thyroid patients tags

Thy­roid tid­bit #1 COCONUT OIL: Thy­roid patients con­ti­nue to report that the daily use of Coco­nut Oil (extra vir­gin is good) cau­sed an inc­rease in meta­bo­lism and even weight loss in  somewho wan­ted the lat­ter. How much daily? It varies from 2 – 4 T. but be care­ful, as too much can cause diarrhea. 

Thy­roid tid­bit #2 GRASS FED DESICCATED THYROID: Are you worried what the pigs were eating before the thy­roids became desic­ca­ted?? If so, try Dr. Lowe’s Thyro-Gold, which is actually from cow who are pasture-fed. Then report back to STTM on the Con­tact Me page and tell us how it works for you as a treat­ment, or not work. I will com­pile infor­ma­tion and report it here.

Thy­roid tid­bit #3 ALZHEIMERS DISEASE: Impro­ving your thy­roid func­tion just may les­sen your chance of get­ting demen­tia. But research has also found a Lep­tin con­nec­tion: http://www.webmd.com/alzheimers/news/20091215/more-leptin-may-mean-less-alzheimers

Thy­roid tid­bit #4: ASHWAGANDHA: If you have slug­gish adre­nals and are on cor­ti­sol, adding the herb Ash­wa­gandha can be an exce­llent and natu­ral addi­tio­nal sup­port for your adre­nals. Even without adre­nal fati­gue, it’s also good in the face of excess emo­tio­nal stress, and is an anti-inflammatory.

Thy­roid tid­bit #5 REVERSE T3 – IS YOURS TOO HIGH? The body natu­rally con­verts T4 to RT3 as a way to clear out excess T4. But you can also make too much when your ferri­tin is too low, your adre­nals are stres­sed, B12 is low, in the pre­sence of dia­be­tes, and other chro­nic issues. High levels of RT3 can cause a poun­ding hear­trate, con­ti­nued hypo, and just a fee­ling that you aren’t fee­ling great yet. To learn more, go here.

Thy­roid tid­bit #6 BI-POLAR: Have you been diag­no­sed with bi-polar disease? If so, you might want to do the right tests for hypothy­roi­dism, since there can be a strong con­nec­tion bet­ween the two, and you can either be undiag­no­sed thanks to the wrong test, or under­trea­ted thanks to Synth­roid, Levoxyl, Eltro­xin or other T4-only medi­ca­tions. Read more here plus more detail in the STTM book.

Thy­roid tid­bit #7 GREEN POWDER and CHOCOLATE: Don’t like green veg­gies but want to be healthy? Look into the dif­fe­rent varie­ties of “Green Pow­der” that you can stir into your favo­rite juice or water. Read the labels, tho, and avoid those with soy. Like cho­co­late?? They now make CHOCOLATE FLAVORED GREEN SUPERGREEN POWDERS and I am a huge fan. Just goo­gle what is all in caps before this.

Thy­roid tid­bit #8 YOUR GRANDMA: Thy­roid func­tion will natu­rally go down­ward in the elderly.That’s why grandma starts wea­ring that pur­ple swea­ter in weather you are swea­ting in.  But put­ting those over 65 on T4-only thy­ro­xine is not the ans­wer, as a recent study sho­wed.  That’s why YOU AND I are lucky to be on desic­ca­ted thy­roid with its direct T3, or even those of you who are on T3 only.

Thy­roid tid­bit #9 EGGS ARE A BIT SCARY RIGHT NOW: Not neces­sa­rily for thy­roid folks only, but you should be aware that with the recent recall of huge amounts of eggs in the US, there are reports of a four-fold inc­rease in Sal­mo­ne­lla Ente­ri­ti­dis infec­tions since May 2010 because of eggs and health offi­cials fear the worst may be yet to come. Why? Because the same eggs have been used in other pro­ducts. Scroll down this page to see list of reca­lled eggs. P.S. if you get sal­mo­ne­lla and are on cor­ti­sol for adre­nal fati­gue, you should dis­cuss with your doc­tor about using OTC cor­ti­sol cream, since you may not be able to hold down the pills. 1/4 tsp equals 10 mg cortisol.

