Evening all, hope those of you in the UK have had a good bank holiday weekend.
Mine could have been better…
I ended up in A&E on Saturday night with a racing heart (at times around 150bpm) after none of the tricks I’d read about would bring it down below 100. And when they tested my blood pressure, that too was rather high—160/110.
Now… I know I never did follow up from my post back in October here: healthunlocked.com/thyroidu... That’s because there was nothing much to say. On that occasion, I turned out to be a medical mystery. I didn’t actually end up having to fess about taking Armour after all. All the blood tests came back in normal ranges, bar TSH, which was suppressed like it always is. They only tested FT4, which was at the top end of the FT4 range. Anyway, having dragged myself to the doctors on that occasion in panic, within days I felt much better and as all the bloods were normal decided not to do any follow up and put it down to one of “dem things”. I knew they’d only fixate on that TSH result and where would that have got me??
Fast forward to December, where I finally got agreement to reduce my hours to 24 a week over 3 days. “Result!” thought I. That should bring my stress levels down.
And maybe it would have gone, if my boss had taken anything off my plate. Or advertised for someone to do the part of my job I no longer had time for. Instead… drumroll, I’ve been doing more than a full time job in 24 hours a week since December. Meanwhile, dealing with Dad’s estate has been a nightmare—the solicitors keep making mistake after mistake and it’s costing loads more money than it should. I’m stressed to the nines; it’s horrific. And the court case around my sister’s assault happened and went in a direction that has only caused more drama (won’t get into it now but it’s not good).
My body seems to have finally cast a vote about how it feels about that stress, with the racing heart (albeit thankfully no signs of erratic beats per the ECG) and elevated blood pressure. And when the young and obviously quite new doctor at A&E asked about whether I had any thyroid issues, the truth tumbled out (I could guess they were going to test TSH anyway and that it would save a conversation later).
He’d never heard of Armour. And completely predictably began to fixate on that, despite me trying all the sane and sensible conversation about “I test regularly, I’ve been on the same dose for 8 years plus, I really don’t think that’s what’s going on here.”
I was allowed home after 6 hours (it was midnight by then) and told I’d be called back to a Same Day Emergency Care appointment the next day. Except I wasn’t. No phone call. Not being a fan of hospitals, I left it until today. Then called them.
“Oh,” says the nurse on the other end of the phone. “The SDEC referral was declined. You should have had a call. You’re to have a medication review with your GP.”
“Declined?? Right,” says I, a bit lost for words. “I’m not on any prescribed medication. There’s nothing to review. Can you at least tell me whether all my blood test results were normal?”
They are all normal, apparently. So who knows what I’ll be discussing with the GP. Except the Armour, right?
I don’t even know whether I’m supposed to ring the GP or whether the onus is on me to ring them? I guess I’ll be ringing them.
Meanwhile, my heart rate is down quite a bit (thank goodness, it was sooo uncomfortable) and so is my BP. I think I can probably put this all down to an excess of stress (and cortisol??). And maybe a rogue virus perhaps?
But what a palaver. I’ve ordered a Blue Horizon test to see what my thyroid levels are doing, as you can practically guarantee they didn’t do a FT3 test.
As always, not entirely sure why I’m posting—catharsis, maybe? For sympathy even? And if you’ve read this essay, thank you. Please wish me luck? xx
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Jazzw
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I think you should have a serious conversation with your employer about your workload! It sounds awful. Presumably you’re now being paid for 3 days work rather than 5?? So they need to organise an employee to job share. If not, I recommend looking for alternative employment. Your health must come first. I know from experience. Good luck.
Hi. I'm very sorry to hear about all your difficulties, including your Father's passing. I lost my Dad too, and the stress I went through alongside a full-time Professional career and being a single Mum was off the scale. It all definitely spiralled me into illness and my Hypothyroid diagnosis & then other illness on top. I feel for you about your issues at work too, and they are totally out of order!! Having had a very very long career in HR I'm going to PM you with some advice incase it helps. Tc 🙂
Hello, exactly the same thing happened to me regarding reducing hours, but still expected to do the same amount of work, and yes, reduced pay, and no, no help.What is wrong with employers who take advantage of their staff when they ask for help during a difficult time, whether personal, or medical, or both.
I ended up more ill, and eventually lost my job because I couldn't cope. I was a cook, at that time, (although through my life have had a wide variety of jobs), so on my feet all the time.
