Thyroid, can anyone advise please?

[Featherweighted]

Will try to summarise briefly. Had bloods done at GP surgery early Feb this year, results meant I was referred to an endocrinologist. I’m still waiting for an appointment to come through. About 5 weeks ago I became really ill and went to an and e. I was in day care from 7.00am until late afternoon. Bloods taken, ecg, blood pressure. The doctor there told me it was hypothyroidism and had got worse. A hospital letter advised GP to do more blood testing in 3 weeks (I have an appt for that later this week). All this time no meds have been given to me and I’ve been battling through this alone, I feel absolutely awful. And very afraid. I’m putting the results here: first tests at surgery: T4 16.3, TSH <0.01 and T3 5.1. Day care/hospital: T4 20.4 and TSH <0.01.

Prior to going to the hospital I was treated for a chest infection by surgery. After leaving hospital I developed something that’s just added to me feeling even worse (there was a woman next to me who became very ill, vomiting and was put on a drip), I don’t know if I picked up something. Then, emergency dentist for a root that had rotted under a crown. A week later dry socket and a course of metronidazole. Honestly , I feel like I’m on my way out.

Shouldn’t I have had an endocrinologist appointment by now? More importantly, why am I still receiving no meds for it ? (Hyperthyroidism.

Yes, I became a member yesterday. Thank you so much for those details.

It might be worth chasing endocrinology. Surely, even with the state of the NHS at the moment, eight months is too long?

I can’t chase them, apparently even GPs can’t chase them. I’ll phone the appointment line to see how much longer (it will be an approximate). I think the only way I’ll get seen quicker is if I go private, at a bank breaking cost.

You must be able to ring the endocrinology dept you’ve been referred to and ask to be considered for an urgent cancellation. You can go through the hospital main switchboard number and ask the operator to put you through to the endocrine medical secretary.
It’s hyperthyroidism you have, for whatever reason tbc at endocrine appt. However in the meantime, it would really help you to be specific about what your main bothersome symptoms are. For e.g. heart palpitations? In which case, your GP can definitely prescribe you a beta blocker to help with this in the interim period until you get to see an endocrinologist.

I was diagnosed with hyperthyroidism (Graves disease) about 2 years ago. My GP put me on beta blockers and a low dose of Carbimazole instantly. This managed my symptoms between being referred to and having the appointment with the endocrinologist. I’d phone the GP again.

For me, my main symptoms were racing heartbeat, sweating, itching, fatigue, falling out hair and an over active metabolism (severe weight loss and frequent bowel movements). The combination of meds mentioned above reduced all of that very quickly.

This. Best of luck.

I’d also see if you have access to any other blood test results or ring the surgery to ask for them.

might help if you do manage to speak to someone at the BTF.

betablockers are very helpful and even if you’re swinging to hypo are going to be helpful as the anxiety is very real and physiological

I agree about making a GP appointment. Don’t play anything down, be honest about how ill you feel and as others have said, talk about interim treatment.

re. the endocrinology appointment, it could be worth contacting PALS at whichever hospital you have been referred to. Allegedly you have a right to be seen within 18 weeks, you have been waiting a really long time.
I know it’s really hard to advocate for yourself sometimes, but I think on this occasion you are really going to have to push as much as you can.
I really feel for you and hope someone will listen to you ASAP.

Thank you so much for your replies. I phoned the endocrine appt line and was told referral received 21st Feb so my appt should come up 21st to end Dec (10 months is the waiting time apparently). But, due to it being around Christmas/bank holidays, there could be further delays. I’m going to have to go private and, hopefully, find one who also works in the nhs as well as private so I will only have to pay for the initial consultation (I think that’s how it works). Just hope I can find someone close.

My main symptoms are insomnia, crazy amounts of needing to empty my bladder (5 x10 times a night, I’m not exaggerating) so I’m desperate for sleep. The most awful hot, fever like flushes that last up to 5 minutes and the sweat just pours out of me. I wake up a lot with soaking wet pyjamas and I stink. Palpitations and a constant tremor throughout my body and my hands shake. I am very anxious and I keep getting a physical feeling of utter dread. It’s taking a lot of self control to keep myself from breaking down.I feel nauseous all the time and am having to force myself to eat, food tastes strange. My hair (this happened about 6 months ago) has gone from thick and healthy to brittle and bone dry, I look like crap. I look like I’ve aged 15 years in the past one and a half. It feels like my immune system has stopped working. I already have fibromyalgia and anxiety/cptsd so life is grim.

