Do you ever lie to your doctor(s)?

I know you are supposed to be completely honest with your doctor and all that.

But, in all those years I've been on thyroid hormone replacement (20 years), I have found that to be rather problematic.

I have never felt optimal on any dose of T4 that kept my TSH in range. Even before knowing as much as I do today, I used to raise my T4 dose on my own every time I felt slightly undermedicated. When I finally ended up on a dose that made me functional, my TSH had dropped to 0.05. That was in 2001. And it has been suppressed ever since (dropped to <0.01 on NDT).

Now, I know that is not a problem especially when on anything containing T3, but most doctors don't and freak out. Unfortunately, even though I tell them I see a specialist abroad they won't leave it at that, but start interfering, ordering labs, and then tell me I need to go back on levo only until my TSH normalises. Most never even test the FTs.

My current GP is driving me crazy. I see a connection between highish cortisol (following high dose steroid treatment), a rise in insulin and blood sugar levels, and a sudden rise in my triglyceride levels (from 75 to 150 in six months). But she keeps telling me she thinks it's related to my suppressed TSH and now wants to refer me to an endocrinologist, the treatment goal being to normalise my TSH. There is no way in h--- I am ever going back to a conventional endo...the one I was sent to back when I was originally diagnosed in 2000 said that "no patient ever needs more than 100 mcg of levo daily"...I doubt he was exceptional, but rather that most endos are like that. They don't treat our symptoms, they treat our TSH.

My GP also thinks my TSH could be responsible for my recently diagnosed hypertension (170/92, for which she put me on meds) and that is another reason she wants my TSH to normalise. She speaks as though an endo could just make that miraculously happen...but my TSH has been below 0 for almost 20 years, so may never normalise even if I took low doses of levo only for the rest of my life and had below range FTs...!

So, I will now have to find a new GP. But, the problem is, every time I tell a new doctor I am on thyroid hormone replacement, s/he will invariably request labs, then freak out because my TSH is low, and then start interfering...I just cannot stand that. I have spent so much time discussing this with useless doctors, spent so much money on useless tests (as my TSH will always come back out of range), and am just fed up with it.

So I have been thinking...maybe I should not mention my thyroid at all to a new doctor? How big a risk/chance is that that s/he will request thyroid labs if I don't mention I'm on thyroid hormone replacement? Of course, if I don't mention it, and the doctor then orders labs anyway, I'd look stupid...and keeping something like that from a doctor would look suspicious. But I just don't want another doctor interfering and messing with my treatment...!

I realise this may sound ridiculous, but this is turning into a real problem for me. I am simply so tired of having to explain to ignorant doctors that I cannot take a dose of levo that keeps my TSH in range and be fully functional at the same time...something they cannot understand. If on levo only, I need my FT4 levels high in range (at the very top or slightly above) to have enough T3, and that will cause my TSH to drop below range. The last time I had a normal TSH back in 2001 (on 150 mcg of levo), my FT3 levels came back at the bottom of range and my FT4 levels were only midrange. My TSH simply does not tell me anything about my thyroid status, and has never correlated with my wellbeing, whereas most doctors think it's the only thing that matters.

How do those of you on T3/NDT (or with a low TSH on levo only) deal with ignorant doctors who want to interfere and force you to go back on levo or lower your levo dose?

[humanbean]

Are you from the UK? If you are you can refuse to have any test or treatment your doctor suggests, your doctor can't force you to have treatment or a particular test. If you are supplying your own thyroid hormones why should you get thyroid function tests done that your doctor insists on?

If you are from the US then I would guess you don't have as much freedom to refuse treatment or testing if you have to keep your insurance company sweet, but I don't really know anything much about US healthcare and am not sure of my facts.

[Hidden in reply to humanbean]

No, I live in Luxembourg. My thyroid (hormone) specialist is in Belgium.

