Just started 100mg levothyroxine how long until symptoms improve?

[Dils9]

I was diagnosed with Graves’ disease 4 years ago and had radioactive iodine treatment last October. Since then my bloods last week confirmed I’ve gone severely underactive which explains why I’ve felt so terrible recently. Really suffering with constipation, issues sleeping, anxiety, depression, muscle aches and pains. I’ve just started levothyroxine and wondered how long it takes for symptoms to subside and if anyone has any recommendations to help ease symptoms or how they coped as I’m really struggling and fed up.

[PurpleNails Administrator]

Hello & welcome to the forum

Do you have any of your blood test results? post on here with ranges.

TSH

FT4

FT3

Were your thyroid antibodies checked at diagnosis? NHS do not always do this and rarely repeat.

After being hyper & having RAI, nutrients are often very depleted. If nutrients are not optimal thyroid hormone will not work properly.

Vit D

B12

Folate

Ferritin

If GP will not test, there are private testing companies recommended on here.

You will need a retest after 6 weeks to recheck your thyroid levels. Dose is increased slowly upwards in 25mcg steps.

Having TSH around 1, FT4 & FT3 in top part of range and optimal nutrients is your aim. Doctors often believe as long are you are somewhere in range that will acceptable.

Do you take your levo on a empty stomach? Well away from food, other medication & supplements.

When you have thyroid blood tests it’s advisable to book a morning blood draw, fast 12 hours (water only) and delay taking delayed dose after blood draw. Will show highest TSH, lowest FT4.

If you don’t already you might find it helpful to start keeping a diary of your symptoms, medications and any supplements you take. Get into habit of obtaining test results and learning how to understand them.

Online access to GP records ideal, if your practice offers if. Otherwise obtain printed copy via GP reception.

[Dils9 in reply to PurpleNails]

Thank you for your reply and advice. My TSH is 149 and FT4 is 2.9 these results are adding to my anxieties as I know they are really bad and I suffer from health anxiety as it is, I’m worried something serious is going to happen to me ie before the levothyroxine actually starts to work. All the information on the internet is terrifying.

I take it on an empty stomach and the gp has run additional blood tests but I haven’t had the results back.

[shaws Administrator in reply to Dils9]

Welcome to our forum Dils9 and try not to worry too much at present as small increases in dose every six weeks after a blood test you should soon reach an 'optimum' dose. 'Optimum' means that you feel well and have no clinical symptoms.

My TSH was 100 when diagnosed so am well aware of how you must be feeling at present but gradually you should feel better. Take levothyroxine on an empty stomach (usually when we get up in morning) with one full glass of water and wait an hour before eating. Some people prefer a bedtime dose: in that case miss this dose if having a blood test next a.m. and take it afterwards and night dose as usual the same day.

PurpleNails has given good advice.

Levothyroxine is the standard replacement. It is also called T4 and is an inactive hormone and should convert to liothyronine (T3). T3 is the active thyroid hormone needed in our thousands of T3 receptor cells for our body to function normally. The brain and heart have the most T3 receptor cells.

Thousands seem to recover their health with levo but those who do not may have to try options which is a T3/T4 combination or T3 alone.

If you're in the UK the cost of T3 has become exhorbitant so it was withdrawn, altogether leaving many people anxious. An Endocrinologist can now prescribe it but some still wont do so.

Always get blood drawn at the earliest possible and get a print-out for your own records.

I hope you feel better soon.

[Jazzw]

Hi Dils9, welcome. You’ll find lots of support here.

It sounds like your RAI was a little too effective but the good news is that you have a doctor who was willing to start you off on 100mcg Levo. You may need more but it’ll take 6-8 weeks for it to become fully effective in your body as levothyroxine has a week-long half life and takes time to build up. You should start to feel a bit better within a couple of weeks.

Make sure you go for another blood test at that 6-8 week point. It’s good to know what your blood test results are so when you go back ask for them and start keeping a record (if you aren’t doing so already).

In the meantime, it’s just going to be a question of pacing yourself. It’ll take you longer to recover from even light exercise so this is not the time to start a fitness campaign.

[ilenuca]

Do you know what dose of iodine you received?

[Buddy195 Administrator]

I’m not surprised you feel awful with those results. You will feel so much better when your TSH falls and T3/ T4 rise. I only began to feel better when both thyroid level & key vitamins were optimal, so do test ferritin, folate & Vit D. Many of us do this privately- I use Medichecks (often discounted on Thursdays).

[pennyannie]

Hello Dils and welcome to the forum :

I too have Graves and was treated with RAI back in 2005 and I was put on 100 mcg Levothyroxine immediately.

As I understand things RAI is a slow burn and gradually your thyroid will be rendered disabled and non functioning, usually within months. Levothyroxine - T4 - thyroid hormone replacement is then prescribe to pick up the slack and regular blood tests need to be run until such time as your body stabilizes with a dose of T4 that relieves any symptoms of hypothyroidism and sees your TSH, T3 and T4 in range.

T4 is a storage hormone and needs to be converted by your body into T3 which is the active hormone that the body runs on. I read T3 is about 4 times more powerful than T4 with the average person utilising around 50 mcg T3 daily, just to function.

It is essential that you maintain your core strength strong and solid for good health and for optimal conversion of the T4 into T3 and especially ferritin, folate, B12 and vitamin D and need to be maintained at optimal, rather than just " somewhere " in the NHS ranges.

I'm presuming you are still under the hospital and have some blood test results showing both T3 and T4 blood test results, and generally speaking most people feel at their best when both these vital hormones are in the upper quadrants of the ranges.

If you are back in primary care your doctor needs to dose and monitor on T3 and T4 blood tests and not just a TSH blood test result which seems common practise.

The thyroid is a major gland responsible for full body synchronisation including your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.

A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin, plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100mcg :

Some people can get by on T4 only, some people at some point in time find their ability to convert T4 into T3 challenging and some people simply need both T3 and T4 dosed independently.

There is nothing on your profile page but just to add, if you haven't heard of the Elaine Moore Graves Disease Foundation website you might like to dip in, and please check out Thyroid uk who are the charity who support this amazing forum and has much more information as to how things stand in the uk and who tireless campaign for better thyroid knowledge and treatment for everyone.

[PurpleNails Administrator in reply to pennyannie]

Link to Elaine Moore suggested by pennyannie

elaine-moore.com

[pennyannie in reply to PurpleNails]

Good morning to you too - pencils sharpened ????

[Dils9]

Hi everyone just wanted to say thank you all so much for your responses it’s great to know there’s a wealth of info and community of support out there. Spoke to my gp again this morn and had to get my blood pressure and heart rate checked, all normal so no concerns from their side and they just said I need to persevere with the medication. As my weights gone up they’ve increased my dosage to 125 now and my vit d levels are also low so he’s given me a high dose of vitamin d to take once a week too. Also feeling less panicked as I’ve also taken some days off work to recover too as that was also adding to my anxieties.

[helvella Administrator Thyroid UK]

Please start a new post - down here, on a thread about some other aspects of thyroid, your question is likely to be missed completely, or at most only get a short answer.