I've recently discovered I have subclinical hypothyroidism. This may have played a contributory part in my TN, as I am being successfully treated with B12, which has sent my TN into remission - I hope!
My question is, how common is hypothyroidism amongst TN sufferers? Do you have it or have a family history of it? Have you read any studies about a connection between it and TN?
Any grist to my research mill most gratefully accepted!
Hi WWeT,Both my sister and my mother have it. I have not been tested yet. I only found out about this last October. I am going to be tested in April, when I go back for my cholesterol re-check.
I have hypothyroidism that was well controlled for several years before I got TN. Fortunately, I had a successful MVD about a year and a half ago and am no longer in pain. During my 9 months of type 1 TN symptoms, however, the Tegretol I took sent me back into uncontrolled hypothyroidism. Apparently, Tegretol interferes with the absorption of Synthroid so it was as if I wasn't taking my Synthroid. I have been working with my doctor for more than a year now, playing with my Synthroid dose, to get back in balance. Thankfully, I am finally there but that Tegretol sure did a number on my thyroid.
My mother, brother, aunt, grandmother, etc. all have hypothyroidism so it definitely runs in my family. Having said that though, I wouldn't think there is any connection to TN since hypothyroidism is somewhat common and TN is extremely rare. Also on the B12 subject, I've always taken a B12 supplement and have had normal levels. I added the sublingual B12 tablet shortly after my diagnosis and not long after that, my doctor checked my B12 levels and they were actually too high, yet my symptoms never slowed down. I continued with the sublinguals, keeping my levels high and it didn't make a dent in my pain. It may have possibly though helped my nerve heal itself after my neurosurgeon lifted away the arteries that were compressing it.
Hi Min. Yeah, given the strong genetic links in thyroid disorders it would be a very good idea to be tested for it. You're doing the right thing! Does either your mother or sister have TN?
Min said:
Hi WWeT,Both my sister and my mother have it. I have not been tested yet. I only found out about this last October. I am going to be tested in April, when I go back for my cholesterol re-check.
Hi Mybell. Coincidentally, I was just reading about the effects of Tegretol on thyroid, and apparently it can also cause "dysfunctional test results", so it is possible that's what mine is. The only way I'll know is if I manage to come off my meds fully (I'm lowering them at the moment). But yes, I did read that it can process thyroid medications in double-quick time, thus rendering them ineffective. It does this with loads of drugs. I took diazepam tranquilisers for a dental visit and it was as if I had popped a mint. Useless. It even processes plain old Paracetamol faster.
The B12 is a tricky one, because I wouldn't trust oral supplementation to treat a deficiency. It's known than B12 comes in two forms, active and inactive. You can have a lot of inactive B12, which will show up in your tests just the same but it won't be being used by your body. Also, there is a school of thought that believes something else may be going on of which we are not yet aware and high doses given by injection are the only way to go. Also, I think it depends how long you've had TN, how much damage has been done - plus there's always your own personal make-up.
I get what you're saying about the rarity of TN compared to thyroid, but if there is a genetic marker for TN that most people don't have but that it takes a thyroid problem to trigger, for example, the rarity wouldn't be relevant. The rarity of the TN gene would not be affected by the commonness of thyroid problems. God, I hope that makes sense - not off enough of these meds yet! Can I ask, anyone else in your family got TN?
P.S. Great that your op worked - long may it continue!
mybell said:
I have hypothyroidism that was well controlled for several years before I got TN. Fortunately, I had a successful MVD about a year and a half ago and am no longer in pain. During my 9 months of type 1 TN symptoms, however, the Tegretol I took sent me back into uncontrolled hypothyroidism. Apparently, Tegretol interferes with the absorption of Synthroid so it was as if I wasn't taking my Synthroid. I have been working with my doctor for more than a year now, playing with my Synthroid dose, to get back in balance. Thankfully, I am finally there but that Tegretol sure did a number on my thyroid.
My mother, brother, aunt, grandmother, etc. all have hypothyroidism so it definitely runs in my family. Having said that though, I wouldn't think there is any connection to TN since hypothyroidism is somewhat common and TN is extremely rare. Also on the B12 subject, I've always taken a B12 supplement and have had normal levels. I added the sublingual B12 tablet shortly after my diagnosis and not long after that, my doctor checked my B12 levels and they were actually too high, yet my symptoms never slowed down. I continued with the sublinguals, keeping my levels high and it didn't make a dent in my pain. It may have possibly though helped my nerve heal itself after my neurosurgeon lifted away the arteries that were compressing it.
