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Old 04-21-2008, 07:19 AM   #1
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Thyroid care concerns around the world - week 2

Hello Ladies and Gentlemen,

Speak up boys! We need a male perspective. I promise not to bite! Until we get men on board.. you all will just have to listen to the ladies nag and gripe!

I am starting week TWO as promised! First things first we learned in week one that getting treatment is never easy and you can not give up. You must keep fighting if you have a family history of hypoT and your symptoms indicate it may be endocrine in nature. So keep this thread in mind and continue to share your woes and what is or is not working for you. Getting treatment is hard enough, getting competent and optimal care is even harder.

I am including a summary of things learned in week One. The general points are as follows (THE MG's THYROID SCHOOL – Fondly taken from Apple):

BASICS:

What is normal TSH range versus optimal?
Optimal is 50-80% of normal range. This statistic comes from the N A C B where they determined 85 – 90 % of non-dysfunctional thyroid MALES had TSH levels between 0.89-1.1. Women of child bearing years need to have Fts in the 60-80% range of normal. Women after menopause tend to need slightly lower Ft values in the 40-70% range. (This is just my MFM and 2 Obs knowledge on this.. trying to dig up a public access postable journal article on this information) Many MDs do not know how to determine where you are in the normal range. So here is the formula you need to know and come to love.

Given the following formate:
Free T or Total T value (lower limit - upper limit)
0.85 (0.8-1.8)
Your percentage is calculated as follows:
[Your FT value - lower limit]/[upper limit - lower limit]*100 = %
[0.85 - 0.8]/[1.8-0.8]*100 = 5%
Optimal care is when your TSH is around 1 on a T4 supplement alone with Ft's are in the 50-80% range of normal. T3 supplementation such as cytomel or Armour results in TSH suppression and as a result you must gauge thyroid supplementation on your T4 and T3 hormone levels and symptoms alone.

Here is a summary of the A A C E and N A C B statements on the latest normal TSH range.
November 2002: The National Academy of Clinical Biochemistry (NACB), part of the Academy of the American Association for Clinical Chemistry (AACC) was first to issue new laboratory medicine practice guidelines. This is their job so it is to be expected they alter the requirements MDs use for the diagnosis and monitoring of thyroid disease. The particular statements of interest in the 2002 guideline announcement are:
"It is likely that the current upper limit of the population reference range is skewed by the inclusion of persons with occult thyroid dysfunction. . . . In the future, it is likely that the upper limit of the serum TSH euthyroid reference range will be reduced to 2.5 mIU/L because >95% of rigorously screened normal euthyroid volunteers have serum TSH values between 0.4 and 2.5 mIU/L. . . . A serum TSH result between 0.5 and 2.0 mIU/L is generally considered the therapeutic target for a standard L-T4 replacement dose for primary hypothyroidism."

Non-US Mds may turn their nose up at this information.. but it is always worth a shot. This announcment and research was then picked up and reviewed by the A A C E. Based on the N A C B's findings, in January 2003, the American Association of Clinical Endocrinologists (A A C E) made the following important announcement that all the MDs should get.. but haven't yet:
"Until November 2002, doctors had relied on a normal TSH level ranging from 0.5 to 5.0 to diagnose and treat patients with a thyroid disorder who tested outside the boundaries of that range. Now A A C E encourages doctors to consider treatment for patients who test outside the boundaries of a narrower margin based on a target TSH level of 0.3 to 3.0. The A A C E believes the new range will result in proper diagnosis for millions of Americans who suffer from a mild thyroid disorder, but have gone untreated until now."

It has now been 8 years since the original N A C B guidelines release, many laboratories have not yet adopted these new guidelines for a normal range, and many physicians are either unaware of the A A C E announcement or refuse to change their procedures until the labs revise their standards. Many of the people on this board can tell you that you can not trust or expect your MD to know this fact. Let them know you know!

An article that may help:
"Thyroxine treatment in patients with symptoms of hypothyroidism but thyroid function tests within the reference range: randomized double blind placebo controlled crossover trial."
[url]http://www.ncbi.nlm.nih.gov/pubmed/11668132?dopt=Abstract[/url]
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Last edited by mkgbrook; 04-21-2008 at 07:27 AM.

