Although the majority of people on this forum are hypothyroid as a result of thyroid antibodies or treatment/surgery as a result of antibodies activity such as Graves disease, there are some people who arrive at the forum who are hypothyroid and do not have an autoimmune thyroid disease. They may have had surgery for other reasons and lost thyroid volume.
At present the NHS treat all the same in that if TSH is somewhere within the NHS lab range then it's fine.
There is some advice about keeping TSH at the lower end of the lab range which may be fine for most people. Judging by this forum it is difficult for those with Hasimotos thyroiditis to overmedicate as FT3 is often low in range when FT4 is high in range.
However, this might not be the case for those without autoimmune thyroid disease.
It is possible to become over treated when TSH is low but within the NHS lab range. At least this is my recent experience.
Unfortunately, the NHS does not test FT4 or FT3 if TSH is in range so it's very difficult without private testing to determine what's happening by blood tests alone.
It is often difficult for a person to determine if they are overtreated because the symptoms of hypothyroid and hyperthyroid can be similar. Or they can be attributed to other factors such as tiredness from a busy life. The symptoms develop slowly so a person can find themselves in crisis without realising, especially when lab tests for TSH are 'normal'.
Until there is better testing and monitoring, it's going to be difficult to manage hormone replacement medication and preventing under or over medication is a real challenge. It is generally assumed that levothyroxine is a tolerant medicine but I don't find this to be the case myself.
I've found it's very important to ensure blood tests 6 to 8 weeks after a change in dose but it might also be a good idea to give a trusted friend or partner a list of symptoms of overmedication (and/or undermedication) to support you to monitor any changes.
There can be other factors besides a change in dose that lead to being over treated. For example, a change in diet, other medications, a change in levothyroxine or change in manufacturer, how you store tablets and so on.
To me, it seems that different thyroid conditions need different approaches and TSH certainly doesn't tell the whole story and isn't particularly useful on its own for monitoring either.
Generally on this forum people are discussing prevention of under medication but if you've ever been over medicated, what was your experience? What symptoms do you watch out for?
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Nanaedake
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# being physically 'jumpy' when startled. definitely
- Possibly being more worried /less able to relax mentally .. catastrophising.
- Possibly frequent urination, feeling of constant tension in bladder.
(No ITU found , but curiously Calcium Oxalate crystals found in urine, and nasty constant pain in vaguely ? kidney area. but ultrasound showed no kidney stones.
Pain resolved a month or so ? after dose was reduced from 150mcg to 125mcg. may have been related or may not . never found out. )
interesting about the ?kidney pain/bladder thing...slight tremor in fingers 'test' is only visible if hold hand out LOOSLY on outstretched arm.. otherwise you cant tell.
Yes, this vague kidney pain and feeling of a UTI is what I get if I try to increase my Levo, as well as frequent urination. Since lowering, it has disappeared. I've only been over medicated twice and I was tired, irritable, sweating, and everything was a chore. Too much Levo also stops my monthly cycle. However, I only get the kidney pain on 100mcg of Levo yet I didn't have it while over medicated on natural desiccated. It seems I only have the kidney/bladder sensations when the levels of thyroxine in my body are high and T3 is low. On natural desiccated my T4 and T3 levels were both high and I didn't have this issue.
for me .. 'overmedicated' with the above symptoms did not coincide with fT4 level.
My TSH was actually more representative (annoyingly they didn't do fT3 on either occasion , so didn't get a total picture)
but overmedicated results were..
on 150 mcg Levo....................................TSH 0.018 [0.34 -5.6]... FT4 19.9 [8 -18] 119%
whereas i was undermedicated on ..
on 100mcg Levo.......................................TSH 0.511 [0.57 -3.6]....FT4 19 [7.9 -14] 181%
my 'usual' TSH was around 0.05 ish for many years, so 0.018 was 'low for me' while 0.511 was 'high for me'.. but then .. my TFT's are always doing illogical things . so i largely rely on symptoms first ,and look at results as an interesting comparison , but i don't rely on my TFT's to tell me anything.
My TSH usually remains elevated. When my FT4 is at 113% and FT3 at 70% then my TSH is still around 1.3. I've never had a TSH under 1.3 on Levothyroxine and that's probably why I continued to have lingering symptoms. I've tried to raise my Levo to get it close to 1 or under 1 but the symptoms are terrible, which is why I'm adding the T3. When I was over medicated my TSH was 3.8, FT4 was about 80% and FT3 was 70%, however the actual level of thyroxine in my body was way over range. The high levels of thyroxine in my body pushed my liver enzymes over range so that's another test I keep track of. When I was on 2 grains of NDT my TSH was 0.05. That T3 really lowers my TSH. I track the TSH, FTs, as well as Total T3 and levels of thyroxine.
