Hi All, I have a GP call today on the back of a pretty scathing consultant F/u letter, with the aim to get me off NDT (agreed by previous Consultant) to raise my TSH by giving me a lower dose of Levo.
An all too familiar story I know. That said this is a new GP who possibly knows very little about DIO2+ and or Hashi's, and I wanted to have available Dr Tofts statement and his NHS rank to quote, that not all Consultants agree, but his findings after 40 years in service.
Every best wish, G
Gillybean1, His name is actually Dr Anthony Toft. You can download his paper here tpauk.com/main/wp-content/u...
Thank you RedApple for your swift reply......all over the place today, and thanks for correcting his name.
Every best wish to you, G.
it's AD Toft (not paul).
tpauk.com/main/wp-content/u...
"In the meantime,
I am so concerned about the state of advice on the
management of primary hypothyroidism that I am increasingly
reluctant to suggest ablative therapy with iodine-131 or
surgery in patients with Graves’ disease, irrespective of age
or number of recurrences of hyperthyroidism. Treatment with
a thionamide, in which the hypothalamic-pituitary-thyroid
axis remains intact, making interpretation of thyroid status
simpler, is currently a more attractive proposition. It is not
that I am unprepared to disregard guidelines by prescribing
‘a little too much’ LT4 or combined thyroid hormone therapy,
but I know that an increasing proportion of primary care
physicians, advised by guidelines, will not accept my
advice. Experience of managing more patients with thyroid
disease than most over a period of some 40 years is being
trumped by infl exible guidelines; truly a remarkable state
of affairs. Others hide behind guidelines to avoid the cost
of prescribing liothyronine, which in the UK is exorbitantly
priced by the sole supplier at some £250 for two month’s
supply of 10 μg daily, when well-travelled patients can obtain
supplies for a few euros in Italy and Greece and beyond.
As I see it, we have three choices for those patients convinced
that their present LT4 treatment is inadequate.
1. We can carry on with the current advice and be plagued
by patients who do not achieve their anticipated quality
of life as a result, surely a non-starter.
2. We can prescribe doses of LT4 which do result in TSH
suppression, but are associated with unequivocally
normal serum T3 concentrations as I am unaware that
this combination of results has ever been proved a
risk factor for atrial fi brillation or reduced bone mineral
density, and why should it if the level of the active
hormone is normal?
3. We can prescribe a combination of LT4 and liothyronine,
ensuring that serum TSH is normal.
If the last is the preferred choice, the very number of potential
patients will surely stimulate the pharmaceutical industry
to provide a modifi ed-release form of the active hormone at
last. I can but hope that I do not have to wait as long as King
James did for my views to be accepted"
Toft now retired , so unfortunately you may get some pushback that he's 'out of date' .
if so, use the latest 2023 Liothyronnine Consesus Statement.
It's not brilliant as still far too TSH based , but no one can say it's not up to date. onlinelibrary.wiley.com/doi...
Some of these may be useful :
healthunlocked.com/thyroidu... list of useful-evidence-that-tsh-between-0.04-0.4-has-no-increased-risk-to-patients-on-levothyroxine-updated-new-study-does-show-small-risk
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
healthunlocked.com/thyroidu.... tsh-is-just-the-opinion-of-your-pituitary-about-your-dose-but-your-pituitarys-opinion-is-a-bit-warped-once-you-take-thyroid-hormone.
see first reply to that post for list of evidence showing T3 lowers TSH relatively more than T4 does.
Hello Tattybogle
Once again thank you for helping me with this info, you are an absolute gem.
Ive got my boxing gloves on and I am fully prepared ha ha. So sick of being bullied when unwell.
Every best wish to you, G.
Stick to your guns Gillybean. They are meant to do you no harm.... And might need reminding of that salient fact. If you are settle on your NDT and have done well. They do not have the right to remove you from it. If needs be say you want a second opinion and hunt down a NHS Endo who favours your treatment. It's shocking, disgraceful. But remind the GP they've already had advice from a consultant that you need NDT and are stable and therefore have already met the guidelines.
