You're still under-medicated. Why don't you increase your NDT by 1/4 grain? It's far too soon to throw in the towel. You'll never get anywhere if you give up so easily. You didn't really give levo a fair chance, did you.
Can't remember if you've already given all the details about your nutrients but are they optimal?
I had high Thyroglobulin antibodies too and muscle problems have been one symptom I have had. I've ended up on NDT and one T3 tablet. No idea if it's the right thing as no blood tests for a while but I think this is the best I've felt, more normal although I'm still a stone heavier and I can't shift it. The muscle problems are mainly gone. The fog is better sometimes....I wonder if it varies if I remember to take all my supplements, Zinc particularly. I take all the supplements recommended on here and I think it does make a difference.
Do you read posts on this site? There are endocrinologists and endocrinologists and some would keep us all sick with their ignorance of thyroid problems, and have.
If I didn’t read posts on here how would I be able to comment as I have?
There are no identifiable qualified people replying yet there are a number of people telling others that they are wrongly medicated and telling them what to take instead in addition to interpreting blood results making a diagnosis etc.
People should only be giving advice from members and anyone wanting medical or medication input should always be directed to people suitably qualified. Admin should be enforcing that as they do on other healthunlocked pages.
As for your last point, if a person is not happy with their Endocrinologist then go see a different one.
anyone wanting medical or medication input should always be directed to people suitably qualified
There are no suitably qualified people where thyroid is concerned. If you read posts on here you should know about the general lack of education in all things thyroid, and how the so-called 'experts' really mess people up. How they mis-diagnose. And how they give the wrong treatments all the time. That's why people come on here in the first place.
I actually agree with you 100% - in an ideal world, people would get the proper advice from their doctors and be given the right treatment. Unlike many on this forum, I actually do receive the proper treatment from my own doctors and they are both thyroid experts. I am one of the very lucky ones. The majority of folks on this forum are not as lucky - and that’s why they ask for advice here.
Sadly, in the UK, it seems many doctors do not seem to understand the treatment of thyroid disease, are bound by improper NHS guidelines, and don’t even understand the meaning of rudimentary thyroid blood tests. I base this opinion on what forum members say, as I do not even live in the UK.
Many people on this forum are desperate and are in many cases, not properly treated or untreated for their disease. Many have resorted to self treatment to live their lives. As long as that situation continues, this forum and others like it will flourish.
I am saddened that forum members are so badly treated by their physicians and their health authorities , and not just in the UK - it happens in Canada where I live and in the US too. There are forum members from around the world who seek relief. And it seems many docs are not open to the value of diet, vitamins or supplements, which seem to work for many. The UK government and other governments too, apparently won’t even pay for the testing of many of these vitamins these according to forum members and they pay out of pocket for something that should be covered.
I am astonished and amazed every day by the depth of knowledge here. I have learned more in 5 months about my own disease than my doctors would ever have the time to tell me. I may not agree or follow advice from everyone, but there are genuine experts who have taught me a great deal. I have received reassurance and kindness from many - and knowledge - how to interpret my blood work - which many docs won’t or don’t have time to explain - and, a shared experience of our disease - what works for some and not others.
I am so grateful to have found this forum and to those members who took the time to respond when I was post TT and desperate to understand my symptoms at the time, even though my doctors are wonderful and help me a lot. Within about 10 minutes I had about 15 different responses - and I felt better - which is needed for healing.
Sorry for this long post, but I feel an explanation for why people take advice from this particular forum is important. And why, despite the fact that I don’t even live in the UK, that I participate here. So thank you, thyroid UK, and the wonderful members of this forum, (and yes, I am kind of teary now) , because, I am so appreciative of everything you do for me and for others.
And sending you good wishes today, yorkie! All the best to you.
Thank you for your considered response. Advice/opinion are needed and what I like I am sure many visit the site for. I am neither against that or wish to surpress it. We need to be our own advocates.
My comment was merely about people giv
• in reply to
Giving medical diagnosis and telling people what medicines to take.
Thanks for your kind remarks! And I agree with you - we do need to be our own advocates - and the more knowledge we have, the better we can advocate for ourselves. All the best to you and hope you have a good day today!
Yes I had Hypo and now Hyperthyroidism, probably Amiodarone induced. The Endocrinologist is presently arguing with the Haematologist who deals with my blood cancer as the two drugs they could give me are contra indicated with my Chaemo drug.
