Have broken my brain again, TSH and NICE

[Polo22]

So went looking for the bit in guidelines about how Doctors should take into account patients views etc before reducing dose.

Started to read their justification for treating based on TSH and their stating TSH should be in range and not suppressed.

So as previous posts, GP having hissy fit of TSH 0.01, and reduced my px without my agreement, after I informed her of my self sourcing T3, she had never heard of it.

Oh learned ones , please help it make sense, TRH (hypothalamus) stimulates TSH (pituitary ) right? stimulates Thyroid to produce T4 right?

So when there is no Thyroid to be stimulated to produce T4 , so the HPT axis is open ended.

Levo is substituted , right?

So , all things being equal , and neuro transmitters being sneaky little blighters is the answer to life the universe and everything , actually 42?

No seriously, why do they just look at TSH to decide if you are under or over replaced. Where is the actual evidence that suppressed TSH is bad, I could understand maybe if I had a thyroid and was relying on it for T4 and therefore suppressed TSH would result in what ? under production / over production.

Need to understand so I can confidently argue my case against the astounding ignorance of GP's. Surely without a Thyroid the axis is defunct , or at least the formula which is used to assess treatment, am I right or am I wrong Please Help

[Sparklingsunshine]

Even those of us with a thyroid still fall afoul of meddling medics. My meagre understanding is that once on a good level of replacement hormone the thyroid is for all intents and purposes redundant, since the body now has an extraneous source, ie Levo etc that keeps us going.

So it just hibernates pretty much. I still have mine but how much hormone it actually produces, if any, is the million dollar question. If the pituitary gland is happy with the amount of thyroid hormone in the blood then it doesnt need to send any TSH messages to the thyroid.

And if the TSH has been suppressed for a long time then it might never get back to a level GP's are happy with, despite constantly reducing a patients dose. So presumably some people's thyroid is comatose, not just hibernating lol.

It must be even more frustrating for those without a thyroid. You have my sympathies 😪

[Polo22 in reply to Sparklingsunshine]

You know ignorance is I guess bliss, at least for the Doctors, nlot so much us

[Charlie-Farley in reply to Polo22]

Hi Polo

There are two pinned posts that may be of use to you. One by tattybogle with loads of references about when TSH does not behave how the medical profession expects and one by me which is NICE and NHS Guidelines- the useful bits. TSH was never intended to be a management tool but some twit decided to make it so. It was a diagnostic for auto immune thyroid conditions, bearing in mind it tells you nothing about central hypothyroidism and the low TSH low free T4 profile indicative of central is unlikely to be picked up by a GP, especially by yours by the sounds of it. 🙄. To confound the medical profession yet further these routes to hypothyroidism are not mutually exclusive and we do not just form an orderly line to one or another form of hypothyroidism. Is it rare….. or rarely diagnosed? If you are not looking for it chances are you won’t see it and if you don’t even know it exists???

My TSH had never been that active. I never reached 10 in a blood test and was lucky I had symptoms that could be measured (very low heart rate) as well as low FT4 and slightly over TSH. I was started on levo and mismanaged thereafter until I found this amazing forum, who armed me with sufficient knowledge to self advocate and my hubby stepped into the breach to advocate for my first dose increase when I could barely string two words together.

I have also had concussion in the past and it is possible this may have damaged my pituitary in some way. It was a very big horse and the ground was very hard. It triggered shingles which erupted all over my body 24 hours later. Hmmmm lived experience I could have done without 🤣

[greygoose]

TRH (hypothalamus) stimulates TSH (pituitary ) right? stimulates Thyroid to produce T4 right?

And some T3, yes.

Levo is substituted , right?

Thyroid hormone replacement, yes.

why do they just look at TSH to decide if you are under or over replaced.

Because they believe that everybody has a perfect working pituitary - I read a case where a doctor actually said that! And because they just do not understand how all this works.

Where is the actual evidence that suppressed TSH is bad

There isn't any.

if I had a thyroid and was relying on it for T4 and therefore suppressed TSH would result in what ? under production / over production.

Under-production. The TSH does not have a negative force, and the thyroid cannot work without its stimulation. So, remove the TSH and the thyroid goes to sleep. But there was someone on here the other day - sorry, cannot remember names - whose doctor said that they have to raise the TSH quickly before it causes hyperthyroidism!!! Quite how they thought it was going to do that, I don't know, but just goes to show the level of ignorance we're dealing with.

