Hashimoto's thyroiditis,any one?
 

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:confused:

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,

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

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!!!! :eek:
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,

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,

hypothyroidism/joint pain
 

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

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,

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

Darkeyes, I too, have been all over the map...
 

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

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

I was diagnosed hypothyroid almost twenty years ago. My sister was diagnosed first, which prompted my other sister and me to be tested. We were all diagnosed within about six months of each other. My dad has it, too, and 80% of his side of the family :eek: ...aunts, uncles, cousins. I was pretty much a lump of clay when I was diagnosed, and my brain fog had gotten very bad, but I responded very well to Synthroid. Still, I don't feel I have normal energy levels, but that is something I have come to accept.

About ten years later, I started having all sorts of problems...neurological and more. I was thinking perhaps it was some sort of thyroid problem flare. Several years and eight specialists later, one finally uncovered my B12 deficiency. It is presumed I have another autoimmune disease, pernicious anemia (causes B12 deficiency due to lack of intrinsic factor needed to process B12), although the antibody tests associated with PA were negative for me as they can be up to 25% of the time.

There is only one autoimmune disease with known cause and that is Celiac Disease, caused by an abnormal immune system response to gluten (found in wheat, barley, rye), and the only treatment is a strict gluten free diet. There is growing evidence that gluten (and casein/cow's milk) sensitivity may play a role in other autoimmune disease as well. In fact, there are some cases where a gluten free diet begun very early in the course of autoimmune thyroid disease... has actually reduced thyroid antibodies back to normal. This is not the norm, but the idea is that early identification and treatment of gluten sensitivity might prevent other autoimmune disease. There are sporadic reports of other autoimmune disease resolving or improving on a gluten free diet (like RA, Lupus, MS). The research is early, but quite interesting. There is an enzyme called zonulin which regulates the "tight junctions" in the intestinal wall, and they have found people with celiac disease, diabetes, MS...all have too much zonulin. They think perhaps the 'leaky gut' results in food sensitivity because the food proteins leak out to where they don't belong, causing an abnormal immune response to mount.

You might find The Gluten File an interesting read. Just browse the right bar for information that may pertain to you or interest you. People with autoimmune thyroid disease are at higher risk of gluten sensitivity/celiac disease (and they think the gluten sensitivity probably comes first, but gets diagnosed last)~ and you will find a page devoted to studies about thyroid disease/ celiac disease. I have a page about zonulin in The Gluten File, too.

Cara

Thanks for the reply. :)
I read in a book by Dr. Rhida Arem, who is a professor (Baylor,in TX) and endicrinologyst, that stated, diabetes, lupus, hashimoto's, and celiac are all autoimmune diseases. I read it in one of those free handouts found in my doc's waiting room.
Oh, and I believe on one of the thyroid websites, can't remember which one, I've been googling so much, I read that.
Whatever, I know any of this is horrible to live with.
I hope you feeling well, and if you can share anymore thyroid info. I'd appreciate it.
Thanks so much,
DE

Do you know about About.com thyroid forum? I guess if you found a thyroid forum..this would be the one.
http://thyroid.about.com/blthyroid.htm

The only book I ever read on thyroid disease was Solved: The Riddle of Illness by Stephen Langer. I thought it was very good, but that was almost twenty years ago!! I don't know if he's done revisions, etc, so some info could possibly be out of date.

http://www.amazon.com/Solved-Illness...e=UTF8&s=books

Cara

Thanks for the info., yes, I have gone to thyroid sites, they are very interesting, I'm finally going to see the endocrinologist that I originally wanted to see, but at the time she was booked, so they booked me with a new one that works with her. She was alright, but occupied too much with her personal life issues, so finally the one I wanted to see, that 3 docs referred me to, is available.
I had to be persistant and tell the receptionist I wanted follow up with her, I didn't care if the other doc was the first to see me, it was only due to other doc being booked when I needed to hear the results of my ultrasound.
I hope I'll get to have a doc that "listens" to me, not just the numbers on tests.
Thanks for the replies,
DE

Keep us posted on the results with this new doc. Let's hope she's all you want her to be!! :D
Hugs,

Hi there everyone, :)

Well in Nov, my endocrinologist started me on 75mcg of Synthroid, then January my second ultrasound revealed 2 new nodules, while one of the previous ones has shrunk while on the higher dose of Synthroid.

