thyroiduk.org - further-reading - thyroid-diagnosis-and-treatment

[shaws]

This may have already been read but I think it will interest members who've not read it:

thyroiduk.org/further-readi...

[knitwitty]

Thank you Shaws, some excellent recommendations, I wonder how long it will be before anyone in the medical community takes any notice.

[shaws Administrator in reply to knitwitty]

I assume they will disregard it altogether - it would mean they would have to allow their brains to retain information. Maybe need T3 themselves !!!!

I think more females than males develop dysfunctional thyroid glands, but the professionals (mainly male) seem to not consider how best to treat those who've dysfunctional thyroid glands. They ignore patients' pleas to restore health and have removed NDTs - through lies despite it being the very first replacement to restore health to hypo patients. Before that they died a horrible death. They've also made it extremely difficult to get T3 prescribed.

Why did doctors - trained before blood tests - prescribe upon symptoms alone and slowly dose was increased (i.e. NDT).

[knitwitty in reply to shaws]

"Why did doctors - trained before blood tests - prescribe upon symptoms alone and slowly dose was increased (i.e. NDT)."

That, I think, is the million dollar question. I suspect that in the past doctors maybe had more time to listen to their patients and they were better at joining up the dots with regards to a multitude of symptoms.

Today they have less time and want to get you out of the door as fast as possible . They have also been trained to think that levothyroxine is a miracle medication and anyone who doesn't get better when they are given it must have something unrelated to their thyroid being wrong with them, and as it's mostly women who have thyroid problems ergo it must be a mental issue.

They have also been trained that TSH , even though it is not a thyroid hormone, is the only thing they need to look at for diagnosis and management of thyroid problems.

We have a long way to go !

[JAmanda]

Thanks. It's interesting but I don't understand how docs can do what is suggested in (7) in any kind of personalised way. Maybe they could do it generally like is often done here and say your T3 and t4 need to be in the upper quartile etc but what evidence would they use to personalise that?

[shaws Administrator in reply to JAmanda]

They used their brains before but have now been restricted in prescribing.

GPs can only prescribe levothyroxine (T4) and withdrawing NDT (the very original and safety shown since 1892) and also withdrawing T3 due to its extortionate price.

Never are patients asked if they'd like to try an alternative.

[JAmanda in reply to shaws]

But it says docs will decide the best levels a patient will need and aim to reach them. But how will they decide that? I’ve seen advice here that people should aim to get their levels to what they were before (if they knew them), or t3 to 50% through range but some say 75% plus... What if docs set the levels at 25% through range? I don’t really get where (7) is coming from.

[HashiFedUp]

I’m glad the medical profession is catching up with all of us, finally. We all knew this already. Someone send it to NICE!!

[Stourie in reply to HashiFedUp]

Did it not say that NICE weren’t going with it? Jo xx

[shaws Administrator in reply to HashiFedUp]

All of our older doctors (two of the last trained in clinical symptoms have died within the last five years) knew all clinical symptoms and prescribed NDT or T3, or what they thought would suit the patient best.

One saved the life of the following woman and thousands of doctors used to do the same but now prevented due to the 'rules'.

dailyrecord.co.uk/news/real...

Dr P and Dr Skinner saved many people from clinical symptoms from hypothyroidism etc. but both were pursued by the Associations in later life and caused immense mental suffering that Dr P resigned his licence so that he could still advise patients.

One of Dr Skinner's admirers did a calculation of how many times he had to appear before the GMC (always discharged as doing nothing wrong). This is a link:-

whatdotheyknow.com/request/...

We also used to have T3 prescribed on a trial basis. Both NDT and T3 have been removed. NDT - through misinformation - despite it safety been proven since 1892 which was the very first thyroid hormone replacement which saved lives and people didn't die an awful death again.

[DippyDame]

If only the medics would listen and catch up with the scientists!!

[shaws Administrator in reply to DippyDame]

I just wonder what the 'professionals' are paid - who keep many hypo patients very symptomatic.

[knitwitty in reply to shaws]

If they are drug company shareholders , a great deal, the cynic in me thinks it is in their best interests to keep us a s unwell a possible, think of all those painkillers, statins, anti depressants etc... we need if we aren't adequately treated.

[DippyDame in reply to shaws]

I don't have a problem with much of the NHS. I just cannot understand why thyroid disease is so poorly addressed in med schools and so badly treated on a regular basis... when the relevant research is out there.It just does not make sense!

Patients suffer long term, often quietly behind closed doors.... the neglect continues.

[knitwitty in reply to DippyDame]

I can't understand it either unless the cynic in me has really hit on the reason in my reply to Shaws above, I hope I'm completely wrong !

[MichelleHarris in reply to DippyDame]

I watched all the med school training on Thyroid with my med school son. I was very surprised that the training is really very good! They are told to test anyone with frozen shoulders, raised cholesterol etc etc for Thyroid dysfunction. Its the GP’s who totally disregard their training and leave people suffering in false economy. Why? x

[DippyDame in reply to MichelleHarris]

They seem to lose their way when it comes to understanding and analysing the results of those tests....and/or when patients do not respond to LT4.

"Take this little white pill for the rest of your life and you will be well again", seems to be a stock response. Hope over expectation!

It's time that they were taught good old fashioned clinical evaluation instead of relying so much on computer screens. How many look carefully at the patience as they enter the surgery....and ask how they feel.

I heard recently of an endo who spoke to his patient as he lay back on his chair with his feet on his desk. Are manners old fashioned too!

Good luck to your son I somehow think he will understand thyroid disease better than most med students!

Maybe being ancient adds to my cynicism!

