Is this a possible scenario?: T3. Again. Sorry! I... - Thyroid UK

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Is this a possible scenario?

Murphysmum profile image
8 Replies

T3. Again. Sorry!

I’ve been hovering back n forth between whether to increase or lower my T3. Ive posted quite a lot recently but a quick recap..

T4/T3 started March 2019. Initially felt amazing but only lasted 6 weeks before symptoms returned. Increased by 5mcg and the same happened.

Fast forward to now and I’m now on 65mcg T3 split 2x per day and 25mcg levo 2x per week. I only made the last increase four days ago. I have tried no levo and then 1x per week but didn’t feel well.

I’m confused as although every recent increase has helped, and finally my frozen shoulder has gone, I cannot shift the muscle weakness and heavy limbs. Also recently my eyes have become more.... fuzzy! Fuzzy spells anyway.

Tonight I have had a high heart rate (70-80, normal 50s) and my temp is up. I also am have increase heavy limb feeling.

This got me to thinking. The time I felt best (loads of energy, no weakness, no heavy limbs but still frozen shoulder and other “arthritic feeling” joints) was back in the summer when I was in 20mcg T3. I forget the levo dose but it would be around 50mcg I think. I then went on holiday where it was hot and a few days later felt worse, lots of palps (a “low” thing for me normally) and heavy limbs etc again. The heat seemed to help the sore joints but did nothing for the frozen shoulder.

I assumed at the time I needed to increase again. I am now wondering was I wrong??? Did I actually need less T3 and the symptoms were “over” symptoms?

Then of course I kept increasing each time I felt I wasn’t getting any benefit.

As I’ve posted before, I’ve never had any “over” symptoms. My bp is very slightly raised at the moment but as I am a bit over weight and increasingly unfit it may just be this. Temp has never moved though I feel cold less often and frequently warm in the early morning and my hr is between 50-60 bpm resting. It was 40-50 pre T3. Recently I’ve had a few dizzy spells and occasional strong heart beats.

I haven’t done bloods in ages as I was top of range for T3 last time and that was on around 25mcg. It’ll be well over now but I still have symptoms.

Any ideas? Could I have misinterpreted way back then?

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Murphysmum
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8 Replies
minkjaere profile image
minkjaere

Hi,

I think the best thing to do is to have your blood checked. I had Grave's and at some point I thought i needed more neo mercazole (to block) since i thought what i was feeling was that my T4 was increasing. After increasing the dose i felt better, but after some weeks it will be bad again so i increased the dose again, only to find out after the blood test that i was over medicated.

This is a tricky illness, so it is better to check first the blood before increasing /lowering your dose. I don't know there, but my doctor was monitoring my blood every 3 weeks, and i was on a very small dosage.

Jodypody profile image
Jodypody

You mentioned you were on holiday. You need less T3 in warmer climates so I’m guessing you were overdosed

silverfox7 profile image
silverfox7

I’ve never added un T3 but I do take NDT and I remember when I first started that I raised very slowly but after a while aibrealised was no longer feeling anything for the increase so I stop as was seeing Endo in a few days. My readings were slightly over and he dropped my 3 grains down to 1.75 and I thought that was too much but I was told to stop for a couple of days then start the lower dose andche was spot on so I suspect you are over medicated.

Get tested ASAP and take it from there. I was also told that FT3 should be high in the range but never over.

Lalatoot profile image
Lalatoot

I think you need to stop as you say and yes I think you may have misinterpreted. When we have been ill it is easy to see T3 as the solution. However the solution is to be found in taking things slowly to find balance and harmony. We also need regular blood tests to guide our interpretations of our physical symptoms after any change. Knowing where our FT4 and FT3 levels are important so that we can replicate good times when perhaps our lifestyles change or the medication ceases to work in the same way. If you know that you feel well when FT4 is 60% through range and FT3 70% through range for example then you can aim to maintain those levels.

For those on levo and lio it is a case of taking it low and slow. Changing one at a time. Giving the body time to catch up after each change. Looking at blood results and seeing where FT4 is in relation to FT3 and how you feel at that level. It is also a personal journey as some feel well with FT3 at the top of the range and FT4 at the bottom of the range; others need them more balanced near the top of both ranges.

Then there are those on T3 only - I cannot advise about that as I know nothing about that journey.

DippyDame profile image
DippyDame

Fine tuning a T3-only dose isn't always straightforward and distinguishing between over and under can be difficult. Like you I had/have no obvious symptoms of "over"...and I've been dosing by symptons and "numbers"... temp, heart rate and BP.

