I've lost me

Hi my name is Carol I'm a 55 year old grandma to 10 and mother of 4. I've always been very hands on with my grandchildren and had loads of energy, that was until 3 years ago when I started to feel really exhausted along with many other symptoms. After 2 years of back and forth to my doctor ( whom I'd rarely visited before) I was finally diagnosed with an underactive thyroid. I was basically given given levothyroxine and told I'd feel the difference. Yet here I am a year later and I feel worse. I moved to a different area went in and registered with a new doctor who I told that I wasn't feeling any better. He suggested blood tests to see how my levels were. 1 week later I rang for the results to be told everything was fine no further action required so plodded on. Then 2 weeks ago I couldn't even get out of bed for 4 days, my symptoms felt worse I just felt destroyed so made another visit to my doctor who consequently told me that my last blood tests had shown my levels weren't right??? I explained I had called for my results and had been told they were fine etc so he ordered more blood tests. I told him I work full time in an autism unit and he immediately began to blame my symptoms on stress!! I tried to explain I had all these symptoms before I started working there. It was as though he was trying to tell me my symptoms were nothing to do with my thyroid. I just feel as though I've lost the old me, I struggle to play with my grandkids now and feel like I've aged 20 years in a year. Incidentally I rang yesterday for my blood results and guess what they said yep everything is fine no further action required! So I have insisted on an appointment today with the doctor. My problem is no one has ever sat and explained this whole underactive thyroid are my symptoms to do with it or am I loosing my mind? I have constant pins and needles in my hands I suffer dizzy spells my hair is falling out I'm constantly tired my joints are painful. I get half way through a sentence and forget words. Any advice as to how I can approach my doctor so he takes me seriously please?

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25 Replies

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  • without your actual results we have trouble helping

    its utterly vital that tests for

    thyroid antibodies

    TSH

    free t4

    free t3

    ferritin

    folate

    b12

    vit d3

    are all done as all are interconnected insist on the results and reference ranges you are legally entitled to them

  • Thank you I will ask today

  • Poor you It's horrible when gp tell you that nothing is wrong when you feel so I'll, all I can say is your symptoms sound very much like mine and I'm hypo could also be vitamin deficiency as these tend to go hand in hand with thyroid problems as realyfedup said we need to see bloodtest results to really be able to help. it's your right to have them so don't let them fob you off. For some reason gp don't like to diagnose you with thyroid problems though don't know why, don't let them make you feel like it's all in your head then give you antidepressants.good luck.

  • Thank you x I have been diagnosed with underactive thyroid and am currently on levothyroxine. My problem is I'm not feeling any better with the levothyroxine so my doctor seems to be blaming other things. I'm only on 50 Mcg. My last results showed the levels were still not right yet when I rang for results I was told no further action required. It was only another visit to my GP that I found out they still weren't right. No one seems to want to explain the whole thing to me, should I change gp? I worry about starting again with a new gp. I just feel so lost and swallowed up in it all. I'm back today at 4.10pm and will ask for a copy of my results.

  • Docs rarely explain the detail - check out the link I have posted below for you. Sadly we have to read and learn for ourselves - taking control of our own health is the only route to wellness - unless you have a well informed or cooperative GP .... they are as rare as hens teeth :-)

    Changing GP's is rarely the answer. Good luck this afternoon .....

  • Thank you x

  • If your Docs are proving to be uncooperative - many are - then you could have a Home Testing Kit sent to your home. Many people here do :-) The link is below and is from the main website of this Forum Thyroid UK. There you will find so much information to help you understand the thyroid.

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

    Go for Thyroid 11 which will include the FULL Thyroid Testing and the Vitamins and Minerals that will help you on your journey to wellness.

    Stick with this forum and you will be sorted in no time :-)

    Will look out for your results. So you get better coverage - pop the results into a new thread ....

  • I know it's hard for us to help without results, but why not be brave and ask to trial an increase. What do you have to lose? If your results are such that's it's out of the question, doc will simply say so.

    Also, it may be that you took Levo before test and people on here recommend test 24 hours after Levo. Also earliest possible test of day.

  • Thank you x

  • A dose of 50mcg Levo is not enough for most sufferers of hypothyroidism.

    To explain a very few of the things that are likely to be going wrong for you ...

    1) Doctors don't care about symptoms, and in many cases don't even know what the symptoms of hypothyroidism actually are. All they care about are blood test results.

    2) Blood tests for most things usually give a test result and a reference range. So if the reference range for TSH (Thyroid Stimulating Hormone) was 0.5 - 5.5 then, to many doctors, a test result of 5 is considered to be as good as a test result of 4 or 3 or 2 or 1. But to the patient there are worlds of difference in how they feel with a TSH of 1 and a TSH of 5. (They would feel much better with a TSH of 1 than they would with a TSH of 5, and may not feel well until their TSH was 0.5 or less.)

    Since reducing the TSH from 5 to 1 or lower would require a higher dose of thyroid meds, and since doctors are strapped for cash, they refuse to raise dose. They aren't supposed to use financial issues as a reason for keeping someone ill (but they do it anyway). But they feel perfectly virtuous about keeping the hypothyroid patient ill because TSH = 5 is in the reference range and so must be normal. Any patient who says otherwise is just considered to be a hypochondriac and a whinger who should be dismissed. After all, they were taught at med school that hypothyroidism is a simple and non-serious illness that mainly affects women - and they all know that women are nothing better than lazy whingers...

