I do wish everyone, including the Admins on TUK , whether long term or newly diagnosed Thyroid patients, would look at Drugs.com own website under the heading of Levothyroxine.
There is so much information on there about what other medications (drugs) it counteracts with - not to mention the other health conditions people may also have, where Levothyroxine should NOT be taken, or dosages adjusted accordingly by the prescribing doctors. It also says that OTC multivitamins and supplements , if taken simultaneously, can reduce the effectiveness of Levothyroxine dosage we are on individually.
This is so why I hate others on here saying take this take that and I can count on fingers of one hand the number of people who write on their replies that they are NOT medically qualified to advise anyone what to take or do!
On its own merits, a deficiency or surplus of Thyroxine in the body -is not responsible for the now huge list of symptoms listed there. Most of them are down to other health problems including the whole endocrine system, or other medications and supplements taken. Many without their own doctors knowledge!
It's No wonder so many people with a Thyroid condition get worse and sadly not better so they come back on here looking for the answers instead of doing their own research into the medically qualified and respected website information.
I despair - and I unequivocally state I am NOT medically qualified, but I can read and write and am intelligent enough to make sense of the information on the research websites I use.
I understand what you mean, but personally I do like to hear what people have used and found helpful. There are so many products out there it's good to hear peoples personal views from experience. thanks for the link, will take a look. also I have googled and read allsorts but I have learned far more on here
That's fine if you have the ALL the same health conditions, are the same age, weight as them and are on the same dosages. That's what I am saying what applies to one won't apply exactly to e next one. That's why you need to do your own research, not rely on others to tell you what to take or not!
You seem to be suggesting the the forum should shut up shop and everyone should go home, Sambs.
There is no way that everyone will give so many personal details as you suggest on a public forum. Many people are cagey about identifying details. Nobody would want to give a full medical history because many things are too personal to discuss here.
If directing people to useful links that we have found, or telling people about our own experiences is not a good idea, then what do you suggest we do? Give up?
No not all Human bean, I'm just suggesting that people do look for themselves, especially if they don't want to say there are other health issues involved - because too many of the other forum members suggest other supplements or different meds to take without having any idea of potential health implications if those meds do NOT work well together, thereby reducing the effectiveness of the Thyroxine or what ever is taken. I seriously hope that the admins here would look look at them, and take account of the medical information there so that they are really able to progress TUK into being a superb health forum, not just a mishmash of such diverse advice.
I also do not intend defending my comments to everyone who gets up in arms about them. I'd sooner seriously suggest people look at all avenues for themselves, than tell a complete stranger what they should or should not supplement with.,there is a lot of good help given with understanding blood test results and that's when the individual themselves can take matters into their own hands. I shall of course respond to the Admins out of courtesy.
I myself am new to t3 not t4.. I've found it a great help on here and am compiling the list for consultant.. I wouldn't think many would just alter meds or not think before acting.. I myself have asked about how you can determine if a foreign suggested online t3 supplier is genuine.. So although i get your point and worry, there's every chance I would have got the same info and suppliers info in other places... So it's a chance I'll have to take.. It's nice to run things by others who have or are feeling the same..
Scorpio no, Drugs.com is not a website that you buy meds from - it is an HonCode scientific website that explains the effects of individual PRESCRIBED medications - and what other medications taken for other health conditions MAY also, counteract the effects of T4 release into the body I.e. Levothyroxine.
I think it's made quite clear that they are only suggestions. I, myself listen to others but always come to my own conclusions. If I relied on my GP I'd still be on 50mcg levo, be very ill and have no clue that I need Iron. I only feel like I have got hope from coming here. I don't even trust half of the sites I don't know who creates them. Also being shattered and brain fogged it's not easy to go searching. The majority of the suggestions given on here seem to align with each other anyway. I do understand people being concerned but I personally am very grateful for all advice and suggestions so far. So Thankyou guys, right I'm going for my Iron, bye
Well I'm afraid to say I don't know very much. I know that being low on Iron is about diet but no I didn't know it was to with endocrine system. The point is though that my test results going back quite a few years show that my ferritin levels have been very low for some time. However my GP did not think this important enough to tell me, so therefore I just assumed all was well in the Iron department. If I didn't come on here I would not have been aware to check my own records and look for other deficiencies which very tired people are used to looking for. Like I say I do completely know where you are coming from, but I am just putting forward my own opinion that I would be struggling a great deal more if I didn't stumble on this site. The suggestions and advice has been invaluable, that's all I'm saying. I just thought Doctors did their job to be honest. I'm very naïve. if the medics could be trusted people wouldn't have to come on here and do research which they shouldn't really have to be doing half the time, and basically get it in laymans terms, which is what I need when shattered and brain foggy
I was just as naive myself 15 months ago Pastille, i e been hypo since 2000, it was a friend, also hypo, same doctor I use, who kept feeling tired all the time, saying the doctor didn't understand her that made me look up Thyroid conditions because we were both reacting so differently for the same conditions, although we both have have had various stressful periods in our lives, both had foot operations to correct bone deformity. She didn't want to know when I told her about TUK! But I've badgered the doctor and got a lot more done than her. I saw her briefly from a distance for first time in months this week, she doesn't look any different, but may have lost a 3/4 lbs in weight.
