My Edno constantly nagging me to reduce T3 I resist and as I say I am feeling better for taking it . she prescribes it 60 mcg per day but writes to my gp saying I am well and doing good but that she suggests lowering the amount however I am reluctant to do so.
She sends me to Rheumatologist for bones as she says T3 will damage my bones. Rhuematologist says he could give me an infusion as my hip reading is -4.5 but my spine is -2.8 however he said he will not give me anything whilst I am taking something which is detrimental to my bones. ie T3 he went on about me using T3 for all the wrong reasons and how bad it is for bones.He was quite nasty, I tried to explain I take T3 because it keeps me without too many hypo symptoms and relatively healthy and that I am not using it to try and loose weight because it doesn't work like that. He is basically refusing to treat me. he is about to write with the dexa scan results to me and my gp. If he repeats this threat not to treat me (I have already told him I don't want an infusion as I am having a lot of dental work done at the moment so it would not be sensible, also I cannot take adcal as it upsets my stomach, and have asked him if there is anything else I can take that will help protect my bones) Who should I turn to would it be the CCG. both the endo and Rheumo work in the same hospital and I feel they are ganging up on me in order to stop me taking T3. I think at the moment our CCG have not issued a mandate on T3 as my gp is still issuing prescription, although a couple of years ago he said he was not going to keep supplying as it was so expensive and I went to the CCG and asked them why he was refusing it to me and they must have told him to continue as he has been supplying ever since. It's so hard to get the medics to treat and do the proper tests at the moment endo refused to do antibodies but has agreed to do B12 nobodies I have to ask for colesterol each time. I take 250mg Thyroxine and 60 mg T3 have reduced T3 from 120mg to 60 mg cant say this reduction has helped put on a lot of weight have manage with the help of my pharmacist to optimise T3 effect and loose some of the weight do swimming ,yoga twice a week play bowls Run an Art Society and take responsibility for my health. take vitamin D + K2 and added more calcium through diet take B100 complex Magnesium celinium evening primrose vitamin e But it's getting harder every day when the medical world put up barriers and make thing hard for you.
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You are taking a lot of hormone, if you don't mind me saying so. How do you take it? Do you always take it on an empty stomach and wait at least an hour to eat or drink anything other than water? And at least four hours away from vit D and magnesium, and at least two hours for the rest?
Hi greygoose it wasn't easy I take all my thyroid meds during the early ours of the morning take a lot of other meds and it was impossible to keep food drink and my other meds away from the thyroid meds and I know T3 is best taken through out the day but it was impossible, I have a habit of waking about 5 6 oclock in the morning I get up take all T3 and Thyroxine with a large glass of water. since doing this my blood test have improved almost gone back to when I was taking 120 mg T3 my endo didn't like it as my TSH results went back to being suppressed -0.03 I had cut down my T3 over a period of 3 years and had put on 4 stone and was suffering lots of hypo symptoms. However I made stand on no more reducing T3 started taking T3 early mornings took up yoga and joined slimming world , within a year was feeling much better and lost 3 stone.
With your experience do you think I am taking too much I must admit I feel quite good at the moment but terrified having to fight to keep my health
What were your last thyroid test results including TSH, FT4 and FT3. If you are taking T3 then you need to review your FT3 result to find out whether you are on correct amount of hormone. If you post results here then people can give good advice. Remember to include the laboratory ranges.
Do you know if your FT3 result has always been within the laboratory range? As far as I know, having a low TSH does not make you lose weight. Mine has always been low due to the fact I take levothyroxine to help prevent thyroid cancer returning and I haven't lost weight. In fact many people treated for thyroid cancer have trouble keeping their weight down and they have a low TSH.
Have you asked the Rheumatologist to show you evidence that taking T3 causes bone problems when FT3 is in range? Could you show your historical results to the Rheumatologist showing that FT3 has always been within the lab range?
I have never taken any T3 and I have osteoporosis so there is no guarantee that stopping taking T3 will make any difference to your bones. In fact T3 might be protective of bones and it might be levothyroxine or reduced thyroid volume that causes bone problems rather than in range T3. Has anyone actually properly investigated it?
If FT3 is over the lab range then it can cause faster bone turnover as seen in people who are hyperthyroid but this is a different situation than someone who's FT3 is within the lab range.
More worrying is the amount of thyroid hormone you are needing to take to maintain your thyroid levels in range as it is a very large amount and suggests you have a problem with absorption that needs investigating. Your doctor will want to rule out conditions that could cause absorption problems. You need to ensure you are taking levothyroxine as per best instructions. The latest NHS advice is to avoid calcium rich foods for 4 hours after taking levothyroxine and that would include calcium supplements and any other supplements except for vitamin C which can actually aid absorption.
As your hip T-Score is less than 3.0 your doctor is clearly concerned about this as it's in the osteoporosis range rather than osteopenia,, so investigations into why you need to take such large amounts of thyroid hormone seem sensible.
Hi Nanaedake That is the first time I have been given the ranges, until recently I was unaware of how important the ranges are so asked for them which she got printed on the back of the letter she sent with a huff and a puff of course> I don't know why they keep saying that people use T3 to loose weight. What I say to them is that if you get the medications right then you exercise and diet healthily it is possible to loose weight not easy but possible I have struggled all my adult life with first Hyper for 25 years then Hypo for 25 years so I know how it feels to have too much hormone also too little and I am definitely not over medicated. the only strange and worrying symptom I have is that I am always too hot even in winter which is usually a Hyper problem. I just wish I could have a decent conversation with an endo, I have even been asked to leave as I have taken longer than the allotted time and as I was the last patient he wanted to go home.
I would get a copy of all your historical blood tests and ask for them to be provided along with the laboratory ranges. If your GP took bloods it will be easy as you can either ask receptionist for a print out or register to get results online through enhanced patient access if you live in England. You are entitled to a copy of your results.
Once you've got results, you could write to your Endo with the questions you want to ask since the appointment does not give you enough time.
