ferritin tags

Good or inte­res­ting news is kinda slack right now.

But last week, the ombuds­man of the FDA’s  Cen­ter for Drug Eva­lua­tion and Research (CDER), came out with their 2009 report that I found inte­res­ting. The Ombuds­man are those who receive and impar­tially look at any com­mu­ni­ca­tions from patients to the FDA about medications.

On the fourth page, you find this under the hea­ding Drug Shor­ta­ges: Desic­ca­ted Natu­ral Thy­roid does not have FDA appro­val and it’s avai­la­bi­lity became quite limi­ted in 2009. Many con­su­mers com­plai­ned to the ombuds­man because of their pre­fe­rence of desic­ca­ted natu­ral thy­roid as thy­roid repla­ce­ment medi­ca­tion over the FDA appro­ved synthe­tic versions.

Of course, the above gives a poten­tially false impres­sion that the shor­ta­ges were due to the lack of FDA appro­val – and rea­sons for this stu­pi­dity con­cer­ning “FDA-approval” are explai­ned here.

To the con­trary, last years shor­ta­ges may be explai­ned by pro­duc­tion issues with the North Ame­ri­can pro­du­cer of desic­ca­ted thy­roid pow­der, as well as demand being grea­ter than supply thanks to patients fin­ding out about the supe­rio­rity of desic­ca­ted thy­roid over T4-only meds like Synth­roid.  The STTM web­site and book is wor­king, as are nume­rous good patient groups and forums!

But the above reveals that they are hea­ring thy­roid patients speak.

So with this being a somewhat silent period, wai­ting to see when the FDA will require RLC (Natu­reth­roid) to do ridi­cu­lously expen­sive cli­ni­cal trials to prove what patients have already known for 110 years–that desic­ca­ted thy­roid is safe and effec­tive–it can be a GOOD time to con­ti­nue com­mu­ni­ca­tion with the FDA. How? By repor­ting YOUR EXPERIENCE AND PROBLEMS with T4 for their 2010 report next year. i.e. it will serve to cement why so many did call to state their pre­fe­rence. Here’s how:

• Call or fax them and report what hap­pe­ned to you on T4: 1 – 800-332‑1088
• Fill out their form: http://www.fda.gov/downloads/Safety/MedWatch/DownloadForms/UCM082725.pdf and fax or mail to Med­Watch; 5600 Fishers Lane; Rock­vi­lle, MD 20852 – 9787
• Con­tact the FDA rep for your state: http://www.fda.gov/Safety/ReportaProblem/ConsumerComplaintCoordinators/default.htm

If you had depres­sion or other psycho­lo­gi­cal issues while on T4, report it.

If you have rising cho­les­te­rol, low ferri­tin, and/or low B12 because of T4, report it.

If you had dry skin or hair, diges­tive issues, or aches and pains, report them.

If the qua­lity of your life was lowe­red on T4, report it, out­line it, detail it.

If you got adre­nal stress because of being on T4, unders­core that lousy truth to them.

I am amazed.

The Society for Endoc­ri­no­logy in the UK recently repor­ted that taking higher doses of thy­ro­xine (which will lower the TSH lab result) may be safer than has been pur­por­ted for decades.

And how low a TSH lab result did they find to be safe? As low as 0.04 – 0.4, the research found, is still safe enough to not cause an inc­rea­sed risk of  “heart disease, abnor­mal heart­beat pat­terns and bone frac­tu­res”, aka HYPERthy­roid symp­toms.

And those of us world­wide who know about the supe­rio­rity of natu­ral desic­ca­ted thy­roid can also use these research results in our fight to be on enough desic­ca­ted thy­roid with TSH-obsessed doc­tors, who view research as the end-all to the truth rather than solid cli­ni­cal pre­sen­ta­tion, sadly. Because when we are on enough desic­ca­ted thy­roid to feel fabu­lous again with all symp­toms remo­ved (in the pre­sence of good cor­ti­sol levels, ade­quate ferri­tin, B12 and diges­tive issues), our TSH lab result is always low, aka sup­pres­sed, and without one iota of hyper symptoms.

Patients have expe­rien­tially known this truth about the lousy TSH lab test, without research, for years!

