I'm trying to understand why I've not recovered since my full thyroidectomy in 2019, I was like many of us thrust on T4 🙄 after finding out it contains lactose (lactose intolerant and have colitis) I got on lactose free T4 but still had the same problem, (mannitol) i got on T3 but still having the same problem.. Gastrointestinal, diarrhea, cramps, bloating feeling sick and inflammation of bowles. 😢
I've just read a paper on thyroid hormone resistance, it tells the story of a 66 year old woman who was referd for thyroid evaluation for a disfunctional thyroid her symptoms after were memory loss, and intermittent gastrointestinal problems, diarrhea with intermittent constipation attributed to IBS.
In 1988 she had been diagnosed with a thyroid condition she had a goiter and was treated with radioactive treatment.
For nearly 30 years she was seen by multiple physicians who continually modified her thyroid drug but had been unable to normalize her thyroid hormone levels, during this time she was given different doses of thyroid replacement her TSH remained elevated a resonance imagine of her head showed a possible right sided pritruitry microadenoma.
A subsequent ultrasound scan showed a normal thyroid gland with some nonspecific nodules PCR amplification of the THRB gene exons showed a heterozygous missense mutation, the recommendation was to resume thyroid hormone replacement with liothyronine 10mg twice a day along with levothyroxin 75mg, unfortunately she was lost to follow up with the endo (not surprising 🙄).
This was found to be a common germline mutation located at THRB.. The diagnosis of ISTH required a degree of suspicion and we therefore believe it is important for the general practitioner to be able to recognise the syndrome to avoid delays in diagnosis and unnecessary invasive treatments such as surgery and radioactive treatment of the thyroid.
I must admit this paper is way over my head but I understand that this lady was having trouble with thyroid medication, my symptoms are practically the same as hers the gastrointestinal problems diarrhea IBS obviously she seems to have this gene mutation, and mine could just be because I can't stomach the thyroid meds, but is that not in it's self a form of resistance?
I know if I eat cheese or dairy /cream ect I will become very unwell in the gastro department 🤢 so that's resistance to cheese /dairy🤷♀️.
I'm sick of my gp fiddling about with my meds chopping and changing them hoping for a different result 😠 his about to do it again as he wants my T3 reviewed, and as I posted a few days ago he as stopped my 25mg and only prescribed one box of 10mg🤯.. I made the mistake of taking the wrong dose🤦♀️ and I've tried explaining this to the receptionist, can she not inform the gp of this get my 25g reinstalled NO!! I've to wait for the phone appointment on may 23rd, when I will have no meds left😠.. Rang today no appointments 🙄 I'll try tomorrow, but this paper as got me thinking 🧠 I'm sure tattyboogle or helvella will know way more than I do about this paper, be interested to know your thoughts ladies ❤️
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birkie
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The key point to understand from this case study is that her TSH remained raised despite adjusting her levo doses.. and despite having over range fT4 and fT3 , and so the inappropriately HIGH TSH is how they knew to suspect thyroid hormone resistance. (Impaired Sensitivity to Thyroid Hormone)
Her pituitary didn't respond to her high T4 /T3 levels appropriately by lowering the TSH output .. and so they were looking for reasons why it didn't respond.
However your TSH DOES go lower in response to your thyroid hormone replacement (as expected) .... your pituitary is not resistant to thyroid hormone .
Would you have thyroid resistance if your TSH remained low or deficient despite your thyroid meds being changed and your hormones going from almost rock bottom (below range) to top or over the range of T4?
that does not sound like any form of RTH iv'e heard of .
there are several (accepted) genetic varieties of Resistance to Thyroid Hormones , it's complicated and i don't understand them very well, but try this for a start : yourhormones.info/endocrine....
(There is also aquired RTH ( not genetic ), and also some people who would say they have "a form of RTH ",and who believe this explains why they need to take exceptionally high doses of T3 that would make others feel overmedicated , but that is not an accepted diagnosis)
Basically RTH (in its accepted 'genetic' form anyway) means the thyroid hormone is not being able to act very effectively on the cells, (or on some of the cells) .. and therefore the TSH remains high despite decent thyroid hormone levels.
By definition, if your TSH is low AS A RESULT OF taking thyroid hormones then your thyroid hormone IS acting on your cells . because it has acted on the cells in your pituitary, and this has then lowered your TSH .
TSH remaining low is an altogether different subject to RTH.
When TSH is too low (at diagnosis) despite a low T4 / T3 ,then that indicates Central/ Secondary hypothyroidism ( a pituitary or hypothalamus problem) ... not a form of RTH.
When TSH WAS high at diagnosis (primary hypo), but THEN it remains low while they are taking T3/ T4 .. it's low BECAUSE they are taking T3/ T4 ,... so again , not a form of RTH.
