Hi. I was diagnosed with thyroid cancer in 2005. My thyroid and para thyroid glands were removed. I have been on Liothyronine ever since. I was monitored by an oncologist until 4 years ago, and now by my GP. I had been taking liothyronine 20mcg x 3 times daily. My GP has tried to reduce this to 20mcg x 2 but I felt I was not functioning well. I now take 2 one day and 3 the next. However my T3 levels are high (9.1) , TSH 0.85 and free T4 0.5. I have never been referred to an Endocrinologist but I am now considering consulting with one. I was told I needed a higher dose of meds to suppress cancer returning so I am wary of reducing my dose. Recently I have been suffering from a weird motion feeling (as if I am on a bridge that is bouncing). I have been taking the Teva brand but yesterday moved to Morningside so see if that brand makes a difference (after reading previous posts). No one seems to be able to tell me if age makes a difference to the amounts of medication I should take and the interaction with other hormones (I am 60 and female). Can anyone share your experiences with me please? Thank you
liothyronine: Hi. I was diagnosed with thyroid... - Thyroid UK
liothyronine
If you are in the UK it is a requirement for you to be prescribed and under the care of an endocrinologist when taking liothyronine. My endo told me that.
Oh I have never been told that. Thank you. I will need to go private as they seem to be scarce in my area on the NHS.
There has to be an endocrinology dept. somewhere in your area. I'd suggest you go back to your GP and have a discussion about it.
This is the NICE guidelines:
NHS England and NHS Confederation policy guidance, Items which should not routinely be prescribed in primary care: policy guidance, recommends that:
Liothyronine should only be initiated by an NHS consultant endocrinologist when being prescribed for the treatment of hypothyroidism.
Liothyronine should be prescribed only if no alternative intervention or medicine is clinically appropriate or available for the patient.
Patients taking liothyronine for the treatment of hypothyroidism who have not already been reviewed, should be reviewed by an NHS consultant endocrinologist.
Thank you. That’s very interesting. I think I should have been referred and I haven’t, despite asking. I will mention this to GP.
I should add that it's quite normal for thyroid med needs to change over time, which is why it's tested annually at minimum. Personally I am tested every 6 months. All sorts of thing affect the thyroid, including the seasons!
One of the reasons that doctors are loath to prescribe T3 is that it's difficult to test the levels as it has such a short half life, unlike Levothyroxine which has a long half life and is therefore more 'stable' and easy to test. (That's my very unexpert take on it anyway 😀)
That plus the cost. I did try Levo many years ago but I felt awful on it. I don’t think the change from T3 to T4 was managed properly though. I was advised by the oncologist to stay on liothyronine.
Lucky you. After thyroidectomy for thyroid cancer I was put on 3x20 mcg T3 for 9 months and then it was replaced with a mega dose of Levo which made me ill
The half-life of T3 is about 24 hours, which gives plenty of time for testing. I suspect that is just an excuse!
Oh, okay! I suspect you're right then....
I don’t think this can be strictly correct - I am prescribed liothyronine by Roseway Labs
Not sure what part you're referring to, but I was just quoting my endocrinologist and NICE guidelines. Beyond that, I have no idea.
It definitely sounds like you need that endo referral. And I definitely wouldn't be taking lio reduction advice from a gp when your case is obviously not straightforward. As for the different brands, some people are affected by the different ingredients in the different brands. Are you intolerant to any ingredients which might affect absorption?
Thanks Forestgarden. Yes I will push to see one. I have always been wary of reducing my meds due to the cancer risk. It will be interesting to see if the change of brand makes a difference to the way that I feel. It’s so complex!
TopBiscuit for info.
It is not a requirement for an endocrinologist to monitor liothyronine therapy. Guidelines suggest liothyronine should only be initiated by an endocrinologist but doctors are able to make their own prescribing decisions. This guideline came about as a result of turf wars between some endocrinologists and other doctors who were successfully treated patients that were failed by the endocrine community. The recommendation that only NHS endocrinologists should initiate NHS prescribing of liothyronine came from endocrinolgists and in not evidence based. Few endocrinologists have any knowledge or experience of treating patients with liothyronine. The guideline was based on cost not clinical outcomes.
