At my wit's end, first ever post: I hope somebody... - Thyroid UK

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At my wit's end, first ever post

Dmbs profile image
Dmbs
8 Replies

I hope somebody can help, I have hasimotos, hypothyroid for 18months, every time I try to start levo within hours I get horrendous neck pain, stiffness and eventually a migraine. I have a private Endo who has tried me on very low dose of several different brands of levo +liquid and it happens every time, exactly the same, today after gp told me thyroxine is natural to the body and making me feel like I'm the only person in the world who can't take levo I tried again, same thing happened, I feel stupid, scared and lonely wondering if it's in my mind and don't know what to do next, really hoping I'm not the only one

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Dmbs
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8 Replies
Nanaedake profile image
Nanaedake

A lot of people have problems adjusting to levothyroxine if their vitamin and mineral levels are low. It's also a hormonal adjustment for your body so some feel worse before they begin to feel better.

If you've had your vitamin levels tested then post them here for advice and if not, ask GP to test B12, folate, ferritin and vitamin D and then post here. Also, if you post your thyroid test results along with the laboratory ranges, people can give you suggestions.

Have you got thyroid antibodies?

Dmbs profile image
Dmbs in reply to Nanaedake

My latest results are

TSH 7.43

Free T4 13.2

+Antibodies

Apart from weight gain I don't feel I have any symptoms, my T4 fluctuates but TSH is steadily rising, the neck stiffness and pain starts within about 45 mins with liquid 2hours ish with tablets, I have tried many different brands so ruled out fillers etc. If it is adjusting to hormone should it cause such dibilatating pain, it's very difficult to take something that makes you feel so ill

Dmbs profile image
Dmbs in reply to Dmbs

Sorry, also, all other tests you mention are ok

Nanaedake profile image
Nanaedake in reply to Dmbs

When you say your vitamins are all ok, have you seen the blood test results? They all need to be mid-range and vitamin B12 needs to be near top of range for our own thyroid or thyroid hormone to work well. We find people often post on this forum saying the doctor told them all vitamins are ok but when they post the actual results they are just bumping along the bottom of NHS range which means they won't keel over but when taking levothyroxine all vitamins need to be optimal it seems. Starting levothryoxine sometimes seems to unmask deficiencies. Just worth checking although it could be something else causing the problem.

Dmbs profile image
Dmbs in reply to Nanaedake

I will seek out my results and check thank you

jimh111 profile image
jimh111

Try supplementing with magnesium citrate. Hypothyroidism can lead to low intracellular magnesium. The body responds mainly to intracellular Mg but also extracellular (serum). Since the intracellular space is much larger it is possible that your extracellular Mg drops for a while which can cause muscles and the vascular system to contract a little leading to stiffness and migrane headache from the vasoconstriction. I must admit this is speculative but I think it's worth a try as many people are magnesium deficient. Do not take magnesium or calcium within a few hours of your levothyroxine.

Dmbs profile image
Dmbs in reply to jimh111

That certainly sounds like a possibility I will try that straight away, thank you

SlowDragon profile image
SlowDragonAdministrator

I would agree magnesium is a crucial mineral. I couldn't tolerate vitamin D (despite being deficient) until started magnesium

Another option might be to try getting use to Levo by also taking propranolol. Its not ideal (as slows thyroid hormone uptake), but is a recognised way of starting/increasing Levo dose if you can't tolerate it. It also is used to treat migranes. But if you have asthma you can't use it.

When body is actually starved of thyroid hormones it almost tries to use them up quicker than you can put them in, so propranolol can apply the brakes. Stops the peaks and troughs

Also gluten can be the culprit. It was for me. I could only tolerate Levo with propranolol as well (for over 19 years), until I went gluten free .....just a thought

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