I am a long-term sufferer of Graves disease, i have had a total thyroidectomy and over the last 15 years, I have sacked 2 endos for not being good. I saw my new endo who is a thyroid endo and not a diabetes endo before covid 19 started he increased my levo and told gp the ft3 needs to increase its too low at the bottom range or just below. So bringing you up today my gp wants to lower my meds due to my tsh being lower than the range here are my levels. I take 150 micrograms of levo daily and gp wants to lower it to 125 daily.
FT4 23.6 pmol/L 10-22
FT3 4.4 pmol/L 3.1-6.8
TSH 0.06 mlU/L 0.30-4.50
My questions are i am sure the endo told me because i have graves i can have my tsh as low as 0.030 and my FT4 can be slightly over range am i remembering this correctly from my endo.
Should i lower my meds
What do other gravesers think of these results
Thanks in advance Scott
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miravgraves
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Low TSH isn’t uncommon when on replacement & after Graves. Being previously being hyper can lower TSH for extended time (sometimes permanently)
High FT4 is best avoided but you likely need a higher FT3 to feel well (over 50%).
What are your nutrients like. Have folate, ferritin, B12 & vitamin D been tested recently. When optimal it can improve conversion.
Recommend tests are arranged for early in morning, fast overnight, delay dose until after draw. Cease biotin supplements prior to test 3 days unless on very high dose. Is this how you test?
Hi Scott I won’t comment on your levels as others have said same as I’d say. However with regards to your GP testing. Last year I requested D level and it was refused (by lab not GP)! This year I said to go I was concerned I may have a toxic level as was taking 10,000 units a day and they DID test for me and my level was 200, a bit high. I said I’m aware that my body cannot rid itself of excess vit D and don’t want to make myself ill. I also said I needed an up to date iron panel and B12 as it affects thyroid function, and I told her I was paying for a private doctor to help me with thyroid meds as NHS has let me down so much! It worked, we have to be quite forceful, but there’s no reason to not do as you request. Good luck keep trying! 💜
Personally, I think it depends how you are feeling. Earlier this year I convinced my gp to up my levo from 100 to 112.5mcg, in order to try to raise my free t3. Not a big increase, but boy it took some arguing! My free t4 went from just within range to just over range, similarly my tsh. I argued that my tsh wasn't completely suppressed and I wanted to continue with the 112.5mcg. Gp grumpily let me get on with it! Interestingly, my free t3 hardly increased at all. However, I have recently been having more hyper symptoms which I have to put down to the high levo, and have reduced back to 100mcg. Of course that means my free t3 will drop... so I'm going to see a private endo for a t3 trial (there is zero chance of this on nhs here).Have you read this:
I get Liothyronine on the NHS from my gp. GPs can prescribe it but only after an endo has initiated it. Some practices Hv a drug protocol that excludes prescribing T3 but not all do. If the gp can’t or won’t prescribe it the endo (private or nhs) can prescribe it and the hospital pharmacy can then post you a script every 2 or 3 months.
But it’s typically over a years wait for referral to NHS endo
Here’s link for how to request Thyroid U.K.list of private Doctors but also list of recommended thyroid specialist endocrinologists who will prescribe T3
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations
gp wont do vitiam tests and ft3 is a no no tried before, test are done first thing and i dont take levo before hand so about 33 hr because i take my levo at 10pmish before bed, will have a look at list
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
STRONGLY recommend getting FULL thyroid and vitamin testing before even considering booking any consultation otherwise consultation is waste of time and money
ESSENTIAL to maintain optimal vitamin levels for good conversion of Ft4 to Ft3
Test full thyroid and vitamin levels at least annually
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Testing options and includes money off codes for private testing
"In a study evaluating tissue function tests before total thyroidectomy and at 1 year postoperatively when using LT4, it was found that peripheral tissue function tests indicated mild hyperthyroidism at TSH <0.03 mU/L and mild hypothyroidism at TSH 0.3 to 5.0 mU/L; the tissues were closest to euthyroidism at TSH 0.03 to 0.3 mU/L [48]."
