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Old 09-05-2007, 07:17 PM   #1
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Multifocal Fibrosclerosis/Riedel's Thyroiditis?

Anyone here heard of it or been diagnosed with? Apparently it causes systemic symptoms and can affect all parts of the body. I'm not sure if this is something I should ask my doctor to look for, but I can't find very much info on it. What little info I have found on it makes me wonder if it isn't as rare as they think, and is just underdiagnosed. So many people I have talked to seem to fit the profile of someone with this disorder. If anyone is familiar with these, I would appreciate information.

Thanks!

 
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Old 09-06-2007, 10:33 AM   #2
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Re: Multifocal Fibrosclerosis/Riedel's Thyroiditis?

I don't know about the multifocal thing, but I have heard of Riedels when I was researching thyroid cancer.

Riedels thyroiditis is really really rare, and the thyroid hardens over time and it becomes very painful. I was sort of hoping during research my thyroid cancer was that instead---no such luck! They are very often confused for one another.

Riedels is growing rarer over time for some reason, there are less and less cases, and it's very difficult to remove the thyroid over time as it becomes very hard and attaches itself to other organs.

You can always ask your doctor, but they do hate it when pp. match up symptoms over the internet---it drives them crazy for some reason.

 
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Old 09-06-2007, 12:31 PM   #3
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Re: Multifocal Fibrosclerosis/Riedel's Thyroiditis?

Aye, how dare we self-diagnosis.. well my GP may hate it.. but my hunches and pushes have been spot on everything but the carpel tunnel.. humm but I have hashi's which sometimes makes on think they have carpel tunnel when the hand and wrist pain hits over drive.

Sincerely,
MG
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Old 01-27-2008, 03:23 PM   #4
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Re: Multifocal Fibrosclerosis/Riedel's Thyroiditis?

I have been wondering for a while now if I have Riedels. I asked my endo and he said "Well lets check in with the ent first" So I did that but he was of no help at all. My new labs now show high levels of ant******** peroxidase antibodies and high levels of thyroiglobulin antibodies and a high level of T4. I havent seen him yet to discuss these.
It seems I have all the symtoms of Riedels from what I read.

 
Old 01-27-2008, 04:47 PM   #5
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Re: Multifocal Fibrosclerosis/Riedel's Thyroiditis?

Look up Hashimoto's Thyroiditis. Positive or high TPOAb and TGAB = having the autoimmune thyroid disorder Hashimoto's. You need free T4 and T3 levels tested. This will give you a better evaluation of your thyroid blood concentrations.

MG
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Old 01-27-2008, 06:32 PM   #6
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Re: Multifocal Fibrosclerosis/Riedel's Thyroiditis?

Thank you MG,
I did do the free t4 and the t3. The free t4 was a little high at 3.9 and the t3 was normal at 105. I have been hyper now for at least seven years taking a small amount of tapazole every other day to keep my tsh in the normal range. After reading what Sue had to say maybe I have both (hyper and hypo) now????????

 
Old 01-27-2008, 06:59 PM   #7
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Re: Multifocal Fibrosclerosis/Riedel's Thyroiditis?

Quote:
Originally Posted by petite11 View Post
Thank you MG,
I did do the free t4 and the t3. The free t4 was a little high at 3.9 and the t3 was normal at 105. I have been hyper now for at least seven years taking a small amount of tapazole every other day to keep my tsh in the normal range. After reading what Sue had to say maybe I have both (hyper and hypo) now????????
What was the T3 range? 105 is suboptimal in all ranges I have and low on the ranges my lab use. You could be hypoT as a result of the T3 concentration and the T4 concentration is keeping you hyperT.

FYI:
Hashitoxicosis is an autoimmune thyroid disorder disputed by some Endos.. ware the ones that scoff at it.. in which individuals with autoimmune hypothyrodism, usually Hashimoto's thyroiditis (HT), experience intermittent or sporadic periods where they also have symptoms of hyperthyrodism. In some ways, these patients can be described as having both HT and Graves' disease since the antibodies associated with both diseases are present.

