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Many people feel scared, worried, anxious, confused and unsure on whether to make the change from T4-only medicine like Levothyroxine and Synthroid, to NDT.
Below are some real-life stories from people who have made that switch, who have gotten in touch with me to share their stories, so you can see how it has affected and changed their lives.
I must state that none of the below stories, given by other people, are necessarily reflections on my own thoughts, ideas and opinions.
“I am 62 years old, I had a hysterectomy at 42 due to severe PMS all my life.
After the recovery from the op I noticed I slowed down, I slept so much, I put on 3 stone in weight in a matter of months, I was so upset as I was always slim and walked everywhere. So many visits to GPs, why am I tired all the time? My brother and sister both had thyroid problems, could I have it?
I was always told my levels were OK, I didn’t know about TSH levels in 1996. I had a lump growing near my Thyroid, twice in 10 years I asked the GPs to look at it. Just fat they said. I went to see an ENT consultant as I was snoring so loud I was keeping my husband awake. He took one look at my neck, did a biopsy and two weeks later I had a TT, it was a goitre, the consultant said it was very big. Non cancerous.
I was given Levothyroxine and that was it, at one point I was taking 300mg of thyroxine, I was getting palpitations so GP reduced my dose. It seemed no matter what dose I took I felt ill, so tired, I had to sleep every 2 hours, very cold, no energy, no life.
I now realise I wasn’t converting the T4 into T3. Another 7 years of misery until I found Thyroid UK. I joined the site and couldn’t believe there are so many people with Thyroid problems. A member recommended an endocrinologist , I saw her and she added some T3 to my Throxine, instant results, I felt I had come alive, I went out with my husband for the first time in 17 years.
The endo always like to get gut problems sorted out first with various tests, my GP refused to do them, but I strongly believe and I know a few people who have gone gluten-free and it has been a big help.
I have spent 3 years on various combinations of Thyroxine (T4) +T3, Armour + Thyroxine, Armour. I always felt good when I started a new combination but it wouldn’t last long, all hypo symptoms came back.
So I currently take 3 Grains of Natural Throid (NDT), and I feel the best I have in 20 years.
Sometimes it can take time to find the right medication, it took me 3 months to slowly increase 1/4 grain every few weeks until I found the right dose. When i felt my symptoms return I took too much too soon I panicked and felt terrible, a lesson I learned the hard way. I am a very anxious, shy, nervous person but having felt ill for so long I feel proud to stand up to all medical professionals.
I also have a hiatus hernia, gastritis, and acid reflux, I have been taking PPIs for years, a member on the Thyroid UK site suggested I could have low acid which is another symptom. I do have low acid, have stopped taking PPIs and feel lots better.
I think if you can tolerate Thyroxine you are very lucky, there must be thousands of people suffering because GPs and Endos do not know enough about Thyroid and its many problems. Another very big problem I had was aching joints, I felt like an old woman, I could hardly walk upstairs, all gone thanks to NDT.
My TSH is suppressed at 0.05, but my T3 levels are fine which we know is the important test. I would also mention, do not let GPs bully you when your TSH is suppressed if you feel OK on your NDT dosage. I’m lucky i have found an understanding GP, he said i seemed to know what I’m doing so he will leave me to medicate myself. I pay to see a private endo who prescribes my NDT which I have to pay for myself.”
“Since I was 16 years old, I have suffered with anxiety and depression as well as digestive problems. I was diagnosed with irritable bowel syndrome after many tests that excluded other illnesses including gastroscopy, barium X-rays and even a stay in a children’s mental health hospital and the Priory where I was thought to be suffering with an eating disorder due to my weight loss.
In March 2005 when I got to university, I started having palpitations, had shortness of breath, itchy skin,always hot and my eyes were sore and gritty. I went to the doctors and was told I was “unfit and had scabies”! I was told to do regular exercise and given treatment for scabies! I eventually went to the opticians who straight away said that my eyes were protruding and asked if I had every been tested for hyperthyroidism,which I obviously hadn’t so went to get tested and funny enough it came back that I had Graves’ disease!
I started on carbimazole on a block and replace regime and went back and forth to doctors trying to get my levels right but even when my bloods were “normal” I was so itchy and irritable. There are consultant concluded that I must have been allergic to one of the ingredients in the tablet so tried me on propylthiouracil in the hope my thyroid would return to normal but unfortunately it didn’t. The consultant recommended radioactive iodine treatment which in 2008 I had.
