Phone call with doctor.: I've spoken to a,doctor... - Thyroid UK

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Phone call with doctor.

sobs1962 profile image
103 Replies

I've spoken to a,doctor from my GP practice this morning, who informed me that I'm no longer hypothyroid but in fact hyperthyroidism latest results 24/01/2022

TSH - 0.03 (0.35 - 5.50)

T4 - 19.4(10.0 - 20.0)

FT3 NOT TESTED.

I requested the thyroid bloods be done again as they were done without warning after taking my dose of Levo, eating both breakfast and lunch and whilst taking a biotin containing supplement and he agreed, however, I'm now extremely worried, they be prescribe me an antithyroid drug such as carbimazole and that would be disastrous and would probably push me into myxodema, followed by death. I was under the impression that ft3 should be tested if TSH is below range and mine definitely is, so we'll just have to see what happens, but still extremely worried about it all.

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103 Replies
PurpleNails profile image
PurpleNailsAdministrator

They are looking at TSH. The FT4 is in range not above and they FT3 hasn’t been tested. How can they say your have hyperthyroid.

How do you feel?

sobs1962 profile image
sobs1962 in reply toPurpleNails

My anxiety is very bad and when I attended surgery on Monday for blood test, my hands were shaking too, so don't know if that means the doctor could be right and I have lost weight recently without intending to.

tattybogle profile image
tattybogle in reply tosobs1962

well ...

a 'fine tremor' in fingers /hands is a known sign of overmedication.

loosing weight without trying could also indicate the same thing,

and increased anxiety can also indicate overmedication.

So whether it's right or not ..

if you turn up for a blood test displaying those three symptoms,

and your TSH is 0.03 which is about as low as it can be without being unmeasurable,

and you've just had a stroke ,which certainly won't be making them feel any more relaxed about putting their name on a prescription that they think might be making you overmedicated.

........they are going to feel a lot safer if they reduce your dose a bit.

If you really want to avoid a dose reduction, then a blood test at 3pm is a big mistake . You TSH will be at it highest around 8/9 am . it will be at it's lowest around 1/2pm. (it's not possible to be exact .. we are all a bit different, and it fluctuates a little every 40 minutes or so )

Not eating all day will not make any difference to this .. it will, just mean you turn up for the blood test in a right state , and are even more shaky ..... the phlebotomist will notice this and pass on her concern to GP .... adding more weight to what they already think ( ie. that you are overmedicated)

The best chance you have of avoiding a dose reduction is to have your blood tested as

early in the morning as you can manage , (and 24hrs after last dose of Levo etc etc )

But , be open minded .... if you do try a lower dose and the shaking reduces , then perhaps you have your answer.

sobs1962 profile image
sobs1962 in reply totattybogle

Thanks for that, maybe I should try being more open minded,but I just read so much on here about clueless doctors and endocrinologists that I think it's clouded my thinking, it's the constipation side of things that worries me the most as it's given me so much grief over the past 50+ years.

shaws profile image
shawsAdministrator in reply tosobs1962

Early a.m. the TSH is at its highest and that's why we recommend an early a.m blood draw.

If your TSH is low your other tests (Free T4 and Free T3) may also be low,

sobs1962 profile image
sobs1962 in reply toshaws

That's the problem, they will NOT test ft3 under any circumstances and it's a ridiculous situation but is driven by the fact that they may have to consider T4/T3 combination and that's too expensive, so I feel truly stuck.

Hi

I'm sure I've seen other, more experienced posters saying if you're hypo and taking medication you can't become hyper, just possibly overmedicated. Your TSH is very low but your FT4 is in range, just and of course there's no FT3.

They'll probably want to reduce your levo, but it's how you feel that counts. You can always refuse a dose decrease until ALL thyroid levels are properly checked by an early morning, fasting blood draw, with levo having been taken 24 hours earlier and no biotin supplements for several days. That's the only way to be completely accurate.

Just for the record, my latest private bloods from December showed my TSH was the same as yours, my FT4 was 17 and my FT3 was 4.7. So well in range and I feel OK, certainly not overmedicated.

shaws profile image
shawsAdministrator in reply toSparklingsunshine

We cannot rely upon GPs knowing much about anything to do with the thyroid gland which enables our bodies to function as normal from head to toe. Our brain and heart have the most T3 receptor cells.

It's like me saying to you when baking a cake: put oven at 200 but without giving any idea how/what ingredients are needed to produce a nice cake.

One of my GPs phoned to say

"your TSH is too low, your T3 too high, your T4 too low".

"Yes doctor that's because I take T3 only.

GP "but T3 converts to T4.

Me: No doctor that's incorrect.

I am fit and well and symptom-free on a low dose of T3.

Sparklingsunshine profile image
Sparklingsunshine in reply toshaws

Hi

It begs the question though, if thyroid symptoms and disease are so common why do doctors know so little about it? Why is their training so inadequate. How many people are languishing in poor health simply because most medics are so ignorant.

