...especially since seeing the endo last time. It wasn't just the dire warnings that it was my choice whether or not I critically damage myself suppressing my TSH levels, By the way, my last stats were:
serum TSH < 0.05 [0.5 - 5.0 miu/L];
serum free T4 = 11.1 [10 - 18.7 pmol/L];
serum free T3 3.8 [2.5 - 5 pmol/L]
But what has compounded what she said was the way she treated me. From the first time of being so very supportive, over the last four consultations she has become someone who dismissed everything I said, either by ignoring that I had said anything at all and just continuing with her diatribe or blinding me with threats about AF using the "results of research" - of which she mumbled something about there being not much, and what there is is with an elderly cohort.
But her attitude is something I can't quite shake off nearly a week later. Her autocratic and unfeeling manner was like someone's who thought they were dealing with a complete nobody, but on camera; I felt put-down and disparaged - it was classical bullying and it was very accomplished.
I have a few months to find yet another damned endo. What is screwing me up is the damned anxiety - and this when my lovely, lovely OH and I have discovered he's got a dreaded disorder and has to have a serious op, which is "aimed at a cure", as they tell us, but is still going to knock him out for weeks.
To say I am anxious just doesn't quite cut it - not sure how I'm going to cope.
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Schenks
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Schenks, I'm sorry you are having such a bad time at present and I agree when the sensation of anxiety rises it is horrible to experience. I think that when you acknowledge it is anxiety that in itself is a bit helpful rather than being frightened by the sensations and wonder what's happening.
I am sorry your OH has to have a serious op as well, so hope everything goes o.k. in that respect as well. It's strange how incidents come along together.
As for your GP, she has probably been taken to task by others in the surgery who are above her so she is covering herself in case you become worse and the blame is laid at her feet so she is drawing back.
Just try and (despite your symptoms) concentrate on yourself and I hope anxiety goes then you can concentrate on your OH.
Thanks, Shaws, you are so kind. It's the fear of descending into a nightmare, I think. And it's the damned endo who has become the Harpy. the GP is quite willing to help but only if the computer/endo says so!
I think then, that the Endo might have been reprimanded because if you read the guidelines of the BTA, you will see their reasoning which doesn't make sense at all to us who struggle on thyroid hormone replacements.
Yep - I think you've nailed it. However, it would not have hurt to tell me that - and not to have said anything disparaging about the treatment by a doctor who treated hypos with love and care, who died not long ago.
Many have lost the magic 'touch' with patients when we had confidence that whatever we were told, we believed and you knew they would try to get to the bottom and do what was necessary to make us well.
We cannot always get well if they only go by a computer print-out which can be used as an adjunct to meds.
From other posts you have written, you have presented as a cool, intelligent person. I am furious that this ENDO, who was in possession of full health and not feeling shaky, therefore at a huge advantage over you, has succeeded in intimidating you. It is just BTA policy and they have closed ranks. If they were ever to admit they were wrong, think of the outrage and backlash! No, victims must go on suffering. I've read that before 1920, doctors killed more patients than they saved. I can't remember where I read it now. But their habit of causing puperal fever by examining newly delivered mothers without hand-washing, even when coming straight from corpse-dissecting, is surely famous. Pasteur and Joseph Lister were scorned for years when they talked about germs and bacteria causing infections. The Great Thyroid Scandal, to borrow Dr Ps term, is similar.
You have a lot to face and you are a brave, resourceful individual. Try not to take the bullying personally; it is their (cruel and damaging) policy.
Oh, Joey - I'm so grateful to you for what you've said. Just to read that you think I presented as cool and intelligent has reminded me that I am just incredibly shaky right now, you're right. I was somewhat distressed before I went to see this arrogant little person, but her unpleasantness has catalysed such an extreme reaction and I'm finding it hard to manage it all. I really thought I'd found someone to just tell me what the hell to do, because I can't think it through too well right now, and the last-but-one time she made some well-reasoned recommendations, but last week she was simply horrible.
And the way she treated us from the outset had changed - not walking down the corridor to the room with us but scuttling ahead and leaving us trailing ... all the personal niceties were gone and we were spoken to and dispatched so swiftly, it was sugar-coated curtness. She's really wedded to the money - as few minutes as possible for the maximum fee. That makes one feel like nothing more than a cash cow, one to be milked for all its worth for as little effort as possible.
But you're right, you're right - I have to reject this nagging habit of blaming myself - was I too pushy, was I too demanding, was I too questioning ...
