Hello everyone,I have had mental health issues for a long time following the birth of my first child over 30 years ago, and going through a premature menopause, which was ignored by all medics.
Since being diagnosed with Hashimoto's Hypothyroidism in February 2021, my mental health plummeted to new depths.
I signed up for local mental health help. I had to wait around 17 months to get talking therapy, which I am now in the middle of.
Has anyone experienced this?
I keep telling them that my thyroid hormones are not yet optimal, but the limited course given (6 weeks, 1 a week), they probably have to 'do their job'. I am encouraged to do more. Or at least try to do more, which I have been doing myself, because I have seen an improvement purely from my dose increases.
What frustrates me, is, apart from the fact that the same situation occurred 30 years ago, is that the mental health help you are provided with is extremely rigid, and they ignore the fact that a lot of my symptoms are due to hormone imbalance, and, until I balance my hormones, I will not be physically/mentally able to successfully complete their time-set tasks to improve my mental health.
Can anyone help me to justify my reasoning?
Thanking you all.
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DandyButch
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I have found even with the optimisation of my thyroid medication and vitamins it has taken me a good year or more to really start feeling well. I have not yet reached fit, but I’m working towards it and can walk a few miles now and have a busy day without needing to take to my bed the following day.
My mood is good, but when I do occasionally get tired - weepy is round the corner.
I do not feel quite as emotionally resilient as I used to be. I have an underlying fear of being in ‘that place again’. I succumbed to stress and anxiety whilst undiagnosed and under medicated. I would say 90% of what I was experiencing was down to the hypothyroidism. I was utterly amazed how much better I felt once adequately medicated. I think getting out and about and feeling capable of doing stuff made such a difference. I lost my confidence in all sorts of ways and have been gradually reclaiming it as my health has improved .
If these courses are supposed to be a mental health benefit, you should not be feeling stressed by attending. 😱.
I wonder if a symptom list and a brief printout explaining hypothyroidism might help them understand you are dealing with something that is significantly affected by a disease you are in the process of getting treated.
I have covered it in my bio and have actually had a similar discussion with another person on the forum today.
My bio sits in my profile (click on my face) and my replies to posts can also be found there.
It is wonderful that you are starting to see improvements with doses increases - this is wonderful, but you are still on your journey to recovery and that is taxing enough without jumping through hoops and hitting KPIs for well meaning mental health nurses/councillors. They probably need more information to better understand. Sending positive vibes (got a few spare) 🤗
Thank you for your time to reply. I know uncertainty and doubt has crept in a bit so reassurance is welcome.
I just feel that mental health help would be better if they included cause and more flexible timing of appointments to accommodate the length of time it takes to be physically well enough and optimally medicated enough (which the NHS doesn't seem bothered about). I have been extremely unwell for so so long. I am feeling to blame for not fulfilling the tasks given to me, and yet I am not well enough to do these things just yet. I know it's all part of it, but, I don't want to run before I can walk, only to have setbacks and perpetuate the feeling. I need successes not failures. Been there done that enough times already, and it doesn't help, in any shape or form.
It has affected my energy levels a lot.
Sorry to go on, but I have tried to explain this to all the mental health people I have spoken to, but it seems to be dismissed as irrelevant.
I would say if they are not taking the connection of your mental health with your currently fragile physical health they are not doing their jobs. Or is the job merely an exercise in box ticking?
Having an under active thyroid is a whole body thing - this includes the brain. Unfortunately NHS are not holistic in their approach and struggle to understand cause and effect in hypothyroidism and many other conditions . Symptoms are treated separately and sadly, that is why diagnosis takes years (decades) for many of us, some poor souls never being diagnosed or treatment refused because of the blood test based thresholds that discourage many doctors to make a diagnosis.
If you read my bio and posts I generated in my route to health you will relate totally to my experience because we all get the same symptom based treatment.
I have read your bio and relate to it completely. I think yes, mental health treatment is very monotone. Like CBT, one size fits all. But, it doesn't. And basic mental health treatment is too regimental. E.g. you have a six week or 10 week course, say, and 'you're better now'.
And I get very angry when reporters on the TV and in newspapers, and politicians keep saying especially lately, that getting a job will help your mental health!!!
They obviously have never had anxiety and/or depression to know how debilitating it can be. Yes, I agree it can help some people, but they label everyone with anxiety and depression as needing a job to feel better. Utter tosh.
