I am currently gob smacked!! The letter below was sent to my very unsupportive GP from an endo whom he asked for advice from after I had asked my GP to trial me on T3.
I would be very interested in hearing your views.
Letter from the endo- gobsmacked!!: I am... - Thyroid UK
Letter from the endo- gobsmacked!!
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tjkj69
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Omg! Let Louise know to put endo on avoid list! Sorry you have had this reaction I am not very knowledgeable but lots on here are and someone will be along with evidence that t3 does help many people.
tjkj, It's bovine splatterance! T3 therapy is monitored the same way as T4 via TSH, FT4 and FT3. What's difficult about that? It seems very inappropriate to discuss other patients medication requests re their private GP being struck off. I can't see how that's relevant to your treatment.
tjkj, what do you think? It's collusion.
Even my unpleasant nasty endo has prescribed me T3 when I had the same lab results you have.
Mmm makes you wonder if there is a veiled threat there? I think he was hinting that the only GPs who would prescribe such an alien med as T3 aren't fit to practice so yes I would say he is warning him off.Then to say a growing movement on the Internet coupled with the low mood and depression bit makes me suspect I know who this Endo is!
BlueMundo in reply to
I've been thinking about the duty of care these Endos should have to us. If they are saying our symptoms are not due to hypo well help us find out what they are caused by! I recently had private bloods for B12, Vit D, Ferritin etc and they were all at insufficient levels. For years I thought everything was down to my Hashi but when investigating other causes for air hunger, fatigue etc I came up with these possibilities. Why don't Endos insist on testing for these things when deficiencies in these vitamins and minerals are so common for many hypo patients‽ The symptoms can be the same as low thyroid so they should expand their research into our health and recovery and do the tests. Pass us on to a different specialist or back to our GP for treatment if deficient. Maybe if Endos weren't so keen to get us out the door we could all work together on improving our health?
in reply to BlueMundo
After 32 years of big endo probs, there won't be enough space here to tell you my tortuous story - but have now found Orthomolecular Medicine. Bought book (Amazon) 'Putting it all together: the New Orthomolecular Nutrition'. It's all about exactly what you mention - low levels of vits & minerals. There seems to be a big movement towards self diagnosis. Though I'm not certain which supplements are needed for low thyroid/adrenals. Good luck!
shawsAdministrator
He is just like many other Endos who are toeing the line of the BTA and RCoP. TSH is king and the patient knows nothing.
The writer of the letter sounds just like another Endocrinologist who has made a presentation to the American Thyroid Association and you can click on his presentation.
The last sentence shows his fear of being struck off and losing his livelihood whilst many patients are unable to work through illhealth.
Think we are singing from the same hymn sheet!
ya a jerk
Levothyroxine cost (approx) 99p for 28 lioythyronine (t3) cost £25 for 28... Hope decision is not underwritten by cost. I personally would fight fire with fire your endo mention studies what studies exactly? Can they show you the evidence how about you find evidence of your own supporting the use of t3- look at American studies and the use.of armour natural dedicated thyroid hormone that contains t4 and t3. Kick em where it hurts fight evidence with evidence! These days you have a.choice of what treatment you can have and where don't accept anything less
Levothyroxine costs are now around £1.76 to £2.58 for 28 tablets, and liothyronine around £102.30 for same number, both from BNF. (Their prices seem to lag other sources somewhat so probably somewhat more than that.)
Rod
Hi Rod my prices are from Bnf 64 (2012)
That makes sense, liothyronine has rocketed in cost in the recent past.
The content of BNF is available online here:
You need to register (free) - but I think it can also be accessed via NHS or NICE without registering - but I have never really checked that out. 
Rod
OMG just check.on website, that's ridiculous it's gone up £80 in 2 years!!! Does that imply increase in demand or vice versa?
It is an increase in price because Mercury Pharma are in a position to charge that much. There is no price control mechanism on "generic" products as competition is supposed to keep prices within reason. But for liothyronine there is no competition so they can get away with it. It is my view that this is likely why they switched away from selling it as a branded product - Tertroxin.
Rod
The current BNF can be found here, without the need for registering :
There must be a way to get a better price if I am able buy 100 (25 mcg) for $23.00. Is it illegal to negotiate?
The payment is behind the scenes - we as patients simply present our prescription and get given the medicine (with a standard flat charge for some of us).
However, as the majority of UK treatment is NHS, even private patients end up being charged about the same amount. That is, in effect, the price that Mercury Pharma charge. So you can try to negotiate but you are unlikely to get anywhere.
This high charge is seen by doctors and they are concerned about it taking too large a chunk of their prescribing budgets.
