Dr wants to lower meds I dont: I am a long-term... - Thyroid UK

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Dr wants to lower meds I dont

miravgraves profile image
24 Replies

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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PurpleNails profile image
PurpleNailsAdministrator

FT4: 23.6 pmol/l (Range 10 - 22) 113.33%

FT3: 4.4 pmol/l (Range 3.1 - 6.8) 35.14%

Your issue is poor conversion.

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?

miravgraves profile image
miravgraves in reply toPurpleNails

im in uk they wont do folate, ferritin, B12 & vitamin D test.

PurpleNails profile image
PurpleNailsAdministrator in reply tomiravgraves

If doctor can’t or won’t test arrange a private test.

Order a kit online and sample can be taken by fingerprick test, sample posted back & results available online often very quickly.

Sample recommended to be taken at 09.00 fast overnight, avoid biotin 3 days before test.

See link for private companies with discounts with many packages & options.

thyroiduk.org/testing/priva...

Medichecks thyroid advanced as good option.

Were your previous endocrinologist private or NHS?

Starseed56 profile image
Starseed56 in reply tomiravgraves

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! 💜

Boble profile image
Boble in reply tomiravgraves

Yes they do, you have to ask for it every time. I am in Devon

Boble profile image
Boble in reply tomiravgraves

TSH is not a safe marker for levels.. FT3 & FT4 give a better result as to where you are.

I wonder, how do you feel within yourself?

And why not try lower 125mcg for 6-8 weeks + and do FBC + Supplements.

Post results on here please. So other people might take note. Thanks. :)

Gingernut44 profile image
Gingernut44 in reply tomiravgraves

This is a UK forum - most members are in the UK. You have to ask your GP for these tests, they won’t offer them if not.

Forestgarden profile image
Forestgarden

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:

sciencedirect.com/science/a...

Popscicle profile image
Popscicle in reply toForestgarden

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.

SlowDragon profile image
SlowDragonAdministrator

was test done early morning, ideally before 9am, only drinking water between waking and test and last dose levothyroxine 24 hours before test

Do you always get same brand levothyroxine at each prescription

What vitamin supplements are you taking

When were vitamin D, folate, ferritin and B12 last tested

FT3: 4.4 pmol/l (Range 3.1 - 6.8)

Ft3 only 35.14% through range

Currently your results suggest very poor conversion

Getting all four vitamins to optimal levels can frequently improve conversion rate

But if Ft3 remains low then you likely need addition of small dose T3 prescribed alongside levothyroxine

Will your endocrinologist prescribe T3?

Forestgarden experience is typical ……High Ft4 gives hyper symptoms…..but reducing Ft4 (levothyroxine) and Ft3 gets even lower

over 64,000 prescriptions in England in last year on NHS

Typically that’s 6 prescriptions per person per year

openprescribing.net/analyse...

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

thyroiduk.org/contact-us/ge...

Forestgarden profile image
Forestgarden in reply toSlowDragon

Thanks SlowDragon , yes thought it was fairly typical... but had to give it a go!

miravgraves profile image
miravgraves in reply toSlowDragon

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

SlowDragon profile image
SlowDragonAdministrator in reply tomiravgraves

Then your Ft4 result is falsely low

If you tested after 24 hours Ft4 would be higher

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

thyroiduk.org/testing/

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Tips on how to do DIY finger prick test

See detailed reply by SeasideSusie

healthunlocked.com/thyroidu...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65

(Doesn’t include thyroid antibodies)

monitormyhealth.org.uk/full...

10% off code here

thyroiduk.org/getting-a-dia...

miravgraves profile image
miravgraves in reply toSlowDragon

Thanks

MrGrumps profile image
MrGrumps

I would phone your endos office and confirm. Then, armed with the facts, go back to your GP.

CaptainBeOS profile image
CaptainBeOS

You need some ammunition to take back to your GP to explain to the uneducated fool why your TSH needs to be that low. Here it is:

See e-enm.org/upload/pdf/enm-20...

Key paragraph:

"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.

Your current dose is optimal according to this.

Have a nice day.

Charlie-Farley profile image
Charlie-Farley in reply toCaptainBeOS

Brilliant - that’s going in my file thanks for sharing 🤗

Cavapoochonowner

miravgraves profile image
miravgraves in reply toCaptainBeOS

thats what i thought about the tsh it could go an other decimal place lower

Cavapoochonowner profile image
Cavapoochonowner

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.

miravgraves profile image
miravgraves in reply toCavapoochonowner

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

Cavapoochonowner profile image
Cavapoochonowner in reply tomiravgraves

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.

Hashiboy profile image
Hashiboy

hi there, miravgraves my TSH test last week was 0.05 - I’m on combo therapy and GP happy to be guided by endo

janh669 profile image
janh669

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

Bigthensmallthenbig profile image
Bigthensmallthenbig

PurpleNails has nailed it (as usual)!

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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