They don't have TN. But my mother has complained about having TMJ and I often wondered if she has gotten misdiagnosed. :(
There's a LOT of people on here with TMJ. I remember trying to bring the possibility of it up with both my dentist and my doctor but neither of them wanted to hear it. I wondered if it might be causative in some way. I think one of the problems with medicine is once they have an 'answer' - TN is caused by a nerve being worn away by a vein - they discard anything that doesn't fit.
Min said:
They don’t have TN. But my mother has complained about having TMJ and I often wondered if she has gotten misdiagnosed.
hi. I have hypothyroidism and tmj (apparently).. I take a sub lingual vit b with added vit b12.My doc says i dont have low vit b12,but have low iron levels,so take iron tabs.
Hi Barbara. Have you actually seen your blood test results for B12? If you haven't, I'd suggest you get a copy. If they are under 400 mol (or whatever it is; I've forgotten already!) your doctor is, with all due respect, wrong. The British bottom limit for deficiency is set far too low (I remember you're in the UK, yes? Or am I completely suffering from a drug-induced bout of terrible memory, as usual!?). In Japan it's 500 mol, for example. Here I believe it's 200, so you really, really should check that - assume nothing.
Vitamin B12 deficiency goes hand in hand with hypothyroidism so you could be deficient and your TN could be a direct symptom of that. My B12 was 384, well over the alleged normal limit, but I patently was deficient because two months into B12 treatment my TN suddenly went into remission when the drugs couldn't rid me of residual pain. There's a book "Could it be B12?" which details the terrible ignorance about B12 and the suffering that goes with it. I'd recommend it.
I am treated by injection, by the NHS, incidentally. Taking tablets isn't likely to work if your stomach has a malabsorption issue, as it usually does with hypothyroidism. Seriously, it's very much worth checking; you have a lot of red flags flying there!
I was diagnosed hypothyroid during my pregnancy (I think pretty common), but this is also when my ‘gum/tooth pain’ (now diagnosed TN II) kicked into high gear and became an every day thing. Not sure if this is just coincidence - synthroid kept the hypo in check, but did not affect the TN pain. Post partum, my thyroid levels stabilized and I still have pain.
Wasn’t sure where to post about this, but has anyone ever noticed a correlation between allergy medication and TN pain?
i just checked it,it was 697. The neurologist says i am in remarkable health considering i have fat thyroid and low iron,dont feel it though lol.
Woman with the electric teeth said:
Hi Barbara. Have you actually seen your blood test results for B12? If you haven't, I'd suggest you get a copy. If they are under 400 mol (or whatever it is; I've forgotten already!) your doctor is, with all due respect, wrong. The British bottom limit for deficiency is set far too low (I remember you're in the UK, yes? Or am I completely suffering from a drug-induced bout of terrible memory, as usual!?). In Japan it's 500 mol, for example. Here I believe it's 200, so you really, really should check that - assume nothing.
Vitamin B12 deficiency goes hand in hand with hypothyroidism so you could be deficient and your TN could be a direct symptom of that. My B12 was 384, well over the alleged normal limit, but I patently was deficient because two months into B12 treatment my TN suddenly went into remission when the drugs couldn't rid me of residual pain. There's a book "Could it be B12?" which details the terrible ignorance about B12 and the suffering that goes with it. I'd recommend it.
I am treated by injection, by the NHS, incidentally. Taking tablets isn't likely to work if your stomach has a malabsorption issue, as it usually does with hypothyroidism. Seriously, it's very much worth checking; you have a lot of red flags flying there!
Ahope, that's interesting. I've seen the hypo/pregnancy thing discussed lots of places, but never a TN connection. You just feel they have to be linked though, don't you? I take it you have been checked for vitamin deficiencies though? And an interesting connection through allergy medications. After all, they are autoimmune connected and so is thyroid and, potentially, TN. It's like an ever-winding road.
Ahope823 said:
I was diagnosed hypothyroid during my pregnancy (I think pretty common), but this is also when my ‘gum/tooth pain’ (now diagnosed TN II) kicked into high gear and became an every day thing. Not sure if this is just coincidence - synthroid kept the hypo in check, but did not affect the TN pain. Post partum, my thyroid levels stabilized and I still have pain.Wasn’t sure where to post about this, but has anyone ever noticed a correlation between allergy medication and TN pain?
Oh 697 is cool. Can't see any problems with that - providing that wasn't taken after you'd been treating yourself for some time with B12. But I should think even if you had that's got to be half-decent and a safe level. Although again there's the active and non-active B12 thing. You could go with this on all day, it's a darn minefield!
barbara said:
i just checked it,it was 697. The neurologist says i am in remarkable health considering i have fat thyroid and low iron,dont feel it though lol.
