Dr Renee's Vlog - Hypothyroidism and T3/T4 Campaigns

[lynmynott]

I had a long chat with Dr Renee and she very graciously agreed to do a vlog on hypothyroidism and the current problems with T3.

I think she has done an amazing job!

youtube.com/watch?v=QJqWKwI...(Not working as expected?)

[Clutter]

Lyn,

Snap! healthunlocked.com/thyroidu...

[lynmynott Partner Thyroid UK in reply to Clutter]

Blast! I did a search as well and the only thing that came up was your post about her article in the Express!

[Clutter in reply to lynmynott]

No matter, you can't have too much of a good thing

[lynmynott Partner Thyroid UK]

[jeanjeannie50]

Absolutely brilliant and full of information for those of us who have just been diagnosed as hypothyroid. Thank you for posting.

[Hidden]

Brilliant thank you. It's good to know that we are on the right track.

[greenfoot1]

Inspiring video. Makes you feel that some of our GPs know what they are talking about.

[JudithW]

There was one area Dr Renee did not cover. Reverse T3 mind the more I read about it the more confused I am getting. I do not have Primary Hypothyroidism, all my TSH and T4 have been normal limits 1st TSH was a smidgin elevated 4.08 . T4 helped me get rid of hoarse voice and the intermittent tears, tiredness improved. 'I still did not feel well Dr.' Private tests later it seems the T3 and rT3 ratio are wrong. T3 has changed my life. Like Dr Renee said and I am scared as well. Must comment the video was excellent. As greenfoot1 said it does restore a little faith in Dr.s

[lynmynott Partner Thyroid UK in reply to JudithW]

Dr Renee is planning a vlog on hyperthyroidism within the next couple of weeks so it's feasible she will do one on rT3 too.

[JudithW in reply to lynmynott]

Thanks Lynn, it seems to be the ratio rT3 to T3 which is the problem

[jimjim]

This video made me both shout for joy and slump into a crying mess. I am not sure I should write what I want to, because I believe my endocrinologist somehow sees what is said and might hold it against me, but feel I have to at least put this in writing before the Brain Fog envelops me.

My personal experience is a long journey over several years, but I am hopelessly ill without a mix of T4 & T3 following RAI treatment which has effectively killed my active Thyroid. Previously our top Consultant would not even hear of me trying T3, never believed in it and still doesn't. I was lucky that 4 years ago a second Consultant I managed to see accepted my reasoned request for trying added T3. My 'knowledge' was gained from thorough research on line and following advice and suggestions from this very website (thank you Admins and fellow members!) At that time I was sleeping all the time but still feeling exhausted. The 'Brain Fog' was my biggest fear and so very debilitating. I run a business, help in two different volunteering groups, have a family to care for and am generally a very busy person. I have no desire to give up on any of these things!

All was well until I was sent for a review back with the original 'Head Consultant', now our ONLY Consultant since the 'understanding' chap has now gone. For the last couple of years I have been taking daily 75xT4 & 30xT3 but I am now being forced to give up having T3 altogether - because....QUOTE:...." there is 'no evidence' to say it does anything better than T4, it costs TOO MUCH and I won't be able to get it anyway because the local health governing body has said I cannot have it. (DO YOU REALISE IT IS ALMOST £10 PER TABLET?)

He was absolutely horrified to discover my medication regime and said it was ridiculous. In his view it's also as bad as 'cocaine' and "without being cruel", I am just like a drug addict. I will demand more and more of something that might make me feel better but ultimately will make me become even more ill, more dependent and probably cause me to fall and break my bones very soon and become a burden. The people who say otherwise are just ill informed and unqualified AND JUST PLAIN WRONG!"

He is the ONLY Consultant, so no alternative choice for me. I have to suck it up and expect to feel really ill again. A daunting prospect. My TSH is too low to count, (has been so all along, whatever my medication!) and apparently - unless I accept to reduce my T3 I will always be ill. His view is that my TSH MUST start to rise otherwise my own brain is telling me and the world that I am being over medicated - all the evidence tells us this, and the aim is to get my TSH to rise, whether I feel well or not is irrelevant apparently. Once the TSH is properly regulated, I will undoubtedly be better and I should accept that. (!)

