When I went to my GP for something I also asked them about the tremor I had. They just said it was anxiety although I did say that I was not anxious. A couple of weeks later I was at a 6 month neurological appointment- the neurologist noticed the tremor and said that she would advise a blood test.
The test came back and showed that I had Graves’ disease. Since then my thyroid has been removed and they found a microcarcenoma in the gland.
Luckily it was encapsulated so no further treatment.
Based on this experience I think GPS should be given a signs to watch for with Graves.
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Bloods should be retested 6-8 weeks after each dose change (or brand change) in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially with Graves’ disease
Ask GP to test vitamin levels NOW if not been done
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
If/when also on T3, make sure to take last third or quarter of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
It can offer a reduction in swelling, pain and discomfort associated with Thyroid Eye Disease. The maximum dose recommended by TEDct is 200mcg day (as it can be toxic above 400mcg). It is found in high doses Brazil nuts, but levels vary according to the soil composition. If you want to use food rather than supplements, have a maximum of 2 Brazil nuts a day, just in case (I think content per nut varies from 30-90mcg).
I knew about Brazil nuts as I work in Early Interventions in Psychosis and have been recommending them for 15 yrs . I know they need to be grown in Selenium rich soil. But I didnt know about Selenium for eyes so Thank you x
I did rake selenium tablets for 6 months and and was told by the Endochronoligist not to take it for longer but they suggested now Brazil nuts so having about 3 a day, Apparently that is equivalent to a tablet.
That doesn’t surprise me n the least. I had Graves back in 2012 - I saw a doctor in August, she rocked back on her chair, put her pen in her mouth, looked at me like I was some sort of weird specimen and said ‘I think you are needing your holiday’. We drive all the way to the south of France with me feeling feeling shocking and sucking Dr Bach’s Rescue Remedy pastilles and using the Rescue Remedy spray, came home three weeks later still feeling awful.
To cut a long story short, one Tuesday night I nearly killed myself in my car, saw doctor next day, had blood tests the next and by the end of the week I was being treated for Graves. Considering I was a text book case - I was maybe a bit old for Graves but I had all the other symptoms.
It wasn’t a holiday I was needing - I needed a decent doctor who could recognise Graves. I’m not sure it is that difficult to recognise - I’d say the doctor had written me off as a neurotic hypochondriac, an open mind and an interest in her patient was probably all that was required in her place.
I’m very glad they got you sorted out and you are on the mend.
Following RAI ablation in 2005 I'm managing lingering Graves, thyroid eye disease and hypothyroidism and my doctor knew next to nothing about this poorly understood and badly treated autoimmune disease.
I became vey unwell around 7/8 years after RAI ablation and spent over 2 years going around a very unmerry NHS merry go round with little resolve to my symptoms but we did find out that I as with a low ferritin level, and referred to as a conundrum.
I then purchased Elaine Moore's first book Graves Disease - A Practical Guide thinking maybe that this had returned, only to read of my current symptoms and learn Graves doesn't actually " go away " since it's an autoimmune disease.
Having failed to access both NDT and T3 through the NHS I am now self medicating and source my own thyroid hormone replacement and am much improved looking after myself.
You are not alone, there’s many posts about Doctors missing (and mis-managing) thyroid issues. My hyperthyroidism was missed for years, fortunately it was only ever mild.
Since it was picked up, any symptom I have is blamed on thyroid and I’m told to take it up endocrinology department. Delaying investigation for months on end.
I also have eye issues & The GP said he could see I have proptosis and he assumed endocrinology would be dealing with Graves eye disease....yes? I said is that likely as I don’t have Graves. He said he didn’t know & to speak to Endocrinology. They said thyroid not possible cause go back to GP.
GP say they don’t do eyes & I must self refer to emergency optician. I tried 3 places and they are fully booked & they won’t take a future booking as it’s strictly emergency. I was phoning weekly last year for over a month before I gave up!
I have seen an optician about one of my eyes which I thought was bulging and was very dry. He was able to reassure me it wasn't TED and gave me some gel eye drops to help but I still have trouble with blurred vision when I first wake up in the morning. I think this is something I will always have unfortunately.
Mine aren’t right but the optician says it’s blepharitis none of their treatments he’s given me so far is making it any better. I had problems with my eyes but TED was never diagnosed. I am sure they are staring and they hurt looking up down and to the sides but they are either really dry or pour water like crazy they look all puffy too. I’d rather it was blepharitis.
They say I have a mite proliferation 🤮 on the eyelashes I do hot mask & tea tree wipes every day with little improvement after two months now on antibiotics for it ☹️ Plus mask and less vicious tea tree wipes. Quite worrying. Some relatives got glaucoma but not very close ones at least one of grandmas siblings all the children went blind with it. They did that air puff thing so presume it’s not that. At least I can still see ok with glasses
It’s one the optician recommended HycoSans duo is that one ok? I used red hycosans which seemed ok I know there’s no soya in it but haven’t got the box with me. What’s the problem with the preservatives are they bad for Ted?
The problem with preservatives is that many of us become sensitive to them - even if we can initially tolerate them. Then you get into a vicious circle:
Put in drops because your eyes are uncomfortable.
These drops, while possibly feeling OK for a few minutes, worsen your eyes due to the preservative.
Put in more drops, which cause more discomfort, ...
Has anyone reccomended ‘The fighting Graves e book’ omg it looks so good...love to know if anyone has tried it. Have Graves and ted. On the lot carb and beta blckers.
Mindfully aware Good morning .. I think , at least in your case Your Doctor should be given more than a few signs to watch for .
I’d like to give him a .. rocket 🚀
He sounds like he went to the same medical school as mine did !
I also have Graves Disease though in remission 🙏
... only recently however , I had a TED flare up and was allowed to go to my GP Surgery to see a young Doctor .
