Details of blood tests since August 2021 shown. I was diagnosed as Hyperthyroid at that time with Graves confirmed by TSH ral, not tested since. Testing for vitamin levels at that time were all normal. My GP requested I have a blood test done earlier this month following a request for a repeat prescription. I take 15mg Carbimazole daily. T3 was not marked to be tested. As can be seen there was a considerable change in the results between May and August 2022 (I was not notified about this and the results have only appeared on my medical record in the last week) with a bit more change following the most recent test completed. No testing for vitamin levels was done but I have been informed my liver and kidney function is good but my cholesterol levels have become extremely high, 9.8! Obviously it is very pleasing that I appear to be much more ‘normal’ now. However, is such a major change in three months between May and August 22, usual? I am currently feeling dreadful. Exhausted as my sleep is very intermittent and quite often have to rest after breakfast in the morning. I am also very breathless after climbing a flight of 12 stairs, have cramp in both hands when I wake up and still have a noticeable tremor in my hands. Walking home quarter of a mile from town or the nearest bus stop involves several stops for rests. I have two nodules on the right-hand side of my thyroid, largest currently 1.5 centimetres, I have been told they are both most likely benign and was discharged from the ENT department in January 23. I have not been told if the goitres will continued to be monitored in any way. Holding down a full-time job at the moment is impossible, I work every other day in the week if I can.
I have an appointment with the Endocrinologist in two and a half weeks and before the blood tests had been planning to discuss how I was feeling at the meeting. I had been anticipating a discussion about RAI or a Thyroidectomy before the blood tests as I will have been taking Carbimazole for 18 months. RAI concerns me greatly as I have had laser treatment twice for holes in the retina in one eye, fortunately caught before it detached completely. I don’t have TED as far as I know but do have gummy eyes most mornings with a fair amount of grit in them so maybe?
What do people think? Is it possible the Graves is still causing me issues despite the TSH and T4 showing as in what I have been told is the normal range? I hope this all makes some sense and isn’t a stupid question. I get so bogged down trying to make sense of things on the different websites and hoped a kind person could explain things to me more clearly and tell me to calm down and stop worrying if necessary.
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BeeOrchids
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I too had laser treatment in both eyes at Moorfields City of London 20 odd years before I was diagnosed Graves - and wasn't given a reason for the " Why " when I asked - just a shrug of the shoulders with the suggestion being that there might be inflammation build up on my spine.
On no account should you be even offered RAI - if push comes to shove I think a thyroidectomy the cleanest and most precise of the radical options.
Quite why RAI is even still considered a treatment option in a health care setting is beyond my understanding :-
The most recent research is suggesting that the longer the patient stays on the AT mediation the better the option for the patient and i think it's all a question of the degree of inconvenience being suffered and the skill set of the endo in adjusting your AT medication alongside your fluctuating T3 and T4 levels as this auto immune disease continues to play havoc with your own thyroid function.
Graves can still be playing football with your thyroid and all the AT drug does to try to block any further thyroid hormone being released so trying to alleviate symptoms and not make things worse.
By blocking your thyroid hormones your T3 and T4 will drop back down into range and then it's important that this AT drug is titrated down as otherwise your T3 and T4 keep falling through the ranges and you experience the equally disabling symptoms of hypothyroidism.
too high a T3 and T4 for you and you'll experience ' hyper ' type symptoms -
just as too low a level of T3 and T4 for you and you will experience ' hypo ' type symptoms.
When metabolism is running too fast as in ' hyper ' or too slow as in ' hypo ' your core strength vitamins and minerals will likely nose dive through their ranges as your body will struggle to extract key nutrients through your food and low ferritin, folate, B12 and vitamin D will compound your health issues even further.
" Normal ' is somewhere in a range - it does not mean optimal and we need optimal :
Some ranges are too wide to be even be sensible and again with thyroid it's all about where you feel well and where your T3 happens to be to give you back your health and well being.
Hope that helps a bit :
Always use Preservative free eye drops, and gunk :
Hope I've answered some questions - but maybe raised some further ones ?
PS. I'm with Graves and post RAI thyroid ablation in 2005 and managing lingering Graves, thyroid eye disease, and hypothyroidism and now self medicating and much improved.
Thank you so much for responding so quickly and yes it’s lovely to hear from you too. I was hoping you would reply as you’ve been so helpful previously.
That is extremely helpful, my main worry has been the RAI issue which I had been planning to post about. I now have a clear message I can relay to the endo when I see him early next month. I will hope for the Carbimazole to be adjusted suitably when I ask for this.
Just another thought - if you can pop the ranges in your above detailed grid that you use to track your TSH, Free T3 and Free T4 readings you will be better able to see your % of each through the ranges :
Then set up another grid for your ferritin, folate, B12 and vitamin D levels and ranges :
I know I’m so cynical but dare I say it - it’s still being offered because it is cheap and quick - and it gets you off the hospital’s books and out to your doctor who may or most likely may know very little about how to treat thyroid patients and also probably because none of the endos advocating it have ever had it done to them or their relatives.
I'm one of those patients and post RAI thyroid ablation and having to self medicate to claim back any QOL - but I don't want to ' colour ' other people thoughts who are already in the system and reliant of some level of medical intervention and prefer to present research papers, now we have them.