Thy­roid tid­bit #10 FLU SHOTS vs. VITAMIN D: Just when you are making pro­gress trea­ting your hypothy­roi­dism and/or adre­nal fati­gue comes the sea­son for the flu. And if you goo­gle the same same title of this tid­bit, you’ll see nume­rous artic­les about the effi­cacy of taking Vit. D rather than the flu shots.  How much? Gene­ral recom­men­da­tion are 1000 IU’s daily at the mini­mum. Others point to more. Do your research.

A patient recently repor­ted on Face­book that a par­ti­cu­lar large and well-known health cen­ter in Texas deci­ded to make their own com­poun­ded natu­ral desic­ca­ted thy­roid for their hypothy­roid patients…with cellulose.

Having read my blog posts about wides­pread nega­tive patient expe­rience with cellu­lose, she told the phar­macy that many of us have noti­ced dis­tinct pro­blems with the addi­tion of cellu­lose in our desic­ca­ted thy­roid medi­ca­tions – exactly why the newly for­mu­la­ted Armour cau­sed too many patients to see a return of their hypothy­roid symp­toms. Natu­reth­roid has not esca­ped the same fate for some.

When she asked if they could remove the cellu­lose, she recei­ved a firm and con­des­cen­ding “No” from the phar­ma­cist, refe­rring to cellu­lose as “a com­mon ingre­dient in many medi­ca­tions and not a problem.”

Not a pro­blem? Once again, patients are dis­mis­sed as if we couldn’t pos­sibly know what works, and what doesn’t work, in our treat­ment and in our own bodies. A sha­me­ful rea­lity. She left disap­poin­ted. 

What is cellu­lose? Cellu­lose is the most com­mon orga­nic subs­tance found on our pla­net – a fiber abun­dantly found in plants and trees, and most espe­cially in cotton.

Where is cellu­lose used? You wear it and you write on it! You eat it when you con­sume celery, pota­toes, or mush­rooms. It’s used to sta­bi­lize and thic­ken pro­ces­sed foods, and may be found in many chee­ses, dry milk, pud­dings, and more. And since it’s dif­fi­cult to find anyone aller­gic to wood, it’s been a com­mon ingre­dient in medi­ca­tions, used as a filler.

So where’s the pro­blem for thy­roid patients?

1. Unlike the happy cows in their pas­tu­res che­wing their cuds, human sto­machs  have a limi­ted abi­lity to break cellu­lose down. Cellu­lose is a fiber. And what does fiber do? It “binds”. It binds to the desic­ca­ted thy­roid that has gone down with it.  i.e. the life-changing effects of desic­ca­ted thy­roid are clearly dam­pe­ned by the pre­sence of cellu­lose. Our “expe­rience” has revea­led it all across the globe since Armour was refor­mu­la­ted with an inc­rease of cellu­lose in the mix.  i.e. we have wit­nes­sed a mas­sive return of hypothy­roid symp­toms on the newly for­mu­la­ted Armour, and to some degree, on Natu­reth­roid, whether the lat­ter switched to mic­rocrys­ta­lline cellu­lose or not (as com­pa­red to the lar­ger celled methylcellulose).
2. Hypothy­roid patients do not digest well. As one of many com­pli­ca­tions of hypothy­roi­dism,  espe­cially due to the ina­de­quate treat­ment of T4-only medi­ca­tions and poor diag­no­sis from the TSH lab test,  low sto­mach acid and poor diges­tion is COMMON in hypothy­roid patients.  So when you add cellu­lose to the mix, you are further dam­ning thy­roid patients.
3. Though not spe­ci­fic to just thy­roid patients, we are not too com­for­ta­ble with fin­ding out that cellu­lose can collect in our lungs, as revea­led in pub­med artic­les here and here.  (Thanks to thy­roid patient Danny for aler­ting me to this.)

Bot­tom line, desic­ca­ted thy­roid is a qua­lity and supe­rior treat­ment medi­ca­tion which has chan­ged the lives ten-fold for thy­roid patients around the world.

But cellu­lose and desic­ca­ted thy­roid DO NOT MIX. And BRAVO to those com­poun­ding phar­ma­cies who have lis­te­ned and have used the bene­fi­cial pro­bio­tic aci­dophi­lus as a filler. We appre­ciate you.

P.S. I abso­lu­tely loved this com­ment made by another patient on Face­book when we were dis­cus­sing the grief of taking our last pre-formulated Armour: Would love to get my hands on some old Armour again.…those were the days my friends…

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Want to know your options for bet­ter thy­roid treat­ment?? Go here.

