Monday I have an appointment with neuro gastro and they will harp on about tsh
Can someone pleeese explain
(Before starting T3 my tsh was 0.02 but my T3 was 2.1! (4 to 6.8) t4 19 (12 to 22)
I was on 100mcg thyroxine then )
It’s obviously not
Converting but my thyroxine has increased to 125mcg and 25mcg T3
I need advice what to say to neuro gadteo
Monday is a top neuro gastro and IM super nervous the doctor will say tsh is too low blah blah as they don’t have a clue. Then write to my doctors . They have been useless they told Me 3 years ago just to live with it when I was crying I could not digest or eat properly .
No one ever thought to test my T3 .
They also didn’t test my rectal prolapse which is so bad from years of problems as obviously T3 issues.
Can someone tell me what I can say to the doctor so I can be knowledgeable rather than brushed to the side as normal
It’s giving me huge anxiety
Also last few days things are worse . Tiredness is unbearable heaviness and can’t even walk my legs are weighted.
anyhoo I’m super nervous and any advice welcomed
Thank you 🙏
Sorry if I am not making sense I’m worried
Thank you
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Chouchou1234
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i agree... if they go to the subject of 'excess thyroid hormones' , then bring the conversation straight back to the effect of thyroid hormones ON THE GUT(motility / speed of peristalsis / constipation vs diarrhoea..... the specific affects of thyroid hormone excess / deficiency on THOSE functions...... that is their area of interest , and why you are seeing them .
Any other effects / increased risks of (allegedly )'excess' thyroid hormone / low TSH to the rest of your body / heart / bones etc etc, are not his concern , (your endo / GP are dealing with those)
So.....for the sake of argument ~ even if you are overmedicating yourself with thyroid hormone in a desperate attempt to to try to get your bowel to move at all .. then it hasn't worked has it, cos your bowel still isn't working properly.
Ask them "If my GUT was suffering from an excess of thyroid hormone , what effect would it have ? ".. presumably the answer would be "diarrhoea/ over frequent bowel movements " .. which you clearly are NOT suffering from.
so even if the rest of your body is suffering. or at risk from from too much thyroid hormone,, you gut clearly isn't... and that is what you want his expertise on .. how to help your gut / bowel work better .
If they suggest you need to reduce thyroid hormone and don't have any other suggestions ,, then ask since i have no bowel motility with this level of fT4 /f T3 / TSH.. how do you thing it will be improvesd by a lower level of T4 /T3 ?
~ take your current results for fT4 / fT3 / TSH level on this current dose .. so if he asks he can clearly see quickly and easily that your T4 / T3 are in range .
~ try really hard not to baffle him with loads of 'old' stuff about thyroid/ conversion/T3 reverse T3etc etc .. you have a tendency to get far too involved in that and confuse the heck out of people in the process(then they just want to get you out of the room because they think "o.f.f.s. i'm lost , i give up" ) ..
~ use your time during the appointment wisely .
~ keep it logical and clearly related to your gut .
~ discuss what they think the functional problems are with your gut and what is causing them
~ and what they think might help and why .
~ don't be defensive . have an open mind and be honest . hopefully this attitude will get you the same in return . (they are probably just as nervous about how this appointment will go as you are)
Ask them "If my GUT was suffering from an excess of thyroid hormone , what effect would it have ? ".. presumably the answer would be "diarrhoea/ over frequent bowel movements " .. which you clearly are NOT suffering from
I love this—all of your response in fact Tatty. Bang on. 👍
I had to look up what a neuro gastro is—didn’t know there were such folk. I guess it would explain why they might think they’re educated enough to comment on your thyroid function but honestly, I can’t see that your suppressed TSH has anything at all to do with what’s happening to you. Especially as your TSH was suppressed on levothyroxine alone.
It’s always difficult to know how to handle these visits because we need our specialists—but if they do try to link it, I’d call them out on it. Politely suggest they’re grasping at straws, that you’ve tried all that (reducing your thyroid meds and it’s never worked), that the definition of madness is doing the same thing over and over again and expecting different results.