    3) Some doctors do pay attention to reference ranges for TSH and they aim to keep the patient dosed so that their TSH is mid-range e.g. about 3 with a reference range of 0.5 - 5.5. The problem with this is that this is not normal. Most healthy people with no known thyroid disease have a TSH around 1 - 1.5 and people who are on Levo generally need a TSH lower than this to have a hope of feeling well.

  • But don't despair! There are ways to give you your life back. It might not happen by this time tomorrow or this time next week but it can be done!

  • On my last test my TSH was 9 so is that too high?

  • Oh wow! That is much, much, much too high. No wonder you feel so awful!

    You should have had a raise in dose. And you might have needed another couple of raises of dose after that.

    If you are being told a TSH of 9 is normal then you really need to change your doctor.

    Normal procedure should be :

    1) Start patient on levo.

    2) Six weeks later give blood tests. If results are not optimal raise dose by 25mcg.

    3) Six weeks later give blood tests. If results are not optimal raise dose by 25mcg.

    Keep repeating until blood test results look good and patient's symptoms have been eliminated.

    Get hold of copies of your blood tests (with the reference ranges) as soon as possible then post them in a new post and ask for feedback. Get results of thyroid tests and nutrient tests too.

  • Wow!!! I wish there was a 'fainting' smiley!

    I don't understand how a GP can say a TSH of 9 for a treated hypo patient is 'fine'. He is ignorant, negligent and should be retrained.

    A lot of professions have CPD - Continuing Professional Development - maybe the medical profession doesn't :(

  • I have an appointment tent at 4.10pm but feel more confident after all the replies to go in and insist he does something thanks to all of you xxx♡

  • Good luck. Don't let them take any blood for testing this afternoon. Blood needs to be taken at the very first appointment of the day, fast overnight (water only) and leave off Levo for 24 hours.

    Let us know how you get on.

  • My TSH was 11.1 today at the doctors, he's doubled my dose of levothyroxine and I apparently have a severe vitamin D deficiency. Yet he still says my symptoms are nothing to do with my thyroid :(

  • Birchy1961 What dose of levo have you been on? Increases should be in increments of 25mcg, re-test after 6-8 weeks, another increase of 25mcg, another re-test in 6-8 weeks, and so on until symptoms abate and you feel well with, of course, your TSH and free Ts wherever they need to be *within* their ranges for you to feel well.

    So you have a severe Vit D deficiency. What is the result? What has he prescribed? I have a feeling it won't be enough and he won't have told you about the important co-factors that are needed when taking Vit D because he won't know about them.

    Your pins and needles and dizziness are probably due to low B12. Has he tested that? Or your ferritin?

    If not, just get everything tested privately with a fingerprick test from Blue Horizon and members will advise

    bluehorizonmedicals.co.uk/T...

    All our vitamins and minerals need to be optimal (not just in range) for thyroid hormone to work properly.

  • I was on 50mcg and he's put me straight up to 100 on the levothyroxine and he's put me on cholecalciferol 3,000 units

    He also told me none of my symptoms are anything to do with my thyroid it's all to do with vit D deficiency. I did ask him for a print out of my blood test and he said I could collect them on Monday. But do you know what's really really upset me I told him I didn't feel well enough to go to work as I work in an autism unit which can be quite demanding so he wrote me out a sick note for a week. It was only when I got home I looked at the sick note and saw he'd put tiredness down for the reason I'm unfit for work!! I've been in tears since I got home and feel really belittled :'(

  • Oh Birchy, don't be upset by what he's written on the sick note. At least you've got a week to rest.

    If you have a bad reaction to the increase, drop it down and take an extra 25mcg instead of the extra 50. That's the way it should be done.

    Did he tell you to re-test in 6-8 weeks. That's very important.

    As you've been given 3000iu D3 - and I presume that is daily - then I imagine your level is less than 30nmol/L. If you were buying your own supplements the recommendation would be for a loading dose to start. Post the results when you get them.

    The important co-factors for Vit D are here - vitamindcouncil.org/about-v...

    Vit D aids absorption of calcium from food and K2-MK7 directs it to bones and teeth rather than arteries and soft tissues. D3 and K2 are fat soluble so should be taken with the fattiest meal of the day. Take your D3 four hours away from thyroid meds.

    Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening - naturalnews.com/046401_magn...

    You really need the other nutrients tested - B12, Folate and Ferritin. It's very common for us Hypos to be low in them.

  • what !!!!!!!

    TSH of 9.0 its totally hypothyroid

    your tsh should be 1.0 or below

    free t4 should be around 19

    free t3 around 6

  • Was 11.1 on today's blood tests :'(

  • even worse then you are very clearly undermedicated and not converting correctly the levo

  • YES! Aim for 1 or just below.

  • Birchy, just came across this post, hope you have had some joy now that your Levo was doubled, your doctor sounds like mine, absolutely useless when it come to the thyroid.

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