 doses - thank you - and comments elsewhere on ratios. It's been about 5 weeks since I dropped my T4 by 10% as requested by endo & I am definitely now feeling negative effects - sleep disturbance, vacant brain, respiration rate lower but deeper, breathless walking up stairs, sticky eyes, energy low, weight creeping up again....

I need to work out my battle plan for the endo - thanks to everyone for their input.

I'll finish with a quote from my lovely endo "you can't take T3 just because you feel a bit tired..."

[FoggyThinker]

I can't add to the good advice you've had above (from the endo, clearly not so much...) just wanted to wave from Gloucestershire too

Can't see me ever getting an NHS diagnosis round here. Maybe we could start a Thyroid support group though!

TiggerMe do we just have the one endo in Gloucs then? Or just one female one? Just in case I ever did get to speak to one...

[TiggerMe Ambassador in reply to FoggyThinker]

Can't discuss here.... I think this 24/7 forum is by far the best support group 😏

[FoggyThinker in reply to TiggerMe]

You're quite right, I don't know what I'd have done without it and have learnt so much here

[arTistapple]

Setting you up to fail. More and more I wonder about this. Whether it’s purposeful towards that end or not, the result is very damaging for the patient. It could just be doctors ingrained disrespect for patients experience. Either way I think it’s downright criminal. It’s premeditated. It’s not negligence. It’s worse.

greygoose says the rest.

[SlowDragon Administrator]

How best can I engineer the required minimum result of 0.1 TSH ?

You may not be able to when taking T3. Many, many members find TSH becomes suppressed on almost any dose of T3

I am wondering how much impact my T3 dose has on my TSH result and whether I will definitely need to drop that too? Or maybe just evenly out the total dose into the 4 doses.

You might be able to improve TSH if you increase Levo a bit and experiment with slowly reducing T3 a little

Reducing T3 by 2.5mcg ….then wait 8-10 weeks before retesting

Some members do well on 3 x 2.5mcg …..but TSH still likely suppressed or very low

[GlowCoach Administrator]

If you want to request feedback by personal message then its best not to ask on a thread. Instead do start a new post.

[Catseyes235]

hello …I’ve just had knee replacement so concentration flaky but if you care to check out my past posts many concern being thought to be overtreated with T4 due to very low TSH. (Which has been low, way under 1.00 over 20 years ) Good luck !

[serenfach]

Does she ask a diabetic to suck a boiled sweet before the test? Does she ask a person with a broken leg to come back when the leg is not broken?

You may find the following useful - thyroidpatients.ca/2019/03/...

It is a shame logic is not allowed!

[muppetme]

Well, just that 11% drop in my T4 dose took me right back to having intolerable hypo symptoms. And my T4 dropped right to the bottom of the range. As soon as I'd done the blood test for my NHS endo I put my dose back up ! When she had the results he told me by letter to drop my T4 dose a further 25% (total drop of a third from original dose) WITHOUT EVEN ASKING WHAT EFFECT THE INITIAL DROP HAD HAD 🙄

Is it even possible to to have a normal TSH if you're taking T3/T4 and still feel well?

[Tina_Maria]

The thing is, if your TSH has been very low or suppressed for a very long time, it might never be coming up to being 'in range', no matter what you cut out or how much you reduce your meds. However, it will very likely make you quite ill. In addition, as you take T3, this will lower your TSH anyway, so being on T3 and having an 'in range' TSH is probably as common as hen's teeth!

At the end of the day, it will have to be your decision as to what works best for you, especially as the endocrinologist is neither open to your reasoning, not does she really understand how T3 works and that it is nearly impossible to get that TSH higher when you are supplementing with T3.

And one last thing, that sample time she has requested IS setting you up to fail, as the blood draw will be too close to you taking T3 and hence will show you an over-estimated (or worst case scenario over-range) T3 value, which is NOT reflective of your general T3 levels. Just so she can say, 'look you are overmedicated'.

My opinion: I would beat her at her own game! 😉 Good luck.