I know nobody can force me to have tests or switch treatment, but the problem is that as soon as I mention having Hashimoto's, and taking non-conventional treatment (or when they ask for and see my latest labs with the suppressed TSH), most doctors want me to go back on levo and normalise my TSH. They don't bother to ask why I switched to NDT, nor care about my FTs. I have tried to tell so many doctors that I have this specialist in Belgium and that they don't have to get involved, but it's like a suppressed TSH is like a red flag to a bull to most doctors...they simply just cannot let go.

The irony of it all is that I go to this private practice with several doctors from different countries. I asked for a UK doctor as I assumed they would be pragmatic and not so keen on ordering tests as many doctors from southern Europe (I have had enough tests to last me a lifetime), but she turned out to be the worst of them all...not only does she want to send me to an endocrinologist, but also to a cardiologist (for my BP), and a dietician (to help lower my triglycerides). Are all UK doctors like that...???

[humanbean in reply to Hidden]

There are two things I refuse to have tested or discuss with my doctor - that is my thyroid and my cholesterol. I do get them tested, but they are private tests done at my own expense for my use alone. I never show them to a doctor.

Could you do the same thing?

I haven't had blood tests done by my GP since 2015, and referrals to anybody are scarce in my experience. Whether this is because my doctors don't like me or whether this is common to all my surgery's patients I have no idea!

[Hidden in reply to humanbean]

Yes, if I don't find another doctor, that's what I'll have to do...that is, tell her that my thyroid is off limits (and it would probably be a good idea to include cholesterol as well).

I have extensive testing in Belgium every year, prescribed by my doctor there (trained by Thierry Hertoghe). I could have them where I live, but prefer to cross the border in order to avoid my results showing up in any database in Luxembourg. That is also the reason I always buy meds prescribed by my doctor in Belgium (HRT, DHEA, in the past Medrol for adrenal fatigue) in Belgium...to avoid leaving a trace. I know it sounds paranoid, but adrenal fatigue is not a recognised condition by most doctors and the very idea of taking Medrol for a condition like that would freak them out. Belgium seems very liberal in many ways...for instance, human growth hormone is prescribed as an anti-aging drug there, whereas it's prohibited for that use in neighbouring countries.

If I have so far provided my GP with a copy of my results, it was so that she would not order new ones. But that backfired in the sense that she started to question some of those results and wanted to interfere...

In the past year, I have noticed symptoms such as rapid weight gain in the abdominal area, slightly out of range fasting blood sugar, fasting insulin three times higher than it should be, along with a sudden rise (+50%) in trigylceride levels and a drop in HDL. My GP thinks I eat too much, especially too much fat, and don't exercise enough, and that is why I have gained weight and my triglyceride levels have gone up. However, following advice from people here, I ordered a 24 h saliva test kit which showed my cortisol levels were a bit high throughout the day. That would explain the insulin resistance which in turn would explain the rise in insulin and blood sugar levels which in turn would explain the rise in triglyceride levels. So, I need to work on getting my cortisol levels down without lowering them too much so need to order a new test kit soon...but, to most doctors, it's very simple. Weight gain is always caused by overeating and lack of exercise, period. And I know what a dietician would tell me: eat less, run more. Avoid fat and eat a lot of whole grain bread.

My GP even asked me (when I told I refused to step on the scale): "But would you mind just telling me how much you weigh?" I said yes and she looked surprised...I then told her my weight is off limits and I don't want to discuss it. But she keeps coming back to it every single time, asking questions like: "Have you been keeping an eye on your weight?" And then she goes on to say that she thinks I'd benefit from seeing a dietician...I doubt very much that dietician would care about hormonal imbalances. It's like when I joined Weight Watchers a few months before I was diagnosed with Hashimoto's, and everyone kept losing weight except me who kept gaining weight...I was told I had to be cheating because it's simply impossible NOT to lose weight if you stick to the programme and eat your allotted number of daily points...that was over 20 years ago, but remains a traumatic experience that forever altered the way I feel about scales. I still have nightmares about it. But, if I told my GP that, she'd insist I see a therapist...!

