Thanks gimel for the info
Yes I am totally aware of this movement you are speaking about - there is also a movement here in the states that I am getting more information on to help us in the same battles to be treated correctly.
As you pointed out there are many aspects of shotty treatment both in the UK and all over the world including here.
Inadequent labs - individual physician diagnoises on normal function. medication dosages - poor follow up care - abuse to patients experiencing conditions of hypothyroidism and being treated as mental patients - etc.
Most important to me - due to my use of Armour - finding minimal support from doctors who treat with this drug - then finding the pharmacies are backed in a corner with minimal supplies due to the Synthyroid suppliers.
I am in the process of trying to get something into our government that stops this inadequent care of us in the states.
This is the hardest thing I have done - and I don't have much experience on this level.
Thanks for sharing.
All "people" and I am not saying just patients. PEOPLE need good care when they are ill ................ PERIOD.
Thyroid disease is so overlooked in this medical world and a handful of doctors whether a Synthroid user or Armour will treat appropriately.
The suffering needs to stop - it's an easy fix for most patients with optimal care.
Please be careful on some of these kinds of items. I’ve seen some of the UK issues too. I don’t have time to find and cite some of the rebuttals I’ve come across but can say it’s very clear there is another side to all this.
The group you mention - Thyroid Patient Advocacy – gets particularly criticized for trying to present unsubstantiated claims, all by its members who have no qualifications to be doing so, regardless. Also, from what I’ve read, the experiences and motivation of their members for wanting to be on thyroid medication is highly questionable. In other words, the fight isn’t over these people ‘not getting what they need’ but is more about them ‘not getting what they ‘want.’’ There’s a big difference between the two.
One item I remember coming across said that when the lifestyles and backgrounds of the people in these groups who attempt to wage these kinds of petitions were probed, their symptoms usually ended up coming from something other than suspicion of a thyroid problem (i.e., weight gain coming after quitting smoking; exhaustion coming from working too many hours without rest; etc.).
Yes, dealing with thyroid is difficult. Yes, it’s not always cut and dry as to what’s going on. But that’s why just turning everything over to what these people want isn’t the answer either.
BTW – I believe ideas of Broda Barnes have been debunked – as well as Broda Barnes himself.
Also, the whole basal body temperature method, as a way to identify thyroid problems was put forth by a person named Dr. Wilson. This dr ended up losing his medical privileges for making false claims. That came after being involved in a malpractice suit in which a woman died under his care. Apparently, Dr Wilson pursued treating this woman, where it wasn’t warranted, because her basal body temperature indicated a so-called problem. Part of the settlement of the case was to order Dr. Wilson to undergo a psychological evaluation. Now does that sound like the kind of thinker you want to follow?
I can say firsthand that dealing with the established medical world can be a real pain. But observing some of the alternative stuff and these kinds of self-serving groups can be a pain too.
One more thing, and this addresses why I feel the need to speak up about some of this stuff: Had I listened and/or gone with some of it; I wouldn’t be here.
Needless to say, I have some big issues with what you said. First, from what I have read, it appears that Dr. Wilson got into body temperature as an indicator of thyroid function only after reading Dr. Barnes book. Further, his approach differed from Dr Barnes, based on info right off the net.
"Dr. Wilson’s approach is entirely different. He argues that the problem is the over- production of a product called reverse T3. Excess Reverse T3 blocks the thyroid receptors and inhibits production of Regular T3. He uses escalating doses of Slow-Release T3 to shut down the person’s own thyroid production and to reduce and halt the production of Reverse T3. He then tapers the Slow-Release T3 and allows the person’s own thyroid production to take over. His approach is intriguing. It has been beneficial for many patients. It has m ade other patients very ill. It's safety is not well-established. It is unproven by any scientific observational process. It is difficult for patients to adhere to the regimen. It is not a technique I recommend."
Clearly this does not relate. In addition, please cite links where I can find any evidence of Dr. Barnes ideas about basal body temperature being debunked.
And last, I take issue with your dismissal of all the people who are clamoring for thyroid help from the medical community as "not getting what they want" versus getting what they need. The real issue is they're not getting what they need to relieve symptoms, to get medication when their TSH is not within the guidelines identified over 5 years ago but still not fully in practice, and to get their BBT into the normal range, etc.
I am aware of the timeline regarding the two persons mentioned. What Wilson did to this woman, using T3 therapy where it wasn’t called for, was sick (not intriguing). But the point is: Everything he did came after initially basing a diagnosis on BBT, which is an inexact method. That’s why drs don’t use it. In this woman’s case; it was deadly.
I’m sorry but I don’t have time right now to go back, search and cite information on criticisms of Broda Barnes. I know you can understand this, since you didn’t give citation information for everything you shared (who wrote “Nothing seems more……?”). However, I will do that as I have time. On the other hand, isn’t the Wilson case proof that step b.) wouldn’t have happened if step a.) hadn’t been in place.
When you reread what I said you’ll see that I only used the word ‘all’ when talking about anything to do with members of the TPA. Who clearly do have an agenda all their very own.
However, I can see that where I wrote “…when the lifestyles and backgrounds of the people in these groups…’ should have said ‘…when the lifestyles and backgrounds of the people in those groups… .‘ ‘Those’ meaning the members of certain British thyroid groups who give drs, at least from what I’ve read, a headache.
Just to make myself clear lest anything gets misunderstood, in no way do I have a “…dismissal of all the people who are clamoring for thyroid help…” (I wouldn’t even use the word ‘clamoring’). Let me point out, again, that I understand pursuing help for a thyroid issue, or the suspicion of such, is not always an easy thing. But I don’t care for the thought that the whole process might start getting steered by quasi-experts and pseudo-science.
Back to my own experiences, part of what drives my thinking… I come to the TSH aspect of things from a different angle. My TSH (and my BBT for that matter) was all within an enviable range before surgery. According to the TSH, everything about my thyroid was looking perfect. According to the qualified health care professional who knew to probe my case further – my thyroid was two times the normal size and about to turn to cancer. I wanted to just go home; he wanted to do more investigating.
I do hope thyroid medicine continues to be driven by what we all need and not turn into what some of ‘those’ want.
What Dr. Wilson had done wrong, shouldn't be a proof that the whole BBT theory is wrong. BBT should be another aspect Doctors should look at, not just by itself, not just by the blood work either.
there might be some people out there, with "wrong motivations", but as hypo patients, we all know that if we have more medication selections, if docs/endos would listen to our symptoms, in addition to the blood test result, if there are more studies on hashi disease, our lives could be happier, easier.
if we don't trust those people out there, we at least shall trust ourselves,
Stella, can you share with us more on the "program" that you are involved in? and perhaps to get more patient here involved in might help you/us on that?
Thanks Helen. Well stated