 
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Old 04-21-2008, 07:46 AM   #2
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Re: Thyroid care concerns around the world - week 2

Hashimoto's Facts – [I need to work up a Graves Facts list too]:
Do antibodies correspond to your level of TSH?
My personal non-MD opinion and answer:
Not necessarily. The TSH and antibodies production mechanisms are not directly linked. My layman's explanation on the matter is the TSH (thyroid stimulating hormone). This is the pituitary function call to the thyroid that screams out.. HEY! I NEED MORE T4, MAKE IT NOW! The thyroid then responds by activating its production enzymes.. TPO and TG. Now the thyroid begins to produce more T4 so the TSH will decrease. In the case of Hashimoto's your immune system sees the TPO and TG as a threat to your system. So every time the TPO and Tg are activated, TPOAb and TGAb are produced to attack and destroy the thyroid. How long and how high the antibodies go is up to your body. Prophylactic treatment of my Hashimoto's may have saved my adrenal glands and no telling how many years of dysfunction symptoms. Studies indicate this may be true in others as well. Here is a national institute of health study on the matter.

[url]http://www.ncbi.nlm.nih.gov/pubmed/11327616[/url]
The acredited referreed publication on this matter:
"One-year prophylactic treatment of euthyroid Hashimoto's thyroiditis patients with levothyroxine: is there a benefit?" Thyroid, 2001 Mar;11(3):249-55

ALL that an MD can tell for certian is whether or not you have antibodies present. If you are positive in TPOAb or TGAb you have Hashimoto's. This means your immune system is attacking your thyroid and will kill it eventually. WHEN? Well that is as individual as you are. Depending on how many you have... the destruction of your thyroid could be near complete... just beginning.. or at its peak. Anything over 1000 is seen as BAD. When levels get this bad.. added AI side bonuses should be looked for.

Other common issues with Hashimoto's:
1) Hashimoto's is know for thyroid flares, oscillations between hyperT and hypoT states. Some MDs referr to this as Hashitoxicosis.. others say Hashitoxicosis is having Graves and Hashimoto's disease. What Hashitoxicosis means is you have hyper and hypo thyroid episodes and medicating will be a constant adjustment issue.
2) Mild to moderate “joint and muscle pain”. This particular symptom is also one of those that seems to linger in some patients, months or even years after starting treatment for their hypothyroidism, with hormone replacement medication.
3) Some patients actually experience a worsening of their joint/muscle pain, once beginning thyroid medication. I had this happen. I am not sure if it is the fact I went so hyper after adjusting to 75 mcgs or just a side bonus of being thyroid dysfunctional and my body not liking the fact i am trying to keep it normal.
4)Most patients see improvement of rheumatic symptoms with hormone replacement therapy to treat their hypothyroidism but if relief is minimal, they may to be tested for co-morbid arthritis, including the autoimmune types.

How do I know when my thyroid is underattack and I need to watch for a Hashimoto's flare?
Well when I go hypoT because my t4 and t3 levels are not right for me.. my pitutary gland calls to my ever growing thyroid by way of a TSH shout out. "Hey, Thyroid.. need some more T4 get cooking!" The thyroid sighs and thinks about it.. then tries to do its job. In Hashimoto's patients and my case the thyroid activates the TPO enzymes begin to make and release T4. It is at this point my 2000 lazy and bored TPOAb and TGAb perk up and yell, "ATTACK!" Or whatever they scream as they charge and attack. It is at this point that my thyroid feels full and aches, it is a continual process that starts out more intense in the morning and lessens as my T4 supplementation takes away some of the burden. The throb, pulse, ache and swellen in that area just at the base of your throat bracketing your wind pipe is classic thyroiditis.

I hope this helps you help yourself. Now how did you all get treatment and how is it going?
MG
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Old 04-21-2008, 07:54 AM   #3
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Re: Thyroid care concerns around the world - week 2

Thyroid and pregnancy.

Ugh! I am going to point you to my long winded posts on this matter. Save on typing it all again.
[url]http://www.healthboards.com/boards/showthread.php?t=585150[/url]

Adrenal and thyroid dysfunction.
My story and search on things is here.
[url]http://www.healthboards.com/boards/showthread.php?t=585294[/url]

I think that is all for the moment. I will add as needed. Also make sure you look into good sleep hygiene and sleep disorders. They can go hand in hand with thyroid issues. Sleep deprivation alone can give you a fit.

