How to raise fT3 without T3 meds?: I have... - Thyroid UK

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How to raise fT3 without T3 meds?

buddy99 profile image
35 Replies

I have Hashimoto's and my fT3 is quite low, either at the very bottom of the reference range or even below. Have seen several endos, none of which wanted to even try adding T3 to the treatment. One said T3 has no function (?) and TSH and fT4 are perfect so I'm fine. I have given up hope that any physician will make an effort, so resigned myself to feeling like crap instead of being yelled at. Maybe there is somebody in the forum who has any suggestions as to how I can raise my T3 somehow. Just in case you need to know: TSH 0.97 (0.27-4.2), fT4 18.4 (12-22) and fT3 3.7 (3.2-6.8). These are current values. My dose had been lower before with a TSH of 1.8 and fT3 below normal range. At least I could convince last endo to up dose because of all the hypothyroid symptoms. Thanks for your help. :)

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buddy99
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Marz profile image
Marz

It sounds as if you have a conversion issue - converting inactive T4 into ACTIVE hormone T3. This can happen when your B12 - Folate - Ferritin and VitD are low in range.

Have they been tested ? - and what were the results ? One step at a time !

buddy99 profile image
buddy99 in reply to Marz

Thanks for response. My doctor will not test for those, so I regularly have them tested with a kit from the UK (I live in Canada). B12 and Folate are fantastic. I had been very Vitamin D deficient for probably years (seen that now I have osteoporosis) but the values have recovered slowly. I'm now in "normal" range, 77 (50-200) but definitely working on getting the level up to at least 100, hopefully more. I have started to take 10000 IU daily recently. Will test again in 3 weeks. Vitamin D has been a concern for as long as I can remember. Apparently I'm not a good converter of sunlight into Vitamin D. Ferritin is also pretty good. Maybe I need to shell out the money for another thyroid panel (same company), since my GP does not do that either, once the Vitamin D levels are more in the mid to upper range. Thanks again for your advice.

SlowDragon profile image
SlowDragonAdministrator

Are you on strictly gluten free diet?

Do you supplement magnesium and vitamin K2 mk7?

Do you supplement vitamin B complex or B12?

buddy99 profile image
buddy99 in reply to SlowDragon

Yes, I'm gluten free because I also have celiac disease. My Vitamin D supplement has K and A in it and I take it with flax seed oil. I supplement with a B complex and Selenium (just in case somebody also thinks of that :) ). Magnesium I take occasionally but not regularly (I keep forgetting to take it in the evening :( ).. Thanks for your response. Much appreciated.

SlowDragon profile image
SlowDragonAdministrator in reply to buddy99

Well if you are coeliac your conversion of Ft4 to Ft3 is almost inevitably going to be poor

You likely need addition of small doses of T3 alongside levothyroxine

buddy99 profile image
buddy99 in reply to SlowDragon

I have cautiously tried to convey this to my doctor. But, no, "they are two different issues and one has nothing to do with the other" full stop. I mean, what can I do? But thank you for validating me in this. :) It feels good.

SlowDragon profile image
SlowDragonAdministrator in reply to buddy99

Important to actually test all four vitamins annually

Most of us do so privately...

SlowDragon profile image
SlowDragonAdministrator in reply to buddy99

Was this test done with no Levo for 24 hours before test ...or by leaving longer (For GP test) as you described

buddy99 profile image
buddy99 in reply to SlowDragon

The TSH was tested privately as part of thyroid panel. I made sure to take the regular dose and had more than 24 hours of Levo before test. Vitamin D was tested 7 months ago. So I'm due again (Mr. COVID makes things a bit more complicated :) ). I usually test in Spring and Fall to get a feel of what's going on seasonally.

SlowDragon profile image
SlowDragonAdministrator in reply to buddy99

Ft4 is only 64% through range

Conversion clearly terrible

FT3 is only 16.22% through range

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, 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 articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

tukadmin@thyroiduk.org

When was vitamin D last tested

How much vitamin D do you take

taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

buddy99 profile image
buddy99 in reply to SlowDragon

Thanks for all the info. I take 10000 IU right now to test again in 3 weeks since the usual 5000 IU brought very slow progress. I am not very optimistic about showing my doctor a print out. Been there, done that. It really ruined what little relationship there was. Changing doctors is close to impossible. So for now I'm stuck. I'm hoping to move to a different province when I retire where there are a number of recommended (often functional) doctors. In the meantime I can only do what I can without a doctor's help. By the way, I was also dump enough to mention the supplements I take (which had been recommended by a functional MD in the neighbouring province). That also got me yelled at. In conclusion: I stay away from doctors as much as I can and tell them as little as I can. I just have to suck it up and muddle through somehow. So I'm grateful for any information I can get, but that information can not always be transferred into real life if it involves a doctor.

