I have been diagnosed severe Graves with high antibodies for about 8 years and suffered a number of relapses where usually end up in A&E.
Due to reading a lot on this forum and other websites I have refused RAI treatment due to the often poor outcomes and don’t really want surgery either as read about complications and worry, the same as for RAI, that treatment after with Levo could be inadequate with then no further help from NHS. I have no money to fund my own treatment as health means I can't work. The poor treatment I have already had from NHS, which I won’t go into here as I could go on for a month, gives me a huge lack of trust in them. So I have remained on AT drugs.
But what I will say is that I had another relapse early in year and in A&E and they put me on 40mg Carbimazole and then between the hospital (endocrinology) and GP, whoever is responsible - they blame each other, I was not monitored for a number of months and had no blood tests. I then became ill and after complaining, when my bloods got done eventually, I was then severely hypo and had caused my neutrophils to be abnormally low - not much over 1. So then I was put on Block and Replace in June (40mg carbimazole/100mcg levo) which they said would stabilise me.
My latest bloods in October show: T3 5.4 pmol/L (3.8 - 6) and T4 11 (7.8 - 21) which are back in range but my TSH was still low at 0.09 mU/L (0.35 - 4.7)
But in July these were given as T3 6.5 and TSH <0.02 but without lab ranges but assume same as ones above but they never did my T4 for some reason. My Tr AB was 7.3 (down from 7.9) but told me should be not more than 1.8 and is why I struggle to get remission and can go hyper very quickly. Probably due to the problems caused to my blood count they also did other things at these bloods and showed my phosphates were low at 0.69. How low this is I’m not sure as no reference ranges given to me but read online they should be around 0.9 - 1.5 mmol/L.
The problem is I now only get to see consultant for about 20 - 30 minutes once a year and so don't get much chance to discuss issues/problems. I think they see me as a problem with refusing RAI treatment/surgery and don’t want the inconvenience of anybody with issues - they want all to accept treatment and then be signed off back to GP for very little help there with anything in my experience. I think I was put on B&R as it doesn’t involve much monitoring, unlike with carbimazole alone, as they said the carbimazole will block all normal production and will simply be replaced with the levo so it's no bother to them (it's just set it and forget it) but I end up taking meds I don’t need (levo - Teva brand) and seemingly feeling worse for it than I did just on Carbimazole.
As I complained to consultant about my roller coaster symptoms (hyper/hypo) with lack of monitoring/bloods, I have been allowed to get them 3 monthly from July. I have an endo nurse that rings me with blood results but found her not helpful and only tells me my results over phone and doesn’t want to deal with, or have an answer for, much else. When I asked why my T4 not done in July she didn’t know, didn’t bother to find out and just said “they’re gone now - pointless talking about them.” I also asked why on block/replace would I go from severely underactive in June to a bit overactive in July (according to T3 only) but TSH very low on all blood results including my latest ones. She said don’t worry about it the T3/T4 are normal but I read a TSH that is not within range is very bad for health with a greater mortality risk and so should be kept within ref range. I asked about phosphates being low and that nobody had discussed it with me from July and she just said “they can sometimes be low” and when I said online it says it is not usual for these to be low as most people get from their diet quite easily and says it can often be due to a medical problem, she just said “speak to your GP” and “it is not to do with us.” When I said consultant had said I would get my bloods done every 3 months, she also said that won’t last for very long and then would revert back to less. Bearing in mind I only see the consultant for a very short time once a year, I also asked how I could speak to anyone about any issues and asked if I could email or write to consultant or anyone else but she said no not really, they wouldn’t have time. I noticed she just talked over me most of the time and didn't want to listen and this frustrated me. I have had this particular nurse in the past and she was the same then and had requested having another one by email well before the telephone appointment but then the same one rang again!
