Basically my opthemologist picked up on high thyroid antibodies 6 years ago, he requested my GP to repeat test every 6 months to keep an eye on my other levels, GP refused due to lack of symptoms. Opthemologist has run the tests every time I have seen him for this reason. Fast forward 6 years to September 2022, blood tests done and mri and then recieved an appointment for January 2023 from the opthemologist which was earlier than usual. I attended yesterday and his first question was ‘ have you started treatment for your Graves’ disease?’ Sorry what??? He said he wrote to my GP in September telling them of my sudden change of results and requested I was referred to the hospital and treatment started straight away. I have not been informed of this at all, there is no mention of it on my online records, I spoke to the GP in December for a medication review and nothing was mentioned. My opthemologist has now done the referral himself but is fuming that it has been ignored by my GP. He said that if I had suffered a thyroid storm I would of been in trouble because I wasn’t aware of the issue!
My question is can I request a copy of this letter sent to my GP? Who do I get the copy from? And should I make a formal complaint against the GP surgery?
sorry for the long post and thank you in advance.
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ZebraHx
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I would complain too, but in all honesty I wouldn't expect much acknowledgement / action or any sort of apology.
Once doctors accept responsibility for that sort of error they open to all sorts of problems.
Many say the lack of response of making a complaint is stressful, but if you feel strongly you may feel it important.
I had a similar experience. In 2014 a hospital ophthalmologist tested thyroid function & antibodies. Antibodies were negative but function was abnormal high - nothing was ever done. It was missed again in 2018 and wasn’t treated with antithyroid until very end of 2018.
Still having eye issue investigated now. Half the specialist assume I have TED (thyroid eye disease) and speak to me as if I’m fully aware & other say as I don’t have Graves antibodies (hyper from nodule) - I therefore I do not have TED. I’m due a orbit MRI later this month.
A year into treatment the endocrinologist asked me when I was diagnosed diabetic - I hadn’t been, so I’ve had that too.
I didn’t discover this until 2020 when I requested all my GP & hospital records & I briefly thought of making a complain but I decided against it as was in the past & I knew doctors would pass responsibility. This has happened to you recently so complaining now would make sense & may prevent similar occurrences.
- I decided to focus on monitoring my current results and ensuring I get appropriate treatment from now on.
I recommend you collect printed copies of your results to see what’s being tested & if you are being treated appropriately.
You are legally entitled to a copy of any part of your medical record. the hospital will have a copy of the letter & department secretary can send you a copy or see if hospital has a records department. Submit a application for a copy.
You can often set up access to GP records online. England are contractually mandated to provide other areas vary.
Have you been prescribed treatment such as carbimazole?
Hi thank you for your reply. I am phoning the hospital today to request a copy of the letters sent and to ask for me to be copied in on any future correspondence. It was my opthemologist that has told me to make a formal complaint, I just don’t know if it’s worth all the hassle, I agree that I am unlikely to get an apology from them or even see a change in the way they correspond with patients. When I spoke with the GP in December I was totally unaware that my blood results had come back abnormal and even though I have online access, the blood results from the hospital have not been put onto my record. What’s annoyed me the most is that the GP has put me on HRT convinced me my symptoms are early menopause ( which of course they could be) but never mentioned the thyroid issue could be the cause of similar symptoms.
At this moment in time I have not been prescribed anything just waiting for referral.
'even though I have online access, the blood results from the hospital have not been put onto my record.'
Unless things have changed recently, I think you'll find that hospital test results are not recorded on your GP records. You would need to contact the hospital to obtain them.
This would very much appear to be the truth in my experience. What sense does this ‘protocol’ make? Isn’t it reasonable that the patients GP is informed of the results of tests undertaken in hospital especially when the results need acted upon. It’s a huge gap in patient care. Arguably my original results twenty years ago should at least have given rise to monitoring. Even later when the results obviously showed hypothyroidism (TSH 17.88) still nothing was done for five years. It’s a nightmare service!
