Ataoglu: Low T3 in critical illness is deadly, ... - Thyroid UK

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Ataoglu: Low T3 in critical illness is deadly, and adding high T4 is worse

PR4NOW
PR4NOW
89 Replies

Professor Smith had an interesting post on the effects of low T3 in critical illness.

thyroidpatients.ca/2019/08/...

This has been known for awhile but no trials that I know of studying what happens if you gently supplement T3 in these patients. PR

89 Replies
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JGBH

Thanks for this link. I subscribe to Canadian Thyroid articles and receive it this morning.

It’s so frightening to see how endos in this country ignore the importance of T3. It’s neglect on a grand scale. I am a very poor converter, having no thyroid since 1980 and taking only Levothyroxine since then. I am having a most difficult time, no quality of life, can barely function and feel like I am dying slowly and prematurely.

Something needs to be done so that we can be treated adequately.

However, I doubt the useless endos will be intelligent enough to accept they are damaging patients’ health and many of us will die prematurely. This is shocking and totally unacceptable.

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vocalEK
vocalEK
in reply to JGBH

You must find yourself a doctor who is not afraid to prescribe what the patient needs. There is help in both the UK and USA to find such practitioners. Perhaps Canada offers such help too?

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Greekchick
Greekchick
in reply to vocalEK

Yes there is help here in Canada too. You need an endo - and they order the whole thyroid panel for you including antibodies. Helpfulness may differ by province however. GPs not really good with thyroid anywhere, I have come to learn.

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JGBH
JGBH
in reply to vocalEK

Yes, I really need help as don't think I can go on much longer as it is. Not easy though. I live in the UK where NICE has prohbited the prescribing of T3.... So much for the care of patients, yet the NHS waste so much money in other domains. Am hoping the latest endocrinologist I saw last week - due to see himon the NHS mid-October - will be allowed to prescribe a 3 month T4/T3 combination trial.... Keeping fingers crossed.

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vocalEK
vocalEK
in reply to JGBH

In the UK, GP cannot prescribe T3, but an endo can. In the U.S., we are lucky in that a GP is not prohibited from prescribing T3. My primary care provider is working with me. Hallelujah!

Most know so little about thyroid that they would probably feel more comfortable referring to an endo when asked for T3.

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JGBH
JGBH
in reply to vocalEK

Yes, i know BUT the CCG (commissioning bodies who keep an eye the money) often refuse because of the extortionate increase in cost of T3. NICE stopped the prescribing of T3 last year because of cost increase by greedy pharmaceutical companies, so most people who need it cannot get it unless they can afford to source it privately and then often doctors refuse to monitor them. Different system from US.

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JaneyJaney
JaneyJaney
in reply to vocalEK

I’m in UK my GP checked rules, he said he will prescribe T3 if an NHS endo recommends it. I’ve heard of other NHS GPs too, just like finding a needle in a haystack though!

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greygoose

The question is: do they ever actually test the FT3?

Very interesting article, thank you for posting. :)

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SewinMin
SewinMin
in reply to greygoose

Sounds like it from this: ejinme.com/article/S0953-62... Or at least it refers to high/low/normal levels of t3, t4, tsh, so it sounds like they measured them.

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greygoose
greygoose
in reply to SewinMin

But that was a staged piece of research, not normal life. Last time I was in hospital, for a non-thyroidal illness, they tested my TSH and FT4 as part of their routine testing. They found zero TSH and zero FT4, because I've been on T3 only for a long time. And, the endo came rushing into my room to tell me I had a pituitary tumour! I asked if she'd tested my FT3, and she looked at me as if I were crazy, and said 'no?', as if saying 'why the hell would I?' And she looked thoroughly crushed and bewildered when I said 'because I'm on T3 only'. And, I fear that is pretty typical, these days.

By a quirk of fate, I learnt last night that my cousin had just died of a brain tumour. I'm pretty sure she was hypo, most of the family are. But I doubt anyone ever tested her FT3. I think she died more of exhaustion from the treatment, than from the tumour itself. She was very frail. Testing her FT3 might have given her a bit longer.

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DippyDame
DippyDame
in reply to greygoose

Sorry for your loss greygoose.

I am wholly convinced that FT3 testing must be routine/monitored from an early age..

There are none so deaf as those who will not hear!...or more importantly "listen"

Take care

7 likes
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greygoose
greygoose
in reply to DippyDame

Thank you, DD. And, I do so agree with you. Far more thyroid testing should be done as a matter of course - if you don't know what normal is, how can you know when something's off. But, the truth of the matter is that they just don't want to know - for many reasons, I suspect. But, I'm just a sweet conspiracy theorist and I suspect everyone and everything!

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SilverAvocado

Did you intend to say SWEET conspiracy theorist? I really like it!

