T3/T4 Combination Therapy

Please post your hypothyroidism questions here for our experts to answer.

Moderator: talkhealth

Locked
16 posts
Surburbian
Posts: 7
Joined: Thu Jan 19, 2012 4:09 pm
Quote

by Surburbian on Thu Jan 19, 2012 5:06 pm

T3/T4 Combination Therapy

Hello

I was dx as being hypothyroid in 1993 whilst living abroad. I was started on T4 but after trying different doses over a period of time my symptoms were not improving so my doctor decided to try me on T3. The results were quite astonishing and I was told I was thyroid resistant. This had no meaning to me until I returned to live in this country some years later.
Initially my eminent Endo specialist in London was willing to continue prescribing me T3 but then his attitude seemed to change and he gradually weaned me on to T4 only. The change in my health was evident so he relented and chose to treat me with a combination T3 T4 which was not too bad but obtaining a low enough dose of T3 proved very difficult given that the only licensed dose in the UK was 20mg and I needed less. Cutting or breaking the 20 mg tablet was impossible as it crumbled and gave an inconsistent dose.
Eventually he mumbled things about peer pressure and it being difficult to justify T3 therapy and despite his admittance that I was better on it he still put me back on T4. He knows my blood results show me in the "normal reference range" however he also admits that these are not normal for me which is the whole problem with these tests at the moment.
For further info I have Thyroid antibodies (hashimotos) and hyperlipidemia. When he took me off Statins to see if they made any difference to my fibromyalgia symptoms (which he does not believe in either) I had a stroke. I was then dx with seronegative Hughes (APS) and Sjogrens Syndrome which also added to my other conditions of Cardiac Syndrome X and Hemicrania Continua.
I am now struggling with many hypothyroid symptoms and a TSH of 0.89.
Why oh why cannot I be treated with T3 or a combination T3/T4 which we know is in my best medical interest? Why does my Endo have to feel so much peer pressure that he cannot treat me with what he knows will be the best medication for me? Why are Doctors that know their patients and have treated them for ten years or more with conventional medications still feel that they cannot treat them with what they know is the best medicine option and with a reasonably cheap medication to achieve their optimum health? Is it not time the patients interest came first or was the hypocratic oath just lip service?
(For clarity I could have been given a private prescription and left to find my own T3 for the smaller amount but there was no willingness to prescribe on a named patient basis where it could be brought in from France very cheaply (5mg) and my GP refused on the basis that it was an unlicensed drug. When on T3 therapy alone GP local testing does not measure for T3 results or understand the corresponding affects on the TSH.)
I look forward to seeing your answers. Thank You

nors
Posts: 5
Joined: Thu Jan 26, 2012 9:19 pm
Quote

by nors on Thu Jan 26, 2012 10:20 pm

Re: T3/T4 Combination Therapy

I am wondering why you have not recieved any reply as I would be very interested in your answer

Surburbian
Posts: 7
Joined: Thu Jan 19, 2012 4:09 pm
Quote

by Surburbian on Fri Jan 27, 2012 1:33 am

Re: T3/T4 Combination Therapy

So am I!! I am waiting patiently......are we all going to get an answer? As I posted mine early I will be very upset if mine is ignored and will deduce from it that the experts do not want to answer it for reasons that are not related to anything medical. :?

KatieTattie
Posts: 22
Joined: Thu Jan 26, 2012 4:01 pm
Quote

by KatieTattie on Fri Jan 27, 2012 12:21 pm

Re: T3/T4 Combination Therapy

I would like to know too! Are these professionals getting paid to answer the questions on this forum? If this was my specialism I could fly through these questions. If they are getting paid can we complain as its being funded by the NHS through tax payers money? It is total waste of resources if this site has been set up and we are getting zero results. A real business would have shut this site down.

