Suspected stopping of t3: Blood test today showed... - Thyroid UK

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Suspected stopping of t3

katherine107 profile image

Blood test today showed TSH is surpressed (0.03) and gp wants to see me about this. I know it's low as taking liothyrinine t3 . This has happened before where I lived before. I was prescribed T3 in 2012 by endocrinologist as can't tolerate thyroxine. Was very unwell on it. What do I say to gp as suspect they will want to stop it and prescribe thyroxine again. I do not see endocrinologist anymore. I feel so much better on T3. Can GP stop it at all?

94 Replies
SeasideSusie profile image
SeasideSusieAdministrator

My understanding is that GP cannot stop T3, you would need to be referred to endo and the endo makes the decision.

Have you changed surgeries? Your record must surely show low or suppressed T3 before now. GP needs to understand that taking T3 does that.

Yes changed surgeries. Hope you are right about endo has to change it.

Hi Katherine 107, if this has been sorted in the past- Tell them to look back at your medical records. You will be going over old ground and this is purely because they cannot be bothered to dig back far enough.

At our surgery you are lucky if they look back two entries. This means they miss loads of useful info and reinvent the wheel.

There will probably be a financial trigger to this more than a health one 🙄 T3 medication more expensive than T4 medication.

Always question their motives.

shaws profile image
shawsAdministrator

Did you allow a 24 hour gap between your last dose and the test?

GPs get a bit worried if our TSH is suppressed - even though we might feel better when it is.

katherine107 profile image
katherine107 in reply to shaws

Yes I did

SeasideSusie profile image
SeasideSusieAdministrator in reply to katherine107

24 hour gap is for Levo.

For T3 (and NDT) the gap is 8-12 hours from last dose to blood test, this is because T3 has a short half life of 24 hours and we want a measure of the normal circulating amount of hormone which we're more likely to get with an 8-12 hour gap, 24 hours is too long for T3.

SlowDragon profile image
SlowDragonAdministrator

Email Thyroid UK for list of recommend thyroid specialist endocrinologists who will prescribe T3

...NHS and Private

tukadmin@thyroiduk.org

Vast majority of endocrinologists are diabetes specialists and would be unlikely to be pro T3

A GP must refer you back to endocrinologist before changing your thyroid medication

You might need to consider private consultation and private prescription…..if it gets difficult

I see the endocrinologist once a year. Due again in march next year.

SlowDragon profile image
SlowDragonAdministrator in reply to katherine107

Then GP can’t change anything

Endocrinologist is the specialist

SlowDragon profile image
SlowDragonAdministrator in reply to katherine107

In opening post you said ….

“I do not see endocrinologist anymore.”

Obviously if you still have same endo that’s good

It will be different one next march as original has left but I wanted to know if gp cancel stop my prescription in surgery before I see endocrinologist

Level of FT3 is that what is important. THS has to be proven to show reality. In that case it is acceptable for that pacients who are only on T4 medicine. But many pacients don't take T4 24 before test. Why? Because it is not so rare that T4 dose is lowered and they become very bad, sluggish. But symptoms are that caunt a lot. And fine tuning of dose has to be find out by symptoms.

If You feel good, You don't have symptoms of hyperthyroidisem, tell doctor that You are OK with your medicine. If doctor would insist in lowering T3, demand urgent appointment to endocrinologist.

T3 is short living and is ussually prescribed to be tacken twice a day. Not late in the afternoon or in the evening. Then it is time to sleep.

shaws profile image
shawsAdministrator in reply to Myro

One daily dose of T3 can last between one to three days. As explained by this expert who was also an Adviser to TUK before his demise due to a bad fall and caused brain damage.

Dr. Lowe's line of metabolism research over the last twenty years led to two significant outcomes: First was the solution to the problem of fibromyalgia, showing that its main underlying mechanism is too little thyroid hormone regulation, often complicated by nutritional deficiencies, low physical fitness, an unwholesome diet, blood sugar dysregulation, and the use of metabolism-impeding drugs; second was his creation and coining of “metabolic rehabilitation,” a high-precision, data-driven clinical approach for helping patients to improve or recover. His hope is that his interaction within the community of international scientists through Index Copernicus Scientists will lead to researchers in other countries becoming involved in the line of metabolic research he began and continues.

The 62nd edition of the premier biographical source Marquis Who's Who in American was published in 2008. (For a history and description and Marquis, and its committee's process of selecting individuals to include, see Wikipedia's article on Marquis.) Dr. Lowe was selected by the Marquis committee to be included. Marquis, which began publication in 1899, chronicles the lives and careers of men and women their committee considers noteworthy Americans. (Dr. Lowe's comments on his inclusion in Marquis.)

web.archive.org/web/2010111...

