thyroxine dose

[susiebow]

Hi , been on changed dose of thyroxine 11 weeks.Last ts h 3.25 .100 mcg one day 87.5 mcg the next.Even with slight dose change I get short of breath,and stiff.I feel any more thyroxine makes me worse,as have tried 100 mcg a day and feel awful,but by bloods ,I need an increase.Getting bloods done and of July at gp.I really feel otherwise not too bad. I really do not want to go back to adding t3 but feel i may have too.

[DippyDame]

Please post your results including reference ranges.

TSH is too high but that is only a fraction of the picture.

Minimum required....

TSH, FT4 and FT3

Also vital to optimise vit D, vit B12, folate and ferritin and to check thyroid antibodies TPO and Tg if not already tested

It's possible that you feel worse after the dose change because you still need more hormone....as you will know titrating the dose is a long slow process.

When the body receives an increase it may help for a few days with the body appreciating the extra hormone but very soon it senses that it needs more hormone.... so symptoms start to signal that

Was your FT3 low?

Hopefully your next results will help.

[susiebow in reply to DippyDame]

Hi my t3 last time about a year and a half ago was 5.1 but I was taking t3 as well then.But my t3 has never been really low.Taking vit d s pray for low vit d.It serms every time I increase thyroxine I get really short of breath and stiff,when I lower this improves.I spent years on thyroxine getting optimal which I was ,but feeling awful and feeling really ill at one point,so I do not think optimal is for me.

[DippyDame in reply to susiebow]

If you were on an optimal dose with therapeutic effect then symptoms would resolve.

The level of serum T3 doesn't always mean the cellular level is adequate

Are you sure you don't have an absorption problem or a form of thyroid hormone resistance.

I had a similar journey, my bio might offer some clues....after nearly 20 years levo left me barely able to function

Optimal just means the dose is correct, we feel well and have no symptoms of hypothyroidism....I'm not sure how you are interpreting the word when you say, I do not think optimal is for me.

[susiebow in reply to DippyDame]

Hi Dippy Dame, when I was optimal I felt hyper for years.

[DippyDame in reply to susiebow]

If you felt "hyper", (and by that I assume you had symptoms of over or under medication!) then in all liklihood the medication or the actual dose was wrong/ too high for you as an individual.

Thyroid treatment does not go by a list of numbers on a doctor's screen it also, crucially, involves how you feel

TSH of 3.25 is too high so something is wrong

That isn't optimal.

Whoever has been treating you has been missing vital clues or depending on TSH which is not a reliable marker following diagnosis

Low T3 level reduces lung function causing muscle weakness making it harder to breathe....

It looks as if your T4 to T3 conversion might be poor causing low FT3, but we cannot extrapolate that from labs after T3 has been introduced

So...

Do you have your diagnostic/ first lab results before medication?

You mention "your bloods" but what are the numbers and reference ranges

Post your upcoming labs, having followed advised testing protocol, and we can then see how your thyroid status is looking

[susiebow in reply to DippyDame]

My TSH for years has been from 0.02 to 0.39,t4 19 to 26I always felt like a car reving up and anxious,now I have dropped thyroxine dose ,that has all stopped and feel calmer.To raise my t3 ,I need to raise thyroxine dose ,but as I said when I do I get sh ort of breath and more pain.I did feel more motovated and bit better on thyroxine 75 and 5 of t3, but still not quite well.

[DippyDame in reply to susiebow]

To raise your FT3 you don't need to raise the levothyroxine....you need to add more T3 instead

It sounds as if the levo is the problem....it was for me...a few of us here cannot tolerate levo

I really do not want to go back to adding t3 but feel i may have too.

I'm afraid if that's what your body needs then that's your route to better health

So there you go....I did feel more motovated and bit better on thyroxine 75 and 5 of t3, but still not quite well.

Even adding 5mcg T3 started to make you feel better....you need more!

Report

[susiebow in reply to DippyDame]

Thanks DippyDame

[tattybogle in reply to susiebow]

Hi susie , how are you doing ? i'm trying to find that post i did ages ago where i put all your previous results together (from when you were on T3/Levo combo and then T3 only) , but can't find it, do you remember where it was ?