Woman with the electric teeth said:Hi Barbara. Have you actually seen your blood test results for B12? If you haven't, I'd suggest you get a copy. If they are under 400 mol (or whatever it is; I've forgotten already!) your doctor is, with all due respect, wrong. The British bottom limit for deficiency is set far too low (I remember you're in the UK, yes? Or am I completely suffering from a drug-induced bout of terrible memory, as usual!?). In Japan it's 500 mol, for example. Here I believe it's 200, so you really, really should check that - assume nothing.
Vitamin B12 deficiency goes hand in hand with hypothyroidism so you could be deficient and your TN could be a direct symptom of that. My B12 was 384, well over the alleged normal limit, but I patently was deficient because two months into B12 treatment my TN suddenly went into remission when the drugs couldn't rid me of residual pain. There's a book "Could it be B12?" which details the terrible ignorance about B12 and the suffering that goes with it. I'd recommend it.
I am treated by injection, by the NHS, incidentally. Taking tablets isn't likely to work if your stomach has a malabsorption issue, as it usually does with hypothyroidism. Seriously, it's very much worth checking; you have a lot of red flags flying there!
I have it too.
Interesting, Jasmine. Can I ask which came first, your TN or the thyroid problem?
I ask about the allergy meds because (and I’m seriously scared to type this) I ran out last week and was too lazy to get a new bottle, so was off of it for a few days. Strangely, my pain turned into a weird numbness that I’ve never felt before and then eventually petered out. I didn’t think anything of it until I got crazy allergies a couple nights later and bought and restarted the meds. I woke up the next day and the pain was back with a vengeance. I was like a madwoman trying to figure out what I did differently but the allergy meds were the only thing I could think of, so I discontinued them again after a coup,e of days of pain. The next day I had that numbness again and then today a couple hours of numb/burning and nothing.
I have no idea if this is just a strange coincidence or they are related - but if allergy meds are supposed to decrease inflammation, I don’t see how stopping them would help. I’d love to know if anyone else has had a similar experience.
Btw I have no doubt that the hypothyroid (and my high c reactive protein levels) is somehow related to the TN - but no doctor seems to agree with me :/.
Thyroid problem started many years ago; TN symptoms started in September of 2013.
Woman with the electric teeth said:
Interesting, Jasmine. Can I ask which came first, your TN or the thyroid problem?
Oh Ahope, that's a doozy. If I was you I'd be going on and off the allergy meds like crazy, trying to establish a pattern or connection! But seriously, IF, and of course that's a big if, they are connected for you, you could be onto a cure here. I don't know what your allergy meds are. OTC ones are anti-histamines usually, I think. I really can't remember how they work, if they are anti-inflammatory or not. Check it out. And you should definitely get onto Google Scholar or PubMed and put allergy meds and TN into the search engine, see if anything comes up. Leave no stone unturned - you just might be onto something!
And I agree with your idea that the hypothyroid and c-reactive protein could well be linked to your TN, especially if there is something to your allergy meds theory. I was tested for c-reactive protein for coeliac diseases, but mine was negative. Whatever my autoimmune problem is, it's probably not the same as yours, worst luck, or I'd be out buying anti-allergy meds and trying to trigger remissions! Although I shouldn't complain, since B12 seems to be doing well for me. Ah, it's all about our guts, isn't it?
Ahope823 said:
I ask about the allergy meds because (and I’m seriously scared to type this) I ran out last week and was too lazy to get a new bottle, so was off of it for a few days. Strangely, my pain turned into a weird numbness that I’ve never felt before and then eventually petered out. I didn’t think anything of it until I got crazy allergies a couple nights later and bought and restarted the meds. I woke up the next day and the pain was back with a vengeance. I was like a madwoman trying to figure out what I did differently but the allergy meds were the only thing I could think of, so I discontinued them again after a coup,e of days of pain. The next day I had that numbness again and then today a couple hours of numb/burning and nothing.I have no idea if this is just a strange coincidence or they are related - but if allergy meds are supposed to decrease inflammation, I don’t see how stopping them would help. I’d love to know if anyone else has had a similar experience.
Btw I have no doubt that the hypothyroid (and my high c reactive protein levels) is somehow related to the TN - but no doctor seems to agree with me :/.
Even more interesting. It does make you think they must be connected.....
Jasmine said:
Thyroid problem started many years ago; TN symptoms started in September of 2013.Woman with the electric teeth said:
Interesting, Jasmine. Can I ask which came first, your TN or the thyroid problem?