He stated that one daily dose of T3 lasted between one to three days. I took one daily dose, took no T3 on day two or day three and I still felt fine and not symptomatic. I take my one daily dose when I awake and wait an hour before I eat. I no longer have any clinical symtoms and I feel well.

Myro profile image
Myro in reply to shaws

Thank You for information and experience. I have find out myself that many things are connected. As You write. It looks that there are different symptoms or causes or even diagnoses connected or in relation with T3. Fibromyalgia, hyperinsulinemia, even psoriasis and arthritis, neuropathia ... I'm curious what are your test numbers for FT3. Deficiency of certain minerals, vitamins or no proper absorption of them can be cause - reason for many metabolic troubles or body malfunctions. I believe that there are many sort of truth. Noone wrong. I didn't know that T3 can help for 3 days. In certain cases, I believe that in some cases 2x a day works. Thank You

tattybogle profile image
tattybogle in reply to Myro

T3 is short living and is ussually prescribed to be tacken twice a day. Not late in the afternoon or in the evening. Then it is time to sleep.

this doesn't apply to everyone.... some people on here have found they sleep better if they take some of their T3 dose in the evening.

Lovecake profile image
Lovecake in reply to tattybogle

Yes, that’s me! 😴I was taking 1 dose an hour before lunch and one dose when I wake in the night. I found I sleep well (usually) after taking the T3.

My endo says many of his patients take their T3 in 3 doses throughout the day. (He’s on the Thyroid UK list).

I take mine in 3 doses stretched from early morning to bedtime as it helps me sleep

Sanjita123 profile image
Sanjita123 in reply to Lovecake

Hi love cake.. I have the thyroid uk list, could you DM me with the endo you chose? Many thanks

shaws profile image
shawsAdministrator in reply to tattybogle

Dr L took his in the midde of the night when he awoke to go to the toilet. Therefore, nothing interfered with his uptake.

FancyPants54 profile image
FancyPants54 in reply to shaws

shaws how did you find out one dose was good for you? How did you go from 2 or 3 doses down to the 1?

I've just tried 3 doses a day again on advice of endo. I don't like it. I'm now back on 2, which is better, but I'd love to be able to do it all in the morning eventually.

SlowDragon profile image
SlowDragonAdministrator in reply to FancyPants54

I have recently changed from taking higher dose in morning, to taking higher dose at bedtime

Was taking 10mcg at 7am, 5mcg at 3pm and 5mcg at 11pm

Now taking 5mcg at 6am, 5mcg at 3pm and 10mcg at 11pm ….

So far …so good

Considering trying taking it all at bedtime …might up bedtime to 15mcg first

And drop afternoon dose

BrynGlas profile image
BrynGlas in reply to SlowDragon

I take the 3 x T3 x 25mcg daily but the only thing is fitting my Folate into my day, 4 hours before T3 and 4 hours after taking Folate I take my T3. Sometimes it doesn't work out and I keep some slices of black pudding in the freezer for those times.

But black pudding has barley in it, which I adore, but how gluten free is barley ? I keep meaning to look, but I also keep forgetting to look! LoL

SlowDragon profile image
SlowDragonAdministrator in reply to BrynGlas

Barely contains gluten

Folate only needs to be two hours away from levothyroxine or T3

Or did you mean iron supplements….ferrous fumerate or similar…that does need to be four hours away

BrynGlas profile image
BrynGlas in reply to SlowDragon

Methyl Folate 1,000mcg

SlowDragon profile image
SlowDragonAdministrator in reply to BrynGlas

That’s a rather large dose folate

Have you tried a vitamin B complex rather than just separate folate

BrynGlas profile image
BrynGlas in reply to SlowDragon

Oh, I got the wrong end of the stick then did I?? LoL Nothing unusual for me. How you all put up with me I have no idea! ;-))

SlowDragon profile image
SlowDragonAdministrator in reply to BrynGlas

You can buy gluten free black pudding

BrynGlas profile image
BrynGlas in reply to SlowDragon

I can't even buy a free range chicken here, and neither black pudding nor liver is for sale locally.

I love pate too, but the one and only patè in the Co op looked very anaemic to me. I used to buy my own chicken livers to make it myself, but Morrisons stopped selling them and I have never seen them for sale anywhere else as yet.

SlowDragon profile image
SlowDragonAdministrator in reply to BrynGlas

Buy online?

pipersfarm.com/products/fre...

thedorsetmeatcompany.co.uk/...

SeasideSusie profile image
SeasideSusieAdministrator in reply to BrynGlas

BrynGlas

Are you still in Wales at the moment? My local butcher (which is actually about 5 miles away) sells chicken livers, he keeps them frozen. Have you tried your local butcher?

