How long before you feel a reduction in T4? - Thyroid UK

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How long before you feel a reduction in T4?

marsaday profile image
26 Replies

Every so often I like to reduce my t4 to see how I react.

I take 125 t4 at bedtime and last night I took 100 (so 25 less).

This morning I felt a little off and at 5pm I was much more tired than normal.

What I don’t understand is why my body reacts so quick to a reduction. When I add in my ft4 level it doesn’t make sense.

You see my ft4 is around 22, so top of the range. You would think I have plenty of t4 in the tank and so could easily go on less t4 for a few days, but it doesn’t seem to be this way.

I wonder if more t4 might help the situation.

My ft3 has been around 4.8 on recent bloods and tsh is around 0.5-1.5 on a few different bloods.

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marsaday
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26 Replies
Annegirl1919 profile image
Annegirl1919

I have always felt every tiny change in medicine pretty quickly. It has made this journey so hard because I will feel a change in the beginning-for me it might be when they need to increase my dose. The first day I will feel the difference, almost anxious and edgy like if I was overmedicated, but I have to stick with it long term so my levels improve, and eventually the things I notice at first go away. I always wonder why I am so sensitive. I hypothesize that my body is used to dealing with/functioning on a certain amount of medicine and any change just throws it for a loop and makes it have to figure out how to function in a different reality...? I would love hear if others are this sensitive as well.

HLAB35 profile image
HLAB35

Autumn is probably a bad time for a dose reduction. We tend to need more, not less, in the colder months. You've not quoted lab ranges, but your t4:t3 ratio looks as though it may be suboptimal.

Try working on vitamins and minerals.

littlecandle profile image
littlecandle in reply toHLAB35

I always notice changes at once, especially if my dosage is dropped. Unfortunately, I am hyper-sensitive to a lot of things, which doesn't make for an easy life.

HLAB35 profile image
HLAB35 in reply tolittlecandle

Just from my own experience, I have noticed that I have become a lot less irritable both physically and emotionally since I started supplementing with more Magnesium. One indicator for Magnesium is actually vitamin D, as we have better vitamin D absorption when getting more Magnesium. The two work in parallel. Good vitamin D levels are also very important for our physical and emotional resilience. Vitamin D tests are relatively inexpensive.

littlecandle profile image
littlecandle in reply toHLAB35

My Vitamin D was exceptional when it was tested last year, as I had just come back from 2 weeks in the sun! It is usually good, especially considering how pale I always am. This year, my GP is testing nothing and I have no money for any private tests, as my hours have been further cut at work in a bid to save the company.

HLAB35 profile image
HLAB35 in reply tolittlecandle

I like the sound of your last year's summer holiday! Well, it's no good that your GP isn't doing routine tests at all for the essential vitamins you need when Hypo. The symptoms of B12 deficiency are also known to effect our mood, so it's worth flagging this with your GP as low vitamins are very common and can reduce the effectiveness of Levo.

littlecandle profile image
littlecandle in reply toHLAB35

my GP refuses to do routine vitamin tests unless I leap up and down and make a complete nuisance of myself. And as getting anyone to answer the phone there is all but impossible at the moment, there's no danger of any blood tests at all.

HLAB35 profile image
HLAB35 in reply tolittlecandle

Fortunately mine has always been ok about iron testing as I've been anaemic a couple of times, but I then try and squeeze in the b12 and folate at the same time if possible (they all need to be good for red blood cells). I get vitamin D done by post. It's around £30. It's sometimes necessary to list off symptoms of low iron or b12 to argue for it, but almost impossible if they're completely lacking in empathy. My GPs are pretty good people, in general.

littlecandle profile image
littlecandle in reply toHLAB35

Unfortunately, my hours have just been cut and £30 is something I definitely don't have spare. I didn't have it spare before my hours cut. So until I am able to get a miracle and have bloods done, I shall just have to muddle along as usual. Our surgery is so bad it is headline news in the local paper tonight and the Scottish Health Secretary has once again been brought into the row.

HLAB35 profile image
HLAB35 in reply tolittlecandle

The GP surgery you've been stuck with sounds shocking. Hopefully, if they're getting a run of bad publicity a higher authority will intervene. I agree that it's ridiculous that to do things in a timely manner that we effectively have to go down the private route. So many pioneers of the NHS would be appalled.

jgelliss profile image
jgelliss in reply toHLAB35

Thank You HLAB35 Chuckful of *Great and Very Valuable Information.

marsaday profile image
marsaday in reply toHLAB35

Yes autumn is not the best time to be doing this BUT it possibly confirms i need a little more. Thats why i find reductions can be helpful in guiding you. I was just so surprised that it didnt take so long to feel off. I am getting older as well, so maybe this has to be factored in.

Also started testosterone treatment and so this has made a positive difference to. So i was also testing to see if maybe i didnt need as much thyroid

My T4/T3 ratio is not as good as in the past, but i feel well generally.

HLAB35 profile image
HLAB35 in reply tomarsaday

I prefer not to experiment once I'm on a metaphorical plateau, but, I can see why you gave it a go to test the boundaries a bit, which is always interesting. As I responded to littlecandle just now, it'd be worth optimising your vitamins (especially D) at this time of year. Carnitine is known to regulate the uptake of thyroid hormone (Dr Myhill recommends it for her CFS patients). If you like tweaking things a bit, then you may find it worth looking into.

thyroidpharmacist.com/artic...

marsaday profile image
marsaday in reply toHLAB35

Interesting info. I will look into Carnitine a bit more

jgelliss profile image
jgelliss in reply toHLAB35

From my personal experience I found that in the past when supplementing with Carnitine I started to get hypo symptoms.

