Have I developed "doctor phobia" or what...?!

Today I saw my new GP for a follow-up visit. My old one moved away and I stopped going to the

practice for no particular reason.

On Sept 6, during my first visit since July '17, my BP was slightly raised (170/92, heart rate 90). I was put on perindopril 5 mg daily and told to come back today.

Interestingly enough, the first reading this morning was ok: 132/78, heart

rate 80 bpm. The doctor said we’d recheck it a couple of minutes later just

to get a clearer picture. Then, she said the thing I dread the most: ‘can I check your height and weight, please".

I could feel my heart start racing and cold sweat break out all over my

body. I heard myself say: ‘no, I am well aware I’m overweight and I’m

working on losing weight, but having to see my current weight in actual

numbers on a screen in front of someone else, even a doctor, would simply

be too traumatic for me’.

To her credit, she immediately accepted it. But, when she tested my vitals

again, my BP had soared to 180/104 and my HR to over 100 bpm. So she decided to raise my current dose of perindopril, from 5 to 10 mg daily.

The minute I left, I started crying. I just felt so awful at the idea of

having to weigh myself in front of someone.

I tried to explain how I have gained almost 30 kg after weaning off high

doses of steroids, but don’t know how convincing that sounded.

She told me about the importance of watching my diet, exercising regularly, stop smoking and trying to lose weight. So I get the impression it's calories in-calories out she focuses on, and that she cannot understand how steroids can mess up your endocrine system, especially if you already have endocrine disease.

She then said she wanted to order some tests, the same ones I had last week ahead of my appt with my hormone doctor in early Oct. She asked me to email her a copy of the results. Now, I am worried sick how she will react when she sees my suppressed TSH...I doubt she even knows what NDT is, let alone how it affects the TSH.

When she asked me about other drugs I'm on, I did not mention estrogen and progesterone, especially since I'm on bio-identical HRT and most doctors here only prescribe synthetic HRT. In the past, I never mentioned to any doctor I was on Medrol for adrenal fatigue because it's not a recognised diagnosis among mainstream doctors.

But it does feel strange to hide things like that from your doctor, even if she is not responsible for my hormone treatment.

TBH, it feels like I've done something wrong or immoral or even illegal by going outside the national health care system and opting for alternative treatment prescribed by a practitioner who believes that hormonal imbalances are to blame for many of the conditions mainstream doctors treat with statins, blood pressure meds, beta blockers, antidepressants, sleeping pills etc.

How sick is that; to feel guilty about taking matters into your own hands after the standard treatment for hypothyroidism (T4) failed to make you better?!?!

Has anyone else felt despair at the idea of having to explain things to a doctor s/he is not likely to understand nor take into account?

To an outsider, it must seem like I'm desperately trying to find excuses for being overweight and having more trouble than others losing weight...

[SeasideSusie Remembering]

Given that it’s been some time, my new GP checked my BP which was a

little high so she prescribed a drug and told me to come back in ten days.

Sorry, just trying to get my head around this.

Was that your first BP test? And your GP prescribed BP medication on the strength of BP being high during one consultation?

Coincidentally, I have been for a BP check today and was chatting to the nurse. At my practice they always do 3 readings, one after the other, and take the lowest reading. If you have a high BP reading at the surgery you are asked to go back for further testing (or if you have a BP monitor at home you are asked to take a week's worth of readings - test 3 times daily). If you have high BP readings on 3 separate visits to the GP then you are sent to have a 24 hour monitor fitted. Only when all this has been done would the decision be made that your BP is high and medication prescribed.

I was put on BP lowering medication 3 weeks ago after high BP readings at the surgery (which is not uncommon as I get white coat syndrome) and after doing BP monitoring at home. Today was my first follow up which included taking BP and also blood tests including FBC and kidney tests (there may have been others) to check that the medication is not affecting anything, eg electrolyte imbalance.

the first reading this morning was ok: 132/78, heart

rate 80 bpm

.......... my BP had soared to 180/104 and my HR to over 100 bpm. So she decided to raise my current dose of perindopril, from 5 to 10 mg daily.

Well it was no surprise that your BP rocketed given the circumstances but I wouldn't have thought that was any reason to increase your dose of perindopril. Your GP must have realised what caused the increase.

[Hidden in reply to SeasideSusie]

Sorry, what I wrote was not very clear! Will change the OP.

My GP diagnosed me with high BP on 6 Sept (170/92, HR 90). She said it was to make my heart work less hard.

Yes, she raised the dose based on one single reading and after seeing me freak out at the idea of having to step on the scale...but I don't have to take a higher dose, I can just split the pills.

Continental doctors are very keen on prescribing meds and referring patients so specialists. Often to no avail, I've noticed. It's mostly just a waste of time and money.

[Tayhung]

I think I know how you feel. I avoid doctors as much as possible. Always feel wrong footed and on the defensive.

You have eight minutes to get the “expert” in front of you to understand what you have learned about you when they are sticking to the t4 only regime. Takes all self confidence away and self esteem. Leaves you feeling helpless. The battle goes on.

My heart rate sorted itself out when I got my T3 and it also started my weight loss. Slow but it’s happening 2 stone in as many years...