I would ask your GP rather than the Endo to investigate absorption problems that could be preventing you from absorbing levothyroxine properly. These could range from pernicious anaemia, iron deficiency anaemia, gut dysfunction, coeliac disease or other conditions. Ask the GP to run full blood tests including:
TSH
FT3
FT4
Vitamin B12
Folate
Ferritin
Vitamin D
presumably you already have results of thyroid antibodies but if not then include tests for TPO, TgAb, TSI and TRAB. This will clarify whether you have Graves disease or Hashimotos thyroiditis.
If the doctor will not do all the tests then get them done through Medichecks or Blue Horizon which are online labs that many on this forum have been forced to use when NHS doctors will not run the proper tests that are needed.
When you've got all of these results, post them here and we might be able to help you work out what is going on and what else needs to be tested.
If you have Graves disease, it could be a cause of bone loss before surgery. However, it could simply be genetic tendency to osteoporosis or low eostrogen levels coupled with calcium insufficiency and low vitamin D if you're a woman beyond menopause.
My endo tells me I have hashimotos but when I asked for for an antibodies test she said there was no point . My GP 2 years ago told me he could not supply T3 any more because it was too expensive for him and that the NHS was not a bottomless pit. I went to the CCG who had not yet stopped GPS in this area from prescribing and after many e-mails to them they eventually said that my gp would still prescribe until such time as the CCG gave the directive not to. and that was two years ago. So I think my only choice is to do as you say and get these tests done myself . Why is it that the doctors give us such bum information is it lack of knowledge or pressure from the purse holders. either way we are the looser.
Thank you so much for all the help a guidance you are all doing a brilliant job.
I am a Nigerian with hypothyroidism and each time I get sent by my endo to carry out my Thyroid function test, I get all my results printed out for me and a copy sent via mail to my doctor (for my next day appointment). I can also log into the lab portal and check online. I don't understand why it is a problem to give you your test results. It is your entitlement.
As far as I know, it's the active ingredient that your thyroid takes in as a T4 synthetic or generic pill, usually Synthroid (synthetic) or Levothyroid (generic) and turns into T3, after sending it into the bloodstream and through the liver. They also make T3 pills which, obviously, don't need conversion. They are taken twice a day, usually, depending on your (body's) preference & provide you (most) with energy.
If you have been hyper for 25 years your bone problem's would have started then surely. Are you self medicating with T4? 250mg is considered an overdose by NHS so surprised they would issue that and 60 mg of T3. Why did they introduce T3? If it was because the T4 wasn't helping you then maybe you would be better of on T3 only, if not then they could issue T4 in liquid form. If you were hyperthyroid for a long time becoming hypothyroid you will never regain the energy and weight loss ease you once enjoyed. Feeling hot is a sign you are taking too much hormone. Remember hyper and hypo symptoms mirror each other so might be confusing. For me even 350 mg of T4 could not erase severe hypothyroid symptoms, but a dose of only 25 mg of T3 had got me on the road to recovery. We are all different with different needs a thing Endocrinologists and Doctors fail to accept. We can't all be put on the same box. Every Endocrinologist I have seen told me thyroxin can cause bone thinning but I am fine. It's being hyperthyroid that increases bone turnover. I know it's frustrating but try to stay calm if you ruffle their feathers they will label you a hyperthyroid even if you are not.
Hi Lulu2red Thanks for the info I was told by private endo who did lots of test that I was not converting Thyroxine so was give T3 as well as thyroxine although I have asked several times I cant seem to get a proper answer as to why both I think it's because thyroxine contains T4 I just find my GP's and endos so unhelpful and I'm sure it's down to cost.
T3 is not necessarily best taken throughout the day. Lot's of people take it all in one go. I take 68.75 mcg T3 and 25 mcg levo. I take it all when I get up, then wait an hour or so before eating and having a cup of tea. But, if you take your hormone with other supplements and medication, then you are going to compromise absorption, that is certain.
So, do you take it away from everything else, now? I really do wonder if all that levo is really necessary. FT4 is bound to be low when taking FT3, so perhaps you could cut back on that?
You may have managed to lose 3 stone with Slimming World, but it really isn't a healthy diet, because it's based on low/no-fat. The body needs fat, and going without for long periods can have serious consequences.
Just curious, but isn't the T4 level 4 times that of the T3 in NDT? Could you explain why it would not be that ratio when you take synthetic or generic pills?
No, I'm afraid I can't. There was a discussion on that not long ago, and many theories were put forward, but none of them seemed very plausible. And there's no explanation in any thyroid literature, so it probably hasn't been investigated. We just know that it is so.
You're right because every human being is different & what is "right for one is not right for the other." In the end, it all comes down to how one feels.
Hi greygoose I have asked many times why I have to take thyroxine if it's not being converted which is what a private endo told me after doing lots of tests years ago. I just get told its for background ? never had a proper answer I think it might be because it has T4 in it. I have told them I would prefer to cut down the thyroxine but none of the medics are interested in that they only want me to cut back on T3 If it wasnt for this site they may well have convinced me to do so but I know I would be in big trouble as I struggled when I first cut it back at their insistence that was until I found out from here that I needed to keep all other meds food vitamins away from thyroid meds and my pharmasist helped me do a plan for all my meds which helped a lot to get the thyroid meds working well.I do take all my thyroid meds away from food drink and other meds and vitamins usually about 6 in the morning then I go back to sleep for a couple of hours. I find it so hard to get any info from the medics as all they want to talk about is cutting down my T3 I'm sure it's cost . Possibly I come across as too cocky as I refuse to reduce T3 I have even given my endo a spread sheet of my blood test results over a 15 year period which proves that when I cut down on T3 I have worse hypo symptoms. I even tried to go to a different hospital for an endo but it made things worse it highlighted to my gp that I was taking T3 and that was when he threatened to stop supply. I could go back to the private endo who put me on T3 some 10 years ago but to what purpose I feel ok at the moment the only problem I have is the NHS doctors harrassing me to come of T3 I have given up asking them to do other blood test for me because they say its not necessary. All I do is get my endo to do the bloods T3 T4 & TSH give me the results and then she advises cutting down I say yes but it's keeping me healthy and off we go again she writes to my gp saying she has suggested I cut down and that I am not willing and that's the end till next year.
