Hi all, long time no see. I hope everyone is doing well, and thank you for the responses to my last post. It became a little bit overwhelming to have to face everything head on with regards to my illness, so I took a bit of a break from here for a short while and feel better for it
To cut a long story short, I was referred to a Gastroenterologist in April to discuss persistent constipation and bloating since having a TT a little over a year ago. He prescribed some prucalopride which kind of works, but he also acknowledged that my TSH(4.00) is quite high for someone on 200mcg Levothyroxine, so he asked to refer me back to the Endocrinologist that gave my surgery the go-ahead. For the past 2 months I have been under the impression that I am on the waiting list to see my Endo again, only to find out from my GP today, that the Endo rejected the request back in April and says that he doesn't want to see me. I'm...kind of shocked, to be honest, and unsure of how to proceed.
My GP is supportive of me and says that she will happily refer me to a private practitioner if I want to see one, but I'm just stuck on the fact that my Endo was the one who suggested surgery...and now that I need support after having done it, he doesn't want anything to do with me. He didn't even tell me himself that he didn't want to see me...between this and him claiming that I only have problems because I'm not taking my meds, and removing me from his patient list the day of my post-op appointment..I'm just astonished. I didn't even get the chance to bring up wanting to try T3. Where do I go from here?
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lau99
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It doesn't have to be the nearest person to you - but obv must be reasonably convenient to go to. I'd suggest
* googling any hospitals near you and looking at the little biographies of the various endos and seeing if ANY of them mention thyroid (or if they are all diabetes chaps)
* putting up a new post asking if people here can recommend an endo near you
* emailing Dionne at Thyroid UK - tukadmin@thyroiduk.org for the list of T3-friendly endos and seeing who is convenient
BEFORE seeing any consultant you need FULL Thyroid and vitamin testing
Have you had coeliac blood test?
When were vitamin D, folate, ferritin and B12 last tested?
What vitamin supplements are you currently taking
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially with Graves’ disease
Ask GP to test vitamin levels or get FULL testing privately
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Don't let this endo upset you - strip out your emotion, and save yourself for someone worth the respect. Think of yourself as just an appointment at 3.45 on the 10 March. It hurts less.
The NHS people are generally out patient, waiting list driven, individuals, most of whom push people through the system as quickly as possible and considering the current climate some of them may have been reassigned to other areas, despite the waiting list growing longer each day.
He probably knows he can't help you as he probably can't prescribe anything other than Levothyroxine :
As your doctor is supportive maybe s/he knows how to help with thyroid hormone treatment other than Levothyroxine.
There is a list of " friendly thyroid doctors and endocrinologists " held at Thyroid uk - just email Dionne for the list : and you can be referred to a specialist of your choice, though obviously you have to factor in your travelling time.
Hi again, Penny. Thank you for always being so kind and for the encouraging message. Going off of a PM that you sent me a couple of months back, I think I will try again at my attempt to get a more reasonable Endo in my area now that things are starting to open back up again.
This often happens to people after thyroid surgery. I believe it constitutes medical neglect, especially as you have been left unmedicated. I would really consider a formal complaint at this stage.
I think so, too. Even my GP and Gastroenterologist both think something isn't quite right but my Endo practically refuses to even give me the time of day. I am definitely considering putting in a complaint, but I might hold off until I've had some better treatment elsewhere.
I think there are time limits for starting the complaints procedure, running from the point you were first made aware something had gone awry - in your case, probably the point when you found out the GP's referral to the endo had been refused. The time limit used to be six months, but it may have changed. Worth looking into, perhaps.
Lau99 - Whilst not the same thing, when I initially saw an Endo on the NHS, he was so incredibly passive and dismissive (for example, "we'll probably never get to the bottom of these symptoms"), I was so angry.
Naturally, I had a chat with mt GP about the experience, and she immediately offered to refer me for a second opinion. Furthermore, she asked whom I wanted to see, because she could make a named referral, and finally, that that person did not have to be in our area.
There's a lot of water under the bridge between that experience and where I am now, but I have finally been prescribed T3 on the NHS, by the Endo in my named, second opinion referral.
Please do see your GP and ask for a second opinion, but please decide whom you would like to see first. If you can't do that, my approach with my GP would be along the lines of "If you were in my shoes, who would you want to see, for the best possible outcome."
Good luck with it all. This condition tests our resolve and plain old determination, but please do stick with it. You deserve better than to be left feeling rubbish.
I will definitely take your advice. I just hope that I manage to reach an understanding with whoever it is that I end up seeing in the end. I'm sorry you went through that, as well. I hope you're feeling better now x
Don't worry if you don't have a Endo because a lot us don't have one including me. I have found more help and advice from sites like this one and others in the US. Unfortunately a lot of doctors don't know a lot about thyroid disease and some that do have to stick to NHS guidelines. I now do my own private blood tests and if I need thyroxine or NDT I buy it myself and self medicate. I didn't want to do this but I have received no help or support from the NHS so I have no alternative but to do this. Unfortunately my story is repeated all over the world and the only doctor who actually helped me is now dead and I have no idea if I will ever find another one like him. Sorry to be so negative about it but I am sure there are good thyroid doctors out there somewhere.
