give up NDT...?

Recently, I have had reason to wonder if I am one of those patients who should not be on NDT.

A month ago, I switched from Erfa to Thiroyd (Thai NDT). The main reason for this was that Erfa was causing me to itch. I knew it was Erfa because on a weekend trip away from home, I realised I had forgotten my meds, and the itching went away within 24 hours.

Also, NDT is very expensive in Belgium; I spend around 800 GBP a year on it. Thai NDT is only a fraction of that cost.

I was on 5.5 grains of Erfa, and decided to take 5 grains of Thiroyd. I did this because I figured it would be difficult to split Thiroyd pills due to their size, and also because I knew Erfa has been problematic lately. I was convinced Thiroyd would work better, and therefore I would need slightly less.

The good news is that the itching went away and has stayed away. Overall, I have felt very good on Thiroyd.

A few days ago, I went to the lab, and had a shock when I received a copy of the lab results (after one month on Thiroyd):

FT4 0.7 (ref 0.6-1.4)

FT3 2.9 (ref 1.7-3.7)

TSH completely suppressed (<0.01)

So, my FT4 levels are at the very bottom of range, and my FT3 levels only mid-range, after four weeks on 5 grains of Thiroyd.

I immediately added another grain and have felt better since, but I cannot help but wonder if NDT is really right for me...?

I briefly tried a T3 only regimen a couple of years ago, but felt awful and had to give it up after about a week. As soon as I added some T4, I started to feel better.

I also managed to wean off Medrol about a month ago. I had been on it for four years and have tried to wean off it unsuccessfully on several occasions over the years but, this time, I managed to do it. I have not taken it for a month, and still feel OK. But my latest lab results make me wonder if I indeed I need adrenal support to make NDT work? Or should I give up on NDT altogether and take synthetic T3 with T4?

I have Hashimoto's and, at the time of diagnosis (16 years ago), my anti-TPO levels were >6000. A few months ago, they were well below range, and I have read that a suppressed TSH can achieve that. Now, they were slightly out of range; very slightly, true, but does that not mean that a new attack is going on...?

[Ruthi]

Most folk don't need that much NDT to achieve optimal levels, which suggests you aren't absorbing your medication very well.

Are you taking it an hour before food on an empty stomach as you would Levo?

What was your original reason for switching from Levo?

You can't just give up NDT, you'll need an alternative plan!

Oh, and it occurs to me that when I took Thyroid it seemed very weak in comparison to my usual Thyroid S. I had only bought it because of supply problems and of course the Thyroid S reappeared on the market as soon as I bought the Thyroid. I didn't bother testing, just switched back but maybe I too was not absorbing? Not that I am saying go Thyroid S, it seems to be the brand that causes reactions most frequently.

[Hidden in reply to Ruthi]

The reason I originally switched from levothyroxine to Armour back in 2011 was because I went to see a so called top doctor (a Hertoghe doctor, as they are called in Belgium), and blood and 24 h urine analysis showed suboptimal levels of both FT4 and FT3.

I did very well on Armour for the first six months, then started to go downhill. I ended up on 5 grains daily. Someone suggested I had been given "old" Armour the first time around, but I doubt it, as the batches I got expired in mid-2013, and Armour was reformulated in early 2009. As far as I know, manufacturers indicate the expiry date two years after date of mfg...?

Anyway, STTM sang Erfa's praises all the time and, all of a sudden, the pharmacy I used to order from no longer carried Armour, only Erfa. I did OK on it for the first year or so, but never as great as many others did, according to glowing reviews all over the net. Looking back, I guess you could say I found it...inconsistent. It was like my body could not decide whether it liked Erfa or not.

Since last summer, Erfa has been increasingly problematic, causing me to itch all over. I put it down to its alledged reformulation (denied by company, but they have admitted to moving production).

I take NDT before getting out of bed in the morning, and wait about an hour to eat. I do, however, have a couple of cups of coffee before that, to wake me up.

