I've just come back from seeing a consultant endocrinologist for the first time who said the 'agreement in the South East' is that T3 probably just has a placebo effect and she wouldn't even acknowledge my low T3 conversion blood result and said the test was a waste of time. She said my thyroid function tests possibly showed a problem with absorption (of the 125mcg I've ended up being on after 10+ years since initial diagnosis by my GP!) and to take my T4 at night. She said my hypothyroid symptoms were nothing to do with my thyroid, to take antidepressants and see a cardiologist about my slow pulse! That's it. I'm devastated and I wish I hadn't gone. Has anyone else experienced this and what did you do?
Endocrinologist appointment- very upsetting - Thyroid UK
Endocrinologist appointment- very upsetting
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TracyR26
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diogenesRemembering
T3 a placebo! Well, i've heard everything. It just happens to be the hormone that controls human health! I've heard ignorant statements about this on this forum before but this takes the cake! This endocrinologist is not fit to practice, and that is not an exaggeration. I simply marvel at the utter incompetence. Get another opinion from someone with an IQ in double figures!
Thank you diogenes for your reply. I have to say I was a bit speechless but I didn't have the knowledge to counter what she was saying. I'm going to learn though and as I do I'll gather evidence to counter her with when she wants to see me again in 7 MONTHS time!
I haven’t heard anybody have a good word to say about endos. They all seem to be good at upsetting people and making them feel worse than they already do. The ones I have seen are arrogant and full of their own importance. No compassion whatsoever. If they knew how we are all feeling then perhaps they might be a bit more caring. All we want is to feel well again. Is that too much to ask?
I have had shortness of breath and constantly having to clear my throat. I get quite distressed sometimes when I can’t catch my breath. Don’t seem to get any answers until I put a message on here. There is good advice and support. That’s what we all need. I am in the process of gathering evidence to take back to my Gp. Good luck with your next visit to endo.
We do see a trickle of people happy with their endocrinologists.
To be fair, the two I'm seeing now are receptive, balanced and helpful; interested in and not dismissive of my private blood tests and DIO2 results, more than willing to monitor my T3 use; and not at all arrogant. I've seen many all around the country over the years, including Professors, and never had an arrogant one, or been upset by - the worst was an Endo with a personality deficit but that wasn't his fault, it just made the appt a bit heavy going.
Lucky you!
The endo I saw kept rolling her eyes and actually laughed at me when I outlined my concerns and continuing symptoms. How I kept my cool in the face of such rudeness I don't know.
Well I tend not to judge professionals on how nice they are, I'd have intelligence and expertise over niceness any day. But I was simply offering a balancing view to "all seem to be good at upsetting people". I have hypothyroid friends and know others who don't hang around patient forum, who are perfectly happy with their treatment both primary and secondary; but because they aren't posting and saying so, there can be a distorted view represented in forum such as this. In turn that can have a negative knock on effect for people who are looking for both hope as well as help.
We do need a balanced view but those who are hanging around a patient forum are doing so because they're not receiving the help/correct medication they need to feel well. So it would seem most of those are going to be people new to this forum or those who have been let down by doctors and/or endocrinologists and the rest are those who are happy to offer help and advice.
I had difficulty swallowing and very husky voice which one thing my ending picked on and referred me to ENT. It common for people with Thyroid issues to have a "silent reflux" seen the ENT and he confirmed after putting small tube with camera to see my throat. You constantly feel the need to clear your throat sometimes with phlegm and it feels like a lump in your throat. Given anti reflux meds and it really help me. Don't sound like I am chocking constantly any more.
I would go for a second opinion its your right, Im just going for my second opinion as my endo who I thought was ok is only a prescriber and doesnt seem to care if you have any symptoms and started on about the TSH, my GP was cheesed off as she had copied him in my conditions and he never even bothered to read them so she offered me a 2nd opinion she said choose wisely as I dont want you driving 100 mile for same bad treatment.. ..
You could alway email your Endo on points @ send her Lots evidence and ask her to answer all the points you make numbering each one , so she will have to answer all of them and not answer a few and miss some out .. That way you will know what she is willing to do and her beliefs ask her to reply to you within ten days and see what she has to say !