But I’m often still not feeling well. I still feel tired/weak muscles/sleep problems. Also when I have a relapse (hyper) my heart is very uncontrollably fast, sometimes chest pain and I am very breathless and sweat buckets and am put on beta blocker but when more under control, like I am supposed to be now, I am not taking them and when resting my heart rate can often be in low 50’s when I understand it should be around 60 -70 odd BPM or more for someone who is not extremely fit, which I am not (and not that young either). However when I do any exertion like going upstairs or carrying something, it spikes up very quickly and makes me quite breathless so that sometimes I have to stop. It also sometimes can spike after a meal and I don’t mean just like the usual slightly increased heart rate due to digestion but an uncomfortable and quite high rate, sometimes with palpitations and heart pounding. This didn’t start that long ago and wondered if this could be due to block/replace, the Graves itself or because my TSH is so low - as I read a TSH outside of ref range can cause heart issues/problems.
Also it is often stated on this forum that you are entitled to a full printed copy of your lab blood results with ref ranges, yet this endo nurse said they cannot send these out as they wouldn't have time and can only give them verbally over the phone. She said “what are you worried about I won’t make a mistake.” I stated what I had read and that I am entitled to them but doesn't make any difference. I can't get them via my GP online as my bloods are done at the hospital. Like you suggest on this site, I did want to keep printed lab copies myself. I even contacted “Patients Know Best” portal where NHS patients can get letters/appointments/test results through an online portal but they said my hospital trust only sends out appointment letters this way as it saves them cost but does not operate it for patient results although they said some trusts do this. Sounds about right. My trust only operates things that benefit them and not for patients at all which is just typical really. Also could anyone tell me if I am legally entitled, under any law or regulation like GDPR/Freedom of Information/SAR etc. to have printed copies of my full lab blood test results because, if so, I will complain to PALS or the Trust but I don’t want to do this if they are going to say I am only entitled to verbal results.
The NHS are no help at all really and in the meantime your health just goes down the drain. I used to be able to work until a couple of years ago but not now and the govt. wonders why so many are not working - it would help if we had a proper efficient healthcare system then some of us might be able to again.
If anybody can tell me anything or had similar issues, I would appreciate any advice as I am at a loss as to what to do.
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I never felt well on carbimazole and the endocrinologist team where I lived at that point were not very interested in getting me well. When I moved to a different area things were slightly better but the new endo did not believe in long term carbimazole.Because I never felt well and because it would have been difficult doctorwise to stay on carbimazole I opted for RAI
It hasn't been an easy journey getting my hypo hormones sorted out but it would have been an equally hard journey to stay hyper.
Thanks for your reply. I did feel okay on Carbimazole alone when stabilised after 2 to 3 months but not on block/replace so do not know if that is due to the Levo or having combination of both (or brand of levo even which is Teva?) So that is one reason why I am scared of having RAI - that the levo doesn't work and I then can't get anything else.
I'm glad RAI worked for you (and it is the easiest treatment and the one you would naturally choose rather than risks of surgery) but many on here say they wished they never had it as had many health issues/ruined their life etc. so it does put you off. Also my endo said before that they have noticed that generally people do less well than with surgery or staying on AT drugs.
I agree with you though that it is no life going hyper all the time either - as when off medication (which is usually not for long for me nowadays) always worried about the next relapse, and they are getting worse each time and don't know if I will even get through them. I feel I have to be near a main hospital with A&E as it is that severe so I can't go away or even have a break - not had any for 6 years now because of it.
Do you mind me asking how long was it since you had RAI and are you stabilised now just on levo or do you need to take other T3 meds? Are you quite well now - I assume from what you say that it is better for you than when hyper. I have experienced both now and hyper feels deadly at worst but hypo is definitely no fun either - felt very low/tired/fatigued and not able to function but not like I might die as with the Graves. It's such a minefield isn't it.
I hope you continue to do well on your treatment journey as unfortunately it is a lifelong journey for us all we have to navigate. I think just knowing that induces stress in me and many people, and how you just miss being normal and well. It's so easy to take health for granted.
Oh it was quite a journey. After RAI my endo forgot to monitor me and by the time they did I was very very hypo.I spent 4 years on too low a dose of levo. Endo was lovely but not effective but I didn't realise this at the time.
Then I decided to cut back on the levo as I didn't think I felt well on it. That made me very ill. My fault sort of.
Eventually got prescribed t3 liothyronine. Again same lovely endo but hadn't a clue. So it took a while to work out my doses. Three years on and things are still improving.
