Thyroid medication and side effects 😢

[birkie]

Hi everyone ❤️

I hope I can pick the brains of all you fellow members 🧠 this last 2 weeks have been the worst on this dose increase of Roma T3, i increased about 6 week's ago from 20mg to 25mg.

Ive always had stomach and bowle issues on all the thyroid medication I've been on, from tablets to capsules to liquid, i fear it irritates my colitis and I'm lactose intolorent to boot.

I can no longer cope with these side effects and I reckon I've given this particular drug (Roma T3) a good go (started on low dose 10mg slowly increased from late Oct last year).

I've had bad bouts of diarrhea with server cramping and inflammation and when I take it on an empty stomach as instructed I get this acid burning sensation like my stomach is on fire(I honestly look 6 months pregnant felling very sick no appetite a server bad headache, I've stuck with it hoping these side effects will ease 🤦‍♀️Thursday last week I just passed watery muddy bowle movements with awful cramps and through sheer desperation I decided enough is enough (I'm honestly not feeling very well at all 😢.

I came of the meds on Friday didn't take my morning dose, had my breakfast as usual, normally I'd pass it through with in 1, 1 half hours after my breakfast on my morning dose (20mg).. I kept my breakfast in, no diarrhea, cramps ect, after a couple of hours I felt clear headed, was able to get about, in that I mean I had some energy, by later afternoon I felt calm (like stepping of a washing machine on spin) managed to actually eat my tea and enjoy it, without the sickly feeling, didn't have any diarrhea, cramps ect.

Did the same the next day and actually went for a walk to my local shop, I managed to get up the small hill without being out of breath, sweating profusely and my heart beating fast with fainting feeling, I usually sit on the wall just before I go into the shop to get my breath back, but not today, I walked right up no problem and right in, no fainting feeling or anything 👍.

So of course I can't stay off this medication (no thyroid) so I go back on it on Sunday 20mg 8am, the acid burn, breakfast right through with cramps, inflammation the whole sorry works, it's just not working for me I feel better of it than on it, and I know this will render me hypo if I don't take some thyroid medication.

I've taken to these last few days of just taking 5mg in the morning smaller dose and spreading it over the day to 25mg 😔 but as I sit here after taking the 5 mg I have the same acid burn stomach pain,head pounding I really don't want to eat any breakfast, I don't want the diarrhea cramps ect😔

I've been trying to get an appointment with the gp who organised the camera (colonoscopy) in June but she only does 2 days and so far no appointments available, I known I just have to keep trying, but now I really just need to see any gp.

I really fear what's next for me, as I've came across endocrinologist /gps who don't believe you can have side effects to thyroid medication, this is why I'm at the stage I am, my gp is just throwing thyroid medication at me hoping for a different out come, well I'm sick of being the Guinea pig, I need to start to recover from my thyroidectomy it's been 4 years of sheer hell!! not to mention the primary hyperparathyroidism thing(waiting on chlorine pet scan in Liverpool) I really can't go on like this and everyday taking this medication is hell for me, if I were recovering felling well I'd not be writing this post or trying to see a gp, I just feel like I'm clinging on with my fingertips hoping everyday I'm going to feel well.. But it never comes😔.

How do I approach my gp with this, especially if I can't get the one who sent me for the colonoscopy? I have all the gory photos of what I'm passing on my phone, that's why this particular gp sent me for the colonoscopy in the first place.. So I suppose I have proof of the diarrhea 👍

Thanks to anyone who replys to this post❤️

[Hidden]

hello sorry you’re having a hard time 😔 with t3 I always let it dissolve under my tongue, which might help you get it into your blood stream and bypass your gut? X

[birkie in reply to Hidden]

Hi❤️

Thank you for your reply, I've been so desperate lately, these are capsules so they won't desolve under my tongue 😔 but I've been taking the powder out and taking it with water, then drinking a full glass right after but no change nothing works, a member suggested I eat with them (don't wait the one hour) but that's not worked either😢.

