Please Help: Hi everyone, I was diagnosed with... - Thyroid UK

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Mistie84 profile image
14 Replies

Hi everyone, I was diagnosed with hypothyroidism 3 years ago and have been on 50mg a day levothyroxine since then. I have admittedly forgotten to take my meds on a handful of times, but usually I am very good. My doctor says my levels are normal after every blood test but I don't know what "normal" is.

I turned 30 this year and I have 3 children, so I know I am getting on a bit but I'm just so tired all the time, I don't want to go and party like a teenager or nothing but to simply be able to make it past 9 pm without forcing myself to stay awake would be nice. Most days after sorting the children out and working I just want to collapse, I have spoken to my gp about my weight because although I don't "exercise" at all I feel I am active throughout the day to at least stay the same weight but I just keep putting it on. I walk my children to school everyday which is up quite a steep hill and takes around 10-15 mins there and then the same back so 20-30 mins walk am and the same pm to collect. Then if I'm not doing housework bending up and down picking up toys after my 2 year old, up and down stairs as our washing machine is in the kitchen and the tumble dryer is upstairs (small kitchen no room downstairs for tumble), I then work with my husband fitting garage doors!! Everyone I know has said they have no idea how I have time to put on weight!

I am at my wits end with my weight I have gone from a size 12 to a size 20 in 3 years and I the only response from my gp is to exercise but I just don't have the time and the energy and quite frankly I think I am active enough to not have to spend hours a week at the gym.

Any comments and help is greatly appreciate.

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Mistie84
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14 Replies
galathea profile image
galathea

Hi,

Its difficult to comment without seeing what tests the doc has done and what the numbers are, ( you are entitled to the results if you ask for them). But 50 mg is a starting dose. You should have been tested every six weeks and your dose increased until you felt ok. I would go back to doc, or write a letter stating that under the 1998 data protection act, you are entitled to see any information and you would like to see the results of all thyroid function tests which have been undertaken in the past three years.

In addition to thyroid results, you need results for b12, iron, ferritin and d3.

If any of these are low it makes you feel more fatigued.

Xx. G

humanbean profile image
humanbean in reply to galathea

And include folate testing too...

in reply to galathea

Mistie84,

Welcome to our forum and sorry to hear that you feel so unwell and tired.

Your symptoms sound as if you are undermedicated and so perhaps with an increase of Levothyroxine, your life would feel easier.

As galathea has explained above, blood test results from your doctors are vital and will help determine what is the problem.

If you have recent tests results you can post them in a new question, complete with ranges (numbers in brackets) and members will comment.

If you don't have recent test results, you will need to ask your doctor to test your thyroid hormones TSH, T4 and T3. Also ask vits and iron listed above as difficiencies are common in people with thyroid issues and required for meds to work.

Lastly, ask to be tested for thyroid antibodies TPOAb and TGAb to ascertain if you have Hashimotos Thyroiditis.

flower007

Heloise profile image
Heloise

That is a starter dose for most people and it is usual to advance the dose until your TSH measures around 1.0 and T4 near the top of the range since that is what levo is (T4). The T4 should then become free T3 which is what raises metabolism and also burns calories. They figure hypothyroidism causes 17 calories less per hour burned which adds up, doesn't it? Actually exhaustive activity only makes it worse as it uses up what little hormone you have. Same with dieting.

Can you find out your past blood test results and ask if they have changed. There is no reason for you to put up with any of those symptoms! If your blood results are fair, you may have to look at your adrenal function.

stopthethyroidmadness.com/m...

RosF profile image
RosF

Hi

Ask your GP to adjust the dose! and remember that Levothyroxine doesn't work for everyone - I found natural thyroid, which contains both T3 and T4 (prescribed through my lovely private doctor) worked much better for me. In fact, when she then added Levothyroxine for a while I got bad acne, which was very depressing, and fortunately she's now taken me off it.

