I posted a little while ago about my endo telling me to stop my Levo prior to my 1st appointment with him. I wrote back saying that I was very reluctant to do that as I have very high antibodies (1100 at the last count) plus I had just recently started to feel a bit better and would that be OK.
He wrote back telling me that no, it would not be OK and that he couldn't help me while I had Thyroxine in my system.
I wrote back yet again telling him (very politely) that though I had seen some improvement in some symptoms others were still troubling me, in particular the fact that after trying Slimming World (twice) the 5:2 diet, cutting carbs etc etc it is virtually impossible for me to lose weight. I wasn't holding out much hope but imagine my shock today when I had a letter from this bozo's secretary saying my appointment had been cancelled - at my request!! I am relieved in a way as I really was dreading it, but more than that, I am FURIOUS!!! What a £$%^&*" cheek!!
Is there anything I can do about this? I want to write another letter, dripping with sarcasm, implying all he appears to understand is how to give (and take away!) Levo and that if he needed help understanding the concept of other types of thyroid medication he only needs to ask me. Would this go down on my records? I don't want future GPs etc to get the wrong impression
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infomaniac
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Honestly, I wouldn't bother. You need a new endo that will listen to what you have to say and actually help you with this issue.
As for what is happening with your antibodies, I would be thinking about changing your diet to try to tackle them. Most GPs and Endos in general don't want to even try this way but if you can drop those antibodies you slow down or stop the damage to your thyroid. Gluten free diets and soya free help and sometimes you have to cut out dairy too. If you can try this you may see some reduction in that high reading. I would also stay with synthetic T4 and maybe look to getting some T3 in the mix too. You would need full and comprehensive blood tests to see how to pursue it properly.
Just as a side note, I have done the diet route so far and I've dropped a dress size (as far as I can tell I've lost just over a stone in weight) in just over a month. I'm not on any medication yet as we need to tackle my deficiencies first. You'll immediately lose any bloating from eating gluten if that is your problem. Dieting by cutting calories often doesn't help the thyroid. It slows down your metabolism and makes it virtually impossible to lose weight. Your body also goes into starvation mode and anything you put into it gets stored. You are better off eating more!
When I went on the Atkins diet I lost a stone in 6 weeks and felt great. The weight fell off and I also dropped a dress size. Sadly I came off it after that and tried to keep the weight off but it didn't happen. So I think the Atkins is looming up for me again.
My TPO antibody count is almost at zero after going gluten and lacto free. (I use arla lactofree milk, cheese, butter etc) I had asked my GP for an antibody test last November after feeling even more ill than usual. When the positive result came back I wasn't offered any treatment. The GP had contacted the endo for advice!!! They don't accept that antibodies make any difference to the course of the illness. So I went DIY and read as much as I could and took note of what others did on this site. I arranged my own private test 6 months late which showed my TPO was almost zero. I have been taking B12 and VIt D as both levels were low and also selenium which is very important for converting T4 to T3. I am now looking at improving my shockingly low Iodine levels and hope that is the last piece of my health jigsaw.
There is not point wasting time and energy on writing to those who do not want to learn, who do not want to come off the "tram lines" for fear they may learn something new. It is a miracle when you find someone who thinks outside the box. Keep reading, learning and posting on here. You will be successful.
Am not sure if you have already tried this route, but vit D is available in the NHS - you should not have to buy it. In the past, I had a good doctor who did a parathyroid test for me and discovered that my vit D was non existent. I have calceos, (vit D3 and calcium combined). My body does not produce vit D. When, I was diagnosed hypo, the GP never even did an antibodies test. Have only recently discovered this, as requested my notes. With my current practise, I requested an antibodies test and they still didn't do it. Current practise, TSH types only, so now I just self medicate and have ditched my endo, for a referral to pastures new, and hopefully will have a better one in the near to not too distant future.
