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Thyroid UK
87,534 members • 102,245 posts

Not officially diagnosed

I have all the symptoms of hypothyroidism, but having done a blood test (twice) at the GPs office, it has shown as within range (not sure what they measure). However, the symptoms are getting worse, particularly cold intolerance and dry skin. My mother has hypothyroidism and gets prescribed levothyroxine. She left some medication behind recently and I thought I would take them over a small period of time to notice if there are any improvements - there was an overall alleviation of the symptoms. However, I can't get the medicine prescribed and so continue to suffer with no easy means to obtain it. Has anyone been in a similar situation and if so, how did you get a hold of some medication? Thanks in advance.

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Eat healthy fruit drink milk control it your self my friend says it's a lot easier as the docs seem to fob her of she said x

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And if the original poster has autoimmune thyroid disease which eventually destroys the thyroid (or it's not working for any other reason) then eating fruit and drinking milk is hardly likely to put things right. If it was as easy as you say there would be no reason for forums like this.

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This forum is just a way to talk about things and try and help your no doctor either am I so how can you say that? I'm just making a comment to what my friend is like thanks

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Tanyaisback16,

Dietary changes may improve symptoms but won't cure autoimmune disease because there is no cure for autoimmune disease.

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I no clutter, that's what a mean

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43 years of thyroid disease, with all it's ups and downs, tells me that fruit and milk will not mend a broken thyroid. And I think most of the members of this forum will say the same.

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Maybe not I'm not saying it will, there is no cure I no that

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She's had it 7 year seasidesusie. She hasn't took anything for it even though I try to tell her. She won't get bloods took anymore

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Eating fruit and drinking milk is not going to help, believe me.

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Healthy life style can help it won't get rid of it there's no cure for it tbh .

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I have a healthy lifestyle. It helps with life in general, yes, but not specific illness'.

Besides, whether cow milk is healthy or not is debatable, but that's another topic.

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Yes am not saying your not healthy. Your getting the wrong end of the stick jumping a gun, it's just what my friend recommended

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So, you don't actually have a thyroid problem yourself, then?

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But milk and fructose is not part of a healthy diet - esp if you have autoimmune disease. Too much fructose results in high triglycerides and eventually type 2 diabetes, and dairy products often increase autoimmune attacks - less likely if it is raw goats milk.

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kmarquis1 What you need to do is ask your surgery for a print out of your results. Assuming that you are in the UK then you are entitled to them under the Data Protection Act 1998. Make sure you get results for all tests along with the reference ranges.

Being 'in range' doesn't mean anything. It's where you are within the range that matters.

What you really need are

TSH

FT4

FT3 (rarely done)

TPO antibodies

TG antibodies (rarely done by the NHS)

It would also be very helpful to have the following vitamins and minerals tested:

Vit D

B12

Folate

Ferritin

Post any results, with their ranges, and members will comment.

If you can't get all the tests done with your GP, you can do a private fingerprick blood test with Blue Horizon that covers them all and will give a complete picture

bluehorizonmedicals.co.uk/T...

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First thing to do is ask for a print-out of your blood test results, with the ranges. We are (in the UK) entitled by Law. Some may charge a nominal sum for paper/ink.

Post them on a new question for comments. The fact is that when trying to get diagnosed they do not refer to clinical symptoms (know none of them anyway).

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Not sure how it can be difficult to get diagnosed for something though. This all sounds like a lengthy process. I just wondered it there's anywhere I can buy the medication.

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This all sounds like a lengthy process.

Not necessarily.

To register to see your own records online (if such an option is available at your surgery) should take no more than 24 hours.

To get printouts of results should take no more than a couple of days.

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Due to the fact we have over 45,000 members on this site, is only due to the fact they have symptoms but remain undiagnosed due to doctors only taking notice of the TSH or given too low a dose.

Doctors and Endocrinologists appear to have no idea how unwell people are with clinical symptoms and they pay NO attention to them but the blood tests alone.

Before blood tests and levothyroxine were introduced we were diagnosed on our clinical symptoms alone (since 1892 up until the 60's and given a natural dessicated thyroid hormone (which can only be given privately nowadays) in the UK but many people get better using it).

Try and get a print-out as it makes it easier to comment on them.

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It can be a lengthy process, but it will take no longer if you start now than it will if you start later. Levo is such a cheap drug, what is available online - often touted for weight loss or bodybuilding - is not reliable. You have no idea what's in those tablets.