Sorry it's such a tirade but the pressure they are now putting me under when the Rheumatologist is threatening that he wont treat my while I am taking T3 and hasn't even done any vitamin D, Calcium, B12, or any other blood test.
Thyroxine doesn't have T4 init, it is T4. 'Background'. Hmm… Well, that's as good an explanation as I've heard. But, you have to understand that it's not so much that they don't want to answer your questions. The fact is they can't answer them because they don't know.
T4 is difficult ground to fight on, because nobody really know if getting converted to T3 is all it does. It could have some other jobs that we don't know about - some say yes, some say no, nobody knows for certain. But, it is true that the brain likes to have some T4 and convert it into T3 in situ. When I was on T3 only, I can't say that I noticed any difference brain-wise to when I was on T4+T3. Although, maybe other people did, but they didn't tell me! lol
Also, you may think you don't convert it, but you must have converted some, or you would have died. It just wasn't enough to make you completely well. I do think it's short-sighted of doctors to deny people the chance to try T3 only, it does suit a lot of people. Plus there's the fact that some people just can't tolerate T4 in any shape or form. I was like that. I converted perfectly well, I've discovered, looking at my early blood tests, but T4 just made me ill. NDT was even worse! But, I had to try them to know. Now, after several years on T3 only, I find that it's ok to take T4 with my T3. I don't know if I'm converting much, but it's OK and I feel… more rounded. So, 'background' does sum it up rather well for me. But, it took me a long time to get to that point.
However, when we're battling with ignorant, self-opinionated doctors, who think they know it all but can't answer a simple question without ridiculising themselves, it would appear that the only way to have the freedom to experiment with different hormone replacements and doses is to self-treat. Or, you could just stop taking the T4 and not tell them. It would show up on your next blood test, but you'd have to cross that bridge when you came to it.
Doctor! that would be the one that said he wasn't going to give me T3 anymore until I contacted the CCG? I thought Thyroxine had some T4 and some T3 in it is it really only T4 As I have said I really feel quite ok but feel I should be able to get these vital tests done in order to ensure good health I have asked for a B12 test which the endo agreed to but that wont happen for another year when I have my yearly blood test. It really is a fight to the death that is mine probably! I am thinking I will sneak in to the gp surgery and get one of the temp doctors to do the B12 Iron calcium and D and just say I'm feeling very tired and may be he will do it. I do think your right my endo is part time and when I try to engage with her in all things thyroid she does look quite sheepish perhaps it's ignorance and she obviously get arsy because she thinks I'm being cocky when I say I have read something she just sits there with a stupid grin on her face. Thank you so much for all the info
I did mean your GP should do those tests. Sorry, I should have specified.
Honestly, thyroxin is T4. It's another name for T4 - thyroxine, levothyroxine, often shortened to just levo, on here. T3 is liothyronine. And I don't think there is a combined T4/T3 pill available in the UK. Other countries, yes, but not the UK.
And, yes, I totally agree with you, you should be able to get these tests as a matter of course, and not have to fight tooth and nail to get proper treatment.
We can live without T4 - we cannot live without T3. Simple fact as it is T3 which is the ONLY active thyroid hormone. I cannot do without T3 now and just because Big Pharma has persuaded the world that T4 is the perfect replacement it doesn't mean that a section of Society recovers on it. We only used to have NDT which contains T4, T3,T2, T1 and calcitonin from animals' thyroid glands. We did not die a miserable death after NDT was introduced in 1892 up until Big pharma thought f a way to make profits. Many who take levo (T4) only may then have to have other prescriptions for their remaining symptoms as symptoms are unknown in the medical profession nowadays and we used to be diagnosed upon symptoms alone and given NDT.
T3 is being cost driven at present by the exhorbitant prices being charged to the NHS but it shouldn't mean patients be used as bouncing balls when their daily lives need T3 to function.
Thanks for that Shaws that's going in my 'what to say file' for when I write to these medics who are making my, otherwise fairly stable life, a missery
We mustn't be angry as that's what they've been taught nowadays, instead of clinical symptoms.
Just say you've been reading lots of research by people who are trying to resolve hypothyroid patient's unresolved clinical symptoms but so many 'modern' doctors wrongly have been taught that a TSH is the be all and end all of diagnosing/treating. Also say that the personal touch has been lost and that all hypo patients are treated identically when some recover on NDT which used to be freely prescribed, with T3 added to T4 - T3 now withdrawn and those who are well on levothyroxine will not be searching the internet but for those who still remain unwell but are given anti'd's or whatever else to keep them quiet and are told their symptoms are nothing to do with hypo as TSH is 'normal'. No FT4 and FT3 checked which should be in the upper part of the range and not below. People unable to function and unable to work or family life disturbed as the doctor tells relatives there's nothing wrong as blood tests are within range.
I take T3 only once daily when I get up. One of our deceased Advisers was an expert in the use of T3 and his patients - and himself - took one daily dose of T3 (his dose was 150mcg of T3 in the middle of the night - so that nothing interfered with the uptake of the Active Thyroid Hormone).
People who are resistant to Thyroid Hormones have to take larger doses of T3 to relieve them of the unpleasant clinical symptoms and at doses that might knock others off their feet.
Hi Shaws That's interesting I was on 120mg T3 + 250mg T4 it was the best I every felt was able to loose weight all hypo symptoms under control then they kept cutting it down and in 3 years of reducing it I put on 4 stone in weight depressed hypo symptoms returned. But I started going to yoga which gave me the mental strength to say to them no more cutting back I then started taking T3 in the early hours 5 o 6 oclock away from food drinks meds my pharmasist gave me this advice having got the best I could out of the thyroid meds and feeling stronger from yoga I joined a diet club and in one year I lost 3 stone. I have to say the information I am getting from everyone is so helpful and the way in which some people are dealing with the consultants is giving me lots of encouragement.
