Further to posts y’day re: “thyroid madness”, my 45yo daughter went into hospital last night on a Section 2 detention for the second time in a few weeks.
She has a diagnosis of BPD, PTSD , and other complex nuances of mental illness - but has NEVER before lost capacity or presented with the symptoms she is currently showing.
During her first Section 3 weeks ago I was ghosted by everyone in the MH and SW teams - which they now regret.
Her admission last night was more formally conducted and it is noted that I shall be part of her review meetings. It is also noted that I have requested that her medical needs are addressed and to include full thyroid panel test (both parents have thyroid disease), testing for menopause status, full vitamin testing.
My question is :
Do you have any advice on how and what else I should be doing? As this is early days in her period of assessment, I don’t want to miss the opportunity of ensuring nothing is missed.
I am in no doubt that she has an as yet undiagnosed illness and want to ensure there is an holistic approach to this discovery phase of her assessment. I am not pre-judging results - but - good diagnosis includes elimination.
Many thanks for kind posts yesterday. Any advice on this question appreciated.
FYI: I have logged a formal complaint on the treating Trust, Police and my MP that she was allowed to leave hospital on 10 October to make her own way home 12 miles away, with no cash, no credit card, no mobile and no shoes - they did not inform me. She was picked up about 7 hours later after a 999 call by a member of the public advising of a ‘very distressed woman walking in the middle of the road with no shows on’. So - you get the measure of the incompetency I am battling.
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HandS
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I’m appalled and full of admiration for you. Very well done advocating for your daughter. A close friend is in a similar process with her older sister but receiving the ‘TSH in range’ routine from medics.
Ensure you see results and ranges, FT3 might be hard to come by and private testing unlikely I’m guessing while sectioned.
Can you ask Psych to speak to Endocrinology ?
Sending hugs and best wishes for a swift identification of her needs. 🌱
Thank you / and good point! I will request copies of all her test results with lab ranges ….i intend to put everything in writing to her named consultant later today.
I could break down in a nanosecond but hold onto my mantra “stiffen the sinews and summon the blood…..l
Make sure they include FULL Thyroid testing including thyroid antibodies, vitamin D, folate, B12, full iron panel test including ferritin, coeliac test too
ensure testing is early morning, ideally around 9am and only water to drink between waking and test
There is s book that may offer you supportive suggestions.... The Art and Science of Thyroid Supplemention for the treatment of BPD - by Tammas Kelly MD.
I was unable to post the link from amazon 😒 I have not read the book.
So pleased you are able to support your daughter on her journey. I have often read that thyroid testing is/was routine in MH and T3 was prescribed. This has probably changed as it has for so many....
You are doing really well there HandS. I totally admire your advocating for your daughter. This is just terrible what you are up against. Who on Earth would allow a woman who had just been what she had been through and let her go without an ounce of support? Is this really where we have got to? It’s foul. I am ashamed of our hard fought fight for humanity being utterly squandered. You are a gem.
This may be hard to read, but remember, you can do no good for yourself or your loved one if you are not taking care of yourself.
Give yourself space to ‘breakdown’, have a cry, take a time out from the caring, and pick yourself up again. We can’t control everything no matter how much we want to.
Who on Earth would allow a woman who had just been what she had been through and let her go without an ounce of support? Is this really where we have got to? It’s foul. I am ashamed of our hard fought fight for humanity being utterly squandered. You are a gem.
Any number of the puppet psychopaths who are (apparently) in charge.
Unfortunately the ‘puppet psychopaths’ are not exclusively in charge. These people are at every level. Sometimes it’s the people even at the bottom of the heap (pay scale) who manage to wreak the most trouble. Seen it time after time too. However it’s the whole culture that breeds that kind of stupidity and frankly often observed viciousness. No doubt some box could be found that was not ticked - unless someone got there first.
Yes and that’s ultimately where the buck should stop. We need able CEOs etc to work with this. The UK system does not seem to breed excellent managers and this is a critical problem. Private companies appear from the outside at least, to do better. Our institutions, NHS, civil service, local authorities are riddled with managers who would not make it ‘in the real world’ (and earn massive salaries) but there are good people working there with their hands tied. The tick box system was supposed to help (I think) but actually it seems to have decreased the skill of just about any job. So that means when it all goes to pot there is no-one to step in who knows what should be done to correct it. Maybe it’s just my age but I despair. You have a tough job but I am sure everyone on the forum is willing you to succeed. We are here to supply a bit of back up, a listening ear.
I could not agree more: overpaid failed leadership is the curse of this age.
