First post here and very grateful to have come across the wealth of information on this site.
I have thyroid ultrasound and levels checked yearly and they always came back normal until this year:
4.08. 2023
TSH: 0.26 (0.4 - 4.5)
T3: 1.20 (0.6 - 17)
T4: 8.60 (0.8 - 19)
8.09.2023
TSH: 0.07 (0.4 - 4.5)
TG: 32.6 (1.8 - 111)
Anti-TG: 1.3 (0 - 4.5)
Anti-TPO: 37 (0 - 80)
20.09.2023
fT3: 4.20 (1.8 - 4.2)
fT4: 1.64 (0.8 - 1.9)
9.11.2023
TSI: 1.65 (<55)
I have RAI scan (scintography) booked for 29.11.23 and follow-up appointment with endo the next day. My sister has Graves and hers was awfully mismanaged by NHS and I don't want to follow the same route. I live in Greece and have private healthcare but, as on other occasions, feel I need to be informed and play an active role in my own care. So, my question is whether treatment for Graves (or rather its resulting hormone imbalances) should be commenced when T3/T4 levels are still in range? I suppose that they could be out of range by now or this could change at any time? I have a few symptoms on and off (shaky muscles and tachycardia - below 100bpm though) but I feel these symptoms are hard to discern from normal anxiety which I've had for years and the more I think about Graves the more I tend to think everything might be a symptom.
Any thoughts about the above are very much appreciated. I am terrified of being overmedicated or worse and really need to be informed.
Thank you all so much.
Written by
ElleBee99
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Your last thyroid levels (FT4 & FT3) are in range.
Your antibodies appear negative too.
The uptake scan will tell you the function level throughout thyroid, so the results are going to tell you what’s going on.
Low TSH can occur for many reasons. If FT4 & FT3 rise above range or high & symptomatic you will need medication, but antithyroid medication for low TSH isn’t a good approach. Often doctors look at low TSH and assume Graves.
Graves is a poorly understood and badly treated auto immune disease that tends to only get diagnosed when the thyroid, or eyes, start to be affected.
Everybody's journey with Graves is unique to them - but stress and anxiety seem common triggering factors - there is no cure, and all the Anti Thyroid does is ' buy time ' while we wait for your immune system response to calm down.
There is generally a genetic predisposition and since your sister has already been diagnosed you will likely be better placed to understand first hand some of the health issues you may experience.
The most recent research we have suggests the longer the Anti Thyroid drug is prescribed the better the long term outlook for the patient.
We also have research suggesting RAI is the worst treatment option and quite why it is still often the first and only treatment offered in what we consider a health care setting is somewhat disconcerting.
Do you have current TSH, Free T3 and Free T4 results and ranges to share with forum members ?
The most all encompassing website of all thins Graves and Auto Immune is, I believe, that of Elaine Moore elaine-moore.com - though I only started reading about my Graves 10 years too late for me and when very ill with what I believe the consequences of RAI thyroid ablation I had for Graves some 10 years earlier in 2005.
There are alternative and more holistic treatment options which I guess depends on the severity of symptoms being experienced but we are looking looking at an AI disease for which there is no cure and the solution to simpy flip the patient from hyper to hypo - simplistic - especially if one is tobe dosed and monitored on just TSH readings which seem common place in mainstream medical.
It is essential to be dosed and monitored on both T3 and T4 readings to restore the patient's health and well being - to give the patient back to their ' you ' - and maintain T3/T4 hormonal balance.
I so appreciate your reply! I feel better 'armed' having all this vital and hands on information that is shared here. My sister had a horrific time with Graves, working in the NHS, in ICU, during the height of the Covid pandemic, and none of the doctors monitored her properly as she rejected the RAI, which was, as you correctly mentioned, the first and what would appear the only line of therapy they would support. She was put on too high dose of ATD and wasn't monitored for 7 months in which time she turned hypo. I don't want this to happen this me, hence I am researching everything I can.
I will certainly look into the site that you mentioned above and, following my uptake scan and endo appointment, I'm presuming that if medication is to be prescribed he will first check my T3 T4 levels as up until now they have been within the norms - and post the results here.
Again, thanks so much to everyone here. Feels a lot less lonely now...
When metabolism is running too fast as in hyperthyroidism or too slow as in hypothyroidism the body stuggles to extract key nutrients through food, no matter how well and ' clean ' you eat.
Non optimal levels of core strength vitamins - ferritin, folate, B12 and vitamin D - are common and these can compromise your health issues further - so suggest you get these run and we can advise as to where these need to be to help support you through this first phase of Graves - just being in a NHS range somewhere - is not enough - and some ranges are too wide to even be sensible.
