I posted a few weeks ago about my daughter having her thyroid results misinterpreted by her rheumatologist. The consultant did phone her with an apology and has referred her to endocrinology. In the meantime the GP was asked to prescribe carbimazole.
However, the initial rheumy prescription was only for 14 days so my daughter held off starting medication until she was able to discuss her condition. Unfortunately she won't get an appointment at our local hospital for months according to the department and in the meantime the GP has refused to prescribe - just as well she didn't start the meds to suddenly stop!
She had bloods redone a couple of weeks back but we don't know the results only that after chasing up with the endocrinology secretary, the GP has been told to prescribe and the dosage has been increased from the original prescription.
It just feels like my daughter is not being properly looked after at all. Should I pay for her to see someone privately and in which case who would be best? Or just wait until her NHS appointment comes through? She has also been prescribed propranolol alongside the carbimazole - the prescription hasn't appeared yet so she will be starting the meds possibly at the weekend or early next week. This just all feels like a nightmare as she's undergoing more gastroenterology tests in connection with her coeliac disease too - it's been such a stressful year for her too with A levels and a relationship break up... would this be connected?
Thank you for any more advice you can give - I am passing your replies on to her.
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SjogiBear
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You are entitled to a copy of the results it is the law
I can just log into my doctors surgery and view all my blood results and my medical records including doctors comments (freedom of information) which are eye opening. I always wanted to know what a consultant was scribbling away on my notes. I wonder if they are careful of what they write now we the patient are allowed to read them?
Ask for a copy and put them on this board so members can help and advise you
You have to ask for access and the access will only be from the date of your request. I've been asking my husband for several years to do this and he finally did, only to have access from April 2024! I'm so cross because he's now having chemo which I wanted to backtrack because of yet another mistake by the surgery etc. The sooner you ask the better.
That’s tough. I managed to get my Endocrinologists notes from 15 years ago to see what my initial diagnosis was. His writing was illegible . He did say I had Graves’ but the writing! My grandson who is 7 writes better than he did.
I sometimes wonder if they write in code! These days you get an outcome letter copied to you if you're lucky. When I say lucky though that's a bit relative, I've had several where they've given the wrong information, like the consultant who said he was pleased to have seen me in clinic, he didn't, he telephoned, then said he would book me another appointment, he didn't! OH has had an outcome letter saying it was unlikely he'd had something, his results were all clear. Strangely on his record of afflictions it's been added in, now they think he's had it, his outcome letter says he didn't, clerical error? Not good news is it!
I took a part time job in Medical Records years ago. I used to pull notes ready for clinics and I had trouble locating a patient’s notes. I saw a Consultant had signed them out so I contacted his secretary to ask for them. She couldn’t find them so we asked him. They were in the boot of his car he had been driving around with them all the time!! I have many similar stories of when I worked for the NHS
Forget what I just posted I just looked at your daughter’s results and she is definitely hyperthyroid. How does she feel with levels that high? Mine have been extremely high in the past I was in a right state physically and mentally
Just to add my daughter was diagnosed with celiacs disease and I feel so guilty about it because she has obviously inherited my AI gene. She is doing ok and following a strictly gluten free diet
I know what you mean about feeling guilty - I got ill at 16 with lupus (after stress of O levels?) and now also have Sjögrens and APS so the AI disease is definitely genetic. However, we do need to keep in mind that it's not our fault in any way. My daughter was diagnosed coeliac at 10 and has been strictly gluten free since then - she still has problems with persistent diarrhoea though hence the investigations after she has moved from paediatric care to adult care at 18. She also has hidradenitis supporativa - a nasty skin condition. I don't want our children to slip through the gaps with the current state of NHS care out there! I will see if she can get hold of the latest blood results that were requested by endocrinology although our surgery does not yet allow us to access test results through the NHS app.
If you're in Scotland they don't but you can still ask for a print out. If you're not in Scotland then you should persist in asking, we, as I remember it, were sent a notification saying we could get this app and how useful it would be, so I did, I got the EMIS patient access app and it's pretty good. Then they sent out another missive recommending My GP, I didn't bother but the point is if they are asking patients to get these apps then surely they need to put as much of our info on there as they can. I can see consultations, with GP notes, clinical letters, test results and medications, it's really useful. The NHS app will connect to them too.
I believe your daughter is being treated for Graves Disease - as detailed in my previous reply some months ago - but currently we are missing the antibody blood test which is the medical evidence and proof of diagnosis -
This should look like a TRab / TSI / or maybe reads as a TSH Thyroid Receptor blood test result with a cut off number sitting alongside the result -
Does she have on line access to her medical records - we are now legally entitled to read all our medical records held at the surgery and guessing there has to be mention of which antibody was found positive and o/range and the reason for the prescription of an Anti Thyroid drug.
When the thyroid malfunctions there can be some overlap in antibody readings - but Graves Disease treatment takes precedence - as Graves is considered life threatening if not medicated as the thyroid hormones keep building higher and higher - and putting undue pressure on the heart.
