I have just returned home and I want to point out that liothyronine (T3) may not be the saviour for some people as we are all so different in what our bodies like or don't like.
Some prefer Natural Dessicated Thyroid Hormones - if they can be sourced as they're now withdrawn from the NHS. WHY?
Some benefit with a T4/T3 combination and some on T3 alone. So it is trial and error and don't build up hopes too soon.
I took to T3 like a duck to water. For me levo (T4) caused terrible palpitations and even the cardiologist couldn't figure out why! When I stopped T4 palps disappeared.
Following and reading Dr John Lowe's site/method did the trick for me.
I believe that Dr Skinner and Dr Peatfield also prescribed options if person not improving on levo. Unfortunately, both doctors were then pursued as if they were criminals and caused Dr Peatfield to resign his Licence but he still could advise but, after treating many peopled it must have been difficult for him.
Dr Peatfield was very kind indeed and concerned about the patients suffering.
Dr S. appeared before the GMC a number of times but it certainly wasn't his patients who complained as they travelled from all areas in the UK to consult. He had many followers worldwide.
When his staff are able to publish their research that they collated after Dr Skinner's death they said it is hopeful that it would also change the attitudes of the BTA et al.
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shaws
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We can only hope things work out for us and it is amazing how we feel when on the correct dose of thyroid hormone replacement. I'm sure you know to leave a good space between your last dose and the appointment and take it afterwards.
I agree shaws , T3-only saved me ...but I've said to several people that's it's not the panacea of all ills
I sometimes think people see T3 as a "quick cure" option - without thoroughly trialling T4/T3 combinations and optimising appropriate nutrients - rather than the last resort that it is.
It took me about 3 years to move from LT4 which left me barely able to function to finally finding my therapeutic dose of T3-only.
It has to be treated with understanding and respect
For those who do not respond well to LT4 mono therapy treatment is potentially chaotic at best and a nightmare at worst.
I found Dr Lowe's work ( recommended by you, thank you again!) hugely helpful.
On levo I felt far more unwell than when my TSH was 100. That's when I was fortunate to find Thyroiduk.org.uk. as GP had phoned to tell me I had no problems and test was fine!
I had severe palpitations on levo particularly during the night and I had a number of overnight links to the cardiologist who was puzzled about this and he was trying to fathom it out.
It was only when T3 was added to T4 that I felt an immediate improvement and no overnight palpitations. I then took T3 alone and never saw the Cardiologist again (touch wood).
I follow Dr John Lowe's advice especially when taking T3 (one daily dose) as it saturates all of the T3 receptor cells that can last up to three days by sending out 'waves'.
Why - if there's options for hypo patients are we not entitled to trial them (due to cost??) . I am aware of someone who committed suicide and she left a letter for the coroner to explain why. How sad and dreadful is that in this modern era?
People who don't have a dysfunctional thyroid gland cannot possibly understand how bodies react especially if it is negative.
I am glad that you, too, are well on your replacement dose. We cannot explain how we feel if dose or brand doesn't suiti.
Even my GP - when I was at my worst and I knew nothing about thyroid hormones - who phoned to tell me my tests were fine and there was nothing wrong. That's with a TSH of 100. I cried.
Thanks to Thyroiduk I am indebted to them and the only way was 'upwards with their advice/help.
Hi Shaws, I am taking 60 mg of T3 and my bloods showed very low TSH and T4 so my doctor put me back on a small dose of T4 as well. Is that necessary? I feel a bit tired now ! Thanks
I am not medically qualified but I will state that 60mcg of T3 is high. Some people have a condition that causes 'resistance' so they would need a large dose.
25mcg of T3 is equal, in its effect, to approx 100mcg of levothyroxine.
If we take T3 only (being the Active Thyroid Hormone) then our TSH will be low.
I take my dose of T3 (25mcg) when I awake with one glass of water and wait an hour before I eat. My body feels normal and I have no symptoms.
Your doctor added some T4 to your dose but is he aware that it changes to T3?
I apologise for not responding to your query above 4 months ago and my answer is 'yes' I only take one daily dose and I lead a normal life without the worry of having to take a split dose. My symptoms resolved.
How long have you been taking that dose of T3? I spread mine out through the day 25, also. I just don’t do well on T4, and my doctor is flexible about how I take it my meds. I’m trying t3 only. I had a thyroidectomy
They should know that T3-only medication results in lower TSH and FT4....that's how the body works.
