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

[pinkpostitnote]

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E.g. TEVA (which was withdrawn in 2011/12 due to production issues and strength issues) are now back in the market with a 12.5 strength which could be the dose tweak you need to feel better.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. ^
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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?

Hi

100mg Thyroxin taker and vit b12 deficient human as well

Yabu - we don't need a board specifically for us - and I suspect you might like a board where you basically dish out advice and tell us all about your experiences - sorry if that's harsh but you do seem a tad evangelical

That's mn encapsulated ghostly

I'm just exasperated by some appalling advice on a general health thread this week

You'll see appalling advice on a thyroid board as well. Unqualified people shouldn't be advising each other on medical matters online. It's dangerous.

Exasperated yes, evangelical, no. I only give 'correct' NHS / BTF advice.

A friend recently asked about advice to stop BF as her friend had developed mild hypothyroidism and was told to do this by a health care professional. BF wouldnt cause/ effect hypothyroidism. She might choose to stop in order to get more rest to recover. But this isn't necessarily what she might choose nor necessary.

I wouldn't be human if I didn't share my own experience of a chronic condition. I've had to have time off work with it and go through Oc health. So I have perspectives and experiences.

And AIBU is effectively an opinion poll, and I'm asking opinions, so no, not hypocritical. Precisely why I posted here, as in general health I think the opinion would be yes (a brief discussion on a previous thread there leant that way).

Precisely user.

But a board isn't the answer I can see. For that reason.

And yes I stay away from them as I've read rubbish advice!

The BTF and the BMA book have the majority of what helps.

So , based on your experiences can you explain the link between under active thyroid and hyper mobility ( my daughter aged 18 has both ) she takes lethothroxine for her thyroid and has some physio exercises to do , is there anything else we should consider asking the hospital as she will soon be discharged by children's services ( she was diagnosed about 2 years ago )

No link I know of but anything that makes someone with a propensity to weak muscles even weaker is going to potentially be tougher if not kept on top of.

But only that you do the physio, pace as necessary and take the medicine with check ups and adjustments.

Just how was explained to me by my GP and my experience.

I have Hashimoto's, and have wondered for a while why there isn't an autoimmune section under the Health board.

I've had an underactive thyroid for about 15 years since I was 20 and just take thyroxine as the doctor tells me.

If you're well and aren't still experiencing hypo symptoms then you're not missing anything. It works for you, that's great.

I suspect you might like a board where you basically dish out advice and tell us all about your experiences - sorry if that's harsh but you do seem a tad evangelical

You can feel a bit 'evangelical' when you finally stumble across some useful advice after years of poor health when your GP and the NHS tests tell you you're fine (and maybe suffering from hystericalwomanitis) when you feel like you are actually slowly dying. Personally I think a board on MN would be a very good idea. I would have been far more likely to look for help here than a random site.

Unqualified people shouldn't be advising each other on medical matters online. It's dangerous.

True, ideally. But NHS guidelines on thyroid treatment are pretty dangerous too, and possibly getting worse soon. A lot of people are literally on their own. Do you try to help yourself, or wait to be hospitalized and hope you finally run into a doctor who is willing to bend the rules? Even the majority of endocrinologists are woefully informed about the thyroid. Or at least they're hamstrung in their ability to do much to help.(Some of the best doctors in this specialty actually got struck off for helping people.)

I would like a thyroid board - it took me several years of being ill to get a diagnosis and my GP has never mentioned things like ferritin levels and B12 - I've found that out myself from the internet.

It's not all about you hypos you know, us hypers need some love too!

I agree with those saying threads under general (or in some case, childrens) health is more appropriate. Someone who has symptoms but not diagnosed might miss finding info if its in a specialised area they hadnt thought about. Similarly with the mention of autoimmune - dh has hashimotos, ive got commonplace 50 something hypothyroidism. Medical conditions have overlaps so too much subdivision isnt necessarily helpful.

But thanks OP for raising this, and for others who've already shared some sources of info/ support - suggest some of this is transferred to a thread under general health and link to that from here please?

Hypermobility isn't weak muscles. Proving your own point about internet advice.

Just create a thread in general health like the rest of us have to.

Oh, and I agree with the op that AIBU was a perfectly reasonable place to ask this question, as she was happy to take the consensus YABU.

Living; no, but for some with hypermobility improving strength in muscles helps to support the joints and reduce soft tissue damage.

