Doctor says T3 is unnecessary

[Hamsters5]

I’ve got an underactive thyroid and have severe fatigue as well as other symptoms (dry eyes, weight gain, low immune system, eyebrow hair loss).

I started levothyroxine about 3 years ago and am currently on 125mcg. Apparently I should have started treatment in 2014 after repeated infections and a blood test showed my thyroid was low, but the doctor just gave me antibiotics.

It seems to be getting worse. I try to fight it with exercise and eating healthily. In January 2023 I was a stone lighter than now and was walking regularly, had even started doing a bit of running. But fatigue means I struggle to find time to exercise as I can barely cope with my job even though it is sedentary and WFH.

My TSH levels were 2.96 (0.27-4.2) in August 2023 but had risen to 4 by November 2023.

The results in August were from a paid-for Medichecks test.

My free T3 was 4.2 (3.1-6.8).

My free thyroxine was 20.9 (12-22).

My thyroglobulin antibodies were 581 (0-115).

My thyroid peroxidase antibodies were 183 (0-34).

I think I may have Hashimoto’s.

I could lose my job over this as I feel slow and stupid and keep going to sleep in meetings (using Teams but it’s hard to mask). I think I may need T3. I had another doctor appointment this morning and asked to be referred to an endocrinologist. This brings me to my question.

The doctor said that she does not know of any thyroid patients that need T3 and that if levothyroxine doesn’t help me, my fatigue must be due to something else. This seems to contradict what I have read on this site. Should I continue asking for a referral to an endocrinologist? She wants to do another blood test and will then refer me if I want.

[jimh111]

Stress the urgency and cite guidelines that state you should be given a trial.. Try to find an endocrinologist who is likely to prescribe.

[Buddy195 Administrator]

Welcome to the forum Hamsters5,

Yes antibodies signify an auto immune thyroid condition, aka Hashimotos.

I would definitely push for an endocrinology appointment regarding a trial of Liothyronine (as GPs cannot authorise this without endocrinology consent). Some endocrinologists are more supportive of combination treatment than others.

A list of thyroid -friendly endos (NHS and private) can be requested by contacting TUK:

thyroiduk.org/contact-us/ge...

If you are considering a private referral, you can also start another post asking members to name an endocrinologist in your area. Admin will close this post to replies as correspondence needs to be via private message. With any recommendation that you get, it is advisable to complete further research yourself before making a decision.

It is a good idea to have key vitamins (ferritin, folate, B12 and vit D) tested (and share results) as these support thyroid health and are often lower with those of us with Hashimotos.

Have you ever trialled a gluten free diet? Many with Hashimotos find this helpful. You can ask GP to do a coeliac test whilst still consuming gluten. I’m not coeliac, but (like many others here) am gluten intolerant.

[Hamsters5 in reply to Buddy195]

Thanks Buddy195

My folate, B12 and vitD were tested in August last year with the Medichecks test. Folate and B12 were ok but vitamin D was a bit low so I've been taking supplements, in the afternoon so it doesn't interfere with the levothyroxine does in the morning.

Does the gluten free diet have to be strict? I have cut down my gluten a bit by rarely eating bread and having oat-based cereals instead of wheat. I don't want to give up porridge as it is healthy.

I'll push for the endocrinology appointment next time I see the doctor. I can't afford private though I may have to consider it as otherwise I could lose my job.

[Buddy195 Administrator in reply to Hamsters5]

A GF trial needs to be strict elimination of gluten for 2-3 months to see if this benefits you. You can eat porridge- GF oats are readily available (but not wheat/ barley)

It’s worth asking for member recommendations for endos in your area/ who are open to prescribing combination treatment.

[greygoose]

The doctor said that she does not know of any thyroid patients that need T3 and that if levothyroxine doesn’t help me, my fatigue must be due to something else.

Oh, this is sooooo typical. It's always due to 'something else', except when you want them to investigate 'something else', and then it's all down to your thyroid! They like to have their cake and eat it too. And they're either very ignorant or lie through their teeth!

And I've heard that line so often - I've never know a patient that... (add your own embelishment) didn't do well on levo, put on weight with hypo, lost their hair, suffered from fatigue... Whatever suits the occasion. And why are you so unique? Because the doctor never listens to what his/her patients are telling them.

T3 is the active thyroid hormone needed by every single cell in your body to function correctly. It's low T3 that causes hypo symptoms. And you are a poor converter - as most Hashi's people are. So, you most certainly do need T3 in order to be well. Don't believe a word she says!

[Hamsters5 in reply to greygoose]

Thanks greygoose

The odd thing is, she is normally a good doctor who does not fob you off, and she seems to genuinely believe what she is saying. But it makes logical sense that I am not converting T3 so I will push for the endocrinologist referral.

