Graves,eye disease lack of nhs help

[Squirtle55]

I have overactive graves diagnosis.. with thyroid eye disease. The endo prescribed 5mg carbimizole and the ophthalmologist 20mg prednisolone. I feel grim, legs swollen. GP will only give 10 mins phone consult and hopeless. Next endo apps at hospital 28 April. What to do?

[PurpleNails Administrator]

Is the prednisolone helping with TED symptoms? Were you given eyedrops?Recommend to take Selenium supplements?

5mg is a very low dose of Carbimazole were you started on a higher dose?

Was Graves confirmed with positive TSI or TRab antibody results.

What are your results. Carbimazole must be carefully managed to keep FT4 & FT3 in range. Being too low will likely worsen TED. Drs tend to go by TSH alone. So this happens to many when they start carbimazole & they report TED was worsened or triggered when levels low.

A separate ophthalmology specialist should be treating your eye issues GP & Endocrinologist monitoring your thyroid levels. How often are you monitored.

[Squirtle55 in reply to PurpleNails]

No one monitors me….who should?

[PurpleNails Administrator in reply to Squirtle55]

Initially your GP until your specialist can take over. Often the blood test form can be sent to you directly and you can attend the GP practice to take samples & results can be discussed over phone. This should be every 6 weeks until consistently stable when starting carbimazole.

As specialist appointments tend to be substantially delayed these days. GPs should really be liaise more closely to ensure regular monitoring but we’re seeing many, getting “left to it” once referral submitted and not getting looked after by either specialist or GP.

Did your specialist arrange any initial checks? I had this prior to attending for first consult. It should usually including full thyroid function, full blood count, liver function, antibodies. Ideally Folate,ferritin & B12. I also had glucose, cortisol, Tissue Transglutaminase Antibodies. urea and electrolytes. Ideal vitamin D should also be tested but NHS has never tested & I paid privately.

Drs are on alert of abnormal results. If a result it just within range then doctor will say “fine, normal or ok”

As Drs & labs tend to test TSH alone & there’s many reports of people who’s FT4 & FT3 are still being in range being put on carbimazole solely for low TSH.

Do you have any results? Always obtain a copy of test results. Either online access or a printed copy with ranges, so you can check what’s being tested (and what’s not) then you can check your own progress, be proactive and an advocate for your own treatment.

[Squirtle55 in reply to PurpleNails]

GP refuses to provide…I will get on to them.

[PurpleNails Administrator in reply to Squirtle55]

See if your practice offers online access as you can then view results as soon as available and also gives access notes & letters so very helpful to track health condition/s.

Be sure to request full access and historical record as initially a basic coded record is given which doesn’t always include notes, letters & test results. Practice has 1 calendar month to set up access from request.

If you are in England practices are contractually mandated to provide online access to your medical record. (Wales & Scotland are different) but if in UK you are legally entitled to copies of your own medical record. Practices should not be refusing, but doctors are good at distracting from requests. They also must NOT charge.

First off do not ask doctors for results (as they don’t like patients knowing). Ask via practice reception. Before I had online access I would contact reception and explain I would like a copy of blood test for xx date or from xx date and say I will collect on eg “Wednesday” give them 2 or 3 days or so to print.

Staff might say they need to check if you can have results but if they have been dealt with “read & filed on system” or sometime staff don’t have time to print there & then. So doing it this way with advanced notice means they have no excuses & can not refuse to provide.

Occasionally I would get questioned, eg why I needed them & would I understand them? You don’t have to give a reason but to avoid debate I would say “for my records” & yes I could understand results, just want to keep track of my results.

I also found if my husband phoned and said my wife will be collecting her results, he was always told yes of course - she’s entitled to them & they would always be ready!

GP practices don’t have automatic access to hospital records. You can request copies of hospital records, either directly from the hospital department which requested them. Again approach the department secretary not dr. They should be able to post copies. If there’s any obstruction there are other ways to request copies of hospital records.

Don’t accept verbal or hand scribbled notes - insist on a printed copy with ranges (ranges vary between labs so essential).

It’s a shame we have do our own follow up and ensure we get the “care“ we should be given automatically.

[Squirtle55 in reply to PurpleNails]

I saw endo in January and next appointment end of April. A letter from endo reports as follows “recent blood test TSH 2.17. free T4 14.2, previous TSH receptor ABs 4.27. WBC 11.00”. What does this mean? Blood test of dec 1 showed TSH < 0.01 FT4 30.4 TSH receptor antibodies 5.58 and letter says the right orbital appearance in scan in October showed extra ocular muscle enlargement, oedema and orbital proptosis. Left eye normal. It was after this I was started on 10mg Carbimizole…last letter after this reduced to 5mg says I coul opt for propylthiouracil but warns can affect liver.

