Hi, I'm one of the less than 10% who don't have Hashimoto's. I've just started a trial period of Levothyroxine and I've been looking into other causes of hypothyroidism. So far I've found nothing that fits my medical history/symptoms - at all. I'm beginning to feel like a freak of nature. The only thing I've found that MIGHT fit - if you close one eye and squint - is sarcoidosis.
I also have an inexplicable and steadily worsening rash, which sarcoidosis seems to present with sometimes, so I wondered - anyone on here been diagnosed with sarcoidosis, or had it implicated in their thyroid problems? Did you have a rash? As ever, any insights most gratefully received.....
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Chancery
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Sorry - me again. Yes I almost had that diagnosis when I was 27 - 42 years ago. It is part of the TB family I believe. Anyway - my diagnosis was ileo-caecal TB eventually....
I didn't have any rashes - just enough complications to land me in hospital for almost six months....
Very interesting, Marz. I saw "tuberculin" mentioned a couple of times in my reading and wondered if it was related to TB. I was fine after my BCG, as I recall, other than it itching like hell!
...the itching could be something. I think my ileo-caecal TB was linked to my BCG vaccination. I was fine until then - having been brought up on a dairy farm the six needle punch did not show I had been in contact with TB and so I had the jab. It has been all downhill until recently.....we have to look at history methinks. Hell - what do I know ?
That is a really interesting Vit D article, Marz, thanks. It does seem to back up the work of the Marshall Protocol, which also claims that low Vit D is a sign of chronic illness and giving supplements just makes it worse. It might just explain why I have developed this 'allergic' rash, and the recent(ish) development of very bad fluid retention. My Vit D might be making things worse, not better. Well, if I can't take antihistamines, I can always try giving up the Vit D for a while and see if that makes a difference...
Chancery, Marz recently posted an article discussing vitD levels and guidance recommendations. There was discussion saying vitamin D supplementation is contraindicated in people with sarcoidosis.
Yes, I've seen that elsewhere. There's a thing called the Marshall Protocol, which is about how bad for you Vitamin D is (written by an engineer who himself has Sarcoidosis). I didn't think it could refer to me in any way, but apparently, according to Mr Marshall, people often have deficient Vit D, as I did, because of this (he explained the mechanism, which did sound plausible, I admit). More alarmingly, I take Vit D every day, and it's not been measured since I started, but hey, sarcoidosis is a stretch, as usual, so I'm probably fine. On the other hand, maybe the rash started about the time I started taking it....
Chancery, well it's possible to have an allergy to vitD supplements without having Sarcoidosis. Easy enough to stop supplementing for a few weeks to see whether your rash improves. You should be able to catch a few rays an get natural vitD even in northest Scotland over the next few weeks.
The Marshall Protocol is quite radical and has made some people very ill but has helped others. Not sure I agree with the premise which seems to be the worse it makes you feel the better its working.
Ah, punishment as a scourging of illness. The Victorians used to like that one! Certainly Marshall advocating everyone stays out the sun permanently is a hard one to swallow, as is taking antibiotics on a regular basis.
I didn't realise the Vit D could be allergic all on its own though. That's definitely something else to try then - thanks!
to have the Marshall Vit D dysfunction , you will have a TH-1 response which means inflammation in the body. This can be shown in a number of diseases in which Sarcoidosis is one. Hashimotos (which I know you don't have but many on here do) is another.
Yeah, I've seen this Julie, thanks. I don't like Dr Mercola, but I have to agree with him on the insanity of taking constant antibiotics and staying out of the sun - that just has no logic at all.
i also don't like him! but i know he's right about a number of things. don't trust him generally, but a friend in the health bus. insists he knows what he's talking about on a number of issues, too. never know what to think about him but don't trust that a) he puts his face and name all over everything and b) sells supplements... maybe that's unfair, of course. out of curiosity, why don't you like him?
Hah! Because he sells supplements, and he belongs firmly to the school of snake oil salesman that America so loves. I think they have a long history of tent preachers and he's one of them.
I'm reading a book just now called The Gluten Lie, which is all about health scares and how they operate like a religion, where we, the sick people, are all acolytes of some wonder cure or another and they, the doctors, are our priests and we have unthinking faith in them. If you go onto any health forum, even this one, you will see people swearing blind allegiance to things that make no sense and that have no science to back them up. If you challenge the thinking behind them they will get very angry with you, just like any religious argument.