But here’s what’s mis­sing from their research:

1. Those “safe, low levels of an “ink spot on a piece of paper” do not mean the 16,426 patients they follo­wed will be without nume­rous issues rela­ted to being on a sto­rage hor­mone.  i.e. the body is not meant to live for con­ver­sion alone! A healthy thy­roid will con­vert T4 to the active T3, but it will also pro­vide direct T3 in addi­tion to the T2, T1 and calcitonin…none of which a T4-only med pro­vi­des directly.
2. Addi­tio­nally, the TSH lab test only reveals the action of a pitui­tary mes­sen­ger hor­mone called the Thy­roid Sti­mu­la­ting Hor­mone (TSH).  The lab test does NOT mea­sure whether your tis­sue is recei­ving enough thy­roid hor­mone, which is why so many patients on T4 end up with depres­sion, rising cho­les­te­rol, high blood pres­sure, low B12, low ferri­tin and many symp­toms, as well as adre­nal fati­gue thanks to the ina­de­quate treat­ment of T4.
3. Rai­sing T4 often encou­ra­ges an excess pro­duc­tion of Reverse T3 over time, which will block cell recep­tors and inc­rease the very symp­toms the researcher state is avoi­ded, as well as far more hypothy­roid symptoms.

But on the posi­tive side: this is just one more research study that ends up being on our side in our quest in teaching our doc­tors about far bet­ter treat­ment pro­to­cols. I have also inc­lu­ded men­tion of this study on the follo­wing page on STTM, where I keep a ongoing list of  research which sup­ports what patients already know by their expe­rience and cli­ni­cal pre­sen­ta­tion:  http://www.stopthethyroidmadness.com/medical-research/

I’ve been dis­trac­ted the past week, having to do exten­sive research and tra­ve­ling to find the per­fect “new used car”.

Then I caught a cold from hell – rare for me.  I was taking zinc and Vit. C. But a good friend remin­ded me about Vit. D and it’s immune enhan­cing effect. OMG, I for­got about it!  So later last night, I took what I thought was 12,000 IU on the first night of being sic­ker than a dog.  They say to take 1000 mg per 10 lbs of weight. Tur­ned out the gel caps were not 1000 IU each, as I thought, but 2000 IU each. So I ended up taking 22,000 IU.  lol. But the long and short of it is this: though I woke up this mor­ning quite tired and weak, I’ve slowly got­ten bet­ter all day!! My con­ges­tion has hugely impro­ved.  Read this: http://pandemicsurvivor.wordpress.com/2009/11/28/eliminate-the-common-cold/

Love your green pow­der drink? Just a word of cau­tion: much of what is in many of those pow­de­red greens are goi­tro­gens, which inhi­bit thy­roid pro­duc­tion, such as wheat grass, bar­ley grass, broc­coli, spi­nach,  cab­bage, maca and spi­nach, plus much more. But that doesn’t mean you can’t use the green pow­der. You’ll just have to be sure to use it in mode­ra­tion, and not con­sume too many other goi­tro­gen foods each and every day. Or, raise your thy­roid meds.

Dr. Peter Gott can give even bet­ter infor­ma­tion to rea­ders. I noti­ced that a column on the Tulsa web­site by Peter Gott, MD of the News­pa­per Enter­prise Asso­cia­tion  could have given dif­fe­rent infor­ma­tion to a dis­tres­sed rea­der who couldn’t find Armour anywhere.  He recom­men­ded to this rea­der, who already sta­ted that Synth­roid is not a well-handled treat­ment, to see if her phy­si­cian could “alter the Synth­roid dosage to find a level”  that could be tole­ra­ted.  Actually, there are far bet­ter options during this bac­kor­de­red time, which I have com­pi­led here, and inc­lu­des Erfa’s Thy­roid and more.

Natu­reth­roid is appea­ring in phar­ma­cies! Yup, patients are repor­ting it! No, it’s not all phar­ma­cies. But you might want to call and see if YOUR local phar­macy has it. Other­wise, it’s coming.  For options during the current natu­ral desic­ca­ted thy­roid shor­ta­ges, go here. To see why we are where we are today, read this.

Is there research to prove having a free T3 in the upper quar­ter of the range when on desic­ca­ted thy­roid?? A gal emai­led me, wan­ting stu­dies to show her doc. But unfor­tu­na­tely, the ans­wer appears to be no. Ins­tead, this is what patients all over thy­roid groups dis­co­ve­red from their lab results when they were fee­ling fabu­lous again with no lin­ge­ring symp­toms.  So we simply spread the word. Patient expe­rien­ces DO count for something.  P.S. Here’s an ongoing list of research that DOES prove some things patients KNOW first hand.  And by the way, when you have a high free T3 and con­ti­nuing symp­toms, time to do labs for ferri­tin and adre­nal fati­gue.

