Conclusions please...
Endo letter to GP how does this read to you?... - Thyroid UK
Endo letter to GP how does this read to you?...
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TiggerMe
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PurpleNailsAdministrator
Terrible.
Trying to place blame for symptoms elsewhere. Not thyroid, it’s chronic fatigue ie not their responsibility.
Doctors don’t want to get into trouble for low TSH. Hence the I won’t treat if you don’t do as I say. Staying on dose may result in detrimental health.
“cortisol was a fairly respectable 271 mol/L,”
What does that exactly mean? They don’t share range.
All very wishy washy isn't it.... I thought CFS is linked to low cellular T3 or maybe not by the NHS 🤷♀️
No range given for cortisol so maybe "fairly respectable" is just above 'pants'? 😆Though my concern does earn me a SS test?
I like the 6-8 month reprieve from the next round of nonsense 🤗
The only things he didn't blame were depression, health anxiety or the menopause. Sounds like the usual patronising, paternalistic drivel parrotted by doctors when dealing with female patients. I suppose you can be grateful he didn't suggest antidepressants or counselling 🤣
Opening question was how are you feeling?... answer 'apathetic' think this covers the health anxiety bit 🤣
HRT'd to the hilt!
So far I've only seen a🚺
frontiersin.org/articles/10...
Higher Prevalence of “Low T3 Syndrome” in Patients With Chronic Fatigue Syndrome: A Case–Control Study
How do we get NHS Endo's to read these? Surely they are obliged to update their knowledge throughout their career?
Yes but if their ‘continuing education’ is organised and carried out by like minded doctors are they likely to look at or even, perish the thought, discuss and maybe even take on board new and possibly controversial ideas or is it just more of the same old same old?
you would think they might question these methods when they keep having us pesky patients that buck the trend that they need to deal with… fob off!
yes there is research out there about Low T3 levels found in CFS patients. I found it on a google search
I thought they’d also realised the connection with long Covid, CFS and low cellular T3
I know I’m extremely cynical but it sounds like a smarmy, sneaky way of saying to your doctor he doesn’t believe / agree with what you’re trying to tell him and he’s *big sigh* discussed how the thyroid axis works, discussed and reiterated his previous advice and now he’s going to humour you with the short synacthen test.
Love the ‘fairly respectable’ comment (not!) That’s one we haven’t heard before.
After our first meeting I did agree to a reduction just to prove the need, this put me back to bed for most of the day so I increased, hence the narky remark.
When pointing out the effect 10 weeks on a lower dose had and zero shift in TSH the comment was "well you obviously need to further reduce"! 🙄
I managed to get the SS test but I was said to be fine and very disappointed as I felt as though I was ' on the floor ' -
I then read in Dr Peatfield's book that this test is a waste of time as it is not sensitive enough and basically designed solely for those with Addisons Disease.
Maybe try a course of adrenal glandular supplements and see how you feel after 3 months ?
Having had RAI thyroid ablation I read this is also taken up to a lesser extent by other glands and organs in the body - including the adrenals - and have to say I do feel better with this support glandular - 7 years and counting and with the last 5 years self medicating NDT.
Yes, I'm not expecting much from the SS test but on the back of agreeing to do it I have sent an email requesting they also test aldosterone and renin due to my pituitary gland seemingly not being very responsive 😉🤞I think this would be more useful. Might at least get her to read up more on these things or just sign me up for it if not, it seems sometimes they just like suggestions to placate us😅
I've been using glandular supplements since the beginning of the year and they are a great help.... but they give me wind! 😏I'm about to swap over to a little hydrocortisone
Oh - that's interesting - but at least that tells you something is metabolising !!
Yes, the beefy bit 🤣
Seemingly the hydrocortisone has no effect on the SS test if withheld for 12 hours and I've no idea when it might happen so don't want to stop my experimenting
SeasideSusieRemembering
Eeyore100
I had an endo not unlike this 20 years ago. He wanted my TSH in range (it had always been suppressed) and of course I had muddied the water by seeing Dr P and being on NDT for a while - this information almost caused him to spontaneously combust!
Of course, he insisted I come off NDT if he was to treat me, to which I agreed (it hadn't helped me anyway).
After 2 months on Levo my results showed TSH still suppressed, FT4 93% through range with FT3 56% through range. Of course he was very unhappy that my TSH was still suppressed and insisted I reduce dose of Levo. 4 months later my TSH was 0.4 (woopie - in range), my FT4 was 30% through range with FT3 at 0.00% through range (yes - 2.8 with range of 2.8-7.1). He was ecstatic, I was very ill.
I went to see my GP with many hypo symptoms, told her I would no longer see him and she agreed with me that I needed my Levo increasing and didn't blame me for binning him off!
It still didn't help because back then I didn't know my nutrients were poor (they were never tested) nor did I know I was a poor converter - all that came later after I joined this forum. It meant that I had to go my own way, accept their Levo but deal with optimising nutrients and self sourcing T3 myself. I'm more than happy not to be shackled to an ignorant doctor any more.