It must be costing the NHS millions as they dish out antidepressants, pain killers, HRT, as they mistakenly misdiagnose people, as well as the personal cost to thyroid patients. If thyroid disease was rare I could understand it, but its not.

sobs1962 profile image
sobs1962 in reply toSparklingsunshine

You're right about the cost to the NHS of misdiagnosis and the millions spent on dishing out antidepressants HRT and other unnecessary drugs, if they just trained their doctors better, it would save the NHS so much time and money.

greygoose profile image
greygoose in reply toSparklingsunshine

I'm copying and pasting a response I gave on that subject six years ago. Nothing has changed since:

Oh goodness! We've been over and over that so many times. They Don't want to. They have their own agenda for the most part. It's not in their interests to get patients well. And they Don't care very much, either. There are very few St Theresa's in the medical world. And, it would seem, most endos are in it for the power and the glory, not for the good of their patients.

Also, your average GP doesn't learn about it in med school - Big Pharma holds the purse strings, and it's not in their interests to have us get well, either - and what they Don't learn in med school doesn't exist. Most doctors may start out with good intentions, a desire to save the world, but there are so many psycological factors in their training that make them unamenable to patient pressure. They learn that all patients are ignorant liers, and they are super gods sitting up in the clouds, handing down pills at their devine discretion.

My last doctor is a case in point. I so obviously knew so much more than him on those two subjects, and spouted chapter and verse at him. And all he could say was 'yes, but I went to med school 40 years ago, and you didn't'!!! How can you argue with something as illogical as that? Never argue with a psychopath, anyway. It's a waste of time.

healthunlocked.com/thyroidu...

shaws profile image
shawsAdministrator in reply toSparklingsunshine

Once upon a time - before blood tests were introduced (I think by Big Pharma to increase their profits) doctors diagnosd us by clinical symptoms alone.

We were then given a trial of NDT (natural dessicated thyroid hormones) made from animals' thyroid glands and if person improved and relieving symptoms they were diagnosed as hypothyroid and continued taking NDT with small increases until symptoms resolved.

Natural Dessicated Thyroid Hormones were withdrawn in the UK a few months ago, despite it saving lives from 1892 onwards.

Lulu2607 profile image
Lulu2607 in reply toSparklingsunshine

I speak to the clinical pharmacist at my surgery about my dose, symptoms etc. He's extremely knowledgeable and helpful. A hospital consultant ( not endo) agreed, 'those guys can be very good!' They are the drug specialists after all.

shaws profile image
shawsAdministrator in reply toSparklingsunshine

They are poorly trained as I suppose 'those above GPs' "guess" what could happen rather than "knowing what happens".

shaws profile image
shawsAdministrator in reply toSparklingsunshine

Before blood tests were introduced (causing the NHS spending much more money) we were diagnosed upon our clinical symptoms alone and given a trial of NDT (natural dessicated thyroid hormones).

NDT was the very original life-saver for people who had a dysfunctional thyroid gland in 1892 and saved lives from then on. Natural Dessicated Thyroid Hormones, made from animals' thyroid glands' is more conducive to the human body. Unfortunately this has now been withdrawn from being prescribed.

sobs1962 profile image
sobs1962 in reply toSparklingsunshine

Well, my T4,will be high as its unlikely I'm converting properly as on 2 different medications that block conversion but must continue to take these,no choice I'm afraid .

SeasideSusie profile image
SeasideSusieRemembering

I've spoken to a,doctor from my GP practice this morning, who informed me that I'm no longer hypothyroid but in fact hyperthyroidism

What a twit. Shows how much he knows about hypothyroidism. If you are diagnosed hypothyroid it's physically impossible to become hyperthyroid, although you can be overmedicated which some doctors stupidly mistake for hyperthyroidism.

I'm now extremely worried, they be prescribe me an antithyroid drug such as carbimazole and that would be disastrous and would probably push me into myxodema, followed by death.

And if they do you don't have to take it. How can they force you to take it?

I was under the impression that ft3 should be tested if TSH is below range

That's what happens at the hospital lab which processes my GP tests and many others, but that's not to say that every lab will do so. Maybe because your FT4 is in range the lab realised that there's no way you are hyperthyroid.

Agree to nothing until further testing under the correct conditions has been done.

sobs1962 profile image
sobs1962 in reply toSeasideSusie

I have rebooked my blood tests for February 14th at 3pm and if it means I have to starve all day, then so be itas,getting accurate results is more important than eating on that day, I'm sure I'll be fine just for one day.

SeasideSusie profile image
SeasideSusieRemembering in reply tosobs1962

sobs1962

An afternoon appointment will give you a much lower TSH than a 9am appointment. Can you not change it considering that your GP is probably going by your TSH anyway?

TSH at 3pm is only just above the very lowest level of the day. Take a look at the first graph here to see the difference in TSH levels:

thyroidpatients.ca/2020/07/...

sobs1962 profile image
sobs1962 in reply toSeasideSusie

Have rebooked appointment and is now at 8.10am so I don't have to starve all day.

SeasideSusie profile image
SeasideSusieRemembering in reply tosobs1962

👍

shaws profile image
shawsAdministrator in reply tosobs1962

You can only drink water before your blood draw and it is also a fasting test, This will give you better results.

sobs1962 profile image
sobs1962 in reply toshaws

I don't drink water, because it tastes disgusting, only vimto well diluted with water, do you think that would be OK or not?

shaws profile image
shawsAdministrator in reply tosobs1962

We have to swallow it with water as we want the best effect and don't want to interfere with its uptake. You can put a flavouring into the water but I cannot state whether it will or will not interfere with levo.

shaws profile image
shawsAdministrator in reply toSeasideSusie

SeasideSusie - I like your succinct comment i.e.

