13 years going on 50

Hey everyone, I am in search of any advice or help you can gI've for my niece and my family. I fear she is going to die at a very young age because the Dr's won't listen. Now I have several brothers and sisters all of wich have thyroid disorders, as well as my children , my sisters children, and a few cases of hashimotos. Now my sisters child who is now 13 has had nothing but problems since she was about 3, her spine twisted and curved a curled to 180 degrees in short period of time it was causeing stress to her heart and lungs and they had to go in using the strength of the men and break it straight then put a rod in it from her neck to her tailbone.the past 6 or 7 years they said she had failure to thrive, her anxiety is unreal . The cries quietly all the time and is always in pain. She's very soft spoken keeps to herself alot. She starting to have more issues with her bones and the rod they put in her. She has been tested for thyroid disorders but they say it's fine but I know they are wrong. It's not gonna just skip the weakest child out of all of us and she has all the main symptoms.they say at her rate she won't live past 25yrs old. There has got to be better testing or something I can do to prove she needs treatment for thytoid. If anyone has had a child like this please let me know so I can show other cases possibly. Thankyou for your time

11 Replies

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  • rockenbrenda I am sorry to hear about your niece. I don't know any other children like this so can't help there.

    But what I would advise is that your sister goes to her surgery and gets copies of all your niece's thyroid tests. She is entitled to them under the Data Protection Act so tell her not to be fobbed off. There might be a small charge for a printed copy. Make sure she gets reference ranges for the tests too.

    She may have been told they are 'fine' but that doesn't mean anything. As long as the numbers are even 0.1 within the range some doctors say that is normal or fine, but it isn't. With such a strong family history of thyroid disease there is a possibility that your niece may have it too.

    Once your sister has the blood test results come back and make a new post, giving details of the results with the reference ranges, and members will come along with advice and suggestions for you.

  • RockenBrenda, this is just a thought which may or may not be helpful.

    Has she been tested for coeliac disease? It's just because you said 'failure to thrive' and it reminded me that I read that Coeliac disease was discovered during wartime (don't know where, or which war) when wheat was in short supply and was sent to the troops, leaving the country people without. A local doctor noticed that children who had failed to thrive improved on this wheat free diet, and so he suggested that they might be sensitive to wheat.

    Following that thought - many of us with Hashimotos find a gluten free diet helps our symptoms, so there's a thyroid connection there.

    Can your niece get a full thyroid test, such as those from Blue Horizon, see this page from the ThyroidUK website

    thyroiduk.org.uk/tuk/testin...

    Family history such as yours is a strong pointer to thyroid problems. These tests will give you far more information than you can get from most GPs.

    If you are not in the UK there may be labs where you live.

    Best wishes to you and your family. I hope you get more help.

  • Poor baby, it sounds like torture. If they have ruled out a thyroid disorder, what have they ruled in. They must have done other tests. Anthea has an idea that you could implement right away. What is her vitamin D level? It's very important for the immune system and calcium. Has she had a dexa scan for her bone issues? They are losing valuable time if they can't figure this out soon. Have they just given up on her?

    As brenda suggests, you could check Genova Diagnostics, there is a European Genova I think and do some of your own investigation.

    And please get those thyroid results with ranges.

  • Hi Rockenbrenda,

    You have to find a doctor that is going to listen to you. I have myself been to numerous doctors and you will find that doctor. It truly is sad that we have to go through that. What she is feeling and what is happening is real and there is a reason for it and there is an answer. I did find a doctor myself but she has passed on and now I'm in search of one now. Try googling doctors who believe in armour, nature throid and other compounds as there are so many doctors who do not support it as it's not fda approved -- so I'm told. I had one doctor have me on levo for years and it never did anything for me and I got worse. I decided to find another doctor who was going to spend some time with me and I did. My doctor I had spent 3 hours with me on my first visit and you truly need someone like this. I pray for help very soon for you. Keep us posted. Lots of Love!!!!!

  • It can be very difficult to 'persuade' the medical profession to check thyroid issues out properly as it relies too heavily on TSH levels. Research and proper understanding has proven this an incorrect policy. Hopefully you might find some help in either or both of these documents - make sure your doctor reads them by booking a double appointment so you can wait and get an answer before you leave ncbi.nlm.nih.gov/pmc/articl... & nahypothyroidism.org/thyroi...

    Take a look at ginger and turmeric for pain control. They are very powerful and better than many prescription only painkillers. There are other powerful natural painkillers if you want to investigate further eg sour cherries.

    Depending on what the bone issues are you might also look into live kefir. Research had proven it to help with, even repair, a number of skeletal issues. In fact it helps with all sorts of health problems.

  • My darling this sounds heartbreaking. Please watch this fantastic video - the guy describes a child such as your niece. Well done for not giving up on her, and I wish you all the best in finding a doctor who listens.

  • Thank you so much for sharing this video, it is an amazing eye opener.

  • I agree with the previous poster that it's essential to take a whole body systemic view. I expect that it'd be worth trying a few dietary changes. Look up Vitamin K2 online and how to get more of it (better gut health applies here). This overlooked vitamin will direct Calcium to the bones so that they grow and repair themselves properly and it keeps Calcium away from soft tissues and muscle which is what is so often happening to people with bone problems, heart failure, diabetes, osteoporosis, dental issues, gall stones, prostate cancer and many many other Western ailments.

  • Thankyou so much everyone for your input. And I did watch the video. But I don't really agree with everything he said. To suggest it's related to our environment would be wrong. My son was adopted at birth and raised in a different state with no contact from me yet he has the same thyroid issues the rest of us have wich is thirteen family members so far who are all linked only to my mothers side of the family. Cousin we were very close to and raised around have no thyroid problems but they are on my dad's side. Don't get me wrong the guy in the video had a lot of useful information. I just don't agree with the reason he gives the thyroid for not functioning properly. Plus my niece started having these issues at two years old. Seems awfly young to be stressed out to the point where she is. I'm going to get a copy of her blood work and post it soon as I get to my sisters. And thanks again for the input

  • Hi rockenbrenda and 7658,

    With the number of people in your families who have thyroid problems it points very strongly to a genetic cause. The likely cause is Impaired Sensitivity to Thyroid Hormone (more often known as Thyroid Hormone Resistance). It requires very high T3 levels in the body to overcome the resistance. I have been researching this for many years, it is common but rarely diagnosed and can be successfully treated.

    I will send a personal message to you both.

  • I am so sorry to hear of your niece suffering so much.

    I knew someone with a twisted spine who had a metal rod inserted, but my chiropractor told me that a twisted spine was caused by the muscles each side of the spine pulling unequally for whatever reason, and a good chiro could make a big difference. I realise that a chiro might be too late in your niece's situation, but a top chiro may help with the pain surrounding her spine. (Ignore most GP's negative opinions of them)

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