Presumably you have positive TRab / TSI confirming Graves (TPO & TG antibodies can appear with TED & Transient hyper)
A referral to specialist endocrinology could take months. Depending on how high your FT4 & FT3 are waiting for a specialist to “take over” care is dereliction of duty by GP. GP can liaise with specialist and commence treatment at time of referral.
Carbimazole usually 1st choice (PTU is alternative). Propranolol sometimes prescribed to relieve symptoms such as heart palpitations until carbimazole addresses levels.
Do you have symptoms? If not, you may not have seriously high thyroid levels. Doctors often go by low TSH.
Have you been given advice / treatment regarding eyes? -such as selenium, preservative free eye drops for example?
hi No I don’t have access to my blood results at the moment, I have just requested them this afternoon and I should have them next week sometime along with a copy of the letter that was sent to my GP. Once I have this information then I think it depends on what it says as to what path I take. I haven’t had any advice at all, I am already on visulXL eye drops due to dry eyes, I also have ocular albinism, which is why I was referred to ophthalmology in the first place.
The only symptoms I have are insomnia, fatigue, heat sensitivity, change in menstrual cycle and feeling irritable. Which after doing bloods my GP diagnosed menopause. Unknown to me he would of already had the letter from the hospital prior to this.
As soon as I receive them I will post the results. Luckily my consultants secretary couldn’t be more helpful and is forwarding t all and putting notes on to make sure I am copied in on everything in the future. Unlike my GP surgery who are currently stating they have no correspondence from the hospital for September even though it states on my medical record for the 1st September - seen in ophthalmology clinic ( ongoing episode) further action required ( ongoing)
My dry eye problem is always worse in winter anyway but has been made worse by suffering with blephritis for the last 5 months. Nothing is helping and one eye is really sore all the time. I haven’t been advised to take any supplements but I will look into it, like I say I’m new to this having only just found out so I can see it’s going to be a learning curve. I have learnt more from this forum in the last 12 hours than I have from so called experts in the last six months!
I recommend you take a Selenium supplement, 200ug daily, as this has showed to help in mild/ moderate Thyroid Eye Disease (TED) when taken in the first 6 months. Even if you haven’t had TED confirmed, it may help with your symptoms. Many people (myself included) take a maintenance dose of 100ug daily when the active phase of the condition has passed.
Preservative free lubricating eye drops are important, such as HycoSan or Hyloforte. If you experience light sensitivity wear sunglasses (even indoors if needed). If you have any eye pain, my TED ophthalmologist said to take ibuprofen (with food to protect your stomach). If you experience eye swelling, it’s worth using 2 pillows at night, to elevate your head.
I received great advice and support from TEDct, so if TED is suspected, do get their information pack. They run a telephone advice line, hold regular webinars and have a Facebook group.
So TED is closely related to Graves which is likely what your ophthalmologist is monitoring for.
Ted can cause dry / irritated eyes - features such as strabismus & sensitivity to bright lights common with TED as well as your pre existing condition.
If blepharitis is not responding quickly to treatment I would have thought your specialist would be investigating treatment for TED.
My advice regarding TED
TED charitable trust is a Informative site about TED & symptoms
Things you can do If you think you have TED like symptoms (if you don’t have active TED these remedies are also normally safe)
Taking a selenium supplement is said the help protect eye. 200mcg for up to 6 months. Then reduce to 100mcg. Can be brought over the counter. Bear in mind selenium rich food can take you over the maximum requirement.
*Preservative* free eye drops & wipes. Rotating different brands seem to help. Liquid versions for daytime & gel versions at nighttime.
I have recently been using ocufresh carbomer lubricating eye gel it a light gel so best of both worlds.
For when eyes are dry I use warm compresses (eg wheat bags, microwaveable gel masks). Very gentle massage toward lash line, can use fingertips or carefully with roller ball tool or gua sha facial stones.
Warmth & message “unclogs” the blocked Meibomian Gland (tiny glands along lash line) and allows lipid oil layer to flow. This protects eye and helps retains the water.
