symptoms when increasing levo dose

[SovietSong]

Morning everyone,as advised on here I recently upped my Levo dose from 135(3 days 150,4 days 125) to 150 daily.I have been on this new dose two weeks today and have been getting headaches,cold hands and chills etc.I know it can take a new dose time to settle in but didn’t think such a small increase would have this effect.Is this common in the first few weeks when increasing meds?Thanks in advance.

[HealthStarDust]

Hi Soviet.

I am sorry you are suffering.

I keep returning to these sort of questions in mind regarding levothyroxine. What I can share is that recently on my small increase of 12.5mcg from 75mcg daily to 75mcg and 100mcg alternate days for an average dose of 87.5mcg some of the change in symptoms I have had are as follows:

Week 1 and 2: some warmth felt on skin only for these weeks.

Week 3 and 4: nausea, ear pain and mouth pain, eventually diagnosed with ear infection. Also very strange sensations on the top of my skull and behind nose.

Week 5 and 6: a couple of days of a little energy, then back to the usual fatigue and leg pain as wells other joint pains more prominent.

I’m currently trying to decide if I should stick to my current dose a bit longer, switch brand, or increase dose all before deciding if I should have another full thyroid panel test privately. I can’t say I have always found the numbers very useful in making a decision.

Not easy is it?

Hope you work this out.

[SovietSong in reply to HealthStarDust]

Thanks for reply,ear pain is one of my symptoms too,I had it constantly when badly under medicated on 100mcg daily.

[SovietSong in reply to HealthStarDust]

I read on here yesterday it’s a marathon not a sprint.how true it is.

[HealthStarDust in reply to SovietSong]

Not according to one of my GPs who said most people become well a lot sooner than me!

[pennyannie]

Hey there -

I'm sure I've written to you before - but can't remember - see you are with Graves Disease - did you have definitive treatment RAI /thyroidectomy ?

[SovietSong in reply to pennyannie]

Thank you for the reply pennyannie,yes that’s correct I had RAI good few years back now.

[pennyannie in reply to SovietSong]

RAI is known to trigger fibromyalgia and Sjogren's Syndrome is some Graves patients :

I think you will struggle finding wellness of T4 monotherapy and would be better with a T3 / T4 combo or taking taking Natural Desiccated Thyroid.

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 100 mcg.

T4 is a storage hormone and needs to be converted by your body, in the liver, into T3 the active hormone - ( said to be around 4 times more powerful than T4 ) - which runs all your bodily functios from your physicality through to your mental, emotional, psychological and spiritual well being, your inner central heting system and your metabolism.

You have lost your own natural production of both T3 and T4 and likely need a little T3 - Liothyronine - to kick start your conversion of T4 and likely why your body is struggling on just T4 monotherapy to give you back your full health and well being.

elaine-moore.com for all things Graves Disease.

[SovietSong in reply to pennyannie]

I was on 150mcg for about 5 years but then my GP reduced dose to 100mcg in one swoop.After a year on 100mcg I was really badly hypo,loads of symptoms.Ive been slowly increasing 112.5mcg,125mcg then 135.lots of the symptoms have disappeared and I was well for weeks at a time on 135 but slowly few symptoms began to reappear.I know that because I had RAI I would prob need higher dose?

[pennyannie in reply to SovietSong]

It's not so much a higher dose - and of what T4 ?

but the right balance between the T3 and T4 thyroid hormones that gives you back your wellness - T3 and T4 work together - and bounce off each other - too much T4 without enough T3 - is not going to work.

Imagine a seesaw - T4 one end with T3 the other end -

we know T3 is around 4 times more powerful than T4 -

so to get both ends responding to each other and giving each other ' the bumps ' and enjoying the seesaw - we need the weight evenly balanced.

T4 is inert, a prohormone, and doesn't do much in itself - and the body needs to be able to convert T4 into T3 when and if needed - with the heart and brain taking the lions share of the T3 to keep you alive and with some cognitive functions.

It is too low a level of T3 for you that causes all the symptoms of hypothyroidism.

Does that make sense ?

[SovietSong in reply to pennyannie]

Yes thanks so much for all that information pennyannie,much appreciated.

[pennyannie in reply to SovietSong]

Had I written to you fully previously - as it's difficult to go too far back through my older replies to people - ?

[SovietSong in reply to pennyannie]

Yes I’m fairly sure you did pennyannie.If I could just ask something else,why after so many years would I not be converting properly?

[pennyannie in reply to SovietSong]

RAI is a slow burn - there is no time line on when or where but ultimately your thyroid will be fully burnt out in situ and totally disabled and producing no T3 or T4 with which to support you.

Without a thyroid we need to be extra vigilant and keep our core strength vitamins and minerals at optimal levels as these are needed to help T4 conversion even when you have a thyroid.

T4 to T3 conversion can be compromised by non optimal levels of ferritin, folate, B12 and vitamin D and harder to ' fix ' down regulation of T4 to T3 can be because of inflammation, antibodies, any physiological stress ( emotional or physical ) depression, dieting and ageing.

RAI is also known to trash vitamins and minerals - and again - no time line on this - I need to keep supplementing to maintain my core strength vitamins and vitamins and I eat clean and cook from scratch.

We also tend to have low stomach acid so struggle to be able to digest and breakdown key nutrients in our food - irrespective how healthy our diet is.

We do now have some research stating that RAI offers the worst Quality of Life 6-10 years on from ingesting - ncbi.nlm.nih.gov/pubmed/306...

and I can't see it get any better as this toxic substance sits in the body.

We do now know that there is an increased risk of cancer of the small bowel and breast tissue with 25 year time line given for this bombshell - but who knows - and that this toxic waste is also taken up by the adrenals, gonads, and salivary glands.

Were your eyes affected after RAI ?

[SovietSong in reply to pennyannie]

No my eyes were fine pennyannie.Many thanks for taking the time to send all that information,greatly appreciated.I think I will have to go down the t3 route.My GP is not very clued up on all things thyroid and even getting a slight increase in Levo can be a struggle.

[pennyannie in reply to SovietSong]

Glad to read you eyes are ok :

I think that's power for the course and why so many people are on forums looking for answers as they feel lost and alone facing a doctor looking at a computer screen.

Thank goodness for Thyroid UK - www,thyroiduk.org - and all this charity does to help support and fight our corner with the medical profession.

[Tythrop in reply to SovietSong]

If you go through NHS maybe they won't yest for t3 ....have you tried testing yourself via,say, medicheck or similar private testing organisation .?

[SovietSong in reply to Tythrop]

Thanks Tythrop,yes I test using Monitor My Health.Latest test I did while on 135 Levo showed t3 at roughly 80% but t3 had dropped to 54% through range.

[Tythrop in reply to SovietSong]

Oh , ..you haven't had a virus or something like that ?

[pennyannie in reply to SovietSong]

I think you should amend your bio to read Graves post RAI and give a date as it does have a bearing on the advice being offered by forum members.