I’ve been taking Levothyroxine for over 20 years after my thyroid was removed. I cannot remember what sort of specialist he was but I was referred to him by I think an ent physician. I’d been choking on food, loosing my voice (sounds familiar?!) and my thyroid swelled. He checked it for cancer and found it was benign. I could have it removed as he thought the swelling could be causing my problems but he couldn’t guarantee this. Regretfully I had it removed and been on thyroxine ever since. Needless to say it made no difference.
Just recently I saw some research that said Levothyroxine causes SIBO especially in those with slow gut mobility. Some research has found taking liquid thyroxine actually improves this and has led to SIBO being resolved. Has anyone tried this? It seems available on the NHS. I’ve added a link.
Thanks for posting - this is interesting. I’m awake with SIBO symptoms and storm raging outside!
My diagnosis of hypothyroidism came years before the rheumatic autoimmune diseases and I didn’t even know it was autoimmune back then. I was seeing a GP about ongoing ov weight gain issues along with reflux, fatigue, eczema and alopecia aerate. She ran my thyroid panel and found I had sub clinical hypothyroidism so we decided it would be worth me starting Levothyroixine. I seem to recall that I didn’t notice much change at the time but I also had start of gallstones so my gut issues were attributed to this. This was around 2000/ 2001.
I can relate to your account of unnecessary surgery though. In 2015, already diagnosed with Hashimoto’s, RA and sicca, I had my gallbladder removed unnecessarily. I did have one v large gallstone but was long past it causing any problems. And yet it got wrongly blamed when I suffered acute pancreatitis from Azathioprine and any other gut problems. So I finally agreed to get it taken out. The surgery caused big long term problems with my liver and bile ducts and I suffered a post op wound sepsis afterwards. I should have listened to my instincts which told me that ultrasound had shown no inflammation or rogue little gallstones and this long defunct organ was happy to stay put!
Years earlier, at around the time my hypothyroidism was diagnosed (not sure of the chronology) my father died suddenly and later on my old cat died, I stopped working with toxic materials in my job, my lifelong eczema disappeared abruptly, my hair grew back and my menopause kicked in and I had sudden onset of inflammatory arthritis which arrived overnight and was severe. So it would be hard to sure which of these was the significant/ precipitating one, if any. I think stopping working with solvents and menopause were both key.
I already had chronic GERD, gastritis and constipation/ IBS-c with wind on but never found diets or elimination of certain food groups helped. Furthermore this didn’t worsen or improve with Levothyroxine as far as I’m aware. I’m now on 150mcg and I don’t think it has much bearing on my SIBO but could be wrong. I’ve never been offered liquid levothyroxine although I’ve thought about asking, but have no real issues swallowing such tiny pills.
My gut dysmotility only really ramped up severely with the arrival of my SSc antibody in 2020 and by then I was already on Linaclotide and had already seen a gastro, had various tests such as barium swallow and tilt table come back normal. Like others he blamed my seronegative Sjogren’s and pre-existing hypothyroidism for what he felt would certainly be autonimic dysmotility plus lack of mucosal secretions. I also saw an endocrinologist privately before all this and he put me on something called T3/ Lyrothyroninine which my GP hated as it cost so much. So she referred me to an NHS endocrinologist instead. By this time I’d been long misdiagnosed with RA and tried all the DMARDs with terrible gut side effects. They all finally blamed “primary” Sjogren’s for this even with my SSc antibody. Yet tests have shown I don’t have POTS or other autonomic dysmotility and even my small fibre neuropathy is only confirmed/ presumed due to visible Erythromelalgia. I do get vasovagal syncope but usually it’s only with shock or severe dehydration and is a family thing.
So personally I blame my Systemic Sclerosis and PPI medication, Esomeprazole, for my SIBO. I can’t stop the PPI as risk to lungs from reflux would be too great. I tried stopping PPI some years ago in favour of high dose Ranitidine but I ended up with a horrible chronic dry cough. I guess each of us is different so it would be interesting to know how you got on if you could get liquid Levothyroxine to try out. Also it might be worth looking into T3/ Lyrothyronine, which helped me a lot I felt until the endo started reducing my Levothyroxine dose!
Gosh OldTed, I’m sorry to hear you had sepsis. I think you have done very well and a survivor after all this. Long may it continue. Yes I’m inclined to believe it’s more likely to be UCTD/Scleroderma gut that’s causing my SIBO and of course the PPI. I’ve tried loads of times to cut down or stop the PPI but it’s impossible for me to do without. Incidentally I avoid anti inflammatory’s but have resorted to some with this injury I currently have and even one pill makes my reflux awful and had an oesophageal spasm yesterday which the esomeprazole has stopped for months. I will just try the liquid thyroxine as seems no harm so we shall see!
I have been on Levothyroxine for over 20year , had IBS for many years too. I find that most tablets affect my guts and often cause diarrhoea,when I start a new medication ,but I usually put it down to the lactose in tablets, as I am lactose intolerant and often trial alternatives.
I would be interested in trying a liquid form to see if it eased my gut symptoms,especially if it is lactose free.
Hi Buttsy, that is interesting about the tablets. I’d be almost asking for more in my case as I tend to have constipation dominant SIBO and slow stomach emptying! It’s very difficult to avoid lactose I find as it’s in so many drugs including Losartan which I’m on for Raynaud’s. I’ve never tried giving up dairy but put lactase in it and buy long matured cheese.
Yes I am Losartan too,I make sure I get milk and cream alternatives and try to avoid it as much as possible.
I have spoken to the pharmacist in Boots this morning he said levothyroxine is available in medicine form,on prescription, but it is more expensive and feels the Drs might be reluctant to prescribe it on that basis. He as only known it prescribed to an infant in the past.
I have an appointment next week with Gp but will broach the subject and see what response I get .
I have downloaded the PDF of the link to show him.
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