Stating the obvious (and sorry that this question comes from a point of ignorance), from what I understand - and despite what the doctors say - the proportion of people who don't feel "right" or don't feel well following thyroidectomy or RAI looks to be fairly high.
Is there any distinction between satisfaction & "wellness" rates of Graves sufferers who have undergone TT / RAI and those with other conditions? Is any one group happier or less happy with the results than another, or is dissatisfaction relatively high for all groups?
(No reason to think there would be a difference, but just curious!)
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Midwinter
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Yes - I think it would be fairer to explain that as it's an artificial solution, unless you're very lucky it will never be a cure. The nearest I got to that was with one rather kind Endo (someone different almost every time) who did concede that medicine does not have a "perfect solution".
So it is - or should be - a matter of weighing up the best course of action for this patient, at this point in time; rather than relentlessly pushing them all down the same path within a predetermined timeframe.
I am definitely an unhappy TT victim and I have just been asked by an endo what expectations I was given by medics before my TT. I said what we are all told, " Take a pill every day and that's it" He looked surprised and then told me he could not wave a magic wand and I should not expect ever to feel normal.
Yes, that is what he said and he is a Professor of Endo at a leading London hospital. Worse, he wrote to me, copy to my GP, so at my last visit to the practice, the doctor I saw told me " no doctor can help you" ( with my constant aches and muscle pains). Basically I have been written off by my practice.
I think its a very interesting question! But how someone feels post TT is not going to be related to what the original cause for the TT was, because we are all a blank canvas afterwards and on a level playing field regarding treatment.
The interesting question therefore, is what proportion of people post TT feel well?? Maybe there is a skewed representation of people experiencing problems post TT on sites like this ( I do know a lady at work who had a TT and is 'fine' on Levo) but has anyone in the medical community done statistical post TT research? I suspect not, simply because I know that a lot of TT patients are discharged from endo care with little or no follow up.
I would love to find out what proportion of people post TT feel fine? The reason is that I think that we are a blank canvas as regards thyroid replacement and therefore what is required for us TT's to feel well should be an indicator in the medical profession as to treatment generally for all other hypo thyroid patients. I am thinking of starting a UK TT Facebook Group as a method of collecting data and providing advice.
In the case of Graves' disease, the TT does not 'cure' the Graves'. The antibodies DO reduce in some individuals, but in others that is not the case. That is why they rarely do RAI for Graves', because it can actually cause the antibodies to rise and attack the eyes (Graves' Eye disease - or Thyroid Eye Disease, which is a misnomer)
Graves can also recur many years later and attack the eyes.
A further complication with Graves' is that the particular antibodies in Graves' have an effect on the pituitary, reducing or suppressing the TSH. Several studies have demonstrated this.
From the Journal of Endocrinology and Metabolism, Brocken, Sheenhart, Wiersinger and Prummel:
This will lead to a high likelihood of under-treatment with Levo because they continue to insist on using the TSH to titrate the dosage, rather than the T4 and T3 levels.
There are other possible problems which would certainly apply whatever the reason. It is a strong possibility that T4-only therapy will, over time, lead to many and various deficiencies, in particular adrenal exhaustion because T3 clearly has an important function in the total picture, since the healthy thyroid does produce T3 as well as T4, and it must do so for a reason, which would be a good subject for a study. If the human body really could get all the T3 it needs through T4-T3 conversion, why would the thyroid secrete T3 as well as T4?
Another recent study has also suggested that the lower the TSH, the less efficient is the T4-T3 conversion. I can't actually find that study as I had a HDD crash and am having some trouble finding it. Perhaps helvella might come up with that one!
As usual, I can't remember where I read this, but I seem to remember seeing something indicating that the proportion of unhappy patients post TT/RAI was quite high - but I don't think there was any indication of the reason for needing it.
Using TSH as an indicator for me is definitely a waste of time; I had a pituitary tumour way back in the 70s and part of the cure meant that healthy pituitary tissue was taken too. My anterior pit hormones are gradually going out of the window - last TSH came back at 0.18. It seems almost impossible to find an endo who is a "general" endocrinologist and can juggle both pituitary and thyroid issues. When I was diagnosed with Graves in 1991 my then-endo said it was unusual to have two distinct endo failures, and since then I've only had one consultant who really listened and gave me choice and input on my treatment. I've just put myself, with GPs blessing,back on T3,as I weaned myself off it to please my current endo. Its withdrawal left me back in the exhausted, depressed and temperature intolerance of hypothyroidism again. No way was I content to live like that. We'd put my returning hypo symptoms down to me recovering from a brain haemorrhage/stroke last March,but recovery shouldn't take so long with no progress. I was incredibly lucky to live,let alone practically unscathed physically,but there's not much point in carrying on with no quality of life,so it's back to T3 and risk the wrath from the hospital! What's the worst she can do? My GP backs me so...