It's all pretty depressing stuff, so I don't blame you for feeling negative about it all. If I had known even the half of what I'd be getting myself into, I would have never agreed to have my thyroid removed. But, we move. I'm so glad to hear that self medicating seems to have done the trick for you, though I'm sad that it has had to come to that for so many of us.
I’m with you on this. If I knew what I was up against I wouldn’t have had my thyroidectomy and I had mine removed for cancer and still the Endos don’t really want to deal with you.... we are the throw away patients.
That's really just awful. It's so wrong that they just discarded you like that. I would have thought that they'd continue monitoring patients like us after having such a vital organ removed, or at least anything but this radio silence. It's terrible.
Lau99 - As other have suggested, I would suggest you need to get a sort of battle head on for this game.
I do a lot of prep over a period of time before any appointment I have. I treat them like business meetings.
I formulate MY agenda. I work out what the outcomes could be (discharged with no action, some tests, some meds, other investigations, watch and wait, or whatever), then I think how I would feel about any of those things, and what I would like to say should that thing happen.
I get my various blood results together, and usually take them on a print out, in a table, so that, for example, all the TSHs, FT4 or whatever can be viewed over time, on the same line, just by scanning left to right.
On that, I add in lines for medication taken, and mark any changes, again, so that the person I am consulting has the data in front of them at a glance. I take one copy for them and one for me.
Sometimes they are interested in my "little gifts to them", and sometimes not, but they sure as heck know I'm there for business and have thought about and prepared for the meeting.
The time I was prescribed T3, my (NHS) appointment lasted 1 hour 20 minutes. It was splint in the middle whilst I completed some paperwork and the consultant saw someone else.
Every deferring (whether deliberate or otherwise) suggestion he put forward, I had a question to counter it. For example, "what difference would a good/poor result have in the action after the test?" Or, " What is the Go/No-Go information you get from this test."
I'm not sure if he gave in in the end, or if I made him really think about it, but we got there in the end.
Of course it was shattering, but then so was the working through the mire of ineffective T4 treatment over a couple of years.
Nobody cares as much about our health as we do, so we really do need to be our strongest advocates. Of course, having a background where my work happened to involve negotiations helps, but I'm sure we can all put our data together and just take the time, even over a number of days or weeks, to get our case together.
We can do it on here, so we sure as heck can do it in a room with just one other person (or maybe a few students too - which was the case with my mega meeting).
Please do go have a heart to heart with your GP and/or Gastro. Try to decide whom you would like to see, and ask for that person. If you have a named referral, you must also be seen by that person - not someone from their team.
I was so fortunate with my GP at that time (she has since moved - I'm still mourning that!), in that she just told me how it is and was very candid indeed in her dealings with me - including telling me I knew much more than her about metabolic illness.
I wonder if you said where you are in the UK some folks might be able to tell you of anyone they know in that area who understands thyroid? Obviously, the naming names would have to be by PM, and that's not a fool-proof way of getting a "good one", but it might just help start clarify the maze.
(Oooops. That's a long one. No wonder my appointment was 1hr 20min! )
Thank you so much for such an in-depth reply. You really seem to know what you're talking about I won't give up hope just yet, but it is clear to me now that my passive attitude towards doctors appointments in the past just isn't going to cut it anymore. I will definitely try to be assertive and show them that I'm serious about this.
I walked out on my Endo 10 years ago and don't regret it for one moment. He wanted me to see a counselor because my TSH was 9 and I felt ill! All I will say that is most Endo's stick to NHS guidelines so you probably had a lucky escape.
Yes, perhaps it is just a blessing in disguise...maybe by now I should just come to terms with the fact that I'm barking up a very stubborn tree and I should just look elsewhere for help. I hope you are feeling better after your ordeal as well x
Yes, but the truth is that in the year that I've been taking Levothyroxine, I've probably only missed/been a couple of hours late in taking a dose twice or so, and that was in the beginning.
Well it probably safe to say the Endo threw you away and used non-compliance as a reason. I would contact the Endo and ask him directly exactly why he said that... unacceptable for a doctor to lie about a patient.
I might have to do just that. My GP suggested that I ring his secretary one last time for answers before looking for another Endo. I will make sure this is one of the first questions I ask.
(But do pull the endo up on it , we shouldn't let them get away with this)
I have spent quite a few hours nosing around in places on the internet that are meant for GP's not patient's,( cos i like to find out what they are supposed to be doing before i ask them for anything)
In every single, (usually very short) advice page for GP's looking for 'help with confusing thyroid blood tests'...... The FIRST (and sometimes only !) suggestion to explain 'confusing Thyroid function tests ? '........... is guess what ?