I take Low dose naldextrone and keep it to myself. Yes I feel guilty too

Good luck with your next visit. x

[Nathalie70]

There is something people don't understand: BP is not related to stress. You clearly have a BP issue, not a doctor's phobia as 132/80 is too high already.

[Hidden in reply to Nathalie70]

Yes, but it skyrocketed after I freaked out at the idea of getting on the scale...if stress and BP are not related, why is there something called "white coat syndrome"...?

[DebTex in reply to Hidden]

I agree with you, I have normal blood pressure readings until I get in the Drs. office, I definitely have white coat syndrome too!

[Hay2016 in reply to Hidden]

Def white coat. Mine is 120/70 at home. Shot up to 170/80 at endo appt. darn right I was stressed at the thought of another argument.

[Hidden in reply to Hay2016]

Yes, isn't it typical that we go to the doctor's office more or less prepared for an argument...?!

[bantam12 in reply to Nathalie70]

Stress definitely does affect BP and white coat syndrome causes BP to temporarily increase.

[MaisieGray in reply to Nathalie70]

Nathalie70 You can be hypertensive with an underlying medical condition of course, but equally you can definitely experience blood pressure spikes due to stress/anxiety-inducing situations - white coat syndrome being one such example. Hence why it's often suggested that we have our own monitors at home and simply report our readings instead of being tested in front of the GP.

[greygoose in reply to Nathalie70]

High blood pressure is a symptom, not a disease. It can be cause by many things - including stress and hypothyroidism.

[Jazzw in reply to Nathalie70]

132/80 is not a particularly high blood pressure reading.

[Hidden in reply to Jazzw]

No, the doctor said that was pretty good, then wanted to do a second reading and then it had skyrocketed (after I panicked when she told me to get on the scales...).

[Nathalie70]

BP can increase mildly because of stress but not to 180. For someone with a normal BP that is below 120/80, extreme stress can increase it up to 130/140 but absolutely not to 180.

Anyway, BP is not monitored by a two measurements: your GP has to provide you with a monitor which will read your BP over the course of 24h including when you sleep.

[bantam12 in reply to Nathalie70]

My BP at hospital last week was 190/114 and I don't have high BP normally.

[fibrolinda in reply to Nathalie70]

In an ideal world 3 readings would always be taken, 5 minutes apart and middle reading logged. As instructed by my youngest son who is a nurse. White coat syndrome is something I have had since the year dot, it's even in my med notes. I can get a reading of 130/70 then next one shoot up to 163/80 just because I need the loo suddenly whilst doing reading. Not normally quite so dramatic a rise but marked increase If I get scared or angry etc.

If you have a home bp monitor try taking bp when calm then read something upsetting/stressful/scary and see what happens.

[Hidden in reply to fibrolinda]

Thanks, yes, I've just ordered one to monitor my BP and resting pulse rate at home!

[humanbean in reply to Nathalie70]

For someone with a normal BP that is below 120/80, extreme stress can increase it up to 130/140 but absolutely not to 180.

I'm curious about where you get your numbers from, particularly the reference to 130/140 when under extreme stress, which seems to be unbelievably low. I'm positive that someone having a gun pointed at them or having to do something they are phobic about would have a systolic BP of substantially more than 130 or 140.

As far as your reference to "normal BP" being below 120/80 is concerned, 120/80 is average for adults in the UK. So healthy BP has been defined at a level that immediately makes 50% of adults have high blood pressure. How convenient for people who sell pills.

The problem with BP is that what is "healthy" is constantly getting adjusted downwards, just like the "healthy" levels of cholesterol. I suspect in both cases reality doesn't come into it. It is big pharma balance sheets that are important.

You might find these articles of interest :

drmalcolmkendrick.org/2013/...

drmalcolmkendrick.org/2012/...

[Jazzw in reply to humanbean]

Completely agree humanbean. I’d never call a reading of 130/80 a high blood pressure in any case. A diastolic pressure of 90+ is concerning but it’s only really when it consistently stays over 100 it’s clear there’s a problem. Even then, it doesn’t necessarily require medication—it might indicate a lifestyle change is needed, be that a change to diet or exercise.

But just like everything else, blood pressure has become a thing that doctors are trained to throw medication at...

[Hidden in reply to Jazzw]

So true! When my new GP sees my slightly elevated triglyceride levels (they came back at 166, should be <150), I wouldn't be surprised if she wanted me on statins as well...!

Every time I go into a doctor's office, I mentally prepare myself for a fight for my right to stay on NDT rather than go back on T4 only just to have a "normal "TSH. Sometimes, I ask myself if it's worth it, or if I should just say I am not on any meds or, possibly, that I'm on T4 only. But then they'll invariably want to order labs or see my most recent ones, and then they freak out when they see my TSH (all they care about)...that alone can make my BP rise I think...!

[Jazzw in reply to Hidden]

My late other half was an intensive care nurse. She always said that she’d never take blood pressure medication even if it was prescribed because she had no desire to experience the side effects (I feel obliged to point out she died from cancer, nothing cardiovascular ). She only had one kidney after a botched operation to remove a cyst in her early twenties, so her blood pressure always ran a little high (blood was being routed through one kidney rather than two).

Her blood pressure came right down to normal within days of starting to take liothyronine in addition to levothyroxine.

