Finally after many months of waiting to see an endocrinologist I have been left feeling let down and no wiser. I was diagnosed last year with an underactive thyroid and referred by the doctor. I was looking forward to seeing this endocrinologist as I really wanted something done about it. I was in for disappointment though. The endo was clueless as to why I've gained a ton of weight in a short time without trying, also couldn't tell me why I have 3 large visible lumps in my neck, also didn't have a clue why I'm constantly fatigued and cold to the bones. He couldnt explain also why, although I have been pushing myself to exercise every day, eat rabbits food and rarely drink alcohol, I am still out of shape. He constantly smirked at me while talking to me, as though this was all one big joke to him, showed me some blood test results dating back to April to make his point that I'm ok, refused to have the lumps investigated, he told me the lumps in my throat were FAT and point blank rejected my request for a scan. He bluntly told me that I'm just looking for something to pin the blame on for gaining weight. He examined the lumps and told me that what Ive been thinking is an enlarged thyroid is just a blob of subcutaneous fat. I'd like to know who the hell puts weight on in their throat like that. He sent me away without any real answers, and based all his findings on outdated blood results. I had soke blood tests done on my way out but im not expecting any information back as they are so sloppy. Terrible way to be treated by 'medical professionals' YET AGAIN but that's just normal for me. They never take my problems seriously.
Not taken seriously by Endocrinologist - Thyroid UK
Not taken seriously by Endocrinologist
Is he a diabetes specialist? Some endos are and don't know a thing about thyroids.
I'm afraid that's the attitude of many endos because, truth be told, they know next to nothing about thyroid. I know the title - endocrinologist - suggests they know all about the whole endocrine system and all the hormones in it, but they don't. The vast majority of them are diabetes 'specialists' and from what I've heard, they're not very good at that, either. I've seen about five or six endos, and they were all rubbish. Some of them were nice people and listened - even prescribed T3 - but none of them really had a clue about thyroid. I would never go to see another one, waste of time - and money!
They just cannot accept that anybody can put on weight without over-eating, and therefore the patient's fault. And, yet, so many hormones can cause weight gain when too low or too high. You'd think they'd know that, but they'd far rather be patronising and blame the patient, that's much easier than actually doing your job!
So, don't take it personally, it's just the nature of the beast. I expect he treats all his patients like that. It's how he manages to get away with it that I don't understand.
We are at their mercy and in a dark place & rather vulnerable when hypo symptoms 🤷♀️ but what can one person do. There are many experiencing this negligent delivery of endocrine
A lot of us end up self-treating because we know more about thyroid than these so-called specialists ever will.
Maybe we need a medical Me Too movement, similar to people who were sexually assualted or propositioned in Hollywood and eIsewhere.
I'm not saying the experience is the same obviously or as life changing but its no coincidence that many of us have felt guilt, anger, shame and even questioned our sanity after being exposed to one these doctors. Its also no coincidence that hypo/hyper is primarily, but not exclusively, a female complaint and medical misogyny is legion.
Its a sad fact that when patients complain its too easy to dismiss them as mentally unstable, or hypochondriacs, we all know the medical fraternity closes ranks. As recent high profile cases have shown, from the historic blood transfusion scandal to vaginal mesh, there is a lot of power and clout when victims get together.
At the very least I'd like a list of unsympathetic, unhelpful Endos and doctors kept by Thyroid UK so people can check before they have an appointment. Its obviously difficult within the confines of the forum as HU have to be extremely careful. Nothing ever changes if we just go with the flow.
But maybe some sort of feedback system of both NHS and private doctors could be maintained and members could email Thyroid UK. Even just a rating system using 1 to 5 stars. Just an idea.
Sounds a plan!!
Good one 👍🏼👍🏼
Was this NHS or private. I'd be very tempted to complain, what an arse. Even if he was clueless then fat shaming you and blaming you for weight gain is extremely unhelpful and tantamount to bullying. Sounds like a real dud.
Maybe Thyroid UK should start a list of unapproved, useless doctors to accompany their approved list. So we can avoid these clowns in future.
NHS. I really want to complain since I was quite upset afterwards and felt in despair. I just want to somehow get myself sorted out first, then I'll deal with him.
I would urge you to, after all you wont ever see him again and if no one ever calls these people out for their attitude then he will carry on and do it to others.
These doctors walk around with a God complex and are far too used to deferential treatment from both staff and patients. They think they are untouchable. At the end of the day you pay his wages and everyone deserves to be treated with consideration and respect.
After all if the boot was on the other foot and you had been rude, aggressive or unpleasant towards him you can bet you would blacklisted or there would be repercussions.