After the RAIT I became hypo and the consultant started me on levothyroxine. Again I went back and forth to Drs and endocrinologist trying to get my levels stable. In 2012, My TSH normalised so I was fixed!!! Well according to them I was, although I still had worsening fatigue, brain fog, painful joints etc etc. When I went back to GP and said I wasn’t right, I wasn’t believed and told it was all in my head. They increased my Levothyroxine dose and on several occasions I was offered antidepressants. They wouldn’t test my T3 levels and I didn’t know what to do.
In April 2013, enough was enough. I researched private consultants and found a consultant in London so went up to see him. It was very expensive and I think I shouldn’t have to pay but it was the only option. He told me that TSH on its own is not reliable indicator of thyroid function,and looking at my history i had been medicated completely wrong and he was disgusted. He tested my tt3 and ft3 and found that my body can not convert t4 into t3. He tested my Vitamin D and came back very low. He started me on t3 (aswell as t4) and vit d. I have to say my GP has prescribed t3 on the NHS which apparently I am quite lucky, and they do whatever my private consultant requests.
The t3 and vit d helped but I still suffered with fatigue, painful joints etc etc but,after further investigation (I was positive for glandular fever and had shingles 2014) he diagnosed me with post- viral fatigue. For a while I tried to manage, cutting down my hours at work and resting when I could.
In Feb 2016 after weeks of feeling myself getting worse but carrying on, I was signed of work for 6 weeks with debilitating fatigue, no energy (after a shower I was totally exhausted), my joints and muscles hurt so much and I looked awful (so my partner said!). There was no way I could get up to London and after the GP had done tests to rule out lupus, arthritis, Lymes disease (to name a few), so I decided to look for a private doctor nearer to home (Maidstone, Kent). At the same time I found the amazing Facebook group (under active thyroid advice & support) and learnt so much from it. It taught me that I have to be in charge of my own health and in the time I was off work, rather than get depressed, I got lots of books (recommended by Rachel) and read them.
I went to see the consultant with a clear plan of trying NDT. He agreed it was a logical step and put me on it. I have been on Armour for nearly 4 months and feel the best I have for so long. I also take vit d, selenium ,evening primrose, vit b complex, vit c and holy basil (although I haven’t done the saliva test) to support my adrenals. I also listen to my body more now and am kinder to myself ,I believe in a work life balance being very important to everyone but especially when you have a chronic condition. I am feeling very positive about it all really and if I could offer one bit of advice it would be do research, be in charge of your own health and fight until you get it!!”
“I changed from Levo to Armour (NDT) 2 years ago. It was a fight to get Armour and to be listened to but I fought for it and am doing much better. On Levo my weight went up over 2 stone and I never had any issues with weight or healthy eating until I was diagnosed hypo 5 yrs ago. On Levo I was always tired, hungry, depressed and dragging myself around, with zero energy. When I changed to Armour I felt better within a week, energy levels slowly improved which in turn helped me to move more and function a lot better than I was on Levo. I said to the doctor Levo was like poison, they kept increasing the dose and I was getting worse. I was told T3 is ‘just something from a textbook and will make no difference!’ So I changed doctor and found one who would prescribe Armour and did understand the difficulties. I haven’t looked back since, still get days when I am tired but not every single day. When I was referred to the Endo in hospital not one of the Endo’s team had heard of NDT I had to explain what it was to them!! They had only heard of T4! Madness!”
“I was on Levo for over 40 years and as the years have passed, the secondary symptoms have grown. I have now changed to NDT, and I have been taking it for the last three weeks. I am feeling so much better already. I had to purchase it myself, but my GP is supporting my decision. It’s early days but I am sleeping through the night, for the first time in years, I have more energy and most noticeable, no brain fog. I also have less swelling in the hands and feet and have lost three pounds. I talked to the GP my who has arranged for full bloods to be drawn in a fortnight, hopefully that will give a true reading of what is happening, but I feel so much better already.”
Mary’s story (name changed to be kept anonymous):
“I’ve been on synthetic T4- only which was a disaster. Then went on a combo of synthetic T3 and T4, which was still a disaster; I needed such high amounts of meds and was still feeling hypothyroid. I tried NDT then with Naturethroid, Westhroid, Erfa and Armour, which were great but I had absorption issues so I needed to take my thyroid meds four to six times a day! I then went to Thyroid-S and wow, so much more stable and finally not hypo anymore.. But the ingredients list is awful, for me, my body doesn’t like those kind of ingredients. SoI guess I’ll have to switch to another NDT medication. With T4, it changed nothing and my blood results barely bulged (synthetic). With the combination, my blood results bulged a bit and my symptoms alleviated a bit, but with 300 T4 and 75 T3 a day I was still pretty far from being symptom free. Today, with about 200 T4 and 50 T3 I’m balanced – I know this is too a pretty big dosage, but I have conversion issues, adrenal insufficiency, severe gut issues impacting my absorption etc.”