Need help fin­ding a good doc­tor? Go here.

Think desic­ca­ted thy­roid didn’t work for you?? Go here.

See com­mon Ques­tions and Ans­wers here.

I am plea­sed to note that Mary Sho­mon of about.com,  who in her blog post on Thurs­day, April 22, 2010, has not only sof­te­ned her wor­ding about self-treatment by hypothy­roid patients, but has also writ­ten expres­si­vely con­cer­ning surroun­ding issues. These are also issues which I pre­sen­ted in two blog posts ear­lier this week con­cer­ning the immense pro­blem with doc­tors as expres­sed by patients, and self-treatment.

Good for Mary!

As wit­nes­sed by Sheila Turner’s exce­llent edi­to­rial towards those who cri­ti­cize self-treatment, as well as angst expres­sed by many patients toward those who cri­ti­cize,  self-treatment is an impor­tant issue and can’t be dilu­ted down as simply “self-destructive” in our current medi­cal climate.

The follo­wing are dif­fe­ren­ces in how this is vie­wed, though, with one com­mon thought:

• Is self-treatment one  of the “most con­tro­ver­sial” issues with thy­roid patients? The ans­wer is “only to those who make it so”. Far more trou­bling to thy­roid patients is a medi­cal esta­blish­ment which worships a medi­ca­tion which has left millions under­trea­ted, and which makes a pitui­tary hor­mone lab called the TSH as if it’s from God Almighty. Equally as trou­bling to patients are doc­tors whom they report as con­des­cen­ding, close-minded, robo­tic, and/or igno­rant about issues that keep thy­roid patients sick – low ferri­tin, adre­nal fati­gue, and more. Self-treatment is only the symp­tom of a much lar­ger, more con­tro­ver­sial problem.
• Does self-treatment have “obvious draw­backs” for thy­roid patients who feel for­ced to do it? The ans­wer is “yes”, but no dif­fe­rent and pro­bably far less than the “obvious draw­backs” patients face with clue­less doc­tors.  The com­ments on my blog posts are bloa­ted with patients who have been left sick, or made sic­ker, by one doc­tor, after another doc­tor, after one more.  It’s not a pretty picture.
• Is there a “risk of under­treat­ment” for thy­roid patients who self-treat? Yes, but pro­bably far less  than the huge num­ber of patients who report being left “under­trea­ted” by doc­tors who are blind to the pro­blems of T4, or doc­tors who remain clue­less about the ina­de­quacy of trea­ting by the TSH.
• Is the “grea­test con­cern” about self-treatment the pro­blem of being “over-medicated”? You betcha. But in the vast majo­rity of these unfor­tu­nate cases with patients who choose to self-treat, the pro­blem is undiag­no­sed or under­trea­ted low cor­ti­sol and/or low ferri­tin, which results in thy­roid hor­mo­nes poo­ling in the blood and crea­ting hyper-like symp­toms.  This is a risk for self-treatment.
• Have “dozens of thy­roid patients” ended up in emer­gency rooms due to over-medication? “Dozens” is spe­cu­la­tion.  It may be more rea­lis­tic to state that “some”, yes, have sta­ted this unfor­tu­nate out­come when they made the choice.  But research and com­ment all over the inter­net shows anyone that hun­dreds of thou­sands of all patients can end up in the emer­gency room due to poor doc­to­ral deci­sions, or bad reac­tions to phar­ma­ceu­ti­cal medi­ca­tions which doc­tors love to presc­ribe. Ending up in an emer­gency room is not solely con­nec­ted to self-treatment.
• Do “patients face many major obs­tac­les that pre­vent them from get­ting accu­rate and effec­tive thy­roid diag­no­sis and treat­ment?” Yes! That is where Mary is in agree­ment with me with her six exce­llent  points, inc­lu­ding the tra­gic situa­tion in the UK. And here are 10 rea­sons patients are frus­tra­ted, angry and sick.
• Has one nega­tive jour­nal article about someone who self-treated “resul­ted in desic­ca­ted thy­roid  get­ting grea­ter scru­tiny by the FDA?” The ans­wer can easily be:  no worse than the body of patients who were made fear­ful that the FDA was ban­ning desic­ca­ted thy­roid, and who follo­wed a strong cam­paign to con­tact the FDA about desic­ca­ted thy­roid. I was also per­so­nally told by two phar­ma­ceu­ti­cal repre­sen­ta­ti­ves that this action to con­tact the FDA made the pharms very uncom­for­ta­ble and put too much atten­tion on desic­ca­ted thy­roid. Time will tell, but it’s not help­ful to blame anything.
• Does “acti­vely pro­mo­ting self-medication” with natu­ral desic­ca­ted thy­roid “work against thy­roid patient inte­rests”. The ans­wer to this loa­ded ques­tion resi­des in who you ask. Whether “acti­vely pro­mo­ted” or simply “read about”, there seems to be a body of patients who report that fin­ding out about desic­ca­ted thy­roid, and fee­ling for­ced to self-treat because of not fin­ding any doc­tor to help them, was one of the best deci­sions they ever made.

