On my FB account I somehow hooked into this thyroid group with gut issues.... anyway one girl was on complaining she has been thyroid-less for 12 yrs on Levo only and the past few months she hasn’t been doing so good she states she has symptoms of being hyper and the doctors say her thyroid levels are good but still wanted to lower her meds just a bit (no results) other than low TSH level, no other test performed 🤷♀️ according to her and she is still suffering with on and off palpitations that took her to emergency room they could find nothing wrong again according to her and she was heading back to her doctor to do another thyroid test soon which I’m assuming will only be TSH.
Anyway I just suggested after she see’s her doctor to ask if she can try T3/T4 combo instead on T4.
Oh my gosh you might have thought I murdered someone with the snarky comments telling me that I shouldn’t suggest T3/T4 combo since they aren’t safe and even without a thyroid she would still convert T4 to T3 just fine...
Geeze why are people so resistant to trying the T3/T4 medication and why does everyone attack you with google information about it being unsafe ... My Endo put me on combo and I’m fine and yes I guess it wouldn’t work for some, who knows .. people are crazy!
End of rant!
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Batty1
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I thought most people were fighting to get on T4+T3! I didn't know that patients thought it was dangerous. They must have been listening to their doctors! Sorry, but that makes me laugh!
Seriously, though, I avoid Facebook thyroid groups like the plague because there's no end to the weird things you can read on there.
You did what you thought was right, and offered up advice, from your own experiences...perhaps some kind soul on the forum, needed your advice too, and after reading your post, decided to try the combo, and because of you, are on the way to feeling better soon...so perhaps you did help someone; what's the saying, "you can't please everyone" just ignore her rude rant, and don't let her stop you from being part of this invaluable forum.
I'm no doctor, but I would have thought that, had someone 'lost' their Thyroid, then they would need to take both hormones.
Take care
There is a FB group for those without a thyroid gland, suggest she joins.
Without a thyroid and after RAI I suffered 8 long years of residual thyroid issues, a great deal of it was fatigue. Spend an hour mowing the lawn on a Monday and I'd be lucky to be able to walk 5 steps before Friday.
There's only one answer for this which is NDT. There have been reports online that combined treatment T3/T4 is better than Levothyroxine alone, but is not as good.
My CCG agree with all the medical professionals as to why is is correct to blacklist NDT, but when pushed a bit gave me an appointment with a consultant in an NHS hospital who was only too willing to give it me, but on a PRIVATE prescription, ie I had to pay. She was NOT an endocrinologist, she was a SURGEON!!!!!!!
Do you need private script to order from Thailand please, my doctors won’t give me anything but levo. I don’t have the option to change doctors as I’m already house bound with other health issues
No you don't need a prescription and you can order it online but unfortunately there is a delay in orders because of the coronavirus. It has also doubled in price I'm afraid because it is very scarce.
Thanks, I’m unmediated since last August and was borderline, very high TSH and not feeling well but doctors won’t help me. I wouldn’t know were to start 😢
Why don't you start a new thread and tell us about yourself. You don't need to share personal information if you don't want to but just a history about your thyroid disease including any blood results you have. Members will then be able to help and advise you.
You can put your history into your profile - that is the page that should have some history in it and if members want to read it, then they don't have to ask you the same question over and over.
You click on the members' names if you want to know their thyroid background. Most complete it.
Hi I’m fairly new to this forum and would like to say that it is lovely that you have offered advice to try and help someone. I have learned so much here reading different posts and the advice that I have had. Much better than what I get from my doctor😀
I deleted my Facebook account 7 years ago too many nasty people on there, stick with this site or maybe offer her the link to this one, cant stand Facebook
I just rejoined facebook after a 10 years absence because I was hacked. I wanted to see if I could book an appointment with my nail salon who are taking appointments on there for when they re-open. I didn't give any information about myself just my name but they know where I am because people in the area I live in started to pop up. I will be leaving again once the nail salon opens because I find it very intrusive and a bit like big brother watching your internet activity.