I am very sorry to hear about your bad experience,but all I can say is that my experience has not been much better.I was diagnosed with graves in 2018.I have been on carbimazole only,then block and replace.Yo-yoing up and down,appointments too far apart,only having telephone consultations even before covid.I had a total thyroidectomy June 2023 and was doing OK on thyroxine only but for some reason in January this year my TSH was very high and I am not converting very well.I am managing to pay around £30 for my own blood tests as NHS don't test all 3 thyroid ones(in my experience).I email my consultant but don't get a reply.Unfortunately,I am sorry to say that the NHS is crumbling under the strain.I look to the forum for advice and try to learn as much as I can.If you care to read my story,just click on the picture at the side of my name ,and there it is.I have tried to keep it up to date.Sorry not to inspire hope but it seems you are muddling through like alot of us.
Yes looks like I have had a similar experience to you - not a good one except you went for surgery which I haven't got the nerve to do.
It is early days still though since you had surgery this June. I thought particularly after surgery they would be regularly monitoring you and testing bloods to get your dosage correct, although I know what the NHS are like. It's scandalous. If you are not converting well have you been offered any T3 medication or as usual will the NHS not give you any?
The problem is I find is you can read all you like but if the NHS won't listen to you and you can't get proper medical treatment and can't get access for your issues and adjustment to treatment, then it's impossible to get anywhere and you end up in a cycle of ever increasing poor health. I'm sorry you have had the same treatment as I have. As I said just at a loss now as to what to do? Can't even see the endo for my yearly 20 -30 minute appointment till next July - it's a joke!
Yes,I know I could probably do with trialling T3,I have emailed my endo asking him to put me forward for a trial of T3 on the NHS considering my low T3 but he has just ignored me.Of course,he doesn't know my T3 level because he never tests it.The dose of levo I am on is also putting me above range on my T4 which is not great.He ignored my email about that too.I'll keep on it till my next bloods at the beginning of december(I'll also do my own) and hope he throws me off thinking it's OK and I'll reduce it slightly myself.I don't really want to start buying T3 myself as it's such a minefield and I don't know if I can sustain it financially.
I had to have surgery(it was last June I had it 2022,think I put wrong year before) because I also have thyroid eye disease and RAI can make it worse. Honestly it wasn't that bad and I'd do it again. Life before was intolerable as I was getting weekly migraines and couldn't see an end to it.I think I feel bad now because my T4 is too high.Today I feel about 90,body aching,struggling to get up from kneeling,internal shaking etc.That's one reason I wanted my thyroid out,because I thought it would be easier to control my levels with it gone and I seemed to be having no problems with levo.I did have a bad upset stomach with Teva so don't take that brand now.I think I'll get there in the end but it's very frustrating isn't it when blocks just seem to be in your way.
I know you are just ignored. The NHS is in a terrible state now - I fail to understand those that still say it's one of the best in the world - what a joke! It's nowhere near, it's falling apart and you're left to suffer. With me they've missed sending appointments, doing my bloods and so ended up with overmedication/undermedication and getting access to advice/help is virtually non-existant and even at yearly appointment I get that little time 20 - 30 minutes max that after they have said what they want, you have no time to ask what you need.
Some of the consultants are not human and shouldn't be in the job. I took my mother to one a few years ago in her wheelchair about her badly arthritic knees. She did have a few memory issues. I swear this is 100% what he said. We discussed surgery and he talked about complications afterwards and said if she didn't follow the physio exercises properly then it could result in amputation at the knee or even worse death but then said this may be the better option and less of a burden for me. My father was there as well and we were in shock and couldn't believe what we were hearing. It upset my mother. Needless to say she wouldn't then have an operation - I mean who would after that and so she was totally immobile when she died. I've still kept the appointment letter with his name as I never want to see the monster again. He's arrogant and not right in the head.
This is what puts me off having surgery - I mean I read there can be some bad complications and as I said I don't trust them with what I have experienced - are they really acting in your best interests? Then there can be a struggle afterwards with inadequate treatment and no access to other medication except Levo and I saw they have updated the guidance again to make it even more difficult to get anything else at this link:
I can't afford to buy it myself either so then what options do you have? You said you did okay with the operation but are now having problems afterwards with little help and there just seems a complete lack of care in the system. Just seems we are swapping one lot of poor health and problems for another and left in a limbo of poor health. We pay enough into the health service - it should be better and pay increases should be linked to good performance/short waiting lists not giving them for being as rubbish as they are now.
