Do you need to tell extended family about your diagnosis?

[rosserk]

Hi all just wandering about the need to tell extended family about being hypothyroid due to the genetic connection? I’m a very private person and I don’t want to share if it’s not necessary but worried they may need to know in case they are sympathetic and don’t know the cause?

[humanbean]

In my opinion - not if you don't want to.

[jimh111]

Relatives have a higher risk but hypothyroidism is a combination of genetics and environmental factors. As the relatives become more distant so the risk falls. I would tell first degree relatives (and ask them not to pass it on!) but not bother with others.

[Hidden]

I wish I had known my maternal aunt had it, in particular when I first went to my GP wondering if I had it. So on that basis I have told my niece who already has some histamine intolerance issues. I just said it seems to be in the family genes, thought it important especially as it can impact fertility.

[speckles70 in reply to Hidden]

hey solsticsess, just wondering about histamine intolerance? Not heard about this before. Please can u briefly tell me so I can watch for symptoms in my 2 daughters.

[RedApple Administrator in reply to speckles70]

speckles70, here's a link to information on histamine intolerance histamine-sensitivity.com

[speckles70 in reply to RedApple]

thanks x

[Marz]

If you suspect someone could have symptoms then it may well prevent problems further down the line .... sharing is caring 😊

[twinkleyt]

Yes, I feel you should inform your closest relatives for their sake. A friend of mine's mother had it and each of her 4 sisters developed it. My friend was the last of the female family who was 59 when she was diagnosed after putting on weight and thinking at first that the cause was giving up smoking. But knowing about her family history made her go to GP who confirmed it with a blood test.

Her GP said her family were lucky they had the Hypo gene and not the Hyper one which is more serious and difficult to treat.

However, I had the Hyper and my sister had Hypo with neither parents or grandparents having had Thyroid problems.

[hachiko]

I am not sharing that information.

Although if I would hear about someone having hypo symptoms, I'd advice them to get it checked, as common knowledge.

[helvella Administrator Thyroid UK]

I might want to keep it to myself, but I would find it very hard not to say something if I believed it relevant.

[helvella Administrator Thyroid UK in reply to helvella]

I also suggest looking at it the other way round. Would you have appreciated being told that relatives have thyroid disorders and thereby been in a better position to get diagnosed, understand treatment options, etc?

In my imagination I am seeing a television program which gathers a huge extended family together. Though every single one has a thyroid issue, not one knows that anyone else also suffers. Then the big reveal where everyone finds out... I think I hear "But why didn't you tell me?" louder than any other cry.

[Maggie0652]

Thyroid problems are abundant in my family, both hypo and hyper. I thought it was just on my mother’s side, with my mother having Graves’ disease. Both she and her sister had goitres. My maternal cousins have hypo like me but not as serious (they are ok with levothyroxine, I wasn’t). I lost touch with my father’s side of the family for 38 years but when we got back in touch, they have the more difficult to treat thyroid problems that i’ve got. Just 6 months ago I found out I’ve inherited the DIO2 genetic fault from both parents. 3 of my 5 children up to now have thyroid disorders (1 Graves, 2 Hashimoto’s)

I will share my diagnosis and experience with anybody because I don’t want them to suffer for years as I have and not know the reason or how to fix it.

[Creaky-Paddler]

I have only just been diagnosed and I posted it on my facebook profile so those close to me understood why I had been rough for so long and also so no-one could say they were not told. Amazingly I found a cousin and 3 friends also have it.

I'm glad I did, I got a whirl of support and reassurance from friends with the same.