Dispare and anger about trying to get DNT

I was diagnosed with hypothyroidism nearly 7 years ago after a long battle with my GP. Who bascically thought my issues (weight tiredness and others) were down to me eating to much and not excercising enough! I think he just thought I was looking for excuses and an easy way out.

I was sent to an endochronologist (who was also somewhat patronising) and eventually ended up on 100mcg levothyroxine.

Every year I had my blood test I felt sure it would need to be increased as I wasn't any better but I'm still on the same dose.

I recently started exploring the internet as I was curious if others were suffering the same. I then braved challenging my gp and although she assured me she believed me she didn't know enough about DNT to prescribe it and has referred me to an enchronologist. That's where we are now but I hold out very little hope of any progress and what really scares me is what do I do next. I have gained approx 5 stone and it shows no signs of stopping (and yes I've dieted excercised joined clubs and gyms) this of course is making me depressed and it's getting somewhat scary.

I would love to hear from anyone who can offer me some hope as in "light at the end of this very long tunnel"

25 Replies

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  • Welcome to the forum, HapyJackie.

    If you post your recent thyroid results and ranges (the figures in brackets after results) we'll advise whether you are optimally medicated on 100mcg. If you have results and ranges for ferritin, vitamin D, B12 and folate post them too. If you are under medicated that will be why you are gaining weight.

    NDT isn't licensed for UK use so it is rarely prescribed on the NHS. Most members using NDT buy on the internet and self medicate.

  • Don't have the details but was told by the gp that only the TSH is measured all I have ever been told is "no action needed" I am having my annual test next week so will make sure I ask for the figure when I get the result. Thanks

  • HapyJackie,

    TSH only doesn't tell us much. If you can't get your GP to test FT4 too I would order a private thyroid test which includes TSH, FT4, FT3, thyroid antibodies, ferritin, vitamin D, B12 and folate via thyroiduk.org.uk/tuk/testin...

  • That is what I was told for years as well (in Belgium): that the TSH is all that is needed and, if it's normal (=anywhere in range for most doctors), you are fine and whatever problems remain are not due to your thyroid. I know what you mean about condescending doctors: right before I was diagnosed with Hasimoto's disease (autoimmune hypothyroidism), and complaining about weight gain and how it was impossible to lose weight no matter what, I was told by my GP: "A little less ice-cream and some more exercise would probably do the trick"...

    Is there any way you could order and afford private labs in the UK? That way, at least, you could have your free T4 and free T3 measured (the latter being the most important hormone as it's the truly active one). You should also have thyroid antibodies and anti-thyroglobuline measured, to decide if your hypothyroidism is autoimmune in nature.

  • Thank you Anna. Do I take it with your diagnosis (autoimmune hypothyroidism) you have been able to get the treatment you need and are now on the road to getting sorted?

    I will certainly look into getting a private blood test haven't much spare cash but could well be money well spent. Thanks again

  • Yes and no. The original diagnosis in itself did not make a difference one way or the other as far as treatment was concerned (the GP and the endocrinologist I was seeing back then only prescribed T4). But my diagnosis at least told me it's a chronic condition requiring life-long treatment. It can mean other things as well, as I have learned along the way.

    What I mean is that people with Hashimoto's often need a really low TSH in order to feel truly well and calm antibody activity down. That often means a TSH around 1 or lower, sometimes even suppressed.

    If on T4 only drugs, it's often necessary to keep your FT4 levels in the upper part of range, or even at the very top of range, in order to make sure there is enough raw material to convert to T3.

    It seems people suffering from Hasimoto's are often poor converters...I certainly was. No matter how much T4 I was taking (I ended up on 200 mcg daily), my FT3 levels remained at bottom of range, and I was suffering from a wide range of symptoms of an under active thyroid such as weight gain, feeling cold, dry and flaky skin, brittle nails, hair loss and fluid retention (my puffy face would often remind me of a balloon). If you cannot convert enough T4 to T3, there is no use in taking more T4; what you need is direct T3, either in the form of synthetic T3 or NDT.

    It's often said that people with Hashimoto's should not take NDT as it can trigger their immune system to attack and destroy the NDT (the way it has been attacking and destroying the thyroid gland). However, I recently read a newsletter by a US doctor treating patients with NDT, and she said that after prescribing NDT to thousands of patients over the years, she has only seen this happen in about four patients...so it does not seem to be a very common problem.

    Five years ago, I went to see a Hertoghe doctor in Belgium (this refers to the hormone doctor Dr. Thierry Hertoghe who has his own medical school in Brussels where he trains doctors who then end up working in his practice or go into private practice). The so called Hertoghe doctors prescribe NDT (available in certain Belgian pharmacies under brand names Armour and Erfa). However, since both these brands are incredibly expensive, and not working optimally anymore (one was reformulated to include more cellulose, the other one ended up problematic after production was moved from one country to another), I now order NDT myself from Thailand, for a fraction of what prescription NDT would cost me in Belgium. In my experience, Thai NDT works as well as any prescription brand of NDT.

    Having said that, NDT alone has not been enough for my recovery (which has been slow and gradual). I was on adrenal support for almost five years (prescription drug Medrol) which I only recently managed to wean off, and I have also been on estrogen and progesterone. If you've been hypothyroid for a long time, it's reasonable to assume your adrenal and sex hormones are also out of whack, so they would all need to be balanced. Unfortunately, doctors who know anything about this are few and far between...especially in Europe:-(

  • Pleased you are at least on the right road even tho it has been a long road. I feel I too may be at the start of a long journey and wish I hadn't "wasted" the last 7 years. It seems so wrong that it has to be such a battle! How did you find your expert? Is there a list? Thanks 👍

  • There used to be a list of so called Barnes doctors (now also called Hertoghe doctors) in Belgium; not sure it's still around...but I remember it only covered doctors in Belgium and possibly France. I am not sure the equivalent of Hertoghe doctors exist in the UK; I hope UK members will be able to tell you.

