How am I supposed to feel: Diagnosed in August... - Thyroid UK

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How am I supposed to feel

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Diagnosed in August last year with u/a thyroid. Put on 25mgs, two blood tests and told to come back in years time for another test. My question is after taking pill at 7am and waiting hour for food/drink am I supposed to get some benefit from the pill, because nothing happens and still feel weary and walking more than 20 mins I have to sit down for 10 mins to get my breath back. Been tested for heart and lungs and have nodule on lungs which is quite common. Any suggestions on how to get back to normal please..

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6 Replies
Buddy195 profile image
Buddy195Administrator

25mcg Levo is an extremely small dose, so I’m not surprised you haven’t felt any benefit Dorsetgirl17. Can you share your thyroid blood test results with us. Please ask your GP for a copy if you don’t have them- you are legally entitled to these. We ideally need to see TSH, FT3 and FT4 (with ranges in brackets). Have you ever tested key thyroid vitamins- ferritin, folate, B12 and Vit D?

Pray4health profile image
Pray4health in reply toBuddy195

That is interesting. I was recently diagnosed with u/a thyroid but in fact suffer from years. I did not antibody tests too and anti tg is possitive.My Ferritin, vitamin D are persistantly low for over a decade. I am taking 4000 units vit d and it is stil low. I did not realise this is related

Espeegee profile image
Espeegee

what is supposed to happen is that 6 weeks after your first dose your bloods are retested to see what, if any effect, the medication has had and the dose adjusted. You have been put on a tiny dose, generally the starting point if you are 65+. It clearly hasn't had any effect on your symptoms so a higher dose is indicated. You need to return to your GP and tell him/her you have not improved and ask for another test now, not just of your thyroid but Vit D, ferritin, B12 and others. Sounds like they have done the bare minimum which isn't good enough. Read the NICE guidelines re thyroid testing so you can argue your case and read this forum's posts, they are very helpful. I'm afraid you have to be your own advocate these days.

SlowDragon profile image
SlowDragonAdministrator

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 have been doing your test

Get hold of copies of all your recent blood test results and ranges

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. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

patients-association.org.uk...

healthunlocked.com/thyroidu...

In reality some GP surgeries still do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Far too often only TSH is tested

Request a new test now including thyroid antibodies, vitamin D, folate, ferritin and B12 if these haven’t been tested yet

Are you currently taking any vitamin supplements

If yes, what exactly

SlowDragon profile image
SlowDragonAdministrator

Levothyroxine doesn’t “top up” your failing thyroid, it replaces it

So it’s important to get dose increased as fast as tolerated

Because of your age GP was correct to start you on only 25mcg levothyroxine. But you should have had next dose increase by now up to 50mcg

Likely to need several further increases over coming months

Being left on too small a dose levothyroxine can result in vitamin levels dropping further

Breathlessness can be low iron/ferritin

request GP do full iron panel test for anaemia

greygoose profile image
greygoose

My question is after taking pill at 7am and waiting hour for food/drink am I supposed to get some benefit from the pill, because nothing happens

Nothing is supposed to happen, and no, you're not supposed to feel any benefit just from taking the pill. It doesn't work like aspirin. It's not a drug. It's the thyroid hormone T4.

T4 is basically a storage hormone that doesn't do much until it is converted into the active hormone, T3. And that takes time - weeks. Which is why you have to wait at least six weeks before retesting.

And it takes more than an hour to get into your blood, anyway. In one hour, it should have cleared your stomach - although if you have low stomach acid, it might actully take longer than that. It then goes through the gut - probably quite slowly if you're constipated like a lot of hypos are. And eventually passes the blood/gut barrier. It is then stocked (in the liver, I think but not sure) until it is converted to T3. But that doesn't happen instantly.

What's more, you have to take enough of it to eventually feel the desired effects. 25 mcg is not enough for anyone. But, with all hormones you have to start low and increase slowly. With levo that means (usually) starting on 50 mcg and increasing by 25 mcg every six weeks until your symptoms are gone and you feel well. But it all takes time. :)

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