Are you going to stick with it or break free?
Hmmm.... and Endo's outrank GP's eh 🙄
Endo is quite young so you would hope still questioning and learning?
I'm currently on the dose I want to be on so this has given me 8 months, I could probably wangle longer to continue with my investigations into low cortisol which got a whole lot worse after the lowered dose fiasco.... like you experienced no concern that I lost function as long as my TSH was in range 😡
With all the fantastic knowledge from this forum I'm impowered enough to cut loose if it becomes too awful dealing with them.... I was more following this course to try and help educate at least one NHS Endo and make things a little better for those who follow...
At least whilst this lasts I can add whichever blood tests I need to the forms 😉
I already spend something like £100 a month on supplements so I'm loathed to pick up the tab for the hormones too and then not be counted as a sufferer, when this is a very real issue that the NHS needs to wake up and get to grips with.
Oh Bravo! After my hospital endo asking me 3 times to come off all thyroid meds and me refusing he passed me over to someone else.
NEW ENDO: I see you have refused to come off your thyroid meds
ME: That's absolutely true, there's no way I'm doing that
NEW ENDO: Why are you on NDT and not Levothyroxine like most people
ME: Levo did nothing for me whatsoever
NEW ENDO: Have you actually ever been on it
ME: Yes years ago
NEW ENDO: Perhaps you should try it again
ME: There's no way I'm doing that
NEW ENDO: Perhaps we should make an appt. for you to come in
ME: If you think that will help in anyway then by all means
I was pleased to have a couple of scans showing a multinodular goitre but other than that I've had zilch from the endo and I certainly wouldn't want to be under his control when he thinks that coming off of thyroid meds is the only answer☹️
My conclusion is that eventually this will be recognised as a health scandal. The government (as opposed to individual doctors) will have to pick up the tab. That is if there is any money in the coffers whenever the issue finally comes to be recognised. Doctors of course, even the ones who write the guidelines should be safe from any legal issues. After all they are following the guidelines.
People who threaten their own health by risky behaviour are not denied treatment on the NHS. I think there might be something around transplant surgery but we are not talking about anything so extreme. However it’s OK to threaten and deny hypothyroid sufferers treatment, just because they feel better on a certain level of medication?
I don't see why they can't reclassify it so that we could buy it over the counter for peanuts as in other countries if it effects so few and they don't want to monitor us correctly anyway... much like paracetamol which you can just as easily kill yourself with 🤷♀️
Exactly 👍
Yes lots of contradictory views held by medics/the system and no-one is allowed to question them.
So perhaps we should be allowed to make our own decisions on our healthcare if they just made them over the counter items?
Have we tried that angle anywhere that might be useful? It’s just that at best, trying to ‘fit’ their backward views when it’s our everyday experience of life, is very much adding to our ‘stress’. Anyway that’s how I feel. Every time I read a post like yours (there was at least one other on the same day) I get a physical reaction to it. The injustice, the lack of empathy, the frozen outlook, the lack of partnership, the lack of help. Frankly it’s overwhelming sometimes.
I was just looking at a projected piece of research using combination T4/T3 but ‘they’ want to give amounts of T3 which are essentially a ‘flat’ dose. Flat doses of Levothyroxine we know do not work in 15 to 20% of cases people and T3 even more so. This is not going to do well. We know treatment needs ‘tailoring’. Such little changes to levels can make a massive difference. Again they just don’t get it! Hormones are not like other medications. Dr. Broda Barnes noted other doctors cavalier attitudes towards prescribing hormones back in the day. Nothing has changed on that score either. No lessons learned.
I have had some truly horrible experiences myself with clumsy prescribing from both NHS and private. Our only recourse is A&E, where they are not equipped to handle the nature of thyroid prescribing but thankfully can still handle anything truly untoward. However this is not a good experience.
The only place which deals with the idiosyncrasies of prescribing is right here on the forum. This is a service entirely absent from the NHS and frankly private also.
The added guilt associated with only attempting to feel better is entirely unnecessary.
Totally agree with you there. My brother, while he lived in Greece, was quite able to get me my T3 over the counter there and send it over.
Doctors are going to have to accept that, with forums like this one, we are possibly better informed about our own thyroid conditions that we have had to live with for years, than they are with their half hour lecture they probably slept through and should respect that fact and work with us, not at us.
I wonder why it is they think we can't be trusted with it and need a useless Endo? It's not as if taking to much is a pleasant experience 🤷♀️
• in reply toTiggerMe
But they think it is! Thats where the issue lies, I think. How many times have we heard someone repeat what their endo said about how "it's like speed" or "we'd all feel better being slightly hyper" or some other twaddle.
As if the aim of most hypo patients isn't to feel well but get high 🙄
But is it any worse than the other pills people pop for the same effect which are so easy to get hold of but contains who know what? It's not as if their 'prescription only' tag stops people from accessing it?
• in reply toTiggerMe
I'm agreeing with you!
