Bones

Hi Everybody, I am new at this but would really like some help here. I don't really know how long I have had a Thyroid problem but I do know I have had a weight problem most of my life. (Hyper) I moved to London 13 years ago and paid several visits to the GP because I was so terribly tired, constipated, dry dry flaky skin, brittle hair and nail, outer eyebrows gone, and all I got told was my thyroid was "Borderline?" What on earth does that mean? After seeing a nutritionist who insisted on further bloodtests, the doctor agreed to put me on to 25mcg Levothyroxine. I felt no improvement and started the battle again for further tests. After several visits and tests and I was up to 50mcg I still felt no improvement but was sure it was my Thyroid. I started doing a bit of reseach and decided to start asking more questions - gp's in this country do no like to be questioned! However, I was put up to 75mcg and I have to say felt a slight improvement for a very short time.

I Suffer very badly with Restless leg syndrome and had to visit the Neurologist, I mentioned in desperation to him that I was having muscle and joint pain and my Thyroid symptoms had got worse but the gp kept telling me my Thyroid was fine, by this stage I was feeling pretty grim. The Neurologist did a Thyroid Function test and my TSHwas 9.2 with a free T4 of 15 (11 - 23)

apparently in this country T3 is never checked?????

The gp put me up to a dose of 100mcg but when I asked what it all meant she said it means "You are safe" No kidding - I was told I was safe. I was also told that I should have another test in 8 weeks. (Funny, I went to book the blood test and was told my TSH had dropped to 5 (I had not had a test - do you think its time I changed my doctor??????

I just want to know what questions to ask and what to insist on knowing, We only get 10 minutes with the gp because of NHS which I am very grateful for but I need to know what questions to ask in that time and if I am entitle to being told what is going on with my thyroid.

I hope someone can give me some advice. I do feel ill and so want to get better.

27 Replies

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  • As a start you should request, via the Practice Manager, copies of your blood tests, with ranges. There may be a small charge and you're entitled to receive these. Post them up here for members to comment.

    There will be other blood tests that you should have carried out, getting the NHS to do it is another matter. At the very least they should do TSH, FT4, antibodies, ferritin, vit D. Check on the main page for details of testing:

    thyroiduk.org

    Anything the NHS won't do you can have done privately if you're able to afford that.

    Many of us here have discovered that GPs know very little about thyroid disease so you need to educate yourself as much as possible.

    Hopefully someone will know about restless legs.

  • Before you even see the gp get a copy of the actual tests already done

    piling on weight is a HYPOTHYROID SYMPTOM not hyperthyroid

    I suspect that like millions of other hypo thyroid patients your vitamins and mineral levels are trashed

    Insist on tests for

    Thyroid antibodies

    TsH

    Free T4

    Free T3

    Ferritin

    Folate

    B12

    Vitd3

    all are interconnected and vital but whatever you do NEVER NEVER NEVERtake your thyroid meds in the 24hrs before a test

  • You can also put on weight when hyperthyroid...... I did

  • Hi I'm not Shaw if this helps but I have a thyrode problem to very smiler to what your saying but after years of feeling ill I ended up in hospital and referred to London as my thyrode has to be kept below the average levels my t4 because if not I get angioademia I swell up maybe worth asking about as my white blood cells attack my thyrode I'm on 200mg a day and still very over weight

  • Amylouse thank you for your reply. Please tell me, how did you eventually end up in hospital, what made them wake up and smell the coffee? When you say you swell up, is it like water retention, or wind, and how long does it last. I swell up so much that I have to undo my clothes and it is so uncomfortable. I am putting on weight all the time and so so hungry and my mind is a fog. I also have muscle and joint pain along with the other symptoms.

    To get blood tests here privately costs a lot of money but I will have to do something - so much for NHS

  • Hi ya sorry should have been more clear I came out in a rash all over felt faint my body swelled up like a allergic reaction my whole body I looked like the nutty professor my white blood cells are always fighting my thyrode I only found out by ending up in hospital twice then they sent me to London to find out what was causing this found to be the above now I no the signs if my leaves are normal I start to swell so they have to keep them lower than other people I'm not 100 percent Shaw what one they keep low but I try find my letter I have from hospital and get back to you as this was about 11 years ago now I managed to stay out of hospital by bowing when it'screaping up .I ache all the time it's horrible I work twenty hours a week and have just been diagnosed with copd I'm struggling so much at moment and because people don't see a physical thing they don't understand what it's like I have three children too it's mad here

  • Im so sorry you sound as if you are really struggling. I have found sometimes that if you go to the gp and really throw a tantrum and say "PLEASE WILL YOU LISTEN TO ME?" They get quite a shock and agree to test you. That is how I got my last tests done.