  • PS. I found the list, but it's completely outdated...it only mentions Armour, not Erfa, and they have both been around since 2009. So this list must be at least eight years old, probably even older. If you'd like, I could send you a link by PM (it's only available in French).

  • No don't worry I'll keep looking. You never know I might strike lucky when I finally get my appointment with the enchrinologist!

    Thanks

  • Thank you for this info anna69. Im sorry to butt in the post but I too have struggled with massive weight gain and many symptoms and all the doctors Ive seen can't see passed the weight. Even the Rheumatologist who has just discharged me said I should have my jaw wired! Ive seen several dieticians who say I eat healthily. I do have mobility issues due to osteoarthritis in both knees and feet and ruptured achilles and fibromyalgia fatigue so exercise is difficult but I do try. I used my birthday money in September to pay for a blood test and following results of this bought Thyroid S and nutrients (my vit D3 and B12 were both low) . I started on upping nutrients as people on here had advised and then gradual NDT. I am up to 2 tabs per day and although I still have many symptoms I can see the difference in my puffy face not being so puffy. I think it will take me a long time to feel anything like normal again because I believe I have been hypothyroid for a very long time and sex hormones are like you say probably been struggling just as long (probably 30+ years). I am so grateful for the people on here being generous with their experiences and time because without them there would be no hope of ever being well again. Hugs Joolz.x

  • Your blood test should be at the very earliest possible, fasting (you can drink water) and allow 24 hours gap between your last dose of levo and the test and take afterwards.

    The TSH is highest early a.m. and drops throughout the day. So I'd change your appointment.

    You want a Full thyroid function test, TSH, T4, T3, Free T3, Free T4 and thyroid antibodies.

    Labs may not do them all if TSH is in range but, as Clutter Clutter advised we have recommended labs.

    From now on always get a print-out of your results from the surgery. Some ask for a nominal sum for paper/ink.

  • Sorry do you mean I should have the test first thing? It's arranged for 8.40am and I will as you suggest leave the 24hour gap. Thanks

  • 8.40am is fine.

  • perfect timing.

  • Don't forget to fast over-night! Have your breakfast after the blood draw. :)

  • I've only recent joined this group. But these people on here are fab I've been looking things up myself since middle of last year but found things very confusing. But since chatting on here I've gained lots of knowledge in the space of a week. I to suffer with under active thyroid have done for 15yrs. Been on levothyroxine ever since. Was always ok up until just over a year ago. My doctors wouldn't listen to me. But I told my doctor I'm going Ndt with or without them supporting me. I'm still going to see the endo and I shall tell them the same. I've gained 2 stone since Christmas so I know exactly how your feeling. But listen to what people tell you on here :-) I'm sure people will advise you on NDT and message you with links . Good luck

  • My thoughts exactly. Will have my blood test and then as long as I don't have to wait a silly length of time to see the endo (no appointments available at the moment so have to wait for them to contact me!) I will too say that's what I want and I'll also ask for a more detailed blood test but to be honest I don't hold out much hope and I too feel I may have to explore "doing it myself"

  • I'm exactly the same with the weight gain . Since this started 5 years ago I've gained 7/8 stone . Seen endo who says it's not thyroid he thinks ids sleep apnea ? I have others symptoms such as fatigue , muscle spasms , Carpul tunnel both hands, pains in legs and feet , depression , low libido, . I've had night sweats for the last 5 years endo says that's over active symptom! !

  • So you are not on any thyroid meds? I feel unless we are textbook cases we just get pushed to one side because we are too much like hard work! Just can't understand why! Surely the challenge should be something they should "rise" too!

  • I'm on Levo I take 150 mg a day but I'm still gaining weight and getting more symptoms. I cry when I look at photos of me 5 years ago I like slim , fit , happy and healthy

  • I feel for you. It is good to know there are people out there suffering the same. I know what you mean about pictures too. I feel I need a tshirt that says "I'm not a lazy pig" as you sense wherever you go people look at you as if you are!

    I have always suffered with my weight but lost 6 stone 20years ago then after having my 2nd child it started to creep on. Maybe that was when it started, who knows.

    Hope you find a workable answer. Keep in touch.

  • I moved area last year because I couldn't stand the way people look at me ! You can see the shock in there faces . I've always been a gym person , not now . One guy said to me *what have you done ! Get it off it doesn't suit you *

    I was doing length swim at the time

  • I know what you mean Hapyjackie . After my first child I lost the baby weight but having my youngest son I was sick all through pregnancy and couldn't eat without throwing up but put on 6 stone. That was 30 years ago and thinking back that is when I felt changes in my body. I have been unable to lose weight despite so many different diets etc and each try has increased my weight further. Ive had carpel tunnel surgery, hysterectomy, migraines, food allergies,tinnitus and now osteoarthritis and fibromyalgia but despite my pleas to health professionals to help my thyroid they brush aside my thyroid concerns and can't see past my weight gain. Not only have I had comments from strangers in the streets or shops but Ive also had abusive comments from "professionals" like "need your jaw wired", "too fat to examine", "if you cut out the mars bars you'd lose weight" (Ive not eaten chocolate since I was 12 because it gives me migraines). They know nothing. Dieticians have told me I eat healthily in fact some have told me I dont eat enough calories in a day. I used to cycle, do aquafit and walk a lot but never lost weight and since damaging my knees 7 years ago even more weight and less understanding from doctors.

    I dont go out now unless I really have to because I can't stand the looks and I just want to hide away.

  • I agree that the challenge of finding out what helps us should be what they signed up for but their "first do no harm" seems to be ignored now.

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