Endo help!

Yesterday I went to the 3rd private endo since being diagnosed with under active thyroid, after feeling frustrated (not listening when telling them I still felt unwell) with treatment from the past 2 I had seen over the last 2 years. I had heard this one was not the most sympathetic - thats putting it mildly - he often insults his patients by calling them fat - however was told he was the best endo in the area I live in Portugal so thought it was worth a try.

Unfortunately, my visit was not very successful, when trying to explain that I still felt tired etc and about my high cholesterol he informed me that it was due to what I was eating and that my weight (71 kgs and am 5ft 2inch) is down to eating the wrong foods - I think he said you ´don´t get to that weight with your height from not eating the wrong type of foods´! He did not even ask me about my diet and decided that from looking at me he knows my diet...........

Surely someone who is a medical specialist in this field would know that one of the main and most upsetting symptoms of underactive thyroid is weight gain, high cholesterol (in some) and a whole host of other nasty side effects!

I am now contemplating making an appointment back in the UK with a private endo - would like very much to look at one who looks outside the box a bit and not just give a prescription for Levothyroxine. If anyone has any recommendations in the Bristol area - would you be able to message me please.

50 Replies

  • do you have any blood test results you can post here

    has anyone tested




    vit d3

    because without all of them being HALFWAY in their ranges your body simply cannot make use of the levothyroxine

    far too many doctors and endos pay no attention t that

    can you get Natural Dessicated Thyroid ( pigs or bovine ) in Portugal as for many people that's the way they get well

    no point spending more time and money seeing useless endos if help from us will solve things

  • Hi there - I only have a couple of the results - they did not test for Vitd3 or folate.

    Feritin = 45.92 (range 09-120)

    B12 = 280.20 (range 200-950)

    I have already got a prescription for B12 and I have been taking Vitd3 once a day for about 3 months as I had read up that this would be good to supplement.

    I agree - I really don´t want to waste my time going to endo after endo without really getting much help.

    I did ask him about NDT because I would be interested to try this as it seems to have helped many people on this site. He does not prescribe this as he said it is not reliable - each batch being different so that was a no go straight away.

  • NDT is perfectly reliable and many on here simply internet order and self treat

    however before we go any further your Ferritin is way too low and it will take months of you taking iron plus at least 1000mg of vit C with it to push it up BUT you must take it 4 hours away from any thyroid meds

    your b12 is dreadfully low and you could do with getting folate and d3 checked if you can

    With low levels of any of the 4 important things your body cannot correctly utilise levothyroxine T4 or any T4 containing meds like NDT

    So really need T3 /liothyronine in the meantime

    any chance your going to Crete or Cyprus where you can buy it OTC

  • Hi RFU - when I showed first my GP here and then the endo my latest results they said my B12 was ok - I pushed for a prescription as from reading on this site its recommended to be in the much higher range.

    The same with feritin levels they think those are ok - although my iron serum (badly translated) last results were 144 (range 37-145) and 25.78 (range 6.62-25.96) so I don´t really get this.

    I will continue to take the D3 and I am taking Omega 3 for the high cholesterol and will get some VitC too.

    It wouldn´t be possible to get to Crete or Cyprus.

    Can you get T3 online and how would I know how much to take - I currently take 100mg of Levo.

    Thanks again for your help.

  • Bristol, my sister got ranted at down the telephone by a GP she had never seen telling her to eat less and exercise more. She is hypothyroid (after Graves/RAI) and her cholesterol was a little high so he seemed to assume she is fat and lazy. Her weight has increased by 8 lbs post RAI and she runs 10k every week. The man was rude, offensive and managed to confuse HDL and LDL. Her own GP said her cholesterol is perfect. I think the behaviour is sexist too, can you imagine those doctors talking to their male patients in such a manner.

    Email louise.warvill@thyroiduk.org.uk for a list of private and NHS endos in Bristol recommended by members.

  • Hello Clutter - yes I agree its completely wrong and the main thing I do not understand is that as a specialist he should really understand that weight gain is one of the main side effects. I had really high hopes for this appointment so I now feel completely deflated and can't help feeling worse about my weight.