Why oh why is low mood, anxiety, and mental health so clearly under valued and discarded by all, almost as if it is self inflicted therefore can be easily fixed by getting a job!!!!!
Also, it depends totally on what job (physical or mental), who you're working with, where, and who you're working for.
These can all have a profound affect on failure or success.
Hello my situation is vert similar. I had post natal depression 33 years ago got admitted to hospital for month .I've never been the same person since .I've been diagnosed with under active thyroid 5 years ago.ive had councilling. My stress isn't good if I can't control a situation .hopefully you will find the right treatments for you .always up for chat x
Thank you Tigglypoo,A very similar history to me. It is nice to know others have had experience too.
When I had my early permenopause, I had to wait 7 years to get the proof (via blood tests through a gynaecologist) to show my GP I had been correct all along. In the meantime a lot happened, but I was considered mentally unstable.
Regardless of being given various different antidepressants, the only thing that made me feel better was HRT. Funny that??? Sounds familiar. Although, because of the delay in diagnosis, it took a longer time to correct all symptoms.
Your welcome I never got put on hrt said it wasn't hormones. Now I will never know. I got divorced 20 yesrs ago can't committ to a relationship for any length of time theses days .take care x
When you were diagnosed with Hashimoto’s did they check your T3 aswell as T4 and TSH. I have read that low T3 can cause mental health issues. The way to check this is if your T4 is high in the range but your T3 is low in that range. You can also do a gene test for the faulty DIO2 gene through Regenerous laboratories privately for about £165. If you have this faulty gene you’ll be converting poorly. T3 liothyronine medication can only be prescribed by an Endocrinologist or importantly in your case a psychiatrist within the NHS. You may be ok with your T3 level but it is worth checking. Maybe you could do with some T3 liothyronine?!
Due to losing my job because of ill health, I was not able to afford private tests etc. I just felt, after reading lots on this forum that T3 may work for me. Levothyroxine was dire.
I am now on Liothyronine only and am very slowly making progress with very gradual increasing doses. My endo appointments are every 5 months, so long waits in between. Although, I think I may have to battle to get the optimal dose, because she is using only TSH ranges and weight to decide on dose size, which is wrong, according to info and advice shared on this forum.
I think you’re right to think dosing on weight is wrong. If my dose was based on my weight I’d be way over medicated. The only way to check is a full thyroid level blood test = TSH, T4 and T3. For myself if either of those goes below or above the recommended levels I feel terrible. I know from past symptoms and blood tests I don’t do well at all. I must have no TSH suppression and T4 plus T3 levels within range. I’ve been told on here I’m luckily to be on T3 and keep my TSH in range. I get my bloods taken with and without medications to know what’s the lowest and highest they get to. I split my levothyroxine and my liothyronine doses throughout the day also in doing this you can avoid spikes.
I think you are right once on combo or T3 only the dosing by weight is out the window.
A good guide for levo only though - but then again, I stress, a guide not an edict. My doctor started and left me in 25ug of levo ……and left me on it. 😱. That equates to a dose for a person weighing about 2 1/2 stone - I’m 15 😂. Thank god I had the dosing guidelines to wave at them, or I might not have ever been allowed to reach a therapeutic dose. I’m shuddering just thinking back 😅😬
My GP initially diagnosed me with ‘ health anxiety’, suggested I saw a psychotherapist & offered me anti depressants. Joining this forum helped me realise that my symptoms were related to being under medicated and I followed forum advice to improve this.
I try to limit sugar and avoid caffeine in an afternoon, as this can make my anxiety worse. I eat an anti inflammatory diet, avoid gluten & I supplement with turmeric, omega 3 & magnesium.
increased anxiety has been the hardest thyroid symptom to manage for me. I have seen a steady improvement since slowly adding T3 to my Levothyroxine dose, taking magnesium daily (I find dosing early evening helps me relax), being gluten free & practising mindfulness, Pilates and journalling (ie writing positive thoughts).
I’m so much better than I was, although did have a dip with peri menopause, when I needed to add HRT.
I need my thyroid medication & key vitamins to be optimal and if I need to make adjustments (either increase or decrease) I do this super slowly as my anxiety levels can flare.
For me the following really helped from the CBT sessions: active mindfulness (when you do certain movements to a recorded mindfulness track- eg Danny Penman/ Mark Williams), journalling books (where you have to fill in positive affirmations every day), aromatherapy and challenging negative thoughts (the psychotherapist had to help me a lot with this one…. For me, what worked best was trying to talk to myself like I would advise others) At worse, I have a tendency to catastrophise & sessions helped me stop my mind racing to ‘worse case scenarios’
The great thing about seeking professional advice is (when you find the right practitioner) they will tailor sessions to what works best for you.
