Hi I am new, please could someone advise me how to get hold of T3? Despite having a clinical need for it it was taken away from me by new endo. Diagnosed hypothyroid 2011 and taking 25mcg levo from 200mcg levo and 10mcg T3 in August 2017. Thankyou
T3: Hi I am new, please could someone advise me... - Thyroid UK
T3
Written by
Michj
To view profiles and participate in discussions please or .
Read more about...
20 Replies
•
shawsAdministrator
Welcome to our forum Michj
You haven't given members any information about your 'hypo (I assume) journey.
When were you diagnosed? With what? Dose? and any other relevant information.
Thanks.
It was reduced from 200mcg levo and 10mcg T3 in August 2017
There's something seriously wrong with your doctor or endocrinologist's regime.
You must be feeling horrendous to have your combined dose of T4/T3 equalling around 230mcg of levothyroxine down to 25mcg.
Either one needs to get their thyroid hormones checked as their brains are obviously not working.
We cannot possible run our whole metabolism on 25mcg of levothyroxine.
I would write to your MP about the withdrawal of T3 as they are not supposed to do so if we have a clinical need. We also had a petition a few months ago about T3 being withdrawn.
Members who source their own T3 will send you a Private Message as no information is permitted on the forum of where to source prescribed meds.
If you can get a private blood test from one of our recommended labs (pin-prick home ones) as GP probably wont do all of them. Ask him first and say you've been given advice by the NHS Choices for information/help Thyroiduk.org.uk.
You need - and all blood tests have to be at the very earliest, fasting (you can drink water) - and allow a 24 hour gap between last dose and the test and take afterwards.
Request TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.
Vitamin B12, Vit D, iron, ferritin and folate. (GP should do all vits/minerals)
For ones not taken you may want to consider Blue Horizon or Medichecks.
Get a print-out from the surgery and put them on a new post.
We have to read, learn and ask questions in order to recover our health, despite the NHS's dreadful decision about T3. The BTA did state that the Endo/GP should discuss with the patient first before deciding to withdrawal. This is an excerpt from TUK and I've given part below, plus link i.e. thyroiduk.org.uk/tuk/newspa... :-
They also state, “The decision to switch from L-T3 to L-T4 should be based on clinical considerations and should be reached in conjunction with the patient after a discussion of the risks and benefits. Patients established on L-T3 who continue to derive benefit from its use should continue on L-T3. However, patients with uncertain benefits should be considered for a switch to L-T4 and advice should be sought from an endocrinologist on how this can be safely done.”
This is most definitely not what many doctors are doing from what we are being told by patients contacting us and on our forum.
In the FAQ’s for Patients, under the question, “Do I have to switch from T3 to thyroxine” the BTA state, “If you are receiving T3 and are satisfied that you are deriving benefits from it then you do not have to stop it. You should let your GP know that you wish to continue taking T3. If the GP is not happy prescribing it they should seek the opinion of an endocrinologist.”
Again, from what we are being told, no offers to seek the opinion of an endocrinologist is being suggested.
In the “Information for Endocrinologists” document under the heading “Clinical approach to patients on L-T3” the BTA state, “For patients who are established on L-T3 and are considered to be stable, a change to L-T4 monotherapy should not be implemented without discussion with the patient. In such cases change of treatment may result in significant instability of thyroid status and potentially undesirable clinical outcomes, which may prove more costly than continuation with L-T3 therapy.”
Thyroid UK is very pleased to see that the BTA have published these documents and understand that for some patients T3 is required to make them feel well again. Perhaps if their original guidelines had been more specific this sad state of affairs would not have happened.
If you have had your prescription of T3 stopped recently due to the cost or the BTA guidelines, it might be a good idea to print these documents off, highlight the areas that are relevant to you and take them back to your GP or endocrinologist for discussion. It might mean that your T3 is reinstated.
Do let us know how you get on if you do this.
To read the BTA documents go to: british-thyroid-association...
SeasideSusieRemembering
Michj
Removing your T3 will have had the effect of trashing your nutrient levels, and I wouldn't be surprised if you have raised antibodies as well (autoimmune thyroid disease aka Hashimoto's) which makes your results fluctuate and possibly the reason for reducing your dose of levo.
Can you post any results for these:
Vit D
B12
Folate
Ferritin
Iron panel
Full blood count
TPO antibodies
TG antibodies
If I'm correct, these will need addressing before adding T3, thyroid hormone can't work unless nutrient levels are optimal.
TPO antibodies 335 (<34)
TG antibodies >1200 (<115)
Nothing else tested
Thankyou
Mich
It looks like your story is one we see almost daily on the forum. Presumably you are seeing an endo to be prescribed T3.
Is it a different endo who has removed T3 from the one who prescribed it? If so, what reason was given?
Why was your dose reduced to 25mcg Levo from 200 Levo/10 T and was this the endo?
What were your results at the time - TSH, FT4, FT3?
Put obtaining a supply of T3 on the back burner for now, you have much more pressing issues to deal with I'm afraid, I don't think your endo knows what they're doing, they're probably a diabetes specialist (most of them are) and knows little to nothing about thyroid.
Has anyone bothered to tell you that you have autoimmune thyroid disease aka Hashimoto's as confirmed by your high antibodies? This is where antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test results.
Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.
You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.
Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.
Gluten/thyroid connection: chriskresser.com/the-gluten...
stopthethyroidmadness.com/h...
stopthethyroidmadness.com/h...
hypothyroidmom.com/hashimot...
thyroiduk.org.uk/tuk/about_...
**
Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies. Removing T3 also affects nutrient levels.