If she still isn't interested why waste your time with her
get a 2nd opinion its your right with the NHS ! find a decent one who cares about symptoms and will prescribe, you may have to travel but its got to be worth it
You could respond by letter, copying it to your GP but you might be wasting time and energy. How can the Endo suggest antidepressants without a diagnosis of a mental health condition which the Endo is not qualified to provide?
Anti-d's can contribute to osteoporosis according to NICE (don't know your age but it could be a risk to women of pre-or post menopausal age). So, it's not a suitable solution to hypothyroid symptoms.
If you have problems absorbing levothyroxine then you need to know what is causing lack of absorption so the Endo should investigate or refer you for investigations. If you already take levothyrxoine on an empty stomach and leave at least an hour until eating or drinking anything except for water then switching to night probably won't make a significant difference although it could be more convenient. If you have absorption problems it should be apparent in your TSH results as TSH would rise.
It might be helpful to see a cardiologist, however, the cardiologist I saw said the heart needs enough T3 to function well and told me to see an endocrinologist.
Maybe you need to forget the so-called experts and do what you think is best? I wish you luck in getting better advice and help.
Thank you for your reply Nanaedake. I was thinking that I want to bypass all the fighting and get help elsewhere hence my coming here but I do want to challenge what she said as well! She said there's no medical evidence to support supplemented T3's usefulness, which I can't believe is true..... I have recently found a wellness clinic who has helped so much already and who I'll continue to see but I want to trial T3. I don't know how to get it or what dose to start on but I can see from other posts I need my blood results so I'll get them from my GP next week, along with the ranges used, and come back on here. I did take my T4 at night some time ago but then I started taking L-glutamine for leaky gut syndrome at night and I didn't want to compromise my T4 so I changed back to mornings. I feel a bit calmer now I'm on here so onwards and upwards!
I don't know whether there is conclusive evidence that supplemental T3 along with LT4 is better than LT4 alone but the scientists in this community would know better than I. I believe there is evidence based on meta analysis that T3 is not harmful. In any case, it's present naturally in our bodies so clearly we need it and we need enough of it.
T3 is what T4 gets converted to and absorbed by your body! Your thyroid may produce lots of T4 but if you are not converting it well to T3 then you are still short of thyroid hormone as you don't have enough to a absorb. My endo said the picture is much bigger than the narrow view TSH & T4 only can offer!
My endo told me that there is no proven efficacy for T3 (toing the party line), but after I told him that there has been no improvement in my symptoms for 5 and a half years on levo, he agreed to a trial of 20mcg T3 and asked me to reduce Levo to 100mcgs from 150mcgs. It was like a lightbulb went on and I had increased energy and reduced fatigue - made little or no difference to my weight though. When I went back in April, he again repeated "no proven efficacy unless you have a polymorphism" Think he was trying to baffle me. I had however, in the meantime had a DIO2 test, which showed I'm heterozygous for DIO2 gene (means I may have problems converting T4 to T3). He asked how I knew and I told him through private testing as NHS won't test. He said I could increase T3 to 30mcgs a day and leave the levo at 100mcgs. I have to say that this increase did not work for me. I started to develop mucin in my tissues so I have reduced back to 20mcgs in addition to the Levo. See him again at the end of the month. He also said T3 only improves quality of life but makes no difference to the "numbers". I told him QOL is what I want!!!!! I despair! He's about the 8th one I've seen, as I see a different one everytime I go to hospital. He's the head of the department too!
What a nightmare! Would love to ask where this happened-I don’t believe she’s a doctor at all!
It was my local hospital, William Harvey in Ashford Kent, where according to her secretary, moral has never been lower.
helvellaAdministratorThyroid UK
That is a dreadful state of affairs.
My facetious side wants to ask if T3 has different effects depending on where in the country, or world, you are?
If it were a placebo, would it not be her duty to put in a report to the MHRA about a defective or fake medicine?
Would she take a few tablets right now, in front of you, to prove it is a placebo?
Sorry to hear of your experience TracyR26 Bad enough that she said it at all, but presumably she meant that the benefits of exogenous synthetic T3 were as a result of the placebo effect; because it would be too horrific for words if she believed that endogenous triiodothyronine has no purpose in the body.....
With such unknowledgeable endocrinologists like this the NHS may be saving money on T3 prescriptions, but by passing the buck to cardiologists and antidepressant prescriptions surely this 'saving' is now going to be spent elsewhere, and putting stress on other specialist services. So frustrating... thank heavens we have this open forum!
