New consultation with Endo: Hi guys, not sure if... - Thyroid UK

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New consultation with Endo

Traceydg profile image
17 Replies

Hi guys, not sure if advice received after latest consultation.

After look at my most recent bloods my Endo has advised that I reduced my liothyronine and increase my Levothyroxine. I'm confused, why would he recommend reducing my T3 meds when it's so low.

TSH. 0.01 (0.27-4.2)

T4 5 (11-22)

T3 3.1 (3.1-6.8)

Serum sex hormone binding glob

200 (32.4-128)

He thinks my SeX hormone is binding with my thyroid and has advised that I stop using HRT. To help with hot flushes he has suggested using beta blockers. My concern is him wanting to reduce my T3. I would have thought I needed to increase my T3. Any advice is greatly received.

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Traceydg
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17 Replies
SeasideSusie profile image
SeasideSusieRemembering

Tracey

He wants you to reduce your dose of T3 because the NHS want patients off T3 because it's too expensive and they aren't looking for cheaper suppliers (ie source from Europe where it's cheap).

Your dose will be reduced, you will feel worse and become symptomatic, then you will be told T3 doesn't work for you.

What dose of Levo and T3 do you take?

With such a low FT4 it's understandable that he wants to see it higher and you may feel better with it higher. I take a Levo/T3 combination and I need FT4 above half way through range with FT3 nearer the top of range.

With FT3 at the very bottom of the range it seems as though you do need more T3 though.

I don't know anything about SHGB and if it's affecting anything.

From your previous post I see that SlowDragon gave you information and links about Hashi's and gut/absorption problems. This could be part of your problem so have you looked into that?

Traceydg profile image
Traceydg in reply toSeasideSusie

It's a private Endo that I see and I mentioned absorption to him and he quickly dismissed the idea. he seemed to think that if I wasn't absorbing my meds I wouldn't be absorbing food therefore I would be losing weight (definitely not the case, my weight is creeping up )I'm currently taking 150 Levo, he wants to increase to 200 and current T3 is 20 on a morning and 10 mid afternoon, he's wanting to decrease to just 20 and split morning and mid afternoon. I'm seeing my gp tomorrow so will ask about the antibodies and request a blood test, will mention b12, folate and vit d

SeasideSusie profile image
SeasideSusieRemembering in reply toTraceydg

Does your endo also see NHS patients?

Traceydg profile image
Traceydg in reply toSeasideSusie

Yes he does. I feel like I'm banging my head against a brick wall. I know my body and it it's working right, why don't they listen

SeasideSusie profile image
SeasideSusieRemembering in reply toTraceydg

OK, so your endo is toeing the NHS line even though he is seeing you privately and this could be the reason for him wanting to reduce your T3 dose. He may be pro-T3 but they don't seem to know an awful lot about how to treat anything other than a simple case where only a very small amount is needed and your levels satisfy them.

However, with 150 Levo plus 30 T3 one would expect to see your Free Ts much higher. I would pursue the gut/absorption route because this could very well be at the root of your problem. Ask GP to test for malabsorption and read up on SlowDragon's links.

Traceydg profile image
Traceydg in reply toSeasideSusie

I have queried his recommendations and I'm awaiting a reply. Will mention all of the above to GP, thank you

greygoose profile image
greygoose

Do you leave at least four hours between your thyroid hormone and your HRT? Or is your HRT patches or cream? If the answers to any of those questions is yes, then it won't be interfering with your thyroid hormones.

Your endo does sound like a bit of an ignoramous, doesn't he. Losing weight is definitely not an option with those low Frees, but has he actually tested your nutrients - vit D, vit B12, folate, ferritin - to check how well you're absorbing? Because it certainly looks to me like you have an absorption problem. I really get the impression he has no idea what he's doing, and is just making it up as he goes along. And you're paying him for that?!?

Traceydg profile image
Traceydg in reply togreygoose

He has asked for any of the above to be checked. These were checked by my gp last year. All results were on the low side but within normal range so

Doctor has acted on the results. My hrt is a patch. Can anyone recommend an endocrinologist who does know what he's talking about in North Yorkshire

greygoose profile image
greygoose in reply toTraceydg

OK, so with a patch, there is no way your sex hormones can bind with your levo! He really doesn't know much about hormones at all. I would ignore everything he says, if I were you.

But, I'm afraid I can't recommend any endos anywhere. You'd have to start a new question asking people to PM you any recommendations. :)

lolajone profile image
lolajone in reply togreygoose

Re first sentence above, can you please explain why having patches would make a difference? I thought oestrogen blocked TBG and it all takes place in the blood? Interested because was considering this theory for my ongoing fatigue? Thanks

greygoose profile image
greygoose in reply tololajone

Oh, well, perhaps he's right, then. I was just thinking that with patches, it didn't enter the gut.

ncbi.nlm.nih.gov/pubmed/151...

Well, according to this, oestrogen increases GBT, meaning that more T4 is bound, so less FT4. I suppose that he thinks that because your FT4 is low. But, he's not taking into consideration that when you're taking T3, your FT4 is going to be low, anyway. Plus you don't need as much T4 because you are taking T3.

What are you taking, exactly? What are your results?

lolajone profile image
lolajone in reply togreygoose

The article refers to transdermal hrt not affecting t4. I would have thought patches would be classed as transdermal. Ok then back to the drawing board.

Blood results from last week TSH 1.09 and they didn't do t3 or t4.....great. I take 20mcg t3 so TSH absolutely meaningless. Plus 100 t4. No recent d3 etc according to GPS I had them done a couple of years ago so no need to repeat. Too tired to argue.

greygoose profile image
greygoose in reply tololajone

I really would think that it's more likely to be low T3 causing the fatigue, rather than the HRT affecting T4 in some way. That just sounds like an excuse, to me.

Traceydg profile image
Traceydg in reply togreygoose

That's my thinking too. So very disappointed with my consultant and his decision to reduce my T3 medication. I have emailed he back saying that I'm my first consultation that it appears I'm a poor t4 to t3 converter so what's made him change his mind.

greygoose profile image
greygoose in reply toTraceydg

They just don't understand. :(

AlisonL profile image
AlisonL

My experience was that I agreed to reduce my T3 on the advice on a private endo who also sees NHS patients. He tried to convince me that it was worth trying. He wanted my TSH not to be suppressed, and believed that was what was causing my symptoms. All it did was made me more unwell and I have spent nearly a year recovering from the results of the reduction. Despite my results still being "normal", I have put on over a stone and the fatigue and pain was the most extreme I have suffered in years. I wanted to give it a try to keep him happy more than anything, but had no idea how badly it would affect me and for how long. I am now kicking myself for agreeing to it.

Luckily he agreed to increase it again, but from personal experience would strongly advise you to avoid reducing if it has helped you in the past. Good luck.

SlowDragon profile image
SlowDragonAdministrator

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies.

Plus vitamin D, folate, ferritin and B12.

Essential to test thyroid antibodies, plus vitamins

To have such low FT3 strongly suggests gut issues

Private tests are available. Thousands on here forced to do this as NHS often refuses to test antibodies

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting.

If on Levothyroxine, don't take in the 24 hours prior to test, and if on T3 don't take in 12 hours prior to test, delay and take straight after

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

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances too, especially gluten. So it's important to get antibodies tested.

If you have Hashimoto's, low vitamins and/or gluten intolerance then taking T3 is unlikely to work well

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