Hi I'm new to this,I'm recycled teenager 75 . I have been sectioned many times and latterly in 1992 I was labelled bipolar .in 2014 I had a hip replacement which triggered phsychosis so I was on Respiridone for a year.
The trouble is that if I complain about my thyroid being out of kilter ,I get forced to have phsyciatric meds so I am terrified even though I have many issues that make me feel ill. Including something not right with the thyroid,though I keep being assured it's ok. I have suffered this since being diagnosed in 1996. I wonder if there is a link in which case I had the thyroid problem long before maybe as long ago as 1965,when I was first sectioned.
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Recycledteenager75
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For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
How much Levothyroxine are you currently taking?
Do you have recent blood test results and ranges to add?
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
If/when also on T3, make sure to take last dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Medichecks currently have an offer on until end of May - 20% off
Many thanks for all the info. I have never had anyone mention Hashimotos in relation to my thyroid/bipolar problem. I know nothing about Hashimotos,and it has never been mentioned by my doctor or endo. The first and only time I have seen an endo was in 1996. I have a blood test done every three months,I am currently on a dose of 100/125mcg on alternate days plus folic acid 5mcg twice a week,I am really fed up with trying to say that I feel really ill,
With no energy and hardly able to function normally.I have pins and needles and numbness and back pain. The test is always ok and of the standard issue only. drs in the surgery are unsupportive and don't seem aware of any other essential tests. It would be impossible to get an early appointment because of the shortage of nurses in the surgery . However,I will study your info and act on it as soon as I am able
Did you have anaesthetic for your hip replacement? Many contain nitrous oxide which deactivates vitamin B12. It doesn't necessarily show in blood tests as the B12 is still there just inactive. Low B12 can cause many neurological symptoms.
Nitrous oxide is often called "gas and air" or its UK brand name, Entonox.
It is used on its own or, often, in combination with other anaesthetic agents.
Key points
• Nitrous oxide is an N-methyl-d-aspartate receptor antagonist and may reduce the incidence of chronic post-surgical pain.
• Nitrous oxide oxidizes Vitamin B12 and can precipitate sub-acute combined degeneration of the cord with chronic use or in patients with folate/B12 deficiency.
• Nitrous oxide expands air spaces and is contraindicated in patients with pneumothorax or recent (up to 4–6 weeks) ocular surgery using intraocular gas.
• Nitrous oxide has global warming and ozone depletion potential and its concentration in the theatre environment is regulated.
• The ENIGMA-II trial showed that nitrous oxide does not increase the risk of death or cardiovascular complications.
From: Nitrous oxide in modern anaesthetic practice - SM Brown, FRCA JR Sneyd, FRCA
UK medics rarely call Hashimoto's, they would call it autoimmune thyroid disease, and virtually always ignore the autoimmune aspect
Vast majority of patients on here forced to get private testing via Medichecks or Blue Horizon
But first get hold of all your previous blood test results to see EXACTLY what has been tested and what needs testing
80-90% of primary hypothyroidism is due to autoimmune thyroid disease also called Hashimoto's diagnosed by high thyroid antibodies
It's important to get both TPO and TG thyroid antibodies tested at least once ......that may have been done when first diagnosed years ago
Medics think testing antibodies is irrelevant because Levothyroxine treatment is the same. However patients need to know. Low vitamin levels are especially common with Hashimoto's and gluten and/or dairy intolerance far more likely
Pins and needles is frequently low B12
You already have low folate. B12 should always be tested when folate in low. They work together
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
Folic acid is a synthetic form of folate. People more predisposed to autoimmune disease have found supplementing methylfolate to be better absorbed than folic acid.
This is due to certain common genetic impairments (MTHFR) that mean folic acid is at best less well tolerated and at worst completely unusable, eventually reaching toxic levels and increasing homocysteine levels.
Both folate & Vit B12 cannot be produced in the body and must be supplied by diet. Adequate levels of each are vital as work together and deficiencies are common in people with low thyroid hormone and/or gut issues, and so requires supplementation.
Good VitB12 advice already given by slowdragon above.
Yes. You may not be bipolar. You may have Hashimotos encephalopathy which presents as making you seem psychotic , for a short time, but it may not be real long term bipolar. that happened to me a number of times. Not for long ( 2-3 few days at a time), but has not for twenty years or more. I now have T3 and T4, Read up about Hashimotos encephalopathy, which can be (and probably is far to often) mistaken for the manic phase of bipolar. if you go to Google scholar then put in Hashimotos encephalopathy (and make sure I have spelt it right first my spelling is awful). It is thought a huge number of people have been miss diagnosed. In psych hospitals a lot of people have thyroid problems. In years to com e it will be seen I think a a huge mistake has been made. It means lithium will not help you in any way, but you might need something calming like a small amount of Chlorpromazine, which is an old drug and even used for anxiety in dogs, but may be the best short term for you, or even a very low maintenance dose (25-50 mg). Not Olanzapine or other such psyhc meds 9which also make people fat). and you probably need both T4 and T3 and need to get that balanced. I use melatonin if I can't sleep. with my doctors blessing. Show you doctor this.