👍🏼
Yes. We must complain. At least we have done our bit
Hi Foxxyyh,
It may be an idea to contact one of the admins directly about your experience with this endo; if he's on the list of helpful endo's he should be removed.
Wow. I'm so sorry you had to go through that. I have absolutely no experience with endocrinologists as I've never seen one, but this post has been very enlightening and I'll keep it in mind for future reference 😳
It baffles me how some of these consultants actually have their jobs.
Agree but they aren't trained. Maybe they are in diabetes
I'm so sorry he's made you feel like this , have just had an alarmingly similar experience myself
the breath taking arrogance of these so called professionals needs to be called out .
They are paid to help us supposedly not fob off
I sympathise. The endo I was referred to, was a robot too.
I had put on 3 stone in as many months and all he offered was to refer me to a dietician to "teach me about controlling my appetite"!
I wanted to slap him 🤬.
I wanted to slap him 🤬.
Stand aside, bae, let me lump him for you...
teach me about controlling my appetite
You should have offered to teach him about misogynistic claptrap. Tool.
How did you go on?
that was awful, how arrogant ( it's even pathetic )
I realised that no help was to be gleaned from the NHS and managed to get an appointment with the much missed, Dr Peatfield. I was able to order my own NDT (Armour) from USA for a while until I could no longer afford to continue and then I began self sourcing and self funding T3. I've been on a combo of NHS T4 and self sourced T3 for a few years now.
My GP has no idea.
I try and keep him out of the loop and I vowed never to go near an endo again.
Understand completely. Pls do you mind PM me where to get T3 ?
Only concern is if you got into a hospital situation might it be right they see what you take?
Just out of curiosity grumpy how do you manage NHS blood tests/ reviews. Is your TSH suppressed on combi therapy? If so how does your GP react?
I am on Metformin because of my diabetes (caused, imo, by years of insulin resistance caused by undermedication of levo) and Metformin works along the HP axis and makes TSH appear suppressed. So, GP cannot tell my FT3 might be low on combi therapy as my TSH is already really low looking due to the Metformin.
Smoke and mirrors 🤫.
3 cheers for Metformin😁
😂😂😂
I ask because I'm on combi as well, self sourced T3 and obviously my GP remains blissfully ignorant 😆. I was wondering how you navigated the sometimes weird blood test results.
Undoubtedly the time will come when my GP starts hyperventilating about suppressed TSH. Frankly I wish I could tell the NHS to go forth and multiply and not rely on them for Levo. Since managing my thyroid I have felt better than I ever did on just Levo.
I think if my GP even notices my results, he just attributes the weird TSH to the Metformin. And to be honest, they are so ignorant about FT3 as long as it's in range, they don't care. And I test regularly so I keep it in the upper quadrant of the range, where I feel best.I know what you mean about wishing we could dispense with the lot of them.
Yup, me too. NDT and then T3 enabled me to function like a human being again. The less they meddle, the happier I am.
I intend to dodge NHS thyroid tests as long as possible, having a foot problem and balance issues means I can plead ill health. I dont drive so have to walk, I can use them an an excuse as to why I cant get a blood test. They are very unlikely to offer me a nurse to come to my home lol.
I agree. Best avoided as long as possible but at my surgery they have you by the short and curlies because if you don't get your yearly review, they stop ALL your meds. Meanies.
They arent supposed to, what if someone is genuinely too ill to get to the surgery? Like if they've had an accident, operation or they are in hospital. I saw they can limit your prescriptions to 14 days, from 28 but they arent supposed to stop them altogether as that can be dangerous.
They are a law unto themselves. If I could leave and join a different practice, I would. But it's the only one I can use because I live so rurally, there is only this one that covers my area.They are awful in so many ways 😱.
So sorry you had to endure this.
I think a complaint is in order. After all we go to these so-called professionals for help when we are at our lowest. Not for them to be patronising, belittling and dismissive.
How can we all complain
I put a complaint in about mine as I ran out of t3 2 or 3 times when I was suppose to be trialling it , then he just said go back to t 4 , was a waste of time though I think they all stick together
Check out the PALS advocacy service available at NHS hospitals? There used to be independent advocacy services but when the crash came in 2008 they all but disappeared as they were mainly charitable organisations. May be worth checking them out.
Hello hope your well , that was pals I went to but I felt they weren’t really interested, I’m sourcing my own at the moment but thanks for your reply
Sorry, but not surprised PALS not up to scratch. However, check out this advocacy link: conditions/social-care-and-support-guide/help-from-social-services-and-charities/someone-to-speak-up-for-you-advocate/Trusting you get the support you need!