And to the last com­ment above, and since there have been “impli­ca­tions”, I want to unders­core (and ad nau­seum) that the patient-to-patient Stop the Thy­roid Mad­ness was not crea­ted as a self-treatment site, nor does it “acti­vely pro­mote” it.  STTM is a site with a goal to edu­cate patients who can, in turn, take that infor­ma­tion into their doc­tors offi­ces and push for change. And it’s been wor­king, one doc­tor at a time, as wit­nes­sed by patients who report those doc­tors on patient groups, and by emails I get from some of those doctors.

But it’s also clear that those who self-medicate may be using STTM, as well as many other web­si­tes and books out there by doc­tors, advo­ca­tes and non-professionals alike, to help them. So at least there is edu­ca­tion out there to help those who choose this, even if none was crea­ted for that purpose.

Sum­mary

There are impor­tant dif­fe­ren­ces in opi­nion, and much more to the story as I out­li­ned above.

But the bot­tom line is this: for up to 60 years, hun­dreds of millions of thy­roid patients around the world have been sub­jec­ted to

1. a medi­ca­tion called thy­ro­xine which has left a heap of lin­ge­ring hypothy­roid symp­toms,
2. a new debi­li­ta­ting con­di­tion like adre­nal fati­gue,
3. a lab test (TSH) which has dela­yed diag­no­sis for years or kept patients under­trea­ted, and
4. too many doc­tors who aren’t up to speed about most any of this, and have left patients frus­tra­ted, angry and still sick.

And all the above is a far worse sce­na­rio which only pushes some patients to self-treat as a side-effect. But if  you aren’t totally wiped out finan­cially and emo­tio­nally in trying to find an infor­med doc, two sug­ges­tions: http://www.stopthethyroidmadness.com/how-to-find-a-good-doc as well as pos­ting your city/state in the sub­ject line of patient groups here: http://www.stopthethyroidmadness.com/talk-to-others

P.S. Please note that you will never see this blog, or this web­site, kno­wingly allow non-professional,  nega­tive, nasty, false, abu­sive and/or pro­found slan­der about a collea­gue, as has been done elsewhere.

It’s been about a year since Armour desic­ca­ted thy­roid, a very popu­lar presc­rip­tion natu­ral thy­roid pro­duct on the mar­ket for deca­des, was refor­mu­la­ted. Forest Labs sta­ted there were two chan­ges: the rai­sing of cellu­lose, and the lowe­ring of sucrose.

Why did they do this? It could be strongly rela­ted to the fact that in late 2007 through 2008, patients who used the 3 grain tablets repor­ted they were sud­denly and enti­rely inef­fec­tive. So, many of us sur­mise that Forest was attemp­ting to “improve” (cough) their product.

Says one of those patients:  I had switched to the 3 grain tablet months before to save money and I used my pill cut­ter to cut it in half.  Then around Novem­ber, my work pants were get­ting tight and I would come home tired, achy and weak. It didn’t take me long to figure out that Armour in the 3 grain was now like a sugar pill!

In the mean­time, Forest brought out the newly for­mu­la­ted Armour, & patients who finished their old batch star­ted the new batch. And since then, it appears a large body of patients have run as fast as they could to Natu­reth­roid, or com­poun­ded, or T4/T3 or Erfa. The rea­son: a return of for­mer hypo symp­toms on the “new” Armour.

I have com­ple­ted an infor­mal sur­vey with 24 indi­vi­duals res­pon­ding, and asked the follo­wing ques­tions. After each ques­tion, I give a sum­mary of the answers.