There have been substantial revisions in the guidance for supressing TSH after thyroid cancer. I've no expertise on this but generally TSH is suppressed to a lesser extent and for a shorter period than in the old (2005) days. It very much depends on the type of cancer. I would consult your oncologist or an endocrinologist who specialises in thyroid cancer.
If there is a need to keep TSH low combination therapy with a mix of levothyroxine and liothyronine would be better as liothyronine monotherapy tends to produce a varying TSH. Since you've been on liothyronine monotherapy for so long you may not do well on levothyroxine so any move to it must be done slowly and carefully. I would not accept levothyroxine monotherapy, it carries higher cancer risk, it's safer to keep fT4 in the lower half of its reference interval.
Thank you for that information Jimh111. I was not aware of these changes. I did ask to be referred but that was not forthcoming! I will mention these changes to my GP and ask for oncologist/endocrinologist referral. I just want to make sure that I am taking the correct dose of medication.
Thanks for disposing of that myth Jimh.
Few endocrinologists have any knowledge or experience of treating patients with liothyronine.
There lies the crux of the problem!!
Guidelines suggest liothyronine should only be initiated by an endocrinologist but doctors are able to make their own prescribing decisions.
And how many GPs are adequately conversant with T3 to allow them to make reliable decisions....when endos don't seem to have all the answers?
Lindy's GP clearly is not....they did not even understand a basic requirement that a constant daily dose of T3 is important.
There again another GP may be well informed!
Would you be happy for the chap who cleans your car to take over and do a full diagnostic test?
Specialists exist for a reason.....despite the fact some of them appear to be clueless!!
Thyroid treatment is a mess of monstrous proportion and it is leaving many patients struggling to cope.
Regulations, guidelines whatever the source, I'd suggest (again!) that Lindy59 consults an endo who is supposed to understand T3 and it's use for cancer patients.....or an encologist
We all know higher levels of T4 are a cancer risk so surely T3-mono is the wise choice.
You refer to TSH, why must the fixation with TSH persist ....particulary with T3-only when it naturally lowers the TSH? How can that be a reliable marker?
Rainbow-Lover the trouble with thyroid treatment is that it abounds with "myths" in the form of established beliefs rather than on a reliance on verifiable scientific facts.
The myth that seems to emerge here is that a general practitioner is qualified to take on the work of a specialist. Lindy's GP has proved the weakness in that situation.
That's a big ask of a GP!
Rant over!!!
But if he’s willing to do it under the guidance of an endo or oncologist there’s no problem.
We all know that medical schools teach students a pitifully limited amount about the thyroid. When I was diagnosed and treated with thyroid cancer, my GP told me he learned more about the thyroid in our consultations than he did at med school.
I can’t believe to this day that he knew nothing of basics such as conversion from T4 to FT3.
Nothing surprises me now!!
Were you put onto 3 x 20 mcg Liothyronine post op?
Rsinbow-Lover. I was and have been until 2 years ago.
From what you say you felt well on 60mcg T3. If I were you I would fight for your G.P. to reinstate this dose and give it time to see if you regain your health. Alternatively, you could have a telephone consultation with Roseway Labs and obtain a T3 private prescription to top up the 40mcg your G.P. provides, to your previous 60mcg dose. However, you would not want to mix brands. Most people get Thybon Henning T3 from Roseway-100tablets of 20mcg at c.£60 or £65. Commonly , they quarter them as they take doses of 5,10,or 15 mcg daily. If you bought your whole prescription, at a dose of 60mcg daily, this is only 33 days worth. If we assume they could prescribe Morningside at the same cost, you would be buying 20mcg daily only, if topping up your current prescription. I don't know if they supply Morningside or not. The appointment with the prescriber is around £50.
If you ask for an appointment with an Endocrinologist on the NHS, I would be surprised if they did not immediately insist you take T4 levothyroxine only. I believe you would lose your T3 prescription altogether. It would be an Endocrinologist instructing your G.P. to change you over to T4 levothyroxine. It would be highly unlikely he would reinstate your T3 against an endocrinologist's advice. Your G.P. doesn't understand T3 at all as previously explained to you. He is , however, happy to prescribe 40mcg daily, which is expensive to buy privately, especially since you need 60mcg daily.
I believe asking for an NHS Endo referral will end in disaster, and removal of T3. If you want a referral with an Endo , for peace of mind, and reassurance, I feel it needs to be private. A private referral, to a T3 friendly endo who does not insist on a G.P. referral. If no G.P. referral necessary, you SHOULD have the option of stipulating that your G.P. is not informed of your appointment. Some will do this, others won't. You would need to check.