[PurpleNails Administrator in reply to Squirtle55]

TSH < 0.01 FT4 30.4 - was this 1st abnormal test? The TSH is suppressed and FT4 is high by most ranges. Doesn’t look like FT3 was tested.

TSH receptor antibodies is TRab. 5.58 its quite high and likely positive by most ranges we see. This is accepted as confirmation of Graves, but the test measures both blocking & stimulating antibodies & its possible to become hypothyroid with high Trab results.

TSH 2.17. free T4 14.2. Your subsequent results are nearing Hypothyroid. The TSH would be in range but isn’t reliable. The FT4 or 14 is quite low by most ranges. Again FT3 not tested. We would need the lab ranges to interpret accurately. Ranges vary between labs.

How long between tests as it’s a considerable drop in levels for a low 10mg dose.

WBC. 11 is this slightly above range? sometimes WBC is monitored as Carbimazole can rarely cause it to drop. My results were similar & always had above range WBC - Drs didn’t know what to do about it.

Do you feel carbimazole is causing adverse reactions?

[Squirtle55 in reply to PurpleNails]

I need to read up more on all this I can see. Doctors receptionists very obstructive but will persevere. Gave me some big form when asked for online access to my medical records. Neighbours get it why can't I? have no idea what is causing me to feel ill but think steroids with ovetactive thyroid drug seems counter intuitive. I haven't seen any afv8cecre carbimozole and steroids together though prednisolone leaflet warns in several places that GP shpuldcadvise..hasn't a clue of course. I am not any more "over active" than my partner .A lot less so in fact. The relaxed one. And put i on lot of weight and hamster cheeks. Partner is always thin and lost weight. So am confused by diagnosis all based on one thyroid blood test result. So much to learn but time for bed. Thanks so much. Will absorb all replies and advice before getting in touch with private specialist. I hope I am posting this in right place. My first day on here...

[pennyannie]

Hello Squirtle and welcome to the forum :

So, I too have Graves Disease but had RAI thyroid ablation back in 2005 and now hypothyroid - not that I'm recommending anyone take RAI - but I knew no better back then.

Do you have your diagnosis there and van you share the TSH, T3 and T4 results and ranges with forum members and can you see which antibodies have been listed as over range and positive ?

For Graves they generally show as a TSI ( a thyroid stimulating ) reading or maybe you can see a TR ab ( a thyroid receptor blocking ) antibody reading ?

Have you any more recent blood tests plotting your T3 and T4 as you are now taking a very low dose of 5mcg Carbimazole an anti thyroid drug.

Has this relieved your initial symptoms ?

It reads as you now have water retention on your legs, what has the doctor suggested ?

I just had complete exhaustion, dry gritty eyes and insomnia which were all resolved in around 2 weeks with Carbimazole.

I wasn't prescribed anything for my eyes, but have learnt that any lotions, potions or drops need to be preservative free.

Graves is an auto immune disease that tends to attack the thyroid and / or the eyes or both.

You might like to read around Graves, as it seems poorly understood and you'll be better placed knowing a bit about it yourself.

If you feel like it I found the Elaine Moore Graves Disease Foundation website very well rounded learning tool , especially the sections on learning about myself and my triggers.

Graves is said to be a stress and anxiety driven AI disease and can occur out of the blue for no apparent reason.

It can be triggered by a sudden shock, like a car accident or unexpected death of a loved one, and there is likely a genetic predisposition with someone, maybe a generation away from you with a thyroid health issue.

P.S. You might like to look at the Thyroid Eye Disease Charitable Trust - as they offer a referral service to TED clinics throughout the country where you may find the level of help better as most clinics, I understand, also have an endocrinologist on site so the treatment maybe better ' joined up ' ?

[Squirtle55 in reply to pennyannie]

It’s been a great deal of nhs not coordinating…at first I reported double vision to GP…sent me directly into Whipps Cross hospital …they diagnosed a stroke. Two weeks later the head of stroke team called to say he disagreed with diagnosis. Lots of out patient tests..all showing I was well, then a few nodules on Thyroid..not considered important…eventually a blood test showed deranged thyroid readings. Sent to another hospital trust withendocrinologist who put me on Carbimizole 10 mg. Came out in bad skin rash but no one to tell as GP closed over Xmas. Eventually taken off them by GP. Saw endocrinologist who said thyroid readings returned to normal and to lower carbimizole to 5mg and wean off Prednislone but then saw Opthalmologist who asked I stay on 20 mg. Of Perdisolone. I have felt unwell cramps legs swelling and tingling…GP ten minutes on phone only several times..no idea what to do. Can’t get message to endo at hospital as secretary did not report my messages to him..then left. I insisted on new thyroid blood last week at GP…results awaited. Eyes worsening. Feel powerless to get help.

