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Thyroid UK
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Newly Diagnosed and feeling like I'm going crazy

Hi everyone. I was diagnosed in February this year after having a routine blood test. The doctor I saw was so offhand about it and made me feel like it was pretty much nothing. He literally just said " good news you get free prescriptions for life, you have an underactive thyroid" and then pretty much see you later. He didn't explain anything and just prescribed me 50mcg if thyroxine. I had to go back about a month later for something unrelated and says to him that I assume that I would need regular blood tests for a while until they were sure I was on the right dose. His answer, come back in a year! I thought this couldn't be right so after a few weeks went and saw another doctor who apologised and said I needed to be tested every six weeks until I was stable. Well I had two tests six weeks apart which apparently came back mormal. Had another booked for another six weeks then another doctor rang me and said she was cancelling my appointment and to come back in a year. Well I pretty soon started feeling rubbish again and all my original symptoms started returning so I booked another blood test. This time the nurse that took my bloods asked me why was I back and told me that all the symptoms I was displaying were down to my menopause. Rang for my results and was yokd by the receptionist that a doctor had looked at them and they were normal. This left me a bit gutted if I'm honest as I felt so rotten but a week later I was back at the surgery for something unrelated and the gp that I saw that day then tells me that my recent blood test had showed that my thyroid levels had gone wrong again snd that i needed my level of thyroxine increased. I'm now on 75mcg. Had about a month of feeling somewhere near human and then started feeling awful again. Numb hands, insomnia, fatigue, anxiety and just can't stop crying. Seem to spend most of my life these days in tears. Anyway I took myself around for another blood test last week and just waiting for the result again now. Is this normal? When am I going to start feeling better? Would appreciate any advise.

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Is this normal? Well, it's normal for the dreadful standard of thyroid care we often get! But not normal in your sense of the word. First thing to do is ask for a copy of all your thyroid blood test results, doctors often say normal when the levels are not optimal or even way out sometimes. Secondly make sure the doctor is aware of how you are doing, whether you have improved or still have symptoms. Make sure they take full note of your symptoms when deciding dosage. You will have to be friendly but assertive. I know how difficult it is to be assertive when hypo. If you feel it helps take someone with you to the doctor's for support.

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Thank you for your reply. I've recently asked for all my thyroid blood test results but they seem quite reluctant to give them to me or they're always to busy to print them off or write them down. I'll ask again when I go back in a week to see the doctor to get my results. You're right about the difficulty of being assertive. When you feel so low and emotional the last thing you need is to be fighting to get what you need and at the moment I don't really know enough about my condition to be able to state my case. Feel like I just have to accept what they're telling me at the moment although I don't really have much faith in them to be honest. Because I'm going through the menopause I literally don't know what symptom to put down to what. I'm starting to read up on hypothyroidism now though so at least in the future they won't be able to blind me with science.

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Karenlb64 What you need to do, every time you have a blood test, go to the surgery a few days later and ask for a print out of the results (give enough time for the doctor to have seen them), never accept 'normal', don't let them write them down as mistakes can be made. In the UK we are legally entitled to our results under the Data Protection Act 1998. Once you have the results you can see for yourself where your levels lie, and if you want interpretation then post them on the forum with the result and reference range which will be like this, eg

TSH: 2.5 (0.2-4.2)

FT4: 15 (12-22)

The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it is needed for FT4 and FT3 to be in the upper part of their respective reference ranges.

The normal protocol after diagnosis is to be retested 6-8 weeks after starting Levo, with an increase of 25mcg of Levo. Retesting/increasing dose should be carried out every 6-8 weeks until symptoms abate and you feel well.

When booking thyroid tests, always book the very earliest appointment of the morning, fast overnight (water allowed), and leave off Levo for 24 hours. This gives the highest possible TSH which is needed when looking for an increase in dose or to avoid a reduction. This is a patient to patient tip which we don't discuss with doctors or phlebotomists.

Your test results should be back so pop into the surgery for the print out and post on the forum for comment. If the receptionist is difficult and days you can't have them, remind her that you are legally entitled to them and say you're sure no-one at the surgery wants to break the law. If you are asked why you want them you don't have to give a reason, if you feel you must then just say it's for your own records. Some surgeries charge a small amount for paper and ink, mine doesn't.

If you've had thyroid antibodies tested, post those also. And it's a good idea to have vitamins and minerals tested as we Hypos are often low or deficient:

Vit D

B12

Folate

Ferritin

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Thank you. I will definitely do what you've suggested and get my results. I've been feeling very alone with this and have been feeling like I'm actually going a bit crazy so it's nice to talk to people that understand and know where I'm coming from.

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Yes, don't feel crazy or let them get you down or accept any diagnosis that it's in your head and need anti-depressants. They do this to everyone keeping them quite unwell for years basically because they're too ignorant or stupid to know much about it and have very little clue themselves so certainly don't feel inferior to them. I can almost 100% guarantee that any science mumbo jumbo they tell you to keep you quiet is often them literally making things up and completely untrue relying on the fact you don't know any better. Read as much as you can about the subject and related conditions so that you're not relying on them to make yourself better and can tell them no when you need to.

Definitely get the tests suggested above esecially where you mention numb hands etc, if you can't get the doc to agree to them, come back here and we can tell you where to get them done yourself.

If their was one particular doctor you mentioned above who was better than the others - maybe the one who apologised and said you needed retests (it's not clear which doc did what), then refuse to deal with any other doc than that one from now on and always book appointments with that one. I am lucky in so far that I now have found and settled for a GP whom I have no discussion with and I go into his office or call him and request whatever tests I want and he fills in the blood test form, he's even prepared to do a prescription for things like antibiotics if I speak to him on the phone and tell him I need them - that's about as good as I can hope for lol :-D

If they still wont print off your results, then write to the practice manager quoting the relevant section of the act mentioned above!