I saw her a couple of weeks to go over the latest ultrasound and bloodwork, my vitamin D and calcium levels were low so she reminded me to be sure to take my Caltrate (I keep forgetting) and also take Vitamin D supplement.
She also allowed me to start 5mcg of Cytomel along with my 75mcg Synthroid.
I hinted for the T3/T4 regimen, cause I have heard in cases like mine where most of the symptoms, mostly fatigue still lingers, so far it seems to be helping. :) Now to lose this damn weight, I gained 45 lbs in only a few years, and still seem to gain a couple every 2 weeks.
Maybe with fatigue fading, I'll have enough strength to go back to my daily exercise regime, helping to lose this damn weight.
Wish me luck as I wish all of you that have to deal with this stuff.
I found out the achiness in my right elbow/wrist/hand turned out to be "tennis elbow" the other achiness and constant low grade temp on and off is gone now. Yay!! I guess it's a deal that takes a little at a time to regain my physical life back, eh?
Anyone use Cytomel and Synthroid as a combo? If so, I'd be glad to hear how y'all do with that.
Thanks for listening to my lengthy post.
Take care now,
DE

Thanks for the update, DE. Nice to know things are starting to work out for you. If you run into a "magic pill" for the weight loss problem, be sure to post it! :D Mine creeps up a little at a time, no matter what I do. Like you, I think I can put a lot of it down to fatigue, and the inactivity it causes. I did lose a few pounds when I went on a gluten free diet after I discovered I'm gluten sensitive, but unfortunately, it has come back. :eek:
Hugs,

Dr. Stephen Langer was my thyroid doctor in Berkeley up until we moved five years ago. He's the only doctor who tested me for thyroid antibodies, after being hypothyroid for ten years with TSH levels that would swing from 0.5 to 19 (on the same dosage of synthetic thyroid).

After confirming I had Hashimoto's Thyroiditis, Dr. Langer put me on dessicated thyroid and THAT'S when I started getting better. It's been uphill ever since. Dessicated was the key for me.

I know I'm coming into this thread late... how are you doing now? You didn't say if your doctor is a thyroid specialist; many endocrinologists specialize in diabetes.

BTW, Dr. Arem is my sister's thyroid doctor in Houston.

She deals more in the thyroid area, but also diabetes. My mom's endocrinologist seems strictly just for diabetes, didn't even care to persue taking me on as a patient. My pdoc, said it's cause that endo is more into treating diabetes, when I remarked that maybe mom's endo didn't want to take me on cause my mom is his patient and he'd feel odd.
But now I realize I was referred to the right (I hope) endo for thyroid disorders, I see her in May and we'll work further, probably going for needle aspiration for the nodules, cause the med helped shrink one nodule, but last ultrasound (only2-3months after the first) showed I grew 2 more nodules, seems strange that they are growing so fast, makes me fear cancer.
My cousin had thyroid cancer, they removed the thyroid, and have him on permanent thyroid meds. and no cancer had been found to have spread.
A friend of our family's, started with thyroid cancer (wasn't treated when it should have been) which spread and caused breast cancer which then spread like wildfire . . . she died.
Many stories I keep hearing, make me more inclined to keep on top of this.
Grrrrrrrrrrrrrrr! to my former GP's that for years told me I felt so lousy cause I was depressed, and would write scripts for anti-depressants, bah!!!
Oh well I can't cry over spilled milk, but I'm still disappointed I never was taken seriously, and I could of probably been saved of years of feeling unwell.
Sorry, for my rant, and thanks for your reply. :)
I don't get here often, so this reply may have come late, thanks again for your reply.

