graves disease and low TSH

[Kitshustle]

I was wondering if anyone has experienced the same thing as I have, I’m a little worried but not sure if it is normal 😊

I was diagnosed with Graves’ disease almost two years ago. My T3 and T4 levels were bought under control with PTU. I was eventually on 300mg daily.

this has now been reduced to 50mg daily and I was very lucky to give birth to my son at Christmas.

My t3 and t4 levels stabilised in August last year, during pregnancy but throughout my pregnancy my TSH was undetectable and I’ve just had more bloods now which show the same..

The consultant said TSH can take a while to stablise once the T3 and T4 are in normal range, but this seems like a long time! (6 months now)

I’m wondering if I should worry about anything, or just go with the flow and not worry about it too much.

many ideas or have any of you experienced the same?

[tattybogle]

Hi Kitshustle, your endo is correct , it can take ages for TSH to come back up properly once it's been very low for a while.. (in fact it may never get back to exactly where it was before ).

It is due to a thing called "Hysteresis" ( means sort of 'lag behind'... nothing to do with hysterical )

it happens party because the pituitary (which makes TSH) can shrink a bit when not being asked to make any TSH .. and it can take it while to grow bigger again and make more TSH.

( and some other reasons which were too complicated for me to remember lol)

So for a long while after a period of hyperthyroidism,, you need to adjust doses based primarily on fT4 and fT3 levels and symptoms and not worry too much about what the TSH says.

just keep an eye on what your fT4 / fT3 are up to .. if they are rising again over time , then pay more attention to TSH, if they are stable and in range and you feel ok , then it's fine to ignore the TSH for now .

Thyroid hormone levels can mess around for several months following a pregnancy anyway .. even without Graves adding to the fun.

So don't worry , just make sure you stay on top of getting your lT4 /T3 checked regularly , and especially if you feel hpyer / or hypo symptoms starting to rear their head

[TSH110 in reply to tattybogle]

hysteria and hysterisis are actually related. This quite an interesting discussion of the two words’ entomology and how they are related via the posterior or behind sense:

amva4newphysics.wordpress.c...

[tattybogle in reply to TSH110]

Interesting .. but i'm much happier that they stay firmly 'unrelated' as far as thyroid usage goes .

i had a strong aversion to reading anything further about hysteresis for most of last year when i thought it might be related to hysterical ... too many yrs of reading Wessely and Pearce ... sets me on edge as soon as anything even remotely related to 'hysterical' gets mentioned ......lol

[TSH110 in reply to tattybogle]

it was a minor point of interest on the minutiae of the evolving language! It just makes me laugh and removes their cover of being scientifically rigorous to rely on nonsense like that to explain health disorders affecting women it’s all greek to me 🤣🤣🤣 didnt they think the heart was where the brain resided? I rest my point.

I wondered if you posted a link to a paper on hysterisis I wanted to send it someone. I thought diogenes had posted it but a search of his posts proved fruitless. Any help with info gratefully received

[tattybogle in reply to TSH110]

yes ... hang about ...

[tattybogle in reply to TSH110]

ere it is :

ncbi.nlm.nih.gov/pmc/articl...

[TSH110 in reply to tattybogle]

ta tat you’re a 🌟

[Kitshustle in reply to tattybogle]

thank you so much, this is very helpful! I recently got my bloods tested and have only spoken to a receptionist so far, she said my T4 level was 23? And they didn’t test my t3.. so weird as that seems well over for t4..

[tattybogle in reply to Kitshustle]

Hi Kitshustle , there are lots of different fT4 ranges and you can only interpret how high '23 ' is when you know the [lab range] used .

Ask receptionist to give you the result AND the [lab range]

It could be [12-22] in which case it's only a tiny little bit high , but nothing to worry about yet

~or it could [11-26] in which case it's not high at all.

~or it could be[ 7-14] in which case it is high.

[Kitshustle in reply to tattybogle]

oh wow, I didn’t realise this either! That makes such a difference and I will ask them the question. Thanks again 😊 x

[Fruitandnutcase]

I would say relax (well as much as a new mum can do) and try not to worry about it. You’ve done really well to have had Graves and a baby boy.

I had Graves some years ago - been in remission since 2013 - and I can remember that it took my body quite a while to get used to being ‘normal’ again rather than hyper.

It took me a very long time to actually get diagnosed - I had felt rubbish for so long that I think that was my body got used to being like that so being not hyper felt quite strange until I got used to it.

I know it’s probably not easy but I would say try and rest whenever you get a chance.

[Kitshustle in reply to Fruitandnutcase]

thank you for providing some reassurance! I will do 😊

[jimh111]

Graves' is caused by TRAb antibodies that mimic TSH thus stimulating the thyroid to over secrete. The thyroid hormones T3 and T4 feedback to the pituitary to reduce TSH secretion. The pituitary also senses TSH and this also reduces TSH secretion (this is called 'paracrine' feedback). Since TRAb mimic TSH these antibodies also contribute to TSH suppression. TRAb tend to hang around for about a year after Graves' is treated with a thyroidectomy. So, in addition to tattybogle comments this is another reason TSH may stay low.

