More support

[Blackkitty73]

I’ve just opened a Hashimotos Facebook support group that is based around scientific approaches if anyone is interested in also joining a brand new Facebook group. It’s a confusing world for newbies and I’ve realised there are a lot of conflicting information out there especially on Facebook. So the group is going to be based around scientific based evidence to support sufferers. I still encourage using this website as well.

facebook.com/groups/7169028...

[Marz]

Have you found Dr Izabella Wentz ?

[Blackkitty73 in reply to Marz]

My Facebook page is to avoid non-scientific discussions. All based on citable evidence from peer reviewed papers research and discussion.

[Marz in reply to Blackkitty73]

With Hashimotos you may well find patient to patient tips helpful.

How is your B12 level ? - Folate ? Are you taking VitC to aid iron absorption ? How much VitD are you taking? Also the important co-factors - magnesium and VitK2-MK7.

Thyroid hormones work better when vits and minerals are optimal ...

[Blackkitty73 in reply to Marz]

I have a Science degree in Human Physiology, Genetics and Zoology. So I’m keenly interested but cited proven scientific evidence for treating and controlling Hashimotos. If your interested please join.

My Facebook page is about cutting out the middle man and using actual peer researched information to inform rather than Chinese whispers.

Of course there is room for open discourse and this is encouraged.

[Marz in reply to Blackkitty73]

I don't do FB - sorry ! I read the research needed thanks ... but no amount of science will help if you do not have the basics in place. Please post a link to a piece of Hashi's research as a taster - thanks ...

[Blackkitty73 in reply to Marz]

What are the basics? Inquiring minds would like to know? And where do think the basics come from, if not from scientific research?

[Angel_of_the_North in reply to Blackkitty73]

I no longer trust most research papers as studies tend to be either badly designed and run, or faked to get the result the sponsor wants

[Blackkitty73 in reply to Marz]

ncbi.nlm.nih.gov/m/pubmed/2...

[helvella Administrator Thyroid UK in reply to Blackkitty73]

That paper hits the all too common issue with scientific papers. It ain't accessible to ordinary mortals. I'm sure you will agree that the abstract is inadequate but the paper is behind an insurmountable paywall.

liebertpub.com/doi/full/10....

[Blackkitty73 in reply to Marz]

ncbi.nlm.nih.gov/m/pubmed/3...

[Marz in reply to Blackkitty73]

Both topics of research are discussed here on a regular basis.

[Blackkitty73 in reply to Marz]

I am offering a scientific based Facebook discussion page only to people who are more interested in proven factual information rather than interpretations, heresay and ideologies. I’ve only given you a small sample of the papers and scientific studies that are discussed as you requested. There are thousands of scientific papers relating to Hashimotos. The Facebook page I’ve created is a safe environment where people aren’t consistently having ideologies and misinformation jammed down their throats which consistently happens on this website and other Facebook support groups unfortunately. Instead it’s based on factual studies and discourse would be based around their meaning.

If it’s not something you’re interested in that’s fine. I am not here to argue about it. Just don’t join and move on.

[Blackkitty73 in reply to Marz]

econtent.hogrefe.com/doi/ab...

[helvella Administrator Thyroid UK in reply to Blackkitty73]

The most difficult thing about vitamin D supplementation is that some people suffer severely if they try to take any such supplement.

Funny how these papers never seem to find even a single individual who is intolerant of vitamin D supplememnts. Is it because it is so rare? Or are such people are excluded from research due to other factors applied to screening of participants?

[Blackkitty73 in reply to helvella]

1 in 300 people have a reaction that is allergy based. Perhaps they did not encounter it in many Hashimotos sufferers.

[helvella Administrator Thyroid UK in reply to Blackkitty73]

Source for 1 in 300, please?

[helvella Administrator Thyroid UK in reply to Blackkitty73]

Our very scientifically based member, diogenes , has posted some scathing criticisms of a fair number of published papers. Very often, the fundamental study designs have fatal flaws which invalidate their conclusions.