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greygoose

Yes, I did. :D

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AnotherEarlyRiser

Sorry for your loss.

Another conspiracy theorist! Just because we're paranoid....

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greygoose

Thank you.

Exactly. And, another name for a 'conspiracy theorist is 'a person who researches a subject and then uses logic and critical thinking to form an educated opinion instead of just blindly believing whatever they see on their television, or read in the Daily Mail'.

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Angelic69
Angelic69
in reply to DippyDame

So true, well said dippydame.

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jgelliss
jgelliss
in reply to greygoose

I'm so so sorry for your loss . I have no doubt that testing thyroid markers would have been probably her savior . May Your Cousin Rest In Peace .

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greygoose
greygoose
in reply to jgelliss

Thank you, jgelliss.

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Kitten44
Kitten44
in reply to greygoose

Hi GG, I just want to say, sorry to hear about your loss.

I know half my family is hypo, but people just think I'm thyroid obsessed and ignore me, and as to their symptoms, put it down to ageing...

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greygoose
greygoose
in reply to Kitten44

Thank you, Kitten.

Yes, my family thinks the same. I did have a tentative conversation with my cousin on the subject, some years ago - she was ill and the doctors couldn't find out why - same old story! - and I suggested getting thyroid tested, but I don't think she ever did.

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Mickeydooley

I’m very sorry for your loss GG. My sister in law is having a terrible time with fatigue and extreme muscle pain among other things which I recognise as UAT symptoms. Doctors are baffled and suggesting all sorts of treatments but haven’t done thyroid testing. I suggested it to her but my family think I’m a bit of a hypochondriac. I’m very concerned that she’s going to undergo surgery without first doing simple thyroid testing.

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greygoose

Thank you, MD.

It's incredible, isn't it, that they never think to test thyroid. And, if they do, it's only TSH. Won't the surgeon ask for her thyroid to be tested before undertaking surgery? I thought they did at least do that.

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Mickeydooley

They haven’t tested as yet but I’ve asked her to have her thyroid function tested before any surgery. She told me this evening that another friend of hers had suggested the same thing so she’s thinking about that now. She’s been very unwell for a long time. 🤞

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waveylines

So sorry for your loss greygoose. Very sad news. Your poor cousin....

The NHS is good with emergency care but chronic illness are very poor.....unless you hit on a gem! For example my cardiologist rang me as he was concerned by my test results and wanted me to start treatment asap via my GP..... ahh but we all know the difficulties of obtaining an appointment....usual wait at my surgery is a month. Reception wouldnt book me an earlier one even when I explained.....had to resort to daily ringing....annoyed the hell out of the receptionists but I dont give a fig!

My GP sent me for a blood test she didnt tell me it included thyroid. Oblivious I went in the afternoon and had had my thyroid meds. Of course the ft4 was way over the upper threshold at 27 so she rang me. I explained that the test isnt valid and why. GP said oh I didnt know thyroid blood test is fasting one done first thing!! Shes been a GP for years!!!!! Words fail me.....

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Greekchick

Dear greygoose,

My sincere condolences on the loss of your cousin. Thinking of you and sending good thoughts your way tonight.

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Lora7again

So sorry for your loss greygoose ... I lost a good friend to a brain tumour from diagnosis to death she lasted 15 months. It was horrific to watch a pretty woman become a wheelchair user and gain weight because of the steroids. She was 46 when she died and left behind two children ... I still miss her now 12 years later.

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greygoose

That is awful, Lora, so sorry for your loss.

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JGBH
JGBH
in reply to greygoose

I ask my GP to test for FT4 and FT3. Although very bottom of range for T3 and even below range on occasions she was not doing anything telling me she was not allowed to prescribe T3 and that no NHS endo would either!!! Money saving as opposed to lives saving!!

Went to see an endo privately last week and he said he was surprised I wasn’t put on T3 straight after thyroidectomy back in 1980...

Am seeing him again at hospital and hope he won’t be prevented by CCG from prescribing a 3 month trial T4/T3.

Incidentally what T3 brand do you take and is it monotherapy or combined therapy?

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greygoose
greygoose
in reply to JGBH

I'm on T3 only, and I take Tiromel at the moment. But, I think I've tried most of them in my time.

Good luck with your T3 trial. :)

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JGBH
JGBH
in reply to greygoose

Thanks. In what dosage is Tiromel provided? Do they do 5 or 10 mcg?

How long have you been on T3?

Not sure yet the CCG will allow the endo to prescribe it ....

This is the UK where, as you know, NICE have stopped prescribing T3!

Feeling so very ill and that I won’t be able to go on like this for much longer. Great health deterioration for past 4 years and a remarkable degradation in past year more so in recent 6 months! Am scared and feeling so vulnerable.

Sorry about your cousin. Yes she could have been helped but .... the usual NHS dragging their feet and ignoring patients! Despair.

