Nonsensical Endocrinology advice?

[goofball]

MY Doctor has been liasing with Endocrinology at my request as the result of the last blood tests that I had.

My blood results were

TSH -2 (.24-4.2)

T4 -24 (12-22)

T3-3.0 (3.1-6.8)

I have Hashimotos, as my doctor knows.

I requested advice as I wanted to have a combined T4 and T3 drug as recommended to me on an earlier post, having been to endocrinology a couple of years ago, to be given short shrift the doctor decided to seek advice.

Today the doctor actually told me that they are only interested in the FT4 result with Hypothyroid and not at all interested in my T3.

The doctor was asked by Endocrinology if I took my medication regularly as they thought this was the reason for my out of range FT4. Of course I take it regularly!

Please tell me this is nonsense.

I think that since being on 100 mg of Levo from 75, whilst this has got my TSH down from 5 + to 2 has made me very sluggish and lethargic in the afternoons, along with my out of range T3, which according to the doctor, they are not interested in.

How can this be?

So this doctor of mine is going to report this back to endocrinology, this being as I am obviously not good enough to be referred.

If I went privately would I actually get the correct medication..

Any ideas would be great,

Thank you

[greygoose]

The doctor was asked by Endocrinology if I took my medication regularly as they thought this was the reason for my out of range FT4.

I think you're best off not seeing and endo that asks a question like that! If you weren't taking your levo regularly, your FT4 would be low, not high. Just goes to show the level of thyroid knowledge he has - zero - and he doesn't have much in the way of logic, either!

The question I would as is: how long a gap did you leave between your last dose of levo and the blood draw? Because according to those results, you are a very, very poor converter.

They just don't know anything about T3, they don't know what it is or what it does. What's more, they don't want to know because that would make things far to complicated for them, too much like hard work!

[goofball in reply to greygoose]

Yes I left at least 24 hours and took after the blood draw!

[goofball in reply to goofball]

And how does an endocrinologist get to being an endocrinologist without basic thyroid knowledge?

[fuchsia-pink in reply to goofball]

Because most of them are diabetes specialists, that's how!

Look your endo up and read the thumbnail biog on the hospital website. I'll bet s/he doesn't mention thyroid at all.

Is your GP any good? If so, you can explain

(a) that you clearly are a very poor "converter" - that is why your free T4 is over-range and free T3 under-range, which is why you aren't getting better

(b) you have lost confidence in the endo you have just seen - adding that you have now seen that they are really a diabetes specialist if my hunch is right - and you would like a referral to see someone else

And at the same time, email DIonne at Thyroid UK - [e-mail] - for the list of T3-friendly endos [as you have seen, many of them aren't] to see if there's anyone reasonably close to you AND in a sep post ask if members can recommend anyone near-ish to you

It IS possible to get lio on the NHS - but it can be really tricky and you really need your endo and your GP to be on side. Good luck x

[shaws in reply to goofball]

That's anybody's guess. My GP told me my TSH was too low and T3 too high and T4 too low.

I said, 'Yes doctor that's correct because I take T3 only, therefore TSH will be low as will T4.

He then went on to say, "but T3 converts to T4". I said "I'm sorry doctor that's not true. It is T4 that converts to T3 but because I take T3 the T4 and TSH will be low.

[Wired123]

I would suggest, if you can afford it, take your bloods and see someone privately. Preferably find a doctor who also practices on the NHS who you can later see on the NHS but at least you can get onto T3 treatment immediately as that’s what you need as your T4:T3 ratio is definitely too high indicating poor conversion.

[smilingjane in reply to Wired123]

Hello all, just joining this thread to let you know my experience. I sought out a private endo by putting a call out on here. He only does private work, not NHS. I chose him because of great reviews. Thinking well if I am prescribed T3 and have to buy my own then so be it.

However after my consultation my endo sent a detailed report to my GP suggesting that I am prescribed T3 with my T4 and specifying the dose. My GP took that on bourd and prescribed as my endo had suggested. GPs aren't obliged to adhere to suggestions I have read.

