Done with this drug😔

[birkie]

I just want to put this out on here, as many of you know who have read my posts recently I'm struggling with awful stomach and bowle pain (bad diarrhea /cramps nausea, and inflammation, sweating .On Monday I woke feeling the worst since my thyroid was in my neck, sweating constantly had a marked tremor in my hands, vibrations from my pubic bone down my legs to ankles, and in my hands which as continued until I'd had enough and on Friday, I stopped the T3 (Roma 25mg split 10mg,10mg,5mg) my bowles were so inflamed I look 6 months pregnant I just couldn't stand the diarrhea and pain anymore.

Today I feel better, my sweating has diminished a bit but hasn't totally gone, my shaking has also gone down a bit but is still there, the pain and swelling in the bowles has gone down to, but the vibrations in upper and lower limbs continue.

I can only compare the fits of shaking and sweating with the bone vibration to episodes, I have them way more when on the T3🤷‍♀️ I'm wondering if this drug.. A, effects the menupause by making it worse? Or B, it's got something to do with low cortisol (which I have mentioned on here and got a lovely response by a member 💓) I'm not over medicated last thyroid bloods done 20th July 2023...(TSH..1.77..range 0.30..4.50)...T3...5.4..range.. 3.10..6.80).

I've been trying and failing to get an appointment with a gp but been unsuccessful, I've also been to Liverpool twice recently to see a specialist and to have a chlorine pet scan for a Parathyroid problem.

So we're not able to make any appointments in those weeks 😔 but it's still the same crap.. You call between 8am/9am they either cut you off.. (because the appointments have been filled) or they just tell you no appointments available, even for a gp to call you back 😠.. (rant over)..

Today eventho I'm having small sweats (less frequent) and the vibrations (less frequent) today I've passed a formed motion👍 no watery muddy poo my bowles feel calm, no pain or inflammation, I feel good, want to eat, now I know this will not last as I don't have a thyroid so need thyroid replacement, but I don't want to go back on the thyroid medication my surgery have Guinea piged me with since 2019 (T4, T3 lactose free, I'm lactose intolerant and have colitis ).

I fear my only recourse is to go to my surgery and show the receptionist what I'm passing while on this drug.. And belive me it's not a nice picture, I had to show my son it.. He was shocked and said its not normal to pass that unless you have a bug or virus in the bowle (I had colonoscopy in May no cancer showed up and the gp said if no cancer is detected I will need to see the endocrinologist about it but it's hell trying to get that appointment 😠

I'm not going back on it.. I just can't 😔

[waveylines]

Sounds more like an allergy response. Have you tried switching to a differs ent brand. We can be affected by the fillers. I certainly remember being very poorly but all settle once I switched to a different brand with different fillers

[birkie in reply to waveylines]

Hi waveylines❤️

Since 2019 after full thyroidectomy my surgery have had me on all kinds of thyroid drugs from T4 which was the worst, I tried the tablet form, gel form, liquid form none worked.

Endo finally moved me on to T3 teva which did restore my T3 level better than the T4, but again left me with the stomach /bowle problems.

They took me off T3 in 2020 after I started having new symptoms the bone vibrations my calcium went over range as did my pth endocrinologist saying I probably have primary hyperparathyroidism she blamed the t3 drug🤷‍♀️ I'm getting that sorted with chlorine pet scan after the ultrasound found a nodule in my neck.

The T4 did exactly the same as it did when I first went on it, I begged my gp to put me back on t3 as again my T3 level dropped, he prescribed Roma T3 been on it since Oct last year, started on 10mg worked my way up.. But with evert increase the stomach /bowle problem becomes worse, I can't get past 20mg tried 25mg but it's hell.. I'm lost as to what to do now... Not getting much help from my surgery and I'm not going back on that drug.

[Jaydee1507 Administrator]

Birkie what dietary changes have you tried for your gut?

Is there anything that you have tried that helps?

Levo & T3 are not drugs by the way. Hormones.

[birkie in reply to Jaydee1507]

I'm lactose intolerant so dairy free, my diet is very bland I can't eat spicy food, pastry, bread, cheese, I did a 12 month food diary after my colitis diagnosis and found my trigger foods, did very well until my thyroid went overactive (graves) and we're put on anti thyroid drugs, Same thing happened same side effects.. Diarrhea, cramping, inflamation.. Bowle scan showed my bowles were badly inflamed, turned out it was the anti thyroid drug.And I know all the stomach /bowle problems are down to the thyroid drugs weather its T3, T4 (lactose free) my surgery are not interested in effects from the thyroid drugs saying thyroid drugs should not effect the bowle or stomach.. Honestly I'm fighting a loosing battle with them.. Maby they will take notice if I go severely hypo and get taken to hospital 😔 that was the only way they took notice that I couldn't stomach the anti thyroid drugs... Rushed into hospital in thyroid crisis 🤷‍♀️

[waveylines]

Honestly change the brand of your Liothyronine. Ask your GP to check the fillers. There are other brands. It won't be the active ingredient but what they use to bulk it. Your GP also need to check out your gut issues to make sure there's no allergies or other causes.. I had a lot of trouble mine was low B12 and gluten intolerance.... Likely Coeliacs. But the consequence was it made me sensitive to some fillers in tablets. That hasn't changed though my guts have healed now.

[birkie in reply to waveylines]

According to my surgery there are only 2 T3 drugs that are lactose free.. Teva which was bad and this Roma which is bad... The T4 was also teva (lactose free) my bowles are as they should be today calm, no pain no cramps, no inflammation.But I can bet you a million dollars when I go back on them the stomach /bowle problems will return.. My surgery have given me no help since my colonoscopy in May, as I said, waited for the result no cancer found was supposed to see a gp for an endocrinologist referral but can't get an appointment 😠 my only recourse is to go to the surgery tell them to pass a message on to a gp I've stopped my T3 medication because of server diarrhea, cramps, inflammation, show her the pictures and hope someone replies... And to be quite honest would hypo render me any different in my health to what I'm going through taking the t3.. At least my bowles and stomach are back to normal now🤷‍♀️

[waveylines]

Sorry to hear this. My Liothyronine knowledge is limited as its NDT that I'm on and been on for years. Glad your tummy's settled since stopping and you can tolerate the levothyroxine. Clearly somethings not right. Hope you get sorted soon. Xx

[birkie in reply to waveylines]

I can't tolerate T4 or T3... I'm on T3 only waveylines.. T4 was actually worse in that it didn't restore my T3 level, that's why I was put on T3 only which although did restore my T3 level it still gives me the stomach /bowle problems.. I'm now on no thyroid drugs at all 😔 seeing as I'm now feeling a bit better and are able to venture out I'm going to my surgery to get this sorted👍

[waveylines in reply to birkie]

Oh Nooo.... What a nightmare for you. Keeping my fingers crossed for you. 🤞🤞