Using internet forums safely

[Girlscout2]

I have had Graves, Hashis, Hashitoxicosis, TED, Thyca and I have also had CFS. I have MTHFR mutations, and have done the rounds of candida, SIBO, nutritional deficiencies, I have mast cell overactivation disorder, histamine intolerance and hormone imbalances etc etc etc etc. I self treat now, with the blessing of my endo (long story) and my antibodies are zero. I have a wonderful gynae, I have wonderful func med doc specialising in CFS. I was misdiagnosed for ten years, mistreated for two, and had three opinions before I found someone who believed me, I've been through four endos post surgery. It is because I studied and studied that endos now say 'you know more about this than GPs'.

However I am not a doctor. I'm not medically trained.

I've learned a lot from the internet and I've also seen some extraordinarily poor, reckless and downright dangerous incorrect and unsafe advice.

My observation is humans when given a framework tend to organise themselves into orthodoxies, this happens in endocrinology, BUT it also happens in internet communities.

I have wasted THOUSANDS of pounds, lots of time and made myself incredibly ill following well intentioned but dogmatic advice from strangers on the internet (in various forums and facebook groups) and seeing quacky hollistic doctors (I now have a fab endo and a fab func med doctor and a fab gynae, I've ditched probably twenty others along the way). I'll never forget the highly recommended holistic doctor, who everyone loved telling me after he'd put me on massive doses of progesterone with NO BLOOD TESTS and kept telling me to increase the dose, that I was 'mentally ill' when I crashed and burned (and it turns out, with proper gynae care, that like a lot of thyroid patient women I am progesterone intolerant). I'm sure I don't need to explain the DESPAIR I felt coming away from the consultation, in bits, and ON MY OWN.

As with all things, common sense applies. We know thyroid care is poor, which is why we end up online, but a lot of internet advice is poor too. Beware anyone telling you that one size fits all, or demanding more information that you are willing to give. Your medical information is private, only share what you feel comfortable sharing. An enlightened doctor is worth their weight in gold. Most of what I've learned I've learned from reading medical papers and asking doctors questions.

I've had people tell me that the ONLY solution to my heavy periods is progesterone.

I've had people tell me that the only solution to my fatigue is hydrocortisone

I've had people tell me that RT3 is the be all and end all and I need T3 only

I've had people tell me I'm iron toxic (I'm not, I have bog standard iron deficiency anaemia) and to come off iron

I've had people - starry eyed - tell me this protocol or that protocol will cure me

I've had people push my boundaries, get angry with me when I failed to get better, or I refused to answer, or I asked questions, and on and on and on.

I also understand the complete and utter desperation of watching your life slip through your fingers like sand with a patronising barbarian of an endo telling me it's 'all in your head'.

I get it.

When I was in the pit of despair (due to following some complete quackery about adrenals) I found this site, and it really helped tiredthyroid.com/blog/2011/...

It's worth remembering with this illness, the ability to THINK clearly is the first thing to go south, so you've got to dig yourself out of a hole whilst your head is in a muddle. I don't spend much time on forums these days (partly because I know quite a lot now and can work it out and no where to look for help) but also because I see so much that I just don't agree with. Particularly people with hypERthyroid dementia from overdosing on T3, but that's a whole other post.

There's an amazing thyroid patient community, the thyroidless ladies in my US little group quite literally saved my life, and continue to hold my hand when I hit bumps in the road, but as someone whose life has been dominated by a very treacherous version of this illness for the best part of two decades, wherever you are, in your doctor's surgery, or online, beware dogmatism and pushy people. And beware anyone demanding you justify or explain yourself, you owe none of us here anything. AT ALL.

it's also worth remembering that the vast majority of those pushing a protocol are NOT well on it themselves. Where are all the well people? is a really good question to ask.

GS

x

[bantam12]

Totally agree, great post 🙂

[shaws]

Unfortunately - due to Big Pharma pushing levothyroxine as the 'be all and end all' of resolving clinical symptoms of hypothyroidism and a majority or patients on this forum now know this is untrue. It does help a portion of hypothyroid patients but not everyone. Those who have no problems with levothyroxine will not be searching the internet.

This forum has Thyroiduk.org.uk and the overall help/advice on their website and work on trying to .change the attitudes of the professionals.

Members who join this forum is due, as you are aware, to poor training of doctors and endocrinologists.

I have also read that levothyroxine became No.1 in the USA due to misinformation with payments to doctors/endocrinologists replacing NDT that contains all of the thyroid hormones with levothyroxine i.e. T4 alone.

Also that the original thyroid hormone replacements have gradually been withdrawn through misinformation about it whilst ignoring that it saved people's lives from 1892 onwards and still resolves symptoms today if it can be sourced privately. Not everyone can afford private prescriptions..

NDT is still successful for many people today but is now frowned upon by doctors and endocrinologists and patients who aren't recovering on levothyroxine are prescribed 'other medications' in order to try to resolve remaining clinical symptoms.

[Girlscout2 in reply to shaws]

Totally agree, it's an absolute nightmare and our medical support is a disgrace. I've had a hellish decade with endos even saying to me privately 'I'd lose my job if I said that these days of course' we seem to be LOSING knowledge, not just not gaining it.