God, I hope we don't die out like the poor patients before Pasteur and Lister succeeded - that somehow the scandal breaks and we are permitted to get better, rather than be cash cows for Big Pharma and their medical matadors. I hate doctors right now. It's almost like the Stockholm syndrome with iatrogenic anxiety!
Stockholm syndrome is a good comparison, so is the ending of '1984', ie they want us to end up loving Big Brother. 'There was the Ministry of Truth, which dealt in lies.'
You would be within your rights to complain, but it would only more stress for you, so they win again. Best to put it in a capsule and throw it into the sea. Endos are an old-boy network with great power and their victims are poorly, in no position to fight.
My palpitations stopped when I really finally cut out all caffeinated drinks and I could hardly believe it! I expect you've done this already though; you are no fool.
By my reckoning your FT4 is very low in range & your FT3 is only halfway in range. As all patient experience shows that FT4 needs to be halfway & FT3 in top quarter to third of ranges, I would say you need slightly more, not less.
Thanks, Moley. The night before last I went to bed and got frightened of my pulse which was too fast, so I didn't take the other half grain of the 2 I'm up to, and only took 1/4 grain last night. Yesterday I had the most awful stabbing pains in the middle of my left ribcage towards the back - just suddenly ... stabstabstab ... and stop. Every few minutes, all day long, so the fear has been escalating. They've gone today but my chest, back and neck ache, but I just can't go to the GP - can't ever get to see her anyway, and I am certain I'm now seen as a heartsink and treated accordingly - nothing's wrong other than spondylitis, nothing to find other than the usual changes due to age, go take paracetamol and it's all in your.....
Sorry. Rant cycle over. My pulse has been ranging from sluggish (60 - 64) to fast (80-85) and all stops in between, so I am worried about bl**dy AF and pushing the pulse rate up, so haven't even considered upping the dose from 2 grains. I reckon the anxiety is playing havoc with my thyroxin assimilation and am b****red if I know which way to jump.
Going to take the usual 1/2 grain again this evening and see how I manage.
The anxiety will be driving all of that, yes. 80-85 isn't too fast, a little higher than average, but nothing to worry about. Concentrate on calming the anxiety first, anything else can wait x
I feel so angry for you Schenks. It is unforgivable to treat patients that way - I have had a suppressed thyroid for years and only then became well - TSH 0.01, Ft4 22.02. GP has been trying to reduce it ever since. I always resist by saying I will take full responsibility, in writing if necessary.
'Understanding Thyroid Disorders', written by Dr Toft, is published in association with the BMJ, so your endo might be persuaded to believe it! An extract : "
"Typical results would be a fT of 24 pmol/l or TT4 of 140 nmol/l, and a TSH of 0.2 mU/l. In some patients, a sense of well bring is achieved only when fT4 or TT4 is raised, for example 30 pmol/l or 170 nmol/1 and TSH low or undetectable. In this circumstance, it is essential that the T3 level in the blood is unequivocally normal in order to avoid hyperthyroidism."
Re. feelings of sickening anxiety, I noticed Metformin was mentioned in your previous post and am wondering if your B12 is low? Metformin depletes B12, as do other medications, PPIs etc, and extreme anxiety is one of the symptoms of low B12. It might help to get tested or take a good supplement (e.g. Jarrows 5000 mcg. sublingually) and, just in case, your OH, as he is due to have an operation (nitrous oxide inactivates B12 if already low). You cannot overdose.
Hi, Polaris - thank you for your reply and your information. It gives me a big measure of relief to see your numbers and the quote from Dr Toft, I have to say. So much so, I have sent a request to find how how much it is to see him - I've got six months on this script from the bye-bye endo, and I reckon I will do a bit of self-medicating beyond that to get my OH over the worst as well as getting my own bloods done. S*d them. Then, if we can afford it, we'll have to take this trip to see him in Edinburgh. Oh, boo hoo - I used to live in Scotland - what a terrible shame I'll have the perfect excuse to go back there! (Wish it could be permanent!)
Thanks for the heads-up on B12 - my blood levels are very high (been supplementing for yonks) but didn't know about the anaesthetic effect - will make sure OH starts to supplement with the other stuff he's obediently taking before the op. We got the letter to go see the surgeon today, so I'm sitting here with a big fat glass of wine and s*dd**g-it for the night! Didn't know metformin reduces B12 either, so I'll be watching out for that, too.