I have read a lot about Thyroid-S containing fillers making it more difficult to absorb, but you are the only one saying that it is actually stronger than Thiroyd...I guess I could give it a try. Or maybe just raise Thiroyd...?

[shaws]

This was the method used for many years before blood tests were introduced along with levothyroxine. Also if we have T3 in the mix it will automatically reduce the T4.

web.archive.org/web/2010103...

The doctors gave us sufficient NDT to remove all symptoms as there were no blood tests at the time. The 'optimum' was when the patient was well with no symptoms.

[Hidden in reply to shaws]

Interesting, thanks!

[rosetrees]

My immediate reaction was the same as ruthi's, that maybe you don't absorb your meds properly. That makes me wonder if you have gut issues. If you do then it is possible that you are also deficient in minerals and vitamins. Have you had your Vit D, B12, iron, folate, ferritin levels measured recently?

Might be worth working on healing your gut to see if that helps.

[Hidden]

Yes, they were all lowish. I have been prescribed B12 shots, vit D, vit C, vit A, iron, calcium, magnesium supplements...you name it Any suggestions on how to heal your gut?

Also, I have found a pharmacist willing to order WP Thyroid even if the prescription is for Erfa. But given the price of NDT, and problems in the past with Erfa, I'd like to ask if anyone here has tried WP Thyroid, and how it worked for you? Also, is anyone able to compare it to brands like Armour, Era, or Thai NDT...?

[Hidden in reply to Hidden]

PS. Looking back, I don't know if it was a mistake quitting Medrol...? But I had been on it for four years, and never imagined it would be a life-long treatment...although, there are many conflicting views on this. Some seem to think that adrenal fatigue can indeed require life-long treatment, while others claim it should only be treated short-term and then weaned off once the adrenal glands are stronger. I also know some don't even believe that adrenal fatigue really exists.

The reason I was originally put on Medrol, and not HC, was because I tended to retain fluid, and the doctor said HC would make that worse. However, I was hypothyroid back then, although on 200 mcg of T4 daily, and that can also make you puffy, so I really don't know...but I still have several bottles of Medrol left, and could go back on it and see if there is any improvement...

I had cortisol levels tested last month. My results:

cortisol 8 o'clock 19.2 ug/dL (ref 7-25)

free cortisol 8 o'clock 14.1 ug/L (10-30)

So, my total cortisol levels looked better than my free cortisol levels, right? But, since I was on 4 mg of Medrol back then (I had taken 4 mg 24 h prior to testing), I guess you would expect my own adrenals to be somewhat suppressed, while Medrol itself (unlike HC) would not show up as cortisol on labs...? Or am I completely wrong about this?

[phoenix23002 in reply to Hidden]

I have tried all the various brands of NDT over the years. I was on 'old' Armour for 12 - 14 yrs, then the reformulation and I switched to the 'old' Erfa with NO problem. The 'new' Erfa made me light headed and dizzy after a few days. Tried thiroyd and thyroid S. The thyroid S didn't suit at all and thiroyd just didn't feel strong enough. I then tried Naturethroid (too chalky), WP and NP by Acella. NP was terrific but not all pharmacies stock it. The WP was just right and most all pharmacies here in the states have it in stock.

So, WP is what I have been taking for the last year or so. It only has 3 ingredients but, if left out of the bottle (like in one of those weekly/daily pill containers), it can get a little sticky/gummy but no problem otherwise. I haven't tried the 'new' Armour because it costs an arm and a leg compared to other NDTs.

One person's experience with any of the NDTs may not reflect another person's experience with them. It can be a very individual thing and responses can vary, person to person. I would suggest that WP is probably the least problematic since it has the fewest fillers.

[Hidden in reply to phoenix23002]

Interesting. For the past year or so, Erfa simply has not been working for me.

A couple of years ago, I found a pharmacy in Switzerland carrying NP Thyroid. They shipped it to me once, and I really liked it. When I recontacted them about another shipment, they told me they no longer carried any NDT as it "had been declared illegal by Swiss health authorities", and that no Swiss pharmacy could sell NDT anymore. This was back in 2014.