I was in a great deal of pain and discomfort and was struggling for some time , before making the call to see someone .
She had a look and said she couldn’t see anything wrong ! ... sent me away with nothing
I sat outside In my car in tears .. and phoned a Private Hospital and got an immediate appointment .
I saw a lovely young Eye Surgeon who was very sympathetic and was not in the slightest bit surprised that the GP knew nothing of TED or Graves Disease .
He gave me Wonderful Eye drops and HYLO FORTE lubricating drops . My eyes were transformed after 1 day .
He also wrote a letter to my GP to say that I should get the two sets of drops whenever I need them
I’m so glad the outcome was good for you and hope that you are well and safe .
To be honest I wouldn’t dream of seeing my doctor for anything to do with eyes. Unless they show a serious interest in eyes then I doubt if they have much training in eye problems - a bit like the thyroid too ha, ha! I’ve got a very good optician and live in an area where opticians can make direct referrals to our local eye department.
Glad you got your eyes sorted out in the end. I can imagine your pain and frustration - I sat in the car and cried tears of anger and frustration when I was told I was needing a holiday.
To be honest I wouldn’t dream of seeing my doctor for anything to do with eyes.
Few GPs have the basic equipment to investigate eye issues. Even if, by some chance, they do have some understanding.
For that reason alone, you usually have to go elsewhere - opticians, or whatever options are available in your area. In at least some parts, opticians can directly refer you to ophthalmology consultants. Or, if more urgent, there are some emergency facilities at some eye hospitals.
I dint even think Opticians are the answer Ti Thyroid Disease eye problems either. A year or so ago I had a big flare up of my Thyroid eye condition .. I went to an Optician for help ( not my own ) as I was in a rush and couldn’t get an appointment .
they examined my eyes very carefully and for some considerable time
... and when I told him of my condition .. he said Oh ! I can’t see any sign of any TED or Graves Eye problems . 🙄
..... Ahhhhh !!
I think a Private appointment with a properly qualified Eye Surgeon is a good solution for anyone wanting a good result .
Exactly, they (opticians) are far more likely to be able to recognise an eye disease and know where to refer you. Of course logically speaking there are probably some useless opticians around but as you say, doctors don’t have the necessary equipment needed to examine eyes.
At least if you visit an optician you are more likely to get the correct treatment and advice than you are to be given antibiotic eye drops to shut you up and get rid of you.
Then again from comments made on here in the past you want an eye specialist who specialises in thyroid eye disease - not just any old eye surgeon - they all have areas of expertise be it cataract, glaucoma, vitrio- retinal and paediatric eye conditions.
Just and same problem a couple weeks ago - took myself to prof of endocrinology and immediately said yes yes you have ted but am not worried. So went straight to ophthalmology. Drugs incoming intravenously. Not happy so doing a complete gut re set...from something in line which is sooooo not me but can see it makes sense - called healing the gut - hope you are well.
After initially seeing a consultant about my dry eyes 25 yrs ago who said they were the driest he’d ever seen, eventually saw another one at Manchester Eye Hospital 2 yrs ago after going double sighted, for 3 minutes and she wrote to my GP that I have ‘ slight dry eyes’. She lied and fobbed me off. Just laziness. Been referred back by Rheum for eye plugs and been on waiting list a year. I despair!
I use eye complex 7 from Amazon which is lutein & zeazanthin. ling recommended supplementing and I found this does help. I use HycoSan Extra, but am going to try Hyloforte as you recommended. My eyes tend to be worse on a morning- dry and eyelids swollen.
Hi Buddy .. Lutein is very good for eye health and they certainly help me . I did buy HycoSan extra and they helped a little ... but found as soon as I used HYLO FORTE the difference was amazing
Instead of using one drop in each 👁 eye I use two and gently spread around outside of my eye also .. it’s like giving them a drink of water .. I only have to use them at bedtime and after my shower in the morning .
I’ve just had a look on Amazon and they do a HYLO night time too. I’m guessing you just use the ordinary one- white box with red graphics? When I last tried a night time drop I thought it very sticky and if I woke up early, vision was blurry.
Hyloforte are good too. I find that no matter how good the eye drops I am using are, I eventually I have to change eye drops. I’ve come to the conclusion that my eyes just get used to them. I always use preservative free.At the moment I’m using one of the Optimist eye sprays that you see advertised - not sure right now which one - when I saw my optician for an OCT scan recently and mentioned I was using them she sniffed and looked distinctly unimpressed and suggested HycoSan which I have used and like but at the moment the Optimist spray )which I have tried in the past and hated because with the best will in the world to me it smells like stale chip oil) is working well.
I suspect it is helped by the Omega 3 Algae oil capsules 250 DHA I’m taking every day (for my bones) because when they ran out my eyes dried out again.
My eyes were like that when my Graves was at its worst I used to get constant blurred vision caused by the dryness plus the double vision which was vertical.
When I watched the TV credits rolling, there were two of each line of writing one above the other and same with reading, I had two layers of print one above the other.
It was annoying because reading and TV were about the only things that an exhausted patient with Graves could do apart from sleeping.
In my case I think it was just that my eye muscles had been badly affected by the Graves rather than full blown TED. Thankfully I didn’t need referral to a specialist in TED. I had dry eyes before Graves and they are still very dry now,
I found ‘overdosing’ on preservative free eye drops worked best for me, even though my eyes are still very dry I don’t get the double vision and I can read pretty much for as long as I want to.
Hi, I had the same problem with my gp. Months complaining of tremors, feeling weak and weight loss. All dismiss. Last week I was in surgery for appendicitis. In surgery they noticed a heart murmur. Tuesday I got a call from dr saying I had Graves’ disease.
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