Has anyone experienced severe mental health pro... - Thyroid UK

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Has anyone experienced severe mental health problems due to thyroid?

Ploggy123 profile image
36 Replies

My daughters symptoms have gotten so bad that she now needs mental health treatment in hospital. I am still convinced her problems are hormonal. She has been treated with 60mgs of prednisilone for an autoimmune condition (DS DNA antibodies positive and inflammation behind her eyes and brain). The hospital thinks her psychosis has been induced by the steroids and are weaning her off it (they see this quite often). We have seen many consultants to get to the bottom of her variety of unusual, supposedly unrelated symptoms. They ALL say her thyroid is normal because its in range ( end of story). Of course she has many thyroid symptoms including low BRM, both parents hypothyroid and only other sibling has endiometriosis and asthma. She also has a nodule on her thyroid to be investigated when we get to the endocrinologist at the end of this month. What is to be done? Is it a question of riding out this situation/crisis in hospital until she is stable or is there any dialogue to be had to convince the professionals that TSH is not the gold standard of diagnosing thyroid problems (you see their eyes glaze over when you try to explain the opposite theory to conventional medicine). Any suggestions please? :-(

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Ploggy123
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36 Replies
Moggie profile image
Moggie

T3 is used to treat certain types of mental health problems so maybe you could kill to birds with one stone and ask for her to go on a trial of T3 while she is in hospital. If I can find the medical paper I read a long time ago stating the positive effects T3 has on mental health problems I will post it to you so you can take it to the hosp.

Will have a look now.

Moggie x

Ploggy123 profile image
Ploggy123 in reply toMoggie

Thank you . X

Ploggy123 profile image
Ploggy123 in reply toMoggie

Hi Moggie. Did you manage to find the medical paper. I need all the help I can get if I am to convince the hospital based on my initial chats with them :-(

Moggie profile image
Moggie in reply toPloggy123

Sorry I have only just seen your question asking me if I had found the paper I was thinking of - I hope you don't think I was ignoring you but as you know it's been a bit hit and miss with regards to keeping tabs on things with no email alerts.

Unfortunately I have found the blog with the information on it but it was a year ago and it is blocked due to the new site - which is a great shame as, as your case shows, there are numerous times that people on here go back to information previously posted.

Sorry - I will ask the tech team why this is.

Moggie x

Ploggy123 profile image
Ploggy123 in reply toMoggie

Thanks Moggie :-)

Moggie profile image
Moggie in reply toPloggy123

The tech team have just email me to say that this problem should be resolved by the end of the week so hopefully I will be able to get you the information then.

Moggie x

NBob profile image
NBob in reply toMoggie

Ridha Arem's book "The Thyroid Solution" is an excellen tresource for this issue

Ploggy123 profile image
Ploggy123 in reply toNBob

Thank you. Will check this out. xx

cbrown6478 profile image
cbrown6478 in reply toMoggie

Hi, Firstly I have to wish your daughter well and hope things have got better since these posts.

I have read your story and Thought for a moment You were talking about my partner. Uncanny the simmailarity. Tho in my partners case his elder sister has had the same problems with OVERACTIVE Thyroids, but does not suffer from the mental health issues as he does. My partner has had his thyroids taken out back in 2008 and since then has suffered badly with mental health problems.....emotional ups and downs ...... I think you may know what I mean........ and this is only one of the many problems that according to the doctors are not linked and they have also said that His mother and sister also had the same thyroid problems that it is NOT herereditory. Interesting that when faced with FACT they close their eyes.

And NHS cutbacks dont help either.

We are still searching. So If it is ok please reply...... His Nose is just above the water at the moment. (Metaphoracly speaking)

We Hope you both got the help needed at the time or now.

nicolajane profile image
nicolajane

In my experience Doctors do not connect thyroid disease with mental illness and instead are quick to 1) attribute all symptoms to a mental illness and 2) prescribe psychiatric medication.

