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Thyroid UK
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Important paper out at last

At long last we have our key paper on treatment and diagnosis out for convenient download. The paper is:

Midgley et al. BMC Endocrine Disorders (2019) 19:37 doi.org/10.1186/s12902-019-...

DEBATE

Time for a reassessment of the treatment of hypothyroidism

Open Access

John E. M. Midgley1*, Anthony D. Toft2, Rolf Larisch3, Johannes W. Dietrich4,5 and Rudolf Hoermann6

I have posted the conclusions here before but this is the whole paper. As you see we have collaborated with Prof Toft as a coauthor which should give more respectability for the UK medics . It should give the field pause for thought as to what they are doing and should do.

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Unfortunately, the link provided doesn't work

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Works for me

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yes, have now accessed

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Thank you for your work on this...and for posting. I hope this paper is read widely. Do doctors read regularly and update themselves?

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bmcendocrdisord.biomedcentr...

Does this link work?

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The one I included in the first post now works for me

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Your original link works for me diogenes. Thank you and your colleagues for this invaluable work. Good to see that Professor Toft is on board with this too.

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Yes it does thank you

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Thank you

"Treatment choices no longer rest primarily on the personal interaction between patient and doctor but have become a mass commodity, based on the increasing use of guidelines not as advisory but obligatory for result interpretation and subsequent treatment. Contrary to all proclaimed efforts towards a more personalised medicine, this has become a regulated consumer mass market as with many other situations. This is of little benefit to patients who will continue to complain, and with some justification, that the medical profession is not listening, thereby abandoning one of its primary functions in the doctor-patient relationship."

We look forward with great hope that, in the not too distant future, (perhaps even with the publishing of new NICE guidelines in Autumn this year!) that the medical profession will begin to acknowledge new ways of thinking, where thyroid patients are believed and listened to and, most importantly...........the TSH test is no longer seen as GOD

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Thank you diogenes As always, your input to diagnosis and treatment of the thyroid is very much appreciated 😊

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Read! thank you, diogenes and congratulations to you and your most eminent fellow authors. As you remark, I hope this report impacts misguided doctrines. I am sending a copy to my Consultant, who is conferring with colleagues regarding my eligibility for a T3 combination trial. I am grateful she has backtracked from her original suggestion, to prove a point, of 'reducing Levothyroxine dose by 50mcgms every two weeks and doing a TSH monthly; if the TSH is above 5mu/L, this would be compatible with a diagnosis of hypothyroidism'. Following a recent second appointment, I am reluctantly following the T4 reduction suggestion, on the basis the incremental reduction, from current 150mcgms dose, is by 25mcgms per month, with monthly testing and GP review for two months, third month review with consultant in July following blood test results at 75mcgms. This suggestion is unconfirmed. A confirmed T3 combination trial decision will now be made when TSH upper range reaches 4.00 not 5.5, as first suggested. Levothyroxine will not be withdrawn, as first suggested. By complying to these conditions, it has been indicated more than once, I will qualify for a T3 combination trial. I suggested the three month reduction timetable by 25mcgms, after suggesting the original route was unethical, dangerous and put patient health at risk. I also confirmed, having spoken to two of my local CCG's, neither quoted applying this process as part of their guidelines. Previously, I have been informed at primary care level, I have Hashimotos, autoimmune thyroid disease, following test results, but to date, this and further DIO2 test evidence has been ignored in favour of reducing TSH to prove a point. As if this was not unsettling enough, there is currently an 8 week delay in seeing my GP. On her notes, later handed to reception, I noted the Consultant had applied discharged, later corrected following disquiet and discussion with nursing staff, to ' To be seen again if necessary (open appointment)'. I did not see this being good practice in the circumstances. Unfortunately, another unsettling appointment, yet better than the first. I am forwarding 'Time for reassessment of the treatment of hypothyroidism', today. Thank you.

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Your endocrinologist sounds horrendous. Such treatment is barbaric.

Email Dionne at Thyroid Uk for list of recommended thyroid specialists

Roughly where in the UK are you?

