have seen four so called top doctors, so really in need of advice

OK, so I am feeling pretty confused right now, and would really appreciate some advice on how to move further:

I went to see my first Hertoghe doctor in 2004, in H's practice. I had been on thyroxine for three years, after being diagnosed with Hashimoto's disease in late 2000, but it never did much for me. I had such high hopes when I went to H's clinic...after having read his book "The hormone solution".

Once there, I was told H himself was no longer seeing patients on a regular basis, but that I would see one of his associates. The doctor in question but me on Armour (slowly raising it up to 180 mg daily), 2 mg of Medrol daily, Duphaston (now discontinued, as far as I know), and iron supplements.

There was no noticeable improvement. Six months later, the doctor declared that was likely because my TSH was suppressed (<0.00), and because I needed to go back on thyroxine only. At the same time, I was taken off Medrol, as that did not seem to have done much for me either.

Shortly afterwards, I decided I did not need to pay 140€ to get thyroxine prescribed, when any doctor could do that for a tenth of that sum...so I went back to seeing a GP.

Four years ago, I went to see another H doctor. I was immediately put on Medrol (4 mg daily, told to increase it to 5 or even 6 mg daily depending on symptoms), as well as Armour, Estrogel, and Utrogestan (Progesterone). After testing, I was aslo put on Testim (testosterone), and HGH (which I decided never to take; I realise I was frightened more than anything, but the idea of injecting myself with HGH really was frightening to me).

Last year, in one last desperate attempt to get well, I went to see H's sister. She diagnosed me with adrenal fatigue; yet, told me to go on an OTC product called Energy Complex, to try to cure it without drugs (Energy Complex contains L-carnitine, L-glutamine, L-ornithine, Vit B3, Vit B6, and Rhodiola rosea). She prescribed both Armour and Erfa, and told me to see which one works best for me.

I ended up seeing a fourth H doc who told me there is no need to take NDT, as synthetic T3 and T4 will give your body everything it needs, plus it's much cheaper...so he refused to prescribe anything than synthetic meds.

I recently had a hair mineral analysis done, and the results say that I have "adrenal insufficiency"...I have been recommended a product called Adrekomp, to take for 3-6 months.

So, having seen so many so called top doctors during the past decade, I now feel I need to make a decision on whom to stay with. I have been on Medrol, Erfa, Armour, Novothyral, L-Thyroxine, Duphaston, Utrogestan, Estrogel, not to mention all the vitamins and minerals...for more than a decade now. I realise my body must be confused from all the switching, but I have been following my doctors' advice, no matter how conflicting...for which I may now be paying the price.

If anyone has successfully cured adrenal fatigue, and managed hypothyroidism (hashimoto's), I'd really like to know...!

[galathea]

Well i have. I trusted my own judgment and the forums to decipher test results. I realised my adrenals were struggling so i did an adrenal saliva test. I then went over to the adrenal forum and got a cortisone dosing schedule. I took cortisone for two years, took my temperature three or 4 times a day and plotted the averages. ( i have posted about this previously).

I still have Hashimotos and now self medicate with ndt. Have been on ndt for about 5 years but was on synthetics for many years before then.

My personal belief is that we expect too much from our doctors and they dont have sufficient interest to get us 100% well. We are the experts on our own bodies and can be trusted to know when we don't feel right. The doctors are not in our skins. The last doctor was giving you all the things the adrenals need to work, lots of vitamin b and c.

I tried Erfa, and thiroyd S and neither worked for me, i havent tried armour but i do really well with nature throid or thiroyd. Its a matter of trial and error.

Suggest you have a look at the website linked to the adrenal forum.....

rt3-adrenals.org

Have a look at the dr rind temperature graph....

drrind.com/therapies/metabo...

And see if you can find out where your levels of tsh, free t4 and free t3 are at the moment.

You need a plan. Start by looking where you are now, and only change one thing at a time. And monitor your temps to see how each thing affects you.

Good luck...

You really can do it.

G xx

[Hidden in reply to galathea]

The fact is that, when I had labs back in August, my FT4 was midrange, my FT3 levels slightly out of range, and my TSH suppressed on 6 grains of Erfa. Since then, I have started a new bottle of Erfa, and have been going downhill since, so there seems to be some truth to the rumours about Erfa's being somehow reformulated, although the company denies it.

When I was on Armour, a couple of years ago, on 5 grains, my FT3 levels were only 2.9 (ref 2.2-4.2) 24 hours after latest dose, which is why I switched to Erfa.

Maybe I should try Armour again, and simply raise it, or take it with cellulase, which is said to break down the cellulose? Some also say you need to chew it up since the reformulation...?

[Heloise]

My oh my. I don't know what these doctors were thinking. I thought to aid your adrenals you take adaptogens or stimulants like licorice and Ginseng OR you take hydrocortisone in a low dose for a few months. You need to do a saliva test to determine which.

This man has a great understanding of both adrenals and thyroid and perhaps he can address your symptoms. I know he never recommends pharmaceuticals.

youtube.com/watch?v=T_Re4ja...(Not working as expected?)

