I simply wanted to know how you deal with ignorant GPs when it comes to thyroid hormone replacement and unconventional thyroid drugs such as NDT?
I have been on NDT for a few years now and am doing well, no thanks to my Belgian Hertoghe doctor who believes Armour or Erfa is all I need. After neither turned out to work optimally, I turned to Thai NDT and have been on it since. Works great at the fraction of the cost of prescription NDT. I continue to see the hormone doctor to get prescriptions for other hormones, although I am currently weaning off some of them (especially estrogen which I am not sure I ever needed). I am beginning to take an active interest in my health and hormone treatment, and that includes being critical when it comes to overprescribing hormones. I am not interested in anti-ageing therapy, I just want to correct hormonal deficiencies that are a direct result of my hypothyroidism.
On the other hand, there is my GP who is freaking out about my TSH. It has been suppressed for the past 10 or so years (<0.01), and she keeps telling me it's dangerous and I need to get back on T4 only asap...I have been on blood pressure medication for a few years (my BP was 170/120 when put on drugs, now 120/80), and she told me that my hypertension is most likely the result of my hyperthyroid state caused by my suppressed TSH...she now wants me to go to the lab once a month to monitor my TSH until it normalises.
I have no intention of ever going off NDT and back on T4 only drugs. I suffered through hell on T4 only for ten years, so that is not an option. There was a time when I could go on and off NDT pretty effortlessly, and back on T4 only for as long as needed to normalise my TSH before having tests done, but that is no longer the case...
My FT4 levels are normal-low, and my FT3 levels midrange 24 hours after taking NDT (so ca 20% higher the previous day, given the short half-life of T3). I feel great on my current dose of Thyroid-S, no hyper or hypo symptoms whatsoever, but as soon as I decrease or increase it slightly (even by a quarter grain), I start feeling the first signs of being under- or overmedicated. So I guess I finally found the dose that works optimally for me.
I have never been able to maintain a so called normal TSH on any drug containing T3 (years ago, I took synthetic combo drug Novothyral for about a year and ended up with a suppressed TSH as well).
My GP claims that the TSH is all that is needed to decide if you are over-, under- or optimally medicated. She claims measuring FT4 and FT3 levels would be a waste of time and money as they cannot tell us anything the TSH won't...
I know she is wrong, but I need her for other things, such as the occasional sick-leave when I get a strep throat or the flu once or twice a year. Right now, she seems obsessed with my TSH, and intent on "normalising" it...
My question is: those of you who have TSH obsessive GPs like that, how do you deal with them?! How do you make them accept (or at least stop worrying about) your suppressed TSH? Or have you found a way to normalise your TSH before going to the lab without suffering too much from debilitating hypo symptoms...?
Ask what produces TSH? (Pituitary of course) and what produces t3 and t4 ? Answer a healthy thyroid. So how can TSH test tell you how your thyroid or thyroid medication is doing. The test that NHS is least likely to do is T3 and strangely t3 is what every cell in the body needs to function properly!! Of course I am far too logical and ask such awkward questions! Lol
My TSH is usually suppressed as on T3 only. Like yours <0.01 usually suits me better. T4 was hell for me too - I tried doing a 'Yellow Card' to report the adverse affects it had on me - CFS/Fibro/Migraine to name a few. But system would not accept my report....might be because I have been off T4 for 7 years - no Adverse side effects on T3! Which is more dangerous I wonder...NOT!
Think you need to print off as much info backing the fact that the TSH is verging on a useless test...That the FT3 is a more important test as it is the FT3 that our bodies actually use...take as much info to your GP as you can, before your appointment if possible, even email it. But do it nicely stating your reasoning for doing it, perhaps that you just want them to be clear about how you feel health wise and how you feel the TSH is not an adequate sole test. Educate, educate...and hope that they read it.
