So after another visit to my GP today, (this time for palpatations) I'm wondering how much money the NHS is spending on countless tests/dr's appointments instead of trialling thyroid meds.
As I was sat in the waiting room I was thinking of all the things I've been to the GP for in the last few years, my list is endless.
Anxiety, Depression, Panic Attacks, Heavy Periods, Painful Periods, Missing Periods, IBS, Acid Reflux, Muscle Aches/Pains, Tennis Elbow (twice) Lump in throat -Enlarged Thyroid, General feeling of unwellness, Blocked ears, Sinus infections, Dry Skin, Dry gritty eyes, snoring, constipation and palpatations that I can think of!!!
This list doesn't include referrals I've had to ENT, Endocrinology, Gynaecology, Sleep Clinic, More ultrasounds than I can remember, blood tests, ECG's and more prescriptions than I can count!!!
I just fail to understand why the NHS is happy to throw money away with all these tests, which I might add have never found a cause for my continuing symptoms apart from of course in their eyes depression, yet they won't consider trialling Thyroid medication, when I think virtually every one of my symptoms/ailments appear on the list for thyroid problems.
I just wondered how many other people have experienced or are experiencing the same?
As I said I am now going to resort to self treatment but I just don't understand their insistence in relying solely on blood tests when in the long run they could save themselves a small fortune in many cases!!!
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Munchlet
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It isn't the NHS as such. It is the guidelines laid down by the 'Professional' Associations.
One of our doctors, Dr Skinner, now deceased was a one-man Crusader against the guidelines as he said they were stupid and not based on a proper assessment of the patient and he said this caused many to remain unwell and undiagnosed, undertreated and most of these patients made their way to Birmingham or Glasgow to see Dr Skinner.
He also arranged a Conference (he was a Virologist) and invited every Endocrinologist to attend in order to rectify their mistakes in identifying and treating patients who had symptoms but whose TSH didn't conform and it was a parlous situation. One by one they refused, the last on the day before.
He originally became involved as other doctors/consultants couldn't figure out what what was causing the patients to be ill. I think that's where the 'new diseases' came in, i.e. ME, CFS and Fibro as I assume, when patients were diagnosed upon symptoms alone they were given trial of NDT (no levo then nor blood tests originally) and symptoms resolved.
The assumption was that because Dr Skinner, being a Virologist, could figure out what these 'mysterious' illnesses were. Straight away - due to being taught as a junior doctor - he treated the symptoms and for that humane act he was hauled before the GMC about 7 times because of 'complaints' - not by the patients so who would do so?
Dr Skinner died of a stroke and his patients believe it was due to the immense strain being before the GMC so often. At his last hearing, there were 2,500 to 2,700 testimonials from his grateful patients whose lives 'were saved' (their own words). Dr Skinner didn't mind prescribing as he was more concerned in making patients well or prescribing levothyroxine if they hadn't been diagnosed due to the TSH not reaching the desired 10.
He saved the life of Lorraine Cleaver who has a case before the Scottish Parliament at present.
We have read statements by Specialists which we don't agree with - why? Because we, the patients are ignored and it is insisted that only levothyroxine is to be prescribed. We are the first in line to know whether or not a product helps relieve our symptoms or makes them worse. Also doctors mistakenly believe that 'somewhere' in the range for TSH is fine and patient is 'normal range' whilst ignoring their disabling symptoms but prescribing other medications for the symptoms. It couldn't be more ridiculous if they tried.
The BTA and RCoP also make false statements agains the use of NDT and, despite three yearly reminders, one of our Advisers (now deceased) never did get response?
That's why T3 has been withdrawn, not only because more patients were asking for an addition when still unwell on levo, but the now exhorbitant cost of the only licenced one was a wonderful excuse to withdraw it altogether. It was a great opportunity to withdraw T3 altogether which has caused panic.
Also before blood tests and levothyroxine were introduced NDT was the only one to be prescribed but a trial due to symptoms alone. It is harmless for a trial.
Thank you Shaws a very interesting read. I just find it so sad, so many people suffering a lot of them needlessly, a Dr who was only helping people and giving them their lives back but was hounded for it constantly, it's all so wrong!!
The Associations have lost their consciences - they seem to be only dogmatic and they are lucky in that they can prescribe what they want for themselves or families. Not for the patients, some who are already buying their own thyroid hormones they can ill afford to have some sort of a 'life'.
Thanks Shaws, that explains a lot. I found a great Endo in Cumbria; Dr David Walmsley. He sorted out many of my 'problems'; I felt very cared for. Then I moved to Sheffield for work and have had to start again.....pushing that boulder up the hill of ignorance and knowing better than the patient.
I have just looked him, Dr David Walmsley, up to check his hospital coverage etc. and found out that he retired this year! I was last treated by him three years ago now. What a loss!