Aw bless her, I am like her. When I was first diagnosed in 2014 the doctor put me on levo and told me to come back in 12 months. I knew I wasn't right, but when I asked him he said "no your not due a blood test for another year" and I just said okay. I was so apathetic I didn't even have the energy to disagree with him. I was literally lost in a brain fog it was awful. It was only when I started googling to help myself that I accidently ended up on this site. I was so relieved at what I read. I knew then that I had the right to another blood test etc. It was my light at the end of a dark tunnel tbh. I do ask a lot and sometimes I really feel like I'm mithering but I just want to be well. I have 2 very active grandchildren who need me
Very good post Sambs, I have always wondered how many people are actually making themselves more ill by taking supplements or alternative meds without knowing that they need them or if they are right for them. The advice to raise levels of everything to the highest possible is also a worry, we all have our own set point within a range so shouldn't be pushing past it.
We see so many newly diagnosed/desperate people join who are swept along by all the advice and believe that what is advised is going to cure them, ok, for some it might work but others not so.
Research takes no longer than typing posts and replies and might just be more beneficial/safer than taking someone's word for it.
.If everyone just went to drugs com and did their own interpretation, there would be no need for a forum..... Once the forums were abandoned, people would rely on the info from places like the nhs and drugs.com who tow the party line and offer none of the considered views and experience found on the forums.
So, after several years of following official recommendations, a significant minority would not be getting better, and they would group together and form a forum to exchange ideas.
Agreed we all need our own regime, but the group discussion on forums like this one, gives us the confidence to go ahead and work it out. Individually going to an info website like drugs com gives us no group support. I understand your frustration at people who want spoonfeeding , but when frightened, confused, tired and convinced you must be going mad, sometimes you just want others to tell you everything.
Galathea nobody NEEDS to "interpret"'anything on drugs.com - the Universally used HonCode and Trusted Labels confirm they are approved and can be trusted on the information they print, based on medical research. If it says DO,NOT take such and such a drug if you have such and such condition for which you are already taking the correct drug, the. Don't take the drug you are looking up before speaking to your doctor. . What is there is to interpret in we all know that General Practitioners are just that General ones! If they spent all their days looking up every drug and every condition that every patient they see has - they would run out of surgery hours then NO patients would be seen.
If people cannot or do not understand plain English on these HonCode & Trusted websites, that is when they should ask someone who will understand what it says!
TUK is a "social forum" on Health Unlocked, and also a Charity which I have willingly given a donation to - so I put my money where my mouth is.,I don't post on here to rubbish people only to give some honest and sensible advice. I have answered everyone adequately also!
"Galathea nobody NEEDS to "interpret"'anything on drugs.com - the Universally used HonCode and Trusted Labels confirm they are approved and can be trusted on the information they print, based on medical research. "
Sambs, the whole point, which seems to have eluded you, is that the medical research on thyroid is incomplete and some of it is wrong. One example is that in tests 49% of patients prefer ndt, although blood testing shows similar results for ndt and the synthetics.
The medical conclusion is that both medications give the same results. However, for one medication to be preferred over another, just shows that the correct things are not being evaluated.
Absolutely we have to interpret what we are told, and that includes stuff on here as well as on Drugs com. If you are well, why do you bother with a forum?
All I can say to you , is thank god for thyroid uk!! They have all helped me immensely and without admin and every other member that cares on this forum, I would still be laid in bed getting fatter and fatter left on a starting dose of levothyroxine and told "take this and you will be fine " .Searching out the truth about my illness brought me to this forum . If you don't agree with it then no one asks you to stay but please don't rubbish us or our forum
Thanks for the link Sambs but I think it is understood that we can only suggest what has helped us as individuals. Members must know there is no medical professionals giving advice. It is mainly suggestions.
If we are unwell and the doctors/endocrinologists aren't pulling out all the stops, what are we to do. I learned through Thyroiduk.org.uk info which helped me enormously.