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greygoose
greygoose
in reply to JGBH

They only do 25 mcg.

I've been on and off T3 - T3 only and combined T4/T3 - for too long to remember - well, too long for me to remember, I still have no memory. Over ten years. And I buy my own.

My cousin lived in Spain, and I live in France, so just goes to show that the situation is much the same everywhere.

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JGBH
JGBH
in reply to greygoose

It’s incredible no one seems to want to understand what misery thyroid dysfunction can bring! Such an important metabolic function being ignored!

How much do you take, and do you take it in split doses?

I thought in France they usually prescribe drugs that one has to pay for and sometimes gets reimbursed (only part of cost) if you have an assurance maladie .

Does your medicin prescribe or do you have to see an endo?

Take care.’x

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greygoose
greygoose
in reply to JGBH

As I said, I buy my on. On-line. I gave up trying to get doctors to understand my needs. Be they GPs or endos. But, GPs can prescribe it, if they want to. They usually don't.

I take 75 mcg all in one go, when I get up. Splitting the dose didn't help in anyway, so I don't split it.

The system in France is that you pay up-front for everything like GPs, endos, other specialists, and prescriptions. And, you get 75% back from the health system - like the NHS - and the other 25% from private insurance - which the majority of people have. For dental and optical work you get practically nothing back from either of them. Recent repairs to my false teeth cost me €750, and I got less than €200 back. But, for a hospital stay, you don't have to lay out anything. The paperwork is all done by the hospital, and they are paid directly by the health system and the private insurance.

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JGBH
JGBH
in reply to greygoose

Indeed difficult to understand why thyroid problems are ignored!!

At least I understand buying T3 in France (or Germany) is much much cheaper than it would be here since they leave Big Pharma rip them off!

So you can get T3 online without a prescription?

Thanks for updating me on health costs in France nowadays.

At least still a better service all round. I have a French friend who has MS (had it for 25 years). When she saw a neurologist here they told her she didn’t have MS. Off to France she went. Had mri scans and was diagnosed with MS. They really couldn’t understand how neurologists denied she had beginning of MS. Gave her a CD of MRI scan and a letter (written in English) to give to neurologist in UK. He had to admit she had ms!! Shocking and disgusting! She was put on first line treatment.

Luckily she has the slow developing form. She goes back to France often (lucky her still having a sister living there) to have all her problems checked (after she has seen someone here and they still say all is fine when it’s not).

It’s very lucky she has the possibility of going to France to ensure she maintains some kind of heal

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JGBH
JGBH
in reply to JGBH

Hi GG

Sorry press send by error of previous message.

She can maintain her health by having everything checked in France and then bring evidence back to UK . They can’t deny it then! Last year she felt her ms had deteriorated, it took her months before the Brito agreed to see herb(refused twice ) did an MRI scan and told her there was no progression (because didn’t want to give her second line treatment, she’s 69). She knew it had progressed so went to see her French neurologist and surprise: ms had progressed! The Neuro was really angry and gave her the evidence plus a letter to take to English neuro stating she needed to start second line treatment and that he would like to speak to him. He would have prescribed the treatment but felt she should get it where she lives .

So neuro had to prescribe the treatment and she is so much better than she was a year ago.

Here, they fob you off all the time, especially if you’re past 65 and have serious health problems. It’s the cull.

Sorry but am so angry about such neglect, letting people more ill and dying prematurely.

I know it’s not perfect in France and service has deteriorated over the years but still a superior service. How long for though?

Sorry about rant but it does illustrate the difference.

Just wish I had family left in France.... sadly not the case.

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vocalEK
vocalEK
in reply to JGBH

If you are old, you are disposable.

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JGBH
JGBH
in reply to vocalEK

Absolutely. It’s disgraceful the way these quacks treat older people!

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greygoose
greygoose
in reply to JGBH

T3 is cheap here - if you can find someone to prescribe it. But, that doesn't mean they're any more likely to prescribe it here than in the UK. It's just pure ignorance. And, they may be very good at some things, here, but they're just as bad with thyroid. Some of the endos are so ignorant it makes your eyes water!

Neurologists are usually very good here, but even there you can get some right ignoramuses! I saw one, looked about sixteen, picked his nose all the way through the appointment! Asked a question and before I could get an answer out, asked another one, and so forth. I didn't get to answer any of the questions. Ended with him saying there was nothing wrong with me, although he had a letter from my previous neurologist saying there was (she'd left the district).

Please don't apologise for your anger. I'm feeling rather angry myself, tonight. I feel I want to smash things, but it's not in my nature to do so, so no relief. :'(

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JGBH
JGBH
in reply to greygoose

What a life! If we lived close by we could smash a few plates Grec style! x

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greygoose
greygoose
in reply to JGBH

You know what? I might enjoy that! lol As long as they weren't pretty plates.