KatieTattie
Posts: 22
Joined: Thu Jan 26, 2012 4:01 pm
Quote

by KatieTattie on Fri Jan 27, 2012 4:10 pm

Re: T3/T4 Combination Therapy

Thanks for clarifying that the drs are not getting paid. However NHS choices and this website has been set up and is funded by the NHS and tax payers money. If the questions on here are not being answered properly, what is the point? I really don't want to be arguing or have to 'prove my point' I merely ask that the questions be answered. The type of answers we have been receiving are the same answers we have already been given by our Drs which have not been adequate, thats why we are asking them here. This is a really good opportunity for a new, fresh idea to work! I was excited to hear about this website and thought 'YES FINALLY!' but I am disappointed to be honest. This can be turned around if its addressed quickly, if not I imagine funding will be cut due to the amount of complaints that will be received. Its very hard to loose a bad reputation and I've already seen on many thyroid forums people posting how disappointed they are.

I have also heard of people who's post have been deleted or they have been barred?!!! I hope you do not do this to me!

Please! we just want help and don't want or mean to be nasty! We want this to work as much as you do!

KatieTattie
Posts: 22
Joined: Thu Jan 26, 2012 4:01 pm
Quote

by KatieTattie on Fri Jan 27, 2012 6:26 pm

Re: T3/T4 Combination Therapy

Thank you for your response. I too do not want to go into the ins and outs of funding etc.
What I am trying to get across is that we thyroid sufferers are intelligent people who have done research into our conditions. As with anyone who isn't an 'expert' advice has to be sought on certain matters. I was under the impression that this is what this service was for. Anyone can look up some of the more basic questions that only seem to be being answered.
What I have found is that the more taxing questions are being ignored or being given very basic answers, this concerns me. It concerns me as I am worried that no-one knows the answers even the 'experts'.
In business I take the view that complaints or suggestions are a good thing, its helps us improve as we can always grow. It seems a lot of people on here share my view.
How do you suggest we improve this situation? I do not mean to be patronizing when I say this. I believe this could be a wonderful service but the key element of answers to difficult questions is missing.

I posted a question regarding low cortisol levels and hypothyroidism and asked if the expert thought my results were low and with respect he skirted around the question.

I also ask this question with respect, Are we to not expect any answers to questions that may undermine other health care professionals? Its seems to me that those are the question that are not being answered.

Do you have any suggestions as to what we can do to make this work?

User avatar
Professor Colin Dayan
Posts: 6
Joined: Tue Jan 17, 2012 3:05 pm
Quote

by Professor Colin Dayan on Fri Jan 27, 2012 6:58 pm

Re: T3/T4 Combination Therapy

There have been clinical trials comparing T4 treatment with T4+T3 treatment and overall they show no benefit. T3 is much more difficult to monitor as the levels go up and down within a few hours whereas they are much more stable on T4. Compared to treatment with T4, where there is experience from thousands of patients in studies and millions of people worldwide over many years, there is no long-term information on the use of T3 in large numbers of people. We do know that even a mild degree of over treatment with T4 increases the risk of osteoporosis, fractures and heart disease (atrial fibrillation) with a risk of stroke. These risks are likely to be higher with T3, as this is the active hormone and the body cannot control the activity of the hormone in the way it can with T4.
It is for these reasons that doctors are reluctant to prescribe T3. Patients who take it and are certain that they derive benefit need to be aware that they may be exposing themselves to longer term health risks, especially with regard to the heart and the bones. And they should take the lowest dose possible to keep these risks as low as possible. Because the risks are likely to take many years to develop, there is a tendency for patients to ignore them, with the possibility that they may regret it later. This is particularly an issues in patients who only had subclinical hypothyroidism to begin with and in whom (see separate posting) there is not currently clinical trial data that treatment reduced healthy risks in the long term. It is worth considering the comparison with HRT for the menopause. Several years ago, this was considered a wonder treatment for women, and only more recently has it become apparent that it increases the risk of breast cancer and heart disease. General guidance to doctors is "first do no harm".
Professor Colin Dayan

