Basically, endocrinology for povs, ie not rich people, is rubbish.
Everybody is in denial about this. Nhs endos, because they’re taking their shilling, private endos because their activities made it all possible, and patients too, mostly because until they get ill and fall through the holes, they will never find out.
Basically all endocrinology is rubbish. So are most endos - private and NHS and in just about every other health service in the world. Only a few dedicated doctors/researchers know anything about thyroid.
Oh love, thank you. I had an awful upset at my gp’s, and I have to decide what to do. Afraid of spending more of our tiny amount of money on a wasted mission but the problem is beyond help available on the internet xxxxx
I under-stand. I've had lots of upsetting appointments with GPs and endos. But, the answer is on internet: self-treating. You can buy your own hormone and get your own tests done.
Would you care to tell us what the problems is, to see if we can help?
Sheehan’s syndrome, I am pretty sure, and the drugs are just too dear and the tests too expensive-MRI, TRH, ITT and more.
The gp became so upset, making fists and hyperventilating because he thinks private endo is poisoning me with levo, not understanding central hypo. Has withdrawn all levo. I feel so ill.
I see. Silly man! And the private endo picked up on it? Do you have copies of your latest blood test to share with us?
Levo would not poison you, even if you didn't need it. But it would make you feel bad. But, if you have low FT4 and FT3 then you need it, and never mind about the TSH.
I'm sure you do feel ill. But, would you be able to write a letter of complaint about this doctor stopping your levo? I'm sure there must be someone in the practice that knows something about Central Hypo. Did your private endo not write to your GP?
Not fully enough to explain that tsh isn’t relevant in CeH. I started trying to explain, but he stopped me saying it isn’t within his scope to know these things, although he stil let himself go bonkers about it!
In spite of all that, I still like and respect him and would never complain about him. I have been speaking to a very good nhs advocate, and am probably going to complain about the Imperial endos. I still have to find a pituitary st who can actually do the tests needed for proper diagnosis so that this mess stops. Vanderpump had asked for a private mri, but I couldn’t afford it so that was a dead end. He prescribed ongoing Levo as a stopgap expecting conclusive tests, but can’t order them because he has no nhs practice now.
I need the Levo to have any kind of life, even to be awake, but after a few months I begin to get nausea, which I think is probably an adrenal thing- this is why I can’t treat myself xx
Also, the Imperial endos have misdiagnosed me as having subclinical hyper and he of course believes them completely, even though they refused mri (which he doesn’t believe!)
I take it you've done your homework on all this, and know why they're talking rubbish? Are you building a good case with the NHS advocate?
after a few months I begin to get nausea, which I think is probably an adrenal thing- this is why I can’t treat myself xx
What did the private endo say about the nausea? What did he say about your adrenals? Were you increasing your levo every six weeks? Did you have your nutrients tested: vit D, vit B12, folate and ferritin?
But it's this GP that is depriving you of levo, and thereby depriving you of life! How can you not complain about him! If it's not within his scope to know about such things, then it's not in his scope to go against the endo that said you do need it. What makes him think he knows better than an endo?
OK, so he believes the 'Imperial Endos', but that is not logical, why believe one endo and not another if he knows nothing about the subject? I would have thought your life was more important than your loyalty to your GP.
I agree with every word- he just has a thing about patients getting private input I guess. He also believes nhs care is adequate and right in every situation, which is probably where I started from!
Well, that's just not good enough from someone who has your life in his hands. It is your body, your health, your life and you have the right to go and consult who, where, and when you like. And this petty dictator has no right to say otherwise. Let him keep his beliefs for Sunday in church, in his consulting room he needs to be dealing with facts.
I'm sorry to go on, but I just don't understand how you can tolerate this state of affairs. I really think I would have clocked him one, had it been me. And I don't say that lightly. Who the hell does he think he is?
First step is to get FULL Thyroid and vitamin testing BEFORE considering seeing any consultant
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 if Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take 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)
If/when also on T3, make sure to take last dose 8-12 hours prior to test
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all 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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Email Dionne at Thyroid Uk for the list of recommended thyroid specialists. You need a pituitary, Thyroid and Adrenal specialist
Roughly where in the UK are you?
In London. The problem is a pituitary one, and Pituitary foundation recommended one. I’ve had disastrous non-treatment from 1 nhs trust, and second opinion from same trust who just agreed with the first without any further tests than blood tests, which are not enough for this. Private endo at least provided Levo prescription but gp has withdrawn it because he looked at tsh which is rightly suppressed in central hypo-he doesn’t understand that. I feel suicidal and don’t think I can hold it together.
I haven’t been to the one Pit. Foundation recommended yet. He’s so expensive and my last chance. Will look at Dionne’s list. I don’t know how to choose. Been trying to contact Thyroid Uk helpline. I I’m not sure I can handle this.
Yes, you can handle it. You have to be strong. Get the list, and chose an endo near to you. Then, you can do two things: Post on here with the name of your chosen endo, asking for feedback by PM. Secondly, ring the endo and ask his receptionist if the endo understands Central Hypo. If she doesn't know, she can ask him/her and get back to you. There are endos out there that know about it. And, when you find one, you must lodge a complaint about the GP who stopped your levo. That is unacceptable behaviour!
And know that you're not alone. We're here to give you all the support and advice we possibly can. 
This site has proved to be an absolute godsend, because of the breadth of knowledge shared - do pursue your best chance of health - you will feel better once you get a handle on what's happening to you... am currently in bad odour with my own GP because I'm looking at a conversion problem.. but your GP could be a serious risk to others as well as you, by the sound of it. Do persevere, we're rooting for you.
It was unbelievably awful! He can’t believe the clinic endos could miss it. The whole thing was beyond description x
It's not just the UK. The USA is devoid of knowledgeable doctors😥
Top Trumps Endocrinology
Advice following endocrinology appointment
ebook in Frontiers in Thyroid Endocrinology accepted
Finally got an endocrinology appointment 
Letter from Endocrinology 