If swollen, inflamed & more painful, I switch to cold compresses.
If you like to moisturise near your eye area use water based clear gels not oil / cream. I did this as developed milia white spots round eye. I found the puffiness & swelling reduced when I switched.
Serious complications with vision or changes to eye appearance are very rare. Don’t Google and panic over worst case scenarios, they are always the most severe examples.
It can help to keep a photo record of eyes eg take a photo every 2 or 3 weeks. I put in an album on phone & “hide behind a cute kitty picture” (buddy195 tip 👍)
Many report TED triggered or worsened when thyroid levels are low / high or fluctuating. Try to organise frequent monitoring of thyroid levels.
If communication & pace very poor there are private options to support you own monitoring of thyroid function. Variety of option from a full complete picture to basic thyroid function. (Can be done via post / finger prick sample)
When I was under specialist I would have the team send out blood test request forms in advance & book my own blood draw at the suitable time. So depends on system being used & who will be responsible for arranging tests.
Initially testing should be every 6 weeks . Once stable medics will extend length, but if taking carbimazole or PTU you should be tested at least every 3 months.
Hope information useful - sorry if Information overload. Any questions you have keep posting.
Will the opthalmologist give you copies of his letters? Ask. When I have been referred letters are copied to me as well.
Did you ask your GP about this when you had the review in December?
To complain about the doctor, the first person to try is the practice manager. Others may have complained about your GP as well or maybe there's a problem with the filing system.
I've just checked the NHS website. Here's a link showing how to complain.
Thank you for your reply, I will contact the practise manager and see what the excuse they are giving for not following up. I am aware that the GP surgery is struggling to hold onto a GP for more than 6 months at a time and most of them that are there are locum doctors which is t helping the situation. I think it may be time to find a new GP but with how things are at the moment it’s proving difficult. Thank you for the link. Much appreciated.
It's worth complaining to find out what went wrong. It's very difficult for GPs they are incredibly overworked. More GPs are turning to locum work, more pay and less unsocial hours. This is bad news for patients as we never get to build a relationship with a GP - a very inefficient process. We need to complain to raise the visibility of these problems. Unfortunately, politicians of all colours don't care about the NHS, nor do most of the public.
Before you contact the Practice manager or make any kind of complaint, if there is any current information that is present on your online records, Patient Access (or whatever your surgery uses) that you feel is important or possibly relevant, get copies, screen shots or whatever. Just make sure you have this information.
From my own experience when I contacted the surgery after I had sent them a polite letter about their undertreatment of a possible thyroid condition, much of the information that I had previous access to had been blocked and after this I couldnt see my thyroid blood test results. Which made things more difficult for me.
This is a good general principle. Before any complaint or publically posting about something make sure you preserve the evidence, it invariably gets lost or they discover a reason to take it down.
Graves Disease is generally confirmed by positive and over range Thyroid Receptor Blocking antibodies in your blood.
If you wish you can get this blood test run yourself through Medichecks whose details you can find on the Thyroid UK website thyroiduk.org in the page listing private blood companies.
Medichecks also offers a basic TSH, Free T3 and Free T4 blood test :
Medichecks also offers a full thyroid blood panel which includes a TSH, Free T3 and Free T4 , TPO/ TgAB thyroid antibodies, inflammation, and ferritin, folate, B12 and vitamin D :
If you can afford to - I'd suggest you arrange the Graves antibodies and the fullest of all the thyroid blood panels as listed above as it is crucial that you also maintain optimal vitamins and minerals to support you through this first phase of whatever is happening with your thyroid.
Medichecks can also offer a nurse home visit to draw the blood for you which takes out the stress of the whole situation or some forum members.
I presume you are not on any medication nor supplements and an early morning blood draw suggested and ideally you fast overnight for any thyroid blood test just taking in water.
When with the results simply start and new post with the results and ranges and you will be advised of the next steps to take with your doctor, who may or may not accept these private blood tests but should force his hand to do something - depending on what is found.
