This is all my doctor ran for me on thyroid. I have been on gabapentin for 4 years for trigeminal neuralgia and recently read that it might cause some havoc with my thyroid. I have gained 35 pounds in less than a year, my hair is thinning at the temples, I am extremely irritable/agitated easily, dry skin, dry eyes, constant exhaustion, memory issues, trouble concentrating or even expressing myself, etc. Based on the test results I don't think she will be open to running any further tests. I am D insufficient and just tested pre-diabetic. I came home very discouraged.
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cavgirl
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Poor you. You sound as if you have been through the mill and back.
I can not comment on test results but will say I function best on a much lower TSH level.
I take it you are not on any thyroid meds? Have you had any blood tests for vitamin levels lately? It is advisable to have your VitD, Vit B, folate and ferritin done as any deficiencies can cause any future thyroid meds not to work too well.. Some other person more knowledgable than me will be able to advise you much better soon.
id say get a new doctor or ask to be referred to an endocrinologist so they can treat you properly...sorry that you are feeling so bad...sometimes you have to take the power back.. very best of luck to you...
Ask GP to test your antibodies. Give her a copy of the 'interpretation ...'.
Unexplained weight gain, pain, etc are all clinical symptoms of hypo. Has she tested B12, iron, ferritin and folate as well as Vit D. We should be towards the upper levels of these.
Awful for you, Cavgirl.
What is your current doc doing about your low vit D? And have you had your Vit B12 tested? If nothing is going to be forthcoming from the doc, supplement yourself. Anyone ailing should supplement with a good quality multi-vitamin and mineral. Although as you probably have a malfunctioning thyroid avoid iodine. At least until diagnosed.
Jayh is right: you need a more helpful doctor. Apart from the possibility of the meds you're on affecting your thyroid, it is quite possible that your condition is thyroid-related in the first place.
Hi Cavgirl! Have we talked before? I suspect we might have. I met three people in a row, all with TN, a very rare occurrence, and now I have lost sight of who they all were! If we have talked, please forgive me, but you are a fellow TN sufferer - I'm very pleased to see you here, although YOU aren't, doubtless.
I recently got 'subclinical hypothyroid' test results so I know how you feel. I have the exact same symptoms as you, except for the thinning hair. Instead I've lost hair on my body - no where I might want to lose it though, nothing so useful!
Unfortunately, your Gabapentin is causing a lot of the exhaustion, memory issues etc. That's what anti-convulsants do, so there is a good chance they are nothing to do with your thyroid. They just have crappy side effects. But thinning hair and weight gain is probably nothing to do with Gabapentin, although, again, the weight gain could simply be because Gabapentin makes you so tired and 'lazy' you do less!
I checked when I got my test results whether my drugs (Carbamazepine and Gabapentin) might impact on my thyroid, but all I could find was that they "may cause dysfunctional test results"; it didn't say in what way, or whether it was genuinely impacting on the thyroid or just making the test results wonky. Can I ask where you read about Gabapentin causing trouble with the thyroid? If you have any links or can point me in the right direction, that would be great.
Can I also ask you what dose of Gaba you are on? And four years is a long time - is it not controlling your pain fully, or do you get attacks without it?
Hi Chancery! No, we haven't talked before, at least not here as I am new. Do you happen to belong to LivingwithTN? If so, I am shadowne there. That is how I found this board through a discussion about so many of these symptoms.
Re: gabapentin, I am currently on 1200 mg daily but for a short while had gone up to 2100 mg. Only in the last year have I had to do large increases as you probably know that it often stops being as effective. I was going through a great deal of stress at work as I was being bullied by management and the HR clerk and when I was injured everything snowballed. I have lost tens of thousands due to their negligence which brings on it's own stress, lol. Slowly, I am tapering down the gabapentin on my own and appreciating the cloud lifting a bit. I have tn2 so it is more of a constant but my biggest trigger is stress. Very rarely do I have the shocks. There is the trade of going the year before diagnosis without a day of relief. Looking back, I don't know how (why?) I kept going to work every day in that pain.
I found the information regarding possible endocrine side effects on Drugs.com as well as other sources but I cannot recall the others. From
drugs.com it states possible side effects of hyperthyroid, hypothyroid, swollen testicles (ouch!!), goiter, etc. Also, appearance cushingoid. As an entertaining aside - side effects reported postmarketing have included breast enlargement. No kidding! I am just under 5' and mine are huge, which makes me feel even more like a cow. So much can be dismissed to the medication but I hate to miss treatment if it is necessary.
I took it upon myself to call one of the best endocrinologists in town and set an appointment. I'm not sure my primary doctor will back it up at this time but I pay $675/month for my insurance and fortunately for now it does not require a referral to go to a specialist.
Hi Cavgirl, I'm delighted! I can't believe I've met someone else with TN - what are the odds? Outside of TN forums, this is the place where I've met the most TN patients, Now, whether that's because thyroid is a more common disease and therefore there are just more people here or whether it's because thyroid is associated with TN, I do not know. I am always desperately trying to find a connection to get to the bottom of my illness. As you know, docs are not interested in the causes of TN - they just want to give you meds and send you on your way, so I'm doing all my own research. That's how I discovered I was 'subclinical hypothyroid'.
