Newly on levothyroxine. How long until I start ... - Thyroid UK

Thyroid UK

111,520 members129,697 posts

Newly on levothyroxine. How long until I start to feel better?

kittytiger
kittytiger

Hi lovely knowledgeable people.

I JUST got diagnosed with hypothyroidism after experiencing some health difficulties and odd symptoms that seemed unrelated, for the past year. I have a 2 year old, and the doc says that it could be lingering from my pregnancy, as my last thyroid function test was 2 years before I conceived. It was never checked during or after pregnancy.

My TSH level is 4.46 My doc says normal range is .4 to 4.20 I've been put on 12mg of levothyroxine. Any advice on how long I should expect to take it before I start feeling better? My primary symptoms are lethargy, transient joint pain, hair and nails deteriorating, lack of libido, motivation.

Any advice about foods? I keep getting conflicting info from my web searches, avoid goitrogens, avoid caffeine, eat healthy, eat lower carb, take selenium etc.

I'm just a little overwhelmed and lost with the diagnosis and all the conflicting dos and don'ts.

Thank you in advance. <3

10 Replies
oldestnewest
SlowDragon
SlowDragonAdministrator

Do you have any other blood test results from before starting on Levothyroxine

You are legally entitled to printed copies of your blood test results and ranges

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Majority of primary hypothyroidism is due to autoimmune thyroid disease also called Hashimoto's diagnosed by high thyroid antibodies

Bloods should be retested 6-8 weeks after each dose increase

12.5mcg is a tiny dose, it may make you feel worse. Standard starter dose is 50mcgs

It takes a full 6 weeks for each dose to have full effect

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

At next test request vitamins and antibodies tested if not been done yet

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

Thank you for your reply!

I just had the TSH and Free T4 tested. I'll be sure to request a full thyroid panel. The blood tests were kind of all encompassing, and the doc threw in a thyroid test to rule it out, but it's the only thing that's flagged.

Free T4 is: 1.5 ng/dL Standard is: 0.8 - 1.7 ng/dL

My B12 level is 329 pg/mL Standard needs to be >=200 pg/mL

None of the other things that you mentioned were tested. My potassium, and magnesium levels are all within the normal ranges.

Should I request to see an endocrinologist, or start with the more specialized bloodwork. Ive also been reading up about avoiding gluten, as that seems to coincide with many thyroid issues.

Thank you!

SlowDragon
SlowDragonAdministrator in reply to kittytiger

If you have been started on just 12mcg per day, most likely the brand is Teva as they are only brand to make such a tiny dose. (Unless taking different brand 25mcg and taking alternate days, or cutting in half)

Teva brand can upset many people. Teva is the only brand that is lactose free, instead it contains mannitol, as a filler, this can upset some people

Posts about Teva

healthunlocked.com/search/p...

It's a Marmite brand in that some people love it, usually if they are lactose intolerant. Many people can't tolerate it

List of different brands available.

thyroiduk.org.uk/tuk/treatm...

It's trial and error what brand suits individual people

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription

B12, result under 500 can cause symptoms

Make sure to get folate, B12, vitamin D and ferritin tested at next blood test

Morning Kitty, love your name !

I remember feeling very bad before I was diagnosed and my nails were split to pieces. Even starting in a low dose of Levo ( which you have to do ) I started to feel gradually better in a couple of weeks, or possibly "less bad". For me it was very gradual, and one day I thought gosh I don't feel like I'm walking through treacle today, haven't felt like this for ages. It should lift but as anyone on here will say just keep in touch with your doctor. As for food, well , today there seems to be " no right" about diet. I wouldn't add this to your worries ... just eat healthily with a wide range of veggies. I'm sure other people on here will advise too. Hope you start to feel better.

I logged in today to see if anyone else is struggling with the heat ! I feel like the only one who sees the forecast for blazing sunshine and says..oh no.....😂. Take care. Sue

shaws
shawsAdministrator

Welcome to our forum kittytiger

Some women do become hypothyroid after pregnancy or you may have started to before becoming pregnant.

Are you taking 12mg or 120mcg because usually levothyroxine is usually measured in mcg?

We start on 50mcg of levothyroxine and every six weeks after a blood test, it is increased by 25mcg until our TSH is 1 or lower. Not - as many doctors seem to believe - to get the TSH 'somewhere' within the range.

Blood tests have always to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between last dose and test and take afterwards.

This helps the TSH to be at its highest as that seems to be all doctors notice and, as stated above, when 'within range' they may not increase despite our continuing symptoms.

