Update doctor appointment

I have come from doctor appointment and doctor stands by reducing my levo from 175mcg levo and 20mcg t3 to 25mcg levo saying it is my own fault my results are over range I am not feeling over medicated and I still have hypothyroid symptoms and I asked the doctor if my high thyroid antibodies might be causing my symptoms and he said what do thyroid antibodies have to do with anything doctor says ferritin is in range as is vitamin b12 and folate is only slightly under no ideas what next to do any ideas please? thank you

tsh <0.02 range 0.2 - 4.2

free t4 26.5 range 12 - 22

free t3 4.1 range 3.1 - 6.8

ferritin 16 range 15 - 150

folate 2.2 range 2.5 - 19.5

vitamin b12 207 range 180 - 900

total oh vitamin d 13.5 range <25 severe vitamin d deficiency patient may need pharmacological preparations

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10 Replies

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  • Are you supplying your own T3?

  • No I am using what is left from my last endo I have 2 months left of it and my new endo appointment will not be for another 6 months

  • First of all it is cheek for him to blame you for your high FT4 and low TSH. TSH is useless if we take T3 in the mix. However to reduce you to 25mcg I think could be quite dangerous. I think I'd refuse. How could it be your own fault - I'd rather do my own thing as he sounds awful and unknowledgeable.

    Also the blood tests were introduced for levothyroxine alone so adding T3 the results cannot match the tests which was for taking levothyroxine alone.

    It is only FT4 which is over-range and your FT3 isn't optimal. So it could be you don't convert (levo) T4 to T3 so your result of FT3 is due to taking 20mcg. I am not medically qualified but that's my guess. I'd just do what you think is best for yourself. Adjusting doses doesn't bode well for us unless we are very overstimulated. TSH is from the pituitary gland so I'd go with your instinct:-

  • Chelsie117,

    Can you get hold of your endo and get endo to talk to your GP? If not, I would change your GP as soon as possible.

  • Thanks no unfortunately I am between endos my last one transferred my care to one in Cardiff and I have been told by nhs appointments line I have to wait another 3 months to see him

  • Chelsie117,

    I think you need to contact either the first or new endo as a matter of urgency because your GP's reduction in dose is going to make you very ill. If not you need to see another GP as soon as possible.

  • I cannot see any justification for your doctor to blame you for anything. If you are being prescribed thyroid meds then your GP obviously intended you to take them. For him to back-pedal like mad and now blame you for what he prescribed is absolute nonsense.

    You will be very, very ill indeed if you cut your Levo down to 25mcg and cut out all your T3.

    I think you need to post a new post on the forum and ask for online sources for NDT or Levo + T3 to be sent to you via private message, and buy whichever you choose as soon as possible. Levo is surprisingly expensive online, I don't know why, (unless someone else knows better - I've never bought Levo online myself) so you might want to start with NDT. You must not leave yourself at the mercy of your doctor who is clearly both incompetent and malevolent.

    I would definitely agree with everyone suggesting that you should change GPs and contact one of the endos involved as soon as possible.

  • ferritin 16 range 15 - 150

    folate 2.2 range 2.5 - 19.5

    vitamin b12 207 range 180 - 900

    total oh vitamin d 13.5 range <25 severe vitamin d deficiency patient may need pharmacological preparations

    ****

    Regarding the folate and vitamin B12 levels, you need to ask the people with Pernicious Anaemia (PA) for help, because they know lots about B12 and folate deficiency. They have a forum on HU which can be found here :

    healthunlocked.com/pasoc

    You will have to follow the PA Society just like you followed this one. The follow option is in the banner at the top of the page at the link I just gave.

    ****

    Ferritin : Your ferritin (iron stores) is much too low. In order to make good use of the thyroid hormones you take your body needs good levels of minerals and vitamins. For ferritin this means having a minimum level of 70. Optimal would be mid-range or a little bit higher. So with the reference range you give a level of about 80 - 100 would be good. Some people need it to be a little higher - say, 100 - 120. Don't go to the top of the range.