My son says it feels like we are sliding to a new Dark Age same as after the fall of Rome and it is hard not to agree with him
I’m so dreadfully sorry to read of all this. You’ve had many worthy replies and the only thing that I can add is that you should try to ensure that when she has thyroid blood tests, that she has the complete thyroid panel - not just TSH.
I have just got in from visiting her and i was able to have a nice long natter with the nurse in charge. I had already emailed her a lot of information and she was on board with testing for any endocrine dysfunction (she could be menopausal) -‘and other areas of concern.
I was very happy with everything I saw and I even got a hug and a kiss off my daughter 😊She is very, very unwell and I am so relieved she is there - she was very much at risk.
I just wanted to add that I believe psychotropic medications somehow how play a role in thyroid disease. It’s possible if your family member is being treated or has been treated with psychotropics it may mask the original disease, in this case the thyroid disease. Or, indeed, the psychotropics caused it, made it appear from it’s dormant state.
There’s so much left to learn yet I t hyroid disease. Since my own diagnosis one of the things I’m still coming to terms with that the global picture on thyroid research has appear to come to a standstill and indeed gone backwards in some way.
I don’t believe the tests can be relied on 100% of the time, probably not even 50%. I have no evidence to back this belief, and nor can anyone prove disprove it either. So, in a round about sort of way, what am saying is if the tests suggest no thyroid disease, keep digging. Any, certainly, treatment could be ‘trialed’ and if it works, then there’s your answer. After all, till this day we don’t know how psychotropics work, we can’t track their progress/harm in a person in biochemical or other tests still (or we largely don’t anyway) and yet we seem to be OK for these dangerous drugs to be served like sweets! It’s a stupid world.
Finally, I would suggest your family member is referred for advocacy as per their legal right. More than anything, it can act as a kind of promt for medical professionals in acting appropriately. Advocacy would work with you too.
Google your local Mental Health Act advocacy services.
i do agree with you and I actually believe that past prescribing has caused her a lot of damage -. I also agree that over prescribing is a dangerous problem. So many people think they should swallow a pill just because it is prescribed by a doctor - a very dangerous assumption in my view!
Of course, some pills are very much needed, even for a short time and there appears to be a long historical medical debate on overprescribing of Levothyroxine too.
However, I do believe this can’t be compared to most psychotropic drugs and individuals experiences.
Funny world where one pill leads to another.
I hope things work out for your family member. It’s been a total sh%t show for years (mental health care) and recovery is slow because of this, but recovery will happen.
With you in spirit and solidarity on the other side of the ether.
I did not realise there was a name for it but hypothyroidism is well known for it. It’s highlighted in a bit of research recently by Dr. Salman Razvi and others by DippyDame . This is in connection with our alleged Co-morbidities (read likely under medicated hypo) and gives doctors free rein to treat us for just about anything but hypothyroidism.
Personal testimony which I need to update really. I’d like to focus on the fact that once they’ve messed you up with Levothyroxine, the damage is done even after blood levels are corrected - hence people refer to it as ‘poison’ or ‘toxic’.
Gosh. As I’m still hoping I am one of the many people that can be well on Levothyroxine mono-therapy, so I can only hope more damage is not being done. Scary thought especially as it seems to very common.
I’m not a scaremongerer I hope! Many people do well on Levo monotherapy. That said, I’m inclined to think that people who have their thyroid removed and/or have RAI are less likely to.
No no! Not at all. I just think that of course it can be scary (for me anyway) to think the treatment we are on is not going to work as it hasn’t worked for many. It would be less scary if it wasn’t for the shenanigans of T3 and NDT prescribing.
I’m having a very rough week with it all so hoping to get through it and for the next dose increase to improve things.
Fully agree with you Everywhere. After RAI my endo neglected to test my hormone levels until my ft4 was 4 (10 - 22). That was the start of many years of undermedication and times spent housebound. The damage done to my body means it will never function as it did or as it should.
I have now had the chance to read your bio, incl the article you wrote re: your experience published by Dr. David Healey. You are very articulate and clear. This is such a well known issue and has a history of being highlighted in some circles, especially complementary health; even although I had never heard the term ‘cascade prescribing’. After my time I think. I noticed/became familiar with this observation myself (and others too of course) about 45 years ago. Just about the time my hypothyroidism truly began to kick in. I still had faith in medicine at that point but it was truly tested, especially as time has gone on. It’s a real problem especially, I think, under your circumstances as you are hard pressed and know ‘big guns’ are necessary. It used to be termed iatrogenic illness (probably still is) but really it’s kept under wraps, particularly by those making the vast profits but doctors too play ignorant. I would say Dr. Healey’s own story is groundbreaking. You don’t often hear of doctors coming through all that and winning! So glad to know about where you are coming from.
