Thyroid status after 30+ years on levo

[wanttobenormalnow]

Question: Can I assume if I have been on T4 for 32 years (had Graves and was given a blocker and then synthroid and then the blocker again(forgot what it was called now) until my numbers were within range) would I even have any thyroid that is working left? I thought when you took the synthetic T4, you basically make your thyroid inactive. I ask because I read studies and some are on people with no thyroid and I wonder how similar that is to someone with one that was destroyed by taking the blocker for a year or two (again can't recall) and of course now after 32 years, I assume there isn't much left of my thyroid. Just trying to understand if there is a big difference. I guess trying to understand what shape if any, my thyroid would be in after what it's gone through. Thanks to anyone that has any idea of what I am trying to understand!

[PurpleNails Administrator]

From previous post you were prescribe Tapazole which temporarily reduces thyroid function when levels are expected to be high.  The effect it temporary and doesn’t destroy the thyroid.  The damage is from autoimmune damage. 

It’s not clear if you had Graves antibodies tested at time  but you took the antithyroid for quite a while,  did you take Tapazole & sythroid at same time? This is called block & replace.  This “hides” what the natural levels are doing - so if your levels were hypo you wouldn’t be aware - the replacement would - replace levels. 

Synthetic T4 can reduce thyroid output, ie it replaces levels not top up the levels - in theory your TSH should feedback at the “right level”.  

Most feel well with TSH around 1 but many end up with lower or suppressed TSH.  

No matter the cause of the thyroid disfunction the approach is the same.  Most feel well if FT4 & FT3 are in top part of range.  TSH can be unreliable. What are your thyroid results? Have you tested folate, ferritin, B12 & vitamin D? 

[wanttobenormalnow in reply to PurpleNails]

Vit D25-Hydroxy 32.0 ng/mL (30.0-100.00 ng/mL)

B12 - True Cobalamine 761 pg/mL (232-1,245 pg/mL)

Ferritin 126 ng/mL ( 15-150 ng/mL)

Folate 12.6 ng/m: (>3.0 ng/mL)

FT3 2.6 pg/mL (2.0-4.4 pg/mL)

FT4(EIA) 1.53 ng/dL (.82 - 1.77 ng/dL)

TSH 0.103uiU/mL (.450-45000 uiU/mL)

[tattybogle]

the effect of the antithyroid drugs ( 'blocker' ) is to reduce/ control how much T4/ T3 the thyroid CAN produce at the time you are taking it , the effect is dose dependant . and once you stop taking any at all ,there is no effect at all , and the thyroid goes back to producing however much T4/T3 it wants to do .

Think of antithyroid drugs like putting the brakes on on your car when it's going down hill a bit too fast ~ push the pedal lightly , the car slows down ~ push it hard, the car stops totally , take your foot off the brake the car rolls along again.

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Taking Levothyroxine also slows down how much T4/T3 the thyroid is ASKED to produce at the time you are taking it , because the pituitary senses the added T4 , it thinks "oh, the thyroid is making enough now , i'll stop asking it to make any more "

TSH (Thyroid Stimulating Hormone) is the massage from the pituitary to the thyroid to ask it to make more / or less T4 /T3..(when the pituitary thinks there is enough T4/T3 in the body ,, it lowers the TSH level , when it thinks there is not enough it raises the TSH level)

However the pituitary is a bit dumb ,, it doesn't realise the extra T4 came from a tablet not your thyroid ... so when you take T4 from Levothyroxine, the pituitary lowers the TSH and stops asking your thyroid to make muchT4/T3.

This effect is also temporary and dose dependant .. if you stop taking any T4 from Levo ,, the TSH will rise, and the thyroid will be 'asked' to make more T4/ T3 again .