Is your Hyper diagnosis based on results - symptoms or both. Is your T3 over range ? Maybe you have Hashimotos when it is possible to swing between Hypo and Hyper. Were you ever treated for your Hypothyroidism ?
Am sure you could be right about the drug. It concerns me a little as you have not had anti-bodies tested that could point towards Hashimotos and you could be currently experiencing a Hyper swing. I have read several times here that members have been wrongly diagnosed and treated incorrectly with anti-thyroid meds.
If it was me I would want anti-bodies checked for both Graves and Hashimotos ... From reading here for almost 8 years it is well reported that auto-immunity is not an Endo's first thought. Is your Endo a thyroid specialist or a diabetes giy ?
Those are pretty typical Hashi's results. But, Hashi's is not true 'hyper'. It is just the dying cells depositing their stock of hormone into the blood during an immune system attack. It is not the thyroid over-producing.
If you were hypo, for whatever reason, it is highly unlikely that your thyroid is capable of over-producing hormone regardless of what drugs you take. As far as I know, Amiodarone can suppress TSH, and increase the production of T4 in euthyroid people. But, it also affects conversion of T4 to T3, so you wouldn't be likely to have such a high FT3 if it were Amiodarone-induced 'hyperthyroidism'. Were you euthyroid before you started taking Amiodarone?
Once they agree if I can take the medication and what dose the Endo has said they will do tests for antibodies after 6 weeks.
This is typical of what we object to in endo treatment: give the treatment first and do the tests to confirm diagnosis afterwards. That is the wrong way round. Plus, if they think they might be wrong in their diagnosis, they have a nasty habit of refusing to do the tests at all. We see it all the time on here.
I have just had information from my Haematologist that a couple of days before I saw the Endo in clinic a different Endo had written to my GP telling her to give me 5mg of Carbamazole and check my bloods in 2 weeks, then he will see me to discuss radio iodine treatment.
Therefore I still haven’t started the larger dose and tests in 6 weeks the other Endo said at Saturday’s appt. and will wait for the ‘experts’ decisions.
Well, personally, I would not start Carbi until the antibodies have been tested. It is the wrong treatment for Hashi's. And, once an endo gets you on Carbi, he is very reluctant to take you off it, even if you turn out not to have Grave's. And, if you have Hashi's, rather than Grave's, you do not want RAI, there's no need to put yourself through that. And, this is another thing that is wrong with the 'experts', their desire to whip out your thyroid without giving other treatments a chance first. It should be a last resort, not the first port of call. And, they only do it because they think it will make life easier for them, and to hell with the patient. And, even that might be ok, if they had any idea how to treat people after they've had there thyroids removed. But, they don't. They keep people under-medicated and sick for years and years. That's why forums like this exist.
Please do not knock this ‘discussion board ‘ People offer their time and vast experience to help others. Without this ‘discussion board ‘ many of us would not be in the health we are today. If left to the professionals , we would all remain sick. They are a lifeline for so many where the professionals continue to let us down!!
I am not knocking the discussion board at all. Maybe if someone follows the diagnosis and medical prescription of those that you are defending and becomes ill and sues then you may realise.
I would be tempted to stick with Levo and take your time-nothing works quickly, doses need to work up in your body for 6 weeks then retest. Levo makes it easier to get to know how your body reacts plus a lot don't convert well and you can only see this on Levo. In the mean time learn all you can about NDT. You get different results with NDT and they need to be read differently because of that. The only true reading would be FT3 so that is a must to get tested soyou need to know if that would be tested otherwise expensive private testing through the two recommended sites, Medichecks and Blue Horizon do have offers. Search on here for NDT and see what others found out and how they managed it. Levo works well for many but many don't post on here as they are well. Your 50 mcg you were given is a starting dose. It takes a full six weeks to get it fully into your body andctgen you needed to be retested and put up to 75 if bloods still low and then repeat the process for another 6 weeks and so on until you are on the correct dose for you. So you were a long way from the finished article when you stopped. The Endo should have explained this and either seen you again or instructed your GP to continue. It's a slow process and patience is often needed.
