Anyone have eosinophillic oesophogatis and experience with thyroid meds?

[Olsbird]

hi all, long long story but 5 years of misery not being able to tolerate any thyroid meds without side effects which read like the list in the meds pamphlets and only usually occur when you take too much...….. currently bouncing between gastroenterology, endocrinology,, immunology and my GP. The endo thinks I have an immunological issue and asked my GP to refer me. The GP and immunology think (possibly among other things I dont know...) I have eosinophilic oesophogatis and waiting for the gastroenterology to do camera and biopsy. My question is whether this issue could also cause problems absorbing/processing the thyroid meds - does anyone know? Even on a dose as low as 1/4 tablet NDT every other day I have not very pleasant side effects so I think its definitely the meds causing the oesophogatis symptoms to get much worse and Im wondering if I treat the oesophogatis I might be then able to tolerate thyroid meds, Clearly Im clutching at straws here but seems no one really knows why I cant tolerate the thyroid drugs so my guess as good as anyones is my thought!! Interested to know if anyone else has struggled with thyroid meds that were resolved when oesophagus problem resolved. thanks

[greygoose]

Sorry to be thick, but what is eosinophilic oesophogatis? Google doesn't seem to know any more than me.

[Wetsuiter in reply to greygoose]

I found this greygoose

nhs.uk/conditions/swallowin...

Seems to suggest high stomach acid and food intolerances (whereas many of us have low acid. )

[greygoose in reply to Wetsuiter]

It doesn't actually say high stomach acid (as far as I can see in a brief glance), it says acid reflux. Well, acid reflux can be due to low stomach acid. The symptoms are the same.

[Wetsuiter in reply to greygoose]

yes i think you re right. (does help if i read stuff properly)

[Olsbird in reply to greygoose]

hi, sorry for delay. as I understand it, this form of oesophagitis is basically caused by your body thinking something is an allergen and lining the oesophagus with white blood cells to protect it. so the symptoms can include difficulty swallowing and burning in chest. I think the thyroid meds trigger this as its much worse when I take them. but what I was really hoping was that someone on here may have had experience of struggling with thyroid meds and when their oesophagitis was under control, they were able to tolerate thyroid meds that previously they hadn't been able to. Grasping at straws but this 5 year saga is ridiculous and Im not taking anything so don't feel great but feel better than when I do take them (basically chosen the rock over the hard place). Noone seems to know why I cant tolerate anything - T4 T3 or NDT; they all send me into overdose symptoms even on the lowest dose (eg 1/4 tablet NDT every other day). Ive tried different brands and I react to all of them even on very low doses. Hence the referral to immunology (eventually!).

[greygoose in reply to Olsbird]

Yes, I understand. Always worth asking. I was curious because I'd never heard of it.

So, perhaps you'll allow me to be curious again? What happens when you take levo?

[Olsbird in reply to greygoose]

I go into symptoms of overactive pretty quickly on low dose and the higher the dose the worse it gets - too hot, chest pains, wheezy/breathless, chest burns like its on fire on the right hand side, throat feels like theres a lump in it (gastroenterologist says that's globus) , light headed, chest is really tight, feel terrible, quite twitchy. Same with ndt or liothyronine. its not pleasant

[greygoose in reply to Olsbird]

Have you tried liquid levo? It could be the fillers having that effect on you.

[Olsbird in reply to greygoose]

yes. liquid thyroxine (didn't like it at all - felt like it acted much faster than tablet thyroxine and felt it straight away), normal levothyroxine (2 or 3 brands), Liothyronine (1 brand), NDT (naturethroid and armour). I feel side effects on all of them

had one appointment with immunology by phone and waiting for the next one. Im not taking anything at the moment - I look terrible, my hairs falling out in handfuls, my skin is so dry its lizard like, I bike 25km/day and walk 5m/day and eat salad just to not put weight on....

[greygoose in reply to Olsbird]

Actually, with all that exercise and low calorie intake, you could be making the situation worse. You need calories to convert T4 to T3. If your FT3 level drops, you're likely to put on even more weight. When you're hypo, weight-gain has little to do with how much you eat.

How are your nutrients?

[Olsbird in reply to greygoose]

and. yes, I definitely have an underactive thyroid. I cant remember the latest test results but every time I go to the GP and moan I don't feel well he does hundreds of blood tests and the only thing that ever comes back as a problem is my thyroid levels - everything else is fine.

[greygoose in reply to Olsbird]

It never occurred to me to doubt you have an under-active thyroid.

[Olsbird in reply to greygoose]

Others have doubted..... the last test of everything I did it was all fine. was a while ago so probably due another one though not sure that's the issue for me. all very bizarre. Im hoping the immunologist may have a magic wand. its getting very tiresome! thanks for your replies

[greygoose in reply to Olsbird]

You're welcome. Sorry I can't be of more help, but it's not a problem I've ever come across before.

[Olsbird in reply to greygoose]

yes - I hear that a lot

really don't know what else to do to try and resolve this. everyone I speak to just scratches their heads and says that its 'unusual'. sigh!!

[greygoose in reply to Olsbird]

The only thing I can possibly suggest is that you try taking your levo - or whatever - with some vit C. Might help, might not, but maybe worth a try?

[MichelleHarris in reply to Olsbird]

I started with these same symptoms when I went up to 75mg Levo. Endo said it caused me a Sjogrens flare. I didnt know I had Sjogrens. I was much better on NDT though, from day one but I still have numb patches. I hope you get to the bottom of it.

By the way I dont believe that Globus diagnosis. I think its the swollen Thyroid x

[Catseyes235]

I look at diet first.