It's difficult to get a diagnosis because the medical parameters for diagnosis are very fine and hormone fluctuates all the time so when it is tested it may be inside the range and regarded as normal. Doctors in the UK are hamstrung (or may imagine they have less discretion than they are actually allowed) on how they are allowed to diagnose and treat. They are often a bit prejudiced against hypothyroid patients, treating us as though our symptoms aren't debilitating or are the natural result of aging, or sometimes they just treat us as though we're lazy and dramatic. And some of them do believe that treatment, even when warranted, will damage our hearts and bones.

There are ways to get closer to a diagnosis (look at the topics on the right hand of the screen where it says 'can't get diagnosed'). Some people do self-treat, but it is more of a last resort than a starting point.

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Thanks for replying.

That's a lot to get tested. I know my vitamin B12 and C are alright from previous tests ( I also supplement in both of those).

What I really want is some form of relief, as in, where to obtain some medication. The symptoms are progressively getting worse, I don't care for the exact details of why or what exactly is wrong, but how best to medicate it.

No diet or supplements have helped, I've been at this for over a year.

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kmarquis1 You won't know what to medicate with, or how much, unless you get your full thyroid tests results. Over medication will cause more problems than you have at the moment.

If you have positive antibodies then you need to address those to try and reduce them. You won't know if you have them unless you test.

Optimal levels of vitamins and minerals mean that thyroid hormone (your own or replacement) can work properly. So you need to know if all yours are at optimal levels and, if not, supplement to get them there.

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Having taken some levothyroxine at 50mg, it seems to have been beneficial quite quickly too.

My vitamins and minerals are optimal as far as I know (or certainly should be going by the amount of supplementing). Basically I've tried all the natural remedy ideas: kelp, l-tyrosine etc...

Just want some medication initially to actually get some motivation and relief to then work on what exact dose or medicine is needed for optimal health.

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Have you been diagnosed and given 50mcg of levothyroxine, so it is definitely important to get copies of your results and 50mcg is only a starting dose and should be increased in 25mcg increments, except doctors are the last people to be aware of this fact.

Did you take levothyroxine not prescribed by GP?

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Wasn't prescribed, was my mums leftover pills, she's been taking them for years.

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It would be best if you were diagnosed. The doctor would probably only take a TSH and T4. You would then be able to get any other medications for any other problems you may get for free. Hypo often runs in families.

Also if you don't have an optimum of hormones your heart and other organs can be affected.

Did you have a test and doctor said you weren't hypo? If so, ask surgery for a print-out of your last test, with the ranges. You should be able to get it without any problems.

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Vit D is recommended to be 100-150nmol/L.

B12 is recommended to be at the very top of the range, even 900-1000.

Folate should be at least half way through it's range.

Ferritin should be half way through it's range, with a minimum of 70 for thyroid hormone to work properly.

You won't know whether your levels are optimal without testing.

Some vitamins and minerals have import co-factors which should be taken at the same time.

Kelp is basically iodine. Iodine should not be supplemented unless we have been tested and shown to be deficient. Iodine should only be supplemented under the care of a practioner, and it needs to be balanced with selenium. Iodine should not be taken by people with Hashimoto's as it can worsen the condition.

You need to know if you are capable of converting T4 to T3. If you convert well enough then Levothyroxine alone is usually good enough. If you don't convert well enough other treatment options come into the picture. You can't know if you convert well enough without testing.

If you self medicate you have no chance of getting a diagnosis from your GP and then you will be locked into a lifetime of buying your own medication (not always easy) and private testing.

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One way to make it impossible to diagnose you is to take meds. You will never have abnormal blood results if you're medicated, and if you self-medicate you'll have to monitor yourself closely, which means paying for your blood tests yourself.

I understand your motivation - I had symptoms for years and was told over and over that my tests were normal and I was on the floor with exhaustion - but self-medicating w levo is a bad idea for a lot of reasons.

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Your first step should be to get hold of any blood test results from the last 2 or 3 years or so, and then post them in a new post for us to see and give feedback on.

You might be able to see them online. To do this, take photo identity to your surgery and ask for the information you need to view your medical records online.

All surgeries have to allow patients to view medical records online eventually, but many of them are dragging their heels.

