What should I do !!! , feeling terrible on thyroid meds

[MarAsh9]

Hello , this is my first post and I really need your advice

I was diagnosed last September with Subclinical hypothyroidism , started taking levothyroxin 50ug

My lab results were within the normal range BUT symptoms got WORSE

Fatigue

Moderate to severe muscle and joint pain all day long + killing pain on both my arms and weakness

Headaches

Weight gain

+ repeated infections ( UTIs , Flu )

Nausea and dizziness

Moodiness

Sensitive to light and loud noises

Then I tried to up my dose to 100 ug still didn’t feel any better consulted my doctor and he reduced my dose to half again just focusing on the labs and disregarding all the symptoms I had

Now , Trying introducing T3 meds , I’m taking 25ug levothyroxin + 5 ug cytomel at night time ( making sure it’s on empty stomach ) , I’ve been on these meds for a week and my symptoms don’t seem to subside

I am also taking vit D , calcium , zinc , selenium

My lab results before taking T3 ...

TSH : 0.110 ( 0.27-4.2 )

FT3: 4.16 ( 2.0-4.40 )

FT4 : 1:41 (0.93-1.70 )

What should I do next ... really want to feel well and healthy ...

Thank you in advance

[greygoose]

Hi MarAsh9, welcome to the forum.

So, those labs were done on 50 mcg or 100? If that was on 50 mcg, then it was a big mistake to increase your dose by another 50. Increases should only be by 25 mcg at a time, anyway, every six weeks. You will have gone over-range, and stressed your body at the same time. Not surprising you didn't feel well.

But, you don't give us any time-line on this. How long were you on 50 mcg? Did you get tested before increasing to 100? How long were you on 100? Then, how long on 50 mcg again? And, how long have you been on 50 + 5 mcg T3? Because that's a lot of changes in three months. Your poor body must be so confused! We need to stay on any one dose for at least six weeks, for the body to settle and the hormone to be fully synthesised. Nothing work fast with hormones. And it's not in the least unusual to fell worse when first starting levo. But, given time, and small increases, things improve.

Have you had your vit D, vit B12, folate and ferritin tested? If these are not optimal, your body won't be able to use thyroid hormone correctly. Plus, any deficiencies will create their own symptoms. So, if you haven't had them done then do ask your doctor to test them.

[2019Tattoo]

I have recently started on t3 and initially felt lots better ( eg sleep and digestion).

Previously I had spent the last 20 years just taking t4 medication and feeling low energy/ cold/ insomnia etc.

The positive effects of t3 ( taken in the last 6 months) then reduced recently, so I am in process of coming off t4 altogether and increasing t3.

For some people the t4 makes too much ‘Reverse t3’ apparently.

I am hazy about the science behind it but I am taking regular heart rate & temperature readings at home to ensure I increase t3 safely.

Perhaps you could read ‘Recovering with T3’ by Paul Robinson ?

[MarAsh9]

Hey , thank you for your replies

I took 50 ug levothyroxin for two months ( October , November ) and this was my test results at that time ( after 2 months ) :

TSH : 1.77 ( 0.35 - 4.94 )

FT3 : 3.24 ( 2 - 4.4 )

FT4 : 1.18 ( 0.93 - 1.6 )

Then 100 ug levothyroxin for a month ( December ) my test result was the one I wrote above in the post

TSH : 0.110 ( 0.27-4.2 )

FT3: 4.16 ( 2.0-4.40 )

FT4 : 1:41 (0.93-1.70 )

Then reduced to 50 ug for January

And now it’s been a week since I’m taking ( 25 ug levo + 5 ug cytomel )

Only had vit D and B12 tested

Vit D : 25.3 ( 30 - 100 )

B12 : 574 ( 187.0 - 883.0)

[danym in reply to MarAsh9]

how are you feeling? did your symptoms improve?

[greygoose]

OK, so staying on 50 mcg for two months was fine. But, then, you should have increased to 75 mcg, and stayed on that for 6 - 8 weeks, then retested. But, you didn't, and things got a bit frantic, after that, didn't they. Too many changes, and the changes too large.

So, now you're on 25 mcg levo and 5 mcg T3. I think the best thing you can do is stick to that dose for six weeks, and then retest. Give it time to settle, then retest. It takes at least six weeks to know if it's the right dose for you, or if you need to tweak it.

Your vit D is much too low. B12 is ok. You need your ferritin and folate tested.

I see you're taking vit D, but why are you taking calcium? Did you have your calcium tested? Calcium supplements are really not a good thing to take. And, just taking vit D increases your absorption of calcium from food. But, you also need to take vit K2 - MK7 to make sure that extra calcium goes into the bones and teeth, and doesn't build up in the soft tissues. You should also take magnesium with vit D, because they work together. If I were you, I would stop the calcium and get your level tested.

[Angel_of_the_North]

It doesn't look as though you needed T3 from those results as your conversion was fine. FT4 62.34% through range and FT3 90.00% through range. You need optimal ferritin, B12, folate and vit D, and I'd reduce the amount of T3. Two weeks is too early to tell anything, but I'd go back to the dose you were taking when those labs were done (or try 75mcg levo if those labs were on 100) and make sure that you are taking calcium 4 hours away from levo. Then retest in 6 weeks.

[SlowDragon Administrator]

It's common to feel worse after 4-6 weeks when changing dose, but you need to sit it out and wait at least 6-8 weeks before retesting bloods

Have you had thyroid antibodies tested?

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's.

Your vitamin D is clearly too low

Important to test folate and ferritin

Food intolerances are very common with Hashimoto's, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

[wellness1 in reply to SlowDragon]

"It's common to feel worse after 4-6 weeks when changing dose..."

I haven't seen this mentioned before. Is this documented in the literature with a known or theorised explanation? Or is this based on members' comments here? I'm just curious.

[SlowDragon Administrator in reply to wellness1]

Not ever seen it written down anywhere.

I always feel terrible roughly weeks 4-6 after any dose change.

[wellness1 in reply to SlowDragon]

Thanks SlowDragon, that's so interesting. The vagaries of the thyroid...

[SlowDragon Administrator]

How much vitamin D are you taking?

You need TPO and TG thyroid antibodies tested, plus ferritin and folate

thyroiduk.org.uk/tuk/about_...