ipman
Quote

by ipman on Fri Jan 27, 2012 9:02 pm

Re: T3/T4 Combination Therapy

Professor Colin Dayan wrote: <SNIPPED> We do know that even a mild degree of over treatment with T4 increases the risk of osteoporosis, fractures and heart disease (atrial fibrillation) with a risk of stroke. These risks are likely to be higher with T3, as this is the active hormone and the body cannot control the activity of the hormone in the way it can with T4.
It is for these reasons that doctors are reluctant to prescribe T3. Patients who take it and are certain that they derive benefit need to be aware that they may be exposing themselves to longer term health risks, especially with regard to the heart and the bones. And they should take the lowest dose possible to keep these risks as low as possible. Because the risks are likely to take many years to develop, there is a tendency for patients to ignore them, with the possibility that they may regret it later.
Good to see you joining us Professor Dayan. Your comments above are particularly material for me because both my wife and daughter are TSH suppressed and only feel well on doses that bring that about. With this in mind, could I ask you to give me your thoughts on the following:

1. What research work can you point me to that demonstrates clearly that people being treated with thyroid medication are more at risk?

2. Are you able to give any estimates of the risks in language understandable to the layman?

3. To what extent do you feel that doctors should have regard to the patient's quality of life versus such risks?

4. If the choice is between a shorter but happy life versus a longer but miserable life, do you feel that the patient should have a say on which option he/she would prefer?

5. If the patient clearly grasps the consequences and opts for the shorter/happy life, to what extent do you think a doctor should assist the patient in achieving this?

I realise these are not straightforward questions to answer but it is a major issue and I suspect that your answers will be of great interest to many of the participants on this forum.

Out of fairness I should say that I earlier posed similar questions to Dr Beastall (see viewtopic.php?f=185&t=2204&p=6338&hilit ... life#p6338) who declined to deal with them except to "acknowledge that patient choice is increasingly important".

I responded to Dr Beastall by saying: "My take on your answer is that the medical profession at this point in time simply do not have a definitive answer and cannot give patients clear-cut advice on the extent of any risks involved. For that reason, erring on the side of caution is the mainstream advice even if it means the patient suffering with debilitating hypothyroid symptoms for the rest of their lives. On the other hand, that does not mean the profession should impose this possibly overly cautious stance on patients who, despite the existence of somewhat nebulous risk factors, opt for restoration of their quality of life. The medical profession nowadays is obligated to recognise this and, in my view, if the medical adviser is satisfied that the patient is sufficiently informed to make the decision, then that adviser should enable the patient in achieving that aim. I believe that this is fully consistent with the GMC's guidelines on good medical practice. In reality, I do not think many medical advisers are adhering to the GMC's guidelines in this respect but it is the patients who are paying for non-compliance."

Your thoughts would be very much appreciated.

ipman

User avatar
talkhealth
Posts: 1782
Joined: Thu Nov 04, 2010 3:29 pm
Quote

by talkhealth on Fri Jan 27, 2012 9:07 pm

Re: T3/T4 Combination Therapy

Hello KatieTattie, you have said that you believe that "NHS choices and this website has been set up and is funded by the NHS and tax payers money."

We would like to further clarify that this is a web site soley owned, operated and managed by talkhealth partnership ltd, an independently run organisation. It is not funded by the NHS or tax payers. Also, we have not barred anyone form this forum and will not bar anyone who abides by our forum guidelines.

Our experts are trying their very best to answer all your questions. Thank you all in anticipation of your patience.

talkhealth
talkhealth
Visit our events page https://www.talkhealthpartnership.com/events

KatieTattie
Posts: 22
Joined: Thu Jan 26, 2012 4:01 pm
Quote

by KatieTattie on Fri Jan 27, 2012 9:24 pm

Re: T3/T4 Combination Therapy

Thank you, yes you have already pointed that out in an earlier post and I have not broached the matter of funding since then.

Locked
16 posts