You need to address both of these issues. Thyroid hormone can't work uness nutrient levels are optimal, but gut/absorption problems mean that nutrients can't be improved, so healing the gut also needs addressing.
It's essential to get nutrients tested now, either through your GP or do them privately with Blue Horizon or Medichecks, so you can address these problems.
**
You probably need an increase in Levo immediately, but let's see your results first. When nutrients are optimal, and when you're on a decent dose of Levo, that's the time to look at adding T3 back in.
I was seeing a different endo who reduced my dose from 200mcg to 25mcg and he said it will teach me for being overmedicated to start with. Thyroid hasn't been tested since thankyou but previous reading on this dose was
TSH 0.02 (0.2 - 4.2)
FREE T4 23.1 (12 - 22)
FREE T3 4.2 (3.1 - 6.8)
Mich
he said it will teach me for being overmedicated to start with
OMG!!! What a dreadful thing to say to a patient, I would have felt like punching him! I hope you replied that you were only taking what dose you had been prescribed so the blame doesn't lie with you.
TSH 0.02 (0.2 - 4.2)
FREE T4 23.1 (12 - 22)
FREE T3 4.2 (3.1 - 6.8)
Are these the results that prompted the reduction to 25mcg? And were you taking T3 as well as 200mcg Levo then?
There is actually nothing wrong with those results other than your FT3 is too low.
You have a below range TSH because you are taking replacement thyroid hormone. TSH is a pituitary hormone, the pituitary checks to see if there is enough thyroid hormone, if not it sends a message to the thyroid to produce some. That message is TSH (Thyroid Stimulating Hormone). In this case TSH will be high. If there is enough hormone - and this happens if you take any replacement hormone - then there's no need for the pituitary to send the message to the thyroid so TSH remains low.
Very basic stuff but this information seems to bypass almost every doctor.
Also, from thyroiduk.org.uk/tuk/about_... > Treatment Options
According to the BMA's booklet, "Understanding Thyroid Disorders", many people do not feel well unless their levels are at the bottom of the TSH range or below and at the top of the FT4 range or a little above.
The booklet is written by Dr Anthony Toft, past president of the British Thyroid Association and leading endocrinologist. It's published by the British Medical Association for patients. Avalable on Amazon and from pharmacies for £4.95 and might be worth buying to highlight the appropriate part and show your doctor. However, I don't know if this is in the current edition as it has been reprinted a few times.
Also -
Dr Toft states in Pulse Magazine, "The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the article by emailing dionne.fulcher@thyroiduk.org print it and highlight question 6 to show your doctor.
Dr Toft has just published an updated article which my computer can't open but if yours willl then it's about some people needing T3 added to their Levo - the link is in SlowDragon 's reply to this post healthunlocked.com/thyroidu...
Thankyou those results prompted the reduction I supplement but levels haven't improved for years
Mich
OK, so I've explained that those thyroid results are fine except for a low FT3 so there was no need for the ridiculously drastic reduction.
As far as your nutrient levels are concerned, and the fact that supplementing hasn't improved them, that's all down to the fact that you have Hashi's along with the gut/absorption problems it brings.
So what we need now is your nutrient level results and what you are supplementing at the moment:
Vit D
B12
Folate
Ferritin
Iron panel
Full blood count
These must be optimised before any thyroid hormone can do it's job properly, and as far as addressing the gut/absorption problem then check out SlowDragon 's reply to this post healthunlocked.com/thyroidu...
Thankyou I have results where do I post?
Mich
You can post on this thread if you like, keeps all the information together. Or you could make a new thread but put a link back to this one or anyone new coming in will be asking lots of the questions already asked and answered here.
So T3 isn't the answer?
Mich
T3 could very well be the answer eventually, but the other problems need sorting first, as mentioned in my post above. Let's see results of those tests, get nutrients tested because I'm 100% sure that they will be dire, but adding T3 at this stage isn't the answer.
Welcome to the forum, Michj.
Who reduced your dose from 200mcg Levothyroxine and 10mcg T3 to 25mcg and why did they say such a drastic change was needed?
Has thyroid function been tested since you have been taking 25mcg?
My endo reduced my dose from 200mcg to 25mcg and he said it will teach me for being overmedicated to start with. Thyroid hasn't been tested since thankyou
Michj,
As you don't prescribe yourself 200mcg Levothyroxine how can it be your fault if you are overmedicated on the dose prescribed? I would teach your endo some respect by writing a letter of complaint to the head of endocrinology or PALS at the hospital. Doctors are not supposed to comprise a patient's health and wellbeing in order to teach them lessons.
I'm certain you will be undermedicated on 25mcg so ask your GP to do a thyroid function test and refer you to another endocrinologist.
SlowDragonAdministrator
So sorry you are yet another caught up in this T3 war going on between forward thinking endo's and ones that need consigning to the bin of history
Make an urgent "on the day" appointment with GP
You need thyroid retesting and vitamin D, folate ferritin and B12 testing urgently
These are very very likely extremely low
This is what happens when idiot arrogant endo stops T3. Vitamin levels crash right out, then you can't use thyroid hormones and bloods tend to show over treatment
You well very likely need serious levels of supplements, slow increase in Levo back up in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range
Highly likely to need to also be strictly gluten free.
Typical posts after T3 stopped
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
Thyroid UK are collecting evidence of malpractice due to removing clinically needed T3
Please consider sending a brief outline of this. How T3 improved you and the subsequent disaster since it was stopped. I would include vitamin levels (assuming they are dire) once you get them
T3
T3
T3
t3