On your dose the pituitary gland recognises an adequate level of hormone/ T3 in the blood. so does not need to send a signal (TSH) to the thyroid to produce more hormone - as a consequence TSH is low and that's fine.
On T3-only FT4 is also low
FT3 will be well up ref range
FT3 is the important result and should remain within range to avoid overmedication... unless you have a form of thyroid hormone resistance ( like me) and need a high dose of T3
I need high dose T3-only and my TSH and FT4 have fallen off the scale with high FT3
Blood tests were not designed to test T3-only dosage
Once the T3 dose increases above a certain level ( say around 60mcg) lab tests are pointless and we have to test by signs and symptoms....resting heart rate, basal temp, any evidence of hand tremors when arms are outstretched with palms down, blood pressure
Does your doctor ever ask how you feel or does that not interest them.....it's a vital question!!
If you feel well they should not be playing fast and loose with numbers on their computer screen he should be treating you according to how you feel.
If symptoms returned after he added T4 then that change was wrong for you.
Some of us just cannot tolerate levo/T4 so don't be forced into taking it if it causes a problem.
DippyDame, thanks for jumping in, the doc does ask my how I feel, he suggested adding back a small amount to see how I feel. I am still okish but I felt fine on the 60 of T3. I have just noticed now that I am dizzy a lot but it doesn’t show as a symptom of overdose! I think I will stop the T4 to see if I stop the dizzy spells
You will only be overmedicated if FT3 is over range
T3 is the active hormone
It sounds as if the T4 may be the problem, the only way to be sure is to stop it and see how you feel. As with much of thyroid medication trial and error is involved....especially as you felt fine on 60mch T3.
Hi DippyDame, I added back 25mcg of Eltroxin but before that my bloods showed T3 at 6pmol/L, top of range is 6.8. So I was close to top of range. I am guessing I pushed myself over. Today no T4 and no dizziness yet !
There's a huge difference between T3 and T4 in their 'effect' you were taking 60mcg T3 after op. I'm sorry you had TT so you've no thyroid gland at all.
If you're having an appointment always make the earliest and don't take your dose before it. (I think you know that already). Take afterwards.
Are they stupid! 60mcg of T3 is approx equal to over 240 mcg of T4 - in its effect. Then they switch you to T4 that makes you unwell - my body doesn't like T4 either and it gives me severe palpitations.
I have taken 25mcg T3 daily. It is sufficient to relieve any symptoms and I feel well. In UK they prescribe T3 but it is 20mcg.
Yes, they did stop prescribing T3 in UK due to its exorbitant cost and it was a good excuse, despite some countries in the EU providing it for about £1 fora month's supply. UK have now restored it I believe if the doctor is willing.
If you're having an appointment with Endo try to get the earliest time and don't take T3 before appointment but afterwards. Ask him to restore your T3 as you feel well upon it and that T4 isn't converting to sufficient T3.
60 mcg of L-T3 is equivalent to 180mc* L-T4, see ncbi.nlm.nih.gov/labs/pmc/a... . For decades endocrinologists have quoted a 4:1 ratio based on the equivalent effects of T3 and T4 in the blood. When taken as tablets there are different absorption rates and half lives giving a different ratio.
For your GP to state he 'cannot help you any more' why doesn't he refer you to an Endocrinologist (you might strike lucky and get someone who's kind and knowledgeable.
Unbelievable that a qualified doctor would say that,T4 coverts to T3, not the other way around, honestly I despair and how are thyroid patients in the UK ever going to get optimum treatment, when the doctors treating them, don't have the knowledge to do so, it's a disgrace.
a friend who studied medicine told me that they studied in the degree half a page for the treatment of Hypothyroid. I suppose this was the basics, and then some could expand information... that I was told
Been there, done that! The entire point of the gp's response (if you check the links) is that T3/NDT is NOT being prescribed by the SW and SE London NHS! They claim that 'there's no evidence that alternatives to T4 actually work' Check the page.
