I had my bloods taken on 09/12. Results are below with ranges.
I have been on Carbi for 6weeks. 5mgs daily. I am disappointed that my tsh is the same as it has been for the past 6mths with no increase.
Is this normal?
Tsh 0.05 (0.27 4.20)
Free T4 19.6 (12 - 22)
Free T3 6.1 (3.1 - 6.8
My TSH got stuck way down under range when I was hyper. Sometimes it is difficult to get it back in range - don't know why.
Thanks for your reply. How did you manage to get it back up? 🤔
I had RAI which sent me hypo. That got it up! Now I am on a combo of levothyroxine and liothyronine it is rock bottom again. Nothing to worry about. TSH is not a thyroid hormone. It is a hormone that stimulates the thyroid to produce thyroid hormones. Doctors get hung up on it and are all doom if it is low but it is the ft3 result that is most important.
Really, how did you find the RAI? I dont have graves, i have a toxic nodular goiter so it is the nodule causing the hormone imbalance.
My endo has told me on numerous occasions that tsh is most important and that if it doesnt get any better i will need RAI or surgery, i dont want either of those options.
I don't have graves either. I could not get balanced on carbimazole. Was down from 40mcg per day to 5mcg per day. Tried to come of twice but things got bad again. Survived my taking citalopram as well to plaster over the cracks as it were. The endos and gps I saw did not have a clue. Moved house to new area. Better endo and she suggested RAI. Don't regret it as I don't think carbs was the answer for me.
What was it you had if you dont mind me asking?
Your singing my song. Im also on citalopram. My anxiety has been unbearable since all of this started.
Were your ft3 and ft4 out of range or only your tsh?
It is 4 years since I had RAI and 10 years since I was diagnosed hyper. Don't know why I went hyper - no antibodies. No family history. The one thing I was doing was overdosing (by accident) on iodine for a number of years. I was taking a multi vitamin which gave 100% iodine and I was eating a healthy diet full of fish etc. FT4 was 44 when I was diagnosed. Once I was on carbimazole for a while FT4 sat around 15 but I never felt right - anxiety and panic attacks were a big issue. It has taken 4 years post RAI though for me to begin to feel I am getting balanced and that is only thanks to the addition of T3 to my levo.
God, sounds like you've been through a tough time.
My tsh was supressed after i had my daughter 5yrs ago but corrected after 9mths without treatment.
I had my son 10mths ago and my tsh dropped and never recovered ive had anxiety before but never like this. The panic attacks were awful. Do you recommend the RAI?
It was right for me. But I think everyone needs to consider their own circumstances.
I have had a TSH of 0.01 for over a year. Carbimazole has brought my FT3 as low as 10% through range (when I began to feel worse than when I was marginally hyper at diagnosis) but my TSH hasn’t budged. I also have a toxic nodule. The nurse specialist said it takes ages for TSH to respond and expects it to remain suppressed.
I was also advised that as it’s a nodule it will not improve itself. It’s possible for those with Graves (as it’s autoimmune) to find remission when treated with anti thyroid medication but not when the cause is a from a toxic nodule. From what I have read, this seems to be the case. Have you been advised similar?
I would still rather stay on carbimazole long term than have surgery or RAI which is what the consultant recommend at my first appointment.
PurpleNails thanks for your reply.
Your situation is very similar to mine then!
So have you been on the carbimazole for over a year then? What does are you on.
I wasnt looking for ground breaking results after 6wks lol but thought it have budged slightly but i take it this is going to be a long process than i originally throught.
Yeah i have more or less been giving the same info as you. My endo said you can be on carbi just now but in the long term you will need a more permanent solution ie RAI or surgery. I have two small kids and im not prepared to go down either of those roads at the moment.
Whats your next steps with treatment?
I have been looking at radiofrequency ablation have you looked at this?
Our situation does seem similar.