    Lets face it, none of us want to feel like this, we are trying to get better and if they did the tests properly we would not have to go back -mmmmm but then they would't get paid would they? They have to have patients!

  • Amylouse, do you mean you have Hashimoto's thyroiditis? That's what it sounds like. And you have to keep your TSH suppressed.

    I think you ought to go and ask for copies of your blood test results, too. You should know a lot more than that about your disease for your own safety. Are you taking thyroid hormone replacement? How much and what?

  • I'm only taking thyroxine 200mg I have never really looked in to it just that the man in London said it has to be kept under the normal no one really explained it and this was 11 years ago and I no the signs now if its not right I have bloods done every three mouths and have done sinceb

  • I have just read up on the name yes that is what they expanded to but I don't remember the name of it but its def that now I have name I can look into more thank you can I ask do you have this then

  • I have Hashi's, yes. And I keep my TSH well suppressed. I can't feel well otherwise.

    You really, really need to get copies of your blood tests so that you know exactly what's going on. What tests they've done and what the results were.

  • thanks cinnamon-girl for the advice.

    Reallyfedup123 - I think weight problems are Hyper - I certainly have a weight problem and I am hyperthyroidism. Thanks anyway, I will get my tests ready, what I have of them but the others I will have to pay for.

  • Boneandco, your high TSH and normal FT4 mean you are hypothyroid (underactive) not hyperthyroid(overactive).

  • Welcome to the forum, Boneandco.

    You could hardly get worse thyroid treatment if you do decide to change GP. Unfortunately, some GPs knowledge of thyroid is very lacking. It depends on your local CCG whether FT3 is tested. Generally, it is not tested in primary or secondary care unless TSH is suppressed <0.03 as indications of hyperthyroidism are being sought, rather than low FT3 in hypothyroid patients. You can order a private FT3 test but there's really not much point yet as FT3 will usually be low while TSH is high.

    Ask for thyroid antibodies to be tested if they haven't already been done to determine whether your hypothyroidism is autoimmune in nature. Autoimmune thyroiditis (Hashimoto's) gradually destroys the thyroid gland and it is the cause of 90% of hypothyroidism. You could also ask for ferritin, vitamin D, B12 and folate to be tested. Low/deficient levels can cause musculoskeletal pain, fatigue and low mood similar to hypothyroid symptoms.

    The goal of Levothyroxine is to restore the patient to euthyroid status. For most people this will mean TSH just above or below 1.0 with TSH in, or near, the top 75% of range which is >19 in your range. Read the link below for more information on hypothyroidism and see Dr. Toft's comments in Treatment Options.

    thyroiduk.org.uk/tuk/about_...

    Leave 24 hours between last dose and blood draw and arrange the blood test early in the morning before breakfast as TSH is highest then.

    In case you are not aware, for maximum absorption, Levothyroxine should be taken with water one hour before, or two hours after, food and drink, 2 hours away from other medication and supplements and, 4 hours away from iron, vitamin D, calcium and oestrogen.

  • Hello Clutter,

    I was not told by the Doctor or Pharmacists when or how to take my medication. I read the leaflet which was quite helpful and I did a bit of research to get the correct times. Thank you for including that.

    Where would I go for these tests, a private doctor, hospital? Sorry but I have only ever gone through the NHS and it is obviously now working. I had to ask for a second opinion on another problem I had which was taking years to sort out. The second opinion cured me in 6 months.

    Thank you again, this is a most distressing problem because you just never feel well and you have no get up and go in you.

  • Boneandco, things will get a LOT better when you are optimally medicated. Symptoms can lag behind good biochemistry by a couple of months but you will start to feel better when TSH is lower.

    You can order private thyroid, vitamin and mineral tests from Blue Horizon and Genova and vitD from City Assays. Finger prick home tests are available from all of them. thyroiduk.org.uk/tuk/testin...

  • Boneandco, There is an HU RLS forum. Click on My Communities on the green HU banner > +Browse communities and type RLS into the Search box.

  • I do have my Restless leg under control now thanks to the Neurologist, he is the one who did the thyroid tests because I was complaining about the muscles and joint pains. My TSH was 9.2 the gps have got it all messed up. They say I had further tests and it came down, I did not, I am due tests now, this is why I need to know what questions to ask and what to insist on.

    My poor husband is beside himself because he can see my weight piling on and yet I don't eat anymore now than I ever have done and he can see I am in pain and I cannot concentrate and I'm losing my hair. The gp will just say "No your TSH is fine and will not give me an explanation for symptoms being worse. I give up I just want to scream. I have so much I want to do but I am just not well enough.

    thank you for your advice, I will do as much research as I can. This site is great I had no idea so many people were as frustrated as me.

