I was due to have a Trapeziotomy on left hand tomorrow. (Both hands need to be done due to bone on bone arthritis but have to have 6 month recovery inbetween)With less than 16 hours notice it has been cancelled as my pre operative blood tests show a supressed TSH and so they cancelled it.
But I specifically told the pre assessment health care assistant in advance - to please call my endocrinologist as my bloods are going to show a supressed TSH, they have done for 15 years. It is normal for me but you are not going to like this. My endocrinologist will explain how this drug will always supress the TSH.
Well the HCA doing the pre assement did not do this, and now they cancelled waiting to contact my NHS endo who is already battling with me as after a recent experiment to drop from 60mcgs T3 monotherapy to 50mcgs made me very ill again.
The endo even said to me when I told him surgery was coming up the hand hospital will not like me being on such a huge dose of T3.
So now I am still recovering with dropping dose ( ended up again with a severe chest infection that only went last week, but now left with 2 extremely painful useless hands with yet another battle with endo that goes on and on.
Has anyone on T3 only had surgery here?
Do I pick being ill with hands or having acceptable blood tests. I hate this condition and hate the fact I even have to be on T3 which I would much rather not as life would be so much easier.
This was avoidable, what a waste of time and resources.
I feel very low and need to get back to work. Can anyone tell me they have had non emergency surgery on this medication. With thanks
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Freewoman1997
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Anaesthetists are usually far more knowledgable than most doctors about TSH and tend to understand how it works and what the blood tests mean—you don’t need me to tell you this is a non-issue. I can’t believe we’ve reached a situation where a decision’s been put in an HCA’s hands and the reaction is to contact your endo—and not an anaesthetist.
Well, I *can* believe it. But this is really rubbish. I think I’d complain in the first instance—to the hand surgeon team who’ve decided this is the process they should follow. It’s bonkers.
I agree, anaesthetist husband says this would be a complete non-issue as long as T3 looks ok (ie patient not very hypo or hyper). My TSH has been suppressed for decades so I would be in same boat (and I’m not on T3). What is your T3 at moment?
I definitely think you should complain - if it was the HCA who cancelled due to some protocol in place (not fully clear if it was their decision ) then the hospital need to review this.
Edited to add, sorry, should have read your post properly. 60mcg on liothyronine mono therapy is categorically NOT a huge dose, merely a full replacement dosage.
I’m so sorry. The level of ignorance we’re dealing with is insane—and doesn’t look set to get any better any time soon.
I think though maybe your next move is to see if you can speak to the anaesthetist who would be there for your op. Like I said, they very often have a better understanding of what is risky.
I’ve had 5 surgeries, including 2 trapeziectomies, with suppressed TSH - it has never been an issue. I’ve had both GA, and regional nerve blocks. I take T4 and T3
Just wanted to say how sorry I am for the cancellation, delay and stress. I wish that more peopleunderstood about suppressed TSH. It just adds stressto all our lives that we have this uncertainty around T3 , staying on people's good sideso they keep prescribing,. CertainlyI think writing and pointing out that this had all been explained beforehand would be worth having in your notes for future reference. Good luck
Thank you all for the replies and insight.I have woken up very angry because I know my endo is going to use this as leverage to get me on combo therapy ( which I tried years ago and became very ill) or to lower dose which he also nags me about.
I have a good mind to drop dose for the surgery then put it back up afterwards repeating this when other hand needs doing.
Its all so reckless and unfair. I am very angry that it was not followed up as I requested having told them the tests would be to them ' not right'.
Again its a postcode lottery of endos and scaremongering.
Particularly as I have woken up extremely anxious that maybe I should not have an op as I may not make it through the sugery.
Yep I have been scaremongered to the point now where every twinge is my 'overmedication' and I am going to have a stroke or heart attack. I have been brainwashed by these experts havent I.
I just feel like going back on levo now I just dont have the fight in me any more after 15 years.
I feel so defeated and which ever route I choose I am going to be ill and or suffer.
So sorry if I sound self pitying its just been a hard few days...
Last year I was down for an Ear Tumour operation. The Anaesthetist cancelled it after looking at my blood test results. It was the FT3 that was still too low for the operation not the TSH which has been supressed for years. I have no thyroid and my professor surgeon is happy with the suppressed TSH. I live in France so different thoughts.
Sorry that your hands haven't been sorted out yet.
That sounds tough Brightness.My levels are always all over the place. My last bloods with endo ( approx 6 weeks ago) he said my T3 was too high at 12?
