confusing advice, would appreciate input on this

OK, so I would like some input from others here:

Last night, I had a phone consult with a person originally trained as a nurse and a mid-wife, who now works with hormonal therapies and rebalancing hormonal imbalances. She was recommended to me by someone in another forum.

A lot of what she told made made perfect sense, but other things didn't. For instance: she said that Hashimoto's is a curable disease in most cases, or not even a disease in the true sense of the word. What she means by that is that most people get their thyroid function back once they find the cause of the problem (inflammation).

I have read so many times over the years that Hashimoto's is the number one cause of hypothyroidism, and that it is incurable.

This consult also told me that, in her experience, most people on thyroid hormone replacement feel best when they have a TSH around 2, and that the TSH must be normal at all times, even on drugs containing T3. I have never had a so called normal TSH on NDT. Even as little as 1/4 grain suppresses my TSH below 0.

The thing is that I have noticed that, once my TSH drops below 0, my antibody levels go down. At the time of diagnosis, 15 years ago, my anti-TPO levels were +6000. On a so called normal TSH (around 2), they were around 1500-2000. On TSH suppressive doses of NDT, they are undetectable (<21).

She said she has hardly ever heard of anyone taking as much NDT as I do (5 grains of Erfa daily), and that most of her patients feel great on 1.5-2 grains daily. Very few people, if any, should need more than 4 grains daily, according to her.

I just don't know...like I said, other things she said made sense (like you should not take estrogen if you are pre-menopausal, as you are often estrogen dominant), but only natural progesterone, 10 days a month at bedtime, and that Medrol is not the best treatment for adrenal fatigue, as it tends to suppress your adrenals instead of supporting them).

But...I just don't feel comfortable hearing that I need to have a normal TSH along with FTs well in range, that hardly anyone needs more than 2 grains of NDT daily, and that a TSH around 2 is ideal...I know from experience that I cannot keep my TSH between 1 and 2 (where she recommends it) on drugs containing T3. The last time I had a so called normal TSH was on 150 mcg of Euthyrox daily...

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  • I would say that 'within the normal range' means that people who don't have a thyroid gland dysfuncation may well be happy to be anywhere in the range. On the other hand once diagnosed with a TSH above approx 5 although the BTA insist the continued illhealth must go on without any hormonal support until the TSH reaches 10. (this decision means they obviously don't live in a hypothyroid world). Hashimotos means the person has antibodies attacking the thyroid gland and once they have done their job the person is rendered hypothyroid. This attack can go on for a long time.

    Your nurse is wrong. This is a link I posted earlier which might be helpful re autoimmune conditions in general and so far I have 3 autoimmune conditions and I suspect others on the forum have more than 1.

    hashimotoshealing.com/hashi...

  • Thanks a lot! Having lived with this disease for the past 15 years, I know my body well enough to know that a TSH of 2 is not ideal for me...I just did not feel comfortable about that recommendation.

    I have also read somewhere that a TSH between 1 and 2 may be optimal in euthyroid individuals (people without thyroid disease), but that it is not a valid goal for the treatment of hypothyroidism.

    If it's true (like one doctor once told me) that the TSH is what makes the antibodies react and attack the thyroid, then it makes sense to me to keep the TSH as low as possible.

  • thecat346, Keeping TSH 2 without regard to FT4 and FT3 levels is why so many hypothyroid patients remain symptomatic. If most of her patients are well on her protocol, what does she do for those who are not?

    Her views on Hashimoto's are bizarre. It is an autoimmune disease which progressively damages the thyroid gland. If the disease can be managed preventing further damage the existing damage can't be undone. Suppressing TSH suppresses thyroid activity and dampens Hashi flares preventing further damage. Antibodies fluctuate and are high after a Hashi attack and fall until the next attack. The only cure I'm aware of for Hashimoto's is complete loss of thyroid function.

    ____________________________________________________________________________________

    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • Thanks to you too, Clutter! I agree with you; the only way to "cure" Hashimoto's that I know of is to either have the thyroid surgically removed, or for the gland to be completely destroyed. Her views on Hashimoto's sounded very strange to me as well...I have never tried to heal it, nor have I been told that it would be possible, so that is not really an issue for me...

  • I totally agree my 50 years of experience with my husbands thyroid disease and then daughter and granddaughters tells me that theres very very few Endos who have a clue about thyroid

    A few GPs are wonderful and prepared to be educated but vast majority of medics are brainwashed into believing Levothyroxine is the B all and end All yet it definitely is not as 5 of the 6 hypos in my family prove

  • I don't rate many endocrinologists very highly where thyroid disease is concerned (most are diabetes specialists) but I agree more with them than I do with your ex-nurse!

    For many people a TSH of 2 is high. There are many things that affect TSH including taking thyroid medication, excessive diet/exercise, stress, other non-thyroidal illnesses and so on. There has been research that suggests that TSH bears little resemblance to your thyroid hormone function in your body once you are on thyroid medication because the feedback loop between thyroid, pituitary and hypothalamus no longer functions correctly. In order to get my TSH into the normal range I would have to stop taking thyroid medication altogether so that my T4 and T3 are almost immeasurable and even then it may not increase enough to be considered normal. Something has happened over the years that means I no longer produce enough TSH regardless of my thyroid hormone levels.

