It’s been a while since I have posted! I wish I could say it’s because I have been doing really well on my thyroid journey. I have been very unwell, picking up infections and having allergic reactions to antibiotics that left me with swelling around my eye and now a really ‘nice’ scar on my upper eyelid.
I have found starting on Levothyroxine to be the worst experience and the treatment I have had by the NHS to be very lacking and dismissive of my condition.
I’m gaining more weight and getting more puffy and swollen by the day. I’m still exhausted most of the time. I’m having shoulder problems, aches and pains in my legs and worst of all levothyroxine has messed up my menstrual cycle and made them unbelievably painful.
So, I am researching and re-evaluating how I am going to move forward and I am thinking about self medicating and trying NDT.
I would really appreciate if anyone would kindly share their experience of starting NDT and by private message as per the rules of the group could you please tell me where I can purchase NDT.
Many thanks,
from extremely fed up and exhausted from it all.
**As requested, info about sources of NDT to be sent by PM only**
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MsWhistledown
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27th September T4 15.0 & TSH 3.67 T3 not tested. Please note the September test was taken in the afternoon with levothyroxine taken that morning because this was an emergency blood test due to unknown infection and fever at the time. They suspected meningitis. Thankfully turned out not to be that.
Unfortunately I do not have the ranges for the blood tests.
That sounds awful, did they ever increase your dose from 75mcg? It seemed to be settling well a few months ago but needed the next increase. NDT is another can of worms when you haven't actually been given enough T4 which is by far the easier route.
Have you done a full thyroid panel? Being under replaced is a torturous place ☹️
My dose has not been increased because my GP is looking at my TSH and saying it is in range. The usual response! Which I am getting so tired of.
When explained about my periods he said I could try coming off the levothyroxine!
He has made an appointment for a scan to check there is nothing else going on but I suspect it is due the the levothyroxine as it started not long after the increase from 25 to 50.
I need to do full thyroid panel and get a full iron panel which I am going to do privately over the Christmas holiday when I have some time off work.
I'd get your testing done as soon as possible and then put your results up for scrutiny, also make sure you get your prescriptions filled as soon as possible (this time of year is quite handy for requesting an early one 😏) then at least you will have the option of increasing yourself to see how that feels 🤗
Thank you that’s a good idea. I was tempted to try an increase myself. But sometimes I don’t know which way to turn with this condition. And yes the GP’s make this even more difficult than it already is. I feel like I’m going to have to start gearing up for battle before every flippin GP appointment 😂
It's not the levo doing all this too you, it's your under-treated hypothyroidism. And, to have a TSH of over 3 in the afternoon, you are very under-medicated.
And, yes, I understand that you didn't have all these problems before starting levo, but I explain all that in this post:
So, whilst NDT might be better for you, the hassle of trying to get it might not be - and it doesn't suit everybody. So, the logical next step should be to try and get them to give you enough levo to make you well. Which can be difficult, but not impossible.
Thank you greygoose, I just read your post and that’s exactly how I’m feeling. I’m close to tearing my hair out with how I’m feeling. Going with the consensus of responses here I will try and persevere with the Levo and go back into battle with the GP’s.
I agree with greygoose (and I am a long time user of NDT). Give Levo a proper trial, as it works well for the majority (75-80% of patients, when OPTIMALLY medicated. ) Obtaining a safe and reliable supply of NDT takes effort, costs money, and there's always uncertainty about availability - big pharma pressures to remove it from market globally. Also it freaks out NHS medics as they know nothing about it.
There's a lot of info on this site, tell your doctor you have been trying to learn about your illness with "information provided through Thyroid UK"- that means us on this forum 😉.
1 useful point to make is that if you are optimally medicated on Levo, your TSH should be 1.00 or under. Also that NHS guidelines suggest patients likely to stabilise well on a Levo dose based on bodyweight. I think it's 1.6mcg of Levo per kg of you. Get that calculator out and see what that number looks like. Unless you are tiny, it'll be more than 75mcg.
With low thyroid, it can be hard to advocate for yourself, but that's what you have to do. Your doctor is there to serve your needs. Make new appt and insist on a 'trial' of an increase in accordance with the information from Thyroid UK about NHS / NICE guidelines.
Get FULL thyroid and vitamin testing done EARLY morning as next step
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Testing options and includes money off codes for private testing
I was diagnosed with hypothyroidism post partum in 2013. Levo left me exhausted, achy, unable to lose weight or excercise properly. Prior to diagnosis I was a professional dancer and hypothyroidism ended my career.
Fed up with being unable to move properly, have no energy levels or do anything I took matters into my own hands and started NDT in 2015 and I have never looked back. Weight loss is still hard but I have the energy to move, excercise is something I can do as my muscles don't seize anymore, and I have the energy to function like the average human being.
For me, it was a lifesaver. There are posts on this forum about where to source NDT and how to go about this if you are NHS patient - because my experience with GPs and NHS was frustrating to say the least.
I had one endo tell me that levothyroxine alone was the same hormone (singular) that makes your thyroid function. I later found out he held huge shares in Glaxosmith & Kline.
Levo does work for lots of people but for others, like me, it does not. Additionally, I also stick to thyroid friendly dietary restrictions as they help best NDT absorption (gluten free, soy free, aspartame free, cruciferous vegetable free - low GI).
thank you for sharing your experience. Really glad to hear you are feeling so much better. I think that’s what I find so difficult, not having any control over my health and leaving it in the hands of doctors who are so blasé about the condition and the symptoms I am suffering.
It certainly helps thank you. It means I have options if I do not get on with levo in the long run. And there seems to be light at the end of the tunnel….😊
I think the advice you've been given so far is good - because you want to consider NDT only after you've tried levo at optimal levels and you've exhausted all the other options; there is good reason not to dive straight into NDT and there's a plethora of literature on the internet as to how it can effect you adversely, if there are other factors at play. As an example; I am predisposed to get osteoporosis so I have to take additional calcium supplements during the day, as NDT can decrease bone density. So keep going, you have options and take it one step at a time. Be kind to yourself x
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