Yes I am SSusie, no idea when I will be actually moving out.

There is a butcher in Caernarfon. I have to confess I don't go in there - because I went once many years ago and they were very rude to me, so I never set foot in the place again.

There is another one in Llanberis though, I will try in there!

Thanks very much SSusie

shaws profile image
shawsAdministrator in reply to FancyPants54

I read Dr John Lowe's advice, he was a scientist, doctor and exper on T3 as he himself took T3. He stated once daily as it enabled all of our T3 receptor cells to be saturated and then it sent out 'waves' throughout the day. He took his when he awoke in the middle of the night. He was also an Adviser to TUK.

I have stated previously that I take one daily dose of T3 with one glass of water when I awake and wait an hour before I eat.

I think if we split our dose it would be quite difficult to ensure our stomach was completely empty as I assume food would interfere with the uptake of T3. Besides our whole day will be taken up by splitting doses and would I remember to leave a big enough space between food and T3.

I will state I'm not medically qualified but, like a majority on this forum, many GPs don't seem to be educated on how to diagnose a person who has a dysfunctional thyroid gland without blood tests. Our older doctors (many now retired) knew all of the signs/symptoms as there were no blood tests.

I have recently reduced my T3 dose and still feel fine, symptom-free and well.

FancyPants54 profile image
FancyPants54 in reply to shaws

Yes, I know that but it wasn’t my question. I asked how you managed to get to taking it all at once. Did you begin your T3 journey that way or did you start with split doses? If you started with split doses, how did you make the change to 1 dose. Slowly and gradually or all at once?

I was trying to work a 2 dose regime down to 1 dose myself but then my dose was increased and I ended up with it split again to get used to the amount. I’m currently on 35mcg a day. I’d love to take it all at once but think it would be a shock to the system. That’s why I’m asking how you got there.

shaws profile image
shawsAdministrator in reply to FancyPants54

No, I have never taken split doses as I had read Dr Lowe's information before I began taking it.

Initially it was a small dose of T3 added to T4.

I then stopped T4 and took T3 alone. T4 always gave me awful palpitations until I stopped taking it. I had many overnight palpitations and the cardiologist couldn't explain why and was considering putting an implant in my heart to 'see what was going on'. Just about the same time I took T3 only and palps ceased. Heartbeat became normal.

FancyPants54 profile image
FancyPants54 in reply to shaws

I would love to take it all when I get up and be done with it. But when I moved my dose up to 20 from 15 mcg in the morning I felt a bit anxious a couple of hours later for a few days. So I couldn’t just whack the afternoon 15mcg into the morning in one go.

I will hold off experimenting for now though. I’m finally feeling a tiny bit better in the mornings on this dose. It wears off around 2:30 though and my afternoon dose doesn’t seem to help, in fact it makes me more tired for a while. So much experimentation, so little positive results!

Redlester profile image
Redlester in reply to shaws

I tried the dose splitting Shaws but found that A) it didn't work well for me and B) the whole day revolved around taking T3 and it was very hard to time doses and meals etc. So I went to the single daily dose first thing in the morning as per John Lowe's recommendation - getting receptor cells saturated which I didn't feel was ever happening on split dosing. My endo was terrified when I told him I was doing this - they just don't get it - I was tempted to mention John Lowe's research to him but decided against it. It is very frustrating to know that there is excellent research out there which seems to be verboten as far as the NHS is concerned which could help so many people if only endos were educated about it.

shaws profile image
shawsAdministrator in reply to FancyPants54

We really want convenience as we will be taking thyroid hormone replacements for our whole lifetime and it has to become an automatic routine that doesn't interfere with our 'lives'.

Endocrinologists aren't scientists and Dr John Lowe was a scientist/researcher/doctor and due to some family happening when he was young he studied to become a doctor/researcher/expert on the use of thyroid hormones, T3 in particular as he stated that levo became the No.1 in the USA due to doctors being paid to dispense levothyroxine and not NDTs (NDTs being the original replacements from 1892 onwards and is still popular today). It is a pity that the NHS has withdrawn this even though it has shown to be safe since its first use. He took T3 himself in the middle of the night when he awoke to go to the toilet. So definitely nothing intefered with his dose.

web.archive.org/web/2010103...

web.archive.org/web/2010103...

Our stomach has to be empty as food could interfere with its uptake.

This is an excerpt from Dr John Lowe:-

Dr. Lowe: I am comfortable advising physicians on the use of T3 because of my knowledge of the hormone and my experience (both clinical and experimental) with its use. Moreover, my book The Metabolic Treatment of Fibromyalgia is a comprehensive text on thyroidology and contains more scientific information on the use of T3 than any other book ever written. In contrast, most conventional endocrinologists have little to no knowledge of T3. Also, they have little to no clinical experience with its use. Therefore, for them to represent their opinions about T3 as expert advice is a pretense and raises ethical questions.