I also had other personal family, financial and housing problems, which I know didn't help.
Sometimes, I really believe our mind, and body shows us that we are not invincible and that we need to stop, however, this is not possible in today's world.
I, too, have ended up in A&E. They were rude and said I needed to deal with my GP and not waste their time.
Had done that, over and over again, to no avail. So, in a nutshell, get on with it.
I am sorry that things are extremely difficult for you, and sincerely hope you give yourself some slack. You are not alone.
Not that that helps much.
Please take care. Let it out. The frustration I mean.
How dare they tell you to stop wasting their time? Wow. Everything on line says if your heart goes fast, go to A&E. I really really didn’t want to go—I put it off until the evening hoping things would calm down but knew that my whole family, friends and work colleagues would be mad at me for NOT going to A&E. It’s not like seeing a GP is straightforward anymore.
Yes, but no. I am now under endocrinologist and on T3 only, which, for me, is so much better. However, NHS rules prevent prescribing sufficient T3, because they base all their decisions on TSH.
I have gotten slightly better, but am still experiencing all hypo symptoms and am housebound. I feel I need an increase, but computer says no.
I may be able to get an increase due to a referral made to psychiatry dept., but am waiting for the wheels to turn for endocrinologist contact.
Do remember that you are fully entitled to the actual results of tests wherever they were done. You might have to contact the hospital/A&E directly - no idea how these things are handled across the UK!
That’s a good point—I’ll see if I can get them, thanks for the thought. I’ve looked on the app but it looks like only the GP-ordered tests get recorded there. Though maybe they’ll show up in a week or two?
I hadn’t heard of SDEC either until a couple of years ago when my late father was referred to one. No one gave me any clue in Saturday night that the referral could be declined. A bit off, methinks, that no one even thought to phone me. But on the other hand—I’m also not even surprised anymore.
And they wonder why we go it alone with self treatment?
I get my hospital results through "Patients Know Best." I'm not kidding, that is the name of the program! Might be worth joining up if its available in your area. manual.patientsknowbest.com
I've heard of this website before but have never really looked into it and what it offers. I remember the first time I read about it I wondered what the relationship between the website and the NHS was. How do they get hold of people's health records? I have never followed this up.
They’ve got nothing for Powys. The nearest to where I am (and where my endocrinologist is based) is Shrewsbury and Telford which is across the border in England…
My hospital and GP use MyChart - I get to see the results before the doctor does. It’s amazing how quickly some test results are put up - I’ve even had them in the afternoon for morning blood tests before now.
What an awful time you’re having.
You’re not by any chance taking Omeprazole or Naproxen for anything are you. I was prescribed both when I fractured my sacrum and my heartbeat shot up and stayed there. It is a really horrible feeling - what I can never understand is how your heartbeat can go up when you exercise hard and that feels ok but when it went up like it did then it felt really horrible.
No, not taking either but I have suspected a mild intolerance to ibuprofen previously. I had a cold last week and was using it to deal with some of the symptoms and now I’m wondering whether it could have had anything to do with this. Avoiding now, obviously.
If you ask, and they turn up anyway, then pretty much "So what?" They can always turn round and explain you'll see them automatically. But I have my doubts that will happen. After all, until they actually check, they don't know that you have the app. You could come from one of the other three nations which don't have a properly linked app!
Saying blood tests are normal is not much use, especially for thyroid function tests. A low TSH usually signifies the combined levels of fT3 and fT4 are too high. It doesn't matter that each is within its reference interval if both are above (or both below) average there may be something up.So, a TSH of zero is a warning sign. You then have to see if it is low because you are on too much hormone, the pituitary has a problem or you simply can't exist on lower doses. In the last case there's a difficult choice between a reasonable life and cardiac risks.
On NDT you would expect fT4 to be low or low normal because NDT has proportionally little T4. Although you didn't get an fT3 result it would have been high. On high doses of hormone the heart can be fine for several years and then run into problems, the heart gradually changes structure if hormone levels are too high or too low.
In your case I suspect if it is a combination of high thyroid hormone and stress. If you need this dose of hormone then your doctor should look at what they can do to protect the heart, such as an appropriate beta blocker (NOT one that affects thyroid hormone function). You should also dp what you can in terms of exercise and stress relief.
Many patients have to make the difficult choice between a satisfactory life and cardiac risk. The answer is to find out why patients need supra physiological doses and tackle the root cause. Sadly endocrinologists are scared of even acknowledging this.