1. How long of doing well occu­rred on the newly refor­mu­la­ted Armour before you star­ted to notice that you weren’t doing well?

Most ans­wers are in the area of 2 – 3 months, with three saying a month, one 4 months, and three sta­ting a few weeks. And com­pa­ring this to com­ments we’ve been seeing for the past year on patient groups, it’s com­mon to feel good at first, but to crash within that 2 – 3 months.

2. What clued you in that you weren’t doing well on the new Armour?

The ans­wers are all over the map: fati­gue and exhaus­tion, hair loss, brain fog, weight gain, slee­ping pro­blems, cons­ti­pa­tion, achi­ness, depres­sion, hor­mo­nal pro­blems, moo­di­ness, dry skin/elbows/thumbs and crac­king skin, fla­king fin­ger­nails, heart irre­gu­la­rity, for­get­ful­ness. Five report skin brea­kouts simi­lar to poi­son ivy.  Fati­gue and hair loss were the most com­mon answers.

3. Did you try rai­sing it? What were the results?

The majo­rity tried rai­sing it, and results were: no results; barely made any dif­fe­rence: more energy but skin was a mess. The majo­rity said nothing hap­pe­ned. Two dou­bled it with no sig­ni­fi­cant results.  Two deve­lo­ped fast heart rate with no impro­ve­ments elsewhere. One had to lower it because of a very low TSH. One sta­ted she rai­sed it to get her labs back up to where they were before…with little impro­ve­ments.  And one said it made her too hot to con­ti­nue rai­sing it.

4. Did you try adding T3 to it? What were the results?

All said no. One said she tes­ted here RT3 ratio and it was 11, which is bad.  One sta­ted she asked her doc­tor for T3; he said no. I’d sure like to find someone who did add T3 who could tell us the results.

5. Did you do anything else to try and make the refor­mu­la­ted Armour work, and did it help?

All repor­ted nothing hel­ped enough.  Many sta­ted their doc­tors tes­ted for other pro­blems, ran­ging from heavy metals, low iodine, B12 – the lat­ter hel­ped one gal’s tin­gling. One sta­ted her doc put her on Apro­to­col for the diges­tive tract which hel­ped the cons­ti­pa­tion but nothing else chan­ged. One added com­poun­ded desic­ca­ted thy­roid to her Armour — it didn’t help. One gal tried Thyro-care, which hel­ped. But she and two others report get­ting a poison-ivy like skin rash on the new Armour.

Currently, we see newly diag­no­sed patients put on the new Armour, and vete­rans can’t help but won­der what will hap­pen to them.

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On my April 17^th blog post, read 10 rea­sons thy­roid patients are still frus­tra­ted, angry and sick. That is follo­wed by the April 19^th blog post Should thy­roid patients avoid self-treatment at all costs, with an inte­res­ting and strong Guest Post by Sheila Tur­ner of TPA-UK and a good follo­wup to the for­mer 10 rea­sons post.

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If you appre­ciate the infor­ma­tion you receive from this patient-to-patient web­site, please con­si­der making a dona­tion to sup­port the hos­ting costs for this Stop the Thy­roid Mad­ness web­site. The icon is on the lower right.

(Note: this is a long post, but will be worth every penny if you read it all!)

When STTM first put out its shin­gle in Decem­ber of 2005 (with most of what you see today going up in ’06 and ’07 with con­ti­nual addi­tions),  my goal with this site was sim­ple: to edu­cate thy­roid patients.

And as I saw it, by edu­ca­ting patients on what we had been lear­ning, patients could in turn, take that infor­ma­tion into their doc­tors offi­ces and push for change. And it’s been wor­king, slowly. We now have more doc­tors than ever before who know about desic­ca­ted thy­roid and are willing to presc­ribe it, even if they are the mino­rity. STTM has a page on how to try fin­ding one of those good docs.

But as I wrote about this fact in my pre­vious post, cer­tain patients can still find them­sel­ves frus­tra­ted, angry and sick because of doc­tors. It’s not a pretty pic­ture for some.