By using a code, you can save on labs from Healthchec­kUSA. I was infor­med from Healthchec­kUSA that many patients were for­get­ting to men­tion the dis­count code. So look again, and be sure and use it from the Recom­men­ded Lab­work page.

Janie on radio shows, and a great guest for the upco­ming Talkshoe Thy­roid Patient Com­mu­nity Call. Can’t say much more, because it’s in the works. Watch for announ­ce­ments soon.

A new way to be infor­med of these thy­roid posts. The for­mer Noti­fi­xious noti­fi­ca­tions went out of busi­ness. But we have a new and GOOD one, refe­rring to the noti­fi­ca­tion as a new­let­ter, and you can sign up free and with no strings attached.  See on left below on the links.   Also, there are many more impor­tant posts right below this.

Seve­ral years ago, a large per­cen­tage of thy­roid patients on yahoo groups like NTH were figu­ring out that they had adre­nal fati­gue, aka low cor­ti­sol, from years of adre­nals wor­king over­time due to the ina­de­quate TSH lab test, or being on the lousy T4-only medi­ca­tions like Synth­roid, Levoxyl, levothy­ro­xine, Eltro­xin, etc.

Not only does low cor­ti­sol keep desic­ca­ted thy­roid from wor­king well, it also cau­ses all sorts of angst with para­noia, depres­sion, anxiety, easy anger, sen­si­ti­vity to light and/or sounds, rec­lu­si­ve­ness, sleep issues and more.

First, patients dis­co­ve­red the impor­tance of using the 24 hour adre­nal saliva test rather than blood or urine. When low cor­ti­sol was con­fir­med, the treat­ment was using cor­ti­sol, aka hydro­cor­ti­sone, to give them­sel­ves back what their adre­nals were not, to allow thy­roid hor­mo­nes to reach the cells, and to give the poo­ped out adre­nals a rest.

And suc­cess was achie­ved! When all other issues were dis­co­ve­red and trea­ted, patients were finally able to heal their adre­nals with cor­ti­sol use, wean off, and be suc­cess­ful in their con­ti­nued treat­ment with desic­ca­ted thy­roid! That suc­cess con­ti­nues today!

Yet in spite of clear suc­cess in the treat­ment of low cor­ti­sol with sup­ple­men­tal cor­ti­sol in the correct amount for each indi­vi­dual (which can range from 15 to 40 mg gene­rally – men often need the higher end), as well as exce­llent books on the sub­ject by Wil­son, Peat­field, Jef­fries and the STTM book, patients like RD below still encoun­ter doc­tors who fill their minds with all sorts of fear and warnings:

I bought your book and later on I dis­co­ve­red your web­site which are both great. They are a superb source of infor­ma­tion and sup­port for thy­roid and adre­nal fati­gue suf­fe­rers. Thank you so much!

Per­so­nally I got adre­nal fati­gue by a sus­tai­ned lack of sleep for seve­ral years (crying babies).  I found a doc­tor who presc­ri­bed Hydro­cor­ti­sone (17.5 mg/day, 5 – 5-5 – 2.5), Flu­dro­cor­ti­sone, DHEA and Tes­tos­te­rone. Symp­toms disap­pea­red in about 2 weeks.

A first attempt to wean off after 6 months made some serious symp­toms reap­pear very quickly, so I retur­ned to the ori­gi­nal dose.

It is very stress­ful that many esta­blished doc­tors (our family doc­tor, and my wife’s thyroid-endocrinologist) are sca­ring me like hell that I am taking HC. They are saying I am des­tro­ying my body and I will never suc­ceed in wea­ning off HC.