You make very good points. I really miss having access to Nature Throid. I know that in theory it shouldn’t be much different to Armour but it suited me so much better. My FT4 stayed low normal—just as you say it should—with my FT3 up in the upper quartile. Blood test results are very different on exactly the same amount of Armour, with FT4 much further up the range.
The trouble right now is the fear of doing something that might make me feel even more ill. I’m game to try reducing my NDT dosage, it’s just the unknown result
Which is why I’m starting with a test and will go from there. I also know that my GP is most likely going to fixate on my self medicating as the cause. In their shoes I probably would too.
An interesting post Jimh111, and I don’t want to commandeer Jazzw’s post , but as I am on combo T4/T3 for 6 years I have been trying to get my FT4 and FT3 up into the 50s% even though my TSH is rarely 0.03 and more frequently 0.01. In the last 4 years Long Covid has meant high HR, and apparent high BP, but in Jan.a tilt test table showed on standing I had postural hypotension (60/40) and it was thought to be this that drove the high HR of 130+. However barely through the door, before the tilt test, the Falls consultant jumped on the low TSH as the cause of the high BP ( the low had never been picked up before with ecgs, echocardiogram etc) and high HR. Are you suggesting I should reconsider and downgrade my t3/4 dosage, or conversely how do you test for pituitary problems?
Commandeer away, Judithdalston. I’ve felt a bit despondent since reading this earlier as I’ve always believed that if FT3 and FT4 are in range all is ok, despite a suppressed TSH. And indeed, that’s a viewpoint expressed a lot here. If I’ve been wrong about that then… not sure what to do.
My situation seems to be being triggered by stress and overheating at the moment. It’s 2.25am in the morning as I write this. I was dreaming about something where I wasn’t going to be allowed to call something by a particular name because it didn’t qualify to be called that (all a bit odd!) and even in my dream was telling myself to calm down about it because it wasn’t important. When I woke up I realised how hot I was! And that sure enough, my heart was starting to race I’ve got up, concentrated on my breathing, drunk some cold water and seem to have slowed things down a bit again.
The bit I’m finding puzzling about all of this is that if it’s really that I’m taking too much thyroid medication, how has this all come out of the blue? Wouldn’t it have had a more gradual outset? And wouldn’t just the act of taking NDT result in it getting worse in the hour after taking the dose? When it seems to get better during that hour, not worse?
Sorry to hear you’ve had such troubles with Long Covid. Sending a big hug xx
I would try reducing your NDT and see how you go. My hypothyroidism was caused by PBDEs, flame retardants in the environment that inhibit the action of thyroid hormone. They don't affect the pituitary because it has different receptors. They cause a form of peripheral resistance to thyroid hormone. So, if the level of these disruptors falls you need less hormone. This happened to me and I got tachycardia and from then on needed a lower dose.If someone is on high doses it's a good idea to try a slightly lower dose every month or so to ensure you are on the lowest effective dose. Getting hoe at night might be from too much thyroid hormone or from other hormone problems.
Thanks Jim. I’ve cut the edges off the two halves of my NDT today—not very scientific LOL but if I’m going to reduce my dose accurately I need to buy some 1 grain tablets and they’ll take a week or two to come. And I’m scared to lower too much in one go in case I somehow make this worse.
It’s the feeling more than anything this morning. I feel so churned up. No appetite. And scared.
Just had a call from the A&E consultant who said my FT4 was “normal” at 18 (range was 12-21) but my TSH is suppressed (as I knew it would be).
'The bit I’m finding puzzling about all of this is that if it’s really that I’m taking too much thyroid medication, how has this all come out of the blue? Wouldn’t it have had a more gradual outset?'
Not necessarily. The body is clever at trying to mediate thyroid hormone levels to ‘normalise’ but over a long term at the expense of other systems. Then there is compromise and windows of tolerance, until suddenly one day that point is tipped and those subtle signs leading up that maybe you missed/misinterpreted turn into much larger symptoms/side-effects.
Inner heat and a rapid heart beat are both classic signs of over medication. I agree with Jim to try reducing your dose. I had to reduce my dose as I slowly became more well.
Thanks Radd. I’ve cut the edges off the two halves of my NDT today—not very scientific LOL but if I’m going to reduce my dose accurately I need to buy some 1 grain tablets and they’ll take a week or two to come. And I’m scared to lower too much in one go in case I somehow make this worse.
