HELP ENDO IS AWFUL!

[Blueeyes57]

hi.i would welcome any advice. Long term Lupie (no major organs) on Hydroxy and 2mg pred.problems have arisen since

Multi modular goitre (benign) has caused

My thyroid levels to fluctuate from hypo (TSH 3.5) to TSH 1.6 but THYROZINE levels high end 19.9. ENDO refuses to trial any meds as I asked, says too risky can cause dementia and stroke?? But the way I feel I want to try as my life sucks at

Present and I am Virtually housebound dry falling Out hair so tired and achy

That I could cry and frequently do as

So depressed. Seeing consultant Rheumy Chinoy and Endo Robinson at salford Royal but Endo won't see me

For six months as Want to just monitor but I can't and won't feel like this for that long - willing to pay but don't know if that means burning my bridges (offending Rheumy they all stick together) and anyway have no idea who to see. Please help feeling desperate and I am

Pretty used to Lupus this has taken me back 10 years! Thanks.

Spike and

[Blueeyes57]

Sorry having some technical

Problems

On this website with typing!

[Penguintaz]

I think that's really bad of your Endo to not see you. They are often busy but it sounds like you are having a flare at the moment! So they should listen to you. Can you go to your GP first and explain the situation, they can be good at helping you get attention from other doctors.

It can be scary switching doctors or specialists if you've been with them a while but if your current one is not helping then you should. This is about your health not who you may offend.

Please look after yourself and try to reach out to people or express your depression in some way. Even if it's just writing negative thoughts on paper and tearing them up. Go careful X

[whisperit]

Hello Blueeyes57,

Have you posted on the ThyroidUK site here? They are probably more likely to have the expertise to help (your numbers look normal to me, but what do I know?)

It does seem very odd that your endo suggests that the risks of dementia and stroke are concerns - they are rarely a big risk in a short term trial. Maybe s/he is also concerned about precipitating an adrenal crisis???? ( but again - what do I know?)

I would definitely speak with your GP and ask for a copy of any letters your endo has sent him/her recently about your situation. Otherwise, don't worry about offending your doctors; they have so many patients on their caseloads that I'm sure they are only too pleased to pass one on to someone else!

Hope you can sort something out x

[Blueeyes57]

Thanks everyone. Yes will post thyroid community too just thought with having lupus too may be particular problems with the two conditions together. Everyone's support is very valued.

[Melbourne-Girl]

Hi Blueyes57. I just saw this post so you have probably found the Endo or Rheumo who is right for you. That is they have your back and treat your conditions in a timely manner and will give you medications or suggest devices that will give you that quality of life that you deserve and need. I have worked with all of these types of Specialists and once they become an Endo or a Rheumo there are so many diseases in that area they choose the ones that they prefer to deal with and almost become a Specualist within a Specialty. They seem to not disclose this to their patients so the patients must do their own research on which Specialists know a lot about your disease and work with it frequently you can often find out by looking up your disease on line and asking for important clinical trial experts in this area. If the clininical paper does not mention it I would phone their rooms & see if they see private patients. With the clinical papers don’t get bogged down with them just look at Conclusion & Summary & main Specialists in trial. It’s handy to know how many patients were in the trial also. If it were only an abstract with 10 patients it would not hold clinical significance. If it were above 30 patients you should have clinical significance. I know in Australia top medical researchers in a medical area (usually Professory) will see patients as well. They are the ones you need to go for to find a champion for you, your disease and your treatment. There are still Drs who are a Specialist who would not admit to their potential patients they spend most of thei time working with osteoporosis patient (that could be a top Endo or a top Rheumo). If you haven’t sorted it out you need to find your champions,

All the best

Melbourne -Girl

🍀🍀🍀🍀🍀🍀