Which just goes to prove how very different we all are in out thyroid hormone 'settings 'and metabolism, and why being observant of symptoms and T3/4 /TSH blood test numbers together is vitally important.. i do wish they would test all healthy 20 yr olds for T4/3/TSH and keep the results on file.. it might be much easier to find our balance on replacement hormones if we knew what our 'normal' T4/3 ratio, and TSH level was the first place.
I've said that before as well. Young girls should be getting tested for thyroid disease in their early teens or after puberty. Subtle changes and symptoms should be tracked. Thyroid replacement is one of the top three prescriptions. There should be more research into the prevention or cause of thyroid disease.
Ooh that is difficult to answer. I guess a feeling of not being able to cope/overwhelmed with stressful things that I would usually not necessarily take in my stride, but cope with.
Yes, I would concur. That's how I feel too, overwhelmed by things that are a bit tricky but I would normally take in my stride or find a way to deal with. Things start to feel impossible. I can easily attribute it to other factors without realising its linked to over treatment. So, it sneaks up before I've realised what the problem is.
I find doctors focus on physical symptoms like bowels, stomach, nausea, headaches etc, none of which I suffer with overmedication so maybe they're not aware of the less physical symptoms? Or maybe the physical symptoms would follow if the dose was increased even more?
yes , that's how i'd describe it too.. a stressful event ,or something that might become one .. like ,what IS that weird noise from the gearbox when i'm halfway up a mountain pass in the dark ? or, where IS that smell of burning coming from ? is it MY house ?... things that i would normally be able to handle by taking a deep breath and 'getting a grip' , would seem impossible to deal with calmly when dose was too high , and when dose was reduced a little, a sense of calmness and ability to deal with situations gradually returned.
But then .. it's a fine line .. too undermedicated and i wouldn't be driving anywhere anyway, and possibly wouldn't give a stuff if the house burnt down.
tattybogle and Nellie237, I was thinking it would be helpful to have a list of actual descriptive symptoms from 'real' patients on the NHS website because if I read those then chances are I would dismiss overermedication as a possibility because I don't recognise most of the symptoms on the NHS website although they may happen when seriously very overmedicated which is unlikely to happen to most people unless they deliberately overdosed for a long time.
It seems to me that doctors have a list of symptoms similar to NHS so they're not asking patients the right questions. Therefore patients aren't being alerted to the cause of their symptoms so they can manage their medication better. At least that's been my experience.
It's tricky i suppose ..I'm not sure i'd have 'understood' even if i had seen a better list..... i didn't want to accept that i was 'just' overmedicated at the time, i was pretty convinced there was something else wrong with me .......... after all i'd been on that same dose for about 10yrs so it didn't seem to make any sense it would have become too much . and i think i resented the fact they wanted to reduce the dose ,and i didn't trust them either, as years earlier when they'd asked me to reduce , i tried it for 3 months but it made me feel worse and so i put it back up and they were perfectly happy with my next set of bloods ..... so i just didn't accept it could be that simple, i just thought they were taking the easy option of picking on my thyroid dose as the culprit. (this was all before i understood how to get hold of and understand my own results .. i might have been easier to convince if i believed anyone was paying attention to them, but i'd had 15 yrs of being told 'Normal, no further action' after blood tests on levo that seemed to bear no relation to how i felt )
But yes i agree , they don't currently have any suggestions for noticing 'slight overmedication'.. and even though the signs will be very different for everyone, perhaps i would have been more willing to believe it if i'd read something similar on the NHS.
And it wasn't just me that didn't know for sure.. the same GP that suggested lowering dose also sent me for loads of investigations at the same time to make sure i didn't have kidney stones or cancer... OK if she'd waited 4/6 months i'd have said 'don't bother those problems have gone away on lower dose'... but they can't always wait if they think it could be cancer .
Well, I had a similar round of investigations but different ones. And similar problem trusting the doctors. Mainly because the levothyroxine was such poor quality from the time I lost my thyroid that I was consecutively under and overdosed and sometimes it just plain made me sick from the fillers. I felt the doctors didn't listen or take me seriously when I told them it was the medicine that was faulty, but it turned out to be true. So after 10 years of it, I didn't know what to believe anymore except that I thought the doctors didn't know a thing and didn't care.