Thanks pinkgirl, I just couldn't be bothered with the hassle of getting Vit D on NHS. It takes 3 weeks to get an appointment with GP here in Yorkshire. I buy all my own Vits, then at least I know what I am having. I think they only did TPO test because I clearly wasn't well and GP didn't know why! The follow up test after going GF was another private test I paid for. I know that I am very lucky that I can afford to pay. I get very angry on behalf of people on here who have to rely on the NHS and get nothing.
I have been reading David Brownstein, Iodine why your body needs it. It is especially important to be careful with Iodine if you have /had antibodies. I have read the book twice to be sure that I understand how to raise my levels. Iodine isn't just important for the thyroid but a number of research papers show that it is very important for breast health, which is of particular concern to me because of past medical history of cysts. I know that a number of people on here express concern about Iodine, but equally there are those who have been successful with the protocol, so watch this space, I will report back.
Hi crimple, I will be interested to read how you get on. From the reading I have done (and my very limited understanding/knowledge) iodine seems to be most successful if all of the other issues have been resolved/healed first... which seems to be your approach.
Absolutely right. My Vitamin and mineral levels are where they should be, top of the ranges. I have got rid of the antibodies and am sticking with the gluten and lacto free diet.
( before I was diagnosed hypo I was intolerant to various foods including wheat, eggs and soya.) We have now bought a breadmaker and hubby is ace at making me GF bread using chia seeds instead of egg. Nearly all commercial GF bread has eggs. I never was one for sauces, so even eating out isn't too problematic, restaurants are beginning to understand they need to know what is in their food! (I think from December all restaurants have to list allergens, about 20 of them, in their menus.) I have now bought Celtic sea salt and B2 and B3 vits. The next bit is a couple of weeks drinking water with the sea salt added, as per directions in the book, and taking the B Vits as per directions. This will hopefully flush out the halides, in my case in particular I need to flush out Mercury. Assuming that all goes well I will start the Iodine protocol as per the book and after 3 months will get my urine retested for Iodine levels (private Genova test) to see how I am doing. I shall report back.
I shall be most interested in your progress. It's amazing how much of a difference to our well-being can come from making changes in our nutrition. I never have IBS now I've given up wheat. What do you use for breadmaking instead of wheat?
Orgran do a bread mix, also Amisa seeded bread mix and Glebe farm have mixes for oatcakes, carrot cake, scones (I add bananas instead of eggs ) Doves farm flours are good too.To be honest I have left it all to hubby, it's his new hobby! The chia seeds provide roughage but also help if you don't use eggs and I think can replace yeast too. It is all a bit of an experiment but haven't thrown anything out. All are lovely when first baked but after that you have to toast it. I slice and then freeze the loaves, but I took some with me on a 5 day trip abroad and kept it in the hotel room fridge and it was fine. A bit stale if I couldn't toast it but made sure I put something on it or dunked it in soup!
It can be difficult to walk past in store bakeries but I just remind myself how much better I feel!
Thanks for this - I will experiment! I've been finding my bakes fall apart and crumble without the glutin I suppose... I guess the stickyness of bananas helps gel things. I used to love fresh bread and still miss it - but like you, I remind myself how much better I feel. Many thanks xxx
Hi infomaniac, I agree with the others - don't bother any more with this endo... I hope you're feeling better about it today.
What a shock though, and disappointing as we always hope that they will listen, have answers and be supportive/respectful of our concerns.
I also agree with the others about looking at your diet - I have very low antibodies but don't know if this is because my thyroid issues aren't autoimmune related or because all my adult life I've eaten loads of veg/fruit/home cooked and very few commercial products with additives/sugar. Since I became hypothyroid I've also cut out soya/wheat and feel even better. I still have dairy as this doesn't effect me but I know a lot of people who can't have dairy... we are all so individual!
My hypo symptoms are also improved/erradicated with the addition of a tiny dose of T3 each day. Good luck finding what works for you. liza
I think we should enter a new word into Wikipedia which Clutter invented 'Endonob' = a Professional Endocrinologist who ignores the patients' worries and treats the patient with arrogance instead of an optimum dose of medication.