    In an ideal world you would check some other levels before starting iron supplementing. A full iron panel can be done with a finger-prick test with Medichecks :

    medichecks.com/iron-tests/i...

    medichecks.com/how-it-works

    medichecks.com/dl/Medicheck...

    But I think in the short term your ferritin is so low that supplementing shouldn't do any harm.

    it is essential for anyone taking iron to get tested regularly - how often this is depends on how quickly your levels rise. I would suggest testing after 2 - 3 months to begin with. If your levels rise slowly you could test rather less often - say every 4 months.

    With all iron supplements the important thing is to know how much elemental (pure) iron there is in the supplement.

    Ferrous fumarate 210mg (FF210) is a popular supplement. Doctors prescribe it but it can be bought in pharmacies (if the pharmacist agrees) and online without a prescription. I managed to get this (in a box of 84) from Lloyds and Tesco pharmacies without any bother. Boots are less obliging. Each pill of FF210 contains 69mg of pure iron. The normal dose is 1 tablet, 3 times a day, giving you 207mg pure iron per day. The ones I bought looked like this, but there are other brands :

    i.ebayimg.com/images/i/1819...

    Ferrous sulfate (sulphate) 200mg - similar levels of pure iron to FF.

    Ferrous gluconate - contains roughly half the pure iron of FF.

    Ferrous (or iron) bisglycinate - contains about 20mg - 25mg pure iron, depending on brand. Sometimes sold with the name "Gentle Iron".

    Alternatives are haem (UK spelling) or heme (US spelling) supplements, or supplements that contain ferritin directly rather than iron. I've never tried either of these and they are more expensive that the supplements I listed above. For more info, see this written by one of the admins here :

    dropbox.com/sh/3waycnbzhywi...

    Another alternative is to eat a good-sized portion of liver (any kind) or black pudding a couple of times a week, if you eat meat.

    Whichever form of iron you take you need to take 500mg - 1000mg vitamin C per dose of iron. This has two advantages.

    1) It helps the body to absorb iron.

    2) Some people suffer from constipation when they supplement iron. Vitamin C has the opposite effect. Adjust the Vitamin C dose to keep yourself comfortable.

  • total oh vitamin d 13.5 range <25 severe vitamin d deficiency patient may need pharmacological preparations

    Regarding your vitamin D - this is also very bad. You need a dose of 5000 iU - 10,000 iU vitamin D tablets or capsules per day, and you need to get to a level of approximately 100nmol/L. Some people prefer to go up as high as 150nmol/L.

    High dose Vitamin D3 capsules can be bought on Amazon, Ebay or other sites selling supplements - no prescription required. Choose one with as few fillers as possible.

    Vitamin D3 needs to be taken with your fattiest meal of the day, and at least 4 hours away from thyroid meds.

    Vitamin D3 can become toxic if your levels get too high. A finger-prick test can be bought here - and you will need to test in, say, 4 months to see how well you are doing :

    vitamindtest.org.uk/index.html

    If you want help on getting a good sample from a finger-prick then post a new question and ask for advice.

    ***

    Taking vitamin D3 will raise the amount of calcium you absorb from your diet. You want this extra calcium to go into your bones and teeth, you don't want it lining your arteries. To achieve this you need two co-factors - vitamin K2 and magnesium.

    ***

    Magnesium : You need about 300mg - 350mg magnesium per day. For a suitable supplement choose one that appeals to you from these lists :

    naturalnews.com/046401_magn...

    metabolics.com/blog/the-def...

    globalhealingcenter.com/nat...

    ***

    Vitamin K2 - I just take one which gets good reviews on Amazon at a price I'm prepared to pay.

    ***

    As well as not having the right dose of thyroid meds to help you feel well, your very poor levels of nutrients will make you feel terrible. If you want to feel well then fixing your nutrients isn't optional.

  • I would write to the new endo and copy the old one in and state what you have been told to do and say it frightens you and could you possible be seen as soon as possible and if that isn't possible can e given guidance. May a point of naming your GP in the letter and the surgery address and aldobsay you realise the present dose is slightly high and could a suggested reduction be made in the mean time to be tested at the hospital after 6 weeks.

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