It’s an n=1 situation but we didn’t see that as a coincidence. I do wonder how many cases of “high blood pressure” are actually untreated or undertreated hypothyroidism.

[Hidden in reply to Jazzw]

That's great to know, thanks!

I had to go off NDT and back on T4 only recently after developing hyper-like symptoms with bottom-range FT4 and FT3 about 70% through range. So not over-medicated. I suspect it's adrenal-related. I am waiting for results of a diurnal saliva cortisol test before treating. I've previously been on Medrol 4 mg daily for adrenal fatigue but went off it when I was put on very high doses of steroids a year ago (after being diagnosed with autoimmune encephalitis). I even received as much as 1000 mg of methylprednisolone IV for five days and then was put on 100 mg of pred. Even after I weaned off the steroids after six weeks, things never went back to the way they were. With the valuable help and input from others here, I am beginning to suspect that those megadoses of steroids knocked my own adrenals out for good and that I may require life-long cortisol replacement. Feeling hyper while having labs pointing to hypo is often an adrenal-related problem and some doctors, like Dr. Durrand-Peatfield, recommend treating adrenals first before adding thyroid. Since I'm already on T4 I will stay on it since my problem seemed to be with the T3 in NDT, and then try to go back on NDT once I sort my adrenal problems out. I've done great on it for years so hopefully I will be able to go back on it soon. The first hypo symptoms are beginning to return a week after I went off NDT, but at least I can no longer feel my heart race all the time.

[Jazzw in reply to Hidden]

It’s a minefield we shouldn’t have to navigate alone—and yet somehow we have to, because doctors aren’t taught this stuff anymore. It used to be common knowledge for example that high cholesterol was a symptom of hypothyroidism.

And yet when we try to demonstrate that we’ve done our research, all we get is ridicule. In this age of readily available medical information, we’re told not to google symptoms. How ridiculous is that?

I hope you find a way through. I’m sure you will x

[Hidden in reply to Jazzw]

Yes, I'm sure of that, too! I am used to self-diagnosing and -treating. I have a great hormone doctor whom I only see once a year so, between visits, I'm pretty much on my own...which is why forums such as this one are invaluable. Although I consider myself fairly enlightened when it comes to thyroid disease, having lived with hypoT for the past 20 years and done a lot of research, I know much less about adrenals, sex hormones, and the connection between thyroid disease and things like blood pressure, cholesterol, depression, diabetes, growth hormone... just to mention a few.

The ignorance of many doctors today is frightening, borderline criminal IMHO. Last year, I was hospitalised in a neurological unit after being diagnosed with autoimmune encephalitis. The diagnosis was made thanks to a good doctor who made the connection between one autoimmune disease (Hashimoto's) and possibly another. So when asked about treatment for my Hashi's, I told the truth: that I was on NDT and had been for the past seven years.

On the day I was admitted to hospital, lots of tests were ordered incl blood. A couple of days later, after a spinal fluid tap showed antibodies indicative of autoimmune encephalitis, I was in bed hooked to an IV when a new doctor suddenly appeared at my bedside, introducing himself as "Doctor so and so, endocrinologist". He went on to say that he was there to inform me they had switched my treatment from NDT to Euthyrox 150 mcg daily (this guy had never seen me before nor spoken to the doctor having put me on NDT). Taken aback, I asked why since I was not there to be treated for thyroid disease nor had I expressed a desire to be switched to Euthyrox...he then told me my TSH had come back "extremely low" and that meant that I was hyperthyroid and needed to go back on T4 immediately. The reason they choose 150 mcg was arbitrary, he said, and would only be for the remainder of my hospital stay, and then my endocrinologist would find the right dose for me based on my TSH. When I asked what my FTs were, he said they had not tested them as the TSH alone will show if someone is taking too much, too little, or just the right amount of thyroid hormone.

I think this only made matters worse for me. Everywhere I go, no matter which doctor I see, I have to defend my choice because my suppressed TSH will immediately tell any doctor "I'm not like everyone else" (so no use lying about my thyroid meds because they will expect someone on T4 only to have an in-range TSH or at least not one at <.001). It feels like I keep making excuses for doing something wrong, when in fact all I've done is to make a choice for which I accept full responsibility. I've had a suppressed TSH for over 15 years and I'm still alive, but should it kill me in the future no doctor will be to blame for it. I also accept full responsibility in case of a heart attack, osteoporosis, dementia, and God knows what else they've used to scare me to make me go back on T4 only...but, despite all of that, it still feels like I have to apologise for the choices I've made concerning my own body and well-being...how sick is that, and how many people suffering from other conditions have to do that?!?!

[Hidden in reply to humanbean]

Thanks, HB, that made my day!

[LuluCops in reply to Nathalie70]

Yes it can go up that high that quick! I had nerve root injections a few months ago, before I was given them, my bp was 90/60- as always, even on fludricortisone! Afterwards they wouldn’t let me go home because my bp had spiked to 195/ 145! They managed to get it down to 153/117 but for the life of me it would not come down! After an hour of being monitored, I had enough and asked to go home as I knew being there was doing me ok favours and at home I could monitor it just as easy, as that’s all they were doing anyway.