I have been taking carbimazole for a year, began on 20mg, then 10mg, 15mg, back to 10mg, then my FT3 trended up so I now take extra 10mg on the weekend. I also found propranolol had an impact, I have since learnt has an anti thyroid element and my level rose sharply when I was told to cease taking it. I shouldn’t have stopped it suddenly as I gave me migraines so had to go back on.
I have been told the same with regards to treatment. Hospital is recommending RAI. I could push for surgery but as I’m obese it’s not a good option. My children although older have complex needs so they would find the need to keep at a distance impossible to understand so neither option is ideal.
I have researched a little about radio frequency ablation but I haven’t requested a referral as I know the long distance I would have to travel for assessment, then treatment & follow up is not an option for me.
I was going to suggest your read my post on this thread about Radio frequency ablation, but I see you already posted!
healthunlocked.com/thyroidu...
I have taken one beta blocker in the past - propranolol. I hated it. I was actually more anxious because my heart was beating so slow i ended up in a&e, havent taken any since.
Yeah im trying to find as many people on here in the toxic nodule gang so i can compare treatment options.
I would travel wherever i needed to if it meant getting the Radiofrequency Ablation.
I just think if it does what it says why is everyone in our position not getting offered it. They should be doing it in more hospitals. The cost of a potential one off treatment vs the money that it would cost the nhs for RAI or surgery, not to mention levo for the rest of your life. Seems like a no brainer 🤷♀️.
Yeah i found that post and was messaging geolan privately. I messaged her today actually to see if she has been to her follow up yet and how she is doing.
I am hyper due to a multi nodal goiter and treated with Methimazole. My TSH has never risen above .02% in the 2 and half years since I've been treated.
TSH stands for thyroid stimulating hormone. Because we produce thyroid hormones in excess, there is little need for us to produce TSH. It's normal to have extremely low values. Look at your free T3 and free T4 values. As long as your thyroid hormones are under control, expect your TSH to remain low.
Thanks for your reply. Are you planning on staying on the meds or are they looking to treat you with a more permanent solution such as RAI or surgery?
They push everybody to undergo RAI, but I've decided to just stay on meds. If I ever do anything, I would have half of my thyroid removed. I have 2 nodules, both on the same side and that makes sense.
I was pushed into having RAI treatment - it was the worse decision I have ever made. It was done for their benefit (NHS) and certainly not mine. I was told I couldn't stay on Carbimazole for more than a year although I felt well on it. I had a multi nodular goitre, no auto immune. Almost two years on from RAI and I am still suffering hypo symptoms. Don't be rushed into anything unless you are having problems with anti thyroid meds.
Thanks Gingernut44 for your reply.
Thats the last thing i want is to get pushed into something i dont want.
I have bridged the RFA with my endo via email yesterday. I have an appointment tomorrow night so we will see what he says.
I have an appointment with my endo tomorrow night so can let everyone know the outcome.
How did your appointment go?
PurpleNails yeah it was ok. He said the main thing is im feeling better on the tablets and that the bloods sometimes take a bit longer to reflect that.
He has increased my dose from 5mg to 10mg.
He said nothing about RFA he doesn't know much about it, he more or less said its an American treatment and there isnt much evidence to say it actually works so he wouldn't write a report to my private medical to support me getting it 🤷♀️.
I have now been discharged to my gp so i will see her on monday and take it from there.
He clearly doesn’t know much about it then, NICE support its use.
I don’t know how it works with private health insurance only NHS.
Are you sure doubling the dose is required? Your FT4 & FT3 was upper part of range but not over. I’d want to monitor carefully to ensure is doesn’t drop too much.
Was this a private endo?
Yeah hes a private endo.
He is looking for my tsh to improve and i think he believes increasing the dose will do that.
I will see how it goes, if i feel worse i will drop the dose back again, the thing is everything i have read says this is only a temporary measure before you decide something more permanent.
He said it may resolve with tablets 🤔
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