My wife is a T4-only thyroid-patient with low-cortisol symp­toms. She also has been sca­red about des­si­ca­ted thy­roid and HC. Rea­ding your book I was howe­ver con­vin­ced she could bene­fit a lot from a bet­ter treatment…

Keep up the good work, as patients we are really left alone in the dark by our doctors…

And unfor­tu­na­tely, it’s true. Thy­roid and adre­nal patients are left in the dark by many doc­tors about a variety of issues rela­ted to bet­ter thy­roid treat­ment, adre­nal issues, low ferri­tin, and more.  So here’s where you can read more, and in turn, take this impor­tant infor­ma­tion into your doc­tors offices:

• All about the pro­blem of adre­nal fatigue
• How to treat
• Symp­toms of having an adre­nal problem
• The STTM book, which not only has more detail, but can be taken right into the doctor’s office
• Talk to other patients, inc­lu­ding a group tar­ge­ted for adre­nal fatigue

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If you mis­sed the exce­llent Part 2 with researcher Dr. John C. Lowe last Thurs­day eve­nings, you can lis­ten to the recor­ding, as well as sign up to be a Follo­wer of the Thy­roid Patient Com­mu­nity Call, here.

The follo­wing guest blog post is writ­ten by Amy McMu­llen, who had undiag­no­sed & symp­to­ma­tic hypothy­roi­dism for 20 years due to the sole use of the TSH, resul­ting in mul­ti­ple health problems. She is now trea­ting per the gui­de­li­nes on STTM inc­lu­ding T3 for thy­roid hor­mone resis­tance, adre­nal sup­port, and desic­ca­ted thyroid.

I found her story below as an under­co­ver advo­cate fas­ci­na­ting,  and think Amy is caring and com­mit­ted,  in spite of severe res­tric­tions! Bless you, Amy.

I spend an inor­di­nate amount of time these days con­tri­bu­ting to a well-known online thy­roid disor­ders forum I’ll call “Thy­roid Health Forum” (not its real name).

It’s a tricky forum with dra­co­nian rules: they don’t allow you to post any links to resour­ces, talk about where you get your online labs done, inc­lude quo­tes from stu­dies, or post any names of thy­roid advo­ca­tes. You can’t use a user­name you’ve used on any other forums and you can’t men­tion using their per­so­nal mes­sa­ging system.

I’ve recei­ved a few “infrac­tions” from the ever-vigilant board “admi­nis­tra­tors” and “mode­ra­tors” (never could color inside the lines, I guess) and have been war­ned to never, under any cir­cums­tan­ces, use the words “Stop the Thy­roid Mad­ness” or any refe­ren­ces to this web­site or book in my posts.

At more than one point I was ready to walk away and just give up on it.  How can you share your expe­rien­ces when there were so many rules that see­med desig­ned to inhi­bit a free flow of infor­ma­tion, to the point of not being allo­wed to men­tion the title of a good book by name or type in the word Google?

But I would read the follo­wing posts sub­mit­ted by des­pe­rate peo­ple and this would keep me coming back to try, somehow, to help:

• “Hi, my doc­tor says my labs are all nor­mal but I’ve got so many symp­toms, I can hardly function…”
• “My doc­tor says that free T3 and free T4 tes­ting is not use­ful, that my TSH is nor­mal and that unless my TSH is high he won’t order any anti­body tests…”
• “My doc­tor says that my TSH is too low and wants me to cut back on my thy­roid hor­mo­nes, but I know I will start fee­ling bad if I do this… Help!”
• “I am taking Synth­roid but I feel terri­ble and my hair is falling out and now my doc wants me to take an antidepressant…”

You see, I was in this very same boat for far too many years. About 20 years back I star­ted noti­cing symp­toms:  fati­gue, depres­sion, mens­trual irre­gu­la­ri­ties, and dizzy spells. I went to see my doc who did the usual TSH test and when it came back “nor­mal”, presc­ri­bed anti­de­pres­sants. The anti­de­pres­sants did help, but my mens­trual pro­blems inten­si­fied and other symp­toms inc­rea­sed until I finally under­went a hys­te­rec­tomy for dys­func­tio­nal ute­rine blee­ding. Shortly the­reaf­ter, I collap­sed with heart irre­gu­la­ri­ties and auto­no­mic ner­vous sys­tem dys­func­tion in the fall of 2006.

I went to over 10 dif­fe­rent spe­cia­lists spen­ding thou­sands of dollars for medi­cal bills with no real ans­wers – just a lot of shrug­ged shoul­ders and a fibrom­yal­gia diagnosis.

It wasn’t until my mother was hos­pi­ta­li­zed and rou­tine blood tes­ting came back with a TSH of over 6 that I loo­ked again at my own thy­roid. My TSH was never above 3. I had one free T4 test done follo­wing my ini­tial collapse but, again, all tests were flag­ged “nor­mal” and thy­roid was pas­sed over once again.