Batty1 at least you tried to help but some people just don't want to be helped and believe everything their GP and the internet tells them. I was once like that and I ended up feeling very ill. Thank goodness we have sites like this one and others in the US that helped me. I have no idea if I would actually still be alive after being left for over 2 years with no treatment because doctors told me my results were "normal" and I was suffering from the menopause and it was all in my head.
I asked my doctor yesterday about being tested for T3. And she said to me the reason they don’t test for it is that it’s dangerous. It was the first time I’d heard this - I don’t really understand why. Anyway I said well given I don’t have a thyroid (post RAI) isn’t it important to see how well I convert T3 and then she agreed to test it. So if she tests it and it’s low but thinks it’s too dangerous to prescribe, then what’s she going to do...just leave me to suffer...
I actually had a thyroid storm last July and went to my GP as instructed by the A&E Consultant. My GP requested a full thyroid function test and when I logged into Patients Access the Lab had just tested my TSH and because it was within range hadn't tested either the T4 or T3. They had decided to do a liver function test for some obscure reason and my GP hadn't requested that. I have decided to continue to do my own blood tests and I won't be going back to my surgery to ask for any help with my thyroid condition because quite frankly they are useless. My GP actually admitted he knew nothing about thyroid disease and I felt like telling him to go and read up on it like I have been doing for the last 12 years!
I am in dispute with my CCG at the moment regarding stopping prescribing T3. I wanted to know why, if I needed it 5 years ago (diagnosed by NHS endo), would I suddenly stop needing it now (when the price goes up, although I did not add that). Their answer was that research has moved on and 5 years ago that was what was known but now it is known that T3 is dangerous. I have pointed them to the Tears study. I needed T3 prior to it being prescribed, and I was told it was dangerous then. So it was dangerous, then it wasn't dangerous and now it is dangerous again. I keep telling them that thyroxine alone does not work but they have conveniently ignored that. I have pointed out to them that I have been taking high doses of T3 for the last 20 years and have not had any of the dangerous things they have mentioned.
How can T3 'be dangerous' as it is the 'ACTIVE thyroid hormone' required by our whole body and brain and heart contain the most T3 receptor cells.
It's a pity their training is so poor and it's just like we've opened up a cookery book where it states "a certain amount of flour and margerine etc'. and we throw in this and that and may be surprised that it doesn't look like the picture of the finished article. The same with thyroid hormones, the professionals seem to have no clue what Action both T3 and T4 have in our bodies and which part of our bodies need the most T3.
If T3 was 'dangerous' a majority on ths forum would not have survived or had relief of clinical symptoms.
Of course it’s safe if it’s needed. I tested my FT3 privately and I was under the range. I saw an Endo from the list and he prescribed T4/T3 combo for me. I was able to lose some weight, my hair stopped falling out, my finger nails grew and a missing toe nail grew back. I still feel unwell though but that’s another story ........
I’m not medically trained and this is just my personal experience.
A couple days ago I finished reading a book “The Thyroid Sourcebook for Women” published in 2005. Quite useless reading I would say maybe apart from women with thyroid cancer.
This is what the author says about T3.
“In recent years it became in vogue for thyroid patients to request supplementation with a combination of T3 (Cytomel) and T4 (levothyroxine sodium). Patients’ experiences (called anecdotal reports) with T3 abounded on the Internet, while certain books and articles about T3 supplementation reported that it helped with “brain fog”, depression, and other apparent symptoms of hypothyroidism. … Unfortunately, thyroid patient advocates and thyroid patients on Listservs continue to cling to the T3/T4 combination therapy as the answer to “living well” with hypothyroidism. The only patients who should be on the T3/T4 combination therapy are those patients who have just had a withdrawal scan that checks for thyroid cancer recurrence, and are temporarily climbing back up to normal levels of thyroid hormone. Otherwise, as of this writing, anyone that suggests to you that T3 should be added to your T4 is not up-to-date, or does not understand the medical literature adequately enough.”
It looks like the conventional attitude has not changed in the last 15 years.