She also insists I have my thyroid antibodies checked every three months. When I asked why, she said: "Why, because you have an inflammation in your thyroid, and it's important to keep an eye on it". I then asked her how she intends to treat that inflammation in case it gets worse (my antibodies rise). She did not know what to reply...just kept saying that you need to keep an eye on the inflammation. Of course, in most other cases, that may be the right thing to do. However, when it comes to Hashimoto's, you don't treat the inflammation (antibodies), just the ensuing hypothyroidism. So, IMHO, testing antibodies all the time is a waste of time and money as it won't change the treatment.

[humanbean in reply to Hidden]

For eating advice I rely on this website :

dietdoctor.com/

For the first time in my life I have actually paid money to join a website, but they do have a substantial amount of content which is free.

I can't say I have lost much weight - the needle on the scales still often goes up - but I do feel better on a high fat low carb diet. I just wish I could overcome my carb addiction - I go on a sugar binge far too often to be very successful at losing weight, and when I do I feel worse than usual a few hours later and it lasts for two or three days. But I have managed to get my triglycerides into range, which is good.

[Hidden in reply to humanbean]

That's another problem in this case....my GP uses the BMI to determine a healthy weight. I'm 173 cm so a healthy BMI means 63-75 kg. But let's say I weigh 70 kg...would she be happy with a BMI anywhere in range, or insist it be close to 63 kg...regardless of muscle mass? Another problem with the BMI is that it applies to everyone who is X number of cm/inches, regardless of age and hormonal status.

I know the website you refer to and also read Dr. Eenfeldt's book a few years ago.

I do have insulin resistance (slightly out of range fasting blood sugar, insulin still technically in range but came back at 18 and should be <5 so still "only" have insulin resistance, not diabetes 2). I have been on Victoza lately, but only see it as a temporary solution. It has had a positive effect on my cravings, but some of the side effects (although rare) scare me, such as pancreatitis. I also believe that insulin resistance is a reversible condition (even diabetes 2 is in some cases), so hope to find a way of eating a balanced diet without drugs, only supplements such as berberine.

After reading a lot about this condition, I know that people with hypothyroidism are at greater risk of developing insulin resistance. It makes sense that if one endocrine gland stops working, it would have a knock-on effect on other hormone-producing glands as well. Also, I probably was T3 deficient for years as no doctor ever tested my FT3 levels while on levo only, and low T3 can make insulin resistance worse.

I also know that low carb does not mean the same to everyone. Some people do eat a lot of butter and bacon and feel great that way, but others prefer fat from olive oil, avocado and stuff like that. Some can eat lots of fat, others only need moderate amounts of fat, and enough protein to stay full, along with non-starchy vegetables.

For some reason, my cravings get worse in the late afternoon and evening, so that is when I tend to overeat.

Many low carb proponents recommend you limit or avoid foods like dairy and nuts as they can trigger cravings. I guess it's the lactose in dairy, and the carbs in nuts, that can be problematic. My own experience is that yoghurt (even Greek yoghurt so high fat) with nuts and fresh berries contains too much sugar for me, doesn't keep me full for very long, and increases cravings later in the day. I grew up being told I needed calcium for my bones, so I have a hard time accepting that dairy may not be optimal for me.

[greygoose in reply to Hidden]

I don't have any answers for you, but I do so understand what you're saying. It's a nightmare! And the reason I never go to see doctors!

[Hidden in reply to greygoose]

That's actually a great idea...everything can be sourced online these days, and it's easy to monitor your BP at home. I also think doctors tend to prescribe drugs a little too hastily, and suspect my high BP is related to the rise in cortisol levels...anyway, doctors can definitely do more harm than good, I know that from first hand experience...I have the feeling this doctor won't give up until she finds something to refer me to a specialist for, and then they'll never let me go...I'd better get out of this before it's too late....!!!

[greygoose in reply to Hidden]

Totally agree with you. On all points.

[m7-cola in reply to greygoose]

So do I!