Dr Mercola definitely belongs to the cult of guru-worship, and he's selling it so hard it's indecent. Besides, he looks like a used car salesman!
totally agree on all fronts! i love the studies that come out and show that people who take multivitamins have shorter lives. and think often of the 80s, when we were taught to eat no fat, no salt, tons of carbs, no mixing of carbs and proteins, and any number of other bits of garbage... also of that scene in 'sleeper' where woody allen learns that red meat and cigarettes are actually healthy
Oh yes, you don't have to scratch down very deep to find healthy eating guidelines that are actually destructive, never mind not healthy. John Harvey Kellogg, of Kellogg's cornflakes fame, believed that sugar caused overheating of the blood and it led women to masturbate (you'll note, women; men were allowed, presumably). And you can bet he had loads of women in his sanatorium blithely believing, and following, every word that fell from his lips....
oy! the whole history of hysteria reads like this, too . . . i'm absolutely convinced that thyroid treatment is as bad as it is because doctors still tend to think that women (who suffer from it the most) are generally a bit 'hysterical.'
I know. It's one of (some? most?) men's more attractive traits: they like to hold forth on women's bodies and what they should do with them. The fact that they don't have the first clue about them doesn't seem to stop them. Rather than admit to their ignorance, they prefer to turn it back on the women and infer, or outright state, that they are mad, crazed or just generally neurotic and somehow inferior because their physiology isn't male. Medicine has never quite shaken this archaism off, and produces the odd effect nowadays of even some female doctors treating women patients like male doctors would. Very bizarre and schizoid!
Yes you are being unfair to Mercola. Of course he is not always right, but usually he is. Mercola is a constant target of the mainstream medical mafia, so he must be doing something right.
Just wondering how you know for sure you don't have Hashi's. I was also always told that I don't have it, because my antibodies were low in the range--but found out this year via ultrasound that my thyroid is mostly gone--due what to could only, my doctor said, be years of Hashimoto's.
Oops, forgot to mention that persistent rashes can be a Hashi's symptom: hypothyroidmom.com/chronic-... (though I get that you're saying you don't have Hashi's !) Either way, hope you feel better soon!
Oh dear, Julie, how did you restrain yourself from punching his lights out, or suing?
My TPO was found to be 3.5, just about as low as you can go without being zero. My doc wouldn't test anything else, so I suppose the short answer is I can't be absolutely sure. But for some reason, probably because it's a mare's nest, my doc is allergic to the word autoimmune and won't countenance that I may have an autoimmune problem, so I've stopped pursuing it. I have had a lot of antibody tests, for various things, and they're always negative; I think that's made me lose faith in it as an idea too.
On paper, at any rate, I seem to be the least autoimmune person on the planet.
wow - i get it! i only mention this because i also have *no* markers for autoimmunity. zero. but clearly have had a lifetime of hashi's (based on my symptoms and now mostly gone thyroid). whatever it is, i hope you get to the bottom of it. maybe you already know this, but there are 2 recommended thyroid antibody tests: anti-tpo and TgAb, and apparently people can be normal on one and high on the other, so it's crucial to get both. that said, both of those have always been normal for me!
your doctor sounds so frustrating. maybe you can order the other test on your own, if you're inclined?
about wanting to punch my doctor: the one who finally diagnosed me with hashi's is wonderful. no punching required but i have 3 decades worth of doctors i would truly like to punch. when i'm feeling uncharitable, i wish them all debilitating illnesses and doctors who repeatedly tell them that they're healthy... but that's not very nice of me...
Not nice maybe, but more than understandable, and anyway, what's the harm in wishing for a little karma?! I think suffering would be good for their souls and maybe teach them something about empathy.
And yes, I've heard from several people about being low in one antibody but really high in another. I know someone on here had exactly that problem (I can't remember who it was now, though). She had zero TPO chappies but through the roof TgAb. I remember it was something ludicrous like none of one and 646 of the other! But I did ask my doc if we should test for the others and he said, and I quote "there's no point". Easy for him to say; he's not the one struggling to make sense of health problems!
But yes, you're right, I could order the test/s myself and it may well be worth doing if the Levo works for me. At the moment though even that is in doubt, because despite stopping the antihistamines I was given at the same time, I still have the migraines I've been getting, which I assumed they were causing. I am currently praying to God, Jesus, Elvis and the Buddha that they are not being caused by thryroxine!
your doctor's 'no point' comment: ARRRGH. they're such idiots when it comes to this stuff, and it's so easy to say there's no point when he's not the one desperate to feel better! argh again.
personally, i did terribly on levo both times i tried couldn't get right on t4, t3, combinations, combinations of ndt and t3 and t4--now doing way better with only NDT but still have a ways to go!