It’s the feeling more than anything this morning. I feel so churned up. No appetite. And scared.
Just had a call from the A&E consultant who said my FT4 was “normal” at 18 (range was 12-21) but my TSH is suppressed (as I knew it would be).
No, they didn’t test it. Of course. I’ve got a Blue Horizon test coming tomorrow… Pity it’s a bank holiday week. Why do these things always happen on bank holidays?
Yes it’s rather confused me too! I got very vivid claustrophobic nightmares from a BP/HR drug, bisoprolol, and even though this was removed by the Falls consultant in Jan. the feeling remained ( we had two 2 hr power cuts at night and I was really taken aback by the anxiety in the dark, otherwise fortunately not anxious). You haven’t been put on a BP drug have you for HR? One of the higher HR I happened to catch by just having my oximeter in my pocket at the time was 150 from just struggling to get my coat on! But my last Ft3 a month ago was 5.5 (3.1-6.8) so not the obvious ‘over med.’ so beloved by physicians. Similar returns of big hugs x
Yes, always good to do some research on what the drs.want to give you. I’ve been researching another of my BP drug’s side effects today, and in US articles find doxazosin is known to give orthostatic hypertension as a side effect, and avoided there, yet I already take it morning and night, and it was one of the suggestions by Falls consultant here that I might need to increase dosage at night! The US article also says ‘ effect may worsen if used with other hypertensive meds’…so my other 3 then! Sometimes it feels like I should get my own prescription pad, and get on with it!
With postural hypotension they should definitely be testing your pituitary, checking other pituitary hormones and perhaps doing an MRI. It would also explain a low TSH.
That’s interesting jimh. Can you say more about this? My son has recently been diagnosed with this. I don’t think they tested his pituitary. Consultant thinks it was linked to a virus but that was a guess.
I don't have much more knowledge of pituitary other than measuring other pituitary hormones and if they are low doing an MRI scan to check for abnormalities.
I think pituitary investigations are only conducted when hypopituitarism is thought the reason for the postural hypotension.
When a tilt table (or active stand test (NASA lean test) have diagnosed, then the reason is thought to be an autonomic abnormality of the nervous system, eg not pituitary hormone associated.
Think early in my Long Covid my private endo asked for hypopit.to be tested by GP as had had a low mineral blood result ( was it potassium?) , but hypopit. test was ok. Never get to see my GP, or even talk on phone, despite all my problems…I just research and send them requests for next referral! Waiting feedback from what to do next re dysautonomia from either falls consultant or Gp as they got results of 24 hr Bp test back in mid March….that might include suggested other tests.
You say: "A low TSH usually signifies the combined levels of fT3 and fT4 are too high. It doesn't matter that each is within its reference interval if both are above (or both below) average there may be something up. So, a TSH of zero is a warning sign".
However when reading Paul Robinson's Thyroid Patients Manual on dual T4/T3 dosing he says (P152) the signs and symptoms when T4/T3 dosage is ideal:
"TSH could be near the bottom of the rangeor suppressed below it (but remember this is not always the case for some people and not the goal of treatment.
FT4 could be mid range or above ......
FT3 is very likely to be elevated into the top half of the range or near the very top...."
I don't think so but I don't remember if I have this book or have read this page.What I am saying is that in healthy people (and most patients with primary hypothyroidism) the pituitary responds to the combined effects of free T3 and free T4. So, TSH can be a good marker for overall thyroid status.
However, many people have a pituitary that doesn't secrete as much TSH as you would expect. Thus could happen for example when there has been high thyroid hormone levels for some time, such as after Graves' disease or other forms of hyperthyroidism . This is called a down-regulated axis. It could of course happen in central hypothyroidism where there is a problem in the hypothalamus or pituitary. In all these cases TSH is not a good marker for thyroid status and should not be relied upon.
Another case is where e.g. there is resistance to thyroid hormone in peripheral tissues or problems transporting hormone into cells. These come under the classification of "Impaired Sensitivity to Thyroid Hormone". In these cases TSH is usually reflecting thyroid status in that fT3 and / or fT4 are higher than usual but they need to be in order to achieve sufficient hormone action. There may be need for caution because some tissues may be hypo and some hyper. So, a low TSH is indicating care is needed.