[Hidden in reply to humanbean]

HB,

Sorry not to remember this, but what do you take for your thyroid condition? Do you have a suppressed TSH? Or what are the reasons you don't discuss these issues with your GP?

[humanbean in reply to Hidden]

At different times I have taken T4, T3 and NDT. Most of the time when treating myself I stick to T3.

There will never be a meeting of minds between me and doctors on many things. My GP wanted my TSH to be well in range, which left me feeling worse than I was without any treatment at all.

And as for my cholesterol I don't believe that high cholesterol is dangerous. See this link :

drmalcolmkendrick.org/2012/...

The graphs show that overall mortality is lower in women the higher their cholesterol is.

And this link is worth reading too :

spacedoc.com/articles/50-fa...

[Hidden in reply to humanbean]

Thanks, interesting!

[Hidden in reply to humanbean]

I read an article recently about a man in France who developed some behavioural problems (aggressiveness), and it was linked to his meds...he was on Lipitor (statin). So I want to avoid that at all cost! My GP hinted it might be necessary if we don't get my triglycerides down, but no way...!

I wished for years that I could just be a "normal" thyroid patient who felt good on a dose of levo that kept my TSH in range. But then I realised the absurdity of it all...how many other diseases are there where the patient is supposed to keep the doctor happy, rather than focus on getting symptom-free...?!

[humanbean in reply to Hidden]

Reducing triglycerides is actually worth doing, as far as I understand it. It doesn't require statins, it requires reducing sugar and carbs, and eating more fat and protein instead.

[Hidden in reply to humanbean]

The problem is my GP wanted to know if I have eaten more fat in the past year, so she obviously has no clue...I'm ditching her, I feel I have wasted enough time on doctors and meds that don't work...!

[Angel_of_the_North in reply to Hidden]

Ignorant GP obviously doesn't know that triglycerides come from sugar/starch - needs to go back to year 1 and 2 metabolism at uni

[Angel_of_the_North in reply to Hidden]

Just say no, "I've eaten the govt recommended 'healthy' diet for the last 20 years". That might give food for thought.

[Angel_of_the_North in reply to Hidden]

UK GPs love to send you for tests, often at a hospital, but very rarely get you any treatment, so you could go to cardio but keep putting off the other appointments until they lose interest in you. Cutting carbs might well reduce triglycerides

[fuchsia-pink]

I'm not sure it would work in practice ... as soon as your notes arrive at the new GP practice, the cat would be out of the bag ...

It is probably better if you can find a GP who is prepared (a) to admit they don't know that much - because they are general practitioners so expertise in something highly specialised isn't expected; and (b) responds well to what you tell them that you learn on this forum - either from other members or from links to research papers etc.

In my case, I (now) get both of these factors by having a (new) young female GP

[Hidden in reply to fuchsia-pink]

Lucky you...half the battle is finding a doctor like that...!

[Cooper27]

Unfortunately I think they'll find out about the thyroid stuff as soon as they see your medical notes.

I'm not averse to withholding from your doctor, but I don't think it's a good idea to outright lie. I think in your case, you might just want to avoid bringing up your thyroid issues, and if they do discuss them, you can say you see a renowned specialist and don't want your doctor to interfere with their treatment plan. If the GP thinks your treatment is causing other issues, then tell them you'll raise their concerns with the specialist.

[Hidden in reply to Cooper27]

I know what you mean...I think it's more a question of making the doctor back off and not interfere with the treatment prescribed by other doctors. I think that is very disrespectful and disloyal to a fellow physician, and wonder if that is common when it comes to other conditions, or if it's just when it's thyroid-related that they feel it's OK to interfere without even suggesting to confer with the prescribing doctor...?

[Cooper27 in reply to Hidden]

I know what you mean. I doubt your GP would interfere if we were talking cancer treatment, for example. Thinking about it, maybe that's how to get them to back off! Maybe try that as your next comeback!

It's possible that they've discovered that many endocrinologists don't have a clue and are used to fixing their mistakes. We'll never know.

[humanbean]

but my TSH has been below 0 for almost 20 years

How can somebody have negative amounts of TSH?