Poor you, being a TN2 sufferer. You always have much more trouble with constant pain, and trying to find meds that work well. I'm a TN1 sufferer and was very lucky to discover that B12 injections worked for me, at least they have so far. I was on 600mg of Carbamazepine and 600mg of Gabapentin, but ever since B12 started to work its magic I've been able to get down to only 200mg of Gaba (from today!) plus the Carbamazepine. So far the B12 is holding its own, but I am afraid of removing the Carbamazepine - that's the heavy lifter, in my book. But fingers crossed.
You have been on seriously HIGH doses, you poor thing. No wonder you have the mental confusion issues. I don't know how you've coped with a toxic work environment while being so heavily doped up and in pain. Stress seems to be a universal trigger no matter whether you are type 1 or 2. I know when I am ranting or raving because my mouth suddenly gets more sensitive and touchy!
Thanks a lot for the leads on the endocrine effects. I'll go and have a read. It never occurred to me to look it up under the drug names - blame that on the drugs; they rot our brains! But if they ARE having an effect on thyroid function then you must surely be in danger, since you've been on them for 4 years. I feel my thyroid problems have been around a long time, but I suspect the drugs have maybe pushed my tests into the failure range. Possibly if I came off the drugs entirely they'd recover, but I've suffered with dry skin, constipation, depression, apathy and the likes for years before I was on anti-convulsants, so I'm not entirely convinced my result is 'fake'.
Of course, if the drugs are actually impacting on the thyroid and not just skewing the results, that would be sufficient to make my thyroid situation worse, hence me feeling like crap. But who doesn't feel crap on these meds?!
P.S. I do belong to LivingwithTN; I'm 'woman with the electric teeth'!
Hi, Chancery and Cavgirl - I had TN a good few years ago. Got up to 800mg of Carbemazepine at the worst, then gradually reduced. Luckily not had it come back. But I do know someone who suffered daily and he had an MVD and it was very successful. Have you been given this option?
Hi Mistydog, ANOTHER TN sufferer; this really cannot be a coincidence! Only tonight I discovered that T3 plays a role in the demyelination/remyelination of nerves. Why isn't this part of the routine investigation when you get TN? Why don't they check thyroid function automatically; it seems so significant.
No, I was considering MVD, earlier in the disease, when I was having a lot of trouble with heavy does of drugs. But my neurologist laughed at me when I suggested MVD. It actually caused me to make a formal complaint against her. Fat lot of good that did me!
I was never able to get up to 800mg of Carbamazepine, hence me taking Gabapentin, but from today I am now on only 100mg of Gabapentin and 600mg of Carbamazepine - all thanks to B12 injections. Due another one tomorrow, thank God. It always gets a bit patchy by week three!
I didn't really get a gradual reduction in my pain. As soon as I started B12 injections it began to get better, but nothing spectacular, then suddenly two days after my second maintenance dose the pain just disappeared. It was amazing!
How long have you been in remission now? And did your thyroid treatment have anything to do with it, do you think? Are you hypothyroid? Sorry - so many questions. I'm just thrilled to find so obvious a connection between the two things. So far, other than B12, I was hitting dead end after dead end.
I never made a connection at the time.. And the doctor didn't mention it either. My current gp said that nerve problems are common in hypothyroidism and I get lots of random shooting pain, but they are very transient, unlike the TN. I suggest you seek a second opinion re the MVD, unless you are happy to continue with the B12 injections
I haven't had it for 7 or 8 years, luckily. And once the pain had gone, I left it a few months before gradually reducing the dose. I hated the brain fog on carbemazepine, but I have never been the same since. Now I am on NDT, it's starting to lift a bit.
Yeah, Mistydog, I know what you mean about the random shooting pains. I get weird 'electric' pains all the time, all over my body - from sudden wince-making electric shocks up my legs to strange burning pains over my knuckles, like I had yesterday! But no, nothing like TN pain - that is extra special.
I was at the doc's today, arguing for a FT3 test, but he wasn't having it. When I whipped out these studies, and their connection between T3 and trigeminal neuralgia, he said, and I quote, "But you don't have a demyelinating disease. TN isn't a demyelinating disease."
I normally don't get off the point with him because we don't have the time, but I really had to take him to task on that one. I actually had to come home and check it again on the internet because I thought 'Have I had it wrong all this time?' But I haven't. TN is taken to be a demyelinating disease because the nerve often shows damage due to demyelination. Not always, but often. I swear to God I wonder sometimes if he EVER picks a book up or he just regurgitates everything he read 30 years ago.
It sounds like it. I often wonder if doctors believe that patients LIKE spending hours in surgery waiting to be patronised. I hope you can find all the information you need and smother him with it.
Oh, I intend to. After today, which was one battle too many, I've decided to put my theories and the research tests I'd like to do in a letter so that I have time to explain them properly. Maybe educate him on TN while I'm at it!
Chancery, sorry to respond 3 months late. Re: your doctor arguing that tn is not a demyelinating disease, have you ever watched Dr. Casey's video from one of the tn conferences? He states that the entire training that dr./ neuros(?) receive on tn is something like a paragraph in their textbooks. There is so much great info in that video. If you haven't yet seen it, I highly recommend watching/listening to it.
Hi Cavgirl, don't worry, better late than never. Always keen to have anything on TN; info on that is rarer than hen's teeth! I have watched one of Ken Casey's videos, but not sure if it's the one you mean. Do you have a link, or anything I can track it down with, in case it's one I haven't seen?
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