"What a twit."

Ellie-Louise profile image
Ellie-Louise in reply toshaws

Just wondering if ‘twit’ refers to ‘birdbrain’ 🦅😁 years ago you always used to hear the expression about someone being a twit. Haven’t heard it mentioned since then until today. x

SeasideSusie profile image
SeasideSusieRemembering in reply toEllie-Louise

Actually, I had something else in mind but was mindful of not swearing on the forum 🤣

Gingernut44 profile image
Gingernut44 in reply toEllie-Louise

Actually, I think they’ve discovered that birds are quite intelligent and calling someone bird brain is a compliment 🤪

Ellie-Louise profile image
Ellie-Louise in reply toGingernut44

Ah! But would they see it that way just before they clout you one? 😂

Gingernut44 profile image
Gingernut44 in reply toEllie-Louise

Probably not, I’m not going to try it 😄

Ellie-Louise profile image
Ellie-Louise in reply toGingernut44

Probably safer. Lol

shaws profile image
shawsAdministrator in reply toSeasideSusie

It is ridiculous that we have to investigate by ourselves why we aren't improving.

Thankfully we have this forum due to Thyroiduk and Lyn Mynott who began Thyroiduk.org.uk as she had awful experiences too.

Gingernut44 profile image
Gingernut44 in reply toshaws

Agreed, I’d be in a worse mess if I hadn’t found this forum. Unfortunately, it was too late to stop the so called experts from destroying my thyroid (and my life) ☹️

tattybogle profile image
tattybogle

when GP 's say 'hyperthyroid ' to someone taking Levo with a slightly low TSH but fT4 in range ... they do not mean 'hyperthyroid' in the true sense .

They mean 'ovemedicated ' (ie. they still think your Levo dose is too high)

'Hyperthyroid' in the true sense means "your thyroid is producing too much T4/T3 by itself"

Don't worry that they are about to prescribe you carbimazole ,they are not meaning that sort of hyperthyroid .

They are just being lazy with terminology, and it confuses people .. i do wish they wouldn't do it , but they do .. all the time, to everyone .

Taking your Levo on the morning of the test will not have made any difference to your TSH that day , and on your latest results , it is only the TSH that is making them say 'overmedicated/hyperthyroid'

Taking the test in the afternoon will have given a slightly lower TSH than if the test had been done at 8/9/10 am. So you can try using that argument if you don't want to reduce your Levo . But saying "i took my levo that morning" won't be of any use , because it's not the fT4 they are bothered about on these results , it's the below range TSH.

Do not worry about carbimazole .. it's not going to happen.

They may ask you to reduce levo a bit more.. which might be a problem , or it might not.

Since you did feel some improvements on the lower dose for the last couple of months then if they do ask you to reduce further you could either:

a) agree and see how it goes .

b) ask to remain on current dose for longer to see if improvements continue, and wait a few more months to see if TSH will rise a bit more in time . TSH is very slow to move sometimes.

As soon as TSH is over 0.04 .. there is a study you can use to show them that there are no increased risks to heart and bone from TSH 0.04 to 0.4

See my reply to this post (3rd reply down ) healthunlocked.com/thyroidu... feeling-fine-but-tsh-is-low

It has a link to that study , and links to other useful posts on the subject of low TSH /risk which might be useful for you.

tattybogle profile image
tattybogle in reply totattybogle

Apologies sobs1962 , i have just realised i was confusing you with someone else when i wrote that reply .. so if the bit about . "feeling improvments already on lower dose over a couple of months "don't make sense , that is why . Sorry x

The lab protocol usually probably goes like this >> If TSH under range >> test fT4 >> if fT4 over range >> test fT3. (it's called 'reflex' protocol)

So because your fT4 was in range , they knew there was no need to run another test on fT3 to see if fT3 was over range, (and NHS are only interested in overrange fT3 ... if it's in range they don't want to know 'where in range' it is )

sobs1962 profile image
sobs1962 in reply totattybogle

Thanks for that, yes he did use,the term "over-replaced " and gave me the usual BS about atrial fibrillation and osteoporosis and read me part of letter sent by endocrinologist which states exactly the same. I don't think they'll be happy until my constipation is bordering on constant impaction and I'm completely unable to function and I'm as,sure as,I can be that,that is what will happen if they reduce my dose, after all, I've suffered from chronic constipation for 52 years and no amount of fibre has helped the problem, just glad I'm still taking my magnesium supplement as it seems to be keeping my bowels reasonably regular, and as I've had to go through the agony of anal fissures and GTN ointment not helping and it taking years to resolve, I definitely don't want to go through that again and anyone who says constipation has never killed anyone, clearly didn't realise that is exactly what killed Elvis Presley.

greygoose profile image
greygoose in reply tosobs1962

Did it really? I didn't know that. I thought he had a heart attack. Perhaps Elvis was hyp. He did put on a lot of weight quite suddenly.

in reply tosobs1962

Didn´t Elvis die of a heart attack brought on by stress and all sorts of drugs that his doctors put him on to keep him going? At least that is the official version.

humanbean profile image
humanbean in reply totattybogle

They are just being lazy with terminology, and it confuses people .. i do wish they wouldn't do it , but they do .. all the time, to everyone .

I suspect that doctors tell hypothyroid patients they are hyperthyroid when their TSH is below range (or even low in range?) as a deliberate policy to try and reduce opposition to a reduction in dose.

shaws profile image
shawsAdministrator

You were correct in requesting another blood test.

