I was diagnosed with under active thyroid in 2014 after they thought my low blood pressure and heart rate was angina - suffered two years on beta blockers which made me even more tired. Started on 25mg in 2014 of levothyroxine and now on 75mg which was in Nov 2016. Have felt awful for the past few months but it’s a struggle to get the GP to do an annual blood test and pharmacy keep changing brand of levothyroxine. I was on Teva 25mg and activis 50mg daily. I felt sick and my weight has gone from 10st in 2015 I managed to get it down to that in a year from 2014 when I was 12st and now I’m nearly 13st. I don’t eat much and I walk my Labrador daily.
I came off Levothyroxine in Nov last year and felt so much better - no sickness, more energy but no change in weight. I saw my GP in Dec she advised me to go back on it and have a blood test in March. I went back on the Thyroxine and had a private blood test from medichecks and have attached the results. I read that Teva levothyroxine has different ingredients so persuaded my GP to give me a prescription for another brand wockhardt. So now I have 25mg wockhardt levo and 50mg activis - I saw the GP this week she doesn’t want to increase my Levothyroxine despite my results from medichecks but wants to wait another 8 weeks and take another blood test because I had a break in my levothyroxine in Nov. I take vit d supplement high strength, selenium and b6 but she wasn’t interested in the fact my vit d levels are low. I feel totally worn out, depressed over weight gain and am at a loss what else I can do. I take vitamins at night and levothyroxine first thing in the morning and wait an hour before breakfast etc after taking it. Any advice or help greatly received.
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Fergus883782
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I so feel for you - it is appalling that many of us are treated [as we see it] so badly where, for docs, this is how they see 'their' world. We don't seem to matter; don't seem to count within healthcare - there is such a waste of resources going on - and we're left feeling appallingly ill.
I'm hoping someone on here can help you... your endocrinology #'s look way out of shape.
Take care, be well and look after yourself - best wishes xox
Dec 2018? or Jan 2019? - Had private blood tests done, but how many weeks after re-starting Levo?
The results you show are so poor that you might have been or be in some danger of going into a myxoedema coma. I don't know much about coma in relation to hypothyroidism, so perhaps it would have taken a while longer, I'm not sure. Myxoedema coma is an extremely serious life-threatening condition. People with it may end up in Intensive Care, and treatment isn't guaranteed to save the sufferer's life.
One thing is clear though - you are very hypothyroid, and must stay on some form of treatment for life, from now on. Don't take risks with your life.
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There are many possible reasons for you feeling awful on levo before you came off it. The commonest reasons are (in no particular order) :
1) Being under or over-medicated.
2) Being a poor converter - the body has to convert T4 (an inactive hormone) into T3 (the active hormone). Some people can't do it well and need T3 in addition to, or instead of T4. The NHS doesn't readily accept this scenario though, because T3 in the UK is the most expensive in the world.
3) Being intolerant of one or more inactive ingredients in Levo. Experimenting with each different brand in turn and keeping records is the best way of tackling this. Don't mix brands. Instead use a pill cutter, scalpel or craft knife to create the dose you need out of higher or lower dose pills. Until you know which brand you do best on, don't get the brand mentioned on your prescription because you need the freedom to try them all. Once you know, then you can ask for that brand to be mentioned on your prescription.
4) Make sure you get a paper prescription rather than sending it automatically to a pharmacy. Then you can phone round different pharmacies and ask if they have the dose you need of brand X or Y or Z. Don't ignore small independent pharmacies - they often have access to the brands that Boots, Lloyds, Superdrug and the supermarkets can't get.
5) You might be short of nutrients - your folate and vitamin D are poor in the results you've given. SeasideSusie is our resident guru on nutrients and supplements.
6) You might not be taking the Levo under ideal circumstances. Something you need to find out - ask on here for advice.
7) You might be getting tested under the wrong circumstances - ask for advice on here. Time of day, food and drink intake, last time thyroid meds were taken before blood draw are all relevant.
8) Eating enough is essential. What kind of diet do you have?
9) Exercising while you are under-treated is a bad move - it will make you feel worse. A gentle walk or a short, slow swim might be okay, but not much else.
10) If you are on any other medications they might be interfering with your thyroid.
Thank you. I came off levo at start of Nov 18 I was taking 75mg went back on it early Dec same 75mg so was off it 4 weeks then approx 7 weeks later I had the blood test you see - my diet is fairly balanced. I cook from scratch not too many carbs. I do have a sweet tooth though. I do tend to skip breakfast. My test was taken at 3pm. I’m always strict about taking my levo in the morning before a drink - I alway wait at least one hour. I take vit d supplement selenium and b6 in the evening
If the results above were after 7 weeks of being on 75mcg then your doctor needs to increase your dose by 25mcg. He can't use a 4 week gap with no treatment as an excuse to under-treat you for months. If your doctor is that sadistic I would find another one as soon as possible. Try seeing a different doctor in your surgery.
After each dose increase of 25mcg you should re-test after 6 - 8 weeks, and raise dose by 25mcg if results show you are still under-medicated.
Do you have any results from tests done by the NHS in the year or two before you stopped taking the Levo? I wonder if you were very under-medicated all along and that's why you felt so bad.
Referring to brand of Levo, you can find a useful list of all the different brands of Levo prescribed in the UK in this document :
With a TSH of 64 you must feel very, very ill, and must be finding it extremely hard to think. If you have a partner or a friend or relative who knows how you are, knows how badly you are affected by your hypothyroidism and under-treatment, and can be trusted not to undermine you, then take them with you to appointments to act as a witness. Ask them to step in if necessary to make sure you get an increase in your dose.
In future please follow the following protocol for every thyroid blood test :
1) Always book the earliest appointment you can get. You need the blood to be taken by 9am at the latest. TSH varies by times of day and you want to make sure that your TSH result is as high as possible to reduce the chances of getting your dose reduced, and to maximise the chances of getting an increase if one is needed.
2) The day before the appointment take your Levo 24 hours before your appointment time. Do not take your Levo on the day of the appointment until after the blood has been taken.
3) The night before the appointment eat your evening meal as usual. Stop eating and drinking (except for water) roughly 10 - 12 hours before your appointment time. Drink a normal amount of water - you don't want to be dehydrated. You can eat and drink again after the blood has been taken.
I think you need an apt 6 weeks after your last blood test and you need an increase in levothyroxine based on current results. Book an appointment with a different GP in the practice and insist on a dose increase and a blood test in 6 weeks. Book the test yourself with the phlebotemist.
You are entitled to better care but you need to take control and manage your care yourself. Tell the GP clearly what you want and what you need and then insist on following through.
You're unlikely to get vitamin D3 supplements as you are in normal range so buy your own. Get your own vitamin D tests twice a year until your know how much you need to supplement.
I was diagnosed with under active thyroid in 2014 after they thought my low blood pressure and heart rate was angina - suffered two years on beta blockers which made me even more tired.
Any doctor that prescribed beta blockers for low blood pressure and low heart rate is an idiot who shouldn't be practising medicine. What do beta blockers do? They lower blood pressure and lower heart rate - I take them only when necessary to do exactly that.
Did you actually have chest pain/angina? Or did your doctor just make that up? In my personal experience low T3 and low iron/ferritin will cause chest pain. I'm sure there are loads of other causes that I know nothing about.
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Feeling normal after TEVA levothyroxine 
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