Thing is Shaws people do think Admin are medical professionals, there have been quite a few posts recently where the poster has asked for medical/dose advice specifically from someone in Admin, its not just on this forum but across others on HU.
Also despite all the disclaimers and so on some members are still giving specific advice of meds and particularly doses, this can't be right.
To expand on your last sentence about members giving specific advice on meds and doses.... this sharing is cautionary from folks who use specific meds/supplements and are knowledgeable about dosing etc. For instance, selenium is very protective of the thyroid and may even be helpful in the T 4 - T 3 conversion and lowering anti-body numbers. But one should not take doses exceeding 400 mcgs per day and preferably be taking 200 mcgs per day. The same cautions apply to some other supplements like natural, low dose lithium, chromium, natural progesterone for instance. Are you saying that members, experienced in supplementing these things, should refrain from sharing this information on dosages, effects, etc?
It is well accepted that ingesting Vit C when eating iron-rich foods or iron supplements can facilitate and increase iron absorption. Should one refrain from mentioning that when discussing iron and the fact that some folks have a hard time increasing their iron? Should we also be quiet about the fact that, as harmless as Vit C supplementation is, there is such a thing as bowel tolerance and if one exceeds one's bowel tolerance, they will be spending an inordinate amount of time in the bathroom?
What is the point of having a group like this if we are constrained in sharing experiences? I think most responsible members always encourage others to do their own homework/research because others can have conditions that may modify their ability to utilize a particular supplement.
This is an open forum, people can post/say what they want within reason. If they don't want help/advice they are not forced to join nor take advice if they've asked.
If someone has asked and wants to switch to another thyroid hormone - do we leave them wondering or the suggestion might be - what they take at present. i.e. if 100mcg of levo and they want to switch to NDT or T3, it's best they know the equivalent is equivalent to 1 gr of NDT, or 25mcg of T3. If members don't want to know they shouldn't ask and as stated in many others' responses refer to your GP and as we all know very well, sometimes the GP is the last person to know the answer.
If they have never been prescribed, then what do you do - let the person go ahead and purchase whatever and not even advise the lowest dose we usually start with!
If they haven't been prescribed Shaws anx not post blood test resu,ts as some don't, HOW do they know they DO have a Thyroid problem? Based on symptoms that equally apply to many other conditions, or because they come on here, buy stuff online and mix it with other meds they are taking for other conditions they know have. It's the only reason I suggested people just check things out for themselves, before deciding to take what somebody else takes, then finds themselves with other possibly worse symptoms saying they are worse than before and their doctor won't listen to them. I Just suggested that people check the drug they want to take is safe to do so in light of their own health.
I'm not rubbishing Levo, NDT or any other Thyroid Med at all, just pointing out we are all different and I'm also putting another perspective on Thyroidism and yes we definitely need much more and better research than is currently being done - I'd hate to see these same types of discussions going on 10 years or more from now! Which is why I've looked into it so much! I think you will agree I've not told anyone NOT to or TO take any meds, I've suggested they check why their dosages may not be working for them. One person admitted to not even knowing about the endocrine system - and how many others are not aware of how their organs and glands work or why
If just one person, one day, comes on TUK writes
" wow I'm glad I checked out sambs' suggestion, I shouldn't be taking these two meds together, That might explain why I feel worse and not better, I'll discuss it with my Doctor" and - then their "symptoms and problems" do improve, then it will have been worth it. Nowever, I'm sorry if you have been kept over occupied with this post when you could have been answering others. Have a good Easter, x
It's all very well suggesting people should check things for themselves - I'm all for that - but sick, brain-fogged people often have difficulty knowing where to start, or understanding what they find. They need a vitual hand to hold, reassurance, even perhaps something to put a smile on their faces. I seem to remember you did when you first joined...
It's often stated on here that none of us are medically trained, and we're only suggesting what may help. And, it is said by so many, many people, over and over and over again, that we are all different and we need to find what works for us.
It's very nice of you to post a link to a site that might help - that's what lots of us try to do. But do you really need to slap the faces of people that have tried to help you at the same time? I find your attitude very disappointing.
hi GG, most of my attitude on this post has been in response to many of the people who have been equally slapping me in the face for suggesting a website where they could see if any of their continued symptoms were being caused by drug contra indications. I cannot be held responsible if they did not understand that.
So no I'm not slapping you, admins or TUK in the face! I'm v aware of and grateful for the help and support I've had on some occasions on TUK. I'm equally disappointed to see that you think and wrote your reply in that vein. And no I didn't expect the animosity from many of the responses either, given I'm not telling any body what to take or not!
