Hi, I will be completely upfront here before I start and say I'm not sure why I am posting this question in the thyroid forum, but instinctively it feels like the right place to ask, so I'm going with it!
I'll make the history bit as short as possible. I have Trigeminal neuralgia, which has to be treated with anti-convulsants. These are very strong drugs, with a lot of nasty side effects. My TN is in remission at the moment and so I came off the drugs. Unfortunately withdrawal caused a tremor which never went away. However, it's not just a tremor but an extremely charged-up feeling, like all my internal organs are vibrating. I also feel very harassed and harried, like I'm surging with adrenalin. So much so that I drop stuff and am very clumsy. The only way for me to stay calm is to sit and do nothing.
I also have SEVERE insomnia, lying awake for hours every night and then I'm unable to rise in the morning, so sleep in, and so it goes on and on in a vicious circle.
I'm aware that hyperthyroidism causes these kind of symptoms, but I actually had hypothyroidism (subclinical) while I was on the drug (probably caused by the drug) and when I came off it my thyroid figures appeared to have returned to normal. Certainly no cause for concern as far as the doc was concerned.
My question is this: could I have some form of hyperthyroidism and it NOT show in the blood tests? If so, what could be causing that? Why wouldn't it show in blood tests? Or is there any other condition that you know of – not necessarily anything to do with thyroid – that might cause these kinds of symptoms?
It feels so bad sometimes that it feels like I'm having a psychotic episode; I am SO charged up and freaked out. I am absolutely sure this isn't psychiatric because it just comes on out of nowhere, not because I'm depressed or anxious. It feels pre-existing, if you know what I mean. Anyway, if anyone has any insight to offer on this, I'd be most grateful. I really don't want to take it to my doc, because I'm sure he'll fall back on it being psychiatric, he's a hard evidence kind of man, but it's driving me mad – literally!
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Chancery
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Effects of carbamazepine on pituitary-adrenal function in healthy volunteers.
I jumped to conclusions about you being on carbamazepine. I may have remembered it wrongly.
Edit : I should have said that the internal vibration is something I suffered with on and off for many years (particularly in high stress situations), and when I eventually tested my cortisol with saliva testing it was high. I've also suffered from severe insomnia since I was about 9 or 10.
Hi Humanbean. Thanks for the link, but it takes me to : Migration movements of leucocytes, chemotaxis (author's transl). And it's in Czech. Is that right? There's no article there either, so I'm officially confused! But yes, you're quite right, I was on Carbamazepine, which started the tremors, which got worse when I came off it. I did have my Cortisol tested but it seemed perfectly normal. Of course, this was a while back. I can't see my doc testing it again though. I feel sure NHS docs don't believe in Cortisol problems!
Hi Chancery, I've edited my link - somehow or other I failed to copy the final character in the link, sorry.
From wikipedia :
Transcortin binds several steroid hormones at high rates:
Cortisol - Approximately 75% of the cortisol in circulation is bound to transcortin. (The rest is bound to serum albumin.) Cortisol is thought to be biologically active only when it is not bound to transcortin.
As far as I'm aware the blood test for cortisol measures all cortisol, however it is bound. The saliva test measures the biologically active part of cortisol only. It isn't uncommon for the results of blood and saliva tests to be different, from what I've read.
Have you ever had a 4-part saliva test done for cortisol?
I'm sure you are right about doctors not believing in cortisol problems. But there are supplements that people can buy without prescription which help with low cortisol and high cortisol. Obviously you need to know which problem you have before supplementing because low and high cortisol require different supplements.
If you searched for "How to lower cortisol" there are plenty of pages on the subject. There might be something that appeals to you without spending a penny e.g. diet-related.
That is a REALLY interesting article, Humanbean – worth waiting for, thanks! So Carbamazepine increases cortisol in the blood – yet another thing they didn’t tell me. I wonder what effect that's had. It seems too big a coincidence that I got the shakes really badly when I was coming off it. I think I need to go and do some reading on high and low cortisol and see what the symptoms are, if any.
Just as an interesting aside, the drug caused low blood sodium for me (one of its many joyful effects) and I had to be hospitalised with it. They took me off the drug completely, which you're not supposed to do, of course, and I had a sort of psychotic episode. I didn't sleep for 48 hours and couldn't stop talking. When I did finally fall asleep from exhaustion I had weird terror dreams that made me keep waking up and insisting all the doors were locked and things like that. Bad hallucinations, the works. It was effectively a psychotic episode, and I was only off the drug 24 hrs before it was restarted, but it does show you how bad the withdrawal is; I feel sure this has to be related.
It sounds terrifying. And not only that, it was completely unnecessary. If doctors knew that high dose B12 was worth trying for TN before anything more powerful was prescribed, I wonder how many people would be cured or have their condition managed much more pleasantly and effectively than it is on carbamazepine?
