Should I be concerned about these symptoms? Maybe T3 is not for me?

[Mickeydooley]

My latest results showed that my TSH was suppressed but my t3 and T4 levels were 62% and 32% through range respectively. I’ve been feeling warmer and sleeping better than I have in years but I notice when I’m lying in bed that my heart beat is irregular and I have also been experiencing shaking, although that has eased somewhat recently. (I should also say that I do feel there’s some room for improvement on energy levels. I still feel very tired each afternoon and fight the urge to sleep.) My endo warned me about atrial fibrillation with a suppressed TSH and now I’m a bit concerned. Maybe T3 treatment is not for me? I’m afraid to tell him about these symptoms in case he takes me off t3 but maybe it would be for the best?

[SlowDragon Administrator]

Your FT4 looks rather too low ....looking at last post about yet another endocrinologist only looking at TSH ...

Your FT3 is well within range, how do you take your T3? As single dose or as 2 or 3 smaller doses?

FT4 was already on low side. You almost certainly don't want to reduce Levothyroxine. May need dose increase in Levothyroxine

Are your vitamin levels optimal ?

Suggest you buy a Fitbit if you don't have one already

[Mickeydooley in reply to SlowDragon]

Last tests in July suggested all vitamins ok but vit d a bit low. I have a Fitbit and resting pulse between 65 and 70. Basal temp averaging 36 degrees.

I take my t3 in two doses. 10 mcg along with Levo about 4am and then 10mcg about 3.30/4pm

I’m just worried about erratic heart beat and shaking. Afraid to mention to endo but don’t know if it’s the t3. I’m getting fed up with these symptoms and am close to asking to give up on the t3 trial.

[greygoose in reply to Mickeydooley]

That would be a shame. And, your endo would be only too delighted to take you off T3! Don't give him that pleasure. When my heart gets a bit like that, I start taking magnesium glycinate, and that calms it down. And I take a lot more T3 than you, I bet! Although, recently, I did find I needed to reduce it by 6.25 mcg, and everything feels a lot better.

It could possibly be that that level of FT3 is a bit too high for you. But, that doesn't mean you need to come off T3 completely - that would be like throwing the baby out with the bath water! Just reduce slightly. You don't need to get your endo involved, they always over-react, just do it yourself and see how you feel.

It's totally illogical to think that you will find a dose that will suit you for the rest of your life. Needs vary, circumstances, diet, level of activity, general health, etc. etc. etc. can all affect the amount of T3 we need. So, it's not surprising if you feel the need to reduce it occasionally. But, if your endo reduces your prescription, you'll have a hell of a job getting it raised again should you feel the need!

[Mickeydooley in reply to greygoose]

Thanks Greygoose. That’s what I thought which is why I didn’t mention the shakes at the last appointment. I wasn’t sure what was causing it and didn’t want him jumping on it as a reason to stop the t3 then.

When I was initially put on t3 the endo reduced my Levo at the same time and when I was retested both t3 and t4 levels had deteriorated so he increased both again. I think the shakes only started on the increased dose but I had a period of severe stress and bereavement so I initially thought that was the cause. I’m currently taking 75 mcg Levo and 20 mcg t3. How much do you suggest I reduce my t3 by? 5mcg? At next appointment do you think I should ask for an increase in Levo?

[greygoose in reply to Mickeydooley]

That could have been his mistake. He shouldn't have increased both the T3 and the T4 at the same time. It's one or the other. Maybe that caused the shaking.

5 mcg would be a good amount to reduce by, yes. Give things time to settle a bit before you increase the levo again.

[Mickeydooley in reply to greygoose]

I’ll try that. Thanks. I’m not due back there until near the end of January so that gives me time to assess the situation. Can’t tell you how grateful I am for all the support and advice on this forum. Thanks all.

[greygoose in reply to Mickeydooley]

You're welcome.

[Mickeydooley in reply to greygoose]

I’ve just received my last test results after having reduced my t3 by 5mcg to see if my shakes would stop, as you suggested. I felt very hypo when I went for my appointment and am surprised to learn that although my TSH is still suppressed (no surprise there!) my t3 (and T4) levels actually rose slightly! Not much but I don’t understand why.

[greygoose in reply to Mickeydooley]

Do you always do your testing at the same time of day and fasting?

There are bound to be some variations in level. It's unrealistic to expect the exact same results every time you test. Depends how much hormone you use, that will vary. If it's just a slight difference then it's of no significance. Can't really say without seeing the numbers.

[Mickeydooley in reply to greygoose]

My tests are always done at the same time of day but the endo clinic only operates in the afternoon. I do all tests under same conditions. I had been taking 75mcg levo and 20mcg t3 but reduced to 15 mcg to see if shakes would stop. They didn’t. I’m more and more convinced that the shakes are to do with low blood sugar.

Results on 75/20

TSH 0.02

T3 5.4 (3.1-6.8) 62% through range

T4 15.2 (12-22) 32% through range

Results on 75/15 (same ranges)

TSH 0.02

T3 5.5 (65%)

T4 15.6 (36%)

[greygoose in reply to Mickeydooley]

The differences are so slight, it's irrelevant. I wouldn't worry about it, if I were you. You did retest pretty soon after reducing the dose of T3, normally one would wait six weeks.

[Mickeydooley in reply to greygoose]

I wondered about that. I’ve increased my dose back to 20mcg because I was feeling bad again and it seems to have helped with warmth and sleeping so I’ll keep on this dose. He’ll see me again in 4 months. Hopefully things will have settled by then. Thank you again for your help.

