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Autoimmune Diseases For Hashimoto’s thyroiditis (underactive thyroid), Graves’ disease (overactive thyroid), Lupus, Crohn's disease, all types of arthritis, and all other autoimmune diseases. [Multiple sclerosis (MS) and Myasthenia Gravis (MG) have their own forums below.] |
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11-05-2006, 10:48 AM | #1 | ||
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Junior Member
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Long story short (if I ever can,ha!ha!)I was DXed with nodules,while being DXed with hypothryroidism several yrs before that.
It didn't take a rocket scientist to know I was hypothyroid for many years,docs only relied on blood work sooooooo I never got the right treatment,just was told my symptoms were probably due to depression. Years of struggles,etc. proved I was right they were wrong,wasted my time and mind with mis DX and wrong meds. Grrrrrrrrrrrr! I'm sure many people have the same story or similar. It's a common disease,treatable and yet millions are left to suffer,everyday becomes a struggle,no energy,just feeling physically miserable,no wonder depression occurs, duh? I am bitter right now towards my former and present doc(s) and waiting for followup bloodwork,dose of Synthroid was increased to 50mcgs from 25mcg,with hope the nodules may shrink (after my next ultrasound results will show) so far it's been since August, I feel more tired and constant feeling of PMS,even increased facial skin oiliness like during PMS. I am so sluggish,worse than before. Has anyone had this happen? Is the other alternative,Armour thyroid med. more efficient.? I will be calling endicrinologist's office to see what the tests showed. I had left a message about the med and the ongoing fatigue and no changes in other physical issues, the new doc (I wanted the one referred to in Aug bu she was booked,she has a good long reputation)left me a message saying if tests show "normal", to then take my health problems up with my GP, Grrrrrrrr! The GP is the one that sent me for the ultrasound,they sent me to the endocrinologist,she further DXes me with Hashimoto's disease,etc. and now she seems she will be blowing me off? What the heck,she hasn't tried other thyroid meds,didn't do further test, though she said she would do an aspiration of nodules,that the radio dye test isn't as good. Sorry, this turned out to be too long, but if anyone has had this happen, did your docs try new meds? Did they help? Thanks in advance, DE |
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11-05-2006, 06:19 PM | #2 | |||
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HI, Darkeyes! Sorry you've had so much grief from the doctors. We cope with enough from our various ailments, we don't need anything added from the people who are supposed to be helping us.
I'm hypothyroidic, take 137 mcg.'s of Synthroid. I had Graves' Disease as a child, was finally diagnosed at age 21 and had a partial thyroidectomy and a goiter removed. I can remember how totally miserable I was for years until the doctors finally (!!!) figured it out. Fortunately my surgeon was an outstanding expert in the field, and managed to gauge pretty well how much thyroid to leave me. It has only been in the last 10 years I've needed meds. (I'm almost 60.) But I've been on the same dosage for about the last 2 years, and apparently it's the right dosage for me. Yearly bloodwork has come back OK for the last couple of years. So while I don't have any advice for you, I can totally sympathise with what you are going through. I've also got MG, which causes extreme fatigue. Just take it one day at a time, and try to stay positive. I've only ever taken the Synthroid, and before that Levothroid. I'm not familiar with Armour thyroid med. I forget why we switched to the Synthroid. I think it may have had something to do with the dosage I needed not being available in the Levothroid. I take the name brand rather than a generic. Hugs,
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Lois . |
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11-06-2006, 01:38 AM | #3 | ||
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Junior Member
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Lois,
Thanks so much for your reply. My docs said that Synthroid is better than the the generic,generics can vary brand to brand,Synthroid keeps their dosages of standard increments, like 25mcg will always be that amount,and so on. I hope I'll get back to myself again,I don't even remember what that feels like. This endocrinologist will be the last I see here in our medical center,if I do not get treated as needed, and/or blown off, I've had it. I have seen on one of those "top doc" sites, and endocrinologist that serves Philly and NJ areas,affiliated with hospitals in Philly. His patients rate him as top doc,after their bad experiences similar to mine. Joint pain is returning in hands and arms,hair still thinning and this is the 6th year of no sex drive,I feel neuter. I'm going on 50 in Jan 2007 so I'm sure that isn't helping,you know the low hormones flat lining. Thanks for listening to me, I just feel so down,and runned down,I'm having a hard time seeing any light at the end of the tunnel with this thyroid crap. All the women in mom's family have thyroid problems,one cousin had thyroid cancer,but is fine now. I remember my dad had told me his mom had goiter,so I mean it's obvious the chances of thyroid problems for me inheriting them is pretty good. Okay I whined enough,but just wish docs would "listen" to their patients and not blow them off as depressed,neurotic, and hypochondriacs. I appreciate and thank you for listening to me. Take care, DE |
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11-06-2006, 10:10 PM | #4 | |||
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Don't talk to me about thinning hair!!! I started with thin hair, and then you add the thyroid problems on top of that, plus my age, and YIKES!!!!
I knew there was a problem with the generic thyroid meds. I've always asked my doctor to insist on the name brand, and fortunately my insurance has never made a stink about it. Come and whine any time you want, always glad to listen!! Hugs,
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Lois . |
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11-06-2006, 10:47 PM | #5 | |||
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Darkeyes, in reading back over your post, one thing jumped out at me. You mentioned "Joint pain is returning in hands and arms" Is your joint pain from the underactive thyroid? I've got quite a bit of joint pain, which I put down to carpal tunnel (wrists and hands), and arthritis (elbows and shoulders).
Should I actually be blaming the joint pain on my thyroid? Hugs,
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Lois . |
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11-07-2006, 09:42 AM | #6 | ||
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Junior Member
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I've read so much stuff and on one of those info sheets in the doc's office,joint pain was mentioned,even my GP's PA noticed that I had been tested for Lymes (a million times/overkill on doc's part) cause I get an occasional low grade fever,but no Lymes.
