I had my first ever Endo appt today that left me quite overaught and teary all afternoon. My Gp had assured me that the Endo she had referred me to had an interest in Thyroid, so assumed she would be NDT friendly. No, she wasn't, and she lectured me on how bad NDT was as you can never trust NDT to be a stable, accurate dose with each tablet. She also claimed my 3.5 grain dose was a way too much.
She also basically treated me like I was a gross overeater as i am overweight (I never eat breakfast, rarely eat lunch, and eat a healthy dinner as I have no gallbladder, so no fats). I have Polycystic ovarian syndrome, Hashimotos, Fibromyalgia, Chronic Fatigue, IBS and Migraines but still managed to have lost 6kg (13lb) since September last year, despite having to rest up from 3 operations in the past 4 months (latest operation was only 7 days ago and I still have a belly full of stitches).
She has ordered me to stop NDT immediately, no weaning, and to immediately start on 100mcg of Oroxine, and 20mcg (split in 2 doses a day) of Tertroxine. She also claims no one has a conversion issue as we all had a normally functioning thyroid before Hashis.
She also wants me on Metformin as she says I WILL develops diabetes as all PCOS women do, and to replace all my meals from now on with Optifast shakes. Nothing else ever, apart from water with Benefibre added. She also wants me on blood pressure medicine as it was high in her surgery. No kidding, I had been driven over an hour away from bed rest, 7 days after surgery at her receptionists insistance that i take this appointment, no excuses, and in massive pain, only to have her lecture and scold me. I was feeling shocking and had told her such.
She also claims my vitamin D is low because I am overweight, and has nothing to do with having Hashis as she says malabsorbing vitamins with Hashis is rubbish.
Here are my last 2 blood tests, and proof, she claims that NDT is bad:
The first lot is after trying to catch back up on 10 days of no meds while in hospital as I was refused them.
2nd May 19
TSH: 17 (0.40- 4.00)
FT4: 8 (10-20)
FT3: 2.9 (2.8-6.8)
I was upped from 3 grains NDT to 3.5 grains.
27th May 19
TSH: 0.4 (0.3-3.5)
FT4: 9.3 (9.0-19.0)
FT3: 5.1 (2.6-6.0)
She claims that much of a reduction in TSH in that amount of time was not normal. She also stated that when properly medicated on "real medication" my levels should never waver more than 0.1 or 0.2 points, ever. She claims 0.4 for TSH is almost toxic, and needs to be much higher, as does my FT4. She also says my FT3 at 5.1 is way too high, and a lot of my issues are way too much T3. I do not feel overmedicated. I get night sweats, insomnia, flushing, bouts of being teary and very down, but only since the hysterectomy in Feb. I honestly feel that if I follow her instructions, I am headed for a whole world of hurt. Can anyone please sift through all her demands and give me some sensible advice? I was always warned thyroid med dose changes needed to be gradual, not sudden and this drastic. I am so confused.
Thank you in advance.
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Most of what she says is incorrect. Prescription grade NDT is as good as synthetics. It would be better to eat breakfast and lunch rather than a large evening meal, no breakfast large evening meal is how sumo wrestlers keep up their weight. Having no gallbladder does not affect diet, I can eat plenty of fat although I choose not too.
Conversions issues can come on as a result of Hashi's, the hypothalamic pituitary thyroid axis can become down-regulated leading to subnormal TSH levels and hence reduced deiodinase. Sadly, taking high doses of thyroid hormone does the same. I'm not sure why she prescribed Oroxine instead of normal levothyroxine, from what I see it has to be kept in the refrigerator.
Why would she recommend shakes instead of a healthy diet?
A TSH of 0.4 is fine. TSH does respond quickly, that’s how it works. If TSH took ages to respond it couldn’t control our hormone levels. TSH responds slowly to T4 because the long half-life of T4 means it takes weeks to build up. T3 builds up quickly and so TSH responds quickly. This is why L-T3 is used prior to TRH stimulation tests.
I’ve never heard of vitamin D being low in overweight people. If this were so I think it would be common knowledge.
You say you are confused - I don’t think you are as confused as this ‘endocrinologist’.
Thanks for replying. I have no idea why she chose Oroxine, but i have always felt ill if i eat in the mornings, and am often too busy to eat lunch. It is a bad habit, i know, but i think she just assumed i am lying about how little i eat, so wanted me on shakes.
I think you would feel better if you ate more. I used to feel sick if I ate breakfast, but I've trained myself to eat it now. I still don't enjoy breakfast but when I eat it I feel better later in the day than I do when I go without.
I also think you should eat fats despite your lack of a gallbladder - build up the quantity gradually if necessary. It was probably eating low-fat that made it necessary for you to lose your gallbladder in the first place.
Every cell in your body needs fat to make and repair cell membranes and fat is a huge component of the brain.
The type of fats you should eat are those that people have eaten for centuries, not the ones that are created in a laboratory. For a list of healthy fats and oils see this link :
I have struggled with my weight all my life. I've actually found that trying to cut down on my food makes me fatter. When I eat more, as long as it isn't sugar and lots of carbohydrates that I'm eating my weight remains stable or I lose some.