Basically you need to be sure yourself about what it is you know, and what you want from your GP. And don't be afraid to ask for it. I have a theory that if you ask for something and they refuse, and it turns out you needed it, they are on dodgy ground. You have to be able to argue your case and provide evidence.
I remember telling my GP that after 20yrs on T4, and it failing to improve, that I should be allowed to try something else, I was told there was nothing else. I told him there was T3. He said he couldn't issue t3 . So I said send me to someone who can then.
As was said on an earlier post we have to 'butch up' and be prepared to stand our ground. Do not make it easy for the medics to undermine us. We are often better informed than they are. They are 'General' Practitioners after all.
But their registration is based on regular continual professional development, that means staying up to date on absolutely everything. They can't have it both ways: either they gen up on your problem or they admit they are not able to treat you safely because they don't have to time to do the reading.
Treepie No interest is what they mean. If they were real 'carers' they would spend some time reading up on it. I'm tempted to buy a few books - Dr P's or Dr Lowe's and such and send them personally to GP's as presents!
I'm a staff nurse and, I'd advise your asking for a referral to an endocrinologist consultant. Their expertise and specialism in the subject, frankly, will surpass the GP's - by definition - more general grasp of the subject. A diagnosis/prescription/protocol recommended by this specialist doctor would overrule that of your GP. Indeed, I'd expect the consultant endocrinologist to do the education of your GP for you. Behind the scenes GPs are forever seeking the counsel of consultants with humility and gratitude, recognising their more expansive grasp of the subtleties of a subject.
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Interesting, idea but I thought that endocrinologists were worse than GPs when it comes to the importance of the TSH...? From all the posts I've read about endos (here and elsewhere), very few of them seem to be comfortable with a suppressed TSH, and many seem happy as long as it remains "anywhere in range"...I don't know about other countries but in Belgium, most if not all doctors working with NDT and other natural hormones are GPs, not endos...
You seem unaware that GPs can and do ignore consultant's advice.
Yes they can get in trouble for doing so if the patients ends up in A&E, with a serious injury or dead but it is a risk many take. The reasons are varied but it can simply come down to cost e.g. costs of repeat tests when the patient is discharged back to primary care.
I told my doctor back in 2013/2014 that I no longer wanted her to do any thyroid function testing or prescriptions for my hypothyroidism. When she asked why, I said that I thought that the NHS guidelines for the treatment of hypothyroidism were inadequate and sadistic. I said it quite politely, I wasn't angry, I was just matter-of-fact about it. She looked very startled, but didn't make any comment. We've never discussed the issue since then, until very recently. I'm still uncertain whether I will go ahead with the thyroid function test she has offered. I think I may refuse. But my point really, is that it is my choice, not the doctor's choice.
We had a similar discussion in 2014(ish) about my cholesterol. I've had statins recommended to me twice now, and I refused them both times. My doctor doesn't do cholesterol testing on me any more. What would be the point? I won't take the treatment she offers anyway.
A tsh test was only invented to check free t4 as a short cut to save money.
Anna69 you seem to have your levels of thyroid meds fixed. Since you buy your own why do they monitor them? When you have t3 the majority of us have suppressed tsh levels and there is no scientific evidence it causes harm.
If you get any agro ask them to prove it or explain calmly it's a pituitary gland test anyway.
Thanks My GP, who seems more unknowledgeable than most doctors, seems to see a connection between hypertension and hyperthyroidism (which a suppressed TSH indicates to her, basta). I have no idea why I ended up with hypertension in the first place, but it was first noticed a few years back when I was going through a very stressful period (burnout syndrome). I have been on meds since and my BP is now under control. However, my GP (who is just replacing my regular GP who is on maternity leave) said BP meds should not be taken for too long or they can end up causing kidney damage...which is why she'd prefer me to go off them, but she wants my TSH to normalise first to avoid putting too much stress on my heart...no, I am not kidding, this is what she told me.