That I am clearly hyper and needed to reduce.
The difficulty being that anything less thsn 60mcgs my temperature drops to 35.9 I pick up a virus and end up not being able to fight it off.
I have had serious incidents when this has occured ending up in hospital in a crital way.
If anything I feel better on 75mcgs but 'to keep people slightly happier agree on 60mcgs' even though constantly told it will cause me serious harm/ gambling with my health/ etc
I have had a lot of operations over the years and have been on a daily dose of 60mcg of lio. When I had my op for Carpal Tunnel, the nurse questioned my TSH. She spoke to my oncologist who explained the readings and gave the go ahead to operate.
I can understand your frustrations, especially when you need to wait so long to get appointments/operations.
Almost certainly! But critical thinking and medical curiousity doesnt occur on this medication. Its another excuse to take you off it.I could have not dosed and used those tactics. But I am genuinely scared after so many years of being told this drug will kill me, I wanted to be safe and for there to be transparency.
Just a thought regarding your endo's concern about your T3 dose. NICE gives the following advice,
'Initially 10–20 micrograms daily; increased to 60 micrograms daily in 2–3 divided doses, dose should be increased gradually, smaller initial doses given for the elderly.'
I suggest you contact your hospital PALS Patient Advice and Liaison Service. If you GOOGLE PALS there is an NHS web page that explains what PALS can do. My wife knows someone whose appointment got lost in their hospital system. PALS were able to quickly sort it out with an instant appointment date offered within a few days.
Thank you for this! I will call him after hospital been in touch. His arguement is my T3 F3? Is 12 and way to high.But this may be as 6 weeks ago when blood taken I had had 2 doses already that day. The second dose 1 hour before bloods. Of course it will be high.
I think I am going to request all of my blood test going back 16 years.
No medical professional has ever explained to me or tested iron and vitamins.
Just labelled a difficult patient with a spiky thyroid problem.
Surgery aside I need to get this issue sorted once and for all.
I am fed up with playing the game to stay on this, and now developing anxiety that this drug will kill me anyway due to constant scaremongering.
How do they perform surgery on people with asthma, heart conditions severe obesity??
I may get in touch with PALS too. I will find the fight in me again hopefully. But now sitting here in severe pain with a cancelled operation, with no idea if it can ever take place feel beaten.Ironically I can get my bloods to look perfect by going on levo but will be really ill and be 2 stone heavier.
Recent drop to 50mcgs I put on 6 pound in 18 days. Surely yo yo weight is just as undesirable. I am 2 stone overweight as it is due to having limited use of hands and being in pain.
What an awful and stressful situation to find yourself in, I’m very sorry to hear this. I do know A LOT of people have to play the blood test/T3 game to simply retain the doses that make them feel “well”. So some even leave more than 24h without any T3 to just ensure the TSH isn’t suppressed and their numbers look “normal”. Isn’t it a shame that medical knowledge seems to have gone backwards and that it’s all about the numbers rather than symptoms and how we feel. Good luck in this process which has come about unnecessarily in my view.
I had a bowel op in 2012 while on T3 mono therapy. As soon as the surgeon started to operate, my body went into full scale stress reaction, kidneys packed up, lungs filled with fluid and I had a fit.
Afterwards, the medics said it was because I’d been taking herbal medicine prior to the op and bought a pharmacist in to grill me the day after to try and pin it on the herbs. He couldn’t work out a mechanism for the herbs to have done that, so they all agreed it was the T3.
T3 might have had something to do with it as when I get anxious I get transient hyper-thyroid symptoms, shaking, palpitations, sweating etc.
I needed a second op some weeks later and they refused to do it unless I went back on to T4. This I duly did. I ran down my system by switching from T3 to T4 over a month. I felt run down after just two weeks, but carried on for another two weeks until I was fully back on T4.
I managed to get the op done with no pyrotechnics, and started taking T3 again the very next day. All-in-all I had to take T4 for a month before the op which ran my thyroid function right down, but I quickly got it back up in the weeks after once T3 was resumed.
I don’t know if this helps you any, as your TSH would probably still be suppressed even if you switched temporarily to T4, although T4 levels would probably fall within their ‘ideal’ range. Might give you some leverage?
Best of luck with all this, We shouldn’t have to be having these battles.
Yes absolutely! The lack of medical curiousity to get people truly well, to understand, research and gather patient experiences is medieval.Patch you up with a pill and away you go.
