Hello, new user here. My wife has Graves, I'm ... - Thyroid UK

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Hello, new user here. My wife has Graves, I'm trying to find out about it.

flap_jack profile image
9 Replies

My wife unexpectedly lost weight earlier in the year, and had hand tremors and hot flushes. She had had a persistent virus. A blood test showed FT4 36, FT3 12 and TSH 0.02. DIagnosis of hyperthyroid, refer to endo.

Two further tests show the FT4 (36 to 33 then to 30) and FT3 (12 to 10 to 9) going down (TSH still 0.02) and her symptoms have gone. She says she feel recovered. No antibodies detected.

The endo is insistent she starts 20mg carbi despite her asking to start low (she feels OK and is running her own business, and doesn't want side effects to interfere with it).

She would prefer she waited to see if the trend continues down.

Question is, Is that likely ?

Thanks

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flap_jack profile image
flap_jack
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9 Replies
galathea profile image
galathea

Hi, yes it is likely, If she has no antibodies showing at the moment. ( this can change ). It is impossible to say why she went hyper. If she has graves, then the carbimazole might be needed if she has a repeat occurrence, but if she has hashimotos then the hyper could well be a blip as her thyroid puts out more thyroid hormones in an effort to ward off an attack....

If it was me, I would watch and wait.... She will be able to tell if she is going hyper again, but treatment with carbimazole seems rather premature. Treatment with beta blockers to alleviate symptoms is one way of dealing with it.

The response of the pituary in reducing the tsh when there was too much t3 and t4 in the system, is the correct one. In Graves' disease, tsi mimics tsh and so the thyroid keeps on producing hormones.

Whatever happens, don't let the endos convince her that getting rid of her thyroid and taking a tablet every day is a good idea..... Its not.... Plenty of people on here will attest to that.

G x

flap_jack profile image
flap_jack

Thanks. She doesn't need beta blockers as heart rate is 65 and BP 100/60. Currently she has plenty of energy (cycles for a hour a day) and sleeps well. If it wasn't for the bloods we'd think nothing was wrong. I seem much more worried than she does...

Is it also possible she would take the carbi and have no side effects ?

Sorry for all the questions. Thanks.

galathea profile image
galathea in reply toflap_jack

Side effects from carbimazole are numerous and well documented.... netdoctor.co.uk/medicines/n...

Of course she may not get any, but if she doesn't take it she definitely won't get any.

Interestingly, I have been watching which meds are the worse for side effects, it seems that anything with a z or an x in the name needs watching! :).

helvella profile image
helvellaAdministrator

Which antibodies did they test for?

Graves itself results from TSH-receptor antibodies. But you often find Thyroid Peroxidase antibodies and/or Thyroglobulin antibodies in Graves sufferers.

Rod

flap_jack profile image
flap_jack

Results were on email from endo, just said 'antibodies'. Graves was diagnosed from an uptake scan, which showed uptake throughout the thyroid.

Issy profile image
Issy

Surely with a normal T3 she cannot be hyper? The TSH is pretty irrelevant - its the T3 getting to the cells that is relevant?

Issy profile image
Issy

Ask endo for the full results AND the reference ranges. You are entitled to these

valjo18 profile image
valjo18

I absolutely agree with galathea. After years of being hyper on and off the endo convinced me that RAI was the way to go following a scan. It wasn't! That was some eleven years ago. It destroyed my thyroid completely and I have had years of struggling with all the usual hypo symptoms in varying degrees. Still not on an even keel. At least when I was hyper I could recognise it quickly and get the necessary meds to keep it under control. One word of advice though about beta blockers, for me they triggered asthma so please be watchful if your wife is prescribed them. After I developed the asthma the gp used to prescribe a small dose of Diazepam to keep palps, etc under control, as well as the Carbimazole.

I wish you well.

Val

tilly83 profile image
tilly83

Hi Jack,

By the look of her results I would watch and wait. Get her to have them monthly and if in between she doesn't feel right then see GP again. My T4 went to nearly 70. GP wanted me on block and replace but having read on that decided against and went for up and down titration of drug (balancing dosage with monthly blood tests), I have come down from 40mg carb to 2.5mg carb and this week stopped taking. I take note of how body is. Find I get palpitations if I drink so very much more careful with this. Ditched caffeine completely, given up wheat (honestly easy and feel much better) follow Low Fod map diet (vaguely, not strictly!) focus on improving gut health so take L-glutamine, Aloe Vera and a fair few other supplements. Have monthly acupuncture and massage. I feel I have some control and feel well enough to start gentle jogging again - I had lost a stone with Graves and now put it all back on so just being that boring thing... sensible! x

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