Having being diagnosed as hypothyroid in November I’ve stated NDT (ERFA) as my first time on medication.
I’ve been warned to potentially expect some unpleasant side effects but I’m really scared at the moment what is going on.
I’ve been on it for 5 weeks and my symptoms have got MUCH worse. I e suddenly put on over a stone since starting it (mucin I presume) and my feet are so painful and burning I’m literally crying with pain. I sudddenly can’t sleep- having never struggled with that before. But the thing that is really worrying me is that my knees swollen up massively and I can hardly even shuffle anymore. Onset of quite suicidal depression - not usual for me. Do I need to be concerned or are these usual things that happen when starting medication .
I’m currently on 3/4 grain. Started off at 1/2 grain which I did for week and was making me emotionally feel dreadful- so cut down to 1/4 grain for 10 days, then 1/2 grain for another 10 days then I’ve been at 3/4 for last 10 days.
Any ideas/ help so appreciated
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LucyYoga
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NDT is not for everyone LucyYoga. I know you have had previous reservations about taking Levothyroxine, but it is effective for the vast majority of those with hypothyroidism. My muscle pains were intense prior to treatment with Levo, but resolved when I was optimally medicated.
Despite my best efforts I just couldn’t get on with NDT. Am now on synthetic T4/ T3 combo which is working much better. Incidentally I’ve got 3 other friends who tried wit NDT the same sort of time as me as none of them got on with it either. We are all on synthetic combos now.
Maybe something to do with potency or batch purity now, although they should all be rigorously tested to USP standards. It’s a mystery!
thanks…. I’m currently doing 1/4 grain raises. Did you find during your journey to your optimal therapeutic dose that you had periods of feeling more hypo?
I was put on Levo initially, I was extremely poorly by the time I got diagnosis and treatment. My thyroid disease was very advanced. I have atropic autoimmune thyroiditis which starts off like Graves’ disease, hyperthyroid interspersed with increasing bouts of under activity until the hypo predominates with the odd crazy hyper phase, so it’s one hell of a roller coaster ride. I had mixed symptoms some were classic hypothyroid others classic hyperthyroid. I stuck it out for 2-3 years years on Levo feeling utterly wretched . I had no functioning thyroid left it had atrophied to virtually nothing so my symptoms on Levo were all serious hypothyroid ones bar the horrible heart pains and chronic anxiety.
I decided to try NDT in utter desperation as I felt like my life was not worth living. I was tired, fat (after being pin thin all my adult life) freezing cold, depressed and very stupid - my mind just did not work properly. I followed the TPA guide to dosing and had almost immediate improvement, on just 1/4 grain I began to feel whole again, not just like a worthless perfunctory thing. The colour came back into my life and the depression began to lift. I kept going with the titration but had to split the dose or I felt odd - anxious and jittery - must have been too much T3 too soon. My journey was very smooth after that, I got to 1.25 grains and felt quite normal again so stopped at that. The hypothyroid symptoms improved quickly. I was warm for the first time in decades, the depression evaporated, the brain fog lifted and the weight fell off me (I put on 4 stones on Levothyroxine). So I have stayed on NDT ever since. I have had to up the dose. I had a blip a few years after starting it and needed to increase the dose - no idea why. I take 1.75 to 2 grains a day (I usually drop the dose to 1.75 in summer) I am now getting annoying hyper symptoms - eye problems and itchy shins but this will be due to antibodies not medication. I always thought I had TED but no one medical is interested in looking into it. The itchy shins are caused by pretibial myxeodema and I had it really badly before I was diagnosed. So excruciatingly itchy I’d scratch them until they bled. It’s really disappointing they have both resurfaced over a decade later, but it can happen . My thyroid can’t be affected because it’s defunct so there’s nothing to attack, but my eyes and shins are still ripe for more torment! Hopefully they will go back into remission but it’s been over a year now waiting for them to dissipate. I have never had depression again since I started taking NDT which is amazing 😎
What fun and games it is to have thyroid disorder eh?
Thankyou for sharing all that. I’m so sorry you’ve been through all that- and to feel like that for 2-3 years. It is a dreadful disease - I’m still reeling from the shock that this is my life now. Just over a year ago I was about to go off to India to do my yoga teacher training. Super fit. Swimming every day, walking everyday and doing 2 hours of string yoga every day- headstands, handstands .. the lot.
