Hello everyone, Just a brief history first.Diagnosed with graves disease and TED in 2018.Tried titration and block and replace for 4 years.Chose to have a total thyroidectomy in June 2022.Been feeling well and having no problems, apart from low calcium which looks to have resolved itself( one more blood test to check).The ENT surgeon tested T4 6 week post op and it was 18 and tested again October 2022 and it was 16.9 which he was happy with.Think range is(10-18.7).
Discharged by endo in September 2022.
Been taking 100mcg levo 5 days a week and 50mcg 2 days since I was on block and replace.
Went to GP on 20 Jan 2023 with an unrelated issue.(Stiff neck on one side and sore tender skin up one side of my scalp and round under my ear, also a lump behind my ear)Couldn't really see anything so ordered blood tests and said she'd check my thyroid aswell.They've come back.Only thing to stand out was serum alanine aminotransferase 73(10-49) and I nearly fell off my chair when I saw TSH.It did say 19 but when I looked the next day it said 10.35 (0.38-5.5) .Also tested free T4 19(10-18.7).This blood test was at 12.30 midday and I had taken my levo in the morning.
She has referred me back to endo.I have a follow up with a different GP on 9th Feb as lump has not gone and can discuss bloods then.
I have emailed my ENT about lump behind ear as he has not yet discharged me and happily he has agreed to see me in clinic.I await an appointment.
I have just got my monitor my health results back.I did bloods at 7.30am monday.Last levo 24 hours earlier and fasting.Results as follows:
TSH 15.9 (0.27-4.2)
FT4 17.4 (12-22)
FT3 2.9 (3.1-6.8)
Obviously I can see FT3 is low.I have received appointment with endo but it is only a telephone one on 27th Feb and he will only have GP bloods to look at.
Should I do the full monty bloods with vitamins to check they are Ok before doing anything else?What about that gene test.? Is it expensive?Just want to do as much as I can myself instead of waiting around.Chose monitor my health as it is an NHS lab and thought they would take more notice of it.
Sorry about long post.I'm a bit of a rambler.Any advice gratefully received.
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Hello, thankyou for your reply.Up until a month ago I was taking 1 tablet a day for calcuim(400mg calcium also contained vit D3 6.7 ug and vit K1 30ug).I am currently taking high strength vit C 1500mg per day and 220ug selenium per day.That is all I have taken.Will take test Tues as I take 50mcg thyroxine mon and Fri.I was definately confirmed as having graves in the beginning, they did TSH receptor Ab 25.7 (0-0.9)
Thyroid Peroxidase Ab 6 (0-34)
Would they be the right ones?
I had those done in 2018 by endo.
Do I need them again, or would I need to know if they are still high?I just want to make sure I have the right ones done as it is a bit expensive.Thanks again.
me again, just to mention that I have been to GP regarding sugar levels.I find if I have alot of sugary food I can't sleep well, am constantly running to loo during night with a full bladder and generally feel a bit funny.He tested my urine with a dipstick and found nothing and did the fingerprick blood test with the machine but again nothing out of the ordinary.I thought I might be starting with type 2 diabetes.I have never had these problems before.
sorry me again.The reason I am on levo100 mcg 5 days and 50mcg 2 days is that during block and relpace I was on 100 mcg every day but started getting a migraine every week.I was slightly overmedicated so that's why levo was reduced.I also started propranonol 20 mg 3x a day as a migraine preventative which I am still on.I weigh 64 kg.
I am taking amitriptyline for migraine prevention(since 2014) but it seemed to lose its effectiveness.I daren't stop the proprananol incase the migraines come back.It also helps with the jittery feelings I get.
Well the jittery feelings could well be because your whole body is trying to recover from the thyroidectomy and AT drug and not yet optimally medicated.
Yes, I can understand that.I am still taking things steady, it must be a big shock to the body to have such an important organ removed.It's bound to throw things out of kilter.
Well I think you look very hypothyroid so your core strength vitamins and minerals will have likely nosedived through the ranges -
So yes - we need ferritin, folate, B12 and vitamin D up and maintained at optimal levels in order to have the best chance of converting well the T4 Levothyroxine - which is pretty much inactive and a pro hormone into the active hormone T3 that runs all your bodily functions.
It is essential that you are dosed and monitored on your Free T3 and Free T4 readings and these 2 vital hormones need to balanced in the ranges at around a 1/4 ratio T3/T4 :
We generally feel at our best when our T4 is up in the top quadrant of its range at around 80/90% as this should, in theory, convert to a T3 at around 70% with a reading in the middle/upper 5's.
Once optimally medicated I would expect your TSH to be down at the bottom of the range:
I was going to ask how you are feeling but it seems a little pointless as other health issues are now compounding your health issues.
A fully functioning working thyroid would have been supporting you with trace elements of T1. T2 and calcitonin plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100 mcg.
T3 is said to be around 4 times more powerful than T4 :
I has RAI thyroid ablation for Graves Disease and when my thyroid finally gave up my cognitive function became severely compromised and I thought I was also dealing with dementia.
Once I added in a little T3 - trying to replace that little bit lost - It was as though a light was switched on in my brain - and then my pilot light worked again and my memory and thought processes amongst other things massively improved.
Some people can get by on T4 - Levothyroxine only :
Some people find they need to add back in a little T3 to their T4 prescription so to restore natural thyroid hormonal balance :
Some people can't tolerate T4 at all and need to take T3 only :
Whilst others feel improved taking NDT which contains all the same know hormones as that of the human gland and derived from pig thyroids and the original treatment used successfully for over 100 years.
Unfortunately since around 2000 treatment options for thyroid hormone replacement have systematically been reduced and currently your primary care doctor can only prescribe T4 - whilst in previous years he had all the options in his tool box when T4 didn't restore hormonal balance, well being and health.
Thankyou for your very informative reply.I think I will order the vitamin test to check those in the first instance and go from there.Do you think I need to test antibodies or would there be no point doing that at this stage?I want to make sure I order the best test for my situation.
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