"Non Formulary Items
Liothyronine tabs (hypothyroidism)
View adult BNF View SPC online Non Formulary
Grey
Not approved for use in SE London (either as monotherapy, or as combination therapy with levothyroxine) - See formulary Position Statement (link below)
Link SE London Position statement: Prescribing of liothyronine tablets (monotherapy or in combination with levothyroxine) for hypothyroidism (not recommended)
Maybe make an appointment to see your Member of Parliament and inform him/her that you cannot get the thyroid hormone replacement you require to enable you to restore your health as you cannot get it prescribed.. You can also give him/her a couple of statements about your condition as some people have no clue what a dysfunction thyroid gland 's purpose is in our bodies.
I'm not impressed with my MP, in fact I think she's useless but I'll try. When I write her, I get a boilerplate response and never hear from her again!
Have you come across this web site? It's really eye-opening. You can see if your GP practice prescribes T3 and to how many patients. You can see information on the CCG or any other practice around you might want to switch too.
Well, I already know they don't, in fact, I've given up on my GP. I'll get blood tests done via my GP but I think I'll deal with the meds side of it myself (with some help but not from my GP).
At present I'm trying to use up my 5mcg T3 from US ( liotyronine) At one point I was taken almost 8mcg ( very difficult to cut and quesstimate ) and after lunch / in afternoons I'd take 30mg of NP or Thyroid S....Now am just taking 5mcg T3 in the morning and 15mcg of Erfa around 2.30pm....Whenever I increase the NDT I also have palpitations which become obvious at night as I wear earplugs to sleep ( lived at the end of runway near terminal 4 in past with Concorde at the time flying even around 11pm and now just difficult to fall asleep without earplugs) . I haven't yet tested with the liothyroniine so will never know if my T3 was higher then when I was taking NDT ( ERfa now) in the morning s( just 30mg around 8am). Plus I only take the 5mcg Liothyronine every other day...I used to be able to take 2 grains of NDT but since raising my estradiol/estriol, testosterone levels in my BIH it seems I can't happily take more then 45mg of NDT....I am aslo taking Adrenal cortex 50mg to slightly raise the cortisol level( although it's within range) and Holy Basil at night to slightly lower it ( again in range but could be lower) .... Hormones are certainly a mystery....I would have been Optimal at the start when I took lower BIH if it wasn't for the Reverse T3 which also raised when I was on 2 grains of NDT ( 120mg) . Also seemed ( blood result wise) I was better off on the Iodine protocol ( not checked reverse T3 at the time) Am tempted to stop the NDT altogether ( and forget about liotyronine too for a while) Even when seemingly the results were Optimal (if it wasn't for raised reverse T3) I still had my temperature problems ( felt cold but on & off perspired lots too) ; My conclusion was that it probably has to do with my mild - moderate ME and temperature dyfunction...
My endo knows I'm taking t3 but she won't prescribe it for me saying her hands are tied. Is there anything I can do to push for it ? I see her end of march
My GP wasn't happy particularly as I titrated my way through varying doses.
T4/T3 first then T3-only
She had a fit when she saw labs....suppressed TSH and FT4 with FT3 in orbit.
She shouted me down when I tried to explain what was happening
I was killing myself....guess she feared a T3 death on her hands!
Her thyroid knowledge is scant so I understand her panic.
She ordered a heart scan....all perfectly fine. That was on 200mcg.
Clearly I have a form of Thyroid Hormone Resistance....or that would likely have killed me.
I eventually wrote out a timeline for my medical records, explaining Thyroid Hormone Resistance and cellular hypothyroidism and what I'd done and why. Added research papers and reliable articles from Journals.
No response!
Haven't checked to see if she added it.....yet!
She asked what I'd do about T3 if I have to go into care and couldn't get it.
Die, was my answer.
Silence!
I've been able to lower my dose as (I gather, and basically) the high dose kick started some of the dormant T3 receptors enabling more T3 to reach the nuclei of the cells.
I wish I'd known at least 50 years ago what I know now, it might have saved decades of health problems and loss of opportunities, and been easier for my lovely, supportive husband and sons when I "crashed".
My brother used to say, "Don't look back, that's not the way you're going"
I'm 76 and functioning fairly well now, but some of the damage done by low T3 may never resolve....but I'm happy as I am and much better than many my age...I keep saying I'm 67....that feels about right!!!!
How many poor souls have the problem, don't know what's wrong and are fading away quietly behind closed doors....and some killing themselves. It has happened.
I will never understand how this scandal was allowed to happen
The NHS can work miracles
Spend vast amounts of money
Yet neither the expertise nor the money is deemed vital to treat those with (cellular) hypothyroidism.
