High IGF-1 Anyone ? : Advice on High IGF-1 with... - Thyroid UK

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High IGF-1 Anyone ?

MrsClanger profile image
8 Replies

Advice on High IGF-1 with normal GH ?

I have hashimotos, and my endo said my IGF-1 was high , so he did a GH supression test, to rule out acromegaly, the test came back normal, so hes not advised any further action..

Can anyone advise why my IGF-1 is high, and whether i should be concerned ?

My tsh is supressed , my t3 and T4 are all ok , T3 around mid range, T3 high in range. The endo has agreed to start me on T3 , but i have started myself on a low dose a week ago,( reduced T3 by 25 mcg added 7 mcg t3 ) ive not noticed any change.

I also have bradycardia, heart rate was 42bpm in december, but had a recent 7 day ecg , but no news from cardio so im guessing it came back low normal , it seems the cold weather causes these episodes.

Should i increase the dose of T3?.. what does the high IGF1 mean if it is not acromegaly?

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MrsClanger
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8 Replies
radd profile image
radd

MrsClanger,

Sorry no-one has responded with their experiences.

I have come across this article claiming that 'High IGF-I levels imply active acromegaly even when GH levels are 'normal.' I think I would be asking endo to have this followed up in say 6 months.

nature.com/articles/ncpendm...

Other members have already answered on your other post regarding raising T3 dose.

MrsClanger profile image
MrsClanger in reply to radd

Hi. Thank you., yes I read this too when researching. I have just started on T 3 and hoping this may help with this and the heart issue too.. Which is another thing I'm not understanding, but maybe both are due to unmanaged thyroid?I'm hoping to speak to endo this week so will ask him to re test and alert him to the info above.

Thank you fir replying.

radd profile image
radd in reply to MrsClanger

Mrs Clanger,

Another member recently posted this interesting paper that informs how thyroid hormone influences the heart..

gponline.com/endocrinology-...

MrsClanger profile image
MrsClanger in reply to radd

Thank you.. Will have a look next to my ecg results.

Wired123 profile image
Wired123

I’m having my IGF-1 test by my Endo, I see the Endo again in a couple of weeks with results and can share if there’s anything I learn from the conversation

MrsClanger profile image
MrsClanger in reply to Wired123

Yes please do get in touch by pm if you want I really want to understand more about this.

Wired123 profile image
Wired123

If I forget feel free to PM me. I’ll try and post publicly as well so everyone benefits.

wgator1508 profile image
wgator1508

Hello, I had acromegaly 3 years ago, it was bad. Had low T and symptoms were Tinnitus, peripheral neuropathy(bad nerve pains arms/legs), joint pain, and many skipped heart beats(PAC). Had to get 3 MRIS (pituitary tumor very small, 2 mm) and go to 2 different neuro-surgeons. 1st one said did not think it’s tumor, 2nd one did. IGF1 was elevated. Had surgery 2 1/2 years ago and successfully removed tumor. IGF1 has been in normal range for over 2 years now. Heart beats normal with no PAC NOW. Nerves healed on all of body except part of feet( still hoping they will be last to heal), no joint pain. I would suggest a brain MRI. There also are rare cases of acromegaly with no pituitary tumor but a tumor on liver or kidney causing high IGF1. Can get a body cat scan to check on that. Still have the Tinnitus, that never got better.

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