Our body is the best judge of whether or not we are on an optimum of thyroid hormones. Doctors are not. Blood tests are not. It is how the patient 'feels' on a particular dose which is always the best way and when we have relief of all symptoms that's optimum for us. T3 isn't best taken throughout the day. One daily dose of T3 is best, the reason being that it has to be absorbed into our T3 receptor cells to saturate them and after that it sends out 'waves' throughout the day. This was from one of our Advisers who was an expert in T3 especially in Thyroid Hormone Resistance. Which means patients who don't recover on T4 may need larger doses of T3 to saturate the reptor cells.
So true I felt good when I was taking more T3 but I was not getting the best from it because I was taking it during the day along with other meds and vitamins when I was forces to cut the dose I felt bad and put on a lot of weight, The the Pharmasist at my local chemist told me how to make the most of the dose I was getting it all in the early hours of the morning no other meds no food no drink only T3 T4 now this smaller dose is working so much better I regained some of my health enough to make other positive changes in my life.
But now I am having to fight to stay well and that is draining! but fight I will, after all it worked 2 years ago when I challenged my GP who refused to give it to me on the grounds his budget couldn't afford it.Then the CCG. conceded and instructed him to continued giving me T3
I'm saving all these bits of info I am getting from everyone to use when I have srite that letter. This on I have entitled BEST JUDGE OF HEALTH Many thanks to everyone
Hi Marz Thanks for your reply I have nerve damage in the nerves in the facet joins in my spine so I take Solpadol pain killers every day also sertralin for depression, lansoprasol for hiatus hernia, simvastatin, Then vitamins D, B complex 100, K2, Magnesium, E, Selinium, evening primrose oil
I don't think Statins should be prescribed if Hypo. Check your PIL - Patient Information leaflet. They do not benefit women either and do not prevent heart issues. Have you discovered Dr Malcolm Kendrick - he wrote - The Great Cholesterol Con - and has an excellent blog about what really causes heart disease ...
How much VitD are you taking and I doubt there will be enough B12 in a Complex. Both vitamins - if low - can be the cause of low mood. Also the Lansaprazole can prevent good uptake of nutrients from the stomach. We need acid to break down the acids. Am wondering if you have been able to try more natural products talked about here on the Forum.
I too have spinal damage and have had de-compression surgery - I self-inject B12 which is well documented as a pain reliever.
Hi Marz Thanks for the info I will check the statins and thanks for the Kendrick link will go and have a read
I take Fultium D 800 IU which is equivalent of 20 micrograms apparently
The B Vitamin complex contains
B 100mg of B 1 & B2
niacin 100mg
B6 100 mg
B12 100yg
folic acid 400yg
Lanzoprazole for hiatus hernia have tried to cut it down but pain high in stomach returns with avengence did think may be to take gaviscon but not sure it will control it.
I don't think Im short on B12 but I just think I should keep an eye on it,endo has agreed to test it next time
I didn't know B12 is a pain reliever thanks for that I could do with all the help I can get on that score
Left it a couple of days for you to have a read about statins - what did you think ?
I don't think there is enough B12 in the Complex and the PPI you are taking will inhibit uptake in the stomach.
The VitD dose is not enough for a fly - I take 5000 IU's and live in the sun ! I take 10,000 IU's in winter. Dosage should be based on your D3 result ...
Wow I think I need to read the cholesterol link a few more times I did stop them once but my level increased and was advised to resume. Very interesting b12 read 're pain I was told b vitamins work best in a complex they help each other when taken together where would you get such high doses of b12 ? Thank you so much for all the information
Yes all the B's do work well together - as you have mentioned - but there is rarely enough B12 in a complex and needs to be taken alone. Amazon sell Jarrow Methylcobalamin lozenges for under the tongue - 5000mcg and 1000mcg with next Day delivery ! As I mentioned before the PPI will affect the uptake of your B12. Are you aware that a B12 result under 500 can result in neurological symptoms and cognitive decline ?. Docs are failing patients very badly in this area and focus on drugs that make people even more ill - sadly.
VitD also available on Amazon - I use Healthy Origins 5000 IU's - as it contains olive oil and VitD is fat soluble. Also needs Magnesium and VitK2-MK7.
If you do have your B12 tested and the result is reasonable - then you must remember the amount of B12 in your complex will skew the result.
Thank you Marz am just about to order my vitamins which I get them from Amazon will try the B12 Lozenges 5000mcg to start with. Have a problem with dumping the ppi but am going to start reducing. Will also get the vit D already have the magnesium and K2 -MK7
Hopefully GP will do B12 blood test for me how long should stop taking the b vitamin before having the blood test please? I plan to carry on with the complex I have and then add the 5000 IU's that will make 5100 do you think this will be ok I wont be overdosing on 5100 ? I will get the blood test done hopefully within the next week.
Unfortunately it can take months rather than weeks to bring B12 back to base levels. So I would not stop the B Complex - just remember when you have the results that they will be skewed ! Excess B12 is excreted if not needed in the body. They are lozenges to be kept under the tongue until dissolved - avoiding stomach issues ...
Reducing the PPI sounds a good plan as they seem to have negative side effects long term. Lots of advice here about natural products to use instead ...
Bingo I did it this morning struck lucky actually got a B12 + feritin +folate+ vit d Cholesterol blood test done. Gp on duty was newbie and I managed to get her to agree to do the tests. will get the results by end of next week. thanks Marz will let you know the results.
Pop the results in a new post so more people see them and can comment. Don't forget the ranges 😊 Good work ! Lets hope the lab obliges - they seem a law unto themselves. VitD may take longer.
T3 can be used for depression and your doctor should have tested your FT4 and FT3 before prescribing antidepressants. They are happy to prescribe for a 'symptom' but not an overall dose of what makes the patient well. I am assuming simvastatin is for a higher cholesterol level? If so, when we are on an optimum dose of thyroid hormones cholesterol reduces - a higher cholesterol is another clinical symptom.