Sadly, there are few scientific papers which identify such flaws. (There might be more criticism in discussions but they are often inaccessible to the rest of us.)

[Blackkitty73 in reply to helvella]

Diogenes publishes scientific papers himself as he is a scientist in physiology field and also invented the T3 T4 testing . What he is scathing of is not scientific papers. It’s lay people with little or no scientific knowledge not looking closely at the size of the study group; double blind studies etc which will also be discussed on the Facebook page I have developed. As a lot of information is bandied around as gospel on this website and other groups and by self-proclaimed experts on the Internet are based on small studies and should be taken with interest but not absolute truth. That’s all part of the discourse. Science changes and outcomes all the time as more extensive studies are undertaken.

[helvella Administrator Thyroid UK in reply to Blackkitty73]

I shall leave diogenes say any more about what he is scathing about.

[diogenes Remembering in reply to Blackkitty73]

What I am dismissive of is not the opinions of lay people. Included in my list of dangerous people are the doubtful socalled professional purveyors of half truths. What offends me most are the most wilful medical professionals who, influential as they are, stick obstinately to the currently accepted (incorrect) paradigm that determines exactly how and on what terms thyroid disease is diagnosed and treated. My group has 30 + papers in which we clearly and carefully demolish the present system of thyroid function diagnosis and therapy. At present, the "medical establishment" is trying to reconcile their faulty position by investigating a genetic reason for partients who respond badly to classical T4 therapy. Though genetics certainly has a part to play it is not the whole answer. Put simply, the current position of medics ignores the importance of direct T3 production by the active thyroid as an overall balancer mechanism to control body T4-T3 conversion. When the thyroid is lost, that T3 is unavailable and a whole new balance is struck vis a vis oral ingestion of T4 and its conversion to active T3. This requires a complete rethink of what thyroid hormone ranges now mean in this situation and how to address the problems. This is a basic reason why 10%+ of the disease population cannot convert enough T4 into T3 to regain health. It is all there in our papers written since 2012. Oh and our papers do not have inadequate power as they concern hundreds of patients measured over many years.

[Blackkitty73 in reply to diogenes]

Thanks for that involved answer. Much appreciated. I know your papers are well serviced and I’d love to read some. I was talking about papers with 17 people studied; selection processes not randomised and no long term involvement from participants. These are often jumped on by others as a way to generate an income through half-baked ideologies.

However what is a bigger concern on this site is I’ve been told my doctor is rubbish and I was advised not to take the medication as my doctor has instructed . It always bothers me on a support page when people are allowed to tell others not to trust their doctors, and to not take medication as advised.

I’ve got no issue when a scientifically proven published paper supports a stance if the paper is not flawed or a preliminary study. That is my point.

[StitchFairy in reply to Blackkitty73]

Gosh, you're more than a bit scathing about this site. Unfairly I think. Surely you know that it's patients only chatting to each other. Most people are just trying to help. You have the choice... listen to what others think and read what they write, but then make your own decisions.

[Wetsuiter in reply to Blackkitty73]

I just typed out a long reply, but realised that i was rambling. I believe the value of this forum is to learn to question everything (inc each other).

Have you found the scientific reason that your Dr has advised you to dose the way he did?

[Gcart in reply to Blackkitty73]

My experience of this forum has been a very good one with information which has clearly helped those who use this group.

Most information is based on studies/evidence which has been researched and published as shown with the links provided. Each individual can read up and maybe try for themselves . This forum , in my experience, is always clear about their position when sharing same ie that they are not medics.

Doctors , experts , consultants, where we turn when we are unwell offered me no help whatsoever.

If ,as you say , what they offer is based on science which you suggest will be the right course to follow is very flawed, in my opinion .

Not only is the info here helpful it is always shared in a kind and compassionate way .

My own very good GP once said to me that medicine was as much an art as a science !

PS. For me I now have a quality of life which I can hardly believe , having struggled for years . All down to this forum and what people here share .

[StitchFairy in reply to Blackkitty73]

A lot of information is bandied around as gospel by doctors too, even though patient experience proves it isn't!

