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Graves disease (hyperthyroidism) waiting for referral

(17 Posts)
TropicPlunder Thu 21-Nov-19 11:03:22

Hello, I've recently been diagnosed by my GP with overactive thyroid caused by Graves disease. It's a relief, as I felt awful for several months (poor concentration, nervousness, irritability, depression, exhaustion). The GP said this will be treated at a hospital clinic. I've just received the appointment date and it's in 4 months time. Can I ask for your experiences? How long did you wait for Graves disease referral? Anybody start treatment with their GP? Anybody go private at this stage to speed things up?
I'm concerned as I feel incapable to do my job currently, and although my employers are understanding, I may have to leave my job in the meantime if I'm not likely to recover in 4-6 months.

ParkheadParadise Thu 21-Nov-19 11:16:38

I was diagnosed with graves disease when I was 23. When I seen the consultant for the first time, (I think about 4weeks from gp app) I was told the medication was not working for me my thyroid would have to be removed. By the time I seen him I was having trouble breathing.
Had op several weeks later. Was in for a week, off work for a month.
I have been left with a scar around my neck, which never healed properly.
I've never had any problems since.
This was 20yrs ago.
Can you go back to your GP and ask them to contact the hospital.

Reallybadidea Thu 21-Nov-19 11:23:50

A 4 month wait to start treatment is unacceptable IMO. I would go back to your GP and ask them to start you on a thyroid blocking drug immediately (carbimazole is generally the first option) or speed up the referral. They should be able to speak to the endocrine department for advice about dosage etc. If your heart rate is very high then you may need beta blockers too. It's really not OK to expect you to wait that long with uncontrolled hyperthyroidism, you're at risk of long-term damage.

TropicPlunder Thu 21-Nov-19 13:03:11

Thanks both, that's really helpful. I think I will go back to my GP. From reading up, I thought 4 months was too long (I'm a health professional, different discipline), but wasn't sure if I was just blindsided by my own needs and being upset about this!

79andnotout Fri 22-Nov-19 23:32:22

I had graves and waited six months to see the endocrinologist. The GP would have been a better option. Same result but faster. Go back to your GP and get carbimazol.

79andnotout Fri 22-Nov-19 23:38:10

Also be warned my graves responded well to carbimazole and I had a few years of being euthyroid without drugs but now I have Hashimotos and need levothyroxine for life. My sister is the same. So keep an eye on symptoms indefinitely. I thought I was menopausal (I'm in my late thirties) but it was my thyroid had become under active, and now I feel fine again with treatment.

TropicPlunder Sat 23-Nov-19 08:46:08

Thanks 79, did you get treatment from your GP while waiting for endocrine referral? Or you managed the 6 months without treatment?

79andnotout Sun 24-Nov-19 19:13:48

I had six months without treatment, which was foolish in retrospect. They did give me beta blockers though. I didn't feel great on those.

whatalovelytub Sun 24-Nov-19 19:26:24

That's awful- 4 months.
I was diagnosed earlier this year but luckily my sister also has it and I was well versed in what should be happening. GP didn't mention prescribing anything in the meantime but I asked for 10mg carbimazole to tide me over until the endocrinology appt and she was happy (ish) to oblige. Beta blockers too, for symptomatic relief.
It worked well and by the time I saw the endocrinologist 6 weeks later I was feeling so much better.

TropicPlunder Sun 24-Nov-19 20:18:53

Thankfully, the consultant has already written to my GP asking for carbimazole 10mg to be prescribed straight away. My appointment has also been moved forward to January. This all happened very quickly and I'm so relieved! Glad to hear that you felt better quickly lovely tub

HostessTrolley Tue 26-Nov-19 22:25:23

I was referred to the endocrinologist in early sept and got an appointment through for March (Kent). They started me on carbimazole and a beta blocker - propranolol. The carbimazole takes a few weeks to make any difference, but the beta blocker made me feel so much better quite quickly - I could function!

In the event I got a cancellation appointment and saw the consultant a couple of weeks ago, but waiting times are just madness x

12goldstars Tue 26-Nov-19 22:30:06

Tropic I was also diagnosed recently. I paid to see a private consultant and was seen the next day. He put me on his NHS books so I only had to pay the initial fee. He got me on medication that day and I’m gradually feeling better. It was worth every penny. The NHS referral from my doctor would have taken 3 months.

DogInATent Mon 02-Dec-19 17:15:06

Diagnosed at 40, referral was about 6-8 weeks but my GP started me on carbimazole straight away at the starting dose (50ug/day, from memory). Grave's is something that a GP can diagnose and ought to be able to start you on treatment. Expect very frequent appointments with the vampire to monitor the levels.

I was on-and-off stable for a couple of years with varying doses of carbimazole, including some periods of remission. But then it went to pot and I opted for I-131 treatment and I'm on levothyroxine.

ivykaty44 Thu 05-Dec-19 23:15:53

Once on carbimazole it will take a few weeks to have normal TSH levels, they either titrations or block and replace.

Don’t go handing in your notice or doing anything rash with your job - remember that your irritable, frustrated and anxious is all part of the illness

Wait a while and things will settle down

ivykaty44 Thu 05-Dec-19 23:22:04

In contrast to the person up thread who had a total thyroidectomy, I was in for 2 days, back to work 10 days later, running 3km after 11 days and cycling . No swimming due to scar. After 3 weeks scar had almost disappeared and now is very faint - no one notices it.

I’m on a set dose of thyroxine and that’s that oh and my BMI is around 22/23

MiniMum97 Thu 05-Dec-19 23:49:51

Please don't accept a Graves diagnosis without a TSI antibodies test. Lots of things can cause an overactive thyroid.. Be aware that Graves is often misdiagnosed when what's rally happening is Hashimoto which, particularly in the early stages can cause a hyper swing sometimes for many weeks/months as the thyroid is attached and thyroid hormone dumped in the body.

Just make sure that the cause of your hyperthyroidism is found (TSI abs test, if negative you need a thyroid scan to check for modules). A thyroid scan would also confirm hashis if this is present.

Your symptoms seem slightly strange and suggest that you may have some hypo symptoms? Al

I have both hypothyroidism and Graves' disease. (Not at the same time obviously!)

When my Graves' disease was active I shook, felt wired (lots of nervous energy but tired at the same time), anxious, severe hot flushes, horrendous racing heartbeat. V Loose stools. Starving all the time. My skin was lovely though!

When hypo I feel exhausted, can't regulate my temperature, depressed and anxious, brain fog/poor concentration - feel like brain is going at quarter speed. V dry skin and flares my skin issues (eczema and rosacea) Dizzy spells. Constipated. Weight gain.

rhowton Mon 23-Dec-19 22:25:56

If you can go privately, do so. Then they can refer you straight to nuclear medicine. You can use carbimizole to keep it normal but it is recommended to have Radioactive Iodine. X

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