Advice please

[Clara9]

Latest results 4 weeks ago on 100+20

Tsh 0.01

Ft3 6.0 (3.6-6.3)

Ft4 16(12-22)

Dr wanted me to lower levo from 100 to 75 (which I did). And T3 from 20 to 10 (which I didn't). I'm feeling worse more irritated, no energy to go running, more sad etc. My plan was to lower T4 and maybe increase T3 after a while. Dr said to have tests done after 6 weeks and it's been 4. I don't feel like being like this for another 2 weeks and therefore considering having tests in Monday and then increasing dose of t3 and se how that goes and if not good increasing back to 100+20. What's your advice? Do you think I should wait another 2 went to get the test right?

[pennyannie]

Hello Clara

If you felt well on the original dose, why change anything ?

Your TSH will be suppressed, T3 suppresses TSH.

Your T3 is in range as is your T4.

How long did you leave between last dose of T3 and blood test ?

[Clara9 in reply to pennyannie]

12h and 24 för levo

[pennyannie in reply to Clara9]

Excellent, I don't see a problem with your results - '

except maybe with a cynical hat on, and having to pay for the T3 out my NHS doctor's budget !!!

[Clara9 in reply to pennyannie]

I'm not in the UK so don't worry. 😉

Do you think I could have the tests done now and then try to raise T3 a bit? Last time I switched some levo for T3 I felt better. And I've read that some people do.

[pennyannie in reply to Clara9]

It's all trial and error, we are all different, and I do not know how you are feeling. You are fortunate in that you have T3 and T4 to hand, and you know better than anybody else how you are feeling.

Am I right in thinking you have only dropped 25 T4 ?

This dose equates with about 6.25 T3.

I would imagine a blood test now will show some difference, but it's more about how you are feeling.

It sounds as though this dose reduction isn't helping you, so why not go back up, or swap the T4 for T3

How were you feeing before the doctor suggested this dose decrease ?

[Clara9 in reply to pennyannie]

Ok. I just wanted to see if I could fell even better.

[Hidden]

Your doctor seems to go by the TSH only. That's useless once on T3+T4. You need to go by symptom-relief and if you are feeling well and are symptom-free, you should not care so much about your labs. Only if you don't feel well you need to look at your free Ts (both FT3 and FT4). BUT DON'T CARE ABOUT THE TSH!!!

Your FTs suggest you were on a good dose for you, and could possibly even raise it a little more if need be.

The TSH will most likely be suppressed if taking T3, which is why you should disregard it and go by symptoms.

Don't let any doctor talk you into lowering meds simply because your TSH is below range when both your FTs are in range...that is probably one of the worst mistakes you can do as a thyroid patient, especially when on combination treatment (T3 + T4)!!! I CANNOT STRESS THIS ENOUGH!

[Clara9 in reply to Hidden]

The problem is that she already lowered my dose to what she thinks I should take. (75+10)

[greygoose]

Getting tested after only four weeks will not show you the full extent of the differences reducing your dose has made. So, not really much point.

Why are you taking T3? Because you don't convert well? If so, reducing levo by 25 mcg probably hasn't made much difference to your FT3, so increasing your T3 will probably send you over the top. Why did you consent to the reduction?

[Clara9 in reply to greygoose]

She just sent a letter and changed the dose on my prescription. I thought that I could try lowering T4 and add another 5mcg T3 too see if I felt even better. Last time I did I felt better. I know Shaw's also says she did.

[greygoose in reply to Clara9]

Yes, but things will only make you feel better if you need them. Your FT3 is already top of the range, so increasing it is not necessarily going to make you feel better. More is not better. Too much makes you even worse.

[Clara9 in reply to greygoose]

I didn't mean only increasing T3 but also defeating T4 so hopefully ft3 will stay similar

[greygoose in reply to Clara9]

As I said, that would depend on how well you convert. Do you know how well you convert?

[Clara9 in reply to greygoose]

A bit. When I increased T4 with 25, when on only t4, My ft3 rose from 4.2-4.9. But during those weeks I started taking selenium also so m not sure if that helped too. Do you think it's a good idea to have tests done now to see where ft3 is? And then either increase T3 or T4 back up? I will have to fight the doc whatever I do. But I don't really feel like being like this for another 2 weeks...

[greygoose in reply to Clara9]

I think that, as it was reducing your levo that made you feel bad, the best thing to do is increase your levo back to your old dose. If you start messing around with your T3 dose, you could get yourself completely tied up in knots which will take ages to sort out again. If you felt good on 100 mcg levo and 20 mcg T3, then your doctor should have left you one that.