Ideally your TSH, Free T3 and Free T4 should have already been run alongside the Graves Antibody reading -
There are 2 AT drugs in the UK - Carbimazole is generally prescribed, and if pregnant or unable to be tolerated - Propylthiouracil - ( PTU ) is offered.
The anti thyroid drug simply semi-blocks your T3 and T4 rising any higher and slowly your readings should fall back down into the ranges and the AT drug titrated down accordingly - and your symptoms relieved.
It takes regular monitoring of bloods, and dose adjustments of the AT drug to finely tune your levels as blood tests tend to run a couple of weeks behind symptoms, especially if your Graves still raging and hard to anticipate.
Some patients are treated with Block and Replace - this is when the AT drug fully blocks their own new daily thyroid hormone production and T4 - Levothyroxine is added back in on the prescription so their T3 and T4 do not fall out of the bottom of the ranges causing unnecessary, additional, ill health.
Keep a list of symptoms being experienced and discuss with your endo - as the more imput you offer the better understanding you will both have as the best way forward.
Your sister experienced, as do many, being kept on too high a dose of the AT drug for too long and then likely see your T3 and T4 fall too far through the ranges and you experience the equally disabling symptoms of hypothyroidism.
Hopefully your Graves is just a ' blip ' and the AT drug does the trick - but get copies of those links so you are prepared for the conversations that may come your way.
I hope you sister is now through this ordeal - and able to continue with her career.
Neither you nor your sister are alone with all this - this is a patient to patient forum and we are here to support each other through and give back and hopefully achieve better thyroid health care for everybody.
P.S. Register with your surgery for online access to your medical records - if you haven't already - as then you can view your history and blood test results at your leisure and if you wish - share with forum members here who will explain anything to you that is not clear.
I cannot thank you enough for your reply and the amazingly informed information it contains. I am afraid I only trust the medical profession up to a certain point and feel I must be proactive in my own care.
I have started taking a good multivitamin and plan to get selenium and acetyl l Carnatine.
My last readings in August were:
B12: 356 (211 - 911)
Vit D: 36.4 (30 - 100)
Folic acid (folate): 17.5 (3.5 - 14.4)
I suppose I should ask for these to be rechecked along with the other core vitamin you mention, ferritin?
As yet I have no eye symptoms, although I have had dry red gritty eyes on and off for years - should I make a precautionary appointment with ophthalmologist? Then again I don't think there is much that can be done as far as precautionary measures go.
Again, I am so grateful for the time and care you have taken in replying and hope that I too, once I am as savvy (!) will be able to support others going through this strange journey.
We don't recommend any multi vitamins as they generally do not contain top graded A1 supplements and generally bulked out with non essential agents such as chalk.
Generally speaking if looking at a range we need to maintain a good 50% through -
i now aim for a ferritin at around 100- folate around 20 - active B12 75++ ( serum B12 500++ ) and vitamin D at around 100:
So, your serum B12 needs supplementing to around 500++ and your vitamin D to around 100 - but your folate ' looks ' pretty good.
Yes - ferritin is equally important - can ' look high ' because of inflammation -Crp -
but start a new post when you have new information - so all forum members can support you -
It's best to treat and track each vitamin and mineral seperately so you can see progress - or not - and adjust your doseage - I'm not too ' hot ' on the best supplements but if you go to the sub-section headed up ' vitamins and minerals ' on the top right hand side of this page - you will find there many recommendations and suggestions.
You need to start supplementing with B12 - these are littlle sub-lingual nuggets and vitamin D and with D we also need to take MK7-K2 so to direct the supplement to our bones and teeth - rather than our arteries and heart.
I'm not sure any optician can help you at present, your eyes may not be an issue - but please just check that any lotions or potions you use for those those dry, gritty, eyes are Preservative Free - even those prescribed.
If you get lost on the forum, or can't find your orginal bio and/ or posts - simply press the Profile icon top right on this screen and this takes you back to all your questions and replies.
Conversely if you want to read anybody elses's Profile and their thyroid journey simply press the Profile icon alongside their name in any message/reply they have made on the forum.
The Chat button which looks like a paper plane is for Private Messages as we are not allowed to talk openly about any specialist we may have seen or want to recommend / or not -
and we are also not allowed to openly talk about where some forum members source their own thyroid medication.
Thyroid UK - thyroiduk.org - is the charity that supports this forum and where you can find much more information on all things thyroid - including a list of both hypo and hyper symptoms experienced and private blood test companies who can run the relevant blood tests if your NHS doctor is not able to
Thyroid UK also hold a list of recommended endos/ doctors and thyroid specialists - both NHS and private - and you just need to contact admin at Thyroid uk for this list if you see this being of use for you.
P.S. It would help us help you better if you complete your bio as that's where we first look when replying to new questions as it's easier reading facts all in one place than reading several posts to find out and remember exactly where you are in your thyroid journey.
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