Latest Blood results for me on my current medication:

TSH 0.08 [0.30-5.00] FT4 9.0 [7.0 - 20.0] no test for T3 -these are the only tests they 'allow'!

It is so complicated. Because HE is the experienced QUALIFIED professional, and I am just a lowly patient I must accept his ruling. I am already in despair and so frightened about how ill I am going to get with the brain fog and exhaustion, but have nowhere to turn to. He will no doubt say that if I do get worse, it's all in my mind and I am imagining the worst because that is what I am expecting to happen. I would like to fight this, but not sure how able I am when faced with such a highly respected Consultant who is adamant that anyone who believes T3 is useful is just plain wrong!

It is difficult because I appreciate that he is probably a really good doctor, and that he may be right, but I don't think on this subject he is. I would love to know how 'current' is his knowledge and training - specifically in Thyroid medicine - he is certainly well respected for his Diabetes & Arthritis work.

He said there are World Wide studies which totally deny any value in supplementing T3 for T4, apart from something like 3% of the WORLD population who *might* feel some benefit, but it's all in the mind and not factually provable. He said most of the time one could give a placebo and get the same effect so that's how they know. (Not sure about what he meant on this one, but after nearly half an hour of him telling me why I was so wrong about insisting that T3 was my saviour, I was already throwing in the towel!)

I had about 30 minutes of explanation to back this up with him pointing out how right he was and that I am not qualified to understand it properly, so need to just agree and start to reduce my T3 and change to T4 ONLY. End of.

To ensure I am 'happy' to accept this he is 'willing' to allow me to do the medication change over a period of a few months, so I am 'grateful' at least for this! (?)

Other than having the lovely Doctor Renee accompany me to my next revue, there is nothing much more I can do is there?

Feeling so let down and helpless now. I am not comfortable 'complaining' about him, as I do firmly believe he is sure of his opinion, although I also think his judgement is coloured by the 'cost' implications so the pressure is on to get all these daft women (like me!) off from such an expensive drug (not cocaine obviously!) and onto 'normal' medications, whatever the effect on our health. He is convinced I will suffer from a bad heart or broken bones because he said I am seriously over medicated with such a low TSH - his full opinion and he is the qualified person.

Sorry it's so long, and I realise nobody can really help. It's just good to share this with people who might understand. Any helpful suggestions gratefully received! x

[Hidden in reply to jimjim]

Hi. I'm so sad reading this. My immediate thought to his statement rd the studies was "perhaps you are the 3%"! I know i am. I also know that if my T3 was stopped it wouldn't just be how I felt that changed but how I looked. I immediately get swollen and puffy and frankly unrecognisable.

Could you not ask Your GP for a referral to a different hospital for a second opinion? I believe that is your right.

Good luck. Renée

[jimjim in reply to Hidden]

Thank you for responding - I could try I suppose, but I live on an Island and it's hard enough to get ANY endo appointment at all! He is really very set on his views that T3 is totally unnecessary, that it's all in my head and that it will harm me long term. If T3 has been/is being blacklisted as he believes, then I assume this will eventually be the fate for us all. As I understand it, the GP is 'not allowed' to prescribe T3 anyway unless authorised by the consultant, and he is writing to tell them how I am to be treated over the next few months. Depressing!

[shaws Administrator in reply to jimjim]

It would serve these doctors right to experience hypothyroidism and be refused medication and experience all of the effects of hypothyroidism.

I would source my own T3 and to hang with becoming unwell again.

It seems you have two options, either go along with his 'headstrong' views or source your own T3 and be well.

Read Dr Renee's Vlog on the right-hand side column which is self-explanatory.