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JGBH
JGBH
in reply to greygoose

So would I! 😀

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Jackiez
Jackiez
in reply to greygoose

I lived in Spain for 13 years and although they routinely included FT3 in my blood test they don't actually prescribe T3! I'm very sorry for your loss Greygoose. X

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greygoose
greygoose
in reply to Jackiez

These days, they don't even test FT3 - although they did when I was first diagnosed. They don't see the necessity. But, if you insist strongly enough, they usually cave in. One doctor said to me: but I wouldn't understand the results if I did test it. I said, don't worry about that, because I will! They give you a piece of paper with the blood tests to be done written on it. And, if they hadn't put FT3, I added it on.

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JoJo891

This a really interesting and informative post. I have read it. Many thanks.

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Marz

Thank you for posting. 😊

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mourneadventurer

Thanks for posting.

No surprise about the cardiac and kidney results. As the heart can only utilise T3 .

Testing reverse T3 as well would’ve indicated an underlying unidentified unaddressed root cause.

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McPammy

Thank you for posting this I found it really interesting.

When in hospital last year I felt near death with low T3 and too high T4 along with adrenal insufficiency. I didn’t have any other critical illness. I can understand though that if one had a critical illness on top of low T3 and high T4 that you may not survive.

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posthinking01

I have been trying to get the medical profession to listen to the dangers of prescribing Ciprofloxacin in serious illness as it lowers T3 as it is a fluoride based antibiotic. This is a very interesting article which I can add to my data. Thanks for posting

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Angelic69

Fluoride has been adentified as a cause of thyroid disease hasnt it.

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posthinking01

Yes but it was also used many years ago to treat hyperthyroidism - so you can imagine what any of the fluoride based antibiotics do to the sick patient.

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waveylines

I was told by a surgeon that they like ft3 to be higher in the range as the patient copes better with the op. My oncologist told me the same when I was undergoing treatment.

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DippyDame

Thank you for posting. PR4NOW

This has got me wondering.....

I have the Dio2 variant /homozygous and have RTH.

My health problems started 50 years a go... now aged 74

Both parents had heart problems....mother died suddenly aged 64 and father aged 69 after 10 years with said problems. That was 1974/75.

Neither were ever tested for thyroid issues so clearly were unaware of possible low T3. From what I've since learned, based on symptoms alone, I think my mother may have had undiagnosed hypo

My maternal grandmother was bed-ridden in her latter years the result of (I gather) Fibrositis now known as fibromyalgia. Was this the result of hypo/ low T3? Again, looking back her features and symptoms suggest this as a possibility. I do not have a record of her cause of death...might be an idea to obtain a copy of her death certificate!

Since my genetic test result proved homozygous did both my parents have conversion problems that were undiagnosed...and therefore high T4 and low T3 (as described in this article) which resulted in their heart problem We will never know now

Was low T3 the contributing factor....again we'll never know.

My grandson, only at the point of death, was diagnosed with a very rare heart defect which genetic tests showed was inherited from his father, my son. Then 8 weeks old, our little treasure is now a lively, healthy, intelligent 3 year old thanks to a brilliant cardiac surgeon. His quality of life post op had been very concerning. The NHS may fail thyroid patients but excels in other areas!

My husband and I now await the results of genetic tests to find out if either (or both ) of us is a carrier.....or if our son's mutation is de novo

I may be talking nonsense but this article raises a question regarding the possible effects that undiagnosed (genetic) poor conversion/low T3 can have not only in the individual but in subsequent generations.

The importance of T3 is overlooked - medics are very reluctant to carry out tests as we all know.

They so often rely on TSH alone which is nonsense.....as we all know.

This suggests that early routine testing of FT3 /a full thyroid panel should be mandatory at a set age (but what age?) The results would also create a base line for future reference and this may save a lot of people a lot of misery in later years

The closed minds amongst the "thyroid hierarchy" would no doubt reject any such suggestion.

So I guess I'm just whistling in the wind...

I'm not in the habit of discussing family matters other than in private but this article really struck a chord...hence this rant!

Thank you

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JGBH
JGBH
in reply to DippyDame

Hi DD

Your reply to the Low T3 Syndrome and your family history makes interesting reading. So, are you a bad converter yourself?

Is your genetic testing done privately or by NHS?

Am a poor converter, having no thyroid post operation in 1980 (papillary adenocarcinoma) and having only been prescribed Levothyroxine since then (had horrendous times since then, and having the most awful time now, can barely function and sleep nearly all day long) I wonder whether I should ask to have the genetic test done?

So pleased your precious grandson ‘s life was saved by a brilliant cardiologist.

Yes, the NHS has the few incredibly wonderful consultants, it’s a shame the majority of their endocrinologists are so useless!