That reference to ‘insurance purposes’ made me smile. However I agree entirely. As I have said before (amongst lots of voices) hypothyroidism is definitely a big area for improvement. As HealthStarDust mentions somewhere hypothyroidism seems to have lost its mojo as far as accepting or encouraging up to date research. T3 e.g. would be so cheap in comparison to the list of drugs handed out like sweeties, even without taking into consideration the knock on to the Welfare system. I was just reading the Guardian there too about destitution. So many utterly false economies in the UK today. Too many vested interests.
I so agree. I could be wrong but I feel that the Menopause has taken over from Hypothyroidism as ‘The Biggie’ - thanks in part to Davina McCall. I’m sure that menopause symptoms are horrendous (I missed the menopause. I was 47 when I had a total hysterectomy and oophorectomy. I went into surgery as premenopausal and four hours later emerged as post menopausal). That said, they’re more easily addressed by hormones which are available on the NHS. I’ve never heard of anyone having to buy their own oestrogen.
By the time it had been decided that they’d seriously messed up my body with Levothyroxine, I’d been through two unnecessary courses of antidepressants and various other pharmaceuticals and seen three endocrinologists. A trial of T3 could have cracked it and cost far less.
A great example of false economy: using the cheapest drugs as ‘first line’ therapies. Patient develops side effects and is often prescribed other drugs until a physician has a ‘lightbulb’ moment and wonders if it’s the first prescribed drug that’s causing the problem. My oh my! Add up all the consultation time, the cost of the drugs which patient has been prescribed and it’s a ‘no brainier’. ‘Cheap’ doesn’t pay.
Yes and Davina apparently also has a thyroid problem. I often wonder chicken or egg? Somehow my menopause seemed to be hardly noticeable, so I can’t speak for menopausal symptoms. This kind of brings us nicely round to HandS problem. I can just envisage someone at the bottom of the heap with no authority, letting her poor daughter out of the hospital because someone further up the line got it wrong. I did hear it said once upon a time that people with the least authority are the most stressed. They have no comeback and most often abused in the workplace. Do you remember the outcry about MRSA? Well at the time they were paying off cleaners and employing ‘contractors’. Cheap does not pay. I wonder how many cleaners add up to one CEO salary? Still it probably looks better on the stats and the wages bill - but not for long.
I this case I have grave concerns about the Police ‘triage team’ who appear to be led by a 21yo with minimal training who ‘doesn’t know what she doesn’t know’ and is unsupported in making serious Mental Health decisions in isolation.
Don’t worry - I am over them all like a dose of thrush
… no it doesn’t, a 45 yo lone female with long history of severe and enduring mental illness being allowed to ‘make her own way home’ from and A&E dept, 12 miles away with no money, no phone and no shoes. The police refusing to look for her when I reported her missing. Some 7 hours later they receive a 999 call from a member of the public about a ‘very distressed woman walking in the middle of the road with no shoes on’.
And it got worse after that.
At least now she is in a place of safety and is being treated kindly - long way yet to arriving at diagnosis. She is highly distressed, manic and delusional.
Good on you. It’s good when we find it so difficult to advocate for ourselves, we can still be tigresses for our children - even when they are approaching menopause themselves. Never cross a Mother where her children are concerned. You might catch thrush!
My mum was a nurse in the 50s/60s/70s. She commented frequently on the influx of ‘officers’ - Senior Nursing Officers, Principle Nursing Officers, Asst Senior Nursing Officers and Chief Nursing Officers etc. No one was ever sure what they did - or even what they were supposed to do. They floated around with clipboards, attended meetings and issued edicts.
Meanwhile, the number of doctors reduced; nurses got degrees so that they could take on some of the work of doctors; health care assistants were brought in to do basic nursing duties ; cleaners were renamed domestics and delivered food and drink to patients …… I’m not quite sure who did the cleaning - but they did give the matrons a little job somewhere 🙈
I keep seeing ‘staff’ who look like they might be there for “Bring your son/daughter to work day”. Political editors who should still be in school etc. There are a couple of guys who look they have not started shaving yet. So many workforces not having a proper age mix because younger people generally are cheaper to employ etc etc. Some can’t conceal their boredom etc etc. It used to be a joke that policemen were getting younger looking all the time! No it’s come to pass.
Be sure to insist on vitamin B12 being tested. Anything under 500 can and is considered deficient by specialists in this field, although the NHS will accept results as "fine" if they are at the bottom of the huge range and way under the 500.
