please help

[Nicola39]

I’m Nicola I’m 45 had been going back an for to doctors for years with symptoms aches an pains finally march i was diagnosed with low thyroid started me off on 50 I’m currently up to 150 and all this time I have no energy I feel worse now on medication I’ve just started feeling slightly better but feel I will never have my life back I struggle to eat most days but have put a lot of weight on and don’t eat no more than wot I usually do I no I need to make more of an effort with food but for years have had bad relationships with food plz sm1 tell me it gets better

[greygoose]

Hi Nicola39, welcome to the forum.

First things first: do you always get copies of your blood test results? If so, start by posting your latest results on here, with the ranges, and let's have a look. You may be taking 150 mcg but the questions are: a) how much are you absorbing and b) how much is your body using?

It often happens that people feel worse when they forst start levo. New symptoms appear, or old ones intensify. It's a bit complicated to explain right now, but that's how it often works. But, usually, by the time people get to 150 mcg, they are feeling better. If they aren't, we have to try and work out why. So, I hope you'll excuse all the questions.

Can you tell me how you take your levo? Do you take it on an empty stomach? Often people take it when they first get up, before breakfast, and then wait an hour before eating or drinking anything other than water.

Do you take any other supplements/medication? If so, how long is the gap between taking your levo and the other pills?

Do you take it regularly every day?

And, how do you do your blood tests?

Do you always have the blood draw at the same time of day? What time?

Do you fast before the test or eat normally?

Do you leave a 24 hour gap between your last dose of levo and the blood draw?

It's important how we do the tests because it can give false information and lead to doctors increasing or decreasing the dose inappropriately.

So, if all things are equal in that department, the next thing to look at is nutrition. For the hormone you're giving your body to work correctly and help you feel better, all your nutrients need to be optimal. But, being hypo often means we have low stomach acid, so have difficulty digesting food and absorbing nutrients.

Plus, you say you have problems eating enough, which is bad on two counts: a) you won't be getting enough nutrients from your diet anyway, and b) you won't be getting enough calories.

Now, I know you want to lose weight, and therefore probably trying not to consume a lot of calories, but honestly, they are not the enemy they're made out to be! We need calories for every activity within our bodies, as well as for things like walking, working and exercising. We need them to keep our heart and lungs working, digesting our food, using hormones and even for thinking. And, if we don't get enough calories we can make ourselves even more hypo, and therefore put on even more weight. Weight gain and lack of appetite are both hypo symptoms.

So, have you had your nutrients tested: vit D, vit B12, folate and ferritin? Those are the principal nutrients and should be tested because if they are low, they can cause a lot of symptoms and make you feel even worse.

I know you just wanted a simply answer about getting better to encourage you, but it isn't a simple subject. And, to feel better, we have to get all our ducks in a row, as they say. These are just the first steps to doing that. So, let's get cracking on making you better. xxx

[SlowDragon Administrator]

welcome to the forum

Are you based in U.K. or elsewhere?

Approx age?

Please add most recent results and ranges

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

Have you had vitamin levels tested

What vitamin supplements are you taking

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

[DippyDame]

Welcome   Nicola39

That sounds very familiar!

Bottom line....I'd suggest your cellular T3 is too low.

Not an easy issue to resolve quickly I'm afraid.....or one that medics are clued up about.

But.....there is an answer so stay positive

You are piling in the levo but it's not solving the problem ..... 150 then 175mcg levo didn't help me either.

So, as greygoose alluded to, you are either not absorbing the hormone or the hormone ( as T3) is not reaching the nuclei of the cells where it attaches to the T3 receptors and can then fulfill it's function

Metabolism relies on T3 so if that is low metabolism runs low and weight gain and other problems occur

You say you feel slightly better on 150mcg this is possibly because by T4 to T3 conversion your FT3 level has slightly improved....though not enough to resolve your symptoms.

T4 is the storage hormone and needs to be converted in various tissues in the body to the active thyroid hormone T3

For good health almost every cell in the body needs to be flooded with T3 by way of a constant and adequate supply.

Low cellular T3 = poor health

Thyroid function must be supported by optimal levels of vit D, vit B12, folate and ferritin

So....what to do!

First you need a full thyroid test....see/follow SlowDragon's advice.

Optimise essential nutrients ...if deficient.

Post the results of those tests and we will then be better able to see what is going on

I suspect your T4 to T3 conversion is poor with resultant low FT3 level, and that your nutrient levels are deficient

Unfortunately medics are not well informed re thyroid disease and most rely on TSH to monitor the dose....this is entirely wrong.

TSH is a pituitary, not a thyroid hormone. It reflects the over all level of thyroid hormone in the blood ( T4and T3) but it does not indicate the level of each hormone... which is where the problem starts for many patients!

thyroidpatients.ca/2021/07/...

If treated step by logical step the process, although slow, is straightforward

I'm afraid there is no quick fix, but there is a fix so you will need to be patient and follow the steps suggested in replies here

Many of us test privately in order to obtain full labs

thyroiduk.org/help-and-supp...

Meantime, to get started, you are legally entitled to request lab results from your surgery....post, on here, any that are available.

You will soon learn more about your condition and this should help

thyroiduk.org/if-you-are-hy...

We are all here to support you on this journey....

the support of knowledgeable and experienced members here (gg and SD amongst them) almost certainly saved my life after I arrived a number of years ago barely able to function....and I'm now aged 78!!

There is light at the end of the tunnel!

With the correct diagnoses and treatment it will get better

Hang on in there!