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To ask MNHQ to create a board for all thyroid issues?

(58 Posts)
pinkpostitnote Fri 11-Nov-16 09:11:39

There can be so much confusion, heresay on the internet, worry, difficulty getting treatment or the correct dose levels. There are so many posts I feel if they were collected together in one place it would be helpful.

There is ongoing research on thyroid issues which could be shared.

E.g. TEVA (which was withdrawn in 2011/12 due to production issues and strength issues) are now back in the market with a 12.5 strength which could be the dose tweak you need to feel better. They also have different fillers too. Brands have the potential to be slightly different, though monitoring is supposed to be more rigorous since the TEVA issue. ^
I know hypothyroidism is supposed to be a 'mn cliche' but I think this detracts from genuine advice and so many illnesses are a diagnosis of exclusion, of which it is a valid thing to exclude given it's more common in post partum women and menopausal women.

There's also a MH aspect; I have mild trauma as I developed the condition when young and was frequently dismissed/ struggled to get levels right for many years and my social experiences and education were affected by something no one else had, pre internet.

What do people think?

Itisnoteasybeingdifferent Fri 11-Nov-16 09:13:50

I think YABR...

user1478551766 Fri 11-Nov-16 09:17:29


Thats a very specialist topic and this isn't a medical site.

pinkpostitnote Fri 11-Nov-16 09:20:53

Can you explain the difference between one for diabetes and one for hypothyroidism? (Genuine q)

It is; I agree. But there are some general bits of advice and knowledge and understanding that can be shared. E.g. Quite a lot of medicines can affect or be affected by it.

Advice during pregnancy or conception.

Myths busted.

Or just direct everyone to the BMA book by Dr Toft.

WaitrosePigeon Fri 11-Nov-16 09:22:13

YABU. Where would it end?

Spartak Fri 11-Nov-16 09:24:24

A quick Google shows there are several UK based thyroid support forums already.

pinkpostitnote Fri 11-Nov-16 09:26:10

For example; I am at my healthiest with a tsh of just below 1, and regular cardio at strength stuff (yoga/ Pilates) and don't drink much.

That's just me but I got there through trial and error and good GP support after years of limited support.

And t4 does work for the majority of people.

Mn taught me I need good ferritin, vit d and b12 too. The difference when my ferritin is over 70 is amazing.

There are some co-existing conditions e.g. Pernicious anaemia or coeliac (a low percentage) but worth investigating. (I'm not, but my aunt has pernicious anaemia)

I was clueless to all of this. Though the Toft book outlined it all.

stopfuckingshoutingatme Fri 11-Nov-16 09:26:12

just start a thread, they have ongoing ones for back pain and cancer. leave AIBU and head for general health OP, good luck

ElsaAintAsColdAsMe Fri 11-Nov-16 09:26:44

I don't think it needs a whole topic, but I've seen lots of long running threads on various subjects. You could start one of those.

pinkpostitnote Fri 11-Nov-16 09:27:39

Yes spartak but some lean towards the whole t3 thing which isn't actually needed by everyone. Some yes, but correct adjustments and checking other issues can be what's needed.

NavyandWhite Fri 11-Nov-16 09:27:49

Why don't you start a specific thread over in Health? I've seen different threads for a particular illnesses where posters can chat and support each other that are on going.

PurpleDaisies Fri 11-Nov-16 09:30:07

I agree that it doesn't need a separate topic. General health is right for thyroid questions.

pinkpostitnote Fri 11-Nov-16 09:34:25

Does everyone commenting have experience of thyroid issues?

heron98 Fri 11-Nov-16 09:36:05

I am a bit baffled by all this thyroid stuff.

I've had an underactive thyroid for about 15 years since I was 20 and just take thyroxine as the doctor tells me. I have absolutely no idea what my levels are or any of the acronyms mean that people go on about.

Sometimes I wonder if I'm missing something or should ask more questions.

PurpleDaisies Fri 11-Nov-16 09:37:07

My sister has hypothyroidism, my mil had her thyroid removed and even my other sister's cat had an overactive thyroid.

Thag doesn't change my opinion-general health is the right place for thyroid problems. This isn't a specialist medical forum.

Stellar67 Fri 11-Nov-16 09:39:42

Health Unlocked is the forum to go to. Yes you need to separate the wheat from the chafe but that's the same on a lot of forums.
Start a thread in health. We don't need a separate section.
You are lucky to get good GP support. A lot of people don't.

pinkpostitnote Fri 11-Nov-16 09:40:03

Heron, I was fine until there were other changes and pregnancy. I was unlucky.

Some people are totally fine. I have been fine through wobbles; and not at other times. I'm affected easily as I have hypermobility too. Too much either way weakens muscles so I get affected easily.

Coeliac can develop later which affects absorption of thyroxine. Other drugs also do this but seemingly not always communicated properly.

Stellar67 Fri 11-Nov-16 09:40:36

And yes I have experience of thyroid problems.

RockyTop Fri 11-Nov-16 09:48:47

I have thyroid problems, and diabetes as it happens. I think YABU, general health should cover it. Anecdotally I have a far wider range of things to potentially discuss relating to diabetes than thyroid, but the diabetes board is pretty under used too so I'm not entrirely sure it needs its own topic either.

pinkpostitnote Fri 11-Nov-16 09:51:01

Ok so it's clear not a separate board. That's fine.

I'm just exasperated by some appalling advice on a general health thread this week. Plus there are specific needs for pregnancy which I know isn't know about. I only found out via a radio 4 programme, my GP at the time didn't know , nor booking midwife, by the time you get to the hospital at 12 weeks you have missed the most crucial time.

Health unlocked is mostly ok, but a big leaning towards dessicated thyroid. Plus I had a ridiculous conversation on there where the posters claimed we should be careful about exercising as it "used up t3".

As I say, when all levels are good, I'm a firm believer exercise positively helps the hypothyroid patient - paced and graded. It maintains strength which can easily fade if levels aren't right through inactivity and at extremes the way to body reacts to too much or too little. Also, if your body is used to exercise it's easier to resume after a blip.

Well, for anyone reading, join the BTF and get the Toft book and you're covered.

pinkpostitnote Fri 11-Nov-16 09:51:37

That's interesting rocky, thank you.

pinkpostitnote Fri 11-Nov-16 09:52:01

And yes, far more to discuss in diabetes.

pinkpostitnote Fri 11-Nov-16 09:54:22

I might create a klaxon thread in general with all the info I know has been helpful, links etc which I can bump regularly.

Thanks for responses, genuinely helpful.

PurpleDaisies Fri 11-Nov-16 09:55:22

If you sound the klaxon with no sporn you will get grumpy, disappointed posters. grin

WalterWhitesNipple Fri 11-Nov-16 10:00:50

Yabu (and hypocritical) for putting this in the wrong topic.

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