I can understand you having little trust in the NHS after your previous experience.Some consultants are so arrogant and dismissive they can't be called healthCARE professionals. I don't know what the answer is but arming yourself with knowledge,forums like these,advocating for yourself and if you can afford some treatments privately all the better.I had an opthalmic telephone consultation for my thyroid eye disease yesterday and the last time I was seen was last August.The first thing she did was apologise profusely that I'd not been seen for over a year and said they were very behind.They are seeing me in 3 months,but it will probably be more like 4-6.Wishing you all the best trying to navigate this minefield.
I've only ever been given Teva - it must be cheaper but have read it doesn't agree with some. I will ask for a change.
I have only ever been given Bisoprolol 2.5mg - a low dose (just cause was first given this at diagnosis 8 years ago when it wasn't as bad, A&E just ask me/look at my record and put me on same dosage) but as relapses got worse and with latest one earlier this year, my heart was still all over the place and racing and clearly wasn't enough as 2.5mg is low dose but I was that ill I was in bed for around 4 weeks and couldn't really do much. (The doctor in A&E did ask me if I wanted to remain in hospital but I said no I have a partner at home on own but was hell.)
I wasn't aware of that with TSH, some articles I had read said if TSH was supressed it remained a risk to heart/osteoporosis/increased mortality etc. Is that not true or do you mean it is okay in short term for TSH to be supressed but not in long term?
Yes SlowDragon has just said this but I had read a number of articles from internet saying that if TSH was supressed it remained a risk to heart/osteoporosis/increased mortality etc.
So this is not true then at all or did you mean it is okay in short term for TSH to be supressed (but maybe not over the long term?) I've read a few articles saying this though and believed they were true. I can't remember who wrote them now but if I just type now "Is supressed TSH a health risk? into Google it does come up with a bit of stuff.
American Thyroid Assoc. says this "Long-term suppression of TSH can result in adverse effects such as irregular heart rhythm or low bone density and osteoporosis. Therefore, the current American Thyroid Association (ATA) guidelines recommend keeping TSH suppressed only in patients with persistent cancer or high risk of recurrence." So am a bit confused?
When TSH has been suppressed by being hyperthyroid it’s very common for TSH to remain low or suppressed for many months or may never increase
Similarly on replacement thyroid hormones many many members have very low or suppressed TSH
As long as Ft3 is not over range you are not hyperthyroid
Always test early morning and last dose levothyroxine 24 hours before test
Extremely important to maintain good vitamin levels
What vitamin supplements are you taking
Also get coeliac blood test done before considering trial on gluten free diet
You might discuss with GP trying propranolol (beta blocker). This is the traditional beta blocker to use with Graves’ disease as it also slows uptake of Ft4 and also slows conversion of Ft4 to Ft3
Thanks that's interesting about TSH - I wasn't aware of that.
To answer your question about vitamins - No I don't take any vitamin supplements currently. If I am told to by doctor I would but they rarely test and my GP won't just do routine tests.
In my July bloods, as I mentioned, they didn't do a full vitamin/mineral test but my phosphates was low at 0.69 (no ref range given but online says around 0.9 - 1.5 is about normal) but nobody has said anything about it to me. When I asked nurse she just brushed it off saying something like "many people can be low in different things at different times" but wouldn't say anymore except speak to GP - it's nothing to do with us. But GP got these results as well and they've not said anything - although they probably won't have even looked at them.
I have read about taking supplements for thyroid although I've never taken things just in case or willy nilly. I would prefer to get them via diet (although I know it is not always possible). It isn't just the cost, even though I can't work, as many can be bought cheaply nowadays but I've seen on TV and read quite a lot of articles on it such as this study just recently:
It seems to say that taking manufactured lab supplements doesn't provide the same benefits as getting it from diet and that they can be harmful with excess floating around your bloodstream and causing damage. Also I read that you don't know how much you are getting from diet and if you are getting enough then taking more on top could do more harm than good.