But a search about TSH lab ran­ges led me to Mary Shomon’s About.com artic­les, and while she see­med to be stuck on the idea that 3 was an accep­ta­ble num­ber for the top of range for TSH, based enti­rely on the Ame­ri­can Asso­cia­tion of Cli­ni­cal Endoc­ri­no­lo­gists recom­men­da­tions, I finally found the Stop the Thy­roid Mad­ness site and lear­ned otherwise.

It was here that I lear­ned about other tes­ting like free T3, free T4, thy­roid anti­bo­dies, vita­min and ferri­tin levels and, very impor­tantly, that the TSH should be the LAST test done for diag­no­sing hypothy­roi­dism ins­tead of the ONLY test. I finally caught on to how the medi­cal esta­blish­ment has fai­led mise­rably to ade­qua­tely diag­nose and treat hypothy­roi­dism. I felt both inc­re­dibly empo­we­red and very, very angry.

I quickly del­ved into the thy­roid forums to share what I’d lear­ned and to learn from others. The first forum I found was the afo­re­men­tio­ned  “Thy­roid Health Forum”, and since this is one of the best-known, it is where many of the new­bies, like me, find them­sel­ves. There were both natu­ral and synthe­tic hor­mone pro­po­nents on the board and the advice ran­ged from very good to quite bad. I soon found there were bet­ter forums like Realthy­roidhelp and the natu­ral thy­roid hor­mone Yahoo groups that had really smart peo­ple who were happy to share resour­ces and infor­ma­tion that was truly use­ful. I spent a lot of time on these and lear­ned a great deal.

But for some rea­son I couldn’t seem to leave the “Thy­roid Health Forum”. The peo­ple who stum­bled on there see­med so lost and I felt com­pe­lled to impart what I had lear­ned to them. I would offer alter­na­ti­ves to the synthe­tics and explain why natu­ral desic­ca­ted thy­roid (NDT) was a supe­rior treat­ment option and, more impor­tantly, that they did have an option for their treat­ment, des­pite what their doc­tor told them. I’d relay what I had lear­ned from other boards about access to NDT during the shortages.

When I figu­red out I had adre­nal fati­gue and later thy­roid hor­mone resis­tance as a result of being undiag­no­sed for so long, I star­ted rela­ying infor­ma­tion about these issues to the many who were having dif­fi­cul­ties get­ting opti­mi­zed on their hor­mone repla­ce­ment the­rapy. I found it to be both rewar­ding and enor­mously edu­ca­ting for myself as I would spend time researching ques­tions that were asked about sup­ple­ments, lab tests, and stu­dies. I was not allo­wed to post links so had to sum­ma­rize things I had lear­ned and this taught me even more. The main mes­sa­ges I pushed were (and are):  get the right labs done, learn how to inter­pret them correctly, be your own advo­cate, know your treat­ment options, and don’t impli­citly trust doctors.

I will con­ti­nue to con­tri­bute what I’ve lear­ned to the “Thy­roid Health Forum”. So far I’ve mana­ged to fly under the radar and play, howe­ver grud­gingly, by their rules. I figure if I can get just one or two peo­ple to ques­tion the pre­sent thy­roid cli­ni­cal gui­de­li­nes, as writ­ten by our friends at big pharma, I’ll be more than satis­fied. I actually believe that by get­ting good infor­ma­tion out there to as many suf­fe­rers as pos­si­ble, we may create a grounds­well of peo­ple who will no lon­ger accept being dis­mis­sed as depres­sed com­plai­ners by their health­care pro­vi­ders. And this is one more way we can help enact real change to the currently abys­mal medi­cal prac­tice of thy­roid diag­no­sis and treat­ment. Well worth it in my book!

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Latest news from RLC: Ship­ments of Natu­reth­roid are begin­ning Mon­day, January 4^th and the first two weeks with bac­kor­ders going out ASAP.  Medco should have some by the end of January. Their Patient Infor­ma­tion Line: Naturethroid/Westhroid: 877 – 600-4752

Thy­roid  patient guest posts can be read about here: /writing-a-guest-blog-post-on-sttm/

Want to honor someone who has hel­ped you?? See the blog post below and thank someone.

NOTE: if you were recei­ving email noti­fi­ca­tions about these posts,  the com­pany doing them is out of busi­ness. Ins­tead, use an RSS Feed.