Dear all, just needing a listening ear today, hope that’s ok with all you lovely and helpful people on this forum. We are understandably very upset today as our 20 year old daughter has voluntarily entered a psychiatric clinic today on the advice of her psychiatrist, due to increasing intrusive and suicidal thoughts, which she is struggling more and more to control. He has put her on an antidepressant Setraline since last Monday, slowly building up over the ca 10 days to 50mg. However, luckily so far no side effects or worsening of symptoms. She has been struggling for over a year with racing/ intrusive thoughts, anxiety, depression, panic attacks, cognitive issues ( memory, concentration), feeling cold, low BP, fatigue, dizziness, debilitating period pain with fatigue and breathlessness, short menstrual cycle 21-23 days), anemia. Possible ADHD but not diagnosed yet. She also has low a.m. cortisol, very high at midday and high in the evening. We have been keeping an eye on her nutrients and thyroid/ antibody levels, testing as per guidelines. I have Hashimotos as well as CFS, adrenal fatigue and MCAS. My sisters have EDS, PCOS and other undiagnosed anxiety/ ADHD issues. My mum has had thyroid cancer with full thyroidectomy, COPD and autoimmune hepatitis.
We‘ve tried the nutritional route specially as our daughter has been vegan for ca 2 Years. Tried to keep folate, B12, Vit D and ferritin optimal as per guidelines using supplementation. She’s tried Counseling, art therapy, now psychiatric support, running, walking, swimming, cycling…tryptophan, kelp supplementation due to low iodine ( probably as she is vegan), good activated B complex, amino acid complex, zinc, selenium, evening primrose with cod liver oil, Rhodiola and Ashwagandha for cortisol. All in recommended doses. We use only clean supplements.,
She has a dairy and egg intolerance and I suspect possible gluten intolerance as well, as she digestive system reacts to too much bread and she had diarrhea for ca 6 months on and off. This improved with the supplement Saccaromides Boulardii. However, she still eats a little gluten and hasn’t tried a longer period of GF diet.
Also had some bouts of cystitis and Candida this past year, although seems better now.
I do see a downward trend in her fT3 levels
but don’t know if these can explain all the symptoms, or at least some of them.
I will post all her results FYI after this post once I‘ve worked out how to do that. I haven’t managed to get all her results from June 2022 yet except for thyroid.
Thanks so much for reading and all the best🌸
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Swissgirl
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Dear Slow Dragon. Thank you for your response, I really appreciate it, 🌸 It helps just to share and be heard. We always test thyroid levels following forum protocol (fasting, early morning, no biotin 1 week before). Thyroid antibodies negative, all vitamins optimal, except Vit D we are always adjusting as tends to be a bit low, ferritin always drops and she needs infusions every 6-12 months, although supplementing daily.
Iodine was tested and very low, hence kelp supplementation.
I do see a downward trend in fT3, although TSH from age 18 onwards is between 1-2, so seems OK. Teenage results re TSH I know are not comparable to adults'.
Thanks for help with posting images. Have put up all available results. Have been tracking nutrients and thyroid since age 15😀
Dear Radd, thank you so much for caring and taking the time to reply. It helps just to know that people are thinking of you. We are doing the best we can to support our daughter but it’s not easy, especially as I have also been very ill for the past 2 years.
But the only way is forwards, even when the hill gets steeper.
My heart goes out to your daughter, you and your family.
I ended up in a psychiatric unit in 1994 and again in 2006, with many of the same symptoms as your daughter. By then I already knew I had an under active thyroid but my medication was far too low and the incorrect type, ie I was on T4 and I needed T3. Psychiatrists didn't have a clue about thyroid conditions.
It's wonderful that you are doing all the tests.
In my own case, it was a slow process of unraveling what was going on.
My mental health issues started to resolve once I was on an adequate dose of T3 and all my vitamins & minerals were optimal. But I was still getting bad depressions & anxiety.
You have a lot of family members with hypo, so it could well be genetic. Have you done the DIO2 test to check to see if your daughter has the genetic mutated thyroid gene (also yourself)?
