Being referred to an endo - what should i expect at the consultation?

Been on levothyroxine for 10 years now and i'm currently on 125mg levo. Recent blood tests are:- TSH 0.52mu/L & free T4 14.9 pmol/L. B12 is 319 ng/L and ferritin is 7.3 ug/L which they've said is below limit and iron deficient. Vitamin D level is 38 nmol/L and is deficient. Doctor said he didn't want to increase my thyroxine as it may suppress something else. I've now got to wait until February until I see and endo. What sort of things will they ask me at the consultation and what things should i be asking and expecting of them. Will it be the case that now they will test my T3 level and i will need to combine medication for that with levo? My T4 level has dropped from about 18.9 within about 9 months. Is this usual? I would be grateful of any information people can provide for me. Thank you

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  • Livelifetothefull, it's impossible to guess what will happen in any consultation. Height and weight are measured immediately prior to my consultation, hands examined for hot/cold and tremors, pulse sometimes taken, throat and neck sometimes examined, thyroid bloods results are reviewed and discussed, dose titrated if necessary and any issues discussed. A bloods request form is given to me to have a blood draw prior to the next consultation. FT3 is only tested when TSH is suppressed at my hospital. Other members have their blood draw via their GP prior to consultations.

    It may be helpul if you make list of all medications and supplements you take to either prompt your memory or give to the endo plus a short list of symptoms/issues you wish to discuss. No.1 should be to ask for FT3 to be tested as your falling FT4 may mean you aren't converting T4 to T3 well.

    Some endos will prescribe T3 in addition to a reduced dose of T4 if FT3 is below range or very low, but not all will. My endo ignored my below range FT3 and only prescribed T3 6 months later after I improved my health considerably by self medicating.

    Low ferritin can inhibit absorption of thyroxine and low vitD inhibits conversion of T4 to T3 so correcting these deficiencies may improve your hypothyroid symptoms. Has your GP prescribed iron and vitD?

    B12 is low, but will be in range, and it will be worth you supplementing 1,000mcg B12 methylcobalamin sublingual lozenges, spray or patches. Did your GP test folate when B12 was done?

  • Hi - thanks for this information it's been really useful. Folate level is 9.2 ug/l (3.4-20.0). GP wants to wait for me to go to endo to let them prescribe me vit D and iron. appt is 10 feb so quite a while to go with quite low iron levels. How does the folate level seem to you? (I'm no expert!). I think from what someone else has said - t3 is quite an expensive drug for the nhs to pay for, hence why docs are reluctant to prescribe?

  • Livelifetothefull, I'm not sure why the GP can;t prescribe iron and vitamin D now, things aren't going to improve while you wait until Feb.

    Folate half way in range is fine. There is the RDA of folic acid in B Complex that I recommend you take with B12.

    NHS Liothyronine (T3) is expensive which is why I suspect GPs are reluctant to prescribe it. Recent guidelines advise T3 should be prescribed by specialists.

  • I was vitamin D3 deficient, yet I got told by a GP that I could afford to get them myself even though my D3 level was 28 nmol/L [60.0 - 150.0] back in December 2014.

    I only managed to get T3 when I asked about NDT and this consultant went on by telling me that he'd lose his medical license if he prescribed NDT and it was only then that he put me on T4/T3 combination. My local GP surgery did not complain about the T3 prescription. One of the practice partners was even apologetic when I wrote to them about that it was the hospital consultant who prescribed them to me and that I should not have to make an appointment to see a GP to get a repeat prescription.

  • with a ferritin level that low no wonder levothyroxine is doing little good

    its vital to get ferritin up to over 70 by taking iron plus at least 1000mcg vit c a day and this will take several months

    hashimotos of itself causes ferritin to crash and low ferritin means your body cannot utilise levothyroxine and convert it into the T3 your cells need to function

  • Wow - thanks for your information. You seem to know a lot about how things work. This information. Will help me to work out what medication I need now & will help me at the endo appt.

