Has everyone with hyperthyroidism get referred to an Enco?

[Screwball21]

I was diagnosed back in August this year with Graves but it was picked up by my GP who promptly gave me propranolol and 15mg carbimazole per day. I went back a few of weeks later and was told that my levels were fine and indeed, I felt tons better. I then went to see him for a third time and was asked if I wanted to have the radioiodine treatment, but I said no, and he said fine, come back in a year's time? I am just a bit concerned that everyone else seems to get referred to a Endo and was wondering whether I should go and see one too?

[jessi4]

I got referred straight away , I thought that was the norm for hyper. I have had ultrasound and antibody bloods done to diagnosed graves, but others could of had different experiences.

[Hidden]

Just replied to your other comment, before I saw this post.

GPs shouldn't manage Graves, you need an Endo, and I think your GP has demonstrated perfectly how incompetent and incapable he is of managing this condition. Grave's needs careful monitoring, Carbimazole is a strong drug and if you stayed on the same dose for a year with no monitoring and no titration goodness knows what state you'd be in.

This is the NICE guidelines on Management:

cks.nice.org.uk/hyperthyroi...

"How should I manage someone with overt hyperthyroidism?

Admit people with severe symptoms and signs of hyperthyroidism (for example fever, agitation, heart failure, confusion, or coma).

Refer all other people for specialist management. The urgency of the referral will depend on clinical judgement."

Just to be clear, when diagnosed with hyperthyroidism you're either admitted to hospital or you're referred to a Specialist, there isn't an option called "GP just wings it". If you read on, they are allowed to start treatment whilst waiting for the referral to come through, BUT they should only prescribe Carbimazole if they've sought Specialist advice.

This is what the NICE guidelines say about Monitoring:

cks.nice.org.uk/hyperthyroi...

"How should I monitor a person on carbimazole or propylthiouracil?

Ensure regular monitoring of free thyroxine (FT4) and thyroid-stimulating hormone (TSH) during and after treatment with carbimazole or propylthiouracil to guide secondary care adjustments to treatment and avoid iatrogenic hypothyroidism. Monitoring may be carried out in primary or secondary care.

Monitoring of titration regimen:

Initiation of carbimazole or propylthiouracil: monitor thyroid function every 4–6 weeks for the first few months.

Maintenance: less frequent monitoring is required (approximately every 3 months).

Dose reduction should be considered when the FT4 concentration falls to low-normal or below the normal range, or the serum TSH concentration increases (indicating development of hypothyroidism). Drug dose should be titrated against the free triiodothyronine (FT3) concentration in cases of triiodothyronine (T3) toxicosis.

Persistent TSH suppression should not prompt an increase in carbimazole or propylthiouracil dose."

Ask to be referred to an Endo immediately, I don't even understand how you've been diagnosed with Graves without seeing an Endo (I had an uptake scan). In the meantime, get copies of all your blood test results so that you can see whether or not you've gone hypo, and perhaps draw your GPs attention (and the practice manager) to the NICE guidelines.

Hampster

[Screwball21 in reply to Hidden]

Thank you so much Hampster for all your advice and I will definitely go back and see my GP and ask him to refer me to an Endo. I agree too that I found it very odd that he could simply diagnose Graves from a couple of blood tests and it has been bugging me for weeks, but clearly he can't 'just' simply diagnose it without me having an iodine uptake test.

[Hidden in reply to Screwball21]

He may just be going on the antibodies test result, I had positive antibodies first and then an uptake scan to confirm. Some people have ultrasound instead I think. Maybe others just get diagnosis based on antibodies? Either way it would be worth getting copies of all your results so far to see what has and hasn't been tested. And always get copies going forward. That's the best bit of advice I ever followed - always get copies.

[Screwball21 in reply to Hidden]

I have now got a copy of the first 2 test results. The 3rd result seems to have disappeared so I have asked for another blood test to be done, but in the meantime:

1st test: TSH 0.02, T4 50.2, serum free (whatever that means) 26.5. TPO antibody positive.