The advice given on this forum has benefited my daughter hugely and I am extremely grateful. I implemented a regime of supplements based on the advice here combined with my own research, along with dietary interventions suggested here and she has come on in leaps and bounds. She was going downhill for a year, but since I found this group, her health is improving daily. We have just started seeing a private doc and he was very impressed with the knowledge I acquired here! Obviously it is up to the individual to do their own research alongside the advice of others.
Sorry Shaws, just lost some of my reply to you. given some suggestions and replies on many posts over the last several months, I'm not convinced all members do know that TUK has no medical professionals on it, other than the very few who say they are not.
If we are unwell and the doctors/endocrinologists aren't pulling out all the stops, what are we to do" - my suggestions are in my post! But I cannot agree that every single symptom listed by those who post can only ever by down to the Thyroid alone and this point is not being made by TUK. I've stopped taking other prescribed meds as you know. I have supplemented only with the Arkopharma, my TSH readings have come way back down since I experimented with those, my own doctor has also altered my Levo again. He still keeps me on the monthly D3. My blood counts have also improved since I started on thebArko. This is why all the symptoms that don't improve with newer diagnosed patients concerns me. It's only research plus private testing to to rule in/out a recurrence of my other (latent) autoimmune condition,,that has helped me thus far. I am still only on Levothyroxine for my Hashimotos, I have no Thyroid physical symptoms except hair thinning, only blood test results.
Liked for the fact that drugs.com is a good site to check for drug interactions, I have bookmarked it. Of course, being a US site there are a lot of unfamiliar brand names so it's wise to check for the actual drug name. Information about timing of when to take certain supplements so as not to interfere with thyroid meds too which is useful.
One of the reasons I'd just like people to check things out for themselves instead of adding what someone else takes for their own health! Same really for Vitamins and Minerals, it's so easy to look those up and see if getting the right amount from the food we eat. There are some cautionary notes about self supplementing while taking a thyroid Med, because of the potential effects there as well!
I have to say a couple of posts have worried me recently. One from a brand new member, first post, asking where to get T3, nothing in profile, no mention of test results, members knew nothing about the person yet people were happy to give details of where to get it.
Another one about supplementing with iodine because (basically) they'd heard it can help, yet no testing done to see if it they were deficient. I liken iodine to iron in that if you don't need it then supplementing with it can do more harm than good.
I think this forum is wonderful for support and advice and many members (myself included) have benefitted greatly and learned a lot, but sometimes a little caution is needed, research needs to be done (or linked to) and maybe more information given by the person asking for suggestions before some suggestions are made.
that may have been me! I'm a little confused about the t3 just given to me and ndt and other things were mentioned, I don't know anything about.. But, ill pick it up asking probably silly questions that may seem obvious etc.. But I am grateful for everyone's support and will check out anything.. I haven't taken any bits with the new t3 would be interested in others thoughts, but again will run them by gp or to consultant etc.. I'm not that dim.. If nothing else this place gives me a new t3 er and an exhausted t4er a place to feel among fellow sufferers..
Scorpiojo - no, as far as I know it wasn't you unless you've rejoined with another user name, I was referring to a post by another member who had never taken any thyroid meds because she hasn't been diagnosed.
I'm afraid not, Sambs, t, what you eat is not necessarily what you absorb. Especially given the overlap between hypo and gut conditions, that's vital to remember.
Aspmama, I think your last reply was probably more for pastille than me. I'd said much earlier that supplementing only, does not necessarily provide what is now called the RDA and that is why one should also look to the food they buy. Let's face it if we all lived on and nothing else then our endocrine systems would be well and truly up the creek
The Drugs.com website is owned and operated by the Drugsite Trust. The Drugsite Trust is a privately held Trust administered by two New Zealand Pharmacists. The Drugs.com website is intended for a U.S. audience and is hosted at a data center located in Dallas, TX, USA.
Contact address:
Drugsite Trust
25 Apollo Drive, Suite A
North Shore
Auckland 0632
New Zealand
Phone: +649 476 8500 (after 3.00 pm EST, due to time difference)
Drugs.com is NOT affiliated with any pharmaceutical companies. The only funding we receive from pharmaceutical companies is by way of advertisements that appear on the Drugs.com website.
People do find it confusing when the brands, the dosages, etc. are not familiar.
Furthermore, it has its own levothyroxine forum, with fascinating threads like this one:
I am taking Levothyroxine to loose weight I do not have a thyroid problem what are some of the health risk or problems i can encounter using this drug to loose weight?
Well done Helvella, finding all that info - perhaps it's my Apple Safari search engine that takes me there , still worth knowing though what medications can counteract each other, providing we are talking same meds and pharma of course - and I saw today it said Levothyroxine should NOT be taken to lose weight!