[Baggiebod in reply to jimjim]

This is dreadful but sadly all too common a story as many, many hypothyroid patients need T3 but the NHS doesn't sanction it due to the cost. Maybe if we prioritised British tax payers over health tourists and refugees etc we could afford to treat hypothyroid patients with the medication they need

[Hidden]

jimjim life's too short to deal with numpties like that so you need to take your health into your own hands. After all, why would anyone do something to please their doctor but leaves them ill?

[jimjim]

Don't have a choice cinnamon girl! They hold the power - I can only get meds through them - wouldn't risk buying privately even if I could afford it as you just don't know what you are getting. If I knew there was someone else I could ask to be referred to I would, but am stuck with him! I also think that there will be a mass push to restrict any of us getting T3 over the next few months anyway, so won't be alone!

[Hidden in reply to jimjim]

jimjim with respect many of us on here buy our own meds from trusted suppliers as we want a life, something that the NHS was failing to give us. It sounds daunting but it really isn't, there's plenty of knowledge on here and people are happy to share experiences. Shout if you have any questions.

[helvella Administrator Thyroid UK in reply to jimjim]

For some, the risks of buying on-line or privately (with due care and caution) might well be lower than the risks of remaining inadequately or inappropriately treated - or not treated at all.

In my opinion, randomly choosing a supplier of medicines like viagra is indeed dangerous. Carefully choosing a supplier of a medicine to which many are so sensitive is much safer. After all, when people notice batch to batch differences of products supplied through standard channels, they certainly are not going to have the wool pulled over their eyes if some on-line supplier actually gives them rubbish.

Those with much experience are likely to be the first to try new suppliers and will have experience packaging, batch numbers, etc., to help ensure that whatever they receive is good. Followed by actually taking it.

We are in an utterly ridiculous situation when even NHS medics are suggesting buying medicines on-line.

[shaws Administrator in reply to jimjim]

If I don't have T3 - I will be dead in a few months. I cannot take T4 (levothyroxine) at all as it caused me immense illhealth but doctors cannot see that.

I have saved the NHS an immense amount of money as I no longer have to call ambulances, nor visit the cardiac dept etc, etc, where the Cardiologist was flummoxed. Only our families get to see how really unwell we are.

It was when I went onto T3 that all symptoms disappeared and it seemed as if my flesh absorbed oxygen and I felt well for the first time in many years, having remained undiagnosed with hypo for a long time.

Never mind that I was diagnosed with umpteen other 'problems' and had treatment for them and the symptoms I was having, but which were due to hypo.

Your doctor is set in his ways and spouts the BTA's guidelines but the aim of being a doctor is to 'heal' the patient, not try to frighten the life out of him with 'old wives' tales, of osteo or heart problems. My heart has calmed right down with T3, whereas with T4 it was out of control.

There are so many researchers who have proven that many need the addition of T3 added to T4 and your Consultant is not a researcher but is dogmatic and set in his ways, which really is of no use to his patients who remain unwell and fearful.

I bet he is completely unaware of a condition called 'Thyroid Hormone Resistance' which is the case that someone cannot convert T4 to T3 at all, so has to take T3 only and at very high doses which would probably knock someone else for six. They recover their health.

[jimjim in reply to shaws]

I have been giving this all so much more thought - and it occurs to me that we KNOW that Labs often refuse to do T3 testing at all, even when requested to do them, and so the levels of T3 are very rarely even recorded. In which case - NOBODY knows how many people have insufficient T3 levels, (let alone the other 't's !) so how can the medical profession ever understand the needs of patients? The whole Thyroid medical discipline is obviously underfunded both from research and treatment viewpoints and until it is properly investigated I believe many more will suffer the side effects!

How many are labelled with 'depression', 'MS', or the latest common affliction 'Fibro' when in fact if their Thyroid levels were regulated enough to make them feel well and their B12 & Vitamin D was properly supplemented - they might suddenly find they can function almost normally again! Who knows? But I would hazard a guess that if this were to be thoroughly explored it may ultimately save the NHS millions and relieve the Social Care budget from having to support many disabled people and give them some kind of a life beyond a wheelchair!