I've heard a few doctors in the media say they do not advocate taking them unless absolutely necessary and don't get from your diet, maybe except some Vit D, and via studies done that say that those who do take them suffer more illness and greater mortality risk and so pointless taking them unless you really need them.
I do understand though that with illnesses such as thyroid issues that you may have more trouble obtaining enough from food etc. although I would still prefer to know which ones I need first and just take those. So probably means I will need to figure out how to get private test maybe once a year or something as I know NHS won't do it.
Yes I was planning on doing a test privately, particularly as my phosphates were low.
Would once a year test be reasonable time frame (as I can't work now and low income) and I heard you have a list of private testing companies. I would need my blood to be taken as I can't do it myself but I have car and can travel in my area.
Yes, there are several papers out there about suppressed tsh and osteoporosis etc risks. But, the point is, none of these papers measure the T4 or T3 at the same time. Of course, if your T3 is too high, above range, you will be hyperthyroid and bone will be broken down faster than it can be replaced and you could end up with osteoporosis. However, these papers distill it down to "suppressed tsh = osteoporosis", but its not the low tsh doing the damage. You can have a below range tsh, and still have t4 and t3 well within range. These are the values that are important.
I was just confused as there are many papers about this and thought some of these, written by supposed experts would know this (or they're not that expert really).
However after dealing with quite a number of endocrinologists/GP's for thyroid I can well understand as most of them don't seem very good or expert!
It's often stated, including by some on here, that some doctors only mainly test TSH alone and go by that so I don't know what that's about. Even mine always do TSH and usually test either T3 or T4, but not always both. I sometimes ask why but never really given an answer - just it's what has been requested by the doctor or suchlike.
I did even read on here somewhere the other day, I don't know if it's correct but someone said all you need to know and go by is your T3 and not T4 or TSH, I think they said because T3 is the level of actual active hormone in your blood.
It's just that I don't feel well even though at my last bloods my T3/T4 are now in range but my TSH is supressed. As I said earlier I have still been getting heart arrhythmia/palpitations - racing at times (mainly exertion/after eating but not just the normal expected increase after such) whilst dropping very slow at rest like 52 BPM. I also still feel tired a lot/weak. About a couple of years ago though I did have 24 hour at home heart monitor (not really for this but had few chest pains) which didn't show anything up although I didn't record any symptoms myself during it either.
None of this was usual for me before Graves (and not usually when stabilised on Carbimazole alone in past) and so didn't know if it could be due to TSH alone or due to medications (on block & replace - Carbim 40/Levo 100) or even Levo brand (which is Teva) or whether due to low phosphates still as blood results in July showed were low at 0.69 - but I was never told anything about them or to do anything even though online says should be in range about 0.9 - 1.5
Should help you understand where the the issues come from.
eg :
~ where research actually found minimal / no increased risks for 'low but not supressed tsh' , but did find some increased risks for 'supressed tsh' ......... this has then been used by guideline makers (and referenced in other research) as their evidence to show "below range tsh has increased risks , so we shouldn't allow it " (but they fail to mention that 0.04 to 0.4 was actually fine).
~ the issue mentioned by others , ie. much of the 'evidence' of risk comes from studies that only had information on TSH, not T4 (or T3 ) ~ so it can't show whether any increased risks they found were actually caused by high T4/T3 .
~ TSH relationship to T4 /T3 levels changes a little bit once patients are taking replacement thyroid hormone . You get relatively lower TSH / relatively higher T4/ relatively lower T3 ... so any findings about low TSH /risk from research done on subjects not taking thyroid hormone replacement , (or done without information on T4 / T3 levels), cannot by directly applied to the TSH levels of patients who ARE taking thyroid hormone replacement.
Thanks for the link and information. Much appreciated!
With been on block/replace since early June and still not feeling well and last bloods (mid Oct) still showing low TSH 0.09 mU/L (0.35 - 4.7) I probably wrongly assumed that was it after those other articles I read.
But it could be other things as SlowDragon pointed out about vitamin levels and in July phosphates were low. Also could be Levo brand (Teva) as that is the only one I have had. Understand this one can often be poorly tolerated.