It is a lot to think about , I know. I do think asking for an NHS endo referral will back-fire on you, and you will end up prescribed T4 only.
Test your vitamin levels privately , in line with Slow Dragon's advice to make sure they are optimal.
How were you feeling before this GP got involved?
Symptoms are an important part of diagnosis
Your GP should not alter your T3 prescription....that is the responsibility o an endo.
I suspect he is trying to reduce his costs!
Money over health!!
Your GP clearly doesn't understand T3, he is treating it like levothyroxine in that he is prescribing 2 one day and 3 the next which is entirely wrong. T3 must be taken as a constant daily dose.
Your TSH and FT4 will be lowered by T3 this is how it works. Don't let the GP try to dose your T3 by TSH.....ever!
Refuse point blank to alter your dose before you see an encologist or an endo. Hopefully they will be more clued up!
Age is irrelevant.... we need what our body needs.
After 20 years on Levo I could not function
T4/T3 combo failed too.... so the last resort is T3-only
I'm 78 and need a very large dose of T3 to function....which I have to self source and self medicate. Long story in my bio. My GPs now leave me in charge of my thyroid care.
The endo I saw admitted he couldn't even interpret my original diagnostic labs!!
Medics seem to be terrified of T3 and relate all sorts of untrue horror stories about it....used correctly it is no more dangerous ( often less) than any other medication. A medic once confirmed that! . It's the ignorance that causes the fear.
I would suggest that the symptoms you are now experiencing are the result of the reduced dose of 20mcg every other day....that is enough to have huge impact!!
Some of us just don't conform to strict guidelines, we are humans not machines....and that can make medicating/ dosing problematic for ill informed medics.
You know your body better than anyone else so medics must listen to your personal experience.
On T3-only we tend to monitor by symptoms because tests were not devised specifically for this....it's how it was done before testing developed!
Speak to your GP and ask him to reinstate your original dose until you see a specialist. Speak to the Practice Manager if this is refused.
Good luck!
I now take 2 one day and 3 the next.
you must always take same dose everyday
You can cut 20mcg in half to get 10mcg
Use pill cutter of sharp craft scalpel
Get B12, folate, ferritin and Vitamin D tested
Recently I have been suffering from a weird motion feeling (as if I am on a bridge that is bouncing)
Could be low B12
Totally agree with DippyDame and SlowDragon . If T3 is going to do what it's supposed to do you need a constant dose every day.
Also, reducing by 20 mcg in one go will not have don't you any favours. it's too much. Increases/decreases should be no more than 5 mcg at a time.
And never believe anything a doctor says about T3 - without checking here first! - half of them don't even know what it is! 
See the NICE Guidelines on thyroid cancer, in particular section 1.4 on ongoing treatment with TSH suppression nice.org.uk/guidance/ng230/... . This describes how the risk should be assessed and whether TSH supression should continue long term.
NOTE: Section 1.4.2 states "Offer thyroid hormone at doses...". The reference to thyroid hormone is NOT an oversight. Many older and overseas guidelines refer to 'levothyroxine', the NICE Guidelines specifically refer to 'thyroid hormone'. The Guideline consultation document referred to 'levothyroxine' and I suggested it be changed to 'thyroid hormone' to allow combination therapy in some cases and so it could adapt to future research. The NICE guideline explicitly allows liothyronine therapy (although from a TSH suppression viewpoint I feel levothyroxine / liothyronine combination therapy is better).
Thank you everyone. You are all providing me with great information and I wish that I had known of this site and chats long before now.
I felt fine on 3 x 20mcg and I functioned well. I am a fit active person and very aware of changes in my body when they happen.
I have asked for bloods to be taken to get everything checked so I await the outcome of those tests.
Unfortunately when I don’t feel great, I always start to worry that cancer has returned. Hopefully it is the meds and nothing more sinister.
Thank you all for your time. I really appreciate your help.
When you take liothyroine the time of the blood draw makes a big difference to the result. I try to have the blood taken half-way between doses.
I will bear that in mind for next time. Thanks.
T3 ….day before test split T3 as 2 or 3 smaller doses spread through the day, with last dose approximately 8-12 hours before test
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum as well
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