Graves is stress and anxiety driven and we have to try and find a course through and work with those in the system that doesn't cause more alarm and upset and research papers are not personal.
I think it comes down to hospital guidelines as I never saw the same endo twice in over 2 years - they just rotate in and out - 4-6 months at a time so never see anything through to fruition and just follow the guidelines set by the hospital - and of course encouraged to reduce O/P waiting times rather than extended them as with everything and everybody, especially now it is fully backed up.
I have found the care from my GP practice much better than the endo I see. Pleasant man but I find there is no real rapport between us. He specialises in diabetes not thyroid issues so I think I am not that interesting to him. At least I seem always to see the same person though. The GP practice are amazing and when I was first not well used to ring me to check how I was. I can always get appointments with them the same or next day if I need to.
My other reason for not being keen on RAI is I am a pet owner and worry my cats could be affected.
There are many reasons not to have RAI thyroid ablation -
I now can't think of one reason to have RAI - as the patient :
It is a slow burn and is also taken up ( to a lesser extent ) by other glands and organs within the body and now read there is a definitive link to cancer and around a 25 year window from ingestion for any potential long term consequences, so far !!
It is a quick easy fix for the hospital and financially the cheapest option :
You can read further on the Elaine Moore website - though think I read these depressing details when I started researching Graves 10 years after RAI when very ill and after finding no help through my surgery and hospital.
I thought maybe that Graves has come back - and purchased Elaine's first book - Graves Disease - A Practical Guide - only to learn it never went away !!
It is a poorly understood and badly treated AI disease and we do need to become our own best advocates and just hope the hospital leaflets are now truthful and the risks of RAI openly discussed and yes, I'm likely writing this in cloud cuckoo land - just now !!!
Its good to see research papers. Back in 2011/2012 when I had Graves there were some but they were difficult to find and not all that many around. I found the information on the extended use of carbimazole interesting. When I was diagnosed it was a case of treatment for a year and then it was RAI or I suppose in certain cases a TT.
I was treated at a big (and highly respected) teaching hospital and like you in the whole year I was being treated, other than the clinic nurse who weighed me, I never saw the same endo twice.
I met someone I knew from the school gate and we were talking about my first endo visit - I happened to mention I wasn’t all that keen on the endo I saw - I felt that if my husband had been with me the endo would have spoken to him rather than me - anyone the lady I was speaking to who also had thyroid problems and was treated at the same hospital said ‘Oh don’t worry about that, you’ll never see him again’ and sure enough I didn’t!
On one occasion when I asked to have my vitamin D tested I was told ‘I don’t know why it’s become fashionable to want your vitamin D to be tested, if you can prove to me there’s anything in it I’ll test it for you’ - next appointment I went back armed with the information I needed but alas he’d moved on.
I knew Graves had a stress link to it so not wanting to sit at home worrying about relapsing and then being given RAI I went to see my GP and asked if the hospital could insist I had RAI? No, if I refused to have it could they refuse to treat me? The answer to that was another no so I went off and relaxed
I should add that I gave up begging doctors to test things they didn’t want to test - plus I had never ever had nor was I ever likely to have my T3 tested - so I now organise my own home finger prick testing via Medichecks, Blue Horizon and City Assays
Thank you for responding and the other message after. Graves was confirmed in August 21, my GP rang and told me testing had confirmed it along with the Hyperthyoidism. I take 15mg Carbimazole each day. The dose was put up to that from 10mg following the May 22 blood test. The endo rang me in July 22 and I said I wasn’t feeling too well then and he agreed I should have another blood test early August which I did. I was told he would let me know the results but that didn’t happen. My fault for not following up, I thought no news is good news. Re vitamins, I take a Selenium tablet each day, a Biotin tablet (obviously not before blood tests) and a cod liver oil capsule with vitamin D.
Your extremely helpful reply means I can go to my next endo appointment and push for vitamin testing and suggest the Carbimazole dose be adjusted. It’s on 2nd March and having gone so long I am sure I can cope until then.
The dose was put up to that from 10mg following the May 22 blood test. The endo rang me in July 22 and I said I wasn’t feeling too well then and he agreed I should have another blood test early August which I did.
May 22 result already showed Ft4 was dropping too low
can’t believe they put dose Carbimazole UP after that
If anything it might have been reduced
ALWAYS get actual results and ranges
Very unlikely endocrinologist interested in doing vitamin testing
I would STRONGLY recommend you get FULL thyroid including Ft3 and vitamin testing BEFORE consultation
List of private testing options and money off codes
Thank you very much. Will follow up and organise another full testing as suggested. Yes to guaranteed delivery, if I’m paying for the test myself another few pounds won’t be an issue.
I am so relieved to find out I am not being a complete wimp about this. Living on my own I am inclined to brood and get things out of proportion sometimes so I do really appreciate your help and advice
If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.
Just another thought - do you know how to reread everything that you have ever written on this forum ?
Simply press the icon top right on this screen that reads More - and go to your profile page.
Conversely if you wish to read any other forum members profile page simply press the icon alongside their name in anything they have written and you can see and read their history.
thanks, I knew how to check my profile but not other people’s. I’m feeling much more reassured after yours and other members replies. Now sort out private blood tests before seeing the endo next month
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