When I joined this open, patient to patient forum in around 2016 I too was in a very lonely place - and there were around 15 thousand other forum members here to help and support me - roll on some 7 years and our numbers are now 134 thousand -
so what does this say but that thyroid health issues are not well understood, managed or treated by mainstream medical, and we share the load and help each other find ways through a system totally over stretched and close to - if not already - broken.
Graves is a poorly understood and badly treated auto immune disease for which there is no cure -
the Anti thyroid drugs buy you some time and seen more as a sticking plaster and definitive treatment is encouraged as then you are ' off the hospitals books ' and dispatched back out into primary care for your doctor to try and manage your symptoms, health and well being.
Doctors in primary care used to be able to prescribe all the treatment options for hypothyroidism - namely T3, T4, and Natural Desiccated Thyroid but can now only have T4 - Levothyroine - the cheapest treatment option - in their box of tricks -
should T4 not restore your health and well being the anti depressant is pulled out the NHS hat - leaving the patient feeling it's all in their head and leave further confused and blaming themselves.
When push then comes to shove - you start questioning your treatment - and find a forum and find it's a common problem but that you need o go back into the NHS system if you wish to be considered for any treatment other than T4 - and financial constraint rather than medical need face you head on - as it's a post code lottery - who gets their life back - or not.
I became seriously unwell some years after RAI thyroid ablation for Graves in 2005 - and found Elaine Moore's first book Graves Disease A Practical Guide very informative and since my doctor had confessed I was the only patient she had with Graves - I purchased a second copy for her - but she declined the gift.
Doctors in mainstream medical work to guidelines and with a thyroid AI disease you may not fit into the desired boxes and ranges and made more ill - when treatments are reduced in order to conform to the perceived ' norm ' .
So, anyway, you need to consider what to do - everyones journey with Graves is unique - no two people have the same journey - which again makes it difficult to write a treatment protocol.
We do now have a couple of research papers that may help you make some decisions -
I would not recommend RAI to a living soul - the evidence of it's damage on the body is still being found out or should I say acknowledged and writen about - true - it's a cheap fix and it sounds more appealing than having your throat slit open - that's if you even get to be given a treatment option - but a thyroidectomy is a much ' cleaner ' and a more precise option - with no long term unexpected consequences.
P,S, Having been refused any treatment options to T4 - Levothyroxine monotherapy - I now stay away and self medicate taking Natural Desiccated Thyroid and am much improved.
I agree with what you’ve said there about being given an option, I wasn’t and wish I had never had it as also was lied to about it bringing the thyroid back to normal, ( not very trusting now of medics )
I've read some of your posts and is one of the reasons I refused RAI - along with others of course as you have to take into account many opinions and also read other sites such as Elaine Moore, TPAUK, Stop the Thyroid Madness, BTF, ATA etc. I have also read quite a few papers such as the renowned Professor Toft one. These all made me think RAI was not worth it - though undoubtedly is the easier treatment option to take. Trouble is I always read up about things and don't just take for granted what doctors tell me.
When I had my once yearly appointment with my endocrinologist in July and put these to him - had printed many of them and taken them with me in my file - he said yes he had been talking with another colleague recently about it (another endocrinologist at my hospital - they are senior ones and of honorary senior lecturer status) and they had noticed that those who have had RAI as opposed to surgery or remaining on AT drugs had not had as good outcomes generally. I thought what - been talking recently - hasn't this been general knowledge for most of us for some years and these are the supposed experts. I think there is loads of evidence out there now about RAI - I've got lots of papers and stuff about RAI and cancers/TED/pulmonary problems/worse quality of life etc. etc. I read things about this years ago when I was diagnosed (8 years) and Professor Toft's paper was 2017 which my consultant said he was aware of. It was as if they had only just stumbled across this lately. I have been talking about this for years in my consultations and why I was refusing RAI - admittedly not with this consultant as only seen him once but with others including the colleague who he said he had discussed it with recently. In fact he was one of the main consultants who was trying to push me into having RAI just last year. It really is unbelievable. It makes you wonder what they are doing and how they ever got to be an "honorary senior lecturer" in this field.
