shawsAdministrator

No - she shouldn't be weaned off it. She should write to the House of Lords as TUK have a Petition and in Scotland they have agreed not to withdraw T3. She should go and see/talk to her local MP. Excerpt from the following link:-

NHS England logo

Thyroid UK and ITT travelled to London yesterday to meet with NHS England and NHS Clinical Commissioning to voice our concerns about T3.

The meeting was attended by Julie Woods, CEO of Clinical Commissioning and Alex Williams, Deputy Director, Medicines Policy at NHS England.

We put forward concerns including the fact that the NHS England decision was not clear and that many CCGs are not following the NHS England consultation decision which has caused many patients to have their T3 withdrawn.

Alex Williams stated that this was not the intention of NHS England and that they thought the wording was clear but now realise that it needs clarification

The clinical working group are holding a meeting on 6 June and it was agreed that Thyroid UK and ITT would provide some input to this meeting with the intention of giving clearer guidelines to CCGs.

We will keep you informed as to progress.

thyroiduk.org.uk/tuk/campai...

endomad

Mine was reinstated after applying for individual funding for t3, I self sourced for the 10 months with a private prescription from nhs endo and sourced easily in france. In my area it was not my gp being unwilling but the ccg had put a blanket ban on t3. I have to see my endo every 6 months for continued prescription and 3 monthly blood tests. The ccg have insisted on blood test before each repeat 3 month prescription (what a waste of a top endos time) my gp doesnt feel confident enough to prescribe or follow my endos instruction.

She must be prepared to jump through hoops as no matter what NHS England say, local areas are making their own rules up. It is worth self sourcing to tide her over until it is sorted, many people have always self sourced and is a far less stressful way of self care. A letter stating the facts and that she will hold them responsible for her health falling off a cliff and for it to be put on her medical records, if poss get the names of who have denied her t3 and name them in the letter. Iv alays found it helps focus them when it is in writing and on my records.

My MP was brilliant and applied pressure on ccg, NHS England phoned my ccg and told them they couldnt remove my t3 as clinical need and yet they did for 10 months. They said there was no proof that it worked better than levo, I argued i was the proof that for me and backed up by my endo, it was the only treatment that worked for me. Persistence was the key for me. x

kissemiss

Hi poppppy,

I have been on 40mcg t3 only a day for over 17 years to treat my Hypothyroidism. During this time my results have hovered around TSH at 0.11 range ( 0.30 to 5.50) and my t3 around 5.0 range (3.50 to 6.70) but I have felt relatively ok.

Recently my doctor has got really worried about my low TSH even though it has remained the same more or less.

Was sent to a endocrinologist last summer who confirmed I needed to be on t3 and that ideally my t3 should be in the middle of the range as long TSH is on 1.0 or above (which of course is impossible).

I was asked by my doctor to decrease my t3 from two tablets to one tablet a day based on the low TSH but I refused because I had a challenging month ahead and he reluctantly agreed to delay this until end of September.

I had another blood test October (having tried tried one tablet a day for a couple of weeks just to see what would happen needless to say I felt awful I almost stopped to functioning)

My results were TSH was still low at 0.15 new range (0.5 to 4.4.)

My t3 were 3.3 ( BELOW RANGE) new range (3.5 to 6.5)

My gp wrote again for advice about my t3 dose because he was concerned that my TSH was still too low at 0.15 new range (0.5 to 4.4) (the below range t3 level was not mentioned!)

Response from a senior lead endocrinologist: “TFT” I would tend to rely on TSH alone – levels of ft3 vary significantly during during the day due to its short half life........

Based on this I would repeat the TFT in 3 month time and if the TSH remains below normal reduce the t3 dose to 10 mcg rather 20 mcg a day – then repeat the TFT again after 3 month.

Needless to say I can not survive on less than 40 mcg t3 a day and with t3 being below range.. Why can't the endocrinologist (who have all the power in their hands) be better informed about how the body needs t3 (specially if you have 0 t4).

What can I do? My GP is only following the endocrinologist guidelines.

poppppy in reply to kissemiss

That is terrible . So sorry for you . I dont understand why they are all obsessed with your tsh . I thought tsh was always low if you are in t3 only because your body doesnt need to push for better levels of t4 cause you have enough t3 so its happy . That's my simple explanation lol.

So lowering t3 is just taking away what u need to live and getting them nowhere .

Also this crap about t3 fluctuates so much it's not useful relying on the results . Then how come they rely on them when it is a high result .

But more importantly someone on here sent me research that showed the t3 blood results of people who were not hypothyroid .as in they were well people who had got the disease . Their blood were taken every 20 minutes and they had varying results yes but not out of the normal range particularly. So yes I reckon our blood results will fluctuate but not out of the range . So if they are out of the range and we are taking our tablets consistently then our doese are too low if we lie below the range .

Also doesnt it depend on how we feel . As some peoples normal range is higher or lower than the norm . Isn't it 5 percent of people . As the range the labs go by is that of 95 percent of "normal " people. Think they are called euthyroid .

Anyway good luck .

So sorry you are having this battle

Poppy

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kissemiss in reply to poppppy

Thank you Poppy, My tsh has been around 0.11 range 0.30- 5.50 and my t3 has been around 5.0 range 3.50-6.70 for the last fifteen years and I have been feeling well managing to hold down a challenging job. During this last year I have had no end of trouble because suddenly my my stable tsh is below 1.0.