DD x

[knitwitty in reply to MichelleHarris]

Michelle see if you can persuade your son to specialise in thyroid problems, he's never be out of work if he became an expert in that area. Ask him to read through the comments on here if he's in any doubt about the need for some thyroid experts in the medical profession.

[MichelleHarris in reply to knitwitty]

I have tried so hard and he started off with the right attitude but the longer he is away the more arrogant and dismissive he becomes. I recently had lots of abnormal results but he just found it amusing as hes used to seeing people on deaths door I suppose. He will not go in to Endocrinology, its not sexy enough and too complicated. Hes going to be a surgeon or a GP atm x

[knitwitty in reply to MichelleHarris]

We need plenty of GP's and surgeons too. I suppose his reason for not wanting to go into thyroid endocrinology is why there are so few people in that specialism, maybe in a few years it will come full circle and an interest might be sparked again.

[shaws Administrator in reply to DippyDame]

Considering that they have to follow the 'rules' set out by the BTA who themselves seem baffled about how to restore patients' health, how could they possibly train medical students in how best to restore hypo/hyper patients to good health - when they've withdrawn NDT (contains all of the hormones a healthy gland would do) and safety is well proven since 1892 and have also withdrawn T3 except if approved by an Endo but is still not often prescribed.

The suffering continues but patients are probably offered 'other prescriptions' such as antidepressants or pain relief or anything else to get the patient out of the surgery.

Unfortunately the following - withdrawn recently - and I think that is a cruel and stupid decision i.e. Natural Dessicated Thyroid Hormones saved lives since 1892 onwards without the need for blood tests at all and it was all based upon the patients' improvements symptoms and relief of them.

Those who do fine on levo that's o.k. but the fact that 'options' have been withdrawn by those 'experts' who seem to be very ignorant altogether about signs/symptoms and will probably be prescribing 'extras' i.e. anti-depressants, or pain relief etc etc or blaming the patient. Neither do they do a 'Full Thyroid Hormone Test' which includes the Frees, i.e. FT3 and FT4.

My GP said 'your TSH is too low, T3 too high and T4 too low. I said I know doctor, I take T3 alone that's why T3 is high. He responded and said but it converts to T4. I responded, "No doctor that's incorrect". It's the other way around.

[Marinaaa]

I visited my endo yesterday and with my TSH in 4.6 she insisted that it was fine and I shouldn´t be considering t4 so much, which is low at the moment, because the important is TSH. She said that if Iowered it I could end up having arrithmia and osteoporosis. I wonder, is there an endo somewhere who can really treat this? I told her I had felt much better in the past with a lower TSH (between 1-2 ) , she answered I was risking my heart health then.

Didnt answer anything, I won´t be coming back, but I feel puzzled.

[knitwitty in reply to Marinaaa]

Was she a diabetic specialist endocrinologist ? that's the only explanation I can think of for her ignorance, it really doesn't fill us with hope if she isn't does it .

[Marinaaa in reply to knitwitty]

I dont know her speciality, she is one of the few endos I have to visit on my insurance board. I would say they are all quite alike, as some friends visited two others and it was pretty much the same situation.

[DippyDame in reply to Marinaaa]

She clearly doesn't even grasp the basics of testing and medicating thyroid disease!

[Marinaaa]

Maybe the only treatment for us is the naturopathic path, or self treatment, I guess. I dont understand a thing.

[knitwitty in reply to Marinaaa]

Sadly if you need thyroid hormones I doubt you'd be able to get them naturopathically, they need replacing with actual thyroid hormones, you may have to obtain the yourself and top up what the NHS provides which is wrong on so many levels.

[GrowingVeg]

Thank you, this is very interesting.

[Ilander]

In the paper Shaws linked, the starting point for our thyroid problem is the assumed definition of hypothyroidism. Current practice assumes hypothyroidism is inadequate thyroid hormone due to a diseased or damaged thyroid gland. This definition and the erroneous assumption that TSH is a reliable surrogate for Free T4, results in the use of TSH as the predominant diagnostic. This identifies for treatment only overt primary hypothyroidism, while overlooking all other types which actually comprise the majority. The false assumption that TSH within range represents euthyroidism in both diagnosis and treatment is the root cause for our thyroid problems not being adequately diagnosed and treated and the reason for the "prominent dissatisfaction" reported by the American Thyroid Assn. and many patient advocacy sites like Thyroid UK.

The more comprehensive definition of hypothyroidism is "inadequate T3 genomic effect in tissue throughout the body". This definition recognizes that FT3 is the biologically active thyroid hormone that essentially regulates metabolic activity in cells, even though FT3 is typically ignored in both diagnosis and treatment, based on the false assumption that T4 always converts to T3 as needed. This expanded definition enables diagnosis of all types of hypothyroidism, and enables the effective diagnosis and treatment needed to achieve clinical euthyroidism, which is our goal.

There is no direct measure of T3 genomic effect in tissues, necessitating the use of indirect measures. TSH clearly is not an adequate measure since it has been shown to have a weak correlation with the thyroid hormones and a negligible correlation with hypo symptoms. The best measure of thyroid status of a patient is an evaluation for symptoms typical of hypothyroidism, along with tests for both Free T4 and Free T3. At times additional tests, as identified in the link, are also necessary.

Typically doctors ignore symptoms and only rely on TSH, because they'll say that symptoms are non-specific. It is true that a single symptom can be non-specific; however, having a number of symptoms typical of hypothyroidism, along with FT4 and FT3 that are low in their ranges is strong evidence of hypothyroidism in need of treatment. For treatment FT4 and FT3 levels should both be increased enough to relieve symptoms of hypothyroidism without creating symptoms of hyperthyroidism.