Don't misunderstand me - I have huge sympathy for all those afflicted - I just firmly believe a lot of people #might# benefit from better investigations, testing and trials of T3 & T4.

I should also add my view that ........IF medics are so concerned that my having T3 (which has made a huge difference to the way I feel when added to T4) is so detrimental to my health in terms of damaging my heart and bones - WHY do they not at least take proper note of my current Heart and Bone health. So far nothing has been tested or recored on either of these things. Surely if they are anticipating heart and bone problems, they should know if they are already damaged? I am hopefully assuming they are fine right now, although nobody has said as such and I have never had any particular scans on them!

I really believe it is ALL down to COST - after all - "the tablets are about £10 EACH do you know, which is quite ridiculous especially as they do you NO GOOD AT ALL and are just like COCAINE - the more you have the more you will demand"? (Quote from my consultation!)

Am still trying to process the whole situation, but thought since you have commented I would add an update!

Sending love to all you fellow sufferers out there! At least if we do get together and fight to make the drug CHEAPER, we might get more satisfaction in due course?

[JudithW in reply to jimjim]

Concordia the manufacturers of T3 are being taken to court with regard to the huge increase in T3 price. They are trying to maintain that they have done a lot of research into it etc etc. The NHS survey may have contributed to raising awareness of the price in comparison to other European countries. Any one know if the results of the survey are out? I might ask NHS England and see.

[jimjim]

I appreciate the responses - thank you all! My worry is - over the next few months there will be a huge number of people being denied what we have previously found works well enough, resulting in possibly more 'anti-depressants' being used or just lots of us becoming zombies!

Faced with a consultant in power who really does believe T3 is 'dangerous and NOT the answer' because ultimately it is doing more harm than good - and I think he's not alone - it is very difficult to go against his 'respected' instructions.

We live in fear now, of being denied GP services = if we go against medical advice we risk being removed from the list - we don't have an alternative so are obliged to 'follow the instructions' and accept that they know best.

The whole thing is so tiring - I feel like I have fought to get this far over several years, but now am back where I started. I would be up for approaching my MP for support but not sure how this will help if we are trying to fight against 'recognised endorsed advice' from Health Bodies in the UK.

What options do we have? Is there a list of GP's or Consultants who DO recognise the benefits of T3 willing to go against the national guidance? Is there a set of printed material I can access to help me argue with my respected consultant?

[julijkb]

This video has come at a great time for us. My daughter has been on T4 for three years and still feels unwell. Managed to persuade her GP to do the T3 test, even though he didn't know it existed, and her levels are through the floor. Consultation tomorrow. How do they work out the T3 levels needed as research shows they reduce the T4, which isnt helpful.

Juli

[shaws Administrator in reply to julijkb]

T4 is inactive and it has to convert to T3. If T3 is added the T4 may seem lower but the fact that the Active T3 which has been added goes directly into the receptor cells as it doesn't need conversion.

However, the blood test were invented for levothyroxine alone, i.e. T4. so if we add in another thyroid hormone it cannot possibly correlate with a test which is for one hormone alone.

[Summer64]

Great video. I'm now really suffering having been taken off the T3 for just a few days. I will be writing to NHS England as, like Dr Renee says, we will end up costing the NHS more in the long run without it.

[penny]

I have just come across some test results from 2006 and 2007 when my GP insisted that I was not hypothyroid; indeed, he cancelled my T3 prescription as he said that I had never been diagnosed. There are no reference ranges: T3 - 0.02 then 0.01; T4 - 21.0 then 27.0. I almost cried. I was obviously very unwell and yet I was told that I was not hypothyroid. In 2010 my T4 was 33.5 but no T3 tests done after 2007. My husband asked me why I did not make a fuss - my brain did not work properly for decades so I would not have known that there was something wrong. Oh, those wasted years.