It would be interesting to know what your husband and your own genetic test results are if that is not too intrusive.

Best wishes.

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DippyDame
DippyDame
in reply to JGBH

Yes, the Dio2 variant which I have causes poor conversion this ,research imdicates, results in an even higher level of poor conversion if inherited from both parents/homozygous. Me!

My conversion is very poor and the accumulative effect of that ( ie low T3 at cellular level, over decades) appears to have been the reason for the gradual decline of my health....until I could barely function.

My thyroid genetic test was done privately, the genetic test following my grandson's illness was NHS.....a referral from the hospital where he was treated.

We don't expect these results for about 3 months and don't know yet if they will decide to test only the known genetic depletion or the whole genome sequence.

Many of us here use private thyroid tests -

thyroiduk.org.uk/tuk/testin...

The Dio2 test may be worth doing, discovering I had the variant started me on a long thyroid journey of discovery....and improvement.

However finding out your Ft4 and FT3 levels would be an important start.

I'm not a medic but I might suggest that you are experiencing the symptoms of low T3. Have you had this tested? In their ignorance far too many medics rely on TSH and possibly FT4 tests while refusing the FT3 test which is all important. I'm surprised with your history that you are on LT4 monotheraphy.

Thank you, it is wonderful to have such a happy little boy after witnessing his life threatening experience....we had some very dark days now behind us. I'm afraid the GPs who saw him prior to his emergency operation missed every sign in the book.

If you have any recent test results post them along with ranges.....if not I suggest you have the full thyroid panel tested (see link) if that is possible, including nutrients that is.

Some well informed and experienced members will pop up and offer advice ....it sounds as if that would help because sadly medics are mostly clueless about thyroid disease and consequently leave us unwell!

Good luck....lots of people here able and willing to help

Best...

DD

PS....just looked at your results from a year ago you definately need to address your very low T3!

TSH: 0.50 miu/L (0.3 - 5.5)

Serum Free T4: 20.9 pmol/L (12 - 22)

Serum Free T3: 3 pmol/L (3.1 - 6.8) BELOW RANGE

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JGBH
JGBH
in reply to DippyDame

Thank you for a very helpful and prompt reply.

Are you now taking T3 as a monotherapy or T4/T3 combination? Is this prescribed by an NHS endo or do you source it privately? Also what brand T3 do you use? I couldn’t have Teva as can’t tolerate it even in Levothyroxine form.

I have recently seen another endo privately who, like you, could not understand why I had not been put on T3 straight after the thyroidectomy post cancer in 1980! Yet no one ever told me about this, nor explained anything. I, aged 34, didn’t know anything about thyroid problems plus no Google to explore. Also totally overwhelmed by fact I was told post operation I had cancer, might have 5 years to live... had 2 young daughters.... so overwhelming really. I never ever saw an endo!!! Appalling.

Am due to see the private endo again back in hospital in October with blood tests he should have received by then, plus a form he will send me, to fill in regarding Material Impact on day to day activities. That must be for him to submit to the CCG if (I hope) he prescribes a 3 month T4/T3 trial.

However, from many posts I have read T3 prescribed by NHS is nearly always Teva and 2 other brands containing fillers that can create problems. So what to do?

When you say you couldn’t function anymore, what were your symptoms? And how soon after adding T3 did you feel better? Are you feeling back to normal, sort of, now?

I feel like I am dying slowly but prematurely, can’t do anything and sleep most of the day! I am only a year younger than you, 73. Although old it’s not that old, yet I feel like someone who’s in her late 80s.... so depressing.

Enjoy your little grandson!

If you wish to reply by PM that is ok.

Thank you again.

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DippyDame
DippyDame
in reply to JGBH

Take heart you have now taken the first significant steps....

You may already have seen this symptom list -

thyroiduk.org.uk/tuk/about_...

I had probably half..

About 2 years ago in desperation I started researching thyroid issues, found TUK and kept reading, learning, taking advice and slowly I improved.

I moved from T4 (after 20 yrs) to T4/T3 which made no difference then discovered my conversion was very poor so started T3-only about a year ago. This was all done without the involvement of medics! I am much improved but certainly not as well as I would like I have been very cautious about increasing my dose and am now about to increase again...currently 106.25mcg.

It probably took 6 months before I felt much improvement but considering that my cellular T3 had been gradually depleting for decades I felt it would take a long time (if ever) to normalise. I still have pain and some fatigue - but no longer fall asleep mid sentence! - but most of my other symptoms have either eased or gone and I'm hoping for further improvement!

There is no quick fix (think headache/paracetamol) Recovery is a long slow process and needs patience and determination ...not easy when feeling unwell.

I'm noticing more and more people in our age group arriving here who find themselves struggling after years of shocking neglect....we are not old just badly neglected by the people who should know better.