Of course GPs don't have to take notice of the second consultants advice.......probably a diabetes specialist and knows diddly squat about Hypothyroidism.Good Luck!!
Hi Waveylines, Lovely to hear from you again ,thank you.
I feel like these Consultants are laying in wait to trip us up. This Madam and yes she was, was pretty unkind and as you suspected spot on a 'gestational diabetes expert' quite amusing as I am well menopaused.
Having told me 3 times in the call that I was 'a waste of time' ,'a waste of her time' and 'a waste of an NHS appt', then went on to add, 'that Armour doesnt seem to be working for you as you dont seem to be getting better'. (like point scoring, but this is my health !!!!!!!)
I stayed calm despite fuming , and said 'on the contrary Ive along way to go ,but Im upright for a few hours of the day now on NDT ,exhausted but not bedbound every day. And as Im freezing and its 24 degrees, BP very low, temp 35 AM rising to 36 during day, hair,eyebrow loss, fatigue etc etc I believe I am still undermedicated'.
She said 'the problem with you is you are going by how you feel, and say you want to feel better than this, when quite clearly you are overmedicated because your TSH is suppressed so this is not a thyroid problem'..............I kid you not Waveylines.
I was filled with trepidation at the new Gp call following on from the scathing letter written from Madam, but it was ok, she was very supportive, not too fussed about TSH but conceded that other patients in the practice not doing well on Levo are on and doing well on Armour but have to be under Endo direction, as GP's are not au fait with NDT. She was kind and honest, and said she would refer me back to the previous Prof .
Thank you for taking the time to respond, it means such alot and I am very grateful.
Every best wish to you too, G
Hi Gilly there some choice words I'd like to say about that swful Endo woman. But let me sum it up with this: only a rubbish consultant puts down and blames their patients!! 😤😤And - stuff and nonsense! The trouble with you Ms Endo you don't know what you are doing, don't listen to your patients & have zero people skills/empathy. Am sending you to the Dunce corner. Here's the hat to wear!! 😂🤣 Visualise this Gilly. You will feel soooo much better.
I'm being polite. I wonder if she's the same one who wanted to half my thyroid meds and take me off NDT and put me on levo before I started chemo as she said we have to slow the growth of cancer cells down!! Luckily my Onc was scathing about her recommendations (yes she wrote to him!) and said, No! We are NOT doing that!
Your GP sounds nice... Back to the proff. You will get there and you are making progress. Remember the gains.
And if u have any energy left get someone to fill balloons with water, write on the what u think of her, go outside and stamp on them. That popping sound is very satisfying... & u can watch her drain away!! 😂🤣
Oh Wavey lines, im gonna get a hundred ballons, draw the face and wash her away....that made me laugh out loud thank you x
It must be a power /control thing too, as I started the phone call saying " i was weak and frail now, not thrown inthe towel, and please can you help me "........ at what point does one human to another, get cross, techy with that........and then verbally attack the person admitting they are weak.....its beyond me and technically 'bullying' in the true sense of the word. When she added she 'had nothing to offer me, its not a thyroid problem, im signing you back to your GP' I asked her not to do that, and refer me to someone else on your team if you are not able to help me, please dont abandon me as I will feel more isolated, you have shocked me with your words,.....there was a long pause and she said 'none of my team can help you, its not our policy to treat with Armour' ........
In her vile letter about me to Gp she has put a referral to a different consultant, different hospital. I was advised by my NHS friend to not persue this referral as it is primarily 'a T3 withdrawl program'................it beggers belief, what a nasty unkind unsupportive refferal. Felt like a trip up again......
Ballons here I come !!
Thank you for taking the time, take care too, G
Go Gillybean1 🥊
Ha ha Rapunzel, you are sweet, you made me smile , Thank you and every best wish to you, G.
GP refusing to prescribe T3
Sacked by my endocrinologist - Whoopee!
Update on BH Bloods and GP visit
How long to stop T3 before blood test, so GP won't freak?
T3 prescription at last!!