Whether it can actually respond to this request by making 'enough' T4/T3, has nothing much to do with how long you have been taking Levo for . It has to do with how damaged the thyroid is as a result of autoimmune disease. The damage is not a result of taking the levo.

eg In theory, if you gave Levo to a person who didn't need it with no autoimmune disease and a healthy undamaged thyroid , then their thyroid will( eventually) return to making 'enough' T4/T3 once they stop taking the Levo .. it would probably take it several months to get back on track though ,as the pituitary may have shrink a bit ,and the thyroid may have shrunk a bit, due to lack of stimulation,, but they would both enlarge again one in regular use.

obviously in reality it's a massively complex arrangement of fine tuning/ regulation ,, and if you fiddle with the knobs by giving them levo unnecessarily for many years their pituitary/ thyroid response settings may not ever go back to the 'exact' same setting as they were at before.

But taking Levo does not destroy the thyroid gland or stop it having the ability to make T4 /T3 again in future . and neither does taking antithyroid drugs ('blocker').

An Ultrsound scan is the easiest way to see what amount of thyroid tissue you have left and although it can't see the 'functioning' of it , it can see any areas of autoimmune damage if they are bad enough to be visible .

NHS won't give you an ultrasound scan just to satisfy curiosity about size or damage though, but there are places where you can get one done privately for about £150 ... slowdragon has a link to who does it.. might be in london ?... so 'not a cheap day out'

[wanttobenormalnow in reply to tattybogle]

So when the pituitary sees the levo-T4 in the blood, it sends the message to stop making t4 by lowering the TSH, does it have the ability to measure if it's enough T4 before it lowers the TSH? Otherwise, you may not have enough T4 dose, but your thyroid won't know to make more to help out, because the TSH is so low.?

I ask this, becuse my TSH is always below range, but my T3 is nowhere near even the middle range on my tests, so I am just curious on how this works.

Thank you so much for the very detailed response! I am amazed that I couldn't even get this much out of my endo! What a ridiculous medical world and why I love this site. My endo did say at one time that we could do an ultrasound, but that there isn't much left by now. He did do a physical exam of my thyroid area. I actually had him test for antibodies as I was curious if I had any of graves antibodies so he only tested TSI <.10iu/L (0.00-.55iu/L).

[tattybogle in reply to wanttobenormalnow]

yes, the pituitary can tell if it thinks you've got 'enough thyroid hormone ' ...

and no, the pituitary doesn't lower your TSH level until it thinks you have 'enough thyroid hormone' ,

It has receptors that respond to the levels of T4. and T3 in your blood , so it ought to know

but therein lies the problem ....

...... the pituitary itself might well have enough ..... but once you have no thyroid and are taking just T4, some other bits of you might not have enough . and unfortunately nature didn't give them a say in adjusting the TSH .

When we take levo and have no functional thyroid gland left to make any 'ready made T3' , we end up with a higher ratio of T4 to T3 than we had when our thyroid was making T4 and T3 for us .

Our pituitary gets a bit confused by this new situation ,, it see's the higher amount of T4 and thinks it's time to turn down the TSH level ,, but it hasn't realised some other bits of you are not getting the same amount of T3 they used to . So you feel rubbish unless you take more T4 to get more T3 out of it , or add some T3 from a tablet .... but the doctor says no you can't have more because your TSH is too low already .

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You endo sounds (fairly) accommodating if he tested TSI for you .. try and get him to read this recent paper so he will understand what we are on about.

frontiersin.org/articles/10... Front. Endocrinol., 09 June 2022 Volume 13 - 2022 | doi.org/10.3389/fendo.2022....

Principles of Endocrine Regulation: Reconciling Tensions Between Robustness in Performance and Adaptation to Change

Rudolf Hoermann1*, Mark J. Pekker2, John E. M. Midgley3, Rolf Larisch1 and Johannes W. Dietrich4,5,6

This post is discussing current interest from the world of endocrinology in this latest understanding of why the pituitary's 'opinion' about 'how much levothyroxine is enough' can sometimes be wrong . healthunlocked.com/thyroidu...

and this is a Q and A about it from one of the authors . healthunlocked.com/thyroidu...

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i've got brainfade now .. so this may be full of typo's and the links may not work .. i'll tidy it up in the morning . goodnight from me x

[wanttobenormalnow in reply to tattybogle]

Thanks so much for your time and attention to the details!