2nd test, 1 month later after starting carbimazole, TSH 0.13, T4 16.4, serum free 8.2. Triiodothyronine level. States 'much improved'.

It would have been good to have known the results of the 3rd test to see if the levels were being maintained, but as I said, I have booked in for another blood test so will post it as soon as I get the results.

How do my results compare and what do they really mean please?

[Hidden in reply to Screwball21]

Do you have the ranges? Usually in brackets after the results.

[Screwball21 in reply to Hidden]

Ok, the ranges were:

TSH: 0.35-3.50

T4: 7.8-17.0

Serum free: 3.4-6.0

Just noticed:

TPO was 162 and range is: 0.0-34.0

No TPO result on 2nd test, but obviously ranges remain the same on other items.

I hope that helps.

[Hidden in reply to Screwball21]

So the positive TPOAbs point to Graves, and I assume this is what your GP has based the diagnosis on, and both your T4 and T3 were elevated originally.

The second test looks good, your TSH has started to recover a bit already (mine stayed suppressed for ages), your T4 is back in range, but your T3 is still slightly hyper at 8.2 (top of range 6.0).

Given your fast response, at this point I would have expected a drop in Carbi dose, maybe to 10mg from the original 15mg. However, it's hard to say without the 3rd test results, and really it should be an Endo managing this titration. It's good that you've had some more tests done. If the T4 and/or the T3 have fallen below range (or are right at the bottom of the range) then you've gone hypo.

In theory, you are considered euthyroid when all your results (including TSH) are back in range. When you reach this point, you find a maintenance dose that keeps you stable. This is usually a small dose, 5mg or 2.5mg. And then the Endo decides when you're ready to come off it altogether.

Did you ask your GP about seeing an Endo?

[Screwball21 in reply to Hidden]

Thanks so much for the analysis as it has really helped me understand the results better. I haven't made an appointment to see my GP yet as I wanted to get another set of results to see how I was going. I did try reducing my carb dose myself down to 10mg but within a few days I started feeling hyper again so I've upped it to 15mg again. Oddly though, I do seem to have some hypo symptoms too, such as freezing cold hands, feeling cold when everyone seems to be ok, and gaining some weight. I do still feel a lot weaker than I used to and I seemed to lose a lot of muscle tone really quickly. I've started swimming again though to try and tone the muscles and I horse ride and walk quite a lot.

[elayneg]

Hi

I was referred to an Endo straight away. I loathe mine and don't want to go back to see her. My GP says they are not allowed to manage me. What she has said though is that if my bloods stay ok she will contact the Endo for expert advice but that I must stay under an endo. This will only work if the Endo agrees but since it takes her three months to notify my GP about changes in my drugs and any other changes it is just a waste of time and I do not see any point to it all. If anything the woman doesn't listen and has made me feel ten times worse.

[juby]

I understand why they send me to the endo, but I agree mine always repeats the same line about having to operate if it does not settle, which makes me feel like that is the only option. She told me she felt I would fall hyper again, but had no reason why she felt this, odd. My doctor is so much nicer to talk to.

[Yocdier]

For peace of mind you should. I do believe though that it's possible for your thyroid to fall back in line of normalcy if caught and treated promptly which you did.

[Screwball21]

Thanks Yocdier. Actually following on from my earlier post, I did drop my carbimazole dosage to 10mg a day at Christmas, and I have felt significantly better - no more hypo symptoms and a lot more energy. I have just had some more bloods taken today, as I want to see how my TSH is holding out. I have to say, on further reflection, at the moment, I see very little point in seeing an Endo as in reality, he or she would not really be able to do much more than my GP. If I was feeling quite poorly, then perhaps I would suggest it would be a good option, but whilst I feel as well as I do, I feel it would be totally unnecessary. I feel sure that they would only try to push me down the RAI route which really does not appeal at all.

[Jake123-]

Where u from I have graves but had my thyroid taken out and I still go hyper