DippyDame , it wasn't cryptic, i meant i remember susie previously had problems when using combo and T3 only .

[susiebow in reply to tattybogle]

Hi Tattybogle,I am looking back to see where you kindly listed all my results Tatty, cannot find it yet.I am doing far better than I used to.A lot calmer,can do more ,its just this stif fness and knee and hip pain and sh ort of breath on excertion,If I could just get the dose a bit more tweaked,I did add t3 to my 87.5 mcg dose and felt better but next day I added it to my 100 mcg dose and felt awful,so stopped that !Hop e all is well with you.

[tattybogle in reply to susiebow]

i'm ok thanks ,had to come out of 'retirement' and go back to work a couple of days a week, which means i'm not getting much done apart from that .. but i'm enjoying having enough money, that bit's quite nice , i can even afford a very nice takeaway curry on my way home, havent had spare money for that sort of frippery for ages. Finding anything by looking backwards through replies is so darned difficult on this site , i wish HU would improve that aspect of it a bit .. really frustrating cos i know it's there somewhere , ah well .....if i come across it by accident i'll send you a link to it so you can find it in future, save you answering 20 questions every time.. best wishes xx

[DippyDame in reply to tattybogle]

Maybe not to you Tatty.....but I'm not a mind reader.

[tattybogle in reply to DippyDame]

Hi dippy d , just a heads up in case you haven't gone back that far , susiebow has previously tried doses of 10mcg and 12.5mcg and 15mcg T3 , over a period of time , see earlier posts from approx 2 yrs ago .... there were problems.

[DippyDame in reply to tattybogle]

There usually are problems along the way, which problems are you referring to here?

I've asked susiebow if she has her diagnostic labs so that we can see where/ how this all started.

She has a long history of experimenting with different T4/T3 doses....I know how difficult that can be especially if some form of resistance/poor absorption is involved.

She also has Hashi's which adds to the issue

It looks as if she may not be tolerating Levo very well, as I suggested to her.

You mention doses of up to 15mcg T3...that may not be enough...

A new set of full results after 6 weeks on a steady dose may give us a better idea of what is going on

I don't have the time or energy to read her many posts over many years, but I do recall responding to some of them. It would be helpful if you could be more specific about what appears to be your concerns.

I can only respond based on my own experience of travelling a circuitous route to eventually reveal a form of thyroid hormone resistance, and to then learn how to dose safely with high dose T3-only.

I clearly cannot claim to have all the answers but I do try to ensure that my comments are as accurate as possible and are. backed up, if necessary, with evidence.

 susiebow I'm not sure what tattybogle is referring to in her cryptic comment above but if I've missed something significant then I'm truly sorry... but based on what I grasped about your journey my conclusion stands. You may need less T4 and more T3, and finding the therapeutic dose takes time...many months, rather than weeks

Tatty, to what were you referring that needs a "heads up" that could only be explained by way of a cryptic "a paper trail"....it sounded like a warning that I had made a serious error. I'm not here to play games.....straight talking please because this is leaving me feeling very uncomfortable

[tattybogle in reply to DippyDame]

just letting you know higher T3 doses andT3 only had been tried previously as i'm aware how easy it would be to miss without reading through a lot of prior posts, Somewhere in susie's previous posting history when she was struggling i think i did manage to put together a dose history/ timeline with blood results/ symptoms , but i would have difficulty finding it again. Sorry i can't be more help.

[DippyDame in reply to tattybogle]

I was aware that susiebow had taken higher doses of T3.....I had already replied to some of her earlier posts

I wasn't asking for help, I was asking you to explain your cryptic message to me saying "there was problems". That could cover all manner of issues and it left me concerned that I had missed something and had badly misjudged the situation....not a comfortable place to be. I just wanted to understand

Take care x

[RedApple Administrator]

TSh 3.25 would be too high for many people on levothyroxine. But that doesn't mean it's not right for you. So don't assume you should increase your dose based only on the TSH number.

The important question, is how do you feel on your current dose?

[SlowDragon Administrator]

obviously you need to get FULL thyroid and vitamin testing

which brand of levothyroxine are you using

TSH is high for someone on levothyroxine

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...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

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

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

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