It was a massive stepping stone for me to know that my under active thyroid is genetic. With a mutated DIO2 thyroid gene, an MTHFR mutated gene is frequently associated.
Once I knew there was a high probability of having the mutated MTHFR gene, I started on Methylated multi B vitamins. Since taking the methylated version of multi B's my mental health has improved massively.
I apologise that I have written my own story, but I hope it just might help you to find some answers.
Dear Marigold22. Thank you so much for your lovely words and helpful information you kindly took the time to write. And thank you for sharing your personal story, I appreciate it and you don't have to apologise at all! I am very sorry to hear that you had to be admitted to a psychiatric unit twice, and am very glad that your mental health is much more stable.
I am keeping a very close eye with regular testing on my daughter's thyroid levels as well as essential nutrients. Especially also due to her family history. I have noticed a slow decline in her fT3 levels in the past year, but I don't know if this is the root cause, as she is not showing any of the 'typical' issues associated with underactive thyroid. I know there are around 300 different symptoms, and maybe in her case it's affecting her mental health more than her physical. Although she has had very low BP, fatigue and dizziness. This could also be due to low cortisol in the mornings though.
Thanks for the info on the genetic testing. We haven't done any at all, as we live in Switzerland and the costs are prohibitive through our GP, and I don't know of any private companies that we could order the testing directly from. I am however aware of the DIO2 and MTHFR genes, as I have done extensive reading in this area due to my own health issues.
We both take the active version of the B vitamins (Life Extension) and our daughter has just upped her dose. I am also going to buy sublingual B12 to top up as her levels are suboptimal.
She is a vegan and I have been doing lots of research on the use of amino acids for mental health, such as tryptophan (which we tried but it unfortunately didn't help much), 5HTP, GABA, etc. I've managed to convince her that if she isn't willing to switch to some animal protein, that she at least takes the 9 essential amino acids daily in supplement form, so hopefully this will also help a bit.
Thanks again and I hope your health continues to stay stable. All the best🌸
oh Swissgirl I am so so sorry to hear about your daughter. Pyschiatrists are meant to look at the thyroid link in mental health, especially with your family history. However whether modern ones do I dont know. I do remember my under treatment of my thyroid affecting my mental health and I ended up in counselling. The counsellor told me he was sure my depression was linked to a physical illness and I needed to see a specialist to get it addressed. I did and he was right, I was grossly under treated for my hypothyroidism. All gradually resolved on an optiumum combination of thyroid hormones dose.
I really hope they get to the bottom of your daughters ill health and a way forward is gound. Big hugs xxx
Dear waveylines. Thank you so much for your kind words and thoughts. I am very sorry to hear that you too had to battle to stabilize your mental health. How refreshing and also fortunate that your counsellor was on top of the link to thyroid.
One of my first thoughts I had with our daughter was thyroid and adrenals and Ihad all her values checked regularly and last tim in June this year. No antibodies but her fT3 values have slightly dropped each time they were tested, and her cortisol was very high at lunchtime and elevated during the evening. She went though a period of high stress for about a year before she started with fatigue, dizziness, low BP and issues with mental health. I was shocked that at the clinic they only checked her TSH! To be fair though, they did check her key nutrients and even did a full iron panel, as she is a vegan. So not completely terrible. Once she is out of the clinic I’ll have a full thyroid panel done again and if the fT3 keeps on dropping, this may be a sign her thyroid is struggling, although her TSH is always between 1-2 or even slightly below.
Thanks again, good health to you and a big hug back to you too xx🌸
Add b12 into the mix too..... low B12 also causes mental health problems. The range is far too wide so you can be in range but suffering. Look up B12d.org.
There is increasing evidence that low carb and keto diets improve mental health. Carb intolerance has been linked to psychosis. Vegan diets are often processed ingredients rather than real food - and high in carbs/sugars. Psychiatric medication side effects often increase weight gain and hunger. This link might be of interest to you.
Lots of self care and compassion to yourself - as a mother myself, I know how deeply painful this is for you.
