Topiramate and Levothyroxine.: Hi My daughter has... - Thyroid UK

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Topiramate and Levothyroxine.

lucylocks profile image
18 Replies

Hi

My daughter has to take Topiramate for migraines.

She was started on 50mcg. levo. as her TSH was 6.3. Six week later when she had her bloods redone her TSH had only fallen to 5.8. She did some research and found out that Topiramate can have an effect on thyroid meds. and wondered if this was the reason why her TSH had not come down much, so she stop the Topiramate.

She has now increase her levo. to 100mcg. but her migraines have become bad again so she has gone back on 75 mg of Topiramate. This will need to be increased gradually to help the migraines.

Some of her hypo. symptoms have returned so we think her TSH may have risen again. She has spoken to her Doctor but she said Topiramate can cause hypEr not hypo.

Is anyone else taking Topiramate or can anyone offer any advice.

Many thanks.

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lucylocks profile image
lucylocks
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18 Replies
helvella profile image
helvellaAdministrator

lucylocks ,

There are mixed reports - and lots of uncertainty - about the effect of topiramate on thyroid hormones. Most papers refer expressly to seizures/epilepsy. The abstract below is from the most recent paper I could locate.

Seizure. 2017 May;48:7-10. doi: 10.1016/j.seizure.2017.03.011. Epub 2017 Mar 19.

Effects of antiepileptic drugs on thyroid hormone function in epilepsy patients.

Shih FY1, Chuang YC2, Chuang MJ1, Lu YT3, Tsai WC3, Fu TY4, Tsai MH5.

Author information

1 Departments of Neurosurgery, Kaohsiung Chang Gung Memorial Hospital, Chang Gung University College of Medicine, Kaohsiung, Taiwan.

2 Department of Neurology, Kaohsiung Chang Gung Memorial Hospital, Chang Gung University College of Medicine, Kaohsiung, Taiwan; Center for Translational Research in Biomedical Sciences, Kaohsiung, Taiwan; Department of Biological Science, National Sun Yet-Sen University, Kaohsiung, Taiwan; Faculty of Medicine, Kaohsiung Medical University, Kaohsiung, Taiwan.

3 Department of Neurology, Kaohsiung Chang Gung Memorial Hospital, Chang Gung University College of Medicine, Kaohsiung, Taiwan.

4 Department of Pathology and Laboratory Medicine, Kaohsiung Veteran General Hospital, Kaohsiung, Taiwan.

5 Department of Neurology, Kaohsiung Chang Gung Memorial Hospital, Chang Gung University College of Medicine, Kaohsiung, Taiwan; Department of Computer Science and Information Engineering, Cheng Shiu University, Kaohsiung, Taiwan. Electronic address: menghan@cgmh.org.tw.

Abstract

PURPOSE:

Patients with epilepsy are frequently required to take antiepileptic drugs (AEDs) for a long period of time. Many studies have shown that AEDs have a negative influence on endocrine function including the thyroid gland, however the risk factors for the development of low thyroid function in these patients are unclear. This study aimed to determine the potential risk factors of low thyroid function in patients with epilepsy.

METHOD:

This was a cross-sectional study including 298 patients with epilepsy. Patients with previous thyroid disease were excluded. Epidemiologic data, type of epilepsy, etiology, the age of seizure onset, duration of epilepsy, intractable epilepsy, and number and dosage of AEDs were recorded. Levels of free thyroxine (fT4) and thyroid stimulating hormone (TSH) were measured.

RESULTS:

Fifty-two of the 298 (17.4%) patients had low fT4. Older age (P=0.004), female sex (P=0.014), longer duration of epilepsy (P=0.001), and intractable epilepsy (P=0.009) were significantly associated with low fT4. Regarding individual AEDs, carbamazepine (30.1%), topiramate (28.6%), and levetiracetam (24.3%) were significantly associated with the presence of low fT4. After stepwise logistic regression of all significant variables, female sex, older age, three or more AEDs, and carbamazepine were independent risk factors for low fT4.

CONCLUSIONS:

Female patients with epilepsy and an older age, AED polytherapy, and carbamazepine treatment had a higher risk of low fT4. Thyroid function in these patients should be monitored closely.

Copyright © 2017 British Epilepsy Association. Published by Elsevier Ltd. All rights reserved.

KEYWORDS:

Antiepileptic drugs; Epilepsy; Risk factor; Thyroid function

PMID: 28364656

DOI: 10.1016/j.seizure.2017.03.011

ncbi.nlm.nih.gov/pubmed/283...

lucylocks profile image
lucylocks in reply tohelvella

Many thanks for the information, I will pass it on to my daughter.

So if the Topiramate causes a low T4 level, then a higher dose of levo. would be required whilst taking it.

helvella profile image
helvellaAdministrator in reply tolucylocks

lucylocks,

Yes, it does look as if a higher dose of levothyroxine might be required.

A very quick read of the full paper (available here seizure-journal.com/article... ) confused me. There are several mentions of TSH early on - but they fizzle out. The problem is that they do not make it clear whether the low FT4 is signalled by rising TSH.

This is important if the only test your daughter gets is TSH (as for so many of us).

lucylocks profile image
lucylocks in reply tohelvella

I see, so she needs T4 testing along side TSH to get a clearer picture.

Obviously she will have to get this done privately if Doctor only tests TSH.

Even if TSH is at a good level, it does not mean the T4 will be at a good level, it could be low.

This can happen to us hypo's who are not on Topiramate also.