[pennyannie]

Hey there again :

Just read up on a conversation we had some 3 years ago !!

Graves antibodies can wax and wane throughout your life - and can burn themselves out - given time :

Hashimoto's antibodies - I believe - die once the thyroid is fully disabled.

Either way after 30 odd years with a ill functioning thyroid and being on T4 thyroid hormone replacement I would think your own thyroid function limited and if being dosed and monitored on a TSH reading you will certainly be undermedicated.

Graves antibodies sit on TSH receptor sites giving the appearance of overmedication when in fact the opposite is probably more true and you must be dosed and monitored on your Free t3 and Free T4 readings.

No thyroid hormone works well until ferritin, folate, B12 and vitamin D are up and maintained at optimal levels - so these 4 need to be at the very least 50% through their ranges and for folate I aim for around 20 :

Your T3 is very low at just 6 points into a range of 24 so around 25% through it's range :

whilst your T4 is 71 points into a range of 95 and around 75% through it's range :

Please check my maths today - I'm a bit all over the place !!

We generally feel at our best when on T4 monotherapy when our T4 is up in the top quadrant of it's range as this should convert to a decent level of T3 running at around 60/70% through it's range.

The body runs on the active hormone which is T3 and it is low T3 that causes all the symptoms of hypothyroidism.

Since you are in the States you do have more treatment options than here in the UK.

You may well feel better taking a little T3 - Liothyronine alongside your T4 or switch to Natural Desiccated Thyroid which was the original treatment for hypothyroidism and used successfully for over 100 years and derived from pig thyroids dried and ground down into tablets referred to as grains.

Each grain of NDT holds a unique balance of T3 and T4 at a ratio of around 1/4 - T3/T4 and suits many thousands of people who are hypothyroid.

I now self medicate and take NDT having had RAI thyroid ablation in 2005 for Graves and I drank the toxic substance that you declined and am now 6 years into taking NDT and much improved on this treatment option.

[wanttobenormalnow in reply to pennyannie]

So I definitely need to increase my D and Folate then. I have had terrible tinnitus since around 2019 and I am wondering if that was due to the decrease in my dose, as my then Dr. moved me down to 75 mcg from 88mcg due to TSH being under range. I went practically an entire year like that and Tinnitus started that year (will have to research on the timing of that) and haven't been able to get rid of it since. Also have a hard time increasing my T4 or maybe I am just paranoid, I honestly can't tell as the symptoms can be so similar on both ends of the spectrum. Having said that, clearly my T3 is low which explains my weight gain (also during that year gained another 10 pounds) and feeling really badly. That year my mother's health was poor and she passed away, so all the stress didn't help with the low amount of T4 I was taking. Brain Fog, depression...oh and I noticed my teeth/gums hurt and joints hurt and when I take a higher dose ( I have some 100s stashed away...shhhhh) this miraculously disappears...now I am wondering if this is all from too low a dose. I will just ramble on so I better stop. I used to be able to summarize very well and stay on point, but now a days I just go from one thing to the next and forget what the heck I was even supposed to be focused on! ugh..I am just so frustrated... Thank you so much for replying, I greatly appreciate your time and thoughts.

[pennyannie in reply to wanttobenormalnow]

You might like to ask a new question on Tinnitus ot just put it in the search engine top right - as there have been several posts on this recently and yes - I think it's another symptom of undermedication.

Before I was optimally medicated I thought I was dealing with dementia - as I couldn't remember much and what i did didn't seem to make much sense - I was reading Elaine Moore's first book - Graves Disease A Practical Guide and crying my eyes out :

Anyway that's now behind me as I eventually got so cross and angry with the non -intervention of my doctor that I decided to self medicate and once I added a little T3 my brain turned on again - it was literally " that light bulb moment " you hear and read about.

Take good care - there s no quick fix but it's definitely worth building up your core strength vitamins and minerals to be as well as you can be and then maybe you have the opportunity to revisit and try an alternative treatment option.