Absolutely, HB. It's only the innocuousness of b12 (that and my brilliant written thesis I gave my doctor on B12 - no kidding) that got me the 'vitamin' in the first place and that allows me to keep taking it. My doc thinks it's a placebo and he conveniently ignores the fact that placebo effect is known to only last weeks, or months at most, before an illness will revert. Yet mine's has kept going well beyond that. Although it can sometimes play up after two, or more commonly 3 weeks into the cycle, after I get my 4-weekly injection it will settle down again. Strangest damn placebo known to man. I've always said that if my doc had had TN he would have been chanting and waving feathers if needs be. They're good at doling out 'science' when they are not on the receiving end of ill-health.
Have you thought about doing a saliva adrenal test, to see whether your adrenals are producing cortisone in a Nice healthy pattern. The cost is about £75 and you can deal direct with the lab yourself details are under testing on the thyroid UK home page Www.thyroiduk.org.uk
Thanks Galathea, but does the test have any real value? 1) Would my doc take any results seriously and do anything? (Is there anything they can do?) And 2) What does the test prove?. Actually, I think that's an extension of question one!
Cortisol has a Circadian cycle - low at night - higher in the morning. When you are producing too much at all times you can experience the symptoms you describe - hence people have been trying to help with suggestions for testing. When your Adrenals keep over producing they eventually can burn out - which is certainly not much fun.
Just one of many articles on the web about adrenals and the role they play. Mostly self help to - as is the case with so much of medicine today. References at the bottom.
Thanks for those, Marz. That gives me a good place to start.
Never think I don't respect or listen to your opinions on things. I value them highly, always. I think you're an excellent role model for taking on your own health very proactively. I just have to find my way to the real issues underlying my problems. Without your and other contributors' input that would be a much slower, lonelier job! X
It's only since I was diagnosed here in Crete in 2005 with Hashimotos - that lights began to shine in so many dark corners of books and websites. It was like doing the most difficult jigsaw puzzle in the world I had many of the outside pieces but..... I know if I had not been retired I would have continued as I had always done - doing the best I could and just putting up with stuff.
I think the Greek system has helped too - as they are very open and you are free to go wherever to see Docs/Specialists. Of course the Pharmacies too as you can buy most things without a prescription. I just find everyone so helpful and open so I have happily taken responsibility for my health with guidance from people who are prepared to share.
The people that helped me in the beginning - Dr Barry Durrant-Peatfield. I saw him privately in the UK and had to keep detailed records which I sent to him every 6 weeks. He would write back with tweaks. That system taught me to monitor my health and take control - excellent. If I want to call him or his team it is absolutely no problem. I have not needed to do so since going onto T3 only - with his suggestions at that time.
This Forum also sorted me out with VitD and B12. I am trying to increase my T3 at the moment as it is low in range. So its not all plain sailing. Physio and Osteopathic treatments for a back damaged by LOW B12 - are also in the mix. I will be 70 this year - so am definitely going to enjoy this year and celebrate in style at any given opportunity.
So keep on reading and when something resonates - go for it
If you can find a local 8 week mindfulness course that may help you cope with the symptoms until you can get to the root of them. Practiced regularly ito is proven to help lower fight of flight responses and that may be why sitting still helps.
I am also wondering if B12 plays a part in this. Do you know what your levels are?
My B12 should be brilliant, lb, I get 4-weekly injections for my TN (that's what put it into remission). I have to admit the idea of mindfulness, yoga, meditation etc fills me with horror. Age has made me very short-tempered with these things. I don't know why, because I suspect I really need them. I think that's part of the problem!
When you stopped your thyroid treatment - it is quite possible you added to the stress burden on your adrenals. The Test for cortisol offered by the NHS is an early morning blood test and does not reveal the full story - so the 24 hour Saliva test suggested above is the way forward.
I would also agree that your B12 may be low. Are you supplementing ?
Hi Marz. Yes, I wondered if coming off the Carbamazepine had maybe pushed the thyroid it was slowing down into mild hyperthyroidism. And it is possible that coming off Levothyroxine played a part too, although I was on a low dose for a very short time, so you wouldn't think so. But you never know with meds.
I did do the Cortisol test a good while back but it came up normal. I do wonder sometimes if Carbamazepine has just caused severe anxiety for so long (it was particularly bad during withdrawal) that my body's just got screwed up somehow. However, that doesn't help me much, because how the hell do I fix it?
I have had this, inner vibrating. I have hashimotos and since getting that, i have all sorts of terrible sensations and insomnia severely too. I have low cortisol .
