Hypothyroidism 1st year...what should I be asking my GP if I feel my treatment is wrong?

So I was diagnosed, rather abruptly out of the blue, early last Sept when a run-of-the-mill thyroid blood test came back with TSH 13.02 and free T4 9.1. My GP started me on Levothyroxine 50mcg daily. Retested 8 weeks later, TSH 5.69 and free T4 15.6, so thyroxine was increased to 75mcg. Bloods back at end of Dec were TSH 1.52. Doctor seems happy with this...I'm feeling rubbish!

Bloods since have been checked March TSH 1.65 and again June TSH 1.44. All these bloods were taken mid morning generally, when I was taking Levo about 30mins before breakfast when I didn't know any better.

my difficulties are that I've little knowledge or understanding of my condition, but my GP herself is hypothyroid and I worry she will dismiss my concerns cause Levo works fine for her. Daft I know.

Looking back, some hormones were checked and a diagnosis of PCOS was given at same time as hypothyroid but my vitamin levels have never been checked. My heart races, despite trying to stick to one brand, changing dosing from before breakfast to bedtime. I'm becoming more and more tired again, and I'm feeling nauseous and shaky between meals. Should I be asking for other tests? And why do we not seem concerned about why I'm hypo all of a sudden? Asked GP why and she said it just happens...

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  • Hello samimanf83,

    Sorry to hear you are still not feeling well. Your TSH is coming down but many people function better with a TSH a little lower than yours.

    Eptopic heart beats can be caused by both under and over medication or with the right amount of medication but it isn't working properly for you.

    It is vital you get those vits & iron checked. Ask you GP to test Vit B12, Vit D, folate and ferritin. Also next time you have thyroid hormones checked, ask for thyroid antibodies to be tested TPOAb & TGAb. If she is uncooperative, there is a link below for private testing.

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

    Post results complete with ranges (numbers in brackets) and also any thyroid hormone test results you have, for members to comment.

    Deficiencies in vits and iron are common amongst those who suffer hypothyroidism and can effects how meds work in the body.

    It is important to take your pill on an empty stomach with a glass of water, 1 hour before food, 2 hours before supplements and 4 hours before calcium, iron or vit D supplements. I notice you take yours at night..this is ok as long as it is on an empty stomach. I take mine upon waking about 6am as find this easier with many supplements to be taken through the day.

    When being blood tested - leave 24 hours between last dose and blood draw and try to have the blood draw early in the morning when TSH is highest. Advice now is to fast as well.

    A good read is "Your Thyroid and How To Keep It Healthy" by Dr Barry Durrant Peatfield.

    I hope you feel better soon,

    Flower007

  • samiman, sounds like with the PCOS you've got hyperinsulinemia. This means when you eat simple carbohydrate foods, your pancreas produces a lot of insulin. But the problem is, insulin hangs out a lot longer in the blood than the glucose from the food you've eaten. Blood sugar levels go down quickly and the symptoms you experience are suggestive of this. It doesn't mean that your blood glucose is high or low, it just means that there is a sudden decrease.

    The only way to fix this is with diet. There's plenty of good information on line as to how to tweak your diet to prevent these situations from happening.

    Also I agree that your thyroxine dose is probably too low. You doctor should 'experiment' by increasing to 100 mcg and see how you feel. TSH in the 1.5 area is appropriate for 'normal' people but for some reason, with us hypos, we need TSH that is at bottom of range, like 0.5, in order to feel normal. I don't know why.

    in addition, please ask her to check your ferritin, folate, vitamin D, vitamin A, and B12 levels. Our bodies, when hypo, and who knows how long you were hypo before diagnosis, tend to not absorb nutrients efficiently. Please get the results and post them here so we can help you out.

  • Thanks for your advice, I definitely intend to see GP soon and get these tests done. My bf is a bit on my case saying I should get in asap, but I'm one of those people who puts it off and finds a reasonable excuse to wait and wait some more.

    I thought if your bloods fall within range, then they won't increase your medication, even if I insist I want my results to be much lower. My thyroid has been tested on occasions through my adult life, looks like my pre-diagnosis results were 1.05-1.68 and on those tests nothing more was ever done. In fact my thyroid was checked in Feb 14...fell into range but by that Sept 14, it was high and I was told it's hypothyroidism..and I've done as I've been told by my GP ever since.

    my mum and her mum too have been diagnosed with type 2 diabetes, I expect I am in the risk category too, so my non-fast glucose is checked too, would it still give a good reading with hyperinsulinemia? Funny, no one in the family has a thyroid problem tho.

  • At this point your HbA1c will be in normal range because the beta cells are pumping out insulin in response to glucose entering the blood stream. Actually first thing that happens even before insulin is a small peptide is secreted by the stomach in response to detection of glucose. Then even before glucose gets into the blood, the beta cells respond.

    If you do an experiment with a glucose meter and cooked rice you'll see what I mean. You will have a normal blood glucose at the start, let's say 5.2. Then you eat half a cup of rice every 30 minutes for 2 hours. You will see that your glucose will rise but still be normal range. But then you'll see it fall and it will fall even after you eat the next dose of rice. It's like the body is tamping down the glucose level in the blood. At the end of the experiment your blood glucose may be down to 4.2 or lower. This is why people don't feel well when they eat a lot of imbalanced meals high in easily digestible carbs. This is the 'snack effect'.

    The only way to reverse this process is to start the day correctly by consuming a balanced breakfast. Starting the day with easily digested carbs and sugar will start up this roller coaster ride for the rest of the day.

    One of my friends was forever getting the hypo shakes because she'd keep dosing herself during the day with sugary garbage. It took a while to convince her that she has to stop this habit if she wants to feel better. She'd come over for supper and eat a normal, balanced meal. Then ask for something sweet. Well, I don't serve dessert. She'd eat a tablespoon of apricot jam mixed into a bit of yoghurt. This was entirely ridiculous given that she'd eaten a large meal. One time she left and came back with doughnuts. This, after consuming at least 1,000kcal of real food.

    Your pre-hypo thyroid TSH readings were very normal. But for some reason when we are taking thyroxine, the pre hypo normal TSH readings no longer apply. Don't ask me why because I don't know. But if my TSH goes to 1.0+ I am hypo with some myxedema. My TSH needs to be about 0.5. Your GP shouldn't have all that much problem with increasing the dose by 25 mcg and do it at 12.5 mcg increments. Or increase by 25 mcg taken every other day. See how you feel.

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