(All i know is that trying to understand different forms of RTH usually gives me a headache , lol )
Star13 , Just found one that seems better than the first link i gave,.... if you are up for giving yourself a headache it's here ( tagging DippyDame in case you've not come across this one, it's from 2021 and has some quite interesting stuff in ) : frontiersin.org/articles/10...Resistance to Thyroid Hormone Beta: A Focused Review
Theodora Pappa1 and Samuel Refetoff2*
1Division of Endocrinology, Diabetes and Hypertension, Brigham and Women’s Hospital, Boston, MA, United States
2Departments of Medicine, Pediatrics and Committee on Genetics, The University of Chicago, Chicago, IL, United States
By definition, if your TSH is low AS A RESULT OF taking thyroid hormones then your thyroid hormone IS acting on your cells . because it has acted on the cells in your pituitary, and this has then lowered your TSH .
But....we also learn from diogenes et el that TSH is not a reliable marker
Peripheral tissue includes more than the pituitary...so can we say that all cells are receiving T3 because the pituitary is.
can i clarify .... probably not .. already gave myself half a headache trying to write that bit .. lol
So ....yes , just because the pituitary responds to T4/T3 by suppressing /lowering a high TSH, that does not necessarily mean all other tissues in the body are happy with that amount of T4/T3 .
but it's difficult trying to write sentences that include all the variables, without the whole thing becoming too confusing .
In the context of a reply on a post about a case study of a known/ accepted form of genetic RTH , i was relating my answer to those accepted forms of RTH. and therefore to high TSH .... adding anything about "low TSH when other tissues don't have enough" , or trying to explain the other forms of RTH that are not an accepted diagnosis was "a sentence too far" ..... i can't think about more than 3 things at once while trying to remember how to spell aquired.... ( not like that, i suspect)
I have a form of RTH, I don't know which type, but it means that my system has difficulty in getting enough T3 from the serum into the nuclei of the cells where it attaches to T3 receptors and becomes active.
T3 in the serum remains inactive until it reaches the T3 receptors....so if someone has a form of RTH their FT3 may appear adequate... but adequate amounts of the hormone may not reach the nuclei of the cells. The result being that the person suffers hypothyroid symptoms.
This has been referred to as cellular rather than glandular hypothyroidism
In mycase I need a supraphysiological dose of T3 in order to provide " a push" against the cell walls to allow an adequate amount of the dose to enter the cells. The rest is eventually metabolised and excreted
The greater the resistance the more T3 will be need to "push" enough into the cells.
The dose required is well above any level that would be safe for someone without RTH. I currently take 125mcg T3-only. I check daily for signs of overmedication and my heart and bones are fine
Clearly I'm not a medic and can only refer to my own experiences in fairly basic terms but hopefully you get the gist birkie .
I have read the paper you mention and I'd be very surprised if your problem lies with the beta receptor....it seems more likely that you are on the wrong T4/T3 combination and doses.
Do you have any recent labs from a full thyroid test that were taken after at least 6 weeks on a steady dose of replacement hormone. It sounds as if, with all the changes, your dose has been erratic and so unsettling for your system
You mustn't be without meds....ask your surgery for an emergency appointment and then ask for a full thyroid test.....or at least TSH, FT4 and FT3 minimum.
I can't claim to be an expert but this is about the experience I've had.....the rest is in my bio.
My last thyroid bloods done on 31st jan 2023.. on T3 Roma 20mg were:
T3.....3.70..(range... 3.10..6.80)
TSH...6.25..(range..0.30..4.50)
T4...2.90....(range.. 11.00..22.00)
Needed to trilateral up to 25mg
These are the tests done on may 2nd 2023.. 25mg T3 roma (the ones the gp has had a knee jerk reaction to)
T3.. 3..
TSH...4.42
T4...2.70
The last 10 or 14 days I didn't realise I'd been taking 10mg instead of 25mg.. I actually had no 20s left but the boxes look very similar ,so I'd taken 5mg at 8am and 5mg at 6.30pm..(10mg) when I actually take 20mg /5mg🤦♀️ so on this result the gp has stopped the 25mg..(20mg/5mg) so hence the latest bloods🤦♀️ I'm surprised he could do this and leave me on 10mg one box containing 28😳.
However I'm taking 20mg..(10.10) still short of 5mg though, tried to get a message to the gp with the mix up, but it's impossible as I have to ring between 8am and 9am and cross my fingers I can see or speak to a gp... So far nothing😠 honesty it's so annoying.
