Suppressed tsh

[bandicoot66]

Hi, I've has suppressed tsh for yrs and my previous consultant was fine with that. I am taking levothyroxine70 and 20 Liothyronine dure to extreme tiredness and low t3. The new consultant( moved area) says that dose will damage my heart. Don't want to feel awful again. I have no heart problems presently and have been taking this dose for 20 years. Thoughts please.

[TiggerMe Ambassador]

Do you have a current full thyroid panel to show them that your fT3 & 4 are within range also BP, RHR and temperature to show you have no signs of being over replaced?

I always have to push them to look at these results rather than TSH and then justify their comments..... Seems it is down to us to do the proper monitoring

[bandicoot66 in reply to TiggerMe]

Hi, normal 119 over 63 bp rhr 72 and everything else in range Inc temp. So no problems.

[TiggerMe Ambassador in reply to bandicoot66]

Nothing for them to worry about there then! As long as your 'frees' are within range they can't bully you to reduce, if it comes down to it say that you are happy to take the risk of heart problems (unproven - low fT3 much worse) for the benefit of quality of life now

My Endo noted this and only comments about reductions knowing that I won't reduce for the sake of TSH

Last comment to GP from Endo was "I'm aware that the patient is unlikely to take my advice to reduce"

[bandicoot66 in reply to TiggerMe]

Thank you, that makes me feel better . I haven't been told to stop it yet but he said the risk of heart problems was a serious one. I would be very reluctant to stop as I have been feeling well for so long now. Thanks again.

[TiggerMe Ambassador in reply to bandicoot66]

Stand your ground 🤗 you are the expert!

We have to educate them one at a time 😏

[waveylines in reply to bandicoot66]

Hmmm..... ask him to produce the body of evidence proving this. If you've kept your actual thyroid hormones in range it doesn't exist.

[greygoose]

I expect he's a diabetes specialist, isn't he? Explain to him gently that:

- the heart needs a lot of T3 and it will suffer more if it doesn't get enough than if it were to get a little too much

- taking T3 will usually suppress the TSH

- the TSH is suppressed because you're taking a decent dose of T3 and therefore don't need it anymore, either for thyroid hormone production or conversion

- TSH has nothing to do with hearts (or bones come to that)

- it's not about the size of your dose, it's about how much is absorbed in the gut, to begin with, and then at a cellular level - and we can't measure that, but if you have no hyper symptoms then you're not taking too much - you'd soon know if you were!

I'm sure there are other points to be made, but I can't think of them off-hand.

[bandicoot66 in reply to greygoose]

Thank you, very reassuring.

[greygoose in reply to bandicoot66]

You're welcome.

[SlowDragon Administrator]

Research showing Levo and T3 combo superior for heart

healthunlocked.com/thyroidu...

Make sure you get FULL thyroid and vitamin testing

If Ft3 is within range and you feel fine no need to change

Very important to test folate, ferritin and B12 at least once year minimum

ideally test vitamin D twice year

what vitamin supplements are you taking

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

On T3 - day before test split T3 as 2 or 3 smaller doses spread through the day with last dose 8-12 hours before test

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Timings of testing

healthunlocked.com/thyroidu...

Just TSH, Ft4 and Ft3 test - £32

monitormyhealth.org.uk/thyr...

10% off code here

thyroiduk.org/testing/priva...

Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65

(Doesn’t include thyroid antibodies)

monitormyhealth.org.uk/full...

10% off code here

thyroiduk.org/testing/priva...

[arTistapple]

Being under medicated is much more likely to cause you heart problems. As above, our medics don’t seem to have the slightest interest in making us well or take the time to keep up with research. They follow an entirely useless a tick box system designed by equally ignorant and uncaring endocrinologists.

[serenfach]

Some stuff that you may find useful, and can send it on to consultant-

Not every organ can convert T4 efficiently at a local level. Some organs and systems rely more on Free T3 in blood. This is the case for the heart. Studies have found that the cardiac myocyte depends largely on Free T3 in bloodstream (Wang et al, 2016).

In a more recent journal article, Razvi, et al, 2018 describe the effects known to date, that appropriate T3 levels protect the heart in case of injury or stress.

Oodles of info on T3 and the heart here:-

thyroidpatients.ca/2018/07/...

You can tell them until you are blue in the face that the old tale about T3 and hearts and bones has been disproved. They wont listen. Bunging a paper that says it may help, but this also shows you are not just taking their word for it, but are looking into it in order to get well.

Hope this helps.

[Lilian15]

Well if it is any consolation I have been taking :- 40mcg T3 with 100mcg T4 for 1 year, then I changed to Armour until it needed a prescription, then I changed to Naturethroyd , until they stopped working on me, and I went back to buying T3 with prescribed T4. I am now taking 55mcg T3 with 150 mcg T4 without a problem. I have been taking this for 22 years. They have been warning me for all this time that I am going to have a heart attack and osteoporosis. I am diabetic and that puts me at more risk of heart attacks. Heart surgeons give the patient T3 to help their hearts. I am at extreme risk of heart attack as I am extremely overweight, I have diabetes, my father died of a heart attack, I cannot move around much because of arthritis, and I am 84. Personally I think the T3 has stopped me from getting a heart attack so far. I wonder how many years will go by with them still warning me I could drop down dead with a heart attack if I keep taking T3. Originally they said taking it will give me a heart attack. Now 22 years later they say it is taking such a high dose will do it. Does that mean they have recognised a small dose of 20mcg will not do it after all?

[jsy_girl]

thanks for sharing. I had this exact experience in December. I’d been accepted to move to nhs prescriptions of lio from my private consultant. I saw his assistant the first time who was supportive and prescribed and I even collected the prescription from the hospital pharmacy. I was shocked.

Second visit less straightforward as he said “I want to find out why you’re on such a high dose”. I was also asking to up my T4 slightly which didn’t help.

I said am I really on a high dose. He took my numbers and converted them to a T4 only dose and said no one is on such a high dose.

I held firm. I said I can only go by how I feel. I know tsh is suppressed because I am on t3.

FYI I am on 125 mcg Levo and 25mcg lio

he then said there hasn’t been enough trials on patients on T3 to have the data on it so then I was like well how can you then say I’m on the highest dose maybe there’s lots of people under medicated!

Anyway he eventually agreed and I feel it’s a dose which works. (I have moved up to 150mcg Levi 4 times a week).

best of luck