From what I've heard PALS are a bit of a waste of space, too closely associated with the NHS to be impartial and no real power. A bit like asking a student to mark their own homework.
It's the independent advocacy services that stand up for ppl. Like you said, you can't be independent if NHS paying your salary,! Independence is key - but if nothing else then it's PALS or a solicitor unfortunately.
Your right there
Awful. Luckily he had even recognised T3 at all!!!
All about cost isn't it and lack of training
Since Levo took over NDT it's like T3 doesn't exist at all where I live in the UK
That's just so awful.I was diagnosed with graves disease couple of years ago.
Seen an endo privately.
Was prescribed carbamozole and really seemed too mess up my metabolism.
To cut a long story short, once levels were "within range" he didn't really seem interested.
I'm in remission now and have regular blood tests on the NHS via thyroid clinic .
However my results for TSH are up and down ft3/ft4 in range, have been told to restart carbamozole which I have so far refused to do.
Last TSH 0.14 8 weeks ago and am currently just waiting for my latest blood results .
Even though I have graves disease, ever since taking carbamozole and even though i haven't taken them for some time, I just simply cannot shift any weight.
Unfortunately, GP, and thyroid clinic don't really care as long as bloods are in range or alternatively their solution is to take pills.
It's a shame for you, but, shame on him for not doing his job properly too.
I knew nothing about the thyroid before having mine removed and before it was working perfectly a lump had moved my trachea out of place.
I was put onto levo and after just a few months I was 10 lbs overweight. I then joined this site and it's the only reason that I am well today.
I posted, read, wrote everything down and then acted, this was in 2015, so 8 years ago.
I am 78 years old and not overweight, I don't visit Endos, and rarely see the GP.
I feel well now.
What did u do pls?
I was started on 100 Levo before I left hospital That was end of Oct 2015. I knew nothing at all about the thyroid then. After about 6/7 months I was feeling unwell I wasn't offered a higher dose. I had gone from doing Yoga 4/5 times a week, swimming 1 mile a week and walking twice a week 6 miles ish. Now I had to be helped to get up from the floor.
I searched online and found this group as I explained I read and listened before trying something different. Anyway I decided to try NDTs from Thailand. I asked about using it and followed the advice on this site.
After only 2 months I was back to my old self, great.
Looking at previous posts you were self sourcing Levo?
How much levothyroxine are you currently taking
Or did you stop
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Essential to test vitamin D, folate, ferritin and B12
Lower vitamin levels more common as we get older
For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels
What vitamin supplements are you taking
Also VERY important to test TSH, Ft4 and Ft3 together
What is reason for your hypothyroidism
Autoimmune?
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Post all about what time of day to test
healthunlocked.com/thyroidu...
Testing options and includes money off codes for private testing
Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Only do private testing early Monday or Tuesday morning.
Link about thyroid blood tests
thyroiduk.org/testing/thyro...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
Symptoms of hypothyroidism
thyroiduk.org/signs-and-sym...
Tips on how to do DIY finger prick test
support.medichecks.com/hc/e...
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
Please add most recent thyroid and vitamin results
ALWAYS get FULL thyroid and vitamin testing done BEFORE any consultation
Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations
thyroiduk.org/contact-us/ge...
Thank you for the information. I am on 100mcg of Levo now. I buy 50mcg and the doctor prescribes the other 50mcg. I am ok for ferritin as I'm on ferrous fumerate, I also take a vitamin D supplement daily, I am not getting better at all. Trying to get regular blood tests is like getting blood out of a stone. They never get back to me with the results and when I enquire they give me the TSH result over the phone. I have been on 100mcg since March this year and my I haven't changed at all regarding my size ( I don't know how much I weigh as I don't want to frighten myself so I go by what still fits me from my closet, and it isn't much). I've been suffering from chronic cough for the same amount of time I've been hypothyroid, so I'm limited with exercise but I push past my boundaries just to try to lose the fat but it's around my waist and lots of lumps and swellings on my neck and I have a moon face and puffiness on the cheeks. I have no confidence thus I hardly ever leave the house. I explained all this to endo but he was not interested. Basically laughed me put of his office.
I have been on 100mcg since March this year
Just testing TSH is completely useless
so you need to get FULL Thyroid and vitamin tests yourself
ALWAYS test early Monday or Tuesday morning, ideally before 9am, only drinking water between waking and test ….and essential last dose levothyroxine 24 hours before test
come back with new post once you get results
Make sure you test BOTH thyroid antibodies and vitamin levels
Exactly what vitamin supplements are you taking
Stop any supplements that contain biotin 5-7 days before test
Hi Foxxyyh,
I totally empathise.