[Hidden in reply to Heloise]

Thanks to both of you! You are right about us being the best experts on our own bodies; however, given the fees of those H docs (from 150 € to several hundred € a consult), you'd expect more, wouldn't you...?

From now on, I will not trust any doctor too much, but will try to listen to own body instead, and follow the excellent advice given in this forum! Thanks for the link above, it seems really interesting, and I will check it out!

[Heloise in reply to Hidden]

Cat, this man is on YouTube as well and has a series of 5-min. videos covering 24 reasons for low thyroid. You will get many ideas. You have resistance somewhere or you would not need 5 grains. The fact of your FT3 being high may mean it is pooling and is no way being "active" and entering your cells into receptors. Often cortisol is the reason. I'll post video #21 and you can decide to use the icon in lower right to take you to others.

youtube.com/watch?v=qYeFh06...(Not working as expected?)

[Hidden in reply to Heloise]

Sounds interesting, thanks, I will look at it!

[Hidden in reply to Heloise]

Heloise, I looked at this 5 min video, and it's interesting, but I get the impression it's more about high cortisol levels causing hypothyroid symptoms, rather than people who start out as hypothyroid?

I have been diagnosed with low cortisol levels, and have been on Medrol for the past four years. I would love to get off it, I just never seem to find a good time to start the weaning off process...one problem with Medrol is that it cannot be measured in your blood, so I would have no way of knowing how much cortisol I actually have floating around.

Does needing 5 grains a day automatically mean something is wrong? My doctor has patients on as much as 7.5 or even 8 grains of Armour daily...

[Heloise in reply to Hidden]

Cat, I selected that video from the 23 others. Any of which involve other symptoms from neurotransmitters like serotonin or dopamine, or antibodies like TPO and THS, or deficient Iron, ferritin, folate, or even an imbalance of sex hormones. Many of these are controlled by the adrenal glands. They get the message from the sensory nerve, the hypothalamus, and the adrenals start working to stableize the problem which then takes away from the thyroid gland. The first video explains this so well. That's why the cholesterol count goes up because that is what the adrenals use. Then, there is adrenaline and steroids. Dr. Bergman explains it so well in the video. Much better than I.

Basically, the glands are doing exactly what they should under the circumstances until they are destroyed. So there may be nothing wrong with your thyroid but there is something causing it to react the way it is.

[Hidden in reply to Heloise]

No, there is definitely something wrong with my thyroid. I was diagnosed with Hashimoto's disease (or autoimmune thyroiditis) in late 2000, and my antibodies levels at the time came back >6000. My current anti-TPO levels are <20, with a suppressed TSH.

So, I suffer from primary hypothyroidism, not secondary, which I think this video focuses on. The impression I get is that this doctor (very nice and knowledgeable, BTW) refers to patients who display hypothyroid symptoms, while their thyroid labs come back normal, and that this could possibly be caused by elevated cortisol levels. Feel free to correct me if I'm wrong.

I don't know that much about pooling, but my FT4 levels have always remained well within range, and seem practically unaffected by raises in dosage. A few years ago, on Armour, my FT3 levels were 2.9 24 hours after latest dose, 5 grains (ref 2.2-4.2). My doctor and I interpreted this to mean that Armour was not working for me, and so I switched to Erfa. However, I am not sure what your FT3 levels should look like 24 hours after taking NDT; I mean, if they are elevated (close to or even slightly above the upper normal range) 24 h after taking any meds, I guess they were much higher the day before, right after taking your medication, right...? So, maybe my FT3 levels on Armour were actually better for me than on Erfa (in August of this year, my FT3 levels came back 4.11, so just below upper normal range, 24 hours after taking Erfa).

I do have problems with my adrenal glands, though. I have been diagnosed with adrenal fatigue, and that is why I was originally put on Medrol, in late 2011. Now, some say you should always see Medrol as your last resort, and always try hydrocortisone (or possibly even supplements; adrenal cortex and/or glandulars) first.

I started on Medrol, because my doctor said I tended to retain fluid (which I now suspect was caused by hypothyroidism, after years on thyroxine only), but now, I would prefer to wean off Medrol, rather than switch to HC.

Before I was put on Medrol and NDT, my doctor (trained by Hertoghe) diagnosed me with hypothyroidism (despite 200 mcg of T4 daily), and adrenal fatigue, based on blood and 24 hour urine analysis. I have never had any saliva test done (not even sure those are available outside the US?) Both my thyroid and my adrenal hormone levels were suboptimal, according to doctor, who works with so called optimal levels. Cortisol levels in 24 h urine, for instance, should be at least 50; mine came back 30. T3 levels in 24 h urine should be at least 2000; mine came back 824. T4 levels in 24 h urine should be at least 2500; mine came back 1250, even though the GP who had been my doctor for years claimed that nobody should ever take more than 200 mcg of T4 daily.

Please don't take this as criticism, as I really appreciate your efforts to help! I also really like this doctor, and wish there were more doctors like him around...!

