Hypothyroidism along with epilepsy

Posted by jaderm @jaderm, 6 days ago

Hello. I’m not sure if anyone has experienced hypothyroidism and epilepsy but I’ve had epilepsy for 20 years barely diagnosed with hypothyroidism. I’m on 75mg generic synthroid. I can’t get a straight answer from my obgyn if levels are good. My epileptolgist is Great at treating my epilepsy but doesn’t believe hormones play a role as I have now started to faint with seizures. I’m either freezing all the time of hot. Periods come at different times of the month. I’ve been waiting for a referral to a endocrinologist with no luck. I’ve done so much research I wish I could just go to the Mayo Clinic if it were only that easy. I live in New Mexico . Any info would be greatly appreciated

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Hello @jaderm and welcome to Mayo Clinic Connect. I am sorry to hear you are having trouble with Hypothyroidism and epilepsy.
I would like to invite @upartist to the discussion as I know they have dealt with thyroid issues among other conditions.

There is a Mayo Clinic located in the neighboring state of Arizona in Scottsdale. Have you looked into possible getting an appointment there?

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Hello Jaderm. Amanda, the moderator, mentioned that there is a Mayo facility in Arizona. You may be able to access care there, being in New Mexico. It is confusing and frustrating to experience symptoms in a combination of systems, such as endocrine issues along with neurological issues. Each can be triggered by the other, and they can become a circle of stressors. The Mayo group should be able to approach you as a team, starting with the internist who will be your point guard, so to speak. That physician will refer you into the appropriate specialties. Some parts can be done by telemedicine in advance of the trip over. Endocrinology and Neurology are intimately connected and do effect each other. Your internist will connect your dots, with all the info in one spot. Mayo Docs communicate well with the primary care providers. This facilitates really nice continuity of care, so you can take it home for the long haul. I personally have managed my hypothyroidism for 45 years with supplemental thyroid. It is the interplay of combination issues that require a sophisticated and empathetic team approach that allows me to troubleshoot at home. Epilepsy is complicated. Fainting is scary and needs attention. I hope this helps. Good luck!

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@amandaburnett

Hello @jaderm and welcome to Mayo Clinic Connect. I am sorry to hear you are having trouble with Hypothyroidism and epilepsy.
I would like to invite @upartist to the discussion as I know they have dealt with thyroid issues among other conditions.

There is a Mayo Clinic located in the neighboring state of Arizona in Scottsdale. Have you looked into possible getting an appointment there?

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I haven’t yet but seriously thinking about it. As I can’t drive and even though I have a wonderful support system it would take a lot of planning. I’d also have to take a leave of absence from my job. I know my health is the most important but it took 20 years for me to even be able to work for which I’m so grateful for. My epilepsy Dr is such a great Dr. I just don’t understand how he can think these don’t tie together. Thank you so much for your response. I definitely need to check into how a appointment works.

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@upartist

Hello Jaderm. Amanda, the moderator, mentioned that there is a Mayo facility in Arizona. You may be able to access care there, being in New Mexico. It is confusing and frustrating to experience symptoms in a combination of systems, such as endocrine issues along with neurological issues. Each can be triggered by the other, and they can become a circle of stressors. The Mayo group should be able to approach you as a team, starting with the internist who will be your point guard, so to speak. That physician will refer you into the appropriate specialties. Some parts can be done by telemedicine in advance of the trip over. Endocrinology and Neurology are intimately connected and do effect each other. Your internist will connect your dots, with all the info in one spot. Mayo Docs communicate well with the primary care providers. This facilitates really nice continuity of care, so you can take it home for the long haul. I personally have managed my hypothyroidism for 45 years with supplemental thyroid. It is the interplay of combination issues that require a sophisticated and empathetic team approach that allows me to troubleshoot at home. Epilepsy is complicated. Fainting is scary and needs attention. I hope this helps. Good luck!

Jump to this post

Thank you so much for reaching out. I know that a thyroid problem messes with all parts of the body. I’m afraid it’s my heart even though I don’t feel any pain in my chest. I thought I was going through pre menopause but turned out my thyroid was super low. Dr said it was in the toilet. The way I understand it is when you have blood work done they also need to be checking T3 and T4. Something like that. This is all just so confusing

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Hi Jaderm. So is your thyroid dysfunction new? How long have your periods been off schedule? Is your primary care Doctor treating your hypothyroidism? What is your age? Do I understand correctly that your (thyroid stimulating hormone) TSH is high, and the circulating T3,T4’s are low? The supplemental thyroid generally requires a gradual increase in dosage if the circulating levels start out really low, in order to prevent unwanted reactions from a sudden increase. Is that what your treating physician is doing? Then blood levels should be monitored until they stabilize. Blood pressure and heart rate are always affected by the circulating thyroid levels. Does your physician have a cause of the thyroid dysfunction? (Thyroid gland, pituitary gland, or other?) That should be clarified, because treatments would be different accordingly. Your physician who is managing your seizures needs to be kept directly in the loop of communication, because seizure meds are far reaching and may have significant side effects and drug interactions. I assume you have another T3 T4, and TSH within 3 months from your last one scheduled? If not, you might want to pursue that in lieu of your fainting. If the seizures are causing the fainting, that needs to be addressed. Falling is very dangerous. Hopefully you have not fallen. I hope things get better for you.

