T3 instead of T4: My wife not doing so well on... - Thyroid UK

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T3 instead of T4

Chrys profile image
10 Replies

My wife not doing so well on mixed 50mcg T4 and 15mcg T3 so I stopped the T4 again. (Endo went berserk last time I did this), she immediately the next day felt better, and after 6 days still does. Been to the GP to legalise this, who is happy with it, but when I queried the instructions that come with the SigmaPharm T3 which states "When switching a patient to Liothyronine Sodium from...L-Thyroxine..., discontinue the other medication...etc." She seemed quite happy with that, yet clearly, according to the manufacturer, T3 treatment does away with the requirement for T4, which one reads elsewhere.

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Chrys profile image
Chrys
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radd profile image
radd

Chrys,

Two months ago your wife was under medicated with a TSH of 4.08, under range FT4 and very low FT3. I would have suggested she required more Levothyroxine, which the small amount of medicated T3 she was taking would have helped convert to further.

Her Vit B12 was fine but folate was low. These two work together. Also folate keeps homocysteine in check and high levels can disrupt thyroid metabolism at a cellular level, blocking T3 from binding with helper enzymes.

Ferratin was ok but Vit D was low and is important for the management of inflammation, etc.

It can take months for thyroid hormone to fully metabolise and symptoms can lag behind good biochemistry. I would suggest she optimise her thyroid hormone replacement of T4 and possible multi-dosing of T3 and if still felt unwell after several months, investigate why they are not working well .. ie elevated thyroid antibodies with possible inflammation causing abnormalities to the hypothalamus-pituitary-thyroid (HPT) axis or decreasing the number and sensitivity of thyroid hormone receptors, or investigating possible sex hormone imbalances causing elevated protein carriers to bind thyroid hormone making it unable for “free” use, etc, etc ? ? ..

There are a few members who medicate T3 alone successfully but stopping and starting thyroid hormones is not a good idea and too much T3 can lead to imbalances in other hormones.

Chrys profile image
Chrys in reply to radd

Thanks, you clearly are more knowledgeable than me, but I still struggle to understand why a drug company, presumably who have carried out the required testing, state categorically that T4 should be stopped when T3 is started, and also go on to give precise instructions as to how the T3 dosage is monitored and increased. If this is not the correct medical advice, how is it that the appropriate medical authorities, allow this medication to be marketed? We simple patients are between two stools, do we believe the Doctors and Endos? (Don't answer that) Or do we believe the drug company?

And if we don't believe the drug company, what other stuff in the patient drug information leaflets do we disbelieve or ignore?

You use a wonderful phrase "I suggest she optimise her thyroid hormone replacement...etc."

I may be simple, but I suspect that that is what all the blood tests, Endo visits, and resultant medication changes have been supposedly aiming to achieve over the last 6 years.

I should add that my wife has never felt really well the whole time she has been on T4 or T4+T3. The only time she has felt anything like normal, is each time she has stopped T4, of whatever brand.

As a simple engineer, I believe in empirical testing, and in engineering terms,

"If it ain't broke, don't fix it."

radd profile image
radd in reply to Chrys

Chrys,

I medicate NDT but in previous years of medicating T3 (added to my T4), this is not something I have come across in the PIL.

I am sorry to hear that your wife has been so unwell on thyroid hormone replacement. A period of improvement may be felt upon removal of untolerated meds but is usually short lived as the achievement of a long term euthyroid status is dependant on missing thyroid hormones being replaced, and for many this must be at levels of at least half way through range.

Because attainment of this euthyroid status is so dependant on multifactorial issues, when symptoms remain after optimal thyroid hormone levels are achieved, other factors should be considered before switching meds.

Basic regards might consider has your wife ever attained optimal levels (or is endo misguidedly dosing her on TSH results? ) Is she taking her meds on an empty stomach with a glass of water ? Has she optimal levels of iron, etc ? Has she been tested for thyroid antibodies ?

To invite others to give their experiences regarding your query, it may be helpful if you started a new post with the heading more indicative of your question ... something like “Why does T3 PIL state T4 has to be discontinued before use”? and advise which drugs company is producing your wife’s T3.