I've told them do not even bother with anymore Lymes disease tests,I do not see any ticks on me,nor am I out much anymore. I have a cyber friend with arthritis and Hashimotos disease,we read in several books,that RA is an autoimmune disease,like Hashimotos,diabetes,lupus, and some others. Some docs believe culprit behind or connected to RA and fibromyalgia can be hypothyroidism. At this point I know it's not carpal tunnel syndrome,my husband has that,he's a computer guy and none of the symptoms seem to fit with mine. I hate to say this but I feel it may be RA onset? I don't know anymore,but I'm really feeling down and so fatigued, it's horrible. If I do not get help from this endocrinologist I am going to see one I keep reading about on thyroid website,the site shows patient reviews. The one I see now was on the top doc list but was removed,plus she isn't the one, I got her new partner,very young and abrupt. I wanted to see the one who is the head one of the 2 but she was heavily booked at the time I need to be seen with my ultrasound results (nodules) so I may have missed out on a good one there too, maybe before driving 2 hrs. for a new one, I'll ask to see her and not the other again. ? Would I rude to? When I get a moment, I'll post/reply 2 good books I've read on thyroid disorders, oh there is a huge connection of hypothyroidism causing depression and how sadly GP's give us AD's when really we need thyroid medications. My pdoc noticed how more upbeat I was after starting thyroid meds.,that sadly I needed probably 10 yrs before getting it. Sorry,this is so long again. Thanks again, DE |
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11-07-2006, 10:48 PM | #7 | |||
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Thanks in advance for the posting of the 2 books on hypothyroidism. Mine is supposedly under good control, but I'm interested in learning everything I can about it since I've had so much trouble with my thyroid.
Hugs,
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Lois . |
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11-08-2006, 01:52 AM | #8 | ||
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Junior Member
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Here's the 2 books I was talking about,I've had them for about 5 years,but the info is still interesting and helpful.
The Thyroid Solution by Ridha Arem, M.D. Thyroid Disease The Facts 3rd edition, by R.I.S. Bayliss,KVCO,MD,FRCP and W.M.G. Tunbridge,MD,FRCP Oxford University Press I'm glad to hear you say you feel you have it under control now. I wish you continued success. I hope before this year is over,I'll get to see and feel progress within myself,but feeling pessimistic it'sw going to take getting a endocrinologist that will treat the disease according to my symptoms and not the damn numbers on blood test results. I'm seriously thinking of booking an appt. with this one I saw on the web,who had loads of great reviews and was on US top doc list. But until I get an appt. I will finish up with the doc I have right now. Take care now, DE |
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11-08-2006, 10:41 AM | #9 | ||
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Magnate
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on the hypothyroid issue. It's making me think I am verry, verry lucky that my docs over the years tested for it. Can I say POO to your docs who didn't explore it? It's such a common thing in folks over 40, +/-, and soo easy to fix. Getting the dosage right is a fine art tho, and I truly hope that the Endo. will get you on the rite track. Please note it is very common in pre-to post-menopausal women.
Like Loisba, I've been all over the Synthroid dosage map. From the 75 to the 125 mg map. Rite now I'm in-between, but shortly after PN/CIDP onset, My dosages were upped after a raging edema attack. In a long past year I'd a nodule on my thyroid for which a biopsy was taken-nothing, of course. Every year I ask my neuro about the issue, as it can be a PN cause - always a no. I sure wish I knew/or could understand, why a no. I dunno about your doc testing you for Lyme's before eliminating the thyroid issue/aspects first. Doesn't sound Kosher to me unless there have been heaps of Lyme's cases in your immediate area - get my drift? All I can say is that the Thyroid tests are far cheaper than Lymes'. Maybe anonomously send a 'thyroid fact sheet' to that doc? BTW, top docs lists are useful for starting points in finding docs, BUT, do your own homework about their backgrounds, where they practice, and their specialties [which may or may not be what you want/need]. Take it all with a grain of salt, as some docs w/great credentials and YOU may not get along or communicate well. Other than first-hand references from other patients or docs you respect in other fields [my podiatrist was a great resource-believe IT!] the finding a good doc is like playing dice or cards-luck of the roll or draw. My current and ex neuros are on top docs lists, the ex I wouldn't let my dog be treated by-if I had a dog. Keep Good Heart and have pain free moments! Don't give up, just look elsewhere, PLEASE! - j |
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11-08-2006, 12:18 PM | #10 | ||
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Junior Member
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Dahlek,
Thanks so much for your reply. The Lymes issue was in fact major concern and still is,the state I lived in before and where I live now,has had a large percentage of Lyme disease cases. Where I lived years ago,deer ticks and dog ticks were common,luckily I have short haired dogs and would be checking daily,my oldest (before I got my young one) would pick them up in our yard,we had half the yard fenced in,but was heavily wooded,I even removed a dog tick from my hip by accident thought it was towel lint. Others I would have stuck on my clothes,so I could understand the concern docs had then,and even as precaution cause the tests weren't too accurate my docs would prescribe antibiotics used for the disease. Anyway, I do not have much woods but farmer's fields behind my yard. I don't go out in those areas and I no longer volunteer at the Raptor Trust, soooo exposure to ticks for me is zero, not unless grocery stores have them, LOL!! You are so right about raves about docs can not always be realistic,I've hit on some real quacks who people raved about,one years ago a plastic surgeon who removed a huge facial cyst and didn't close it well, it got infected,etc. Anyway, you are right,one needs to research their docs. I'm on my way as we speak. Thanks so much, DE |
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