Surely without a Thyroid the axis is defunct

It become defunct when you become hypo, because the thyroid cannot respond.

am I right or am I wrong

You're right. But their understanding of the whole system is so flawed that they do not have the wherewithall to work it out. They haven't read up on the subject as much as we have. They are just given a vague smattering of information in med school, and the rest comes from their over-active imagination. Like the doctor that 'explained' to me - with diagrams - how Hashi's makes you hypo. According to him, the antibodies form a hard crust around the thyroid so that the hormones cannot get out! I cannot imagine where he got that from, but I doubt he found it in any text book. 🤣🤣🤣

[Polo22 in reply to greygoose]

Oh my, you couldn't make this 💩 up , did he use crayons

[greygoose in reply to Polo22]

🤣🤣🤣 No, he only had a biro to hand.

[Polo22 in reply to greygoose]

Forgot to say thank you for confirming I am not completely losing it, still keep losing words though,

[JoJoloveschocolate in reply to greygoose]

Omg…that made me lol…😆🤣”hard crust around the thyroid…” was he getting the thyroid confused with a pork pie…😂😂

[Polo22 in reply to JoJoloveschocolate]

the thoughts this has provoked about this silly sod and his hard crust has given me the ick 🤢🤮

[greygoose in reply to JoJoloveschocolate]

🤣🤣🤣

[Gingernut44 in reply to JoJoloveschocolate]

That made me laugh out loud - something I really needed today. 🤣🤣🤣

[Polo22 in reply to greygoose]

so if there is no actual evidence re the dangers of suppressed TSH, why do they keep trying to use scare tactics about heart problems/ damage and bone damage

[greygoose in reply to Polo22]

Because they can't see the difference between a TSH suppressed due to hyperthyroidism (Graves') and a TSH suppressed due to thyroid hormone replacement - especially when taking T3. Nor do they understand that it's not the low TSH that is the danger, but the long-term, very high levels of T3. Tunnel vision, I think they call it.

[Charlie-Farley in reply to greygoose]

greygoose Polo22

I have a real issue with the the way many doctors view thyroid conditions on a line 🙄

Hypo————Euthyroid————-Hyper

It’s not a sliding scale - the route to being hypo (more than one) is not the same as the route to being hyper. None of these routes are mutually exclusive and thus this ridiculously over simplified model just feeds into a fundamental misunderstanding of thyroid disorders/diseases.

It leads directly to the incorrect assumption that a suppressed TSH in hyperthyroidism is equivalent in hypothyroidism, when as greygoose says it is too much T3 that causes the the problem in people with hyperthyroidism. If they would actually test for this they might actually realise. 😱

The NHS testing regime is so sparse as to be irrelevant in many cases - certainly not fit for purpose.

Thank goodness for private testing 🤗

[shaws]

I don't think that our comments may change the attitudes of the GPs at all.

Before the introduction of blood tests, our older GPs could diagnose a patient - just by taking account of the patient's symptoms and prescribe NDTs..

My Mother had pernicious anaemia (I do so too) and had regular B12 injections until GP told her, several years later 'your test is fine and you don't need any more B12 injections.

I told Mum "Oh that's good.

Unfortunately, it was not GOOD as the GPs statement caused my mother to develop cancer in her stomach. I had to plead for 'for more pain relief' whilst she was dying. You never forget that experience.

What a terrible experince and I, also, have P.A. (plus other conditions) but my GP ensures I get more frequent B12 injections.

[Rosebud1955 in reply to shaws]

The majority of these “so called” doctors are insensitive lunatics. They have no business practicing supervising the health of human beings. I’m afraid of them! They’re dangerous.

[Charlie-Farley in reply to Rosebud1955]

All the more reason for us to ‘gen up’ so we can defend our health. 😊👍

[pennyannie]

Hey there -

You are right -

though likely talked over as there is no acknowledgement that after a medical intervention and a major organ removed from the body -

as to what the brain / body makes of it all -

the thyroid - a major gland that you can't live without - removed - rightly or wrongly -

and generally mismanaged thereafter with limited blood test readings -

following guidelines that are not fit for purpose -

and in the most part prescribing limited thyroid hormones with no understanding of the body's physiology.

[Polo22]

Maybe the higher ups have realised now that if they admit the damage they have done they would be in deep 💩

[Hectorsmum2 in reply to Polo22]

I think you have hit the nail.

[Batty1]

I spent 7 years trying to figure why they only see TSH … fools

[Minimol]

I would dearly love to see some fact based evidence that a suppressed TSH is NOT dangerous. Mine has been suppressed for many many years now - almost since the moment I had my RAI treatment and plunged into extreme hypo as a result.

Frustrated that even my very well regarded Endo (on the good list) has referred me for a bone density scan “just to be sure” (???!!!) when he is himself prescribing me Liothyronine which I take with NHS Levo.

When the scan shows I do have some bone thinning, what do you think he will want me to do?