With another 15 working years ahead of me with deteriating health, I just feel so afraid.
Andie that is awful! Its stories like yours that are feeding my anxiety. My hand op is a 90 min procedure that can be done without GA ( nerve block etc)How much T3 were you on?
I am intetested in your dosing while tapering on/ off.
My concern if I switch to T4 it could take months of feeling ill but still have a spiky profile anyway? Like I did when I was on T4 originally then combo before monotherapy.
Its time off work that I cant afford as I on ssp but that runs out in July.
PS I didn't mean to suggest that you would have the same kind of reaction to surgery that I had. My op was a major bowel resection and I had an extreme stress reaction. I do have PTSD. My system reacts in an extreme way to stress.
I am so sorry to hear you react so badly to stressors. It sounds like you had a good team guiding you through the whole thing with a fab endo. Glad you doing well now.
Sorry if my story has caused you anxiety. I was hoping my experience might give you an other option.
I was taking 60mcgs T3 and also (I think) a quarter grain Armour Thyroid. I was over-replaced at that time and later stopped the Armour. I now take just the 60 mcgs T3 and feel ok. I do have anxiety issues and find that stress can seriously jack my thyroid function up.
I didn't realise your op was by nerve block, I presumed it was a GA. Can't understand what their issues are?
Unfortunately I can't find the dosing regime for weaning off T3 onto T4. It was given to me by my endocrinologist at that time - a wonderful open-minded woman. If I ever find it, I'll send it on to you !
I would say I felt off par for about a month in total as it took 2 weeks before the lack of T3 kicked in, and then it took another 2 weeks after the op to start feeling human again once restarting the T3. Luckily I wasn't working at the time but recon I could have if I'd needed to. I would have felt awful, but then I'd spent years previously, working while feeling awful on T4.
The thing is, we're all different, coming at this from different physiological needs and experiences. Maybe this option wouldn't be right for you.
I really hope you get something sorted. This seems such an over the top response for what sounds like a pretty straight-forward operation.
My t3 is always kept down to around 0.03 and has been for manyeyears. I am surprised by the amount of med personnel that know nothing about thyroid medication and problems.
I keep a list of do’s and don’t ready for the uninitiated .
@Andie no I am grateful you sharing and it has made me think I could try that! But it goes to show how anxious I have become over 15 years of extreme scaremongering.It sounds doable for me as off work awaiting surgery anyway. Doubt they would let me go back on T3 only after that as is their ultimate goal.
Would have to sort of self isolate as being undermedicated drops my temperature and could end up quite ill again. But could self source after that.
At least could be in control rather than begging NHS to keep me well.
Hospital are still expecting me in. They never told them.
Had a manager apologising how bad its been. Anaestitist cancelled op.
I said would have been good if he had called and explained and told me course of action. She agreed.
Have demanded blood results to see how 'bad' they are.
I had to call them back. Endo not even been called as its all been so badly communicated.
No one can even use my op slot. What an utter waste of money having all of those highly paid professionals on standby, when a phone call from an HCA would have prevented that.
Had a call from my endo. He was great and told me he would write to surgeon to explain there is no problem with blood tests it is how the medication works. Everything is coming in range. The increase in F3 was the bloods taken after 2 doses, as people here have suggested.So it can now go ahead, albiet when an appointment comes up.
Still very cross the HCA did not pass on to endocrinoligist in time to get it done today.
For those in the same boat, in future if surgery is due, ensure the team can get advice from Endo in good time.
Hospital were still expecting me so such a waste someone else could not use the slot.
Had yet another 2 calls from hospital. Now saying even if endocrinologist says its not a problem to go ahead, the final decision lies with aenathitist and surgeon 🙄Also trying to project onto me and that the HCA was doing her best. I held firm and told them to not put it back on me, I was very explicit and told the HCA someone has to get in touch with endo urgently to explain and get advice.
I didnt want anyone to get in bother over this but how dare they gloss over it as a non issue.
I requested a full statement outlining what has occurred and what they will do to ensure thus does not happen to anyone else.
Well done. Definitely the way to go—to get them to put it in writing so that you have at least a hope of defeating their arguments.
And actually, I really wouldn’t be too concerned about someone “getting into bother” about this. They’re really let you down. This is simply not good enough.
I'm so sorry to hear this. I use NDT and my TSH suppressed as normal when on T3 meds or NDT. I had total hysterectomy couple years ago and no mention of suppresed TSH. I just didnt take my meds morning of operation. Full anaesthetic and no problem.
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