Lowering meds.

[Sleepyachy]

Hey , so I spoke to doctor today. Said as Tsh level is lower. They will reduce.me from 125 levothyroxine to 100. So hopefully this will increase my tsh level to normal range.and I will feel better?

[tattybogle]

lowering to 100mcg should raise TSH level , because it will lower your fT4 level .

but whether or not this will make you feel better depends on whether you current level of fT4 is a bit too high for you, or not .

The TSH level itself is not the issue , TSH does not make you feel anything , T4 and T3 levels are what affect how we feel.

if your latest fT4 is very near the top of the range/ or over range, then a small reduction in dose is definitely worth trying out , because 'high end' T4 is not a great idea long term , so if you find you can feel well without having top end fT4 , that is good .

but it is a relatively big reduction from 125 to 100mcg , so it would be wiser to try 112.5mcg ( 100/ 125 alternate) for a couple of months first to see how that feels .... dropping to 100mcg could mean you end up on not enough ,and get symptoms of hypo returning.

if you do try a lower dose , give it a good 6 wks at least before you decide how it feels . in my experience dose reductions sometimes feel very undermedicated for the first 4/5 wks but then start to feel ok once the body has had enough time to adjust properly .

[Sparklingsunshine]

Doctors are obsessed with TSH because they are poorly trained and informed about thyroid. If you decrease your dose then FT4 will likely drop, which might raise TSH levels, but might not. Some people's TSH level is very slow to respond and some people's never comes back into range. So you could lower to 100mcg and your TSH will still be very low.

[Anthea55]

Who invented the 'range'? What is 'normal'? The range for TSH seems to be useful when first diagnosed, but after that it isn't. Unfortunately many doctors don't know this.

Keep watching your T4 and T3 and see where they are.

Many of us have suppressed TSH, particularly if we are taking liothyronine.

[elaar in reply to Anthea55]

No one invented it, it's supposed to represent the 5%-95% range in a large sample size of the general population. However, yes, it's a deeply flawed diagnostic measurement, for many reasons.

[Jazzw]

Looking at some of your older posts, I’d say you’re about to feel worse, not better.

I’m so sorry. The care for hypothyroid patients can be utterly rubbish here in the UK.

[Sleepyachy in reply to Jazzw]

Awe no... I don't want to get worse. I thought they would increase than decrease. I said I haven't got any signs of it been over active. But there heads just go with ranges etc. I said I don't go with ranges I go with how I feel.

[Sleepyachy in reply to Sleepyachy]

So if increase tsh by lowering my normal t4. What does a low t4 mean? Effect

[humanbean in reply to Sleepyachy]

T4 is what the thyroid produces in a healthy person or is taken in the form of Levothyroxine in a person with hypothyroidism. Someone with hyperthyroidism has too much T4, and someone with hypothyroidism produces too little T4 or takes too little in the form of Levo.

T4 is converted to T3 in various organs of the body e.g. the liver. T3 is the active thyroid hormone that is required by every cell in the body because it affects the metabolism of cells. It is the level of T3 that determines how well or ill people feel. Too much T3, they are hyperthyroid, too little they are hypothyroid.

[Hidden in reply to humanbean]

My T4 is always top of the range or slightly over which doctors do not like. Tough! I feel well and I have no intention of listening to the nonsense some doctors say about the TSH and T4 levels. They rarely test T3 or antibodies unless I pay for it so I pay a private testing lab so I don’t have to listen to what THEY think is an acceptable level my thyroid levels should be. They don’t actually care how I am feeling or symptoms, it is all about the TSH and whether I am in their totally unrealistic ranges

I have said what I I think so I am off to get my caffeine fix! ☕️

[humanbean in reply to Hidden]

They don’t actually care how I am feeling or symptoms, it is all about the TSH and whether I am in their totally unrealistic ranges

I've seen other comments along the same lines on the forum before, and had similar experiences myself. It's a terrible way to practice medicine in my opinion.

If someone on Levo/T4 has a high in range Free T4 and then starts taking T3 it often actually reduces the Free T4 without any change of dose in the Levo/T4.

