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.

I’m 67, don’t know if that makes a difference.

You need to get back in touch with you GP immediately. I can’t understand why they haven’t started you on Thyrozxine?

It’s so difficult to get to actually speak to a GP. I agree with you, I shouldn’t have been left so long. I was considering writing a letter to the only Dr who seems to care and explain how terribly ill I feel, drop it off when I go to have my bloods done (again!). Or go to an and e again. But why couldn’t they start me on meds?

Call 111 if you can’t get to see your GP. This is not acceptable

Thank you Goldengirl123. It helps a bit that someone understands.

She is hyper not hypo- thyroxine is the last thing she needs. It's more complex to treat than hypo and they will need to diagnose the cause.

She needs to see an endocrinologist asap. OP, have you followed up with your GP at all?

Oh sorry I misunderstood

I was about to say the same thing @plank as the TSH was very low indicating too much hormone. Hope you can push for someone to see you soon. Do you have anyone who can advocate for you? It's tricky to do when you're feeling so unwell.

at the very least the gp could prescribe beta blockers I believe - check nice guidelines

The BTF are the charity under the British thyroid association of endocrinologists so they use consultants to guide the content they put out.

https://www.btf-thyroid.org/hyperthyroidism-leaflet

They do actually also have a helpline

• Beta-blockers are tablets that are sometimes used in the first few weeks after diagnosing hyperthyroidism as they relieve some of the symptoms while waiting for other treatments (radioactive iodine or antithyroid drugs) to take effect.

The doctor who treated me for the chest infection told me he would chase up the endocrinology appt. I was then told by the assistant practice manager he ‘had no right to say that as it isn’t in their remit and that it would be looked into/she would have a word with him’. Since then, nothing. It feels like they’re ticking boxes, the hospital advised another blood test so I’m getting another blood test. But nothing will change. I still have to wait for the hospital appt.

@FridayNighFeeling No one to advocate for me. Yes, very tricky when I feel so broken and ill and am feeling that they wouldn’t care if I dropped dead to be honest.

https://cks.nice.org.uk/topics/hyperthyroidism/management/management/

Because she has hyperthyroidism, ie thyroid too high (as evidenced by the very low TSH). Thyroxine is for an underactive thyroid so would make the problem worse.

OP, need to go back to GP.

@WarriorN Thank you for that advice. I have actually just bought the info pack from the British Thyroid Association and waiting for it to be delivered. I still don’t know how to get advocacy/someone to speak for me.

Chase up the appointment definitely and ask to be put on the endocrinologists cancellation list.

I was diagnosed with Graves (overactive, Hyper) in my early 20’s and am 54 now. I had radioactive iodine treatment that made me Hypo.

You will feel better very quickly once you start on synthetic thyroxine. I know how unwell it can make you feel.

Are you a member? I’ll see if I can find the numbers

Without the ranges, it is almost impossible to know exactly what is going on. Also those are just two of many thyroid tests that can be done. You may have Hashimoto's which can result in very changeable thyroid results. The results that you have posted suggest that you have high levels of Free T4 circulating and a suppressed TSH (however, that is without seeing the ranges, just based on guesswork of what the ranges usually are). That suggests that you could currently be hyperthyroid.

You really need to get an urgent referral to an endocrinologist. Bombard your GP by email, appointment, online message and whatever else you can to get them to expedite your endo appointment.

Also ask your GP to test for thyroid antibodies, so that they can start trying to work out if it is Hashimoto's or Graves or something else entirely. Ideally, they should test T3 as well, but GPs seem to be forbidden from doing this basic test, which is why you need to see an Endocrinologist.

id book an emergency gp appt and print this out circling the while you are waiting bit….

Sorry, OP just realised you’re Hyper? Likely they’ll try Carbimozole .

If you become a member you can access their helpline

https://www.btf-thyroid.org/contact-us/1000

I think the PP's confusion comes from the opening post.

"The doctor there told me it was hypothyroidism and had got worse."

Then at the end the OP mentions hyperthyroidism.

@KissMyArt if it is Hashimoto's the OP could have symptoms and test results of both hypo and hyper thyroidism, depending on whether or not the antibodies are actively attacking the thyroid gland or not. GP should run the antibody tests asap, as it would be very helpful for the Endocrinologist to have sight of those.

The doctor at the hospital said it was hyperthyroidism.

Sorry! I did make that mistake and can see why it would have confused posters. Any way I can change it?