Few doctors know anything very much except to look at the TSH. I think they are completely unaware that they fail to diagnose many patients. I was one of those whose TSH was 100 and GP phoned to tell me that I had nothing wrong with me at all. (I can assure you I didn't feel well).

I cried when I was finally diagnosed.

I have recovered my health and it was due to finding Thyroiduk and Dr. John Lowe (deceased) who was a scientist/researcher/doctor who was also an Adviser to Thyroiduk long before this Healthunlocked forum.

GPs fail to understand that TSH is from the pituitary gland - not the thyroid gland. TSH rises when trying to increase more thyroid hormones.

helvella incorporated the following link to Dr Lowe's website.

healthunlocked.com/thyroidu...

sobs1962 profile image
sobs1962 in reply toshaws

I can't believe that your TSH was so so high and they did nothing, it's nothing short of a miracle that you're still alive never mind feeling better. I do wonder though, if I'm being overly paranoid about it all, as I do have severe mental health problems and I definitely don't want to go back to the "bad old days" of my childhood and the constant fear of going to the toilet and like I said Elvis Presley had a heart attack brought about by straining on the toilet due to severe constipation and I don't EVER want to find myself in that position.

shaws profile image
shawsAdministrator in reply tosobs1962

When we're unwell and don't know the reason, it's no wonder people worry about what 'they could or may develop'.

Thankfully Elvis' condition must be rare.

Gingernut44 profile image
Gingernut44 in reply toshaws

It may not be so rare as my sister, who was an NHS Staff Nurse, decided to have a change and got a job as Factory Nurse for a very large, well known manufacturer and told me that several men had been found in the toilet, dead from heart attack whilst straining to “go”

shaws profile image
shawsAdministrator in reply tosobs1962

If you click on my name you can read more of my journey. I cannot understand why doctor/specialists know nothing about clinical symptoms with which we used to be diagnosed before blood tests were introduced.

sobs1962 profile image
sobs1962 in reply toshaws

Their reliance on blood tests is ridiculous, what happened to diagnosing patients by signs and symptoms, isn't that what they're actually trained to do? Clearly not!!!

jimh111 profile image
jimh111

Hypothyroid patients can become hyperthyroid either from erratic thyroid secretion, antibodies stimulating secretion or by very bad luck and getting Graves' as well. You can also get hyperthyroid symptoms from excess hormone treatment, strictly called thyrotoxicity but I prefer to call it hyperthyroidism as thyroid hormones are not toxic.

It's quite possible in your case that biotin disrupted the blood test so wait and see what the next test shows.

greygoose profile image
greygoose in reply tojimh111

And you are part of the problem! How can we all know what we're talking about if some people use a randomised personal vocabulary? Doesn't matter what you 'prefer', it's what is correct that counts. We have enough problems on this forum with people using random vocabulary so that no-one understands what they're talking about, without someone who should know better doing the same thing.

sobs1962 profile image
sobs1962 in reply togreygoose

Yes, agreed but I think doctors love nothing better than blinding us with scientific terminology, it makes them feel superior.

greygoose profile image
greygoose in reply tosobs1962

Well, it might if they actually knew that scientific terminology, but they get a lot of it wrong, too.

sobs1962 profile image
sobs1962 in reply togreygoose

Oh dear that really doesn't give me much confidence.

shaws profile image
shawsAdministrator in reply tosobs1962

One of my GPs told me "your TSH is too low, your T3 too high and T4 too low".

I know doctor and it is because I take T3 only I don't take T4.

He said but T3 converts to T4. "No doctor that's incorrect as T4 should convert to T3".

sobs1962 profile image
sobs1962 in reply toshaws

Honestly if they can't that right, what chance have we got?

jimh111 profile image
jimh111 in reply togreygoose

Hypothyroidism refers to insufficient secretion from the thyroid. We however use the term hypothyroid to cover all disorders that cause hypothyroid signs and symptoms. For example impaired conversion of T4 to T3, patients will (correctly) be told they are hypothyroid because they are not converting well enough. Other examples are various forms of resistance to thyroid hormone, the effects of endocrine disrupting chemicals and nutritional deficiencies that disrupt thyroid hormone action. A key point is that we may know a patient is hypothyroid based on their signs and symptoms but have not yet discovered the underlying cause.

In this case we don't yet know whether the blood test results are accurate or there is hyperthyroidism, perhaps caused by erratic secretion from the thyroid. If a patient on thyroid hormone has hyperthyroid signs and symptoms we may not know whether this is due to taking too much hormone or excess thyroid secretion caused by e.g. antibodies.

A person may clearly be hypothyroid or hyperthyroid, in some cases it will be obvious when we see abnormal hormone levels but what about numbers that are within their reference intervals? Do we tell them they are normal and cannot be hypo- or hyper-thyroid because the blood tests say so?

I don't restrict the terms hypothyroid or hyperthyroid to abnormal blood test results because I believe we should diagnose on the basis of signs and symptoms and the response to thearapy. Throtoxicosis strictly refers to excess thyroid hormone action but if we take a pedantic approach to hyperthyroidism we must do the same with hypothyroidism and exclude all cases where thyroidal secretion is within normal limits.