You are not alone, keep posting and seeking advice. We are here to help & support 🦋
Oooo that’s interesting- I have had a tendency to catastrophise when sub optimal.
I saw an interview with Mel Robbins on diary of a CEO the other day. She shared a few hacks and I kid you not I have been feeling chipper ever since. I found the whole process of moving so stressful and thought I would all fall away once we turned the key to our new home. It didn’t- it felt like the same old ‘you know what’ just in a different place. That interview really broke the negative spell for me.
What time set tasks are they expecting you to do that aren't possible? Surely any task has to be agreed and you happy (and able) to do it?
If the course of CBT is just 6 weeks and you feel you need something for longer then you could ask for a referral to social prescribing.
The NHS don't seem to take hormonal factors into mental health which is a great shame as that would often pay dividends. Its just not how it all works which is wrong of course.
Cut a long story short, for various reasons, I have a daughter, a son, and a husband who need me, either for practical help, which has become almost impossible for now, and advice and emotional support, which is a bit challenging due to brain fog and forgetfulness.
However, I am and have always been happy to help them when they need it, where I can.
The talking therapy lady tells me that I should not help them, but help myself, as I need it more.
Whilst I understand what and why she says it, it would not help me really, because by not helping them, why would they help me? Also, not helping with their plights will not, in itself,
Improve my mental health, which is the purpose. To me that seems a very selfish act.
I have always been the glue in my family, and we work as a team. Together. To tell them to keep their issues to themselves, so that I don't have to deal with them is pushing them away. How helpful is that.
Also she recommends I get dressed daily, open the curtains daily, eat at set times, sleep at set times, go for short walks daily etc...
If only.
It is extremely hard work to even do a bit of washing up, which I often have to do in shifts.
I'd probably have to lie down after getting dressed/undressed. It's too much.
Part of the problem is that they can't imagine the level of fatigue. Hopefully once you get a bit longer on supplementing (I think I read you had started B12) and life will look a little different.
For now you could pick one thing that might be possible and give that a good go.
Its really positive that you have seen improvements with dose increases so do hang on to that.
It sounds like CBT might not be the right thing at the moment possibly. Ask them about social prescribing.
I'm not doing CBT. I did that many years ago, and didn't want to do it again, because I remember most of it, and most of it was pretty useless at the time.
I'm doing talking therapy.
What is social prescribing? I have not heard of that before.
Ah my mistake. I'm not sure of the difference between talk therapy & CBT.
Social prescribing is where you see a social prescriber and they 'prescribe' different things to do really. It could be an art group, social meet up, all sorts of things depending on what you need, can do.
Sadly, at the moment, I can't even get out of the house. Better than I was though. Couldn't even walk to the bathroom before liothyronine. Thanks for your suggestion though 👍
Just wanted to give you a virtual hug, if that is ok. You are doing brilliantly, and well done for being there for your family and working as a team. I found talking therapies didn't understand that at all, and also made me try to put myself first to the exclusion of others, which wasn't feasible and just made me more stressed. They also wanted tasks done, tickbox mentality strongly to the fore, and wouldn't consider the health problems that I had which were actually causing the anxiety and depression at all - just said I had health anxiety and needed to stop thinking about my illness! I'm afraid I quit (which I don't suggest is a good idea for anyone else - and was partly because I was having chemical reactions to the cleaners and airfresheners that they insisted on using and I was actually getting more unwell for physically being there). Magnesium made a big difference for me and so did vit B12 and folate (B9). Deficiencies in the Bs are regularly missed as they don't test often enough and don't realise that the tests are frequently very misleading. If you can get B12 and B9 tested, preferably before taking any B supplements as they make it harder to identify, then that would be great. Don't assume that being in 'normal range' means that you are not deficient as you can have a functional or cellular deficiency at any serum level, low, middle or high. When I got those all sorted, plus diet changes (GF etc), my horrendous middle of the night anxiety just went away and my mood lifted.......The more I took things back into my control, and the more I found out about so that I could actually ask medics and understand/challenge, the better I felt. The people you are seeing do not understand how interlinked the two are, because that is not how they are trained. With Hashis you will have low vitamin and nutrient levels as well as low homones, so you cannot possibly be well mentally until you are well physically - their treatment insists on keeping the two seperate, which makes no sense at all. Hashis affects parietal cells so you will struggle to break down food (due to low stomach acid) and absorb B12 (due to low acid and lack of intrinsic factor). You may well have already been B12 deficient as lack of B12/folate affects DNA methylation making autoimmunity more likely, and genetic SNPs affecting methylation (including the way we break down oestrogen, neurotransmitters etc) are rather common, affecting some of us more than others. Any history of B12D or Pernicious Anaemia in the family? B12 problems and thyroid disorders go hand in hand. Best wishes to you
Hi bookish, Thank you for the hug and support. It is much needed.