Hi Lunatha. Thanks so much for your reply and the info - really appreciate it. Our daughter is a vegan, but very aware about the importance of the balance of protein and carbs, as it affects her blood sugar otherwise and her mum and dad are also always going on about it She does her own very healthy cooking with lots of beans, whole grains, protein and veggies, and tries to eat as little processed food as possible. She is now eating eggs again (which I am glad about) so not strictly vegan anymore I am also giving her essential amino acids to help, as she was on no animal protein for quite a while. Luckily, she has had no obvious side effects so far from the SSRI - she is on the lowest dose possible at the moment.
Yes, you are right about the compassion and care, and how deeply painful this is. I have been off sick for 2 years and have Hashis, MCAS, CFS and Fibro, which is also quite a lot to manage in itself, and the situation with our daughter has brought my husband and I to the absolute boundaries of what we can bear. However, she is slowly on the road to recovery - I will write an update soon for everyone.
All the best and hope you are staying well. 🌸
Swissgirl, bless you and your amazing efforts to advocate for your daughter!
I know but a shred of information compared to the forum’s veterans but I can speak from the vantage point of the suicidal teenager, as I was one. I had all the symptoms you describe your daughter as having, it started for me at 13. It wasn’t until I was 21 that my tsh crept out of range and warranted investigation, before that I had no antibodies (and never have had) and in-range results - an ultrasound at 21 showed years of damage to my thyroid and 1/3 left of health tissue. My bloods had been covering it up.
I share this to support my suggestion that if I were you and funds are available I would get a thyroid ultrasound done.
For whatever it is worth, Duloxetine (SNRI) pulled me through when many other formulations didn’t.
I am so sorry to hear of your daughter….I have been there too and it is deeply distressing. My daughter was very well supported by the mental health team and she is now much stronger.
I too can only offer very limited insight compared to the veterans of this site, though it is well worth looking at the DIO2 gene as low mood is highly correlated with it and T3 requirement is indicated.
It is one bit of evidence that can shift an endocrinologist to prescribing T3.
I'm so sorry to hear about your daughter's struggles. You are obviously a very caring parent, but it must be so difficult. As you are taking a broad approach and leaving no stone unturned, I thought I'd mention a psychiatrist by the name of Kelly Brogan. I know nothing about her and can't vouch for her, but I know she uses a holistic approach including the thyroid link, so perhaps it would be of interest.
I am so very sorry to hear what is happening to your daughter. Others will be more experienced and able to help, but I would just like you to know that I am thinking of you and of her. As a mother you will be feeling her pain. With love and blessings, Kx
I am sorry to hear of your daughter's condition and she should have a good team of doctors that will be able to help her. I am not familiar with the levels and test results you have shown but Testesterone is high which is a sign of PCOS which can also cause mental health problems. My daughter suffered in similar circumstances plus panic attacks at 17 as female hormones increase and take over, a mini pill helped. DHEA stands out but I am not very familiar with this, it is to do with hormone production and adrenal gland related.
her 2nd cortisol level is way to high. Psychiatric unit will not know how to treat. Would find out if an endocrinologist is on staff and request full evaluation.
Hi Swissgirl, my thoughts are with you and your daughter.
Something to consider;
My wife suffered with Psychosis for over 25 years with audible voices all day, every day and occasional visual hallucinations.
7 ODs in 8 years, all on the meds she was prescribed.
After many, many years of therapy and drugs, through our own research we finally found out she was B12 deficient and after self injecting (due to crap GP) she has now been psychosis free for 20 months.
it has been truly life changing for her but to go from having a constant cacophony of voices in her head for every waking minute for over 25 years to having none at all took her a while to get used to.
She now just self injects once a week instead of every other day and hopefully when we get her Thyroid under control a bit better (more battling GPs) she might be able to reduce that further.
Its been such a huge battle against rather than with the Doctors though and everything we have learnt is from our own research (like this forum) and sheer bloody mindedness.
At first the Doctors said it was probably a placebo effect but now after nearly 2 years psychosis free theyve dropped that line. Still wont prescribe it to her though......
This is incredible, good for you guys. Isn’t it frustrating at how ignorant and truly arrogant some of our dear NHS are. A lifetime of ill health can’t be replaced or won back, a class action against GPs from those under medicated to the point of crisis would galvanise a few minds. What is it going to take. It makes me so cross.