I don't know if anyone on here as knowledge about hormone replacement, the pill and HRT.. As I had a large clot (thrombosis in my eye some years ago, went blind in it but got some sight back after I was pumped with wafrin.

But the specialist told me I needed to come off the pill right away and I wouldn't be able to take any hormone replacement HRT because of this clot🤷‍♀️

I've been wondering this last year is thyroid hormone replacement the same thing🤷‍♀️

[Hidden in reply to birkie]

hmmm. I don’t think you should take the powder out and swallow them, the capsule is probably protecting it from your gastric juices destroying it. Obviously you need to look into changing the T3, I know of a brand that’s very affordable and you can buy easily that dissolves under the tongue within a minute or so.

HRT I am not sure on.

Re. Colitis, have you done any gut protocols? Fundamentally you need to reduce that inflammation - have you ever tried LDN? X

[birkie in reply to Hidden]

Hi

I don't pay for my meds I'm disabled on benefits 😢 and obviously I can only take what the stupid gp/endo recommend 😠.

I thought maby the capsules were causing the problems in my gut (gelitine and other things) so that's why I took the powder out eliminating the capsules, but it's the same side effects, I was on tablets before.. Same effect.. I've tried just about all the t3 out there.. T4 was worse so no going back on that,

What's LDN?

[Hidden in reply to birkie]

Oh no I am sorry to hear you’re at the hands of the NHS so much. In this case you need to make a case to them to source something that’s better tolerated - helvella has great resources on this.

LDN is low dose naltrexone and can improve inflammation levels in conditions like colitis but you would have to get it yourself, and therefore pay for it so it may not be an option for you right now if you are not in a position to pay for medications. Do you follow any particular diet? X

[SeasideSusie Remembering]

You have the evidence birkie and I fail to see why they're ignoring it. You can't be the only one who has had a problem like this. I honestly don't know how you can move forward, it seems like they don't want to help because they don't believe you. Maybe once you get inside the GP's consulting room you refuse to leave until something is put in place, wait until they've done a letter of referral or phone call. Get bolshy - I know, not a good ídea but it makes you feel like it. So sorry you're going through this.

[birkie in reply to SeasideSusie]

Hi seasideSusie ❤️Weird I've just got off the phone with a lady at my surgery, I'd enquired about the health clinic they do, after not being able to get an appointment with a gp, I thought I'd try the clinic🤷‍♀️ tell them my troubles and give them a glimpse of what I'm bloody passing through my bowle everyday, hell I can't go anywhere if I've taken the 20mg at 8am because of the diarrhea, cramping😔 so Ive taken to just not taking it until I get back from wherever I've been, but it makes no difference to the side effects... Soon as I take it, it starts up again .. 🤮 I honestly feel like it's poisoning me😔 I think I'm going insane 😞😞

Why the hell would you take a drug that makes you feel worse?

And why don't gps/endocrinologists listen to us? 😠😠

[Buddy195 Administrator]

I had such horrible side effects to Roma T3 that I filled in a yellow card and asked GP to write Morningside only’ on my prescription. My Endo explained that Roma is significantly cheaper (hence the GP switching brands) but several patients he knew had adverse effects.

[birkie in reply to Buddy195]

Hi buddy195❤️To be honest I feel like I'm being poisoned every time I take it🤮 I honestly don't know how I've coped this last few months, probably because gp told me the side effects would go the longer I'm on it😠

We are helped immensely on here far more that any gps/endocrinologists help, I've stuck with this T3 in the hope it's going to work 👍 with members giving the correct advice in you need to increase slowly especially on T3, give it time as you won't usually feel better overnight, all great advice.

But I've given this T3 plenty of time with no felling better ony worse, I've tried several forms of T3 even Morningside still same side effects, I just think synthetic medication is not for me😞

[Buddy195 Administrator in reply to birkie]

I had to add T3 super slowly….. 2.5mcg a day at first. I’m definitely more of a tortoise than a hare when adjusting medication. I’m so sorry that you are not tolerating the T3 birkie 🦋

[birkie in reply to Buddy195]

Yep start slowly everytime increase slowly ... Crossing everything I have it will work, but here I am again with another T3 failure 😔😔

[Buddy195 Administrator in reply to birkie]

☹️ hope others can offer more suggestions birkie x

[birkie in reply to Buddy195]

The only way out would be I just don't take it, inform my gp I've taken this decision because of the bad side effects, see what comes of that... If nothing then perhaps I go in to server hypothyroidism and get rushed to hospital 🤷‍♀️ maby then someone will take notice😠

[tattybogle in reply to birkie]

" Then maybe somone will take notice" ....