Batty1 profile image
Batty1 in reply to buddy99

Your doctor actually yells at you?

buddy99 profile image
buddy99 in reply to SlowDragon

The endo I showed the above information about T3 conversion to straight out laughed at me. And then told me he was the one who had studied medicine long and hard not me. Then he told me that T3 had no function. I assume that was to get me out of his hair (or it wasn't in his exam :D ).

SlowDragon profile image
SlowDragonAdministrator in reply to buddy99

20% Patients with no thyroid can not regain full health on just Levothyroxine

ncbi.nlm.nih.gov/pmc/articl...

Indepth research into T3/NDT - very positive

ncbi.nlm.nih.gov/pmc/articl...

thelancet.com/journals/land...

pbs.twimg.com/media/EF3KpVd...

Levothyroxine mono therapy does not resolve all symptoms

ncbi.nlm.nih.gov/pubmed/299...

Improved quality of life and no increased risk

ncbi.nlm.nih.gov/pubmed/298...

bmcendocrdisord.biomedcentr...

buddy99 profile image
buddy99 in reply to SlowDragon

Wow, so much research out there! Thanks for sharing. I really wish I could share this with my doctor.From what I understand it can take up to 20 years before research hits the basis (eg the medical practice) and sometimes it is even suppressed.

SlowDragon profile image
SlowDragonAdministrator in reply to buddy99

If you’re in the UK there are endo’s who will prescribe T3

Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists

buddy99 profile image
buddy99 in reply to SlowDragon

Thank you, SlowDragon. You are trying so badly to help me. I appreciate this so, so much. Unfortunately I live in Manitoba, Canada. I have combed through lists of doctors knowledgeable about Hashimoto's (and unafraid of NDT or T3 supplementation) and there seem to be none here. There are in the provinces east and west of here. I have consulted one. However, he got in trouble with Manitoba Health for all his testing and had to send me back with suggestions for my doctor here (fT3 too low, needs to be addressed; CBD prescription for pain etc.) but he did not want to give it to me in writing. He just wanted me to ask my doctor. Well, my doctor here flipped out on the CBD and that was the end of it. I look forward to moving to a different province when I retire. By the way, my daughter is going through the same ordeal. She is a veterinarian and can not believe what's going on. But she is just as helpless. We'll move away together in a couple of years if things have not improved. Again, thanks so very much for trying to help me. <3

SlowDragon profile image
SlowDragonAdministrator in reply to buddy99

Very active Canadian thyroid association

Few links

Canadian Thyroid association

Low TSH

thyroidpatients.ca/rational...

Low FT3

thyroidpatients.ca/2019/12/...

thyroidpatients.ca/2019/12/...

Osteoporosis

thyroidpatients.ca/2018/07/...

buddy99 profile image
buddy99 in reply to SlowDragon

Thanks again. You are phenomenal!

Lora7again profile image
Lora7again in reply to buddy99

A lot of us get the same response from doctors here in the UK. My so called expert Endocrinologist offered me counseling when I felt really ill with a TSH of 9. I then walked out of his clinic never to return. I also tried to show my GP some information I had printed off from Thyroid UK because my T4 and T3 were very low in the range and I had symptoms. He just brushed it aside because they have to stick to NHS guidelines and will only go by the TSH. My TSH was 0.80 at the time and now it is 0.38 and I feel well. Which shows just how different we all are.

SlowDragon profile image
SlowDragonAdministrator in reply to buddy99

Important to supplement magnesium, especially if on high vitamin D dose

Coeliac diet low in magnesium

theceliacmd.com/magnesium-d...

Hashimoto’s patients frequently need many

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

humanbean profile image
humanbean

You might find the following thread of interest :

healthunlocked.com/thyroidu...

I'm absolutely shocked that an endocrinologist can tell you that T3 has no function. The body doesn't make anything for no reason and that includes T3. T3 is the active thyroid hormone needed by every single cell in the body.