And that it would be lazy doctoring to suggest that’s the problem here. (You might not want to go that far but it would be true, wouldn’t it?! Your FT4 and FT3 are NOT over range, therefore you aren’t over medicated.)
What did you mean by “test” your rectal prolapse? Are you thinking of the defecation studies that can be done—or something else? I have quite a large rectocele (and probably more than that) and while it’s challenging to deal with (understatement), it’s a structural problem—all of my orifices are no longer lined up where they should be so I’ve had to adjust. Have you seen a physio? They can be great for advising on how to cope with it. Getting the balance right between constipation and stool being too soft is a blooming nightmare, especially if you have frequent changes of routine. (I’m on holiday at the moment—been in Tenerife since Wednesday, went down with norovirus on Thursday—absolute carnage in the pants department…😭 🙈)
I think what you need to do is to decide what YOU want to be the outcome of this appointment. If you want to be referred for more tests, ask for them and give good explanations as to why you need them. As Tatty said, shut down the thyroid conversation if it comes up, just say, “I’m 99% confident that isn’t the issue, WHAT ELSE can we investigate?”
I don’t understand I am beyond exhausted I mean can’t pick up a 2 liter bottle of water it’s too much. I have made it out of bed for 1 hour today wahoo . Zero zero appetite. I presume over medication I would be hungry.
Yes I have excessive perineal descent - had the proctography etc a year ago and def worse rectocele is 5cm ? and severe rectal hypo sensitivity is so bad that when they blow balloon and tell them when to stop . It was the max air and didn’t feel anything I tell them can’t feel anything . . But what concerns me it’s getting worse. I use the Trans anal irrigation system and still can’t get it out it’s all fallen. But the static mri of pelvis I had done a month ago and ‘normal’ can’t see it.
Basically I have had so many test and it’s normal but on images you see massive bowel loop distended in my small bowel especially.
My barium meal is ‘normal’ but I was there for 3 hours to go through the small bowel when it normally takes 40 mins - plus they didn’t put on the results extreme distended bowel loops .
Thank you for taking the time to write and have a great holiday.
I think what I’m frustrated at is everyone saying nothing wrong live with it. But I struggled for many years and thyroid T3 was 2 ( must of been) .
i can’t even write a sentence properly my brain is so fogged
Ah, perineal descent! Great, isn’t it? Just when I thought things couldn’t get more weird down there, they did!
I don’t think we’ve ever asked—how did this all start? I had a scan through your earlier posts but didn’t pick it up. I assume none of your doctors thought of thyroid-related stuff to start with? Did it all begin with a diagnosis of chronic fatigue or fibromyalgia? About the only good thing that might eventually come from Covid is more work being done to understand chronic fatigue conditions.
Or do you have something like Ehlers-Danlos? That also seems to come with a side helping of chronic fatigue.
I think my prolapse issues originated with the birth of my big-headed son 26 years ago. It’s incredibly common for the damage done in childbirth not to show up until peri-menopause. My maternal grandmother also had prolapsing issues (also had hypothyroidism) so I think there’s probably a genetic theme.
Thanks for the holiday wishes—it’s taken almost 4 days to get over the stomach bug (massive thanks to the woman on my plane sitting in the row in front of mine who threw up everywhere on take-off 🤦🏽♀️😂🤦🏽♀️) so a huge chunk of my holiday is already lost, alas. I’ve not even tried eating today so far. So much for cocktails and sangria. 🍷🤷🏽♀️😫
Hi, I'm sorry you are having to go through this, I have had my share of pompous doctors. I would recommend taking someone with you as they are usually less patronising with a witness. Stomach issues are a sympton of low thyroid hormones, but I doubt he knows that. If he starts on about your thyroid levels ask him to deal with your gastric issues as you are already under supervision with your thyroid medication. He may not even have your records of thyroid because the NHS don't always share all records with each other, he may only have a referral letter about your gastric issues. I know how awful it is to be at the mercy of these people. But you don't have to do what they say. Take it one step at a time. I hope it goes well.How long have you been taking t3, it can take a long time to recover if you have been low for a long time. I hope it goes well and you get some help.
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