[pennyannie in reply to Squirtle55]

So your initial symptom was double vision .

Graves Ophthalmopathy can run independent of Graves AI thyroid disease which generally presents with ' hyper ' type symptoms, though there again, my symptoms were total exhaustion so it can all get a bit confusing.

So you had no symptoms of an increased metabolism, faster bowel, unable to sleep, anxious, nervous, increased appetite though loosing weight, fast heart rate, palpitations, or feeling you had run a marathon though sitting on the sofa,

The rash was likely caused by the Carbimazole, it's a known side effect, but there is an alternative AT drug - Propylthiouracil - PTU for short :

Do you have these " deranged " thyroid readings - results and ranges ?

What have you been diagnosed with and what was the medical evidence ?

I'm so sorry as it sounds like you have been left in limbo and this only exacerbates one's health issues.

[Squirtle55 in reply to pennyannie]

Yes feel abandoned so v good to find you all online by chance. I have set out readings I have from endo in reply to other posts..hope u can see? I wasn’t sleeping well but that not unusual…with partner who was howling mad during pandemic and always v anxious. I had not lost any weight…put it on f anything…was happy on my own..now swollen out by steroids …. Plus had to sell my holiday home I was in in Norfolk and we had water leak that damaged our Main home. Been more of a nightmare than usual. It all now beginning to make sense…

[Squirtle55 in reply to pennyannie]

This is all very helpful and gratefully received.. I shall contact Charitable Trusts for more joined up action advice. Am thinking to go privately. I have to rely solely on partner to get me to appointments as obviously can’t drive and now told by nhs am v vulnerable to omicron etc so don’t use public transport. Have drops for eyes but they rarely gritty so don’t often use. I wasn’t given thyroid blood test results bye endo at hospital. Just showed me on screen and said they expected results to show return to normal even though had only taken Carbimizole for two weeks..I also have trouble reading but have glasses with prisms in. I will try ringing endo secretary again but in past no one answers. Six weeks ago left massages but no one called back. GP has just left me with all this swelling..I shall contact them again as now also urinary incntinence…guess body trying to reduce water in body.

[pennyannie in reply to Squirtle55]

I too have experienced months of " non action and no reply " to my letters and telephone messages and my experiences were back in 2017/18 and long before Covid :

RAI - is referred to as a " therapy " for Graves Disease :

It is actually Radio Active Iodine that is in either a pill or liquid form and you drink or swallow it and it burns out your thyroid in situ and is also taken up to a lesser extent by other glands and organs in the body and the long term consequences include a risk of cancer, though no one tells you any of this, and for me, my health is a lot worse now than my initial health issue.

I still have Graves Disease, it's an auto immune disease, after all, and the RAI caused my thyroid eye disease and if I wish any Quality of Life, I need to buy my own full spectrum thyroid hormone replacement as routinely the NHS only prescribed T4 which is inert and which your body needs to be able to convert into T3 which is the active hormone your own thyroid automatically produces to kick start your metabolism.

The safest treatment for Graves Disease, if that is what we are looking at, is long term anti thyroid treatment, like Carbimazole or PTU, but sadly it is more expensive and time consuming and NHS need to be reducing O/P waiting list times and not adding to them.

My treatment was back in 2005 - and I was discharged double quick out into primary care as it is believed hypothyroidism is easier to treat and better managed by your doctor than in a hospital setting.

Just for reference : ncbi.nlm.nih.gov/pubmed/306...

pubmed.ncbi.nlm.nih.gov/338...

[Squirtle55 in reply to pennyannie]

Goid to know nhs drivers..I mean targets ..I will be v cautious and demanding in future.

[Squirtle55 in reply to pennyannie]

What is RAI ablation?

[pennyannie in reply to Squirtle55]

See above answer -

[pennyannie in reply to Squirtle55]

Are you wanting me to reply to something ?

I'm getting alerted to your post but can't see anything new written to me to reply to ?

[Buddy195 Administrator]

Hi, As PurpleNails and pennyannie have mentioned, TEDct is a valuable charity to offer help and support. I got a great deal from their advice line, info packs and online forum. They helped me find a TED specialist ophthalmologist in my area, which was a godsend as I’d seen lots of eye doctors who knew little about the condition up until this point. Just checking you are supplementing with selenium (200ug a day) as this can help with mild/ moderate TED (although don’t exceed as 400ug can be toxic)

My top tips are to sleep on 2 pillows, wear sunglasses to reduce light sensitivity, use preservative free eye drops liberally (eg HycoSan or Hyloforte), take regular photos of your eyes (I keep mine in ‘hidden’ on my phone) to show the specialist & monitor your condition yourself, look after your overall eye health (I supplement with lutein & zeazanthin). Above all, do not overdo it on Google images….which often show worse case scenarios. Please be assured, my eyes now look nothing like they did 18 months ago.

