Back from my appointment : Good evening, everyone... - Thyroid UK

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Back from my appointment

lau99 profile image
lau99

Good evening, everyone. I hope you're all well and have been enjoying the sunshine. :)

I made a post a few days ago asking about some recent bloods which I subsequently deleted, since I didn't necessarily want the responses to colour my viewpoint going into my consultation as far as possibly making me want to downplay how I truly feel to the doctor (a bad habit of mine). I finally had the first of 2 endo appointments (the second one being tomorrow) today.

First, the good news is that I've actually been prescribed a 3 month trial of T3 on the NHS!! I could hardly believe my ears or my eyes as I went to the hospital pharmacy to collect it. The prescription is only for 10mcg daily (versus the 25mcg I've sourced for myself and have been taking at the instruction of my private endo up until now), but I still feel that this is a big step forward.

That being said though, my feelings regarding the rest of the consultation were quite mixed. I left feeling rather confused by what I was told, mostly. For one, I was under the impression from the forum that TSH, particularly post-thyroidectomy TSH, is a poor indicator of...well, really much of anything. Yet, this doctor seemed to rely solely on TSH and told me that any reading above or below the NHS normal range steeply increases the likelihood of death...Additionally, she said that T3 is honestly not a very useful drug generally because it only lasts in the body for 6 hours (??). To get anything from it, she says, you'd need to take a portion of your dose at least 4 times a day. Plus, T3 readings fluctuate so much that they barely indicate anything unless you're severly thyrotoxic (hence why she prefers the 'more stable' TSH reading).

Moreover, she seemed to be able to explain away all of my symptoms as something else besides the (lack of) thyroid (curiously all of them could be explained in ways that would mean I wasn't doing something right...), and said that there was no way I had poor absorption because my TSH has been suppressed on higher doses of hormone. Towards the end of the consultation, I asked her plainly, "In your opinion, do you think there's anything wrong with me?" and she said that she thinks my body is still experiencing a "hangover" from having been so badly thyrotoxic towards the end of my teens/maturation period, to suddenly having a properly functioning endocrine system. She said that I feel unwell because I never knew what "normal" was supposed to feel like.

So...I'm not quite sure what to take away from her commentary exactly, but at the risk of sounding unfair or stubborn or irrational...I don't think I liked it very much. Please let me know what you think, and sorry for the long read!!

69 Replies

You don’t know what normal is so therefore you might be feeling normal?

Apply the same logic to a toddler becoming unwell. Makes zero sense. We know when we are unwell. The body shuts down to repair and protect itself. When we are well we are naturally full of energy and cheerful mostly. It’s insulting. Who knows who is right and wrong about TSH. What I do know is this ain’t in your head and it ain’t in mine.

lau99 profile image
lau99 in reply to cazmania7

I'd be inclined to agree...I can't say I enjoyed hearing that. Though, she's not even the first doctor I've heard that sentiment from. Maybe it's legit? Still, I'm also wondering what makes her even think I'm experiencing a "hangover" if not for my symptoms? And if my symptoms are all just things that 'normal people' experience or can be fixed with lifestyle changes, then how did she conclude that they were from a thyroid hangover in the first place?

cazmania7 profile image
cazmania7 in reply to lau99

Same mate. I’ve been asked about my family history like it’s got anything to do with anything. Literally. One day I’m nine stone and jogging and loving life the next I’m unwell daily and the stairs leave me breathless. It ain’t in my head and I can’t believe any emotional stress or trauma would manifest itself so suddenly and so permanently. It’s just a blag cos they don’t know what else to blame it on. Even if having a low TSH will shorten my life I’ll take that over a long life feeling like this. I’m feeling hopeful though that you’ll get well buddy. So many have on this forum and I want this for you too. Time will tell

lau99 profile image
lau99 in reply to cazmania7

It's so sad we're in this predicament...but it's always comforting to hear from you, caz :) At least we aren't alone! I mean, I know I was young the last time my health was 'normal' (probably about 15 before I started getting hyper symptoms?) but I don't remember feeling like this at all...I don't want to call her out, but it just seemed like she couldn't even get her story straight. How can I be experiencing a thyroid hangover (let alone one apparently bad enough to justify prescribing the most expensive thyroid replacement in the UK), yet be "totally normal" at the same time??

BrynGlas profile image
BrynGlas in reply to lau99

I was fine until aged 45, when the early menopause cropped up, I gained weight after being 12/14 sized I all of my adult life except when preggers. It all started then and I have honestly never felt well since. 69 this month, who would want to live like this??

lau99 profile image
lau99 in reply to BrynGlas

I've been very small my whole life too, so looking like this definitely makes me feel strange and sometimes bad about myself, especially since I'm only 21 and would like to be able to feel good in photos with my friends...I tried showing her my facial puffiness by comparing a photo of myself from a month or two post-thyroidectomy next to a more recent one, but she basically just told me I'd gotten fat and I wouldn't be able to eat whatever I wanted and stay slim like I used to (what a huge assumption! I never said anything about my typical diet, or that I was only concerned about the puffiness because I "looked fat"...). Somewhat thankfully my private endo told me today that the likelihood is that it is water retention because of how it looks swollen rather than chubby, but it was a bit hurtful/embarrassing for her to say that...I feel like it took a bit of courage for me to even show her that photo, because I look just terrible in it :( She just went on to say that I might just gain fat in "unflattering" (her words) areas, while she only gains weight in her hips and thighs....

