Latest test results

[Twitchen]

I have just got back from seeing the endocrinologist and my latest test results are as follows:

TSH 1.81

FT4 7.4

FT3 5.3

He didn't seem at all concerned that my FT4 is actually below range (7.9-20.0).

I currently take 50mcg thyroxine and 20mcg liothyronine (2 x 10mcg doses) per day.

He always stresses that it is only the TSH figure that is of any value, as this is the key indicator of what is going on in your cells.

I know he doesn't like me being on the T3 and says that he has never come across anybody before who feels any difference through being on it as opposed to just T4.

I am wondering if I should just give in and go back onto T4 only, as he was implying that the effects of taking T3 long term are not really known.

Is anyone else on a combination of the two and, if so, how are you getting on?

[bluebug]

If you feel fine or better on T3 STAY ON T3.

The reason he's coming out with the cr*p about no-one feeling better on T3 is because T3 is very expensive and the entire NHS is trying to save money.

Not wanting to frighten you but if you come off then you may end up having to buy your own T3 as the NHS will not prescribe it to new patients, and if you come off you will be considered a new patient.

Oh and if he's only concerned about your TSH level then it's too high. It should be around 1 and for someone on T3 I would expect it to be lower than 1.

[Twitchen in reply to bluebug]

Thank you for the quick reply.

Yes I had thought that if I stopped it and felt worse then they would never let me have it again I used to get TSH readings of 0.06 and lower, so the 1.81 is definitely quite a bit up for me, but then I suppose it is well within range. It was the FT4 figure that threw me; I was surprised it was so low that it was not even within their range.

[bluebug in reply to Twitchen]

How are you feeling?

[Twitchen in reply to bluebug]

Not too bad except for the neuropathy in my lower legs and feet, which he insists is absolutely nothing to do with hormones, but I am not so sure.

Also I still find it hard to lose weight

[bluebug in reply to Twitchen]

What are your vitamin B12 levels like?

[Twitchen in reply to bluebug]

Very good as I supplement with Solgar sublingual methylcobalamin. In fact I have been told that my level is too high (circa 900) and I shouldn't keep using it.

[SlowDragon Administrator in reply to Twitchen]

Are you also taking a good vitamin B complex?

This article very interesting about neuropathy being due to low B5.

Taking Vit B complex (important to treat all the B's together) has completely cured my neuropathy. Raising all the other B's also revealed I was low in B12 - now improving further with B12 supplements

drgominak.com/vitamin-d-hor...

[Twitchen in reply to SlowDragon]

Thank you, I will certainly give this a try. Can you recommend a really good B complex? Do you also take the vitamin D supplement mentioned in the article?

I get a bit freaked about taking too many supplements!

[SlowDragon Administrator in reply to Twitchen]

I prefer Jarrows B right

Or other one often recommended is

Thorne basic B

[SlowDragon Administrator in reply to Twitchen]

Yes...if you read my profile ....you will see I started with low Vit D, (showed up in my private Blue Horizon test - NHS never checked it)

my endo said I should address and improve the low D. That revealed low magnesium.

The two combined made me realise I had malabsorption issue. Went gluten free ( stunningly positive result) ......recent endoscopy.....coeliac diagnosed

My gastro very keen I should continue to take magnesium, Vit D & selenium.

Also taking K2 (as recommended if on Vit D)

My Vit D supplement lead after about 6 weeks to peripheral neuropathy - ie I assume low B5 (as per that article). Adding B complex .....week later intense pins & needles - ie low B12 revealed....so added B12 oral mouth spray.

I started over twenty years ago with terrible pins & needles when first had issues taking Levo (This was dismissed as "anxiety" at the time ....now know it was low B12) probably all due to silent coeliac causing low nutrient levels.

With addition of each supplement, I have felt less unwell, walking improving slowly and feel stronger. Been struggling intermittently to walk for years on Levo - but been much worse since last winter - was looking like being in a wheelchair again (winter I now realise was always worse so may be Vit D level related)

Hey ho ....onwards and upwards 😃

[Twitchen]

Trouble is in this country endos have been trained (programmed) to only recognize the TSH result. Surely one day they will realize that just throwing thyroxine at people isn't enough to make them feel well.

Isn't there any ongoing research into thyroid problems? It seems that the treatment hasn't changed for decades.

[greygoose]

Oh, your endo is a real comedy act, isn't he! Should be on the stage! The only reason - if he's telling the truth - that he's never come across anybody before who feels any difference through being on it as opposed to just T4, is because he never listens to his patients! Either that, or he never gives them a high enough dose to feel well.

As for the TSH being the key indicator of what is going on in your cells, it gives you no idea of what is going on in the cells, only what is going on in the pituitary. And the pituitary is a bit like 'I'm alright, Jack, never mind you'!

Do not give him the satisfaction of giving in and losing your T3! If they don't like what they have to pay for it, let them negociate a price. It's hardly your fault. And, don't worry about the FT4, it's bound to be low when you're taking T3 because the body only hangs on to what it needs, and it doesn't need as much.

[Twitchen in reply to greygoose]

Thanks for your reply.

So the FT4 level isn't important then, that's a relief. I was thinking they all had to be within the specified range.

My endo's speciality is diabetes not thyroid, so he is not prepared to listen to any comments I make as he still considers himself the expert. That's the trouble isn't it, you simply cannot really argue your corner with a consultant.

They just don't seem to appreciate that if you have a particular condition then you make it your mission to read everything you can about it because of course it is in your interests to do so.

I even tried to tactfully mention the fact that there are consultant endocrinologists in this country who do not believe the TSH result means much, but all to no avail.

It is very frustrating, but I suppose he did at least let me have T3, which is a good result compared with so many people who just get refused it.

[greygoose in reply to Twitchen]

It is indeed a good result!

The blood tests were designed for people undiagnosed or taking T4 only. They don't really correspond to people on T3 of any form. But doctors have yet to discover/understand that! lol