I am lucky, as I’ve always mana­ged to have a fair doc­tor to work with, without com­pli­ca­ted issues. But a lot of patients aren’t as lucky.  They either can’t find a doc­tor to treat them correctly after trying repea­tedly, or they simply can’t afford to keep dri­ving to find a good doc (with no pro­mi­ses that they will get the good doc they des­pe­ra­tely need any­way). As a result, many thy­roid patients report being for­ced to self-treat.

Even though STTM was never crea­ted as a self-treatment site, I am aware that some patients use it that way.  And I can never con­demn them. Gran­ted, a few who make their own choice to self-treat can run into pro­blems, most espe­cially from undis­co­ve­red or undiag­no­sed low ferri­tin or low cor­ti­sol. But it’s a choice they seem to make out of desperation.

The follo­wing  post is by  Guest Blog pos­ter and UK’s thy­roid patient advo­cate Sheila Tur­ner of TPA-UK.  These are her cou­ra­geous thoughts con­cer­ning self-treatment, and her angst against anyone who tells patients not to do so.  Ove­rall, UK patients have a very tough situa­tion in the UK with doc­tors, but so do the vast majo­rity of patients around the world, as well as US patients. See what you think…

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It’s not uncom­mon to be told as a suf­fe­ring and debi­li­ta­ted thy­roid patient to never self-diagnose, never self-treat, never self-monitor.

And in an ideal world, we could take those admo­ni­tions on. But we are not living in an ideal world.

You might as well tell every­body with ill health to put up with wha­te­ver they are suf­fe­ring and leave their health in the safe hands of our ‘won­der­ful’ doc­tors whom we can trust impli­citly.  Sadly, many doc­tors have little (or no) edu­ca­tion in the wor­kings of the thy­roid system.

Or, you might just try tou­ring the country until you find one who will help. Well, if you have the energy and the money to do that, it could take a heck of a long time before fin­ding such a good doc­tor —  indeed, IF you ever find such a doctor.

I run a very suc­cess­ful Inter­net Thy­roid Sup­port group, plus web site for thy­roid disease, and I have seen at first hand (and expe­rien­ced it myself) the night­mare of having to put up with the terri­ble suf­fe­ring cau­sed by Doctors.

In the UK, for exam­ple, it is orga­ni­za­tions such as the Royal College of Phy­si­cians and the Bri­tish Thy­roid Asso­cia­tion who have terri­fied NHS doc­tors so much that they now no lon­ger presc­ribe any T3 hor­mone con­tai­ning pro­ducts, neither natu­ral nor synthe­tic, for fear of being repor­ted to the GMC  regu­la­tory body with the threat of losing their career and livelihood.

One com­ment I hear from those who con­demn self-treatment is the pro­blem of over-medicating. In rea­lity, it is the rec­kless prohi­bi­tion of all T3-containing drugs that cau­ses car­diac arrhyth­mia and risk of  sud­den death -  which would amount to at least mans­laugh­ter, and might even cons­ti­tute mur­der if the out­come is strictly fore­seea­ble - which it is. It is NOT patients who should be cri­ti­ci­zed. They have been dri­ven to buying presc­rip­tion medi­ci­nes for thy­roid and adre­nal insuf­fi­ciency. Cri­ti­ci­zing self-treatment is an outra­geous claim and one that the medi­cal regu­la­tors would no doubt be deligh­ted to hear. Seems that not only are doc­tors beco­ming sorely afraid of the Regu­la­tors, those who con­demn self-treatment are also falling into the same trap.

The “basic pre­mise” that under­lies my own pur­pose and advo­cacy is to help those being left to suf­fer because the medi­cal regu­la­tors and govern­ment are refu­sing to give a pro­per diag­no­sis — and for those who do get a diag­no­sis, giving them levothy­ro­xine sodium-only as a thy­roid hor­mone replacement.

Whe­ne­ver a new mem­ber comes to TPA, we encou­rage them to read, read and read again and to look at the infor­ma­tion in our FILES sec­tion which is there for all to see. We tell them about the asso­cia­ted con­di­tions that go along with being hypothy­roid such as low adre­nal reserve, sys­te­mic can­di­dia­sis, mer­cury poi­so­ning and ask them to request blood tests from their doc­tor to see if their levels are low in the refe­rence range for ferri­tin, vita­min B12, vita­min D3, mag­ne­sium, folate, cop­per and zinc. We have infor­ma­tion on the rea­sons they need to check these and if any of these are a pro­blem, make sure they are aware of just how essen­tial it is that they eli­mi­nate these con­di­tions, one by one, before star­ting thy­roid hor­mone repla­ce­ment – such con­di­tions are NOT auto­ma­ti­cally chec­ked by NHS doc­tors – and they put their patients at great risk by auto­ma­ti­cally presc­ri­bing levothyroxine.

