Help please?

Hello my name is Julia and I'm 20, I've been having problems with interactive thyroid for 7 years , doctors won't do anything about it even though my results are out of normal range.. I know everything there is to know about thyroid and so I've been telling doctors to do test on my t3 as they would never do it.. But they have finally done it for me and again it is out if normal range saying that I should be receiving medications! Hair has been falling out and I had bold patches I've gained a lot of weight and can't loose it , I get really tired I can sleep all day etc.. I have all the symptoms and results are also out yet doctor won't do anything? Please I've been trying to get help for 7years bow and till today I don't know what else can be done?

Is there a good thyroid doctor I could visit private, im willing to pay for it I just want to be healthy again....

40 Replies

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  • Hi Julia,

    Sorry to hear you are having problems.

    If you post your blood test results including ranges members will be able to offer advice.

    I am sure you will receive some very helpful replies.

  • The big part of the problem is absorption. For various reasons our bodies stop absorbing the hormones that are produced by the thyroid. This could be diet, other medication or a whole list of issues. A good endocrinologist will tell you this. I'm not a doctor so my advice is at a very basic level. May I suggest while your trying to get on top of things, try taking a good multi vitamin with good minerals and vitamins in one. This can aid in your road to recovery, I have seen this happen. A friend has lowered her thyroid medication and lost a little weight just by taking a good vitamin. No promises it will work for you but worth a try. Seek advice from a pharmacist might be a good start :)

  • EvergreenBlue, multivts are a waste of money, for many reasons. You don't get much out of them. It is far, far better to get tested for vit D, vit B12, folate and ferritin, and take the things you need, when yo need it, rather than a bunch of stuff, all bunched up together - some of which cancel each other out, and some of which you really don't need.

  • Hi Julia & welcome.

    So sorry you've had a bad time, but you've come to the right place for advice. Where are you in the world? There are members from all over & as treatment differs in each country it would be helpful to know.

    As lucylocks says it's best to start with your test results & ranges. If you're in the U.K. Just ask for a printout from your GP practice. Then post them on here for advise.

    May I also suggest you Join thyroid uk, where you'll find lots of advise & how to get private blood tests.

    thyroiduk.org.uk/tuk/

    Good luck

    Renni

  • Thankyou for link to site.I can't believe why doctors only tested me for this month's ago.I have fibromyalgia and all symptoms were put down to that even my puffy hands.when I see list of symptoms they are almost same to fibromyalgia. I'm on levythyroxine I don't think I've spelled it properly. Take it morning.a simple blood test told them it was positive. I didn't know it caused all these symptoms. I had thought weight gain .loss of hair and eyebrows and sweats. So glad I came on health unlocked.I first joined fibromyalgia then thyroid and got links to pages that explains all these illnesses I have xx

  • 1881ellie , you're welcome, however you are answering my advise to Juliajulia8. Please start your own thread if you want advise as it's confusing this one for Julia. Thanks Renni

  • Sorry another person mentioned this.is have been told how to write post.I thought when people all replying I could reply to .a know your posting to Julia but so are others so what iam doing wrong,so if I want to reply do i submit reply or write post .thanks x

  • 1881ellie ,

    I've sent you a private message, click the bell at the top to see it

  • Sounds like it's time for you self medicate.

    Post your results & ranges so people can advise.

  • Hi Julie, If I was you I would change my doctor or even surgeries. I had the same problem years ago, the doctors kept on saying I has depression, but I knew I wasn't and I suffered terribly they don't understand the real symptoms we get with thyroid problems and they seem to believe the blood results, lucky for me I was moving house at the time to a different location and thankfully the new doctor took bloods and said it was on the boarder line, but treated me because I had the symptoms for an underactive thyroid and put me on 25mg to start with and within a couple of weeks I started to feel a whole lot better. Don't give up on this and do what your body is telling you. Hope this helps you in some way. Good Luck! Jo x

  • I have just searched internet for you re Endo's and found a site justanswer.co.uk/sip/endocr... It was under the heading Ask an Endocrinologist. The site says type in your question and receive an answer in minutes. Thought it may be worth a try for you. Good luck and take care!

  • What a very odd site that is!

  • I'd really recommend either a functional doctor or a functional nutritional therapist who has experience about thyroid issues. They are much more able to help with these issues. With thyroid there's usually more than just the thyroid happening. Thyroid issues are a lot of the time secondary issues.

  • Louise, the administrator of this site, has a list of private endocrinologists in the UK who are thyroid-friendly. Many endos specialise in Diabetes, and others are just unsympathetic, so if you are going to go private you need to make sure you don't waste your money. This is why people have asked where you live.

    You have done your homework and now you need to take some action, so it's either changing your doctor, going private or self medicating. Good luck!!

  • Just to add Julia, I have just noticed that the site does make a charge of £26 which you only pay if satisfied with their response.