At least on Health Unlocked and the Diifferent Forums health issues are being discussed. One of them, it might be RA - Rheumatoid Arthritis is an American Society - that may have attracted members to TUK also.
"to empower patients with the knowledge to better manage their own healthcare and to improve consumer safety by assisting in the reduction of medication errors."
Drugs.com is the largest, most widely visited, independent medicine information website available on the Internet. Our aim is to be the Internet’s most trusted resource for drug and related health information. We will achieve this aim by presenting independent, objective, comprehensive and up-to-date information in a clear and concise format for both consumers and healthcare professionals.
Drugs.com is NOT an online pharmacy
Drugs.com is NOT an online pharmacy and does not condone the sale of prescription medicines over the Internet without a prescription. Drugs.com simply provides a free drug-information service to help you better understand how medicines work: their uses, side effects and potential to interact with other medicines. For information on purchasing prescription medicines online please visit the FDA’s Buying Prescription Medicine Online: A Consumer Safety Guide." .................
That is the Mission Statement put out on the link to drugs.com posted by Helvella
My own Mission Statment is that I aim to help point people in the right direction when all else fails to resolve symptoms - no matter what health problems you have and if are taking too many meds! --- SAMBS.
Not being medically qualified, I have nothing to gain financially or in any other way, except to know somebody discovered info for themselves they may not have otherwise known!
There are many worrying posts, one poster recently took all supplements advice literally and bought the lot with no idea if they were needed or not, most likely not.
Well, there are a lot of people who, apparently, can't read, because we're always saying that to find our what suppléments you need, you have to get tested. Can't say it clearer than that, can you? So, do you suggest that no advice is given so that those who can't read properly Don't make mistakes? What happened to individual responsability?
ps A lot of people don't understand medical information & dietary implications, hence asking for information on here. I do, yet I've not long thrown out over £50 worth of "healthy" but goitrogenic foodstuffs that interfere with thyroid function & absorption, because I was ignorant. What's good for one person isn't necessarily so for the next, yet people believe what they read on packets, & semi-pseudo science articles about what will make them feel better, & clutch at straws.
Well, excuse me for saying this, but you still Don't know much about goitrogens.
I have said, over and over again, that not all goitrogens are going to affect all hypos. And warnings about goitrogens are more for people not on thyroid hormone replacement, than for those that are. And, if you are on a full replacement dose, not relying on your thyroid for any of your hormone, then they won't affect you at all.
The best thing to do is an exclusion diet. Cut them all out, then reintroduce them one at a time and see if they affect you in any way. Goitrogens do not have sneaky habits. They are not working behind the scènes, wrecking your thyroid hormone replacement. They are up front, bloking the iodine uptake by your thyroid so that your hormone levels drop temporarily - I'll repeat that - temporarily. Once they're out of your system, normal service resumes.
By excluding them all from your diet, you are missing out on a lot of good nourishment. And it's totally unnecessary to do that.
The only exception to this rule is soy. That should be avoided completely in all its unfermented forms.
Thank you GG, no I don't know much about about Goitrogens - that why I'm trying to find out and can't - what TB infected gland was removed when I was a baby. When all my family who would possibly have known is now dead and it's just a fact I've lived with all my life, the of 67 is a bit late to wake up to the fact it is probably v relevant to all the health problems that have followed on!
It's the doctors will to want to know and get them to find out what I can't by way of what ever scans or tests would help. My operation and/or TB probably/possibly was the cause of it all going awry from day one. Perhaps Thyroxin will never be answer - I just don't know!
If your thyroid, for whatever reason, cannot make enough hormone to keep you well, then the only answer - at least temporarily - is to take some form of thyroid hormone replacement.
Whether or not they will ever find the reason for your thyroid's malfunction - or even bother to look - is another question entirely. But you cannot live without thyroid hormone, and there is not substitute for it.
Maybe Levo isn't right for you, but that too is another question. And the only way to find out what is right for you is to try different forms.
But I would just like to point out that I am not medically trained - thank god - I'm just a rather experienced and well-read fellow sufferer who has been done much harm by the medical community with their ignorance, arrogance, closed minds and lack of care. My life was saved by Mary Shomon and her forum over ten years ago.
That's why we need much more and better research into the whole of the endocrine system, not just the Thyroid on its own, things you and the other regulars including admins have pointed out for as long as I've been using this forum.
What cocks it all up is when 99% of GP's will only use TSH results. My doctor has already told me last time I saw him 2 weeks ago, he will not test again for Free T3 or 4. That's why it's another good reason to move well away from here to a different town and get a new doctor.