“Switching to Armour saved my life… I had a total thyroidectomy almost 4 years ago and immediately, and I do mean immediately, first day of taking levo began having side effects; the worst of which was daily migraines.
After nearly 3 years I switched to a new endo, who tried upping my Synthroid which sent my to the hospital with the second worst migraine I’ve had in my life… that day she switched me to armour…. I immediately started making progress with my migraines…. I was hypo and significantly so for almost another year (I’m not an easy case apparently) but as my levels have normalized I have gone from daily to less than 10 migraines a month. Every day after taking synthroid I felt horrible… I had started taking it at night it was so bad, nausea, heartburn, heart palpitations, cold sweats, utter exhaustion… just felt horrible… I have none of those side effects with armour beyond slight heartburn if I have a migraine.. (normal with the migraines anyway but it makes it worse) and on those days I either take it with a small amount of food or take it at night… currently I have added thyrogold… as my body temp was around 96.1 degrees even though my labs were “normal” I called my GP and my Physiatrist and let them know what I was doing and the dosage I was adding- and they both said we trust you… treat as you see fit and monitor your vitals.. I have an appointment with my physiatrist at the end of the month.. to check all my levels… I feel good for the first time in a long time. I felt good on a higher dosage of armour but my endo refused to test RT3, and FT3 only TSH and FT4- and my FT4 was VERY low. 0.55. So I became a rebel after finding info on STTM and this site… I can honestly say I feel wonderful… hands down best desion I ever made was searching to find a doctor who was willing to switch me to NDT… and I did have to look… I actually called around and asked point blank do you prescribe armour or other natural thyroid replacements… only one Dr in my area did and that’s who I went too.”
“I am so very glad I changed to NDT in August 2016, as although I am not where I was at the beginning of the year when I was on 150 levo, I am a lot better than I was in June after the Dr reduced my levo in April down to 125. I then gained a load of hypo symptoms as well as the ones that I had accepted as my norm (e.g. lack of outer eyebrows as I know they have been missing for years as my dear Mum always used to tell me off for plucking them and she has been gone 6 years now). I am sleeping so much better now since changing to NDT. Although I am still very tired during the daytime and have not got the energy to do all I would like to do. The Dr I saw last month said that the tiredness was due to stress as I am my husband’s carer but I am convinced that it is because of my high ferritin levels, which are above the NHS range and have gone up a 100 units in the last month. I have also lost a stone in my first three months on NDT.”
“I started NDT in July 2016 and will never go back on levo. For a year and a half, my gp kept upping my dose when I said I felt no better, in fact I felt steadily worse. At every raise I felt a bit better then I would reach a plateau, then nosedive. Each time would be worse than the last. I made the decision to switch to NDT with a lot of support and advice from this site. I actually feel bloody great! I also have high cortisol issues and I’m working on those too. My endo is also supportive but will not prescribe, but hey ho. Onwards and upwards!”
“Changing to NDT has been a life changer for me. I realised how much so the other night when I was looking online for a going out dress to wear to my husbands work do. The last time I even considered going to something like this was years ago. I can remember it clearly, it was before there was internet shopping and I was looking through a catalogue. I couldn’t go to that one even then as I was too ill in the end.
Although I’m still overweight, I’m getting MY shape back, after years of being a bloated odd shape which didn’t change no matter what I ate or what I did. And yesterday I even had the energy to go out Christmas shopping- for fun! Don’t sound like much, but goodness it is to me! I really thought my life was over before the switch to NDT.”
Written by Rachel, The Invisible Hypothyroidism
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Rachel Hill is the highly ranked and award-winning thyroid patient advocate, writer, blogger, speaker and author behind The Invisible Hypothyroidism. Her thyroid advocacy work includes blogging, writing books, speaking on podcasts, being interviewed, writing for various websites and co-creating Thoughtful Thyroid courses. Rachel has worked with The National Academy of Hypothyroidism, BBC, The Mighty, Yahoo, MSN, ThyroidChange and more. She is well-recognised as a useful contributor to the thyroid community and is currently writing her second book You, Me and Hypothyroidism. She has received eight 2019 WEGO Health Award Nominations.