Really? That's very interesting. What was the problem with Levo for you? I know I've seen lots of people on here complaining they couldn't take to it, but I am ashamed to say I paid no attention. Looks like God is giving me a kick up the proverbial, because now it seems to be my turn!
I must confess I'm dreading it not working for me, because the NHS doesn't seem to offer any alternative at all. Did you get anything as an alternative from your doc? (Assuming you were on NHS!)
my prescriptions have all been from the states or from germany, sorry to say. the levo in even a small dose seems to make my hair shed even more aggressively, and it also gives me laryngitis. weird. both times i tried it for any kind of extended period, 6 years apart, i got increasing hoarseness and then lost my voice, and it took a few months being off the med for the voice to return to normal. i don't think it's some weird hashi's coincidence that i lost my voice both times, so many years apart, and got it back after a period of being off the stuff. beyond that, it just makes me feel bad and weird in an all-over kind of way--i just get more uncomfortable in my body, tenser--wish i could explain it better than that. the first time i went on it, i got super anxious and my heart went nuts, even on a smallish dose. that said, some people do great on t4, and you might be one of those--it's totally individual!
ps : no guilt allowed over not paying attention to everybody else's myriad symptoms! life is too short to kick yourself over that one!
Yeah, I saw in the packet insert that it causes hair loss in children. See? that proves how youthful you are! And I can see laryngitis - after all, your thyroid is in your throat. Doesn't seem so strange to me. And they list heart palpitations too in the side effects. Looks like you're just REALLY sensitive to the stuff; so sensitive you've even picked up the kids' side effects!
You've no idea how much that cheers me up - it's usually me who is having the ridiculous overreactions (that doctors don't believe in). I feel better about having migraines now. At least I know I'm not the only freak of nature!
ha! you are definitely not alone! i've had so many doctors tell me they've never had any patients get the side effects i get from nearly *everything* i'm prescribed (even when it turns out that they're listed on the package insert!). and i won't even begin to talk about my reactions to supplements. one doc said to me, 'you have a very peculiar physiology.' thanks. not really helpful when you're asking for help about how to fix problems induced by the drugs they've given you! i just basically try to avoid everything entirely now (minus the thyroid meds and a few key supplements that i know i need and can tolerate), after having had so many bad experiences with doctors' prescriptions *and* standard Stop The Thyroid Madness and other supplement recommendations... (ps, hugs from a fellow migraine sufferer!)
ps, i always get palps now when i increase my dose, but they only last for a few days--which i can totally handle. much better than the constant heart palps of life on t3 only or any synthetic t4. also, just to add another weird thing in here: thyroid people commonly have mitral valve prolapse, but my ultrasound instead showed tricuspid valve prolapse and regurgitation, which apparently is stupidly rare. i can't even get the right heart issue!
Damn, I'm actually quite jealous (I know, I know, what can I say? I have a sad life.) I kind of wanted to feel palpitations and get all excited and have a speeded up metabolism. No such luck. Instead I've been crushed by nauseous headaches and complete exhaustion. How thyroid supplement can make you feel MORE tired, I do not know, but it has. Every day I am passing out on the sofa (more like Camille than I thought!). I'm like an eighty year old in her twilight home.
And I know what you mean about getting your heart problems the wrong way round - I do the same thing myself. Or at least my body does, just to provoke me. Whatever a med is supposed to do, it does the opposite in me. There is a time and place to be a quirky individual; the doctor's surgery ain't it! But like I say, I reckon a lot more of us do it than the docs let on. I think they just like to push the burden of our illnesses not playing ball back onto us!
Oh, been there, got the T shirt, Julie. I suspect lots of us have; doctors just don't let on about it. I remember when I got a six week migraine from Lamotrigine (an anticonvulsant) and my neurologist saying "Oh well, that's odd" and she was actually put out because she, as the great prescriber, had given me a drug that made me REALLY ill (second worst migraines I ever had, but worse in one way, because it went on so long without respite). Ironically, Lamotrigine is used to treat migraines. But for revenge, she put on my file that I suffered from migraines. She had zero proof of this; all she had proof of was that Lamotrigine gave me them, but that damn 'analysis' has followed me ever since. Every single hospital visit it is duly written down as if I spend all my days lying on a sofa like Camille.