I’ve had constant monitoring ever since. Although I too was surprised to hear that the OP had been given medication at the first sign of a raised reading. Mine was much higher than that when I saw my GP and the first step in my treatment was to slowly reduce my fludro, then readings of three a day, two at a time, at home then as it was clear it wasn’t coming down of its own accord that’s when they started me on BP meds, and still monitored me before increasing my dose again. I need another dose increase but at the moment I have too much going on medically and at home, so my GP doesn’t want to mess with me too much right now.

[Hidden in reply to LuluCops]

I realise I come off as aggressive or at least defensive to many doctors. It's partly because I know how'll they react with dismay when they see my TSH and hear about me taking NDT, partly because I feel they are not interested in helping me get well, they just want me to do something that makes THEM feel comfortable - that is, taking T4 and having an in-range TSH.

I have gained a lot of weight in the past year and now have a BMI>30 which means obese. However, according to most people I know, I don't look obese because I tend to spread out the body fat evenly (I'm pretty tall, too, 173 cm, which helps...).

Anyway, I'm now back to the weight I had when diagnosed with Hashi's almost 20 years ago. Back then, when I had to weigh myself in front of the endocrinologist my GP referred me to, he said when he saw my actual weight: "oh, I could never have told, you certainly don't look like it".

He probably meant it as a compliment, but to me it was utterly humiliating. Since then, I cannot stand the thought of being weighed by a doctor or any other health care professional for that matter.

The only doctor I feel more or less OK in front of is my hormone doctor, but then again, I went to see her mainly because of my persistent weight problems on T4 mono therapy.

But, to most mainstream doctors, it's so simple. You weigh too much because you eat too much and don't exercise enough. The fact is that, during this summer, I exercised intensively every day - jogging every other day, long, brisk walks on the days I did not go jogging, swimming twice a week plus two to three aerobic sessions a week. The result? At the end of August, I weighed 3 kg MORE than I did back in June. So, exercising did nothing for me - and my insulin and blood glucose levels, in range six months ago, ended up in the pre-diabetic range although especially walking is said to increase insulin sensitivity. So rigorous exercise is not the panacea for weight loss that many doctors seem to think.

[MaisieGray in reply to Nathalie70]

Nathalie70 I have to beg to differ, it can increase to that level and beyond. I once attended the wrong surgery by mistake, for a GP appointment, and had to drive like a maniac to get to the other one in time, and I hate poor timekeeping - apart from which, the computerised log in records you as late and you're forever frowned upon .... When I arrived at the right surgery they took my BP and the systolic reading was 199! On another occasion I was stressed about something and my systolic reading was 187. We should avoid talking in generalised absolutes.

[Hidden in reply to MaisieGray]

I agree! It's like when someone says: "X mcg of T4 is a high dose". There are no absolutes here, we are not robots, we're human beings!

[MaisieGray]

Hidden It may be that you are hypertensive and needs meds, but equally, I think there's a possibility that your Dr jumped the gun in prescribing anti-hypertensives on the basis of a single reading. When I had my first two high readings I was asked to attend for further readings over a fortnight, on the basis of which, a diagnosis would be made. I said no thanks to that, but offered to buy a monitor and take a series of readings at home,which I'd bring in when next seeing a Dr. That was agreed to, and I bought the same Omron monitor as all the GPs in the practice have,and that's what we've done ever since. I understand where you're coming from though, and whilst I'd say there's no sign of a true phobic response in what you describe (I was a clinical therapist), you have developed a sensitised response to several triggers. Very understandably! I'm the same, and it's why I keep as much distance between me and Drs and nurses, as I can. I recently had to attend for a spirometry test carried out by a nurse - a nurse being a serious trigger for me - who immediately said "and would you like to step on the scales first?" Whoosh - instant feeling of anger, tension, frustration, a desire to walk out with a few choice words said, and I said no thanks, I know what my weight is. She then asked to take my BP, and again I declined as I monitor at home .......... She was very clearly unhappy with my recalcitrance. Anyway, I thought that as I needed the test, discretion was required, so I asked her why I needed to be weighed. Of course she went into waffle mode and said it was needed in order to "work out out the calculations". As soon as I was in my car, I googled it and according to the NHS choices page, guess what, there is no mention of weight being required, only age, height and sex; whilst the British Lung Foundation explicitly says "Your BMI is not relevant for predicted values of breathing test results." So whereas I was sensitive about my weight and dismissive of nurses as two separate issues, that experience has inextricably connected the two, so I'll be even more wound up next time lol. I don't in fact, have a problem being weighed just as I don't have a problem having my naked nether regions inspected - if necessary - but I hate being told to do something just because they haven't got the brains to know their job properly, and I very much hate being lied to. So yes, I understand your reaction.

[Hidden in reply to MaisieGray]

Yes, I hate truly hate being weighed in front of or by other people! I always weighed more than the others at school (most of the other girls in my class were pretty skinny and while I was never truly overweight, I was chubby), and then after I developed hypothyroidism things got worse. No doctor seemed to make the connection between hypoT and weight gain, they just told me I needed to "get off the couch" and eat less...without even asking me about my diet or exercise routine.