They are saving a packet?. My t3 has been halved. T4 increased by 50 mcg. I'm feeling the profound effects of this. I've been signed off work. My GP wants to persevere. Ok, but if I'm unwell I can't work. This, she understands. So the amount of time I've been off would pay for my t3 treatment for a year. They're paying me whilst off. They're paying for a replacement whilst I'm not there. I work for the health service. Lose, lose. Joined up thinking?. Um, nope.
I’m so sorry about your experience TracyR26. Especially if you went full of hope that the endo would want to help you to recovery. The references to mental health I read so often in these posts particularly bothers me. To suggest that someone is mentally ill because they are experiencing the multitude of symptoms of this horrible disease is insulting, reckless and inexcusable. It gets the doctor off the hook if they can point to something like depression which cannot be proved by a blood test or scan as it is a state rather than a physical issue. The prescribing of powerful anti-depressants and other such drugs like smarties when they are often addictive and have horrible side-effects borders on abuse. It also is a way of denying the symptoms we know we are experiencing. We are all nuts - it’s all in our heads; we must be attention-seekers, doctor-botherers; hysterics. Your treatment by this so-called professional is unforgivable. Some of them don’t even appear to have the sense to google the thyroid the day before they see you to appear a little knowledgeable. T3 a placebo - it beggars belief. I agree with Helvella, I’d love to challenge this ‘endo’ to down 20 tablets in one go. After all, the effect is all in your head... that heart roller-coaster ride isn’t real...
SlowDragonAdministrator
Sadly far too common......but there are enlightened endocrinologist out there
There's a endocrine centre in Kent .....Maidstone I believe that offers DIO2 gene test on NHS and T3 on NHS prescription
See Improve Thyroid Treatment campaign on Facebook for more information
Taking Levothyroxine at night can give significant benefit so it's definitely worth trying
Many if us find it much better
Always take Levo on empty stomach and then nothing apart from water for at least an hour after.
verywell.com/should-i-take-...
Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients
There's no information on your profile
What are your most recent vitamin D, folate, ferritin and B12 results and ranges
Low vitamin levels are extremely common and need regular testing and supplementing to improve
Do you have Hashimoto's also called autoimmune thyroid disease diagnosed by high thyroid antibodies?
For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins
thyroiduk.org.uk/tuk/testin...
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
Is this how you do your tests?
Suggest you change to nighttime dose and retest full Thyroid and vitamin tests in 6 weeks
Report her to the GMC she shouldn’t be allowed to practice
Interesting, I recently listened to an interview with a pcychiatrist who said only when she had Hashimoto with bad depression did she realise that large proportion of her mental health patients actually needed an endo and not a pcychiatrist! I was so badly depressed (felt the only option is to end it all) for 4 years but after eventually another GP put me on Levothyroxine and eventually reaching my correct dose, I felt like a normal human being, like the one I used to be and had long forgotten. I stopped the antidepressants. It has been 6 months without needing them, and this with the extra added trauma of loosing both my parents last year... also had fast pulse rate ( my heart used to race like it will fly out) had a heart stress test and and a scan but nothing wrong. Now I also know that before hypothyroidism properly sets in, it is common to be hyperthyroid which can cause fast heart rate. Now I no longer have such episoded. Id drives me crazy how all doctors act like horse with blinders and just look at their own little box and never think that these ovelap and one cross over. So your endo should not be so arrogant. In fact the admin on forums like this (if they can) should invite some endo's to comment.
Is that interview available online?
I suspect many would find it interesting to listen to.
Ask for a second opinion but research Endo , ask on here for the list of sympathetic Endos , don't go to a useless one again.. what a waste of your time!
..
My endo was saying to me about Placebo affect for a month then thats it, that won't help in anyway butCognitive and not so brain fogged if it was that alone I would of tried it I was just existing before on mono T4 for 15yrs of hell .
I was definitely trying it as felt so ill and bed bound so wasn't leaving without it, he tried to scare me with heart AF i wasnt listening , I said " if it gives me 1-5 years of a better life it will be much better than 20 or more crap years, its quality i'm after not quantity and tbh if left how I was I may as well been dead as i was struggling and hurting and really fed up i had no life at all I couldn't be bothered to even make a cup of tea that was a real struggle, only had energy to eat micro dinners , i wouldn't of coped real cooking who in right mind wants to live like that !