I wouldn't criticise a doctor for using the term hyperthyroid to describe excess hormone action. Hypo is under active and hyper over active. It's easier for a new patient to understand and the term throtoxicosis sounds quite scary. I really dont' want to stop using the term hypothyroid when patients are clearly hypo but have within limits blood tests.

greygoose profile image
greygoose in reply tojimh111

So, what you're saying is, anything goes! We can call things what we want at will. OK, so I'm going to call this rhinocerous a ladle - watch out! That ladle is going to charge! Oh, sorry you got crushed by that ladle, but it's really not my fault if you didn't understand that ladle really meant rhinocerous...

jimh111 profile image
jimh111 in reply togreygoose

I use precise terms when discussing research but an informal style is better for day to day use, we understand hypo to mean 'under' and hyper 'over'. Toxicosis refers to 'a pathological condition caused by the action of a poison', hence I dislike 'thyrotoxicosis' a word that carries a lot of prejudice as well as being inaccurate (hormones are not toxins).

Hyperthyroidism means excess thyroid hormone synthesis and secretion, a definition that raises problems. In Graves' disease most of the excess hormone is produced by deiodinase, not synthesis or secretion. So, strictly speaking Graves' does not cause hyperthyroidism but we are happy to say it does.

We all refer to 1,25-dihydroxycholecalciferol as 'vitamin D' although can be synthesised by the body (and so is not a vitamin). It is also a hormone.

We refer to 'TSH' yet we know it has dual action: stimulating thyroidal synthesis / secretion and stimulating deiodinase. As with vitamin D we accept the inaccurate historic definition.

Terminology changes over time, informal and precise use each have their uses.

greygoose profile image
greygoose in reply tojimh111

You're splitting hairs. And confusing people - dare I say 'blinding with science'? - by talking about things that the average patient will never encounter because no doctor has ever heard of such things!

The point is, you're also confusing people by talking about 'going hyper' when they are over-medicated. No-one is asking you to say 'thyroidtoxicosis', that's misleading, too. Why can't you just say 'over-medicated'? It's not that difficult. And then we'll all know what you're talking about.

tattybogle profile image
tattybogle in reply togreygoose

I agree GG.

The main users of the forum , (and the most important ones from the terminology point of view), are people who barely understand what "TSH" or "fT4" mean yet.

It is those readers we must be careful about when choosing our terminology.

The rest of us can very easily figure out what is meant by hyper / hyperthyroid / thyrotoxicosis, from context.

The main problem i see frequently on the forum, is when GP's use the term 'hyper/hyperthyroid' when discussing dose with patients on thyroid hormone replacement.. those patients often think the GP is saying they've "now got an overactive thyroid/graves disease" and go off looking up information on Graves disease, and scare themselves silly, thinking they will have to have carbimazole or thyroidectomy /RAI. and get bulging eyes etc .

If everybody including GP's, would stick to using 'hyper/hyperthyroid' for the state where "the body itself is producing to much T4/ 3 "......

and use 'over-medicated' when they mean "the patient is taking too much thyroid hormone" .. then their meaning becomes much more obvious , even to people who don't know much about it yet.

'Overmedicated ' is self explanatory, ie. "the only thing that is wrong with you is that you are taking a bit too much"

'Thyrotoxicosis' .. (in my own personal dictionary !) means "too much thyroid hormone from whatever source" ( thyroidal production, or deiodinase conversion , or exogenous tablets ).... ie "enough to make you ill."

greygoose profile image
greygoose in reply totattybogle

Exactly!

jimh111 profile image
jimh111 in reply togreygoose

My original post explained that there were a number of ways they could go hyperthyroid (strict definition) with hypothyroidism as well as being over-medicated which is usually referred to as thyrotoxicity. I was explaining why the doctor might use the term 'hyperthyroidism' and could be right, we don't know yet. I dislike the terms 'thyrotoxic' and 'subclinical hypothyroidism' and try not to use them, preferring to say whether the person appears hypo or hyper. We will just disagree on this one.

I admit I am pushing it a bit in trying to change the terminology, stop using these terms in the same way we no longer define patients as cretins or spastics. I think that by getting rid of prejudicial terms we can advance our cause. In the end 'hypo' and 'hyper' are much easier concepts.

greygoose profile image
greygoose in reply tojimh111

Yes, I know, you've explained all that several times. And, I understand the distinctions. But there are probably hundreds of people on here that don't. I don't like terms like 'thyrotoxicity' and 'sub-clinical hypothyroidism' - and worse still 'sub-clinical hyperthyroidism'! - and I don't use them. But, a person is never ever going to know if they've 'gone hyper' due to over-medication or a sudden spurt of activity by the thyroid, because doctors have no idea either. So, why confuse them by using the term 'hyper'. And, whilst it may be simpler, over-medicated is likely to be far more accurate. And, if I'm arguing with you, it's not to try and change your mind, because I know that's a lost cause, but to indicate to others - especially newbies - to take the term 'hyper', when they're actually hypo, with a huge pinch of salt because it doesn't mean what they think it means.

jimh111 profile image
jimh111 in reply togreygoose

The high fluctuating fT4 and very low TSH on 100 mcg L-T4 suggests excess secretion from the thyroid independent of TSH, thyroiditis or whatever. We will have to wait for further blood test results including fT3 but on this basis the doctor's preliminary diagnosis of hyperthyroidism is reasonable unless there was assay interference.