Now I can’t even walk properly.
I’ve always been skinny and athletic and strong and it’s soul destroying to see my body morph into a fat blob despite eating super strictly .
I’m glad though that I’ve straight away got on with finding a good thyroid specialist whom I feel is happy to treat symptoms rather than just be doggedly attached to lab results.
As I mentioned before I’ve only just started on medication as between being diagnosed as ‘subclinical ‘ 14 months ago, and until 5 weeks ago I was working with functional nutritional therapist to try and put it into remission naturally. Unfortunately my thyroid function just got worse (despite a period last spring/ summer of feeling much better).
So I now find myself on meds but trying to fathom out the aetiology of my symptoms.
Have managed to bring my appoitment with my specialist forward to next weeek so hopefully she can shed sone light.
have a look at this and see if its helpful. I don’t know if you had/have a goitre I never did and that’s what the ‘atropic’ (autoimmune thyroiditis) refers to.
It’s not always an easy read but it’s worth trying to learn what you can from all the useful blog posts (there are a lot now!) it’s excellent up to date info .
The private endo I went to see in November was pretty useless and wholly disinterested in what the exact diagnosis was. With a TSH of 28 and equally dire T4,T3 and TPO antibody, he simply said its mild hypothyroidism and refused to do a scan despite my request. He just looked at my thyroid and said its not protruding so there isnt a problem! His approach was wait util its bad enough then we will scan rather than lets look so we can get an idea of disease progression. And this 'Professor' used to be head of St Barts endocrinology! Needless to say I didn't take it any further with him.
Just found someone who seems less of a dinosaur and less dogmatic.
OMG overt hypothyroidism is mild what a complete tosspot. I’d like him to have a TSH of 28 and see how mild that feels . Glad you ditched that sadistic fool. I was treated at guys and st thomas’s at least the one I saw there was humane.
It sounds like you may well have atropic autoimmune thyroiditis if there's no goitre once uoon a time they knew all about it, but now we are completely forgotten to science and lumped in with Hashimotos, which is a quite different kettle of fish . I suspect my lack of goitre and being thin was why I did not get diagnosed until it was nearly too late. But at least the endocrinologist I saw did know what type of thyroid disorder I had and that it was unusual.
But at this time ,obviously no-one knew anything antibodies ,of any sort .
We now know that there are actually 3 different kinds of TRab (the antibodies that cause Graves Hyperthyroidism)
~ 'Stimulating' TRab ~ these act like TSH and stimulate the thyroid to make to much T4 / T3 (Hyperthyroid)
~ neutral TRab ~ (ignore them)
~ 'blocking ' TRab ~ these block the TSH message from getting to the thyroid. so it doesn't make enough T4/T3 (ie. hypothyroid ~ but different to Hashimoto's Thyroiditis. In Hashimoto's Thyroiditis (without any TRab, just TPOab )... the TSH message CAN get to the thyroid , but the thyroid can't make enough T4/T3 because it has been damaged).
Some writers seem to call this 'blocking TRab' form of hypothyroidism "AAT ~ Autoimmune Atrophic Thyroiditis". and Some have referred to it as "Graves Hypothyroidism"
In AAT the thyroid seems to significantly 'shrivel up /shrink' ,as opposed to 'becoming fibrous / becoming a little bit smaller' as is common in the later stages of Autoimmune Hypothyroidism (hashimoto's)
AAT is also capable of causing fluctuating thyroid states between Hypo and hyper . Euthyroid and back again ..as the levels of TRab fluctuate/ disappear over the course of a patients life .
I don't think anyone is clear whether this (AAT) is what Ord was looking at .. or if he was looking at a variant of Hashimoto's that just doesn't have a Goitre.
The subject interested me a lot ., so it's not for want of trying .. but it is more or less impossible to find much clarity on definitions of the different varieties of autoimmune thyroid disorder .. or at what point something is "a different variant" vs "a point on the spectrum of a disease".
As usual you are a font of knowledge. .. will read properly when brain less mushy. Just wanted to say that I read a lot of what you post/ reply and am really grateful to you and for what you share. And done with such lovely humour too a lot of the time. Thankyou 😀
I've never experienced bad symptoms like you are having LucyYoga and maybe Erfa Thyroid just isn't suiting you. Unfortunately they have reformulated many NDT's over the years much to the annoyance of lots of people and perhaps it is one of the fillers that is not agreeing with you.
