Hi all,
I’ve been on Thyroxine for 15 yrs (doses between 25mg and 175mg over the years) and have never felt well on it. Having been unable to find a doctor who will prescribe NDT in the U.K, I’m now looking to source it myself.
If anyone knows of a reliable online source for Armour/Nature-Throid or similar WITHOUT prescription, please be kind enough to private message me. Thanks so much! 
Rebecca
Before you start you need full Thyroid and vitamin tests to check your current levels
Very important to have good, not just somewhere in range vitamin levels
For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.
Essential to test thyroid antibodies, FT3 and FT4 plus vitamins
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
thyroiduk.org.uk/tuk/testin...
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's. With Hashimoto's it's even more likely that vitamin levels are low
Thanks SlowDragon Yes I have had Hashimotos diagnosed with raised antibodies.
Have had FT3 tested along with vitamin levels on several occasions. All supposedly fine and within range, yet I never feel well on Thyroxine and docs will not consider any alternative treatment. So time to take the bull by the horns and source my own NDT I feel!
Always get actual results and ranges. What is often said to be "fine" are often any thing but
UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need enhanced access to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up. They can make nominal charge for printing but many will do so for free (£10 max and can not charge at all after May 2018)
As you have Hashimoto's are you on strictly gluten free diet?
Hashimoto's affects the gut and often leads to low stomach acid and then low vitamin levels
Low vitamin levels can affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Ideally ask GP for coeliac blood test first
thyroidpharmacist.com/artic...
thyroidpharmacist.com/artic...
amymyersmd.com/2017/02/3-im...
chriskresser.com/the-gluten...
scdlifestyle.com/2014/08/th...
drknews.com/changing-your-d...
thyroidpharmacist.com/artic...
Vitamin D should really be at least above 80nmol
B12 towards top of range and folate not near bottom of range
Ferritin half way in range
Please let us know your recent results. Often patients think Levo isn't working for them when it's down to other things, not being given enough, low vitamin levels or even not taking them correctly. At least if we find one of those the problem then at least you can make a more informed decision.
Hiya! I was prescribed Levothyroxine years ago when first diagnosed. After a few years, I became pregnant with twins which shot my thyroid function to the point I went from 100mcg to 400mcg in 6 months. After I had the babies, I was weaned off the Levo back to 150mcg, but during that time, I felt at my lowest with hypo symptoms and started to put on more weight than I was when pregnant. I becoming increasingly low due to this and shattered dealing with two premature babies who didn't sleep much. I felt myself becoming sicker physically. My GP played with my dosages but the more I had, the worst I felt. When I paid privately to have my antibodies and levels tested, it stated my t4 was ok but my t3 was very low, and my antibodies were through the roof. My GP wouldn't hear of it and wouldn't address the t3 problem, so I decided to try NDT and self medicate plus try a gluten free diet, which is recommended for auto immune issues like thyroidism. I started low and built up after retesting my levels. It has taken me several years, but I have to say, my levels are the best they've ever been, I've lost all my pregnancy plus plus weight, and feel much better than when I was on Levothyroxine. I would recommend NDT due to my own experience even though it's costly when having to self medicate due to Drs lack of understanding and willingness to help. I use Thyroid-S which is generally cheaper than the others I think. If you are interested in trying Thyroid-S, then message me, and I can give you a reliable supplier. It's worth a try, with the addition of trying a gluten free diet to help with blood levels and eleviate symptoms.
All the best 😊
Thank you so much! Currently my TPO antibodies are over 1300! 😱But I’ve just started NDT (Armour) two weeks ago and am hopeful this might help me turn a corner. It’s so encouraging to hear stories from other members who’ve had success with NDT so really appreciate you messaging me 😊Glad you’re feeling much better on it.
Did you have any hiccups along the way or words of advice about building up the dose? After 2 weeks of feeling ok on a low starting dose, suddenly had a big crash at the weekend with every hypo symptom that could be thrown at me! Have been in touch with my private functional doc and he’s said to up the dose from 1/4 of a grain twice a day to 1/2 a grain twice a day. So we shall see!
