My 19 year old granddaughter has a lot of problems and recently has been in and out of hospitals during this awful time with self-harm And severe anger issues. She is autistic, has OCD, ADD, and a number of other things going on. They are doing a thyroid panel on her tomorrow to see if anything is off there as I have had issues since I was 17 and my grandmother had goiter. I know t3, t4, and TSH are important aspects to look at As well as deficiencies in vitamins D and B12. What other results should be important that might help pinpoint issues that she has right around her monthly cycle. Not all the time. She also has tremors which were my first sign of a thyroid problem. We are hoping there is a thyroid issue as we don’t want to see her placed in a home.
I need your help!: My 19 year old granddaughter... - Thyroid UK
I need your help!
I’m no expert on autism, OCD and ADD but the symptoms she experiences that you have described sound like they could stem from other hormonal issues, possibly caused by a malfunctioning thyroid gland. I would check her estradiol/estrogen, testosterone, androgen and progesterone levels, as well as her fasting insulin and glucose levels. Having a thyroid disorder can cause low or high insulin levels, commonly accompanied by insulin resistance which, in turn, affects the body’s ability to regulate testosterone and androgen hormones (amongst others.) It’s possible that a severe imbalance in hormones is causing such mental, emotional and physical distress.
Thyroid disorders can cause anger, frustration, depression and even some severe forms of mental/emotional health issues. If a thyroid gland is not functioning optimally, it can cause the mind and body to “go out of whack.” It is possible to help get her hormones back to a healthier place but it does take time, patience and a lot of trial and error.
Thank you so much for responding. I am a wreck and my daughter and son in law are totally frazzled with insurance, State issues, and constantly having to deal with
All the red tape. One fax they had to send to the State was 72 pages long.
Not to be a Debbie downer but be prepared to face a lot of obstacles from public healthcare services and private ones alike. Thyroid diseases are still not really a “mainstream” illness, despite their discoveries having been made so long ago. They are still treated doubtfully and dismissively by most doctors.
I have been to several private doctors and not one of them really got to the root of my problem or were willing to prescribe natural desiccated thyroid or liothyronine medication. Sometimes they will even be difficult about prescribing levothyroxine (as you may already well know.) Don’t worry, though, a lot of us members here are ready to help if you have nowhere else to turn.
Thank you. We’re finding these things as we go.
She needs for thyroid testing
TSH, Ft4 and Ft3 plus BOTH TPO and TG antibodies
Vitamins
Vitamin D, folate, B12 and ferritin need testing
What’s her diet like?
Often very picky with autism
pharmacytimes.com/publicati...
ncbi.nlm.nih.gov/pmc/articl...
Hi, SlowDragon. Thanks for your reply. As of late she has been a picky eater, but before all this occurred she was a voracious eater who never gained much weight.
Can I ask if you are an administrator of the group.
who are you asking Bonnie? I think you haven't replied to the person, so they may not see it.
i may be wrong though...
I was asking LivingwithHT
Sorry if I got it wrong.
LivingWithHT - now tagged ! No this member is not part of Admin however there are many many members here with good information knowledge and information to share ...
Thank you Marz.
No she isn't Admin but she has a lot of knowledge and has advised me in the past.
Thank you Lora.
No, I’m not, but I have had hypothyroidism for most of my life and it caused me a LOT of issues over the years. Unfortunately, I only found out later in life that a malfunctioning/poorly functioning thyroid gland can cause the issues I have struggled with: like poor insulin production or receptivity, poor regulation of blood sugar, hormonal imbalances (high androgens and/or testosterone), clinical or non-clinical depression, mental and emotional distress, heavy period flows, intense pms symptoms, etc.
The body is very sensitive to a shift in hormones and, unfortunately for us females, our hormones are almost always shifting and it’s very easy to upset their balance.
Most doctors are ignorant and/or not considerate of the topic of thyroid diseases and their related issues. Both hypothyroidism and hyperthyroidism share a lot of common symptoms and they tend to be the precursors of Hashimoto’s and Graves’, respectively. Autism has been linked with thyroid disease many times in the past. You’d be surprised how many diseases go hand in hand with a thyroid illness.
I have not been officially diagnosed with Hashimoto’s but a lot of my hypothyroidism symptoms coincide with Hashimoto’s symptoms but since I don’t know of a genuinely good endocrinologist in or near my city, I have no choice but to do my own research a lot of the time and use trial and error as a way of getting closer to the root of my problems.
This forum, and many of the members on it, have also been a great help.
And no need to apologize...at least, not in my case 😊.
