“Feelings of suspicion and distrust” - known Le... - Thyroid UK

Thyroid UK

127,374 members149,580 posts

“Feelings of suspicion and distrust” - known Levothyroxine side effect

Wired123 profile image
29 Replies

A respected medical website gives this as a side effect of Levo.

Does anyone have experience of this and know of any potential solutions?

Reason I ask is my mother suffers a lot from these kind of feelings.

She always feels she’s being persecuted by someone (even as little as a neighbours hedge encroaching over the fence boundary).

She is even suspicious of her own siblings and feels they are conspiring against her or are trying to sabotage her life - they are not, they are busy in their own lives and (understandably) don’t have any time for her and her drama!

Whilst more commonly her symptoms can be attributed to a mental health condition like paranoia, I’m intrigued that the website mentions this as an actual side effect of Levo as opposed to mental health condition caused by being hypothyroid.

Any thoughts and treatment options would be appreciated.

29 Replies
greygoose profile image
greygoose

Well-known by whom? Most doctors don't have a clue about symptoms and side-effects, so I doubt it's the medical profession.

I'm always very dubious when people start talking about the side-effects of levo. Usually turns out that what they means is what happens if you take too much or too little. Not if you're on the right dose. And it's seems to be very common to atribute hypo symptoms to the side-effects of levo. Not quite sure how you would prove it one way or the other, though.

Can you give us a link so that we can all read it, please? :)

Lalatoot profile image
Lalatoot in reply to greygoose

greygoose I have found it on mayo clinic website as rare side effect of levo. Phone won't add link but I'll try again.

Wired123 profile image
Wired123 in reply to Lalatoot

Yes it was Mayo Clinic.

They also say something similar about Liothyronin:

delusions of persecution, mistrust, suspiciousness, or combativeness

mayoclinic.org/drugs-supple...

Lalatoot profile image
Lalatoot

mayoclinic.org/drugs-supple...

Lalatoot profile image
Lalatoot

Wired I have an elderly friend who is exactly like this and it is to do with her age and circumstances.I have witnessed this too as a sign of old age dementia and as you say other mental health conditions.

I don't think you will find an answer to your question.

Wired123 profile image
Wired123 in reply to Lalatoot

Thanks Lalatoot, yes you’re right it was Mayo Clinic, which is quite a well respected website.

Not sure I agree it’s about old age as she’s been like this since her 40s (and perhaps before).

I take the points about whether this could be down to under- or over-treatment and is a symptom of hypothyroidism as opposed to a side effect of the medication.

Sparklingsunshine profile image
Sparklingsunshine in reply to Wired123

Hi

It could be a sign of a mood disorder, which is where I'm at with my mum. Or could just be that's her personality.

arTistapple profile image
arTistapple in reply to Wired123

She could easily have been suffering non optimum medication all that time.

fiftyone profile image
fiftyone

Many many years ago I was prescribed, unbeknown to me at the time, a massive overdose of levo (250 mcg daily). I suffered terrible paranoia, suspicion etc, thinking everyone was 'out to get me'. I feared someone would kidnap my daughter and actually left her at a friend's for safety. Eventually my husband called the doctor who asked me if I felt frightened etc. When he did a blood test, the doctors finally realised they had prescribed too much levo. They told me to come off it at once for a few weeks. When I came off the levo, gradually rationality returned. I started wonder why anyone would 'be after' me or my young daughter. Gradually I returned to commonsense and went back on levo at a lower dose, so I know very well what it feels like to be overdosed. For me it affected my mind before my body.

Wired123 profile image
Wired123 in reply to fiftyone

Thank you for sharing, I do wonder which idiot thought it was a good idea to dose you so highly and not even monitor bloods.

Her blood results seem fine to me and if anything she appears under-medicated.

She’s on a trial of T3 after I wrote multiple long letters to her NHS Endo who knows all the “problems” of T3 but very little about the benefits - another idiotic imbecile who was frightening her further and making her reluctant to take it!

shaws profile image
shawsAdministrator in reply to Wired123

If you reside in the UK, it would seem that the majority of Endos and GPs (NHS) may not prescribe T3 as it costs more £££s than T4.

buddy99 profile image
buddy99 in reply to Wired123

If your mom is undermedicated that, too, can lead to mental disorders. Personally, before my Hashimoto diagnosis, I suffered from hallucinations and panic attacks. I'm sure that there are patients who have adverse reactions to Levo but I would agree with Greygoose that it is difficult to determine what the real cause(s) is/are. Here is a link to an article on hypothyroidism and mental disorders. psychiatrictimes.com/view/h...

fiftyone profile image
fiftyone

I'm afraid my total trust in doctors disappeared many years ago. I feel the need to constantly check things out online and with others I know to ensure I am getting the right treatment. Even recently, I have found 'holes' in their recommendations.

Ukie profile image
Ukie

Is she on statins? It’s definitely a known side effect of some statins. If she is, ask the doctor to prescribe a different statin instead.

Wired123 profile image
Wired123 in reply to Ukie

Thank you! That’s a very good point, didn’t think of that. I’ll see if that might be the cause.

Thank you again, this might be the missing link.

Ukie profile image
Ukie in reply to Wired123

Let’s hope so 🙂

Blondiejayjay profile image
Blondiejayjay

Has she good levels of active B12? these can be low with thyroid issues.Lack of vitamin B12 used to be described as ‘causing hysteria’ in women. My father in law was a naval medic and I remember reading this in his reference book. The book predated 1950s.

Wired123 profile image
Wired123 in reply to Blondiejayjay

Thanks, she gets regular injections for B12, but it does swing high to low as the injection wears off.

