I found you all helpful when I was diagnosed, well after 12M on Carb I've been off since the start of the year
Prev result
TSH 1.80 [0.3 - 5.5]
T4 16.7 [12.0 - 22.0]
T3 5.4 [3.1 - 6.8]
Now after 8 weeks
TSH 0.30 ( can't remember she may have said minus before)
T4 17.5
T3 6.1
She wasn't majorly concerned as T4 and 3 in range but she did say on boarderline so could be that the thyroid is going the wrong way again, we wont know until the next 8 week test
I asked if there is anything I should be doing with diet etc and she says time of day of test, diet and so on doesn't make much difference. That is may be settling down since coming off Carb, to me I think it is quite a change from 1.8 TSH. Would staying on Carb 18M made any difference, I didn't tailor off I was already on the lowest 2.5mg so stopped from that.
I really hope it's not going high again :/
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kittyelen
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Yes, since answering your initial question I've been looking back at your progress.
Graves is an auto immune disease after all, and your thyroid the victim of an attack by your immune system having been triggered.
We established in previous posts the action of Lithium on the thyroid so, hopefully this may have been just a ' blip ' of coming off this medication, as your T3 and T4 levels were never high in the first place.
There are very many people on this forum who take a low dose AT medication long term, some take a smidgeon every other / third day / weekly, some just have some in the medicine cabinet as an insurance for any future ' blips ' .
Graves can wax and wane, over the course of a life time, stress and anxiety, the likely triggers for Graves, may occur again. and as with any AI disease, one needs to consider one's own way of dealing with these life stressors.
There is no need to have any invasive action such as a thyroidectomy or RAI thyroid ablation and the current forward thinking endocrinologist is pro long term AT medication but do believe some maybe up against hospital policy.
Do you have any current readings for your ferritin, folate, B12 and vitamin D as these to be at good levels to maintain your core strength and your overall health.
I feel the same, no health issues! Er apart from the odd day of feeling really draiiined
So maybe just one symptom but that could be from tiredness after work, I work part time but it is stressful atm with yearly price increases I deal with customers on the phones!
Never had those extras tested I would need to get a private one for those but worth looking into more.
This is what confuses me, I ask them does stress affect it, and the medical team always say actually it doesn't make a massive difference but from what you say it does?
I'm afraid mainstream medical do not have any answers as to Graves Disease and they don't have any solutions to this auto immune disease, other than remove the thyroid which can actually compound some peoples health issues.
I think I must have mentioned the Elaine Moore Graves Disease Foundation in a previous reply to you ?
I had the RAI thyroid ablation in 2005 and became extremely unwell in around 2014/5/6 from what I believe the consequences of this treatment - but that's another story - but this was when I thought that maybe that Graves had come back again, and read that it never went away.
So, yes, my learning curve is back to front to most peoples and like Humpty Dumpty I've put myself back together again as best as I can.
The Elaine Moore Graves Disease website is dedicated to Graves sufferers throughout the world as it is a poorly understood and badly managed AI disease.
The collective research and suggestions of more holistic, alternative treatment options is well worth reading along with strategies you may choose to adopt in the future and gives you some extra thoughts on life / work balance and relaxation techniques.
Are you due any further follow ups now ?
You can arrange private testing - if you go on the Thyroid UK website there is a list of companies who undertake thyroid function test and the vitamins and minerals - generally referred to as a ' thyroid ultra / extra ' or ' thyroid bundle ' and comprises of around 10/11 blood test from 1 venous blood draw.
You can also arrange a finger prick home testing for the basic TSH, T3 and T4 if you would find this helpful for yourself, if the hospital have discharged you, and your doctor isn't able to continue monitoring these three vital thyroid functions.
Thank you I will check the links out, my levels went normal quite quick on the meds so I was really hoping it is just a blip but I will look into things a bit more now. My Grandad had over active thyroid but I was told in those days they zapped it too much with the radioactive treatment that his then went underactive. My Dad said he would have times where he would get very busy with work and overactive, he was on medication after they zapped the thyroid too much! How are you doing now?