Thank you I am learning so much and I suppose that's what you have to do when you have thyroid problems
It sounds like this consultant is being difficault but it also sounds like you dont want his treatment. If that is the case then although he is treating you badly this might not be a battle it would be wise to choose to fight. If you do want him to treat you for something then be clear what you want and maybe ask to change doctors
To help your bones it would be good to take a combination of Vit D3 and K2. The K2 helps move calcium in your body into your bones. You need about 5000 iu of D3 to maintain a good vit D level. better 4 U do a good supplement for this. It would also help if you did some weight bearing exercise such a walking daily.
Your results are suprising as you are on a lot of thyroid medication but are still within range. This suggest you are not absorbing well for some reason.I think you can dissolve T3 under the tounge, this might help. You could reduce T4 a bit and even increase t3 but I think it is important to get to the bottom of aborbtion issues.
Are you taking any Iron or calcium?. Are you taking any antiacid medication? You might need a supplement to increase stomach acid. I have forgotten the name of it and will try to find out for you. Your absortion issue might be why your bones are suffering, you might not be absorbing the nurtrients your bones need.
You will also lack nutrician for the slimmers world diet. It is very low in fat and they do the most horrible beef burgers in the world. fat contains a lot of fat soluble vitamins. Slimmers world also encourage disorderred eating. You need to eat more normally.
Calorie counting can help you resume more normal eating and help you keep and eye on your intake. Have a look at a site like 'weight loss resources' and calculate your maintenance calories.People only need to eat a normal amount for themselves to lose weight or maintain a healthy weight. Undereating leads to short term weight loss and then regain.It does however once your eating pattern becomes disrupted become very hard to find your normal eating pattern again. A normal calorie intake can help with this.
Hi mandyjane Thanks for your reply your right in I don't think an infusion for my bones is sensible as I am having so much dental work at the moment but I have asked him what else we could do to support my bones, I am taking D3 +K2 and increasing calcium from my diet I cannot take Adcal it upsets my hiatus hernia but the dexa scan lady told me there are other things I can take to support the bones. I was gob smacked when he started ranting on about T3 he is obviously in bed with the endo.
The strange thing is I am not unwell I am controlling my weight and not totally without fat as I am maintaining. I feel the best I have for a long time. It's just this constant pressure from my endo and now her bed partner! I have given up asking for blood tests from the endo as she just says they are not necessary. so she dose T3 T4 TSH gives me the results, then says I should cut down T3 I say I don't want to as it is keeping me healthy, she then says ok , and writes to my gp saying she has recommended I cut down T3 but I reluctant then off we go for another year. but when it came to looking at my bone health, she seems to have seconded her bed partner. I just don't get it. I will ask for another Rhuematoligist trouble is I did this with the endo and made thing worse as this highlighted to my gp that I was taking T3 on his budget and he decided he was going to stop my T3 and I had to go to the CCg who after some discussion basically told him he had to provide it until our CCG issued a mandate advising all gps in this area not to prescribe T3. so I am now careful of jumping out of the frying pan into the fire.
Your Endo may not be aware that Lord Hunt is looking into the withdrawal of T3 from NHS patients.
We know the rise in cost was a great opportunity to remove T3 and that the NHS is being used to make profits by some companies but patients' health is the priority here and it is not our fault our bodies need T3 to recover from symptoms.
SO right I thought that now that there was 2 new pharmacies in the uk supplying that it would drive down the price instead they seem to have jumped on the band waggon Who in the NHS is responsible for sourcing medications time they did their job.
I did right to the monopolies commission a couple of years ago not that I got much response
Thanks shaws. I wasnt entirly sure. Mine disolve under tounge and taste nice but of course does not nesasaraliy mean that I am getting more benefit from them this way.
Hi, well at the hospital appt. this 'extra' clinic which actually had one man before me then over two spare hours until next appt.!! if waiting lists so long why didn't they move others to that clinic !
Anyway cutting to main points was asked if I knew why I was there ...'sort of' ... because your tablets are now So Expensive .... 'yes I've heard a bit about it'. 'but I'm Very Well - been on them for over 20 years....'. they may be stopped soon perhaps you could try T4 only ......' thank you I am Ver Well on this, it was not prescribed in first instance & took months, lots of blood tests eventually sorted a combination if 20mcg T3, 75mcg Levothyrox. I prefer to remain on T3 until it is banned then !'. told Drs. will soon be unable to prescribe it so am now getting it on hospital prescription until it's stopped completely. He said it's £1to buy in Greece, £10? in France !!! what is CCG by the way ? feel action will be needed by us all if NHS are being ripped off as it's apparently over £200 a month !
The CCG is Clinical Commissioning Group the governing body for each area in the Uk they are the decision makers and decide what medication will be provided and what will not. the same for medical services etc. which is why some people can get T3 and some can't it's all down to the various CCG's
Yep that would be right good job I can put it down to brain fog🤔
In France two x 30 tablets packets are 7.04 euros, why oh why is the NHS paying so much, no wonder the NHS is struggling. The cynomel is made in France.
• in reply to
Hi, can I ask, do you buy t3 from France? Would you mind messaging me with where you get it from please? Thank you😊
I was having the same Endo battle a while ago about reducing my T3 meds because Dexa Scan said I have osteopenia even though I felt fine, I have Psoriatic Arthritis also causes bone issues.
I did compromised a little bit because I just got tired of fighting with these clowns, I reduced my Synthyroid and left my T3 meds alone and they left me alone. I have no thyroid (cancer) I was suppose to have a very low TSH that tune changed as soon as they seen my Dexa Scan.
I read and article a while ago that said having too much thyroid hormones can cause weight gain just like having not enough hormones. I have no idea if this is true.
Our you allowed to try Armour Thyroid? I switched and feel good for first time in a long time and I take 2 pills vs. 5
I just wish I could have a decent sensible discussion with these people trouble is you only get 10 minutes and have in the passed been asked to leave because I have gone over the time allotted mainly because he was a new endo (saw a different one each time ) and to fill him in on my history of over 40 years of thyroid problems takes longer than 10 mins !!