  • Whenever I see the endo, I take a typed list of my symptoms and the date, and request that it is put into my file. I know that they do, as it is still there for my next appointment. I don't know that they actually take notice of it, but it at least shows certain issues may be ongoing, or getting worse (or better!)

    I also take someone with me. Much as I dislike it, I feel it adds credence to anything I want to say. I hate that they listen to my husband more than me, but it has definitely helped.

    My own experience of endo visits, is the usual weight/height/blood pressure tests (but not always). How your own appointment is will totally depend on who you see. I have a bit of a jaded view of endocrinologists unfortunately, and no expectation that they will do anything unless you ask. Mine eventually did test T3, and for various vitamin/mineral deficiencies, but only after I begged constantly. There has never been any acknowledgement that my health issues could possibly be attributed to Hashimoto's. I am always polite, never aggressive, and don't ever give the impression that I could possibly know more than the doctor about certain things!

  • I think the T3 test is one of the first things I will be asking for as I think this is the key to getting things right. I'm a bit worried about getting the doesage right but hopefully you guys on the support group will be able to help me?!

  • I would say that your TSH is high and that you need more thyroxine to lower TSH. This should also raise your T4 too. Doc should prescribe iron, vit D & calcium combo, though probably wont prescribe B12, so it is important to supplement on that. I am currently taking 200 mcg thyroxine and 25mcg of T3. Some of it is prescribed, though I am self medicating as well. Had a hospital appt last week for ongoing bowel issues (prob still have endometriosis - am post hysterectomy), though got a diagnosis for impacted bowel and severe constipation, piles and IBS (all linked to being hypo) and of course had to give details of all my current meds, and I don't hold back. I tell them that I self-medicate and if they don't like it, well, its my choice. Specialist said thyroxine is dangerous ect ect, the same old scare tactics - needless to say it had no effect on me. Depending on the Endo you see, many will tell you that T3 is very strong and again dangerous. For many people, the only way to get well is to self-medicate and take control of their own health as doctors, endos ect don't always know best, especially when it comes to hypo patients.

    A good place to start to prepare for endo appt is to find all you can on the subject - have a look at the works of Dr Skinner, Dr Myhill (look on her website), Dr A Tofts work, stop the thyroid madness website, Many Shomon also has a website and has written a few books. There is lots of good material out there and maybe take some along to your appt. I took in Dr Skinners book to my gp surgery and asked them to order it - whether they will is another thing, but at least I tried.

    Really hope your appt goes well x

  • Thank you - I will read up on the material u've recommended & will definitely go with lots of Information for my consultation.

  • Also, with your vit D being so low, they should give you Calceos on prescription. I had a really good GP when I lived in Cardiff and she did a parathyroid test my vit D was very low, and I have been on Calcoes ever since. I don't live there now and have a different GP, however, its on my repeat and I will have them for life.

    Hopefully your endo will prescribe the Calecos (vit D/calcium combo).

    Really hope your consultation goes well:-). If you get a good endo, pass on their details to Louise Warvill and she will add them to her list.

  • Never heard of calecos & that's why this support group is so good. As they say - if you don't ask you don't get! I'm hoping the endo I see is good. Seems like there's a real mixture out there of good and bad. If you get a not so good one, it would make you feel like "what's the point". Endos generally should be your last port of call. Will feedback when I've seen the endo.

    Thanks

  • Clearly you can and should begin to take iron supplements and D3 NOW! Both are easy to obtain. D3, maybe try a spray. to see if you absorb it more easily that way. Think about say 5,000 iu a day until you see the consultant - there's loads on this on the internet. The NHS is limited in the D3 tablets it can prescribe. Iron, find an absorbable one that suits you, talk to your pharmacist - probably not ferrous sulphate. You need more than the RDA, and you should be eating a lot of red meat (if you are not vegetarian).

    Your GP is failing you.

  • Brilliant - thanks for this Information. I will get off to the chemist sooner rather than later. Don't think I can stand feeling like this into February!

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