You should have a browse around this website which extols the virtues of a ketogenic or a Low Carb, High Fat diet :
If she believes no-one has a conversion issue why is she giving you T3 (tertroxine) as well as Oroxine (Levo)? If she believes what she says then she'd give you Levo only and according to her you would convert it well enough to T3 yourself.
Can you trust this endo's advice. Simple answer - no.
I had told her I was originally started on Levi back in 2013, but was still quite ill on it, so would not go back on T4 alone. This was after her rant about NDT. She then said I could have a small boost of T3, but she thinks I was on a massively excessive dose that was not needed before. The longer she spoke, the more warning bells were ringing in my mind, so thank you for validating my concerns. I honestly think my regular GP is far more clued in to thyroid treatments and she doesn't charge $370 A visit, either!
It's interesting regarding the high cost, when I was living in France until recently the cost to visit and Endo was around 17 euros, but she was still useless. I try to live a stress free life so I would never visit one again.
Having an 'interest' in thyroid is not the same as having a specialism in thyroid. Many diabetic and ENT specialists have an 'interest' in thyroid which means they know diddly squat. If you Google the Endo you will find what their specialism is.
I'm so sorry this has happened to you. I have had similar appointments where everything was blamed on weight or depression, and it just leaves you feeling so low and patronised. I'm not very good and suggestions with regards to treatment etc, but wanted to show support having been there myself x
Wow I would be telling that endo to get lost! The only thing I would add to what has already been said is having all these recent major surgeries your T3 will be naturally low. Your body produced reverse T3 to slow you down it's your body's natural defence don't go out of your way to over ride your safety valve. It's there for a reason. Give yourself time to heal and your thyroid function will stabilise. Having hashimotos won't help but if I was you continue on your NDT. All these other meds will give you diabetes especially meds for high blood pressure. Your results on may 27 look fine. I would just carry on especially if you feel well. You will be recovering from your surgeries. Don't let the NHS bully you.
Hi I have no gallbladder and sometimes eat fat. I have a good healthy breakfast, lunch and small dinner and I am never overweight. I also take NDT with no thyroid and I feel great at 72 years of age. I never visit the GP or Endo regarding thyroid medication but treat myself with two grains every day it works fine and my TSH is around 0.005 low. I too had very low vitamin D, in fact when they removed my gallbladder it was full of calcium stones and I had never been overweight in my life. I only found out about low levels after I joined this site.
It is wrong to suggest that you have drinks instead of good healthy food too.
You have been through the mill with all of your operations. Take time for yourself and try to forget about the Endo.
I am so sorry you had this experience. I think this doctor is fatphobic and idiotic and that she could make you very ill.
A new endo saying no-one needs T3 and trying to get me off it made me terribly ill this year. I sat in her office and cried and she said to "be patient". Meanwhile I was gaining a kilo a week, puffy and bloated, brain fog, dizzy all the time, feeling worse than I had in years. I got on this forum, finally got a grasp on what T3 and T4 actually are, and sloooooowly reversed her advice, til I was on 10 mikrograms more T3 than I had been before. Now I feel totally, perfectly fine for the first time in decades. I fired the fatphobic endo and am seeing a new endo on June 23rd; if she says "T3 is bad" I will stand up and walk out of her office. And if she body-shames me or criticizes my food choices like the last one, same.
I am really terribly sorry you had this experience. Doctors are so incredibly inconsistent - if plumbers were as unreliable at their jobs as doctors, we would all be living in a foot of sewage. I hope you can get support on the forum and trust your own instincts and your own body, and that you can rest and recover!
I had a not dissimilar reaction from my first Endo. He stretched out his arms over the file on his desk and said, very calmly, "You have ME." I responded "I no more have ME than YOU do - and YOU KNOW IT." Whereupon I got up and walked out. The Clinic Sister who had been in there for my appointment gushed "You were WONDERFUL. This happens all the time and the poor patients are left without anything." How well I know all this. It took me 18 years to get a diagnosis or treatment, despite being a nurse, having a mother who was a nurse and a medical professor father - sadly deceased when I needed him! - One of five children, we had a great grandmother who was not only severely hyperthyroid but went on to be the first person to be treated with insulin in the fullness of time. My mother was hyperthyroid, I was too, prior to the birth of my first child, who went on to have considerable thyroid difficulties. My second child, a son, also became hypothyroid and COULD GET NO HELP.
DON'T talk to me about getting treated for a condition staring you in the face. After Yuppy Flu my thyroid was totally wiped out. Ceased to function and suddenly HYPOTHYROIDISM
was writ large. Despite having all the Hypo signs staring everyone in the face, with me
barely functioning and my Family History SHOUTING at everyone ………………. it took 18 years for my then GP to even acknowledge my situation. - OR - come to that, my Endo.
That is how bad it is for SO MANY PEOPLE. This is a FACT and no matter how hard I have campaigned, these poor people carry on NOT being recognised. This is thyroid medicine from a patient's point of view.…………………………………………..
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