DE

thyroid problems and wheat + response to Lois
 

Lois-
It was carpal tunnel/tendonitis that finally led me to get my subclinical hypothyroidism diagnosed. I read somewhere that about 20% of people with carpal tunnel and tendonitis (RSIs) have underactive thyroid function. After 4 weeks on a very low dose of Synthroid, no more tendonitis.

All-
I am a 35 year old woman who is apparently at a turning point with my thyroid issues and the pivot point has something to do with a wheat allergy. The quick synopsis is here, longer version below. I was dx'ed with subclinical hypothyroidism 4 years ago and have been on Synthroid ever since. 5 weeks ago, I stopped eating wheat and all of my thyroid-esque symptoms improved...immediately and unequivocally. I lost the 5-8 lbs I have been carrying around ever since my thyroid pooped out, my digestion and elimination are great for the first time in my life (no constipation, etc.), my energy level and brain fx are fantastic, and I'm building muscle easily. The shift was so fast that I had to completely stop my Synthroid within the course of 5 weeks b/c I was becoming rapidly hyperthyroid. I am very hyperthyroid at the moment and realize it may take another 4 weeks for the Synthroid to get out of my system. I did some research on thyroid and celiacs/wheat and found that autoimmune hypothyroidism is linked to wheat issues, but I have never had the antibodies to indicate Hashimotos's disease. Has anyone ever heard of non-Hashimoto's hypothyroidism being linked to wheat? Anyone have any experience with this? Do you know of any resources? Once you cut out wheat, is hyperthyroidism the new issue or is this a transitional experience? All I can say is that as unfun as hypothyroidism was, the current state of hyperthyroidism is no cake walk either and it was actually easier to handle the hypothyroidism because I could prop it up with Synthroid...:)

I was dx'd with Hashimoto's in about 1994. My symptoms were falling asleep in the middle of the day; I'd just feel overwhelmingly tired.

My family doc sent me to an excellent endocrinologist and he did a scan of the thyroid (forget the name, but they inject radioactive iodine) and that showed the problem.

I was started out on .75mcg of Synthroid. Then up to .88mcg (several years later) and now I'm on 100 mcg.

It's quite a balancing act.

I've moved twice since seeing my endocrinologist and I am not too happy with the doctor who watches over me now. It's my GP. He solely relies on bloodwork. I asked him about an endocrinologist and he said I don't need one....

hmmmm.

If you have Hashimotos then you have a goiter; is that right in your case?

The synthroid should diminish it.

As to the Armour...my doctors all think that is not a good idea. That has been the consensus of opinion from all docs I've gone to.

Good Luck; it is a constant battle (our health) thats for sure.

Tootsie:)

Tootise? Understand...TOTALLY!
 