The disease process in Hashitoxicosis focuses around the thyroid cell destruction seen in autoimmune hypothyroidism. Here, thyroid peroxidase and thyroglobulin antibodies cause thyroid cell inflammation and destruction. As thyroid cells die, their stored supplies of thyroid hormone are suddenly released into the blood circulation. These sudden bursts of thyroid hormone are responsible for the symptoms of hyperthyroidism. Often patients think that they need to have their medications adjusted and they suspect that their thyroid medication is too high. On other days, when they're dragging, depressed and experiencing weight gain, they suspect that their thyroid hormone replacement dose is too low.

The hormone bursts are T4.. since your T4 is what is high... make your own assumptions. Were you ever tested for Graves? Did you have an uptake scan prove you positive for Graves by chance? Another maybe comforting thought.. Hashi's will eventually kill your thyroid and you will go hypoT.. when this occurs you don't have to worry about the hyperT issues any more just medication supplements. I wish you weren't going through this, but you are not alone.

MG
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Old 01-27-2008, 10:00 PM   #8
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Re: Multifocal Fibrosclerosis/Riedel's Thyroiditis?

Thank you. I really appreciate all this info.
T3 total is 60-180....mine was 105
T3 uptake is 22-35%.....mine was 35
T4 total is 4.5-12.5.....mine was 11.2
T4 free is 1.4-3.8......mine was 3.9
My tsh level has been around 1 for quite some time till about a year and half ago. It has been slowly rising now at 2.48 so i know I am slowly going towards the underactive side. For a long time I have been on a very low dose of tapazole of 5mg every other day. Now I take one and then skip two days.
My main problem is that my neck is so extremely weak and my head shakes now. Its actually hard to hold my head up and none of the dr's know why.
When I read about riedels thyroiditis it said if you have riedels you are likely to also have dysautonomia so I looked that up and have almost every symtom of that..............and guess what.........tremors is one of those symtoms.
When I had my uptake scan about seven years ago my numbers were very high and they said at that time that I most likely had graves.
I appreciate any of your thoughts.
gloria

 
Old 01-28-2008, 07:13 AM   #9
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Re: Multifocal Fibrosclerosis/Riedel's Thyroiditis?

Quote:
Originally Posted by petite11 View Post
Thank you. I really appreciate all this info.
T3 total is 60-180....mine was 105
T3 uptake is 22-35%.....mine was 35
T4 free is 1.4-3.8......mine was 3.9
My tsh level has been around 1 for quite some time till about a year and half ago. It has been slowly rising now at 2.48 so i know I am slowly going towards the underactive side.
Okay now we are getting somewhere. First a TSH or 2.5 -3.0 is considered borderline thyroid failure by the forward thinking thyroid savvy MDs. So you are underactive.. but where? The T4 conversion to T3 is dysfunctional. Not uncommon it is actually common in 2 out of 3 thyroid patients to have T3 conversion issues. It looks like you are converting the T4 to T3 like crazy given your T3 Uptake.. but it isn't showing up in your T3 concentration. Your T3 concentration is 37.5 % this is low normal and most have hypoT symptoms in this range. Are you on birth control pills or hormone replacement (estrogen/progest.)? This will artificially increase your T3. Mine is 20% higher than my FT3.. because of BCs and the added 20% standard deviation error in the test itself. Your FT4.. I am ignoring the T4 it is unnecessary when FT4 is run... is 104% definitely hyperT range and this can be your issue with hyperT symptoms. I am betting you are converting that T4 to Reverse T3 (RT3 is the lab code). It is the inactive T3 counter part.

I think you need to go to an ENT and discuss your thyroid. Maybe get a full evaluation with a second uptake scan and an ultrasound. AND if it has been 3 months or so.. I would get an antibody retest for Hashi's and I would ask for a Graves antibody test based on the previous uptake scans findings (TSI and TRAb lab codes). (THIS is my opinion, I am not an MD.. you should discuss this with yours and see what they think) Also get a referral to an ENT familiar with thyroids.. maybe one that prescribes Armour.. for an inspection of your thyroid by ultrasound/palpatation. They would be the best to judge whether or not Riedels is an option.

Hashimoto's has been known to make the muscles in the shoulders, neck, triceps, and quads weak in some. The everyday effort of standing, walking, moving can become an issue as a result. I had shakes and tremors in my arms and hands and my head felt like lead when my antibodies went spastic and my T4 and T3 levels plummeted. This normally occurs when you have high antibody levels >1000, but others have been documented with those side effects with less antibodies.