Today, when my GP went on about diet, exercise and giving up smoking, I said: "I don't smoke, never have". She just looked like me in complete surprise, then said: "Oh, ok, then focus on diet and exercise". So it's like some kind of a robot just saying pre-recorded phrases which may not even apply to the patient in front of her...

[Hidden in reply to MaisieGray]

Hilarious post, BTW, love it:-))

[MissGrace]

We’d all be so much better off in so many ways if the test for TSH didn’t exist. Bloody TSH, I hate it. Too high, too low, in the middle - there is nothing about TSH that helps to make a hypo feel well at all. It’s a medical scandal and a total ball-ache. 🤸🏿‍♀️🥛

[Hidden in reply to MissGrace]

I could not agree more!!! "Tyranny of the TSH" says it all, doesn't it? It's what keeps so many patients undiagnosed or under treated, sometimes for years or even decades. I simply refuse to let it guide my treatment. But that means fighting with ignorant doctors, having to defend my choice, being told I am taking huge risks, etc...to avoid doctors as much as possible, I have started self-diagnosing and -treating in other areas as well.

[Hidden in reply to MissGrace]

The truth is that the tyranny of the TSH pretty much ruined my life the first years I spent on levo. My doctor at the time wanted the TSH around 1.5 so would decrease my meds immediately as soon as it dropped below that. Of course, back then, I did not know what I know now.

Then, I found a doctor who wanted a suppressed TSH in patients with Hashimoto's as he claimed the TSH is what triggers autoimmune attacks (interestingly enough, I recently stumbled upon an article where another doctor stressed the importance of "putting the thyroid to sleep" by using TSH-suppressive doses of thyroxine in Hashi patients). That made me feel much better. Not optimal, but much better. It took 200 mcg of T4 daily to achieve that (previously, I'd never been allowed to take more than 150 mcg. regardless of symptoms). But it wasn't until I was put on a combination drug (first Novothyral, later NDT) that I realised I had never felt optimal on T4 only - just better on TSH suppressive doses vs doses that kept it in range.

[NWA6 in reply to Hidden]

I like the sound of that ‘putting the thyroid to sleep’ maybe some truth in that!

[Hidden in reply to NWA6]

Yes, no use IMHO having the thyroid struggling to make whatever little hormone it's capable of making in a person with hardly any hormone-producing cells left...I find it works best for me to knock out the TSH completely and depend solely on thyroid hormone replacement. I have never understood the argument used by some doctors that it's always better to let your own thyroid gland produce whatever it's capable of making...like that would somehow be superior to the hormones you get from drugs.

[greygoose in reply to Hidden]

How would you know, anyway, what is being made by the thyroid, and what comes from your dose of levo?

[Hidden in reply to greygoose]

True...it's just that I always assumed that if the TSH is suppressed (and that, I assume, is the idea behind the TSH-suppressive doses favoured by some doctors) then the thyroid won't make any hormones even if it has some hormone-producing capacity left...

[greygoose in reply to Hidden]

Yes, that's probably true - but, like all things thyroid, there will be exceptions. I think the thyroid can go on producing hormone even with a suppressed TSH.

[Hidden in reply to greygoose]

TBH, I am no longer sure either...maybe just in my case a suppressed TSH coincided with enough thyroid hormone to make me feel remotely human (as opposed to lower doses of T4 which kept my TSH in range but made me feel lobotomized most of the time)...!

[greygoose in reply to Hidden]

So many complications. Sigh.

[Hidden in reply to greygoose]

Yes, to put it mildly

The TSH has pretty much ruined my life. First, I spent years trying to achieve what doctors considered an ideal TSH (basically, anywhere in range). It did nothing for me. Then, after I went on NDT and finally started to feel normal for the first time in years, I had to start worrying about what doctors other than my hormone doctor would say about my below range TSH...ahead of any doctor's appointment, I can feel my whole body tense, I start looking for arguments to defend my choice to go on NDT rather than stay on T4, and that alone would probably explain why I'm always hypertensive in a doctor's office...I guess it's basically a "fight or flight" response kicking in. That would explain why I am agitated before a doctor's visit and then left drained of energy for the next 24 hours...

[greygoose in reply to Hidden]

Yes, but they're doctors, not policemen. I hate them all, but, they have no authority over you. Become a stroppy cow, like me. I say 'that's my choice, that's what I'm doing, and that's an end to it'. At least NDT is legal where you live. It isn't here!

[Hidden in reply to greygoose]

Yes it's legal...it's just having a suppressed TSH that's illegal

[greygoose in reply to Hidden]

lol Well, not really. But, doctors are there to advise you, not dictate to you. If you don't chose to take their advice, that is your business, not theirs. They cannot force you to do anything. Just let them know you're not going to put up with their nonsense. Twice, when hospitalised, I've said 'if you don't discharge me, I'll discharge myself'. They pretty quickly cave in. But, if you let them walk all over you, they will.

[Hidden in reply to greygoose]

Yes, you're right of course...and, even in the unlikely event a doctor should refuse to continue to treat you, you can always self-treat...

It's interesting that I dread seeing doctors so much, yet know that I know so much more than they do about thyroid disease and treatment...yesterday, when my GP asked me why I do want to take T4, I told her it's because I don't convert it well enough.She then said: "Sorry? What do you mean, convert?" Yes, that shows her ignorance. But also the challenges I'm up against.