    On T3 your TSH will be suppressed. In fact doctors used to prescribe T3 exactly for this purpose - because it is so good at suppressing TSH without rendering a person hyperthyroid. I'm afraid your nurse is wrong about TSH. My GP actually told me not to be concerned about my low TSH - it is low because of the T3. It's actually low anyway but you get the gist :)

    I agree to some degree on what she says about oestrogen and progesterone, but this obviously depends on the individuals personal levels. I also partly agree with what she says about Medrol. If adrenal insufficiency is irreversible then something like Medrol is required. For temporary adrenal fatigue, other measures (including, in some cases, low dose hydrocortisone) may be necessary.

    Don't forget that she is not a doctor but then neither are we :D

    Hashimoto's can't usually be 'cured'. In some cases it can be mediated with selenium, vitamin D, reduction of stress etc reducing the number of antibodies but this is usually not permanent. And once the thyroid has been damaged/destroyed it doesn't fix itself like the liver. In some cases suppressing TSH seems to help with antibody levels which completely goes against what she is saying.

    I think you have successfully weeded out the useful information from the not-useful misinformation.

    Carolyn x

  • Thanks so much to you, too!

  • I think if hashimoto is caught in early stages and necessary changes done one might be in remission for years if lucky.

    But that cannot be considered as cured!

    Same with psoriasis. If you have you have it. End of story. Even though with necessary changes it would be in remission for years.

    I find it a bit weird that doctors and nurses don't consider autoimmune disease as a real illness. Sort of dangerous too.

  • Your observations are correct--you cannot have a normal TSH if you take any T3. Have you seen this graphic? tiredthyroid.com/blog/2014/... It says that you can only have 2 out of 3 values in normal range, which is what you already found out on your own. On Euthyrox, you had normal TSH and T4, but I bet your T3 was low. Now on NDT, you have normal T3 and T4, but no TSH. I've had the same experience.

    Whether Hashimoto's is "curable" or not depends on your definition. There are some new books where the authors say they were "cured." But their definition of "cured" is that their antibodies have decreased to the normal range, or that they show little if any antibodies. But if you read carefully, they are still taking thyroid medication! That is not my definition of cured! Based on those definitions, you're already cured!

  • So true...I have never been able to keep all the three of them (Ft3, Ft4, TSH) within range, while on medication containing T3...and yes, my anti-TPO levels became "normal" once I was on enough T3 to suppress my TSH...

  • SO INTERESTING!!!! It says in the article you included that TSH stimulates production of T3 AND T4 PLUS the conversion of T4 to T3. In a person on T4 therapy only, TSH falls as T4 is taken, but the lower TSH leads to less T4 to T3 conversion...I wish ALL doctors would read this and accept it!!! I am going to print this for future reference! Thank you so much!

  • You're welcome. I SO wish doctors would get it. Nearly everyone on T4 illustrates this: normal T4 but low normal T3. And guess which hormone correlates most with how you feel? Not T4!

  • You might be interested in this paper :

    eje-online.org/content/143/...

    The title of the paper is :

    Prevalence of thyroid disease, thyroid dysfunction and thyroid peroxidase antibodies in a large, unselected population. The Health Study of Nord-Tr ̆ndelag (HUNT)

    Take a look at Table 3 - TSH - median, 2.5 and 97.5 percentiles in persons without known thyroid disease or diabetes.

    If you look at the right half of the table it gives you TSH values for people in different age groups and both genders who do not have positive TPO antibodies.

    To give you an example - The median TSH for females under 40 without positive TPOAb is 1.3. In women aged 70 and over the median TSH is 1.7 (the highest TSH given as a median.

    The median is the number which divides the population exactly in two - 50% of people have a lower TSH and 50% have a higher TSH than the number given.

    I found the results very interesting indeed!

  • Also, she said that, concerning blood pressure, only the upper (systolic?) BP is important, not the lower (diastolic?) one, because if the upper BP is normal, the lower one will automatically be normal as well...is that really true???

  • It sounds unlikely to me. I think I would ask for a reliable reference before believing it.

    There is a measure called the "pulse pressure" which is the systolic value - diastolic value and it can vary a lot. Having a healthy systolic might increase the chances that diastolic pressure is also healthy, but I can't see any justification for saying this is automatic.

    en.wikipedia.org/wiki/Pulse...

    Various things can alter pulse pressure, including exercise, ageing, and several medical conditions.

  • Also, she told me to immediately stop estrogen. I was prescribed Estrogel in November 2011, along with Utrogestan (bioidential progesterone). I was told to use Estrogel day 5-25 of cycle, and Utrogestan day 15-25.

    I have read over and over again that you should not use estrogen for more than five years, as it increases the risk of breast cancer. I was put on estrogen although I was told I was not peri-menopausal back in 2011, but because I was diagnosed with adrenal fatigue.

    I have now stopped taking estrogen, and am taking progesterone only. Is that advisable?

    My doctor (trained by Hertoghe) told me at my last appointment a few months ago that, since my periods have started to be irregular (every 6-8 weeks, instead of being very regular), I should take estrogen and progesterone day 5-25 of cycle. This nurse told me that was the most stupid thing she'd ever heard, and that I should need neither.

    My OB-gyn put me on Primolut Nor to start my periods again and, when I take it for 10 days, I do get a period. If I don't take it the next month, no period.

    I don't suffer from terrible problems related to menopause (at least not yet), so maybe I don't need estrogen at all...looking back, I wish I had not started it four years ago, just because of adrenal fatigue, because I might need it in a few years, and then I will have used it for four years already...

    As far as I know, progesterone can be used indefinitely without risk?

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