Did you ask him why? It's always a good idea to put them on the spot. They make half of it up as they go along! Calling them into question often helps clear their minds!
I was guilty of extreme soya consumption, which I'd relied very heavily on for the past 10 years. My fridge & freezer was full of the stuff for soya porridge, soya coffee (yeuk!) & tofu stir fries. I ate it every day, thinking it was a good source of vegetable protein.
I actually like it, so will have it occasionally for meals out, & still have miso & tamari occasionally as I'm sure I read fermented is ok?
Fermented is ok, in moderation. But soya coffee??? Really? Pretty sure none of that stuff was fermented. Tofu isn't fermented.
Soy is worse than other goitrogens because it isn't just a goitrogen. It doesn't just affect the gland. It also works at a cellular level, so will have an effect on your thyroid hormone replacement.
Soya milk isn't that pleasant for coffee, but I liked the ready made coffee milkshake type drinks, as I've a sweet tooth. All gone in the big clearout!
I bought organic Alpro, sweetened with apple juice. I think the only artificial ingredient was the c**p vitamin D2, which was a nasty surprise when I found out I was deficient on 200% RDA. >
Not so sure about the tasty coffee drink, though I really dislike anything with artificial sweeteners, so assume it was natural.
I've been following this conversation and I'd just like to add that if it wasn't for this forum we wouldn't have known about your advice SAMBS. So as well as looking at the information you're supplying I can look at what others are suggesting too. I for one am extremely grateful for ALL the advice on here and hopefully we can help and educate each other. As most of us have found out the hard way our GP's are a bunch of idiots where thyroid matters go and endos too for that matter (not all). But what I have found out from this forum is more than my doctor knows, as I'm now feeling better than I did when seeing him. Most of us only ever had our TSH tested before reading people's ideas on here. Plus, most of us are quite fragile mentally and physically so kind guidance doesn't go amiss. Thank you SAMBS though for the links.
My pleasure Karbon and I always advocate coming on here to post blood test results and to take .notice of the Admins for all the things they suggest you also ask to be tested. Vit B12 ranks high amongst suggestions and there is a specific website for that also - whose exact name I forget for the moment. When I find it, I'll come back and give you another reply.
My goodness SAMBS, that's quite an inflammatory post.
It wasn't meant to be inflammatory intentionally - it was only a suggestion but yes the title was deliberate to draw members attention to what can go wrong as well as right! Have a happy Easter cinnamon_ girl and of course, everyone else
HealthWYZD - yes I checked it out G - it's a media website that put a copycat image of the genuine HonCode symbol. A media website full of extraneous supplement providing advertisers! I read the information right down to the bottom, that's also how I saw it was a web magazine!
On a genuine HonCode site it says how long their Certification lasts. It's also possible to check their Certification by clicking on the link provided. I contacted either drugs.com or another one when I noticed their Certification period had expired. Here in France I was myself involved with a Cancer Charity called Cancer Suuport France. set up over 15 years ago by someone with cancer who could find no English speaking help or information. CSF over the years slowly built up a network of regional independent CSF Charities according to French Charity Law. I helped With setting up and running our own website. We had to apply for HonCode Certification and our President, although French, had worked and lived in the UK for over 30 years as a qualified Cancer Nurse or Sister with one of the large London cancer hospices, whose name I don't remember now. Our website aim had been to inform and advise English speakers and expats living in .france with cancer, with as much information for them in English, as they had wanted. She and her husband also provided respite care for a client who needed it, whether living in the Region or there on holiday from the UK. Our group all did training courses and became either Active Listeners, for patients or helpers at our monthly open days. I was involved as a Helper, although I also did a Training course. The Montpellier Cancer Hospital and Clinics also recommended their relevant patients use us for follow up advice and help, especially when making return visits to have chemo and needed translators to accompany them.
My brain haemorrhage put paid to that voluntary work, and driving plus I moved out of the area sometime later.
So now you know why I do a lot of research, using And recommending only HonCode or Trusted Websites that I have myself checked out for the quality of information they provide. Those sites, once you click their verify link will then put their own cautionarŷ advice on the information they supply._again it is down to the individual to check for themselves. I can't help in a physical and practical way on TUK as I was able to with CSF, but I have enough experience to draw on through my CSF involvement to know what is relevant and what isn't, hopefully 99% of the time.
We all have the right to express an opinion, which is really what the site is about. I would remain very ill indeed had I taken note only of governmental and pharmaceutical sites and remain most grateful to the many who have offered their opinion to me.