Your labs were fine on that dose but doctors tend to panic when they see a suppressed TSH. Ask him why he's so frightened of the suppressed TSH. What he thinks is going to happen when it's suppressed. If he starts mumbling about heart attacks and osteoporosis, ask him for proof. Because, all that you've read says that the TSH has nothing to do with hearts and bones. It has two jobs: stimulating the thyroid to make hormone and stimulating T4 to T3. And as you are taking exogenous T4 and T3, you don't need it to do either of those things, and that's why the pituitary has stopped making it. You do not need it. And, making you ill in an attempt to get your TSH back into range is totally illogical.

[Hidden in reply to greygoose]

Plus, a TSH that has been suppressed for a long time may not normalise even if you go off T3 and back on T4 meds...I tried that in order to make a doctor happy but my TSH wouldn't budge at all (it has been suppressed for over 15 years). I later found out that long-term TSH suppression can cause the HPA axis to become permanently deregulated meaning your TSH won't end up in range no matter what you do. I am not saying that would automatically happen to you, just that going off or reducing meds just to try to get your TSH back in range is a bad idea...for many reasons, plus may not even work! Doctors in general have absolutely no clue about how the thyroid works and believe only the TSH is important.

[greygoose in reply to Hidden]

Absolutely right.

[Hidden in reply to Hidden]

Also, I'd like to urge you and everyone else NOT to start messing with your thyroid meds once you feel fine simply because doctors believe a suppressed TSH is dangerous. I was stupid enough to go off NDT and back on T4 only (not because I believe a suppressed TSH is dangerous but because I wanted the doctor to shut up and leave me alone). Not only did my TSH not normalise but, six months later, I'm still struggling to get back to where I once was. It's not worth it, IMHO. It seems even a short period as hypo (and T4 only drugs keep me hypo since I am a poor converter) can have long-term effects and mess you up pretty badly, also because low thyroid will have a knock-on effect on other hormones such as adrenal and sex hormones. I've also developed other symptoms you commonly see in hypothyroid people, such as high blood pressure. If you feel overmedicated and this is backed up by labs, fine (and by that, I mean out-of-range FT3 and possibly FT4). You can then lower your meds and see how you feel after a while. But DON'T let any doctor talk you into lowering meds simply because of your TSH.

[janeroar]

Hello Clara

As your consultant hasn’t consulted with you and only sent you a letter instructing you to reduce your meds, I would write back and tell her you feel dreadful after you tried the reduction she suggested. I, like you, would not contemplate 2 weeks in your present state and would resume your previous dose if you felt well on it.

[SlowDragon Administrator]

Many of us need good FT4 and FT3

Reducing Levothyroxine is likely to have dropped FT4 to bottom of range or even below range

Suggest you try reinstating 100mcg Levothyroxine and retest after 6-8 weeks

TSH is almost always suppressed on any dose of T3

[Clara9 in reply to SlowDragon]

Ok, so you don't think it would be a good idea to increase T3 by 5mcg instead?

[Hidden in reply to Clara9]

Only you know what you feel best on. Also, thyroid hormone needs are not static but may change over time.

What we are trying to say is that you should disregard your TSH when taking T3 and go by the free Ts plus symptom-relief. Some need both free Ts to be high in range, others feel fine on low-normal FT4 levels as long as their FT3 levels are in the upper part of range. So no way of telling what works best for you. However, the fact that you felt better on your previous dose is an indication you are currently under medicated.

[SlowDragon Administrator in reply to Clara9]

Well we are all different

Some do better on just T3 - results would probably show almost non existent FT4 and FT3 near top of range

Some do better on mainly T3 plus small amount of Levothyroxine - results would probably show in range, but low FT4 and FT3 near top of range

Some do better on mainly Levothyroxine plus small dose of T3- results would probably show FT4 in top third of range and FT3 in top third of range

Personally I need last option- good FT4 and FT3. I found that when Levothyroxine was reduced by 25mcg and T3 added, symptoms returned as FT4 level dropped near bottom of range. Experimenting, I slowly increased Levothyroxine back up and symptoms improved.

[Teresamarie]

You could do every other day on your levo dose....just a thought. Good luck to you and many hugs.

[Catseyes235]

I’ve been in same position of one doc being guided by TSH reading being same as yours and his immediate conclusion being that I am over medicated but a reduction in T4 simply made me have symptoms I remembered from previous hypo times. My other doctor in the past however noted my reading was low but has always asked how I was feeling and if I was fine he was happy with this. You are lucky to have T3 available unlike in UK where pharma company increased the price so much that NHS don’t prescribe it. Good luck and hope you feel better soon.

[Caze]

Same thing just happened to me. Endo wants to reduce meds because TSH suppressed taking 100 T4 and 12.5 T3 even though T4 is only 12 and T3, 5 - so not over medicated. Not taking any notice - Endo reluctantly agreed to leave things fr 3 months. Will do private test end of Oct and adjust accordingly.