You have thyroid anti-bodies so your thyroid issues are due to auto-immunity and in this case the thyroid is simply the victim. This is called Hashimotos Thyroiditis. When you have one auto-immune condition you are more prone to more so it is important to address your health holistically rather than just expect thyroid medication to fix everything. There is a lot more at play here. Whilst you should support your body based on your Lab Results. You need to see this as a crutch whilst you get to the roots of your auto-immunity. Dr. Izabella Wentz is a brilliant resource on this, as she gives you a clear plan as to how to approach it and get to the root causes of your symptoms. She has a website and you can subscribe for free to her mailing list, plus she has 2 books which are a very worthwhile investment. Hope that helps. In the meantime, as suggested learn as much as you can about NDT and other Thyroid Meds. If you research this person you will get a lot of guidance there too as she is a Phamacist by origin but has suffered massively with all of this herself and put the Hashimotos into remission. It is possible but you need to dig and not expect the medication to fix everything.
Just read your earlier posts! Lots of advice but you don't seem to have taken any on board. Why? Nothing acts quickly and we start low to help our body to get used to things plus we may well miss our sweet spot and could actually start feeling worse.
I know and understand that you aren't feeling well but there are things that are better to follow to the letter. Ok further down the line when you are more experienced you will learn more about how your body reacts to situations and how to fine tune it better. Stick to the simple Levo which more have started on than anything else plus your doctor may be more familiar with that too.
Make a diary of how medication makes you feel once you have been taking it for the FULL six weeks. Also look at any dietary changes you may have made and remember you are doing that to find out what helps you the most.
Look on the Thyroid Uk site, they run this forum, as lots of good advice on there as well. Rene bee it cat take 3-6 months to get the right dose for you plus then you still need to recover. As I've said earlier, patience is needed. Ask your doctor to rest Vit D, B12, folate and ferritin as these help your thyroid to work better. If you need to supplement as these need to be optimal, not just in range, then oostcyour readings fircconnents. Out thyroid issue causes thes to be lower so we need to keep in top of those and if you need to supplement, many of us do, then it's for life though we may, once optimal, find a maintence dose to keep levels up.
Your aching muscles could be down to low Vit D and low B12. All your cells in your body need to be able to use our thyroid medication properly so that's why there can be a wide range of symptoms so another reason things take time.
In the subject if time many have sent you giidxasmdvise and that takes time so please remember that aswell thatcitsxtime and advice freely given so you should at least be trying out these suggestions but for a goidxtgree months to see what isxgelping you. It's not an easy journey but it's a rewarding one but you do need to make a start. Remember the 6 weekly blood tests and feel free to post any for comments. Remember the ranges as well as they differ from lab to lab and I shall look forward to seeing a post from you in 6-8 weeks with some results. Ok not the finished article but hopefully a good start. Take on board the info on the Thyroid U.K. Site and try and get into good positive habits trust me-it's worth it. Anything you want to ask along the way then please do but get started as soon as you are able and remember we can't rush things-that often can mean starting again!
You tested a week after starting 1/2 grain of NDT. That’s not going to tell you how you’re doing on it. NDT like all thyroid meds takes time to build up in your system.
FT4 was unlikely to rise because there’s only 19mcg of Levo in half a grain of NDT - you were taking 50mcg of Levo.
Getting thyroid meds right takes time. There’s no shortcutting the process because you’ll just end up feeling worse.
Add another half grain - start taking 1 grain a day. But don’t bother testing again for at least 6 weeks—it won’t tell you what the real situation is any sooner than that.
Stopping Levo after only 33 days and on only 50 mcg did not give you any time to get to an optimal dose and become euthyroid. Taking replacement thyroid hormones isn't like taking a painkiller for a headache where the effect is more or less immediate . For a start, it takes 6 weeks for Levo to reach a steady state whereby what you ingest daily, is in balance with what your body uses, and that's irrespective of achieving the correct optimal dose for you- 50 mcg is only the basic starter dose and you might need anything up to say, 200 mcg daily - some people need more. In general it is a marathon not a sprint. Regarding NDT, it definitely doesn't suit everyone, and as you've found, by taking in T3 within your tablets, the FT4 level may be lower or even very low in range, which is okay for some but not for others. But in any case, now is not the time to be thinking of swapping again.
Different brands of Levothyroxine affect people differently. Which brand did you start on?
