That sounds like she had a very old school GP. Back before the advent of blood tests that's how dosing would have been done. It's still how often how people taking NDT (natural thyroid hormones) dose themselves. I'm sure if you are used to doing that then little harm can come of it, in fact many would likely prefer that way of hormone replacement.
Can't really take it any further then without evidence of anything. I know it's very upsetting indeed having ill parents. This may or may not have been related to her thyroid condition but can't turn the clock back.
If she had/showed signs of dementia, did you or anyone have power of attorney?
My aunt with dementia had a fall, we didn’t know what they did at the hospital, I rang them, filled in the SAR form, provided evidence of PoA, got her full hospital records relating to that trip.
if your father has/had PoA for your mum then he should be able to apply to see her records. He can then share them with you. How much help you give him filling out the forms is down to the both of you (and doesn’t need to be shared anywhere) but he needs to sign the request, and presumably needs to be able to understand what he’s signing. Ask the surgery/hospital for a subject access request. It needs ID for your mum, your dad and a copy of the PoA.
I have been informed by both the hospital and doctor that any POA for my mother ceased on her death. Therefore only my father has any right to se her records, and she previously explicitly refused permission for me to see them.
"Can I access the medical records (health records) of someone who has died?
If you want to see the health records of someone who has died, you can apply in writing to the record holder under the Access to Health Records Act (1990).
Under the terms of the act, you will only be able to access the deceased's health records if you're either:
~a personal representative (the executor or administrator of the deceased person's estate)
~someone who has a claim resulting from the death (this could be a relative or another person) Only information directly relevant to a claim will be disclosed."
toldtoselfdose 'Are there possible side-effects or problems that may have resulted in her following his advice, which she did for at least 10 years.'
Sounds as if this doctor actually had some level of understanding of how thyroid hormones affect us. Probably no more or less than problems than there might have been by following the advice of a doctor who kept her on the wrong dose.
Without having full details of the results of her regular thyroid blood tests (assuming she had them), no-one can realistically shed any light though.
Because she was showing signs of dementia for many years (let my father lie for 8 hours after a fall, refusing to call an ambulance, then tell the hospital that he'd be OK at home, when in fact he would be sleeping on a camp bed under a table and a rabbit hutch. Not the ideal person to "listen to their body".
Sorry, you are obviously and understandably, very upset about what has happened with both your mother and your father.
Thyroid hormone levels affect every aspect of both the body and the brain. People have been wrongly diagnosed with 'dementia', when in fact those symptoms were due to inappropriate levels of thyroid hormone. This can happen whether already on thyroid medication or not. So the 'signs of dementia' that you mention, could be due to your mother having inappropriate thyroid hormone levels, or they could be entirely unrelated.
As already mentioned, without more information, including details of all previous thyroid blood tests, it's impossible to attribute any blame (which is what I think you're feeling), to either the thyroid medication regime itself or to the doctor concerned.
Don't Doctors in UK only get you to check you TSH which is not good enough...for proper tests I've done many privately and spent a fortune on thyroid monitoring ...:)This is what a knowledgeable Doctor and Naturopath from US ( not just a Dr) said recently to me :'Thyroid must be treated by symptoms. The labs don't measure cellular thyroid, only pituitary. The pituitary thyroid works different than the rest of the cells.Finding a doctor who understands this is the challenge. '
Agree....cellular level of T3, the active thyroid hormone, is the key...but, there are no tests to measure cellular T3! So, medics often struggle....they seem to assume the thyroid always works in text book fashion
I need high dose T3-only to overcome a form of thyroid hormone resistance, to ensure a therapeutic dose reaches the nuclei of the cells where it gets to work!
SIgns and symptoms are the only way to monitor this condition
I've recently heard that unbalanced thyroid can affect thinking but I've not heard this about dementia - incredulous! Do you have a source / further information on this topic and what can be done to prevent incorrect diagnosis? OMG!!! I have a hypothyroid diagnosis and I'd hate to think that this could occur . . .
Hi. As an ex nurse many moons ago, the thyroid affects everything so it is imperative that regular bloods are taken and it is checked you are on the right dosage, when I first started I put a lot of weight on, after taking the tablets my weight went back to normal, but since it has been up and down, I say this because it does affect weight, hormones everything. Hope this helps.
I need high dose T3 only and the only way to monitor my dose is by signs and symptoms/ clinical evaluation....admittedly you need to know what to look for but your mother over 10 years or so most likely knew the signs.
My GP leaves me to it...
An old medic friend always said " Listen to your body".
Before blood tests this was routine and I think doctor's powers of observation were more acute. They had to rely on skill more than a screen full of numbers!
If concern arises then I guess we may often look for someone to blame after bereavement (been there...in my thoughts only...it's part of grieving) but it's most likely that this doctor and your mother had a good working understanding when it came to her thyroid treatment. I doubt very much his advice hastened her demise
I would prefer that approach rather than one where my treatment was based on a rigid set of rules that placed me in a category that did not suit my personal needs....as had previously happened to me.