MG
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Last edited by mkgbrook; 04-21-2008 at 08:01 AM.

 
Old 04-21-2008, 11:13 AM   #4
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Re: Thyroid care concerns around the world - week 2

MKG-
Thank you for the great info on hashi's. Your descriptions of the assault are quite helpful and funny too. Sometimes a bit of humor helps esp. when you are under assault! One thing I wanted to ask you is about constriction of the thyroid with hashi's. I tried to get this question to your attn. last week but it got lost in alot of messages. My TPO antibodies were around 2500, then went to 1250--I'll be tested in a few weeks to get current numbers. Let's just say I am feeling under major attack, and recent swelling in a neck lymph gland was said to be related to hashi's. I have 7 nodules 2-8mm. OK so now to the queston , what about thyroid constriction??
Over the past 16 months , on treatment 75mcg synthroid and now 88-----one lobe has reduced by 54% and the other by some 20-30%.Now the lobes are roughly same size. I don't have the numbers in front of me right now. Anyway at first u/s they noted normal size thyroid. This last u/s they noted small thyroid.
In searching I found some info that the attack can cause scarring of thyroid tissue and that scar tissue has a tendency to constrict. That this constriction may lead to constriction of airway and esophagus and then thyroid removal would be advised. I wonder do I need to wait for such constriction or symptoms to get a removal or should I check into this now before worse happens.
Since my thyroid is dying anyway and it has so many nodules to be watched AND the endo cannot seem to get my levels stable--why not just refer me to the ent for thyroidectomy-
What do you think about my situation AND do you know anything about constriction?

 
Old 04-21-2008, 11:29 AM   #5
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Re: Thyroid care concerns around the world - week 2

Hey Osteo,

It doesn't help I was out of town for a bit and came back to a flood of people in need.

Constriction can happen also as the thyroid is killed off the lobes can atrophe and harden causing issues. As to your case the fact that they are decreasing in size as meds increase may just be an indicator that you are getting close to where you need to be on meds and inflammation is going down. Now if in addition to this size decrease you are feeling constriction and pressure on your esphogus then something needs to be done.

Are you having issues swallowing? I am since starting meds my ENT was hoping things would shrink and get better they have not. My left side was below normal size on my first scan.. I have no idea what size it is now. My right was enlarged with a singular nodule. I feel my thyroid constantly and have been having issues swallowing and eating this last month. Also of note I am going hoarse more often as well. It is not post nasal drip either. My Allergist and neurologist are looking and interviewing Endos in other states for me (Georgia and Alabama). Mean while I am in my own driver's seat with this thyroid adrenal mess.

I am going to be going back to my ENT after my next rounds of labs and asking what he recommends. Once the nodule was determined the physical structure and state of my thyroid was placed in his hands. Medication and hormone balance are in my hands and my IMs hands. My endo was hands off to begin with.. so I am not even having my blood work and scans sent to her anymore.. after all why waste the paper when in her opinion it isn't my thyroid that is an issue, my TSH is too normal.

I believe in second opinions and given your issues and the state of your thyroid would request to see an ENT. You do not have to have your Endo make the recommendation your GP or IM or OB can do it. I think I would press for its removal if I were you. My MFM believes if you can not get set in meds on 9 months.. something else may need to be done. He is expecting my thyroid to come out this summer. I want the da..ng thing out.

The main thing to worry over with constriction and lobe atrophe is how it works into the vocal cords if you are having vocal issues you need to get to an ENT either by ordering a second opinion through the Endo or by using another MD. MDs are only human. I will not trust just one with my care any more. I make sure all my MDs know wht the other is doing and see them all at least once a year. This allows me to get as many opinions on the issue as possible. My MDs ruling opinion in my case is I am screwed up.

MG
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Last edited by mkgbrook; 04-21-2008 at 11:30 AM.

 
Old 04-21-2008, 12:15 PM   #6
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Re: Thyroid care concerns around the world - week 2

My situation is different than yours. I have been on meds for a yr. and a half already and can't get stable. But it is also similar to yours in a way-I want it out. But, I worry about negative effects of surgery.
Do you know whether in a case where they are not removing for cancer but because of hashi's instability and various nodules-would they take out less than the whole --would it be what I have heard is called a sub total? I don't understand what a sub total is -do you. It seems like something difft. than a lobectomy.