Over ten years ago I went thru the initial 'thyroid diagnosis' food processor. By who I now realise was a very astute GP...one clued into women's issues. My case too started out with a 'goiter'...Lots of specific blood tests and a sonogram and MRI of the affected 'goiter' area. Including a biopsy called an 'aspiration' which came out negative. My own hypothyroid was kept at bay by synthroid at many different doses...I started out at the 50 went up to the hundreds, back down to the 80's and up and down for years. Things were stable UNTIL I acquired the autoimmune CIDP. About 4-5 months later things went crazy. I was still in the CIDP diagnosis phase at the time and the GP at the time did NOT connect any immune issue 'dots'. My synthroid dose was upped a bit and all seemed fine. UNTIL I was diagnosed w/cancer with all the following surgeries and post-surgery chemo. It was the chemo[AI's] to me, that was blocking soo much estrogens...resulting in a substantial change in Osteo numbers that prompted more looking at my own thyroid. Definitely 'Hashi's' and definitely one dead thyroid. How each is related to the other? Well, Docs had the opportunities to check, but simply did not. EVEN tho I was telling them of these issues. We make do as best we can with what we have?
As for Synthroid? A good doc [endo-in this case] should be able to sort out your blood #'s on X dose and adjust things to keep you stable. Honestly I'd been told at first, and still believe, by a wise nurse that Thyroid [Hypo] Is common in pre-to post menopausal women and is, once dose is adjusted one of the simpler things to fix. Thing is, many docs don't know and don't fix. It took me 4-5 years of synthroid med adjustments to find my first happy medium, I'm now on another one [a higher one]. One has to be careful not to do too much or too little. Plus, it takes about a month on any dosage or more to see if things are 'working'. Even then it takes TIME! And? Lots of blood tests in-between.
As for going on Armour or the like? That, from all I've read should beconsidered ONLY after synthroid dose variations have been throughly explored. There are many, many variables in the production and dosages of this product and it doesn't seem to be as simple or convenient to take. IF I had to go that route? I would go to one of the few [I believe] experts in the country who advocate this therapy. Some folks swear by it? But IF you can get by on the other [synthroid] it's much simpler and easier. I DO know tho, that all of the docs who have ever prescribed Synthroid for me? DO NOT allow the substitution of a generic. They all feel that there are substantial differences in the processing and effectiveness of the real thing over the generic. I cannot speak to the use of generic here, as I've not had it?

Tootsie? I agree! It IS a constant battle! I constantly ask myself: 'Who's on First?' about this all. And, my answer always seems to be: 'I don't know!'
We are complex organisims. There may or may not be connections between things. We are also NOT hot house flowers or lab rats. For me tho? My own instincts that 'something is not right!' and the like has kept me going.
DANG!! I hate it when my body is right! Well, we just slog on and try and do something about it.

Tootsie? Does your insurance allow you to see an endo w/o a special referral? IF so? Why aren't you making that appointment? It mite take weeks to get in for that first appointment, but, once IN, hey! You are IN!!!!!!! Go for it! Hugs and all that? - j

I take a T4/T3 combo. I have had my entire thyroid removed - in two separate surgeries. The first due to a benign follicular adenoma where the discovered I had Hashimoto's but did not tell me (nice!) when I was 20, and the second, for colloid nodules and enlarged thyroid. I did not start thyroid until 15 years after the first surgery. I did not get T3 for almost 20 years. I myself cannot take synthroid as I got rashes from either the filler or the coloring so I prefer unithroid and have been very stable on it. I take cytomel as my T3. I need T3 as I have pituitary problems and do not convert well. Armour is great - but keep in mind it has a very high T3 component so you have to need that much.
What was your testing - TSH? Free T4, Free T4? The frees really tell what they thyroid is doing - the TSH just says what the pit is telling the thyroid. Why that is the gold standard, no idea because they don't test if the pit is healthy so it can be one unhealthy gland talking to another unhealthy gland.

I saw an endo in 2007 who said he was sure I had Hashi's for 30 years before being diagnosed. I started being ill with symptoms at 25 years old.

I got diagnosed with "Garden Variety" hypothyroidism in 2003. That started the worst scenario and I'm still paying for it today. That doctor under treated my condition setting me up for future problems. She never tested my Free T3/T4 levels, only my TSH. And she kept my TSH in the middle of the range. I felt horrible but didn't understand why I did. I hadn't educated myself about the disease and the worst, I trusted the doctor to know more than me. She didn't.

Starting in 2005, my symptoms worsened. In 2006, I had more problems. 2007 brought the worst with perimyocarditis and complications. I spent three times in the CCU with complications.

I saw 6 doctors by October 2007, each saying they could help me, only to throw their hands up in the air and give up. I'm on the 7th doctor and he's frustrated because I'm still not well. I've been through several medication changes, the last one causing me to go into thyrotoxicosis. :eek: I'm being referred to an endo but don't see him until mid-June.