Just to add the thyroid is a major gland responsible for full body synchronisation including your mental, physical, emotional, psychological and spiritual well being.
Some people refer to it as the manager of all the body's parts -
or put more lyrically, the conductor of the body's orchestra.
I remember symptoms from when my thyroid was overactive, and from much more recently when being very ill and wrongly managed with Levothyroxine, and when my cognitive function was severely compromised.
My doctor watched me, over a period of 3 years, go from a working, happy, positive, verbose woman to a person who was basically housebound, and unable to compute words and respond in normal conversations, using notes in appointment so as to remember why I was there, and what I needed to say.
The answer to it all was an anti depressant, which I took as I trusted her judgement. They didn't help any of my symptoms and I wasn't aware that they even worked.
So, yes, when the thyroid malfunctions it can manifest itself in many disturbing ways.
But we seem to be the only people knowing this .???
Graves Disease treated with RAI 2005 and on monotherapy with Levothyroxine.
In 2019 I recycled myself, and am now self medicating with natural Desiccated Thyroid and getting my life back and doing ok.
It is a massive learning curve, there is much to read, reread and understand and with hypothyroidism, that in itself can be a massive challenge.
I found this site about two years ago and am managing to turn things around for myself.
I'm dyslexic, teaching myself to read in my late 20's , it's ironic really.
Reading a book for pleasure was never on my radar, but here I am at 72 not phased by the jargon and knowing people on this amazing site will put me straight should I go off course.
Yes, Elaine Moore's book Graves Disease A Practical Guide :-
" Disproportionate increase in dyslexia and left handedness in patients with autoimmune disease " Chapter 5 The Diagnosis of Graves' Disease page 99 in the old version of her book.
There is also her website, for an immediate reference, though don't know if it covers as much as what's in her book.
My daughter is left handed but no AIT - she had Thyroid cancer ... thank you for your response. I did read a paper once about dyslexia and thyroid when searching for a friend - must have another look ...
So am I. I don't have dyslexia but do have problems with spatial awareness, almost no sense of direction and can't do puzzles where objects are orientated differently. I also can't do mental arithmetic or remember numbers for any length of time without constant repetition.
Wonder if there really is a connection with at least some of these things - interesting.
Thank you for posting Recycledteenager75. Years of misdiagnosis of ME, then dementia, with late and inadequate treatment with B12 injections, had devastating consequences for a member of my family (also with thyroid disease), when injections were withdrawn, causing psychosis and hallucinations. (It's now known that 40% of those with thyroid disease go on to develop PA/B12 deficienciency and vice versa).
Sally Pachlok and Prof. David Smith, both agree serum B12 test levels should be raised as "deficiencies begin to appear in the cerebral spinal fluid below 550 pg/ml. " . Sally Pacholok also quotes an article in 'Neurology', 2008, reporting that low B12 causes brain atrophy and cognitive impairment in the elderly.
"In the elderly, it can cause dementia" says David Smith, Professor Emeritus of Pharmacology at Oxford University.
‘B12 deficiency is more common after the age of 60 and, once levels fall below 500 pg/ml (picograms per millilitre — the normal range being 500 to 1,000), the brain starts to deteriorate at twice the usual rate, making memory loss six times more likely,’ he says.
'Pernicious anaemia is also linked to tinnitus (affecting seven out of ten sufferers), the skin conditions rosacea, vitiligo and psoriasis — it may even be linked to multiple sclerosis, thyroid disease, rheumatoid arthritis and psychosis,' says Dr Chandy, another B12 expert. 'Unfortunately, too few doctors are aware of this or that treatment is cheap, easy and free of side-effects, with robust clinical evidence for its efficacy.’
............
Nitrous oxide given in labour or operations can inactivate B12 in a person with low B12 , as shown in this recent item on 'This Morning' :
You may find, as I and many others on the PAS forum do, that your best option may be to self inject if your GP will not listen. It has sometimes helped to write a letter with history, symptoms and relevant research before making an appointment, and take someone close with you for extra support and witness.