The next day when i took it, I felt alive again, i could get up from bed without screaming in pain, all my so called fibromyalgia pain went ! , my heart burn ( so called Hiatus hernia: ) i had had for 15 years went,
i felt like skipping where as i had trouble walking and used a stick before and now dont !
, i got energy I decorated 3 rooms back to back.
I saw colours, again my mood lifted it was like I felt years ago before coming hyperthyroid in teens sub thyroidectomy which i was left hypo years till diagnosed when i was 40 with hypo Im now 55 so missed loads of life because ignorant DRs ,
i no longer stared into space for hours on end and when i got asked what i do all day I really did not know so nothing I think, was a struggle to clean one room a day if i could even manage that as i had to really push my self to do that and then i was back in bed exhausted
I didn't have to force myself to do things , On T3 II wanted to do them I like being busy doing things I thought i had become ultra lazy but just was on wrong meds T4 mono
I used to be very energetic i had become a sloth on T4
I did the sweetcorn metabolism test before having T3, that took 6 days to go through me with T3 it was out within 12 hours ,,hows that placebo affect?
hows any of it placebo ? i was bed bound for years before getting T3 !
my gums came alive my teeth I no longer wanted to pull all my teeth out dentist said a huge improvement since, my frozen shoulder disappeared !, when i ate food i no longer went a deathly grey white coloured and didn't have to get into bed straight after to sleep, i used to have to avoid eating in day because thats how eating made me feel. I went pink in cheeks and felt cosy after eating thats something I hadn't felt for years.. ( My mate said I looked lowing as before I looked like i was about to die after eating.... So if all this and much more is a Placebo I will eat my dog shite lol .. Ok its not as brilliant as the 1st month but the body was probably in shock when them cells had been with out so long how would these drs know how we feel on T3 they have never had to suffer like we have when T4 doesnt work for us. unbelievable and in honesty on their behalf they are Ignorant Arrogant ass holes x
I still think I have room for improvement as I get bad days , but now at least I do get good days if not some days good hours thats a big improvement in my life on T4 mono x
Feel quite emotional reading your post. I get what you're saying. Thank You for sharing ❤
I am so sorry for what you have been through. It's heart breaking to read your sorry account. It beggars belief that you have been left so ill, for so long!
And ultimately, we all know, if T3 still cost tuppence they’d be happy to prescribe it. If the price of T3 suddenly plummets and the price of Levo soars, guess what doctors and endos will be telling us all then...
Yes, sorry that's why I never visit the GP or endo but just self medicate. We are already feeling low so this is so upsetting why bother with it,
I think that knowledgeable endocrinologists are a rare species!
Karen
yes very rare I was lucky saw a prescribing T3 Endo but he wasnt a listener, I am waiting for a referral to one I have picked to hopefully get me back to 100%,, I live in hope 
I have also found a very good GP who listens so with a good gp and a good Endo as my GP said with her the new Endo we between us can make me well again,, so im happy about that, that only took 16 years having diagnosed hypo to get good Drs... xx i wish you all to find this xx
Hi TracyR26 where are you ? we are off to see a endo on wednesday hope it is not the one you saw.We had a similar meeting a year ago the registra said t3 would make me go mad,
What a ridiculous thing to say! Sounds like he is completely bonkers!
OMG! I think he needs reporting for that comment that is way out! what a complete Eejit he is x
A placebo??? After 32 years on Thyroxine only for low thyroid, I was recently put on T3. I expected absolutely nothing as I now have several chronic conditions. Within a week I was feeling a little less exhausted and the brain fog lifted a bit. I now feel a bit more able to cope with the other health issues. Maybe I would not have so many health issues now if I had been properly medicated over the years!
Doctors do not want to prescribe it due to cost. The NHS pays a high premium for T3 so it can get other medication cheaper.
Oh, by the way, this affects women largely as women mostly have low thyroid function and of those who have it, mostly women need T3. It is not right that we are discriminated against in matters of health.
I feel for you and hope you can get help soon. Good luck.
yes isn't it just and let T4 not work on them and hope they get a crap dr who ignores everything they complain about and after a long wait they get an Endo who isn't into prescribing alternative treatment , plus they get loads of symptoms and end up on a huge carrier bag of meds all that do not work very well and dont forget the anti depressants that won't work as its not depression thats causing them how they feel xx
What things to say!!
if what you say is true then it seems to me that your Endo saying that for 1 of 2 reasons.