 
Old 04-22-2008, 05:05 AM   #7
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Re: Thyroid care concerns around the world - week 2

mkgbrook - thank you so very much for all your info and for sharing, you are a gem

I simply can't get over how much there is to learn. I'm Hashi's too, but without the complications at this stage which yourself and osteo are experiencing. I have got the adrenal complications though and a pancreas not giving off sufficient enzymes to digest protein.

I have been trying to read many of the other posts here and trying to educate myself, but i think it will be a while before things sink in. It doesn't help that all of this has depressed me and i'm finding myself getting a bit over emotional at times when i think of everything. Normally i get a grip on things and just get on with it, but about twice per day now i tend to go through a moment of feeling sorry for myself and end up a bit teary. I think it's the fact that it's taken so long for a doctor to finally take me seriously and i thought it would be a simply thyroid issue and not the adrenal and pancreatic issue thrown in. Also it's likely beginners fear, fear of the unknown and not knowing what to expect and not wishing to simply leave things in the hands of doctors, eventhough i have a fantastic one.

Look forward to reading more of your posts, thanks again

Hi Osteo hope you are doing well despite the thyroid issues.

 
Old 04-22-2008, 06:27 AM   #8
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Re: Thyroid care concerns around the world - week 2

Welcome to our dysfunctional thyroid FAMILY Audrey! You are never alone. Pop in here at the low points. I have them as does everyone else. It helps to think ahead and try to ignore the hair clogged drains and other issues. Finding things to do and focus on other than the propblem helps me. This board is a big outlet in that regard. i can focus on others. My five year old son is another outlet. My hobbies etc. I am not as active as I once was and I am literally breaking down, but I refuse to give up and be beaten. It is the only way to be in my opinion.

Osteo, I did the TT versus PT versus subtotal T a while back for my Aunt and mom. One of the more recent surgical studies is, "Total versus subtotal thyroidectomy for the management of benign multinodular goiter in an endemic region." By Colak T, Akca T, Kanik A, Yapici D, and Aydin S. A public abstract is available at [url]http://www.ncbi.nlm.nih.gov/pubmed/15550086[/url]

The conclusions they find is: a total thyroidectomy can be performed without increasing risk of complication, and it is an acceptable alternative for benign multinodular goiter, especially in endemic regions, where patients present with a huge multinodular goiter. There was a 2% difference in chance of hypoparathyroidism in patients undergoing this procedure. The main difference was TT's on average stayed an extra day in the hospital. Upside no need to come back for a second surgery.

Another thing of interest to look into is an MD that can perform "Routine Parathyroid Auto-Transplantation During Subtotal Thyroidectomy For Benign Thyroid Disease". This is the title of an article you should search for..

So.. If I get the offer mine is coming out. Only you can make your choice. So research the MDs that would do this surgery, ask them what they would do if they were you.. or you were their mom. Then choose. It is all we can do. Make a choice and hope it is the right one.

MG
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Last edited by mkgbrook; 04-22-2008 at 06:32 AM.

 
Old 04-22-2008, 01:21 PM   #9
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Re: Thyroid care concerns around the world - week 2

Hi MG how are you, on the subject of hashi's i am yet to find out if i have it and yes you are such a big help on the boared to everyone,these post are really a good idea so we can read through everyones to see if we have things in common and we can get good info to help us help ourselfs and i think that was so nice of you to take the heading MG's thyroid school from Apple i have read some of her post in the past and saw the one where she said that to you and you well deserve it you put a lot of time and effort in thanks kassikoo xx

 
Old 04-22-2008, 01:58 PM   #10
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Re: Thyroid care concerns around the world - week 2

Your welcome. This site is just a way to use technology to its fullest to get the information out and help and support each other. I get just as much out of it as you all. I am just glad I am in a position to help.

MG
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Old 04-22-2008, 02:32 PM   #11
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Re: Thyroid care concerns around the world - week 2

One more neat fact. Let us not forget our lunula's.. the little moons on our finger nails. I am back to hypoT and I am watching my lunula's lighten and shrink on a daily basis. The body can tell you so much.. you just have to be willing to listen to it.