Yes I have those pubmed.ncbi papers you mentioned printed in my file as well as others such as 33283314 - Comparison of AT drugs versus RAI or surgery for Graves Disease - but my question is why don't these consultants know about them or pretend they don't/say very little when you mention them?
This is one reason I don't trust them - they are not advocating treatment in the patients interest - only theirs or the NHS's to make their lives easier but ours worse. I have refused thyroid surgery as well - I've read all the stuff on complications with frequent damage to nerves causing issues with breathing, swallowing, chewing, voice and damage to parathyroid glands causing issues with calcium - all of which could be permanent, although not always. Also there is the life threatening risk of hematoma (bleeding into the neck) after thyroidectomy which maybe quite rare but which is more common with Graves patients causing asphyxiation/respiratory distress. One paper on it I read says this "Patients with Graves Disease undergoing thyroidectomy are more likely to suffer from postoperative hematoma and hypocalcemia compared to patients undergoing surgery for other indications. The results suggest that the primary indication for thyroid surgery has an impact on postoperative outcome." This paper is entitled "Thyroidectomy for Graves' Disease Predicts Postoperative Neck Hematoma and Hypercalcemia: A North American cohort study but I've also read quite a few others about it. Definitely puts me off - I don't fancy suffocating to death. I've also read many posts on here about suffering problems and complications after surgery - some struggling for years. Also as you have said I don't want problems fighting to get adequate treatment by the NHS either if T4 only doesn't work out. I've read this about it:
I'm fighting a losing battle now with NHS trying to get adequately treated for my Graves symptoms on AT drugs and this would probably be another one. Even though I'm not well on block/replace I won't be seeing anyone till next July (a year from last) and can't get any help or ask any questions/advice in the meantime. It's just sort of grin and bear it. So why would I trust these people/NHS to carry out a major operation on me? That's how I feel really - I'm bad now - can't work etc. but I could feasibly end up in an even worse state? So I struggle on and don't have a life, don't go anywhere or do anything - only food shopping every couple of weeks and have no breaks/holiday for over 6 years. But wonder how long I, or my partner, can go on like this. The problem is whilst my consultant currently supports my choice he says I have severe Graves and high antibodies (was 7.9, last time 7.3 TrAB) and says very high and I am unlikely to achieve remission at all for very long and can go severely hyper very quickly. So looks like I am stuck not knowing what I should do for the best and how to get a life. I will never be able to do anything much again if I remain like this. I won't be able to ever go away/have a break and my partner is truly fed up and I don't know if she will stand it for much longer either. I cling to the hope I may get better - I don't think my consultant believes this.
Anyway I better stop now - it's getting to be a essay. Truly thanks for helping so many people and giving advice/support/information on this site. Its a fantastic resource and really knowledgeable and helpful people. Thanks.
The NHS follow and work to the guideliness and the hospital needs to balance it's books, and work to the skill set within the endocrinology department - it may sound rude - but sometimes I see these people as one step away from being a ' bot ' :
I too had Prof Toft's Counterblast article to hand - I even emailed him as to my situation and he was supportive and agreed that my understanding was correct - I also contacted Lyn Nymott direct - CEO of Thyroid UK - to help me write a letter as my cognitive function was so poor - and am eternally grateful to these two people - but it got me nowhere within the NHS system.
The guidelines are not fit fo purpose and until they are changed I'm afraid it's very difficult finding medical professionals, within the NHS system who care enough to go against the guidelines or directives in place within the hospital setting and jeopardise their position.
Interesting the Britsh Thyroid Foundation have not yet reprinted their Patient Leaflets on Graves and RAI treatment - which were given to me at my very first hospital appointment back in 2004 - which I find highly alarming and quite why RAI is still offered as a first line treatment in what we presume a health care setting is totally incongrueous and beyond me.
I am even more aghast, if that is possible, reading this post. Having myself been diagnosed as hypothyroid and become all too aware of how appallingly hypothyroids are treated/not treated, I felt stupidly sure that the clearly more difficult thyroid illnesses must be soaking up all the attention/resources/etc. It seems I am again disappointed. What are these endos actually doing?
That’s not what I heard! (Tongue in cheek) AND if they treated hypothyroidism properly so many hypothyroids might not move on to diabetes or perhaps even any of the stated Co-morbidities.
