Recent blood test

[Campy1967]

Just got the latest blood test today it was TSH 3.9 they only tested the TSH ive been on 25 of levothyroxine for about 6 weeks just wondering what people make of it will i keep on the same dosage or stop taking it the Dr is phoning me tomorrow for a chat .

[tattybogle]

How do you feel ?

unless you currently feel 'perfect '..... you want them to increase it to 50mcg and retest after another 6-8 weeks , .... DON'T let them stop it .

Your TSH is still higher than is ideal for someone taking Levo . So that means your Levo dose could do with being a bit higher , which is not surprising as most people will need somewhere between 75mcg -150mcg before they feel consistently better.

If GP says "your TSH is normal now so i don't need to increase it" use these recommendations for GP's , healthunlocked.com/thyroidu.... my-list-of-references-recommending-gps-keep-tsh-lower

some are taken from GP 'update' sources... one is written specifically for GP's by NHS Specialist Registrars in Cardiology and Endocrinology .... so there should be no argument about their validity .

All of them Recommend GP's keep TSH below 2/2.5 ish in patients on Levo

[Campy1967 in reply to tattybogle]

Ok thanks forgot to mention TSH was between 5.0 and 6.2 before treatment started thats with a few blood tests before.

[Campy1967 in reply to Campy1967]

Feel a bit better but not as good as i thought or expected to feel but maybe iam not giving it enough time to work .

[tattybogle in reply to Campy1967]

think of it a bit like adjusting the thermostat on the central heating .

when the house is freezing .... you turned it up a bit when you added 25mcg levo) the boiler came on for a bit and you noticed a brief whoosh of warm when you walked past the radiator , and the the house is overall a tad warmer than it was ...so it has 'worked' .

But 25mcg levo is only the same as turning the thermostat up to about 10 degrees C . i.e nowhere near warm enough for you to be comfortable.

"not feeling better on 25mcg" doesn't mean it hasn't worked, or that you need to wait longer for it to warm up . (it wont warm up ~ you set it at 10degrees and it's got there .. it will stay at 10 degrees no matter how long you wait )

It means you need to turn the thermostat up a bit more (ie. take 50mcg and see how that feels)

you wont feel consistently better until you are on the right does of Levo 'for you' , (and have been on the right dose for several weeks ) ...until that point is reached you will probably feel a' bit better~ then a bit less good again' each time the dose is increased.

you can expect it to take several months of dose adjustments before you find the right does and feel consistently better .

[Rosebud1955 in reply to tattybogle]

excellent analogy tatty!

[SlowDragon Administrator]

previous post

healthunlocked.com/thyroidu...

Presumably you did test done early morning around 9am and last dose levothyroxine 24 hours before test

You need next 25mcg dose increase in levothyroxine to 50mcg

Bloods retested again in another 6-8 weeks

You will need several further increases in dose levothyroxine over coming 6-12 months

Get vitamins and thyroid antibodies tested too

[Campy1967 in reply to SlowDragon]

Yea did blood test at 9am and didn't take levothyroxine for 24 hrs before .

[McPammy]

I feel your TSH is still too high. Your GP might say it’s normal but normal is anywhere between 0.35-5.50 to them when actually you will feel symptoms when your TSH is over 2.5. NHS ranges are set too wide. The best TSH is around 1.00 this is normally where a healthy persons thyroid results are. My private only endocrinologist explained all this to me. To bring your TSH lower you’ll need an increase in your levothyroxine dose. Then redo bloods again in 6 weeks max. But if you feel unwell with the dose increase contact your GP for a blood test as going over medicated brings its problem also. It’s all about finding your own individual sweet spot I’ve found. Some people can cope easily with a suppressed TSH and others like myself cannot. You can have very similar symptoms when over or under medicated. My TSH is usually around 1.00 with my T4 and T3 midrange following the absence of taking any medication on the blood draw morning. Getting my levels right for me has brought me so much joy, energy, positive vibes and enjoying life again from an awful place when I wasn’t medicated properly.

[Campy1967 in reply to McPammy]

Thanks and that's where most problems lie with TSH ranges not clear enough especially with GPs no disrespect intended.

[McPammy in reply to Campy1967]

GP’s generally have no clue about thyroid conditions. They just go off numbers and as long as your results are in range they won’t do anything normally. My GP admitted this to me and on two occasions said I may as well be taking to a plumber! At least he was honest I guess. I changed tack then and went private only (no NHS involvement).

[Campy1967 in reply to McPammy]

Had a chat with Dr today said to leave me on 25 levothyroxine have another blood test in 6 months when i mentioned about ideal TSH level on levothyroxine to be around 1 to 2 .5 she said some values had changed?

[McPammy in reply to Campy1967]

I think the values had not changed. My endocrinologist is extremely pleased that my TSH is 1.00 and said it’s the optimal figure. That’s disappointing she said that. I’d ask to be referred to an endocrinologist. GP’s know very little about levels they just look to see if you’re in range then leave you months not feeling as you could. 25mcg is a tiny dose. You can request to see an NHS endocrinologist but the wait will probably be long. Or go private only. It’s not expensive. You’ll get an appointment very quickly. You’ll need to get a GP referral letter to your chosen private only endocrinologist and send them your most recent bloods. GP cannot refuse. They will alter your dose correctly, then send a letter to your GP instructing them to change your prescription. It’s quite simple really. You could have months of not feeling good otherwise.

[Campy1967 in reply to McPammy]

Maybe i could take 25 levothyroxine twice a day or is that not a good idea I'd soon run out lol

[Charlie-Farley in reply to McPammy]

I'm just catching up on this post in its entirity - you are so on point GP's know very little. Campy1967 just enough to be dangerous! 😱😂

[tattybogle in reply to Campy1967]

Sorry Campy, but what she told you is bollocks.

