Help! Been feeling steadily worse and some days find it hard to do the simplest of tasks but doctors will review in 3 years

Here are my blood test results

Sept 2012 4.9 U 0.35 - 4.5 (no print out of test)

May 2013 TSH 7.0 miu/L U 0.35 - 4.5 (hi)

Free T4 11.1 pmol/L U 11-24

Serum Cholesterol 6.1 mmol/L U 3.5 -5.2 (hi)

Serum HDL Chol level 1.03 mmol/L U 0.9 -2.1

Serum HDL chol ratio 5.9

Serum Triglycerides 4.8 mmol/L U 0.5 -1.86 (hi)

TPO to follow

Results over phone which are normal will get a print out on Monday.

Both my sister age 52 has underactive thyroid and my mother. Also have a niece one with ME another with MS and my sisters daughter has SLE Lupus.

I have been a healthy person up to last year my periods stopped (haven't seen one since)

Very Active enjoying many sports but now have gained weight very quickly in the last year 2 1/2 stone since xmas with watching what I eat. Also dieting but of course not loosing at all.

Also many days find it hard to even walk up the road but I do push myself. Down to only working 3 days as can't manage anymore with trying to care for my family.

Should I be on thyroxine ? Doctors seem to think not so do I ask for further tests in other area's. I have been advised to go on HRT for 5 years does this seem right?

Andrea x

9 Replies

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  • Hi Andrea

    Just wanted to let you know that your question caught my eye as I too feel the same and just wanted to send you some moral support. Then I saw your results!!!!!

    Your TSH is too high, free t4 is on the floor. Your cholesterol is high ( a hypo sign) and you have symptoms. I can't understand why your doctor is fobbing you off with a review in three years. Please do not accept this. They are no doubt waiting until your TSH goes over 10 which is ridiculous!!

    You may need to find another doctor.

    Some of the experts on this forum will be along soon to advise you. Hang in there!!!

    Best wishes

    Carolineanne x

  • Thank you Caroline I thought I was going mad I am 49 but feel so so much older. This has only happened in the last year. My feet are swelling through the day as work on my feet but must finish work at around three as body seems to stop working (like you're getting flu). Luckily I run my own business so can finish. My children don't understand that I can't do so much with them (10 and 11) there again lucky they are older and do a lot themselves. I do take pain killers which does help for a few hours that may help my aching joints and muscles but it doesn't do anything for my utter brain fog

    .

    I have been given water tables for my legs but doesn't really do anything I have noticed lately it's more on the right leg and that goes up above my knee sometimes. I do rest in the evening but must keep getting up as can't move, so walk round the house then sit again with feet up

    I know there are still so many people worse off than me and my heart goes out to those people I just panicked when she mentioned 3 years.

    Thanks for listening and yes this seems a nice forum for people with similar problems it really does help.

    I haven't told my doctors all of my symptoms cause there seems to be so many I think she would think I was losing the plot lol xxxx

    .

  • Oh bless you - I hear you about the joint and muscle aches. Yep the brain fog too!!

    Well your Tsh was over the range last year and with this latest result I cannot understand why your gp has not started treatment. Some doctors like to wait until you go over 10 which obviously keeps you suffering. I don't know why he wants to wait three years!!! It will be interesting to see if you have antibodies. My Endo would treat at around 3 with antibodies.

    It might be an option to see another gp in your practice if that's viable. Or if you feel strong enough to fight your corner with this one ( difficult I know when feeling poorly) you could point out that your levels are over the range, most peoples Tsh needs to be at around 1 and ft4 at upper part of reference range to feel well. Tell him you want to be treated on your symptoms and it would not be unreasonable to try a trial of thyroxine to see if you improve. I think that if it was me and he refused I would ask to be referred to an Endocrinologist as many of them know that your tsh is too high.

    You can always change your doctor. You can email LouiseWarvill admin for a list of good Endos ( nhs and private) if you don't get anywhere.

    Also, as you may have read on here you should get your levels of vitamin b12, ferritin ( stored iron) and vitamin D tested. Deficiencies in these can result in fatigue, muscle and joint aches. I had terrible aches and found out I was vit D deficient. Supplementing helped a lot.

    Keep your chin up love, and keep reading and ask lots of questions. This site is great.

    Best wishes

    CA x

  • HI, you poor thing, what a way to be treated! Go back or change GP and list the symptoms in writing for the GP. Take a strong friend, husband etc to explain what you were like before and photos if you have them. if you're re-tested make sure the blood is taken as early as poss in the morning as your TSH will be higher. Take your basal temperature (first thing on waking), you may find this is low and this is another sign that is harder for GP to ignore, especially if your husband/partner does this to prove your thermometer is not at fault!!!

    There is a lot of info on this site about how lower TSH is treated in the USA and Europe which may help your case.

    Good luck, please let us know how you get on.

    Agree with all the other advice.

    Mary

  • Meant to say, I wouldn't try HRT just yet. I had an early menopause brought on my untreated hypothyroidism.

    Mary

  • Hi.

    I'm shocked by your story. You must push for better service.

    With a TSH of 7 and very low T4, you are hypo. If I waited for three years like this, I'd be disabled. Please go back to your GP and if you don't get support, change your GP.

    My understanding of these blood tests and ranges is that if your TSH is over 5 and you have symptoms (clearly you do) then you should be offered a trial of levothyroxine.

    My levels/symptoms on diagnosis were similar to yours and I was becoming really ill - Hypothyroidism does not get better without correct treatment and management.

    The good news, now I'm on levo (now 50mcg) I'm extremely well again. My 'small' dose has given me back myself and my life.

    Please ask for better service from your GP...

    Good luck

    Liza

  • I can't believe that your GP has said a review in three years. Did you mean 3 months? Yes TSH far too high.

  • Hi just to say thanks for all your support.

    This was an over the phone conversation and because my TPO was normal (will get the print out on Monday) she definitely said no need to review for 3 years. Thats why I panicked and said I can't be expected to continue like this for another 3 years, I actually broke down on the phone which is something I wouldn't dream of doing and told her I have made an appointment for Monday cause the symptoms are getting a lot worse and more of them.

    It's been the nausea, dizziness in the morning till about 11 and the muscle pain. She did mention something about six months but can't remember what that was for perhaps she changed him mind but will all be clearer on Monday.

    Just remember something else she said lol Because of the result of the TPO it's very unlikely that

    it will progress and get any worse. So is she trying to tell me that my TSH and Free T4 will right itself? That would be great if true. I am just very confused and hopefully it doesn't boil down to money? xx

  • Jkust to let you all know that have been prescribed 25 mcg of Levothyroxine today on a trial period. At least its a step forward. They still wanted to put me on HRT but this site gave me the know how to fight my corner so a big Thank you xxxx

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