We have to read and learn and educate ourselves as the majority on this forum have had to do this in order to feel better and relieve symptoms.

Some hints/advice:-

A full thyroid blood test is:-

TSH, T4, T3, Free T4 Free T3 and antibodies. If antibodies are present in blood you'd have an Autoimmune Thyroid Disease commonly called Hashimoto's (hashi's). Ask GP to check B12, Vit D, iron, ferritin and folate. Deficiencies can also cause symptoms.

Levothyroxine should be taken on an empty stomach with one full glass of water and wait an hour before eating. Most do this early a.m. but some prefer a bedtime dose (in this case you miss night dose if having a blood test next a.m. you miss this dose and take after test and night dose as usual.

Always ask for a print-out of your results and make sure the ranges (these are in brackets after the results) are stated. Labs differ in their machines and so do the ranges and it enables members to respond.

Ask also for B12, Vit D, iron, ferritin and folate as we can be deficient and everything has to be optimal.

Thyroiduk is the 'website' for information too.

thyroiduk.org.uk/

You can also become a member because the more members we have the stronger we are in getting changes made where we think it is appropriate, as doctors seem not to know how best to treat except to look at the TSH result.

I will also state I'm not medically qualified but had to diagnose myself - by that time TSH was 100.

kittytiger
kittytiger in reply to shaws

Hi Shaws,

Thank you for pointing out my error. Its 12mcg. My doc said that since my levels are only slightly above normal, we'll start slow and test my blood again in 6-8 weeks. I'll be sure to ask for further testing to get a fuller picture of my thyroid function. Thank you for your help and insight. Much appreciated.

- Kitty

shaws
shawsAdministrator in reply to kittytiger

That's ridiculous, the starting dose is 25mcg unless you're very frail with a heart disease with a blood test every six weeks, following the above advice, 50mcg is a starting dose.

shaws
shawsAdministrator in reply to kittytiger

Hmmmmmmmmm, Slightly above normal. That doesn't mean you get such a small dose which can backfire but I hope not.

I'm afraid this doctor knows nothing about thyroid. The fact that you are only just above the top of the range doesn't mean you should start on such a rediculously low dose. The starting dose for everybody should be 50 mcg.

Your doctor obviously doesn't know that the top of the range may be 4.2 but you're actually hypo with a TSH of 3. However, let's not look a gift horse in the mouth, at least he's started you on levo. A lot of doctors wouldn't at that level. The problem is the size of the dose he's started you on which, as SlowDragon says, may make you worse before it makes your better.

About food… the things you need to avoid are: all forms of soy - soy flour, soy protein, soy oil, etc. Processed seed oils, like rapeseed oil. And artificial sweeteners.

Ignore all you read about goitrogens. It's not practical nor healthy to exclude so many things from your diet. And, you'd have to eat one hell of a lot of them for them to have any effect - like cabbage soup three times a day, every day! A varied diet is the best.

Gluten-free is usually advised for people with Hashi's. As you haven't had your antibodies tested, you don't know if you have Hashi's. That is something you need to ask for.

Apart from that, just eat what you like and what likes you. If something upsets you - like dairy upsets some people - don't eat it. There is no food you can eat that is going to restore the function of your thyroid. And the only thing that is going to make it worse is soy. So, just eat clean, fresh food and enjoy. :)

Kitty, Your blood test results aren't bad, fT4 1.5 (0.8 - 1.7) but sometimes patients are hypothyroid with normal blood tests. Your signs and symptoms are suggestive of hypothyroidism. I assume you doctor has checked your iron levels and ruled out diabetes.

Your fT4 is good but TSH a touch high, measuring fT3 might explain this.

It would really help if the doctor measure TSH, fT3 and fT4 to get a fuller picture. To confirm your problem is hypothyroidism it would be better if you were put on 50 mcg (still a small dose) and then you could see if it makes a difference. I don't think anyone could notice the effects of 12 mcg, very few countries have 12 mcg tablets and they are usually used to fine tune much higher doses. (A typical dose is 100 - 150 mcg levothyroxine although some patients require more).

I would just eat normal foods, there's a lot of hype about various foods and hypo which is not backed by evidence. Gluten free helps a small percentage of patients, I would only try it once you have confirmed you have a thyroid problem (your response to thyroid hormone) and have been on a good dose for some time without success. Take levothyroxine away from coffee and meals, you can take it at bedtime if that is easier. In the meantime you need a decent dose of levothyroxine to judge whether it makes a difference.

You may also like...