But you're right. Those are my choices, I have a right to make them, and no doctor will ever be able to force me to do anything I do not want to do. Well said GG

[greygoose in reply to Hidden]

Good lord! And our lives are in their hands! Really scary.

[Hidden in reply to greygoose]

To say the least...honestly, if it wasn't for the internet and the possibility to educate myself, I am not sure where I'd be today...

[Hidden in reply to greygoose]

Do you know why it is 'illegal'? Is it not available or can one not bring it into the country? I believe it's available in Belgium, which may or may not be near to you depending where you are in France!

[Hidden in reply to Hidden]

As far as I know, NDT is not illegal in the sense that there is a law banning its sale in any country (possibly in Muslim countries since it's porcine). However, NDT is not available in many countries. But doctors can prescribe it and patients can then order it from pharmacies in other EU countries that do carry it. I know many patients get their NDT from Belgium (often their prescribing doctors are in Belgium as well, but a valid prescription issued in one EU country is valid in all other EU countries as well).

T3 drugs are not available in Belgium, but patients who have a prescription for it can order it from Germany. A friend of mine in Belgium takes Novothyral which, for some reason, was pulled from the Belgian market a few years ago, but she simply orders it from a German pharmacy.

[Hidden in reply to Hidden]

In this context, more generally, I wonder if I drug can be banned by one EU country given that market authorisations are granted by the EMA (European Medical Agency)? So I am wondering if the relevant authority in one EU country can ban a given drug that remains legal in other member states? I know for instance that growth hormone is not prescribed as an anti aging drug in many countries (one exception being Belgium), but it's still legal in all countries that I know of to prevent dwarfism in children, so it's not banned as such, only its use for certain purposes.

Cf weight loss drug Reductil (Sibutramin) that was banned in all EU countries by the EMA because of the side effects. It's still available outside the EU (in some weight loss forums people order it from India) but banned in the whole EU.

[greygoose in reply to Hidden]

It is, absolutely, illegal, in every sense of the word. Doctors can be prosecuted for prescribing it, and pharmacists for selling it. It is illegal to bring it into the country. In France.

Human Growth Hormone is also illegal in France. Except for children. Individual countries can still make their own laws, even in the EU.

[Hidden in reply to greygoose]

Wow.

[greygoose in reply to Hidden]

Yes, I know. I wrote a post about it, a while ago. I'll see if I can find it.

[greygoose in reply to Hidden]

healthunlocked.com/thyroidu...

[Hidden in reply to greygoose]

So, on that basis they should have banned levo, not NDT. Hmm.

What sort of penalties?

[greygoose in reply to Hidden]

Oh, I think they were only too happy to ban NDT, been looking for an excuse for years! Big Pharma influence, and all that. No logic to it.

I'm afraid I can't speculate on what sort of penalties, because to my knowledge, it's never happened. People tend to keep quite about it. But, if you try ordering NDT from Thailand, or somewhere, and it gets picked up by customs, it will be confiscated. And, sellers know about this, and most will make an effort to disguise it. When I was taking NDT, one seller I bought from packed the pills in DVD cases. But he disappeared off the face of the earth.

What's more, it's now illegal in France to buy any prescription drug without a prescription. And that goes for levo, too!

[Hidden in reply to greygoose]

Goodness, given all that I'm glad to hear you do well on T3 alone! And yes, I imagine people keep it nice and quiet. I'll make a note not to move to France.

[greygoose in reply to Hidden]

Oh, it has its advantages.

[Hidden in reply to greygoose]

I have always liked France when I visited, quite a few times now. But I also know that I didn't do well on levo or on T3 alone (though to be fair I didn't try a combo) so I want to keep taking my NDT.

[greygoose in reply to Hidden]

Whatever floats your goat - or pig, in your case. I didn't do well on NDT, anyway, so don't miss it. We're all different.

[Hidden in reply to greygoose]

LOL, yes exactly. We're all different. I was probably underdosed (ie treated to a TSH of about 1) on both levo and NDT but found NDT easier to live with in those circumstances. I tried T3 only but it wasn't done properly - straight to top dose.

I'd be open to trying a combo, or to be honest, T3 alone dosed better, but not just now. I can't afford to make myself unwell or destabilise myself just now. Maybe not ever, but there are times in one's life when it is less disastrous to be unwell, and this is not one such time.

[Hidden in reply to Hidden]

Why not just stay on NDT If you feel well on it? I've tried every possible combination of thyroid drugs and NDT suits me best. I find the T3 in it to affect me very differently compared to synthetic T3 (which I self-sourced and combined with T4). When I take synthetic T3, I can feel it kick in within an hour and any amount, even as little as 6.25 mcg (a quarter pill) seems too much for me to handle. With NDT, there is a more subtle rise in my energy levels and the effects last all day long. With T3, I had to multi dose, whereas I can take NDT once a day and feel fine.

[Hidden in reply to Hidden]

I intend to stay on it, as long as I can. But things happen. The musing about changing was just in context of France. Though also a bit about this issue with pig stocks dying (swine flu? not sure) and it got me to wonder about if it would affect NDT supplies.