    Thank you very much for the link - I think this is what I will do as I am not really getting anywhere here - my results are certainly better than when I was first diagnosed, however I still don´t feel right and this is what none of the Endo´s seem to get.

  • Bristol, as RFU said, you could get a lot of help here if you post your thyroid results with lab ref ranges and say what medication you are taking. Getting vits and minerals tested and optimal helps enormously with well being too. Once you are optimally medicated with thyroid replacement and vits/mins it should be possible for you to become well enough to exercise in order to lose some weight. Maybe money would be better spent on a personal trainer than an endo.

  • I am going for new blood tests in the next few weeks - I posted my last ones about a month ago I think.

    I am looking at joining the gym, the main thing has stopped me doing this is tiredness - however I decided I have to jump in and see how it goes. Yes, the money would most likely be better spent at the moment with a PT at the gym than on the Endo I have just wasted money on.

    Thanks again for the advice.

  • Bristol, be warned that exercising can not only make you more hypo - it uses up your T3 - but will not make you lose weight. What is going to make you lose weight is getting your T3 optimised. And it sounds as if you're a long way off that. Can you get your latest blood test results?

    There are two reasons hypos put on weight - one because their metabolism is shot due to low thyroid hormones, and 2) because of a substance called mucin that clings Under the skin and retains water. Exercising is not going to help that! And it has nothing to do with what you eat.

    In fact, dieting can make you put on weight, too. Because you need those calories! Calories are needed for every bodily function - like breathing and digesting - and also for converting the T4 that you are taking into T3. And if calories are in short supply, the first to suffer is conversion, so you get more hypo and put on more weight. So, that is another reason that exercising isn't going to help - it uses up your calories as well as your T3!

    If I were you, I would forget the gym and concentrate on gentle walking and swimming. Until you are optimally medicated, and then go slowly and see how much you can tolerate. But whatever you do, you should never push yourself. Listen to your body and see how much is good for it and how much bad.

    I'm afraid the sad truth is that doctors know next to nothing about thyroid - the reasons for this are complicated - and often endos are worse because, although they should know all about all hormones, they tend to concentrate on diabètes to the detriment of all else. The endo you saw is typical - and although it's disappointing, you shouldn't let it get you down too much, or take it personnally, you can always find help elsewhere. Like here. lol Thyroid-illiterate doctors are an international problem, I'm afraid. You are unlikely to do much better in the UK unless you can see Dr BP. Or, go to Paris and see Dr D, or Brussels to see Dr H. But that is going to cost you a fortune! As others have said, why waste your money. Just know that they are there as a last resort.

    So, onward and upward, eh? lol Take heart, you are not alone.

    Hugs, Grey

  • Thanks Grey - I had read that certain exercise can makes things worse, so will start slowly maybe as you said swimming and walking - I have a promenade just 2 mins from my apartment which I walk a few times a week, so should do a bit more often.

    My last results for T3 was 0.95 (0.50-2.00) - the new Endo has asked for more blood tests in a months time I have to go back.

    I definitely get more support and information from this site than I have from any of the Endo´s / Gp´s etc that I have seen so far!

    Thanks again.

  • Yes, i'm not familier with that range, but it isn't even mid-range, so much too low. Should be nearer the top of the range.

    Do you have your FT4 result? It's from comparing the two that we can see if you're converting or not.

  • Hi Grey - the last T4 results I had at the same time as the T3 is: 8.67 (4.0-13.0).

    I think the ranges are slightly different here from what others have commented previously.

    I am also taking magnesium as one of the endo´s said this could help with energy a bit.

    thanks again :)

  • OK, so your FT4 is just a tad over mid-range, which means that your FT4 is higher in its range than the fT3 in its range. Which means you're not converting very well. In which case, some T3 - either as synthetic Synomel, or natural NDT - would help you a lot.

    Possible reasons for low conversion rates include sub-optimal vitamins and minerals. So upping your level of B12 and iron could also help. But don't forget to take a B supplement with your B12 because they all work together.