I don’t have any helpful suggestions but I just wanted you to know that you are not alone in this. I only posted a couple of days ago on here about my disappointing experience with an endo.
I am glad you have posted on here and I hope, like myself, having this community to support you helps. Even with that support, in the last couple of days I’ve thought to myself, was I asking too much, am I being unrealistic, is it all in my head?? Please don’t do this, you have been let down, badly. We all deserve to be listened to and treated with respect and dignity.
Do something lovely for yourself today, you deserve it.
Sending 🤗
Thank you. I'm very appreciative of all the feedback on my post. I suffer with anxiety problems, panic disorder etc. I actually thought after seeing him, maybe he's right, I'm just a fatty, and looking for something to blame. But no, in my heart I know he is just a smug, arrogant tool with a bad attitude. I always get lumbered with these types of people. It's par for the course.
If it's face to face it's helpful to have someone with you who can support the conversation, or when you get unanswered!!
Like the politicians!!!!they ramble and divert
so sorry. I could have written very similar post
There must be something we can do about the way we treated regarding this !?
It birders negligence I'm sure. It's sooo insulting
My apptmt just yesterday very similar. He decided it's not hypo after 5 yrs on!!! And taking Levo all this time
but no clue or redirection.! he also dismissed my large weight gain when I asked for real root causes of it...... he didn't tell me how to proceed as t4 over range and t3 still low
He said my recent results weren't in screen fir him to comment! Had them done by gp especially !!
Disgraceful and I said I felt fobbed off and let down so he then said he would need to talk with seniors!!
Diagnosing you without seeing test results? That is medical negligence!
What is the difference between God and an Endo?
God does not think he is an Endo!
He didn't give me way forward as said he couldn't see results but we're done recently so you'd think they were there to see
Iv been told this b4 & I now think it's a ploy. Then to be told he will speak to a senior🤷♀️
Anyway I told him results. Still no comment. Told me I had to listen to him when I tried to converse, then spoke only about other things causing symptoms and the greed line why I got fat 😩
I am sorry to hear this. It's shocking to say the least. From the moment I sat down I could tell he wasn't on the same page as me. Seeing the smirk on his face I could tell he was going to be a jerk about everything.
First of all, "THAT'S not your thyroid, the lump you have is NOT in the area of your thyroid!" he said.
Then talking about my weight I was waiting for him to try to convince me there was another reason behind it. He asked me about my cycle, whether I have regular periods. Being of a certain age I thought I'll nip this one in the bud, I know he's gonna try and blame peri menopause. So I said yes. Buy hey-ho he had an answer ready by letting me know I wouldn't be regular if hypo.
He asked me twice about whether I currently have a job, and when I said no dueto panic disorder he asked me if I'm on anti depressants. (If I'd said yes he'd have blamed the pills for the weight gain). I was honest, said no I'm not. I guess he thinks maybe I sit around the house all day eating junk. He told me also that if I were to gain weight from underactive thyroid it would only be about 4lbs max. Interesting since quite a few people on here have said they've put lots of weight on. I'm SOOO glad I'm not going crazy. I honestly thought the endo would put everything right for me and I was looking forward to the start of a new me.
How wrong one can be ....
He told me also that if I were to gain weight from underactive thyroid it would only be about 4lbs max.
I've heard that nonsense about "only 4lbs weight gain" before. I wonder where it came from and on what basis it is being applied to all hypothyroid patients. Some hypo patients are thin, although most gain weight. So we aren't all the same.
One thing you might find helpful is this thread although it might not be applicable to you.
O please. I understand totally and it's so patronising is it controlling. Yes you know exactly where his questions are leading! I never spoke up till recently. I used terms I never did like 'I'm rather tired of being unheard and fobbed off...... I know this doesn't help or change things and promising myself il just write a letter to express and then switch off- TUK way to go - or you start being angry for something you can't change
I even had a letter back from my letter expressing about no nhs T3 testing, and it merely said 'there is only one hormone therapy'!? I ask you?
