Endo reduced Levo 3weeks ago now increased again

[Anic]

Endo reduced Levo by 50mcg a week. I was taking 550mcg a week. Ive had a total thyroidectomy due to thyroid cancer in 2015.

I did as directed by Endo and day 14 started very painful joints. So bad that cant do activities like before. I waited a week hoping it would improve. When things got worse ...I told Endo and she said:

“I'm not sure that reducing a little dose will have an immediate effect but happy for you to go up to the previos dose”

But wouldnt ok extra T3 to add on.

So two days now i have increased my Levo. How long should it take for these symptoms to improve.

Im so sorry i reduced it. Im on a small dose anyway but that was better than feeling this bad.

Look forward to your helpful replies

[threenme86]

You need T3. Have you ever tried a NDT? When doctors treat with ONLY t4 that's a major sign that you should run. T4 is simply the hormone that in normal bodies can convert to the biologically active hormone T3. You can live without T4 but will die without T3. I would get your Free T3 and Reverst T3 checked. It's all about the T3!

[Anic in reply to threenme86]

Thank you for yr reply threenme86

...before reducing

My T3 was 3.8 (range 2.6-6 pmol/L)

TSH was .25 (range 0.40-4 mIU/L)

T4 17.6 (range 9-19.0 pmol/L)

[Nanaedake]

What were, and what are your blood test results? You need to post TSH, FT3 and FT4 here along with dose taken at time of blood test to get best responses.

It's generally considered unwise to alter dose more than 25mcgs at a time either up or down. Your Endo doesn't sound like they know what they're doing. Even though it takes 6 to 8 weeks for a levothyroxine dose change to take full effect, the half life of levothyroxine is 7 days so you could start to feel effects of too low a dose after 14 days though not the full impact.

Are you already taking T3 along with levothyroxine? I wasn't clear from your post.

[Anic in reply to Nanaedake]

Thank you for yr reply Nanaedake

Endo would not give me T3

Her answer to my request:

“I would avoid T3 as it tends to cause a few problems.”

So cant get a script. GP wont if she dont...

Endo is highly qualified and is an academic as well

Anyway, i will be trying to get a second opinion

Im in Australia by the way

[pennyannie in reply to Anic]

Hello Anic

Can I just add a fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1.T2 and calcitonin plus a measurable level of T3 and T4 :

This level of T3 is said to at around 10 mcg daily and the T4 at around 100 mcg daily :

Synthetic T4 is is storage hormone and needs to be converted into T3 which is the active hormone that the body runs on, and low T3 gives you the symptoms of hypothyroidism whereas high T3 gives you the symptoms of hyperthyroidism and all we need to do is find out where on this sliding T3 scale, you feel at your very best.

Synthetic T3 - Liothyronine is said to be about 4 times more powerful than T4 and the average person needs and utilises about 50 T3 daily just to function.

As you haven't a thyroid you have " lost " your own thyroid production, and in effect, " lost " you own T3 production which works out at about 20 % of your overall well being.

Some people can " get by " on T4 alone, some people need a little T3 added to kick start their metabolism, whilst others need T3 only medication.

No thyroid hormone replacement works well if your core strength of vitamins and minerals are not maintained at optimal levels and ferritin, folate, B12 and vitamin D are all needed to be " up there " in the ranges. I myself have found I feel at my best when my ferritin is at around 100 - others will have their own different bench mark.

I became very ill on T4 only treatment about 8 years after thyroid ablation with RAI for Graves Disease - and found myself on this site reading other peoples posts and answers and realised it wasn't " just me " .

I failed to acquire NDT and thenT3 through the appropriate channels and decided to self source as things couldn't have got much worse, and I seriously thought how can this be happening to me ? As here I am having to resort to underhand, questionable measures, to buy some medicine to repair my own health and not rely on the people who are meant to know, and there to help me, my doctor and the specialists in the hospital ???

Adding a little Liothyronine to a slightly lowered dose of T4 helped me - light bulb came on in my befuddled brain and I could think clearly again.

I also purchased Natural Desiccated Thyroid as by now I thought " in or a penny, in for a pound - try anything and everything " and that also worked, and for me, and that is where I have stayed.

NDT feels softer on my body, and it's taken me coming up to 2 years to get back to where I am now - I'm still a work in progress, but there has been considerable progress and now I feel more able to get on with the rest of my life, and not watch it pass me by from behind a window.

It is a massive learning curve, as all that you expected and believed in might end up being turned upside down, but there are over 112K people on this one website, all looking for help as the current system is failing us.