I first became over active in 2004 treated with Carbo then after a couple of months went back to normal so stopped the Carbo. I was okay for 4 years (thyroid normal) on no medication then I became underactive in 2008 took Erfa & T3 which I purchased abroad, I was Hypo for nearly 4 years then in late 2011 I was diagnosed with graves disease I woke up one morning & my eye had swollen was very sore & I couldn't stand the light hands shaking uncontrollably etc & was referred to a consultant who tried everything to control my thyroid I was on a very high dose of Carbo, they tried block & replace all to no avail & they decided the only way forward was to have a total thyroidectomy. My consultant said it was very unusual for someone to go from being Hypo to Hyper and in my case it depended on which receptors were picking up the signals. It took ages for them to get my thyroid under control so I could have my op & said the only way forward for me was a TT as I could go hypo at any time & therefor medication will not work. I was terrified of having the op & becoming Hypo once again with all that entailed & had a stroke the week before it was due so it was cancelled & in May 2013, I had my op & have not looked back since, my weight has remained stable at 8st 6lbs. I did stipulate before op that I would not take Levo as it did not work for me & that I would prefer Efra (NDT) or something similar plus T3, he said he could not get the PCT to authorise the NDT but could prescribe Liothyronine (T3) he said to give levo another go plus the T3 which is working well for me, fingers crossed.
I never really gave Levo a chance as when first dx with Hypo the doctors I used to be under put me on 50mcg of Levo & left me on the dose with no follow up blood tests, I was so ill & researched on the internet where I found a brilliant website that helped me & I started self medicating, purchasing NDT from Canada & T3 from Mexico, I realised what poor treatment I had been receiving & changed doctors, I made the new doctors aware before I joined the practice that I was self medicating & they where okay with it whereas my old practice did not like it one bit & were quite nasty with me, then hubby was made redundant & paying for my meds became difficult so I asked if I could be prescribed my meds on NHS they couldn't authorise it but referred me to an endo that could, he checked my bloods & said they were brilliant & agreed to T3 being prescribed on NHS then 12 months later all hell broke loose as I was taking my hypo meds & not realised I had gone Hyper. I also told my endo which by the way was the same one I had seen earlier about getting my meds on NHS, so he was aware of my situation that I wasn't converting T4 properly etc & I told him that when my GP's take over my care that I wanted my well being take into account & not just the blood tests, he then wrote a letter to my GP's stating this, which was a good thing as one of my tests came back with a suppressed TSH & the doctor was insisting I drop my dosage, so I pointed out there is a letter from my endo on file & as I am feeling better than I have done in years I didn't feel a drop in dosage was needed, I am so glad now that I asked the endo to send the letter.. I currently take 75mcg of Levothyroxine & 20mcg of Liothyronine (T3)
I didn't realise that a lot of people are not doing well after their TT and few are. I hope this is going to continue for me. Did anyone feel great after their TT and then go downhill?
Also I didn't realise that my eyes could still be a problem even after the TT and that is worrying as I have started having an aversion to the light again but put it down to having a nasty head cold & sinusitis and my eye is aching but not protruding which again was put down to the head cold, it did go down after the op but still looks slightly different to my other, I still have a little double vision as well, I should mention that only my left eye protruded, my right eye looked normal.
Hilary, I strongly advise you to go for an eye test and tell the optician. I say this because when I told my GP that I was having eye troubles he just basically ignored me. I went to an optician for a standard eye test as I'm over 60, and she referred me within two weeks to an opthalmologist who confirmed TED. Don't hang about, it can ultimately lead to blindness if untreated - it may just need monitoring. I had high Graves' antibodies confirmed this week - my GP didn't even know they existed, he informed me I was talking nonsense - Graves' is just an old-fashioned term for overactive thyroid and once it's been removed the Graves' has gone. NO, dear doctor. Wrong AGAIN!
Thanks! marram I will make an appointment, I'm 63 years young lol.. I was given the impression beforehand that everything would be okay after the TT and once I had had the op my eyes weren't even mentioned although I did see the ophthalmologist after the TT but this was a follow up appointment made before my op & he said everything looks okay & will see me again in a year. No one mentioned that I could still have problems with my eyes even after, I am so annoyed, I have had to fight the establishment for my health which is so wrong, they should work with us not against us.
My last doctors which were a waste of space were giving me grief about self medicating & I said why would I be paying£180.00 for medication if the Synthetic Levothyroxine which I can get free on the NHS was working for me the answer is it doesn't work for me & thousands of other people, just one of the many arguments I had before I left.