So, we need to preserve sanity best we can. Mainly get better with our new found knowledge which incidentally becomes more than these people. 'How would they treat their very hypo parent I wonder'🤔
if I were to gain weight from underactive thyroid it would only be about 4lbs max. Interesting since quite a few people on here have said they've put lots of weight on
Where do they get these “fairytales” from
Loads of hypothyroid patients gain masses of weight
A few struggle to maintain weight
Personally I gained 5 stone over 20 years on inadequate/incorrect thyroid treatment
Since getting correct treatment I have SLOWLY managed to loose half that and still improving
A pal of mine, still very inadequately treated gained over 8 stone and still going upwards
Understand, Iv put on 3 stone & told I'd feel better if I loose some weight😩
My concern is that I didn't need Levo in the first instance as I had a good level but tsh was 5..... now it's 0.8 and that's due to taking hrt. It came down swiftly
So I'm unsure what to do
My T3 always at 4 (3.2 - 6.4)
And this is regardless of taking 75, 100, 125 or 150mg Levo??
So the amount of Levo does not increase T4 my supps are good too, I just don't know what to do , maybe reduce t4 and take small T3
I cringe that I may have taken Levo unnecessarily for 5 yrs!!!
If TSH was 5 at least on two separate tests 8 weeks apart that suggests thyroid was struggling
Graph showing median TSH in healthy population is 1-1.5
web.archive.org/web/2004060...
Have you had BOTH TPO and TG antibodies tested
If both antibodies negative have you had ultrasound scan of thyroid
Iv never been offered a scan just Levo - even though T4 was at a good level
It was as you say struggling but in no time TSH bobbed back to 0.8 after taking hrt
However T3 remains low ( no higher even though Levo increased and T4 went over range)
Common issue to have poor conversion rates
Many thyroid patients on just levothyroxine have high Ft4 but low Ft3
Look at getting same brand levothyroxine
ALWAYS test early morning, last dose levothyroxine 24 hours before test
Getting vitamins optimal
Testing both TPO and TG antibodies
If both antibodies negative….ultrasound scan
Trialing gluten free/dairy free
If Ft3 remains low …..getting small doses of T3 prescribed alongside levothyroxine
Thanks so much
....his high is t3 recommended ?
ps. My antibodies always negative except for once & the TPO was 100 over range.
Supps & gluten free brought in and not had over range antibodies since 🤔. So it's hard to say I'm hashi ?
They haven't even put hypo on record even though diagnosed in 2016 by gp letter
My antibodies always negative except for once & the TPO was 100 over range.
So, this confirms autoimmune thyroid disease also called Hashimoto’s…….even if antibodies drop within range the cause of your hypothyroidism is STILL hashimoto’s
Post menopause conversion often gets worse as well
It was a private antibidy test so nhs won't take into account or test in this area anyway 😔
Iv had psoriasis and vitiligo plus PND and pre eclampsia.
Sorry how do you mean about post menopausal conversion? What gets worse?
Rate of conversion of Ft4 to Ft3 often slows down after menopause
Psoriasis and vitiligo both autoimmune
Having one autoimmune disease makes others more likely
Thankyou. 😊 pls tell gp
I hate to say this as it goes against my feminist principles but do you have a male partner, brother or friend who would go with you to consultations?
There does seem to be strong evidence that these doctors stop show boating and flaunting their own egos and nastiness in the presence of another man. Medical misogyny is alive and well.
As I said it goes against the grain, we shouldnt put up with this crap nor be spoken to with such contempt but this is what we are up against. I was a retiring violet when younger, I was bullied at schoool, but now I'm in my 50's I wont take that sort of treatment lying down.
Any doctor who spoke to me like that would get an earful. I'm too old and life's too short to put up with attitudes like that.
Well said 👍🏼👍🏼
I even had an older chap come up to me in a theatre show sat well to left, he said I was very off putting when I did video ( very short & discreet) and to stop
🤷♀️ i was numbed at that point but as i left at the end i said to him, 'i notice you didn't approach the couple in front or at other side!!! 😊 I enjoyed
I've tried this, Sparkling and the difference it makes is beyond evident; little short of gob-smacking.
No lip curling, shouting, pointed questions regarding my weight, and he shook my husband's hand. FFS, you arrogant buffoon.
That was a good lesson for me, tho. Only did it once and it confirmed all my suspicions/judgements and added a few new ones, none complimentary. Subsequently, I completely ignored him, stopped my levo prescription and await the opportunity (that I hope will never come...) to say to this asshat, 'Your patent abrogation in treating my thyroid complaint does not mean I cannot consult you on other matters.'
Do your job. Be better. Or f*ck right off.
He told me also that if I were to gain weight from underactive thyroid it would only be about 4lbs max
😂 God, I wish.
I currently have 3 different sizes of clothes in my wardrobe. I refuse to throw the smaller ones out as I'm certain that I will fit into them one day when I'm back to my old self.
Constantly living in hope. 🤞
need calling out by us all
Not everyone can go private nor should we need to🤔. If in NW please message me
Endocrinologist, my hero.
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