Thank you LWHT. Your response was so knowledgeable and eloquent that my daughter was hoping to list you as a professional advisor on one of the many forms she has to complete. 😊
Thank you, I appreciate that I was able to be of some help! However, I would not advise her to do that as I am not a licensed medical practitioner of any kind, just a fellow disease sufferer 😄. There are many more on this forum that would have even more information on the topic from their own similar unfortunate experiences.
First of all, I am very sorry your grandaughter has all of those awful symptoms. It's a huge worry for all the family and I do hope the medical professionals will do everything they can to resolve some of her symptoms.
When getting our thyroid hormones checked, blood draw should be at the very earliest, fasting (she can drink water) and if taking thyroid hormones take after blood test and not before. This gives a better result for the patient.
Thank you so much.
Thanks to all for your quick replies. If my heads on straight, I’ll try to remember to let you know how it went. Hugs to all of you.
Best of luck. It sounds very complex. I do hope you get to the bottom of it and can help her x
Thank you, Ruby.
Hello Bonnie!
I’m so sorry to hear all of this.
When I had similar issues I had to fight for them but I managed to get antibody testing done and it came back showing Graves’ disease. This then put all the puzzle pieces into place with what sounds like similar issues.
If you can I would insist on antibody blood tests to find out exactly what you might be dealing with xx
Thank you, Marlie.
Hi Bonnie, I've also had severe issues with hormones and similar mood swings/OCD although it's my physical symptoms that land me in hospital rather than mental. I would definitely suggest getting all hormones checked and even reading about PMDD especially if her symptoms are cyclical. It could be worth also keeping a diary of symptoms to see if they follow a pattern. I'm no expert but I've had a 4 year fight of regular hospital admissions and being housebound and eventually got the answers - I have Stage IV Endometriosis and Lyme Disease both of which hugely are linked to hormones. Good luck, be persistent and don't give up, it sounds like you're very determined! x
Thank you, vicstar. Sorry you have Lyme disease and endometriosis to boot. Hope you’re on the road to recovery from both.
Diet can have a major impact on autistic people. An autistic child appears in a documentary called "The Magic Pill". Her diet was changed to a low carb/ketogenic diet and her behaviour improved enormously. She was barely verbal at the start, but once her diet was changed she started to communicate more with her parents.
The film can be seen for free on Youtube, and I thought it was well worth the effort of sitting through it. The comments are generally positive too.
youtube.com/watch?v=6duhSjY...
Another thing that might be of interest...
Personal anecdote : I was tested for coeliac disease roughly ten years ago and all the tests came back negative. As a result I didn't think I needed to go gluten-free. However, five years after getting the negative coeliac result I decided to go gluten-free as a trial. After five days of being gluten free my extremely bad temper disappeared. My temper used to actually frighten me. But it's gone and hasn't come back.
We’ll definitely watch this. Thank you for the info.
Try and get a copy of Dr Marilyn Glenville's book on PMS. This helped my daughter enormously (her books on menopause are good too). Diet is key. If she has thyroid issues and autism she may well have a leaky gut. Going gluten and dairy free can help. For cognitive support (my son's on the spectrum) we found Igennus Neurobalance is helpful for autism and ADD. Plus, the very same nutrients (zinc, magnesium and p5p) help with PMS.
Thank you. We’ll look into this.
Thank you, Scrumbler!
Hi Bonnie - just wanted to send my well wishes to your granddaughter & hope she gets the right treatment soon. Like many of us on here we are still learning about thyroid conditions- I was early twenties when symptoms first started to show & I even had phychosis & was placed in a mental institution ! I was put on antipsychotics & it wasn’t until you couldn’t wake me which may I add went on for a few years they found finally i had hypothyroidism ! I am a 50 year old women & know how awful this disease plays with your mind & body ! Likewise hormones - too much oestrogen aswell as too little & progesterone/totesterone. can add to a multiple of symptoms. I am not experienced in her condition but wanted to plz ask if that’s ok - to please look at her medication aswell as get all her thyroid panels done - privately I would suggest so her T3 can be assessed. Most phychiatric meds’ especially antipsychotic cause problems with the thyroid - even some antidepressants & this is often overlooked sadly. She needs to be looked at from not just one expert but multiple specialists I believe & together they should all be wrkg to make her condition better. The people on here are lovely & v knowledgeable - I am battling again with my own health because the NHS endocrinologists are still so resilient in giving people the right treatment which all of us deserve ! Please let us know how she gets on cause we are all here for her ok x
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