I will have another blood test in 8 weeks to follow up for TSH T3 and T4 and my endo nurse is really nice, she always calls me on time as agreed so follow up booked in. So luckily not discharged yet as it is too soon, I've only been med free since beginning of the year.
Yes, I have read the dose of RAI isn't as exacting as one might think it should be:
Ultimately with RAI it's a slow burn and eventually you become hypothyroid.
Interesting there, you see, another fact - as with Graves there is usually a genetic predisposition so there is yours.
i believe my Dad had Graves and think it burned itself out :
My Graves was only diagnosed 4 months after I was physically threatened and verbally abused by a man I employed as my assistant manager.
I wasn't asked anything at diagnosis, and only put these pieces together after reading that Graves can occur ' out of the blue ' following a sudden shock to the system.
Glad you have follow appointments in place, maybe if you ask, you may get the vitamins and minerals tested through this ' nice ' endo nurse.
I didn't think of that as the dose was so low anyway, I came off lithium over 7 months, so I would have liked the same approach but maybe over 2 months like you say every other day. In the grand scheme though would it really have made much difference? No point worrying about it now as I can't change it!
She did say she wouldn't actually put me back on meds if T3 and 4 still in range next time she said that's more if it goes way over range so at least she sounds like they would avoid meds unless really needed from future tests.
I asked if there is anything I should be doing with diet etc and she says time of day of test, diet and so on doesn't make much difference.
Your doctor is wrong about time of day not making a difference. Doctors usually just use TSH to guide their decisions about treatment. And of all three tests that are done in a Thyroid Function Test, TSH is the one most affected by time of day. See the following links discussing the circadian rhythm of TSH, Free T4 and Free T3 :
Past week I have been feeling the fatigue, it's like a really bad brain fog I work part time but I get home in the afternoon and just feel SO wiped.
I am really worried this means it is going high, I am due the next blood test on the 29th April for review start of May. I feel very deflated My last test was 22nd Feb so would it really change that quick as the results were fine then be it just borderline for I think T3 or T4
TSH 0.30 ( can't remember she may have said minus before) [0.3 - 5.5]
T4 17.5 [12.0 - 22.0]
T3 6.1[3.1 - 6.8]
No it's more the other end if it goes over range then that's into hyper, maybe it's just me being paranoid my other half has a bad cold illness atm I have no other symptoms so I assumed it may be the thyroid, fingers crossed it isn't then!
Well, yes, of course, my original symptoms were not typical of what we understand as ' hyper ' and I was exhausted with dry gritty eyes and it was the insomnia that took me to the doctor.
Put simply there are 2 Graves antibodies and just as there is a TSI - a stimulating antibody there is also a TR ab - a thyroid receptor blocking antibody :
So between the 2 of these antibodies you can experience both hyper or hypo symptoms as they vie for control there is also the ' middle ground ' when they pretty much cancel each other out and you may feel pretty much ok for a period of time.
If anxious speak with your doctor and ask and if he could run the blood test as that's likely the quickest route to getting a reading and if your levels have shot up, the endo appointment will likely be bought forward.
I think levels can rise quite quickly at times & your FT3 was high in range last test so it’s quite possible in a few short weeks your levels are over range.
You likely recognise if symptoms are returning. Do you have a fitbit or way to track heart rate. I find that it quite an accurate correlation in indicating where levels are high / low.
Will doctor test early than planned? If not do a private MMH test to check TSH, FT4 & FT3.
Just checked it is 64 but when I was high before I had not many of the main symptoms (Only ones I remember were feeling drained and going to the loo more for a number 2 lolz)
I am hoping it's just a bug, I will see how the next few weeks go if I get anything like skipped heart beats I will contact them if not I'll wait for the test.
Edit- I'm gonna check up on the finger prick stuff, I really want to get my vitamins checked
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My last test was 22nd Feb so would it really change that quick as the results were fine then be it just borderline for I think T3 or T4
Told to stop Carbimazole after only 5 weeks by Doctor is this right?
White cells drop after Carbimazole 
Stopping carbimazole?
Carbimazole and weight!
no improvement on carbimazole after 3 months