The latest BMJ research document - Summary points only:
Vitamin B12 deficiency is a common but serious condition
Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment
There is no ideal test to define deficiency and therefore the clinical condition of patients is of the utmost importance
There is evidence that new techniques such as the measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency
If the clinical features suggest deficiency then it is important to treat patients to avoid neurological impairment even if there may be discordance between the results and clinical features.
This is what I was questioning in my posts when I joined , I have since seen the light and have you read the side effects of your medications ? 🙏❤Tam x
If advise getting b12 checked as being deficient for a ling period of time can cause mental brakedown sycosis (if that's evemnhow it's spelt) I once read a story of a woman locked away for 4 years in an istatution for the insane she begged and begged to have her b12 and vitamin d tested which they did which was within range but borderline... so it's all to do with our vitamins which alot of thyroid patients are deficient or very low
Estrogen lows tsh so maybe high tsh equals low estrogen. Low estrogen equals low serotonin. Low serotonin affects mood. If you search thyroid estrogen connection. Low energy could be loe progesterone.
Number 1:YOU are the only you! forget the labels and what everyone thinks, only you can live your life and walk in your shoes. Sane people get called crazy when people don't agree with what they have to say. People with new ideas get called crazy until a small majority can see things their way. People who have passion about life get called crazy when expressing their feelings to people who are uncomfortable connecting. What's crazier sleep walking through the on life your given out of fear of embracing the beauty of each day and making the most of it? Find the confidence to be your own advocate! Speak up for yourself! While it is rewarding to have others support and believe in you to find the people who will you have to believe in you. You are a blessing. Be a blessing. Everyday will not be what you want it to be but it is what you make of it. Engage in positive selftalk. Be your strongest supporter! He your loudest advocate!
Number 2: Yes, hormones regulate mood neurochemicals and even what we think of as personality. So if you feel like something is off, then you know and it's up to you to work at self educating and finding what works for you.Don't expect the doctors to have the answer. While they may have the education they are not you they can't tell you how you feel physically or emotionally. A physician who understands whole patient wellness won't put you on psych meds instead of checking hormone levels. They won't tell you it's all in your head instead of acknowledging that they might not have the answer, but they will work with you until they do, or find someone else who may be able to help. Look for we statements and acknowledgement. You are real. What you think and feel are real. A physician prepared to do what's best for their patient will listen to you. You deserve validation don't accept less and you will find what works.
Hi there Recycledteenager75 . Just a thought, can you take someone knowledgeable with you to support you when you next see the doctor?
The reason is that when someone is diagnosed with mental illness it seems almost impossible for medics to take you seriously if you also have a physical illness. Even if, as it is likely in your case, the physical illness is actually causing the mental symptoms.
So having someone to fight your corner might be a great help - especially if you have a friend or family member with a medical or scientific background who can read up on this.
I worked in a care home for several years, and a lady came in with depression after losing her husband. She knew she was physically ill as well (probably triggered by the bereavement), but it took a long time for anyone to take her seriously, even though she did keep saying she was unwell. Her problem was hypothyroidism and eventually she was treated and discharged. Makes me wonder how many other poor souls were physically rather than mentally ill.
Also a friend's daughter has schizophrenia. after the menopause, although still ill, she became much more stable and is able to live an almost normal life in the community. I don't know if she has any thyroid problems but there seems a definite link with mental health and hormone levels.
Her sister also had terrible PMT which affected her very badly emotionally - like a different person at those times. I think she is on hormone treatment and much more settled now
Hi señorita squiffy,In answer to you question having found a definition for hypermobility, the answer is yes I do have joints that dislocate and pop out but no doctors have ever confirmed this. Recycled teenager 75
Ah, ok. That's very interesting. There is a condition called Joint Hypermobility Syndrome or Ehler Danlos Syndrome - Hypermobility type (hEDS). It might be worth researching in case the other physiological symptoms fit. There is a link between the syndrome and both autoimmune issues and anxiety/depression/bipolar. There is something called the Beighton scale which is used to measure the hypermobility of certain joints. You can probably get a referal from your GP to a physio in order to have this measured.
I have never heard of EDS . I think I will leave well alone .I am discovering quite a lot of disturbing issues . I have enough to deal with at the moment and no prospect of seeing my favourite gp ,in fact my surgery has a completely new set of foreign doctors and appointment s have to be booked way ahead. But thanks for your info,on hold for the time being ,but will look into it gradually. Recycled teenager75
I'd suggest getting your b12 and vit d checked as b12 deficiency can cause psychosis bipolar aswell as other mental illnesses can also cripple a person leaving them in a wheelchair just like my mum's neighbour. Poor woman was locked away in an institution for 3 yrs only to discover it was in fact her b12
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