CHECK PATIENT COMPLIANCE, PERHAPS OPEN CONVERSATION BY ASKING "DO YOU EVER FORGET TO TAKE YOUR TABLETS ?"
obviously !..........this has to be the only reason for 'not as expected' results on Levothyoxine treatment ......... otherwise someone would have to admit, that what we are all finding out the hard way , is true ...
ie; It's not 'simple' , Levo doesn't 'fix'everyone, Autoimmune disease does unpredictable things to thyroid levels, Most people never fitted into 'normal'results before they had thyroid disease so they certainly wont fit into 'normal ' afterwards....... etc etc
Anyway , it's not just you. They do it to everyone when they cant understand your results.
.....It's so much simpler and quicker than actually Learning about what could be going on with your HPT Axis.
My gosh...I feel like I'm discovering so many things about the way hospitals run and how doctors know what to say to patients during consultations since becoming functionally hypothyroid with Grave's...it's almost like they operate using a flow-chart! I'm surprised by the "one size fits all" standard that they seem to default to, particularly with regards to a lifelong condition...
Hopefully we can save you the bother of feeling like a useless moaning minnie for 20 yrs ! (who cant cope with a'little' problem when 'everybody else is fine on levo' )
I learned to accept things and largely blame myself, (with the help of GP's and 'CFS/ME specialists' ) over the years ........until i read the Scottish parliament petition, the GMC hearing for Dr Gordon Skinner, the Liothyronine Dossier for the House of Lords, and this Forum from Thyroid UK.......... then i found hundreds of other stories of exactly the same 'all in my head' problems ,in hundreds of other peoples head's.
How astonishing i thought....we've all imagined exactly the same 'imaginary' symptoms!
Sadly you're right...there is a flow chart........ it goes like this....
Hypothyroidism>Levothyroxine>any further symptoms?>Antidepressants>write 'chronic fatigue' on notes>dustbin.
Hopefully it will be better for you cos nowadays you can talk to other patients.... i wish i had been able to , i might have had much more fun in my 40's than i did.
Gosh, that does sound familiar...right down to the antidepressants I'm currently on. I'm still 20, but I was also starting to think I had to just come to terms with the fact that I'd screwed the rest of my life up by having a surgery that I thought at the time would make me feel better...hopefully with some persistence that doesn't have to be the case.
I'm sure you will get on fine XX sending you a ((((hug)))
Actually, however challenging sorting out thyroid hormones is. i believe much more damage is done to people by messing with their heads like they do, and you will be saved from that at least.
Of course you shouldn't believe everything you read on the 'net.... but 108,000 cynical old(er) women cant all be wrong!
My own daughter is 22, so i really feel for you dealing with this at your age.
If you need some more 'mummy's'and even a few 'dads' who 'get it' you know where to find us.
Also just to give you some hope ..... my aunty had graves and partial thyroidectomy aged 20ish..... she had a fine life, teaching at a village school in Kenya, then teaching at an even more remote school on a tiny island off Papua New Guinea, Came home and bought a smallholding and was largely self sufficient, set up a little museum, and lived till 80+. She was still keeping sheep till a few yrs before she died.
So let's assume you will do just as well.
She had her thyroid out in the 1950's so i think it's probable that she was treated with NDT initially, but she was on Levo when i knew her, but at a higher dose than i have ever had.
Well, I think this patient has had a thyroidectomy so the HPT Axis isn't the culprit in this particular episode -
My take is that it was a diabetes doctor in disguise, without a spy glass and unable to see the clues, and unable to solve the conundrum as he was unable to prescribe T3.
I could be wrong - and although I've might have written this in jest, I am very angry that this is allowed to go on at the expense of a person's health and well being.
And I'm sending another couple of hugs to both the detective and the patient.
Oops! of course .. make that HPno moreT axis. Well spotted pennyannie.
I share your disgust at the state of affairs.
I've still got some sort of thyroid gland, although i have no idea what state it's in or what it's up to............ But i had assumed that when somebody advises you to have your entire thyroid out they would accept you need equivalent Hormones replaced.
As for the fact that they don't even think they need to talk to you afterwards ....... well i'm speechless (nearly !)
I have no specific advice other than try to find a new Endo, but please don’t let this bother you personally. I’ve found that doctors don’t like admitting that they don’t know things and so will push it off on their patients as if it’s their fault or in their head. Wrong
Will do. The more he obstructs my opportunities to see him and get some expert advice, even when it isn't just me asking to see him, but his colleagues as well, the more I'm seeing that this might not be a case of 'there's nothing wrong with me', but instead a case of him not wanting to deal with a patient who might not do well on the easiest form of treatment. Thank you for your kind words x
I’m so sad to read this. How many more stories are we going to tell before we’re treated appropriately 😞
You’ve been gaslighted but you endo. It’s not that uncommon. No one is going to help you, as hard as that sounds. You will have to become your own best advocate.
My GP also accused me of not taking my medication when I was up to 200mcg Levo. I felt so sad and bitter for years. Finally through these wonderful people here I became knowledgeable, knew I needed T3 and took control. Over a year later I’m happy and healthy. You can do it too 🤗
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Endo won't see me as I take NDT !! 
Husband has possible CFS/ME - could someone look at his results?
Endo refusing to see me can anyone help?
Endo will no longer give me t4 infusions