[Heloise in reply to Hidden]

Absolutely no problem with criticism, Cat. We are all trying to figure this out and it is very complicated so even after about fifteen years, there is still a lot of ignorance.

First, when you say something is wrong with your gland, I am saying it is NOT the fault of your gland. It did not go wrong. Something caused the attack (I'm glad you pointed out the antibodies) but the doctor should be treating the attack which is usually caused by your own immunity which is just targeting the thyroid gland. Dr. Clark's videos 7, 8 and 9 discuss antibodies. That points out which part of the thyroid production is being attacked. Still, this is no weakness of the gland itself and it will still attempt to produce in spite of the attack. I haven't found any treatment that actually gets rid of antibodies except for resolving the leaky gut which causes the immune cells (found also in the gut) to become overactive.

Dr. Bergman states that no organ causes it's own demise. Your lungs or liver do NOT give themselves cancer. Your organs always try to heal themselves if possible. I totally agree with that.

I am also confused about the timing of T3 levels. It's short half life makes it difficult to determine when it peaks and how long it lasts so I am not going to do anymore FT3 tests. I had one about four hours after taking it as someone here suggested might be good. I don't know if Dr. Lowe (who took a huge dose of T3) ever pointed to anything definitive.

I'm going to look up Medrol and may respond to your paragraph on that later. I don't know if you are a female or male and that makes a difference.

In video #11 I took notes about progesterone. This hormonal change can also trigger a thyroid problem:

youtube.com/watch?v=U15Pcov...(Not working as expected?)

[Hidden in reply to Heloise]

I am woman, 46 years old. Thanks for this long, and wonderfully well-written post, Heloise!

BTW, after I was initially diagnosed, in late 2000, I had X-rays of my thyroid gland (not sure what the correct name of this procedure is).

My doctor showed me the results afterwards, and explained to me how to interpret the X-rays. I could see my butterfly-shaped thyroid. A healthy thyroid, my doctor said, will appear dark grey, even black, against the lighter background. That means the cells are healthy, and filled with hormones.

My thyroid, on the other hand, was mostly grey-white, with a few darker spots here and there. That, my doctor explained, meant that most of the hormone-producing cells had been destroyed by the autoimmune attack.

My doctor based himself on a report by the endocrinologist who requested the X-rays of my thyroid.

[Heloise in reply to Hidden]

You are welcome, cat. You keep searching and questioning here, you will get thoughtful opinions. I wish you could get off Medrol when you deem it's possible. Most pharmaceuticals end up constricting what the body's own mechanisms can do but I know there are so many angles to this. I wish you well on your journey.

[Heloise in reply to Hidden]

This lady has been a big part of the Stop the Thyroid Madness website. Her story could be yours. She is about the same age as yours when she posted this. It's quite a manuscript but full of possibilities.

stopthethyroidmadness.com/j...

[Hidden in reply to Heloise]

VERY interesting, thanks!

[Hidden in reply to Heloise]

There is one question I cannot help but ask myself: if nobody ever needs as much as 5 grains, then why do manufacturers make 5 grain pills...?

[Heloise in reply to Hidden]

I wish I had the statistics. I'm just going by the hundreds of posts I have read here. Very few people say they are taking more than 2 or 3 grains but I can see why you might require more under certain conditions. I'll try to find the article about that. The things is you should not NEED 5 or more grains but somewhere along the process, it is not being utilized.

Try a search here: stopthethyroidmadness.com/s...

[helvella in reply to Hidden]

You can also get 100 microgram liothyronine tablets - which was a surprise to me given that only a small number of people seem to need that much in a single dose.

[Joyia]

Please excuse my ignorance but could you explain in simpler terms what you mean by pathogens and what they are, thank you.

[Joyia]

Thanks Jane I thought this is what it meant but nice to have it clarified.

[Hidden]

There are a few other things I have been thinking about lately. For example, almost every drug and supplement contains cellulose as a filler. I have not heard anyone complain about beta-blockers, blood pressure medication, antibiotics, or aspirin (just to mention a few) working less well because of their cellulose content.

So, is cellulose particularly problematic when thyroid hormone absorption is concerned? Or is it only a problem for those who take NDT sublingually (it seems cellulose makes pills melt less easily under the tongue?) Or does cellulose somehow affect gut absorption of thyroid hormone?

I also don't understand the Erfa discussion. The company keeps denying any formula change. But it does not make sense that some batches would work, while others don't. The only thing the company admits to is moving production facilities, from Belgium to Spain...but that in itself would not affect the effectiveness of the drug, would it...?

So, I'd be curious to know if anyone has any updated information on Erfa (effectiveness or lack thereof)?

[helvella in reply to Hidden]

Cellulose isn't one well-defined substance. The sources, the processing, etc., all affect exactly what you get.

Maybe you remember the problems with Teva levothyroxine? One of its ingredients (not cellulose but dextrin) changed and the product was then unable to deliver its claimed potency. (This was a breach of the product licence.)

It is also possible that things like temperature, humidity, pressure and other physical factors affect the ability of the product to deliver even if the actual ingredients and methods are the same.