A few questions :-) Hypothyroidism and difficulties with doctors

Hi everyone :) Im new to this!

Very briefly, Ive been on thyroxine since I was 12, and my dosage is set at 250mcg pday. Now problems seem to have started since I had my daughter 5 years ago.

Firstly back then I needed 200mcg, so that's had to be increased, since then, despite the same stress levels, the same food, and activity levels (to be honest Im far more active now) I have been gradually putting on weight. Ive always struggled with getting rid of weight, but at 11 stone 10, and 5ft 9 I always thought I was ok. It was 6 months ago I hopped on the scales, expecting to find roughly the same weight and found 12stone 8. yes I know its not alot of weight in reality, but when you know yourself you've not increased anything but more regular exercise, it seems strange.

So I upped my dosage, myself which, is naughty I know but I did it anyway. I upped it to 300mcg. that was three months ago and now I back to 11stone 10, my weight hasn't moved and I feel as normal as anyone with a thyroid condition can get.

SO I have a blood test. Shows zero production of tsh, and I believe my t4 was high?

So IM back down to 250, and a blood test due in 3 months. that's great except I again will have no periods, (sorry forgot to mentioned this had happened too) and put on weight oh and end up with zero energy and feel tired all the time, but if the truth be told, you tell these things to a doctor, and all they see is the numbers.

heres my problem,

all these little numbers and this is wrong this is right, this is where you should be etc is getting me very confused...

here are my questions and any help would be very grateful!

Does being taller and therefore bigger than an average female affect where my levels of thyroid hormones should be?

What are the normal ranges?

If my thyroid is working properly/compensated for do I need to produce tsh?

Can levothyroxine loose its effectiveness over time (bearing in mind Ive been on it for 14 years!)

How can I get a copy of my medical records/ blood test results for comparison?

how many others feel like doctors really don't know that much about thyroid issues, and are just reciting from a text book that is rather outdated??

and lastly How long does an increase/ decrease in dosage take to make an effect on both your levels and how you feel??

Sorry this is so long, but maybe some of these answers will help others :-) many thanks. xxx

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  • Hi and welcome - I'll have a go at answering some of your questions so here goes.

    Cant answer your first question as I don't know (not a good start)

    Second question - every lab has different ranges but here is a link from the main thyroiduk website that explains the ranges and gives you a guide as to what they should be. thyroiduk.org.uk/tuk/testin...

    Third question - which to be honest I don't really understand as your tsh level is telling your body and your GP what should/should not be done. As I said I don't really understand this one.

    Fourth question - Levo can loose its effectiveness for many reasons but I assume you are asking "does your body become immune to it so you need to take more", I have never heard of this but I have heard of vital vitamins being low, which will stop your medication working properly. I have also heard of gut issues that will do the same.

    Fifth question - It can be as simple as asking your GP's receptionist for a print out of your blood results every time you have a test done but if you want copies of records that are older I would read this link ico.org.uk/for_the_public/p...

    Sixth question - Lots of us on here are of the opinion that a good GP holds the key to good treatment. GP's are not thyroid experts and struggle to understand what this illness involves, some GP's don't bother to understand what this illness involves whilst those who do have their hands tied by the NHS as to what treatments they can give their patients.

    Last question - (how am I doing so far.lol) I can feel the effects within a couple of days if I increase/decrease my thyroid medication but GP's will tell you 6 - 8 weeks which is why, when you are first diagnosed, blood tests are taken within this range.

    Hope that was o.k. Sorry about the ones I couldn't answer but maybe someone else will fill in those.

    Moggie x

  • Not a lot to add to what Moggie said.

    1) I don't see why size should affect the level of hormones you need to feel well, although I could understand if it affected the amount you had to take to achieve those levels.

    2) At my lab the normal range is 0.4 - 5.0, but they vary from lab to lab.

    3) Not sure on this one, but if your level of T3 is appropriate or you are taking a treatment with T3 in it, then your TSH will be low.

    4) It's possible you have developed resistance to thyroid hormones or you don't convert effectively from T4 (thyroxine) to T3 (the active hormone your body uses)

    5) You're entitled to copies of your test results. Just ask the receptionists at your surgery. They might have to ok it with the doctor. Mine know now to print them out for me.

    6) My personal view is that not only do doctors not know much about thyroid problems, the big problem is that they either don't want to know or are resistant to learning. Possibly because if they stray from the path that is "acceptable" to the Society of Endocrinologists they risk being struck off, so it's easier to pretend that the patient is the problem rather than acknowledging that the patient has a problem.

