I have waited over a month for my appointment with endo and boy, what a waste of everyone's time! I came out and felt very upset indeed. I guess I'm not surprised, but the level of rudeness and arrogance was a real shock.
Apparently 10,000iu of vit D3 per day is extremely dangerous. I HAVE to stop it NOW! He implied that I was doing myself real damage taking that amount.
According to him all of my symptoms are due to low levels of iron - (even though I have had low iron levels all my life. Why didnt my hair fall out before? I dont know he said.)
Hair loss, tiredness, insomnia, joint pain, TED everything. I then asked if selenium was worth taking. He said yes!
I asked about my extremely high antibody levels. He said it was of no consequence what so ever. He said that they normally don't even test for antibodies!
He also said I am on too high a dose of thyroxine! He is writing to my dr. God! now I will have to convince gp not to reduce my meds. Im done with NHS endos!!! I wanted to ask if he would consider giving me T3, but I thought better of it. I think its a disgrace that they wont even listen or consider how we feel.
Ok rant over!
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amala57
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Some of us are so stressed with the daily struggle and are desperate to see someone who is knowledgeable in our condition. It comes as a great shock to come across the arrogance and disgraceful behaviour of someone who is supposed to be the 'expert'. So it was a complete disaster for you and I hope GP doesn't reduce your levothyroxine. Source some T3 of your own, you can tell your GP if you wish, add it to your Levo and members will help you onto a nice place where you'll feel well again.
Sometimes it can take a while but a 'while' is better than 'never'.
shaws this surely must describe 90% of those who request an endo referral for uat and amala57's experience reflects that of about 90% of those who get one. I'd have to suspect cancer to see one now (all respect to those w ThyCa) and without a cast-iron trusted personal recommendation I'd still feel uneasy.
If you email louise.roberts@thyroiduk.org.uk who has a list of Endos. I am not sure if they are private or NHS. I hope both. Of course it depends on where you live.
Thank you. If I need to see another endo I will do that. At present I am going to go it alone. Gp and eye clinic appointments pending.....I will see what they both say. Thank you very much.
amala57 Another cr@ppy endo I saw one about 20 years ago and despite the fact that my husband was with me he shouted at me and spoke to me as if I was 2 years old. Three times I saw him, three times I left in tears, I never went back after that third time because he'd lowered my Levo so much he turned me into a zombie, my GP immediately increased my dose and agreed with me when I said I wouldn't be going back to see him.
What were your thyroid results which made him say you were taking too much Levo?
Don't worry about your Vit D. You can always reduce to 5000iu now if you want. I wonder what he'd have said to my 40,000iu daily for two weeks!!
I was put on 20,000 i.u each week.My level was only 9 and GP refused to prescribe any supplements or to repat the test saying if he did it on me he would have to do it on everyone. I went privately then things started to happen. My Vit D lvel needs checking now but the k.i.a Gp says it is not necessary yo check it if taking supplements!! YEAH!
Sorry to repeat the posting but they as in some doctors make me feel so annoyed.
amala57 You weren't taking too much Levo. He was going by TSH only, but both FT4 and FT3 are well within range, in fact your FT3 could do with being over 5 if that is where you feel well.
If your GP wants to reduce your Levo then take this information with you from Thyroid UK, who are NHS Choices recommended source of information for thyroid disorders thyroiduk.org.uk/tuk/about_...
Dr Toft, leading endocrinologist and past president of the British Thyroid Association, states in Pulse Magazine:
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the article by emailing louise.roberts@thyroiduk.org.uk
Endo said the usual bo@@ocks about osteoporosis, cardiac arrhythmias and stroke. It's scary when they say that. But I think I will try again to get some T3. Before my RAI my TSH was always supressed. That's where I felt well.
Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.roberts@thyroiduk.org.uk if you would like a copy of the Pulse article to show your GP.
