Out of ideas, unsure of where to go next...

[Tony63]

My partner has Hypothyroidism, It was diagnosed a year ago but looking back it may have been undiagnosed for up to five years. She asked to be tested for Hypothyroidism 3 or 4 years ago but the doctor denied her saying it was very unlikely, no surprise there. The behaviour of my partner's GP has been diabolical (I know almost everyone here is in that boat) and it's got to such a state that I am now convinced they are putting her life at risk by denying even the most basic blood tests even though her thyroid levels are not stable, she takes NDT (Erfa thyroid) containing T3 (through Dr S.) and we have absolutely no idea where her T3 level is. We spent a week in St Barts endocrinology department last month and they don't even test free T3! We can't find a decent Endocrinologist in this country! Does one exist? I'm really asking, if anyone knows please let me know.

It got to a point where she was using every ounce of the tiny amount of energy she has fighting for tests, she developed an Ovarian Tumour and has been in constant pain for 11 months, with absolutely no help from the GP, not even pain relief! We saw a Gynaecological surgeon in London and he said that he cannot perform a laparoscopy/removal of the Fibroma as her thyroid hormone levels are not in check, and we can't get the levels in check because Endos are not aware of/interested in NDT. It's a vicious circle. In the end she just gave up. Literally gave up and went to bed, where she has been ever since. The GP at that time decided that they could no longer treat her (too many disagreements with the GPs) and removed her from the surgery. So we had to find a new GP and as they are all as bad as each other and the (seemingly) decent ones were just out of the catchment area, we got saddled with quite possibly the worst GP (I refuse to call them doctors) in the world. She is so vacant it's unbelievable, we may as well be talking to a dog! She just stares right though you and doesn't take in a word!

My partner is at this very moment in a great deal of pain, our local hospital which is literally across the road topped a recent list of the worst hospitals in the country and I cannot dispute that,we have visited A&E three times when she has been in enormous pain, we have been made to wait on hard plastic chairs for more than four hours each time before she is given morphine and sent home. On the last occasion she collapsed and fell out of the chair, she was put on a gurney and we waited for a further six hours before being told there wasn't much they can do and was sent home, we were there through the night for 12 hours for absolutely nothing.

The pain is back tonight, as I am writing it is getting worse so I have to stop. We don't know what to do, it's my job to protect her but we don't have many options. The emergency doctor will send us to A&E and she won't be able to take that again. I am at a loss.

[nicolajane]

Oh gosh, what a nightmare....... I know what you mean re GPs - I've been through the mill myself on that front. Can I ask what area you live in??

Also, If your partner has had NDT prescribed by Dr S, could he not help with follow-up blood tests?

Nicola

[editfmrt]

I'm in an almost identical situation trying to help my sister, so know how desperate this can be.

Where are you?

There is a lady in Warwickshire (NHS) but also takes private patients. I will PM you details? No idea if that is any use so if you can let us know what area you are in someone may be able to help. Keep strong x

[Tony63 in reply to editfmrt]

Thank you, we are in Leicestershire so not too far away.

[editfmrt in reply to Tony63]

When I log on shortly at work will get her details and pm you.x

[editfmrt in reply to Tony63]

Message sent

[tegz]

It's possible to get a private FT3 test about £60 plus phleb. [bloods] and consult fees. [BMI]

I did it through a local private hosp. health screen facility as a self referral.

I'm amazed you get wife to a surgeon who can't refer the problem to GP on known issue.

Must be room for some official protest there?

Endos?- well I think you have to dig deep,but there's a list available from LouiseW this site if you PM her which may help.

Just fighting back 'the system' does you good! I know you can get low trying..

Good luck for your partner.

[Hidden]

How strange,and frustrating for you both. Removal of a benign fibroma is a very simple procedure usually done as outpatient and a very simple thing.Its very painful and they won't give painkillers??? Weird,there must be another agenda going on for them.Take comfort,if any is to be had,in the fact it is just a benign one and nothing more sinister to worry about on that score it could have been so much worse. Good luck

[Clarebear]

I have been wondering how Edysia is and am really sorry to hear this. I too have hard good things about the endo mentioned by editfmrt, and think seeing her would be a good start. I believe Blue Horizons do a finger prick FT3 blood test (hope that's right), so you don't need a phlebotomist to draw the blood. Hugs to you both. Xxx

[shaws Administrator in reply to Clarebear]

Yes, Clare you are right about Blue Horizon. The test is done at home and you post the envelope back and they reply by email in a couple of days. I think it was about £36 but cannot remember exactly.

[lola1956]

i hope some one here was able to help you,also hope your wife gets help soon, what a terrible position to be in, good luck