I very much value the admin team's input on occasion; having little doubt that they are doing nothing other than seeking to help those of us with a thyroid complaint and that their opinion is all they are giving. To me this voluntary vocation is a thing of wonder and thankfulness.
I notice pleas for T3 suppliers from virgin contributors and ignore them. I see posts for snake oil and ignore those, also. There are regular posters here who give links to arrant nonsense on occasion and after investigation, those too are ignored. You have to take what you need and ignore the rest, as with any forum.
If anyone is downright stupid enough to think that posters on a forum such as this are giving infallible medical advice, they have failed to grasp the nettle of this awful condition and need to return to square one.
Can I apologise if my input has added oil to the fire. I will however, not be told that there is one holy miracle of the thyroid bible and directed to a site - especially when I see that another (valued) poster has brought into question the merits of the original site's legitimacy.
May I ask (and I don't mean this in a provocative way) why you are on this forum if you don't think it helps people or others advice can be dangerous? People are only replying with the best of intentions to the questions asked. If this worries you so very much it may be beneficial not to be on the forum or 'switch channels' as it were. Sometimes people just need pointers as to where to start. We are all adults and make our own decisions at the end of the day. I think we all know we are not consulting doctors when we come on here. Just like it's not a consultation when you visit a website, it's different sources of information that you can choose to accept or not. And I think we have to ask why these forums exist? It certainly isn't because we are all well and flourishing from the official medical information out there that's for sure. The internet is a big place and there is space and need enough for forums like this as well as official medical sites. And I think we are grown up enough to know the difference. To suggest otherwise is as patronising as most of the doctors I have ever come across. However this is an open forum and people should be free to say, within reason, what they want to without ridicule and we should all respect one another, just as we have afforded you that same courtesy. So perhaps this forum isn't so bad after all eh?
Who is your reply aimed at Melody - me? For pointing out that if people whose symptoms don't improve or get worse could benefit from knowing if their Thyroid med or another one they took for a different condition may be stopping both from working properly therefore the reason their health has worsened!
Or overdosing on one or another vitamin or mineral their bodies don't need, because they haven't have the correct blood test? Suggesting reputable websites is not a crime, which is what I do to try and help people realise there are answers out there if they could be bothered to look for them!
Or perhaps you and others are too closed minded for that, not open to other ideas that encourage we take responsibility for ourselves - instead of expecting the charities they don't or won't Donate to, to use the volunteers and admins to do all the work for them instead, while at the same their own metabolic system and symptoms may continue to decline.
Just to be clear, a reminder - all members on registration are asked to abide by the site's posting guidelines (pinned on the right) where it clearly states that:-
"This is a patient to patient forum and no one, including the Admin Team, on this community should be assumed to have medical training of any sort.
It really is about being aware of possible interactions and acting on the advice posters offer accordingly and carefully being aware it might not work for you.
I also agree there are some lazy questions when all you have to do is google or try wikipedia rather then try the tireless admin and others willingly offerring advice.
That's true, everyone is right. It is a great site but there are guidelines. And I have been lazy myself lately and a bit obsessed with my blood tests when I prob just need another increase. I apologise, Night God Bless xx
Firstly, I have joined HU around 6 months ago to educate myself. I had never joined any forum before that or since that. I am a member of 3 sites within HU all relating to illnesses I suffer from.
I will never forget the people who responded to my first post. I know a lot about members through reading their profiles/ posts and replies, not only to myself but to other ill people.
To be perfectly honest, some replies on other sites will tell you what to take regarding supplements and ask you to report back to them with your decision.
Never ever have I seen this on TUK.
So I thank each and every one of you for your help on my journey to wellness.
To all who have responded to my Post - I would like to make it CLEAR I have not and am NOT rubbishing THYROID UK or their Charity. The variety of responses shows that our brains work, think and interpret as differently as our bodies and their reactions to Medications
thank you all for your responses and I take this opportunity to Wish you all a hopefully healthier and happy Easter
I would really like you to understand that my reply was not implying in any way that you were rubbishing TUK.
Everyone should be able to voice their opinions civilly, as you always do.
The times I have had a great chuckle, which I needed, with people here, are invaluable to me.
At one stage I sent a PM to you saying I missed your input on this forum because I did. You are an inspiration to me for what you have endured.
Part of the joy I get from being a member here is try to interact with people who know/feel their current Primary Carers are not fulfilling their duty.