The treatment is with the Anti Thyroid drug Carbimazole or Propylthiousacil - ( PTU ) -
and the Propranolol - the beta blocker - will also help slow the conversion of T4 into T3 and help ease these horrible pressure symptoms - as well as try and ease the pressure build on her heart - as we must stop her T3/T4 levels keep rising.
Graves is an Auto Immune disease and as such there is no cure and all the AT drug does is -
buys your daughter some time - while we wait for her immune system to calm back down again - and hopefully her thyroid return to her normal ' set point ' without the need for any drugs and this current immune system attack - just a blip.
No 2 peoples journey with Graves is the same though we do know that stress and anxiety are common triggers and I think we spoke of this previously - and you were also waiting on investigations into her other health issues - so hopefully you have some further answers on these now.
Sorry - I should have reread your last post where i replied previously first - I'll do that now - in case I've missed omething -
Do you know how to find all you have written and all your replies - if not - just press the Profile Icon on the side bar on this screen - sitting alongside My Hub - Chat - Post - Alerts and Menu sub sections.
We will try and get the blood results that were requested by endocrinology as I believe this may give more detail although as I said, she won't be given an appointment date for some months. Our GP surgery does not allow us to access test results online through the NHS app although I believe you can pay a fee to get a copy. I will look into this so we know what we are dealing with.
She had a colonoscopy and gastroscopy done a fortnight ago and has had biopsies sent away for analysis but results take 8 to 12 weeks apparently. There was no mention of IBD or ulcerative colitis. She is due to have an NHS lactose and SIBO test in mid January.
Thank you - knowledge is power! As you can probably tell, our GP surgery is not exactly a helpful one but unfortunately we have no choice - it's back to postcodes where we live and there is no patient choice as I think there was at one stage.
Once on the AT drug there should be further monitoring of symptoms and blood tests every 6 -8 weeks -
as the AT will be semi-blocking her own new daily thyroid hormone production and as her T3 and T4 start falling back down into range the AT drug needs to be titrated down -
otherwise the risk is her T3 and T4 falling too far through the ranges with her then experiencing the equally disabling, if not worse symptoms of hypothyroidism.
Ideally we need to try and get her T3 and T4 maintained at around 45/ 50% through the ranges - neither hyper nor hypo - while we wait for her immune system to calm down again -
When metabolism is running too fast as in hyper type symptoms or too slow as in hypo type symptoms the body struggles to extract key nutrients through food - no matter how well and clean one eats - and these co factors of ferritin, folate , B12 and vitamin D is low in the ranges will be compounded health issues further than necessary - so suggest you arrange to get these run and we can advise where best they need to be in the ranges - as just being in a range somewhere, anywhere, is not conducive to being in the best of health to withstand whatever else is happening.
I wonder therefore if her campus surgery might be a better option as it reads you can't access the medical records or get anywhere dealing with your primary care provider.
The university must be informed anyway - as they too have a duty of care for your daughter and again, she would likely prefer someone there to talk things through with and presume there is some sort of student support / medical / pastoral / type of system in place.
Once on the AT drug hopefully the horrible symptoms that can also effect her mentally, emotionally and psychologically will be gone - otherwise - could / would she defer for a year until she feels more settled with a clear mind to focus fully and enjoy the experience of being at University ?
We will talk about it when she is back at the weekend to see what is the best way forward. We did think it best to stay with the hospital she has been with over recent years but maybe another hospital would be better ....
When I was diagnosed Graves back in 2004 I was monitored and dosed by the hospital endocrinologist team every 2 months orso -
Roll on to 2024 and I read on here of many delays in routine hospital O/p appointments with some GP's now taking over the ' seeing of the patient ' while they liaise with the hospital team and take instruction.
I guess it depends where you are in the country - and yes, of course it's a conversation and just looking at an easier route to getting what you both need out of what appears to be an overstretched system.
I also have one of those unhelpful GP surgeries. A few years back some of my thyoid test results were blocked so I couldn't see them after I complained (via letter to GP and practice manager) about under treatment of a potential thyroid problem. Previous to that I could see the results.
I realise your situation is different as your surgery isn't allowing you access (which I'm sure must be unlawful) but I just rang and asked and they emailed the results to me. Obviously I didn't mention the letter of complaint.
It may be worth you just asking at reception. If the GP has seen them you should be able to have access to them. At least worth a go?
It always feels like a battle doesn't it! I need to wait until my daughter is back from university this weekend and we can go into the surgery together - as she's 19, they won't speak to me despite the fact that she completed a form saying I can help her.
if I was your daughter I would avoid alcohol while she is being treated. I can’t really drink a lot of coffee now because I would be buzzing. I used to like a few glasses of wine but rarely drink now because of the way it makes me feel afterwards. It could be an age thing with me. I will have a glass of Buck’s Fizz on Christmas Day though 🥂
She doesn't drink alcohol or coffee anyway so luckily that's one thing that won't have to change for her. She does love a cup of tea though! Hope you enjoy your festive fizz!
She doesn't drink alcohol or coffee anyway so luckily that's one thing that won't have to change for her. She does love a cup of tea though! Hope you enjoy your festive fizz!
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