BrynGlas profile image
BrynGlas in reply to lau99

OMG at least I had had 3 kids, you have your life in front of you and I am so sorry that you have got this trouble at your age. Hope you get well very soon.

Mistydeb01 profile image
Mistydeb01 in reply to lau99

She had no right saying that to you. Regardless of the reasons for weight increase, body shaming someone, especially a young woman is abhorrent. These so called drs make me so angry, they talk shxt because they don’t know enough. My weight yo yo’s every few years, at the moment I’m in a skinny phase at 48kgs and they blame me for not eating enough. When I’m in my bigger stage they say I eat too much, but my diet and amount doesn’t change that much. They are not drs anymore, more like bullies, unfortunately they hold a lot of power and their are too many ‘bad’ ones. I hope you don’t have any lasting damage from her words...they were wrong on a lot of levels. X

lau99 profile image
lau99 in reply to Mistydeb01

Thank you for showing me such kindness, Mistydeb. It did hurt my feelings when she said that...and it almost felt like she was bragging when she told me that she hardly gains any weight while being hypothyroid herself in the same sentence, though I'm sure that wasn't her intention...that would just be a bit too mean. My concern isn't necessarily about the weight gain itself, but the fact that it is so extremely unusual for me. Even before I developed Graves', I've always been very small, and everyone in my immediate family is much the same. It isn't normal for me to look this way, and it feels almost like I'm swollen? But she didn't want to hear any of that. I didn't like how she implied that I'd just gotten used to being lazy with a bad diet when I was hyperthyroid. It wasn't necessary.

BrynGlas profile image
BrynGlas in reply to cazmania7

I would be inclined to turn my voice recorder on on my phone next time.

Well, I would want to, but I too would probably not have been able to go through with it in case they caught me in the act.

Arguing with a GP is enough for me and it never gets me far anyway.

lau99 profile image
lau99 in reply to BrynGlas

I had the same thought - she said so many conflicting things that I wondered if I should be recording so I could try to make sense of it all later...

SeasideSusie profile image
SeasideSusieAdministrator

I'm not quite sure what to take away from her commentary exactly, but at the risk of sounding unfair or stubborn or irrational...I don't think I liked it very much. Please let me know what you think

I think she should go to the top of the class and receive a gold star for spouting a huge amount of rubbish.

this doctor seemed to rely solely on TSH and told me that any reading above or below the NHS normal range steeply increases the likelihood of death

Ermmm, I think I should be dead then.

I started keeping a record of my results back in 1995 and my TSH at that time was a whopping (!) 0.5 (0.0-6.0) and ever since then (26 years) it has been suppressed except for 3 occasions when it scraped into range, the highest being 0.9 (0.4-7.0).

I think I might have picked up on this:

any reading above or below the NHS normal range steeply increases the likelihood of death

and asked if that's the case, why does the NHS make patients wait until TSH reaches 10, not just over range but way, way over range, before making a diagnosis of hypothyroism.

she said that T3 is honestly not a very useful drug generally because it only lasts in the body for 6 hours (??)

Ermmm, no, it has a half life of 24 hours but it stays in the cells for 3 days - greygoose can explain that better than me.

To get anything from it, she says, you'd need to take a portion of your dose at least 4 times a day.

Some people find that multi dosing is better for them, I take mine in 2 doses, some people do very well taking it all in one dose.

Plus, T3 readings fluctuate so much that they barely indicate anything unless you're severly thyrotoxic (hence why she prefers the 'more stable' TSH reading).

A really nice graph showing daily rhythm of thyroid hormones - T3 being the 3rd one down - is here.

healthunlocked.com/thyroidu...

Yes, it does show it fluctuating but when you look at the range used - 5.2 - 5.8 - then see that the lowest point is about 5.3 and the highest point is less than 5.7 then I think we can dismiss what she's said.

I think she's trying to make herself look like she knows what she's talking about.

lau99 profile image
lau99 in reply to SeasideSusie

Thank you for this input, SeasideSusie :) I had a feeling I wasn't totally crazy or misinformed...I did ask a lot more questions during this consultation than I usually do, but I always find it so hard not to start believing what these doctors say when they say it with such conviction. Could you refresh my memory on why exactly TSH is a poor measure of thyroid function/hormone replacement for thyroidectomy patients?

SeasideSusie profile image
SeasideSusieAdministrator in reply to lau99

TSH is not a thyroid hormone, it's a pituitary hormone which acts as a signal to tell the thyroid to make hormone when it detects there isn't enough - Thyroid Stimulating Hormone. So if you have no thyroid then it can't accept a signal (and it can't make hormone).

For every thyroid patient, whatever is the cause of their hypothyroidism, it's the FT4 and FT3 which are important, T4 and T3 are the thyroid hormones and it's FT4 and FT3 that tell us how much hormone we have and whether we need our dose adjusting.