Paul's statement that TSH could be low for sone people is I think spot on, it will be normal for others. He also points out that a low TSH should not be a target TSH can be really useful, it can also be of little use, each case is different.
I’m sorry to hear what is happening with you Jazzw. I find health problems escalate with stress. Is it time to get another job or get some coaching in how to put boundaries in place so you’re not being exploited? Good luck 🤞🏼
Re. Stress and stress management, have you got access to, or the ability to find some coaching or counselling? My work has an EAP scheme which gives us access to 6 free counselling sessions for example, though I’d thoroughly recommend coaching if you have the means.
I say that as it helps us to understand why we respond to situations in the way we do, and why we don’t (& I am making a bold assumption here) advocate or push back on certain things despite the stress it causes us, and to help us reframe that thought process so we can tackle them. Life coaching can of course address far more than that, but that was why I thought to mention it to you.
Now, your work place must reduce your duties in line with hours. It is 100% their responsibility to work out how the balance of your role will be handled (from a legal stand point - your HR team are quite likely unaware of this, but if you’ve a union rep you can ask for help, they won’t be!). So, if you feel able to, draw up a list of duties you will undertake on your 24 hour contract and also one outlining what you won’t now be doing. Ask your manager to agree to it and go from there. I’d also ask for remuneration for the overtime your have worked to date as they’ve in essence “stolen” your time.
I do hope you get everything sorted. Solicitors are a pain, and it may be worth making a formal complaint there or moving to a different firm? I’d certotell them you’re expecting reduced fees to reflect the auality of the work, and to compensate your family. If you chose not to that’s obviously fine, but don’t carry the frustration still. It’s only sensible to carry stress about things we can’t change, and to change the things we can as needed. If we can’t control it just try and accept it being as it is as no amount of worry or stress will help - does that make sense?
I hope very much you’re feeling better soon. You have an deploy on your plate, and asking for help is a very good thing to do x
I work for a large organisation and I’m certain HR don’t care. That said, you’re right—there is an Employee Assistance Programme. I could certainly try it.
I think what sent me off the edge before the weekend was discovering that there wasn’t actually any money in the kitty to fund a replacement for my lost hours.
Ah, but there will be as they’re saving money on you. I had a similar issue years ago at a large aerospace firm. The union (and I say this as a very non-union person at that point) were beyond helpful in resolving the unfair expectations my exec had at the time.
The EAP should also be able to guide you on the legalities of them having unreasonable expectations. But, I would suggest proactively going to your manager with a plan of what you’ll do, and who might be able to support other tasks you won’t be carrying on doing, subject to their load and agreement. That way you demonstrate being wholly reasonable. Ultimately it is a problem the company need to resolve using their resource capacity planning procedures (which they probably can’t, but they won’t want to admit that, and also it’s not your problem).
It’s not easy, but worth persevering. I’d also recommend holding your boundaies firmly I.e once you’ve “agreed” your duties don’t help or do extra hours unless absolutely unavoidable. As soon as you soften them, people tend to keep nibbling away at them which leads to scope creep and stress. It will likely feel incredibly uncomfortable to begin with, but they’ll learn, and it will become habit for you in time. My coach taught me that whenever we say yes to something, we are inherently saying no to everything else, which was all I needed to hear to change my people pleasing ways 🫣😆 Hopefully that thought will help you too 🙂
A lot of very practical advice offered already, so I shall just send you a big hug, - you've a lot on your plate, and the sooner chunks of it are dealt with, the better....
Ref your job, it’s unacceptable that you’ve reduced your hours to support your health and are expected to complete the same workload!
Are you in a union? Please ask them for advice/support. Also consider asking your gp to sign you off for a week to help you recover. Then have a serious conversation with your boss about your hours/impact on your health. When your health impacts on your job, you’ll get no sympathy from your boss.
So sad to read of your many problems...so overwhelming for you. Do hope life soon settles down for you. 🕊
Have read there are issues with disturbances in the thyroid, post vaccine. The internet has the research info. I have friends and family coping with recent high BP - hence my interest.
This is on my mind too. Trying to rule out the obvious first. And also, I have just had a cold that in theory could have been Covid (no one tests anymore do they?). The longer term issues in the Covid space are going to take years to fully emerge but there’s no doubt they’re going to be significant.
Hi Jazz. Sorry to hear you're having such a tough time of it .
re. this often stated idea that "if both hormones are in range you can't possibly be overmedicated regardless of what TSH says ".....