Starting to feel mellow - smell of roast chicken and stuffing wafting up the stairs, freshly laundered bed linen on the bed and The Hobbit Part three waiting on the video! Going to have a mellow night!
Poor shanks I really feel for you. It does sound lik your endo has been 'got at' doesn't it. Her changed attitude must feel horrible. I also was just going to say have you had your B12, Vit D ferritin and folate so checked out so that you know all of those are running well? You want to be high up in the ranges.
When I was on B&R and needed more levo I got palpitations and hyper symptoms. First time I thought I was becoming hyper again but someone on here pointed out (correctly) that some hyper symptoms can also be hyper symotoms
Don't know if it could apply or not but I was having awful chest pains - the I was hauled in for my asthma check, given a peak flo machine and told to use my inhaler 'religiously' which I have done. Six weeks or so on and chest pains ( my imaginary heart attack!) have all gone. Think I found the cause of them so my inhaler and I are now best friends.
I know too that my heartbeat can zoom up to 80/90 and even higher - scarily higher - after I have run up stairs or done some housework but it can also be pretty low when resting, I'm sure I read somewhere it isn't so much how high it goes as how long it takes to get back to normal - I could be wrong on that though as I am not medically qualified.
Are you able to get out for a walk? I find walking can be almost like meditation (in fact I did a course in meditation and we did 'walking meditation) so if you are able to go for a walk you could pound out al your worries, especially if the weather is good. There's also good old Dr Bach's Rescue Remedy for anxiety. You could give that a try although I don't know if it interacts with thyroid meds. So you might want to check it out if you decide to guve it a try. I hope you get through this bad spell and things go well for your other half. (((Hugs)))
Thank you for your support - it really is appreciated. It's strange how I don't feel quite so alone with all the replies, even though I can't 'talk' to y'all. Vit D up (supplement at 5000iu per day) as well as B12 (sky high - yonks of supplementation) but not had the iron and folate measured for a while - have to wait a few weeks until we have the funds to go privately because I doubt endo-thing will request them from GP and GP won't bother her arse without the endo-thing say-so. got us all stitched-up, haven't they? And all we are are cash-cows for Big Pharma - that's what all this boils down to in my reckoning.
I never gave the asthma thing a thought - I've got a blasted inhaler (not exactly asthmatic, apparently, but have a problem when anxious! how the hell did I forget that?) and rarely use it. THAT'S going to change from now on. I'm going to keep it to hand - thanks you.
Ah - now you come to mention it, I recall seeing that it's how long it takes for the heart rate to come down - totally forgot that one in my panic. Actually, beneath the pi*sedness, I think i'm calming down a bit. Weepy, but calmer! And I've just had a great big puff (sadly, on the inhaler, but still a bit lightheaded from all the oxygen it's allowed! Ooh, I am a bit pickled!! )
And funny you mention a walk - that's why my OH insisted i came out with him to give the dogs a walk today and then go and have a "coffee and a bun" as he calls it - and it has really helped - you're dead right. And after reading your thingummy, I've got out a meditation CD. Fight this thing. But a couple too many fronts at the mo.
Thanks for your good wishes for OH. We got the letter today - he's going to see Professor Clarke in Manchester, don't you know! But - sod's law, we have to cancel a week in Devon because it clashes with a few day's hol we've had booked for 4 months! Hey ho! It never rains ...
Schenks darling may I make a few suggestions, this last bit of bullying has hooked your sub-conscious back into the previous work bullying you had to suffer. Instead of getting a diagnosis of CFS you should have had a diagnosis of Post Traumatic Stress (PSTD). With PSTD your body systems shut down you are in survival mode.
Take a deep breath and tell your nervous system to calm down (its churning up too much adrenalin) walk free hunny bun tell yourself you are no longer living in the past, let it all go by forgiving everyone (including this awful doctor), you say "I forgive (say name) and I am letting you go for all the things you have done to me, not because you deserve it, but because I am no longer going to carry your shite around with me, I give it all back to you, it says nothing about me but everything about you, I am no longer the victim, I grow strong"
Go through everyone who has harmed you sweetness and forgive them all saying the above, and last but not least forgive yourself, you are so worth it! :0) xX
p.s. I am a post traumatic psychotherapist I knows ya know, winky! winky! :0)
Katherine, sweetie, I so recognise the kindly intentions behind your posting here, but out psychotherapeutic approaches, whilst diagnostically close, are so at variance.
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What Happens to Me Every Morning
Advice on TSH please 
Up & Down! Up and Down!
TSH going up, normal T3
