Reduced Levothyroxine now feeling breathless on... - Thyroid UK

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Reduced Levothyroxine now feeling breathless on occasion..

Sarahlouise1980 profile image
8 Replies

I reduced my Levothyroxine down from 125mcg to alternating 125/100mcg. My last blood test on 125mcg a day was TSH 0.006 (0.38-5.0), free T4 13.6 (7.0-16.0) and free t3 5.9 (3.8-6.0). On the 125mcg a day I felt good. Since reducing I have on several occasions felt breathless with what I think are palpitations. This is not when I’ve been over exerting myself. I’ve never experienced this symptom before. Does it indicate I would be better leaving my dose at 125mcg a day? I have previously never taken less than 125mcg a day in the 20 plus years since being diagnosed. Any advice would be most welcomed.

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Sarahlouise1980 profile image
Sarahlouise1980
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fuchsia-pink profile image
fuchsia-pink

Why did you reduce? You weren't technically over-medicated before, albeit that TSH was suppressed. Suggest you go back - perhaps slowly, with say 125 Mon to Fri initially and see how you feel on that ... Good luck x

Sarahlouise1980 profile image
Sarahlouise1980 in reply to fuchsia-pink

Thank you for your reply! My gp said my results were good but I could reduce slightly if I wanted to so I thought I’d try it seeing as my free t3 level was quite high in range however I think I will increase back up to the 125mcg which is where I’ve felt best.

posthinking01 profile image
posthinking01

Hi there - although your results show you at the top end of the scale - I suppose if you aren't feeling any bad symptoms when on the higher dose - why reduce the dose and end up with symptoms - sometimes we just need to treat those symptoms. The fact your body is showing a bit of distress on the lower dose is that the adrenal glands are having to make up the extra needed to support you - it is balancing act - and boy what a difficult one at that sometimes - no wonder endocrinologists keep their heads down with the majority of us - it is such a complicated individual subject matter - thyroid/hormones imbalances. So why change it - if it ain't broke don't fix it as the saying goes . Remember magnesium for palps as that can help. Wishing you well again.

Hope this helps

A

Sarahlouise1980 profile image
Sarahlouise1980 in reply to posthinking01

Thank you so much for your detailed reply! I don’t seem to ever be able to drop my dose lower than 125mcg a day no matter what my bloods say without adverse effects. The breathless isn’t even on exertion either! x

posthinking01 profile image
posthinking01 in reply to Sarahlouise1980

HI there - I know I had the same and it was absolutely awful - very frightening - it is often surprising to find out that the adrenal glands control some aspect of the breathing.

I had exactly the same - I used to get so breathless I could not go up the stairs - and my issue was I was on too much - thyroid problems are so difficult an issue - because if you are on too much you can become breathless - lose your hair - feel exhausted - can't sleep etc. etc. - and if you are on too low a dose the exact same thing happens - so annoying - it took me a few years of extreme sweating - and I mean dripping - breathlessness and fatigue so bad I was slumped on the settee all day - to realise that NDT Armour and then ERFA did not agree with me - then I switched to ordinary Levo tablets and breathlessness stopped but then other symptoms started and I looked awful - always on the loo after taking the tablets - to realise that the tablets were not being absorbed I had a lactose problem - now on lactose free liquid and much better with breathing etc. - it is also worth remembering that Vitamin C is grabbed by the adrenals to keep you alive - it is a good idea to take Vitamin C to keep C levels at optimum level - however in saying that - because I am on steroids for other reasons - I kept on with my C and found it wasn't doing what it should do - I was going bright red and feeling over anxious - on doing some research - I found out that C can over stimulate the adrenal glands which will then cause adrenaline - my dear amazing body was saying - enough now - your adrenals are working OK you don't need to much now. So I lowered the dose just to keep my skin nice etc.

Whilst writing worth mentioning - Vitamin D can deplete magnesium levels - or the other way to look at it - Vitamin D collects calcium and magnesium is needed to dilute the bad effects this can have on the arterial system of the body.

Hope all this helps

A

jgreen5748 profile image
jgreen5748 in reply to posthinking01

Same for me, breathless and agitated when I was over medicated. I also had a feeling of anxiety.

greygoose profile image
greygoose in reply to Sarahlouise1980

Why would you even want to? What is the point of trying to lower your dose? Levo is not a drug, or something that you need to take a minimum of. Just take what you need.

You have already given the answer yourself - if you felt good on 125 mcg daily, that´s what you need for symptom-relief, end of story!

One thing that I often find lacking in the discussion about dosage vs labs is the following: labs will only show how much thyroid hormone is in your blood at any given moment, not what is available on cellular level...where thyroid hormone does its work.

In my own experience, symptom-relief is the best way to know when to decrease or increase your dose, and labs are only relevant for an initial diagnosis (I am now talking about hypothyroidism/Hashimoto´s which I have myself, as I don´t know enough about Graves and other thyroid disorders).

In the 20 years that I have been on thyroid hormone replacement, not once did I feel good when my doctor was happy with my lab results...only when I started self-medicating and going by symptom-relief did I achieve that. And, while on levo only, I never felt even slightly human until I reached a dose that made my TSH drop to <0.05...my doctor at the time almost had a heart attack.

I notice your FT3 is proportionally slightly higher than your FT4, so you seem to be converting T4 to T3 well (also supported by the fact that you felt well on 125 mcg). If you lower your levo, your FT3 levels will likely drop along with your FT4 levels, and you will start feeling more hypo. Your TSH might rise slightly, or even normalise, which may make your doctor happy but should NOT be your goal. Your goal should be symptom-relief, nothing else!!!

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