In April I set up a website ibshypo.com that introduced Acquired Resistance to Thyroid Hormone (ARTH) healthunlocked.com/thyroidu... .
I’ve now added a second topic Subnormal TSH Secretion ibshypo.com/index.php/subno... which I believe explains why some patients are hypothyroid with ‘normal’ serum hormone levels and why they do not recover when their hormone levels are restored. As mentioned in the detail I believe the reason these patients are so hypothyroid is because their TSH is not elevated.
This is essentially the second half of the hypothyroidism topic. New items will be posted in the future, but I don’t intend to announce them on thyroid fora. Subnormal TSH Secretion is a double-edged sword, it explains why some patients need T3 with higher than normal hormone levels but also emphasises that we should avoid suppressing our TSH if possible.
Ibshypo.com is a scientific resource presenting my research over the past two decades. I feel we need to explain the underlying mechanisms of hypothyroidism if we are to persuade the medical community, they tend to ignore patients and practise pseudo-science with studies founded on prejudice rather than clinical evidence. The only way forward is good science. Hopefully, this will stimulate debate and lead to better research.
I have also added a small item under the ‘Snippets’ heading which describes some evidence that reverse T3 inhibits type-2 deiodinase (T4 to T3 conversion) ibshypo.com/index.php/rever... .
I’m happy to take comments and answer questions.
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jimh111
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WOW !!! This has been long and waited for . I was one who had all the hypo/hyper symptoms yet on paper it was perfect . This went on for over fifteen years . Eventually to have TT . Had my Dr's been astute and more alert and not put all their eggs in one basket (*TSH*).I would probably still have my thyroids . I'm sure many are singing the same song even this day and age .
Thank You for bringing this to the publics attentions . Hopefully many can save their thyroids and emotional and physical well-being .
Thank-you for your reply. Like an idiot I lost the details of a couple of the patients who gave permission, I wanted to notify them first. I'm sorry you lost your thyroid, we need to move the science on, stop doing useless research (some studies seem to be deliberately useless so they can have an easy life). It's difficult but we need to confront the complexity, not run from it.
I've considered this for the future but it's a question of finding the time. It takes a great deal of effort to write a topic, collate the evidence and verify that it is accurate. In the near term I'd like to focus on developing the subject matter.
Also, it's important to generate a few regular hits so that I get a Google ranking such that the website is found in searches, otherwise it becomes useless. I do post updates in the News section (when I remember). By asking people to check back occasionally I can keep the website active. Many websites have blogs which exist in order to generate high hit rates giving high Google rankings. These blogs are often dashed off with little care to verify accuracy, I do not want to go down this path. I don't plan to post further updates on the fora as I feel it would be abusing the privilege and overstaying my welcome.
I feel I would be abusing the forum if I used it to market my website. I feel it's fair to say hey I've set thissite up but not to regularly post about it.
Although I will add some short entries, especially related to IBS, I won't be doing a blog as such. Blogs are nearly always designed to attract traffic for Google ranking and generating cash, from sales or advertising. Blogs require posting of regular features and I find they are often poor quality, the need to generate 'copy' means there is insufficient time to research and carry out a detailed check of facts. I'm just trying to present what I have found out, it's a way of compensating for my illness, something positive from it.
I will try and mention all new items in the 'News' section so you only need to check that. It's also important that I get people clicking on it from time to time so that if a patient searches on hypothyroidism there is a chance they will eventually come across my website. If nobody sees it my work will have been wasted. I'll still be around on this forum to annoy people from time to time.
Crumbs! The info in the Subnormal TSH secretion seems to describe my case exactly. Seeing an endo for the first time tomorrow and can only hope they know about such detailed biochemistry. They are the lead endo at a university hospital and is involved in academic research so there is a chance they are open minded.
Thank you for your evidently hard work in producing the websites and for all the research leading up to creating them.
Thank-you. Might I suggest you print off the first page of the subnormal TSH secretion topic along with the Summary. If your consultation runs into a dead end you could then ask them to consider it. If your consultation goes well I would 'take the money and run', although you could ask them if they had seen this, if they seem interested.
We need to gently get endocrinologists on board so that they eventually change their approach.
Thank you - yes I was thinking of printing off the info - very timely! BTW I have had a diagnosis of ME/CFS since 1988 so I'm wondering if all people with similar diagnoses have the same TFT profile? That is worthy of some serious in-depth research. I know Dr Myhill sees low FT3 in many of her patients.
I didn't get any treatment from an of my GPs as I wasn't out of range. I did end up speaking a functional private GP who diagnosed hypothyroidism but would not prescribe levo. He gave me Erfa.. I have just finished on bottle of 30mg. I feel no different and in fact the fatigue was worse on some days. So I have to have a rethink as its the cost of consultations and the medication & private script costs which are unsustainable for me. Interesting article though as I have been trying to ask my GP why my TSH is not out of range with FT4/FT3 so low and nearly out of range but of course there was no answer given.
I suspect NDT is not as good as L-T3 for this. Looking back at your post a year ago you do look like a candidate for subnormal TSH secretion with your low normal fT3, fT4. Also, we don't know the bioactivity of your TSH so 3.07 may be very little especially when we look at your fT3, fT4. I'm not sure what you can do. You could self-medicate liothyronine (cheap from Turkey) starting low and splitting doses. In the long term we need to put subnormal TSH secretion on the map and then attitudes will have to change. At the moment they only consider central hypothyroiidsm when the TSH is almost zero.
