So another update on my previous posts - not being monitored appropriately by my current endocrinologist, I work in the same hospital which doesn't look good for other patients - he copies me in to the odd letter to my GP, doesn't send blood results to me, doesn't respond to my queries (even when I was showing signs of reacting to the medication) and has given on occasion incorrect information - I haven't seen him since he prescribed this god awful medication (sorry appreciate it's a life saver for some but it's making me so ill), he hasn't made any attempt to see how I am getting on with it, I feel like a third party in my own healthcare, he looks at my bloodwork, which even sending me for tests has even been delayed - so I requested a discharge back to my GP in the hope he could monitor me - GP states he can't monitor me as he's not a specialist in this area so wants to refer me back to either miles away to hospitals I'd have a nightmare getting to which isn't appropriate or back to the same hospital under a different consultant - I just broke down in tears on the phone and he said ok I'll re-refer you and the call ended. Basically I'm done, I've had enough of navigating this system. The dog has terminal cancer, my poor baby, and doesn't have long left, he's the last of my responsibilities, I know how this would seem to others and I apologise in advance but ... I'd like to follow him, I exhausted, ill, unsupported and frankly with all the other constant issues and traumas in my life it's not worth it ... i can't really afford private testing so I am now out of ideas of how to navigate this. The system hates me.
I hope for everyone they don't have my experiences - please I really do because nobody deserves treatment like this.
The system is backed up and very many people are feeling as though they are not getting the help they thought they would - working in a hospital - presume you are seeing this first hand.
Just read your last unanswered post, similar to this one, presumably because no one replied.
Since you T3 and T4 are now in range - why not try the same dose of the AT medication each day - you may stabilise better following the natural rhythm of the body's 24 hour cycle.
Buy a pill cutter and chop the dose prescribed in half -
Your TSH will be the last marker to move and -if - and when this might happen - is anyone's guess -
as you have Graves disease and you have Graves antibodies circulating in your blood which tend to cleave onto - sit on - TSH receptor sites suppressing the TSH readings - which in turn pushes up own thyroid hormone production causing your T3 and T4 readings to go above the ranges and give you symptoms of hyperthyroidism.
There is no way we can remove these antibodies from your blood or TSH receptor sites -
so we are put in a ' holding position ' with the AT drug - and semi-block your own body's natural daily thyroid hormone production -
while we wait for your immune system response to calm down -
in general the NHS allocate around a 15-18 month window with the AT drug in the hope that in this time your immune system response calms down and you thyroid re-sets itself from this ' blip' .
During this period the AT drug should be titrated up or down depending on blood tests - which unfortunately these tend to run a couple of weeks behind symptoms being experienced.
Too low a T3 / T4 reading and you can experience the equally disabling symptoms of hypothyroidism - there is a fine balance where your T3/ T4 need to sit to give you back your wellness - and it can take much time and skill - especially if you are in your first phase of Graves and your immune system still angry and your Graves raging.
Most important to keep your core strength strong and solid during this roller coaster of symptoms and emotions - so try and get a reading / range for your ferritin, folate, B12 and vitamin D - as with a strong core strength you will be able to ride out this first phase of Graves more easily.
I wouldn't start smoking again - though I never did - but still diagnosed Graves - and read that smokers attempting to quit should be monitored closely for changes in thyroid function.
Yes - I know - like that's going to happen in this day and age - but anyway - I need to dig a bit more as I believe stopping smoking generally leads to a diagnosis of hypothyroidism.
Thanks for responding it is appreciated. I will look into getting a pill cutter until Charlie's time is up, need to functioning enough for him.
Women's bodies don't run on a 24 hour cycle in the same way men's do and I think that's why we take so long to settle down with medications etc, as they're all tested on men, but we're not little men, our systems are totally different.
I am not at the beginning of Graves disease myself, i was diagnosed well over a year ago - unless you mean since being medicated which has been a few months and I've settled onto it at all - the only symptom I have of hyper is warm hands, literally sat here bundled up in several hoodies etc lol
I can't even get them to test me for this "serious condition" never mind range for your ferritin, folate, B12 and vitamin D and I can't consider even looking at that privately just now from affordability perspective as I am trying to do up a house that the Housing Association are refusing to sort out .... don't get me started on that, there many reasons why I have given up the will .... too many to list here ... there is no destressing to be done in my life, bad things happen to me A LOT hence my current stance of checking out .... I am exhausted.
I do appreciate the advise, will certain look to keep myself going whilst Charlie is with me
I started this reply to your update yesterday & I wish I had found the time to complete it then. I was going to advise you to start a new post as updates tend to get lost on older posts, so well done for doing a new post.