I gave up on labs because on large doses of T3 only the FT3 soars and FT4 and TSH plunge. ...to be expected

If you have RTH (resistance to thyroid hormone) the high FT3 indicates the T3 in the blood....but, that doesn't indicate how much of that T3 is reaching the cells and becoming active there. The T3 that hasn't overcome the resistance and which remains in the blood will be excreted by the bladder and bowel.

If you can tolerate a large dose of T3 the chances are you have RTH.

Signs of overmedication arise when too much T3 is reaching cellular level and there is no test to measure this which is why we rely on symptoms and "numbers".....and often trial and error.

70 - 80 really isn't a heart rate to be concerned about...a normal resting heart rate is 60 - 100. I prefer mine to be around 75/80. The heart needs adequate T3.

Low heart rate (40 -50) may have caused the dizzy spells.

I suspect that as the T3 receptors slowly begin to respond to increased doses of T3 the cellular level builds up until eventually a smaller dose is enough.

I think I may now have reached that point.....after 18 months spent titrating T3 only!

I reduced my dose last night (I take one dose at bedtime....splitting didn't work for me) so now need to wait at least 2 weeks to see how things pan out.

It's important to maintain a level dose at all stages ( eg no skipping doses!) the cells need an adequate, steady and constant supply of T3 .

The body also needs time to adjust to a dose change....no sudden increases and/or decreases

Why did you decide on 25mcg levo twice a week....this isn't providing the body with a steady supply of hormone so I'mnot sure how that might affect things.

Maybe you need to try T3 only again but increase your dose slightly from 65mcg

It would be wonderful if one cure suited us all....but mother nature s clearly determined to kick that idea into the long grass!

I'm not a medic just a fellow traveller along this rocky thyroid road!

Best...

DD

I'm only on levo so can't advise about T3, but a "Normal" heart rate of in the 50s is very low, which, I expect you know, is a symptom of hypothyroidism. 70-80 is normal for most people.

get hot flushes and my "Normal" resting heart rate is around the mid 80s or sometimes above. It almost seems as if my heart is slightly "Hyper" but my brain and most of the rest of my body seem still definitely hypo.

Apparently the adrenals try to compensate when you are hypo, which might explain it.

"T4/T3 started March 2019. Initially felt amazing but only lasted 6 weeks before symptoms returned. Increased by 5mcg and the same happened."

Again, don't know about T3 but that is my usual pattern on Levo. These days it isn't as clear, but there is still normally a dip around 5-5 weeks after an increase. With Levo , it seems to mean you are ready for a further increase. As if your body has had time to get used to the increase and decided it isn't enough.

I would guess you may be either slightly undermedicated still, or the problem is with the nutrients. Joint pain may be due to lack of vitamin D, which would probably also explain the reaction when on holiday.

But as DippyDame said, "The body also needs time to adjust to a dose change....no sudden increases and/or decreases"

Without recent test results it's difficult to know what's going on, but the first thing is to stay on the same regular and consistent dosage for several weeks. And of course only change one thing at a time.

endomad profile image
endomad

Heavy limbs is often low potassium and B12, worth getting it tested. I still go through phases of fatigue and muscle weakness, everything has to be balanced, I am at about 90% the old me on good days but that can sink to 50% when I crash. I was told that if you are over medicated it feels so bad that you know, if you have no signs/tremors of being over medicated then maybe you need to try a small increase. Its all trial and error. x

Not to scare you but I have Hashimoto’s, Sjögren’s with overlap connective tissue disease with small fibre neuropathy, Raynaud’s and Erythromelagia (rare). I take Losartan for hypertension and am overweight and newly glucose intolerant despite low carb gluten free diet.

I’ve had strangely heavy (leaden) limbs for the past 8 years along with what I thought was arthritis - but turns out to be fluid retention/ oedema everywhere. I have recently pushed for my Levothyroxine dose to be raised from 125mcg to 150mcg because I thought this might help my energy levels. It has definitely helped my brain function but I’m still apparently waterlogged deep within and on the surface - according to my excellent masseur and a top vascular med professor. I’m being tested for pulmonary hypertension by studying my lung function tel this week and then to have an echocardiogram.

Meanwhile I’ve been researching myself online because my leaden limbs are so disabling wheh I’m still - but EMG is always entirely normal. I found this link below and have decided that this is a vascular or endocrine issue for me rather than neurological/ muscular as has previously been presumed.

I’m not saying it’s same for you of course but I hope this link helps.

“1. Sensational Heaviness of a Limb

This is one of the earliest signs of lymphedema. During stage zero of lymphedema, the symptoms will develop slowly. The apparent symptom of swelling will not be present yet. However, the protein molecules that are not being filtered out properly will start to accumulate underneath your skin. Even though the limb looks presumably normal on the outside, the extra water will pull into the affected area and cause heaviness.”

facty.com/ailments/body/10-...

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