It is a scandal of monstrous proportion.

Hopefully your endo, if s/he knows their stuff, will get you on track in October but if not this forum is a safe haven

Good luck

DD

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JGBH
JGBH
in reply to DippyDame

Many thanks DD for your encouraging words and most useful information. I will try to be patient but it’s the feeling of dying slowly prematurely that really scares me, especially when sleeping all the time. A feeling of “wasting “ one’s last years. Not being able to do small enjoyable things, to look forward to doing these things that give one hope and a sense of joy.

So it’s probably not a good idea to have combination therapy in my case but having only T3?

Does your heart cope with T3?

Thanks again.

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DippyDame
DippyDame
in reply to JGBH

As I was told when I started this journey aged 72....we are all different, with different needs and finding the solution may in the end be down to trial and error. The more you learn the more confident you will become....that is how many of us cope/move on. There are members here who know far more than any endocrinologist, the result of personal research and experience. They helped me.

T3 only is the last resort and personally I would (as I did) trial T4/T3 first. You will soon get a sense of whether or not it is working. If not I would try T3-only but your poor conversion may be the deciding factor. Listen to your body..

The heart needs T3, there is research to this effect which I don't have to hand.

My heart is fine and as part of my protocol I monitor my basic heart rate (around 75/85 bpm) on a daily basis and my BP weekly. I also check my temp several times a week to ensure it stays below 37C - mine is invariably closer to 36C. These checks should avoid overmedication.

I understand your concerns/anxiety these are shared by many here and importantly,such feelings can also be a symptom of undermedication!

It is never too late...there is light at the end of that horrible, scary, dark tunnel but be prepared for bumps along the way....I guess I would be deceiving you if I suggested otherwise.

I did it.....so can you!

Rant over!!

DD

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JGBH
JGBH
in reply to DippyDame

DD, many thanks again for such a most helpful, honest and encouraging reply.

It’s encouraging to see it is only 2 years ago since you started taking T3 and that you feel better. Will endeavour to remember that.

Which part of the country do you live in?

I live in North West Leicestershire, but close to Derby. Endos at the Derby Royal refused to see me because their policy and that of Derby CCG is to not prescribe T3!!! How shocking.

So went to see an endochrinologist from Leicester. I understand Leicester CCG hasn’t ban prescription of T3 yet, but that might change soon.

My GP told me they were going to do so soon, perhaps to dissuade me to see endo in Leicester, thinking if he prescribed T3 for a 3 month treatment then her surgery would have to pay for it afterwards should it work...

Seeing endo again under the NHS in mid-October, so fingers crossed.

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DippyDame
DippyDame
in reply to JGBH

I'm in Scotland and have been flying solo .....the one endo I saw concluded that I should maintain the status quo because it seemed to be working ....with the caveat that it wasn't what he would advise!

My GP has watched with interest from the sidelines because he can neither test nor prescribe T3

Madness doesn't cover it

Just posted re an article by Prof Tana Smith that may interest you

Keep us posted

Very best

In haste

DD

Reply
JGBH
JGBH
in reply to DippyDame

DD, thanks again! How shocking is this situation. Yet we cannot sue them for neglect.... they are so protected.

Can’t see the article... where do I find it?

Take care and best wishes.

Reply
DippyDame
DippyDame
in reply to JGBH

thyroidpatients.ca/2019/08/...

Sorry I should have added here

DD

1 like
Reply
JGBH
JGBH
in reply to DippyDame

Thank you. So much to take on...

Reply
prisoje
prisoje
in reply to DippyDame

I do complete thyroid panel every 2 months, all in range but my T3 is at the lower level,I have Hasimoto as well with antibodies 300 ,what kind of test I have to perform to see that coversion of T4 into T3 is not good.Is this panel enough,not much help from my endo. Taking eutyrox,not much help.Thanks

Reply
DippyDame
DippyDame
in reply to prisoje

Hello prisoje By comparing FT4 and FT3 results you can judge your conversion....

high FT4 and low FT3 is generally an indication of poor conversion.

Your low FT3 (in isolation) suggests a conversion problem... but not necessarily.

Poor conversion may be the consequence of low nutrient levels, have you had Vit B12, Vit D , Folate and ferritin checked , these should be at the top of the range....not just "in range".

Poor conversion can also be caused by a genetic variant ( Dio2 polymorphism) this may be of interest.

thyroiduk.org/tuk/testing/D...

What dose of Eutyrox/levothyroxine are you taking? It may be that all you need is an increase or perhaps the addition of a little T3

Difficult to say without either your test results or knowing your symptoms

Post any results you have and members will be able to advise further

Good luck

DD

Reply
prisoje
prisoje
in reply to DippyDame

Thank you DD,my results are as follows-Synlab lab.

