Saw a so called thyroid specialist today. First endo in over three years. I was he would understand when I explained what I'm taking (200mcg levothyroxine and 50mg Tiromel. Straight away he said I am overdosing myself and I can get heart failure along with other serious problems because t3 is dangerous. He wouldn't give me a blood test, so how would he know I'm taking too much. I told him other people do fine on t4 and t3 and some even do wheel on t3 alone. Ignore them he told me. Don't believe anything on this site he said. I wouldn't need this site if I had been properly treated in the first place I told him. I explained all my symptoms but he brushed them off saying they may lo not be thyroid related. Rubbished. I used to be active and loved my job as a postman, but went downhill after the op. He wants me to come off Tiromel over six months so my Tsh can rise then decide himself whether I need t3. I said I feel a slight improvement on t3 as I was having trouble converting t4 to t3. I doubt it he said. You would be one of only six in the world who cannot convert . You would have a more chance winning the lottery. Now I can see why I read so many posts from frustrated people regarding their endos. Oh and I can't have Hashimotos without a thyroid gland.
T3 dangerous?: Saw a so called thyroid specialist... - Thyroid UK
I really wonder how 'educated specialists!!' can make completely False Statements about T3. If you're in the UK, it is all about the increase in cost by the suppliers and they've withdrawn prescribing for this essential and Active Hormone.
Why they make False Statements about T3 and also NDT, I have no idea. If anyone in their own families had hypo and weren't responding to levo, I am sure they would have to look at options.
T3 is the only Active Thyroid Hormone. T4 - levothyroxine - is inactive and it has to convert to T3.It is T3 that is required in our millions of T3 receptor cells and it makes us feel well. If T4 did that, we wouldn't be looking for Advice on forums.
As you have no thyroid gland at all I think it would be merciful and kindly to assist the patient to return to good health by prescribe T3 to the T4 inititally. If still not improving either offer T3 or NDT. NDT (natural dessicated thyroid hormones) is the very original hormone made from pigs' thyroid glands, in use since 1892 and saved thousands of lives.
Quite a number of researches have stated that many (even if they have a thyroid gland) improve when T3 is added to T4.
I do not know why 'professionals' keep making False Statements and they should be more knowledgeable instead of just looking at a TSH result to make their decision on how the patient is improving or not: rarely testing their FT4 and FT3s. Neither is more care given to ensuring vitamins/minerals are optimum.
We can live without T4 but cannot without T3 in the mix if feeling miserable on levothyroxine alone.
Read second half of following link;
I have been taking T3 only for the last four years and haven't looked back since.
The best thing doctors can do is 'look and listen' to their patients and take account of the clinical symptoms of which they seem to know nothing at all.
Thanks for replying so quickly shaws. He didn't really listen to what I had to say, only telling me what I heard before many times on this forum. Using the old and outdated method and try to act like the better one who knows everything. I will most probably give up on endos and carry on with sound advice on this site. At least on here I feel I am getting somewhere.
This is almost as bad as an earlier post where someone was told by an endo that T3 would drive them mad! Do they think people are so stupid that can’t just research themselves and find out the truth? The only answer is probably to find a sympathetic private endo as many here have done. I know it can be prohibitively expensive though and it shouldn’t be the only way to get proper treatment. I wouldn’t go back to that quack. No point. He’s clearly got the doctor/god syndrome. So sorry to hear about your experience. What a complete waste of an hour of your life seeing that idiot. And you won’t get it back. Don’t know how they sleep at night. Grrr!
Give them little training and they think they know all. Using any excuse to avoid dishing out t3. I read that post earlier, shocking. Shame because the NHS ha e been good to me all my life. Endos are a different matter.
Absolutely. And as I’ve said before, you listen to the gears grind into reverse if Levo suddenly becomes incredibly expensive and T3 becomes dirt cheap. Can guess what we’ll all be told then. Why can’t they just be honest and say ‘It’s too expensive unfortunately, the NHS can’t afford it. If the price comes down and we hope it will, then we can prescribe again. ‘ Don’t treat us like we don’t know!
I’m wondering which T3 you take ? I’ve been on Nature Throid for a year now , but not feeling great now - palpitations- breathless on walking up slight hills & fatigue in afternoon has returned and fluid retention- am eagerly awaiting my first MEDICHECKS bloods 👏
I went like that on nature Thyroid after years on it. Results were good on paper for dr's, but I decided I couldn't continue. I just take straight T3 for last few years now. Easy to dose and control if over or under medicated and easy to read bloods and I go by how I feel and temp and pulse and BP. I actually feel alive now.