Also, the effects of overmedication for me is that it's difficult to be rational because it distorts my perception so that confidence in my judgement is impaired. I wonder if other people have experienced that too?
So, actually, due to the unreliability of levothyroxine up until 2015, this recent experience was the first time I've been able to properly comprehend the effects of overmedication and clearly identify the symptoms.
Maybe other people will respond with their symptoms and compare. Maybe thyroid UK website could add some early symptoms of overmedication to help people think it through?
The longer i spend on here the more i think that the whole thing of symptoms and personal setpoints is so individual , and the issues surrounding equivalence of all the different T4/T3 testing ranges, and the uselessness of the 'normal' TSH range, and everyone different reactions to NDT/Levo brands/T3 dose, all make it so impossible to set any standard rules for anything.. that the best solution is to teach Doctors that they need to build a collaborative and trusting relationship with the patient over time, starting by listening to us and believing us when we say 'something ain't right with me'.. rather than saying 'everyone gets a bit tired'
I certainly agree that it starts with a good relationship and gathering the whole picture, not just relying on one indicator like TSH. And presenting the whole picture and explaining why the doctor thinks the patient is overmedicated would be a helpful approach. If the patient's confidence in their own judgement is impaired then the relationship of trust is imperative. They need to be able to trust what the doctor is presenting, well enough to give a dose reduction a trial.
Some aspect of overmedication can make the person feel fearful and undermine confidence. So fear of the consequences of dose reduction can prevent the patient from complying despite the evidence. So, again, the trusted relationship is very important.
yes . i think if a GP had ever explained how many bodily systems are affected by thyroid levels, rather than minimising the impact to just the very obvious ones at either end of the scale, i would have been much more able to trust them when they said try reducing a little. I think being overmedicated did distort my perception of how i was, and what was wrong with me, and it would have been very helpful to be able to trust the Doctor .. but in todays GP's i'm not sure they are even taught enough about physical or mental symptoms to even recognise it when they see it. They just don't seem to know it affects cholesterol/ reflex relaxation time . etc etc.
If they trained them to better recognise subtle effects of over /under in all bodily systems, so they could explain to us what might be going on, they would probably save the cost of loads of CT scans and other investigations.
I'm wondering whether the signs of slight overmedication are actually different for everyone or whether there are some clear indicators for everyone? Has anyone actually researched it do you know?
I have been waiting to see if others are high on scale of T4 and low TSH and still feel rubbish as you say mainly folks on here have a problem getting hormone increased. I don't have the tremor but have been very anxious my son said I had a phobia I know I need to get tested privately as they won't do T3 but am worried about giving blood correctly. The doctor said over would make you anxious so I certainly am but also so down that it got picked up when I went for pre med for a woman problem op that then got cancelled (not enough beds) still waiting for that and often feel if I wasn't here it would save them the bother of doing the op! when I told the nurse at pre op that it was a thyroid problem she said never heard of it making you down before and had seen many patients who also had thyroid issues, lucky them I thought when I read everyday those on this forum with problems
The nurse doesn't know anything about thyroid problems then so ignore her. Also, a lot of people don't discuss their depressed feelings due to embarrassment or fear of rejection by friends and so on. It is true that if on the correct amount of thyroud meds you should be symptom free.
If you feel anxious for a period if time, it will then make you feel depressed. Over and under medication can cause anxiety so most important to check all thyroid values including FT3.
Because you are feeling anxious, you are probably finding it hard to find solutions to your problems and the blood test feels like an insurmountable barrier. Is there a close friend or family member who could support you to order and do the blood test? Could you ask for their encouragement?
Thank you Nanaedake that makes sense there is a lot going on. I have always been so independent I live alone brought up 4 kids on my own and am still alone I was thinking of asking the doctor if they could give me the blood that they take and I could send it off for private results anyway gonna have my second covid jab today, that has been stressful they keep saying book an earlier appointment but you have to cancel the one you have first then you might have to wait longer I am sure everyone else my age has already had 2 see what I mean I appreciate your comments
If its just TSH, FT4 and FT3 bloods you want then it's a fingerprick test via a lab like Medichecks or Blue Horizon. There are discounts on Thyroid UK 's website. I've done a fingerprick test before and it's easy. They send all the kit and no trouble at all. Just post back the same day so don't miss the post!
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Sudden hypo symptoms with no med change
This is a good example of what present accepted assumptions are regarding T4 treatment, combination therapy re control by TSH levels