Graves is said to be life threatening if not treated so you might like to talk this through with your doctor before you take measures into your own hands.
Have you any thyroid blood test results from your doctor including any positive and over range antibodies and has Hashimoto's thyroid disease ever been mentioned to you ?
Graves and Hashimoto's are both auto immune diseases that attack the thyroid and eyes and they both start off the same and can only be identified by which antibodies are found over range and positive in the blood analysis.
Whatever lotions, potions, drops and gels you use just please ensure all products are Preservative Free.
My consultant diagnosed me with blepharitis and continued to prescribe what my doctor prescribed - and I had to find out for myself through Moorfields Eye Hospital, that it wasn't that I was not cleaning my eyes properly but that I was being continually prescribed ointments and gels with preservatives that had exacerbated my symptoms.
Thank you everyone for all your help. I am working my way through all the help and advice, I am currently laid up with a lower lung infection so my brain isn't firing on all cylinders 😆
THe last time my GP did my Thyroid bloods was Sept 2019 and has refused since as he didn’t think it was necessary.
TSH receptor Ab: 1.5 iu/l (0.0-0.9) above high reference
Serum thyroid peroxide level 308.00 iu/l (<5.61) above high reference
TSH level 2.14 mu/l
Serum free T4 10.6 pmol/l
Serum free triiodothyronine level 4.3 pmol/l
Haemoglobin A1 c level 35 mmol/mol
The only other bloods he has done since is my iron levels due to constant anemia. But even that was picked up by blood donation team and not my GP! I can no longer donate blood due to a constant fight with my iron levels. If my iron is up then my ferritin is down or if that’s fine my folate is low, I take 800 vit D everyday as I haven’t been able to maintain that level for years and even on that my level is still only 47.
My head is a bit mashed at the moment but as soon as I have more info I will let you all know in a new post. Thank you once again.
OK - so looking at these results from 2019 you do have a positive and over range TSH receptor reading which I believe is a positive for Graves AI Disease and these antibodies are directed towards your receptor sites and can be either stimulating or blocking at any given time.
You also appear to have over range TPO antibodies which indicates you also have Hashimoto's AI disease which can happen when the thyroid is under such an attack from your immune system but Graves treatment should take precedence and is treated with an Anti Thyroid drug, usually Carbimazole or Propylthiouracil ( PTU ) to try and alleviate symptoms being experienced.
Your T3 and T4 levels look low and presume you were then, back in 2019, dealing with a blocking episode of Graves as with this AI disease you can experience extremes of both hyperthyroidism and hypothyroidism and it's a bit like being on a roller coaster of symptoms, with the extreme fatigue and exhaustion taking it's toll, both mentally, psychologically, and physically.
I visited the doctor in 2003/4 with my continued exhaustion but with new symptoms of dry gritty eyes and insomnia and within 48 hours called back in and learnt I had been diagnosed with Graves Disease and given a prescription for Carbimazole to tide me over while I waited for my Hospital O/P appointment to come through and told my treatment would all be at the hospital until further notice.
I knew nothing about Graves and told very little, and at my very first hospital appointment I was told I would be monitored and dosed on Carbimazole for around 15 months but due to have RAI thyroid ablation the following year as the AT dug was too dangerous to stay on long term, and I was totally compliant as I knew no different.
I'll leave my experience here for now but please read and keep the following links :
Thank you for that information, for the last three years my constant exhaustion, insomnia, weight gain and erratic menstrual cycle has been put down to chronic anemia, menopause and my EDS! Not once has my GP even suggested it could be my thyroid going bananas!
I Intend on going to see him armed with as much info as possible, once I e got rid of this infection as he won’t see me until I have!
Your reply has come through very fast and think I've added more information since as my laptop keeps cutting out and I've lost my reply several times so had to keep stopping and starting to get anything actually on the page here and printed :
Hi ZebraHx This reply gets complicated so just ... leave it here for (much) later since your brain is mashed . it's just to try and explain about how TRab work.