Ideally we should all have T4 tested along with TSH, even better T3 tested as well. No chance of that through the NHS though.

helvella profile image
helvellaAdministrator in reply tolucylocks

Afraid so - and if doing TSH and FT4, get FT3 as well - from the same blood draw.

lucylocks profile image
lucylocks in reply tohelvella

Yes I will tell her to do just that.

Many thanks.

Gracefulgiraffe profile image
Gracefulgiraffe

I was given this for migraines too about 6 weeks ago by a locus dr. 2 weeks later when my gp came back from holiday and immediately took me off it and said she would never have put me on it as it can cause severe depression. Not good for me as I have mh issues anyway. So just be careful she put me on a very low dose of amitriptaline instead

lucylocks profile image
lucylocks in reply toGracefulgiraffe

Thank you for your reply,

my daughter took it before she was diagnosed hypo. and she seemed O.K. on it.

Having said that she did have periods of feeling depressed but we put this down to her then undiagnosed hypo. now wondering if it could have been the Topiramate.

silverfox7 profile image
silverfox7

I don't know about the drugs but was just going to suggest you take them far apoartvif you can to hopefully lessen any affects.

lucylocks profile image
lucylocks in reply tosilverfox7

Thank you silverfox7

I will tell my daughter to take them as far away from her levo. as possible.

Thank you.

lucylocks profile image
lucylocks

Hi

many thanks for your reply.

She does know it can cause a weight reduction but is quite happy about that.

She has celiac, so is gluten free.

Before her hypo. diagnoses she had eight years of feeling unwell with all the usual hypo. symptoms but of course Doctors would not treat her as her TSH was in "range".

She was tested for Addison's but it came back negative.

An endo. she saw ordered a scan on her pituitary(private endo) found this was O.K. but found two incidental brain anuryisms. They inserted stents into them, and she has to stay on a low dose aspirin to keep her blood thin. Of course this was a very worrying time for us, but thankfully the operation went well.

It was after this the migraines started really bad, the consultant said this can happen. She did have migraines when she was age ten but she seemed to grow out of them.

When she first took the Topiramate she was O.K. with them, we did not notice any adverse effects, like spending too much, not that we would notice anyway as she has always been inclined to spend money as though it has just come into fashion.

Please to hear the Topiramte worked for you and now the melatonin, I will tell my daughter about it.

Best wishes.

thyroidquest profile image
thyroidquest

I was prescribed this for daily migraines. I also take t3 and levo. It worked at first but as after a few weeks I found that I had the dreadful (but listed) side effect that it stopped me from sleeping - at all!!!! Obviously I had to stop taking it. What scared me was the possibility that it might mess with my sleep/wake cycle permanently. Luckily it returned to normal after about a week. I now take 400mg of magnesium citrate (600mg was recommended by the neurology dept at St George's hospital for migraines) and this is keeping the migraines at bay. It also helps with constipation. I take it 4 hrs away from my thyroid meds. I believe this is a safer option than topirimate...best of luck

lucylocks profile image
lucylocks in reply tothyroidquest

Many thanks for your reply,

that is very interesting about the magnesium and so pleased to hear it is keeping your migraines at bay.

I will tell my daughter about it.

Thank you again.

lucylocks profile image
lucylocks

Thank you,

yes she is still taking the aspirin, she has to.

I will make a note of Plaquenil, thank you.

Just re read your replies and see you did ask if she had other symptoms (sorry I first read it as other illness)

Her other symptoms are mainly thyroid related.

She does not get the aura with her migraines Sometimes she feels nauseous with them and occasionally vomits when they have been severe.

I do hope you have your other conditions under control.

lucylocks profile image
lucylocks

It really is awful when you do not get any support for thyroid problems.

My daughter had symptoms for years before diagnoses. I have had problems with Doctors reducing meds. because of TSH. My Doctor said she had to stick to the guidelines, but then admitted endocrinology needs a complete overhaul, and said, this will not happen for ten years or so. So what are we to do in the meantime

How can they stop your GF prescription if you are celiac. My daughter still gets bread on prescription but nothing else. They stopped GF pasta and pizza bases as the Doctor said they are unhealthy. Surely pasta or a pizza once a week is not that bad. It is all a money saving exercise.

I read one so called expert saying why should celiacs get GF on prescription, as it was costing the NHS millions a year, when you can buy the bread cheaply enough from the supermarket.

I was fuming, how can £2.50 for a small loaf be cheap compared to £1 or so for a large loaf of normal bread.

Sorry rant over.

Many thanks for the offer of P.M.

Best wishes to you.

lucylocks profile image
lucylocks

Yes a lot of people on low incomes will not be able to afford GF bread and other products.

I do feel though the GF manufacturers are exploiting by charging so much for their products.

We stopped at a fish and chip shop last week which did GF and they charged an extra 50p for it.

Do you know if all GF prescriptions are being stopped, my daughter is still getting her bread on prescription, maybe her surgery have not got round to informing patients yet.

lucylocks profile image
lucylocks

I see thank you.

miss_sun_shine profile image
miss_sun_shine

Thank you all so much for the education. I have been a migraine sufferer for years and am allergic to drugs like imitrex and have shied away from anything other than pain medication. Recently my doctor convinced me to go on topamax .25 at first the side effect were awful but after reading up on it, some people said if you stick with it, it will get better. I have now been increased to 50 x 2 and now have low TSH. They are baffled (I guess that's why they call it doctors practice). Now I have something to further educate myself on. Again, thank you all so much, good luck to everyone.

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