I am so angry update

Just thought I would update the lovely people that had read my last post. After I took my 28 year old son to my GP after his own had dismissed his thyroid deterioration and swollen ankles. We had been referred to the assessment unit at the hospital where they had said he was going into thyroid crisis. He was started on a low dose of Carbimazine and as I said amazingly an appointment for the Endocrine clinic arrived the next day.

His health continued to deteriorate and by Friday his breathing was fast, high temp and his right leg was swollen and red then came groin pain. By Saturday morning he could not stand. So back to A and E. He was then diagnosed with a DVT!

He was still sent home this time with heparin injections that I give him daily. By Monday the DVT clinic called to arrange the Dopler test and said Friday. I told them he was so unwell that we wold be straight up. He then had lung xray, scan, arterial bloods etc still no Dopler. They have however cancelled out a clot on the lung. Which is something. The surgeons assessed him due to abdominal pain. No tomorrow we are back for Endocrine clinic and DVT clinic again.

Complete farce.

[Lupiknits]

I'm so sorry about this, as you say, farce. I do hope your son gets better. I also think, when you are ready, that a complaint is in order. PALs can help you with this.

[Hidden in reply to Lupiknits]

I think I will be ready very soon. I can not fault the care he received in A and E and the assessment unit, but his own GP and the clinics have let him down. Only the consultant yesterday in the DVT clinic actually took note of my history and that he was newly diagnosed with hyperthyroidism. Amazing.

[EOLHPC]

I agree with lupiknits 😔:.am dismayed you're going through such a farce...PALS is the way to go! Please keep us posted

🍀😘🍀😘🍀😘 coco

[whisperit]

Ughhh, how distressing for you both. Hope things get straightened out today - please do let us know x

[PMRpro]

With Coco all the way - PALS. And a discussion with the practice manager at his GP practice to use whatever the procedure is to complain there...

[Charliebear68]

Hi Johare,

I'm so sorry to hear about your son. It is absolutely ridiculous, you and your son must be at your wits end! I agree with the others, PALS and complain, this is totally unacceptable.

Keep in touch,

C xx

[Wendy39]

I am so sorry to read this. I missed your other post. I must say I am struggling to keep up here at the moment, not through ill health, just busy family life. I really hope he's OK. My thoughts are with you both. Great advice from everyone re complaining too. x

[Hidden]

Seen at endocrine clinic today put the dose of Carbimazine up x4 thyroid scan and repeat bloods. She thinks its Graves desease, so hes joined the auto immune club. Then seen back at DVT clinic for dopler. Clot found in groin hence the pain. Taken off of the heparin and put double dose of Wafarin and Co codamol with ibroprofen. Back to GP to more to fill her in. Cant wait. Thankyou all for your support. Yep PALs is definitely waiting for us.

[sunshine16]

Agree with All of the above

Take care

Best wishes to you and your son

[Ianrussell69]

So sorry to here about your son hope he gets better quickly my sister was sent home from Birmingham hospital last month with pneumonia and 5 pulmonary embolisms she goad to go back dayley for blood thinning drugs it's mad don't know the solution the staff are all over worked and grossly underpaid!

[Hidden in reply to Ianrussell69]

I totally agree. The assessment unit was overflowing and the hospital did their best for my son. I also sympathise for GPs. The targets and lack of resources placed upon them is stupid and it allows of errors. I hope your sister is over the worst now.

[Ianrussell69 in reply to Hidden]

Yes thanks she is getting better the up side is due to all the test and scans that have been done it's come to light that yrs ago she was misdiagnosed as having irritable bowl sindrome, surprise surprise look like she has an auto immune problem which stops her taking any calories out of food when I find out what it is I'll post it must run in the family

[Hidden in reply to Ianrussell69]

Glad to here. Indeed, we rarely seem to have the same things as our family members just another form of auto immune to keep us on our toes.

[jennyall12]

Hi, I feel and am so sorry for your frustrations. Try to breathe and relax, and be focused on a solution. Easier said than done, but Lupus can throw some things at us that we aren't ready for, but we have full control of our reactions to things. I will say a prayer for you and your son. Please keep us posted on how he is doing.

Sincerely,

Jen

[Hidden in reply to jennyall12]

Hopefully he is over the worst and the medication will kick in now. Going to take the dog for a walk and calm down. We saw the GP today. She looked amazed when I pushed him in a wheelchair, handed her seven sheets of paper from the hospital and then told her what had happened, since she told him he had an infection. As we left she asked me if I was ok pushing him around. I'm not sure if she was offering to push him home for me.

Thankyou for your wishes.

[baba in reply to Hidden]

Johare, has your son been tested for Hughes Syndrome/APS/"Stickyblood"

healthunlocked.com/hughes-s...

aps-support.org.uk

bit.ly/2faVuiO

[Hidden in reply to baba]

Thankyou for your response. Yes, I told the consultant in AMU that I had a number of auto conditions and that I had been negative for Hughes. He has done a number of auto bloods and I am assuming Hughes included. The Endocrine consultant seemed happy with the bloods that had been ordered, again we had mentioned this to her as well. But you never know!

[baba in reply to Hidden]

Tell your son to ask for copies of blood test results so you know exactly what has been checked. We are all entitled to see OUR blood test results.

Wishing you both well.

[Hidden in reply to baba]

Thankyou.

[nancarolyn]

It is so scary what your son is going through. Nothing causes me more pain than seeing any of my children in pain. My son was diagnosed with Hashimotos Thyroid which has changed. He is 28 and has been on thyroid medicine since age 4. Take care. I will pray for your son and you. God Bless you.