Conventional endocrinologists' lack of knowledge about T3 results from conduct that is clearly unscientific—that is, overall, they accepted without question mandates passed down to them by old guard thyroid specialists, much as loyal military personnel obediently and unquestioningly comply with orders from higher command. The particular mandate of conventional thyroid specialists I refer to here is this: "The only thyroid hormone preparation a doctor should ever prescribe is T4 (thyroxine)."

and

Your doctor’s false belief about the use of T3 isn’t unusual. Many doctors believe that T3 is dangerous. When pharmacists fill prescriptions for Cytomel, however, they often give patients a leaflet that makes the safety of T3 perfectly clear. Verbatim, the leaflet reads: "NO COMMON SIDE EFFECTS HAVE BEEN REPORTED with the proper use of this medicine." (Medi-Span, Inc.: Database Version 97.2. Data © 1997.) When used with reasonable precaution, T3 is perfectly safe.

Doctors commonly prescribe a variety of drugs to control hypothyroid symptoms that continue despite patients’ use of T4. In stark contrast to T3, most of these drugs have long lists of potentially harmful effects. The safety of T3 use starkly contrasts with the risks of using the other drugs. Since this fact is well documented in the medical literature, I find it baffling that so many doctors falsely believe just the opposite.

BrynGlas profile image
BrynGlas in reply to shaws

Yes shaws I try to wake at about 4am for my first dose, but sometimes I sleep through my alarm! I used to take Levo at that time too until I stopped it altogether.

BrynGlas profile image
BrynGlas in reply to tattybogle

Hi tattybogle, I agree with you.

I take a dose of T3 as I get into bed and I sleep fine usually, though I do have problems sleeping and have for years. But T3 doesn't make it worse, probably better.

We are all different and we all need to find our own way.

I take T3 only, 1 x 25mcg 3 times a day. And sometimes I need a little more, I carry a supply in my handbag for if I need it when I'm out. If I feel a bit shaky, or I might get a headache, or even a few palpitations. I will take 12.5 mcg of Tiromel, but it rarely happens, fortunately.

shaws profile image
shawsAdministrator in reply to BrynGlas

Dr Lowe took his once daily dose of150 mcg of T3 when he awoke in the middle of the night. He stated that all of the T3 receptor cells had to be 'saturated' and that the one dose will last between one to three days. I trialled this - took one dose on day 1, took none on day two and day three and T3 did last and I had no symptoms. I started T3 again on the 4th day.

My THS has been suppressed for years as I’m on T3 .. every time I have a blood test I get a frantic phone call saying my THS is suppressed and my T4 is extremely low. I had such a phone call last week from the nurse, “your THS is suppressed, you t4 is only 5.1” the doctor will need to speak to you, my reply “my THS has been suppressed for years due to me taking T3 my endo has written to the surgery explaining that this is perfectly normal for people taking T3 only. Also I don’t take t4 so that is going to be low” what was my T3 number? Her reply “I’m not qualified to give you that information” I just started laughing, it was that or just start to cry!! I get these phone calls after every blood test😳

I will say this to gp. She has written letter saying due to this you will have to replace with thyroxin

shaws profile image
shawsAdministrator in reply to katherine107

I am sorry for you and the GP shouldn't change your medication or threaten you. She is afraid she will get reprimanded by other doctors who are also ignorant of how thyroid hormones work in our bodies.

I was so, very, very unwell on levothyroxine and never improved one iota. It was hell on earth - not just for me but my husband too as he had to deal with me when my palpitations were so very severe - the majority in the middle of the night, when he had to get ice-bags from freezer so I could put on my neck to try to reduce palps whilst I sipped ice-cold water. A phase I never want to go through again.

tattybogle profile image
tattybogle in reply to Pixielula

I'm sure you know , but just in case it's not a typo .. it's not THS,

it's TSH (Thyroid Stimulating Hormone)

Pixielula profile image
Pixielula in reply to tattybogle

Oops sorry B12 shot is due getting all my words mixed up today!!!

tattybogle profile image
tattybogle in reply to Pixielula

:)

They really haven’t a clue . 😂I was having a blood test the other day and mentioned the biotin being an interference in blood test results.

It’s written on the lab sheets that we get back through the NHS. The nurse didn’t know anything about it!

I just feel I want to take information sheets into the surgery every time I have to go there so that I can try and educate them on what I have gleaned so far re the thyroid - Much from this amazing site. That sounds awfully arrogant, but I am increasingly finding I know more than they do and that is really not the way it should be at all - I would be much more comfortable if it were the other way around. Actually probably no, not now - because once you become your own health advocate that’s it really, there’s no crossing back.