The mix of combined T4 & T3 proved no good for me. Also I've no antibodies after 20 years of hashimotos but I started getting flare ups and I believe it was because my immune system was targeting the thyroglobulin in the NDT. I'm gluten free lactose free. And I've done them all. Mono, combo, NDT now T3. 🙄😏 Talk about patience we all must have.
I notice in a previous post you mention you have upped the T3 slowly and you feel good for a few days, but then you go back to normal. Is normal just feeling a bit rubbish ?
How would you compare life with the T3 to before when you just took the T4 ?
It sounds to me as though the body is not able to process the thyroid meds you give it and it just closes down after an initial uplift. Would this be the same while going up with the T4 ?
Hi marsaday. I initially do feel a bit of strength coming back but the aches are still there. But strength goes as the week goes on. My job can be very physical, probably one of the reasons why I feel better at the start of the week. And ventnor on the isle of wight isn't the easiest place to be a postman.
I don't think your physical activity has anything to do with being tired etc.
Do you have any other blood test info while you have been on the thyroid meds ?
Seeing where testosterone is and SHBG could be very important, especially as you have weakness. If you have normal testosterone but HIGH SHBG this means you actually have very low testosterone levels and so you get problems.
As men age SHBG increases and is the reason why many men have low testosterone issues. You are certainly at the age where this could be happening.
However we need to add in another factor to this and that is the high amount of thyroid meds you are using. Too much thyroid can also cause SHBG to go up to much.
So it would be a good idea to try get your male hormones assessed.
I am thinking you are on to much overall thyroid meds because increases are not helping. When someone keeps upping the thyroid and they are not getting consistently better then the answer is not more thyroid meds.
So the thing to do is to try out LESS thyroid meds and you do this in a controlled and systematic way.
I would want to see what life felt like on a much lower dose of T3. The way to do it is to use 1/4 dose amounts tomorrow. This means having 8 portions ready with you while you go about your day. Take your T4 as normal and 1 x 6.25mcg dose of T3.
Now wait and see how the day goes before you add in any more T3. Ideally you wouldn't need to add more T3, but if you start to feel bad you would take another 1/4.
I don't know what your exact symptoms are and for some people they can become really moody if they don't get the correct amount. For you it sounds like your main symptom is muscle ache. So missing a lot of T3 might not be that bad.
One more thing which you have over looked is using T3 in very small doses. Many people never get to find out if just a little T3 is all they need and they start on a small (but really very big) T3 starting dose. A quarter tablet of T3 is actually a very big dose according to Dr Blanchard. So it could well be worth trying a really small dose of T3 if you get round to going backwards with the T3 dose.
SMALL = approx 3mcg of T3. This is 1/8th of a 25mcg size tablet and is the smallest i can cut it into using a stanley blade. The ideal starting point is 1mcg but getting a tablet down to this size is not practical really.
Don't you mean reduce? Is too big a drop of t3 ok or reduce as you say quarter at a time?
Yes reduce but do it in a way on the first day where you use 1/4 doses added every 4hs.
You go by how you feel. So if you feel good after the first 4hs don’t add the next dose. Keep holding if all ok. By the end the the day you may have taken much less.
Stopping the t3 for a day or two will be fine but how you feel is your guide.
I would just stop all t3 for a day or two to see how I felt but I have given you an option to keep taking the t3 but in small doses so you give the body time to show you if it needs more rather than less
Did take a testosterone test with blue horizon it came back ok. Didn't know about anything about SHBG levels.
Just testosterone? What was the result
T3 is well know to cause muscle weakness and I think it is due to increasing shbg which gives low testosterone levels and so the weakness
Mind you my downstairs department has only been working part time. Thanks marsaday, ill get the shbg test done to see if it could be part of the problem.
I had awful muscle weakness when on Levothyroxine- told GP SHE just tested my liver ! Now I’m on Nature Throid my arms are really bad - & painful - but legs have greatly improved ! It’s so frustrating
It takes some time for the body to acclimate and know what it wants to do . Meanwhile you might want to supplement with magnesium . Magnesium is very important for our muscles too and that includes heart muscles as well . Taking a pinch of Celtic Sea Salt is very beneficial as well . It's not always the thyroid hormones that are at fault . We have to look at the big picture . Lab values with thyroid ranges and nutrients will help us decide what needs to be tweaked .