In the mean time worrying will just make matters worse. Stress and Hashi's go hand in hand.. but they do not hold hands well. Picture the toddler kicking and screaming and fit pitching while the mother just drags him along... never a pretty picture. I know it is hard. I watch my mother suffer for over 13 years before the Hashi's/Graves diagnosis and another 10 after it trying to get adequate treatment after having a partial thyroidectomy. My Aunt B had two RAI's and was told to have a third before she put her foot down and had her TT. Now she is good.

From my experience and others about here.. you have to fight for your own care, most MDs treat you as minimally as possible. Why? The thyroid is the overseer of your body's daily function.. if they treat you aggressively and push to optimize there is more chance that you will have the serious hyperT symptoms. It is easier to blame hypoT on your diet and lazy lifestyle.. not like it will kill you.. Sorry memory vent there. As if running 7 mi a day and eating a 1000 cal diet is lazy! Bad Endo.. my physical trainer corrected her.. but still! How low can it make you feel when you are already hypoT depressed and fatigued to be told, you are just lazy your labs are normal except for antibodies? Well I am faxing every MD finding as the more educated I told you so to that lady's face.

I truely hope you get to the bottom of your issue soon. The sooner the better. Good luck. In summary tests you should have run: FT4(as a double check these things flux in your body after all), FT3, RT3, TSI and TRAb... and TPOAb and TGAb if it has been a few months.

Sincerely,
MG
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Old 01-28-2008, 01:02 PM   #10
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Re: Multifocal Fibrosclerosis/Riedel's Thyroiditis?

You have no idea how excited I got when I saw how long your letter was. I was thinking YEAH more information. Thank you so much.
No I am not on birth control or hormones. I am in perimenopause at 52 years old with terrible hot flashes. UGH. I have always been pretty good at keeping myself fit forcing myself to excercise no matter how tired (although I have gone through periods when I just cant do anything) and I weigh about 107.
I did go to an ent last week and he was of no help whatsoever. He basically said that stress could be causing my issues. I am really not a stressful type person. I am a rather calm person. Always have been. Thank goodness......I need that now. He even said I didnt have any swelling when it is totally visible to me and to my general practitioner. The pressure in my neck is horrible and my breathing is bad.
My next appt. with my endo is about a month away. He ordered these labs about two weeks ago so I havent discussed them with him yet.
What is Armour? I keep seeing it popping up in some of the web sites I have been looking at.
Thanks again for your time. It is so appreciated.
I hope you have a great Monday.
Gloria

 
Old 01-28-2008, 07:42 PM   #11
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Re: Multifocal Fibrosclerosis/Riedel's Thyroiditis?

Armour is a natural hormone replacement medication made from true pig and cow thyroid hormone. It is a combination of the naturally occuring ratio of T4 and T3 in your body. When on Armour or any other T3 containing supplement your TSH is suppressed and therefore an invalid indicator of anything. You have to optimize yourself on FT3 and Ft4 concentrations alone when taking any T3 supplementation.

So the ENT was a bust? Your GP seems helpful. Ask him to get you an ultrasound of your thyroid. This is cheap and non-invasive.. it is also quick and will tell you what your tissue consistency is and whether your thyroid is dense, enlarged, small, etc. Also it will allow for visual of blood flow or lack of blood flow through your thyroid as well. What is your zipcode? I can dig up Armour certified physicians in your area and you can start checking them out. I know how you felt when the ENT shot you down. My Endo did the same thing to me and I went MD shopping immediately after. Search on Armour physician finder and you can look up MDs with out sharing your zip code.

I am certain you need someone willing to treat your T3. As to your symptoms.. and Reidels.. you need to get someone to either humor you and run the appropriate tests or work with you to find the answers. My solution was an internal medicine specialist who practices integrative medicine. SHe was on the Armour physician finder data base. She hasn't messed around. It took five years to get tested and figure out that... yes it was my thyroid and Hashimoto's causing my issues since my pregnancy.. only to be told. Your TSH is normal you just need to accept that you may prove infertile or have many miscarriages. WHAT? Well that was not acceptable to me.. so I forced my old IM to refer me to an Endo.. she told me we had to wait and gave me all these long explainations because I proved up on my thyroid mechanisms and function. Then sent me off. Things got worse and my hair started falling out.. I faxed her the drop in my FT3 and Ft4 levels.. but my TSH was 1.6.. NORMAL. Her nurse told me not to bother her until my TSH hit 2.5 they do not treat symptoms. WELL.. so I went and got evaluations for every symptom: ENT, Dermatologist, Neurologist, Neuro-Opthamologist, Cardiologist, ALlergist, OB-Gyn.. you get the picture. And they all verified the symptoms but could only point to autonomic and auto immune responses.. so thyroid. Even with the other MDs telling this Endo.. it is her thyroid, treat it. She refused. So no Endo for me. I am going to my IM and she can do what she will.