When you feel like it, check out the Thyroid uk website as this is the charity who support this amazing forum, become am member, start learning what you can do for yourself and it's only small steps, at your pace, on foot in front of the other, and use this forum for back up and advice as you too regain your health.

I'm with Graves Disease, post thyroid ablation with RAI and now manage lingering Graves, thyroid eye disease and hypothyroidism :

[Anic in reply to pennyannie]

Thank you for your reply and advice. Some of your description of how you felt sounds so like mine. I have had such trust innthe past in Specialists and GPs that it id so hard to take a step on my own. I need to have more courage to take that first step.

This forum is so generous and giving and i appreciate everyones input and support.

I will take that step and hope to be able to help myself improve my health.

[fuchsia-pink in reply to Anic]

I've never heard of T3 meds "causing a few problems" - does she have a technical paper to back that up?

Here in the UK, I'd say the main T3 "problems" are the outrageous cost, the reluctance of so many endos to prescribe it because they don't understand it or believe it can help (despite all the people who do well on it) ... and a few people who take it not because they are poor converters but because they think it is a "miracle pill" or will guarantee weight loss and are then disappointed.

I'd say you need to try and get a T3-friendly endo; as SlowDragon says, your latest blood results def show poor conversion ... Good luck x

[Anic in reply to fuchsia-pink]

Thank you fucha-pink i will tryand find an Endo more in tune, not easy.

[threenme86 in reply to Anic]

Medical school only teaches them about the T4. You have to get a new doctor that knows what they’re doing. I’ve gone through so many family doctors and endos.... you have to get someone else. Your life depends on it. Your labs look good before the reduction and if you felt better then you need to go back to that dose.

[Nanaedake in reply to Anic]

Sorry, misread post and Tattybogle picked it up, dose reduction was 50mcg per week? So that's reasonable but clearly hasn't helped. Still think Endo doesn't know much.

If vitamin levels are low you're going to feel unwell and tweaking levo dose will not help those symptoms. Might make them worse if undermedicated.

[tattybogle in reply to Nanaedake]

Anic's dose was reduced by 50 mcg a week, not 50mcg a day. (So only about 7mcg a day less , so quite reasonable in theory), Sadly made things worse .

I agree 14 day's is enough to notice even a very small reduction, (i notice subtle changes within 2 days and really know about it after about 4, even on just Levo when reducing by only 12.5mcg /day)

[Anic in reply to tattybogle]

Thanks tattybogle. I know its a small drop but im not on much so its a bit further and i was probably under dosed anyway. I shouldt have waited a week getting from bad to worse.

Ive increased dose now but wondering how long it will take to feel better, at least like before change in dose?

[tattybogle in reply to Anic]

Sadly i can't answer that, cos i've been on reduced doses for months not weeks, and only increased to half way back up anyway. So in my case i'm not back to where i was before the reducing game started and i have to account for the negative effects on fitness and motivation of so much time at lower activity levels.

But i would hope that since it's only been a couple of weeks on lower dose for you , you'll get back to where you were within a few more weeks. You haven't been reduced for long enough to become really unfit , so hopefully it's a hiccup, not a car crash

[Anic in reply to tattybogle]

Thanks again tattyboogle. I hope you get back to good health soon too.

[SlowDragon Administrator]

The aim of levothyroxine is to increase dose upwards until Ft4 is in top third of range and Ft3 at least half way through range (regardless of how low TSH is) ...important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works

Most people, when adequately treated will have Ft3 and Ft4 at least 50-60% through range

Your Ft4 is 86% through range

But Ft3 is only 35% through range

Helpful calculator for working out percentage through range

chorobytarczycy.eu/kalkulator

Essential to regularly retest vitamin D, folate, ferritin and B12

Have you had these tested?

Low Ft3 leads to low vitamin levels, low Vitamin levels tends to lower TSH and cause poor conversion of Ft4 to Ft3

Improving low vitamin levels by supplementing can help improve conversion of Ft4 to Ft3

Once all four vitamins are optimal, if Ft3 remains low you will need small doses of T3 alongside levothyroxine

[Anic in reply to SlowDragon]

Thank you SlowDragon.

My B12 is just at bottom limit at 33

My D is low too at 15

My Iron was ok

Im working on improving these, from your previous advice to my posts.

[SlowDragon Administrator in reply to Anic]

Never ever agree to dose reduction based just on TSH and Ft4

Getting all four vitamins optimal should enable you to increase dose levothyroxine