I tried that with my GP, but he totally blanked me afterwards.

He had been decreasing my Levo after he took over the surgery each time my TSH and T4 was raised. He never checked my results again until the end of the year, the only blood test I ever had each year was just before or just after Christmas, even if there were changes in Levo dose.

I had learned more about thyroid treatment by the last blood test and he again said I was over medicated and told me to drop down from 150mcg Levo to 125mcg but I totally refused and told him exactly why I knew I was not over medicated.

I also told him I was going to go onto T3 after that blood test, which he didn't like, telling me it was an illegal drug! LoL

He hasn't called me for a blood test since and that was in around September last year! They generally can't stand us knowing more than they do! Especially the male GP's in my experience.

Yes BrynGlas

The only way to stay well is to be our own advocates.

Trying to keep them on side by massaging egos does only that. Thankfully, I’ve managed to get my last two telecons with GPs who were prepared to hear my argument that whilst I might be in range - I was not well and we had not reached an optimal dose yet. I also used the guide dosing of 1.6 µg per kilogram of levothyroxine as a justification. We had reasonable and good discussions, but I had given them so much info and data - I think if only for that they wanted to get the consultation over and done 😂👍

I’ve gone to the trouble of developing a spreadsheet that had all of my blood tests in date order, normalised to percentages within range and had even plotted free T3 on a graph. Then the last GP I spoke to said “I tend to go more on symptoms”!? And I told him you have no idea how glad I am to hear you say that. I think I will try and speak to that doctor again as he does seem to have an idea. Too many in that surgery seem to be at the other end of the scale- NOT a clue

I am stuck with a surgery with only 1 GP and an occasional part timer.

shaws profile image
shawsAdministrator in reply to BrynGlas

If your GP was low in T3, his brain or heart wouldn't function normally. Both have the most T3 receptor cells.

BrynGlas profile image
BrynGlas in reply to shaws

Yes shaws, but he doesn't seem to think that T3 is anything but an illegal drug, I have no idea why we can have every synthetic hormone under the sun legally, but he thinks that T3 is illegal.

I did suggest in an email reply to him, that he should then bring in the drug squad!

Stupid man.

shaws profile image
shawsAdministrator in reply to BrynGlas

With the above statement "I also told him I was going to go onto T3 after that blood test, which he didn't like, telling me it was an illegal drug! "

Is he aware that his own body also produces the 'illegal drug' i.e. T3 (liothyronine) and it is the Active Thyroid Hormone that our brain and heart need as they have the most T3 receptor cells. All of the T3 receptor cells need T3 in order for bodies to function as normal, i.e. the patient feels well with no clinical symptoms.

BrynGlas profile image
BrynGlas in reply to shaws

shaws I have wondered that many times.

But if he could keep reducing my Levo dose because he was convinced that high TSH meant that I was over medicated, he knows nothing at all.

And I was never given a blood test 6 weeks or so after my dose was reduced ever. I had never had a reduction in Levo until he came along.

Thankfully I am moving out of Wales soon, then I will try to find an Endo through the NHS. After over a year on T3, they can't tell me that it wouldn't work now can they ?

shaws profile image
shawsAdministrator in reply to BrynGlas

I think many of them have been brain-washed to believe that levo alone will give a recovery for the patient. Not for me it didn't/wouldn't. How unwell I was after being diagnosed when TSH was 100 and phoned by GP to tell me 'there's nothing wrong and your blood results are fine'.

I am only better due to having internet access and finding Thyroiduk.org.uk who restored my health.

BrynGlas profile image
BrynGlas in reply to shaws

I don't know anyone who takes Levo and is well on it! But apparently there are a few! LoL

shaws profile image
shawsAdministrator in reply to BrynGlas

Yes there definitely a number of people who're fine on levo and they wont be searching the internet for advice.

BrynGlas profile image
BrynGlas in reply to shaws

Oh Lord this is another long one, sorry in advance.

Of course I understand that shaws, but I was on Levo for very many years, over 20 years in fact. I was never happy, I was constantly in and out of the surgery dozens of times because I was so upset that those little white pills absolutely did nothing for me at all. I joined BTA ( have I got that right?).

In the end my GP - not the one at have now - told me that I could be a patient who couldn't be helped with Levo and that there was no other option for me!

I was driving my GP, husband, family & the whole darned world to distraction. It ended my marriage finally, but before I got that far, I had to tell myself I just had to give up and ignore the issue! And that was what I did, I was good at it too.