Happy Easter SAMBS.. I totally got where you were coming from and appreciate the links of which I had no knowledge of, so thank you for posting them. Hope things are going well for you x x x
Let me simplify a point here; I have been a member of this site for a few years now and find it invaluable. I have found occasional answers annoying when emphasis has been placed on the thyroid being the cause of such and such in a factual manner when in fact it may be prudent to realise there may be other reasons/conditions for such and such not being considered. For instance weight gain, we all know this can be thyroid related but it can also be a cop out to avoid the truth of lifestyle habits and without an honest appraisal it is unwise to just assume it is thyroid related. It is important people state their views but emphasise it is a view from their own experience and not dominate the debate.
GPs should advise patients of possible drug interactions when they prescribe and the dispensing pharmacist has a responsibility to do so as well.
Most drug interaction can be avoided by taking thyroid medication 2-4 hours away from other medication and supplements. This is usually spelled out when members ask for advice about prescribed and OTC supplements and medication.
Thyroidless patients HAVE to take Levothyroxine, Liothyronine or NDT whether or not they have other health conditions where the treatment may adversely interact with it.
Members aren't required to state in posts that they are not medically trained when they offer advice. The Welcome Message and the pinned Site Disclaimers, Rules, Hints and Tips clearly state:
This is a patient to patient forum and no one, including the Admin Team, on this community should be assumed to have medical training of any sort.
Admins have been asked to add a disclaimer at the end of their posts because some members nevertheless professed to believe admins are medical professionals.
There is also an HU disclaimer on every page:
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Yes Clutter I have seen the TUK Guidelines on more than one occasion and have also said today I think that I am NOT medically qualified. However you are probably now reading my last reply of the evening mainly about HonCodes, that I have made to Galathea, which also includes my involvement with a Charity over here when I was able to do my bit - the health problem may have different but the aim of helping people if possible , remains the same!
However I do wish every member on TUK would read them and remember that also. I was not disparaging TUK or the good work done by the admins. I also have enough different health problems to realise the bad effects of taking 2 different drugs,,that had dire effects on me both times. Metformin and Thyroxin messed up my spleen, possibly toxicosis between them,,and duff blood cell counts into the bargain! I didn't know then as much as know now and am left with 2 Autoimmune conditions living In a house that has had 2 bad winters with Mold and damp, leading to my most recent I'll health episode where I am now being tested for Aspergillus.
This website is changing my life as we speak!! Thee is SO much information out there about thyroid , but what this site does for me is go through all that information, and bring back to us thyroid patients the important parts, I know we could all do this for ourselves BUT unfortunately we don't have the energy!! 😢😢
So thank you everybody on this site for all your great advice ☺☺
Drug Information - I post this for the Sceptics who replied to my post on here!
The Drugs.com UK Database contains drug information on over 1,500 medications distributed within the United Kingdom. For medications found in the United States, please see the US Drug Database. For other countries please use the International Drug Database.
SAMBS, the majority of people replying on here are not questioning your link. They are expressing dislike for your comments - both in the original post, and your replies. I Don't care about Drugs.com one way or the other. There are lots of websites that talk about drug interactions - in fact, if you Google any drug, the information found will almost certainly include interactions and side-effects. There's nothing new in that. And I've often said to people always research anything before taking it - although, I have to admit, sometimes one is so ill, one can't take things in, and that's where you need a site like this where others can explain things simply for you. In fact, I go one further, and every time someone mentions a drug they're taking, I Google it, just to educate myself. And I do it again and again because I can't always remember what I've read. So, please stop talking to us as if we're all mentally defective children!
well a " trusted medical website" seems a bit of an oxymoron to me -they are NEVER going to acknowledge any kind of alternative medicine or supplement as being useful or efficacious. A drugs.com website run by 2 pharmacists - how unbiased is that going to be?? as far as Im aware neither pharmacists or doctors know much about any other approaches to health than what bigpharma likes to promote and that certainly isnt anything other than orthodox treatments
Hi all, I am a bit late coming to this discussion and haven't posted in quite a long while. However, I would like to add my pennies worth in support of Thyroid UK. I was diagnosed as hypo back in 2003 and had never heard of hashi's, I was the ideal patient, ignorant, uninformed and did as I was told until I ran into trouble and discovered the horrors of hashi's and GP's.
TUK gave me a roadmap, I learned where to look, and what to look out for. I had considered myself fairly well equipped to research the web with a science degree in biology and organic chemistry but it didn't help me one bit, hashi's scrambled my brain, I couldn't concentrate or think straight and without that invaluable road map I would still be swimming around wondering what had hit me. I have researched on the web for years, have a bookshop and a chemists shop to prove it!! and the one thing I have learned is there are a lot of site's out there who are more than willing to exploit your misery for a quick buck. So thank you TUK, I appreciate you being here, your time and dedication.
What I have missed, someone on TUK will have picked up. Thanks again
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
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