tattybogle profile image
tattybogle in reply tojimh111

yes Jim but , In the context of this post by Sobs .... (who was anxious and confused already, and very worried about being prescribed carbimazole inappropriately and presumably in light of the fact that she's just had a stoke, will have little concentration/ energy to unpick all of this technical argy bargy about hypo /hyper terminology) .... .. is it really helpful to write the words "the doctors preliminary diagnosis of hyperthyroidism is reasonable .... "

We've just spent ages re-assuring her that she's not about to be put on carbimazole and her major concern at the moment is 'death by constipation' if she is .

jimh111 profile image
jimh111 in reply totattybogle

It’s a reasonable initial diagnosis by the doctor based on the fT4 and TSH and tachycardia (if I remember correctly an earlier post). If this is correct the first approach would be to reduce the levothyroxine not add carbimazole, we should have mentioned that. The constipation seems to show little response to levothyroxine which suggests there might be other causes such as other drugs or supplements, depression or calcium problems (she has PA). We have to keep all options opener constipation.

tattybogle profile image
tattybogle in reply tojimh111

I do understand what you're saying , but my point is , would it not be more helpful to just write overmedicated ,rather then hyperthyroid ? This would avoid reinforcing the op's unfounded concerns re. hyperthyroid being associated with carbimazole treatment ?

if not why not ? i'm curious about your reason for seemingly avoiding the term 'overmedication' in this scenario, where i don't think either the GP or any of us is seriously suggesting that there would ever be any need for carbimazole to reduce hormone levels..

If there was any reduction of thyroid hormones required , it would obviously be achieved simply by means of a dose reduction.

jimh111 profile image
jimh111 in reply totattybogle

I’m using the term hyperthyroid here in support of the doctor because that seems the most likely reason for the very low TSH and a very high fT4 previously. We need to see fT3 figures but the odds are in favour of the thyroid being a bit erratic and secreting hormone in spite of a low TSH. Of course, taking 100 mcg levothyroxine adds to the fT4 figure but doesn’t fully explain the fT4, TSH. There seems to be some autonomous thyroidal secretion, a degree of hyperthyroidism. Another blood test with fT3 will be helpful.

tattybogle profile image
tattybogle in reply tojimh111

So if i understand you correctly , you might call it 'overmedication' if you thought all of the T4 was coming from tablets , but because you suspect it is also coming from the thyroid erratically and sometimes going overrange , you are using the term 'hyperthyroid'

'erratic autonomous thyroidal secretion' , regardless of low TSH ? are you thinking auto immune destruction chucking a bunch of pre formed T4 out all at once.... or some other erratic mechanism ?

it sounds like you see that combination of TSH/fT4 as unusual/unexpected for that dose . I'm not seeing it in the same context as you , i see this as pretty common , perhaps because i also have significant fluctuations in fT4 , and have that combination of fT4/TSH myself , so I don't see anything 'unexpected' about a top end /over range fT4 and below range TSH on eg. 100mcg Levo.

I've twice had my fT3 measured when fT4 was top end / over range and TSH was very low , both times, my fT3 was approx mid range .

150mcg Levo TSH <0.05 / fT4 18.8 [8-18] 108% / fT3 5.2 [3.8-6] 63%

125mcg Levo TSH 0.046 / fT4 14.7 [7.9-14] 119% /fT3 5.1 [3.1-6.8] 54%

So high end fT3 did not seem to be an issue, for me at those times . and if i remember correctly Sobs' last fT3 was only 4ish , even with that very over range fT4.

Sob's previous full test was :

TSH 0.02mu/L(0.27 - 4.2)

T4 31.5pmol/L (12 - 22)

T3 4.2 (3.1 - 6.8)

it was done 4/5 hrs after taking levo, so fT4 probably not really that high , but still higher than you'd expect , i agree .

But if that much fT4 had fT3 at only 25%.. then i'd be surprised if current fT3 will be over mid range with latest results of:

TSH - 0.03 (0.35 - 5.50)

T4 - 19.4(10.0 - 20.0)

(Sorry for waffling on all over your post sobs1962 , i am just trying to understand Jim's thinking )

jimh111 profile image
jimh111 in reply totattybogle

Obviously some of the T4 is coming from tablets and some from the thyroid which makes the hyperthyroidism / over treatment issue equivocal. In any event the high fT4 with tachycardia suggests hyper signs. The wildly fluctuating fT4 suggests the thyroid is involved. Whether this is due to thyroiditis, hot nodules, TSH receptor antibodies we don't know and it wouldn't make much difference to treatment. Taking levothyroxine before a blood test makes very little difference. So, it looks like the thyroid is playing up. We need to see fT3.

sobs1962 profile image
sobs1962 in reply totattybogle

Don't worry, I'd rather be straight in my own mind about what's potentially going on than expecting the doctor to explain it, which I doubt he could as I doubt he even understands it himself.

greygoose profile image
greygoose in reply tojimh111

You're giving the doctor too much credit! Do you think he really thought all of that? Do you think he even knows anything about all that? He saw the low TSH and his lizard brain screamed 'hyper!' And that's as far as his thought processes went.