  • Boneandco, it's the hypothyroidism causing the weight gain as your metabolism slows down. Gain will slow as your thyroid levels improve but you may need to exercise when levels are good and you feel better in order to shed the weight gained.

    Don't accept the GPs opinion of your results, insist she tells you the actual result.

  • Sorry, shows how foggie my mind is - it's hypo

    I will insist on seeing the results. I have been on very strict diet with no success and I have an hours walk a day or 2 x half hour walks with my dog. I am 66 and also do my own housework (Properly to build up a sweat) and clean my own windows. This is a great effort as I am in pain all the time as well as feeling tired and all the other symptoms.

    I have never come across such an unsympathetic bunch of doctors, they just don't want to know and they get very agitated when you ask questions. I have mine ready and this time they don't have an option, I will insist on answers and seeing the test results.

    Thanks for your help.

  • Bones, You need good nutrition to cope with hypothyroidism and utilise the Levothyroxine. Dieting can be counter productive because your body will hold on to any fat if it thinks it is in starvation mode.

    Certainly ask your doctor questions. She probably won't be able to answer most of them though. Your questions will be answered on the forum though :)

  • Yes, I have noticed that the forum is certainly the best discovery I have made. Thanks to everybody answering my questions I am getting to know how to handle the situation better. The Doctor can't wait to get rid of me most of the time and hey, who wants to be a nuisance to a doctor!!!!!!

    Clutter thanks for the advice on nutrition, I do try to eat sensibly - plenty of fresh fruit and veg on half the plate, and protein and carbs about the same. Low fat, very little sugar and plenty of water. I also try to keep my portion sizes small but my weight just does not shift, maybe a pound one week and then nothing the next week or two. At times I think water is fattening ha ha. But thanks for that.

    Have you noticed lately that low fat is not that good for you after all. The saying is cows don't produce skimmed milk and saturated fat is good for you in small amounts. New book are coming out on natural ly produced food rather than low/no fat because of the added sugar and salt to make it taste nice.

    What do the people with weight problems think that have hypo?

    Thanks again Clutter, I value your advice

  • will do thanks

  • Boneandco, you have to show them who's in charge - and it certainly isn't them! Be polite but firm and tell them what you want, and you just will not settle for what they think you ought to have.

    BUT before you can do that, you're going to have to learn a lot more about your disease. You have to know more than them - which isn't difficult, actually. You can't force a doctor to do anything he doesn't want to, but you can brow-beat them into things. I know! Been there, done that.

    I'm sorry to say that all your efforts to lose weight have probably been working against you. Strict diets just aren't good for hypos. You need to eat at least 2000 calories - but best not to count them, count nutrients, instead. And, doing all that walking and building up a sweat doing house work, is not going to make you lose hypo weight. It just isn't. And it might even make you put on more, because not only are you using up the calories that you need for converting (among other things) but you are using up your T3. And you, it would seem, Don't have enough to begin with. You can't lose weight without optimal T3.

    I agree with Clutter that you need to be well nourished, but hypos often have another problem - as if we didn't have enough! And that is low stomach acid, which means we have problems absorbing nutrients. So, as Reallyfedup said, it would be a very good idea to get your nutrients tested, and supplement deficiencies. We can help you with that.

    One nutirent you're probably very low on - and not much point testing it - is magnesium. And that could be causing your RLS - along with low thyroid hormones. I Don't know what the doctor is giving you for that, but if you can take something natural, it's better than taking some kind of drug, dont you think?

    Hugs, Grey

  • Also, as well as getting all vitamins checked out as others have already suggested, You might find your thyroxine works better if you take it at bed time

    Definitely what ever time you take it make sure no food or drink other than water for an hour before or after.

    thyroid.about.com/od/thyroi...

  • Thanks SlowDragon that is very interesting. However I suffer with Restless Leg Syndrome and I have to take medication a couple of hours before I go to bed. Would it be ok to take Thyroxine two hours after this medication. I have been prescribed Ropinirole and Clonazepam as I was so bad I got no sleep, I had to doze on the sofa all night and often hurt myself falling asleep and falling I was so tired. I had to sometimes stand and rock my legs back and fore and I would bed over the table with my head in my arms and fall asleep and fall. It was no joke so I don't want to interfere with those tablets but if I can take the Thyroxine 2 hours after then I would be happy to try. Thank you

  • Sorry, no idea about interaction with the other medication. Ask for a referral to an endocrinologist - your GP does not sound helpful

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