LucyYoga, Your symptoms are quite likely to be because you're not getting enough thyroid hormone. 3/4 grain is a low dose. It's also possible that the ratio of T4/T3 isn't right for you. If you have any levothyroxine, try adding 25mcg alongside your 3/4grain NDT, to bring your FT4 up.
also red apple, just so I’m understanding this correctly… when you start taking exogenous hormone it shuts down your endogenous production? So effectively the dose I’m currently at is not high enough to be adequate replacement hence me being more hypo than I was before tsking it? Have I got that right? Thankyou
That’s correct ….and any hormones that contain T3 lower TSH quicker
Yes NDT includes Ft3 ……but that’s a double edged sword….because TSH reduces quicker
If been hypothyroid a long time before diagnosis (and for many of us that was likely at least years if not decades ) we need to start SLOWLY and the advantage of levothyroxine is it’s slow to change TSH
Standard starter dose levothyroxine is 50mcg ……we take it daily and by retest at week 6-8 after starting the body is ready for next dose increase
Different brands of levothyroxine suit different people
Many people start on levothyroxine and do fine on just levothyroxine
Many people find once at or near full dose of levothyroxine their Ft3 remains low …..then they might look at adding T3 ….or some NDT
Do you have Hashimoto’s?
NDT can exacerbate autoimmune response…..it certainly doesn’t suit everyone
NHS primary drug is levothyroxine - approx 2 million people in U.K. on this
Adding T3 (once levothyroxine dose is near its max for you personally) is increasingly offered on NHS. Currently approx 10,000 patients on this in England, usually as small dose ALONGSIDE levothyroxine
Many more get T3 prescribed privately if/when they eventually need it
NDT is popular without prescription for many people but also because it is (or certainly was) easier to get
But NDT doesn’t suit everyone
It’s all trial and error what suits each individual person
I had a similar experience. I started at 30 mg but my symptoms remained the same. Naturopath doxtor prescribed 60 mg., and l started to feel better. Cold symptoms came back and NDT was increased to 90 mg. I still have occasional chills but l feel better than l did previously. I hope this information helped.
I have been on NDT for many years and have never had any of the side effects you mention. (I was on Armour for years and when they changed the formua in 2009, it just stopped working, but they corrected that, and I was on it again for years.) . .. Your symptims sound like you aren't getting enough, thyroid??? ...... Right now, I am taking Thyroid S. I find it work better than anything else for ME. ... I am thyroid hormone resistent, so I literally take 10 times as much as you're taking. IE: 10 grains a day. ... I have been on this dosage for several years, and am doing well on it.
Thankyou - yes I’m new to all this and feel that it’s just that I’m not on enough and therefore more hypo. Have appoitment with my thyroid dr next week so guessing she will raise it. Thanks
Thank you for this information, on your dosage I am on Thyroid S as well. My labs were way off on three grains (but regardless I feel so much better than Synthroid after my thyroidectomy). Do you know your exact reason for your resistance?
I have a family history of hypothyroidism. ... My Father died at age 56. While he had never been diagnosed as hypothyroid, from what I now know about the disease and the symptoms he had, I believe that he died from mixedema coma. His Mother died at age 57. He had a sister that died at age 57. Each died having symptoms that we now know are indicators of hypothyroidism. ... Had I not found a really wonderful doctor, that recognized my hypo symptoms early on. I would probably also have been gone by my late 50's.
So very sorry to hear, Gingersnap. That is truly both frustrating and sad Good thing your doctor recognized it all.
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Besides your family history, do you have any indication of why you need such a high amount of thyroid hormone? Did you need that with levothyroxine as well? Or were you never on that?
God that’s sad, and to think there was treatment that would have saved them. But I nearly died that way too. It’s shocking that it voukd hapoen in the modern era to anyone. Thank goodness we got the help we needed. I have a gene for thyroid resistance but seem to be ok on average dose of thyroids.
I don't have experience with ndt, but when I started levothyroxine, my symptoms became worse at each 5 week mark. My dose was increased every 6 weeks. I would feel better, then much worse. Once I was near the correct dose, my symptoms eased up much more. It took several months.