Hylda2 profile image
Hylda2 in reply to SeasideSusie

Oh lor! Mine’s always 0.01 or .02! Still, my cardiologist is happy with it, I’ve talked my doctor into it, at least for now, and I’m a great-grandmother 🙄

Words fail me. Well done for not thumping her. Welcome to it’s all your fault and nothing to do with fact you’ve had your thyroid out world. Fantastic they’ve given you trial. Now you need to sing it’s praises. I only get 5mcg prescribed and self source the rest. Good luck.

lau99 profile image
lau99 in reply to Hay2016

Terrible that they have to act this way...as if thyroid disease isn't a painful enough ordeal without being told you're crazy on top of it all...you make a good point though. I hope I won't have to be false in singing its praises and that it really does work for me, but I will certainly have to make sure she knows it does so they don't feel tempted to take it away from me...

shaws profile image
shawsAdministrator

Re the 'T3 statement "T3 is honestly not a very useful drug generally because it only lasts in the body for 6 hours". She is wrong.

One of TUK's Advisers was a scientist/researcher and expert on the use of T3 (which he himself took).

He stated that one daily dose of T3 saturated all of the T3 receptor cells, and that one dose lasted between one to three days by sendingout 'waves'.

I tried it and took one dose. Took none on day 2, or day 3.and 'yes' it lasted and I would state 4 days. I didn't want to go without T3 longer than that.

Also is she aware that levothyroxine (T4) is an 'inactive thyroid hormone'? I doubt she is aware that it has to change to T3 - T3 being the Active Thyroid Hormone needed in our millions of T3 receptor cells, the heart and brain contain the most.

lau99 profile image
lau99 in reply to shaws

Thank you for this clarification, shaws. It didn't sound right at all when she said it - I knew for a fact that the half life of T3 was at least a couple of days so it just didn't make any sense that it only lasted 6 hours in the body...what exactly does that mean? I've had a few doctors not want to test T3 before, but never had I heard one allude to it being a nearly useless marker before today...

shaws profile image
shawsAdministrator in reply to lau99

I think she means that it takes about six hours to digest and obviously needs hypo patients to keep her 'in line'.

The two most important, I think as does some other members, are the Free T4 and Free T3.

urmc.rochester.edu/encyclop...

shaws profile image
shawsAdministrator in reply to lau99

They fail to know that T4 - levothyroxine (is an inactive thyroid hormone) and should convert to T3 - liothyronine (active thyroid hormone).

Many of us wont have many problems, except if our dose is too low or too high. We do not have levothyroxine receptor cells. We have T3 receptor cells.

What you've just experienced is called 'Gaslighting'. It's a method that doctors and psychopaths use to blame the other person (patient, wife, girlfriend, etc.) for their own short-comings. It has long been a practice of doctors to blame the patient when they don't know what's wrong with them. This woman obviously knows very little about thyroid. You don't need to be fair to her, because she hasn't been fair to you. And I really don't think you're being irrational. Being stubborn can often be a good thing. lol After all, it got you your T3!

Reading through your post, she was wrong on just about every point. But especially about T3 not being 'a very useful drug' - for a start, it isn't a drug, it's a hormone, she's confusing it with aspirin! At the risk of repeating what others have said, the half life of T3, in the blood, is about 24 hours. That means that if you took 10 mcg this morning, you'd have 5 mcg left - minus what got into the cells - tomorrow morning. And 2.5 approx the following morning, etc. But,t hat's ok, because every morning you take another 10 mcg, or whatever, so there is always some in the blood.

But, it doesn't do anything in the blood. It has to get into the cells to work its magic. And, once it's there, it stays there for about three days before being converted to T2. But, just as happens in the blood, it is continually being topped up by your daily dose.

shaws said that she once experimented by staying off it for four days, and found that it was still 'working' for her at the end of that time. Not trying to up-stage anyone, but I once stayed off my T3 for six months, and I was fine. ish. At the end of that time, though, I noticed I was putting on a bit of weight! Of course, I had been on about 200 mcg a day before that, and, of course, the more you take, the longer it lasts. lol So, there must have been quite a build-up in my system to last that long. And, no! I would not recommend anyone try that at home! But, I'm still here to tell the tale. So, if you have to see this woman again, tell her she needs to go back to school, or take evening classes in endocrinology, or something, before she kills someone! :)

lau99 profile image
lau99 in reply to greygoose

Thank you, for the kind words and for sharing your experience, greygoose :) I certainly got the feeling that she was (perhaps unintentionally?) gaslighting me quite a bit during the appointment. She kept alluding to the fact that she's got hypothyroidism and all she takes is Levothyroxine, but look! She's skinny and her TSH is perfectly within range! So it must be my fault that I've gained all this weight and even if it wasn't, my old weight just must not have been healthy anyway so it didn't count. Good for her, I guess, but I feel like the fact that she has a thyroid and I don't is a pretty important detail there...

I showed her a side-by-side image of myself a couple of months post-thyroidectomy versus last year, to demonstrate my puffy face and eyelids since becoming hypo. She acknowledged that my eyes did look puffy, but said the rest is just that I've gained weight and since I didn't do any muscle training to gain back my lost muscle mass from having Graves' myopathy (that is the first time I'm ever hearing that??), that's why I've gotten fat in "unflattering" areas...it made me feel a bit embarrassed...she also didn't address my gastro problems and instead just suggested I try laxatives again. Hardly a long-term solution in my opinion, but at least I have the T3 :)

greygoose profile image
greygoose in reply to lau99

Got an answer for everything, hasn't she! I do hate doctors that say things like 'look at me, I'm ok, so you should be too'. Do they have no sense of individualtity? We don't all come off the same conveyor belt.

shaws profile image
shawsAdministrator in reply to lau99

I think that a majority of medical professionals don't really understand what is the purpose of thyroid hormones. Of which we must have optimum for our body to function normally from head to toe.