I actually think thyroid disease treatment has gone backwards instead of forwards. Years ago before blood tests were available doctors went by symptoms and patients were given NDT. If only they were interested in symptoms now ... sigh. I once sat in front of my GP with my head balding and my nails dropping off but he was only interested in the TSH blood result. He then offered me antidepressants when he should have been offering me Levothyroxine.
I’m guessing she like to keep her pockets lined by keeping her patients sick... just because you sit years in school doesn’t make you smart just persistent!
Ha ha - quite possibly is a vogue - internet was getting popular and people were finding out why they were feeling rubbish all the time despite taking thyroxine. So I should imagine there were indeed lots of people asking for T3. These people always tend to put the horse before the cart. CCG told me that if I was given too much thyroid hormone it would stop my thyroid from working. I pointed out that if my thyroid was working I would not need the thyroid hormones in the first place. It is so obvious they are trying so hard to make the crime fit the punishmnet. They are saying that a lot of people who are ill and are admitted to hospital will have a low T3 so no point in testing them or giving them any. So the illness makes the T3 low - why not the low T3 is causing the illness? And therefore testing and giving T3 might help to get them better. I was ill last year, my T3 went below range and TSH increased. I think it was the low T3 that caused it, because when I took T3 it went away within hours. Next thing they will be saying it is the symptoms that cause the illness.
There is this strange, hostile attitude you get from doctors. I think that's why people were snarky instead of just interested or even disbelieving like you might get if someone was telling you about something that had helped them!
Occasionally doctors stumble into this forum and you hear that attitude again - they think the sky will fall down if a few people regain their lives with T3
I think a lot of doctors are reading this forum and are too frightened to challenge some of us because they don't know much about thyroid disease. My GP admitted as much and gave me a referral letter to use for the Endocrinologist of my choice last year. It was badly written and had spelt Graves' as Grives' and said at first doctors thought I had mental health problems! I threw it in the bin and I think I will go it alone because I can buy what I need on line and pay for private blood tests etc. Of course I will see my GP if I have a bad cough or there are some worrying symptoms that might indicate cancer but I won't be asking for help with my thyroid disease. I simply don't have any confidence in getting the right advice or treatment because of my past experience with a so called expert Endocrinologist.
When I - finally - diagnosed myself - no doctor or specialist (latter paid for) could diagnose me and I even underwent an anaesthetic for a wrong diagnosis. I didn't get my money refunded and I still remained undiagnosed. Another private doctor told me I had 'acid reflux'. Neither could my GPs diagnose me. Neither could the A&E after an overnight stay and running on a treadmill and discharged with 'probably viral with a higher cholesterol'. The latter should have been a 'red flag' but isn't.
I take a T4 T3 ....It's the only thing that had me feeling better...I can't believe some people apparently they don't do any research she probably is ok with getting her TSH and T4 tested also....I just don't get it
A lot of elderly people don't have internet access so they cannot really do research. My Dad who is 78 will only listen to his GP and nobody else and I think many people are the same. Not every one is net-savvy unfortunately.
There is a really useful Canadian Thyroid site that has a lot of new research. Paul Robinson seems quite impressed with it, for what that's worth. Point is, they have research that shows there is much more evidence that excess T4 causes cardio problems than T3. Not sure what the rule is about linking to other sites so I won't, especially as we are discussing people who seem resistant to advice anyway, but google should help anyone who is interested find it.
Oh the snarky lady who commented did look it up in Google... problem is the original poster has been thyroid-less for 12 yrs and only ever had TSH tested according to her post!
That's intetesting, I hadn't heard excess T4 was linked to cardio problems.
That seems to be the experience I'm having. I'm on a high dose anyway but have started to have heart problems that are improving as I swap out NDT for T3.
Seen this research, high ft4 can be a longterm issue. I am reducing levo and increasing t3 and my heart is calmer, my pains went away and hot flushes are diminishing!
I was without thyroid and without thyroid replacement for few years, I was nearly dead, slipping in and out of coma. 2014 Xmas I told my husband I wouldn't be alive by the next Xmas. I started researching and found TPAUK and this site purely by chance, what an eye opener, all of a sudden I wasn't alone, there were thousands of other women going through the same thing. I was handheld from day one, I was told what tests to get done, go see Dr peatfield, order NDT, from start to finish. I got educated and started bollocking my GP, I took both endos from same dept to ombudsman, I won but it changes nothing, they are still in same dept, utterly shit at their jobs, they had to do extra training but doubt they did.