It's horrible, isn't it, Faith? To me it always feels like watching the clear panel in my kettle, as if my insides are just coming up the boil. When it gets really bad, I find my brain goes into something like panic mode and gets very frantic. I feel sure something is pumping adrenalin but I have no idea why or how.
I had fortunately only 1 tri geminal neuralgia flare up just before I started B12 injections and it's now completely gone away. So painful. I've also experienced the strange body vibrations in the past and I had no idea what caused it but it was a very weird worrying sensation. My Adrenal function has been very low in the past with low cortisol- now much improved since I started natural dedicated thyroid several years ago. And yes thyroid blood tests cannot be relied upon to make a clear diagnosis in every case- it's much more complicated than just looking at the pituitary hormone tsh test result! So reading the above posts with all the good advice I'd agree, get B12 and salivary cortisol tested. Low B12 can cause all sorts of strange nerve pain and sensations. Mine included numb patches on leg, tingling in fingers, nerve pain in my armpit, numb face and trigeminal nerve pain - all cleared up / much improved following self administered injections of B12. Loads of very experienced people on here and excellent advice - this forum has helped me so much. All the best x
Yes, Hoxo, it's big ongoing concern of mine, wondering if there is other neurological damage, other than my TN lurking around waiting to pop up! I get 4-weekly B12 injections, which manage it quite well, so I don't think it's that. Sometimes I get paranoid and imagine it's the start of MS. That doesn't help my anxiety any!
Hi Chancery. glad you solved the hypo question, how long ago did you come off the drug? And did the Sibo diet you were trying a while ago help at all?
Hi Aspmama! Yes, it looks like Carbamazepine was the hypothyroidism culprit, and no, the SIBO diet didn't help the IBS any. It seems to have improved a little on its own recently, although it likes to play up every few days just to keep me on my toes. Either that or the probiotics I take have slowly but surely done good work!
Could you get hold of the results of your recent thyroid blood check? If you post them here someone will have a look and see whether you still look hypothyroid. The ranges used by doctors to interpret thyroid results are very wide in this country so you may still experience symptoms even when your results are declared normal.
Hi Eeng. Yes I have the most recent test results (January this year). They are TSH 3.6 (range 0.2 - 4.5) and Free T4 12 (range 9-21). Previously they'd been 5.1 and 10 respectively, so as you can see they look more normal now.
Normal is just an opinion - they look Hypo to me ! Remember T4 is a storage hormone - the TSH will have lowered as you were taking T4. With a FT4 that low you can assume your FT3 will also be low.
How long did you stop taking the T4 before these tests ? T4 can hang around in the system for around 6/8 weeks.....
Have you had your thyroid anti-bodies tested ? - Sorry cannot remember ! If not then they are Anti-TPO and Anti-Tg.
I honestly can't remember, Marz. I'd need to work it out. , but I suspect it might have ben longer than 8 weeks - more like 3 months or more. Yes, they tested my antibodies - not all of them, only the NHS ones(!), but they were all aok. I did suggest to my doc that my test results still looked a little off 'normal', but he wasn't having it!
Your Doc has always wanted to keep you within the Guidelines. He is thinking only of himself and his job I'm afraid. Getting patients well seems to be the last thing on his mind. I would start self treating and finding your own journey to wellness.
I'm sorry you are not able to take things into your own hands..... all I can suggest is that you read up on adrenals and how they are affected by a low performing thyroid - which yours is - and see what you can do for yourself.
Also check out Low T3 syndrome - have a feeling yours will be on the floor with such a low T4.
I actually agree with you, Marz, I've come to loathe the man, and he's a perfectly nice genial, if rigid, man, but I hate the sight of him – such is the power of being perpetually disbelieved. I actually don't buy into his beliefs in general; I think his rigidity actually makes him stupid. Intelligence demands a certain amount of imagination and he has none. The real reason I don't go off down the self-treating route is simply because I don't actually know what's going on. I don't want to be as guilty of mistreating myself as they are. Unfortunately they are not interested in finding out the reasons for things; I am. I don't believe in plastering over the cracks with drugs. I don't want to. But when you've got something wrong with your brain/gut that no-one even understands, let alone has a cure for, it's tough to put two and two together. And let's be honest, so many of the things that go with low thyroid go with other conditions. It makes it hard to go in the right direction.
I self-treat for low Vitamin D in winter and I'm currently trying various treatments for my 'overheating'. So far sage has worked quite well and red clover not at all. I had a salutatory experience with the dangers of self-treating recently when I tried to help my oesophagitis/IBS with acid supplementation. As you know, everybody but everybody in the alternative medicine world extols the 'you don't have enough stomach acid' argument, so as I was in so much pain and getting tested by the NHS would be so difficult and so time-consuming I thought I'd try the Betaine HCL route. I bought one with digestive enzymes.