Yep its very frustrating. The endocrinologist absolutely would not accept there was a problem with the TSH or the other lower levels. Thanks for your reply.
I have been forced to have a more in depth Thyroid test done privately following my GP advising a further TFT test in 6 months time despite symptoms and my TSH being 0.03 and T4 @17. I am hopeful with T3 and other thyroid tests being carried out they may take a different approach.
Yep I can relate! My TSH values were always low but I was clearly HypoT. I thank my lucky stars for the private endo who diagnosed and treated me on my symptoms alone!
I'd like to say a word about "good science". Back in 2008, a group of us participants on e-cigarette-forum.com started up a U.S. non-profit corporation called Consumer Advocates for Smoke-Free Alternatives Association (CASAA, pronounced cuh-SAH.) Our belief is that any non-combusted source of nicotine might be able to serve as an effective and safer substitute to inhaling smoke. But there is a powerful lobby working to against such alternatives. Their weapons include spinning outright lies (e.g., e-cigarettes were invented by tobacco companies as a way to addict children to become new customers) and churning out science-free research.
Supposedly to answer the question, "Do e-cigarettes help people stop smoking," experiments were set up that instead tested whether a particular brand of e-cigarettes helped the majority of subjects to stop smoking. Completely ignored to this day is the issue of effective delivery of nicotine via vapor. Via observation, we know that some folks need more, some need less, and some can even get by with no nicotine at all if the object is to replace inhaling the smoke from burning tobacco with inhaling a vapor instead.
I suspect that many of us who took up smoking did so because we desperately were seeking something to help us deal with massive fatigue and cognitive deficits such as difficulty concentrating. Both are common problems with hypothyroidism, and nicotine can temporarily subdue these symptoms.
As I started to dig into the scientific articles, I began to observe the same lack of good science in the design of research projects about hypothyroidism -- especially about the effect of treatment with T3 on hypothyroid symptoms.
Notably, most don't even bother to measure serum levels of free T3 before, during, or after the treatment. I postulate that if a person isn't low in T3 to begin with, treating them with T3 won't change anything for them. But look how cleverly they have managed to prove the ineffectiveness of adding T3 to the treatment!
Then there is the issue of dosage. If we are going to explore treatment with T3, we should be looking at how much is enough, too little, or too much. Most of the research I've looked used a set dosage for all the subjects.
Thanks for your reply. Certainly e cigarettes is a complex subject, they will help people wean off harmful smoke but on the other hand companies will seek a long term market. Problems are likely to occur with additives, flavours etc. These new products have not received long term testing and it can take decades for effects to be spotted. This is the problem we have with flame retardants which were introduced with good intentions. We need adequate testing protocols.
The important point about T3 is most patients who need it do not need normal amounts. Due to endocrine disruption or an impaired axis they need supraphysiological doses. This is undesirable, we should tackle the root causes. Hopefully, it we can get doctors to recognise these forms of hypothyroidism they will then seek to address the causes. The current studies that supply replacement doses are a waste of time and provide false evidence that denies patients effective treatment.
In the U.S., the problem is that the FDA made the e-cig approval process so super-complicated that it looks suspiciously like the process for approving a new pharmaceutical drug, complete with clinical trials. This would represent an astronomical cost, especially when you take into account that most of the vendors in the U.S. are small businesses. jhsph.edu/news/news-release...
Worst of all is that there were no clues provided as to how a product might meet with the agency's approval. What exactly would the FDA be looking for? What should the product do or not do? So even if somehow a small business could dig up $19 million to conduct the clinical trials, etc., the FDA could still say, "No dice. We don't like it."
Please don't buy into the big lie that flavors were introduced to snag youngsters. The fact is that the "tobacco" flavors fail to even come close to the taste smokers were used to with their favorite brands. So when alternative pleasant flavors were offered in 2009, e-cig users switched to them in droves. It was a sample of English Toffee made by a UK company that finally got me off the cancer sticks.
As for T3, I'm not sure we even know what a "replacement dose" is. How can we know for sure how much T3 an individual's own body was producing before hypoT set in? All I know is that I have not seen a single attempt to individualize the dose. This could be done by testing Free T3 and adjusting the dose until the subject's FT3 is at a certain level. Bottom of the range would not cut it. Perhaps they could test halfway, upper third, and upper quadrant as goals and then compare how much symptoms relief was obtained. Objective measures such as cholesterol levels, BP, etc. could also be brought into play.
It’s difficulty to measure fT3 levels because of the short half-life of T3. We know the thyroid secretes about 6 mcg T3 and also plays a part in deiodinase, so prescribing, say 10 mcg, might give a realistic replacement.
The problem I believe is that many patients who need T3 will have a resistance to thyroid hormone or a down-regulated axis. In both these cases they will need supra physiological doses. This is especially so for the brain. We can determine brain T3 requirements by simply asking the patients, or giving cognitive tests. However, enough T3 for the brain will probably too much for other organs. This is why we have to find ways of correcting the original condition.
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