TSH is 1.06- ref is 0.35 to 4.94

fT3 is 3.1- ref. is 2.6 to 5.7

fT4 is 10.9 -ref. is 9.0 to 19.1

My saliva kortizol is -morning get up 1.25-ref is 0.5 to 5.7

noon-1.71- ref is 0.2 to 3.6

afternoon 1.57 ref. is 0.2 to 2.4

before sleep 1.23 ref is 0.2 to 1.3

I am taking,to my endo rec. 0.25 eutyrox once a week a half of that dose other days,because she says TSH is a bit low.I feel awfull,inner shake and not sleeping.

Previously,I was taking 0.25 each day.

Please help,

Sylvia

Reply
DippyDame
DippyDame
in reply to prisoje

I'm unclear as to which units you are referring, please clarify 0.25 euthyrox. E.g. mcgs

I suggest you start a new post which includes this info and it will then be seen by more members than on here = more responses.

Your TSH is not low.

Your FT3 is far too low and it appears that your dose is also very low.

Based on your info/symptoms you appear to be undermedicated.

Sadly most endos have little knowledge of thyroid disease....crazy but true!

With that extra info well informed members will be able to help

1 like
Reply
helvella
helvellaAdministrator
in reply to prisoje

Do you mean 0.25 milligrams? That would be 250 micrograms - quite a high dose. Or is that 0.025 milligrams meaning 25 micrograms?

Reply
prisoje
prisoje
in reply to helvella

Just reading from the box,25 micrograms of euthyrox,that is 0.25 miligrams,correct,that is not high dose since she told me to take half of the pill daily,so I am under medicated than,considering my results.Thank you lovely ladies for all of your help,should I increase the dose than on my own or wait for the next exam. T3 she does not prescribe,what should I do,find another doctor...

Regards and good sleep to all,from Dubrovnik,Croatia

And my cortizol is a bit high in the evening,what do you think....went to the private lab for saliva test...simptoms inner trembling and problems with balance,I am 60,still working,wake up at 3.00am and no sleep and have to go to work in the morning.Feritin is 70,vitamin D 60,havenot tested B12 yet but will.Taking selenium,vit D3,zink,omega 3,vitamin c.

1 like
Reply
helvella
helvellaAdministrator
in reply to prisoje

No - 25 micrograms is NOT 0.25 milligrams, it is 0.025 milligrams.

You are right, though, 25 micrograms is a low dose. Half of that is too low to make sense. A very low dose of levothyroxine (which is what Euthyrox is) can reduce your OWN thyroid's output by at least what you are taking. Resulting in a reduction of the amount fo thyroid hormone you have available.

Reply
prisoje
prisoje
in reply to helvella

You are right,so this small does dose is even making me feel worse,I am definately increasing dose to what I was taking before until I find another-private endo.Thank you helvella for all of your help...

Reply
helvella
helvellaAdministrator
in reply to prisoje

Your question is way down on a thread and could very easily be missed. If you wish to ask anything else, and you are welcome to do so, I suggest you write a brand new post. More people will see it and, hopefully, reply.

Reply
silvisilvi
silvisilvi
in reply to helvella

Thank you so much,where do I have to click to write a new post as you suggest,I am having problems loging in.

Reply
helvella
helvellaAdministrator
in reply to silvisilvi

Can you see “What’s on your mind?” or “Write” towards the top of the page? Click on one on them and you can write a new post.

Reply
DippyDame
DippyDame
in reply to prisoje

Undermedicated!!

Before considering T3 I suggest you first need to increase your T4. level.

Your endo's dosing protocol is setting you up for failure...dose is too low.

T3 is a potent hormone and is used as a last resort.

Your nutrients also need attention, I'm going to tag SeasideSusie, if she is around she can offer expert nutritional advice. She may not see your post withn this thread..

I'm still learning!

Most of us here will understand your concerns...you have come to the right place.

Best...

DD

Reply
Mamapea1
Mamapea1
in reply to DippyDame

Exactly the same story with me and my mother, DD...she suffered the same problems...yet we were both diagnosed with various different disorders, unconnected, according to medics, to thyroid disorders. No one ever bothers to connect the dots😕. x

1 like
Reply
DippyDame
DippyDame
in reply to Mamapea1

I don't think they see the dots far less try to join them up!

I had my annual review at my GP surgery this morning....

Nurse, " will we do a thyroid test?"

Me, "No point, TSH and FT4 are pointless tests when I'm T3-only"

Nurse, "ok"

Ah! Your BP is down

Yes...T3

Oh your weight is down too

Yes, T3...and my cholesterol will be down too when the results come back from the lab.. Again, T3

Most of that failed to register....or caused fear of the unknown!

Or she decided that I am an old witch!!

I really don't think she saw these dots!

They will not accept/understand the value of FT3 and have now accepted that as far as thyroid issues are concerned I'll do my own thing.....but they don't want to know.

