Anxiety and Levo: In the process of titrating... - Thyroid UK

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Anxiety and Levo

Ginny52 profile image
13 Replies

In the process of titrating down Levothyroxine because of side effects. Does anyone have experience of anxiety/panic attack at low doses? I know I’m very much prone to this sort of thing and it doesn’t take much to wobble me but this is bad even by my low standards. Reduced slowly from 100mcg to 50.

Much love, Ginny

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Ginny52 profile image
Ginny52
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SlowDragon profile image
SlowDragonAdministrator

Under medication and returning hypothyroidism can cause bad anxiety

What was your most recent blood test results and ranges for TSH, FT4 and FT3 plus do you have Hashimoto's

Vitamin D, folate, ferritin and B12 results helpful too

Dropping dose by such a vast amount is very likely to make you feel unwell. Dose reduction needs to be done slowly, but 100mcg is not a high dose

Why do you think you were over medicated?

Ginny52 profile image
Ginny52 in reply toSlowDragon

Whoops, sorry- vanished my post while trying to correct.

My last visit to the hospital endo was 10 days ago and went very badly. I’d asked for a second opinion because they insist I have subclinical hyper and I think, I’m pretty sure actually, that I have pituitary damage from a haemorrhage in 1993. He actually just agreed with the first opinion and wouldn’t do ANY tests, Sheehan’s or otherwise, so no recent bloods.

Will have to have it done privately, when I can save enough money.

Worsening (very bad) back pain had become constant in the 4 months I was titrating up Levo, although otherwise doing well. Can’t walk or stand for long so I need to try something else. Considering NDT.

Thank you, slowdragon!

SlowDragon profile image
SlowDragonAdministrator in reply toGinny52

What are you most recent blood test results on 100mcg dose

Get all vitamins as listed above tested, but especially vitamin D for back pain

£29

vitamindtest.org.uk

Sharp pain in kidney area may be adrenal, can be due to Poor conversion or possibly DIO2 gene

thyroiduk.org.uk/tuk/testin...

Full vitamin and thyroid testing is next step

Dropping to 50mcg is very likely too much

Ginny52 profile image
Ginny52 in reply toSlowDragon

I agree. This morning I took 75 mcg, and I think I should settle about here. I know that I can make thyroxine at about the bottom of their reference range, so my idea now is to let it settle at that until levels are stable enough to test, and then do another private test.

This mess with nhs endos makes it tricky with my nice gp. I felt angry that they wouldn’t offer any testing at all, because they disagree with me.

I’ve been out in the sun as much as I can, and gp is giving me d supplement.

I do think some of the pain is from kidney/adrenals. Is there anything I could do to address that?

SlowDragon profile image
SlowDragonAdministrator in reply toGinny52

How low was vitamin D and what dose of vitamin D supplement has GP prescribed? It's often too little

Bath or shower within 48 hours of being in sunshine may apparently wash vitamin D off skin, so don't assume Sun is keeping levels high

vitamindcouncil.org/washing...

What are your B12, folate and ferritin results and ranges

Personally my kidney pain improved gluten free and slowly faded after T3 added. But I have Hashimoto's and DIO2 and endoscopy confirmed gluten intolerance

Ginny52 profile image
Ginny52 in reply toSlowDragon

My gp is pretty good, I’m lucky since the endos have been so unhelpful. My vit d was low, I think in the 20s, but he gave me 25000mcg ampoules to load up, and by March it was good and I’ve been going in the sun, although I didn’t know it washed off!

I realise I can’t just reduce Levo in such an unplanned way with nothing definite in place for the inevitable return of hypo symptoms. I really didn’t expect my last hospital appointment to be such a bust- I’d love to know if nhs endocrinologists have ever diagnosed Sheehan’s Syndrome. I owe that entirely to this forum without which I would still be aching and shivering on the sofa under 3 coats like I did for eighteen months. Nhs endos are very resistant to patient input. Xxx

SlowDragon profile image
SlowDragonAdministrator in reply toGinny52

You will likely need ongoing maintenance dose of vitamin D or levels will just drop again

It's trial and error what dose each person needs. Once you Improve level, very likely you will need on going maintenance dose to keep it there. Retesting twice yearly via vitamindtest.org.uk

Also read up on importance of magnesium and vitamin K2 Mk7 supplements when taking vitamin D

betterbones.com/bone-nutrit...

articles.mercola.com/sites/...

healthy-holistic-living.com...

articles.mercola.com/sites/...

betterbones.com/bone-nutrit...

easy-immune-health.com/magn...

Good levels of B12, folate and ferritin essential too

Ginny52 profile image
Ginny52 in reply toSlowDragon

Wonderful-thanks!

jgelliss profile image
jgelliss in reply toSlowDragon

SlowDragon

I Couldn't Agree with You More .

"Personally my kidney pain improved gluten free and slowly faded after T3 added. But I have Hashimoto's and DIO2 and endoscopy confirmed gluten intolerance " .

It took me years to figure this out . Dr's either don't know much about if at all .

SD Thank You So Much for making us aware and confirming something I learned the hard way .

bd79og profile image
bd79og

So sorry you had such a bad visit to the endo. Having a non supportive meeting with a medical professional when you re feeling ill can easily increase feelings of being unable to cope and anxiety and have nothing to do with the dose of the medicine or your hormones but is a natural reaction to being let down.

I generally find that very small changes to levothyroxine have huge effects especially on anxiety so my advice would be to cut out one quarter of a tablet a week for a couple of months and see if this helps rather than take the dose all the way down to half.

Finding a more supportive doctor would also help but is not easy, thyroid uk have a list but I find chasing the vain hope that a doctor will help is less certain than trying to fix things myself. Good luck with it all, hope you feel better soon.

Ginny52 profile image
Ginny52 in reply tobd79og

My doctor problem is completely because the problem is an unusual one, and I can’t find an nhs endo prepared to pay for diagnostic tests. I just have to try and stay afloat till I can pay. I think there’s only one who can do this, sadly not one we would agree with re treatment, but that doesn’t matter- I’m only asking for diagnosis.

At least I feel an awful lot better than I did with the nhs recommended plan- no treatment at all!

Thank you so much bd! X

Ginny52 profile image
Ginny52 in reply toGinny52

Does anyone on here have any Uk nhs experience with getting secondary hypothyroidism (Sheehan’s) diagnosed? X❤️

thyroidx100 profile image
thyroidx100

I cannot take milk yet in levothyroxine there is lactose. I been taking it for 21 years. Still overweight, tired,etc

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