Not sure what I should be asking


I'm new to this site, so apologies if I'm going over old ground but I'm not really sure where to start!

I'm 38 and was diagnosed with Hashimoto's disease when I was 7. My great grandma, grandma and mother all have Myxoedema that was diagnosed when they were adults. Because I've pretty much always had the condition, no one has ever really explained it to me and to be honest, it hasn't been a problem for most of my life. I go for my blood tests and they adjust my levothyroxine if necessary. I've had the odd bout of insomnia and my skin occasionally got dry, but nothing too severe.

My weight was never an issue until my mid/late 20's and in fact I was probably a little underweight until I was around 22. About 10 years ago my dose was increased to 225 a day. I'm not sure when the weight started to pile on, but by the time I was 30 I was a size 16. I reached my heaviest around 5 years ago and was a large size 16, but the side effects of medication for another issue resulted in some weight loss and I went back down to a size 12. However, once I came off that medication, the weight accumulated again although I didn't put it all back on. Since then my weight has been pretty stable, give or take a couple of lbs.

I went for my thyroid function test 12 weeks ago and the doctor called me in and reduced my dose to 200 per day. I said to her at the time that I was struggling to lose weight. She told me to take up exercise, such as walking. I think she presumed because of my size (I'm 5'4" and a size 14) that I don't do any exercise. I told her that I go to the gym at least twice a week, I work three jobs, one of which is as a sports massage therapist for an ice hockey team, and another is at a roller disco where I spend between 3 and 9 hours a week roller skating. In addition to that, when the weather is good I skate outside at least once a week covering between 6 and 13 miles. She didn't really react when I told her this and just gave me my new prescription and told me to come back for a retest in 12 weeks (which I will be booking this coming week).

Since being on the lower dose, my insomnia has returned with a vengeance, I'm constantly tired to the point of struggling to stay awake at my desk, my skin is dry, my hair is brittle, my back aches and I've put on 2lbs. Because I do train and skate a lot, I don't just rely on scales, I also measure my body fat and it is up slightly. My calorie intake is less than 1400 a day and my carb/fat/protein split is not far off the ideal, so I'm finding this whole thing very frustrating and extremely stressful.

So, next week I'll be booking in for my function test. If I don't get called in after the results, I will be making an appointment to speak to the doctor because something clearly isn't right. The thing is that I have no idea what I should be aiming to get her to do. Should I ask for a copy of my results? Should I be pushing for any other kind of tests? Any advice would be gratefully received.


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7 Replies

  • I am sorry you have had an issue since such a young age. I am giving you a link of an archived website of a scientist/doctor who died last year and worked so hard to try to make us better. He lived in the USA and apparently the Big Pharmaceutical companies give monetary rewards (I believe to politicians too) if their meds are used, so they come down hard when alternative medications are used. He also owned Thyroid Science, both of which are archived due to Probate.

    Many people complain of weight gain whilst on levothyroxine.

    Some of the links within the above may not work.

  • You need to start getting copies of ALL tests results, thyroid or otherwise and you need for her to be checking certain vitamins as many thryoid sufferers are low in them.

    These vitamins are B12, VitD, ferritin (iron storage), iron and folates. For your body to be able to use your thyroid medication to its full potential these vitamins need to be optimal for thyroid sufferers, not just within the NHS range but sometimes just below the upper range. For example the B12 range is approx 190 - 900 and a gp will say things are find in you have a result of 250 but a thryoid patients needs a result over 600 and nearer 700 for her their thryoid meds to work to their full potential and as yiu can see that it a big difference.

    Also see if you can get your GP to do a full thyroid function test and not just a TSH test as this will give you a clearer picture as to what is going on. You need TSH, FT3 and FT4 although the FT3 test (which is the most important) is getting very difficult to get done due to cost.

    Moggie x

  • This is really interesting. Thank you.

  • This is another link re hashimoto's:-

  • Have read the book that shaws suggested in the website above and it is an excellent read. I was fortunate or unfortunate to be diagnosed with Crohns in my 20's - so had to learn the hard way about auto-immune illness. The Hashimotos diagnosis came in 2005 at the age of 59 - so chicken or egg ? I do believe in healing the gut and feel this is the way learning early on in my life about guts was a hope you soon feel better.

  • Thanks all. I've just got in from skating so going to settle down and have a read and make some notes.

  • Hi. So, I had my follow up blood test on 19th and I saw the doctor today. I've been feeling terrible since my dose was reduced and as I expected, she wants to reduce it again. Initially she wanted to put it down to 150 but we agreeed on 175 this time because I've been feeling so awful and it seems like a big jump to 150.

    She wasn't really prepared to listen to me to start with and it wasn't until I started crying that she started to take notice. I have to say I was a bit surprised and kind of embarrassed because that's really not like me but I'm glad I did! She has agreed to do full bloods next week including vit B12 and vit Dcso we can get a full picture, and she's given me copies of my last two test results.

    Now, I've never had copies of my results before and I'm a bit perplexed as to what's going on here. My results from July when I was taking 225mcg a day were T4 20.5 pmol/L, T3 6.0 pmol/L and TSH 0.06 miu/L. So my T4 was clearly over range.

    My results from this month having been on 200mcg daily are T4 23.2 pmol/L, T3 5.9 pmol/L and TSH 0.03 mui/L. So despite taking less Levothyroxine my T4 as gone up. Surely it should have gone down?

    I had to get the results from the receptionist so I didn't have a chance to ask the doctor about it. Does anyone have any ideas as to why my T4 would be going up when my dose is reduced and T3 and TSH have gone down?

    Hope that makes sense. I'm still a bit perplexed by all of this!

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