It is hard enough to get thyroid treatment.. it is even harder to get good thyroid treatment. You might want to post looking for a good MD in New Jersey, please help. You might be able to get into a good ENT or IM before you can get in to see your Endo. If not pile up the facts, keep a symptom log and fight for a change in treatment.

Sincerely,
MG
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Old 02-06-2008, 09:54 PM   #12
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Re: Multifocal Fibrosclerosis/Riedel's Thyroiditis?

Hi MG,
Thank you again.
I did have another ultrasound last month. It doesnt say anything this time about being enlarged. It says right lobe measures 5.1x1.6x1.9cm and the left is 5.0x1.4x1.5 cm with a upper pole hypoechoic nodule 4x2x4mm and a new 5x3x4 interlobar nodule. The ultrasound of sept 06 says the right lobe measures 5.8x1.5x2.2cm and is enlarged and heterogeneous with a 4mm nodule. Isthmus measures 4mm with no nodules. Left lobe is 5.7x1.4x1.7 cm and the entire left lobe is enlarged and heterogeneous. My endo didnt think anything of it.
My zip is 08028.
I dont understand why you think I should have my T3 treated since the blood work is in the normal range. t3 total was 105 range is 60-181 and t3 uptake was 35 range is 22-35%. I will have to start doing some more reading so that I can understand this better.The free t4 was high at 3.9 normal range is 1.4-3.8 along with the peroxidase and throgloblin being high. Those last two point to Hypo dont they? but the t4 points to hyper right????
Have a good day.
gloria
I know about the hair falling out. I have lost so much hair. Thank God it was thick to begin with otherwise I would hardly have any right now.
Yes, I too have been to all those other doctors and am still running around. Next is the upper GI guy.

 
Old 02-07-2008, 07:31 PM   #13
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Re: Multifocal Fibrosclerosis/Riedel's Thyroiditis?

Petite,

Here are some physicians from the Armour Physician Finder database in your area.

Bonnie Shanis, MD - Endocrinology, Diabetes, & Metabolism - Ambler

Walter Schwartz, DO - Internal Medicine - Springfield

Daniel Schwartz, MD - Family Medicine - Philadelphia

Vincent La Rosa, MD - Internal Medicine - Bensalem

Steven Mark, MD - Internal Medicine - Paoli

There were none in the 10 mile or closer radius to your zip.. but the others are between 15-30 miles. The reason I think T3 might be in order is that you are low there.. but high in your T4 concentration. A small amount of T3 might shut down the excess T4 production. But this is a guess. You have Hashi's and you are fluxing in your hormones. You have nodules and things just suck. Hopefully one of the MDs above can help get you straight.

MG
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Old 02-07-2008, 07:56 PM   #14
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Re: Multifocal Fibrosclerosis/Riedel's Thyroiditis?

Thank you.
So you really think I have hashi's now??? I have not been told this yet by the dr. Maybe I will hear it at my next appt in a couple weeks because I have not spoken to him yet since before my last labs. We have been treating me all these years for Graves. I actually stopped the tapazole myself about 10 days ago because I saw my tsh rising over the past year slowly to 2.49 now. So I guess it is possible that my thyroid is finally burning itself out???
Glo

 
Old 02-08-2008, 07:35 PM   #15
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Re: Multifocal Fibrosclerosis/Riedel's Thyroiditis?

It is possible to have both. Graves will dominate early.. but Hashi's is old slow and steady and will win out in the end as it kills off more and more of your thyroid. If you have high TPOAb and TGAb.. you have Hashi's. Biopsies will confirm Graves/Hashi's. First you need an MD that will work with you.

MG
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