.... given that we also use the argument "we are all individual" .... the above assertion has never made any sense to me .
We can't reasonably assert that 'T4 / or T3 is only 25% though range, but that's too low for me i need an increase " ... while in the same breath asserting that "they are both 95% and this can't be too high for anyone because they are in range" .. that's just illogical .. either ranges are a law that applies to all of us all of the time.... or they are not. We can't have it both ways.
We are individual and if an individual needed ,lets say, 75% for both T4/T3 at some point in time , then having 95% of both is highly likely to make them overmedicated at that time.
Being ok on a dose for several years previously does not mean we always will be ok on that dose ..... our needs can and do change , sometimes for no apparent reason, so even though you were ok with a certain level before , it's perfectly possible you now need, or tolerate, less .
eg. I took 150mcg Levo for about 14yrs , then became overmedicated on it , even though blood results were not much different to my 'usual' (TSH usually 0.05 ish was just a smidge lower at 0.018 .. fT4 was 111% but it's been higher than that both before and since without causing any symptoms of overmedication )...yet despite this i developed what i now know are symptoms of overmedication for me , although many of them were not immediately recognisable as overmedication, so i didn't realise (or believe ) i was overmedicated until i tried reducing the dose and found it improved them .
I genuinely thought i was dying of cancer . but similar to you, there had been a heck of a lot going on ~ i'd lost 2 parents in short succession to old age , and 2 mates suddenly to cancer, so loads of stress and all the house clearing etc to deal with , but i felt so awful in so many weird ways that i thought i must have something very nasty going on.
So I reduced to 125.
(rather reluctantly, cos as you say , the fear of making things worse is a biggie when you are already in a mess, )
....and after i reduced , everything improved ... it did take time , if you reduce don't expect an immediate resolution .. some things improved a little bit within a few wks .. some things didn't improve at all until several months had elapsed... but they did all improve.
And it wasn't a one off blip due to all the stress .... i seem to be needing less as i get older ... the above overmedication happened when i was 49, i'm 57 now and have since reduced twice more , I am currently trying 87.5 as my fT4 is over range on 100 and i was starting to notice pulsatile tinnitus, and some heart flutters occasionally in the evenings, and these have more or less stopped after a couple of months on 87.5mcg . i have yet to decide whether to stay on this lower dose or go back up a bit ,or to add a bit of T3...... but nowadays if in doubt i will always try a small reduction for a few months first just to see if things improve, or worsen.
Don't be a slave to ranges (in either direction), listen to your body first , and let ranges come second to that .
to be honest, i realised my ego had a lot to do with my previous reluctance to consider a reduction .....after being ignored/ gaslit for many yrs pre-diagnosis and whilst titrating dose up to 150mcg , having a GP ask me to reduce dose always felt like they were inferring 'you are not as unwell as someone who needs a higher dose' ... it just felt like more gaslighting and this triggered me to resist any suggestion that overmedication could be the problem .... but actually it was.
I recognise so much of what you say there. Appreciate you writing it. xx
And you’re absolutely right. I’m fairly sure other hormones—oestrogen being the biggie—have fallen right off recently due to other delightful symptoms I’ve developed in the last 6 months (who’d be a woman? Menopause is an absolute b*tch). By the way, I thought I was done with menopause years ago but it seems it still had some gifts left for me. My working assumption even with all that going on was that the continuous elevation of cortisol (which has been on the high end for years—a reason I’ve taken to avoiding Blue Horizon as they will insist on testing it) had a lot to do with it.
So if other hormones have fallen off, it does make sense that I might need less thyroid hormone.
Happy to try it. And now that my GP is going to be informed I take it (not gonna lie, the need to have a conversation about that is not helping my stress levels any!) I guess I’ll have to. I just hope to goodness that I end up with someone open to working with me on getting it right and isn’t just obsessed with raising the TSH no matter what the FT4 and FT3 levels.
I am 70, well past menopause and like both of you Radd and Jazzw, been gaslight by GPs for years refusing to believe you can feel unwell on 100-150 levo as your FT3 is not even in range….so it’s hard to go back to the idea you might be overmedicated now. It’s so difficult to unpick symptoms that might be thyroid related from lots of other diagnosed conditions ( never mind undiagnosed in my case related to damaged pancreas and no gallbladder). Radd although you didn’t feel ‘over med.’ your FT4 was well over range, so surely easier to believe perhaps you need a reduction in levo. But Jimh111 seems to be back to the idea you know you are ‘over med.’ as your TSH is very suppressed regardless where in range your FT3/4 is…bit difficult to get your head round that!