Reason 1) - its a flimsy lie to comply with a directive from the CCG to de-prescribe as many patients as possible. If so, then this Endo is not Fit to Practice. Doctors have a duty to be honest with their patients. Domain 4 paragraph of Good Medical Practice says of a doctor:
"You must be honest and trustworthy in all your communication with patients and colleagues. This means you must make clear the limits of your knowledge and make reasonable checks to make sure any information you give is accurate."
gmc-uk.org/ethical-guidance...
.
the CCG it self may be not following guidance from NHS England copied below:
Advise CCGs that prescribers in primary care should not initiate liothyronine for any new patient
Advise CCGs that individuals currently prescribed liothyronine should be reviewed by a consultant NHS endocrinologist with consideration given to switching to levothyroxine where clinically appropriate.
Advise CCGs that a local decision, involving the Area Prescribing Committee (or equivalent) informed by National guidance (e.g. from NICE or the Regional Medicines Optimisation Committee), should be made regarding arrangements for on-going prescribing of liothyronine. This should be for individuals who, in exceptional circumstances, have an on-going need for liothyronine as confirmed by a consultant NHS endocrinologist.
england.nhs.uk/wp-content/u...
Reason 2) - the Endo is not suficently educated to see thyroid patients. It is well established that T3 is the active hormone. Even if the Endo meant T3 taken by the patient, s/he is still wrong. There is plenty of research to show that T3 taken by a patient at the correct dose for that patient resolves signs and symptoms.
The GMC says of a doctor
"You must be competent in all aspects of your work, including management, research and teaching.
and
You must keep your professional knowledge and skills up to date."
gmc-uk.org/ethical-guidance...
Further the British Thyroid Association advocate prescribing T3 for those patients. They say
"Patients already established on Liothyronine and experiencing symptomatic benefit should be allowed to continue with Liothyronine treatment prescribed in primary care. Abrupt change in treatment may impact negatively on well-being. Changing to Levothyroxine therapy should only be considered if the patient is not experiencing benefit from Liothyronine and any change should only be made following informed discussion with the patient and, if necessary, advice from an endocrinologist.
For patients with hypothyroidism who are not on Liothyronine but wish to be treated with Liothyronine, the principles guiding decision-making should follow those outlined in the BTA statement. Combination treatment with Levothyroxine and Liothyronine should only be initiated and supervised by accredited endocrinologists.
Patients experiencing symptomatic benefit on a combination Levothyroxine and Liothyronine regimen should be able to continue such therapy prescribed from primary care."
Additionally, the Endo has not followed the Code of Practice in the GMCs Consent: patients and doctors making decisions together
gmc-uk.org/ethical-guidance...
If patients have capacity to make decisions for themselves, a basic model applies:
The doctor and patient make an assessment of the patient’s condition, taking into account the patient’s medical history, views, experience and knowledge.
The doctor uses specialist knowledge and experience and clinical judgement, and the patient’s views and understanding of their condition, to identify which investigations or treatments are likely to result in overall benefit for the patient. The doctor explains the options to the patient, setting out the potential benefits, risks, burdens and side effects of each option, including the option to have no treatment. The doctor may recommend a particular option which they believe to be best for the patient, but they must not put pressure on the patient to accept their advice.
The patient weighs up the potential benefits, risks and burdens of the various options as well as any non-clinical issues that are relevant to them. The patient decides whether to accept any of the options and, if so, which one. They also have the right to accept or refuse an option for a reason that may seem irrational to the doctor, or for no reason at all.2
If the patient asks for a treatment that the doctor considers would not be of overall benefit to them, the doctor should discuss the issues with the patient and explore the reasons for their request. If, after discussion, the doctor still considers that the treatment would not be of overall benefit to the patient, they do not have to provide the treatment. But they should explain their reasons to the patient, and explain any other options that are available, including the option to seek a second opinion.
This model was made a legal requirement in the case of Montgomery v Lanarkshire Health Board 2015.
I would make a formal complaint to the CCG and the GMC about this doctor. I would also seek a second opinon from a better informed Endo as diogenes said.
Well, that’s what my Endo told me!
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