Fair enough - I am indeed new to the forum. I would add a note of caution about forums in general though, which is to observe that they are well-known to be disproportionately populated by pejorative responses. Happy people don't seek them out.
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I understand what you mean. One problem with many endocrinologists, as far as I understand, is that they tend to specialise in diabetes, not thyroid disease, which is why they think that all you need to fully recover is enough thyroxine to keep your TSH in range. After all, they have been told in medical school that is what you usually prescribe for hypothyroidism.
I am not trying to discredit what you said, just nuance it a little. I have seen one endocrinologist in my life, and that was 17 years ago, right after being diagnosed with hypothyroidism. My GP at the time wanted the endo to find the cause of my high TSH and low FT4 levels...a simple anti-bodies test took care of that. The endocrinologist then wrote to my GP that he should prescribe enough thyroxine to keep my TSH between 1 and 2, and that most patients require 75-100 mcg daily to achieve that...I guess you could call him better than average as he did want my TSH no higher than 2, and the upper normal limit is 4.5 (at which point many continue to display hypo symptoms).
I am not saying there are no great endocrinologists advocating alternative treatment methods for thyroid disease, just that i have not heard of any...at least not in Europe. Maybe it's different in the US...
Why did you call yourself 'Sanity'? It seems like a strange move to join a forum and immediately make disparaging remarks about forums. Actually I have seen upwards of 10-15 endocrinologist who know sweet f**k all about thyroid and are unapologetic about not knowing the first thing about auto-immunity either. There are patients who do not frequent forums and believe all the same 'medicine is right about everything' agenda that you appear to be providing in the name of "sanity" and years later don't understand why they feel so awful but the doctor says they are fine??! Forums and thyroid campaigners are essential for providing information that doctors would never provide. Do they represent the absolute truth? Of course not, but they don't claim to. They offer discussion and an alternative viewpoint. THAT is essential!!!
If you want a thyroid specialist, the best thing to do is look at the list of named consultant in the hospital dept. Then check them out by name and see what their special interest is. I was initially stupid and sat in the "Diabetic Suite" without realising. Had a few arguments and thyroid RAI d. Moved on and am a happy bunny on supported NDT!!
I got my GP to refer me to a "Thyroid Specialist" Endocrinologist at the BRI.
She only saw Thyroid patients.
Sadly, she was well and truly wedded to the UK Hypothyroidism guidelines. Apparently measuring FT3 is a waste of time as it is not important and the only way that I could continue taking T2 was by me accepting that I understood the 'risks' of taking T3 (which I did, by the way, as the Endo's discharge letter with me confirming the 'risk' enabled my GP to continue prescribing T4 + T3).
So, you cannot rely on a so called "thyroid Specialist" Endocrinologist having a full understanding of Hypothyroidism beyond TSH and T4.
The Endo also suggested that it would be too much of a career risk to to anything other than follow the guidelines (something that my GP confirmed).
The implication is that our doctors have been frightened into keeping their heads down and there is no point in trying to broaden their understanding of Hypothyroidism.
Most people on here help other people who do not get the support from endos and or gps. The vast majority have more knowledge anyway as they have lived through illnesses and done massive research.
The support on here is fantastic and I am not keen on anyone putting the forum down.
My GP too was worried about my low TSH, and knew nothing about NDT. I just said in a knowledgable voice "oh good, the block and replace is working!". (Yes, I know it is not like that but the GP did not!). He nodded sagely, and never mentioned it again!
When I joined in Jan last, I did not post initially, I read through, looking for information to help myself and my son.
It became clearly obvious and, quickly, that, yes, the people on these forums are largely those that are, or have been, unhappy with their treatment. i.e they have not had the help for the system that they should have had.
I realised fairly quickly that there were people on here who had a very good understanding of Hypothyroidism. I realised that there were many people who had gone through or were going through a similar patient to my experiences. I realise that my experience may help others. Other's experiences certainly helped my understanding. I also realised I was among other people who actually knew what it was like to be misunderstood mistreated.
