Another Blow To My Family: I was diagnosed with... - Thyroid UK

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Another Blow To My Family

Iphoenix profile image
20 Replies

I was diagnosed with hypothyroidism in 2010, my youngest daughter was diagnosed with hypothyroidism in 2014 and just last week my oldest daughter was diagnosed too.

I am so sad that I have passed this on to both my daughters, life is tough enough without having to have such an illness to combat when they are both in their 20's.

So here I am feeling a real failure of a mother because I passed on this insidious disease.

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Iphoenix profile image
Iphoenix
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20 Replies
Clutter profile image
Clutter

Iphoenix,

Would it have been better for them if they'd never been born? Hypothyroidism is usually manageable even if it means self-medicating to ensure the right dose and medication.

Iphoenix profile image
Iphoenix in reply to Clutter

Thanks Clutter, no it definitely wouldn't have been better if they had never been born. I just wish their futures were not complicated with trying to make sure they are on the right dosages and coming up against very unhelpful doctors and endocrinologists.

cjrsquared profile image
cjrsquared

I understand that you are sad your daughters have developed hypothyroidism but from the dates you give and their ages you were not diagnosed when pregnant or trying for children. Blaming yourself seems pointless exercise, much better to help them educate themselves and find the best medication regime for them to allow them to lead happy and productive lives. Many women who have hypothyroidism go on to have children of their own who may or may not also have thyroid problems. Please try and stop blaming yourself and focus on the way forward to a healthier and hopefully happier future. Good luck

Iphoenix profile image
Iphoenix in reply to cjrsquared

Thank you cjrsquared and yes you are right I had no idea what was to come when I was expecting them. My youngest daughter seems to be coping reasonably well on a low dose of levothryoxine and I hope this will always be the case.

LiaDiGee profile image
LiaDiGee

I understand completely how you feel. Long before I was diagnosed with hypothyroidism my young daughter (8 yrs old at the time) was healthy but wasn't growing as I thought she should. I researched everything I could to no avail. Finally at a doctors appt. when she was 10 (yes, 2 whole yrs later) it was discovered that she had a goiter!!! I was devastated. The endo put her .88 mcg of Synthroid. She never made up the height she lost and is now 33 yrs old and barely 5 ft tall. But because she has hashimotos desease I constantly worried about her because as you know symptoms are all over the place.

In Nov. of 2014 she was diagnosed with breast cancer!!! As you can imagine I was out of my mind with worry. She eventually went through horrible chemotherapy, radiation and surgery during 2015. It was the worst year of our lives. She had a very aggressive type of breast cancer called DCIS and HER2. That's when I really started researching Hashi's since there was no history of cancer on either side of her family. I did find a connection between Hashi's and Brest cancer because of the fact that Hashi's is an autoimmune disease (which I had never heard of). The medical community in the US where I live and the U.K. It seems are so behind in their knowledge of the proper treatment of thyroid problems, autoimmune disease etc. Do as much research as you can to protect your daughters, at this point we have to be our own advocates and certainly advocates for our children.

Iphoenix profile image
Iphoenix in reply to LiaDiGee

Hi Lia,

I am so sorry to hear about your daughter and the fact that she was only 8 years old when her problems began, you must have been absolutely frantic to deal with what she was going through. I cannot think of anything worse than to have to deal with breast cancer as well. I hope she makes a full recovery and has seen the end of her problems with cancer. Wishing you both a wonderful rest of your lives.

LiaDiGee profile image
LiaDiGee in reply to Iphoenix

Thank you so much Iphoenix. I appreciate your kind words. I hope things go well for you and your daughters as well.

Hopefully the medical community will catch up with these problems soon and we can all lead healthier lives.

Ruthi profile image
Ruthi

Its just unlucky. You can hardly blame yourself for something you knew nothing about.

If we all refrained from having children lest we inadvertently passed on a hidden disease there would be no-one left! Just concentrate on loving them - they will be fine!