"when i mentioned about ideal TSH level on levothyroxine to be around 1 to 2 .5 she said some values had changed?"

What values ?

the way the human body's HPT axis functions certainly hasn't changed ( Hypothalamus / Pituitary /Thyroid axis , responsible for the level of TSH that we make )

Certainly local 'lab reference ranges' for TSH do change a little bit every time the lab changes machine or updates local reference populations , but those minor adjustments have ABSOLUTELY NOTHING to do with the recommendation to keep TSH below 2/ 2.5 in patients on Levo .. the recommendations are given to apply to ALL TSH ranges in current use.

TSH ref range is pretty well standardised across UK labs now anyway (unlike fT4 testing which does still have a wide range of ranges) , most UK TSH ranges will go from aprox 0.5 ish to aprox 4.5 ish .

and regardless of what the exact top and bottom end of the local lab range is .. the recommendation for TSH to be "about 1 or under 2.5" is unaffected . It still stands for all TSH ranges.

Ask her to clarify exactly what 'values she is claiming have changed. ??

This recommendation for GP's certainly hasn't changed ~ and it was updated as recently as 2021 gpnotebook.com/en-gb/simple...

I bet she won't be able provide any meaningful answer ... in my opinion you have just been fobbed off.

Another 6 moths is a long time to remain on just 25mcg and as i explained in my thermostat analogy .. it's not going to get any 'hotter' on 25mcg no matter how long you wait ... perhaps you should read  Charlie-Farley 's experience of being left on 25mcg for ages and fobbed off ...... and how much better she is since she pushed them to treat it properly (click on her name it will take you to her profile page ).

[Campy1967 in reply to tattybogle]

Ok iam going to push her think she is of the opinion because my TSH level has come down from between 5.5 and 6 and above to 3.9 in about 6 weeks on 25 of levothyroxine she is happy to leave it at that but in reality dont think its going to come down much further.

[tattybogle in reply to Campy1967]

if she thought that 6 weeks was not long enough to allow TSH to move in response to the fT4 levels from a 25mcg dose.. then (at a push!) that would be an argument i could accept .. however if that was the case, then waiting another month or two (at most) to retest would be appropriate. but NOT 6 months.. TSH takes a while sometimes but not that long

You could ask her to test your actual fT4 levels .. they only take about 3 or 4 weeks to be a true reflection of a dose of levo.

if she had started you on something like the full expected dose of Levo (75 -150mcg) and your TSH was 1 ish at 6 weeks but you still felt rubbish .......THEN it would be reasonable to wait another 3-6 months to see if symptom response caught up with TSH before considering increasing the dose .

But in your circumstance , when 25mcg is only half the usual recommended STARTING dose .. and your TSH is over the recommended level for optimal thyroid replacement... then waiting 6 moths is totally uncalled for.

You fT4 level is not going to rise during this time unless your dose is increased .. your thyroid is not going to suddenly decide its feeling better and make some more T4 of its own .. so ask her to clarify EXACTLY what she is expecting to improve during this 6 months period , and by what mechanism exactly this is supposed to be happening .

[Charlie-Farley in reply to tattybogle]

GP is really clueless - Why are so many stating people off on 25ug, when not necessary ?? beyond me🙄

[McPammy in reply to Campy1967]

you really do need to press for a valid answer but being a GP I doubt she’ll know. If you still have symptoms you need an increase. I’d suggest another 25mcg but then you’ll run out and you can’t go without. So that’s not an option really. 25mcg is a tiny dose. You should be on at least 50mcg to start that’ll bring your TSH closer to 1.00. I’ve never ever heard any Dr say see how it goes for 6 months that really is neglect. 6 weeks in max time. You could phone the surgery manager and politely express your concerns. You can mention you have been in contact with Thyroid UK and what you learnt. I did that and they sat up and listened more and that’s down to GP’s not really knowing enough about the endocrine system and thyroids. It’s a specialists subject. On the forum there are many patients who have been down blind alleys and fobbed off. Your health will return as long as you are on the correct dose. TSH around 1.00 and you are symptom free most of the time. It is all achievable. You should be getting blood tests off your GP until you are symptom free. The blood tests costs pennies it’s not like the tests are costly.

[Charlie-Farley in reply to McPammy]

Hi McPammy, Campy1967 , tattybogle

Mine did - well actually it would have been longer if I hadn't crashed and Dave hadn't dragged me to the doctors. I think mine thought she was topping me up - it was see you in a year! I have no idea what the hell these GP's are reading?? Beano??

[Charlie-Farley in reply to Campy1967]

Hi Campy ,

The relationship between TSH and dose is not linear and the relationship between you being well and your TSH being in range is not guaranteed either.  GPs are routinely undermedicating people because they do not know enough to step outside of the basic guidelines and use the latitude that is ACTUALLY written in.

NICE guidelines on levothyroxine

cks.nice.org.uk/topics/hypo...

NICE guidelines on hypothyroidism 

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

The two links above are essential reading for anyone with hypothyroidism, and you will see that there is latitude within the guidelines to work on the symptoms.

They have put that there because they know the current paradigm does not work for many people, but they do not have the kahunas to actually say it.

Research treads around egos and long, established careers that have been perpetuating the flawed narrative.

Drs don’t read up to date literature so just presume the guidelines are sufficient and have no idea what goes on in the background- they just follow blindly then get irritated when the patient doesn’t get better and gaslight the patient rather than think this isn’t right? 🤔

[Charlie-Farley in reply to tattybogle]

I’ve replied too -I would dread anyone to experience that!

[Charlie-Farley]

Campy - do read my bio - I wrote it as a case study to inform others coming after. Its relatively short and covers some of the main issues around GP's lack of understanding reasonably well (I think).