By the way are we told 'not' to indicate any medical expertise?
Most of us on here may, or may not be medics, I'm pretty sure there are people on here from all walks of life, with various levels of intelligence and understanding. We all help each other as we can.
The medical profession should be ashamed of they way they 'care' (not) for some patients.
Members of this and other forums may be 'Unhappy'. Who wouldn't be when they have lived through years and decades of substandard life, coping with increasingly debilitating symptoms and conditions, having it impact on every aspect of life, relationships, employment, social, etc. All because most GP's, and many Endo's cannot understand, and have no interest in understanding, the Thyroid system.
Desperation has led us to research our own condition. I started trying to find information 30+ years ago - it is only really in the last 15 years that information has become so much more available to us. It is a shame that even the 'so called' end's don't seem interested in furthering their understanding.
We often understand what is happening to us better than any GP or Endo. After all WE are the one's experiencing it. Infuriatingly these 'medics' do not want to know. If I had a £ for every time a GP has told me that 'this particular symptom' is not related to my thyroid problem, or that the 'thyroid does not do/affect that'...I would be rich. Instead, lack of understanding and help with this condition left me very ill, and forced me to relinquish my teaching job.
I will add that having stopped T4 some years ago I 'proved' it was the mistreatment of my condition that was causing me most of the 'symptoms'. I wonder about grounds for suing...loss of 'life'!
So yes, many of us are unhappy. This misunderstood condition and ill treatment has left many of us living substandard lives, impacting on our life chances. My 22 year old son, has already had to forfeit a sports scholarship and is several years behind with his education because GP's will test him for everything but what is actually wrong with him...i.e...adrenal/thyroid! Even though we have asked for tests in this area. After all there is family history - but they dod not want to know. Talk about wasting NHS money!!!
His diagnosis was eventually made by a very capable, ex GP...who actually does know his stuff.
Many people on here are on here because the NHS systems let them down. NHS neglect! They are having to self source and self help because their own GP 'WONT'. They are too 'brainwashed' by substandard and limited training. Blinkered. Whilst we all appreciate their time is 'precious' It is no excuse. Our time should have been precious too. Instead lack of care from the caring profession destroyed most of our lives.
I sound bitter, I know, ranting like this, but if you had lived my life for the last 35+ years, being made to feel like you were a lazy couch potato, depressive, hypochondriac and now intimations of 'Munchausens' as I try to help my son...you might understand better. But actually I'm not 'bitter. I'm not depressed or hypochondriac or Munchausens.... But I am frustrated that, despite the knowledge out there, GP's/Endo's choose to not know, and that attitudes to, and treatment of thyroid conditions, is worsening by the day.
As a staff nurse, are you aware that many of us now face the worry of the only medication working for us is likely to be withdrawn from prescription? Medication - I'm talking about T3/Liothyronine, the 'active' hormone that those of us unable to convert the T4 - inactive (pro) hormone, need. A hormone that has proved beneficial to so many of us, giving life back to u, those of us lucky to still be prescribed it, or those who are self helping. But the NHS does not want to know or acknowledge this benefit...choosing to ignore it and commit us all back to a life of illness and premature death. Bear in mind that Hypothyroidism is on the 'Free Prescription' list because mistreated or not treated (as in many cases) it can lead to developing heart problems and diabetes and other conditions.
As a nurse would you agree that a single medication would suit and work for all? That is what we are told. All we need is T4. Really. Many of us have proved this not to be the case. Common sense should tell the GP/Endo that.
I have been on T3 only for 7 years plus, My health has improved massively. Unlike the previous 30+ years without treatment -despite seeing a so called 'specialist at the age of 19. (There was something there wasn't over 2 years - so obviously there was something...intermittently at least - the nature of Hashimoto's!! but this was ignored for a further 10 years.) And seeing another 10 years ago -who initially was quite helpful but eventually started treating the 'blood test' not me.