This endo thinks he can get away with being rubbish, because you're located somewhere with a lot of nursing homes and an aging population. The majority of his patients probably are none the wiser and suffering as a result.
I agree with Slow Dragon that you should try some better supplemental folate. I'm definitely not an expert on male hormones, but I'm following the train of thought on this being a potential problem. I do know that low testosterone reduces your serotonin levels. Even though the Isle of Wight is generally sunny and you're outdoors a lot, it'd be worth checking your Vitamin D levels as Vitamin d works as a 'master' hormone.
Aches and pains are reduced by using Magnesium Sprays, Epsom Salt baths and Magnesium Citrate, 'The Magnesium Miracle' is a very good read if you can get past the author promoting her products (she is very knowledgeable but is a bit of an entrepreneur as well). Magnesium just relaxes the body, reduces inflammation, protects the heart - especially while on thyroid meds and makes it just easier to move (a bit like oil in a gearbox). If you're taking B vitamins, or Vitamin D you should be taking Magnesium as well. I know for definite that it's helped me - as I used to get a lot of backpain. No painkillers for me these days.
Dr Mark Sircus also good on Magnesium Knowledge. H e says most people are magnesium deficient, he has several youtube videos and several ebooks. Worth a look?
I certainly will, thanks. When I mentioned the Carolyn Dean book to some in my family they thought that the author couldn't be trusted because she was selling something; but, her research, although not complete, I feel, is going a long way further than many have done before. Also, the obsession with Calcium has been responsible for many overcompensating and ignoring Magnesium and other important vitamins and minerals to their detriment.
I agree about Carolyn Dean and selling things. She does talk a lot of sense though. Another book 'The Calcium Lie by Robert Thompson and Kathleen Barnes was an eye opener for me . . . . This book covers many subjects not just calcium. He even knew all about thyroid issues - more knowledgeable than any so called expert I have seen.
Your previous post shows extremely low folate and B12
High TG antibodies can be due to Pernicious Anaemia or other things, not necessarily Hashimoto's
If B12 or folate are low you will struggle to use any thyroid hormones
Suggest you get DIO2 gene test this can help prove conversion issues if you test positive
My gp gave a three monthly b12 injection and frolic acid.
Only getting and injection once every 3 months often not frequent enough
Ask PAS healthunlocked for advice. They are the B12 experts
Folic acid is not the same as folate
Perhaps try a daily good quality vitamin B complex, one with folate in not folic acid
If this doctor is not aware of the benefits of T3 and when it is needed. You could refer the doctor to read: amjmed.com/article/0002-934.... There are many papers about how T3 improved the lives of people; from children who had not grown in height as expected, who with high dose T3 grew normally and other cases where problems were overcome with T3 meds. In the 1970s and 80s dosing amounts were a lot higher for thyroid meds. May have been high prior to that as well.
Are doctors just acting dumb that they don't realise T3 is the active hormone and is utilised so much? Are they turning a blind eye to all this?
I have often wondered this myself. The link you posted didn’t work though*
In UK it's down to money as the cost of T3 went up something crazy like 300% - all very convoluted.
In fact the price was increased by Concordia by 6,000%
Yep that's the one thanks . . . I knew it was a multiple of 3!! so instead of GP bashing (and they really shoukd be up front about the cost) we need to be demonstrating outside Concordia, writing to MPs etc. I wonder how many of their shareholders gave thyroid probs?
There is a great deal of proactive work going on Catseyes235 especially between the FB group ITT (Improve Thyroid Treatment) Campaign, ThyroidUK, Lord Hunt of Kings Heath and another thyroid group which I always forget lol. If you're not already a member you could join ITTCampaign and be part of the effort. But I think one of the (many) disappointing aspects of all this is that the CMA investigated Concordia and provisionally found it had abused its dominant position to overcharge the NHS but nothing has happened since, regarding upholding the provisional finding and enforcing any financial penalty. Then the delay was explained by further representation having been made and being under consideration ... I don't know where the case stands currently but bizarrely - or unsurprisingly - Morningside and Teva then entered the market at almost identical prices.