I’m so sorry you and your family are going through this……. Our family had a similar experience with my relative, who was vegan/vegetarian for many years and misdiagnosed with ME/CFS, at one time in a wheelchair.
We only later discovered that our family does not easily absorb many vitamins (four have thyroid disease and three have PA/B12 deficiency). I would recommend joining and speaking to Martyn Hooper, Chairman of the Pernicious Anaemia Society, based in Bridgend, Wales:
I also found the book, “A Mind of your Own”, by Dr Kelly Brogan, very interesting - a highly qualified U.S. psychiatrist, she is the only one I’ve come across, who obviously understands the root cause (has actually read all the research) of the psychiatric symptoms resulting from a severe, long standing B12 deficiency after years on a vegetarian/vegan diet. Here is an excerpt:
"It's Epigenetic"
"One of my favourite practice changing papers was a 2003 case report of a lifelong vegetarian who experienced a month and a half of progressively worsening depression. Eventually she began to hear voices and feel paranoid. The fifty two year old post menopausal woman ultimately became what's called catatonic, which meant she was awake and alive but non responsive, and largely in an otherwise vegetative state. One would automatically assume this was a serious case of severe pathology. She was treated with electroconvulsive therapy and antipsychotics to no avail.
And then she was transferred to another hospital, where they happened to test her levels of B12. They found she was a tad on the low side and, after receiving a vitamin B12 injection, she fully recovered. Coincidence ? I think not. While it may be one of the more extreme cases, it's emblematic of how a simple but critical deficiency can be at the causal root of psychiatric manifestations. Later on we'll see how vitamin B12 deficiency has long been implicated in the development of depression. It's a classic example of how we are not just puppets at the mercy of our encoded DNA, but rather products of the complex interactions between our genes and our environment than our inheritance. As I like to remind my patients, depression is epigenetic, not genetic. "
There are also many research papers, recommended books, films etc. on the psychiatric and neurological effects of PA/B12 deficiency on Tracey Whitty’s website, eg. excellent books by Dr J Chandy and Sally Pacholok, as well as the HU forum on Pernicious Anaemia.
B12 deficiency is known to be misdiagnosed as CFS/fibromyalgia.
I also wanted to add that such a thing as 'functional b12 deficiency' exists. It's where your serum b12 levels can look fine but it's not getting into the cells. Not much is understood about this condition. I have this - my levels would go up on b12 tablets, but it wasn't doing anything. I had progressively worsening b12 deficiency symptoms including some neuropsychiatric ones, such as paranoia and intrusive thoughts, even when taking several 1000mcg b12 sublingual tablets for several decades. A trial of injections proved it was functional b12 deficiency. I also need to take 5mg folic acid a day, as it helps b12 do its jobs, but also because otherwise my mental issues instantly flare up and i get mouth sores.
Dear Thyroid forum friends. I hope that this message will reach all of you who have responded so kindly, warmly and helpfully, and have given your time for us. We really appreciate the compassion and knowledge shared on this forum. I will try to respond to each of you individually. And thank you so much for all the useful resources and info, which I will work my way through. Thank goodness for the internet and forums like this🍀
As you can imagine we are all a bit overwhelmed right now. Today is my husband’s birthday and he is so upset, he has needed to be alone out walking yesterday and today. I fully understand but so wish we could share our troubles together. I know that each person has to deal with things in their own way, space and time, but it does make me feel very lonely, not supported or understood. I am usually a pretty tough person who does not moan over their lot in life. But we have had a very challenging time the past 2 years as I have been ill with Hashis, and newly diagnosed MCAS, CFS and Fibro and lost my job last year due to being so ill for so long.
There is a limit to how much one can take, and I think we are reaching ours.
So you have all been lifesavers. Thank you from the bottom of my heart. Big hugs, warm wishes and most importantly the best health possible. For without it we lose one of the most important gifts in life. ❤️
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She does her own very healthy cooking with lots of beans, whole grains, protein and veggies, and tries to eat as little processed food as possible. She is now eating eggs again (which I am glad about) so not strictly vegan anymore
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Help for Overcoming Thyroid Resistance