If you had read through some of the experiences that people on this forum have endured through Endo's and GP's you would have understand why they, and I, are on this forum to start with.
So 'Staff Nurse' 'sanity' 'hidden' whoever you are....you are right that 'happy people don't seek them...' (forums)...'out.' If we had received the treatment we are all entitled to, to help us to better health we would not have any need for any forums.
And actually we are not 'unhappy' people. We are just people with a misunderstood an mistreated condition seeking to find better health that the NHS and often private Endo's cannot supply.
So before you judge people on Forums and 'label' us again...ask what failings has made forums necessary.
Apparently, frustration is a symptom of depression - at least that's what my docs always used to say when I refused ADs and told them I wasn't depressed, just frustrated lol
Hi , I am really interested in your comment . I have recently been to the dr who tested my thyroid levels , t4 =13.7 and TSH = 0.01. he says I am over medicated . I have been taking ndt for about 15 yrs , it is the only thing that helped me feel/get better. I do not want to lower my dose ,is there a way I can alter the next test result , for example not to take my meds on the day of the test ( this last one I didnt as I didnt know I was going to be tested ), would this help ? Also could you explain why the tsh is always suppressed when correctly medicated , ? I cld then relay this info to the dr, who I think has never heard of ndt !
NDT contains T3 so tells the Pituitary there is adequate thyroid hormone in the body - and so the Pituitary has no need to pump out the TSH to stimulate the Thyroid to produce T4. Also T4 is usually lower in range - a storage hormone.
All I can tell you (not knowing the reference ranges for your lab) is that I freaked out last summer when my FT4 levels came back low (0.8; ref 0.7-1.5), so I immediately raised my daily dose of NDT. Two months later, my FT3 levels were through the roof (although my FT4 levels were only midrange) but, more importantly: I did not feel better. Quite the contrary. This taught me that FT4 levels are less important when on either synthetic combo drugs or NDT, as we are getting a lot of direct T3 that would otherwise have to come from converted T4...provided we can convert T4 to T3.
So, my advice would be: completely ignore your TSH reading, pay little attention to your FT4 levels as long as you feel well on NDT, and don't pay too much attention to your FT3 levels either. Why am I saying this? Because some seem to think your FT3 levels should be "optimal" when on NDT = top of range. That may work for some. However, I always go to the lab 24 hours after taking NDT (I only take it once a day, in the morning as that works as well for me as multi dosing which I personally find a hassle). Last time I went to the lab, my FT3 levels were 2.9 (ref 1.7-3.7). That may seem low or suboptimal to some...however, since I had not taken any NDT in 24 hours before going to the lab, I can count on FT3 levels to be +/- 20% higher the next day, so about 3.48. It seems that's where I need my FT3 levels to be on the day I take NDT in order to feel fine and rid myself of all symptoms. If I take less NDT, I tend to feel more tired. If I take more, I feel slightly wired. And I found MY optimal dose (which is not the same as yours or anyone else's optimal dose) through trial and error and, more importantly, by completely ignoring my labs because they often did not correspond with what my body was telling me.
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My GP, who seems more unknowledgeable than most doctors, seems to see a connection between hypertension and hyperthyroidism (which a suppressed TSH indicates to her, basta). I have no idea why I ended up with hypertension in the first place, but it was first noticed a few years back when I was going through a very stressful period (burnout syndrome). I have been on meds since and my BP is now under control. However, my GP (who is just replacing my regular GP who is on maternity leave) said BP meds should not be taken for too long or they can end up causing kidney damage...which is why she'd prefer me to go off them, but she wants my TSH to normalise first to avoid putting too much stress on my heart...no, I am not kidding, this is what she told me.
How do you deal with GP's?
how to speak to your GP about very low TSH
What do you say to doctors who freak out about a suppressed TSH...?
GP review - low TSH on NDT
Why the obsession with TSH?