I had several attempts of suicide, I had to have my wedding dress enlarged, because I gained so much weight it didn't fit, I gradually grew to well over 15st, I was on anti depressants, couldn't sleep, etc etc. Antidepressants, you name it, I went through it and honestly no one put anything down to Levo, least of all me, because I had honestly put it totally out of my mind. I took the tablets and went for the blood tests but everything that went wrong I just put it down to be me. I was taking Levo etc, going through the motions.

I honestly forgot about hypothyroid and when you sit in your GP's surgery and she tells you that you have to accept the fact that you are your own worst enemy, stop eating cream cakes whilst watching TV, calories in have to be less than calories out., etc etc etc well, it hurts a lot.

Then I got this idiot GP who I have now, who started reducing my Levo from 200 mcg to in the end to 125 mcg, he reduced it every year when I had a blood test. He never tested me after he had reduced Levo until the next year's test was due.

I was in Intensive care for 2 weeks in June 2018 after another attempt at suicide. No one twigged what was going on. Not even me. I had done exactly as I had been told, I was tested each year. I just thought that in 1999 my life had changed and that was all there was to it, I had to put up with it!

It wasn't until 2019, after I finally split with my husband at the end of 2018, that I decided to sort it out if it killed me, because I would rather die than live that way for another 20 years.

I thought I would start my search with my thyroid problem and joined TUK.

It seemed the best to start there, though I really didn't have the foggiest idea that there was actually something wrong with my thyroid treatment, I honestly didn't. I knew that I had not been right since I was diagnosed in the late 90's my life had not been a life at all. And I had obeyed all the rules, took the meds etc etc, so it must be just me!

With the help of TUK and you girls on here, I soon realised that it wasn't just me, it was the totally useless treatment that I had been given that had made my life a living hell.

Since I started taking T3 having found it myself and paid for it myself , I have been 100 times better. I do actually have a life now.

But I know that there are people out there who are going through what I went through on Levo alone. And how I would like to get through to them that there is another way. I lost over 20 years of my life to rubbish treatment from the Welsh NHS and their GP's who were paid to treat me. They need to know that I will be fighting back.

Sorry it was so long.

shaws profile image
shawsAdministrator in reply to BrynGlas

This is such a stupid, stupid declaration from your GP. No need to apologise about the length of your post.

" told me that I could be a patient who couldn't be helped with Levo and that there was no other option for me!

All he has done is made all of us on this forum know for sure he has been badly trained whereas all of our older doctors (all retired now) only prescribed NDTs (natural dessicated thyroid hormones) and dose was gradually increased until we were symptom-free. NDTs contain all of the hormones a healthy thyroid gland would do, as it is made from animals' thyroid glands.

I have read the Last Statement from a woman who could no longer go along this path of taking levo and not improving. She committed suicide and wrote a Last Testament for the coroner to read. She probably hoped it would be published or change the attitude of the 'professionals' and allow hypothyroid patients to get option offered but I doubt it made any difference.

T3 is my body's preference too. Our body dictates what it likes or doesn't and it is not the patient who makes the decision but the doctors who haven't a clue. I had to diagnose myself and, like many on the forum, had never heard of hypothyroidism previously but I doubt many, many doctors are the same - have no clue of clinical symptoms nor anything about hypothyroidism. One doctor told me that T3 converted to T4. My response 'I'm sorry doctor that is not correct it is T4 that should convert to sufficient T3.

I am well on T3 and have been fortunate to have it reinstated.

BrynGlas profile image
BrynGlas in reply to shaws

Well, I can understand why she did that, though I wish she had been given a life back before she got that far. I wonder what her GP's - as well as the NHS and Coroner - thought of her last statement, coming from a lady who was totally failed.

I have been there a few times and I was very unhappy to be alive when I finally woke up in ICU in 2018, but I am hoping I won't feel that way again, now that I have Tiromel.

The poor woman, it is absolutely horrifying.

Every GP I have had here in Wales (and I was diagnosed here in 1999, but had also had a blood test in 1997 which was negative) has been the same about symptoms, not one put any of them down to Hypothyroidism, though I didn't ask them if hypothyroid was the cause myself.

I had had increases in Levo from every GP though, until the idiot GP who arrived here a few years ago and who decided my TSH was too high and I was over medicated. I think that happened at every blood test until last year when he said again that I was over medicated and wanted to decrease it again, but I knew better and I refused to reduce it. And I told him exactly why TSH was high and told him I had bought and was going to take T3 and that was when I was told that it was an illegal drug and I was not say 'T3' to him again.

They are not interested and that took some getting used to because if you can't trust your GP who can you trust? You have nowhere to go.

shaws profile image
shawsAdministrator in reply to BrynGlas

You are correct because if we aren't diagnosed we distrust doctors after we are finally diagnosed. When diagnosed they seem to take more notice of the TSH alone and adjust meds according to the TSH.