    Magnesium is not going to do anything for your energy whilst you are still hypo - that endo really is a dummy! However, it is an essential nutrient and if it's low, that's going to make you feel bad in lots of ways, so good thing to continue supplementing. You could also try a little zinc along with it.

  • Thanks Grey - I have been reading up on T3 and some people get over the internet. I will mention T3 next time I see a doctor to see if I can get it here.

    I mentioned NDT to this endo as I really would like to try it to see how it works for me and he said he does not prescribe this.

    I have prescription for B12 so hopefully will increase this and have some effect on me.

    Thanks again Grey.

  • Good. But don't forget the B complex! Otherwise, the B12 isn't going to work.

  • Ok - will get at the same time. Thanks Grey :)

  • :)

  • Bristol, based on the blood test results you posted in the past, your B12 is low and your thyroxine dose is also inadequate.

    What's with male endocrinologists? It's misogyny. This is a gender biased specialty. Quite probably your diet is not ideal based on your lab test results...... and to be honest with you, mildly hypo will not prevent you from absorbing vitamins and minerals. Only very hypothyroid conditions will super screw up the digestive tract. You are not there although I think maybe an increase to 125mcg T4 would be a better dose than what you are on now. TSH of 1.7 is a bit high for full replacement hypothyroidism. But to just dismiss somebody like how he did you is nasty ass.

    The way I look at things in regards to caloric intake is: if you are not physically active, imagine how much food you'd need to eat if you did nothing at all but lie in a comfy bed all day. That's about 1500 kcal. Add 100 kcal for whatever you are doing. Walking 1 km equals 70 kcal. 1 mile = 100 kcal. Swimming at moderate speed for 1 hour = 700+ kcal.

    Running makes no difference. It's still the same number of kcals except you do it faster. Running a marathon is only something like 2700 kcal. incredible. Right? Yes. The body is super efficient at moving forward on a flat surface. Climbing hills results in huge increases of energy expenditure. Walking up many many flights of stairs every day adds to energy expenditure. Riding a bike is neutral. Too efficient.

    There are sites on the internetz where you can determine your nutrient intake. Cut all sugar and high GI foods. Replace with low GI food. Get nutrient dense foods (fish for example is easy in Portugal) and get rid of the fluffy stuff.

  • Thanks Gabkad - yes it was not a very nice experience and really not sure if I am even going to go back to him once I have the blood tests done.

    I did think my levo should be slightly higher - not sure if I should try a bit extra myself to see how I get on with that - my GP did actually said that could be the problem but Endo did not increase dosage thinking my levels were fine. When I questioned my TSH with the last Endo I was seeing it was very much the results are fine - you are within range.

    I have cut out certain foods from my diet - mostly gluten foods and I have read this could help and am doing juicing, homemade soups (no cream!), quinoa, lentils and loads of vegetables - I don´t eat meat so fish I eat regularly. I don´t drink dairy - almond milk is the milk I drink now after seeing soya would not be great for me.

    Thanks again for the info and advice.

  • If you don't eat meat then at least eat shellfish. That's a big part of coastal diet in Portugal too. Oysters, clams, etc. They will raise your minerals like zinc, copper and iron. All them you need.

  • Thanks Gabkad - will definitely look into my minerals and vitamins as many seem like they are quite low. I eat prawns, salmon + lots of tuna when its in season. I love sushi but not sure I should be eating much of that with the nori wrapping of the sushi rolls.

    Thanks again for your advice :)

  • Nori is not iodine rich. So it's safe. It's not like kelp or dulse.

    I put clams in soup. Shrimp, clams and mussels in a tomato based soup. Even squid.

  • Thanks Gadkad - thats good news, I was thinking I was going to have to give up sushi completely...so really pleased about that. :)

  • I live in Toronto, Canada. Because we have large Portuguese, Italian and Greek communities, every Thursday and Friday night we have air shipments of fresh fish from the Azores and Greece. The Portuguese fish is awesome. So many varieties of fish to choose from. Hoping here that actually living in country means you have access to this too.