10 months is the acceptable waiting time according to the woman on the appointment line. She was helpful though, suggested I keep contacting the surgery and go to an and e. I will go to an and e if this carries on although I’m terrified of picking up another bug. Hospitals are pretty unhealthy places.

It’s a horrific condition, I’ve been on too much thyroxine a few times and it was hell, you have my sympathies.

it sounds like you need the beta blockers; they reduce a little of the conversion of t4 to t3 as well as calming down the palpitations, sweats, anxiety etc. iirc my friend had some long acting ones she took once a day.

I’m sorry you’ve been through the mill too, WarriorN. You’ve been so helpful today and I really appreciate it. 🌸

So sorry you feel so poorly. As others have said, pester g.p and hospital. Also join Healthunlocked.
They have really clued up posters and admin who will offer good advice so at the very least, you won't feel so alone
Hope you get seen soon

I’ve just had thyroditis and it was truly awful. Also had bronchitis alongside. I’m sorry you are going through thyroid issues. Just go private.

op I went from gp to ent, to endocrinologist and treatment in FOUR days with private. Exceptional and incredibly fast. I’ve also had a scope and X-rays, blood tests, etc done.

Hi, can you tell me the cost for that please? I’m desperate now and would go private in a heartbeat if I had an idea how much and if I could afford it.

Are you sure they haven't got you mixed up with hypo?

Hyper can cause a thyroid storm which is a life threatening emergency. I have Graves and was seen within 48 hours.

Id go to A &E

I’ve been to an and e, the doctor confirmed hyperthyroidism had worsened. I was in day care all day. Bloods taken. The result? A letter to my surgery to repeat bloods 2-3 weeks later. Result? Bloods being taken end of this week 5 weeks later. It actually feels like I’m being prevented from getting help. If I actually get the appointment in December, it will have been 11 months of waiting with NOTHING being done in the meantime.

I honestly don’t know what to take from this other than to go private.

@Worriedalltheday Would it be best going to a private GP or a private endocrinologist? (I have other long term health issues). And currently have a chest infection.

I'm so sorry. Its madness. I've never heard of someone being made to wait like this for meds.

There is no reason that you can't get a prescription while you are waiting.
https://www.btf-thyroid.org/managing-hyperthyroidism-while-awaiting-your-endocrinology-appointment#hyp4

Can you ring and ask for same day appointment with the practice nurse? They should then escalate this as urgent to a GP to prescribe medication

I agree this is ridiculous OP. The BTF can’t do more than tell you what NICE says and what should happen but they can certainly record your experience and share it with their professional endocrinologist advisors.if this is a common occurrence they do have some power to try to improve gp knowledge on this issue.

they may also be able to tell you what to say or who to call to get attention more quickly. Different scenario but I called asthma UK years ago, on the advice of a friend, who explained what I had to say to access the asthma nurse, who was actually more well trained than the GP. This was pre diagnosis too - the irony was that as far as the gp knew, I didn’t have asthma. I don’t wheeze often. But it hadn’t been diagnosed. The nurse then diagnosed it. I had to specifically ask to see her to check for a diagnosis as she could only be booked if you have diagnosed asthma!

when you’re feeling better I would certainly clarify if you could have received better care in the area on the nhs (I would hope so!) and make a complaint.

As PP linked:

What treatments can be given in primary care?

Your GP will often prescribe you beta blockers, such as propranolol, straight after diagnosing hyperthyroidism. These can help with symptoms such as palpitations, racing heartbeat, tremor, heat intolerance and anxiety. They should also give you advice on stopping smoking, as this can be a risk factor for developing TED. It can also make TED symptoms worse.

I’ve got 10 left over propanol tablets I could post you if you’re desperate!

In all seriousness, how old are you? My MIL was diagnosed with hyperthyroidism recently (74) and it took AGES to sort her out basic meds whilst she waited for the consultant appointment. However, I was 42 and my beta blockers and carbimazole were sorted by my GP as soon as my original blood tests confirming hyperthyroidism were in. Same city, different GP surgery.

Push your GP for beta blockers as a minimum. Your heart will be working overtime and this is dangerous. I describe hyperthyroidism as your body being at a slow jog All. The. Time.

A private endocrinologist rather than a private GP.

I’ve been to see one, it cost about £150 for the initial consultation but that was about 10 years ago. But it moved things along quickly after that and I didn’t have to lay out any more money in the private system. Have you got a Nuffield or Spire hospital nearby? In my experience, GPs are happy to write a referral for you to a private consultant.