If doctors cannot diagnose someone who has a very high TSH and tells the person 'there's nothing wrong with you" without testing thyroid hormones" are very badly trained.

None of the ones I saw could diagnose me at all and gave me different diagnosis and even an operation "to remove a web". After the first appointment (after op) he then told me I didn't have a web but neither did he diagnose hypo. I assumed months later that the 'swelling' was the thyroid gland.

It was a first-aider who suggested I get my thyroid hormones tested. He was right.

Most GPs do not understand how T3 works, I have had a GP who had never even heard of it! So they see the suppressed THS and panic. Thinking you will get atrial fibrillation and it will be there fault for over supplementing. Most GPs would prefer to keep you under supplemented with a higher THS than risk over supplementing. The fact that you then feel like crap doesn’t seem to bother them. That’s what happens when you medicate from blood test rather than from symptoms…… this is the world we live in now!

Alanna012 profile image
Alanna012 in reply to Pixielula

One of my GPs said exactly that 'You'll get Afib!' if she prescribed a mere 25mcg more levo (only taking 100mcg with a TSH of 4.9 at that time) So you're completely right that this is the reasoning (and the real fear) for many GPs.

Pixielula profile image
Pixielula in reply to Alanna012

Half of my family members have hypothyroidism and I have seen it happen, but most of them are not pro active and believe the doctors know best! my mums THS they kept around the 3-4 mark and my brothers is kept around 2-3 if it goes lower they reduce his meds. My two daughters I keep a very close eye on. One listens to me the other one not so much. It’s tough when people won’t take your advice but you can only do what you can do!!!

"You can lead a horse to water, but you can't make it drink" - and all that.

shaws profile image
shawsAdministrator in reply to Alanna012

I have been taking T3 alone for several years. The most severe palpitations I had were caused by T4 only and it was also mainly in the middle of the night, and to try to reduce palps I had to wrap around my neck an ice-cold towel and sip ice-cold water. When I stopped T4 palps ceased.

Hylda2 profile image
Hylda2 in reply to Alanna012

My TSH is usually 0.02, my T4 122% of range and my T3 22%. My cardiologist is not bothered. I have AF. Have recently imported some T3 so will be very interested when I do a Medichecks blood test on Monday

SlowDragon profile image
SlowDragonAdministrator in reply to Hylda2

Af can be exacerbated by LOW ft3

FancyPants54 profile image
FancyPants54 in reply to Hylda2

Gosh that T3 is low Hylda2, you are a poor converter for sure. You need T3. The combo of AF and hypothyroid freaks them out. I think we pretty much have to go it alone in that situation.

Hylda2 profile image
Hylda2 in reply to FancyPants54

Had a chat with Dr when he of course wanted me to lower Levo but I refused. I said I could do with some T3 but we agreed I wouldn’t get on NHS so have tried some from abroad. I’ll tell him later!!

BrynGlas profile image
BrynGlas in reply to Hylda2

Oh hope you get FT3 raised some then

They don't understand thyroid or AF! They have no clue that low T3 can cause AF. They only think too much causes it. But they never test T3 so they don't know what the levels are when they make their TSH obsessed proclamations.

BrynGlas profile image
BrynGlas in reply to Pixielula

Exactly!

It is also possible that it may be just the excuse the practice needs to stop prescribing the ridiculously expensive T3!

BrynGlas profile image
BrynGlas in reply to Pixielula

But it is no longer ridiculously expensive and it is VERY reasonable to buy online, at least my Tiromel is.

Pixielula profile image
Pixielula in reply to BrynGlas

Hi brynglas Maybe I have I missed something here! Has the cost of prescription T3 been reduced drastically? I know you can buy T3 cheap if you get it from abroad. €1.23 in Greece. But I was talking about the cost the NHS pays for the prescription T3. They sometimes try to find a excuse to stop prescribing and put us back on levothyroxine. Being prescribed T3 and buying your own are two different scenarios, if NHS T3 was as cheap as you can get it abroad I don’t think we would have any problems at all getting it prescribed …

tattybogle profile image
tattybogle in reply to Pixielula

NHS cost has reduced , it had recently fallen to about £111 , and has now lowered again to just under £100 ... obviously still way too expensive compared to the real cost of producing it , but it has come down a lot from it's highest price of around £240 (ish) since the CMA have been on their case for artificially raising the price charged to NHS.