But still got the gastro problems even on the roma I'm grasping at every straw to find out why I keep having gastro problems with the thyroid meds, I've tried everything T4, T4 liquid, lactose free,T3 lactose free teva.. I'm even taking the powder out of the roma incase it's the capsules causing the problem, but no been on today with diarrhea and yesterday to 🤢 that's why I looked up resistance to thyroid hormones, thought I maby that was my problem, but that's been cleared up... Thanks all❤️❤️
Really don't want to go back on teva I was worse gastro wise on them, although Roma are still giving me some gastro problems there not as bad as teva,.
Because Roma were a new drug to me I started low on 20mg just to see if I got the gastro problems, weren't to bad on 20mg but since going up to 25mg I've been getting the diarrhea /cramps more🤷♀️ but have persisted, I'm at this very moment on hold with my surgery, I'm 3 in the queue 🙄 I really need to speak to a gp about the mix up of my thyroid medication.
But still how could he just reduced my meds to 10mg per day... 😳😳😳 Makes no sense 🤷♀️
Yeah slowdragon I agree that 20mg in one full go isn't what my body likes, but the pharmacy who I'm sure are gas lighting me told me roman don't do 10s😠 only 20s 5s.Then I go to get my next script of 20s 5s Roma ... And it's 10s one box roma🤷♀️ obviously it's what the gp as sent down.. But why only 10s one box? ...if I don't get sorted by the 23rd I'm gona go more into hypo😢.. Also I told the gp receptionist the pharmacy need to order my T3 meds in, and I was told it can take up to a fortnight, yet on the e mail from my gp receptionist who spoke to my pharmacy she told me the pharmacy can get your meds in within 1 to 2 days 🙄.. Who's zooming who here?? Im just so sick of this now... If they could just reinstall my 25mg I can start over again 🤦♀️ it just seems to hard for them to understand slowdragon 😢 not looking forward to discussing this sinario with the prescription manager... If they ever call me back 🤷♀️
Actually another point slowdragon.. I was on 20mg my safe starter dose as I'd never been on Roma, i knew through my bloods after 9wks I needed to increase (TSH 6.25) T3.. (3.70)It was a fight of over 3 weeks to get the 5s..i told the receptionist I needed an increase from 20mg to 25mg as my last bloods required it.
She promptly asked who said I could go up to 25mg who said I required an increase? Me I said as my last bloods are as follows, she then said "you can't have an increase of meds without a gp signing it off... 😠😠😠 God give me strength 🙏 yes I know.. That's why I'm asking you to inform a gp, when he sees these results he should increase my meds🤷♀️... Her... Ho you'll just have to ring up tomorrow to get an appointment 😠 it took me over 3 weeks then I managed to get an emergency appointment.. And I got the 5s.....think next week I'll try climbing everest, be flipping easier than obtaining my thyroid medication 😂
You look under medicated to me. Can you get the t3 elsewhere to add to your doc’s? And just a thought - but might your intolerances go once once your thyroid levels are higher..? And could you then try any old cheap t3 etc? (Is it worth trying that even now - you’re not on that high a dose.)
Hi JAmanda❤️I have colitis and I'm lactose intolorent, the problem is tralating up the more the thyroid drug gets in my system the worse the gastro symptoms become, I'm sure the meds are irritating my colitis.
Had a bad bout of diarrhea and cramping for the last few days, I have inflammation of my intestines, and I have bad inflammatory pain to, I look pregnant 😣 it seems to be more intermittent with the Roma but I was constantly bad on T4.. And no better on teva🤦♀️ the good news is I'm having a colonoscopy on June 2nd so if the inflammation persists it might show up on the procedure like it did when I took anti thyroid medication, my whole colon became inflamed, the specialist said my whole colon looked like balloon that had been pinched along every length 😳 he'd never see it before and even put it in the report,.
As soon as I got off the anti thyroid medication it cleared up🤷♀️
sorry to hear - it was just that my belly got a whole lot better once I was taking sufficient thyroid meds. But we’re all different of course - I’ve now got asthma to add into the mix and I am allergic to ventolin!
It's just one thing after another isn't it, I was hospitalised with colitis passing blood from both ends.It's in my records and the lactose intolerance, but when I'm prescribed thyroid for the first time after full thyroidectomy they give me T4 with lactose in them😠 after 4 days I knew something was off, but like you said the gp just said the more you take the less side effects you will see... NO I became worse then my bloods went downhill and continued to do so until he eventually sent them to an endo who said "she's looks like she has an absorbtion issue put her on T3".. T3 that contained lactose🤦♀️ you just can't make it up can you 😂 anyway I eventually got on lactose free but then they contained mannitol same effect on my stomach /bowles 😢 now on Roma but still having problems but more intermittently that's why I've stuck with the Roma because honestly I don't know what else I can try🤷♀️
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