Don't give up - at your age you shouldn't be feeling like you are and deserve to have the right treatment!

curlycurly profile image
curlycurly

Hi everyone I have the same symptoms as mistie84.Have put weight on and finding it very hard to loose.Have never been tested for T4 T3.I even bought my own B12 to help me.I go to the doctor and feel he doesn't really know about Thyroid symptoms apart from a blood test.Even that is well over 6 weeks.I ache my hair falling out.Only strands but can feel getting thin.Dry skin feeling very down .Should I have a private test done.Advice please.

Mistie84 profile image
Mistie84

Thank you all for your support its very comforting to know that I'm not going crazy, I will book an appointment for new bloods with all that you have mentioned. I sincerely appreciate you all taking the time to help me I really do!

in reply to Mistie84

Mistie 84..I went on for 10 years on 50 mcgs Levo.......all the time complaining about my lack of energy and all the time being told by my GP that there was nothing wrong and my Thyroid was " normal "

Sometimes when I look back and realise the truth I could scream.

How you are coping with three young children and working as well while feeling like that I do not know.

Please take all the advice you are getting here and I hope you are soon on the road to feeling well and coping with all your responsibilities xx

in reply to Mistie84

Welcome Mistie!

It's fairly apparent that you're under-medicated. And at 30, sweetie, you're nought but a chile. And this is not how it's supposed to be - so time to take up cudgels on your own behalf. I'm afraid we all have to become our own experts, so begin to inform yourself from this forum and Stop the Thyroid Madness forum and book and even Wikipedia, bit by bit.

When you next see the doc about this take a list of your symptoms, a list of what outcomes you want, someone with you (they aren't quite so keen on patronising you when there's a witness) and don't leave until you get what you've asked for. The first thing you need is an increase in meds, probably incremental over several months.

Mention when you're there that you'll want a copy of the results for your records. These days they usually don't bat an eye (or charge). But nor, as you've discovered, do they offer them routinely. Post the results here with ranges when you have them, and hopefully before your next appointment, and the clever folk here will be able to help you interpret what they say.

'Normal' and even 'within range' and 'satisfactory' mean little - especially from a doctor who knows nothing about thyroids (which is most of them) and is working from a brutally simple chart.

Lucky14 profile image
Lucky14

I was on 150mg and didn't feel well. After help from this group, i asked for my blood results and found i was in range, but my TSH was too high and my T4 too low. So i printed off information that Louise Warville (i think that's her name, apologies if I'm wrong) emailed to me and showed it to my doctor. Who then increased my dose to 200mg and I'm starting to feel much better already. Even managing to shift some stubborn pounds something i haven't managed to do in a long time.

Good luck

eeng profile image
eeng

And in case you haven't already been told, have your blood test first thing in the morning, without having taken any medication for 24 hours beforehand, and without having breakfast. Your blood test result will then be more convincing for an increased dose, which is almost certainly what you need.

Most people with hypothyroidism have antibodies which, over a period of a few years, destroy the thyroid, so you need an increasing dose of Levothyroxine (=thyroid hormone replacement) as the years go by. I have increased from 50mcg to 150mcg over the space of 2-3 years. 150-200mcg is a full replacement dose for most (but not all) people.

The blood test result most doctors rely on is the TSH one. Your doctor should be aiming to get your TSH level to 1 or lower by increasing your dose of Levothyroxine. The 'normal range' is something like 0.5 to 5, but this range should be used for diagnosis, not treatment. Most healthy people have a TSH below 2. Don't let your doctor short-change you by leaving you undermedicated.

Hope you improve soon.

Doodie2 profile image
Doodie2

I have empathy with you as I'm in the same boat .. I'm was a size 10 now heading for size 16 in two years ..I feel tired too. I was given iron which gave me constipation then something else for that then something for the bloating caused by the constipation Med .. And so it goes on.. I'm active like you.. And never had a problem with weight on in my life .. I'm 55 . I'm looking at alternative medicine now.. I just want to come off this lot now..

Sue

Eddie83 profile image
Eddie83

A doc telling their overweight patient to exercise is soooo typical and unhelpful. You need to get your test results (at least TSH/FT3/FT4 + TPO/TG antibodies) and post them here.

Mistie84 profile image
Mistie84

I have an appointment next Thursday that's the earliest my go could see me as I am non priority:(

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