MG
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Old 04-22-2008, 06:40 PM   #12
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Unhappy Re: Thyroid care concerns around the world - week 2

I have no lunula's. not even on my thumbs.

 
Old 04-22-2008, 06:59 PM   #13
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Re: Thyroid care concerns around the world - week 2

Quote:
1) Hashimoto's is know for thyroid flares, oscillations between hyperT and hypoT states. Some MDs referr to this as Hashitoxicosis.. others say Hashitoxicosis is having Graves and Hashimoto's disease. What Hashitoxicosis means is you have hyper and hypo thyroid episodes and medicating will be a constant adjustment issue.
Gahhhhh...yet another reason to drop my endo. I asked her about swinging between hypo and hyper and what it would mean for my treatment if the hyper symptoms came back. She said that doesn't happen in Hashimoto's!

Strike 2 on selecting a doc from Mary Shomon's "Top Docs" list. Never again

Thank you for all the information. I read every night till my eyeballs just about fall out, and plenty of that is here on this board. I wonder if you know how much hope and help you give to people...I hope you do. And I hope it all comes back to you in many wonderful ways

 
Old 04-22-2008, 08:04 PM   #14
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Re: Thyroid care concerns around the world - week 2

Your welcome and I am glad this thread is helping. Finding the right MD is difficult you get more lemons and making lemonade is sour. What city and state are you in? My MD/Ph.D came back with an Endo in Alabama for me. Elizabeth Ennis of Birmingham. I can not give a personal referral of her yet.. but I will make an appointment after seeing my IM next friday.

I got my IM off the Armpour thyroid physican locator database. Her group was the only one in the area on it. This doesn't mean she is the only one that could treat me in town. But she was the 6th in a line of duds and has done wonderfully. I made sure to question my other MDs about who they would send me to and it was always another state or town or Dr. Jeffery Jump's practice. Word of mouth, knowledge, and luck. Persistance is a must in getting proper treatment. If I wasn't as physically compromised with this endocrine mess as I am I would go and become and Endocrinologist and make waves.

I am glad I could help. The Hashimoto's your MD is probably used to seeing is after the thyroid is completely obliterated and anihilated. At that stage there are no hyper swings. No thyroid to kill no hyperT swings. So many are made to wait and suffer and people do not bother to start looking at the thyroid until 40 or later. You have to scream, kick, and bite to get noticed before then. I cringe when I think of how many pregnant women and post pregnancy women suffer needlessly, because an MD refuses to listen and blames it on baby blues.

Ask the MD what happens mechanistically when the thyroid tissue us destroyed? How does this affect the surrounding thyroid tissue and your T4 and subsequent T3 levels? Humm? I would love to be a fly on the wall and watch her body language and verbal response. Nothing like a chemist to make them run in circles. The answer is inflammation and swelling of the thyroid.. which results in the lump in the throat throbing ache.. and an instant dump of retained T4 which is quickly converted into T3 in order for a quick burn off of excess T4. Over conversion of T4 to T3 kicks in out of an ingrained survival response. T3 has a much shorter life than T4. Thus hyperT effects can be channeled and expediated in this manner. Having a higher T3 than T4 level is common early on... and can become permanent if antibodies go after the adrenals in a polyendocrine attack regime.

Keep fighting. I just went hyperT again after a few days of hypoT. WHee! Nothing like a day shift from hyperT to hypoT. So unless I have Graves.. it is my 2000 some odd TPOAbs and TGAbs having a thyroid party!

MG
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Old 04-22-2008, 09:54 PM   #15
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Re: Thyroid care concerns around the world - week 2

I am in Baltimore, MD. I checked the Armour database and one of the first results was the first doctor's office I went to with the ignorant PA (I'd even asked on the phone beforehand if she was good for thyroid issues and was assured she was...ha!). Eeek. I'll make a few calls to others on that list and see what I can ascertain over the phone before making an appointment. I am tired of throwing precious money at closed-minded/ignorant practitioners.

Your antibodies are sky high, wow! Some party Best of luck with the new endo when you see her. I hope she is open-minded and progressive in her learning, and helps you greatly.

If I wasn't as physically compromised with this endocrine mess as I am I would go and become and Endocrinologist and make waves.

I would LOVE to see that!

 
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