There's still something which isn't right. I think it's my pituitary/hypothalamus. Another doctor at the same practice thinks I'm "over thinking." Yet I have some strange symptoms - drinking anything cold makes me cold and I shiver for two hours. I have to wrap myself in my polar fleece bathrobe in a 74 degree room and shiver until I get warmer. If I eat something warm I can get too warm. And recently, I have more strange symptoms with eye focusing problems, facial numbness, ear pain radiating to my teeth, occipital pressure.

Try to find an endo that is a neuro-endocrinologist so that they will look at pituitary issues.
TSH in the middle of the range is icky feeling, you need to be at the bottom to right there, your doc is an @$$.
I am not sure about the other symptoms - if they are related or not as they sound more ENT or neuro - like TMJ, migraine, etc.

I agree my former six doctors were. I'm not sure if I can rate my current doctor yet. I'll know after today when I see him for these strange symptoms.

My TSH now is around 1.0, last time it was done in April. During the thyrotoxicosis it was 0.20, too low for me.

I think I've narrowed down my strange symptoms to two things, eye movement and head movement. I'm fine when I first wake up in the morning. But the minute I have to focus on one thing, close or far, all my symptoms return esp. nausea and dizziness and occipital headache. My symptoms remind me of a severe concussion I had after a car accident in 1983.

hashimotos nodules
 

My doctor said I had multiple nodules and he did not believe that I would absorb my thyroid medications because of the number of them and some were calcified.

I had my thyroid taken out and it had so much scarring and was attached and I had a small tumor on my larynx. My specialist only did the TSH and dropped my synthroid and my test ended up at a 33 and after a hospitalization and the ER doctor stating I need to always get all three thyroid tests, I will not get my thyroid test to a normal level for at least six months because I cannot be titered but every six weeks.

My last T4 was 15 and it should be around 5 I was told. SO all along I was telling them the symptoms I was having and my endocrinologist said my test was extremly high and my dosage needed to be lowered. Well, I stayed in the bed for six months because of her, and I do not trust any doctor just because they are a specialist.

I am having my internist following me and THREE DAYS after they increased my dose back up, my blood pressure was normal wherea it had been at stroke levels for over 8 months even with blood pressure medicine.

I reported the specialist to the AMA and my insurance company and found out that this was not the first complaint.

So yes, I have had a similiar experience and this is going to be my first post op year in August and hope eventually to have a normal lab level.

I appreciate this site because of the good advice. BJ

I had EVERY symptom of hypothryoidism and went to an endocrinologist who said I didn't have a problem. I went to a neurologist who said I had mild a hypothyroid problem. He put me on a T3/T4 combination and all these symptoms went away. The most disturbing of all was that my hair was falling out. My husband has Hashi's and he takes Synthroid. I have lurked at websites and very generally (can't stress that enough) I have noticed that it seems that women prefer (get better results) from the T3/T4 combination medications. The thyroid section at www.about.com is very good. Personally, I think it is supicious that sooooo many doctors only use Synthroid and it is especially troublesome when many women aren't getting good results with this medication and their doctors STILL are not willing to try something else. If that is the case, I think it is time to get a second opinion.

Some people can't handle the T3 meds and I'm one of them. You can't use it if you've had atrial-fib or have any coronary artery disease. I'd love to use it but it causes severe problems. :eek:

Someone please help
 

Hi everyone,
I am in need of some help. I was diagnosed in March of 06 with graves disease/Hashimoto. I have since taken the radioactive iodine to kill my thyroid. Been on synthroid and now on Levothroxn. Nothing works. I just went to my doctor this week and he says my counts are not that far off for me to feel so horrible. I am not hungry, very sleepy, sad, achy and just feel miserable. My poor husband is really trying to understand but...... Any suggestions would be gratefuly appreciated. Alley

Do you have Graves Disease or Hashimotos Thyroiditis, or both?
They are pretty opposite of each other, but as I understand it the Hashimotos can masquerade as a hyperactive thyroid (including Graves Disease), then go to euthyroid, and hypothyroid.