That is the biggest problem, doctors trained in the 50's with clinical symptoms and NDT alone are retiring or threatened if they don't prescribe levo alone. So many of their principles in bringing good health back to patients are very diluted, particularly in this 'modern' age where we are limited to one hormone alone and patients still have continuing illhealth.
He was a true gent. Cared about every aspect of MY endo, not how graphs should be. He sorted out my hypogonadism as it was interlinked with my well being and thyroid.
The caring seems to have by-passed many Endos/doctors as they don't know any clinical symptoms and have been told the TSH informs them about everything about the patient who remains unwell.
Because if you start taking levo, and get better, you'll stop taking the antidepressants, PPIs, beta-blockers, slimming pills, and all the rest, and Big Pharma will lose several fortunes! That's why.
Very true greygoose, I was purely looking at a saving money in the long run for the NHS. I wasn't thinking about the Pharma companies and the dent it would make in their fortune making industries!
Yes, of course. And I totally agree with you - I've always said it. But, who controls the purse strings? Shaws just said that it's not the NHS at fault, they have their hands tied by the 'guidelines laid down by the 'Professional' Associations.' And, who do you things controls the these associations? Most of the big-wigs that sit on the committees, are in the pay of Big Pharma. So, obviously, they're going to put their interests first - before the interests of the NHS - or the patient!
Our adrenals are the gear box and the thyroid the accelerator - so for some of us - even with our foot hard to the floor, the response is akin to chugging uphill with the handbrake on 😊
No idea - maybe a new gearbox !! I have been fortunate not to suffer with low adrenal output - slightly raised - due to inflammation my Physio/Acupuncturist thought. Also have read that T3 can help with oodles of VitC - rwt3.com
Tiz a complicated area - and way beyond my complete understanding ....
I was in the same boat. after 14 years of keeping my head just above water I have broken out of the rounds of endless clinics etc as you mentioned in your post and have gone to Dr P. I am sad that I didn't have the drive to do it earlier.
Ditto! But in the male. Similar tests and scans over the years, nothing found etc. As Londinium 53,646 people in the same boat!
It is not the NHS who do the trials, it is BigPharma itself which conducts them.
THAT is the problem!
Can you think of any reason why any pharma co would want to pay for a series of trials for NDT, when it knows very well that the truthful result would be that it should be added to the list of prescribable drugs? As NDT is, of course, a NATURAL product that same company would be unable to patent it, other manufactures would produce it and their profits would suffer greatly.
We should petition the NHS to carry out their own trials, SELF-FUNDED in order to mitigate the undesirable effects of intervention by BigPharma. Quite why the NHS is so blind that it fails to see the way out of the current situation indicates the possibility that they are under the influence of BigPharma themselves.
There is no need for trials of NDT as it was the only product available (in various forms) from 1892 up until the 60's and some doctors still prescribed until the False Statements were made by the Associations in order to stop the doctors doing their best for their patients.
There didn't appear to be many complaints since 1892. Before that people died a gruesome death. It was a very long used hormone and was called 'grandfathered' which I believe means its safety was well proven.
Assuming that to be the case, we should not be hearing any arguments whatsoever from the medical industry concerning no conclusive trial ever having taken place re NDT.
But we do!
This, for example, is one of the reasons given by the Pan Mersey Area Prescribing Committee to prove their case for their local "blacklisting" of NDT:
"There is lack of quality evidence supporting the use of Armour Thyroid. Most of the
studies carried out are prior to 1980 and do not support the clinical effectiveness of the medication. Studies of this medication vary in size, duration and outcomes"
I have been querying this document now for over 2 years and have not yet received a sensible answer. They have been "discussing" what to say to my formal objection since last September and that has now been further delayed until May.
I am PMing you a copy of my reply to them after the latest additional delay. I have left in some personal info to show its authenticity.
As you will perceive I am absolutely livid at their attitude and stay determined to get a settlement that gets me justice.
Totally agree with you, it is astonishing that thyroid sufferes are pretty consistent in their list of conditions and can recognise thyroid symtoms yet for sone reason the medical profession can't recognise and would rather operate than trial meds - absolutely ludicrous, no wonder NHS is struggling.
One question. Why are the endocrinologists and gps ignoring all these people suffering the same symptoms?? It's not just one or two people saying they are suffering from a long list of symptoms but everyone with a thyroid related problem.
That's what I don't understand snoddyoddbod, I cannot understand how the powers that be can keep insisting that their "lab ranges" are right rather than listen to the thousands of people suffering! It is so infuriating.
Surely lab ranges are a rough guideline like growth charts for children or weight height ratios. Not everyone conforms to the "norm". Every individual is an individual and should be treated as an individual and not part of the norm !!
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