Firstly, you aren’t alone. Many feel as you do, not just in limbo, more like totally abandoned - between doctors, who fob your issues off as not their department with GP referring every issue to specialist no matter how unrelated & textbook symptoms are “not thyroid related” because your levels are “in range” .
I’m very sorry you are unwell and have the worry of your furbaby to deal with, that will be an added burden.
With regards to the TSH, this will takes the longest to recover. Focus on FT4 & FT3 being in range. If you still have hyper symptoms try & bring them down slowly a little more. Looks at halving a 5mg / taking slightly different eg 5 / 7.5mg to get the perfect dose level.
Many doctors aim to lower FT3 & FT4 too harshly with sole purpose of “forcing” TSH to range. This is a poor approach as sometimes the TSH doesn’t recover.
I’ve been on carbimazole nearly 5 years & FT4 & FT3 have been “in range” for the majority of the time. The TSH has been undetectable with the exception of a tiny rise once (never been in range) when FT4 & FT3 were kept borderline under range for 3 months.
Being hypo felt worse for me than when the hyper which occurred gradually - likely untreated at least 4 years. Although I felt my very worst when FT4 was high & FT3 low which has only occurred briefly.
My specialist discharged me to GP until I’m ready for Radioactive iodine treatment. I’m afraid to say they are entirely clueless & both disregard the instructions advised by specialist on testing & managing levels.
They accommodate my request to test, if they attempt to argue eg it’s not due, they don’t for long. I do find I really have to fight to get dose altered correctly. I recently had to argue for an increase the subsequent test was TSH only and although abnormal did nothing to follow up. I had an on record apology & another test lined up.
Gluten can be a common issue with thyroid autoimmune, but it is an all or nothing situation. Any trace of gluten may cause a reaction. Have you had a celiac test?
Both your specialist & GP are able to arrange TSH, FT4 & FT3 testing. Be proactive - be politely persistent and ensure your regularly tested. Start arranging follow up as soon as one test is done. You shouldn’t have to navigate the system to ensure you get a basic level of monitoring & treatment but it’s what’s required.
Try your very best to consistently take carbimazole on continuous dose because if you tweak it several times & then test you won’t be able to gain information about how a dose settles.
I arranged online access to GP records, before setting that up I requested printout via reception. For hospital records the endocrinology department secretary would post me copy’s. With other or older scan reports ect I would submit a request to records department (application form / ID & witness), which I’ve done by email. Keep chasing up your records & don’t be put off.
Keep posting / ask any questions you need for help.
Thank you for your response it is appreciated. I haven't been able to access any further tests, I am generally grain free, it's always left me bloated, upset stomach and generally miserable when I have grains - even more than I am now which is quite shocking.
GP re-set my online settings, as it looked like everything had been deleted so I can see the letters etc now - although, and don't quote me on it, I haven't seen my results on there ...? I'll double check that later.
The problem I am having is whenever I ask anyone for any advice or testing or anything, they're so angry with me? like how dare a minion like you ask me to do something??
Despite how ill this vile medication makes me I have been taking it still, I just can't tolerate much of it without throwing up .... I haven't eaten today, I don't feel the slightest bit hungry, I am tired, miserable, my joins are kinda sore, yet I'm "in range"?
That’s sounds like a parameter setting issue on the system. Tell them to set the prospective date as your date of birth not date of request or reset. That way you will see all the records online not just from the date it’s set at.
Are you absorbing all your dose or are you sick before you can absorb it. That would cause an inconsistent daily dose.
Could you try taking more / smaller doses. Can your doctor offer something to prevent you feeling sick or switch to PTU.
I’m never actually sick - I’m one of those that are blessed with wrenching over the loo but nothing happens, stomach churning and then nada.
When I told the GP pharmacist I was only taking 10mg daily she notified my endo and he just sent a letter to my GP stating “against advice she is taking 10mg daily due to GI” and that’s it 😂😂😂 nothing just a statement 😂😂😂
Terrible you are wrenching (or stretching If autocorrect has its way).
It’s there something to help with nausea ask Dr, ask chemist ask everyone & keep asking, make a nuisance of yourself & don’t feel you shouldn’t be. Doctors only deal with what’s in front of them. If they can record a note & move on without doing more then that’s what they do.
If your in range on 10mg it might be right dose for you anyway.