HLAB35 profile image
HLAB35 in reply tojgelliss

I found it helped with iron uptake. Admittedly I would not recommend to anyone with low t4 levels. It seems to reduce spikes in thyroid hormone which may help if dose increases cause palpitations. It's complicated, but it does have a kind of dampening effect. The use of carnitine for enhancing carbimazole is well documented for Graves, so it wouldn't be appropriate for someone who is only just starting out with thyroid replacement.

Marz profile image
Marz

Changing doses can be confusing for a sensitive system like the endocrine ... 🌻

jamesal0 profile image
jamesal0

Hi John How you going.

Because I can't tolerate Levo - the stuff gives me a headache the moment I get a respectable TSH. When I have to take Levo (instead of 60mg NDT), I take the bare minimum (25mcg) and probably have a TSH of about 5-6. I feel it over night if I miss any or even delay taking . Most people carry 4-5 days Levo in their blood and tissue if they are correctly dosed. So it sound like you might be a little under medicated even at 125mcg or its in your head. Do a blind test. Get someone else to draw up your levo for 2 months, then get them to throw in a random week at 100mcg and another another at 150mcg. I bet you pick it within 2 days of the change.

James

marsaday profile image
marsaday in reply tojamesal0

Pretty sure it’s not in my head as I do it once or twice a year. I get the same result but this time it was more pronounced.

My dose based on weight should be 150mcg but I have always done 125 as the ft4 is top of the range. I know older ft4 ranges went higher so maybe having a ft4 around 25 is all ok (I think this is where I would be on 150).

Will see how 150 t4 goes over the next week or so.

jamesal0 profile image
jamesal0 in reply tomarsaday

@John. T4 consumption also depends on outdoor temp and your activity. As an example. I burn up maybe an extra 12.5mcg perday when training in the an unheated out door pool 5 days a week. If I stop training and keep taking the extra levo I'll start to OD within a week.

J

marsaday profile image
marsaday in reply tojamesal0

I do a lot of sport so agree. Throw in the testosterone as well and it changes everything up (for the better)

Cat013 profile image
Cat013 in reply tojamesal0

jamesal0 You’ve just answered the question I’ve been seeking for a couple of months 🙌🏻 Since I went up to 75mcg of levo and then to 112.5 I’ve had a constant headache each side of my head which feels like pressure and I also have horrible tinnitus now with blocked ears. I’ve always thought it was the levo because neither were original hypo symptoms. Thank you!

Marsaday my Dr dropped my levo because of a rubbish endo’s demands and I feel it already in just over a week and the drop was only 112.5mcg. x

jamesal0 profile image
jamesal0 in reply toCat013

Hi Cat. If you are sensitive to Levo you may need to fine tune your dose day to day. When I have to take it, I just take enough to give me a mild - but tolerable head ache. But even at that level I think I make poor decisions - brain fog. The things that help are maxed out B12 and as John says Testosterone supps. Not abusing the stuff, just nice daily dose - equivalent to what woman do on HRT. But really the only way to fix it is to go on NDT (plus B12 and T)- if you can get it that is. It gives you energy, helps you loose weight, generally feel normal and get a respectable TSH (around 1) .

James

Cat013 profile image
Cat013 in reply tojamesal0

jamesal0 Thank you. I think I need to go on a combination of levo and T3. Or NDT like you say. Maybe that’s the answer. If I don’t try it I’ll never know. I didn’t have the pressure headaches or tinnitus on 75mcg of levo or less so it’s worth a shot I guess My B12 is over range but an endo specialist (a decent one lol) said it wasn’t high enough to worry about just don’t take supplements etc. So I know that’s good. All my vitamins and minerals are A1 now 🙌🏻 I’ve worked hard on them. Someone at thyroid UK recommended I took a test to see if my conversion of t4 to t3 is poor. And If so it’ll help my NHS plea to have t3. So we shall see 😊.

Why do you want to lower your FT4 levels? If on levo only, it´s often recommended to have high in range FT4 levels to ensure adequate T4 to T3 conversion. Your TSH is also good on 125 mcg (it´s usually recommended to keep it around 1 or lower on levo only). You don´t mention the ref ranges for FT3, but if the top range is around 6.5 your FT3 is far from optimal. Some people even need above range FT4 levels to raise their FT3 levels.

Do you have hyper symptoms? If not, why lower levo?

marsaday profile image
marsaday in reply to

I’m pretty experienced with my thyroid and just test out lower doses every so often.

Prob because my ft4 is always top of range. I am aware a lower amount might help push up tsh and so help the ft3 number. It might if I could wait a few weeks but that’s not going to happen.

Ideal figures for ft4 are mid teens and over 5 for ft3. This is what you tend to get in non thyroid people. I was trying to see if I could replicate this.

I am aware docs are fixated on ranges etc and it is all systemised. It looks like 150 is going to be better for me and that means a ft4 around 25. I know my numbers quite well.

I will get bloods in about 4 weeks to see what has happened.

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