You have got off lightly I think and post a new question asking if someone can recommend an Endocrinologist in your area by Private Message, or email louise.warvill@thyroiduk.org who may have someone. Also tell Louise the name of the person you saw as I don't think he has the necessary qualifications, i.e. compassion.
Couldn't agree with you more shaws. The name endonob always brings a smile to my face. Time some were brought down a peg or two. I read yesterday that GPs are noticing their patients are researching their health issues on the internet and then coming to the surgery with their diagnosis and a list of what they want. You would think they would be pleased that we have saved them some time and effort. I'm past even bothering with that- for now. Just keep repeating my prescription and hope that a lot will have changed health wise before my next medication review is due in March.
Get copies of your blood test results with the ranges if you haven't already done so and post them for comments. The phrase 'normal range' is really a 'reference range' which should include the clinical symptoms but they pronounce the patient 'normal' due to the statement on the blood test and prescribe anything but a proper dose of thyroid hormones.
If you haven't already had a vitamin B12, Vit D, iron, ferritin and folate test ask for these to be done. We are usually deficient.
Hi Shaws, my latest results are as follows: (March 2014)
TSH 0.33 (0.4-4)
free T4 17.8 (9-25)
free T3 3.7 (2.8 - 7.5)
TPO 1170 (0.01- 34)
I've had B12 etc done last year and they were all allegedly normal. I take D3 supplements and a weekly B12 (any more than that and I get zits!) My iron levels were actually too high last year but then miraculously went down again.
I don't feel too bad at the moment as certain vile symptoms have settled down (I don't want to say too much in case I put the hex on myself and it comes back!) but am desperate to lose weight and sort my hair out.
Shaws, I wish I could take credit for 'endonob' but I nicked it off Facebook
Infomaniac, I would tell your GP that you queried whether you really had to stop Levothyroxine and the endo has taken this to mean you don't want to see him and cancelled your appointment but that it wasn't at your request. Ask your GP for another referral to someone on the list of recommended endos you can get from louise.warvill@thyroiduk.org.uk.
Consider yourself lucky to be free of the guy. If that is his attitude you don't really want to work with him. I like the idea of saying to your GP that you queried stopping levo and he cancelled you're appointment. That's kind of subtle.
What reason did the guy give for you stopping levo before you go to him? Seems kind of strange doesn't it - make your patients really ill then make them better - perhaps his thinking is that he gets his patients to the stage that they are practically on their knees by the time he gets them, then he gives them Levo again and hey presto he has an incredible success rate. Sounds an odd guy anyway,
Sadly, that whole department has this attitude and does everything to get people off anything but Levo. Department is test-only led and shows total disregard for anyone who takes matters into their own hands [having been ignored by them] and/or 'not doing as they're told'.
Apols, but this just flashed before me, hence a response now - this is always relevant, immaterial of the date on the original post. Take care, be well xox
I am in two minds as to whether trying to educate these endoknobs helps or not. I also have an appointment soon with mine and know that she will be patting me on the head and ignoring everything I say as usual (I also had an appointment cancelled and moved two months on, despite saying how unwell I was). Whilst it would be easier to smile sweetly at her and let her think everything is fine, I think I want her to know just how ill I have been - I want her to realise that not everyone is "cured" with their little white pill.
She will still pat me on the head but, if I repeat it enough times, maybe she might actually listen one day. If other patients say the same thing, you would hope that it would sink in.
I briefly saw an endo that said she had learnt 'so much!' from her patients, she was Learning every day! She then went on to tell me she would not tolerate a TSH lower than 0.25, or an FT4 at the top of the range, and she never tested FT3! Well, if that is all her patients have taught her, she must have been very ignorant before! She also did not believe in treating with iodine, DHEA, or anything to do with the adrenals. Needless to say, I didn't see her again!