Price fixing is also questioned whether it is supermarkets and tins of beans or pharmaceuticals . I am beginning to feel government, like our local council in the face of developers is toothless in the face of big money. I know my local MPs mother was on thyroxine. May pay him a visit again.
Just checked the link, it says
"An error has occurred
The page or action you requested has resulted in an error. Please go back to the previous page by using your browser's Back button, or visit the Home Page.
This page does not exist"
just remove the full stop from the end of the link
The late Dr Skinner said that his patients who had had a total thyroidectomy did best on natural desiccated Thyroid.
I'm still reeling from the fact hexdoesntvthink you aren't converting well. Well we need your actual results to see that butvits only obvious if you are on T4 only and have both FT4 and FT3 results to compare. It's a very common problem and can be helped by getting Vit D, B12, folate and ferritin results optimal. I managed to get mine spot on by supplementing though I don't have antibodies so not sure if that makes it easier or not. T3 is not dangerous if yo know and understand what you are doing, him thinking it is suggests he hasn't much idea!
As you are on such a high dose of T4 + T3 and you have other deficiencies, I'm wondering if you have gut issues that are preventing you from absorbing your meds properly?
If so, you might want to consider doing some gut healing work.
This is what concerns me, I have refused to restart Levo thyroxine after taking NDT for 2 yrs, my mental health has been far better & upto recently my bloods were in range. Dr referred me to endo to find alternative. When I was on levo- it was like I was living under a depression cloud. Never again.
I’ll see what the endo suggests in 2wks time, but no way will I be bullied to retake the evil Levo stuff
"You would be one of only six in the world who cannot convert ."
Are those six all on this forum???!!! He may have been correct and you are overdosing on thyroid hormones but his attitude seems dreadful! Doesn't he understand that you are ILL, and desperate to feel better? If he thought your symptoms were not thyroid related why didn't he test you for other causes (as suggested here)?
I'm just guessing, but it does sound like a personality clash as well. Maybe your manner was too assertive for this particular endo so that it became a battle of wills instead of a healthy doctor-patient relationship? Not your fault - you just want to feel well, - but perhaps he couldn't cope with having his position as "Expert" threatened. Especially by a mere layman who throws all this Thyroid UK stuff at him!
Maybe you can find a sympathetic doctor or nurse in your own practice who is willing to listen? Be helpless and humble - something most medics - especially females - can't resist! Tell them how desperate you are, and you are afraid of losing your job if it gets any worse, plead, grovel if you have to! But don't lay it on too thick or they will think you are pretending
P.S. The endo was probably right when he said you don't have Hashimotos. Hashimotos is when antibodies attack the thyroid gland, but if you don't have a thyroid any more they have nothing to attack - even though they are likely still in your bloodstream. And of course that slight mistake would further convince him of your "Ignorance".
Hidden Once you have Hashimoto's you always have Hashimoto's, it doesn't go away even if you had a TT and there was no thyroid tissue to attack. However, I'm horrified that in 2018 you would urge a thyroid patient with a genuine illness, to be "helpless and humble" and "plead and grovel" especially to "female medics"!
It was just a suggestion, Maisie, and I agree that "Grovel" was a suggestion too far. I just put it in an exaggerated, joking way to make a point. Tactics - if one approach doesn't work try a different one.
You can't defuse aggression with aggression, only escalate it. And isn't it true that most kind and caring people - especially women - can't resist someone who asks for help instead of demanding it? It's still possible to be assertive as well, though I'm not very good at it myself!
Technically it may be debatable if you can have a thyroid disease without a thyroid, but certainly not worth arguing about! I was merely trying to understand where the endo was likely coming from and it seems that's what he meant by his comment. Like saying that a car without wheels can't have a flat tyre!
Understanding what makes someone tick, and adapting your approach accordingly is a step towards building a working relationship. That particular endo sounds like a lost cause, but the principle of "Softly, softly catchee monkey" often works to defuse aggression and get someone on your side, especially if they are the type to easily get offended.
By the way, what has the date got to do with it?
I have been told im going to get heart disease and have crumbling bones from having a too low TSH and tried to lower my meds even though I have no thyroid....I believe that endos want us sick.
Total thyroidectomy patient used to take 200/400mcg thyroxine a day, that was before the TSH testing, hence TT patients had their meds reduced. Dr A Toft recently published a paper regarding too lower doses being prescribed. ‘Thyroid hormone replacement - a counterblast to Guidelines’. This is well worth a read.