I would actually see another doctor if I were in your position. Your doctor completely ignored your concerns by telling you that you shouldn't feel bad because your "counts" are relatively normal. He did nothing to attempt to ascertain what was wrong, and did the equivalency of telling you that it was all in your mind. That is what we call in the world of psychology---invalidation.

Get thee to a different doctor--- and make sure it's an endocrinologist.
Best Wishes.

I am 41 years old and I have hypothyroidism. And with this I have Goiter's as well that they are keep a eye on. I have problems losing weight it vary's and boy I get very frustrated with it......minimouse

Hello:

I'm new to NeuroTalk and this is my first time posting in this forum.

I have a number of Autoimmune related disorders and Hasimoto's is one of them. I've been diagnosed with it for some time and have been on thyroid replacement therapy for some time. I was recently hospitalized because of a huge chemical imbalance in my system where my thyroid levels bottomed out, potassium ( most of the electrolytes, etc had just run amok ). Found out when a different endocrinologist was assigned to me in the hospital that I've been on the wrong thryroid replacement for a lifetime now. Apparently while most individuals are deficient in T4 I'm also extremely deficient in the less common T3 ( which doesn't respond well to long term oral replacement apparently ). Since they added the replacement for the T3 to my daily medications I've done a lot better in that respect. Although it really frustrates me that while I've had to put up with doctors claiming I must not have been taking my meds appropriately for all these years ... those professionals that took the time to berate me for my alleged neglegence never once considered that there might be another reason for my constant struggle to maintain the thyroid replacement in my system ... It's been one of those situations where I knew something else was wrong but ... as the professionals love to quote "When one hears hoof beats one looks for horses, not zebras." ... well, while the zebras are definitely less common, the fact remains they're out there and mine have been running awry for a lifetime!

We're glad to meet you all and hope to be able to share information, support and encouragement with you all.

Take care, be safe and well: kefrin

Hashimoto's
 

I actually came on this site for my own Neuro problems but, saw the Autoimmune Forum and Hashimoto's.

Approx 10 yrs ago, my son then 24 yo, my son suddenly started having chills then hot flashes, extreme fatigue falling asleep in his college classes and unable to run (he had been running up to 10 miles a day) he also had huge mood swings. Our Internist worked him up for everything from flu to Mono....after many test, he was diagnoised with Hashimoto's. Ironically enough, across the country my 27 yo nephew (a Marine) was being worked up for Gulf War Syndrome and low and behold, he too was diagnoised with Hashimoto's. It has become my understanding that the condition is very uncommon and even more so in men. Neither of these guys "looked" or acted the part of someone with thyroid problems....my son a distances runner and my nephew a Marine sargent. Neither had goiters.

My son currently takes 250 mcg of Synthroid and has been all over with his dosing. I read the post about T4 and T3. For the past year+ my son has been having joint pain, sleeplessness and is now being treated for depression. This is a kid who prior to diagnoises was a very laid back kid and then after being put on Synthroid would have periods of same. It has always been very obvious if he needs dose adjustments or has forgotten to take his Synthroid for a couple of days. I guess now I'm just wandering if he might actually have a T3 problem.

He has primarily been treated by the family Internist except when he was going to The Ohio State University when he was followed by the medical college Endocronologist professor (yeah he was excited about caring for my unusual son, lol). I am wondering if he would not fare better to be followed by an Endo once again.

Hello to my fellow Hashimotoers!
 

I'm new here, signed up tonight. Just wanted to add to the Hashimoto folks who have all of my love and support. I started have symptoms and low blood counts when I was 15. I was officially diagnosed when I was 25 and was so bloated I felt like if you stuck a pin in me I would explode! This doctor was right out of med school and knew to check for ANA levels and the like. Mine was through the roof. I am soon to be 54 and last year I went to a new encrinologist who preformed an ultra sound on me. I had never had one. There is no thyroid!!Nothing's left! No tissue, which means my antibodies have feasted on my thyroid all these years and there is nothing left.