Rod
Yes, as patients you are stuck but I wondered if the NHS could negotiate a price similar to how they manage the price of T4 or do the pharmacies have to do that? I don't know what's involved in the manufacture of T3 versus T4 but it can't be that different, can it? I may explore that myself.
There is at least some competition on levothyroxine - we have three makes (two at each dosage). Far fewer than there were but still something to act as competition.
Ironically, USA prices for levothyroxine seem high against ours - especially Synthroid.
European suppliers of liothyronine are much less expensive with, for example, Henning Thybon available at between £35 and £60 (retail prices) for 100 tablets (depending on dose - 20, 50 or 100 mcg).
The UK has the problem that unless a company submits a licence application, nothing but Mercury Pharma liothyronine can readily be supplied. All other products would be at least some sort of "special".
Rod
I see; and probably politics are involved with that licensing.
Since the drug plan instituted by President Bush was put in place, branded drugs are out of sight. Nexium, a heartburn pill, is $245 for a month's average dose. If you have the insurance, it is probably $40. Thankfully, many of these drugs have a generic counterpart which is much cheaper even if you have no insurance. None of these have any relationship to the actual cost of manufacturing the drug I'm sure.
Thank you for the information, Rod.
It it were a branded medicine, then we have various mechanisms for "negotiating" prices. As would have been the case when it was sold as Tertroxin. (It is absolutely unchanged in formulation, etc.)
Luckily it is still quite legal for people to import their own medicines (except what we call "controlled drugs" like morphine). Provided they do so for their own needs and don't try to supply the neighbourhood.
In the US we're down to two manufacturers of thyroid meds not including the generic. Two major manufacturers stopped producing the meds in 2013.
Supply and demand is the name of the game. They can charge higher because there are less companies to choose from and people need thyroid meds.
I took the newest drug, Tyrosint, for a while until the price became outrageous. It went from just over $100 (US) to over $300 (US) in about three months time. I was forced to go back to Synthroid which doesn't work as well for me or generic which is worse because quality control is poor.
I was taking 175 mcg of the Tyrosint and a 30-day supply. My insurance covered it, but not fully that is until the price skyrocketed.
Yes, that quote for liothyronine is far too cheap and Rod has quoted the correct price. Its up to date as I had a conversation about this with my pharmacy on Weds - finding out the price of NHS Armour (which is £157.09 for 100 x 1 grain for anyone interested - plus a small dispensing fee).
With NHS costs such as these and all the negative talk amongst Dr's its no wonder many end up self medicating. Its appalling.
Exactly. Ask for chapter and verse. Send him a reply citing the clinical studies that suggest that T3 works.
I wouldn't bother with this endo again. Find a better one. No point fighting fire with fire as they're too pig ignorant to listen.
Your T3 is low. Many in here self medicate!
Goodness! Have a read at Londinium's posting two or three above this one?
Click on and listen to the lecture and you have to wonder if your endo is one of his guy's followers.
Can I ask.... Why do you think you need T3? I appreciate everybody is different one thing that's seems a common theme though is the time taken for everybody to feel better varies, I was very impatient and self.medicated to 150 levo but that made.me more hyper now I'm on a steady 100. This combined with a change of lifestyle ie exercise regularly, good nuitrition avoiding certain chemicals... You can get some reallyuseful information on this on thyroid UK website
Hi Burrfoot. I do exercise daily, eat a plant based diet with oily fish, am gluten free, have removed as many toxins from my environment as possible and still I am shattered most of the time and the brain fog is very frustrating. My T3 is right at the bottom of my labs range and although the 150mcg thyroxine I take keeps my lab results range I still feel a shadow of my former self. I was hoping to trial t3/t4 combination therapy.
I personally would challenge the evidence, you have to create an argument for yourself.. It's totally wrong! Or as others have suggested self medicate but I'd recommend documenting your journey and if it works then take it to gp and endo as evidence
Get tested for Vit B12/Vit D/Iron to make certain those are at the correct levels. All of them can and will affect your thyroid.
Lack of B12 causes brain fog and fatigue and a host of other symptoms which appear to be thyroid symptoms.
Overdoing exercise causes problems with the thyroid. Do a search for a blog about overexercising causing problems with the thyroid. Some well meaning woman tried to exercise her way to better health and ended worse off.
Liver problems cause may lower T3 results too.
I attempted to take T3 three different times and it didn't work for me. My body hates the stuff. My T3 circles the drain though. I'm hope taking more B12 helps me and my thyroid.
'None have demonstrated the benefit of T3 replacement over T4 replacement when the patients are properly blinded to treatment arm.'
Am I going crazy? Does that actually mean anything? What is a 'treatment arm' and how do you become 'blinded' to it?