If the Active Thyroid Hormone is T3, why do they insist on T4 only. They could prescribe a T4/T3 combination. The brain and heart have the most T3 receptor cells.

Thousands appear to do fine on levothyroxine and I'm sure they won't be searching the internet for help/assistance.

I had a doctor who pronounced to me that 'your TSH is too low: your T3 too high: and T4 too low. "Yes doctor that's correct because I take T3 only, so TSH will appear high and T4 low. The next statement was but T3 converts to T4. "No doctor that's not the case it is T4 that converts to T3.

"She said that I feel unwell because I never knew what "normal" was supposed to feel like." That has got to be one of the most stupid/insulting/uncaring/dismissive (and probably often used - sigh) statements ever.

I remember what it was like pre Hashi's, it is very different to how I have felt since, and I haven't had my thyroid removed.

"properly functioning endocrine system" WTF. I'm not going to say anymore than that, other than "You are not alone". 🤗

lau99 profile image
lau99 in reply to nellie237

Thank you, nellie237 :) It wasn't nice to hear...I think it was around that point in the consultation that I began to get tearful. Why do so many doctors stop seeing us as people? Of course I had a life before Graves' took it over and I blindly trusted doctors to believe that thyroidectomy was the right choice... Nevermind. At least I got the T3 and a lovely, kind community here xx

Hey there :

So, my guess is that this is Devon CCG and I think I remember 10 mcg T3 being the maximum they prescribe.

So if we follow this through has she advised that you quarter this tablet and take 2.50 mcg at 6 hourly intervals throughout the day ?

Well. I too have Graves but had thyroid ablation in 2005 and suffered this hangover for around 12 years and if I hadn't started self medicating my hangover would have continued for the rest of my life.

This thyroid hangover doesn't respond to Alka Seltzer but to full spectrum thyroid hormone replacement - maybe she needs to learn the difference.

Fingers crossed for tomorrow :

lau99 profile image
lau99 in reply to pennyannie

Hi Penny, always lovely to see you pop up in my notifications. Hope you have been well :) You're right - this is Devon CCG, in fact it's one of the doctors from the ThyroidUK list. Funnily enough, she's instructed that I take half in the morning and half before bed, despite her comment about it only lasting 6 hours. But I shall see what my private endo says tomorrow. I agree. I didn't sign up to be hungover for the rest of my life so I'm not sure I appreciate all these endos' flippant attitudes towards our struggles...it makes me angry every time they spring a new consequence of this wretched thyroidectomy onto me years after having one, when they never bothered to tell me beforehand.

pennyannie profile image
pennyannie in reply to lau99

Well, they are all just empty words because they can't or don't know how to help you :

So was she planning on your continued topping up of this inadequate prescription or believed 10 mcg T3more than enough, irrespective of where your T3 level sits, in or out of the range ?

It is deplorable and as you know all this bulls...t simply exacerbated my symptoms making me more unwell and in fact, finding the confidence to treat myself has been my saviour.

So, onwards and upwards- drive over the county lines and see what's going on somewhere else.

Drive safe :

P.S. Just reading through everybody's comments :

Your feedback loop is broken which is why you must not be dosed and or monitored on a TSH blood test BUT on where your T3 and T4 levels sit in the ranges.:

Your feedback is broken because you no longer have a thyroid and your hypothalamic-pituitary- thyroid - HPT axis - isn't there any longer and the conventional feedback systems. like the TSH, do not apply when you haven't a thyroid through either surgery or RAI thyroid ablation.

Ah, but I was told that my pituitary gland didn’t know my thyroid was dead so the TSH is a very good indicator 😱

Well, I'm not sure if the memo comes via an email, twitter or facebook but nonetheless the link is faulty with little or no broadband connection leaving us falling through these stupid guideline nets.

Good to hear from you :

I’m not doing very well at all, I’m having all sorts of side effects from everything I’ve tried so far but, hey ho, onwards and upwards. Hope you’re doing OK and still got a good supply of Thyroid S.

BrynGlas profile image
BrynGlas in reply to Gingernut44

OMG, it makes me want to weep a very great deal!!!!

Dustpan profile image
Dustpan in reply to Gingernut44

That’s exactly what I was told and that the thyroid still makes a little t3 also, even though I had a TT

Gingernut44 profile image
Gingernut44 in reply to Dustpan

Makes you wonder doesn’t it 🤬

Dustpan profile image
Dustpan in reply to Gingernut44

It certainly does, the only time these drs / endos will understand things is when they have to go through it themselves.

I had the same commentary to me.

I’m a hyper patient, so being euthyroid feels like shit. Oh okay, I guess feeling like garbage is the new healthy.

lau99 profile image
lau99 in reply to Meanbeannyc

Terrible, isn't it, Meanbean :( I can't believe how they don't see anything wrong with saying things like that. Do they realise it's hurtful? Perhaps I might have to ask that next time.