You thyroid may , or may not, have been "going banana's" during this time. here is why:
The way to know that would have been to monitor your thyroid function tests. (TSH / fT4 / fT3 )over that time, and compare results to any symptoms .
not monitoring these (at least annually, and more often if symptoms of hyperthyroidism or hypothyroidism were present) , when they already knew you had tested positive for TRab was ... erm ....crap "doctoring"
"positive TRab" tells them that your eyes could potentially have problems due to TED.
It also tells them that your thyroid MIGHT sometimes be stimulated to make too much T4/T3 due to Graves disease ~ the 'stimulating' TRab do this.
and ...since there are actually 3 types of TRab ( stimulating / blocking / neutral) ... it could SOMETIMES mean the thyroid is blocked from getting the message to make enough T4/T3 ~the 'blocking' TRab do this. (~ note~ This is a fairly rare form of hypothyroidism , with a different cause to Hashimoto's. It's not easy to test for, because most TRab tests can't tell the difference between stimulating and blocking TRab .. so you only know it's happening if the TSH/ fT4 / fT3 results confirm a very hypothyroid state and TRab are positive.)
TRab levels ( all 3 kinds ) fluctuate over time , and sometimes they can even balance each other out ....so (sometimes, rarely ) people with TRab can change between becoming hyperthyroid (very Low TSH / very High T4/T3) .. to then being euthyroid (ok ) then becoming hypothyroid (very High TSH / very Low T4/T3) and then back again... confusing everybody.
But this sort of fluctuating hypo/ hyper /hypo seems fairly rare, most people with positive TRab have 'stimulating' ones that domimate causing Graves, they become hyperthyroid (very high T4/T3). and then if they are lucky (after a year or two on antithyroid drugs to control the T4/ T3 levels) ,their stimulating TRab go away , so the cause of the high T4/T3 stops. and they stay in remission . (If they are not lucky , it doesn't stop, or it stops and it then comes back ,and then they either have to stay on antithyroid drugs , or have thier thyroid removed / destroyed ).
We can't actually tell from your 2019 TSH / fT4 /fT3 if you were 'a little bit hypothyroid' at that time ,or if your thyroid function was actually ok at that point , because we don't have the lab range for that fT4 test. (If it was eg[12-22] then 10 is obviously low , but some lab ranges are eg[7-14] in which case 10 would be absolutely fine) .
When blocking TRab are actually causing hypothyroidism , you would expect to see an unusually high level for TSH .. which you didn't have , it was 2 which could also be absolutely 'fine' . So my suspicion is that 'blocking' Trab were not causing a problem for you at that time and that your thyroid was probably doing ok at the time of that test. Perhaps you had some blocking and some stimulating that 'in effect' cancelled each other out.... you must have had some of one sort /or the other/ or some of both both in order to get a positive TRab result .
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
The presence of raised TPOab is actually quite common in nearly all cases of Graves disease. so i'm not sure we can assume that a positive TPOab in Graves disease means someone definitely has "Hashimoto's as well as Graves" they could just have Graves.
Graves is a poorly understood and badly treated auto immune disease - and everybody's journey with Graves unique.to them.
There is likely a genetic predisposition to Graves with someone in your family, maybe a generation away from you with a thyroid health issue and can be triggered by a sudden shock to the system, like a car accident or an unexpected death of a loved one or it can seem to occur totally ' out of the blue '.
Once triggered Graves can wax and wane throughout one's life as after all we are looking at an auto immune disease with the thyroid being the victim in all this as the cause is one of one's own immune system having gone haywire.
Some people's Graves burns itself out - others have ' grumbling Graves ' whilst others experience Graves rage and violent outbursts - it's a question of the degree of the symptoms being tolerated but it is seen by the medical profession as life threatening if not treated and I can only guess that in 2019 the Covid card will be played as your doctor / hospital have been remiss and your health issue not picked up on as should have happened and don't quite understand why with this positive TRab diagnosis nothing has been actioned.