I am also convinced that give nine out of ten thyroid patients are women, that institutional sexism is part of it, Caroline Criado Perez's work demonstrates that women just aren't believed, medical research isn't really geared for us and we wait longer with the same symptoms to be taken seriously and are more frequently dismissed as mentally ill or overly emotional. It's the same in gynaecology, taken me a long time there to find someone to actually listen, work with me and fight my corner there too.

My lovely endo prof said that, 'it's our own fault, if we listened, patients wouldn't be on the internet'

That said the internet is like the wild west, and often we can't verify who people are, or whether what they are saying is true or not. Desperation, fear and no help make us very vulnerable.

[Girlscout2 in reply to Girlscout2]

E.g. I have a lot of admiration for Stop the Thyroid Madness, she's brilliant, however I was SHOCKED at how quickly NDT panic took hold, patients that clearly were not optimal to start with ascribing every pesky symptom to some pharma conspiracy, and how quickly the advice was to get back on levo! That's the kind of thing I'm talking about, it doesn't help.

[Hidden]

I understand from your previous posts I have skimmed through that you too have no thyroid gland, have taken NDT for a while and are not necessarily feeling well now.

Of course I cannot guarantee anything for you as I have no idea what most of your problems actually are, but could make a couple of sensible suggestions that may help.

Of course there's no point in taking the 2 synthetics, levo and liothyronine, as it's perfectly obvious to anybody who is not a doctor that they do not adequately replace the natural human product. The trouble is that the porcine stuff is the best alternative that ever will be available.

It also seems obvious that you should avoid alcohol which many people with thyroid issues have troubles with - I have been TTotal for a number of years and now find it to taste awful. Also avoid tobacco of course, goodness alone that will do to those of us with no thyroid gland.

After 5 or so years on NDT, I am now experiencing strange and horrible feelings if I take anything for a headache such as simple paracetomol.

One health issue that may prove successful to some degree is to lose any weight gained since before being initially diagnosed with your initial thyroid problem.

The one and only drug that had any effect on me during my thyroid "troubles" is Orovite tablets, concentrated vitamins which used to be prescription only in the UK some years ago.

Not much for you to go on but I would never suggest anything that I know very well would be useless for you.

In conclusion I found it interesting that your doctor said they would be sacked if they said certain things to you which may improve your situation.

In the UK our doctors are INSTRUCTED from the General Medical Council to do precisely that if they believe such things have such a possibility. The trouble is that there's very few of them that actually obey this instruction.

[Girlscout2 in reply to Hidden]

Hiya

I've been on NDT since 2013 and I'm doing pretty well on it. I have other issues that are't related to my thyroid and have excellent medical support. And my doctor did tell me, she was very frank and in fact said NDT is 'the only thing that works', what she meant was she can't say that publicly or to her colleagues. I'm not seeking advice for my health and that was not the purpose of my post.

Thanks.

[Cooper27]

Forums do have their positives. I wouldn't understand what my results meant without help from others on internet forums, because no one else in my life has the condition.

The world of thyroid can be very confusing when you first get thrown into it, especially for me, as my GP said "I don't know what your results mean, but there's no treatment we can offer you".

While some people might give bad advice, the other benefit is that others can see that bad advice and correct it. When your GP gives bad advice in a closed room, you just get left in a place of illness, but trusting that your doctor knows best.

[Girlscout2]

I haven't suggested doctor knows best. The link I've posted is worth a read.

[Cooper27 in reply to Girlscout2]

And I didn't suggest you had said doctor knows best, if you read it back. I said in a public forum,we can correct bad advice, while in a private consultation you won't know the advice you're given is bad.

[Girlscout2]

And here we are again! Please stop following me around! And if you read my post again, that is what I said.

[Cooper27 in reply to Girlscout2]

I can promise I'm not following you around! If I've repeated you, perhaps it's a sign I agree with you on that point? I don't know. Anyway I don't know why you've taken offence to me so much, but will leave you to it.

If you need me to read a future reply, you will need to respond to me directly though, as I don't get a notification if you don't.

[Sweeneythyca]

I read your post in total agreement, i have like you a myriad of conditions and have had to oay privately for genetic testing and other diagnostics.... I've been on a year journey with my health, and i am still trying to be heard by docs. I know all my conditions are linked, and have misdiagnosed to the point of being told i am perfectly healthy and my bloods are great despite being the sickest I've ever felt (4 days before a cancer diagnosis) i am 1 year post TT after thyca, and feeling very lost now as simply labeled as hypothyroid, medicated with levo and as long as levels are what they consider 'within range' dismissed tull next appt. I have an endo appt next week and i tey to go armed with medical facts and research yet my latest endo seems irritated and disinterested....

I also have mthfr, do you know of any link with issues absorbing meds with mthfr?

I have issues with candida also, very annoying yet gp does nothing and endo says its just one of those things.

I have spent 1000's+ on seeking answers and now i am in the hands of the nhs as i have no disposable income to pay private.

I wish i could find a doctor that will help instead of fobbing me off. Your endo sounds wonderful.