I do want to caution some of you if you have Hashi's and Sjogren's Syndrome, you are at a greater risk of developing Non-Hodgkin's Lymphoma. I had both the thyroid disease and the Sjorgren's and developed a mean case of Non-Hodgkin's with a prognosis of 6-8 months to live.

I just want these folks to be on top of that. I'm not sure why they follow in three's like that but that is what my rhuematologist told me.

Now I don't have to worry about getting cancer on my thyroid nodules, since I have no signs of a thyroid anymore. And also to alert experts, doctors, know-it-alls that yes, autoimmune diseases can be serious and I am still showing thyroid antibodies in my blood. I'm not sure what that means. Are they looking for their next organ victim? I don't mean to scare anyone, just trying to have a sense of humor, but I am going to ask that question, even if I get laughed at. I don't care, it's my body that's gone astray, not theirs!

Hello everyone i am 19 with hashimotos thyroiditis as well.

Guys whatever you do DONT see a endocrinologist all are useless and to be honest dont have a clue what they are doing in treating you.

Anti-aging specialists are where its at they know how to help you. They know the exact dose of thyroid you should be on and then adjust results accordingly to how you feel.

Blood tests can be misleading. But its ideal to be at the high normal range for both Free T4 and Free T3 levels.

My labs are: Free T4 - 9 to 22, Free T3 - 3.0 - 6.0. so in this case youd want your Free T4 at 17-22 and Free T3 at 5.0 and above.

Their is also the issue of wilsons temperature syndrome. If your temperature is constantly lower than 36.5 Celcius you likely have it. Low body temperature will cause serious problems. This can be corrected with moderate to high dose T3 therapy for a month or so and then all symptoms will be allieviated without you having to continue the medications.

Hashimotos is linked to gluten intolerance yes. hashimotos can also happen from low iodine intake for long periods of time.

B12 deficiency can also cause hypothyroid like symptoms and hypothyroidism itself. So its always good to be persistant and find out the underlying cause. Even people with pure depression and nothing else (which is rare) have problems with neurotransmitters and once they can get those neurotransmitters up through supplements say 5-HTP for serotonin, L-Dopa for Dopamine their depression might improve significantly without SSRI medications.


Their is also Helminthic therapy this is used to treat autoimmune diseases ranging from MS, Hashimotos, Chron's disease, Ulcerative Colitis etc.

Helminthic therapy is the treatment of autoimmune diseases and immune disorders by means of deliberate infestation with a helminth or with the ova of a helminth. Helminths are parasitic worms such as hookworms. Helminthic therapy is currently being studied as a treatment for several auto-immune diseases including Crohn's diseasemultiple sclerosis, asthma, and ulcerative colitis. Autoimmune liver disease has also been demonstrated to be modulated by active helminth infections.

Their is more information at wikipedia. A friend of mine cured his Multiple Sclerosis with this helminthic therapy.

Also everyone thyroid therapy will have a negative effect on your adrenal glands and their is always the issue of balacning thyroid and adrenals. The thyroid controls the metabolic rate and the adrenals have to handle the stress of the extra metabolic function. If thyroid doses are high and adrenals are stressed or burnt out you end up feeling like crap again.

So i would use some adaptogenic herbs with my thyroid meds. Particularly - Siberian Gingseng, Panax Gingseng, Astralagus Membrecanus, Licorice Root, schizandra chinesis. You can usually get all these in a tonic.

Finally Zinc, Selenium and Iodine are the most imporant minerals for the thyroid gland. So levels of these should be checked via blood and urine in anyone with hashimoto's.

Selenium has been proven to reduce Thyroid Peroxidase Antibodies at 200mcg per day for a couple of months.

Hope this helps. If anyone needs any more info feel free to PM me, i would love to help.

;)