Am currently on the AIP diet, so gluten free as well as dairy, sugar, alcohol, beans etc!! (All the nice stuff!) 🙈
Hi, yes it was a bit hit and miss to start with as the only advice I could access was this forum. I just went all in myself by cutting the Levo one day, took nothing for two days to get it out of my system , and started on 1/2 grain for 5 days and built up by 1/2 grain a week. I have read some of Dr Westin Child's advice regarding NDT and noted that roughly 2 grains equal 100mcg of Levothyroxine so I worked on that as I was at my best on 100mcg Levo years ago when first diagnosed. It was all a case of trial and error because I had to limit private testing due to the costs. I am now on 2 1/2 grains and my thyroid blood results are better than they ever have been. Fortunately, I have found a GP who is understanding about me self medicating with NDT and has agreed to support me, in secret though to guard his own job... He writes that I buy my own t4 and t3 only and doesn't mention NDT in my records). He has also agreed for me to have a t3 blood test as well as t4 and tsh once a year as I need to get a guide on how to dose. He leaves me to dose myself and won't intervene stating he doesn't know enough to guide me on it. This is fine,
I 'm just glad he is meeting me half way, very different to his colleagues in the practice and the area's Endo specialist who don't agree with t3 in any form and feel NDT is voodoo treatment dished out by Shamans 🙄. I am not sure about my antibodies of late due to testing costs, but being gluten helps, and I sometimes take Myo inositol which has been clinically proven to reduce antibodies when taken with Selenium. I may have a minor intolerance to dairy as I can only really take skimmed milk and limited quantities of cream and cheese etc. I have tried an elimination diet recently but had worse reactions to the dairy free milks like almond, coconut and gluten free oat milk, all of which made me feel nauseous and bloated. I couldn't stand rice milk at all, and I avoid soya completely. Since doing the diet, I sense I am somewhat intolerant to nuts and gluten free oats. I'm not bothered about nuts at all, but I was disappointed with the oats as I love them and was consuming larger amounts on my gluten free diet. So oats are out for me. After doing that, I introduced skim milk back into my diet and had no significant reaction apart from a little gas a while later. I know I have to limit it, but the thought of never having a latte (I love coffee, decaffeinated mind) was a bit too much to bear for me. All these dairy free alternatives seem to turn my stomach unfortunately, so I have decided not to deny myself totally of a latte here and there. You are very strong willed if you can cut out dairy completely. Perhaps you are someone who has embraced these alternatives and didn't have negative reactions like me?
All the best on your NDT journey. If Armour doesn't suit you after trialling it for a while (people fare better on different types), it's worth trying another one.
Did you have days when it felt like you were taking a step backwards, symptom wise? 🤔And did you find these improved when you upped to the next dose?
You’re very brave self medicating, good for you! 👍🏼I ordered Naturethroid from overseas and then chickened out!🤦🏼♀️ I finally bit the bullet and paid to see a private doc who would prescribe Armour. It’s costing a lot...I just hope it pays off in terms of health benefits. Glad to hear you have a GP who is supportive (as far as he can be without risking his job). I think I may be in for a rough ride when mine discovers I’m taking NDT, the NHS does frown on it don’t they!!
The AIP diet is pretty hardcore and unfortunately excludes nuts (so almond milk is out) and even coconut milk contains rice, so that’s a no go too. It excludes all grains, not just those containing gluten 😱😱To be honest, I’m not sure WHERE I’m finding the willpower from! 🤷♀️Sheer desperation to feel well again I think! Eggs are the hardest things for me to eliminate, I love them...
I did have days where I felt more weary and I still do from time to time. I just think it is the nature of the condition. There's lots of factors other than thyroid problems that can make you feel rough. If your thyroid issue is auto immune, then one of the most common side condition is candida overgrowth which happens when the immune system is weaker. This is a problem I've had. As a lot of the symptoms are the same as hypo symptoms, we can think it is our thyroid playing up but it can be a fungal overgrowth or adrenal fatigue. I am trying to combat candida with probiotics and antifungals, plus high dose supplements, but my body cannot seem to tolerate high dose vits, and supplements very well and I have unpleasant reactions, so again it's all trial and lots of error for me. Regarding your diet, it does seem extremely strict, and are you making sure you are having enough nutrients? It's a shame you have cut out eggs, as they are rich in selenium and vitamin D which are essential for t3 production. Brazil nuts are also high in selenium as well. If you are not finding a drastic improvement in your health and wellbeing after doing this diet for a while, it is worth reassessing whether it is the right eating plan for you. There is no point in denying yourself healthy food groups if it isn't making a significant difference in how you feel. When I cut out every thingbfor this elimination diet apart from dry meat, fish, veg and fruit, I started to find those foods more and more unpalatable, as I struggle with eating the same things day in and day out. The thought of restricting my diet like that permanently, nauseates me. Gluten free, grain free and limited dairy and sugar is enough for me to tolerate. You should start to feel better as you increase your NDT, just go slowly by a week at a time to assess differences in how you feel. Work up to roughly the equivalent to what you were on Levothyroxine with approx 2 grains being equivalent to 100mcg Levo. If your not feeling improvement, then it could be other factors like nutrient deficiencies, candida overgrowth or adrenal fatigue.
Hope you feel improvements soon. Listen to your own body rather than just going on what professionals say. In my experience, that way of thinking and action has proved me better in the long run. Don't be afraid of trying out different things in the hope of getting well. It's a shame we have to act as our own doctor in order to get well, but sadly that's the state of affairs when it comes to thyroid problems. Those of us who spend our money treating ourselves, should get a rebate on our National Insurance contributions or other Insurance payments if outside the UK, we are saving the healthcare system money.
Well off my soap box I go 😄 and best wishes to you! 😊.
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