Meanbeannyc profile image
Meanbeannyc in reply to lau99

Imma just demand more LOL

I'd remember her name and simply ask to see another Endo next time. You could see if any are in Thytoid UK's list.

lau99 profile image
lau99 in reply to JAmanda

Ah, I waited so long to finally get to see her (technically roughly a year) after initially finding her on the ThyroidUK list, so I think I will at least see her one more time in 3 months before making a decision, I'll just have to be more sure of myself next time :)

Hi lau99💗

First of all I'm so sorry to hear how you are feeling 🤗.. Wonder if we saw the same endo as mine said the same about TSH being the best indicator of how your body is performing, and testing T3 T4 was not necessary, I myself were thyrotoxic in hospital for 12 days in thyroid storm, I eventually lost my thyroid in 2019, my endo had me on T4 first but this certainly did not work for me I had 8 months of sheer hell trying different kinds eventually getting T3 prescribed but it took some time, my bloods are now looking OK, unfortunately I'm not, but this is more to do with high calcium /pth found on my thyroid blood tests, endo said it could be hyperparathiyroidism, I asked one simple question before I had my thyroidectomy will all these hyperthyroid symptoms go,their answer YES... I'm unsure about that, 🙄🙄 2019 I had full thyroidectomy it's 2021 and I feel no better but of course that could be the hyperparathiyroidism, but there even dragging there heels with this, I just want to feel well again, like yourself, I've never managed to get back to any kind of fitness training, I was a gym bunny before all this, my excersise bike is in the spare bedroom collecting dust😢 I'd love to get bk on it... Best of luck with you health 💗💗💗

I really feel for you! You need to ask for a copy of the letter which will be sent to your GP. I would have been totally confused by what you have been told. I think I'd have had an inward scream!

lau99 profile image
lau99 in reply to Knip

Thankfully she said she'd send me a copy in the post...though rather than an inward scream I did have a bit of an outward cry 😅 Like you, I was so confused mostly because her commentary didn't match up with her actions at all! How can I be in a "thyrotoxic hangover" 2 years after having my thyroid taken out, yet be normal at the same time?? And why would either of those things justify her prescribing T3, yet she did it anyway? And how can she insinuate that these symptoms are partially my fault, when I certainly didn't remove my thyroid myself, nor was I told anything about having to muscle train specifically (no cardio, just weightlifting) until literally yesterday??? I just don't know for these doctors sometimes. You certainly can't fault their creativity! 🙄

BrynGlas profile image
BrynGlas in reply to lau99

I just want to wonder, if you were just Hypothyroid and hadn't had your thyroid removed, what the hell might she have said to you then?

I am more and more thinking that I wish I knew what my thyroid levels were prior to 1997, when I had a life, no weight or other issues and could actually enjoy life.

They really would have put me in the funny farm if I had asked for a thyroid test while feeling good wouldn't they?

lau99 profile image
lau99 in reply to BrynGlas

Probably that because she's hypothyroid and takes levo without any problem, that I should be fine too...I just feel like all of the doctors I've encountered on the NHS have far too simplistic of a view on thyroid issues. Even just disregarding the science, they all seem to lack knowledge and tact in the emotional element of having a long term, sometimes debilitating and life-altering illness, and definitely in the empathy department. They just don't need to say half the things they do. It just borders on mean sometimes.

NIKEGIRL profile image
NIKEGIRL in reply to lau99

I could not have said that better. The words that come out out of their mouths is something they can consciously choose for themselves. The words and statements are at times insulting, rude and down right disgustingly inhumane. Hence why my son and I have trauma from drs and I have avoidance behaviour. No doubt my fault.

lau99 profile image
lau99 in reply to NIKEGIRL

I'm so sorry to hear about you and your son's negative experiences...doctors really seem to forget that we're people with feelings and other things to worry about underneath all of our symptoms and illnesses. It gets too much to deal with on its own sometimes, and that's without the nervewracking consultations and insensitive comments...Once I've gotten my physical health under control, I'll definitely be taking your advice from another one of my past threads and be looking into some trauma therapy after all of this 😢

NIKEGIRL profile image
NIKEGIRL in reply to lau99

Thank you for such a kind and sweet reply. You are so young. You are my sons age. You have a lifetime full of joy and happiness ahead of you. Try not to give these drs your energy. I’m sending u love and best wishes for this T3 for you

BrynGlas profile image
BrynGlas in reply to lau99

It has to be because they have no empathy with their patients. They just have never experienced it, so they have no idea how we feel as hypo. When it started to happen with me, feeling cold, exhaustion, gaining weight, I couldn't wear my rings, etc etc I blamed myself for a long period. I was not dieting properly, (I had never had to diet before!) eating the wrong food, etc etc.

The GP who diagnosed me eventually actually apologised to me because I had seen him many times with these sorts of problems before he finally tested thyroid function. And I had not heard of anyone who had low thyroid, ever. I thought it was a really rare thing and I still don't know anyone personally who is hypothyroid.

My family is all Type 1 diabetes, asthma, eczema, coeliac, no obese family members either. I am a bit different though in that I was diagnosed temporal lobe epilepsy in about 1985 and I know I had it long before then, I just didn't know what it was, because I had never lost consciousness.