I started to take charge of my own health. My GP surgery closed 6 months after apologising to me, seems he made far worse mistakes and was being sued by a group of people mainly for overlooking obvious cancers 2 in one family who died! One elderly lady was told she was smelly, so she was too ashamed to get a huge ulcerous growth looked at and died! It disgusts and appalls me that these so call professionals are so unprofessional, so useless and have no shame.
Had others not shared their experience and helped me I would be dead, it's that simple. I am only interested in other people's experience, not a single published paper has helped me.
With regard to FB, you can not help those who won't help themselves, it's a leap of faith. I also think some stay ill out of ignorance and martyrdom! I have worked my arse off to get well, still am 😃 lol that's my rant over.
Why were you not given any thyroid replacement? I find that appalling and I have read a lot of stories about people being left untreated by doctors but never one like yours. Perhaps you could put your story on your profile page?! I have put mine on my profile and you can read it if you are interested.
No treatment because and i quote 'how can it be your thyroid, its been removed, we have removed the problem' they thought i needed HRT, anti D's, IBS treatment, industrial strength morphine based pain killers 8 a day, sleeping tablets, anti anxiety diazepan, statins, the list was endless. I kept saying i hadnt felt well since operation, they just thought i was wasting their time, a hypochondriac, when actually i was dying! 5 years of my life in chronic pain, drugged and sleeping.
After i started getting better i went back to GP he said 'omg you look great'...then went silent....i gave him a hard stare and he said 'omg dont tell me IT WAS your thyroid after all this' tbh i cried (nearly am writing this) he apologised, he just thought i was a over weight, middle aged, 'losing my looks' menopausal, weak minded woman, he never for a moment thought there was actually anything wrong with me, that it was all in my head, even though i had no medical problems at all until thyroid removed (in hindsight i can see symptoms a year before) i was a competitive sports woman. I have never regained my strength or stamina.
That is disgusting and makes me wonder if they actually went to medical school. The thyroid is the powerhouse of the body and it controls metabolism so nobody can live without replacing the hormones that it produces. I hope you reported the doctor concerned.
Yes all went through complaint procedure dr & 2 endo's. I was taken on by NHS & local medical teaching university to give talks about what happened to me. In 2 years not a single final year med student was interested in Thyroid, it is literally an afternoon spent on tsh & levo.
in that case Scrumbler, I am destined for hell 😂 loving Beelzebub's t3, thank God...or Satan shall I say
T3 dangerous? Someone lost their marbles. Or is it dangerous to NHS pockets? Wait, or is she a doctor because that would explain this misinformation Does she know she produces her own t3 (well, not enough it seems)?
You have tried to help and you got abuse. Not worth it, some people need to learn the hard way and one day she may learn.
I’m a few days late to this post but I’m sorry you had to go through that 🙁. I truly know the feeling of being unduly attacked or ostracized as I have had many similar experiences with people like that on online forums/platforms and, in my honest my opinion, you said nothing wrong or insulting. Even if people didn’t agree with your comment, they didn’t have to be so rude and aggressive about it.
Unfortunately, social media sites, forums and gaming platforms on the internet that are free or easy to join seem to be an invitation for the worst kinds of people (who are complete losers in real life and thus see the social aspect of the internet as an outlet to belittle others to compensate for their bottomless insecurities.) It’s very rare I come across an online socializing site or forum of any kind that doesn’t mostly consist of toxic behaviors and communities.
It’s also very distressing when we look to socializing on internet platforms as a means of getting away from the stressors and hardships of our surroundings and the toxic people in it only to experience it all over again online! Toxic people seem to be everywhere, nowadays 🙁.
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Waste of time/money (just a wee rant)
Rant!
Need to have a bit of a rant!
NEED TO HAVE A RANT!!!!!!!
Medichecks - Small Rant