Before I was diagnosed with thyroid disease I had several years of severe depression, anxiety and was eventually diagnosed with borderline personality disorder when I failed to respond to antidepressants. Although I cannot prove that all this was caused by hypothyroidism, I'm pretty sure it was a major contributing factor. Personally I did not ever suffer psychotic episodes but it is known to be related to thyroid disease - the victorians reported cases of 'myxoedema madness'. This website has some info:

thyromind.info/psychiatry.html

If I were you I would push for further thyroid tests (on the basis that thyroid disease runs in the family.....) including free T3 and free T4. Failing this, it may be worthwhile seeing a private doctor (Thyroid UK has a list) when your daughter is a bit better......

Nicola x

Ploggy123 profile image
Ploggy123 in reply tonicolajane

Thank you. X

Ploggy123 profile image
Ploggy123 in reply tonicolajane

Thank you x

Have the doctors discounted Pernicious Anaemia - B12 and/or folate deficiency? Links to many articles here:

ncbi.nlm.nih.gov/pubmed/?te...

Ploggy123 profile image
Ploggy123 in reply to

Thank you x

Ploggy123 profile image
Ploggy123 in reply to

Hi Hampster. One Doctor previously had suggested her B12 levels were low and could indicate an absorption problem. She got a shot of VitB12 ( because the nurse misread the note to "test" b12) and behold she got better. Since then however, every single Dr has looked at the test results and said that her levels are normal( she's in the wide range but near the bottom and far from optimal). :-(

in reply toPloggy123

Hi Ploggy123,

Unfortunately doctors have a tendency of using the "you're normal" line when our levels are actually sub-optimal. What is particularly sad about your story is that your daughter actually responded to the treatment that was accidentally given, but still they do nothing because of the power of the lab range. Doctors also tend to think that PA / B12d is a condition of the over 60's, and that young people don't get it, this is of course nonsense.

I would recommend that you go here:

b12d.org/

and here:

pernicious-anaemia-society....

You can read the PAS forum without being a member. I would recommend typing the word "psychosis" into the forum search box and you will see how many people's stories refer to this.

It might help your daughter to have the following tests done: Active B12 / MMA / Homocysteine. Link here:

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

The antibody tests for classic PA are anti-intrinsic factor and anti-parietal cells, but you can test negative for both and still have PA. I'm going to go all in and reference the 2 books on this subject:

"Could It Be B12? An Epidemic of Misdiagnoses" by Sally Pacholok & Jeffrey Stuart

"Pernicious Anaemia: The Forgotton Disease" by Martyn Hooper

H x

in reply to

Also meant to say the obvious - she's now had a B12 shot so that compounds issues because it has pushed her blood levels up but is not enough to make her better. Do you know what her serum B12 level was prior to the shot? You should really find this out.

in reply to

And you might be interested in this chart:

stbtoolkit.com/docs/Prescri...

From this:

Corticosteroid drugs for inflammation: Beclomethasone(Beclovent,Vancenase,Vanceril),Budesonide(Pul- micort, Rhinocort), Dexamethasone (Decadron), Fluticasone (Flonase, Flovent), Hydrocortisone (Cortef), Mometasone (Nasonex), Prednisone (Deltasone, Meticorten), Triamcinolone (Azmacort, Nasacort)

Nutrients Depleted:

Calcium, Magnesium, Potassium, Selenium, Zinc, Beta-Carotene, B6, Folic Acid, B12, C, D, DHEA, Melatonin, Protein and Amino Acids,

Ploggy123 profile image
Ploggy123 in reply to

Thank you Hampster. All this useful information and a helpful chart. Really, thank you. x

Marz profile image
Marz

...there have been many posts regarding mental problems and thyroid.

It must be so frustrating for you. The above advice is excellent and I really cannot add anything more. T3 is required by every cell in the body - all 7 trillion +.....the brain has the biggest demand followed by the gut. T3 is the only active thyroid hormone so it needs to be near the top of the range.