We have to let our loved ones rest in peace otherwise we just unnecessarily torture ourselves.
If you are also a thyroid patient and wish advice feel free to ask.....I see you have just joined us.
I so agree! I am one who on paper is hypo yet when they dose me I FEEL very hyperthyroid and was miserable. Finally my doctor listened to me and lowered my dose from 112mg to 88mg of Synthroid and I feel wonderful@ No more palpitations, heat intolerance, anxiety, agitation, my poor husband didn't do anything right. Even breathing LOL. You MUST listen to your body.
Bear in mind, that regardless of what her doctor did or did not say, it was your mother herself that had the responsibly of actually swallowing the thyroxine tablets each day. If she simply forgot to take them, or took more than she should have done on some days, because she forgot that she'd already taken the dose, this could have contributed to her mental decline.
Doctors write the prescription, pharmacists fulfil it, but the patient them self has the final responsibility of swallowing the pills.
and ….as I discovered when an elderly (confused and virtually blind ) neighbour……she had carers going in twice a day …..but they were not allowed to help her with her daily medication
She had a huge array of pills in a dosset box ……she would generally remember to take them waking up …..would regularly go to bed after lunch….wake up mid afternoon…..and ……take next days pills
Then after a week ….she would of course run out of pills entirely
In the elderly a simple infection eg urine infection, can cause delirium, and heart problems can cause cognitive impairment. Your mother must have been a really good age when she passed.
Cognitive impairment is a vague term and is common as we age. It doesn’t sound like she had an official diagnosis of dementia.
As she had the right to refuse to show you the results, it is likely that she passed the test and was asserting her right to privacy.
After suffering symptoms of fatigue and fibromyalgia - and also a doctor who was ignorant about dosing and sent me into a pronounced state of hypothyroidism - I learned about thyroid medication from this site and listen to my body and self-dose, and now live without pain and fatigue.
If your doctor was regularly checking her blood, he could intervene appropriately. If she was cognizant enough to listen to her body, he probably saved her from years of pain and fatigue.
I hope this is helpful and so sorry for your loss. The loss of a beloved parent is heartbreaking ❤️
I’m sorry you have questions around your mums care. I know how you feel as I have loads around the care of my mum from the consultant she ended up under just before she died. You can ask questions. Look up PALS they will guide you in the right direction. Also, I just found this which gives lots of information about questions you may have after losing a loved one. I’ve left it too late now but still have the questions going around in my head 7 years later. xx
I was told by my doctor that thyroid medications take ages to actually stabilise to the right level in your body. That why I can't get a test until I've been on my changed dose for six weeks, even though I'm convinced it's too high. I'm no medical expert but I would imagine by the time you realise you're getting symptoms, you've been on the wrong dose way longer than if you had a blood test.
No....but we can keep a daily diary recording of signs and symptoms and changes.
A bit of a bind but it can be done.
Also....might there be considerable variation in the time that it takes for T3 to reach the nuclei of the cells...and therefore to feel the effect of the T3 dose.
How do we know that it takes 6-8 weeks for the hormone to settle in the "system".....must admit I've never looked into that.
Might it take less time for some?
As human beings we are all different so I'd expect our reaction time to the hormone to be different.
What is meant by the system.....
The tissues of the body
There are no tests to measure cellular T3 ( heel reflex may be a possibility) so in many ways we are still relying on " how we feel"
Finding the point in the ref range which indicates our therapeutic dose ultimately relies on "how we feel".
Since T3 does not become active until it reaches the nuclei how do we know when maximum effect occurs and essentially what dose we need...."how we feel".
It all depends on the different parts of the body working in "text book" order.
If that "text book" order fails then we are in trouble and we need to find a personalised route to recovery.
Medics don't seem to ( readily) embrace this.
The consequence of that failure is evidenced by the number of people arriving here looking for advice because the treatments used by medics have failed.
Patients then need to find their " personalised route" to recovery.....if they can.
if not....they continue to suffer
If we don't respond to "set treatments" then ( can be said!) it must be our fault or another condition must exist. Really!!
So, patients are left in limbo because medics can fail to understand how complex the thyroid system is.
Like others I've been there but was fortunate to find my personal route to better health thanks to a few experienced and knowlegeable members here.
We need the decision makers to listen....and change their ideas
Testing is important but so is the way tests are analysed... the way the results are understood and used...and the way the patient responds to any resultant treatment.
But in the end patients with capacity are responsible for any decisions made about their treatment.
The question seems to be, was toldtoselfdose 's mother considered to have capacity?
I believe that much of the impact of T4 and T3 occurs quite quickly - in terms of blood levels.
But we have also seen lots of very strong evidence that TSH often takes a long time to recover after being hyperthyroid - often remaining suppressed for months, years or forever.
We also see that in severe hypothyroidism the pituitary can enlarge (put down to the need to produce more TSH to try to increase thyroid hormone levels). If adequate thyroid hormone levels are achieved, by taking any combination of thyroid hormones, the pituitary will usually reduce in size. But while it is enlarged, TSH levels appear to tend to rise faster and further than in "healthy" people.