Marymary7 profile image
Marymary7

That sounds exactly like my brother. Known symptoms of pernicious anaemia or a severe vitamin B deficiency. I asked the well know retired doctor C on the sister site on here if this was what was happening and he agreed. Vitamin B deficiency is often another problem suffered by folk with thyroid problems and quite often not diagnosed.

Amethist profile image
Amethist

I agree with Blondiejayjay, these symptoms could well be B12 related. Would be worth getting B12/folate/iron levels checked out. Even being low within range with B12 can still cause symptoms. There are issues with the B12 test.

Lotika profile image
Lotika

I’m slightly more inclined to have a bit of a persecution complex on T4 only, but I am not sure I would say it’s a side effect of the levo; I always assumed - since messing with T3 and finding it much diminished - that it was a side effect of low in range T3! No scientific basis to my rationale of course; it’s normal to decrease levo when adding T3, so presumably one would have fewer “side effects” of it and therefore who knows, but my feeling is that it can be a sign of less than adequate medication in my experience. I feel more chilled and rational with a better fT3 level.

Yppah profile image
Yppah

I felt like that when I was deficient in B12. My head was constantly full of negative thoughts. One week of using a B12 spray a few times a day and my head was nice and quiet.

Sparklingsunshine profile image
Sparklingsunshine

Hi

How old is your mum, my mum is in her 90's now and has some cognitive impairment. She is very paranoid and suspects all sorts of stuff is going on, which it isn't. It can be a sign of a mental health issue, like depression.

Wired123 profile image
Wired123 in reply to Sparklingsunshine

She’s only 66, but been like this as far back as I can remember to my teenage years.

Sparklingsunshine profile image
Sparklingsunshine in reply to Wired123

Hi

Maybe it's just her, you have my sympathies, my mum has always been difficult as well.

helvella profile image
helvellaAdministrator

I suggest noting that the Mayo Clinic website says this:

Drug information provided by: IBM Micromedex

That is, the information is not managed by Mayo and we can expect to see the same lists in multiple sources.

If you look them up, you can find:

IBM Micromedex solutions

Evidence-based drug and disease insights, pricing information, patient-friendly education materials and more – all at the point of care

Get reliable answers – quickly and efficiently

IBM Micromedex solutions now combine the evidence-based clinical content of Micromedex with the industry-leading AI capabilities of IBM Watson. The Watson Assistant allows users to bypass the traditional keyword-based search process in favor of a search bar that accepts conversational queries, allowing clinicians to type questions the same way they would speak in everyday language. Watson then applies its natural language processing capabilities and domain-specific training to efficiently mine the Micromedex content – returning relevant results quickly and helping users make decisions with clarity and confidence.

ibm.com/uk-en/watson-health...

There are, as in most areas, some good and some bad aspects to an AI drug database.

(One good is that we can expect lists to be maintained - I imagine the Mayo page for Liothyronine will pick up new data from IBM Micromedex automatically - and not rely on human editing.)

It is good because it will pick up all side effects. It is bad because it will pick up all side effects.

That is, the lists will become more comprehensive and should include information from, for example, published research papers, which might not otherwise get reported through Yellow Card and similar systems.

But, making it a dumb list gives no context.

I note one symptom, listed as being due to overdose: sensitivity to heat

I argue that sensitivity to heat is common in hypothyroidism (many seem not to sweat properly and have temperature control issues). And, I'm sure an overdose could cause rise in real body temperature.

Does listing it as a symptom of overdose without further information open up the possibility of someone who is under-dosed (hence it being a symptom of hypothyroidism) mistakenly reading it as suggesting that they might be over-dosed?

This is obviously not a new issue. But it appears to get emphasised as lists, however valid, get longer and more comprehensive.

Brightness14 profile image
Brightness14

My mother was always moaning, but only took the occasional asprin.

arTistapple profile image
arTistapple

Since mostly hypothyroidism is treated with thyroxine and very often over or under prescribed, is it not obvious that feelings of suspicion and distrust is a symptom of the disease itself and mostly nothing to do with the patients character? PLUS further erroneous prescribing of T3 will not change this basic symptom. I am so glad this symptom has been brought up I have not seen it mentioned before on this forum or anywhere else for that matter. It’s potentially and particularly a problem no-one wants to own up to (societal problem) and therefore unable to be owned up to until either myxoedma kicks in, or holy of holies we are optimally medicated! In many illnesses there can be heightened or lowered responses to mental/emotional symptoms, pain, intrusive thoughts etc. Why would it be surprising if the same thing should happen with hypothyroidism? In my view if the patient continues to display this ‘symptom’, this could be a vital measure of effectiveness of medication, if indeed the symptom was more easily able to be owned up to. From a counselling perspective there is a word for this behaviour (I think but don’t hold me to it) “transference”. This is a very horrible life and even soul (at the deepest level) challenging symptom that one can dump on anyone they speak to. Think of your own reaction when you perceive this behaviour in someone else! So think on how a doctor might respond. They are allegedly human so they too might recoil from this stuff - even the idea that we are cheesed off with our treatment makes them recoil or become strident with any of us who dare to challenge it. If it’s used to ‘right us off’ and I have reason to believe it could be, then that is disturbing. It needs to be taken into account just like any other symptom. As with any other hypothyroid symptom probably not everyone gets this one. If one has suffered hypothyroidism for years it’s almost a given that late diagnosis or improper medication will bring about this very symptom. Perceived even as bitterness. However I would like to remind everyone that “just because you are paranoid does not mean they are NOT out to get you”.

BiscuitBaby profile image
BiscuitBaby

I agree with others when they say it can be attributed to other mental health issues particularly in older folks. Also possible more linked to under treatment rather than the levo itself??? Maybe?? In my case my suspicion and distrust is directed at the medics I've had to deal with over the years!!! Not the levo I don't think!!

You may also like...