[Hidden in reply to Hidden]

I sometimes worry about the future of Thai NDT (which I take) as there have been rumours about reformulations and it being discontinued (I know TR has been but now also Thiroyd apparently)? Prescription NDT is terribly expensive and there seem to be no good brands anymore as they are all claimed to have been reformulated somehow and now work less well. So, worst case scenario, I'd give Thyrogold a try. I used to think that porcine thyroid was closer to human chemistry, but I doubt Dr. Lowe would have formulated a product containing bovine thyroid if it was not known to work as well.

[Hidden in reply to greygoose]

I also wonder if, one day, they'll be able to do a better blood test and determine who will do better on which treatment.

[greygoose in reply to Hidden]

Oh, that is very doubtful. Too many variables. And you do have to take the fillers into account. Don't think there's a blood test for those.

[Hidden in reply to greygoose]

No but maybe identifying subtypes etc. Some of us get a goitre, others not, some have hashi, some not... Maybe there's some underlying identifiable factor. Or not, as you say.

[Hidden]

Exactly! I cannot say how much I hate those prescription pads that they seem to reach for like robots...

[Hidden]

Sometimes, I have this vision of thyroid patients with various backgrounds and from several countries coming together to write a book - much like the STTM book but not so much centred on one person or treatment form (the STTM basically has one message: "Take NDT!"), but rather thyroid patients with one thing in common: they have failed to make a full recovery on conventional drugs prescribed based on conventional lab results - frighteningly often the TSH only.

It would be wonderful if several patients could each write a chapter about her fight to get a proper diagnosis and then treatment to get symptom-free. It would be great if we coud read about doctors' condescending and dismissive attitudes, about how many patients spend time and money on private labs and alternative doctors not accepting health insurance just so they can finally get well.

It would be great to read about how thyroid patients may not only require thyroid hormone, but also cortisol for adrenal fatigue (not a recognised diagnosis by most doctors), and bio-identical sex hormones as an alternative to synthetic oral estrogen (known to increase the risk of breast cancer) and progestin (which suppressed our own progesterone production and causes estrogen dominance). It would be great to tell doctors that a woman can be testosterone deficient and benefit from low doses of bio-identical testosterone to counterbalance estrogen. Or that in thyroid patients with persistent weight loss resistance (such as myself), insulin and possibly leptin resistance would need to be treated in order to enable the patient to lose weight. Many mainstream doctors have no idea how our hormones interact.

I could go on and on.

It would be wonderful if we could write about how thyroid disease also causes insulin resistance, raises cholesterol, causes high blood pressure and a host of other symptoms that doctors often ignore or don't connect to our thyroid condition. Instead, they just tend to treat those conditions separately by prescribing more drugs. Some of these drugs are even known to interfere with thyroid hormone absorption...!

Most mainstream doctors are frighteningly ignorant.

I'd love to read about patients who finally recovered on T3 + T4 or NDT or T3 only, so that doctors would hopefully realise that there is no one size fits all when it comes to thyroid disease.

It would be even more wonderful if such a book made it into every doctor's office...!

I know thyroid patients in the US have written books about their thyroid journey (not only Janie Bowthorpe but also people like Elle Russ and Paul Robinson), but why could we not start our own peaceful thyroid revolution here in Europe...??? And, TBH, I'd prefer a book with many patients' different experiences, not just one person's.

just a thought.

[NWA6 in reply to Hidden]

Whole heartedly agree that thyroid conditions contribute to insulin resistance (I’ve had several tests over the years because of my ‘carb comas’)higher cholesterol, higher blood pressure, terrible PMT, emotional disturbances, bordering on rage at times - the inability to control ones moods/tempers.

[NWA6]

YOU ARE NOT ALONE! And your feelings are completely normal and we’re all trying to cope with it in one way or another. Being overweight is not something you will have control over right now. When you are optimally treated you can look at your weight issues. For now buy the clothes that suit your size and make you feel good, make the most of your size, get your hair done, put the make up on, do your nails, whatever you need to do to feel beautiful as you are now.

Don’t be ashamed of being overweight, it is what it is and you don’t need to shame yourself or take it from anyone else either. Whether it’s from self affirmation exercises or getting rid of the mirrors ect find a way to Not focus on your weight. Counselling May help you cope with how you react/ deal with your feeelings and give you confidence to hold your head high and say this is a symptom of a health system that has let you down so very badly!! Remember THAT when you go to the GP. These people have been to medical school for years and they still don’t know their arse from their elbow! It’s a very sad state of affairs that you have to do your own research and you are more knowledgable that’s they. The shame is theirs and theirs alone! You do not have to carry shame around with you. YOU ARE TENACIOUS! You are your best advocate, no one on this green earth will fight for you like you can.