It also appears to be the case that if someone is started on a full replacement dose, they often feel over-treated. Whereas approaching the same dose in steps (say, 75%, 82.5% then 100% of that dose), over a few months is better tolerated. It looks as though the body adapts to a dose change slowly.
The hormone levels have to change due to dose change, followed by changes to every part of the body from that, and including feeding back.
I very much agree that making notes and measuring what we can is a good tactic.
The six weeks or so seems to be based on people who have modest dose adjustments. If a person has two or more tests in the weeks/months after a change, and the results are plotted, they tend to be more different within six or so weeks than after.
I'd love to see some means of having daily measurements of hormone levels!
My experience certainly showed that small increases are the way to go....low and slow!. But I need high dose T3-only to function
I think we can agree that much needs to change before thyroid treatment improves for those who do not respond to this medic's mantra... "this little white pill taken daily for the rest of your life is all you need to feel well"!
No, she was dosed correctly. That is how doctors should be dosing thyroid medication. Until symptoms are gone. Her doctor would have still been looking at her blood work and ensuring it was in a specific range. My TSH is 0.01, an uneducated doctor would say this is to low. An educated doctor would know it isn't to low based off my Free T3. Which is in range and optimal. You can tell whether your thyroid medication is to high if you have a racing heart and anxiety. Nobody would medicate themselves until they are hyper. Just like no one would allow themselves to stay hypo. You can feel though symptoms loud and clear.
Not that it gets you anywhere now ~( i don't think there is any way you are ever going to find out 'what caused what' at this stage ,and investigating the issue is clearly against her wishes) ....... but do you know what sort of doses she was taking,, and how much she was varying them by ?
No documentation at all on her self dosing. She decided after I hadn't phoned her for 4 days to disown and block her entire family and tell everyone not to tell us if she or my father died. My father was scared into following her wishes and even now that she has died, no-one is prepared to tell me what happened. So my 95 year old father is in a home somewhere - his doctor and the hospital claim patent confidentiality overrules my POA and so he'll die alone or with strangers. What a disgusting system where fear of being sued overrides common sense and decency.
Isn't that illegal? Bloodwork is supposed to be done at least every 6 months. Changing the medication every week wouldn't do anything. It takes 12 weeks for thyroid hormone levels to stabilize. For example, I first took 3 tablets for 3 days, then on the 4th day I took 2.5. After 3 months, I was able to see where my thyroid hormone levels were at. Then I changed the dose of my medication to 3 tablets for 6 days, 2.5 tablets on day 7. Overtime T4 levels increase, not overnight. If I decided to randomly take say double the amount of my medication one day, I likely wouldn't even notice a difference. Unless of course this was the amount needed to push me over the edge and I became hyper. Now if I took too high of a dose for too long, then I would eventually notice. It's weird, her doctor would have no reason to advise her to switch it up daily or even weekly. It would take a couple months for levels to stabilize. Your mom might have been saying that she was told this by her doctor when she wasn't. The prescription also might have always been the same and she just decided to take less of it some days. This wouldn't be harmful because the doctor would know her bloodwork is in the safe zone when she's taking her meds fully. I don't know. She would lose her job if she wasn't running bloodwork for thyroid patients. It sounds very fishy to me.
Also I forgot to say. There is a large correlation between dementia and menopause. If a women is not medicated properly during menopause, if she isn't eating right or exercising enough, then she has a much higher risk of acquiring dementia. Both dementia and alzeihmers is much more common in women for this reason. There is a Ted talk you can watch on the latest research surrounding this topic.
I have had this for many years at the beginning the dosage varies so I have no idea why that was said to your mother, as she should have had bloods taken every 3 to 6 months to check thyroid OK. Sorry for your loss but that is all I know, have you tried googling the idea you never know it might help.
Your doctor will do regular blood tests to check the levels of thyroid hormones in your body before and after starting levothyroxine.
These will allow your doctor to adjust the dose to suit you.
At the start of treatment you can expect to have blood tests quite often but once your hormone levels are stable and your symptoms are under control, your levels will usually be checked once a year.
You may need blood tests more often if you:
are pregnant
start or stop a medicine that can affect the way levothyroxine works
have any symptoms that could mean your dose is not quite right.
3-6 months would obviously give a better picture , but one test a year is all that is usually given by NHS GP's for hypothyroidism patients on Levothyroxine who are 'stable and anywhere within range'
it would be very unusual to get thyroid bloods every 3 months on the NHS.
Evangeline22 'she should have had bloods taken every 3 to 6 months to check thyroid OK.'
In the UK, This frequency of testing only happens in the early stages after diagnosis. Once the doctor and patient are happy that the appropriate dose has been reached and stabilised, testing is typically done once a year.
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Just like no one would allow themselves to stay hypo. You can feel though symptoms loud and clear. 
Thyroxine dose
thyroxine dose
ANGER WITH NHS OVER THYROXINE DOSE
Blood results and thyroxine dose query
Changes to thyroxine dose after menopause