I am going to start rattling if I have to take more stuff to keep the stuff thats making me ill down I guess at least this way I won't have to spend any money on food :/
10mg daily is too much - that was definitely making me very very ill before - I think it needs to be 7.5mg or 5mg but nobody will listen so its pretty much pointless ... I'll just mess with it until I feel ok enough to function properly I think
I hate to say it but I think being treated at the hospital where you work is probably making this all worse for you - you are possibly more aware of it’s faults and while an awful lot of people complain about the awful service they feel they are getting you are feeling it worse because it is ‘your hospital’ and you are disappointed in it.
It’s a funny condition Graves - there you are feeling absolutely desperate and deadly and in my case I was left for three months before I actually saw an endo.
My GP started me on carbimazole because my results were below recordable scale. She only started me on 20mcg and after a month i had bloods done then I got a letter from my endo telling me to get a prescription for more from my GP and to double my dose which I did and after two months on that I was totally hypo.
Reading how desperate and stressed you sound reminded me of how I felt back then and I think that goes with having Graves. I’d say I was pretty volatile and very easily upset - I had seen a GP three months before I reached meltdown and she just looked d at me like I was some curious specimen on a slide and told me I was ‘needing my holiday’, I came out absolutely beside myself furious as you can get with Graves.
Fortunately the next GP I saw was good and knew exactly what was wrong - well I had lost so much weight the receptionist commented on it when she brought my doctor’s coffee in and my hands shook like mad so fortunately things moved on from there.
I hope whoever you see next is better - for a start you are legally entitled to have all of your blood test results - I just asked at my GP surgery and they printed them off for me - free. So you could try asking there. My hospital uses MyChart now and my results are on there before my doctor even sees them.
Your GP can’t treat you for Graves although when I had a sore throat just after I started on carb I went to my GP for blood tests, when I started showing signs of being hyper again when I started taking levo along with my carbimazole as part of my block and replace my GP was most unwilling to increase my levo - so she prescribed amitryptiline. I had stopped that by the time I saw my consultant and when I told her about it she just rolled her eyes and said that wouldn’t have been any use - next time I needed an increase I had my little notebook with how I felt at every stage of treatment / how much of everything I was taking etc and surprise, surprise I my GP very cautiously gave permission (and enough levo) to increase my dose on alternate days. Suspect she had been in discussions with my endo somewhere along the way.
To be honest I doubt if your average patient has much contact with their consultants outside of their ten minute appointment. It’s just worse for you working in the same place you are being treated - a lot of patients think their doctors are idiots - you kind of know yours is. That plus the nature of the condition I’m not surprised at you bursting into tears. Until my Graves got to a good place I was like that or over the top angry with people.
Then with your poor little dog being so ill it’s not surprising you are feeling so distraught. Graves is a horrible condition, you are far more ill than you look. On the surface I looked great, I had lost a load of weight and looked really good but inside I felt awful - I was a real mess but no one really understood. So between your little dog and all this I’m not surprised you are falling to pieces. Please don’t do anything awful to yourself because believe it or not you will get better, it doesn’t feel like it right now but you will. My first comment on here was would I ever feel normal again and yes I do - or I’m as normal as I’ll ever be.
Keep in touch, this group was a lifesaver for me because people here really do understand x
Thanks for responding it is much appreciated however, as I had already had an abysmal experience at a previous hospital I actually was a bit more confident in being re referred to the one I work at.
A bit of back story might help: I was diagnosed in June 2022 after yet another bout of trauma inflicted by an ex ... I felt unwell, chronically fatigued, tinging sensations, hungry, gaining weight and out of breath etc. I phoned the nurse who sent me for blood tests as I was concerned about diabetes in the family. The GP phoned me later that day and said "you appear to have Hyperthyroidism I will speak to an endocrinologist and get back to you" that was June 2022 and I am still awaiting that call! I chased, I was told I had to be patient and wait for a referral - I didn't know was being put in - I waited, so I chased, I was told, there is a four month waiting list, be patient. Reading about the condition I realised it wasn't something to mess with but after numerous chases and being told I WAS THE PROBLEM AND TO BE PATIENT I looked for alternatives, I started natural therapies that made me feel a lot better. I saw my Endo in October 2022, having had no medical input. I said I wasn't keen on the medication at this time as evidenced when he realised I had not been prescribed or seen by my GP I felt neglected by my GP and that he would be unable to monitor the condition appropriately. The endo proceeded to tell me that natural remedies DO NOT work and that I shouldn't base my decisions on emotion! I believe if he had said that to a man he would have lost teeth at that point. I reluctantly agreed to see this misogynistic man again in December 2022 following blood tests, to which he would discuss if I had reconsidered medication. I agreed