Thyroid conditions affect muscle strength plus fatigue means less activity and muscles gradually atrophy with less use, grow with more use (unless hypo or hyper thyroid)

It's lax ligaments. Strengthen the muscles to support the control of the joint.

serial I think hyper need far more support than hypo actually. Hyper is more usually under good endo care however until / if you're hypo like 'us'.

And the pregnancy thing is a real issue for both, but easily missed for hypo.

I think the one thing I've learnt about thyroid issues (I have hashimotos) is that there are many many many ways in which this bastard disease affects people, and that each of us can only be experts in what works for us as individuals.

pinkpostitnote you say you would promote the NHS guidelines. I'm glad they work for you. But a quick look at the numerous thyroid website and groups out there clearly show that the NHS guidelines fail a lot of people. You are horribly dismissive of natural desiccated thyroid. There is a lot of research supporting it and I am certain that patients taking it have tried the NHS route first. No one takes a costly, non-NHS licensed medicatioh on a whim. The last thing we need is a thread demonising patients who are failed by the NHS.

Likewise it's not a condition that occurs on its own. Many people with thyroid problems may also have conditions such as coeliac, pituitary problems, diabetes, infertility, miscarriages etc etc. I don't think forcing it into a separate section of the board helps. We've all seen threads in Chat or AIBU where someone posts 'I am completely shattered ...'. Sometimes it turns out to be thyroid, sometimes it isn't. It would be massively unhelpful to force those threads into a specific section to be answered by self promoted experts.

I'm sorry I seem dismissive of dessicated. I haven't tried it, but have trawled the research which isn't hugely more favourable over GOOD t4 use. I feel this is the main issue. T4 isn't always tailored correctly.

There are definitely a minority of people who need t3/ t4+t3. And there does need to be a better recognised route to how this is dealt with.

What I do want to say though is things will probably change in the future and are doing so.

There is apparently attempts to create a long life t3 which can be added to a combo t3/t4 pill at the correct strengths, which could potentially be better regulated than natural forms.

Actually, I'm not too impressed with the NHS in all honesty, the website does NOT hold the necessary info on pregnancy for example.

I think I mean more the British thyroid association guidelines - which by the way are beginning to lean towards recognising combo treatment (the EU guidelines are).

I think over all it's a consensus that no, not a separate board, especially, as the poster below outlines, it often arises from a conversation about "I'm shattered". Which could be other things too.

There had been discussions within gen health previously about a separate board, but that's within gen. AIBU is more objective.

And I'm SHAMELESSLY going to promote the British thyroid foundation again as they do great research. This is next year's research grant, which will be very useful:

(The fact it's been funded by a legacy into hypothyroidism hints at how perhaps the individual may have had a mix of experiences in hypothyroidism)

The Toft book regurgitated the mantra that T4 only fits all. It barely scraped the surface of Hashimotos.

I have Hashimotos and also had Graves. I retain antibodies of both. It took 3 YEARS to get referred, and even then it was only because palpitations were so bad I was hospitalised. 7 years under the Endo. I'm now on 275mg T4 and 40 of T3. Finally stable, so signed off.

What's the first thing my GP says? " Oh, I don't know why you need the T3, we don't prescribe it". The endo earned me they would. Luckily she's provided me with a letter.

The real.problem is that GPS are not properly trained in it. Nor is it recognised that you usually get more than one autoimmune. ( Hashimotos, Graves, Reynauds and Addisons here).

There's also a big difference between hypothyroidism and autoimmune hypo.

All in all its taken 18 years to get me stable. And 4 miscarriages which could have been prevented. I think a catch all autoimmune board would be useful. For all the women who just pop a Levo and feel Sandy, there are plenty who are fobbed off by GP's who could do with more info or a friendly shoulder.

I would love a better thread on it. I have zero idea what's going on with mine and am on a cocktail of all sorts of things.

That sounds awful :(

The Toft book does actually mention this - but not what to do/ where to go/ prognosis etc. It also lists all the associated autoimmune conditions.

I'm sorry, but ime the complete handling of thyroid issues isn't great across the board.

And I feel slightly stigmatised too. There's a view it "just makes you fat".

There's Ords thyroiditis and Hashimotos. And then Graves. And two different outcomes for Graves. And then postpartum. It's very complex.

I was tested for addisons as I struggle to put on weight. I loose weight when hypo as well as hyper.

I'm sorry but a £20k research project is not going to change the world. I work in university research funding. £20k covers little more than one researcher and lab costs for a few weeks. It goes nowhere near investigating new or improved drugs or blood tests.