Hi I can only tell you what happened to me - I did not get on well with NDT either Armour or ERFA for some reason - constant sweating - dripping off me - I think it puts a lot of a strain on the adrenal glands - as problems with knees are adrenal gland related. Also your weight gain could be cortisol building up in the body to compensate. It might be that it is too strong for you - I would say so - I had the same happen to me - here is a document that tells you what happens with the joints etc. with low adrenal function.
Adrenal Gland–Related Muscles
Dr. Goodheart identified five specific skeletal muscles which are related to adrenal gland function. These are 1) sartorius, 2) gracilis, 3) posterior tibialis, 4) gastrocnemius, and 5) soleus. There will be weakness in one or more of these muscles when the adrenal glands are malfunctioning. Because of the attachments of the sartorius and gracilis on the pelvis, (sartorius—anterior superior iliac spine; gracilis—pubic ramus), their weakness in persons with adrenal stress problems may allow the sacroiliac joint to subluxate posteriorly. The sartorius and gracilis stabilize the innominate (one side of the pelvis), holding it in an anterior direction. Many persons with hypoadrenia seek chiropractic help for the care of sacroiliac pain and/or low back pain which is due to the lack of pelvic stabilization normally provided by these muscles.
The sartorius and gracilis have a common insertion (along with the semitendinosis) on the medial side of the knee and rotate the tibia medially on the femur. When weakness of these muscles occurs, there is a loss of stability on the medial side of the knee. The sartorius and gracilis (along with the semitendinosis) act as dynamic ligaments, protecting and supporting the medial knee joint during various ranges of motion. Their function is particularly important in situations where the knee ligaments alone offer inadequate support.
It is very important to check for hypoadrenia in any person with knee problems. One can see how one hypoadrenic person will present with knee problems and another with back problems, and some persons will have both.
"Due to the relationship of the posterior tibialis, gastrocnemius, and soleus to the stability of the foot and ankle, many hypoadrenic persons will complain of symptoms of tired feet, weak ankles, or aching calves. The posterior tibialis holds up the medial longitudinal arch of the foot, especially during gait. In some persons exhibiting hypoadrenia-related weakness of the posterior tibialis, the medial arch will drop, causing a pronation problem and strain to the foot and ankle. The one common factor in persons with the above-mentioned musculoskeletal complaints will be the weakness of one or more of the five adrenal gland related muscles accompanied by improvement of their symptoms following treatment of the adrenal glands.
The adrenal gland cortex produces three major categories of hormones:
I am now on liquid T4 with some T3 and that is suiting me much better.
The suicidal thoughts could also be low adrenal reserve. I always know if my adrenals are low by my knees - and the burning feet are also related - can you take Vitamin B complex which should help boost the adrenals - I can tell you a good product if you wish - but not sure who has prescribed NDT for you but you should make contact and discuss as this is not something that should be happening. If something makes you feel worse can't right can it?
Thankyou so much. That is really helpful and useful info.
Yes my ankles and achilles very painful too. I suspected low adrenal function and am doing 5 point cortisol DHEA test tomorrow- was just waiting as has to be done at certain point in your cycle.
And the weight is mainly around the tummy- ive suddenly developed a big spare tyre from nowhere.
I wanted to check will all you guys who have more experience of all this than I do before contacting my dr. Wasn't sure what was pain that was part of the process or something I need to be more concerned about.
Ive just emailed my Dr- she is a private thyroid specialist who is recommended on TUK list of practitioners so I trust i'm in safe hands.
Will see what she says. Im already taking B vits plus multiple other ones and having adrenal cocktail twice a day and taking liquorice supplement. Ive bought thorne adrenal cortex in anticipation of needing to supplement when the cortisol panel comes back.
But i would be grateful if you could tell me what you take?
Hi there - personally I would not be taking as many supplements as you are doing - you have to remember that the kidneys and liver have to clear such items and the metabolism will be sluggish with a thyroid disorder. Liquorice is - as you know something that raises your blood pressure - but I certainly wouldn't take it. All I take now is a complete B - quote a low maintenance dose and Vitamin C which is vital for the adrenal glands - the highest amount of Vitamin C is within the adrenal gland structure to make the hormones needed. I then might take extra bits here and there if I feel I need them. But my motto is easy does it.