fully to this plan. In December 2022 with no further consultation or appointment, I received a discharge letter stating that 'after review I did not want to take medication and that I clearly was looking for alternative therapies as my numbers shown'. He discharged me back to the care of my GP without further consultation. I was stunned but awaited contact from my GP. In February 2023 the GP sent me a text asking me to come in for a health check, which I thought was about the thyroid, it wasn't they just wanted to do a health check that I should have had at 40 but I had been missed for three years so they'd do it now. I requested at this appointment that my thyroid bloods be checked which they did. I phoned a few weeks later and got the results which had significantly increased. I asked what action should be taken and was ignored. I wrote letters of complaint about my discharge but mainly the misogyny of the consultant (it was deemed that it was appropriate and no further action would be taken) and about the GP negligence. The patient coordinator emailed me to express her "grave disappointment in my complaint but the GP would contact me regarding it". The GP telephoned me some weeks later and stated my refusal of medication is why nobody had bothered with me, I explained that I was meant to be reassessed but wasn't all as above, to which he insisted that I should have chased them more, that I had been difficult over taking medication etc. I explained after their negligence in the first instance i did not and still do not feel confidence they can manage this condition or the medication moving forward - which is what the consultant said would happen. He then suggested "re-referring me to Lincoln County - see if they can convince you!" I was livid at this exchange but agreed to the referral. That referral came through about March April time I think, he wrote to my GP and said to start me on 20mg of Carbimazole ... I never heard from my GP again. I went back for my follow up appointment at Lincoln in July 2023 - just prior to me moving house and technically in to the Lincolnshire area, where I saw the thyroid eye doctor instead of my consultant - he said he was disappointed I hadn't started medication, he said you should have chased your GP to administer this medication until they did, I stated that there was no way I would chase that medically negligent practise to do anything and I wouldn't trust them to keep a cockroach alive never mind living humans but I would take medication if he prescribed it - he did - and that's where my journey starts. I changed GP in August, explained the GI issues and why I could only tolerate 10mg daily they graciously gave me emergency Carbimazole until I had my medication review and they noted I was only taking 10mg daily and the letter stated as much from my Endo to my GP. during this time I had cold and flu like symptoms and bruising which after reporting the endo sent a letter to my GP two weeks later to say that bruising wasn't an issue with this medication. This is the last I heard from them before I gave up and requested my latest bloods and a discharge.... baring in mind, I have had to move house, care for my dying dog, move my son to uni, argue with the Housing Association re the disgusting, flea ridden state this swap has been left in (not as agreed and someone would have signed it off), doing a uni degree, and work full time and I am on my own and will be now for the rest of my life due to trauma of EVERY kind .... none of which has been for a want of trying. In hindsight I should have just punched that first Consultant full on in the face, a regret I will just have to live with .... I know that I am entitled to my results and at least half decent care, but I don't get it, no matter if I am nice as pie or I lose my sh!t ... it's me, people, this system, it all hates me ... and I have no idea why :/
You are sounding very wound up - not that you do not have justification - but this stress and anxiety is fuelling your immune system to ' take off ' again and cause further havoc both physically, mentally, psychologically and spiritually.
Please use this forum to vent your frustrations if this helps you get some clarity and try focus on going just going one step at a time -
Graves is overwhelming - it's the nature of the beast - as it can stop you in your tracks and throws your life up in the air - makes ordinary issues extremely difficult - the rage and upset is boiling within - even with support people are confused as your actions are not ' you ' and at a loss to know how to help.
Wow! What a nightmare. No wonder you’re fed up with them all. It looks like a case of blame the patient for our lousy service doesn’t it.
I’m afraid having been lucky to be ok with block and replace treatment I can’t offer any advice about non conventional ways treating Graves - other than that I did work on my diet and vitamins etc - I’ve come to the conclusion that with doctors it’s very much do as I say or it’s ‘goodbye’. I suppose they are busy and they are trained in conventional medicine so they’re not interested in anything else especially not anything like vitamins or minerals or diet or patients who doesn’t want to do things their way.
I’ve got osteoporosis and decided I didn’t want to take their medication - I tried them for four miserable months - so I’d say I’m on my own now working on diet, vitamins and minerals and exercise and I’m not expecting any further help or tests from my endo.
You’ve certainly got an awful lot going on in your life so the very best of luck with it all.
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I guess at least this way I won't have to spend any money on food :/ 
Graves, on carbimazole for 10 months
Graves Carbimazole Titration FT's
Graves’ disease - Carbimazole - high cholesterol 
On 40mg of carbimazole and also 120mg of propranolol for graves disease.
Graves and TSH levels too high on Carbimazole - help!