I have found a pharmacy in Belgium willing to send me WP Thyroid even if the prescription is for Armour or Erfa. I am seriously considering giving it a try. It's a shame it's not available the same way Armour and Erfa are in some Belgian pharmacies...

[phoenix23002 in reply to Hidden]

thecat..... It is a shame and for NDT to be outlawed?? That isn't just a shame, it is criminal. If you have any of the dodgy Erfa on hand, you might try this technique before giving up on it completely.. One person's experience from the STTM website:

Mike

January 20, 2016

I wanted to provide a follow up from my post of a few days ago. I had developed severe hypothyroidism after starting on my latest batch of ERFA thyroid, so I decided to experimentally crush the tablets before consuming. To do this, I just used the crusher compartment of a pill splitter/crusher to grind them into a fine powder, though of course a mortar and pestle or any number of other things would work fine. From there, I put the contents into an empty gelatin capsule before taking. The result: my hypothyroidism vanished completely and rapidly. Body temps returned to normal and I feel like my old self again.

Consequently, with an important caveat I tend to believe the ERFA rep who said that testing showed the product was fine. From a sheer tablet potency perspective, the assertion is probably true. Based on my experiment, the tablets likely do contain the usual amounts of T3, T4, T1 and T2–at least in the lot that my current supply was bottled from. However, there must have been a recent change with the tablet fillers or binders since thoroughly crushing the tablet bypassed the problem for me. Whatever changed in the formulation was definitely inhibiting the absorption of a substantial portion of the thyroid hormones. Perhaps some of it was getting locked up and passing right through the body. Who knows? Whatever the case may be, crushing it into a fine powder eliminated the problem for me.

stopthethyroidmadness.com/2...

[Hidden]

Ok, good luck! T3 only did not work out for me so, if I decide to go down that road, I will need to add some T4 as well. Or possibly ask my doctor if she'd be willing to prescribe Novothyral (synthetic combo drug) instead of NDT.

One reason I wanted to try NDT was because I believed it would raise body temperature. I had read so many glowing reviews on Thiroyd, and simply expected to do great on it...another reason my labs came as a shock to me.

[Hidden]

Yes, that sounds logical to me!

[Ruthi]

If you are converting T4, which is likely since you seem to do better when it is there, you don't have to worry about exact T3:T4 ratios, that is sorted out by conversion.

Supplementing individual nutrients is a poor second to absorbing stuff properly. I would suggest you work on your gut. There is lots of stuff about it on the internet, but as a start you need a good probiotic like BioKult, and to think about fermented foods like yoghurt, kefir, kombucha, sauerkraut (all of which you can make at home). Buy organic vegetables and don't wash too much. I think its Ray Peat who advises daily carrot salad made with unpeeled organic carrots so that you get the soil microbes, a cheaper alternative to the very expensive soil derived probiotics.

Don't go overboard on cleaning either - stop using antibacterial everything if you do, and just use basic soap and water. I have pretty well given up soap now, I only use it when I have been handling meat. The rest of the time I use water and a nailbrush. I don't smell, and I haven't had any digestive infections.

I don't think I am the only one to prefer Thyroid S to Thiroid. Its very much horses for courses, and thank goodness we have a variety of brands to choose from!

Finally, the general thinking about adrenal 'fatigue' is that it is rarely the adrenals themselves that are functioning badly. More often its a disruption of the complex pathway of adrenal control which can be affected by all sorts of things - including thyroid status, of course. My adrenals are doing much better nowadays with, basically, sensible bed times and meditation. But in order to get here I was also taking some adaptogens, and using light therapy to reset my body clock.

[Hidden]

I've mentioned this on here not long ago and it relates to whether or not your thyroid meds are actually able to do their job. A test for heavy metal toxicity showed very high levels of certain metals and despite taking a large dose of T3 my health has been getting considerably worse. In other words this toxicity was stopping the T3 from working so am treating this.