Maybe she meant that she had "learnt" how to dismiss any health concerns her patients had, how to ignore symptoms because they obviously weren't real, and how to shut the door as her patients left in tears.
I don't blame you for not wanting to see that 'Endonob' as I really don't want to see the idiot I'm seeing and I hope he discharges me in March. They really are very ignorant and arrogant and fail to understand what we have to put up with on a daily basis.
I got referred to an Endo and my heart sank 5 mins into the appointment - he was TSH obsessed and took my reaction to his comments, to be a sign of depression. Then he had the cheek to imply that doing research on the internet was a bad idea because " There are a lot of charlatans out there." I felt he only needed to look in the mirror to see one.
His registrar was better on second appointment and increased my Levo by 25mcg to 125mcg and I noticed several important improvements in muscle function (like actually being able to control bladder and not have to dash to loo immediately) even though Endo had previously said I didn't have any muscle problems, but then he assumed and never asked.
Latest appointment back to Endo (heart sank yet again) and he wanted to reduce Levo as TSH was now 0.01 (0.3 - 5.5) but I successfully argued my point about the improvements and he's happy (albeit reluctant) to let me continue for the time being............ big of him, isn't it. He never even bothered with any of the other test results and I wasn't sent a copy this time - so that was a waste of time and money (NHS is paying for nothing) if we aren't informed, so why bother.
I hope you find someone who will listen to you and answer your questions.
Teacherspet, phone or email the endo's secretary to obtain a copy of the results you want. Data Protection Act entitles patients to their results and your endo has already reviewed them so you shouldn't have any difficulty obtaining them.
Yup, I asked - in writing, in advance - and finally got the results but with no ranges provided... 'they' can be as cantankerous as...
I am so sorry that you had this experience with that endo. I have a brilliant endo who listens to what I say, works with me and acknowledges that I know my own body and will always telephone me if I ring his secretary to report any worries or problems. He is a brilliant man who is currently helping me adjust to problems caused by a change in brand of levothyroxine. I sincerely hope you can find someone to help you, we have enough to cope with without not being treated properly.
Hi everyone, thanks for the comments/advice/suggestions I know there is no real point in contacting him again...I just wanted to make him squirm a bit! He is actually from Louise's list so I have suggested that she removes him pronto.
His reasons for taking me off Levo were that as I was a borderline case it would be doing me no good and that was why I didn't feel well. He also said antibodies were just an indication that there "may" be a problem, not that there definitely is.
I've actually been gluten free for over a year now and my antibodies have dropped from 1600 to 1100 at the last count and hopefully now I've been gluten free for over a year now they may have dropped more. I moved house in December and have only just got round to changing my GP so fingers crossed there may be someone there who is a bit more forward thinking.
I do want to try T3 to see if it will help with my weight but I'm just a bit worried about going it alone. If the new GP is anti T3 I might suggest buying it myself and she can monitor me-do you think that might work?
One last thing: I have been constipated most of my life but am loads better on that score now. Would that be down to Levo or going gluten free?
Oh and another last thing (!) can T3 do anything for my hair?
T3 isn't dangerous so you have nothing to fear. Any medication can cause problems if we take too much, so it is work up gradually. We are using hormones which are desperately needed by our bodies. Your GP may refuse to monitor you but all you need are the blood tests to be done regularly and if you begin to feel well you will soon reach the optimum dose. If we take a bit too much, we will soon be aware and drop the dose down slightly or miss it for 1 day.
If you ask your GP to monitor you while you take T3, you need to be sure that the GP knows your TSH will be suppressed. If they don't know that, then they will start getting very twitchy indeed, and who knows what they might do or say then.
Why are these people supposed endocrinologists - the endoknob I've just seen ( and I hasten to add not seeing again) told me to drink more coffee (I have CFS) to stop me feeling tired and that he doesn't believe in T3!!
Good God how do these people sleep at night? They must get their degree and then never, ever look at anything to do with their chosen subject again. Nice work if you can get it! I suppose we should be grateful he had even heard of T3!
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