If you can't view results online, then ask the receptionists for copies. You need numbers and reference ranges. The receptionists will almost certainly have to ask the doctor's permission to print them out, so you will probably have to go back the next day to collect them. Ask how much it will cost. If they want to charge you a lot then back out, and come and tell us about it. For £10, for example, you can legally ask for a copy of everything in your medical records which is held on a computer. If they try and charge you £10 for a few sheets of paper, then you should change your mind and come and ask us for assistance. We can tell you how to go about making that request for everything.

Always be polite, even if you are annoyed or provoked. The receptionists don't make the rules.

People sometimes find that they are hypothyroid and haven't been told about it or treated. If you can get the evidence and understand the results then you could persuade a doctor to treat you, which is hugely preferable to self-medicating if you can get it to work for you. Apart from anything else you are entitled to free prescriptions for life if you are diagnosed hypothyroid.

Buying thyroid meds online is really something that should only be done as a last resort, when Levo doesn't work for you or you can't get diagnosed. Most people who take Levo do well on it.

Welcome to the forum. :)

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Some information for you:-

thyroiduk.org.uk/tuk/diagno...

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

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

Your doctor should also test for thyroid antibodies, because if you have antibodies but your TSH is not in the 'range' they have to give you a prescription. Symptoms can appear long before your TSH is reckoned to be 'within a range). Even if the top of the UK is around 5 the BTA guidelines instruct doctors not to prescribe initially until TSH is 10 so I think whoever made this rule had a mental aberration. In other countries if TSH is around 3 they get diagnosed.

Always get the earliest possible test, fasting (you can drink water) and if you were on thyroid hormones (levothyroxine) allow 24 hours gap between last dose and test and take afterwards.

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Thanks.

A lot of valuable information.

Given that there's a lot to read and absorb, I have a question.

What exactly do I ask for a print out of? Which blood test result? All I know is they tested for several things and nothing obvious came back. However, I am almost certain it's hypothyroidism, but of course I'm only basing the diagnosis on my own suffering.

I understand self-medicating is a last resort, but when I'm desperate and not getting anywhere through visiting the GP, I would prefer to at least self medicate until I feel better enough to understand all the blood test results better.

Basically: I am highly dysfunctional at present. I can't work properly or remember things. I can't sleep and I am cold to the bone. All the talk of blood tests and basically doing the doctors job is confusing to me because I haven't slept and have no understanding of these things. Plus I'm neurotic.

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Most people who come here are in the same boat as you.

Ask your surgery for a print out of all tests that have been done.

You have been given a list of the ones you need so if they've not been done you know what to ask for or you do them privately.

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I'm like you - 2 'normal' thyroid tests at doctors but feel terrible - no energy, ache all over, sore + stiff, heart palpitations, racing heart, heartburn, too hot - too cold and I'm now at the stage where I don't get to sleep till 6 in the morning and then just sleep on and off till 12. It's hard to get dressed or have a bath or wash my hair - nevermind go out or see anybody.

I really must get off my backside and get my Thyroid test results.

Waiting to do another BH test in April, the last one showed very high FreeT4 less than a point out of range and very low FreeFT3 less than a point out of range - but if I can't get an abnormal blood test!

Scared to self medicate in any way just trying to look after myself - thanks to everyone's advice here I'm taking magnesium, an iron tonic, Vit D3 and I'm going to have the extra vit tests with BH next time.

All the best love - hope you can get somewhere x

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The fact is that the range band for normal and abnormal is really broad and it can vary from person to person so if your reading is in the middle or borderline the doctors really don't know for sure and thankfully nowadays tend to on the whole not medicate if in doubt. Unlike 30 odd years ago when I was diagnosed as 'borderline' and put strait on to 100mg of Thyroxine. The fact is that once you go onto medication the thyroid will eventually stop producing the hormone and so you can never come off it. (they don't tell you that when they put you on it) I believe that my thyroid and indeed all my adrenal glands were overworked at the time because I had gone through a period of extreme stress, and had the doctor waited I think with help it could have recovered. I have now managed to reduce my medication to 50 mg a day and take kelp along other diet changes. I still feel the cold but that's all. Don't take medication unless you absolutely have to.

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You can get very good USP thyroid, (brand name THIROYD), very cheaply without a prescription. It's from Thailand, although the man I spoke with on the phone was in the Netherlands. My experience with it has been very good, as has that of others who take it.

You can order it on line.

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Thank you.

From which website can you order?

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Please visit this link before posting any responses:

healthunlocked.com/thyroidu...

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