Be very careful what you choose to do next birkie, i dont think doing that would get you the outcome you want at all .

if you choose to stop T3 again they are very unlikely to agree to re-prescribe it to you for a third time.. they will conclude in your notes you've had a trial of T3 and it has been unsuccessful. so you may find yourself back to having no option but "Levo~ take it or leave it"

and if you did take nothing for long enough to end up being admitted to hospital they would treat you with Levo anyway and possible some T3 initially for a very sort time .

An NHS Hospital Intensive Care Unit is not going to be using NDT to treat hypothyroid 'coma' under any circumstances.

You would be dealt with as someone with a 'non compliant with medication' issue rather than with a a bowel problem / absorption/ colitis issue , because they will see that gastroenterology have done recent bowel investigations and found no evidence to explain your colitis problem.

and realistically , it's a VERY long shot that you would be able to find an NHS end willing to prescribe NDT for you to use currently .

If you want to give NDT a try, the far better option would be to keep the T3 prescription going for now (don't rock the boat ,don't tell them you are trying NDT instead ) ...self source just enough NDT to give it a trial for yourself in the short term ,,, that way you get to find out if NDT also gives you bowel issues or not .. without risking loosing your hard won NHS T3 prescription .

if it's better on NDT , then tell them you are taking it and it's an improvement and fight for it via NHS .. if it's not an improvement ... don't tell then , no harm done ,and you still get your ongoing T3 script.

[birkie in reply to tattybogle]

Hi tattybogle ❤️

I'm sure this surgery just want to give me a heart attack with stress... I've had this T3 Roma since Oct last year, I have had other T3 teva which didn't agree with me either🤦‍♀️ so it's really not been a trial as they first put me on it in 2020, but due to primary hyperparathyroidism symptoms they said they were caused by the t3 🤦‍♀️ and got me off it, put back on T4 to the same symptoms.. Awful T3 results.

Eventually after months of awful T3 blood results the endo put me on T4 liquid.. Again same symptoms same T3 results 🤦‍♀️my gp put me back on T3 after a phone conversation with the endo.

I put my prescription in for my next lot of meds in may, they only give me 1 months supply , gp refused to give me the 25mg(20mg/5mg) saying I needed to see the gp.. OK but that ment I'd have no thyroid medication left, so he sent a box of 10s one to be taken each day🤦‍♀️ give me strength, I take 25mg each day 🤦‍♀️

I have told the prescription staff that my script has to be filled when I have around 14 days supply left as the t3 as to be Orderd in(lactose free) and due to distribution it can take up to 7/14 days.

I ordered it over the prescription line yesterday.. Get a message today "you need to make an appointment for blood work"

The prescription you did yesterday will not be filled as you have Orderd it to early, we recommend you fill it when you have about 7 days left. 🤷‍♀️

I managed to speek to receptionist today explaining the ordering system in the pharmacy... She just told me "you need the bloods done first.. OK give me the appointment... OK first available appointment is July 20...😂😂😂😂😂 OK I may be lucky and have a couple of days meds left... But then when I get the script fill it after the bloods... It can take up to 7/14 days to get it... So I will probably run out... AGAIN!! 😠 ❤️❤️❤️❤️ HEART ATTACK COMING SOON... 😠😠😠😠😠😂

[tattybogle in reply to birkie]

Do it their way (order 7 days before no sooner ) for a couple of months in order to prove the point.

if chemist can't get it in time and you run out .... then plonk yourself at the surgery reception desk and say " i put prescription in 7 day before as instructed by you , i've run out now . what do i take today ?"

it lets them see there is an actual' supply time problem' with their 7 day instruction for that medication, and if you are there having actually run out of tablets , they'll eventually have to deal with it by allowing you to put it in earlier .

running out in your case is not much different to what you've just done anyway .. have few days off because you're sick of the bowel effects .. so allowing it to run out a couple of times in order to prove the point and win the argument, is probably worth it .