I get a 20 minutes office visit and my 20 minutes usually get wasted when Doc ask me about things unrelated to my thyroid issues. I've had Endo tell me several months back to see a psychologist and take diet pills if I'm unhappy with my thyroid health...see you in a year..I fired him on the spot and I've cried more in 20 months then I have in 48 years because of these heartless doctors.
hi Canyouhearthat I was hoping someone would tell me it's just my doctors and that i'm just unlucky but it's as I suspect form what you say that the good ones are far and few between if any. I don't really understand it. I know if I were a doctor I would be in that job because I wanted to help people, what pleasure to they get from their jobs if a. they don't understand it or b. they are just bowing to financial pressures.!! It would appear that they are doing more harm than good. I would love to know if anybody has seen a private endo and what they say.
My Rheumys (I have 2) one Rheumy only deals with my Psoriatic Arthritis and is too far away to see more then 2-3xs a year my other Rheumy is local and if I hit crisis mode hes easier to get to...But at no time have either one mentioned my thyroid treatment and if they did I would tell them like I told my Dermatologist, I want you to only worry about my skin I have 2 Rheumys to worry about my bones and he agreed. But I have Psoriatic Arthritis and this causes osteopenia and osteoporosis and Both Rheumy get this, but I no longer take Cytomel (t3) or Synthyroid I now take Armour Thyroid.
How many medications do to you take per day for all your health conditions? I Take 4 pills now from 7 pills and regained my sanity.
Thanks good point I will use that one when I next see the Rheumy I was so taken back when he started talking about T3 but my endo had referred me to him but I still wanted to say it's not your business to instruct me on T3 but you put it so aptly actual medicines 6 plus 6 vitamins/minerals. Thanks for your help I'm compiling all this info that I'm getting from everyone it's giving me lots of ammo
Hi again had a quick google first one said he was a osteopath next one Turoid expert the weigh loss expert not sure about this one will have a closer look thanks for the info
Put all that heartache behind you now as we, on the forum, with all of the expertise of what not to do, can recover our health with the help/advice of others who've gone through the same experiences with doctors.
I agree with everyone who suggested that you have an absorption problem. None of your doctors is on the ball about this. What you need is a referral to a gastroenterologist. Breath test for H. pylori and endoscopy, biopsy to see if you've got something adverse going on.
Gaining weight means nothing because sugars are easily absorbed. And people with chronic malnourishment due to absorption problems tend to overeat foods that they are able to digest. These are usually easily fermentable carbohydrates.
Wow, What a nightmare! I thought the US healthcare system was screwed up, but it sounds like the NHS is pretty much indifferent to your individual needs. I have had thyroid issues for 35 years, starting with Graves disease, had thyroid removed and have had to fight with doctors about my meds, my lab results, etc., but always have the option of going to another doctor at least. I’m on T3 only now, and it costs $40 for a one month supply of 25 mcg tablets. My dose is 50 mcg per day. They are very soft and dissolve under your tongue so you don't have to worry about absorption issues. Before I switched to t3 I was on NDT (natural dessicated thyroid), which is also pretty affordable here in the States, and is a 3:1 mix of t4 and t3. Since I have no thyroid gland I had a hard time with taking NDT, as I apparently also have Hashimoto’s and my lab results would bounce all over the place as my conversion rate kept changing. But for most people NDT works great. I bought 1000 grains of it from a pharmacy in Thailand for about $60 WITHOUT A PRESCRIPTION online. It can also be dissolved under the tongue although a bit more difficult because it has a coating. I definitely agree that you need some fat in your diet. The one thing that has been consistent for me over the years is that the more carbs I eat, the more hypothyroid I become! Stick with high fat, moderate protein, low carb ketogenic diet.
Hi Helenca Thanks for your reply I don't know how half these medics can justify their existence or how they sleep at night when so many people rely on them. thanks for the tips.
I have now moved back to the UK so can no longer buy it, sorry.
I can only say it seems current conventional medical people have been instructed to cut costs no matter what and they are using every trick in the book to stop people having T3 because the NHS have not got their arses into gear and put a stop to being ripped off by drug company Concordia. It beggars belief and no wonder the NHS is on its knees.
On a different subject but something you mention. Extra calcium supplement. I have just read several times an excellent book on 'The Calcium Lie II' by Robert Thompson and Kathleen Barnes. Almost everyone believes that bones need calcium and the more the better but this is a lie. Robert Thompson explains this in his book and exposes how we have all been fed lies about Calcium being the only thing necessary for our bones. Bones are not made of 'just' calcium, they are made up of at least 16 other minerals and all are necessary for strong bones. This sets up a mineral imbalance and causes calcium to start lodging in soft tissues regardless if you take K2, the brain and other places you don't want it. He says there are only 10% of people who are truly low in calcium. The other 90% have far too much already and it throws out the rest of the minerals causing many medical problems which the drug companies make lots of cash from. Please have a read of this anyone who is on calcium supplements. (Download a free sample if you have an E reader?) I bought the whole book and it has taught me so much, I shall be buying several copies to give as gifts - (Robert Thompson exposes the lies we have all been told and continue to be told about many other things like salt and fats that are detrimental to our health, its a great book and has changed my health for the better already, lots of info about thyroid issues too).
Hi Furface Thanks for your reply I am not taking calcium tablets just including more in my diet and thanks for the info about the book will go and investigate that. I cannot believe that the medics who should be intelligent (god I wish this sit had spell check) people can be so devious what ever happened to the FIRST DO NO HARM mantra the medics are supposed to subscribe to. And yes the NHS administration should sort out the supply its £ cheaper in Europe
Google “can liothyronine or Cytomel cause gum problems”. You say you are having dental problems. I recently have stopped taking t3 because my gums and teeth became very sore. When I googled the question I was shocked. My doctor and dentist were also and I am now under treatment for gum disease. A lab test showed no bacterial infection. I have always had excellent oral health and I immediately improved when I discontinued the t3. This is never mentioned as a side effect of taking a t3 supplement. I do not have quite as much energy now but I still have my teeth!!
What kind of dental problems? Gum disease? This is the first I have heard about this. Would you send me a link to any dental problems suffered by ingesting T3? And, would it be from ingesting it, as opposed to swallowing it whole with water?