Iphoenix profile image
Iphoenix in reply to Ruthi

When you put it like that Ruthi I feel truly grateful they are still relatively healthy! Thanks for those words of wisdom.

Understandable to feel weighed down, but maybe there is a bright side, that they are diagnosed young enough to get proper treatment in their pregnancies and to avoid the nutritional deficits in pregnancy that undiagnosed hypos may have, causing problems for the next generation.

Iphoenix profile image
Iphoenix in reply to

I am so glad you mentioned that part of it Aspmama, I hadn't thought of problems in pregnancy, as I missed out on that. I hope they won't have to pass it on when the time comes.

in reply to Iphoenix

I don't think the research is at a stage where they understand how it is passed on. But correct treatment in pregnancy, and getting nutrients up to high levels, including all the Bs, iron and D definitely will help enormously, both mother and child. Many of us gave birth while unknowingly sub clinical or with undetected antibodies or with low nutrients because of unknown associated absorption problems. Yours do not have that danger.

My niece developed it probably in teenage years, it was severe when found as a student, she is now on ndt and absolutely fine.

in reply to

So don't worry ... Your daughters can relax, and you have done well to find it so soon.

in reply to

And as for not having children because a gene may be passed on - that way madness and much evil lies. We all carry genes, recessive or dominant, which cause health problems. Already it would be possible to genetically test both partners before conception - and then what, multiply embryo testing, vast abortion rates, state licences to reproduce because of the cost to the tax payer of inherited diseases?

What matters in a human being in my view is the quality of the person, not the quality of their health.

LAHs profile image
LAHs in reply to

Good points Aspmama. You know we used to do some genetical testing years ago and, I am not sure if it was in the UK or US, but do you remember that we used to get tested for the gene for shortsightedness. Evidently, and I use that word with great trepidation, a short sighted couple could give birth to a blind child. Now, they do not do that anymore, I don't know why nor what happened to that research, maybe it was the ethics you point out that put an end to it.

alangardner profile image
alangardner

never forget that this problem [ hashi's or graves -- hyper/hypo--] can be easily managed , the only thing that is necessary is a good understanding endo & a reciprocal g.p. to get to the correct medication regime for each individual which can be done -- my lady is a prime example -- and understanding from those around you . when you and they get this right you will wonder what you ever worried about ..... it can be done !!!!!....hope this may help ....alan

Please stop beating yourself up about this hereditory disease. In my family on mum's side there is/was goitresneeding surgery and without, underactive sufferers with meds and overactive needing surgery. And they are the ones I only know about. There is also breast and bowel cancer in my family on dads side. We live with the cards we are dealt. Life is precious in all its colours Iphoenix, fight your corner with the medics to get the best care for your loving family. My best wishes to you.

silverfox7 profile image
silverfox7

Dont beat yourself up. We all pass things into our children and it's out of our control. Try to look at the positives. You can all look out for each other and share your positives. When I was diagnosed I knew no one with the ptoblem other than my GP but I couldn't cross that Doctor patient divide! Also we are in the age of the internet where we can discuss things online, find solutions etc and hopefully in time we will all get constructive help that has been so lacking for many of us when we started out. Sometimes we don't always recognise we have further symptoms but between you there will be first hand help and early suggestions within the family. Stay positive, stay well!

SuperL27 profile image
SuperL27

I was told last week by an endocrinologist that it actually comes from the paternal side of the family. I am hypo and my 11 year old has a goitre and is in the middle of tests. He said it will come from her fathers side of the family.

faith63 profile image
faith63

heredity is only a small portion. Food sensitivities, gut issues, which are immune system issues, are expressed as hashimotos in some family's. Google reversing autoimmune disease, mark hyman md, isabella wentz revered her hashi's, wrote a book and teaches you how to get well. Kelly Brogan ..so much good advise on how to reverse this and get off or stay off of thyroid meds. you don't have to except this fate.

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