[birkie in reply to tattybogle]

I've done the sit in tattybogle, 😩 may, the month before and so on.. But because the prescription line is automated🤖 for some reason it defaults on sending the script.I actually did a letter to the practice manager stating this very problem but didn't manage to post it... Well guess what I took it today and before I left I handed it in... You should have seen the look on the receptionists face🙄.. And then she said.. "I'll see if I can get it to her, but I can't promise a reply as she is very busy😠 can you believe that!! 🙄 well I can't promise I'll not be bugging the life out of you till she does reply 😠😂😂

[tattybogle in reply to birkie]

turn up with a folding card table ...and a jigsaw ... and a flask..... and sandwiches.. and your slippers ... and just set it up in reception.... without saying anything.

lol

[birkie in reply to tattybogle]

😂😂😂😂😂😂😂😂 Great suggestion tattybogle 😂😂😂

[tattybogle in reply to birkie]

oh .. and take some spectacles to look over the top of .. with a headmistress style "well ?.... i'm waiting..... " kind of expression on.

[birkie in reply to tattybogle]

😂😂😂😂😂😂😂😂👀👀

[SlowDragon Administrator]

Quite a few members can’t tolerate Roma

How were you with Teva T3

You obviously need to take your T3 in small doses (certainly initially)

You can cut Teva 20mcg tablets into 1/4’s or 1/2’s

Split as 3 or even 4 smaller doses spread through the day

[birkie in reply to SlowDragon]

Hi slowdragon ❤️

😞😞😞😞 Same on teva, although I will admit not as bad as this Roma as been, it seems the more I increase either of the thyroid medication be it T4, T3 I just become worse I can't seem to stomach the doses, I've always split the t3, I was doing the 20mg morning 5mg evening, I've now got so desperate I'm just taking the 5mg in the morning, 5 afternoon and so on.. I've taken 5mg this morning and having bowle inflammation, I can feel it on my left side... Its a colitis flare I know the pain, and I need to take another 5mg soon🤦‍♀️ it just builds up in my system, there are certain medications I can't take, a specialist once told me I'm not good at taking synthetic medicine, can't stomach, aspirin, antibiotics, ibuprofen, anything with lactose in it... I'm just so sick of this now😔 I just want to feel better😔

[bantam12]

Have you spoken to your Gastro team who look after you colitis wise ? What maintenance meds are you on for that ? If your colitis isn’t in remission they can maybe change your meds to help you reduce the inflammation which will allow you to take the thyroid tabs.

[birkie in reply to bantam12]

Hi bantam12❤️

My gp is my gastro team 🤦‍♀️ when I was diagnosed with it after spending 12 days I hospital the specialist wrote a report to my then gp, I in turn saw him to get a prescription the specialist had recommended (he mentioned this drug to me as a prevention to the colitis)

My gp did the script and I collected it, it was IBS tablets buscopan I thought "that wasn't the drug the gastro mentioned" so I asked my gp, he just said it does the same job, and not to worry just take it as prescribed.

Then they stopped it 2 years ago and told me to buy it, as like my paracetamol we are no longer supply it😞

I've never been offered any other drug even after seeing different gps about flare ups.. No gp seems to care, it stinks 😠 especially as I'm struggling with thyroid medication and colitis flare ups.

You just can't seem to get past the bloody red tape gps put in front of us😠

[Alanna012 in reply to birkie]

Birkie my mother has ulcerative colitis and you are not being looked after properly.

It was some years ago, but my mother was put on continuous steroids for quite some time to stop the inflammation.

Thereafter she was monitored and given steroids during flares. She now has no treatment but knows roughly what gives her symptoms and doesn't get very serious flares. Colitis runs in our family and is likely genetic. I have a sensitive bowel and gut.

