Recently diagnosed with underactive thyroid

[Shannon0509]

Hi, recently diagnosed been on Levothroxine for approx 7 weeks but still struggling is this normal?

[PurpleNails Administrator]

Welcome to forum.

It can take some time to get dose right & for symptoms to be resolved. When levo is introduced it initially top up levels, this allows the TSH to lower so thyroid will put out a little less, by about 6-8 weeks you likely need an increase.

Did dr say you’d need to be retested & replacement increased?

What dose did you start on?

Do you have any results? You can ask for copies of lab tests or set up to view them on line at some practices. You need your results & lab range. Tracking your own levels can be really helpful in making sure you make the progress you need.

[Shannon0509 in reply to PurpleNails]

Thanks, started on 50mg. Had repeat blood test taken a week ago, all I had back so far was a txt to my cholestorol was still high but nothing re Thyroid level or folic acid and vitamin d which were also showing low. GP didn’t share what my levels were but will ask next time I am there. I also suffer brain fog but my biggest is fatigue and muscle pains that come on out of nowhere and are still lasting 24-48 hrs. Do you also have problems with dry skin and hair?

[RedApple Administrator in reply to Shannon0509]

Low folate can contribute to many of the symptoms you mention, so taking a modest dose of Methyl Folate (400ug) supplement is something you can do to help yourself. You might want to add a B12 supplement alomgside the methyl folate, as chances are your B12 is low.

[Sleepman]

It is slow, as purplenails likely you are ready for dose increase and next blood test.

Take levo away from food and coffee and other tablets.

This is mainly a cut and paste from info the other day to someone else. I am about 2 1/2 years into this and I am well.

Many on hear struggle with conversion of levo to T3 - so it is the scary 10/15 % club, most are much simpler - but the doctors treat all as simple it seems. Do not get spooked to much by reading of problems.

a)Really Good if you are having no reaction to the levo. - some do.(your not worse)

It is really slow to get active in your body weeks and weeks

c) Get antibody test done - is it autoimmune type - very likely

I think the worry and go slow stuff is your body starting to get used to but also if autoimmune attack is going on thyroid can release T3 and T4 from its stores - this can swing things around - "hashi swing".

You might not be able to tolerate gluten or dairy after all this too if AI type.

d) Ignore pre diabetes and cholesterol for a bit they will likely be showing up but will be OK once you get hormone levels ok.

e) Take it very steady and let your body start mending itself. A few months of very reduced activity. I had brain fog.

I stopped crying quite quickly, which is important for a mid 50s bloke who had not been out of whack like this before. It affects every body a bit different but it will be months for your body to repair itself once its battery pack is working properly again.

I was pretty good by about week 11 and then the slow process of getting final optimisation. I was low conversion more complicated one but pretty reasonable level.

f) track your symptoms in writing somehow, weight, pulse on waking, blood pressure. These are faster than blood tests. I measured temperature but I do not have a 28 day cycle. My feet warmed up quite quickly. Stay away from ill people, do not have vaccines for a while etc.

g) as above a private thyroid test in a few months to see if you are converting to T3 correctly. You will likely need to budget for a few of these and if you can manage the home stabbing method they are about £30.

h) when posting - if few replies repost again after a day or so - they can be missed.

[Shannon0509 in reply to Sleepman]

healthunlocked.com/thyroidu...

[Lovecake]

Hi, unfortunately it is normal. As it probably too years for you to be where you were before starting Levo, it can take a long time to feel ok again. I would say it took me 3-4 years to feel fairly ok. But after 9 years since being diagnosed things still change.

[Lilian15]

It could be that your doctor started you on a very low dose, but now need to increase it a bit more. Your doctor should have told you to make an appointment after six weeks, to have a blood test and to check how you are feeling. If you have been hypothyroid for a while it is better to increase the dose gradually. However some doctors never ever think of this. They prescribe levothyroxine and think that is it as far as the patients thyroid is concerned.

[SarahJane1471]

it would be helpful for the forum if you could get the results of your tests and post here.

As above you will probably have to private test for TSH FT4 and FT3 then you can keep an eye on what is happening.

At the start of treatment you are likely to go up and down with each increase in dose until you reach a “sweet spot “.

Some people find this very simple and straightforward ( in fact most people).

Others struggle. It’s also important to get other things optimal. B12, Vit D, ferritin and folate.

Don’t panic. It’s all scary to begin with but keep reading here and educate yourself about all things thyroid. There are some very, very knowledgeable people on this forum who have helped and guided me all the way

[SlowDragon Ambassador]

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

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Easiest option is NHS app, you may need "enhanced access" to see blood results.

If you can’t currently see test results online, simply ask receptionist at GP surgery to give you access. You will need to have photo ID with you.

This currently only applies in England, not across the whole of the UK. Nether Scotland nor N.Ireland have released an NHS app for patients. (Scotland supposedly due in December '24.) Wales has an app, but only for booking appointments, repeat prescriptions and amending personal details

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 to see if your hypothyroidism is autoimmune

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

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)

is this how you did your test

Which brand of levothyroxine is your 50mcg tablets?