Other community groups

[Sailing14]

I joined a caeliac group today as I may be having a blood test to see if I have antibodies and for some further information. I was surprised to see a lot less activity on this site and it made me think even more, that the thyroid condition is very complex with posts nearly every few minutes at times.

[Jazzw]

Oh yes. This is probably one of the most active groups on Healthunlocked. The other thing you’ll notice is the breadth of knowledge people have here—I sometimes think you could ask a question here about just about any health condition under the sun and someone would have a crack at answering it. 🙂

The “why” this should be—well, I think it’s because as a group, a considerable number of us with thyroid conditions are poorly looked after by our health care partners. We’re told it’s not the level of our thyroid meds, that maybe it’s all in our heads, that maybe we have depression etc.

Not everyone with a thyroid problem will need us but those who do soon learn that the only way to feel better is to learn everything they can about their condition and all the co-existing conditions that often go with it (vitamin and minerals deficiencies, gut problems, coping with fatigue, brain fog etc). It turns us into searchers for truth!

[tattybogle]

there have been 22,713 new members on ThyroidUK's forum on HealthUnlocked in just under 3 yrs healthunlocked.com/thyroidu..... that's about 145 new members every week.

[SlowDragon Administrator]

This is by far the biggest and most active forum on Health Unlocked….over 130,000 members and growing daily. Majority based in U.K.

And, as tattybogle pointed out……many more joining every week

There’s almost 2 million people in U.K. on levothyroxine, often on incorrect/ inadequate dose levothyroxine and/or untreated low vitamin levels or deficiencies and/or food intolerances

and many more people trying to get diagnosed/treated

[radd]

Sailing14,

130,720 members and 153,973 posts since 2010, says it all really.

[CoeliacMum1]

Having one autoimmune condition often leads to another there’s an increase risk due to various factors why this is so… what I’ve found is as a Thyroid patient myself, we tend to get a raw deal of medical advice and treatment, as it’s such a vast area of symptoms to address …along with it pre/peri and post menopause to add to the mix for women and other hormonal issues to add in insulin, cortisol etc it complicates thing’s further and in my experience baffles GPs and some endocrinologists often a process of elimination.

GPs initially often write these areas off as other lifestyle problems, so we aren’t heard after complaining many times about various symptoms and many end up with health anxiety related issues, due to not addressing the thyroid, so many and I’ve been there myself have had to eliminate many other factors “ it could be this” just to be back at thyroid being the main problem, and is often under medicated because of lack of thorough testing… maybe not personally the GPs fault but the system.

It’s shocking that we should have to know more about our thyroid conditions, to get or battle to get right treatment.

I’m also Coeliac and have Pernicious Anaemia and where these other conditions can have complications it’s basically easy for GPs to treat as for Coeliac for example it’s a gluten free diet for life, about all they can say and do nothing for them to do but monitor, you’re probably referred to gastroenterologist if digestive issues and dietitian if any nutritional deficiencies and obviously just blood tests annually a Dexa scan once in a while and it’s left to the individual to look after themselves by eating well, just to add gluten free food isn’t very healthy often junk in it … so it’s not quite as complicated as Thyroid for a GP to treat/deal with so many coeliacs will get answers to their problems. Thyroid is more complicated in my opinion because balancing hormones… obviously if you can actually get GP/Endocrinologist to prescribe correct to your specification.

I think just the vast amount of thyroid patients trying to help themselves on here speaks very poorly of how well this area is treated by our healthcare system and how much money actually could be saved if it was properly addressed.

[SarahJane1471]

I was on an anxiety forum many years ago but I left because I felt it was very aggressive, almost to the point that if you didn’t agree with someone you were shouted down. This forum is full of kindness, vast knowledge, great moderation, and no one judges people.

I have seen another forum for thyroid problems ( I won’t name it) which seems very pushy about a certain method of treatment ( again I won’t name it ). This forum is open minded.

I’m staying 😊