I just used to have these strange feelings and after that I used to get this terrible exhaustion coming over me. That was the worst part of it. My mother still has the idea that epilepsy is something to be ashamed of, she speaks about it in hushed tones, as though it was something that someone with maybe learning difficulties could have then!

Then I started gaining weight, and it turned out to be low thyroid she would ring up and tell me that she had bought some item of clothing and it was much too big for here, so could I go and collect it, because it was much too big for her! LoL She doesn't think that she is at all being obnoxious though. My nickname for her is Mrs Bouquet!!!

It is just that these things, diabetes, epilepsy, lowthyroid etc etc were unknown in the family until my generation. Though eczema and asthma were and of course the 2 go together as we now know.

Sorry I have go on a bit too long.

birkie profile image
birkie in reply to BrynGlas

Hi lau99❤️Hope you don't mind me joining this conversation 😊but like you said what would they do if you were hypothyroid? And still had your thyroid intact.. This is the problem, I find the endos/GPS act towards thyroid patients who have no thyroid ( mine removed 2019 it was very toxic) as your hypo so let's get you in range with meds, my bloods apart from one when my gp was forcing me to try T4 were never hypo.. I've never had hypo symptoms, my take on it is they... The medical profession cannot just assume we will be hypo the minute our thyroid is removed, for a start the people who have been diagnosed as hypo with thyroids intact, my late mother and one of my friends) will no doubt be diffrent to us who have no thyroid at all!! And GPS and endos must stop just labeling us as hypo and we will be well with thyroxine or T3 which is a hard thyroid drug to obtain, it goes deeper than just popping a pill 💊💊

lau99 profile image
lau99 in reply to birkie

Hi birkie :) of course I don't mind xx I couldn't agree with you more. I just can't believe the sheer magnitude of things that have happened to me post-thyroidectomy that I was never informed of! How easy would it have been for just one person to say, "There's currently only one type of thyroid replacement readily available on the NHS, so if that doesn't work for you after the surgery, you will have a very difficult time getting supported in finding any of the other, more scarce alternatives". That alone would have given me pause, and they certainly knew what their stances on T3 and NDT were in 2019, so why did no one say anything? It's heartbreaking how they saw a teenager suffering as I did and not a single person in the know stepped in to look out for me :(

birkie profile image
birkie in reply to lau99

Hi lau99❤️🤗🤗

It's so sad you have lost your thyroid being so young,😢😢😢 can I ask why they removed yours?.. Unfortunately I had no choice as I'd been going bk and forth to my gp for a year with hyper symptoms and he kept saying it was the menupause, after diagnosis they put me on anti thyroid drugs both of which my body rejected, eventually going in to thyroid storm, T4 was 100 T3 was 39.5 TSH was suppressed, the doc on the ward who was lovely asked what results did I get from my uptake scan I said I've not had one, he got the endo to give me one I had uptake on both lobes and it was thyrotoxicosis, endo said only cure is to remove the thyroid, I asked if all these symptoms would go after thyroidectomy he said yes of course... 🤷‍♀️... And T4 will make you feel your old self... 😂😂

lau99 profile image
lau99 in reply to birkie

Hi birkie :)

So sorry to hear what a difficult time you've had with all of this :( Sadly I lost my thyroid for similar reasons - I had very treatment resistant Graves' disease which was attacking my thyroid and my eyes quite aggressively. It was difficult living day to day; less so because of the actual symptoms of being hyper, but more because of the side-effects of the carbimazole. It was quite hellish indeed...between weekly GP/endocrinology appointments and blood tests, my falling grades at university from being so ill and in pain, thyroid eye disease and going to counselling for depression on top of it all, it just became too much for me to bear and I thought at the time that I needed a more permanent solution...I was never able to go into remission of Graves' for longer than a few weeks at a time without experiencing a relapse even stronger than the last. I wasn't a good candidate for RAI due to my eyes, and my endo at the time led me to believe that partial or subtotal thyroidectomies were an outdated practice, so I had little other choice than to get rid of the whole thing. I wish things had turned out differently.

"told me that any reading above or below the NHS normal range steeply increases the likelihood of death.. "

Incorrect ...... and as usual, a poorly understood 'half truth' parroted back by an Endo /GP as 'fact'...

this is the full story that is the origin of that half truth... and if read carefully it tells a very different 'truth' academic.oup.com/jcem/artic... Serum Thyroid-Stimulating Hormone Concentration and Morbidity from Cardiovascular Disease and Fractures in Patients on Long-Term Thyroxine Therapy

Robert W. Flynn, Sandra R. Bonellie, Roland T. Jung, Thomas M. MacDonald, Andrew D. Morris, Graham P. Leese

The Journal of Clinical Endocrinology & Metabolism, Volume 95, Issue 1, 1 January 2010,

Context: For patients on T4 replacement, the dose is guided by serum TSH concentrations, but some patients request higher doses due to adverse symptoms.

Objective: The aim of the study was to determine the safety of patients having a low but not suppressed serum TSH when receiving long-term T4 replacement.

Design: We conducted an observational cohort study, using data linkage from regional datasets between 1993 and 2001.

Setting: A population-based study of all patients in Tayside, Scotland, was performed.