Makes sense- may be total overkill... so petrified of being deficient that i'm taking about 20 different supplements> How much vit c do you take per day? Currently taking biocare B compex which my nutritional therapist recommended- but any recommendations are gratefully received
Biocare is what the professionals recommend of course and I have taken all brands in my attempt to find the best for me. I like Natures Best which is a company that Biocare bought a few years back. I take their lower dose B complex - but you can get higher but be careful as they will stimulate the adrenals in the wrong way to produce adrenaline etc. - same as C if you take too much - I take no more than 1,000 mg and not slow release either.
My personal story with NDT is opposite to the suggested administration. So please know that the advice people give about going slow is great advice, it just didn't work for me.
NDT was not my first hormone replacement. I started on Synthroid after a thyroidectomy. I was up to 225 mcg on that & could hardly get through a day.
When I switched to NDT I did start very slow and felt horrid. Around the two week mark, I rolled the dice and increased up to what I knew would be closer to my final dosage & felt instantly better. Once again, this is against advice and might not even be your issue but for information purposes.
I thought I might as well try because at that point (on such a slow start for my body)I was feeling that NDT was not for me. And it must definitely was and is - I would have missed that fact.
All the best figuring it all out. It is not easy at times.
I am not quite there yet but Synthroid was so horrendous for me even an in progress level seems sweet! And of course made me realize that NDT was probably a good choice for me afterall,not something to toss and start again with something else. Plus a lot of members have shared where they were with levothyroxine before starting NDT, and that judgement is not a bullseye by any means but it certainly helps. It was a lot closer than the conversion charts or any pharmacist, that's for sure.
same with me of I felt dire on Levothyroxine, taking NDT was like finding myself again after a very long absence & without the depression - it evaporated on NDT
Thank you. I am on Thyroid S as well, but I am on my first bottle, so nothing to compare. I did have some crazy first labs on it, but it could just be from being undermedicated. I am continuing along and will do some more labs soon, as I do feel improvements.
I just had to reorder. I am praying it makes it to me (border issues). As I can't take either the financial loss or the actual loss.
Thank you for the gene information, I am going to plug them in and see if I can get some information.
Thankyou. Interestingly I have woken up feeling a significant improvement. My feet have stopped burning, my mood is MUCH better and I feel a little bit more mobile.
I’ve managed to bring my appointment with my thyroid doctor forward to next week, so we’ll see what she says. My gut from the beginning of when I got really ill kept saying that for me NDT was going to be the best route. It still does. Hence my wanting to start on NDT not levo.
I feel intuitively that it’s simply the fact that my dose is too low, not that I’m intolerant to it.
Fingers crossed I start noticing real changes when I increase the dose.
Wow posthinking01 this is very interesting, thanks for sharing this. The back pain describes my 30s, the knee and ankle decscribes my 40s. Could you recommend some further reading or what I should be testing for and doing to improve?
LucyYoga your post/threads are fascinating, I’m very curious to see how things go. Wishing you well as you find what’s right for you.
Actually starting to feel marginal improvements over last couple of days. I think my initial horrendous reaction to NDT may be due to the fact that I’ve never taken any form of thyroid hormone supplement before. I’m not sure, but it seems many people start off on levothyroxine before they change to NDT. I’m don’t think many people start on it like I have. So as an first introduction, considering it contains T3, i believe it probably has a stronger impact on the body- and at least for me has exposed long standing cortisol issues which I am addressing. Speaking to thyroid doc this Friday so will let you know how it goes.
Apologies for delay in reply - Vitamin C is such an important item for the adrenal glands but once again don't go mad with it as it will turn to adrenaline if unused within the adrenal system.
When was your last blood test? What you just described is exactly what happened to me after my thyroidectomy and was started on Synthyroid….. I have a laundry list of diagnosis and not one doctor has even bothered with possibility its thyroid related or something to do with thyroid meds because my labs are always in range… it could be your allergic to something in the pill and your reacting to it and maybe your taking too many supplements right now.
hello- blood test 6 weeks ago just before starting NDT and I’ll get results from test last week on Monday. Just emailed my thyroid specialist and have got earlier appointment next week.
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How should I increase my NDT now?
Suppressed TSH and getting optimum on NDT
Starting to struggle. Advice please!
Results on 2 grains compounded NDT and 60mcg T3...