Yes, of course we need to see more numbers, but they haven't been tested. And, in the meantime we need to reassure a pannicking patient. Even if it were her thyroid, etc. it would only be transitory. Hashi's more likely. And what we should be campaigning for is more thorough initial testing and less doctors playing with crystal balls!

sobs1962 profile image
sobs1962 in reply togreygoose

Well said, I would love to know exactly what they're taught about endocrine disorders in medical school, it seems to me that they've latched on to one highly thought of doctors opinion about it all and continued to preach that philosophy ever since, even though things may have changed dramatically during the last 50 years. Let's be honest, if you tell a person something often enough they'll eventually believe it completely, even if it's completely wrong.

greygoose profile image
greygoose in reply tosobs1962

Well, very little, it would seem. Reports vary, but basically it would appear to come down to one afternoon in seven years when they 'learn' about the whole endocrin system - which is vast. So, not much about the thyroid at all. More important is the impression they are given during their years at med school, that they are gods, and patients - especially women - are all idiots who can't even be trusted to know their own bodies. It's a whole different world, with a whole different mind-set, to the one the rest of us know.

sobs1962 profile image
sobs1962 in reply togreygoose

God help us all!!!

greygoose profile image
greygoose in reply tosobs1962

Indeed. And what they do learn is of little help to us:

* don't diagnose until TSH goes over 10

* treat with levo only

* just get the TSH back to somewhere in range - anywhere will do

* if patients still complain about symptoms they must be nuts so send them to a psychiatrist

* a suppressed TSH causes osteoporosis and heart attacks

* T3 is unstable so not worth testing

* T3 supplements are dangerous and should never be prescribed

And that's why patients have so many problems!

sobs1962 profile image
sobs1962 in reply togreygoose

Well, that definitely explains it then. Has it never occurred to any of them to get more in depth knowledge, or are they so arrogant that they really think, they know it all, probably the latter, especially as hypothyroidism is such a common condition.

greygoose profile image
greygoose in reply tosobs1962

They've been brain-washed in med school to think that they do know it all, as far as thyroid is concerned. They are told that hypothyroidism is - and I quote - 'easily diagnosed, easily treated'. And that it's really no big deal. We're all just whinging softies, hypochondriacs, attention-seekers, making a fuss about nothing. They have no idea how serious and debilitating the disease is.

sobs1962 profile image
sobs1962 in reply togreygoose

It certainly appears that is their attitude, it makes me wonder why anyone wants to be a doctor with that attitude, but I think it's more about social status and massive egos especially male doctors.

tattybogle profile image
tattybogle in reply togreygoose

:)

Congratulations , you are now a fully qualified Endocrinologist.

Oh , wait a minute ... can you be rude and dismissive ?

That's necessary too .

greygoose profile image
greygoose in reply totattybogle

Oh yes! No problem! lol

sobs1962 profile image
sobs1962 in reply togreygoose

We can all be rude and dismissive, when we want or need to, but there's no excuse for it in the medical profession, I mean didn't they become a doctor to help people?!!!

greygoose profile image
greygoose in reply tosobs1962

Initially, probably, yes. But, that soon got knocked out of them in med school.

sobs1962 profile image
sobs1962 in reply togreygoose

How terribly sad, the people training doctors are clearly not the slightest bit humanitarian and their cynical view of the world clearly rubs off on their young impressionable students.

greygoose profile image
greygoose in reply tosobs1962

They are senior doctors, so what else can we expect? The attitude has been passed down from generation to generation, it's not going to stop now.

sobs1962 profile image
sobs1962 in reply togreygoose

Clearly society as a whole has gone to hell in a hand basket,I'm slowly but surely losing faith in all humanity.

greygoose profile image
greygoose in reply tosobs1962

I lost it a long time ago. But, then, just when I'm at my lowest, something will happen to restore it a little bit. There are nice, kind people out there, just not doctors, I'm afraid. I have known some socially, and I didn't like them at all! No, there again, I'm generalising and exaggerating. It's just that you tend to forget the nice ones because they're over-shadowed by the nasty ones - and very often by their own egos! I once had a very charming doctor - appeared to be more clued up in some ways than the majority. He cured my six year-old son of bed-wetting, for example. But, not even he picked up on my hypo, which was obvious to anyone in the know at that time. And, then, my gynea said I needed a hysterectomy, and that's when he showed his true colours!!!

sobs1962 profile image
sobs1962 in reply togreygoose

I long for my old GP who was very thorough and always explained everything in a way that you could understand and after presenting for years with severe unshiftable depression, it was he who had my thyroid checked after 12 years, mind you but I dread to think how much longer I would have gone on without his great gut instinct. Sadly he retired about 15 years ago and I've never found another doctor who comes even close.

greygoose profile image
greygoose in reply tosobs1962

Well, he wasn't all that thorough if it took him 12 years to find the cause of your depression; Thyroid should be the first port of call for just about everything, even if it's only to eliminate it.

sobs1962 profile image
sobs1962 in reply togreygoose

Agreed, but he was such a nice man too and that makes all the difference.

greygoose profile image
greygoose in reply tosobs1962

We-ell...

SlowDragon profile image
SlowDragonAdministrator

Obviously you have to have FULL thyroid testing Ideally testing folate, ferritin, B12 and vitamin D

Insist TSH, Ft4 and Ft3 tested together, book test early morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Stop taking any supplements that contain biotin a week before blood test

Instead perhaps consider adding separate folate and separate B12 during that week

Your taking propranolol, and you know this slows conversion and uptake of levothyroxine.

jimh111 profile image
jimh111 in reply toSlowDragon

Propranolol is relevant as it will reduce T4 to T3 conversion in peripheral tissues but not in the pituitary, so TSH will not accurately reflect thyroid status. If possible switch to a beta blocker that doesn’t affect the thyroid system.