Most don't seem to do much and live in their ivory towers. Since I got Graves (8 years) I am astounded at the poor treatment and how we are left to rot and frankly why so many of us stand for it so much when so many complain of inadequate treatment. And it's not just thyroid patients - many of my family including mother/father have had terrible experiences/treatment from the NHS. And we pay so much for it. We seem to stand for anything here whether poor health service or any other issues - in France they would have had another revolution. What has happened to our health service is criminal. Makes me fear for the future! 😩
I think as hypothyroid we get treated badly. I hate to think what you guys with Graves might be treated. I too fear very much for the future. They might ask for payment of some kind from patients but really they would need to up their game considerably. Don’t know what else we might do instead.
I found asking doctor or nurse obstructive when asking for results or they would provide result and not range. I had better outcome asking receptionist to post printed copy. If there’s any obstruction there are other formal ways to request copies of hospital records.
Look on the hospital website as most have a contact email for data or health records coordinator. It might be listed as health records department / library. If not on website would try the switchboard and ask it there’s a medical records department.
Hospitals usually have their own application form (this is similar to subject access request- SAR) where you can request single result, or entire record. I have done both. The single record was emailed back quite quickly. The full record being a larger record was posted. ID and a witness signature is required which I was able to submit via email. Photo copies via post can be used too.
Exactly that's what they did with me - in July I asked the consultant's secretary (who is very obstructive/unhelpful) for a printed copy of my full lab results with ref ranges. She said would be sent to GP. Over 6 weeks later they turned up in my GP online account. Just a typed letter to my GP with result with just high/low/normal next to it. No ref ranges and not the lab results I asked for.
But now, from last month, endo nurse rings me with them. Although she will provide ref ranges if asked, this is only verbally. I have read a number of times on this forum that you should keep a printed copy of your full lab results with ranges which I have never done in past and so you don't know where you are at and are just relying on them which I find dangerous. Although I said I believe I am entitled to them she said "what are you worried about I won't make a mistake" and that they don't give printed copies as it takes up too much of their time. When I asked if I could get them through the hospital or the Patients Know Best portal she said she didn't know.
I don't think you would say that verbally is really good enough and with the lack of care/monitoring I have had in past I don't think it is either - I don't really trust them which is sad really. I will do as you say but I wondered if anyone on the forum knew under what regulations/law or where it says we are entitled to a full printed copy of our lab results - is it like SAR/Freedom of Information/GDPR or something else as then I can put this to them and they can't obstruct me again, rather than as at the moment having no specific grounds but only what I read.
It is the hospital that are doing bloods now since GP has messed them up in past and overmedicated (not done them when should) so I will try getting from hospital as you suggest - with SAR as I've tried with endocrinology (endo secretary and specialist nurse) but no luck with getting lab results with ref ranges. I even tried through Patients Know Best portal but my trust doesn't provide results for patients on there apparently.
Maybe not all of your symptoms can be attributed to your graves. You have an autoimmune disease which makes you more likely to get another I understand. The low phosphate is a flag to me. I also had low phosphate and was told by GP ‘we don’t worry about that’. Actually it was due to long term undiagnosed primary hyperparathyroidism (PHPT). To check this your GP needs to test parathyroid hormone, calcium and D3, get your GP to do this. PHPT is a known cause of low phosphate and a lot of the symptoms overlap.
Yes I read that it can be low due to parathyroid and that it wasn't usual to be low as we normally get enough from our diet unless you have alcoholism but that's not too likely as I haven't drunk any since 2014.
Also what your GP said to you was exactly what the endo nurse said to me and that loads of people have differing levels of different things at times. I thought what a brush off. Why bother testing for anything at all then if you can just ignore it?
I'll attempt to get GP to look into it but they're obstructive so may end up having to pay privately for comprehensive bloods first to take with me as it may then point to parathyroid or something as otherwise they may just brush it off (as usual!)
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A new Endo with attitude
Had to stop Carbimazole cause bloods cells went low, so now not on anything ?
Help with Results and Support Please 
Blood test results belong to NHS
Time to glance over my blood test results? 7 weeks into treatment for Graves...