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@upartist

Hi Jaderm. So is your thyroid dysfunction new? How long have your periods been off schedule? Is your primary care Doctor treating your hypothyroidism? What is your age? Do I understand correctly that your (thyroid stimulating hormone) TSH is high, and the circulating T3,T4’s are low? The supplemental thyroid generally requires a gradual increase in dosage if the circulating levels start out really low, in order to prevent unwanted reactions from a sudden increase. Is that what your treating physician is doing? Then blood levels should be monitored until they stabilize. Blood pressure and heart rate are always affected by the circulating thyroid levels. Does your physician have a cause of the thyroid dysfunction? (Thyroid gland, pituitary gland, or other?) That should be clarified, because treatments would be different accordingly. Your physician who is managing your seizures needs to be kept directly in the loop of communication, because seizure meds are far reaching and may have significant side effects and drug interactions. I assume you have another T3 T4, and TSH within 3 months from your last one scheduled? If not, you might want to pursue that in lieu of your fainting. If the seizures are causing the fainting, that needs to be addressed. Falling is very dangerous. Hopefully you have not fallen. I hope things get better for you.

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I was diagnosed around 5 months ago. My periods have been messed up for awhile now. Before the thyroid diagnosis. I’m 36 and my obgyn is the one who caught my hypothyroidism and put me on 75mg generic synthroid. No I’m sorry that’s what I’m so confused about. If he’s doing blood work to look at all those. If that makes sense. When I ask his nurses if it’s in normal range they say they can’t answer that because everyone is different. If I understand right it’s supposed to be around 4 I believe. Yes I know when I faint it’s a seizure but I think this all ties together. I reached out to my epileptolgist for a referral to a endocrinologist with no luck yet. I haven’t had blood work done for my thyroid in awhile. So that worries me too.

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@jaderm

I was diagnosed around 5 months ago. My periods have been messed up for awhile now. Before the thyroid diagnosis. I’m 36 and my obgyn is the one who caught my hypothyroidism and put me on 75mg generic synthroid. No I’m sorry that’s what I’m so confused about. If he’s doing blood work to look at all those. If that makes sense. When I ask his nurses if it’s in normal range they say they can’t answer that because everyone is different. If I understand right it’s supposed to be around 4 I believe. Yes I know when I faint it’s a seizure but I think this all ties together. I reached out to my epileptolgist for a referral to a endocrinologist with no luck yet. I haven’t had blood work done for my thyroid in awhile. So that worries me too.

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Hi Jaderm. I can see why you have questions. If the gynecologist is the one prescribing the thyroid, he/she should be monitoring it right now and answering your questions regarding symptoms which may or may not be related. Primary care physicians can do the blood work and dosing as well. Has your fainting been addressed? Clarified? What are the triggers?

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@upartist

Hi Jaderm. I can see why you have questions. If the gynecologist is the one prescribing the thyroid, he/she should be monitoring it right now and answering your questions regarding symptoms which may or may not be related. Primary care physicians can do the blood work and dosing as well. Has your fainting been addressed? Clarified? What are the triggers?

Jump to this post

Yes, my gynecologist is the one who is monitoring it but I don’t think all the right blood work has been done to fully see where it’s at. Maybe I’m wrong. My epileptolgist is aware of my fainting episodes which I do know are seizures that’s why I’d rather him refer me but still haven’t received a call with the appointment .

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@jaderm

Yes, my gynecologist is the one who is monitoring it but I don’t think all the right blood work has been done to fully see where it’s at. Maybe I’m wrong. My epileptolgist is aware of my fainting episodes which I do know are seizures that’s why I’d rather him refer me but still haven’t received a call with the appointment .

Jump to this post

Hi Jaderm. First off I know Endocrinologists are hard to get into see. A very busy specialty! A call to your physician to check on the progress of your requested referral would be appropriate. Meanwhile your falls are an eminent danger to your health, which you clearly have worked very hard to improve. There are seizure alert devices out there and pulse oximeter devices, both of which have alarms which are connected to apps on phones. You mentioned that you have a good support network. That’s excellent! These people can be part of a team of your personal first responders. If you were to fall during a seizure and land in a low oxygen position, or fall and hit your head, or something else, your alert system could be triggered on your phone, which could then alert a first responder to come to your aid. In addition, you should take a look around at your environment and pick out potential sharp/hard objects which might injure your head. If you swim, make an emergency arrangement with a partner to swim with. Same with other exercise. You likely already have a medical alert bracelet/necklace. Regarding the thyroid, a call to request a follow up blood draw is perfectly acceptable . I hope these things help. Meanwhile, try to not fall. Good luck ❤️

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