How I feel or the level of my t3 seems completely irrelevant.

The thing is if they wean you off t3 you will be unable to stand up for yourself. I need to get hold of some clearly written document which explains in a simple way how to decipher a blood test result if a patient has been on t3 only for many years.

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poppppy in reply to kissemiss

Have you got t3 results from when you were on thyroxine only showing your t3 to be below normal range .

Even though your tsh and t4 were in normal range? .

Were you put on liothyronine because you do not convert t4 to t3 .

Or why were you put on it? And have you got proof of the reason ?

Poppy

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poppppy in reply to kissemiss

Kissemiss, found the research article .can send it you if you give me your email address as photo attachments . As got it in paper form only . But you may be able to Google it . It's called " free triiodothyronine has a distinct circadian rhythm that is delayed but parallels thyrotropin levels "

Just looking at a graph of peoples t3 blood results over 24 hours . These are well people . And looks like their t3 swings between 5.2 and 5.7 at most . So this fluctuating through out the day is a range of 0.5 so nothing drastic at all .

Also there is a graph showing how t4 bloods fluctuate and it looks like that is between 15.5 and 17 at most or at the least 0.3 so nearly the same or worse depending on how you look at it .

So that knocks this on head

Response from a senior lead endocrinologist: “TFT” I would tend to rely on TSH alone – levels of ft3 vary significantly during during the day due to its short half life........

Good luck

Poppy

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kissemiss

Hi Poppy, More than 17 years ago my gp noticed during a routine blood test that my tsh was 150 but I was asymptomatic. Immediately I was put on a small dose of Levothyroxine but my body could not tolerate this hormone I got really unwell swollen red face,body and neck, difficulties breathing,palpitations,chest pain .......I suffered for three weeks before I decided to stop taking Levothyroxine.

After a couple of months my gp persuaded me to try Liothyronine instead because of my very high tsh. Reluctantly I was persuaded to start t3 and strangely this hormone agreed 100% with me and my body has got used to it. Soon after I started Liothyronine I recovered and could get back to work.

On my blood tests t4 soon disappeared and tsh hovered around 0.5 and my t3 has been and should be at mid range or slightly above for me to feel well.

The two endos will be calling me for a blood test every three mounts because they want my tsh to be 1 or above and they will reduce my t3 tablets until that happens.

Needless to say by then my heart will be probably be completely damaged, my brains will stop to function properly, my adrenal/liver will suffer and probably collapse..........

The endos are not testing the t3 levels. I need a minimum of 40mcg t3 a day to be able feel like and function as a human being.

poppppy in reply to kissemiss

I am absolutely gobsmacked as we say in my area of country if you are not cool lol .

Seriously though i am appalled. Have u asked for advice from others on here .

I cant understand why they are trying to bring a tsh up that will not rise whilst you are on t3 only . And even more ignorant than that they are ignoring the fact your t3 is now below normal range . And could be by now dangerously low .

I thought all of us on t3 only had tsh of less than normal range. My tsh is 0.1 or something for years . My consultant only interested on t3 being in range . She even let my t3 run above range for a year or so as I felt well .

In hindsight I think running t3 above range could may be make you feel well but overstimulated like taking speed say . So in long run end up tired out . So I know try to be in range . I too am on 40 of liothyronine .

You had such obvious symptoms to prove you cant tolerate levothyroxine too. Are these documented in your notes .

Perhaps you could get thyroid UK or someone they would respect to put in writing that it's ok for tsh to be subnormal whilst on t3 only . But t3 must be kept in range .

Or could you ask people on here who take t3 only to post just their usual blood results.

So then you could be armed with a print out of 50 or so different peoples blood results (that their endos are happy with ) that mirror what yours used to be .

I will look for the research someone sent me off here .

As I think it highlights that t3 doesnt fluctuate that much in the day that it jumps out of the range . Also my argument would be if it fluctuates so much to not be relied upon as a result then how did they come up with the normal range in the first place . And secondly if the result comes back as too low on a lot of occasions . Then must be a big coincidence that you happen to take the blood each time when it is fluctuating on the low side of the range . Wouldn't it sometimes br fluctuating to above the range when you happened to have your blood taken.

When I was on Levothyroxine only my t3 was always below range . When I added liothyronine then my t3 was in range . When i highered the dose it went above range . When they took me off liothyronine my t3 went below range again . Went back on it back in range .

Seems like that's a pretty clear indicator that the blood results for t3 arent affected by fluctuating t3 throughout the day !

Also half life is 3 days isn't it or 18 hours. So not that quick . I asked a pharmacist but it is also googled easily . So half life isn't that short . The half life is Long enough to take the tablets 12 hourly (so I take 20 mcg twice a day) and get a steady amount in your blood stream .

Maybe if you rang your hospital pharmacy advice line she can send you literature to back this up

Poppy

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kissemiss

I found the interesting article about TSH which you mentioned using the Google link . Poppy thank for being so supportive and I will also consider some of the other points you suggested.

poppppy in reply to kissemiss

No problem. Hope it helps . Let me know how you get on xx

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