[Hidden in reply to humanbean]

Yes I agree with you

[TiggerMe Ambassador in reply to Hidden]

I'd suggest if you need your fT4 above range then for the sake of your health I'd look to add some T3 as it is known that long term raised fT4 isn't great

[Hidden in reply to TiggerMe]

I didn’t make myself clear I have Graves’ disease and my T4 is always highish but my T3 is well within range and my TSH is low but in range. This is normal for me and I am not on any medication at the moment. I am an unusual but not unknown case where I sometimes have low thyroid levels and sometimes take NDT when this happens. A very famous but now dead doctor who was an expert on thyroid disease was my doctor. I now use his protocol to continue my good health. Does that make sense?

[TiggerMe Ambassador in reply to Hidden]

👍 Thanks for clarifying

[tattybogle in reply to Hidden]

if you are keeping fT4 levels at top end / or advising others it's ok to do so , please bear in mind that there are some genuine concerns ( not just the tsh obsessed stuff we are used to ignoring) , ie . recent research is finding that higher T4 levels can promote cell proliferation in some kinds of cancer ~ i used to have my top end/ over range T4 to feel well and not worry about it , but in last few yrs i've changed my mind and as i do have a mild form of skin cancer , i'm now deliberately keeping my fT4 lower by adding a bit of T3 to make up for the lowered dose of levo.

healthunlocked.com/thyroidu...

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[Rosebud1955 in reply to Jazzw]

I would say that the care for hypothyroid patients is VERY poor world wide. I live in Canada and we face the same dilemma over here. Poorly trained doctors, including the endocrinologists. On top of being poorly trained, they also lack empathy. Thyroid disease predominantly affects females and the majority of doctors see women as hypochondriacs and whiners. Very sad indeed 😥

[greygoose]

I don't think you will, no. TSH doesn't make you feel anything, good or bad, whether it's high or low. Symptoms are caused by T3 when it's too high or too low, and they don't even test that. Do you ever get your FT4 tested? Myself, I would always refuse a change in dose based on the TSH alone because it is a very poor indicator of thyroid status, and on its own doesn't tell you anything much. A low TSH does not automatically mean you are over-replaced.

[SlowDragon Ambassador]

Just testing TSH and Ft4 is completely inadequate

Was last test done early morning and last dose Levo 24 hours before test

healthunlocked.com/thyroidu...

BEFORE reducing dose get FULL thyroid and vitamin testing

What vitamin supplements are you taking

Please add most recent vitamin results

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

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

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Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

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

Only do private testing early Monday or Tuesday morning.

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

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

Monitor My Health (NHS private test service) 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/testing/priva...

[Pnut]

hi , I was taking 125mcg for a couple of years felt reasonable, out of the blue July 2024 my gp reduced my levothyroxine as it was .22 and was reduced by 25mcg had a blood test TSH, Dec month reading TSH 2.34 January blood test TSH 6.55🥺 different gp now back on 125mcg🙂

I had an appointment with cardiologist in September and asked question regarding reduced levothyroxine as it he said that my GP was worried so it got reduced, then said have you been eating shellfish which I had, (so no shellfish 2wks before TSH blood test)

[Sparklingsunshine in reply to Pnut]

You are on what is known as the TSH seesaw. Doctors look at a low/ suppressed TSH, panic, lower your dose, often unneccesarily, by 25mcg, again often too much. Then you go back for a repeat blood test and they see your TSH has risen again in response to the lower dose and need to put you back on your old dose again. Rinse and repeat.

[Sleepyachy in reply to Sparklingsunshine]

So the doctors want me to lower dose. The raise my tsh level to the range there happy with. Which will lower my normal T4 range. Then am I suppose to feel better at in range tsh ? Lower t4. Confusing me all this . 😕

[tattybogle in reply to Sleepyachy]

the reason they want to keep TSH in range has nothing to do with whether getting TSH in range will make you feel better or not ,

it is because they are worried about the long term risks of having slightly too much thyroid hormone (T4/T3) and they ( mistakenly) use TSH as a guide to tell them whether your body thinks the level of T4 you have is a bit too much for you .

if TSH is below range they believe it tells them that the fT4 level is too high for you . ( and having more thyroid hormone than your body needs for a long time certainly does increase the risks for developing all sort of problems ~ mainly with heart and bones.)

this belief (that TSH level is always a correct reflection of the amount of thyroid hormone the body wants) is mistaken , because sometime a low TSH does mean the thyroid hormone level is too high for what that person needs , but not always , and especially not when someone is already taking thyroid hormone .