[Hidden in reply to Hidden]

Interesting? How do you treat this? Is it something you can do on your own, or do you need to see a doctor and use prescription medication?

I think I have some sort of absorption issue, also because I am deficient in so many minerals and vitamins despite eating a rather healthy diet.

[Hidden in reply to Hidden]

thecat - like yourself I'd been doing everything and taking everything that I should do re my thyroid but to no avail. Private doctor (from ThyroidUK's list) advised a heavy metal toxicity test (Genova) which involved taking DMSA and collecting urine over a certain period. He didn't seem concerned by my high readings and that rang alarm bells.

Following consultation with another doctor (yes I know, doctor shopping) he thought that all this toxicity was blocking the thyroid hormone. Now following his chelation protocol with DMSA although he wouldn't have advised using this, I had just bought two bottles and didn't want to waste it. Also being tested for Lyme disease.

Yes, your comment re absorption issues is a good one. I do wonder whether the multitude of vitamins and minerals that many of us take are actually working against us by overloading our system.

Isn't it complicated!!

[Hidden in reply to Hidden]

True, it's very complicated, and I doubt it ever gets any easier

I did find a product with good reviews on Amazon, and decided to order it. It is said to eliminate heavy metals from your system. There was another product which was much more expensive, and I might try that later if the one I ordered does not work out. But, judging by the reviews, it will.

In April, I am also scheduled to have all my mercury fillings removed and replaced by non-metallic fillings. All in all, I have seven amalgam fillings, dating from the 1970s.

[Hidden in reply to Hidden]

Good luck with having your amalgams removed and am wondering whether your dentist has offered any advice re chelation?

For what it's worth I had a mouthful removed (from the 60's drill and fill method) but hadn't paid any attention re chelation. In hindsight I should have sought advice, possibly from a naturopath, and so didn't chelate until the beginning of this year. You've probably Googled this and, if anything like me, scared myself witless by the weird protocols and stories!!

Thoughts from my private doctor was that DMSA can be harsh by stripping out other minerals although I didn't ask what his protocol would be. Fresh parsley can assist though and available from supermarkets.

Dr Myhill has some interesting thoughts on her website and worth reading.

PS Really glad I had mine removed cos the dreaded brain fog disappeared, hurrah!!

[Hidden in reply to Hidden]

No, my dentist has not said a word about it. At first, I said I wanted to think about having my mercury fillings removed, but then decided to do it, as I don't like the idea of walking around with heavy metal in my mouth. I also found out that my health insurance will cover part of the cost.

[Hidden]

Listen, do you or does anyone else know anything about this whole heavy metal poisoning thing, and how it affects you...?

The reason I am asking is because during the last year or so, I have had a really hard time eating meat. I have always eaten everything but, in the last year or so, I have had a really hard time stomaching beef and pork...I cannot tell you how many times I have cooked, only to feel nauseous and end up throwing it all away...and that's new to me.

Right now, the only animal thing I can stomach to eat is chicken and fish. I cannot eat turkey, but I suspect that is more related to knowing what those birds look like IRL...joking aside, for some reason, I am suddenly unable to eat beef or pork. I also have a hard time eating dairy products, the only exception being Greek yoghurt...

What I wanted to ask you all is if my sudden dislike for beef and pork (and almost any meat except chicken) could have anything to do with heavy metal poisoning...? I have to admit I am at a loss here, and have no idea where this distaste came from...as I have never had any problems with red or white meat before. Also, my doctor keeps telling me I need to eat meat as my iron and ferritin levels are lowish...

[galathea]

Both erfa and Thiroyd S are manufactured to have a longer shelf life. They need an extra process in the stomach to break them down.... I cant do this extra process and consequently, neither of them work for me. I do ok with thiroyd, or with naturethroid, though atm i am tired and was wondering if perhaps it might be my meds..... But equally i could have low iron..... Am about to work out the problem..... Just thinking about it atm....

Heres an article which explains about how Thyroid S differs from thiroyd.

.... You need to read to the bottom though.... thyroid-s.com/natural-desic...

G xx