    7) Can't really answer that as I take loads of things in addition to thyroxine.

  • Thank you so much for your answers so far! Ive never really talked about having hypothyroidism, normally if I tell someone what ive got they say what on earth is it!

    Following on from Rosetrees, is there a test to find out if the t4 is being converted to t3?

    I remember being under two endocrinologists as a child, and since then it seems to have only gone downhill.

    The last doctor, despite me explaining why I had upped my dose (and considering Id been into the doctors to explain what Id been going through,) she acted as if id done something wrong and was rude to be honest.

    Luckily my gp surgery allows me to see several different doctors. But I think il be having a look at the list of doctors on thyroid uk and see where I get.

    Its so hard sometimes to stay not frustrated with the amount other conditions get talked about, and not that any of them are any worse or better than a thyroid condition, but thyroids are important too! all the publicity, knowledge and research into diabetes, shouldn't the same be ploughed into the thyroid??

  • Before you start paying out for private doctors I would ask you GP for a few tests first. When I said that vital vitamins can stop your meds working properly I really did mean it. If you are low in B12, Iron, Ferritin, VitD or folates this will have a big impact on how your body uses (or more to the point doesn't use) your thyroid medication.

    Since finding this site and learning all I can I have had bloods which showed I had low VitD, low'ish B12 and very low iron and ferritin. Since correcting these, especially the iron, I have had to reduce my meds twice as I kept going over medicated. So before you start spending money on private endo's ask your GP for these vitamins to be tested as well as a FT3 and FT4 test (see link I sent you for what these tests are for). If you take your thyroid meds in the morning and are having your blood test in the morning don't take them before the test as this can give a false reading.

    I also mentioned gut issues interfering with thyroid medication - there are lots of issues in the gut that can, and do, stop your thyroid meds from being absorbed properly. From wheat intolerance to general gut health. I am now due to see a gastro because many of my vitamins where low, which is showing that I am not absorbing vitamins and minerals from my food so what chance has my thyroid meds got?

    As you can tell it is not as simple as popping a little white pill and all will be better - that little white pill depends on a lot of other things.

    No people who do not have thyroid issues don't have a clue on how we feel, we look o.k. but god hasn't she put on a lot of weight (sometimes that is the only visible sign) and that is why forums like this one is so important for information and support, there's nothing better that talking to someone who has experience of what you are going through and how you might be feeling.

    Ask your GP for the vitamin tests I have suggested, post the results on here (in the questions section) for people to comment and advise and then you can decide where you want to go from there.

    Moggie x

    p.s. Just tried to go into the link I sent you regarding thyroid tests but it didn't work so this link will take you into the main thyroiduk website and on the left you will see "about testing". thyroiduk.org.uk/tuk/

  • wow! all i can say is thank you! what an amazing detailed response! i will be booking an appointment to see my docs next week fingers crossed, hopefully i won't get any raised eyebrows of...she's just a patient why does she think she knows more...

    i wonder if gall bladder removal changed thyroxine absorption?? had mine removed in 2009. anyone else in the same boat?

    here's something else i found out, thyroid supposedly can cause gall stones??!! any one else heard of this?

    once again thank you for such brill responses!xxxx

  • Why don't you ask a question regarding gall stones and thyroid illness and see what response you get - I know nothing about this so I cant help. Make sure you put it in the questions section or it might get lost in the posts section, which is where we are now.

    Glad you found the info you received helpful and good luck at the GP's next week - let us know how you got on as feedback is always good.

    If you want to answer someone use the "reply to this" button on their reply and they will get an email alert to say you have made further contact - it just stops people missing answers or further question.

    Moggie x

  • OK I'm not following your answers around Moggie, honest (!), but if you don't have a gall bladder you will eventually become B12 deficient, because your enterohepatic circulation is broken.

    b12deficiency.info/

  • So Amanda would be best to have a B12 test to see if this could be causing her problems and why she isn't doing to well on her levo. Maybe she needs to ask her GP the question and see what reaction she gets.

    I don't mind you following me around hamster, it just shows that both of us are very active on the site at the moment.lol.

    Moggie x

  • Hello ,I had my gall bladder removed in 2005.I wasn't the so called typical person to have gall stones but had trouble through 2 pregnancies with it then a couple of years later my mismanaged underactive thyroid became autoimmune! I have always thought there must be a link , I too would like to know more. I still get digestive problems that way , just had my B12 test done ,still awaiting the result , maybe interesting.

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