[Squirtle55 in reply to Buddy195]

I think my thyroid condition triggered by huge stress during pandemic and by v stressful partner…now trapped and dependent on partner.

[Squirtle55 in reply to Buddy195]

Will check out TEDct thank you.

[Squirtle55]

Have bought selenium 100ug…take now and then…will up to 200 as u do. Taken on going photos…but although eyes look fine, and each one has good sight, the right eye pupils cannot move to give coordinated eyesight…so get two views. as I understand it the eyes not coordinating because swelling reduces space in eye orbit for muscle to work. Is this right? My whole face and neck plus body swollen…much more than when diagnosed..assume as result of prednisolone. I feel steroid working against thyroid and predisolone leaflet cautions in several places against taking withCarbimozole…Ineed a coordinated nhs, GP who will hel and means to ask consultants. I try v hard to be positive…swelling and cramps preventing me walking. Live life on sofa.

[pennyannie in reply to Squirtle55]

Buddy195

[Buddy195 Administrator]

Stress can worsen thyroid conditions, including TED and many members report that a period of stress triggered their condition or flare up. I know it’s easier said than done reducing stress in your life and it seems that you dont have a supportive home life Squirtle55. Rest assured, the online community here will try to offer help and support.

I’ve found that practising mindfulness helps reduce my stress. Try to follow a guided meditation to help you relax; there are lots on YouTube. I’m a fan of Mark Williams and have his app on my phone.

Have you been offered a Diuretic to help reduce swelling? Have you tried magnesium to help ease cramps? (Epsom salts in the bath are soothing).

[Squirtle55]

Thanks Buddy….GP did not offer diuretic..or have an explanation only anther blood test end of next week to see what might be cause of tingling, cramps, numbness. Frankly GP is hopeless practice…but I deserve better and will persevere . I shall contact GP Monday when they open. Seems body want to shed water as I keep wetting my pants…sorry to say..and found from rmerly loose clothes now tight…all makes sense..so body knows better than GP it seems. And when I see friends on line it reduces my stress. All v helful

[SlowDragon Administrator in reply to Squirtle55]

Urinary incontinence is extremely common with low B12

Insist on testing B12, folate, ferritin and vitamin D

Always get actual results and ranges

Test thyroid levels early morning, ideally before 9am

Going to pay for private specialist too

Before considering booking any consultation we always recommend getting full thyroid and vitamin testing done

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis) or with Graves’ disease

Recommended on here that all thyroid blood tests early morning, ideally before 9am

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

[PurpleNails Administrator]

What is RAI Ablation?

RAI = radio active iodine. It is a single treatment taken as drink or tablet. The substance is absorbed by the thyroid and some of the thyroid cells are destroyed (ablated). It reduces the function of the thyroid preventing the levels being overactive. It often results in permanent hypothyroid. Doctors view hypo as easily treated in primary care. RAI is an easily administered treatment and therefore main option suggested by doctors.

Graves can go into remission usually carbimazole or PTU is trailed for around 18 months before considering irreversible treatments to permanently control hyper. Doctors sometimes try to rush this but do your research and only proceed at your own pace. RAI is not recommended if you have TED.

Others opt for surgery or if stable on carbimazole you can remain on it long term. I’ve been on carbimazole 3 years & intend to continue lifelong (I have nodule no autoimmune)

[Squirtle55]

Thanks I don’t want body irreversibly damaged if can control though drugs. My body has in past been good at recovering from ailments… if given correct support. Will contact endo…or try! Going to pay for private specialist too. I know I should not have to but nhs is …..here.GP simply has no experience in this and one admitted that to me. I am feeling more informed already thanks to this forum.

[PurpleNails Administrator in reply to Squirtle55]

TEDct will likely be able to help with specialist for TED. As for endocrinologist - before seeing specialist have a full thyroid function test. You might have to arrange privately. Then you will have all the information you need. The test can be done via post & finger prick sample. You don’t seem to have FT3 tested to this might be best way forward. Popular choices are blue horizons or medichecks for a private test bundle. (Function, antibodies & nutrients). Perform test earlier in week and post away from weekend to ensure not held up in post.

See link for other options & discount codes.

thyroiduk.org/help-and-supp...

You can also email thyroid UK for list of recommended endocrinologists or this can be requested via form on website.

thyroiduk.org/about-thyroid...

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