If people want to do themselves harm they will find a way.
Yes, sorry 🤗 I just wonder who decides these things and why they take so long to change 🙄 with them being under their control isn't good for our health either!
I was thinking about approaching my MP and that made me really grumpy 🤣
• in reply toTiggerMe
I read a book by a retired doctor who said "Change happens one death at a time"
The top-of-the-chain professors hold the influence but stop researching. Meanwhile all the 'underling' students are researching new avenues unable to raise the findings for fear of being cast out by The Professor.
When The Professor dies the students are free to share their findings and become The New Professor... Ad infinitum.
Made a lot of sense to me.
I guess this cuts both ways, when all the old Prof of NDT died off we are left with the T4 only believers 🙄 you would think we would have learnt by now... if only we were a little more Chinese sometimes 🙃
• in reply toTiggerMe
Yes, but I think Biano is proof that things are starting to change. We've been left with the T4 theory but the next round will be different.
I remain optimistic!
I wrote to my MP about Prof Pierces remarks on Instagram ridiculing hypothyroid patients. At least it looked like one of his remarks and being President of the BTA at the time and therefore responsible - in that ‘the buck stops there’. It was truly disgusting behaviour of an alleged professional/body Normally my MP is usually pretty good but as yet no reply. Recently I thought about following it up but it made me grumpy too.
I suggest you get over your grumpiness and get writing again asking for a reply to your initial letter. You know the saying “a squeaky wheel gets most oil”. Go for it. 😊
I have to admit, my MP has always replied to my letters and has offered his help by taking up my case.
I fully intend to now I have remembered.
Fruitandnutcase• in reply to
Exactly - for a while after I fractured my wrist I got great pleasure in buying up extra boxes of paracetamol - I had no intention of ever overdosing it was just on principle because it had been decided that you were not allowed to buy more than two boxes. Which is ridiculous because if anyone really wanted to harm themselves they could do what I did. For a start two boxes of 32 capsules counted the same as two boxes of 16 capsules - what’s the point in that?
The whole idea was so silly that I decided to buy some from every pharmacy / supermarket I passed - just to prove I could buck the system.
I did this too when they brought in the restriction - I didn't even need them. I just did it because ...
Don’t forget diabetics. How often do we see insulin on TV crime stories being a murder modus operandi! But they are left to administer their own meds according to their bloods.
in Greece a box of 30 x 25mcgs Uni Pharma costs €2.70 otc 🤷♀️
Gosh, they’ve gone up by 40 cents. The last time I bought them they were €2.30 😱I don’t know the current price of Tiromel in Turkey but they come in 100 tablets per pack. This just makes a mockery of the price the NHS is being charged for the same product. What makes it worse is the fact that you get charged double the NHS price for the same product via a private prescription. We are being totally ripped off and nobody seems to want to do anything about it.
If it wasn’t so true you would say ‘you couldn’t make it up’. What is wrong with this country! How can our ‘leaders’ and I mean of all political parties not see this sort of thing. Why are we the only people shouting about I? Something, somewhere is very wrong.
I agree but we’re only the patients, what do we know ☹️
yesss! Getting a SST is a real result! Well done EEYORE! Ovi all the other stuff they’re blabbering on about is the usual useless, uninformed endo vomit and can be discarded as toxic waste 🙃
For information on how the SST should be carried out, read pages 68 - 70 in the Endocrine Bible :
imperialendo.co.uk/Bible201...
Many doctors won't order the ACTH test to save money, they'll just test cortisol. If the ACTH test isn't done then there is no chance of getting a diagnosis of Secondary (or Tertiary?) Adrenal Insufficiency even if it applies.
The different types of Adrenal Insufficiency are described on this link :
I am sure that they have sent round a draft letter to all these Endos so they can all be writing the same format to patients! Apart from the part about Adrenals all the thyroid bit and especially the closing sentences have been written to me! That is basically a get out of jail free card because they are stupid enough to think that if we refuse to do what they say, something awful might happen🤦♀️and then they can’t be blamed.
Perhaps we should respond, writing back and turn the tables and tell them that if we were to follow their instructions, they should accept the potential detrimental effects on our health by reducing our hormone dose! Basically that’s what I did when I refused to do what they said!
Interesting, yes bound to be a beginners format, I get a strong feeling I know rather more than she does as not keen on being questioned on the theory and just trots out the same basic facts
I wonder how they correlate that on one hand they think we have CFS and the other suggesting that with a TSH so low we should be full of exuberance yet are disinclined to investigate why that is NOT the case?
I suppose we just have to train them up 😉
Noted for future use!!!!
Dear @@@
This patient has many symptoms of underdosed thyroid replacement, and keeps bothering me wanting to feel better.
I know better than she does about how she feels. I only have round holes and she is a square peg so I give up trying to fit her in the hole.
I have lifted the edge of the carpet and swept her under.
Best wishes etc
Alternatively.
This patient reports she is doing very well. That is undesirable. Therefore my only option is to reduce her medication.
Best wishes etc
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