T3 speeds up bowl movements and is stimulating. I had diarrhea on Tiromel initially. I found taking the T4 and the T3 together at the exact same time stops this. I split my T4 to match my T3.

What about taking (but not the Roma) the T3 at bedtime?

[Alanna012 in reply to Alanna012]

You need to demand to go back to the appropriate clinic for proper treatment. It is ridiculous.

[birkie in reply to Alanna012]

Tried everything bedtime, early hours of morning, early afternoon... You mentioned the steroids... My gastro gave me them for 4 months after discharge in 2015, I felt amazing no pain nothing I had energy, I cleaned/decorated my home to sell it, I couldn't have done that without the steroids.I got it under good control knew my triggers and kept well away from them I was doing OK just very occasion flare ups but not to bad.

When I have flare ups my gp just tells me to up the buscopan🤦‍♀️ obviously I didn't have graves then, diagnosis of graves 2019 then the awful thyroid drugs were prescribed, since then the colitis as gone haywire and the only way to control it, is not to take the thyroid medication 🤷‍♀️ but I can't do that I have no thyroid 🤦‍♀️

[bantam12 in reply to birkie]

If you have ulcerative colitis you should be permanently under a hospital Gastro team and on medication to prevent flares and keep you in remission. A GP is not able to treat you adequately and Buscopan is definitely not a medication for UC. You should ask/demand a referral to Gastro so you can be assessed and treated properly.

[tattybogle in reply to bantam12]

i don't think birkie ever had a diagnosis of U.C. bantam . Alanna012

3 colonoscopies , latest colonoscopy (early june) found nothing specific .... endoscopy found hiatus hernia ?

[birkie in reply to tattybogle]

Gastro diagnosed reactive colitis he said my bowles were all inflamed with puss bleeding, he showed me my scan he said my bowles were like balloon animals 😞 but he'd never see the length or existent of the bowle being involved in this before.He felt sure it was what I'd ingested that caused the problem (the hospital admission and stay) but he couldn't find any bad bacteria or infection within the bowle... So it definitely what's going in.. And the only culprit is thyroid medication 🤷‍♀️

[tattybogle in reply to birkie]

was that what they saw on the latest colonoscopy/ investigation in june ... or was that an earlier investigation. ?

What was outcome/advice from gastro seeing that balooning on scan ... anything? meds? .. can you get back in touch ith him again if GP was unwilling to prescribe the medication he originally recommended (what was it ?)

[tattybogle in reply to tattybogle]

p.s birkie . have you ever tried slippery elm ?

would no doubt make absorption worse .... but might help heal / soothe gut .

[birkie in reply to tattybogle]

Right tattbogle.. Gona pick your fantastic brain 🧠👍My first initial gastro problem was 2015 rushed to hospital bleeding from back passage vomiting blood.. It was like burgundy coffee grounds.

Gastro after 8 days says I have reactive colitis.

Go home after 1a days with steroids and a souposed drug for prevention, although I'm sure the gastro didn't prescribe buscopan 🤷‍♀️

I find out my triggers cheese is a killer although I am lactose intolorent to but we're doing OK.

Until I was diagnosed with hyperthyroidism given anti thyroid drugs same effect bowle stomach problem eventually vomiting it back tried both cabiz ptu.

Rushed to hospital in thyroid crisis as gp didn't care I couldn't stomach the anti thyroid drugs eventho I begged him to help me😠.

So there's the first attack (anti thyroid drugs)

OK when I'm in A&E they give me 4 small white tablets when I eventually come round, the doc saying take these now.. I do🤦‍♀️ what happens I vomit my insides up, bowles blow up rushed for scan, bowles the same puss, inflammation, in a large part of the bowle, colonoscopy follows after endo says its lymphoma of the bowle as his never heard of anyone having a bad reaction to anti thyroid medication 😠

It was not lymphoma, the specialist agreed it was the anti thyroid drug, I never took it the 15 days in hospital and my bowles returned to normal.