We all know of the serious rami­fi­ca­tions for those patients who are not being given a correct diag­no­sis or treat­ment. Howe­ver, it is the endoc­ri­no­lo­gists and medi­cal regu­la­tors who are guilty of cau­sing much of the unne­ces­sary suf­fe­ring, not those patients who are dri­ven to self diag­nose, self treat and self moni­tor, as those who cri­ti­cize self-treatment would have us believe.

Mains­tream doc­tors do not appear to be even aware of the many com­mon and often undiag­no­sed symp­toms and dan­ge­rous con­se­quen­ces of low thy­roid. These inc­lude: serious men­tal pro­blems, sei­zu­res, heart disease, dia­be­tes inc­lu­ding mis­diag­no­sis and com­pli­ca­tions, cons­ti­pa­tion resul­ting in colon can­cer, all female pro­blems (due to high amounts of dan­ge­rous forms of oes­tro­gen), inc­lu­ding: tumours, fibroids, ova­rian cysts, PMS, endo­me­trio­sis, breast can­cer, mis­ca­rriage, heavy periods and cramps, blad­der pro­blems lea­ding to infec­tions, anae­mia, ele­va­ted CPK, ele­va­ted crea­ti­nine, ele­va­ted tran­sa­mi­na­ses, hyper­cap­nia, hyper­li­pi­de­mia, hypogly­ce­mia, hypo­na­tre­mia, hypo­xia, leu­ko­pe­nia, res­pi­ra­tory aci­do­sis and others.…

If suf­fe­rers of the symp­toms are NOT get­ting a pro­per diag­no­sis and the thy­roid hor­mone repla­ce­ment that would give them back their life and health through mains­tream doc­tors, how on earth would you recom­mend they do this, apart from scou­ring the country to find a doc­tor elsewhere who would help them, or recom­men­ding they get enough money together to see a pri­vate thy­roid spe­cia­list. Do you REALLY have such com­plete faith in the medi­cal pro­fes­sion to know that we should ALL leave our thy­roid health in their hands, sit back and do nothing – and pro­bably just wait to die? How can you recom­mend that they do NOT buy presc­rip­tion medi­ca­tions and should not self-medicate, self treat or self moni­tor when there is NO other option left open to them.

If those who cri­ti­cize self-treatment have per­so­nally heard from “DOZENS” of peo­ple who have follo­wed the “inc­rease my own dose of natu­ral thy­roid” self medi­ca­tion approach, then yes, something is seriously wrong with the ‘teachings’ or advo­cacy of such groups. Edu­ca­tion should be encou­ra­ged by all, and if mem­bers do not unders­tand the rea­sons why they need to take great care, such expla­na­tions should be given in such a way that they understand.

I rarely hear of mem­bers ending up in Emer­gency Rooms batt­ling poten­tially fatal heart arrhythmia’s, atrial fibri­lla­tion, and/or ending up in worse health than before, inc­lu­ding long-term and per­ma­nent heart damage through self-treatment. I have heard of many NHS patients being admit­ted to A and E, who had been trea­ted (or not) by mains­tream doc­tors who refu­sed them the correct the­rapy their symp­toms needed.

In good cons­cience, I do recom­mend that thy­roid patients self-diagnose, self-medicate and self-treat if they are being left to suf­fer, because orga­ni­za­tions such as the RCP, BTA TSH refe­rence range is so huge that they will never go outside of it. This refe­rence range is 0.5 to 10.0 in the UK – pro­bably the widest in the world. Then, we have to put up with the fact that the only thy­roid func­tion test that will be done is the TSH –  and doc­tors will not test Free T4 in a lot of cases, never mind free T3 level. Also, NHS Patho­logy labs refuse to test free T3 even if the doc­tor has spe­ci­fi­cally reques­ted it. So, many of us will NEVER get a pro­per diag­no­sis – being left to suf­fer their unne­ces­sary symp­toms for years and become wheelchair/bed bound in many cases, having to leave paid employment.