We aren't asking for the moon, only sufficient thyroid hormones that suit and relieve our symptoms so that we feel well again and not burdened down with an autoimmune disease for which there is appropriate replacements.
Blood tests were invented so that Big Pharma got bigger profits.
I doubt that there is any other (widespread) medical condition that medics refuse to treat with available medication.Would they refuse insulin to a diabetic?
Treatment is (rightly) available for the addicted
But T3 for certain hypos....No!
The price hike of T3 is preposterous
We know how cheaply it can be sourced elsewhere
The fear (amongst medics) of T3 is rediculous
It is not understood....educate medical students!
Teach them how it really works.
And yes, any possible side effects too.
The medical profession use powerful and costly drugs ( and other treatments) on a daily basis.
DippyDame, 'She shouted me down when I tried to explain what was happeningI was killing myself....guess she feared a T3 death on her hands!
Her thyroid knowledge is scant so I understand her panic.
She ordered a heart scan....all perfectly fine.'
You've been around this forum long enough that you more than likely know about this book. But I'm mentioning it for the benefit of others reading here.
I think that those of us who have internet connection don't realise that many, many people do not have internet connection - therefore there's no way to try to improve health or remove clinical symptoms.
Absolutely....without an Internet connection we would be "up a creek without a paddle"I fear for those suffering in silence behind closed doors...and I suspect there are a considerable number who have no idea why they are failing and only have medics who are clueless.
Yet, man can put the James Webb telescope into deep space.
Something very far wrong in thyroid-land as we know to our cost!
"She asked what I'd do about T3 if I had to go into care and couldn't get it.
Die, was my answer.
Silence!
Why have the professionals got such a negative viewpoint of T3 - after all our bodies whether hypo or not cannot function without it and our brain and heart have the most T3 receptor cells. I bet doctors have no clue whether it's "active or inactive". They only seem to take notice of the TSH which is from the pituitary gland.
Agreed. We haven't been able to buy T3 for family members for some time. I know there are reports of general cognitive decline for some people but for my affected family/friends for some of them it's happened so fast that it's a blur. And now there all sorts of problems getting some of them tested (in and out of MAUs or care facilities) even if I could find a reliable source.
jimh111, It's not available on Amazon. In fact I think it's only available through TUK. I have a vague recollection that Dr Skinner gave all remaining copies for TUK to sell to help raise funds for the charity.
I’m on a few of their groups on fb and I can’t see anything changing their attitude. I rarely visit now as some of the advice makes me both sad and angry
As it turns out, I can't seem to tolerate T3 at all, whether as liothyronine or as part of NDT. Anything much more than even just 1 mcg and I feel like I'm about to jump out of my skin, and I get runs of tachycardia. I seem to be fine with T4/levothyroxine so far (up to 50 mcg at the moment). It's too bad, since a little T3 seems to help the lab values... but I suppose you need to treat the patient and not the labs.
This worries me so much? My GP was happy to prescribe me Liothyronine, once my Endocrinologist had recommended l take it. Now my GP has retired as have all what l would of call the old School GP's in the practice. Now the Practice has been taken over by new young GP's. My new GP said she would prescribed it this time so l have enough to keep me going until April but she really was not happy and said she was breaking the rules as she is not supposed to prescribe it. My Endocrinologist told me that it was at the GP's discretion and that they could if they decided to. I explained that my Endo had written to her recently after he had done a blood test. She again said she was not happy and would speak to me again in April and ordered me to to have another blood test.I have been so much better since taking a combination of Levo and Lio the weight has stopped piling on weekly and I've lost amost 2 stone it has been slow going but a least I'm not putting it on anymore. Although l do still get symptoms they are much milder and l feel so much better in myself. GP a d nurses answer to that is of course your feel better 2 stone lighter. I dread to think what will happen in April and what l can do to fright/appeal if she won't prescribe it anymore.
I was very unwell by the time I was fortunate enough to meet with Dr Skinner, I miss his help. If it were not for the knowledgeable and compassionate Dr Skinner, I do not think I would be here today. He turned my health around when no one else cared or dared.
These doctors are missed so much. On his demise his staff have worked so hard to go over all of their scientific findings and hope to publish it but they need the funds to do so.
They've stated that what they have 'discovered' would shake the foundations of the present BTA et al.
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