Levo and headaches: I have auto-immune hypo... - Thyroid UK

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Levo and headaches

thyroidquestions
thyroidquestions

I have auto-immune hypo-thyroidism. I got totally disabling headaches sometimes and energy problems often on taking Levo over a long time. I secretly went to high quality NDT combo equivalent to test any effect and the headaches faded by 75% in intensity and duration after 2-3 days. Back to Levo after 2 weeks to 'do the right thing' and also to test the validity of my suspicions and same headaches re-emerged after 3-5 days, fading after 2-3 days once off again. But now I'm stuck as to what to do if Levo is the only precription. Two questions:

1. Are ongoing headaches a realistic side effect of Levo or am I misattributing the cause? My diet is careful and healthy (gluten, dairy, sugar, vits, E-'s etc) and I've tried to control for every other possible cause of the headaches.

2. Are new-to-use headaches normal, but will fade if I persevere? How long to acclimatise to them? And even if I acclimatise is this stuff right to optimise my system if my body hates it so much at the start?

I have an endo appointment for the first time in a few weeks and want to present objectively and get a good outcome from the meeting. Of course, a Levo solution is simplest.

PS. No it wasn't Teva brand - Wockhardt and Activas. Any informed help appreciated.

19 Replies
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SeasideSusie
SeasideSusieAdministrator

I have been taking Levo for over 40 years, have had daily headaches for most of them and never made the connection until recently.

What was your "high quality NDT combo"?

My experience has shown me that I will get nothing but Levo from my GP, and I tried NDT 20 years ago with a private doctor but it wasn't for me.

In your shoes I would discuss your experiment with the endo and if all you are offered is to continue on Levo then decide whether you want to go it alone with NDT.

Thank you SeasideSusie. Armour. I'm sorry you've had so little luck with it. Do you think the Levo causes the headaches?

SeasideSusie
SeasideSusieAdministrator in reply to thyroidquestions

Headaches is listed as a potential side effect of Levo in the Patient Information Leaflet so it's a possibility that it's the Levo causing them.

Yes I noticed that. Thank you. Not sure whether the pill makers and the profession think that the headaches is a symptom of sub-optimal blood levels rather than a side effect of the levo in and of itself. Any idea which the makers/profession thinks on this one?

SeasideSusie
SeasideSusieAdministrator in reply to thyroidquestions

I believe they see it as a side effect. I use Actavis and the PIL says

"Tell your doctor or pharmacist if any of the following side effects continue, get worse.......

.....

Hi

We very, you must not change the dose or stop taking the tablets without talking to your doctor first.

HEADACHE

.....

etc"

Headaches are listed as a side effect of the two inhalers and the maintenance antibiotic I take for my lung disease but I have had the headaches for many more years than I have been taking the inhalers and antibiotic so I attribute mine to the Levo.

shaws
shawsAdministrator

Have you tried to change the make of the levo you take to another as sometimes it is fillers/binders which may be the culprit.

Some of us cannot improve on levothyroxine of whatever make it is and I am one. I am well on T3 alone.

Wil try....thank you. Glad you got sorted.

shaws
shawsAdministrator

Try taking one anti-histamine tablet 1 hour before your levo and if you don't develop a headach it will be a sensitivity to the levo. The GP will have to give you another prescription and ask pharmacy for an alternative make.

Thank you shaws. I did take an anti-histamine. No benefit - bad headache still. Could that imply anything?

shaws
shawsAdministrator in reply to thyroidquestions

I cannot answer but have read that headaches can be a side-effect of levothyroxine. I'd trial another make and if you still get headaches I'd look at adding T3 to reduced T4 but it is difficult to get T3 at all in the UK as it has been withdrawn from prescribing..

Thank you shaws. Will try with GP and test different brands. Happy to share my insights as the conservative experimentation goes on!

shaws
shawsAdministrator in reply to thyroidquestions

If we take medication or hormones, we don't expect to feel worse.

Good point! Will remember that when talking to GP/endo :).

shaws
shawsAdministrator in reply to thyroidquestions

We expect them to relieve ALL symptoms but we have to have hormones which suits us but they have restricted us to levo alone nowadays with the result that more are unwell.

tinyurl.com/yaqhacwk

I get headaches if I take Teva brand so I ask for an alternative brand and have been fine.

Thanks CLIles. As mentioned in my post I got off TEVA for over two weeks but no improvement. I'm on Wockhardt (25mcg) and Activis (100mcg) = 125mcg

Sorry didn’t see the post, hope you feel better soon x

I was just about to say the same as shaws as some sort of allergy to the different fillers is common. My e t question would be which brand are you taking as I know TEVA has given many problems. May be worth having a word with your pharmacist and see if she can help.

Thanks silverfox7. As mentioned in my post I got off TEVA for over two weeks after seeing the feedback on this forum but no improvement. I'm on Wockhardt (25mcg) and Activis (100mcg) = 125mcg.

Any suggestions as to most likely next moves re brands? Wockhardt only, maybe?

I'm gonna get to the bottom of this poor response to LT4 if I can!

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