High dosage of thyroxine.

[Michelle4267]

Hi I have had an underactive thyroid since just after my son was born in the early 90's I have ranged from 175mcg to 250mcg daily, at the moment I am on 225mcg daily, I cannot shift the weight, recently diagnosed sjogrens and am on Meds for that, can anyone help as to probably why it's a high dosage I have to take all the time. Can I do anything that would help things. Excercise is not an option as I also have M.E and have to rest so much but my food intake isn't that great either due to lack of mobility. Probably very difficult to answer I understand that, could my thyroid just have packed up or something? I know that you are not Drs or even say what it is but any suggestions would be gratefully received. Thanks 😊

[SeasideSusie Remembering]

Michelle4267 It could be that 'conditions' aren't right for your Levo to work properly, or maybe you're not converting T4 to T3 well enough, maybe you're not taking your Levo on an empty stomach or other medication is affecting it.

Do you have any thyroid test results you can post? What you ideally need are:

TSH

FT4

FT3

The FT3 result will show whether you are converting well enough.

Plus:

Thyroid Peroxidase antibodies

Thyroglobulin antibodies

These will show whether or not you have autoimmune thyroid disease aka Hashimoto's.

You can get a print out of your results from your surgery,it is your legal entitlement under the Data Protection Act 1998 so do ask for them, there may be a small charge for printing.

For thyroid hormone to work properly vitamins and minerals all need to be optimal. If you haven't had any tests done these are the ones needed:

B12

Vit D

Ferritin

Folate

If you can't get them done at your surgery then they can be done, along with the full thyroid tests, with a home fingerprick test from Blue Horizon bluehorizonmedicals.co.uk/T...

Post any results, with reference ranges, and members can comment.

Also important is to take your levo on an empty stomach, one hour before or two hours after food, with water only. If you take any other medication or supplements then they should be taken at least two hours away from Levo, four hours from iron, and check other medication to see of there are any interactions.

[Michelle4267 in reply to SeasideSusie]

Thank you SeasideSusie, really appreciate that information, I actually don't have a clue what my readings are, I just get told if it needs to increase or decrease. I take my levothyroxine on an empty stomach and no other tablets because my chemist told me to always do that so it's good I have something right. But I will find out. My rheumatologist said that I have autoimmune thyroid condition but I'm none the wiser, can't understand why it's taken me so long to figure things out. But I want to know now as my life has turned upside down with everything over the last few weeks so it will be good to have as much info as possible. Thanks again.

[SeasideSusie Remembering in reply to Michelle4267]

Hi Michelle4267 A your rheumatologist has I'd you have autoimmune thyroid disease ten the antibody tests may have been one and have proved positive. So you have Hashimoto's but it doesn't sound as though you've had anything explained to you.

This is where the antibodies attack the thyroid and eventually destroy it. Hashi's isn't treated, it's the resulting hypothyroidism that is treated. I don't have Hashi's but many members find that a strict gluten free diet helps enormously to reduce the attacks. Gluten contains gliadin which is a protein thought to trigger the antibody attacks. Keeping TSH very low or suppressed and supplementing with selenium are both thought to be other ways to help reduce the attacks.

Here is some reading about Hashi's which should help:

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

thyroiduk.org.uk/tuk/about_...

A good idea would be to get into the habit of always asking for your test results and keep a record eg Date>Result>Reference Range>Levo Dose>Notes on how you feel>Adjustment to dose made by GP. That way you have a record of how you were on a particular dose and if your GP wants to alter your dose and you know you were unwell with that level of meds you can fight your corner.

When having blood drawn for thyroid tests, always book the first appointment of the day, no later than 9am if possible, fast (water only) from previous evening meal, and leave off Levo for 24 hours. Breakfast and Levo after the blood draw. This gives the most consistent conditions so you always have a like for like comparison for your results, and gives the highest TSH for people who feel under medicated and seeking an increase.

[TupennyRush]

Hi Michelle

Hypothyroid takes time to recover and we all need a slightly different regime. Once you have the results suggested by Seasidesusie you can make a new post with these and hopefully get some good information

I know it's difficult to think about getting results and dealing with them if you're feeling pants due to symptoms. But unfortunately it's the only way

If you have auto immune hypo then going gluten free may help. As with most things it's not a quick fix so if you decide to do this give it several months before deciding if it works for you

I have been on a quest to sort out my weight since I was first diagnosed 3 years ago. I gained over 5 stones due to the time it took to get diagnosed and I really understand how horrible it is to ve walking around carrying such a visible burden. I lost about 1/2 a stone on my first year after diagnosis taking levo, I had a test for the Dio2 gene defect and found that I had it and switched to ndt 2 years ago. This helped me to lose a further stone.

My bloods show that I'm insulin resistant (pre diabetic) because of my weight and I went onto metformin in Feb. I lost a further 5 or so lbs. Just over a month ago I started on the Paleo elimination diet. Results are mixed; you're supposed to feel a great burst of energy a week or so in, I'm still waiting for this to happen. I am having a few issues (tired, cold, hot) but have been told that u may be taking some time to adjust. However the absolutely fantastic news is that I've lost 10 lbs since mid Sept.

My suggestion wouldbe:

1. Get your meds right

2. Think about trying gluten free (possibly straight away) to see if this helps

3. Once you have the meds right have a look at diet etc. Do not try and do this before you have the meds right!

4. Think about having a Dio2 gene test - it has to be private and is available from the Thyroid UK website. If you have this you need t3 within your meds

GPS seem to think once they get you on levo the weight will fall off. Based on my experience this is not true. But, you can feel a lot better and this helps you to move towards addressing symptoms. However it's taken me 2 years to get to this point from being put on the ndt so don't try and change everything in one go!

Good luck