This research article states that in myxedema crisis/coma (severe hypothyroidism that has a high fatality rate) if the patient doesn't respond to T4 then T3 should be added to the treatment. Now why would endocrinologists add T3 to a treatment if it serves no purpose?

ncbi.nlm.nih.gov/books/NBK2...

You might like this article too :

ncbi.nlm.nih.gov/books/NBK2...

I got the above article links from this link which is well worth saving :

ncbi.nlm.nih.gov/books/NBK2...

To look for info on T3 in that book link you should search for references to liothyronine and triiodothyronine.

thyroidnodules profile image
thyroidnodules in reply to humanbean

this is so true about the docs not thinking t3 is of any value. i didnt get better on levo alone and decided to self medicate with thiroyd ndt and after getting my dosage right did very well and felt normal. i cannot get thiroyd any longer and my endo reluctantly agreed to trial me on t4/t3 - he gave me a low starting point of levo of 50mcg and 20 t3. i didnt feel well and raised my levo to 75mcg and reduced my t3 to 15mcg and i feel well on that. when i told him i changed the dose and felt really well, he went quiet and said i was to take my levo/t3 combo in the morning (i take mine before bed) and to take the dose they recommended as my tsh was too low. in the letter he wrote to my gp he told my gp that i changed my dose myself and i felt "fairly" well. they dont care how you feel - they only want your tsh to be at an "acceptable" level for them. my endo also said the t3 is irrelevant and so doesnt test it. Their attitude is actually quite incredible - they scare you with "more risk of a stroke, heart problems etc". i am at the stage that i am fed up pussyfooting around them and really feel like telling them what i think even although i know they will make life difficult for me

waveylines profile image
waveylines in reply to thyroidnodules

Am sorry to hear this but sadly not surprised. Its so shocking that the endo thinks a ft3 is of no relevance......We cant live without T3....... so yes in your shoes I would give him a piece of mind too. Ho are these people in practise.....lloh yes I know they are supported by the bogus philosphy that has grwon aroind the treatment of hypothyroidism......its like the Emperors clothing - story - gets mor ludicrous by the year.....sigh!!!

buddy99 profile image
buddy99

Thank you. Yep, I've heard the most incredible things from some doctors. And every time I tried to cautiously share my knowledge, backed up by research, I had a very angry doctor on my hands. Maybe I don't know how to talk to doctors appropriately. I don't know. I'm not usually a confrontational person. But I have decided to not talk anymore. I have decided that I have to do what I can without a doctor's help. And that's just it.

Localhero profile image
Localhero

As a side issue to your main question here, it sounds like your doctor is gaslighting you. ‘Gaslighting’ is a form of manipulative behaviour intended to assert control by making the recipient doubt themselves or even feel crazy. As well as getting your facts clear - which you already seem to have and if not have some great advice here to supplement - it might be an idea to read up on gaslighting and learn some ways to assert yourself to get what you need and not what your doctor decides you need. Sadly I’ve come across this time and again from my own doctors and have had to on occasion seem annoying to them in order just to get appropriate treatment.

Here’s just one link:

google.co.uk/amp/s/www.heal...

Lora7again profile image
Lora7again in reply to Localhero

Having worked with a lot of doctors when I was employed by the NHS some of them have the "God Complex" and they are mainly consultants but a few GPs can also have it. I personally don't take any crap off my GP ... excuse the language. I rarely see him but in the past I have seen him visibly sink in his chair when I walk in lol I can imagine he is thinking "Oh no not her again" Probably because I am not in awe of doctors like some people are. I am not rude to them but if I disagree with what they are telling me I will tell them so. A doctor is here to treat you and you can listen to his/her advice and it is up to you if you take it. A few years ago I bumped into a GP who had misdiagnosed me with the menopause so I confronted her about and told that I actually had thyroid disease not the menopause. She had not spotted I had a suppressed TSH of 0.002. She listened to what I said and then said nothing and walked off. I think she didn't like being told that she had made a wrong diagnosis.

Localhero profile image
Localhero in reply to Lora7again

I’ve had similar issues. Been told my tiredness, weight gain and cholesterol issues were “just menopause” and told to take statins. When I insisted there was more going on, my GP referred me to a lipids clinic 🙄. I ended up finding a private Endo who diagnosed my thyroid issues.