[helvella Administrator Thyroid UK]

Afraid I don't do facebook at all.

[Lora7again in reply to helvella]

I don't either since I was hacked by a man I once knew and he stole my family photo's on there ... this is true I am afraid. He was a bit of a stalker and knew me because he used to work with my husband.

[Hidden in reply to helvella]

Snap.

[Angel_of_the_North]

I think it is very rude to try to steal members from another site for your own, especially as you are not complimentary about this one.

[helvella Administrator Thyroid UK in reply to Angel_of_the_North]

Forum guidelines:

24. Do not solicit members to other websites or forums for your own purposes either via posts or the messages system.

[Marz]

Without any science degrees ( but buckets full of common sense ) - it did not take me 20 years to learn that low VitD can be linked to Hashimotos. As reported in your earlier post. You would have discovered this much sooner had you joined this Forum earlier. I joined in 2011 and have learnt so much from the knowledgeable members here. You also mention B12 but not tested - I feel that could be another gap in your knowledge and supplementing will skew further results ...

Most research today is about the 'prevailing bias ' - as discussed by John Ionnides in one of his many papers ... Follow the money.

[Hidden]

It’s a shame you seem to have a rather of negative response to what would seem to be a fantastic idea! There is so much misinformation it seems impossible to wade through it, (and I have a science-based background). Good luck!

[Den1987UK]

Hello Blackkitty73 good morning this is a really good idea and kind for you to start the Facebook group. I would love to join. I do love this forum though so will remain on here. I watch a very good YouTube channel called AskDrKhan he explains about auto immune disease thyroid problems and diet and nutrition and explains how to bring down inflammation due to auto immune diseases like Hashimotos and what to eat and what to avoid. Also explains why we get brain fog and fatigue and arthritis and other health problems. I watched a good video on AskDrKhan YouTube channel where he explains leaky gut in full detail and what you can do to heal it. You have to look at the brain immune gut axis to really understand auto immune disease. I learned from his YouTube channel that you have 10 microglia to 1 neuron and if the microglia trigger and activate too much you get brain fog inflammation and other problems like leaky gut. I drink a 3 ginger and turmeric tea for inflammation control turmeric is a very powerful natural anti inflammatory herb that is very good at reducing inflammation and ginger is a very good natural pain killer. I love this forum and the many people on here and love to help with helpful advice and proven methods to help including looking at your diet very important looking at vitamin levels and absorption problems. Looking at poor conversion of T4 to T3 and why we have it and what can be done to improve and heal and recover. The perpituary gland plays a very big role alongside the thyroid gland and the other two glands in your chest and groin area and is also connected to your stomach and lymphatic system and cardiovascular system. I also love the forum because we help each other to find a proven solution not just scientific but proven by research and many many many years of experience. Going right back to the past the 1840’s Victorian era when the thyroid conditions were discovered and to now and what we have learned and what is still being learned and researched and discovered about thyroid problems and diseases including auto immune disease hoping one day we would know enough to fully understand what can be done to make people feel even more better than what they are now and currently. That could be improved drugs and medication through pharmaceutical research and natural medicine research and studies. Improved surgery through research and studies. Improved research and studies into how the human body works in more detail including parts we don’t know what they actually do and what their function is. The more we understand the better the conditions can be controlled and ultimately healed. For example is there currently a cure for brain fog answer is no there is no medication that can cure it because we still don’t know enough about why it happens and how the human brain and body work yet will there be a cure probably in the future it is known that activated microglia can cause brain fog and diet but other than this not much else is known. We have not got a cure for dimensia currently but again research is gaining and the hopes of a cure are becoming closer and closer. We have come a long way over the years and centuries we can no grow a baby from IVF we can grow a human organ be it a bit hap hazard at the moment but things will improve and the importance of long term funding for research is crucial. We also have not got blood tests for certain conditions and illnesses yet because of lack of funding for research into ways to test for these conditions with blood tests for example MPN’S and other conditions we cannot detect these conditions and illnesses still.