Pixielula profile image
Pixielula in reply to tattybogle

£100 a packet still makes it prohibitive! But of course it’s much better than it was, I still don’t think GPs will be rushing out to prescribe it until the costs are comparable with levo. When I lived in Somerset my T3 was withdrawn based solely on the cost. I appealed the CCG’s decision but there was no way no how they would prescribe it. I went down the route of buying over the internet. I paid for tablets that never arrived! I paid for tablets that were totally ineffective! And I paid for T3 that was branded and effective. Sometimes I found a good supplier but then that source dried up and I would have to look for a new supplier, It was two years of stress… luckily now I get it prescribed again. My brothers T3 was withdrawn due to the price and they put him back on levo and he has never been able to get his T3 prescription reinstated. Even though he is constantly exhausted has insomnia and depression, and terrible headaches the reason they put him on T3 to start with…..

tattybogle profile image
tattybogle in reply to Pixielula

Totally agree , although i doubt they'll ever be happy to prescribe it even it cost them exactly the same as Levo , which it never will ... i wouldn't be surprised it if ends up around £50 to NHS, but i doubt it will ever go lower than that. Can't see these drug companies saying 'truth is , we were being far too greedy before, so now well just charge you what it really costs'

BrynGlas profile image
BrynGlas in reply to Pixielula

There was a big court case pretty recently and in the High Court, the Pharmas were fined Millions of pounds and the cost came down a lot, ie the price that the NHS has to pay to the greedy companies.

I buy my Tiromel through a Bulgarian based company. It isn't as cheap as it appears to be in Greece, but affordable. I started taking it in around September last year.

Pixielula profile image
Pixielula in reply to BrynGlas

Yes I read about the fines someone had put a link up on the site…. I also purchased tiromel from someone on this site it was around £22 for 100 tablets… I try to keep a 12 month back up supply incase my prescription gets stopped again. But one of my daughters is a poor converter so I have been giving her some…….

BrynGlas profile image
BrynGlas in reply to Pixielula

Best buy yourself maybe? I pay £11 a pack T3 x 25mcg and there are 100 in the box. I ordered 7 packs and I paid just over £85 including shipping of £12.

PM me if you want more info.

If it is your gp who is prescribing your medication then it’s your gp you have to convince to let you stay on T3. Perhaps explain that you are feeling better on T3 and would it help to be referred to the endocrinologist. Then get the endocrinologist to write something that will stop the gp worrying.

BrynGlas profile image
BrynGlas in reply to Hypohappy

I don't think it is quite as easy as that, but I agree with you. It should be as easy as that.

SeasideSusie profile image
SeasideSusieAdministrator

katherine107

Here is the evidence from RMOC (Regional Medicines Optimisation Committees which were established in 2016 to optimise the use of medicines for the benefit of patients and the NHS):

sps.nhs.uk/wp-content/uploa...

On page 3:

The prescribing of liothyronine is only supported if initiated by, or considered appropriate following a review by, an NHS consultant endocrinologist. The withdrawal or adjustment of liothyronine treatment should also only be undertaken by, or with the oversight of, an NHS consultant endocrinologist. Where General Practitioners (GPs) are involved in such treatment changes this should be with NHS consultant endocrinologist support. This advice applies to both liothyronine monotherapy and combination therapy with levothyroxine.

Thankyou for this

YESSSSS!!!!!!!! Thank you SS.

shaws profile image
shawsAdministrator in reply to SeasideSusie

It's a pity that the majority of Endocrinologists will not prescribe T3 due to the increase in price.

I´m not in the UK so cannot comment on how things work there but, from a general point of view, T3 tends to lower TSH or even suppress it. So what can any doctor do about that? If you do well on T3 and they want you to lower it, you will likely feel worse. It´s unlikely you will feel well on any dose of T3 that keeps your TSH in range. A suppressed TSH means the pituitary gland is no longer trying to get the thyroid gland to produce hormones. And why would it since you are on thyroid hormone replacement? The pituitary gland senses there is no need for more thyroid hormone so stops producing TSH. lt´s normal.

Brilliant concise explanation 😊👍

BrynGlas profile image
BrynGlas in reply to PurpleCat71

I can't understand why GP's don't get it that TSH is a pituary hormone, not a Thyroid hormone and they don't seem to,understand what TSH does.

I tried to tell my GP that TSH was a pituitary hormone and why I wasn't worried about it being higher rather than lower.

I think this was perhaps why he didn't like me telling him that I wasn't going to decrease my Levo. He couldn't connect TSH, Pituitary and T4. He didn't agree with me about me not being a good converter either, I just remembered that now! LoL

My end was not at all bothered by the suppressed TSH 0.01 he said symptoms were more important and as long as I was feeling good it didn't matter

Apparently they cannot withdraw your medication without strong clinical reasons. Perhaps these two links will help you: british-thyroid-association... and btf-thyroid.org/liothyronine

shaws profile image
shawsAdministrator in reply to KCFryer

Thank you for the links.

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