You are far more knowledgeable the I am on this subject, even though I have read a lot on here and on the net. It doesn't help having brain fog, and forgetting things as soon as you've read them!!!
My mother had anaemia once and had to have a blood transfusion, but that was due to heavy menstruation during her menopause when she was in her forties. I don't think anyone in my family had any thyroid problems, but none of my grandparents discussed health matters.
Different generation.
I am hoping to get an answer from my endo soon. I emailed her on 18th October, and was told response would be within 14 days......
I phoned after two weeks and again today. The endocrinology dept are forwarding it again to her. I shall have to wait and see.
I know my vitamins and minerals were either just within range or low. Although the GP, because of NICE rules, don't test for much. I have been supplementing the ones I know about.
Brain fog is a pain, I still get it sometimes but am a lot better than I was. You'll get there, don't worry! I hope the endo is some help. If there is any chance of finding out how low the B12 and folate were (assuming they did test them) you'd have an idea of how much and what kind of supplementation might help. Some need B12 injections as oral doesn't work, but for many it will work if you can take enough of it. Are you taking a B complex or B12 or folate (folic)? May need a larger dose or a different form (vitamer) - 4 kinds of B12 and at least 3 of folate, and 2 of B6 (also important) and although the type makes no difference to some people it can make an enormous difference to some of us (me included!). Cheers
Hi, ok that vit D was too low, so I'd be trying to get it up to the 100 nmol or thereabouts. If you weren't taking a supplement at all before testing and have been taking 2000iu to 4000iu daily it might now be ok, but absorption varies hugely between individials. If you haven't taken a supplement or only a small one it would still be ideal to retest first, or you could try 2000iu daily for the winter and test in the spring. This one is an at home test with an NHS lab, if you can find the £ at some point, but I'm sure there are others available vitamindtest.org.uk/
Assuming that you weren't supplementing when taking that test - the B12 isn't low enough for you to be likely to get any help and would be perfectly ok for many, but given that you have some possible symptoms, I'd be trying to get that up to about 800. In our family, serum in 300s and low 400s we are symptomatic, 800ish and we function.
If you are able to, test, for example with Medichecks who do an advanced thyroid with vits - it includes Vit D but is an active B12 (also called holotc) rather than a serum B12 - serum includes both active and inactive (which can be important, especially after exposure to nitrous oxide/gas and air as it inactivates a proportion of your active B12. Not so much a problem if you are not already deficient and have a B12 rich diet as you should replace it reasonably fast, but I suspect more people than we think are already B12 deficient. Can't help but think it will contribute to post-natal depression and it certainly can be an issue for midwives.) Active B12 test can find people that are missed by a serum B12 test but it still misses people (B12 testing is really tricky). Serum can look ok but active be really low.
Sadly because I lost my job, I do not have the funds to pay for private testing. I wish.I have to take vitamin D for osteoporosis which I was diagnosed with in my early 40's. The GP does a repeat for 1000 IU daily. However, due to a mistake at the surgery, I have a surplus so for the last few weeks have been taking 2 a day. B12 I am taking sublingual, and vitamin B complex as recommended on here.
Plus Brazil nuts. And occasional Vit C with Zinc as a drink.
OK, sorry to hear that. I was in that position too and now self-employed but very low earning so £ is hard to find. If you have been on 1000iu for a long time and your D was still only 52 nmol then it isn't enough for you, so I'm glad you are taking double. As it is prescribed I don't think it unreasonable to ask them to test it again for you, so when you've finished the double dose, might be worth asking just to see if has actually pulled that figure up a bit. My mother in law had the same problem with GP - D prescribed in her osteo treatment for years but never checked and when we did ask them to check in case it was too high she was actually still at pitiful levels, so we bought her some higher strength ones to get it up to a decent figure. We also got her some magnesium as you need that to regulate and metabolise vit D and it is very important for bone health, so it is essential to have enough. If you can manage to take more than one sublingual B12 daily it might be worth a try. Best not take more than the recommended amount of B complex as B6 can be problematic for some, especially in the common form pyridoxine (you may be on the better one, P5P), and you don't want too much folic acid, which is likely to be the form it contains. Cheers
Are you taking the Methylated version of multi B vitamins? You need the methylfolate version of folate/folic acid. Folic acid is the synthetic version and many are unable to convert to the methylated version the body needs.