What has happened to enquiring minds....I was brought up to ask "why?"

Meanwhile so many patients are misdiagnosed, wrongly treated and suffering declining health.....

Why?

I guess many of us here have a fair idea!

Ranting again

DD

1 like
Reply
Thyroid17

Thankyou for sharing and offering possible insight for others.

Reply
diogenes

This paper discusses much of the problem about using FT3/4 and TSH diagnostically in critical and chronic illness: However, combined with T4 therapy or combination this makes for very difficult decisions as to what to do, if anything to change medication:

Thyroid Allostasis–Adaptive Responses of Thyrotropic Feedback Control to Conditions of Strain, Stress, and Developmental Programming

July 2017 Frontiers in Endocrinology 8:163

DOI: 10.3389/fendo.2017.00163

Apostolos Chatzitomaris, Rudolf Hoermann, John Edward M Midgley, Johannes W. Dietrich et al

1 like
Reply
JGBH
JGBH
in reply to diogenes

Diogenes, thank you for this comment.

This leaves me in a quandary...

Saw a private endo last week who told me he didn’t understand why I wasn’t prescribed T3 straight after my thyroidectomy back in 1980 (post operation it was discovered I had papillary carcinoadenoma) and was prescribed Levothyroxine since then. I did not even referred to an endo by surgeon afterwards, never saw one! No one told me there were alternatives to Levothyroxine! I did not know either then. I had very difficult times... but no GP referred me to any endo!

Situation is much worse now as I can barely function, sleep nearly the whole day.

I also have a complex medical history, having RA ( a year after thyroidectomy but only diagnosed in late 1980s), Sjögren’s, Raynauld’s, uveitis, etc.

So if I understand correctly from your statement, does this mean a trial combination T4/T3 would not be recommended for me? This is what the endo will prescribe when he sees me under the NHS in October. So what to do?

Incidentally, I had a copy of your latest published paper with me. Diplomatically (shame one has to take egos into consideration) I showed this to the endo who asked me if he could keep it!!! Couldn’t believe it. So hopefully he will learn something and act on it.

So thanks to you and your colleagues for this paper.

Looking forward to your reply and suggestions.

Best

1 like
Reply
diogenes
diogenes
in reply to JGBH

It all depends on the depth of your other illnesses. You clearly aren't critically ill, so that situation doesn't apply. But you are chronically ill. I would say that this wouldn't go against combined therapy, only that you have to be more careful in not overdoing the FT3. Maybe in your case a slightly lower FT3 would suffice compared with being perfectly fit. But still well within range. T4 doesn't really matter too much and neither does TSH.

1 like
Reply
JGBH
JGBH
in reply to diogenes

Thank you for your helpful and prompt reply.

Am due to have a Dobutamine echocardiogram at the end of September, so I hope that will be useful in making a decision regarding adding T3 to T4??

The endo suggested 75 meg Levothyroxine (reduced from 100 mcg) to 25 mcg T3 (T3 to be taken in 2 split doses during day).

I also understand most prescribed T3 brands by NHS are not the best, contacting some unpleasant fillers. Teva being one of them. I can’t tolerate Teva at all, even in Levothyroxine form. Do you know if it’s possible to obtain better T3 brands from NHS?

Thanks again.

Reply
diogenes
diogenes
in reply to JGBH

Seems to me that responses to T3 (and T4) brands are personal so all I can suggest is try until you find a compatible one.

Reply
JGBH
JGBH
in reply to diogenes

Thank you.

Reply
helvella
helvellaAdministrator

In case anyone wants to spend a few days reading about Low T3 Syndrome, this link, a PubMed search, might be of interest:

ncbi.nlm.nih.gov/pubmed/?te...

Certainly serves to point out that it is quite extensively reported and documented. Then largely ignored, it seems.

3 likes
Reply
waveylines

I think fear is instilled into is with regards to taking T3......& that can prevent us from taking it or worrying about it even if our symptoms, signs blood tests and response to levo indicate that T3 is much needed. Ive never had to tread the T3 only route but for some reason synthetic T3 gave me highs and lows in a way that ndt has never done. I remain curious over why that would be.....

I dont know if its still running but Paul Robinson ran a T3 only group on Facebook.......

Reply
PR4NOW
PR4NOW
in reply to waveylines

Paul Robinson's group is still running I believe. Prof Smith read Paul's books.

She mentions this in her latest post. PR

thyroidpatients.ca/2019/08/...

2 likes
Reply
waveylines

Thats good to hear PRNOW on both counts!! 😋😋😋 Yay!

This dogma of one route suits all really needs to be squashed! The very same problem occurs with B12 Deficiency/PA....... Makes me wonder how many chronic conditions are treated in an over simplified way.

3 likes
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