Thanks again marram for the advice, I thought it strange that my cold was mimicking my TED symptoms xx
Hi Townplanner (and Clutter), I agree with what you say about there likely being a skewed representation of people with problems post TT on a site like this. I had a TT 12 years ago: I had a goitre which had grown over a period of 7 years and then gave me problems with swallowing and breathing. I never was given any indication of why I had a goitre in the first place and was always told blood tests showed I was OK. So, as you say, post-TT I was discharged to GP care, put on 100mcg thyroxine with annual blood tests and I was fine on that for many years. Less than 18 months ago I became overmedicated on that dose and have spent a lot of time since then juggling to get a dose regime where I don't head for under- or over-medication. But it was only about 6 months ago that I found this forum, probably because I had no need before then. So, yes, we have no idea of how many happy post-TT people there are out there (I was one of them) and it is likely that people come here when problems arise (I am one of them!). I feel I am very fortunate compared to many other contributors to this forum and don't post much, but I do benefit from all the various contributions people make.
Agreed, any "sufferers'" forum is going to be skewed towards those with problems, although I do think consultants ought to involve themselves more with these forums so as to be aware of what the patients whose progress the are so satisfied with, go through. I doubt a survey of social media is even accepted in research.
I'm comforted a bit by being reminded that some people are happy with the result; not, however, by other sufferers' breathtakingly poor experiences with doctors. This is really, what's bothering me: things have not gone to plan with my treatment so far, and when they couldn't fix it they started to blame me, which has been hugely distressing at a time when I was at my lowest. I can't see that their attitude will be different if things aren't good after TT. They've said that I may well have eye disease and the other stuff going on afterwards, and given that compared to this time last year, I don't actually feel too bad at the moment, I'm tempted to leave things a while. In all that year, they were insisting that I was "bang in the middle of normal" - but I absolutely did not FEEL normal so either their way of measuring "normal" is wrong, or there's a very wide variation in what's comfortable for the patient. I have long had a feeling that I need to be a little on the higher side of "normal" to feel OK.
Tbh with me hypo us worse it's a never ending slowly been tortured daily road l felt better before op with all horrible full on hyper stuff.. This side of the road just goes on and on and on!
I can so empathise with you. I knew first hand what to expect with being hypo & not being able to afford to buy NDT was driving me to despair I did not want the TT I was terrified of what was to come on Levo which did not work for me as my body was not converting the T4 to T3 even my hubby said I took it to extreme having a stroke so I didn't have to have the op. I honestly believe it is the T3 that is helping me feel well after the TT xx
I like your expression this side of the road just goes on & on 'BRILLIANT ANALOGY'.
Yep, that's my concern - I've never been able to try block & replace as they couldn't get it low enough, so I've no indication of how I might feel after TT, and the thought that it's Forever is really scary : )
To tell the truth, If you had gone into thyroid storm you would not be saying that hyper is not so bad. I went completely out of my mind and was hours away from death. I was having full-on hallucinations and I had to have intravenous fluids, propanolol, carbimazole, ice packs, and I lost three days of my life completely.
It's true when l thought bout it as I was writing it lol it does! X
I am really sorry for you. You pinned so much hope on this Endo and you have felt rotten for ages. I suppose because he has put his "knowledgeable" views into print this has scuppered any chances of seeing anyone else.
My husband knows someone that sees an Endo down your neck of the woods. This chap is a Professor of Science at Oxford University and he is a businessman. He is ruthless and he does not suffer fools. He has not had a TT but he is on meds for his thyroid. He could not believe the problems I had and told me i should visit his bloke. will get his name and find out what I can about him.
Hi deniD. ? Iv'e had the blue light experience too 2yrs ago. Pulse 180 and was unable to breathe or move. Was rushed to A/E,, put on heart monitor. I told the Dr that I had graves and bloods taken which included TFT. My hands had started to turn bright red about 2 weeks prior. About 2 hrs later I was told that I was being over replaced and to reduce dosage to 75mcgms. Went back to my gp who told me that was RUBBISH and to stay on 100mcgms. By now im feeling like shite, don't know which way to turn as by now, gp is telling me its all anxiety/depression ( that was an accurate diagnosis by now lol). I then asked Gp to refer me privately to endo ( thats another story for another day!!!. I eventually get my blood results from past 3 months re-checked and ......hey presto........hyper!!! gp knew all along and I was made to suffer, but for what I asked myself.??? My life in their hands. I have now become allergic to Drs!!!!! and thats really weird as I am a trained nurse!!!!! Has anyone got any ideas about the reasoning behind my experience????
Hi midwinter. Ive never seen any research papers that has studied your question but I do know that very little research is done within thyroid disease. The Cinderella of research funding compared to the more prevalent illnesses. Such a shame do you agree?
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