In fact, I only get migraines from drugs usually (or things like caffeine, which let's face it IS a drug), but hey, docs are never going to admit it might be that. Instead it's my fault - genetically weak, don't you know?
Yep, can't be the doc's fault! Ironically, I never blamed the doc - why would I? It was just something she tried - but I do get P'd off at this juvenile dance round their egos all the time.
Further irony - I ended up putting a formal complaint in about her anyway - nothing to do with the drugs, she was just such a narcissistic buffoon. So by trying to protect her image all the time she ended up annoying me so much I complained and tarnished her 'image' anyway. Karma indeed.
Lovely to hear from you Chancery, as ever digging away... but I'm confused, the last post I read said that you no longer had hypo? It came back?
Hi there, Asp! No, I just had a 'normal' blood test a while back, but I thought it was suspect (I'd come off Carbamazepine in hospital 3 days beforehand) so I asked the doc if we could retest it. We did, and lo and behold, right back where it was six months ago at hypothyroid, which means, as far as I'm concerned, that the 'normal' test result was a fluke. So I bit the bullet and asked for a trial run of thyroid meds.
But how are you? Any breakthroughs or brilliant discoveries on the research front?
What you may find helpful is the functional medicine approach..i believe i have sent you to Dr. Hymans website? It doesn't matter which autoimmune disease you have, they feel that the problem is with the Gut and once the gut is healed and food sensitivities are addressed, the disease can go into remission. Food sensitivities and food chemicals, what we are exposed to, cause endocrine disruption and chronic inflammation..very common! Mainstream medicine does nothing to address the underlying immune system dysfunction, they throw all kinds of meds at you and people get more diseases and side effects from meds.
Amen to that, Faith. I was just prescribed antihistamines for this evil rash and I only managed three doses. By day two I had a steadily worsening migraine and was so tired I was falling asleep after breakfast - no exaggeration, actually asleep sitting on the couch.
I imagine I would have been fine if it was just 'normal' me that had taken it, but because I'm on Carbamazepine I get this nonsense. I stopped the antihistamine last night and lay awake till twenty to five, watching hallucinogenic geometric patterns on the ceiling and feeling as if I was having a psychotic episode, and all this is from removing a hardly in my system antihistamine. Carbamazepine does not play well with others!
P.S. Yes, you did refer me previously to Dr Hyman's site, thanks!
Hi Epictetus. Many thanks for the link to the Google book. Most interesting, and nice that it's free access - makes a change!
I'm going to ask my doc to retest my Vit D and calcium to see if they have gone up/down/stayed the same, and see if I can glean anything from it. I wouldn't be able to have any fancy testing, I'm afraid, since it's on the NHS so it will be the bog standard one, but hopefully I'll get an idea if anything is amiss.
I think sarcoidosis is a flimsy link for me though. I had a chest X-ray (relatively) recently and there were no granulomas spotted then. On the other hand, of course, I may only have it in my skin and/or brain, so I suppose anything is possible, but I do think it unlikely. I just find this rash very aggressive, and to be getting worse after 14 months kind of smacks of yelling to me - as in my body is breaking down under something - I just don't know what.
The whole Th1/Th2 thing is new to me, but it doesn't seem very useful for the layman. I should think only specialists could make use of that kind of testing. But even if they do, it seems to not be definitive, with lots of crossover, so I can't see any practical application of it.
But thanks for the re-birthday wishes. I shall hang onto them regardless. Any excuse for cake!
That's a VERY interesting article, Epictetus, thanks. I found it particularly interesting that their mice were infected with H. Pylori. I had that, and may have it still. I was treated for it twice, but after gallstones made their presence felt I was never retested so it may well have hung on, despite having enough antibiotics to cure a small third world country pumped through me.
Yes, gallstones do come in different compositions. Latterly in my illness, my gallbladder withered and died and the stones calcified. I believe that's 'normal' but interestingly, again, sarcoidosis causes over calcification in the body (kidney stones, for example) so that does make you wonder!
I have not slept much in 5 years, since my thyroid quit working. I have Migraines and feel terrible. I get the Visual type too. I know about the feeling of Halucinating and its frightening.
My point is, too, that if you look into Functional Med. approach and get well from it, i am sure the medical condition, that you take that medicine for, could go away. It is Autoimmune Isn't it or from an injury..sorry.