Yes, it sounds very much like a threat to me. Prescribe T3 at your peril!!!
Adequatly replaced with a T3 of 3.9??? Makes you Wonder if they really know what T3 is. Sigh.
"Treatment arm" - the particular treatment (eg using medication A or B or C).
"Blinded" - as in blind testing where the patient doesn't know which medication (eg A or B or C) is being administered. "Double blinded" (as used elsewhere in the letter) - where neither the patient nor the person administering the treatment knows which it is.
Well, not only is that gobbledegook, it's down-right lies!!! They really do take us for fools! Why can't they just say what they mean in straight English? Or are we supposed not to understand.
Thank you, Knotty, for that translation. How did you know that? lol
Hugs, Grey
My translation ability? Been around, I suppose.
I'm not defending the views of the letter writer but he was writing to a GP for whom it would not be gobbledegook but fairly basic medical research terminology.
Good point.
So tjkj, how did you get hold of the letter? Did your GP give it to you? And what did he say?
It never fails to amaze me the lies that the BTA will tell!!
I did not add the last sentence of the letter as I forgot but this is what it said-
"Needless to say that they were not impressed with me when I explained that I was not keen to practice non evidence based medicine and embark on a slippery slope to the same fate"
This is from an endo at north Devon district hospital in Barnstaple.
I am disgusted by this letter and feel he is a very ill informed and inflexible doctor who really is not willing to look at other ways of treating thyroid conditions.
I don't blame you for being disgusted. It is disgusting! Non-evidence based médicine indeed! So I'm just imagining that I feel better on T3, am I?
If they never do the proper studies then they can dismiss all evidence gleaned from patients as anecdotal, and therefore of no value. And if the patient insists that their experience is valid then the patient is just an irritating waste of space who is probably mentally ill as well.
Where can we read these double blinded randomised controlled or whatever they are called studies?
Google Scholar is good for finding studies :
Unfortunately you have to have at least some idea what you are searching for and you have to wade through a lot of links which are behind paywalls. But it does cut out the stuff from people flogging supplements or miracle cures, which is always helpful.
So is PubMed - and there is a post of mine giving a brief introduction to it:
healthunlocked.com/thyroidu...
Rod
Thanks for that, Rod - brilliant link! I always thought there must be more to Pub Med than I was getting out of it.
Thanks for reposting that, Rod. Very helpful.
How did you find your 2 year old post? I can only go back 5 months, there's no see more link at the bottom of the one page of posts I see.
Ah! I see. Things keep changing. At one point there was a "page index" bar at the bottom of pages such as "My posts". Another time, I saw that the URL in the browser address bar had a number at the end, and I chose a larger number than the one displayed! Kept increasing it until I got to my first post.
This time, however, no magic except that my brain managed to think of some words and use the general search facility.
I actually have something like by first two years of posts all downloaded and formatted as a PDF. Must keep doing that so that I have a record of my posts. It is dashed unfair if they make them unfindable.
The other day I posted a link to my very early post about treating with raw thyroid in London-derry way back when. So some of them do still have some interest.
Rod
Rod, my URL simply says healthunlocked.com/Clutter. Stupid new site. I would have bookmarked some posts if HU had warned they're so short of server space only 4 months worth of posts can be accessed 
I'd like to see those studies and how they were done.
Speechless!! I'm not on T3 and don't even know if I need it but it just makes you so angry!!
What an utter fool to be writing his own personal thoughts and making threats to the GP in such an open manner! Stupid or what?? PLEASE tell me you'll follow it through and let him know how unprofessional the letter is, ask for evidence, research references etc...
Keep us all posted!
Actually why not copy and past some of the comments on here (kept anonymous of course 
and post them off to him!!
tjkj69
that's absolutely outrageous,,and to think these pompous endos are getting paid lots of money to write , that sort of letter...
I think they must all belong to the 'Look how important I am club- I can do as I please !!'
clearly they do anything they can to push the patient back to the Gp so they have less work with the patient and more money!! I must admit the letter from my endo disgusted me telling my gp now that i was optimally doesd on 50 mg(i wasnt),, after hed advised one test ,, hed push me back to my gp ,,job done!
thankyou for sharing
Regards
Astro
Deartjkj69
Thankyou for sharing that.
Thats absolutely disgusting that endos think they can get away with writing some thing like that and get away with it. My pompous endo said i was optimally dosed on 50 mg(which i wasn't i was very ill), he suggested one test , which he got his minions to do , and then said that if the test was ok he would duly hand me back to the gps care and put me on clonodine as he didn't think any of my symptoms were hypothyroid...but menopause,,!!