Patients: All patients taking T4 replacement therapy (n = 17,684) were included.

Main Outcome Measures: Fatal and nonfatal endpoints were considered for cardiovascular disease, dysrhythmias, and fractures. Patients were categorized as having a suppressed TSH (≤0.03 ), low TSH (0.04–0.4 ), normal TSH (0.4–4.0 ), or raised TSH (>4.0 ).

Results: Cardiovascular disease, dysrhythmias, and fractures were increased in patients with a high TSH: adjusted hazards ratio, 1.95 (1.73–2.21), 1.80 (1.33–2.44), and 1.83 (1.41–2.37), respectively; and patients with a suppressed TSH: 1.37 (1.17–1.60), 1.6 (1.10–2.33), and 2.02 (1.55–2.62), respectively, when compared to patients with a TSH in the laboratory reference range. Patients with a low TSH did not have an increased risk of any of these outcomes [hazards ratio: 1.1 (0.99–1.123), 1.13 (0.88–1.47), and 1.13 (0.92–1.39), respectively].

Conclusions: Patients with a high or suppressed TSH had an increased risk of cardiovascular disease, dysrhythmias, and fractures, but patients with a low but unsuppressed TSH did not. It may be safe for patients treated with T4 to have a low but not suppressed serum TSH concentration.

lau99 profile image
lau99 in reply to tattybogle

Thank you so much for this context, tattybogle :) It's the last line in particular that stands out to me though - so it is dangerous to have a suppressed TSH, but a low one is fine? To her credit, she did pretty much say to me that she wouldn't mind as much if my TSH was at the very bottom of the range, but not suppressed. Also, I wonder if any of these patients in the sample had undergone total thyroidectomy? I would wager that TSH might be at least a little more accurate for hypo patients who at least have a thyroid (or part of one), but it seems that all my doctors seem to forget that I literally don't have one inside my body anymore 🤔 Why do NHS doctors hate testing for T4 and T3 so much anyway? Is it that much more expensive than TSH?

tattybogle profile image
tattybogle in reply to lau99

Yes, many of them will have had thyroidectomy , and some of those will have been total.. since they looked at the records of ALL patients on Levo between those years.

Another interesting bit of context from this study ... if you look really carefully at the numbers for the hazard ratio's :-

Cardiovascular disease, dysrhythmias, and fractures were increased in patients with a high TSH: adjusted hazards ratio, 1.95 (1.73–2.21), 1.80 (1.33–2.44), and 1.83 (1.41–2.37), respectively; and patients with a suppressed TSH: 1.37 (1.17–1.60), 1.6 (1.10–2.33), and 2.02 (1.55–2.62), respectively, when compared to patients with a TSH in the laboratory reference range.

In plain English.... this means the 'hazard' of cardiovascular disease is 1.95 for TSH over 4, and it is 1.37 for supressed TSH (below 0.04)

1.95 is a higher risk than 1.37.

So TSH over 4 has a higher risk of cardiovascular disease than supressed TSH does.

so this 'dreadful risk' happens when TSH is over 4... how many GP's or Endo's have you ever heard telling anyone about this 'dreadful risk' of allowing TSH to be over 4 ?

NONE! and the most recent NICE guidelines happily allow you to get to 10 before saying treatment is 'neccessary'... so methinks it's not such a dreadful risk at all, even if TSH is supressed.

It's the same if you look at the numbers for dysrythmia's (which i presume includes Atrial Fibrilation)....

TSH over4 =1.8

TSH below 0.04 = 1.6

So TSH over 4 is the higher of these risks

ONLY the risk for 'Fractures' is slightly higher in supressed TSH group than it is in TSH over 4 group..(2.02 vs 1.83 ) and yet they have the cheek to deliberately misrepresent the conclusions here and use this paper as part of the evidence for guidelines saying 'the risks' are higher for TSH below and above Range'... well, yes 'technically' that's true .... but it's a deliberate fudging of the true findings.

And then GP's and Endo's somehow manage to turn this 'half truth' into 'total crap' and say " if TSH goes out of range your all gonna die"....

My maths teacher told me "there are lies , damn lies , and then there's statistics "

I never fully understood it until i discovered the duplicity that goes on in Thyroid /Me /CFS studies and the resultant guidelines... i do now .

Hey there Dr Tatt :

I think we also need to know if any of these patients had Graves Disease ?

It is known that Graves antibodies can sit on TSH receptor sites for years and this is another reason why the TSH test for Graves patients is known to be unreliable measure of anything and why T3 and T4 blood tests over ride whatever the TSH may or may not do.

....it's done using Data from Tayside between 1993 and 2001 .. "All patients taking T4 replacement therapy were included" (number 17,684)

So there must have been many Graves patients. but they are not separated. It's just looking at T4 use /TSH level / in relation to outcomes over time.

P.s .. i'm not saying TSH is the right tool to use .. but since this is the stick they chose to beat us with, it amuses me to take it off them and use it to hit them back with :)

Thank you - I shot off my question to you before I read properly your reply :

I must learn not to jump before I'm fully ready and know what I'm jumping into !!!

