Doctors keep ignoring me - had a PE and now hyperthyroidism they won't treat

[PanicAttax]

I am really lost at the moment. I was told in Jan I was just anxious and turned away from A&E when I actually had a pulmonary embolism. I was rushed back in and given 3 months of thinners as I am apparently otherwise healthy - no need for a longer course. Case closed they said, despite me asking why a) I still felt rubbish b) why i had the clot to start and why I would not just have another PE?
Went to a private clinic where he said my huge weight loss since Sept was actually very worrying and ordered an ultrasound of my abdomen as I am struggling to eat (no one cared about this in connection with PE previously).
Finally managed to get through to the GP after weeks of calling and getting an answerphone. Finally got a full bloods test done.
Gp calls and says I have B12 and hyperthryoidism - puts me on beta blockers only. I rock up to get the CT she ordered for abdo and they ask if I have any thryoid issues - yes - they look shocked and say they can't CT because of iodene and call GP to check. GP says they lost my bloods but not to do it in case. I am now confused. Go in for 2nd B12 injection and demand blood print outs which I have been asking for since first GP told me about results. Get print out, clearly says I have hyperthryoidism.

1. Why did they pretend they didn't have my hyper results?
2. Why didn't they stop the CT before I went to have it if it would kill my thryoid
3. Why are they still refusing to give me an urgent GP appointment to get medicated
4. Why has no one called to explain I have hyperthyroidism and what they are going to do to treat it
5. Why has no one put me on something to stop the hyperthryoidism causing another clot
6. Are they hoping my condition gets worse so I have to go to the Walk In and not bother the GP?
7. Why is my appt tomorrow with a locum rather than a regular GP?

I'm so exhausted. I feel they don't want to help me at all and it's making me really depressed. I don't want to get out of bed. I can't eat. No one cares.

What really annoys me on top of this is that when I went for the GP appt it was so hard to get after weeks of trying, the entire waiting room was empty and the phone didn't ring once.

They have no one in there seeing the bloody GP's yet I can't get an appt for days?

OP - join the Thyroid UK forum on HealthUnlocked and post this message on there.

It’s an active forum and the admins are all individuals that have many years of experience dealing with their own thyroid conditions.

They will give you excellent advice on how to navigate this with your GP.

Also, this is posted in the Mental Health section and I wondered if this is because you are on any medication?

One of my friend’s has intermittent hyperthyroidism caused by the medication she takes and she only gets prescribed beta blockers for it.

EDIT - cross posted with people who have proper advice!

I am really sorry to hear about your experience.

However, I literally do not have the time - and neither do you! - to start explaining the hideous mess that is the NHS and the GP system.

I wish I had more time to reply properly, but ultimately I can't offer a solution so I won't waffle.

But don't try to focus on what's gone wrong at your GP. It is a waste of time.

You can only focus on getting correct treatment.

It looks like the main issue now is getting your thyroid treated?

Were the beta blockers prescribed for anxiety? The current system is set up to dismiss women as either needing mental health medication or something hormonal.

I would suggest that you take someone else with you to the appointment....

But there is also a risk that you will see a non-GP, who will just keep telling you that they haven't got the authority to check this, that, the other, so might not be worth the bother.

Do you have someone to talk to about the situation and make notes so that you have a correct record of the medical status?

I no longer even know what my NHS record says - It is that worthless.

From the several hospital admissions my parents have had over the years.....Staff do generally know that it's worthless and they will come round and ask you questions before procedures.

Thank goodness they do because you were asked that question about the CT scan. Maybe it's worth posting on the general health board about your thyroid questions?

Thank you. I've dragged myself on the dog walk. Got a 4 hr drive tomorrow and am dreading it to be honest, so the last thing I need is a disinterested locum calling while I'm already struggling to concentrate on driving!

I'm not on anything now other than the 10mg of betablockers x3 a day. The depression I'm feeling is completely because of this prolonged mess and complete lack of care. Sitting jn an empty waiting room wondering why I've been told for months I can't have an appointment... I know now they're sitting there empty and I'm not being treated.

I'm going to do the dog walk, force down some food and pack a bag and sit in the walk-in.l and await the severe cramping.

@PanicAttax Are you aware that the beta blockers will be making you feel even more depressed? Sorry if I'm stating the obvious. They will also make you feel lethargic. Well, not everybody, but I certainly had that problem and a lot of people do.

I definitely wouldn't take that phone call while driving.

No! I had no idea they made you tired! I'm already shattered with the B12 deficiency combined with hyperthyroidism. Literally going up/downstairs feels like an epic task.

I really wanted an actual appointment to talk about it all. Not a locum at some random undisclosed time. I have zero faith they will actually help when I've been passed around so much.

Forgot the main thing which was the beta blockers have helped with resting heart rate jumping over 130 when I'm just sitting watching TV.

I was puzzled why I was struggling to go up one flight of stairs at mums!

Fortunately, she knew the answer!

and your dosage is being spread out across the day, I just took mine at bedtime.

They did want me to take another one in the morning, but by that stage, I knew enough to know that I should ignore them.

I obviously can’t say “don’t take them anymore” because I’m not a doctor.

Is there any chance that you can afford to go back to the private clinic?

they obviously didn’t know about your thyroid situation so they referred you on for something you shouldn’t have - but that’s not their fault.

I wonder if you could a have a private GP appointment where they can review your whole situation.

Do you know what the cause of the blood clot is thought to be?

I mean generally, it needs a motivated person to look at it properly. Definitely take the advice of the other posters and post on the forums they suggested.

Right, but shouldn’t thyroid medication address that? I don’t know, but that might be another question that needs addressing.

I really do feel for you. I just can’t talk about the NHS without flying into a rage.