B12 deficiency can manifest as depression amongst other things. And it's so easy to treat. But they don't look for it.
I don't want to overwhelm you with information, so if b12 levels do come back low come back to the PAS (Pernicious Anemia Society) section of HealthUnlocked.
Love sent to you all. How awful for you to witness & obviously feel so helpless. May your strength and fight lead to answers needed. All the best to you.
I had a relative who was sectioned twice - she had SERIOUS B12 and undiagnosed Hashimotos/Ords - with the correct treatment, she eventually got well. (It was very traumatic all round both for the Sectioned and the Sectioner).
Before I was treated for hypothyroidism I suffered from severe depression and also anxiety. The things I have found have helped me, apart from thyroid hormones including T3, are optimising nutrient levels.
The biggest improvement came from optimising my iron and ferritin. I absorb it very poorly so it took several years. If I had my time again I would get iron infusions done rather than take pills because of the absorption issue. It would get me through the whole process of optimising my iron without taking years over it.
Another issue I had is that although my B12 and folate were at reasonable levels I had many of the symptoms of deficiency in both. I started taking methylcobalamin (a B12 supplement) and methylfolate to raise my levels. (I avoid folic acid like the plague.)
I try to keep my B12 (both serum and active) at top of range, and I don't worry if they go over range.
For folate I keep my level in range but in the top half of the range. If the range does not have an upper level I aim for a result of 15 - 20 mcg/L.
One possible problem that I have that I have never had tested is that I might have an MTHFR gene problem which means that I naturally have too few methyl donors, and as a result I can't make use of folic acid. Without enough folate I can't make use of B12 as well as possible either.
Note that the best treatment for the MTHFR gene issues, at least to start with, is taking supplements which include methyl donors. Methylfolate is one and is the usual one recommended on the web.
Some people must start methylfolate very slowly and build up to a full dose :
If B12 and folate are optimised with methylated supplements i.e. methylfolate and methylcoabalamin, and there are still problems with symptoms then there are other supplements available over the counter which are methyl donors without being B12 or folate.
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Info on different types of B12 supplements and optimal B12 levels :
Thank you - it is very intense -sometimes it’s just ire that keeps me going. Beneath the fierce fighting front with people who have failed her, i am grieving bitterly for my daughter. I want her back
I'm so sorry to read what you and your daughter are going through. I'm a believer that hormones play a crucial role in our mental health which are often dismissed by health professionals, sex and thyroid hormones. As both you and your husband both have thyroid issues and your daughter is likely slap bang in perimenopause these really need looking at but you are really going to have to push for her.
My son is a mental health nurse but works with adolescents. We often have these conversations but sadly he has never been taught that hormones can play a major part which I find wrong but I guess that's not a nurse's job to know why.
Like others said a full thyroid panel is needed and needs to start on hrt which I know isn't an overnight fix but a start if symptoms warrant.
I imagine your daughter will likely be given all sorts of medications to try stabilise.
If not already on your mind then bring up a conversation about T3 therapy with the psychiatry team. It's worth a try at least speaking about it. We read how severe depression is sometimes treated with T3. Read up as much as you can on this matter, it could be of help.
I've just found and re listened to a very good pod cast. If only briefly cover severe mental health problems but it's all about T3 therapy for depression amongst other things. Worth a listen.
I hope your daughter gets the help she needs and not just pill after pill
Dear HandS, so sorry that you and your daughter are going through this. My son went through a terrible period where he had bad panic attacks, violent temper outbursts, depression, sudden hunger and cravings, sleep problems and nightmares, and a host of other things including suddenly putting on weight. He didn't want to go out anymore, and when he did, would have to suddenly rush back home because of a panic attack. Our doctor here wanted to give him antidepressants, which I refused to let him take, but we needed to resolve the issue. Fortunately, I remembered that during my research on the adrenals and thyroid for myself, I had come across someone with symptoms like these caused by an adrenal problem, and since I had already been diagnosed, I knew he was at risk too, so decided to take him to see Dr.P in the UK. Turned out that his main problem was the adrenals - his thyroid values were within the range, but he'd started showing symptoms of that too (the weight gain for one), so Dr. P also put him on HC at first to calm the adrenals, then moved him to one of the adrenal glandulars everyone was taking at the time, and started him on NDT as well, though he said he may not need the NDT for a long period. Years later, he is now off the meds, happy and healthy, and married with 2 kids.
Perhaps you could ask for adrenal testing? - it may not be just her thyroid and/or the menopause. I was told for years that my symptoms were just "menopausal", when they turned out to be adrenal and thyroid related, and by then I looked (and was) a mess!
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