Help needed: Educating my Endo!!: Hi everyone... - Thyroid UK

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Help needed: Educating my Endo!!

juanra profile image
13 Replies

Hi everyone

next week i've got an appointment with my endo, well, both of us (me and my wife, both with hashi).

The thing is we haven't seen her (or any other endo) for the last two years. Last time there we managed (after a nasty discussion) to convince her to make a full thyroid panel (rT3 included), futile effort 'cause everything was in range, so she went no further.

She's the expert, not you. She's done residency training program in Mount Zion Hospital, and never heard of protocols different of those using T4, or about connections between diet and Hashi, so they do not exist (and please do not mention adrenal fatigue, it does not exist either; they work or not, no middle greys in the palette). She's so full of herself that when after 1 year of gluten&diary-free diet my TPOAb levels reduced dramatically and my wife's TPOAb dissapeared she concluded that labwork was wrong and repeated them. Labwork results where the same, so she then concluded my wife's previous ten years labworks where wrong, and she had never had hashi.

We've been three years now just with diet and supplements but our two last routinary TSH+T4 labs (we do them every 6 months) show our THS has increased, my high cholesterol levels have come back and, more worrying, her TGAb are high (25,75 UI/ml in a 0-4,11 range) and the IgE too (177 kU/L in a 0-120 range).

We improved in our condition when changed our diet and lifestyle, but we feel stuck now and our symptoms, specially hers, are worsening. So we've decided find an openminded doctor to treat us and the only way seems to be contacting a private endo, which is an absolute shame in a country with a public health system like ours (I'm talking about Spain).

That said, we'll see our endo again just to give a last try before spending a money we don't have going to an endo 450Kms away from our home. If we succeed it will be like Christmas morning when you're five, if not at least we hope we can manage to get the labworks :).

So here is where you can help me. Is there any "Educate your Endo" package in the group? I've frequently read many posts refering to PubMed articles, is there any link to a compilation or updated list of RELEVANT articles on treatments with NDT or t3+t4 combinations? I do insist on relevant 'cause you can imagine what would said a doc like this to an article published on a wellness or Mind&Body-like magazine.

Thanks a lot in advance for your time and answers.

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juanra
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13 Replies
Clutter profile image
Clutter

Juanra, Cholesterol rises when TSH rises. An increase in dose of thyroid replacement will probably reduce TSH and cholesterol. Suppressive doses of Levothyroxine can reduce antibodies (sorry I don't have links) so perhaps you both need dose increases but this will be difficult if your endo is determined to have TSH within range.

I'm not sure an endo who refuses to believe that dietary changes can reduce Hashi antibodies and is prepared to doubt the veracity of 10 years labs can be educated. There is research suggesting T4 monotherapy isn't always successful and T4+T3 combination therapy may be successful in those circumstances and particularly in those patients who have impaired DIO2 gene or genes which impair T4 to T3 conversion. The addition of T3 often suppresses TSH and lowers FT4, so again, there can be problems with doctors who won't accept TSH lower than range.

karger.com/Article/FullText...

nature.com/nrendo/journal/v...

thyroid.about.com/od/hypoth...

deiodinase.org/2013/11/06/i...

thyroid.about.com/b/2010/05...

ncbi.nlm.nih.gov/pmc/articl...

eje-online.org/content/161/...

labtestsonline.org.uk/under...

juanra profile image
juanra in reply toClutter

thanks a lot for your references. I'll check them all.

Anyway, not for me, but for future uses, maybe it would be a good idea to prepare such an "Educate your Endo" package

:)

regards

HIFL profile image
HIFL

I highly recommend the Tired Thyroid book, because it's in plain English, with numerous references to back everything up. Your doctor will have a hard time arguing for T4-only or treating by TSH after reading it. This is the US link, but I'm sure you can download an ebook from wherever you are: amazon.com/Tired-Thyroid-Hy...

juanra profile image
juanra in reply toHIFL

thanks for your recomendation. I didn't know about this book.

Letting aside the fact that i don't think that giving a Doc (not this one, but anyone) a book to read and "educate" himself on his own speciality is a good move, much lesser if it's not written by another doc.... Is it that good and informative??

regards

HIFL profile image
HIFL in reply tojuanra

Good point, but at least it will help you understand the terminology to talk intelligently with them, and give you legitimate medical journal references to back you up. I thought it presented more information than any other thyroid book out there, especially because of the case studies. One doctor said it's better than Dr. Broda Barnes' book. He prescribed desiccated thyroid, and saw hypothyroidism as the root cause of many illnesses.

juanra profile image
juanra in reply toHIFL

thanks for clarifying!!!

regards!!

silverfox7 profile image
silverfox7

So the lab results are wrong! I'd be tempted to inform someone at the hospital to check on the labs because of what your Endo says because you are concerned not only for your own health but that of the hundreds of others whose health may well have been compromised because of this! That must surely get some sort of reaction! If you are ignored then alert the press again stressing that you are concerned for others!

juanra profile image
juanra in reply tosilverfox7

Well, its's difficult to defy the Chief of the Service.

Thanks for your concerns, anyway. They're ours too, but (chiefs or not) most docs act this way. You're not supposed to question their knowledge or authority.

The problem is that they interprete your concern, curiosity and will as interference and questioning. They do not see the patient as someone you've got to work with, to collaborate, but someone to command.

pity them!!

pooderdog profile image
pooderdog

Hi. Go to the website Stop The thyroid madness.com they are in the know in the thyroid groups. TSH is a pituitary hormone so no use in testing it.

Good luck you two.

pooderdog profile image
pooderdog

I do hope you know that many people just need T3 only. Say no to synthetic meds like Synthroid and Levox!!! You will most likely get much worse with that junk.

helvella profile image
helvellaAdministrator in reply topooderdog

Sorry, are you saying that T3 isn't synthetic?

juanra profile image
juanra in reply topooderdog

Thank you very much for taking the time and interest of answering me, but it would be much more efficient (for me and future users consulting the forum) if you focused on answering the question asked.

Besides that, yes you're right some people developes better with T3-only meds, but some does on T4-only meds and others in a combination of the two meds (like NDT compounds).

And helvella point is good too, we better speak properly so other users do not get confused. T4 and T3 are chemical substances whose origin can be synthetic (levothyroxin, liothyronin and liotrix) or natural (NDT).

For us, not having a doctor supporting our treatment, has meant not to begin with any of the treatments so we've been just focused on what we could do (diet and supplementation), what does not mean. Now we need meds, so we're looking for doc support.

Thanks and kind regards.

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