[greygoose in reply to Mickeydooley]

You're welcome.

[SlowDragon Administrator in reply to Mickeydooley]

Personally I find it better to split the T3 into 3 doses....

10mcg at 7am, 5mcg at 3pm and 5mcg at 11pm (8 hour gaps between doses)

But as Greygoose says, perhaps reduce T3 by 5mcg and see how you go

Only ever increase Levothyroxine or T3...not both at same time

Next blood test...as early as possible in morning before eating or drinking anything other than water and make sure last dose Levothyroxine 24 hours prior to blood test and T3 last dose 8-12 hours before blood test

Vitamin D needs to be at least around 80nmol and around 100nmol may be better. Magnesium supplements may steady heartbeat

[Mickeydooley in reply to SlowDragon]

You had mentioned taking the dose split into three and I did try that for a while but I didn’t sleep very well. Could have been a coincidence. I find the shakes are worse in the morning and I’m fine by the afternoon so I thought I’d try 5mcg in the morning and 10 in the afternoon. (However the shaking has eased and some days I’m absolutely fine. Perhaps my system is getting used to the increase in Levo and t3 together?). I also tend to eat later in the evening and timings can be difficult, if I even remember to take it then! I’ll have to experiment a little. I wonder if the shakes could be exacerbated by the fact that I find it very hard to eat enough at the moment? I have lost my appetite and only manage very small portions of anything, hence the late evening food.

The endo clinic only operates in the afternoon so not a lot I can do about the timing of the appointment. I do stick to the 8 to 12 and 24 hours rule of last dosing.

I will work on the vit d and try to remember my magnesium at night.

Thanks for all the tips.

[SlowDragon Administrator in reply to Mickeydooley]

Shaking in morning sounds like cortisol

Cortisol has strong diurnal variation. Feeling better by afternoon or evening is often low cortisol in morning

As you have had very stressful time recently this should slowly improve

See how you get on adding magnesium

Only add one supplement, or make one change at a time

A daily adrenal cocktail might help support adrenals

stopthethyroidmadness.com/a...

[shaws Administrator in reply to Mickeydooley]

For information:-

thyroiduk.org.uk/tuk/thyroi...

hormonerestoration.com/

The fact is that TSH (thyroid stimulating hormone) is from the pituitary gland and rises if the thyroid gland is having problems and it tries to flag it up so it provides more hormones. Excerpt from above firstlink:

"Dear Thyroid Patients: If you have thyroid gland failure--primary hypothyroidism--your doctor is giving you a dose of levothyroxine that normalizes your thyroid stimulating hormone (TSH) level. Abundant research shows that this practice usually does not restore euthyroidism--sufficient T3 effect in all tissues of the body. It fails particularly badly in persons who have had their thyroid gland removed.

TSH is not a thyroid hormone and is not an appropriate guide to thyroid replacement therapy.

The hypothalamic-pituitary secretion of TSH did not evolve to tell physicians what dose of inactive levothyroxine a person should swallow every day. A low or suppressed TSH on replacement therapy is not the same thing as a low TSH in primary hyperthyroidism. IF you continue to suffer from the symptoms of hypothyroidism, you have the right to demand that your physician give you more effective T4/T3 (inactive/active) thyroid replacement therapy. Your physician can either add sufficient T3 (10 to 20mcgs) to your T4 dose, or lower your T4 dose while adding the T3. The most convenient form of T4/T3 therapy, with a 4:1 ratio, is natural desiccated thyroid (NDT-- Armour, NP Thyroid, Nature-Throid). If you have persistent symptoms, ask your physician change you to NDT and adjust the dose to keep the TSH at the bottom of its range-- when you have the blood drawn in the morning prior to your daily dose. This may be sufficient treatment, but IF you continue to have persisting hypothyroid symptoms, and no hyperthyroid symptoms, ask your physician to increase the dose to see if your symptoms will improve, even if the TSH becomes low or suppressed. You can prove to your physician that you're not hyperthyroid by the facts that you have no symptoms of hyperthyroidism and your free T4 and free T3 levels are normal in the morning, prior to your daily dose. They may even be below the middle of their ranges. Your free T3 will be high for several hours after your morning T4/T3 dose, but this is normal with this therapy and produces no problems. You should insist that testing be done prior to your daily dose, as recommended by professional guidelines. If you have central hypothyroidism, the TSH will necessarily be low or completely suppressed on T4/T3 therapy. In all cases, your physician must treat you according to your signs and symptoms first, and the free T4 and free T3 levels second."

'How to Safely Get well with thyroid hormones"

naturalthyroidsolutions.com...

[Mickeydooley in reply to shaws]

Very interesting read. Just wasn’t sure (until last tests) whether my symptoms were from over medication but it seems not. Thanks for the link and the info.

[shaws Administrator in reply to Mickeydooley]

It is a slow learning curve because some people are fine on 100mcg of levo and others can be very unwell. Some need options (which are rarely prescribed these days). The ultimate aim is to relieve our symptoms so that we feel we have a normal life and don't even think about changing dose.

Always take tablet with one full glass of water, on an empty stomach and wait an hour before eating.

[Convostarter12]

Sounds like your body can't handle the dose. Best to probably lower, if hearts keeps palpitating, I wouldn't take it, not matter what my doctor says. You can have a heart attack. You need to think for yourself.