Explanation of why levo & NDT don't work?

[Eddie83]

I'm looking for an article and/or video on this subject to assist a person with this problem. Some people (I am one of them) who have gut disorders, deep nutritional deficiencies, and other conditions, cannot respond well to levo or NDT initially; these patients need work on other problems first. My most pronounced symptom when I was first given levo, was intense anxiety. Now, I know another patient with this same problem, who gets intense anxiety and other dysphoric symptoms, when given T4-containing preparations like levo or Armour. Her allopathic doctor is clueless. I told the patient she likely has throttled T4->T3 conversion or adrenal insufficiency/arrhythmia, and that T3-only therapy might work to relieve her exhaustion. What I want to find for her, is article(s) and/or video(s) by persons with authority (probably an MD or ND) that explains all the reasons levo and/or NDT don't work in some patients, and the nutritional & other strategies for dealing with it. Please post references if you've seen something like this.

[silverfox7]

So you are really looking for scientific papers saying what happens and why? I'm sure I've probably seen some but then I don't save it, just act on it!

This forum has a search facility so all I can suggested is that you ask for what you want to know and see if any comments are backed up with a link.

Other than that it might help to see what the Thyroid Uk site say and see if they give references. They run this forum and Healthaunlocked -Thyroid is recommended by NHS Choices for thyroid dysfunction

[Eddie83 in reply to silverfox7]

googling something like "levothyroxine causes anxiety" hasn't produced authoritative info yet (perhaps I needed to go many pages into the references). Most of the discussions I find on the subject are conjectural in nature.

[silverfox7 in reply to Eddie83]

It's always going to be difficult in any case. Doctors are rarely involved in research, it's mostly science based. Plus it's been said on here many times that the only people who understand how it affects us is us, the patient. I'm sure if the medics really understood many more would try to help us or at least listen to us.

[Eddie83 in reply to silverfox7]

Still seems amazing that I can't find papers on this subject. But there are some youtube videos that talk about patients made sick by T3 or T4 treatment, such as this. youtube.com/watch?v=NWCX-Wv...(Not working as expected?)

[Hormone-mess in reply to Eddie83]

Thank you for posting this! I am seeing Tracy Shulsinger a Functional Nurse Practioner out of Boulder now. I have been seeing her for three years. She has been better than previous Dr.’s and is open minded. However, I believe she is starting to brush me off because I am still not feeling great and have fluctuating symptoms. I am dealing with premature ovarian failure as well as Hoshimotos/hypothyroid. I get internal vibration on occasion and she thinks it’s anxiety. I never had panic/anxieties before all of this started. I truly believe it’s the medication doing it. It’s so frustrating. I’ve been on Levo, synthroid + cytomel, and ndt. I’ve never really felt well on any of them. Although, my numbers looked best on combo synthroid and cytomel. Ndt has been the best, but when I increase my medication to suppressed TSH levels I get heart arrhythmia. I’ve also started dealing with dizziness and low blood pressure which is a new symptom. She hasn’t looked into why my blood pressure is doing this and just recommended more salt. It’s not helping! Do you recommend another Dr. near Boulder? How are you doing in your journey?

[Eddie83 in reply to Hormone-mess]

I am actually doing very well. It took me 21 years (1991-2012) to get to a stable situation, and I've slightly improved since then. I'm not familiar with Tracy Shulsinger. The ND who started things going in a positive direction for me, is Mary Shackelton. She was smart enough to diagnose gluten intolerance (which none of the allopaths could do), and going gluten+dairy free, my thyroid antibodies went away. I saw Ronald Rosedale MD for a short time, he was not helpful. I saw Pierre Brunschwig MD for a while, but he was not a lot of help. I saw Ian Hollaman DC (claims to be a thyroid specialist) for a while, but he could not get me over the top. I was taking every supplement imaginable for a long time but finally had to figure out for myself that gluten enteropathy had wrecked my protein metabolism (docs don't know what a low Total Blood Protein test means!), and using free amino acids took care of that nicely. In recent years my friends who have really severe health issues, and who have some money to throw around, have been going to Jill Carnahan MD. But she is a "concierge" doc who is super expensive!

Currently I am on synthetic T3+T4, at a dose of 5+88. I may be going to 10+88 or 10+100 after the next test. I have zero gluten and small amounts of dairy (cultured organic only) in my diet, and lots of supplements cuz I don't ever want to go back to where I was. The amino acids I use resolve several problems, including middle insomnia/depression, muscular & connective tissue degeneration, joint problems. I use only hormones (T3, T4, DHEA) and supplements. NO crappy BigPharma drugs, sure learned a nasty lesson about anti-depressants, benzodiazepenes, etc.

I am currently advising another thyroid patient on Medicaid. She has exactly the same problem I used to have: take levo or NDT, and get unbearable anxiety and dysphoria. Not sure yet what the cause of hers is yet, but I am hoping it is because she simply can't convert T4-> T3, in which case I will try to get her onto a T3-only program. Not sure how her adrenals are doing, Medicaid isn't going to pay for alternative-style adrenal testing. So far the Medicaid doctor has only used TSH, I told the patient she has got to convince the doctor to give her an FT3 test.

[Hormone-mess in reply to Eddie83]

Thank you for your response! I have tried to see Jill Carnahan although she isn’t accepting new patients and isn’t accepting a new wait list yet. Tracy Shulsinger NP works out of Dr. Cohan’s office and he is a mmj Dr. I have an appointment with Alison Hoffmeister out of Nurture Functional Medicine, she was trained by Robert Rountree. I am also taking a large amount of supplements as well as no gluten or dairy. I’m hoping another Functional medicine Dr. will be capable of taking me further than my current one. I pay her no disrespect as she’s helped me feel better, but still hasn’t made me optimal so to speak! I guess I expect better results when paying large amounts of money for visits and tests, especially when I am following suggestions and protocols.

[Eddie83 in reply to Hormone-mess]

Do you think T4 is possibly the reason why you are having symptoms? Have you ever tried going onto T3-only?

[Hormone-mess in reply to Eddie83]

I have not tried a T3 only protocol. I am a bit hesitant to do so because it is recommended as a last resort. It hasn’t even been mentioned to me by my current Functional NP. I suppose it could be a possibility, never have given it much in depth thought.

[HughH]

Some people are made worse by low doses of thyroid hormones because the body detects them causing reduced TSH production leading to the body producing less thyroid hormones. This can result in thyroid hormones being lower than they were before medication and the person feeling worse. For this reason a good doctor will start with at least 75 mcg of levo.

Another reason why some people do not improve on levo or even NDT is that doctors insist in keeping hormone levels within normal ranges. T3 is the active thyroid and some people require Free T3 to be high in range or above range to feel well. To achieve this the TSH will be close to zero and doctors do not like it!

The need for high Free T3 can be caused by thyroid hormone resistance, also known as impaired sensitivity to thyroid hormone. You will find info on this through Google.