What a nightmare. The acid, unsurprisingly, burnt my oesophagus and within 3 days it was four times worse than it had been. I stopped them again and it took about 3 weeks to get back to where I'd been, never mind get better. So no, it wasn't low stomach acid that was causing my problems, and no, taking Betaine HCL is NOT a good idea if you suffer from oesophagitis.
I'm afraid I believe alternative medicine has just as many halfwits and charlatans as real doctoring does, so I do everything very cautiously with lots of research. But I absolutely take on board this could be a thyroid issue; I always have. Trouble is, it could also be a long-term stress issue, or an issue with the drugs I used to be on, or some damage caused by the disease of/operation on my gallbladder, or years of an eating disorder. Any one of those could be the culprit and I try to inch slowly forwards with it, putting things together and coming up with five as often as I come up with four. But yes, I am doing some reading on Cortisol and the adrenals to see what I can turn up – onwards and upwards! X
I like faith , have hashimotos (autoimmune thyroiditis) I wasn't diagnosed for years because my thyroid blood tests repeatedly came back normal so thyroid disease was dismissed . They are renowned for being unreliable but GP s doctors even endocrinoigists believe they are the gold standard for diagnosis !! I had internal tremors exactly how you describe , relentless for years no one could see them but I could feel them . I also had a thudding heart and palpitations ( amongst many other awful symptoms) I had terrible insomnia for years drove me crazy I used to lie awake listening to my pounding heart all I wanted was to sleep to have relief from the symptoms . Years down the line I was eventually prescribed amitripyline , 2/3 at night and I slept right through till morning . I know the long list of side effects is a bit daunting and many people don't do well on it but for me it works well and no side effects . I was eventually given thyroxine even tho my bloods were still normal , amazing I was 50/60% better but the inner tremors and pounding heart continued . I wanted an end to these tremors ( I was said to be neurotic) doctors said its all in my head hmmmm ! This is when I started to self medicate with help from this forum, I was always refused T3 and NDT endos will not in my experience prescribe it , for what ever reason !!! The hormone of choice for me was thyrogold ( dr John Lowe . U.S) I have been sending for it and taking it for almost a year now and have no tremor or pounding heart and no other symptoms of hypothyroidism . My advice yes go down the thyroid route . With hashimotos you can go through periods of hyper followed by periods of hypo , hope this helps jay
Thanks Jay, that was very interesting. I did kind of wonder if there was maybe a pendulum effect going on, going from Hypo to hyper because the drugs had been removed, but I stopped them a good while ago - it should have settled down by now. I know blood tests are commonly considered unreliable for hypo conditions but I 'm not sure if they are considered unreliable for hyperthyroidism?
Strange you should have been given Amitriptyline, that's in my list of things to try. It's often used for TN and nerve pain too, so I wondered if trying that might show if it is an anxiety based problem. . I'm not sure I'd be keen to take it long term because of side effects, but it might help establish what's going on.
Oh yes, RFU, you are NOT wrong there! The drugs were a life-saver, and I appreciated them to the hilt, but they did some terrible damage to me. I suspect that it might be what I am looking at now. I just hope it's not permanent damage. I live in dread of the return of my TN because I don't know how I can go back to those drugs, and I don't know how I'd cope without them. It's enough to make you anxious all by itself!
I meant to say my mum had trigeminal neuralgia she would jump and shout out said it felt like biting broken glass she was prescribed I think , tegretol ?? Started on a low dose side effect was feeling sickly but that passed she was fine for a few years then had it upped , same side effect but again it passed and she lived without pain till she passed aged 95 . Just to add the amitriptylin seems to be prescribed for fibro pain but people say it just makes them more tired I just use it at bedtime and sleep right through the night and wake up clear headed and no nasty side effects I know the list is a bit off putting but maybe worth a try ? I would still say look further into thyroid a diagnosis of fibro is a diagnosis of elimination and how do we know if all the right tests have been done ?
Yes, I was on Tegretol. I had the nausea, shakes, EXTREME drowsiness, but I never really got free of pain. The electric shocks, yes, but not the burning low grade pain, not even when it was combined with other anti-convulsants. Nice to know your mother lived to 95 though, that cheers me up! Yes, drowsiness seems to be Amitryptiline's biggest problem, although I can't say at the moment I feel l'd care. I'd be thrilled to get some consistent sleep.
I wouldn't disagree with you there either, RFU. I saw 2 neurologists while my TN was active and they were both appalling. I actually made a formal complaint about the first one - which did zero good. When I asked about surgery she laughed at me!
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Any idea what may be happening?
Un known cause of tremors linked to?
Can anyone give me an idea of what these results might mean please?
How is it possible? Does anyone have any ideas?
Any ideas as to whats going on? - T3 only
