Advice for seeing Endo

Hi all, I have finally been referred to see an endo after 2 years of asking. I have my appointment for 20th Jan. I have been onto the gp about my b12 and ferratin levels which are pretty low but as they are only just in the (huge) range that they go by they wont do anything. I have also been asking for my ft4 and t3 to be tested but they always refuse. My anti-thyroid anti-bodies have been very high for about 3 years and it wasn't until I saw a locum last month that I was told I should have been referred years ago. I need some advice on what to say to them and what to take, I had my records about 4 months ago so will probably take them with me. Any advice would be brilliant x

6 Replies

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  • So you are not on thyroid medication? What a horrible GP, how stupid can she be, of course you need to get your thyroid levels checked (!!).

    I would bring the blood results and maybe make a list of symptoms. Talk and be assertive but polite.

    What are your B12 and ferritin levels? You can supplement those by yourself. Most doctors won't do anything because it's often "perfect in range". That range is so huge, if you are on the lower end you should supplement. Can do no harm.

  • I'm on 100 levothyroxine but I just seem to be feeling worse. I have asked about other medication to help but they refuse to help me. I'm in uni at the moment to resit my second year as I was so poorly the first time around so I cant really afford to by the vitamins and stuff.

  • I should imagine you are undermedicated. When you get your a blood test for your thyroid gland you do not take levo on the morning, but after the test. Always get a copy of your blood test results with the ranges for your own records and so that you can post if you have a query. As your GP wont prescribe for your low B12 and Vit D I hope the Endo will. If not please supplement with methylcobalamin B12, sublingual.

    If you can get a copy of your latest blood tests with the ranges, with the B12 and Vit D and post on a new question you will get more comments. Low B12 and Vit D are not just vitamins they are a hormone and pro hormone and so important for our wellbeing and can cause symptoms too. We are entitled to copies of our blood tests, just ask the surgery. Some receptionists may be unwilling unless they have confirmation from the doctor but there should be problems.

  • So you are on meds but they never checked FT4 and FT3? To know which dose is right for your body they have to check FT4 and change dose untill you feel better.

    I'm sorry you can't afford vitamins, maybe you could ask to let them check in your blood. If it's really bad you need supplements, food alone often isn't enough.

  • Sophiesmam, what are your recent thyroid results? If your B12 and ferritin are low in range you will benefit from supplementing. 90 days methylcobalamin will cost around £10 inc p&p from Amazon and a month's worth of B Complex from a supermarket is less than £1. Ferrous fumarate is around £7 a month from Lloyds and other pharmacies but there may be cheaper iron supplements available if you shop around.

  • I always took a notebook which had all my blood test results written in it, I had them written like on a chart which made it easy to quickly write down what the doctor said my most recent results were.

    I also used to make a note of how I had been / was feeling and any questions I had about my treatment etc.

    I used to say I had questions and that I was going to work my way through them - no one ever commented on that, I saw various assistants as well as my endo when I was being trap eaten - I'm in remission from Graves at the moment so I'm not seeing anyone at the moment.

    I think people with thyroid problems find that it is very difficult to remember what they want to say when they don't have everything written down. Besides I also used to feel that if you appear with a notebook and a well organised approach it makes the person you see sit up and take notice.

    I'll say this though, mostly when I came out from seeing the endo or whichever assistant I saw I felt ' very flat' so don't be surprised if you feel that way too, I don't know what I was expecting but my appointments never really met my expectations - hopefully you won't feel like that.

    As for 'in range' those two words are like a red rag to a bull with me - the range is usually so wide you would need to be so hyper you were swinging from the ceiling like I was or almost comatose and chilled to the marrow at the other end, not to fit into it somewhere.

    My B12 was only just in the range, my endo said that was fine but my mum had pernicious anaemia and looking back was probably totally hyper too, so I bought some sublingual Methylcobalamin and supplemented to get it up near the top of the range. same with vitamin D - I couldn't even get my surgery / endo to test it so I use the place listed on the TUK website - you pay by phone and get a kit sent to you by post, jab your finger with the tool they provide, dab some spots of blood on a card and post it back, a few days later hey presto - you get the result online saves all the Afro trying to persuade your medical people to test you

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