Test results/levo dosage

[nw1991]

After a month on a starter dose of 25mcg I had a blood test done. Drs receptionist called and said tsh is stable so continue on that dose and retest in two months! Havent checked my t3 & t4 even though I specifically requested! All they can say is my tsh is 0.93. Had to push back to the doctor and ask for increase to 50mcg as still very symptomatic. Has anyone else had this issue getting the doctor to increase levo with stable tsh?

[Catseyes235]

I’m disgusted that receptionist should do this - it’s not her place so please ask for phone consult with doctor and if you’re on 25mcg then you can double up to 50 mcg. I’m afraid NHS seems to be only offering TSH blood test under NICE guidelines. My doctor recently asked for full thyroid bloods but even he was ignored.

You’re results may be within range but mine is much much lower and they say I’m over treated because I take 100 - 125 yet get hypo symptoms when reduce dosage. Btw I’ve just accessed my records and found that my results have been fairly consistent for 15 years!! Everyone is different.

Good luck!

[nw1991 in reply to Catseyes235]

Hey Catseyes235. It really is crazy that they will only look at 1/3 of the overall picture isn’t it. Well I did battle and ask for the doctor to call me and he has agreed to up the dose to 50mcg and retest in two months. Got there in the end but you shouldn’t have to push should you! Did you know you’d hit the right dosage at 100-125 because it alleviated your symptoms? I’m struggling to know when I’ll realise what the right dosage is for me. Thanks xx

[Catseyes235 in reply to nw1991]

Been on thyroxine about 40 years and no problem until TSH suggested I was over treated. That was 15 years ago so 25 years of trouble free meds. but doctor said as long as asymptomatic they just left alone. I was on 150 mcg and a newish doctor said I really should decrease dosage which I eventually dropped to 125. as TSH was ‘vanishingly small’ about 0.01! However I felt fine but my old doc said I should try and reduce further as still low reading ...soooo I’m trying 112.5 mcg. I think it probably takes a while to build up to full strength, 2 years in my case because I was very hypo to begin with, may be quicker for others, but patience is the name of the game. I hope it doesn’t take long before your feeling back to normal and can just take your daily thyroxine and just get on with life. Good luck!

[nw1991 in reply to Catseyes235]

I’ve read on a lot of threads that suppressed tsh at around 0.01 is where most hashis people feel better, but I know that the nhs don’t like it. It’s such a pain, we know our bodies!! Hope you manage to stay feeling well

[Catseyes235 in reply to nw1991]

Bang on! As I’ve said to my doctors if I was seriously over treated I’d surely show hyper signs but don’t . Interesting that you talk of Hashimoto’s because I’ve always been medically described as having Graves. That was because my thyroid was overactive when diagnosed but had had at least two periods of being hypo but no one took that seriously. (Let’s face it typically female - depressed, worried about weight etc!!) For 10 years I was actually on a two year cycle of over and under active so maybe I was misdiagnosed altogether!

[nw1991 in reply to Catseyes235]

I was overactive too when first diagnosed so they gave me carbimazole tablets and I piled on 4 stone that I’ve never been able to lose since! Most endos are more focused on diabetes, I think it’s rare to find someone that truly understands. Most people on here I find are better researched and know more than the GPS. Probably because we have to find the answers ourselves because they’re so shoddy. Thank god for this community and others like it! I feel you with the depressed, weight gain and people just fobbing you off thinking you just have your hand in the cookie jar too many times. Frustrating illness and a frustrating lack of understanding! All we can do is fight for our health and listen to our bodies

[Catseyes235 in reply to nw1991]

I was always skinny so when I went from my normal 7st 2 to 7.10 when I was 22 then again at 26 no one really noticed but I felt it because it’s not like fat but fluid. I also had carbimazole to see if that worked but when I came off became overactive again so had RAI.

[SlowDragon Administrator]

Just testing TSH is completely inadequate

Can see from previous posts you have Hashimoto’s and vitamin deficiencies

You need to retest vitamins at least annually

What vitamin supplements are you currently taking

If taking any vitamin supplements that contain biotin it’s essential to stop taking these a week before ALL BLOOD TESTS as biotin can falsely affect test results

For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

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

Medichecks Thyroid plus vitamins including folate (private blood draw required)

medichecks.com/products/thy...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off if go on thyroid uk for code

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

monitormyhealth.org.uk/thyr...

Standard starter dose of levothyroxine is 50mcg

Most people need to slowly increase dose upwards

guidelines on dose levothyroxine by weight

Even if we don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.

RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

Levothyroxine doesn’t top up failing thyroid, it replaces it, so important to be on high enough dose levothyroxine. When been hypothyroid a long time, we frequently need to increase slowly and essential to work on improving low vitamin levels too

Are you on strictly gluten free diet?

[nw1991 in reply to SlowDragon]

I do a Medichecks private test for this yearly. Last one was in May. Yes I’m gluten free, I’m on vitamin d and b complex and b12, I did avoid the b complex in the run up to my blood test and got tested first thing without my levo dose which I had straight after. Will have to start testing privately for t3 and t4 to monitor affects of levo. Thanks SlowDragon!

[SlowDragon Administrator in reply to nw1991]

List of private testing options

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

Medichecks Thyroid plus vitamins including folate (private blood draw required)

medichecks.com/products/thy...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

Cheapest option is monitor my health

£26.90

Currently not available (I am waiting to reorder too)

cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off if go on thyroid uk for code

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

monitormyhealth.org.uk/thyr...

[nw1991 in reply to SlowDragon]

Thank you! Will try those cheaper options you recommended. Appreciate it

[SlowDragon Administrator in reply to nw1991]

There’s a (hopefully) temporary hitch with test kits from Roche due to warehouse move.

Hopefully Monitor my health up and running again soo