Hello everyone!

[Ginny52]

I haven’t posted for a while- just had what I believe to be another nhs misdiagnosis- I can see now that unfortunately nhs guidelines make diagnosis of secondary hypothyroidism very difficult if not impossible, and this will have to wait until I have, for me, quite serious money to have the tests they won’t pay for. Until then I remain largely self-medicating, and what I really want to say is, no matter how much endocrinologists may wish to hang on to their illusion of control, it is just that, an illusion.

Hormones and hormone analogues are not drugs, and there is no legal reason for people not to be able to medicate themselves as they see fit. NOBODY can shout at you, or tell you how you feel, or that you’re depresssed or delusional or any other insult. I feel so angry that this is happening that I would like to see every aspiring endocrinologist required to have the words ‘it’s only opinion and advice and you are free to ignore it’ tattooed on their foreheads before they get to step into the consulting room and start charging the nhs money.

Very best to all, Ginny

[Ginny52]

Thank you Really! I feel badly in need of reinforcement x

[Ginny52]

Feeling pathetic, can’t make my pm go.

[Ginny52 in reply to Ginny52]

Ok, I think communication established!

[Poethlyn008]

Hi Ginny52

I believe I’m going to be in the same position very shortly. I suspect I have secondary hypothyroidism too (based on symptoms I have, Blue Horizons thyroid tests and advice I received here). However although my gp is now going to test my free T3, pituitary and other hormones I don’t have much hope that I will receive a diagnosis or any help.

Do you mind me asking what you self medicate with? I’m fully expecting to have to go down this route but unsure where to start.

Many thanks

[Ginny52 in reply to Poethlyn008]

Well, my experience here is quite limited-the problem started in 2016, and it was a year and a bit before I realised nhs endocrinology was not going to help. I tried t3 for a week, felt much better even in that short time which was a life saving revelation- then I began having nausea and epigastric pain, which I now think were from too high an initial dose. Tried Levothyroxine from March till now, and once again the improvement was like day and night-unfortunately serious back pain began at the same time, and I think that and Achilles tendinitis May be related to the medication (hair breaking off badly but less important). Thinking of trying NDT. X

[FIT2018]

I have written similar posts... I have resigned myself to the full responsibility for my health, self testing, self medicating and just using the NHS as a test bed for my own diagnoses/demands. I feel much better not having any expectation or faith in the medical profession for anything concerning thyroid function.

Other conditions maybe (as realyfedup123 points out) , but not this one.

[Ginny52 in reply to FIT2018]

I feel bad for my very nice gp- I think it’s going to put him in quite a hard place. I just can’t quite believe how poor endocrinology has turned out to be

[FIT2018 in reply to Ginny52]

Politics and money.... that's what is stopping the GPs from having a choice of medications for you. NDT used to be the normal solution, but Levo.... someone is getting paid to keep this as the sole solution. T3 is another scandal... So I get the GP issue (other than the fact that they can be so ignorant/arrogant, never a good combo).

What I object to is the fact that they side with the "system". They should be fighting for us, not just rolling over with a "oh well, nothing we can do" attitude. When we start suing for negligence and medical misconduct, they might wake up to the fact that is their problem as well as ours...( and then I woke up!) I have been physically damaged by incorrect medication and neglectful incompetent care for 18 years... a bit angry.

[Ginny52 in reply to FIT2018]

I will have to go private which I can’t afford, and will have to look to the nhs trust for compensation. Makes me very sad.