  • Juliajulia8,

    Email louise.roberts@thyroiduk.org.uk for a list of member recommended endocrinologists and private GPs.

  • I'm sorry you remain undiagnosed. I think a change of doctor would be best. When you get a blood test for thyroid hormones it should be the very earliest possible and fasting. If/when you are prescribed thyroid hormones, leave about 24 hours between the last dose and the test and take it afterwards.

    Thyroid hormones should be taken first thing on an empty stomach with one full glass of water and wait about an hour before eating. Or you can take it at bedtime as long as you've last eaten about 3 hours before.

    If you've not had B12, Vit D, iron, ferritin and folate tested ask GP to do these. When you get results, with the ranges, post on a new question for comments.

  • You could also ask GP to test for celiac disease and then (after the test) try a gluten free diet. The symptoms you describe can be associated with food sensitivities, gluten is the most common but there are others. This is a good diet which cuts out the most common sensitivities so you could give it a try:

    thepaleomom.com/the-autoimm...

    Low iron/ferritin can also cause fatigue and hair loss. Aim to get your ferritin level over 80:

    nhs.uk/conditions/Anaemia-i...

  • Apart from the thyroid tablet in morning and my other meds doctor said I must take vitamin D 12.5 which I got from boots.she also put me on high dose of iron 3 a day until level came up and now 1 a day.I tested okay for b12.Julia please get doctor to sort this out for you as it's awful.it was all put down to my fibromyalgia and it wasn't just that,it can also attack kidneys.I knew with head hire thinking and loss of body hair.my underarm has never grew back.I had thick eyebrows that needed plucked every week. I have to pencil them in as they are so things. A simple test is all it takes.xx

  • Ok for B12 according to the NHS is not OK in most other countries - your level must be over 500 to avoid permanent neurological damage. Ferritin (iron stores) needs to be at least 70, and folate about half way up the range. Most adults need at least 2000iu a day of Vit D3 just to keep their vitamin D in the same place when it isn't the height of summer, so I doubt your Boots vit D is really doing anything useful as it's only 500iu.

  • What do you recommend I take of vitamin D.it was doctor told me to take that dose.the iron they gave me x

  • Depends what your vitamin D level was and what it is now. Same with ferritin level. You have to remember that doctors do about an hour on nutrition in 5 or 6 years of study. I'd suggest for the winter, 2000 iu vit D3 (as an oil emulsion or soft gel) taken with your fattiest meal of the day + vitamin K2 45-90mcg to make sure it gets into your bones not your arteries. You need to get ferritin tested again to see if the amount of iron is right - same with B12 and D3.

  • Thankyou,my bloods are all due to get done in November so I'll ask if they can do those ones.x

  • If thye won't do vit D, you can get it done with a home test for around £30 by City Assays (NHS in Birmingham)

    vitamindtest.org.uk/index.html

  • I would agree here dont rush into self medicating. I have had hypothyroid issues for many years and no doc would help me because my tsh was 4.1 at its worst. I have low t4 and t3 and for the past 4 years have been near on my knees with chronic pain. Ive seen quite a few docs both gps and private, even went to Harley Street in desperation and got nowhere. It was only with the help of people on here that I began to understand my problems. I had loads of blood tests and was always told they were in range and normal. I eventually went to blue horizon and had them done privately. I now know that my vit d is very low, vit b12 low, folate high in range, thyroid low. I started taking vit d and my pain got worse. This was because you must always take vit d with magnesium calcium and vit k2. Magnesium should also be ratio of 1:1 with calcium to prevent problems with too much calcium esp if you are a woman as too much calcium causes heart problems. So its a complicated business and a long road to recovery. Im hoping that once my vitamin, iron and b12 levels return to normal my thyroid will also function better and avoid thyroid medication. So I hope this helps you to try to understand why its important to fix the underlying problems first as docs know nothing about nutrition and cant help you x

  • I've had chronic pain 10 years and it was put down to fibromyalgia and over lapping myalagica enphalitis M.E.for short.I now don't know how long I've had thyroid disease.I take the D and iron but haven't been told about magnesium do you think I should try it.do you not take thyroid hormone and why .this has been an eye owner for me as all my illnesses were fibromyalgia until I was tested.xx

  • ellie

    please start your own thread its confusing to try and help julie who originally posted intermixed with yours too

  • firstly its vital you post your tsh t4 t3 results inc

    ferritin

    folate

    b12

    vit d3

    as all 4 must be halfway in their ranges otherwise your body cannot convert t4 into t3

    if you tell us which area your in someone might know a good endo

    it sure sounds like you need treatment but without knowing your actual results we dont know whats going on

    you might have to consider self treatment with NDT and that might be more cost effective than battling with doctors

  • Sorry iam new on here and how do i start a post.I did manage it on fibromyalgia page.sorry it's probably simple,sorry x

  • 1881ellie Go to the top of this page, on the right hand side there is a large green button 'Write a Post' - click on that to get you started :)

  • Thankyou I've got it.is knew I had done post on fibromyalgia page.when I come on in seem to reply on other people's and don't want to upset anyone.now I know thanks xx

  • Little comfort at the moment, sorry, but if you start medication you will still need to calorie control your diet. Underactive thyroid medication just makes dieting more efficient and able to achieve after, unfortunately, putting weight on. Twenty five years on meds I still control my food intake because of hormonal and medication manufacturing fluctuations. My best wishes to you and hope you get sorted very, very soon.