It's trigeminal neuralgia, Faith, and the jury is out on what causes it. It's incurable and degenerative so no-one knows much and there's not a lot to be done for it, other than dope up with anticonvulsants. It's not autoimmune, no, and if it was caused by an injury it would be a very old one, aeons ago, I imagine. I doubt if even functional medicine could help - it's a bit too physical for that, and being buried in the brain makes it harder to treat, or monitor.
But you get migraines too? You poor thing; I literally know how you feel. Mine always cause stiff necks and facial pain (sinuses). When they're bad I can't turn my head and it always feels as if my eyeballs are lined with sandpaper. This weather just now seems to be playing a part. It's so muggy it's making my sinuses block during the night. If I'm lucky, I get up and start sneezing like a cat with pepper up its nose. That usually clears it, even although I'm sniffling and snorting all day. But if I'm unlucky, like today, the sinuses stay stubbornly blocked and it turns into a migraine. To be honest, I'm a bit worried that I've got one again today, since I've stopped the antihistamines. I'm now worried that this is a reaction to Levo. Let's pray to God not....
I am sure you are under medicated and have autoimmune issues, of some sort. Just because "they " say, its not autoimmune doesn't mean its true. Any time the body attacks itself..its autoimmune. Degenerating nerves and discs, alzheimers, MS etc..all AI. Have you had an MRI to see if you have a Tumor causing this or been tested for MS? Mayo clinic website says TN is associated with those issues.
Neurological pain, fibromyalgia pain, neuropathies, can be tied to hypothyroidism, which includes not properly treated hypo, which i believe yours isn't Pain is tied to low t3 levels. Have you had a free t3 test?
Do you know how many people are diagnosed with a disease, that miraculously disappears, once the thyroid meds are right? How many get off statins and their congestive heart failure is gone? I would get your own thyroid labs and believe that it could be gone or nearly gone, once you address the issues that we have discussed.
Ah, that would be great, Faith, if it was true. Let's hope, eh? At the moment though I'd be happy if I could just settle these daily migraines I'm having. Now that the antihistamines are gone, the only thing I have left is the new Levo. I am really concerned that that's what's causing this problem. Just had a look at the packet insert tonight and it cited "headache" as one of the possible side effects - this doesn't reassure me! But maybe it settles down?
Anyway, I'm going to put a new post up just now and see if headaches are common. It also seems to be giving me insomnia, tiredness and spots! Can you believe it, spots at my age. I never even had spots when I was a teenager!
P.S. Sorry, forgot to say, yes I had an MRI right back at the start, but other than some "white matter" there was nothing unusual on it. That said, they miss the compressed nerves that supposedly cause TN all the time. I don't think MRIs are quite as shiny bright as they'd have us believe!
It is possible to heal this, through functional medicine, i am sure.
Yes!!! I have episodes of terrible, painful acne. When i first went hypo, my entire face, back, chest and sides, upper arms, broke out in sore pimples. It was explained to me that we detox thru the skin. I feel toxic! When hypo, the kidneys and liver, heart too, don't work like they should.
Headaches and migraines are common too. Both common to autoimmune thyroid too.
Poor you, Faith. I'm glad thyroid meds sorted that for you (I hope they did?) I've been lucky; I've never been cursed with acne or anything like it. At least one problem I don't have!
Don't worry too much about your gallstone. You can live your entire life with one and stay asymptomatic. If you have one big one you are much better off; they are far less likely to play up. It's the little ones, like sand and gravel (like I had) that are worst. They are very fond of going for a walk and slip out into bile ducts, causing the archetypal pain of a gallbladder attack. Not something you want to experience!
Gallstones are generally caused by a problem with lipogenesis, rather than inflammation, i.e. your body isn't processing cholesterol well. Although you can also have a sluggish gallbladder or sphincter of Oddi, which may also aggravate the problem. Lipogenesis problems could be a dietary issue though, i.e. you are eating too many carbs (or the wrong kinds of carbs) or you could have some other insulin (or glucagon) related problem.
Ah, our bodies are nothing if not complex. That's what makes doctoring and diagnosis so damn difficult!
P.S. Plus, of course, gallstones and thyroid problems seem to go hand in hand.
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but i have 3 decades worth of doctors i would truly like to punch. when i'm feeling uncharitable, i wish them all debilitating illnesses and doctors who repeatedly tell them that they're healthy... but that's not very nice of me...
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