However My GP says that they are supposed to if an endo suggests, NHS or not.

So it's not clear cut. I think it seems to depend on the GP surgery you are in. I have a super doctor who is a partner in a v. large practice.

I can remember him po pooing T3 a year ago saying its just a puff with no lasting effect I wonder whether he still believes that 🤔

[Wired123 in reply to smilingjane]

interesting, as my GP and their in-house pharmacist have stated that they can only prescribe T3 if they receive a letter from the NHS and will not accept a private Endo's recommendation. I argued he's also GMC registered but to deaf ears.

Their recommendation is that I see an NHS Endo (at their cost) and wait months for the appt!

[smilingjane in reply to Wired123]

Hi DK

That is interesting.

I wish I had an answer. It could be that my GP is being kind to me but that sounds a little ridiculous. It seems crazy that there isnt consistency. I expect that one day there will be consistency. I just hope that it dosnt take too long. It seems there are court cases waiting in the wings re the situation with prescribing T3 fairly.

I hope you get some good advice and are able to see a competent endo.

😊

[shaws in reply to smilingjane]

I am always stunned when a GP makes a statement such as yours re T3. i.e.

"I can remember him po pooing T3 a year ago saying its just a puff with no lasting effect I wonder whether he still believes that"

The fact is that GPs seemed to be confused between T4 (levo) long-lasting and T3 (short-acting) but don't seem to be aware that synthetic levo is T4 alone and has to convert to T3 (Active Thyroid Hormone) and it is T3 that is needed in the millions of T3 receptor cells in our body, brain and heart need the most.

They cannot distinguish between an 'inactive hormone' T4 (supposed to convert to T3) and 'active hormone whichT3.

[smilingjane in reply to shaws]

I know Shaws

Thanks for coming in with that and making it clear for others too.

When is this ignorance amoungst our trusted GPs going to end!??

It is interesting that my doc said that and then went on to prescribe T3.

Presumably it was the prescribed under the policies of the pharmacy within the surgery.

It's been 5 months of T3 for me now and In still zilch in energy. I am noticing a little change in the last week though. Hormone changes and tweaking can take time 🤔

[shaws in reply to smilingjane]

I think you need a tiny increase in T3 and hope GP will do so. I think they're now nervous of prescribing T3 as they seem to have been told 'old wives tales' about it in order that they don't prescribe, so I'd request a small increase. The purpose of not splitting a T3 dose, is that it has to saturate all of the millions of T3 receptor cells we have, and then its work lasts between one to three days by 'sending out waves'. The link is by Dr John Lowe who was an Adviser to Thyroiduk.

tpauk.com/main/article/the-...

[smilingjane in reply to shaws]

Thanks for that I will read it.

I'm seeing Dr M (my endo) in 2 weeks. I'll order a T. test just before appointment. Have only just put T4 back up to the original taking before started T3. Shouldnt of reduced it really But hay ho, mistakes happen.

Am soooo looking forward to getting my energy back!!

Hooe your doing okay?

😊

[shaws in reply to smilingjane]

Yes, I'm fine thanks.

[smilingjane in reply to shaws]

😊

[smilingjane]

Hi Giofball

PM me if you want the details of my endo.

See my comment on this thread further down.

Jane 😊

[smilingjane]

Whoops! I mean further up

😊

[shaws]

I agree with greygoose 's statement. It is a great disappointment when referred to an Endo and then the door is shut in our face as if our disabling symptoms were not something to be relieved. Sometimes we feel worse than before consulting the Endo.

That's why many on this forum 'go it alone' with the help of members on here.

[goofball]

Thank you all, you are so kind and helpful x

[smilingjane in reply to goofball]

I would have been absolutely lost without this forum over the last year or so. I have learned a lot and the folk on here have encouraged me to research always .

Thank you everybody reading this 😊