  • No she won't, and no it doesn't. Please check your facts before posting. It's far more complicated than that.

  • So you think I shifted 3 stones by meds alone greygoose? Back your comment up with info then if I am mistaken.

  • Certainly the thyroid hormone replacement made you shift the weight. But that's not what you said.

    You said ' but if you start medication you will still need to calorie control your diet.' But, it's got nothing to do with calories. It isn't excèss calories that makes people put on weight, it's low T3, so how would 'controlling calories' make you lose it? In fact, if you don't eat enough calories then you can even put more on, because low calorie diet impact negatively on conversion, and you will end up less T3 than before. It's even possible that she needs to eat more!

    You said 'Underactive thyroid medication just makes dieting more efficient and able to achieve after'. That is not what it does at all. The point of thyroid hormone replacement is to increase T3 levels, which will then make you lose the weight - possibly without even dieting. I lost over 50 kilos when I optimised my T3, without changing a thing.

    Also, in order to lose weight, you need optimal nutritional levels. As I said, it's more complicated than that.

    I'm sorry I didn't have time to go into the details earlier, but I was dashing out to pick the granddaughter up from school. :)

  • Yes, optimum nutrition, reducing sugars and starches, increasing fruit and veg and including protein in your diet along with medication.

  • Yes, but just taking levo is often not enough, because it has to be converted to T3. And we're not all very good at that.

  • Please post whatever test results you have. As far as getting treatment, these three choices occur off the top of my head:

    1) Try again. Prepare a list of all your symptoms. Print out the hypothyroidmom.com list of 300+ symptoms and take them back to the doctor who has refused to treat. Show them why you want treatment. Be prepared to file a complaint against them with the local medical board, if they refuse again.

    2) Do a telephone or video consult with one of the doctors who offer distance consultation services. E.g. holtorfmed.com, which is expensive, and probably not an option if you are in the UK.

    3) Self-diagnose/self-treat. Thyroid treatment is sometimes complex due to nutritional factors, accompanying adrenal stress, etc. but it is NOT rocket science. You can purchase testing privately. Members here can give you sources where you can purchase NDT, T3, and/or T4 off the web, and give you advice about dosing strategy.

  • Hi Ellie in reply to your questions. Yes you must use magnesium as they are all interconnected and if you have had all this chronic pain I can relate. I was surprised I wasnt told I had fibro or ME I was just told the tests were fine so they had no idea what was wrong with me. Do your ears ring? When you take vit d the ringing will get worse as your body starts to use up the available magnesium and you will need a good top up. I use ancient minerals magnesium oil. If you use suppliments by mouth u will end up with stomach problems and a bad case of the runs! You do need to find out how low your thyroid levels are because if they are like mine which are just below midway and tsh a bit high its most likely that your hypothyroidism is caused by a vit or mineral defficiency rather than a failing thyroid gland. I use dlux vitd spray. If you read up on vit d defficiency you will be surprised at what the symptoms are. Im sure there is no such thing as fibromyalgia as there is no test for it. Its been invented by docs to put a name on a common condition they have no idea how to treat. I dont use thyroid meds I tried self medicating but felt terrible because of my underlying defficiencies. I will do all I can to fix my health problems without them. My pain has almost gone now that Im using the mag oil, vitd, vit k2 eating cheese and yogurt. I also use floravital for my low ferratin. Ive stopped falling asleep during the day and my hairloss is less. I will retest my bloods in a couple of months so fingers crossed. Good luck with yours xx

  • Hi mags thankyou for info.my ears ringing really badly and it's gotten worse.was sent to hearing clinic and they said I'm not hearing properly. Last week been awful pain worse and ears worse it was whooshing like waves but ringing now.between pain and everything else lately.it's always down to my fibromyalgia but recent bloods kidney disease stage 3 and underactive thyroid and anemia. I'm on thyroid hormone. But when you all talk about t3 and that I don't know what it all means.wasn't until last nite I realised my symptoms of fibromyalgia and myalagica enphalitis M.E.for short.were almost the same,no one had told me .I just thought it was low hormones. I keep sweating it's all driving me mad,thankyou so much xxx

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