Reference 48 is:
Ito M, Miyauchi A, Hisakado M, Yoshioka W, Ide A, Kudo T, et al. Biochemical markers reflecting thyroid function in athyreotic patients on levothyroxine monotherapy. Thyroid 2017;27:484-90 ncbi.nlm.nih.gov/pmc/articl...
Nice recent research!
Essentially as a total thyroidectomy patient your TSH on Levothyroxine mono therapy should be 0.03 to 0.3 mU/L.
Hello there,I'm in a similar situation to you.I have graves,thyroidectomy June 2022.I was OK on levo only but was refered back to endo this year due to TSH over 10.He has slowly increased my levo since January and I am now on 100mcg Mon-Thurs and 125mcg Fri-Sun.In January my Ft4 was 17.4,so not bad,but my T3 (which I tested myself) was 2.9(3.1-6.8)
The levo increases put my FT4 up 34 at one point but my FT 3 is only still 3.8(Ft4 is now 27)
I am over range on Ft4 and ache all over.I did send an email to endo in September asking to lower my levo as I don't feel great,and also if he could consider me for a trial of T3 on the NHS as it appears I am not a good converter.He has ignored it and I haven't heard a dickie bird from him.I had a NHS blood test yesterday and did my own medichecks on monday.When I get these back I will post on here for advice.Depending on results I am thinking of having a consultation with Roseway labs will a view to trialing T3.Honestly he has just tested TSH(no ft4 or ft3) yesterday so I hope he is happy with it and sends me on my merry way.I'll then try to sort myself out,hoping the GP just leaves me to it.It's a right pain isn't it?I will at least be able to say I asked and was ignored,so I had no choice but to go it alone.Hope you get sorted.Best wishes to you.
i had below range or just in ft3 for years until i saw a thyroid endo so i feel for you, its just the cost of blood test and ft3 that stops me from doing it myself
Yes,the cost I'm a bit worried about.I'm having to do blood tests anyway because my GP and endo only test TSH and that is no good for me.Sometimes I just do the 3 thyroid hormones and that works out about £30.This time I have done those plus vitamins,minerals and some others.I got a good deal for £60 odd on a black Friday deal.My vitamin D was low last time I did it earlier in the year so I want to see if it's still OK after supplementing.The reason I'm thinking about Roseway is it's much cheaper than paying for a private endo consultation, and also if they need to see blood tests I have already done them.I can just about afford the prices mentioned on here for T3 from them especially if I can get the ones to cut into 4.I am also not confident going rogue and sourcing my own.I would prefer to be overseen by a professional and with help from the forum I would feel better.T3 might not be my solution but I think at this stage I need to give it a go.I haven't got it in.me to fight the NHS though I know it is the preferred option.I'll know what to do by the end of this week hopefully.I didn't have my thyroid out to be kept on an above range Ft4 for the rest of my life.Hope you find your solution.
How I sympathise. Lost my thyroid to Graves in 2009. Have had a continuous battle with thyroxine levels. The doctor is constantly telling me I'm over medicated. My endo, who to give her her due, seems to knows what she's talking about, says that some people function better at higher levels and has written to my GP giving ranges above the normal range. She works a lot on weight . Because she has kept my levels at the top of the range, I have lost weight. All good. Good luck
I’m in a similar position as my GP uses the nice guidelines as iron rules and therefore: low TSH = lower the t4 dose. Such little regard is given to t3 that they don’t even test unless instructed. It’s the active constituent produced in normal thyroid function that makes you tick and feel healthy. T4 just hangs around waiting to be provoked into t3. My understanding is that without a thyroid gland there is an incomplete loop in the process of making t3. Like you i have no thyroid due to RAI post graves, my tsh is through the floor, T3 is mid range and T4 is upper end of range. My TSH is low so the doctor lowers the T4 because he doesn’t care that my T3 isn’t high enough for me to function as i used to.
On consideration, the ranges are there to be guidelines but are used as hard and fast, healthy patient indications.
i need more T3, the doctor wont give me any, i will get it somewhere else by using the thyroid Uk endo list to find the endo who will prescribe combined treatment.
Not an expert. My opinion only and most importantly GOOD LUCK
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