    I find that sushi is too rice heavy. At my favourite restaurant (which has now closed) I used to ask them for 'little rice' so the sushi was fish heavy instead. No problem. And I'd mix it up with sashimi as well because that's zero rice.

    One good thing about sushi rice though, they add rice vinegar to it and that lowers its GI. But still, eating less rice is better.

  • Hi Gabkad - we are a small Portuguese island in the middle of the Atlantic - Madeira. So we get a lot of fish, unfortunately not so much in the way of fresh seafood though like they do on the mainland. We get a lot of deep water fish - the one available all the time is scabbard fish (looks like an eel!).

    When we go for sushi we always have lots of sashimi as I am conscious of cutting back on rice and some carbs in general and choosing quinoa as a substitute.

  • Now you got me! I've never cooked one of those but I've seen them for sale here. ...... I checked it out on google and yes, the first hit: Madeira black scabbard fish!

    Good heavens they have lots of teeth! Do they taste good? Probably lots of those tiny bones.

    Yesterday I made Ikra (salted salmon roe/salmon caviar). The fish monger had salmon ovaries for sale. I had no idea when I bought them what to do with them. Thank goodness for YouTube videos. Come on by for some sushi. :) This was my culinary challenge for the week. LOL!

    I watched a Japanese guy make some and today I watched how the Russians do it. Hm, think the Russian technique is probably better: not as salty. But soaking the eggs in water for a few minutes can remove salt if they are too salty. I'm learning....

  • That sounds different - have not seen that before!

    Once the skin is off the scabbard its very soft white fish a bit like sole or plaice - can be fileted really easy so no bones at all on the filets so easy to cook with.

    I agree it looks like something out of a horror film when you see it before its been filleted! :)

  • When you buy sushi, it's those biggish orange fish eggs.

  • I agree the thyroid specialist Dr. John Lowe, who found thyroid tests are only useful if too high and too low and are of no use when it come to proper thyroid hormone replacement.

  • Yes faith63 - I think as my results are not too bad I am not really getting anywhere :(

  • Maybe if you ask, Dr. Nasty will increase your dose by 25 mcg. It's not too much to ask.

  • It's awful when people are treated with total disrespect by dr's (little d!). Absolutely not acceptable. I am beginning to think many consider themselves untouchable if they behave badly.

    I just wanted to say to keep in mind that many (very many) medical professionals in the UK work privately and for the NHS. Often they will simply adhere to NHS policy within their private clinics, meaning no difference between the two.

    Definitely, if travelling all that way, choose a recommended Consultant from recommendation on here.


  • thanks jellynpain - I have emailed for a recommended list of endo´s in the Bristol area so I could go when visiting family.

    I don´t think I am going to get much help here - so its probably worth a go.

    Thanks again for advice.

  • your endo sounds horrible I am too fat but my cholesterol is very low and I do eat healthy obviously too much. I want to lose weight . Before thyroidectomy I could diet and actually lost several stones to normal weight. Got thyroid out and then put on stones now it's not so easy to lose it

  • Hi Throidmeg - yes I don´t think he is known to be sympathetic, he is meant to be the best one so thought I would give it a try.

    I was always around 58 kilos and if I put weight on at any point could always get it off with cutting back on food and exercise - I have been at the weight I am now for about a year or so and am finding it really difficult to shift. Lack of energy of course does not help :(

    Thanks again.

  • Poor you. This is a very common approach in the UK too - insult and try to guilt the patient. They just can't be bothered with the thyroid. Most of them only moonlight on thyroids, their main schtick is Diabetes. Of course they know. It is beyond belief that they continue to get away with this. But they do.

  • Thanks humphrey - I think thats one of the main things here too that they focus very much on Diabetes and if you are within the range they see is ok then job done and go away :(

    Am going to try to get to see a recommended endo from this site which hopefully should work out better than what I have experienced so far.

  • And note one of today's posts regarding how bad Diabetes treatment is too, in the EU. Obviously all these Endos have yet another schtick, of which their patients are all completely unaware ...