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South West ... I'm sending copies of 'Time for a reassessment of the treatment of hypothyroidism' to Consultant and GP today. My experience to date has been horrendous. These appointments can take days to recover from. I contacted my two local CCGs in January, following dreadful (I couldn't believe what I was hearing) December consultant appointment. The reason for contacting my immediate local CCG for prescribing guidelines and one other, was due to referral outside my area's commissioning group. Having gathered evidence, I needed 3 months headspace in the garden. Coming back to the reality of your situation really hits you. Thanks, Slowdragon for your response. I really appreciate it.

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If my Levo was reduced even 12.5mcg I grind to complete halt

Which CCG's

You can look up their prescribing rates now, and over time on here

Eg Kernow (Cornwall)

openprescribing.net/analyse...

Torbay

openprescribing.net/analyse...

With DIO2 gene variation you will need small dose of T3. Are you Heterozygous or homozygous?

Vitamins will need good support to maintain optimal levels, especially if dose of Levothyroxine was reduced.

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Heterozygous for the variant type 2- consultant response: 'This is a common genetic variant and does not in itself signify anything.' Rather not refer directly to CCGs if that's ok, but having seen both their prescribing rates confirms the muddle we're in. thanks for confirming link.

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Hi Slowdragon, I meant to acknowledge, I know just what you mean about grinding to a halt ... 6 days in of reducing by 25mcgms and I'm skewed already. Have a good Easter.

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Please, not Bristol or Weston-Super-Mare? (fingers crossed!). If neither, don't say where unless you want to.

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you can uncross fingers

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Phew! I hope you get the T3 trial and begin to feel human again asap.

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sy28

Your consultant started you on a course of action involving repeated reductions of your Levo over several months and then discharged you???? What about her responsibility for checking what happens in her sadistic experiment?

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I am informed: checking has been left to Primary Care (currently 8 week wait to see GP). Consultant will step in once TSH has risen above her ambiguous set of ranges: originally set at 5.5, reduced to 4.00 during her second appointment, later confirmed in writing as two consecutive TSH results above 4 or 1 TSH result above 10. Final paragraph of consultant's second letter, received last week, finally acknowledges I have Hashimoto's due to antibodies being present, based on previous test results. Why am I being put through this torture?

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Have you ever seen this thread?

healthunlocked.com/thyroidu...

It may provide some useful ammunition for you. You are being asked to allow your TSH to rise way above the TSH of healthy people of any age.

I agree that what you are being subjected to is torture.

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Thanks humanbean, by coincidence I came across this earlier and found it helpful. Following diogenes recent post, I sent GP and Consultant copies of 'Time for a reassessment of the treatment of hypothyroidism |BMC Endocrine Disorders | Full text'. I felt its conclusion concurred with my own experience to date.

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Thanks for that, link worked for me and I could access the whole article. It was very interesting and I wonder if the NICE review group will consider this significant?

Michael

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"Thank you" would seem to be so inadequate, but it is sincerely intended, in recognition of the enormous amount of work which you all have done in presenting this paper.

Sadly, thyroid patients in the UK appear to be regarded as clones, who have become secondary, as a priority in a failing, disjointed bureaucratic system.

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Great stuff! Hopefully this will shake the establishment out of their unbelievable resistance to change. and encourage them to realise that by accepting this important work they and their patients have nothing to lose but their chains.

We can dream....

Thank you diogenes

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Thank you so much for this! To patients, it may well seem like raising the Titanic but, without people like yourselves, nothing will ever change.

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Thank you. An excellent paper.

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Thank you so much for this useful paper. Happy Easter!

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I know that most men, including those at ease with the problems of the greatest complexity, can seldom accept even the simplest and most obvious truth if it be such as would oblige them to admit the falsity of conclusions which they have delighted in explaining to colleagues, which they have proudly taught to others, and which they have woven, thread by thread, into the fabric of their lives.

L. Tolstoy

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Yes, wise words. I wonder if it was needed I could live up to high principles.

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That’s made me want to read War & Peace! 🤗

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How I wish Dr S was around to read this.

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Thank you - this is very timely! x

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Many thanks. Much appreciated. Let's hope it's read and digested by the team of authors and reviewers for the new NICE guidelines. Carpe Diem as they say in Roma. There are so many patients with whom this will resonate and offers us all the new seeds of hope in the midst of all the Thyroid Madness! Slainte!

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