As your daughter has one auto-immune disease it may be worth asking for her Thyroid Anti-bodies to be tested - if you have one AID then it often follows you can have another. Could be she has Hashimotos.

T3 was used for mental conditions back in time I believe....and for those of us that take it we can feel the difference in many ways.

I have some links which I will write down and post later !

Hope you soon have some better news......

Ploggy123 profile image
Ploggy123 in reply toMarz

Thank you x

Hi

From very recent personal experience.

I have been under the mental health team for over a year basically at my request for many many reasons (GP related)

My story is very very complex as it relates to complex post traumatic stress disorder. However I think it may be related in some ways as after being prescribed simultaneous Anti Depressants and subjected to major psychological distress out of my control. I think it was a combination of them both where in desperation I increased my levothyroxine by 50mg for 2 days panicked and increased by only 25mg to a final dose of 175mg.

I told my psychiatrist what I had done and although shocked noted the improvement in my cognitive ability. He referred me for blood tests which came back as under 0.75 which he noted as low but agreed to leave me on that. So from experience of Anti Depressants that were stopped for severe side effect reasons and a small increase in my thyroxine I can state that even a small increase can make a remarkable difference. I can't find my previous post where Hellava gave me a brilliant link to the T3 and psychiatrists proving that psychiatrists do know the link between thyroid and T3 improving mental health. I am sure he will be along soon o supply the link.

Unfortunately my psychiatrist still refused me T3 but your daughter may have a more willing Doc :)

xxx

Ploggy123 profile image
Ploggy123 in reply to

Thank you. My daughter also had problems with severe PTSD x

in reply toPloggy123

Ploggy123 see what the mental health team says and does but there is so much hope so hang in there :)

An increase in levothyroxine and some essential vitamins have started to help me.

There is so much you can do but get your daughter more stable and ask them for copies of her blood tests and ranges. (you have a right to them) post them on here as they are brilliant on this site:) and extremely knowledgeable "thyroidists :)" that will offer you so much advice regarding B12,Folate, adrenals. and so much more.xxx

Ploggy123 profile image
Ploggy123 in reply to

Thanks Jacaranda. I'm not terribly enthused by the mental health team. I spent nearly the whole day in hospital yesterday hanging around trying to get a chance to speak to the Consultant before she went off on holiday (my daughter had been in hospital 5 days and I hadn't got feedback until I planked myself in their way). She wasn't impressed by my information learned from this site over the past few months and prefers the esteemed knowledge of the Endocrinologists. I will find out who is covering for her and see if they have any sympathy towards a thyroid involvement. Thanks for you kind words :-)

PinkNinja profile image
PinkNinja

I was hospitalised due to mental illness years ago, for a whole year at one point. I am positive that it was due to my then undiagnosed hypothyroidism. Since getting my thyroid treatment sorted out, I no longer have ANY symptoms of my so-called incurable mental illness. I would definitely get them to check her thyroid and get the actual blood test results. There is a big difference between "normal" and "optimal". You may have a fight on your hands but it is worth it.

Moggie is right that T3 is sometimes used for treating mental illness, particularly stubborn depression that doesn't respond to anti-depressants. For me, it also got rid of my psychosis which I believe was due to too little T3 getting to the brain.

I hope your daughter gets the treatment she needs so she can make a full recovery from this.