Next time this happens is when I had full thyroidectomy and we're put on thyroid medication SYNTHETIC so can you see the connection 👍 it's not just anti thyroid /thyroid, I've had other tablets, aspirin, ibuprofen, some painkillers containing lactose, also I found out when I had a covid I took lempsip not taken that since my teens, started with diarrhea bowle inflammation after around 3 days of taking it🤦‍♀️ just looked at the ingredients before I did another cup.... It contained... Lactose stopped it took paracetamol and bowle/stomach resolved👍

So I reckon I'm just to sensitive to certain ingredients 😞

[tattybogle in reply to birkie]

those same sort of ingredients are just as likely to be in NDT though aren't they ?

[birkie in reply to tattybogle]

But I though NDT was natural dessicated thyroid 🤔 didn't think anything was added tattybogle 🤦‍♀️that was going to be my suggestion when I see the endo 🤷‍♀️ gp said if there were no sign of cancer in the bowle then I would need to see the endocrinologist, the colonoscopy I had in June, the report said bowle not changed as last one in 2019 with polips still same, but no cancer detected👍

[tattybogle in reply to birkie]

loads of things are added as a necessary part of the manufacturing/ tablet making process ... the different brands of NDT will differ as to exactly which added excipients are used , but there is not any brand of NDT that is 'just pig thyroid and nothing else added'.

[birkie in reply to tattybogle]

Well that's cleared that up tattybogle 😁 but I could still give it a try, after all I've tried everything else 👍

[tattybogle]

So here's a rather radical suggestion birkie :

go back to levo (because you can't do this with T3)

take one weeks worth of Levo all in one dose . you'll have a crap day or two with bowel issues

but.... that means you can have 5 days a week with no bowel issues .

.... and you won't end up totally hypo because you'll have enough T4 in the system ...and even if your conversion is rubbish your body will still be able to get 'some' T3 at a fairly stable level.

which is a better situation for your body than some T3 then 'nothing for days' .

[birkie in reply to tattybogle]

I was taken off T4 levothyroxin for the same reason tattybogle it gave me the same side effects and my absorbtion was dire so we're my bloods🤷‍♀️ endo felt because my T3 was 1.5 I'd be better on T3 which I thought would be fantastic as its hard to get, but didn't figure in the side effects 🤦‍♀️ I've always been bad on synthetic medicine, can't take any hormone replacement, HRT the pill, I wonder if natural medication is the way forward NDT maby.. 🤔

[tattybogle in reply to birkie]

yes , i realised you wouldn't get on with taking levo every day ....but i'm thinking if the bowel problem stops on the days when you don't take any .. then it's worth seeing if you could try taking a weeks worth in one go ... in order to have more days without bowel probs .

at least in the short term , until you can come up with a better solution .. because obviously not taking anything isn't really an option without a thyroid .

yes it's worth getting some NDT to try (but realistically you'll be on your own with that as highly unlikely you can find an NHS Endo to prescribe it) , sorry i must have mis-remembered , i thought you'd already tried NDT

have you already tried Liquid Levo ? .. maybe that is what i was remembering .

[birkie in reply to tattybogle]

Yeah T4 liquid levothyroxin, but honestly that affected me almost as soon as it hit my stomach, I also vomited it back on several occasions, I couldn't take it any longer, also when I picked it up from the chemist there was no box no ingredients list no leaflet , it was in a white bag nothing but a spoon and instruction on how much to take on the bottle... So goodness knows what was in it tattybogle 🤷‍♀️

[Aurealis]

an out of the ball park suggestion for you - have you tried taking cod liver oil?

[birkie in reply to Aurealis]

Ho don't... 🤦‍♀️ A member on our parathyroid site suggested I take it to try to increase my vit d level, I order 7 seas big bottle and start on it.. OK for first 2/3 days then AGAIN the bowle /stomach issues start up 😩 but I push on until I have inflammation bad pain and my poo looks light greasey, (I have gallstones ) I couldn't stomach it and came off it, everything went back to normal.. So it was definitely the oil😞I've honestly tried everything but everytime I end up with the stomach /bowle issues😠