I don't know how you established your dose, but 250mcg T4 plus 60mcg T3 is a lot. You should make sure your FT3 and FT4 are within the normal range for each. If they are, the rheumatologist has no business refusing to treat you. Unfortunately there are many, many docs who are ignorant about T3 and repeat that sort of lie.
There is an article on thyroiduk.org, a metastudy (based on other studies), which says that low TSH does not cause ill effects until TSH<0.04. You might try to get your TSH up slightly.
Have you considered that since you are on a pretty high dose of thyroid hormones, that you might be resistant? Try to look for materials on the subject of thyroid resistance. Have you had your TPO and TG antibodies checked? That is CRUCIAL! If you have Hashimoto's and could get rid of it, you would probably find that your your treatment would be more effective at a lower dose.
BTW gut problems (manifested as mal-absorption and Hashimoto's) could be underlying your issues. I had both mal-absorption and Hashimoto's, which both went away after removing gluten from my diet. (Gluten is my kryptonite.)
Thanks for replying How do you get rid of Hashimotos?
Actually I feel quite good on the present meds and they are all in range it's just the stupid doctors who wont accept that I am ok quite happy on the dose providing I am not having any other issues the osteoporosis is probably down to my age and genetics
I did ask for antibodies test but endo said you don't need that we know you have hashimotos Thanks for the reading ref trouble is the more I know the more I think I must come across as a know all and that doesn't help. The reason I was put on this dose is because a private endo some years ago did lots of tests and said I didn't convert properly and actually prescribed twice the amount of T3 120mg since then I have gradually been reducing
The only remedy most endos know for Hashi's, is to administer thyroid hormone to take stress off the thyroid. But some people (I am one of them) have found that dietary factors lead to disorders of the gut, which triggers Hashi's. Izabella Wentz (thyroidpharmacist.com) has written books and runs internet seminars on this sort of thing. BTW are you using a trace mineral supplement that includes selenium? Selenium supports the conversion enzymes.
Just wanted to add anti depressants cause weight gain. Being hypothyroid or hyperthyroid can make you anxious
Although years of T4 only made no difference,3 days on T3 only my mood lifted. If you have proof you cannot convert i.e. DIO2 problem get yourself tested. You don't need T4 at all
In fact it could be making things worse. Just my opinion of course, you know your own body better than them. I do know a lot about mental health and almost all anti depressants and psychotic meds cause weight gain as they subdue thyroid action. There are a few that don't but really expensive. Same old story. More worrying is they cause diabetes after a while if you can manage without or wean yourself off all the better. For me on T 3 only depression went in 3 days. I feel like T4 is poisen for me, but I want to acknowledge it works for many people. In my own mind if various doses of T4 show no improvement you should try T3 only. Anxiety and depression for me were worse on T4 but that is because I might as well be swallowing a placebo. Wish you well.
it is well known that the risk of Atrial Fibrillation and Osteoporosis is minimal but the risk rises as a patient moves into thyrotoxicity. However, a properly titrated patient is not thyrotoxic and therefore there should be no increase in the risk of osteoporosis. Therefore the rheumatologist should treat you.
The recent case of Mongomery v Lanarkshire said that a doctor is negligent if s/he does not explain ALL the options available and the risks with those options, in line with the General Medical Council's guidance Consent: patients and doctors making decisions together. part of which is reproduced below
Sharing information and discussing treatment options
The exchange of information between doctor and patient is central to good decision-making. How much information you share with patients will vary, depending on their individual circumstances. You should tailor your approach to discussions with patients according to:
their needs, wishes and priorities
their level of knowledge about, and understanding of, their condition, prognosis and the treatment options
the nature of their condition
the complexity of the treatment, and
the nature and level of risk associated with the investigation or treatment.
You should not make assumptions about:
the information a patient might want or need
the clinical or other factors a patient might consider significant, or
a patient’s level of knowledge or understanding of what is proposed.
You must give patients the information they want or need about:
the diagnosis and prognosis
any uncertainties about the diagnosis or prognosis, including options for further investigations
options for treating or managing the condition, including the option not to treat
the purpose of any proposed investigation or treatment and what it will involve
the potential benefits, risks and burdens, and the likelihood of success, for each option; this should include information, if available, about whether the benefits or risks are affected by which organisation or doctor is chosen to provide care
whether a proposed investigation or treatment is part of a research programme or is an innovative treatment designed specifically for their benefit4
the people who will be mainly responsible for and involved in their care, what their roles are, and to what extent students may be involved
their right to refuse to take part in teaching or research
their right to seek a second opinion
any bills they will have to pay
any conflicts of interest that you, or your organisation, may have
any treatments that you believe have greater potential benefit for the patient than those you or your organisation can offer.
You should explore these matters with patients, listen to their concerns, ask for and respect their views, and encourage them to ask questions.
You should check whether patients have understood the information they have been given, and whether or not they would like more information before making a decision. You must make it clear that they can change their mind about a decision.
Answering questions
You must answer patients’ questions honestly and, as far as practical, answer as fully as they wish.
if I was in your situation I would make a formal complaint about the conduct of the rheumatologist. S/he is not giving you an adequate explanation of why s/he is refusing to treat you. The real reason is to ensure that the T3 is not causing osteoporosis and the best way to find that out is by the relevant bone tests. it is not to reduce the dose that you feel good on.
Hi holyshedballs Thanks for all the information. "a properly titrated patient is not thyrotoxic " excuse my ignorance but does this mean a person medicated correctly shows no symptoms ie Thyroid levels within the range ?
Thanks for the quote on what a good doctor should provide, I have a feeling I am going to need this. I have tried going to different ones but they are all the same blind stupid and uncoperative. It is sad to have to say that although I feel good on the medications, my stress levels are going through the roof having to keep fighting for what keeps me healthy. I understand that taking any medications means regular checks on certain levels of things that might have be effected is sensible but even when I get them to do the tests they should be doing I don't always get the results in writing or get told it's normal!!! The only person looking after my health is me and the only persons stopping me are the doctors.
sorry rant over for now and thanks again for the ammunition.