I would try to stay on the lowest dose that makes you well as this will give you the best chance of recovering a normal TSH.

[NIKEGIRL in reply to jimh111]

hi Jimh111

Firstly sorry to jump in on someone else’s post. I have had trab all the way through my Graves’ disease and my trab was high up to my thyroidectomy in December 2022. Would not be fair to say then that my TSH may remain suppressed for a year or more post thyroidectomy given the trab was high right up until surgery and despite thyroidectomy trab is still there

[jimh111 in reply to NIKEGIRL]

TSH can remain low for quite some time regardless of TRAb levels, the antibodies just make it worse.

[NIKEGIRL in reply to jimh111]

thanks jimh111

[Kitshustle in reply to jimh111]

thank you, that’s really helpful to know. Will do!

[PurpleNails Administrator]

I had mild hyper for long time & even though I’ve now had normal FT4 & FT3 levels for over 4 years (taking carbimazole) my TSH is still <0.01.  

My specialist was aiming to make the TSH rise into range, but after having my levels borderline low for several months it only rose to 0.30 - still below range so it was agreed I could lessen the anti thyroid and allows to rise so I felt well.  

The longer the TSH is low the longer it’s likely to stay low.  

There’s no antibodies in my case, a nodule caused elevated levels just enough to suppress TSH. Aim to keep FT4 & FT3 in range and give it some time to respond.  

[Kitshustle in reply to PurpleNails]

thanks massively helpful too, thank you!

[pennyannie]

Hello Kitshustle and welcome to the forum :

Congratulations on the arrival of a new family member and I would just go with the flow and enjoy this very special time.

Your TSH may never recover - mine never has and I had RAI thyroid ablation way back in 2005.

Once a Graves patient, always a Graves patient and the TSH the least important reading.

Just ensure your Free T3 and FreeT4 readings are monitored though totally understand that in primary care the skillset is generally reduced to a computer programmed to believe everybody has a perfectly functioning thyroid and that Graves doesn't exist, and the TSH the only reading necessary.

Graves is a poorly understood and badly treated autoimmune disease and you might like to read around the subject on Elaine Moore's website - elaine-moore.com

if you have a minute or 3 hours for yourself in the next 10 + years !!

[humanbean in reply to pennyannie]

pennyannie

Did your persistent low TSH cause you enormous problems with doctors for years?

I can't remember if you treat your own thyroid hormone levels now or if doctors are still involved. If they see your low TSH do they bang on about you being "over-medicated?"

[pennyannie in reply to humanbean]

Well it seems looking back I was allowed a low suppressed TSH of 0.01 until I hit 65 in 2012 and then, I presume, the reason for my dose reduction to 100 mcg ( from 125mcg ) and I went into this ever decreasing circle of wellness as detailed on my profile page - sorry I have no wish to relive the next few years here again :

I fell into here and Dr Mercola in around 2015/16 researching low ferritin and was blown away by what I was reading - asked for a TSH. T3 and T4 blood test and it was as though a WW broke out - I refused to leave the doctor's room without this simple request being actioned and eventually the doctor phoned the lab who said they would do it but I would have to pay for it myself - which I did,

The results showed very poor conversion - T3 at 4 - just 25% through - T4 100 % and so I then I requested a referral to endocrinology - my first appointment since hospital discharge after RAI back in 2007 ( RAI was 2005 - but I had no permanent address so stayed under the hospital until settled ) and had a discharge letter stating my T3 was 5.80 - then 60% through its range.

The endo I eventually saw was a diabetes specialist and explained that with a TSH at 0.01 I was overmedicated and needed a dose reduction and was not interested in my actual T3 and T4 readings and reciting word for word my own doctors speech.

I asked for a trial of T3 and dismissed as my TSH was too low - and I actually offered to drop my T4 further and make myself more unwell if she would guarantee a trial of T3 in 6 months time whether my TSH moved into range or not - and she said nothing.

It was now around 2018 and I decided to jump ship and self medicate as this was simply exacerbating my symptoms further and haven't looked back and have been taking NDT for around 5 years.

The RAI has taken it's toll on my body and read there is around a 25 year window for potential cancers - I still can't taste anything and I've managed not to loose any further teeth due to having had no saliva for almost 2 years 2015/17 :

It was only my NHS dentist who seemed at all concerned - and he thought I was post chemo from head/neck cancer - after several extractions and a NHS part denture that couldn't stay put if I wanted to talk - he kindly fixed a 4 tooth bridge in my bottom from jaw and waived his private fee as he was embarrassed I couldn't get any help at the hospital.

Sorry I've ended up going off on one again !!

[humanbean in reply to pennyannie]

Thank you for your story. Personally I think medical care is getting worse globally, but the UK is ahead of the pack in making it worse. If I put my tin foil hat on I wonder if it has any relationship to the Great Reset. Bill Gates has allegedly been quoted as saying the perfect global population would be 500 million people. I don't know if he has specified how he wants to eliminate 7.5 billion people.

[pennyannie in reply to humanbean]

Ditto :

[Kitshustle in reply to pennyannie]

thanks pennyannie thsts so helpful to know