Carolyn x

Ploggy123 profile image
Ploggy123 in reply toPinkNinja

Thanks Carolyn . X

Nanaedake profile image
Nanaedake

Yes, I had severe mental health problems caused by thyroid imbalance. It was caused by the generic Levothyroxine I was taking which was of very poor quality. I had to change to another type but it took me over a year to get better. The GP's kept telling me it was nothing to do with my thyroid and treated each symptom separately. I believed them - almost- at least initially, I believed them but eventually I did my own internet research and found out that there was a problem with my tablets. I was extremely ill with depression, anxiety, panic attacks ending in admission to A&E. I was not able to socialise, I couldn't focus or organise my thoughts including decision making. I lost the will to live. I couldn't communicate effectively with people and I became paranoid and had to take time off work. I felt my life was not worth living. I took anti-depressants that the GP offered as I was so desperate but as my levothyroxine was adjusted to the right dose for me, I improved and came off the anti-depressants. I'm pleased to say that my mental state is now fine and I'm holding down a responsible job. I have a few residual problems, my memory is not as sharp. I have a few problems with joint pain and so on but my general mental health is excellent. I would advise that people stay on one formulation of Levothyroxine. Find one that suits them and stick to it. Don't rely wholly on TSH and T4 results as mine were fine but I was not. It took me over a year to recover from the poor quality Levothyroxine so there are no quick fixes but there is hope. My GP now agrees that all my problems were related to my Thyroid condition. I hope your daughter gets better soon.

helvella profile image
helvellaAdministrator

Try this link:

ncbi.nlm.nih.gov/pubmed/?te...

Or if that gets corrupted:

tinyurl.com/TUK-HU-MYXMAD

The bottom paper, by R Asher, is one that I sent a link to.

Rod

editfmrt profile image
editfmrt in reply tohelvella

Thanks for this Helvella - unfortunately these are no longer hyperlinks on my devices now we have the new site and I can't copy them either - lots of typing long urls for until they get it sorted!

helvella profile image
helvellaAdministrator in reply toeditfmrt

Yep - they are not hypperlinks for any of us! :-(

Rod

editfmrt profile image
editfmrt in reply tohelvella

The help line has come back to me and said they are going to address this one. It will get there and everything will be fine in a few days I'm sure.

Ploggy123 profile image
Ploggy123 in reply tohelvella

Hi Rod. The Asher link I could access and it was informative and helpful. Unfortunately the Psychiatric consultant at the hospital was content to agree with the learned opinion of the blessed Endocrinologists as they are the experts and informed me that all admissions are routinely tested for thyroid!!! Is there anymore up to date respected opinions that I might rely on or is that what is in the first link which I couldn't open on my tablet? Thanks for your support.

helvella profile image
helvellaAdministrator in reply toPloggy123

Try this short link (I assume you mean the B12 link?):

tinyurl.com/TUK-HU-B12PSYCH

Rod

nonconventional profile image
nonconventional

I found this on another site:

Personal experience: After suffering hormonal problems (severe PMS) since using the contraceptive pill for 8 years from age 16, I went to the doctor aged 38 with severe hair loss (did not emphasize the accompanying depression, insomnia, difficulty maintaining weight, pain in joints, dizziness, cognitive impairment including memory problems & inability to concentrate eg couldn't read a book, hives, dry skin etc. because I was too low emotionally. TSH was 9. Retest showed TSH 5, so no treatment given. Aged 46 returned to a different doctor with alopecia areata (not as severe as previous case) did not report depression, feelings of paranoia + above problems. TSH was now 15. Treatment commenced 50mcg levothyroxine. Retest also revealed thyroid antibodies >1000. Now on 100mcg. Passed Mensa test aged 50. Aged 54 am now doing an MA in philosophy & Mental Health. Am being philosophical about all the wasted years. I hope your article is widely read by general practitioners.-

Ploggy123 profile image
Ploggy123 in reply tononconventional

Thank you so much for your reply. A lot has happened since I last wrote. My daughter was eventually diagnosed with anti NMDA receptor auto immune encephalitis and has been very ill for a considerable time. The symptoms she suffered included the symptoms listed in your post with other more horrific stuff. However, only recently, she had a nodule on her thyroid removed (they did a total thyroidectomy because of the inflammation and look of the thyroid rather than the hemi-thyroidectomy she went in for). I am hoping to get the histology result back from the lab in the near future. She has now got her 125mcgs of thyroxine and I am waiting to see whether the parathyroids are still working.

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