Hypothyroidism and me!?

Hi everyone,

I have been diagnosed with hypothyroidism for 12 years and have been on levo thyroxine for 12 years. I started on 50mg but then was put onto 75mg a couple of months later as 50mg was not making the symptoms better. So I was on 75mg for 10 years with annual check ups.

I have not felt 'well' since I was 18, I'm now 33! I have had silly doctors mention things to me like "You do know you are at higher risk of developing diabetes" but then never testing my blood sugar levels. Also lovely comments about how I need to lose weight! I have never lost any weight since starting on levo. It was not until I joined here and spoke to a pharmacist that I realised that I needed to be tested for a lot my than my T4!

So I went to my doctors two years ago and demanded I saw an endo as I think 10 years of being fobbed off and not knowing how or why I have hypothyroidism is enough. I went to see an endo who told me it wasn't my fault that I have hypothyroidism and just that my thyroid didn't work (not much to go on there!). I asked about T3, he said no, then I asked if I should take iodine, he also said no. But he agreed to up my dose of Levo to 100mg. I felt a bit better and had about 5% more energy!!!

Then this summer after having my annual blood test I was told that my Levels was too high and I'd have to go back on 75mg, which I did. I put on weight and felt tired as usual. I went to see another doctor about something else and she asked if I was feeling tired and said I could start taking 100mg of levo but if I felt twitchy or ill to go back to 75mg.

I don't know what to do as I seem to have to ask my doctor for blood tests, what if a different doctor won't let me choose my dose anymore (doesn't make me feel much better anyway!)?

I would just like to feel well again but I hate that doctors don't seem to know much about my condition or what to test for. Please help : (

9 Replies

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  • Starbob What you need to do is ask for a print out of your thyroid test results. Assuming that you are in the UK then you are entitled to your results under the Data Protection Act 1998. When you have then, post them on here and members will comment.

    It would really help you if you had all the following tests, so if you haven't then ask your GP to do them (or you can get them done privately which might be better as your GP probably won't be able to get them all done - we can give you details of where to get them done with a simple fingerprick test).

    TSH

    FT4

    FT3

    TPO antibodies (Thyroid Peroxidase)

    TG antibodies (Thyroglobulin)

    Vit D

    B12

    Folate

    Ferritin

    The vitamin and mineral tests are important because they all need to be at optimal levels for thyroid hormone to work properly, and low levels can cause symptoms very similar to symptoms of hypothyroidism.

    If you have had any of those tests done then post the results with reference ranges for members to comment.

    When having thyroid tests, always book the very first appointment of the day, fast overnight (water only), and leave off Levo for 24 hours.

    When you take your Levo do you take it on an empty stomach, one hour before or two hours after food, with water, no tea, coffee, milk and away from other meds and any supplements that you may take?

  • Thank you, I will ask the GP for these tests ( and save up for the private test as well).

    I usually take my Levothyroxine first thing in the morning with water and wait an hour before I eat/drink anything else.

    At the moment I'm taking folic acid as I want to try for a baby in the new year which has the benefit of having vitamin D in it. It was the pharmacist that advised me to take vitamin D supplements. I was on the contraceptive pill as well which I know can affect Levothyroxine but I've stopped taking it 2 months ago.

  • I don't know too much about pregnancy and Hypothyroidism, but from what I've read in some posts on here is that TSH needs to be under 2 (I think) and Levo is usually increased during pregnancy. It's something you can post separately about for advice.

    Something you probably won't have been told about Vit D by your GP or pharmacist, is that when taking D3 we also need it's important co-factors K2-MK7 and magnesium.

    vitamindcouncil.org/about-v...

    No idea how much is in your supplement but D3 aids absorption of calcium from food and K2 directs the calcium to bones and teeth rather than arteries and soft tissues. D3 and K2 are fat soluble so should be taken with the fattiest meal of the day. D3 should be taken 4 hours away from Levo.

    Magnesium comes in different forms, check here to see which might suit you best naturalnews.com/046401_magn...

    The most expensive of the private tests is currently £99 and covers everything I mentioned in my previous post. If you don't need them all there are other options bluehorizonmedicals.co.uk/P...

  • First things first. Ask your doctor for a new blood test and ask for a Full Thyroid Function Test which is TSH, T4, T3, Free T4, Free T3 and antibodies. Also ask for B12, Vit D, iron, ferritin and folate. Tell him you've had enough of symptoms and adjustment of hormones and you still haven't improved. You have taken advice from the NHS Choices for information about dysfunctions of the Thyroid Gland, Thyroiduk.org.uk.

    The test must be the very earliest possible, fasting (you can drink water) and also allow 24 hours gap between your last dose (I assume levothyroxine) and the test and take it afterwards.

    Get a print-out of the blood tests with the ranges and put on a new post for comments. Then you can go from there with advice from members.

    If doctor will not do the above tests, you can, if you can afford it, get a private one from one of our recommended labs. Remember you want a TSH of 1 or lower.

    The aim is a TSH of 1 or lower, not somewhere within the range. You cannot depend on most doctors unfortunately as they know less than we do. Most on this forum have improved their health with support from others who've gone through similar problems with either getting diagnosed, prescribed too low a dose: dose adjusted due to the TSH alone or doctors believing anywhere in the range is fine.

    Very rarely is a FT4 and FT3 blood test taken and I'll give a link and look at the reason we need both occasionally particularly if symptomatic.

    thyroiduk.org.uk/tuk/testin...

    thyroiduk.org.uk/tuk/TUK_PD...

    (I am not medically qualified. I have hypothyroidism which was undiagnosed/untreated for years but, of course, I was given different diagnosis .)

  • Thank you, I hopefully will get some of these tests done in the new year. I would really like to make sure my hypothyroidism is under control before I start to try for a baby. I hope this concern would make the GP more understanding. can only hope!!!

  • I hope this link will help you have a successful pregnancy. I think you might have to take a stand if Dr. is not forthcoming for I doubt they know too much about caring for a pregnant woman. I hope I am wrong. There is some good info within the link about ranges etc.

    hypothyroidmom.com/i-lost-m...

  • Have they tested you for b12 deficiency? This also makes you tired along with a lot more nasty side effects, I was told once you had one auto immune problem you are susceptible to them all.

  • No, but I will ask.

    It does sound like the poor 'advice' you get from GP's! I once asked if my cholesterol (which has not been tested for nearly 11 years!) levels from my test were O.K and the GP said yes, but that it could be high as half the wold is starving hence they have lower cholesterol levels! Really good helpful advice!

  • In addition to the other comments add in checked for your Zinc too, it's pretty much a given if your hypothyroid, your Zinc is rock bottom unless you supplement. Also vitamin A is needed if your supplementing Vit D3 and K2 they all work together.

    A guide for the ranges are TSH 1or below, FT4 about 60% and FT3 75-80% of the range. If you do supplement with iodine make sure you have Selenium in your diet or you could get a bad response from it...

    You need to know these things, or you don't know if your converting properly if all your doctor is going on is your TSH. And neither does your doctor, period. Oh lastly your mcv ((mean corpuscular volume) ought To be 85 or below this is an indicator of low stomach acid, if it's higher than say 86, and you may have a nutrient absorption issue, as it's needed to absorb nutrients... Hope this helps...

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