Gingernut44 profile image
Gingernut44 in reply to lau99

The cost 2 years ago, found by a forum member via an FOI request was 90p for TSH, 92p for FT4 and 92p for FT3 so, if all done from one blood sample, comes to a total of £2.74 if my maths is correct.

shaws profile image
shawsAdministrator

Endocrinologist is wrong about how long T3 remains in our system and it is longer than she imagines.

10mcg is a low dose but I hope you find a good benefit in that amount. Has she said you should still be on levo i.e. T4/T3 combination? If so, many do well on the combination. I am not medically qualified but when having a 'change-over' I think dose should be as near as possible to the previous dose.

When we take T3 only, on an empty stomach with one glass of water, its work then begins and the effect of that one dose can last between one to three days.

Dr John Lowe (a scientist/researcher/expert in the use of T3 and a doctor) stated that the effects of one daily dose of T3 saturates all of the T3 receptor cells and that one dose 25mcg can last between one to three days. He himself took his in the middle of the night, so that nothing interfered with its uptake.

I tried this and took one dose of 25mcg - took none on day two and none on day three - and reintroduced it on day four. I was fine and only trialled this once.

I was prescribed by the NHS a number of years ago but they were always 'nervous' about T3 and that makes the patient wary too until they find out that this isn't the case .

I have been recently been re-prescribed by the NHS T3 daily and, so far, I'm fine on it - following Dr Lowe's advice, i.e. once daily dose as it saturates all of our T3 receptor cells and it sends out 'waves' throughout the day that can last between one to three days.

The fact that you've had a thyroidectomy I think at the very least you should be on a T4/T3 combination. I must also state I'm not medically qualified but I cannot take T4 myself as I become very unwell with severe palpitations.

These are some links to Dr Lowe's archived site - an accident caused his demise.

web.archive.org/web/2010103...

Interesting she commented on the fact T3 does not last long in the body. The top thyroid man in neighbouring Cornwall told me the same about 2 weeks ago, “ we do not measure free T3 as it has such a short half life”. He went on tell tell me “I cannot prescribe T3 due to cost. “

He said testing T4 was pretty much a waste of time as well as we don’t actually need this hormone and certainly it doesn’t need to be in range.

He grudgingly admitted that those with pituitary problems may have TSH readings which may not accurately reflect actual thyroid health.

He believes I struggled on levo after my NHS prescribed dessicated thyroid as stopped because I had have been over treated for many many years. “ Too many people look up online the symptoms of hypothyroidism, convince themselves they are unwell and go to the doctor/ endocrinologist for help. I did say that I was diagnosed sixty years ago as a child and had no access to Doctor Goggle in 1960. No one did so sadly that was not how I came to be diagnosed.

He was incredibly arrogant. Thank goodness I did not go to his private clinic and pay for such ignorance and rudeness.

The only worthwhile part was that he knows and a Celts that many patients allege they feel better on ndt and has no problem with my sourcing and self administering it, is telling my GP it’s ok with him. I found that a bit at odds with other comments but I wasn’t going to question it.

Glad you had some success.

OMG, they know how to put us down don't they?

Did you admit to seeing a private Endo? Which I presume meant that you had to leave off your T3 for tests etc??? That would scare me stiff now that my hair is growing back! LoL

I am glad you got there, but I can't understand why on God's earth she gave them to you, despite how little she rates them! But you got the desired result, congrats!!!!

lau99 profile image
lau99 in reply to BrynGlas

They do, don't they...it worked, towards the end I began to cry a little (so embarrassing...) so she finally acknowledged that I've had a hard time with it all, having my Graves' diagnosis at age 17 and a total thyroidectomy at 19. I don't remember if I told her that I also have a private endo who oversees my T3 use, but I did admit to her that I've been taking self-sourced T3. I was lucky in that for my last NHS blood test (the last result she was able to see), I wasn't yet on any T3. She gave me two options: first that I could incorporate some 'lifestyle changes' like weightlifting and taking motility aids and laxatives for my bowel problems, or, she would let me try a 3 month trial of T3, 10mcg a day. Of course, I chose the T3.

I also picked up on that! I wonder why it was so easy to get her to prescribe me the T3 when it was apparently so useless...oh well. I wasn't about to look a gift horse in the mouth :) My private endo was much more helpful today anyway x

BrynGlas profile image
BrynGlas in reply to lau99

Oh, I am glad to hear that. You couldn't go through another appointment like yesterday's. Good luck, hope you see vast improvement dramatically.

shaws profile image
shawsAdministrator

She has gone a 'bit too far' with the following statement:

and she said that she thinks my body is still experiencing a "hangover" from having been so badly thyrotoxic towards the end of my teens/maturation period, to suddenly having a properly functioning endocrine system. She said that I feel unwell because I never knew what "normal" was supposed to feel like.

A lot of twaddle i.e. She said that I feel unwell because I never knew what "normal" was supposed to feel like.

If that was the case, why are you not feeling much better, i.e. with a TSH of 1 or lower and both Frees in the upper part of the ranges, i.e. FT4 and FT3?

TSH is not a 'thyroid hormone' it is from the pituitary gland and it rises to warn us we've got insufficient thyroid hormones (T4 or T3) in our body.

If you've not had B12, Vit D, iron, ferritin and folate checked, ask GP at your next appointment.

That sounds to me like a classic case of gas-lighting : "She said that I feel unwell because I never knew what "normal" was supposed to feel like."

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