I have been fighting with my GP for 10yrs, the fight continues. It’s like basking my head against a brick wall. It’s made me more ill as we all know that stress is bad for our health. The minute I took charge of my own health and knew that the Dr’s were fallible, I let all the anger/shame/confrontation go. I’m happy now to say, I disagree with you, I don’t accept that diagnosis (ie Fibromyalgia), I will not be taking those medications. And my best retort is, ‘Thank you for the advise I will research that in my own time and see what I think’

I’ve prattled on a bit but I just want to reiterate that YOU ARE NOT ALONE 🤗

[Hidden in reply to NWA6]

So true!!! Doctors tend to blame us for having high BP, cholesterol, being overweight. To them, it's all a lack of will-power causing us to overeat and not exercising enough which then leads to hypertension etc. They seem unable to understand that hormonal imbalances can have life-altering effects on a person's basic metabolic rate as well as whole personality, and that thyroid hormone deficiency will have a knock-on effect on most other hormones as well. I cannot remember how many doctors I've told over the years that "yes, I eat a lot of vegetables and exercise regularly and no, I don't eat pizza every day" to defend myself against their suspicions that I spend my days in front of the TV eating junk food...

One doctor even asked me once if I had ever considered going off thyroid meds one day and see how I felt...so she did not even understand that, except in very few cases, thyroid hormone replacement is life-long. If you can ask a patient with Hashimoto's a question like that, no wonder they believe weight loss is simply a question of eating less and running more...

[MissGrace in reply to Hidden]

I’m fortunate, my GP is like a little barrel on legs. He certainly wouldn’t be in a position to comment on anyone’s weight. I could beat him in a race I’m sure! 🤸🏿‍♀️🥛

[Hidden in reply to MissGrace]

Wow, that must be wonderful! At least then if you are doing something wrong, so must he...!

[Rhsana]

Oh no! That sounds like such a horrible experience especially when it need not be! But yes! I can relate. It is always a stress inducing situation to go to the GP or Endo, it always feels like a fight and if you don’t fight you feel like you have been patronised, I was actually told at my last appointment. “Well at least you are sensible” because I didn’t respond to any of the things that I felt were wrong or untrue. Just so I could get out of there unscathed. I feel your pain and wish it wasn’t so. You are not alone in it though, we are constantly made to feel ‘crazy’ or like we are making it up or not trying hard enough etc. This patient shaming has to stop. I even make my partner come with me sometimes now. Xxx

[Hidden in reply to Rhsana]

Exactly! "Patronised" is the word I was looking for yesterday!!!

Yesterday, my GP asked "Just out of curiosity, why do you not want to take Euthyrox"? Like I was a disobedient child that she could talk some sense into...it's not that I don't WANT to take it, it's because I simply don't convert enough of it to T3. But most doctors have no clue that T4 converts to T3 in the body, that's become painfully clear to me over the years!

[Rhsana in reply to Hidden]

Right! I have actually had a doctor say to me "Well what do I know, I'm just the endocrinologist and you are just the patient." Needless to say, I did actually lose it that time.

[Hidden in reply to Rhsana]

I certainly hope you did!!!

[Batty1]

I so get the "can I get you weight" when I go to GP "No" your not blind right it's clear I'm fat don't need the scale to prove it, they just look at me weird and we proceed to the much loved BP test and explanation why they need my weight (so they can catch issues with weight faster)🤡 hasnt helped in past.

I think if your stressing about stepping on the scale before you even get to your Doctors office your BP test might show higher numbers just because your worked up about getting weighed or explaining that your trying to work on your weight by defending your weight increase.

I definitely understand. I was fit and healthy 3 yrs ago had thyroidectomy for cancer and my weight ballooned to and extra 50lbs and incredible amount of pain from my hips to my toes that has made being active impossible and of course the Endo or GP don't care and see no connection between thyroidectomy and weight gain, it's me I eat giant containers of ice cream everyday and my pains are my immagination (that's just a joke) the whole weight thing irritates me.

I was diagnoised with Psoriatic Arthritis a year ago probably brought on by thyroidectomy and medications, still my weight is my fault.

It doesn't matter you will always be at fault when it comes to weight.

[Hidden in reply to Batty1]

Yes, it's extremely frustrating when you don't feel doctors will listen to you and take you seriously. To them, if you're overweight you eat too much, period.

They seem to think we use hormones as an excuse to overindulge and not exercise.

[Batty1 in reply to Hidden]

Yes, your absolutely correct. Doctors feel that women in particular use menopause and thyroid as and excuse for weight gain "Yes" these 2 things do actually contribute to weight gain.

I wonder if men have same issues with guilty over weight gain and doctors who blame them for it?

Here is the US men seem to not get as many side looks for weight gain or doctor rants (unless they are super sized) like women do.

[Hidden in reply to Batty1]

I have always believed that if as many men as women or mostly men ended up with thyroid disease, there would be many more treatment options available and doctors more open to them.

Since mostly women get thyroid disease, it's considered less important. "Take a pill a day and then you'll be fine" is the approach of most mainstream doctors.

The endocrinologist who diagnosed me 19 years specialised in diabetes but told me he also treated hypothyroid patients on the side as "Hashimoto's is such an uncomplicated disease and easy to treat". Very few endos seem to specialise in thyroid disease which forces us to self-diagnose and -treat.

I think that societal norms and values make it more of a stigma for women to be overweight. I often see and hear comments like: "Oh, she has such a pretty face, if only she could lose some weight and she'd look much better!" For some reason, I don't hear many such comments about men...their physical attractiveness does not seem to be linked as much to their weight as ours.

[Batty1 in reply to Hidden]

I read while back that alot of test ranges are based on Men. I wonder if this is true?

[Hidden in reply to Batty1]

It would not surprise me one bit... !