You may find Elaine's section of complimentary and more holistic treatment options of interest and also her section on being more selfish with one's own time, doing and finding things that you yourself enjoy and finding ways to turn off and relax.
It would seem that some GPs have no clue of how to diagnose one of their patients who have clear symptoms of hypothyroidism.
Even when my TSH was 100, I was informed that I had no problems.
It is thanks to Lyn Mynott (who is the person behind this forum who began Thyroiduk in her garden shed.) that I have recovered my health.
When you have a blood test for thyroid hormones always make the very earliest appointment. It is a fasting test (you can drink water) but don't take thyroid hormones until after your blood draw. Thyroid hormones (levothyroxine for instance).
Once you have new recent results always add lab range which differs between labs.
The TSH here is higher than a healthy TSH -which is around 1. Although medics don’t look to treat until above range.
The thyroid function levels are showing low (hypothyroid) here, although they may be within in the lab range. The FT4 is below some commonly used ranges.
You had high TPO antibodies then, so if your results were like this for a few months - levothyroxine replacement should have been considered.
You do have positive TRab, (accepted a positive marker for Graves) but this measures stimulating, neural & blocking antibodies.
The stimulating part is what causes the hyper Graves. You likely have a mix of both.
With autoimmune thyroiditis, the immune system attacks thyroid and causes gradually reduction function. HOWEVER in a severe “attacks” the immediate damage then releases thyroid hormones stores cause a hyper high reading. The high reading is temporary & isn’t from the over production. TPOab signifies autoimmune thyroiditis (Hashimoto’s). but also appear in Graves.
This transient high/s usually occurs early on but can occur months & years later. You may find the recent high levels settle, but if stimulating antibodies (Graves) are causing an increase production of thyroid hormones it will remain high.
In some cases levels swing unpredictably, this is managed by taking a high dose of antithyroid medication to prevent any natural production & then restoring hormone levels with levothyroxine replacement (block & replace).
hope you feel better soon with lung infection.
800iu vitamin D is extremely low supplement level. You can self supplement higher levels.
Many with thyroid issues need much higher maintenance dose all year round. eg (1000iu daily) Under 50 nmol is deficient & GP obligated to treat, usually with loading doses of 25,000iu fortnightly.
A optimal level is over 80nmol (100nmol better) “Better you” (red bottle) spray is good option. contains K2. A co factor which directs calcium to teeth & bones where you want it and away from blood vessels where you don’t.
1 spray = 1000iu you can start with 3x sprays.
Magnesium another co factor.
Shocking your doctor refused to monitor thyroid - and ignored instruction of specialist. Especially with abnormal antibody results.
Thank you I am working my way through everyone’s advice, I need to be able to confront him with as much as I can due to his slack attitude. I have this infection but he won’t give me antibiotics as he believes the body needs to learn to fight these things on it’s own! I’ve had it for three weeks now and he still isn’t budging! His comment about the specialist in 2019 was ‘ he’s an opthemologist not a a GP what would he know about thyroid issues! These Co sultanas need to stick to what they know,’
This is what I am dealing with so I intend on being armed with as much info as possible when I next see him.
Thank you once again it’s amazing how helpful everyone is being.
I had the same issue with my hashimotos results. I was told it was clear, fast forward 18 months and in sheer annoyance at my GP I requested my medical records be printed off and also electronic access via "patient access app". Reading throught it I found my hashimotos diagnosis and a range of other things they'd just ignored and I now have to deal with.
You just have to go into your GP reception with ID and they have to sort it for you. The electronic app gives access to reports, letter, blood results etc so you never have to take the GPs word for anything again. Best of luck
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Making a complaint against a hospital
TSH 0.02. I feel good. Should I be bovvered?
Should I self medicate?
can my GP charge me £30 for a copy of one lab blood result?
I got T3! I got T3! I got T3! I got T3!.... ... OK, calm down, and ... breathe! :-)