[Hidden in reply to humanbean]

Well, I am not a mathematician, but isn't a TSH of <0.01 negative...or did I get it all wrong??? In that case I'll change it! I meant unmeasurable. I used to see a doctor who prescribed levo only but wanted a TSH between 0.05 and 0 in Hashi patients, which is why I have always assumed <0 was negative...?!?!?

[humanbean in reply to Hidden]

No, a TSH of < 0.01 is not negative, it is just very low.

A negative result would be TSH < 0

I used to see a doctor who prescribed levo only but wanted a TSH between 0.05 and 0 in Hashi patients

I sincerely hope that doctor had no plans to go into medical research.

[greygoose in reply to Hidden]

Shouldn't that be a TSH between 0 and 0.05? Pretty stupid either way, as how can you fine-tune a TSH to that extent?

[Hidden in reply to greygoose]

Yeah, you´ re right, it doesn´t make sense!

[Murphysmum]

I haven’t read all of the above replies so apologies if I’ve missed something but I just wanted to say I feel very similar to you with regard to the insulin resistance.

I’m still holding onto the idea that it might resolve itself (the cravings at least) once I get me doses right.

With regards to the telling doctors the truth thing.. I recently got my annual request through to see my gp regarding my thryroid bloods. Although I’ve been supported and my surgery have agreed to supply my T3 prescription, I have absolutely NO intention of speaking to them about my thyroid ever again!

[Angel_of_the_North]

I almost always lie to GPs - they lie to me, after all. If you are buying your own thyroid hormones, you don't need to agree to any testing or referrals. Just say no.

[Hidden in reply to Angel_of_the_North]

Valid point! I honestly believe you can end up sick from seeing too many doctors and having too many exams...

[Angel20]

I would not lie to the doctors what I would do is say what I want from them, yes they are doctors however do not have my body, assumptions are dangerous so tell the doctor how you feel and what you want to see happen. I have Graves Disease. If they don't play ball, go elsewhere.

[Hillwoman]

I don't think I've ever lied to a doctor. I merely omit to tell them a great deal! I've been lied to by the profession on many occasions however, so it's not a moral choice on my part, just a desire to keep the ignorant, interfering idiots at the furthest distance possible.

[Hidden in reply to Hillwoman]

I couldn't agree more!!! The less doctors interfere, the better, as far as I am concerned. I keep telling my annoying GP that I see a specialist for my thyroid and that she does not need to get involved, and yet she keeps insisting on ordering labs. Why would she need labs if she did not plan to interfere with my treatment...??? They just cannot see a suppressed TSH without interfering.

[TSH110]

I was economic with the truth still getting Levo prescriptions but never using them because I swapped to NDT. I gave up on that pretence. I went 5 years keeping stum until I was caught out by a very observant doc who noticed TSH suppressed and T4 lowish although the lab had said normal, no action needed - much to my surprise. Pity eagle eyes noticed, then she saw I’d not got a prescription for years. I just told her straight I took NDT I had DIO2 gene fir poor conversion of T4 to T3, my TSH was suppressed because the T3 in NDT meant I had enough thyroid hormones already in my blood so there was no need for the pituitary to signal to make any. I was not hyperthyroid - I had suffered it before treatment and knew exactly how unpleasant it was and could assure her I felt perfectly normal. She started the your not taking your medication line, so I said I was well aware that I would die without it and had never missed a single dose. She gave in saying it seemed I knew a lot more about the thyroid and hypothyroidism than she did. She was keen to know how much T4 it equalled I told her it was not really quite like for like but around 125mcg as she’d never heard of a grain! She seemed happy with that as it was more or less the Levo dose I used to take. She was young and reasonably open minded I’d say. I expected to be hauled over the coals with a letter afterwards, but nothing bar being put on a different Docs list (she was a trainee so just saw her by chance) because of numbers/rebalancing lists - I was suspicious but think it was just coincidental. Bit mivved I liked my accorded doc, but can still request her.