SlowDragon profile image
SlowDragonAdministrator in reply tojimh111

sobs1962 has tried different beta blockers…..but has had to go back to propranolol

Personally I found propranolol lowered TSH,….because Ft4 was higher than might have been…if hadn’t been on propranolol.

I was stuck on propranolol 20 years ….took 6-8 months to ween off after going gluten free

jimh111 profile image
jimh111 in reply toSlowDragon

Interesting effect on T4 which of course has a longer half-life than T3.

sobs1962 profile image
sobs1962 in reply toSlowDragon

I've tried insisting on full thyroid tests being done before and been told there is no "justification " for testing ft3 as it doesn't tell them anything and is a "pointless " test. I just wish they would listen instead of treating me like a completely paranoid hypochondriac, this is the problem with them knowing I have BPD, they think it's all" in my head "

SlowDragon profile image
SlowDragonAdministrator in reply tosobs1962

They won’t include Ft3…rarely even include Ft4

Frequently necessary to test privately

Monitor My Health Is cheapest for just TSH, Ft4 and Ft3 at £26.10 - use code for 10% off

thyroiduk.org/help-and-supp...

sobs1962 profile image
sobs1962 in reply toSlowDragon

Have done this before and probably will in the future, but worry that taking an anti platelet medication may make it much more difficult to get the bleeding to stop, so might opt for having a blood draw,although I know it's considerably more expensive, but if it's needed, then so be it. On clopidigrel now, since my stroke, so bleeding is a worry for me,not that I have any intention of deliberately cutting myself to test it, but pricking your finger is still classified as bleeding

humanbean profile image
humanbean

I don't think they'll be happy until my constipation is bordering on constant impaction and I'm completely unable to function and I'm as,sure as,I can be that,that is what will happen if they reduce my dose, after all, I've suffered from chronic constipation for 52 years and no amount of fibre has helped the problem

Have you ever taken potassium supplements or tried increasing your potassium intake via food?

Referring to fibre, too much is as bad as too little.

Do you take Vitamin B12, either alone or in a B Complex? If you supplement B12 in any form what kind of B12 is it?

Low levels of potassium can cause constipation. But you need to be aware - if you were to supplement potassium then it could reduce your absorption of B12 and ultimately make you deficient in B12 which would bring its own problems in terms of health.

This video discusses it very briefly, and constipation is mentioned as a symptom of low potassium :

youtube.com/watch?v=CPnQSnk...

Here are some relevant symptom lists :

Low potassium (hypokalemia) : See table 2 in this link : ncbi.nlm.nih.gov/labs/pmc/a...

High potassium (hyperkalemia) : en.wikipedia.org/wiki/Hyper...

Low Vitamin B12 : en.wikipedia.org/wiki/Vitam...

You might find these videos of interest - both on the subject of fibre and gut health :

youtube.com/watch?v=DEx9foe...

youtube.com/watch?v=4KrmpK_...

greygoose profile image
greygoose in reply tohumanbean

That's interesting about potassium and B12. But is it just if you take them at the same time? Or within the same day? Or just all round?

sobs1962 profile image
sobs1962 in reply togreygoose

I was wondering that too ,suppose it depends how long your body takes to absorb either.

greygoose profile image
greygoose in reply tosobs1962

Well, I've been googling around, but haven't found much of any help. Seems that if you take potassium supplements long-term, that can affect your absorption of B12 for food. And, vice versa, if you take B12 supplements they can affect your absorption of potassium from food. However, it seems that there's no reason why you shouldn't take potassium and B12 supplements together. Nowhere does it say if they mutually block absorption then. So, really, I'm none the wiser! lol

Hylda2 profile image
Hylda2

My TSH is always 0.01 my T4 22 with a top range of 20 but apart from ringing and suggesting I might lower my T4 which I politely decline, nobody ever thinks I’m hyper.

Yes I’m constipated but take Laxido sachets so I cope.

shaws profile image
shawsAdministrator

Oh dear! another doctor who only looks at a TSH result. They fail to be aware that this is from the pituitary gland not the thyroid gland.

The TSH tries to flag the thyroid gland to produce more hormones, so that the body feels well and symptom-free once more.

Only take advice from members on this forum as we've gone through traumas - at times - and not knowing where to turn for good advice and slowly restore health. My TSH was 100 and I was phoned to tell me that there was nothing wrong.

The earliest we realise that few GPs know much except to look at the TSH (and because yours is low he has jumped to the conclusion that you now don't have hypothyroidism).

Once diagnosed as being hypothyroid - we cannot recover after a few weeks - the best we can do with replacement hormones is to bring TSH to 1 or lower and both Free T4 and Free T3 towards the upper ranges.

shaws profile image
shawsAdministrator

To tell you you are no longer hypothyroid! Avoid this doctor

sobs1962 profile image
sobs1962 in reply toshaws

Yes, I agree they don't understand about autoimmune thyroiditis and Hashimotos flares and how that affects T4, T3 and T4 to T3 conversion, seems obvious to me that if you're not converting that there will be an excess of T4 in the blood as it's just "pooling "and the body isn't doing anything with it.

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