Newly diagnosed - getting dose right: Hello... - Thyroid UK

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Newly diagnosed - getting dose right

eachpeach profile image
9 Replies

Hello everyone, I'm newly diagnosed with autoimmune hypothyroidism and am trying to understand more about the condition.

I've been taking 25mg Levothyroxine for a month. I was told to increase the dose to 50mg after week but got shakes, palpitations and agitation so was told to reduce back to 25mg.

My consultant has told me to try and increase to 50mg as I need to be on 75mg they think, but am worried about these scary side effects. Not had blood test results yet but my pulse was normal at the hospital.

Interested to hear if this happened to you? And if so what you did to get to the right dose? Thanks so much!

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9 Replies
Portia1974 profile image
Portia1974

I've just started on Levo too. My starting dose was 50mcg. I'm now a week in. Doses are meant to, as I understand it, be increased slowly, by 25mcg every 6-8 weeks following blood tests for tsh, ft4 and ft3. The aim is to find the dose that gets tsh to 1 or lower and ft4 and ft3 mid to upper range. Ft3 is the key one.

25mcg is a low starter dose from what I've read. Unless you have heart condition or are of more senior age. It's enough apparently to dial back your own hormone production, but not enough to replace. So could leave you feeling worse than before.

A week is not long enough between dose changes as it takes 6-8 weeks for your body to adjust. Softly Softly is the approach that's recommended.

The other thing that might explain it making you feel bad is the brand of Levo.

I changed my brand after only 2 days as I felt AWFUL. Short of breath, panicky and more exhausted than ever. I discovered that the brand I was given by the pharmacist (TEVA) is not well tolerated by many as it contains mannitol (e421). Switched to Mercury Pharma for last few days and side effects have gone.

Something to look into maybe. I'm sure more knowledgeable members will be able to advise you further especially with regards to the hyper/hypo effects of hashimotos (autoimmune thyroiditis) which may also be at play.

eachpeach profile image
eachpeach in reply to Portia1974

Thanks so much! Very interesting to hear that the brand can play a big role on how you feel. The consultant mentioned that too. It's such a learning curve isn't it? I hadn't heard of the hyper/hypo effects so will do some more research (neither consultant nor GP mentioned it either). Hope you continue to feel better.

SeasideSusie profile image
SeasideSusieRemembering

eachpeach

You may be one of those people who are sensitive to Levo and need to increase your dose gradually.

Maybe try adding 12.5mcg rather than an extra 25mcg and see how that goes.

Also, with autoimmune thyroid disease - aka Hashimoto's - the antibodies fluctuate and it's just possible that at the time of trying to increase your hormone levels were high and increasing dose at that time wasn't the right thing to do.

Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.

For information about Hashi's, here are some links so you can understand it

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

thyroiduk.org.uk/tuk/about_...

You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.

Gluten/thyroid connection: chriskresser.com/the-gluten...

Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies. I would ask for the following to be tested

Vit D

B12

Folate

Ferritin

eachpeach profile image
eachpeach in reply to SeasideSusie

Thank you so much for all that information - very much appreciated. I have other autoimmune diseases too and these also lead to vitamin deficiencies which are hard to get on top of. Consultant did offer to do some vitamin tests as my blood corpuscles are too small so may have some kind of anaemia (although Haemoglobin is usually OK)> Thanks for the selenium tip - will try and get some of that too. Gluten free diet tip also interesting (if sigh inducing as I love carbs!). Are you on top of your levels at the moment?

SeasideSusie profile image
SeasideSusieRemembering in reply to eachpeach

I've just had to alter my doses of Levo and T3 after having stable results for some time, which is disappointing. But I have other issues going on at the moment and maybe it's something to do with that.

eachpeach profile image
eachpeach in reply to SeasideSusie

That's a shame. Have read about T3 - my endocrinologist said she doesn't prescribe it. How did you get access to it?

SeasideSusie profile image
SeasideSusieRemembering in reply to eachpeach

Self sourced.

eachpeach profile image
eachpeach in reply to SeasideSusie

Aha, I see. Did you see a Dr to discuss how much T3 to take and to be monitored etc? (I've just ordered the selenium - thanks!)

SeasideSusie profile image
SeasideSusieRemembering in reply to eachpeach

No doctor. They're ony interested in TSH. I've had to sort out my own problems and I do private tests.

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