There's no point in retesting antibodies once Graves has been confirmed. Antibody levels will fluctuate thereafter. Unfortunately, thyroidectomy or RAI don't rid you of Graves which can go on to attack other organs, most commonly the eyes.
I was really hoping this endo would help me to understand the antibody situation. I have graves yet I have hashi antibodies. I was told by gp that I have hashi antibodies as I must still have some thyroid gland left. When I told end this he called my gp an idiot! I asked endo if I could have both graves and hashimotos disease. He thought about this for quite some time, and then said yes! Im really none the wiser. As you know, I have been gluten free for a month now. Im hoping antibodies will settle , for my poor eyes sake.
If you have remnant thyroid cells left because thyroid wasn't totally destroyed by RAI then Hashimoto's won't die off until thyroid is completely dead. Thyroid of Graves hyperthyroid patients can regenerate after thyroidectomy or RAI.
My endo said that regeneration of gland is not possible! Because my tsh went up to 50 after RAI he said there would not be any remnants of gland left. He has contradicted everything I know! Aghhhhh!!!
Oh endo I saw (in finland) said the same about D3, that it's poisonous and will kill me. I wasn't taking any at the moment and he said not to take any. Then GP laughed at it and said it's fine to take high dosage. She agreed to test me as I said hard to know how much to take w/o knowing.
Tho just this morning I read about new study and new test that you only need to get tested once in a life as the need of D3 is individual and that test tells exactly how much you need. It's already available , but couldn't figure out can you ask that test anywhere and how expensive it is.
I know the study is finnish and they found out that for some giving doses upto 2000 mcg didn't increase the serum level of vit D. They were able to point out there is gene regulating the level of vit D need.
I will try to search around what I can find in finnish.
This is the best I could find. Can't find out which test it is , but at least in finland it is supposedly available. Might be only in university hospital tho.
Thanks for this. It is interesting. I am sleeping really badly. 2 to 3 hours max per night. I have read somewhere on this site that vitD supplements can cause insomnia. I have cut mine down now.
Vit D is retained in your body unlike other vits which are water bound and leave your body , if anyone is taking supplements you should have a blood test every 6 months to make sure you are not over dosing on VD3
You have a right to a 2nd opinion, go to your gp and demand to see another endo, take a look at that list that Shaws mentions on a website of endo, see if you can request a referral to one of them, you may need to pay privately for your first appointment, but then if they feelnits nessesary you'll be transferred to their NHS list.
I had a subtotal thyroidectomy for Grave's but have antibodies for both Graves and Hashis. Thankfully I never suffered with TED. I took thyroxine for years after my surgery then started to become overactive again. I stopped thyroxine for a while and even without thyroxine was still overactive as my thyroid remnant had swollen up/ regenerated and was causing Graves hypo again. This was a time when I was feeling very unwell and returning to my GP. She was horrible to me and she said 'you keep coming back here for blood tests but there's nothing wrong with you'. I had to beg hysterically for an endo referral and left in tears. He noticed the remnant swelling straight away and he helped sort things. A good Endo amongst many truly awful ones I've seen over the years. I hope you manage to convince your GP to leave dosage alone and that your TED settles. Well done you for sticking to Gluten free- it's so hard!
Oh thank you for your message. I will have been gluten free for 6 weeks next week! I'm actually preferring it. Feel much better. Since I saw endo my TED has settled down! I'm seeing gp next week. He is a good man. I'm sure he will be fine. Thanks again. I'm glad at least you have a good endo!
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I saw one about 20 years ago and despite the fact that my husband was with me he shouted at me and spoke to me as if I was 2 years old. Three times I saw him, three times I left in tears, I never went back after that third time because he'd lowered my Levo so much he turned me into a zombie, my GP immediately increased my dose and agreed with me when I said I wouldn't be going back to see him.
Appointment with Haemoglobin Consultant for abnormal iron
My recent blood test results and comments.
Waste of time
Doctors a waste of time for blood tests!