[Hamsters5 in reply to Hamsters5]

sorry converting T4 to T3

[SovietSong]

Defo looks like you need a little T3 added to your levo.Those results from last August show T4 about 90% but T3 just 29%.Not dissimilar to my own results before I added T3 four months ago.The addition of 6.25mcg daily has seen my T3 levels rise from 54% to almost 90%.I had all the symptoms you mention above weight gain ,fatigue etc.I now wake refreshed every morning,have loads of energy,have lost the weight I put on in the last two years and suffer no more from brain fog.Don’t be fobbed off by doctors telling you it’s depression and sending you on your way with painkillers and antidepressants.

[Hamsters5 in reply to SovietSong]

thanks SovietSong I hope I have a similar story in a few months' time!

[arTistapple]

There are some organisations beginning to understand that poor health not being properly addressed by our NHS is becoming a huge factor for individuals, families and even the wealth of the nation. Saw a good article this week in our local paper from one of the major trade unions. Another article about ‘sick note’ culture.

Things are beginning to move but not quickly enough for me. Had to leave my job twenty years ago. No diagnosis until many years later.

[Hamsters5 in reply to arTistapple]

I am really struggling with my job arTistapple . I have an appointment with an endocrinologist in a couple of months' time so hopefully things will improve for me. I can't afford to lose my job.

[arTistapple]

Hamster although losing my job over 20 years ago in similar circumstances, I still find I am in pretty much the same situation now, as I was then. I have a long awaited endocrinologist consultation coming up very shortly. Your blood tests look broadly similar to my own but better!

Really it’s something called Low T3 Syndrome. It’s hardly likely a mere medic has heard of, or bothered to understand it, such is the anti T3 lobby in the UK or mostly anywhere else frankly. It’s not bringing about fast moving change .

I have no idea how I will get on at this consultation but I will be posting afterwards. I might pick up a ‘tip’ which might further your own journey. So many false dawns. We need a breakthrough somewhere, sometime.

[Hamsters5]

arTistapple I've got my endocrinologist appointment on August 9th. Hopefully we will both get some proper help. I will post back on here.

I have noticed one little thing that helps. I gave up caffeinated coffee months ago as caffeine is supposed to inhibit absorption of levothyroxine. Last Saturday I had a real coffee and it was like a miracle drug. For a few hours I felt more normal, fully awake, even my joints stopped aching, skin and eyes less itchy. I had another coffee today and the same thing happened. If I kept drinking coffee my tolerance would return but I will keep this in reserve for special occasions like job interviews.

[arTistapple]

I gave up caffeine a long time ago - at least thirty years. Previously I had pretty much been ‘running on it’. My body was ‘done’. Oddly enough, recently I had to have a CT Scan and I got a beta blocker injected. For about 24 hours after it I felt ‘newborn’. Everything was in 3D Technicolor and my body worked the best, apart from when I did well on T3. It was fab - and I am always extremely circumspect about drugs.

Anyway I will be looking out for your reporting back to the Forum. Good Luck.

[pennyannie]

Hello Hampster :

Once taking any thyroid hormone replacement we generally feel best when the TSH is towards the bottom of the range and under 1 - the TSH should be kept under 2 - as at 2 and above you will likely be feeling symptoms of hypothyroidism creeping in -

and with a TSH of 3 - this is when treatment for hypothyroidism used to be commenced.

We generally feel best when our T4 is up in the top quadrant of its range at around 80% with the T3 tracking behind at around 60/70% through its range ;

Currently your T4 is at 89% with your T3 tracking at just 30% showing very poor utilisation, absorption , conversion of T4 into T3.

The accepted conversion ratio when on T4 only is said to be 1 / 3.50 - 4.50 T3/T4 with most of us feeling at our best when we come in this little ratio at 4 or under - so if I divide your T3 into your T4 I'm getting your conversion ratio at 4.97 - so wide of the centre and confirming that you are struggling on T4 monotherapy.

No thyroid hormone replacement works well until the core strength vitamins and minerals are up and maintained at optimal levels - so we need optimal ferritin, folate, B12 and vitamin D run and we can advise were ' optimal ' results need to be as just being in a range somewhere is not conducive to good health and well being.

I hope this endo you are waiting on has been recommended and would consider seeking out a different doctor for support - the body runs on T3 not T4 and T3 very necessary - rather than unnecessary stupid comments from someone with no idea on thyroid health nor patient well being.

[Hamsters5 in reply to pennyannie]

Thanks pennyannie those calculations are very useful. I think I'll print them out and take them to the endocrinologist, but I'll only bring them up for discussion if he/she seems to be fobbing me off.