I really think they do as little as possible for the maximum wage and think that they belong to the 'Im in the Elite endo club and im beyond reproach!!!'
Regards
Astro
MY gp has put me on HRT estrogen, and it's having terrible side effects. I have no if any obvious symptoms of it, certainly no hot flushes, but my Hypo has bothered me for much longer. It's a cop out. Will give it 3 weeks!! Then liek most on here back to square one and prob self medicate.
I have a very supportive gp and she receive a letter much the same the endo refused to see me
I would agree that a formal complaint to the hospital would be worth doing. If you feel you are up to it. What he's written is unethical, especially inferring that the the "private practitioner" who prescribed T3 was struck off because he prescribed T3 and not for anything else. It's a clear threat to the GP he sent the letter to.
Also he ignores studies that show T3 works for some people (like the gene study) and ignores that T3 is prescribed for hypothyroidism on the NHS by more than a handful of endocrinologists & doctors.
Well the plot thicken. I've just had a call from my GP asking how I felt about the letter. I told him I was disgusted by it and would like the references to the studies the endo intimated existed. He told me to be assure they did exist but could navigate me to them. I asked if he knew any doctors struck off for prescribing T3 and he said " they would be from North Devon because we live in a are with very SENSIBLE doctors who would not consider prescribing T3 in a month of Sunday!!! I asked my doctor how he felt about the letter and he said he completely agreed with the endo!
I'm going to track down pro T3 research and send it to them both !
Find another GP and report him. To the gmc he should be struck off for ignoring a proven treatment
I would like to know who the endo is. It's no good when we cannot warn others about t****
I think you shd def change gps. I'm never sure what the point of complaining about des is, so much energy and no one will care or act, it will only make u angrier. I was once nearly killed by an operation where I nearly bled to death and was left infertile, I tried to get info for own peace of mind, they just closed ranks, so something like this? Don't waste ur energy.
Am I to gather that there is a list of friendly helpful endos and unhelpful somewhere? How can I find out who is in my area?
It just go's to show who we the public put (most of the time) blind faith. I myself switched to NDT at the end of February (was on 200mg thyroxine) - I haven't felt like this for the last 9yrs, .
What I'm saying is a lot of them are just full of mis-informed information - where does it come from? Pharmaceutical corporations who don't care about the people just the £ sign!
(Oh btw the 2 Dr's which were struck off were prob in med school with him/her) lol
Ouch !! What a cold bastard. That was a definate threat/ warning @ the end.
Sorry can't seem to read letter, is there a way to get larger copy.
Don't think so bridiesmum sorry
Can anyone provide list of understanding endos london
Ans Surrey, also the rest of uk.
Bridiesmum, email louise.warvill@thyroiduk.org.uk for a list of recommended endos.
Many thanks for your kindness, great site.
It is incredibly frustrating. These people speak as if they are experts and they haven't even kept up with the latest research. It is completely unscientific and yet they are the ones with the prescribing 'power'.
I've been in exactly your position - it absolutely stinks! I found the word POLYMORPHISM. It's where the body is definitely unable to convert T4 into T3. Due to genetics from either one or both parents. There are medical papers out there (somewhere) which is now proving this fact. Very best of luck
lola1956 in reply to
Thanks I've looked this up and well done it's very interesting
Wow...what about Paul Robinson?....T3 only ....his book 'recovering with T3'...I'm disgusted ..my Endo is useless...thinks Graves Disease goes away when the Thyroid is removed...
So why is my TPO and TRAB still very high even through I had my thyroid was removed over a year ago...his answer to that was...don't worry about that the antibodies have nothing to attack now....oh....really ...so why is my TED of 4 years still very very active
And most of body in crisis...far too difficult to explain on here...
But at least I talked him into prescribing T3 combo with Levo
I see my eye consultant tomorrow...after spending last week in hospital very unwell indeed....he won't know what's hit him when I turn up with my paperwork
Now I may have PA..B12 def...as my Endo tested other anti bodies and found out I have
Gastric Parieal cell antibodies....so yet another brick wall to climb...
My Endo is now denying me B12 injections...another long drawn out story....
Sigh.........
(((Hugs)))
all I can say is thank goodness for all the help I have had on this site from people who buy T3 from Mexico, its not right that we are forced into this situation of self medicating from sources abroad, but for my health and well being thank goodness for it.
ha ha a very insecure endo
Just to say, without naming names, but as this is Devon we are talking of here.....I obtained T3 via an endo at Derriford Hospital in Plymouth, who told me that he believed all the endos there were happy to prescribe it (that was about 18 mths ago). Also was happy to let my GP give me T3 only prescriptions.
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