Find someone who knows what they're on about I reckon. Which is easier said than done.
This is a standard reply as set out by Nice. There are lots of people that an endo once told me that need a kick in the pants to get going with small amounts of T3. However overdosing, is a big problem Karen carpenter was over doing it on T3. Its not good for the heart and cause calcium depletion and cause problems with your bones in later life.
I keep on banging on with this site, its not Thyroxine all the time. Its can be your sex hormones and to be blunt they are not there just for sex. They also control for your well being and energy and muscles. Also your adrenals ie DHEA and pregnenolone, these levels must be right alone with your Testosterone and Oestrogen levels. its hard.
BE WARNED the when your levels are right TSH and I suspect you will still feel rough they will give you antidepressants. THis is to change until an endo is sued and the case won.
The problem with Endos is that when you give them all the evidence on paper of private tests that show adrenal exhaustion (saliva test) plus DHEA levels being through the floor not just low, Testosterone through the floor, along with progesterone, rock bottom vitamin levels, low zinc and under range potassium, H.Pylori and parasites in your gut, they say to your face 'i will be discussing your very interesting case with our multi disciplinary team and will notify your Dr, next please!' However said letter arrives and he has ignored under range DHEA levels, & salivary test because his gold standard synacthen test was fine and ignored low testosterone and progesterone and everythingelse and recommended the GP stop your adrenal support and thyroid support because you don't need it! (If i hadn't bought my own thyroid and adrenal support and sought help privately, I would not be alive still). Their arrogance knows no bounds . . . . . . . . . .
My endo singled out ThyroidUK's website as one to definitely NOT trust too...
I told him that if it hadn't been for ThyroidUK, I would still have been walking around like a zombie without my business that was going down the pan as well as the BA (Hons) degree I gained after my then, far more expertise, endo put me on T3 after I spoke to him about all the symptoms I was suffering!
In addition, I told him to go and have a good look there and educate himself about the thyroid as my suspicion was that he was obviously a diabetics man!
I don't think he liked that much... he told me he was the designated endo that was going to give me the bad news that my T3 was being withdrawn by the CCG, but I managed to wipe the smug smile off his face when I told him I lived over the border in Wales where he has no jurisdiction...
I left with mt T3 prescription intact for another 12 months!
Then, as I was walking out the door, he asked me if I sourced my own T3 too and then asked me for the contact details where from... for any of his other patients who might want it, of course... and send them in a letter marked private & confidential, so his secretary wouldn't open it...
I smiled sweetly and said: "Of course..." adding "when hell freezes over" under my breath.
'He wants me to come off Tiromel over six months so my Tsh can rise then decide himself whether I need t3'. This statement alone would be worrying if it were true. He already said T3 is dangerous bu he may consider giving it to you after your TSH has risen?
I despair at the downright arrogance of these so called specialist who subject us to suffering on a massive scale. As for 'one of six in the world who cannot convert' . . . . words fail me! Dump this idiot would be my advice. He is not 'ever' going to do you any good . . . .. ..
Good comment Furface (love the username!) Let’s let your TSH rise and I’ll watch you get really ill... FFS. Is this some kind of sadistic experiment?
I am so sick of hearing about how bad T3 is. It's what's keeping us alive. And as you all know T4 turns into T3 hopefully for your health sake. Anyone that over medicates on straight T3 won't continue for long unless they want to feel like hell and die. Same goes for any Thyroid hormone. You keep in a therapeutic range that keeps you well. So no need to be scared of T3. It's a god particle used properly.😘😘
I think that you need to find a doctor that is more open minded and up to date on current treatments. I stopped going to an Endo for the same reason, I do not convert synthetic T4 to T3 very well and she flat out refused to add T3 to my treatment. NDT was also flat out refused. Thankfully I talked to my GP and he added some NDT to my treatment along with the Levothyroxine. (he had a couple of new patients that had moved to Canada from the US who had prescriptions for NDT from their Dr in the US. He found that by adding NDT along with Levo to be beneficial). I do feel an improvement and hope that over time he will increase the NDT and decrease the Levo. I also gave a copy of the book "Stop The Thyroid Madness II" to my doctor to read. You have to consider that allopathic doctors are trained to only prescribe Synthetic T4 so many of them are not willing to use any other form of treatment. When hunting for a new doctor ask questions of them first about their openness to using alternative treatments. Good luck.
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