I have no kind of medical background but I can understand the point of view of your health specialists. If I am reading it right, you have been self medicating without a specialist overseeing your intake. I would definitely be looking at what I was putting into my body. If a specialist responsible for your health care found this out, they would be concerned- if they take on treatment of you while you’re doing things out of their control they could end up getting the blame for things that happen. This might be why they cancelled the phone consultation with you.
Other than that, I had an almost identical situation going to the emergency department last year May bank holiday, due to racing heart. I was diagnosed many years before with an irregular heart beat but haven’t needed medication. But last year was more severe and due to other symptoms I was already waiting for tests to ascertain if I had thyroid disorders. The hospital tested for various things in addition, that’s when I was diagnosed with hypothyroidism, but they also found decreased kidney function. I also had an intern who was very attentive. He happened to ask if I was suffering from stress, and I was, incredibly so, also due to issues with my late mothers estate. I was told that stress affects body functions such as blood pressure that in turn affects kidneys etc. So in my case I blame the breakdown of my health on stress, along with ageing. But, important to note, I was not previously on any form of medication otherwise I would be suspicious of that instead. I have since been on a tiny dose of thyroid medication and I started eating a kidney friendly diet and have had no recurrence of the disturbing heart situation. It’s still a little irregular but has been for over 20 years and doesn’t affect my life.
Absolutely. I’ve said the same myself in one of these posts.
Stress is so unpredictably predictable. But also chicken and egg. Am I coping badly because I’m stressed? Or am I stressed because my body isn’t up to coping because something is out of whack?
As usual I like tattybogle explanations, especially the reference to over medication due to no longer needing that level of meds.
Also, because you are ‘overworking’ are you paying attention to your calorie needs? Someone (and I must check and acknowledge them) pointed out to me that my nighttime surges in HR and BP could be down to faster falling carb levels. This makes sense when you think about ‘overworking’ and taking thyroid meds. The medication itself requires good quality carbs and good levels available to keep the metabolism working, even overnight and therefore may also need an uptic in carbs due simply, to support medication working as it’s supposed to. I am careful with my food quality but a bit remiss in the organisation of the food itself. I am working on this anomaly of needing more carbs dispensed a bit wider in the day right now.
My cortisol levels (often blamed for this) turns out are OKish if low. Not brilliant but … You however have been good with your meds. Perhaps an experiment by ensuring you have some good quality carbs a bit later in the day?
This is a recognised ‘thing’ in diabetes and even rarely in hypothyroidism (I have a paper, I can’t find just at the moment but will look for it for you).
Even when we seem to be doing well (you not me) it seems we must remain vigilant. Sigh.
I am careful with my food quality but a bit remiss in the organisation of the food itself .
lol, me too
(good carbs later in the day is not an issue for me , but eating enough calories overall probably is .. and making myself have enough protein and calories earlier in the day before i try to do stuff is also ,erm , not one of my best areas of discipline.
i wish that instead of giving us free prescriptions for being hypo , they would give us a cook...
'food organisation ' has never been my best point ... left to my own natural instincts i'll run on fumes all day cos i don't want to stop for lunch, or i'll not have a protein breakfast cos i much prefer marmalade.
annual report ~ "Tattybogle tries hard sporadically, but could do better".
Yes I have been trying Intermittent Fasting. In fact it’s been quite easy because (as a support) I was not feeling good. Lost a bit of weight but again at what cost? However with no change to diet, weight and bloating started again. BH! Now dropped my Levo by a whole 6.25 mcg and feel slightly better - could be that.
Now, you may be on to something with this. I’ve been deliberately trying to lose weight and have lost almost 2 stones over the last few months. That’s the result of another long term health issue that worsened recently—pelvic organ prolapse, which in turn I think worsened because of a major drop off in oestrogen (just a guess given the symptoms—but pelvic health physio suggests that’s the case). If I’m going to need surgery, it’s more likely to fail the more I weigh. And I’m still around 4 stones above that Holy Grail weight that would give me a BMI of 25. Not mentioning that because I think BMI is a good measure in all situations, more to get across that I’ve still a way to go.