  • It is so frustrating humphrey - having to fight to get good treatment - should not be the case :(

  • I know. I was in despair until I found this forum. And reacquired a bit of self-confidence and determination.

    Keep on keeping on!

  • I struggle to understand how endocrinologists do not actually seem to know or accept so many of the symptoms of an underactive thyroid. It makes me so angry that being overweight is seen as automatic overeating and eating the "wrong food", and then the assumption that patients are lying about what they eat if they don't lose weight.

  • Hi BeansMummy - yes, I find it quite unbelievable - after all they are meant to be the experts in their field and we the long suffering patients struggling with this horrible, horrible illness :(

    I am so glad I have this site to come to - it really helps me understand more about the illness and from others how I can help myself, seems the only way forward.

  • :)

  • Same here, Beans. I was sent to a throat surgeon who offered to remove my thyroid for me! But "not for cancer reasons", he said. I asked about fatigue and weight and he said to eat less and exercise more. (arghhhhh!) He said I should go out and purchase a rowing machine as a way to get my weight down. He was looking at me, but I don't know who he saw. I am 72, have had two lower back surgeries and one knee replacement with the other knee to be replaced shortly. I sure need a rowing machine, eh? He gave me a total of nine minutes of his precious time. I was so disappointed. I am seeking now to see an endocrinologist. One who was recommended by Mary Shamom, on About Thyroid. I hope I'll be listened to.

  • A rowing machine? You must look much younger than 72 then, caps43, he was paying you a compliment!

    I was told my severe vitamin D and iron deficiencies were because I had a bad diet - not once did any doctor bother asking me what I ate. I was recommended to eat more Marmite to get my vitamin B12 level up. My fatigue was because I needed to go to bed earlier. My joints apparently ache because I sit badly, goodness knows how they manage to know that.

    Good luck with your next endo appointment.

  • Try The Thyroid Lady. I think her name is Diane Simone. She knows all about docs who just don't listen. She has a video on YouTube.

  • Bristol..i have had to stop seeing the doctors. I cannot handle, mentally and emotionally, the abuse..the way the basically tell me, that whatever i say is going on with my body, is wrong. The endo's say, the thyroid meds get to my cells and whatever is wrong, is not related to low metabolism!!! They are dead wrong. I was thin my entire, life..energetic and fit and i became ill and tired, my food stopped digesting. I gained 30 lbs in 3 months, while barely eating and laying in bed. Before meds, i had more energy, after they put me on t4, i got depressed and tired. I am now self treating with t3 that i buy from Mexico. I am not well, but improving. The doctors have really damaged me emotionally and i would need years of therapy to get over it.

  • Sorry to hear that faith63 - thats shocking treatment :(

    Last year when I went to see my GP I broke down in tears saying I still did not feel well and he gave me antidepressants - I know now that I was under medicated and this is why I felt so bad......

    I know what you mean, I have cut back so much on what I eat and although have always eating healthily and making a lot of different food choices - i.e. cut out bread, gluten etc in the last months.

    I am a lot better than I was last year and can actually manage to do things - but still not ´right´for me.

    Certainly looking at getting T3 as so many on the forum mention this just want to make sure I take the right amount.

    Without this site and all of you helping it would be far, far more difficult to cope with - so thank you for your post it helps a lot.

  • I was eating only tiny amounts of food and i ballooned! There is no way to lose weight when your metabolism is too slow..you even build up fluids of all kinds too. I would eat in moderation. Please research Dr. John Lowe and look at his work on Fibromyalgia. If you feel you must have a doctor, please save yourself more heartache and time and contact Louise on this forum, for a list of recommended doctors in your area. I hope you can help yourself get well.

  • Thank you faith63 - that makes sense, I have not last anything and have really cut down on eating with no difference whatsoever :(

    I have emailed last night for a list of recommended endo´s - Clutter kindly posted the address to email, just waiting for her to email me the list.

    I will have google Dr Lowe and have a look at his work.

    Thanks again for your help :)

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