Graves & feeling forgotten MOAN ALERT

[FiFiFillary]

So I was diagnosed with hyperthyroidism April 2018 and Graves sept 2018. On 5mg carbimazole now and last saw NHS endo early Dec who wanted to see me again March / April. No letters or follow ups through post, no blood forms until I left maybe 5 messages to the department. Then I got a letter with an appointment for end of June. So I rang back to say I was told I was to be seen march / April and then after a few weeks they’d brought my date forward to today. After more chasing they sent me a blood form which I had bloods done 2 weeks ago in preperation for today’s endo appointment. Bloods were requested to be sent to my GP however this wasn’t done.

So today I turned up for my appointment, sat there 45 minutes and there was no one in the reception to query why I was waiting now 45 minutes past my 3.20pm slot. I called a nurse from a diabetes eye clinic and asked her to look into this. She brought another lady back who said they’d called me and left a message to cancel the appointment due to the endo being on compassionate leave. Nope! I have no message. I still have no blood results and I still don’t know when I’ll be seen, could be a clinic as far as September. I cried as soon as I walked out this doors because I’m tired, I can’t stay asleep at night and I’m tired in the day and I just knew today I’d have a plan as to what next. Stay on meds. Come off meds. Am i hypo as over medicated. All those unknown questions. Not anymore!! I’m back in limbo.

Just needed to vent to fellow warriors as I don’t feel I’m getting the support I need

[MissGrace]

You’re dead right - you’re not getting the support you need. You’ve been treated really badly - thyroid patients just don’t appear to be able to win. Hyper or hypo, all too often we’re just left to get on with it.

Often it seems so unfair that no one except fellow sufferers seem to understand how debilitating these conditions can be. Living death appears acceptable to our GPs and to many endos - after all, it’s not actual death is it?

Complain to PALS and let them know you need an appointment urgently - maybe they will be able to help - they can be very good.

I’m sorry you’ve had to go through this and it has moved you to tears. Try kicking the nearest litter bin when you leave next time too - that helps!

🤸🏿‍♀️🥛

[FiFiFillary in reply to MissGrace]

Thank you. I’ll look into contacting PALS if the lady who finally appeared from the deep dark depths of the endo department doesn’t call me back tomorrow as promised xx

[Fruitandnutcase in reply to MissGrace]

Ah no - buy a bag of jelly babies, open the pack, take one out, name it for the department or person or whatever has upset you, hold it up and say what you want to say to them - then bite it’s head off. You’ll feel better believe me 😉

[WobblyX]

Sorry to hear you have had all this mess to deal with....they have no idea how stressful hospital appointments and test results are for those of us with thyroid problems.

I would phone endo secretary and insist on someone (anyone ,..ward cleaner if necessary...but another doctor would be ok!) giving you the blood results and then giving you a time frame for hearing when you cancelled appointment will be.

I do tend to find that if any results are very off you get a phone call very quickly so I’m now tending to think no news is good news...but.....I also don’t trust that so well so I like to get my results ASAP.

Hope you get some useful news soonXxx

[FiFiFillary in reply to WobblyX]

Thank you. I was thinking this too but I keep a record of all my results so I can track which way they’re going so I’m a bit of a control freak. I guess just the reassurance of knowing there’s been no drastic changes is reassuring and that’s what I was hoping from today, as well as where I go from here xx

[Fruitandnutcase in reply to FiFiFillary]

That’s really dreadful. I hope you hear back from the person who is supposed to be contacting you.

Wonder if it’s the nature of Graves that makes us a bit ‘control freak’? I was the exactly the same as you are.

I kept a notebook with all my test results and quick bullet points on how I was feeling after each change in medication and in general as well as any questions I wanted to ask my doctors and any interesting information I found about Graves.

Could you persuade your GP to track down your blood results - or even do them again?