I wish you both well.

Chrys profile image
Chrys in reply to radd

Both GP's and, most, Endo's invariably prescribe based on TSH only, as we all know. We have had all the appropriate tests done privately, so yes, to high anti-bodies, yes to iron etc. Yes we know how to take the medication, and the T3 is by SigmaPharm. See reply to Aurealis below.

in reply to Chrys

I actually don't believe GP's or Endos I self medicate with no thyroid and feel well. I only listen to the experts on this site they are full of valuable information.

Aurealis profile image
Aurealis

Chrys, I am wondering why you’re adjusting your wife’s medication. Is she not well enough to do it herself? It is possible to stop Levo and feel well for a while, but there will be a crash down the line that will take some recovering from. A 50mcg reduction is a big drop. T3 only is very tricky to balance. If you’re wife is unable to do this herself I think it will be impossible for you to adjust for her. And T3 only is not for everyone. I for instance, feel very poorly without any T4.

Chrys profile image
Chrys in reply to Aurealis

No she is not, partly due to the onset of Alzheimers, no doubt exacerbated by Hashimoto's. Therefore I try to look after her health needs.

As we know she does not convert T4 properly anyway (DIO2 gene variation), the last Endo visit, who was quite knowledgeable, advised that she was proposing to stop T4 anyway. Perhaps you are fortunate and convert T4 well.

Aurealis profile image
Aurealis in reply to Chrys

Sorry to read about your wife’s health. No I don’t convert well but I need both T3 and T4.

If you are embarking on T3 only, it may be helpful to get Paul Robinson’s book ‘Recovering with T3’ which has lots of useful information about dosing and monitoring using vital signs which you could measure for your wife’s progress as T3 dose increases. There is also a Facebook group which supports the book called ‘T3 support’, and you could start an individualised thread to get quick answers if you need them. Obviously admins and members there are knowledgable about T3. I would advise that -

-you split the dose into several smaller doses

- a small amount at bedtime improves sleep

- food on regular schedules is helpful

- the largest dose is best first thing in the day

- don’t increase too quickly if your wife is elderly as speeding up the heart rate can be a problem for older people (in case of heart problems)

- if the dose is too high it is possible to bring levels down quickly over a day due to short half life of T3

- I found that if levels of T3 were too high I could get to feel better through exercise and/or a glass of wine!

- you check B12 again when you can and join healthunlocked group for that too (as I think there is some controversy about B12 levels and schedule of treatment). I have personally met two people having B12 injections on very short intervals, much more frequently than usually recommended

- exercise, if it possible, is helpful

I was quite frightened of taking T3 at first but I think it is very worthwhile for those of us that need it.

I hope that your wife’s condition improves with effective thyroid treatment, it is possible that some of her symptoms could be due to undertreatment / insufficient conversion. Lack of B12 can have similar effects.

Good luck (and take care of yourself too) xx

shaws profile image
shawsAdministrator

I only recovered when I stopped T4 and continued with T3. I believe that some people cannot improve on levothyroxine. At one time we were all given NDT (natural dessicated thyroid hormones) which contain all of the hormones a healthy gland would. Unfortunately this was withdrawn due to False Statements made by the Associations, even though it has been in use, safely since 1892. Big Pharma saw a way to make profits by introducing levothyroxine (T4 alone) along with the blood tests. Before that we were diagnosed upon clinical symptoms and prescribed NDT.

Levothyroxine (T4) is an inactive hormone and it has to convert to T3. T3 (liothyronine) being the active hormone required in our millions - if not billions - of T3 receptor cells, the brain and heart containing the most.

Maybe the Endo doesn't want to lose his job as I believe they've been told to only prescribe T4 now as the suppliers of T3 to the NHS has increased price so high that there are no alternatives, one being that the Association has made False Statements in order to withdraw NDT, and now the cost of T3 is another excuse to withdraw it from patients intantly, without warning.

Your wife has gastric problems too some of the Levo contains fillers and E numbers which might not help there are a couple of Levo medications that contain no fillers.

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