low starting dose: I was hoping to once again ask... - Thyroid UK

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low starting dose

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I was hoping to once again ask the advice of the boards!

I started on 25 mg of levo on June 25th, so 20 days ago. I know it's very early days but I noticed a real improvement in my symptoms over the last 10 days.

Yesterday I absolutely crashed out, I was asleep on the sofa by 5pm, husband woke me to see if I wanted dinner (I didn't!), we put the children to bed and went to bed properly around 8:30.

I'm so tearful about it today because having felt better over the last week or so I've realised how debilitating the lethargy had become.

I'm aware that 25mg is too low a starting dose, NHS say 50mg, but what do I do from here? Just suffer it for the next 5/6 weeks until my next blood test? That feels an awfully long wait though.

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17 Replies
jimh111 profile image
jimh111

Recovery can go up and down but hopefully upwards, a bit like a stock market graph.

I would ask your doctor if you can switch to 50 mcg now so that you can be assessed on this dose in 5/6 weeks time. Let them know you were better but are finding the symptoms returning.

in reply tojimh111

Thank you for your reply.

I hope to start to feel better again soon then. It has just been so disappointing to feel so rubbish again.

I will speak to the GP and see what she says. 🤞🏼

jimh111 profile image
jimh111 in reply to

If you look at nice.org.uk/guidance/ng145/... you can see

1.3.6 Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

So if she is reluctant to increase you could quote this new guidance if it is applicable.

in reply tojimh111

I should be on 100mg according to that!

Thank you. Very much appreciated.

greygoose profile image
greygoose

Don't be too disappointed, this is what happens. You start levo - or get an increase - and you feel well for a while, but the body quickly realises that what you're taking isn't enough, so the symptoms start creeping back in again. It just means you need an increase in dose, that's all. :)

in reply togreygoose

Thank you. I guess I was just disappointed because I hadn't realised how unwell I'd been feeling until I started levo and I hadn't realised how well I had started to feel until I felt unwell again.

And what a relief it was to finally start feeling well again! (Especially after years of being told I was just lazy and anxious.🤦🏻‍♀️)

greygoose profile image
greygoose in reply to

Oh, tell me about it! But, don't worry, those feelings of wellness will come back again. :)

in reply togreygoose

Thank you. I very much needed the reassurance tonight.

greygoose profile image
greygoose in reply to

You're welcome. :)

5095julieh profile image
5095julieh

I'm at exact stage as yourself with this, just today had my dose increased from 25mg to 50. I've had it with my Dr I'm now putting 100 % into the Root cause Protocol, they regulate minerals, copper, iron etc to where they belong, people are healing from all sorts of conditions, read about the founder Morley Robbins on his You tube talks also on Fb rcp123.org

SlowDragon profile image
SlowDragonAdministrator

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Your TSH was pretty high and very high thyroid antibodies

Have you started taking iron supplements now

Ask/insist on getting incread in levo to Standard starter dose and bloods tested 6-8 weeks after each dose increase

in reply toSlowDragon

Haven't started the iron supplements because I'm due a full iron panel and blood count in 5 weeks so I didn't want to skew the results.

SlowDragon profile image
SlowDragonAdministrator in reply to

Looking at previous posts GP prescribed iron supplements

If iron test is organised by GP they will expect you to have started supplements

in reply toSlowDragon

She didn't prescribe them, just recommended. She only didn't prescribe them because it was an OTC supplement and would be cheaper for me to buy.

I didn't buy them as I didn't want to skew results. I'm very happy to buy some though if I ought to be taking them now.

If I convince the GP to up my dose I should presumably cancel my blood test in 5 weeks? And rebook for a further 6 weeks later?

SlowDragon profile image
SlowDragonAdministrator in reply to

Yes definitely

Your ferritin is extremely low

You may benefit from starting ferrous fumerate

SlowDragon profile image
SlowDragonAdministrator

humanbean or SeasideSusie are our iron experts ...

They may pop along

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