Simeticone and Hypothyroidism: Has anyone here... - Thyroid UK

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Simeticone and Hypothyroidism

TickTockTock profile image
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Has anyone here tried Simeticone to help with their hypothyroid symptoms? I'm considering a trial to see if it will improve my symptoms, especially brain fog, and I would like to know how other people found it.

Also, if you have tried this which brand did you use?

ibshypo.com/index.php/polyd...

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TickTockTock
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jimh111 profile image
jimh111

ibshypo.com is my website. I was severely hypothyroid with perfect blood test results and eventually diagnosed by the late Dr Gordon Skinner. I needed high dose thyroid hormone to be reasonably well, up to 105 mcg L-T3. After many years I found the cause to be endocrine disruption by polybrominated diphenyl ethers (PBDEs) which are flame retardants used in soft furnishings manufactured before 2004 but still very much around in the environment, in buildings and in the food chain.

PBDEs like many other lipophillic endocrine disrupting chemicals (EDCs) and thyroid hormone is subject to intrahepatic recirculation - the liver excretes the toxin only for it to be reabsorbed in the gut. Studies have shown that if you consume a non-absorbable lipid the EDC attaches to it and is eliminated in the stools. In this way the toxin can be slowly eliminated over a period of months.

A substance called polydimethylsiloxane (PDMS) is used to measure the minute quantities of PBDEs in the athmosphere and in waterways. PDMS is a non-absorbable lipid. By a fortunate coincidence simeticone is an over the counter remedy consisting of a mix of PDMS and silicone. I started a three month trial of simeticone and after one month suffered supra-ventricular tachycardia - the RTH caused by PBDEs had reduced substantially and I had to reduce my L-T3 dose. My brain fog also resolved.

I use Wind-eze capsules on the basis they contain the most simeticone. I don't think the brand will matter, it's just a case of finding the cheapest form that gives the highest dose.

PBDEs have very long elimination half-lives and so can build up in the body over time. Simeticone removes a small amount each day but over time the effect builds up. Simeticone will also eliminate thyroid hormone (which is also lipophillic) so you should not take simeticone close to your thyroid hormone tablets. It's more important to remove the sources of EDCs, in the case of PBDEs this comes down to getting rid of soft furnishings made between the 1970s and 2004 (including foam backed carpets), damp dusting or using a HEPA vacuum and ventilating the home and car frequently.

TickTockTock do you have your blood test results from when you were first diagnosed? How quickly did your hypothyroidism come on? Did anything change around that time such as moving house or job (or having to stay at home due to COVID)?

TickTockTock profile image
TickTockTock in reply to jimh111

Hi jimh111,

Thank you for you amazing response!!

I was diagnosed at 7 with hypothyroidism due to a goitre that looked like I'd swallowed a tennis ball. I was told to eat more seaweed. I'm not sure what the blood tests I had were though as we never had copies of them.

At 15 another doctor told me my thyroid was fine based solely on an ultrasound showing a reduction of the goitre.

Last year, at 32, I was hospitalised for a month with myxedema coma. I was misdiagnosed several times in hospital and locked in the psych ward. At first they though I was a drug addict, they tested me for drugs so many times. Then they gave me the laziest all-encompassing psychiatrist diagnosis it's possible to give someone, Borderline Personality Disorder, and said I'd had a brief reactive psychosis, because I had freaked out and couldn't recognise people and thought they were aliens because I couldn't work out that their Covid masks weren't their actual faces. They did all this whilst knowing I had a childhood diagnosis of hypothyroidism.

Then after 10 days of that insanity, and despite all previous personality traits pointing to their diagnosis being ridiculous, they sent me home despite me begging them to let me stay in hospital because I was not okay and something was very wrong. They then decided I was a hypochondriac liar.

A few days later I ended up back in hospital after collapsing in the street. They finally ran a TSH test...

Then they almost killed me by giving me CNS depressing Olanzapine and Risperidone. I needed CPR because I had no detectable pulse or pain response and had stopped breathing. Oddly I could still see and hear and feel touch, just not pain. This happened three times and I begged them to stop the medication, which they didn't, so I stopped taking it, spat it out when they weren't looking. Felt better within 12 hours of last dose.

They also gave me levothyroxine injections and oral tablets, and after a week of that I was still very ill and my T3 was about 2.4, the lowest it can be on their test. Then they added 20mcg of T3 and I started to improve well after that. They wanted to remove the T3 after I finished the bottle I was given on discharge. I've fought a lot with the endocrinologist and GP to keep taking it. On T4 alone I feel frighteningly ill, my dose was 200mcg per day.

The place I live in currently is a three year old apartment, and I have no car, so it's probably not from anything in the house at present. But I grew up in the 90s and we had plenty of old stuff and lived in old carpeted houses, so there could easily be enough exposure to PBDEs. Despite taking 60mcg of T3 per day, split over 20mcg doses every 8 hours I still have bad brain fog. It went away for a while on the medication but has returned. Also I used to be able to feel the T3 work well for a whole 8 hours, but now I barely notice it the brain fog never leaves, whereas it used to be completely gone.

I did think my deiodinase 3 is too high and converting the T3 to T2 very fast, but maybe there is also some underlying ARTH, hence why I thought I would try your Simeticone recommendation. I went straight out and bought some yesterday after reading about it!

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Helsbells68 profile image
Helsbells68 in reply to TickTockTock

I know this post was from a year ago however I wanted to ask if you eventually tried Simeticone and if you did how you got on, I am considering trialling it myself.

TickTockTock profile image
TickTockTock

I did try it and I was able to halve my medication and I felt much better! That was a while ago now and I am just about to try another six months to see if things improve some more.

helvella profile image
helvellaAdministratorThyroid UK in reply to TickTockTock

Unfortunately, you replied to yourself, not Helsbells68

I've added a callout/mention so they will get an alert.

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