Such patients are told they have a ‘func­tio­nal soma­to­form disor­der’ when their TFT’s are nor­mal, when they con­ti­nue to com­plain of symp­toms – or –  those who are lucky enough to get a diag­no­sis, who are trea­ted with levothy­ro­xine only yet still com­plain of debi­li­ta­ting symp­toms are told also “you have a func­tio­nal soma­to­form disor­der” or “your symp­toms are non-specific” .

What mains­tream doc­tors do not recog­nize is that thy­roid func­tion tests ONLY test the amount of thy­roid hor­mone being sec­re­ted by the thy­roid gland.  TFT’s (more correctly should be called Thy­roid GLAND func­tion tests”, do not test to show whether there is periphe­ral resis­tance to the thy­roid hor­mo­nes at the cellu­lar level. This is not due to a lack of thy­roid hor­mo­nes sec­re­ted by the gland. Blood tests do NOT detect Type 2 hypothy­roi­dism. Type 2 is usually inhe­ri­ted. Howe­ver, envi­ron­men­tal toxins may also cause or exa­cer­bate the pro­blem. The per­va­si­ve­ness of Type 2 has yet to be recog­ni­zed by mains­tream medi­cine, but already is in epi­de­mic pro­por­tions. I think many suf­fe­rers of the symp­toms of hypothy­roi­dism know very much more than their medi­cal prac­ti­tio­ners. I do know which road I would like to follow – that is to find an exce­llent doc­tor I could trust impli­citly, but sadly, the ONLY road many of us have to follow to get back nor­mal health is the one where we have to self medicate.

Please do NOT blame patients who are dri­ven to self diag­nose and medi­cate as being the rea­son why the US govern­ment, or any other govern­ment for that mat­ter, are now eli­mi­na­ting the avai­la­bi­lity of natu­ral thy­roid and synthe­tic T3. You are being suc­ked into belie­ving what they want you to believe.

Levothy­ro­xine is a synthe­tic medi­ca­tion that can be paten­ted, and has made billions of pounds for the Big Pharma and for the regu­la­tors of hypothy­roid gui­de­li­nes. Natu­ral thy­roid pro­ducts can­not be paten­ted. Should doc­tors presc­ribe either synthe­tic or natu­ral T3, the majo­rity of suf­fe­rers of the symp­toms of hypothy­roi­dism would regain their nor­mal health – Big Pharma would suffer.

You should perhaps read the book “Dirty Medi­cine” by Mar­tin J Wal­ker if you have not already read it. Those who cri­ti­cize self-treatment appear to be accu­sing all those suf­fe­ring symp­toms of hypothy­roi­dism who have been dri­ven to buying medi­ca­tions without presc­rip­tion and self trea­ting as making it worse for the rest of those suf­fe­ring. It is NOT them who are abu­sing T3. If a T3 hor­mone con­tai­ning pro­duct was pro­perly presc­ri­bed, there would be NO NEED FOR PATIENTS TO BE SELF MEDICATING.

Self medi­ca­ting, wha­te­ver drug we are taking, whether using a T3 hor­mone con­tai­ning pro­duct or not, is always risky and patients must be fully edu­ca­ted in its use. Howe­ver, self medi­ca­ting with any drug runs risks, but I would rather self medi­cate with the chance of get­ting my health back than lea­ving my health in the hands of totally incom­pe­tent doc­tors –  incom­pe­tent because the teachers in our medi­cal schools are incompetent.

For those who are being left to die, without the treat­ment that will make them well, do-it-yourself medi­ca­tion is the only option left open to them. Would you really deny them this?  Lea­ving patients without the thy­roid hor­mone they need is appa­lling and one of the rea­sons TPA is cam­paig­ning to bring about chan­ges in the diag­no­sing and treat­ment of the symp­toms of hypothyroidism.

It can be appre­cia­ted to say to work with the right doc­tor, but what do you recom­mend if patients can­not find the ‘right’ doc­tor?? Perhaps you should all come over here to the UK and help those suf­fe­rers in fin­ding the right solu­tion and offer to help them help to find a “good doctor”.

Sadly, there are never any solu­tions given or alter­na­tive to self diag­no­sing, self-treating or self-monitoring, other than to “find a good doc­tor”. This does not help Inter­net thy­roid sup­port forum members.

Sheila
http://www.tpa-uk.org.uk/