Dr Izabella Wentz is an American doctor who suffers Hashimotos. It's complicated, but she explains the reasons we need to take the methylated version
The only time I've had any hint that there could be a physiological element to a MH issue (post-natal depression) was a suggestion that I wasn't eating enough, which was true. Physical health problems never seem to be considered.
Totally agree with you, DandyButch .
Like, would a dr/therapist prescribe jogging for someone who has a broken leg? Of course not. One would hope they'd wait at least six weeks for the bone to heal and then suggest easing into it.
Likewise, until your hormones/thyroid are sorted out, how can you be expected to cope with their deadlines, etc? Thyroid not only affects the body with fatigue, pain & so on but also, the brain function with foggy, slow reactions, and motivation as well as executive function.
Sheesh, it's not rocket science. Just commonsense like you're thinking, DandyButch .
Personally, I don't find talking therapy of any use.
-Unless it is with someone who has been there before, remembers what it's like, and then also understands your particular situation from all levels: social, cultural, familial, environmental and you as a particular individual, and applies that understanding to your situation.
DandyButch , don't let the whoevers-that-don't-understand push you beyond your limitations and add negativity on top of your load. It could be the final straw for you and cause you to give up on this therapy that may help you at the right time -when you're physically well enough.
Lastly, give yourself credit for how far you have come, managing to find relevant help through people on this website, and the fact you are surviving!
Hello Dioryth,Thank you for your words of support, it means a great deal when my confidence levels are on the floor, and doubt everywhere.
I'm glad it is not 'just me' that feels this is a bit premature. I understand the learning to live with a long term health condition, but this is on another level.
Oh DandyButch I really feel for you, it is awful when people's expectations of you are impossible to achieve and therefore hindering rather than helpful. You seem to be being blamed for not doing what they believe would make you better, I hope you know their beliefs are mistaken and unrealistic. It's damaging too not to be heard, especially by someone who's job it is to hear and understand you. How about this suggestion? Might you be able to persuade your GP to give you an appointment with a psychiatrist since psychiatrists being fully qualified doctors (which your talking therapist almost certainly isn't) often understand well thyroid problems - in the hospital I used to work in it was routine to run Thyroid Function Tests straight away when patients were referred with symptoms like fatigue or depression. Would you be comfortable with being referred to a mental health team? If the team is good they will review your medication and will listen to your problems and understand.
This talking therapy (I suppose the clue is in the word therapy), is through my local mental health support team. Actually, I have just finished this week's appointment, and she was much better, with less 'targets'.
Initially I was offered CBT. However, I did this years ago, and it didn't help then, although I do remember it's aims. So I declined. Talking therapy was the next offer for help.
When I came out of hospital, I was seen by the emergency mental health team. I found that they were more interested in box ticking than helping. They were only interested in mental health. Again, not linking mental health with physical medical health. And they were inept, not able to follow through with any anxiety medication issues. I had to phone and phone to get help. Not ideal. No follow-up. Done, move on to next one.
Sorry, I feel that a lot of the mental health 'help' is one-size fits all. Which it doesn't. And very basic 'help' too. No wonder mental health issues are exacerbated and long lasting
due to the long delays and very limited, often difficult to obtain help.
I also had, years ago, contacted The Samaritans, on several different occasions, but did not receive any significant help, other than to contact my GP, which I had already done. Going round in circles. Frustration!
If only there could be some help that actually helped. Also, when you have anxiety and depression you are given antidepressants and, hey! you're fine now.!!!!
I am not impressed with the mental or medical help provided by the NHS. Too long waiting lists, and inadequate treatment, as dictated by NICE, but the powers that be expect 100% recovery. Der!
Please don't apologise, I agree with you, sadly the mental health 'help' really doesn't work for many and it's not moaning to explain what you have been through. I can't understand why the mental health team is not exploring your thyroid function and feel sorry for you yet it sounds as if you are managing despite the inadequate help. Best of luck
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