I'm done here!: I thought this forum was here to... - Thyroid UK

Thyroid UK

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I'm done here!

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6 years ago•8 Replies

I thought this forum was here to help people improve their health and thyroid function, I guess I was wrong! If I helped one person on this forum I did my job for God!

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8 Replies

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shawsAdministrator6 years ago

I am sorry you have found it necessary to leave the forum. We can only try our best as everyone is different.

We are all very varied in our clinical symptoms but we don't always get a response to our Posts but what we have stated might have been very useful to someone who has read it or in the future.

None of us are medically qualified and only respond with regard to our own situation.

With dysfunctions of the thyroid gland everything is affected from head to toe and you are correct that vitamins/minerals should be optimum and members give their advice according to their own situation.

None of us on this forum expect responses as many are too ill to take in information but other members can respond. It is a struggle when one is very unwell to take in information or to suss out how the forum functions.

in reply to shaws6 years ago

I understand if people get better they won't need you! Vitamin deficiency is a fact if you like it or not and vitamin deficiency does affect the thyroid gland and that's a fact!

shawsAdministrator in reply to 6 years ago

I do not disagree with you in any way. I myself have pernicious anaemia too so I know the necessity of getting a regular injection. My mother also had P.A. but in later life the GP told her she didn't need any more and my sister and I thought that was great. Little did we know what was ahead with result my mother had an awful death which I wouldn't want anyone else to go through.

shawsAdministrator in reply to shaws6 years ago

It is a good thing if members no longer feel the need for support and get on with their lives. We've had long-term members who may not be on often but do pop back for advice when they need.

greygoose6 years ago

You're absolutely right in everything you say. Nutrients are terribly important, and likely to be low when you're hypo. But this is a thyroid forum, and people are mainly concerned about their hormones. Also, this is a UK forum, so many of the things you talk about, people from the UK - or from anywhere in Europe, actually - cannot relate to. A breathing test? Very, very few people on here will have had that. And the health system is totally different in the US.

Do you have a thyroid problem yourself? If not, it's rather difficult for people with thyroid problems to relate to you. We live in a different world. And we relate to people who talk about T4 and T3 and antibodies. I think most people are aware of the importance of nutrients, but TBH, it's not top of their agenda. So, that's probably why you don't get many responses. But, that doesn't mean that what you're saying isn't helpful to the right person. However, improving thyroid function is very rarely an option by the time people get here. For the most part, their thyroids are usually too far gone for nutrients to help with that. What we try to do is help them to live the best they can with what they have. No-one can restore their thyroids.

So, thank you for all the information you've given. I'm sure that someone, down the line, will be very grateful for it.

6 years ago

Hi jm. I left this site in 2017 after a brief time and came back in January of this year. I'm glad I did because what I have learned over time from some very knowledgeable, caring people is an effective way for me to get the help I need from sometimes recalcitrant physicians. Last year was my first blog and since then I've realized a couple of things. First, particular posts may not help me but most likely they are exactly what someone else needs to read. More importantly, each forum, IMO, has its own style.I belong to 3 forums: Atrial Fibrillation, Restless Legs Syndrome, and ThyroidUK. The difference I see is that in one (atrial fib) there is more direct factual information and patients tend to be less disgruntled with healthcare systems in general. I believe this is because A-fib is a well known bonafide illness that doctors can relate to and there is an arsenal of effective care-tried and true treatments-available for us. In my other 2 forums-rls and thyroid- many mainstream treatments offered are not as effective with more nebulous help for our pain and sx. This frustrates not only us but often our docs and when we need to let off steam about our care and dismissal the only safe place we have is our posts. Families are often not the best place for us to air grievances because they are too close to the situation and have their own frustrations about not being able to help. Third, although thyroid problems have been well known to the caregiving communities for years there is much disagreement among mainstream factions about what constitutes appropriate, effective care. While doctors and healthcare systems argue about treatment, patients suffer the consequences. Added to this is the problem of money rearing its ugly head and costs being too often factored into treatment. Again, we have only this forum to vent our frustrations. It would be helpful to know what frustrates you about the forum and would help us to learn how we can be a more effective advocate for members. I know sometimes we get 'off-topic' during discussions. But I believe humor and silliness on occasion is part of helping us cope with many sad components of our illnesses. ("Laughter is the best medicine"-unknown). Try to stay a little longer, state your opinions- good and bad. You may be pleasantly surprised at the help you find here. It takes time. Everything is a process. Take care xx irina.😊

6 years ago

PS. Forgot to mention, I'm also in the US and things are not perfect here either. But I find I can relate to many posts from people around the world. In fact, I like this aspect, as often, IMO, we Americans think we are the only game in town. Thanks for listening. irina

Clarrisa6 years ago

This reminds me of “Maslow’s Hierarchy of Needs.” You may be in more of a self-fulfillment stage, whereas although I am from California I feel more in the “Basic Needs” camp. I am trying to get over my fear of just looking at my labs.

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