So my carb intake has roughly halved. I wouldn’t call it low carb exactly—but I’ve cut out nearly all processed white stuff.
I thought I was doing the right thing. Still not sure that I haven’t. But the effect on thyroid meds is perhaps something I should have paid more attention to…
You and me both - maybe. Unfortunately it’s impossible to know unless we try to sort it out from that angle. Another ‘thing’ on our already long lists!
On the plus side, our doctors really ought to love that we’re so invested in our health, shouldn’t they?
My son reminded me today—he’s a smart lad, must take after his Dad —that GPs have to deal with all sorts. People who take illegal drugs, abuse steroids, smoke 40+ fags a day, drink heavily etc. And so I really shouldn’t feel bad about admitting to taking thyroid hormone replacement that I’ve sourced privately.
I’ve spent years avoiding doctors as far as possible because my most common experience is having a consultation where they didn’t listen, didn’t offer any suggestions and I simply ended up sitting in my car in the surgery car park afterwards sobbing my heart out that no one wanted to help. Is it any wonder I decided to try to fix something myself?
And I’ve done sooo much reading around. They tell us they’re the medical experts but nearly everything I’ve had go wrong with me I’ve figured out and treated myself. And I’ve watched them fail to diagnose serious disease in far too many of my immediate family. My confidence in their ability to help me was at an all time low when I first sourced NDT off the internet.
Now, all these years later I know that I should have made more of a fuss about getting better care, demanded I was taken seriously, but that was just one more stressor at a time when I already wasn’t coping and I had a job to hold down and a partner who needed me to be well because they weren’t. It was a sticking plaster—but given the last 10 years, it’s been quite a good one.
You have done great. So often we get moments of feeling completely let down. Sounds to me you are still on the right track. Hopefully just a bit of tweaking for you.
Good Luck with Dr's. Speak to boss regarding workload (Don't leave it like I did, which made me ill) stress that you need a jobshare after ending up in A&E, stress related! Otherwise look elsewhere for a part time job! And maybe ask the solicitors for a breakdown of their costs and advise you'll be taking it further due to theur incompetence and costs! There must be some sort of ombudsman or body who can look into them. Whatever happens Good Luck and don't damage your health with it all xx
Sorry to hear of your stressful time lately Jazzw . I have to say that I have not been so good since WP Thyroid went off the market, and have ended up on Roseway compounded NDT. I recently had a cataract operation and because of the NDT had to have an Echocardiogram done before they would operate. All was well and the operation went ahead a couple of months ago. Blood pressure has been up since I had to change NDT and would you believe, NHS do not have a BP med. that does not include /acacia powder in it, so just keeping an eye on it. Tried various other things, but still no change. Do hope you can find an answer to your BP problem, and good luck with your Medication Review with your GP.
just wondering but is there something you ate or drank that could be cause. I had extremely high blood pressure and finished in A&E and it was found that there was licorice in my herbal tea ...
So sorry to read what you've been/going through. Stress and anxiety can be a major cause for what just happened. I know I go on a bit about sex hormones and peri/ menopause but I read about so many women leaving their careers/ jobs because of stress and anxiety brought on by peri/ menopause. I went through hell mmyself and see so many others not realising this is happening to themselves. If you haven't already looked into this it worth just investigating just in case.
Sex hormones and thyroid hormones can play havoc with one another..they did for me and I never realised.
Hrt was life changing for me and testosterone the missing piece.
Thanks Sparkly. I’m nervous of HRT because my mother died from a hormone related cancer. And was diagnosed when she was 3 and a half years older than I am now. So while it would probably help, I’d just be waiting for it to backfire. I know it’s the answer for many and could be for me too—but… well. I’m sure you get it.
My employer did the same to me. Gradually over a period of 9 months, various staff left, and they didnt replace them . So my workload was massively increased....... put your foot down. These companies have a duty of care, and you might like to consider putting in a request for a stress assessment.
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Or advertised for someone to do the part of my job I no longer had time for. Instead… drumroll, I’ve been doing more than a full time job in 24 hours a week since December. Meanwhile, dealing with Dad’s estate has been a nightmare—the solicitors keep making mistake after mistake and it’s costing loads more money than it should. 
For sympathy even? And if you’ve read this essay, thank you. Please wish me luck? xx
New to this fun game!
Recommendations for Good quality vitamins without breaking the bank
Hyperthyroidism and holiday
holidaying in the states