Separately, I had an abnormal smear some years ago and my doctor said, nothing to worry about, it’ll sort itself out and we'll check it again in six months. Because of a family history of uterine cancers, I was not so sure. I asked for a referral to a gynaecologist and was repeatedly refused. But I stood my ground. At the first appointment with the gynae, I told him about my doctor’s standpoint. He said, “well I’m glad you pushed because this is serious and needs immediate surgery”. I honestly believe I’d be dead now, had I not listened to my own instincts and stayed pushy.

Lora7again profile image
Lora7again in reply to Localhero

I was actually admitted to hospital because another GP injected me with Diamorphine without checking my records which said I was allergic to it. I was rushed to hospital by ambulance with the lights flashing and I thought I was going to die. I could have sued them because of this but I didn't. I did complain to my surgery and had a letter of apology from them. The GP who did it retired shortly afterwards.

JaneChapple profile image
JaneChapple in reply to Lora7again

God God Lora7again - but I bet he still got his great fat pension. Unfortunately I dont think suiing would have worked because they always, always cover their own backs. The only gope is that he was forced to retire early?!

JaneCxx

Lora7again profile image
Lora7again in reply to JaneChapple

I should have said it was a woman ... sorry.. Also when I was wheeled in at A&E the nurse said "What GP has been giving morphine to a patient when it should only be given in a hospital?" I did smile when she said that because a lot of nurses do know what doctors are like.

thyroidnodules profile image
thyroidnodules in reply to Localhero

yes gaslighting seems to be a skill most gp's and endos have acquired throughout the years. thank heavens for this forum. most endos are only skilled in treating diabetes - i have no trust in them after researching the subject of thyroid hormones

waveylines profile image
waveylines in reply to Localhero

Oh so true! I remember vividly when I stood up to the senior GP in the practise and explained to him about thyroid blood test results he was so annoyed that he told me I had failed my diabetes test and was diabetic! I was shocked and said. Oh my goodness what happens now? Nothing he said. So I said why? He said Cos Ive spent too much bloody money on you already. I got a copy of the blood test and I hadnt got diabetes- my sugar levels were perfect. Bonkers! Ive never looked but I bet that 'diagnose' is'nt in my notes! No ones ever mentioned it since! Haha...

buddy99 profile image
buddy99 in reply to waveylines

Money seems to be another excuse alright. I have been told more than once that I was wasting tax payers' money. But to tell a patient they have diabetes when they don't, just out of spite, that's............wow..........no words. I had one doctor who consistently put false things into my record culminating in writing that I had declined a test that, in reality, she had been unable to do. The kicker was, though, that at my next visit she had forgotten and held me responsible for not getting the test. And she was not nice about it. She was super sweet when she realized her mistake, though. It was a coincidence that I had had access to my record prior to my visit and had already seen what she had done. Everybody I talked to said to report her and I did get in touch with the College of Physicians, but never followed through because the doctor was young, she had just started in practice, had three little kids and was probably already stressed out like crazy. For a brief moment, when she attacked me about "declining the test last time" I very much regretted that I had not reported her. I did leave that practice, though, after 25+ years of being a patient there. I used my age and distance to that doctor to be assigned a doctor near me. But her breech of my trust could just not be mended. And I now know that this is what doctors can do, on top of everything else. From my posts you have probably deducted already that my relationship to doctors is that of a beaten dog. :D

tattybogle profile image
tattybogle

Hi buddy , someone on here 'Hashihouseman' i think , has a theory about splitting daily Levo dose, possibly raising T3 . might be worth looking him up and see if it seems logical to you.

I used to split my dose 7am/2pm years ago and i did think it helped with energy in late afternoon. i stopped bothering when i learned about how long levo lasts in the blood, but recently i have started doing it again 7am/9pm. it's too early to be sure of result yet, as im stuggling to get enough exercise (due to my depressed knee :) ) and not had blood test yet .

But it's an interesting theory- basically, large dose T4 in one go temporarily lowers Tsh , Tsh drives conversion through deiodinase, so keeping tsh higher leads to better conversion of T4 to T3 .

I've possibly mangled his logic a bit here so don't quote me , my brain hasn't woken up fully yet even though the sun has been up for hours here. I guess it's just coming up on you over there ?

Hope it brings you a lovely day ,beautiful cloudless skies over here.

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