To me, if you are taking a dose (titration) of T4, T4/T3, T3 or NDT, there are 2 things to take into account
1) do you feel well and are your signs and symptoms reduced
2) do you have any signs or symptoms of thyrotoxicosis (thyroid poisoning) i.e. too much thyroid hormone.
If you have 1 and not 2 then your dose is good, even if the various levels are outside of the reference ranges. BUT a patient must not be blase about straying outside the reference ranges and must do a lot of monitoring.
This is because the risk of Atrial Fibrillation and/or Osteoporosis is real but only if you are thyrotoxic.
(Even then, the risk is minimal compared to the other risk factors for both AF and O).
That is what I mean by a properly titrated patient - a dose that reduces symptoms but does not cause thyrotoxicosis.
All this was debated 11 years ago at Dr Skinner's Fitness to Practice hearing in 2007. Its amazing that it is still a live issue now with most doctors.
In these circumstances a doctor does not have any excuse to reduce your dose or stop your dose. In fact, if reducing or stopping your dose make you feel worse, the doctor should not reduce your dose or stop you from taking the medicine at all. The first duty of a doctor, According to Good Medical Practice is - "Make the care of your patient your first concern".
it is interesting to note that "acting in your patients best interests" is not in Good Medical Practice, presumably because of the impact of the Mental Capacity Act, 2005. The Act states that people are presumed to have the mental capacity to make their own decisions, even what others may consider them to be bad ones. People can only act in another persons best interests only if they have failed the tests for Mental Capacity. Therefore, unless a person does NOT have Mental Capacity, a doctor cannot act in a patients best interests, in my view.
The case law I posted says that a doctor must discuss the various options and their benefits and risks with their patient. Patients must be assumed to have mental capacity to make decisions for themselves, unless they fail the test for mental capacity. This then means that patients can make their own decisions about risks. This goes against most doctors instincts who say " I will put you patients on X mg dose".
In law, a patient should be able say to a doctor,
"Thank you for explaining all the options and the risks of taking thyroid hormones. I understand what you have said and have done my own research as I have told you. I choose to take 125mcg of T4 per day (or what ever it is).
I don't believe I am at risk of AF or O and therefore I am willing to balance the small to negligible risk of AF or O against the vast actual improvement in my health for the rest of my life. I know what the signs and symptoms of thyrotoxicosis are and I will monitor my self for those signs and symptoms. I have the mental capacity to make this decision.
Please prescribe 125mcg of T4 per day (or what ever it is).
You cannot act in my best interests to deny this medication unless you have declared that I lack the mental capacity to make this decision.
i was being refused bone monitoring i would tel l the doctor that he no good reason to stop the monitoring and was acting against Good Medical Practice. the point of bone monitoring is to monitor the effects of your T3 so that you don't suffer the effects of too much T3. It is also not logical to demand that you stop T3, therefore such a demand is negligent
Thank you so much and you put it so well. But when it boils down to it that is what I have been doing for the last 5 years telling them I need this amount to stay healthy, telling them I have been hypo and would recognise the signs of too much hormone I in my body, I do not have heart palpitations or shaky hands or bulging eyes or feel jittery, I can loose weight if I excersise and diet and that I understand the risks I am taking and this over the last few years has admittedly got me my T4 even if they insist on putting in writing to cover themselves that they have advised me to cut down and that I am resisting. I suppose the admin Finance part of the hospital may well be putting pressure on the consultant to get me to drop it and this is there only say they can justify it. Trouble is now other consultants seem to be joining the band wagon in trying to persuade me. However thanks to the people on this site I am getting armed and dangerous. thank you for all the ammo
Well, if I were in your position I would write a formal letter outlining the above and stating that in no way do you want to reduce or stop your dose of T3. Even the BTA say that those who have a clinical need for T3 should stay on it.
Then I would finish off that letter by saying that if I receive any further suggestions that the doctor reduces or stops my T3 I will be making a formal complaint on the basis that
1) the doctor is not complying with Good Medical Practice by not making the care of his patient (me) his/her first concern and
2) not working with me according to Consent: patients and doctors making decisions together.
Thank you so much, it's sometime hard to find the words when faced with these situations so this ones going in my "what to say file " And your so right of course a letter saves getting into heated discussions.
Why do people who have absolutely no knowledge about T3 and they would never be able to do their jobs if they had no T3 in their bodies. After all it is T3 which runs everything in it, particularly heart and brain. It also doesn't affect or bones, in fact due to taking T3 and we feel much better and are able to exercise to optimum when on the correct dose.
Levothyroxine is an inactive hormone i.e. T4. Liothyronine is the Active thyroid hormone and makes us feel well when T4 doesn't. It enhances our health as our thyroid gland can no longer produc T3. Levothyroxine converts to T3.
Thank you SlowDragon i have just put the results of my blood test on line in a seperate post and the B12 is high probably due to supliments I take I don't have any reflux or digestion problems I was given Lansoprazole for a hiatus hernia and mostly it keeps that under control I don't have any sensitivities to foods or bloating I have read the links you sent thank you. and was considering trying to reduce the lansoprazole but was worried about reaction to stopping it. The blood test I hope shows that there is no problem with absorbing the vitamins a minerals I take. i am very grateful for all the advice.
I did ask my endo for antibodies test but she said it was not necessary as I was a classic case of Hashimoto's from age 19 to early 40's was hyper then next 25 years hypo Which is why I have always said I would know if I was having symptoms of over medicated with T3. I was on 120mg of T3 but NHS made me cut down over a period of 4 years I gained 3 stone. I was then told by my pharmasist how to optimise my meds to get the best out of them, ie away from food drink and other meds which I did at the same time I took up yoga got my head in the right place and started dieting. lost 3 stone in a year. I have no idea why they are happy to keep me on so much T4 as I was tested and do not convert T4 to T3. I had an endoscopy which verified the hiatus hernia which does not give me too much trouble. As I now have osteoporosis and have to include more calcium in my diet (stomach cannot tolerate ADCAL ) so take D3 ,I find it a struggle as I am trying to loose some more weight as still very much overweight, however I eat natural foods mostly and will make an effort to cut the gluten. Thank you again for all the links and help.
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