50mcg Levothyroxine was only starter dose, people often feel worse initially. Any thyroid hormones are definitely not a quick fix
Levothyroxine - once find a brand that suits you, best to make sure to only get that one at each prescription. Many people find Levothyroxine brands are not interchangeable.Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients. Teva is the only brand that makes 75mcg tablet.
NDT - same applies. Lots of different makes. Different ones suit different people.
There's lots of trial and error experimenting
Always take Levo or NDT on empty stomach and then nothing apart from water for at least an hour after.
Many take Levothyroxine early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.
Other medication at least 2 hours away, some like, iron, calcium, vitamin D or magnesium at least four hours away
Bloods should be retested 6-8 weeks after each dose increase
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range
On NDT TSH will inevitably be much lower because of T3 in the NDT. This often causes upset with GP. FT4 is often low. Essential to test FT3 at each test, obviously this often has to be done privately
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine. Guidelines are that full replacement dose is approx 1.6mcg Levothyroxine per kilo of weight
You asked what I would advise you to do, not sure whether that was before or after my last comment but I still stand by my last comment and stick with Levo. I'm not saying that's your long term deal but I feel you need to understand more and recognise how your body is feeling and reacting so sticking to something relatively simple fits the bill.
I started out, must be around 40 years ago now on NDT. It was a NHS Prescription and my doctor took the same and had just got a diagnosis himself. I was on this for around 4 years but a strike in Canada meant I was without for 4 months and with a young family I asked to try Levo. I took that for a long time and felt good on it but menopause causes numerous issues and it felt that my body wasn't reacting well so back to research for a few years, asking questions etc and decided I wanted to go back to NDT and pretty good on that now. Doctors tend not to be as they listened to the rumours or what's been passed down and tend not to listen to you. But I put my case over and it was decided that I did understand and so because I ubderstand then no point in getting anything but bloods checked and I can adjust as I think I need. I'm happy with that but I have just been sent my next appointment date so someone must have said I must be seen but happy to do that now we understand each other more. But it's not easy to get that type of agreement so you need to know what is happening, how it makes you feel and what you should be looking into further so that's my reasoning to stick to something easy that the doctor should be familiar with and not something many aren't happy with through there own shortcomings. So my advice is still the same, stick with Levo, keep a check on vits and minerals as they can make a huge difference and listen to what your body is trying to tell you. Post your results and ranges as you progress and listen to advice. If you aren't happy with it ask why the poster is thinking that, it's often the only way we learn. Keep a diary of any changes along the way. It your journey and only you can tell how you feel but ask for help if you feel you need it and ask more questions as you go along. You may well be good in Levo once on a settled dose which is something you haven't experienced yet but you must give things a proper chance to work and remember to keep testing especially if you change something and patiently wait that 56 weeks before you test after any change. You will get there. One thing I did when I found this forum and hearing about things I'd not come across before was to read a post and think what my reply would be and then read the actual replies. Despite my years of experience I still had a lot to learn. My own issue is straight forward as I don't have antibodies but having to think about optimal vits etc was another learning curve and I now know how important that aspect is. Took me 5 months to get everything optimal but it's made a huge positive impact on my health but I didn't give in I kept going and yes I'm sure some things haven't worked aswell for me but that's what it's all about-getting to know your body and testing things out you come across and giving things time to work. I can understand your frustration of wanting to get well and I'm sure, in time you will succeed but there's not time limit on when it may happen and some take longer than others. You are a unique individual at the start of your journey so please be patient and don't throw away your chance to improve. Stick with Levo now asits easier plus it's the accepted treatment so not arguing over wanting to take something different. If results ultimately aren't good and no one can explain why then yes look at alternatives but learn all about them first, keep asking questions, read how others got on and any pitfalls so you can understand and see for yourself that something is wrong but also be aware we are all individuals and listen to your body.
I was on levo for 3 years had lots muscle aches plus other problems until I started to read up on hypothyroid (2012)and changed to a strict gluten free diet, my aches disappeared pretty quickly, also my lifelong migraines which was almost more important for me, As others on here have said its a long, long road.
Thank you elizab8
I have tried 4 weeks of gluten free diet
Without any improvement
How long did you take to notice improvement please?
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Have just started Levo. How long for symptoms to improve and hopefully disappear please?
Advice on results please for a new member
May test results 
Recent Test Results Advice Please 
Should I increase Levo?