Hope you feel better soon, honestly pretty much everyone has been through the same so you're definitely not alone :-D

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Thanks. That's the trouble isn't it you go start to feel crazy and I have been seriously considering anti depressants for my own sake and my families as it's having a bit of a knock on effect on them with me feeling so low. Trouble is I suppose if I take the happy pills I may be masking the thyroid symptoms. Be then neglecting to get it properly managed and treated which can't be good either can it. I'm very confused.

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To be honest, the ADs don't help anyway lol - they don't mask anything. I mean obviously there are the few who might be actually depressed who might get something out of them but if it's being caused by your physical health and mismanaged thyroid, happy pills aren't going to make you feel better. They just use depression as an excuse so when you say things like I'm still tired and have no energy - they answer - well depression does that lol. Then they have their own side effects!

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Yeah that's what worries me. I felt awful all last year before I was diagnosed and my doctor put me back on anti depressants and I can honestly say that I felt no better so took my self back off them.

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You're not alone now Karen, plenty of support and help here :)

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Hello again. I've managed to at least get hold of the results of a couple of my recent blood tests, (still waiting on the results of my latest). I'm confused though as you mention TSH levels and T4. Looking at what they've given me I can only see TSH level. I'm not sure but think that when I was first diagnosed the doctor said I was up around 8 but I could be wrong. The two results I have in front of me are TSH of 1.2 in May and then 3.4 in August. Will post the next result when I get it this week. Does any of this mean anything to you and why can't I see a T4 result anywhere.

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Karen, yes those appear to be TSH results, but please do include reference ranges for any tests, as mentioned, as they differ from lab to lab so we need your lab's ranges to interpret your results. TSH ranges don't tend to vary greatly, certainly not as much as FT4 and FT3 so TSH is easier to interpret.

A TSH of around 8 will be over range but most doctors won't diagnose until it reaches 10 unless FT4 is below range, and sometimes when thyroid antibodies are positive. TSH of 1.2 and 3.4 will be in range.

The fact that your TSH varies so much makes me think of two things -

Firstly, you had blood drawn at different times of day and maybe you'd eaten before the blood draw. To get the highest possible TSH, which is needed for diagnosis, we always advise the very earliest appointment of the morning for blood draw, and fast overnight (water allowed) as eating lowers TSH.

Or maybe you have antibodies so you need to ask for them to be tested. There are two types of antibodies, Thyroid Peroxidase (TPO) and Thyroglobulin (TG). The NHS rarely does TPO and almost never does TG, however you can be negative for TPO but positive for TG. If you can't get both done we can recommend labs where we can get tests, fingerprick or venous blood draw (at extra cost) at a reasonable price. Many of us use private tests when we can't get them done with our GP.

It's possible that only TSH has been done. Some labs will only do FT4 when TSH is out of range, and FT3 is rarely done unfortunately.

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I'm going to question my gp when I go next week but I think I'm going to pay to go for tests privately. The only other things I can see on what they printed out for me are serum sodium, serum potassium and serum creatinine.

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Post these as well if you like, sometimes useful and can show if problems with adrenals etc so just post whatever you've got.

Potassium and sodium are best when right in the middle of the lower and higher range and in regards to creatinine, normally the lower the better :-)

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Thanks, none of this means anything to me at the moment but maybe you can she'd done light on it all. Anyway here goes...... the test I had done in August my sodium was 140mmol, potassium 4.5mmol and creatinine 81umol.

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You always need to write the ranges of your blood test (the numbers in brackets after the result like 3.5-5.3). THis is because different labs use different ways of testing and the it depends on where the results sit within their given range rather than the result itself. Going by normally used ranges, I can't see anything particularly being an issue there :-)

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Ok thanks. I'll bear that in mind in future. Hopefully I'll get to grips with all this eventually and be a bit more knowledgeable about it.

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My GP was very offhand too. I was just in mid twenties and never treated it as anything significant. Worked for me until 30 years later when other stuff kicked in.

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Most hypothyroidism is cause by antibodies which progressively destroy your thyroid. When you first get diagnosed and put on 25 or 50mcg of Levothyroxine, our thyroid often thinks it's time to take a holiday and produce less hormone than it was before diagnosis, so although we feel better for a couple of weeks we soon start to feel bad again. This is why we need a blood test every 6-8 weeks. Then the antibodies continue to chew away at our thyroid, and we produce less and less of our own hormone to add to the replacement hormone (Levothyroxine) that we are taking. That means we need a higher dose again. Over the months and years we need more and more replacement hormone until finally our thyroids produce nothing and we need something like 125-200mcg of Levothyroxine to keep us going.

Sometimes during that period the antibodies cause the thyroid to dump more hormone than normal into the bloodstream as cells are destroyed. This means that for a week or two we can feel 'a bit hyper' - fast heartbeat, sweating, possibly anxious. Then we become more hypo then ever afterwards and possibly need an increased dose. Some people find that going gluten free decreases their antibody count and stops these 'hyper' episodes occuring.

If you find your doctor is being unhelpful you can get a blood test which includes Ferritin, Vitamin D, B12, antibodies etc done for less than £100 (fingerprick test by post) from Blue Horizon (thyroid check plus 10). Lots of people on this forum use them.

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That exactly describes how I've been feeling. Better for a few weeks and then extremely anxious, panicky and tearful. I'm going to pay to have a blood test taken. Thank you for suggesting that. Just want some answers and to feel well again.

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Medichecks do a good one called thyroid check ultravit and includes all the thyroid tests you need including T3 and antibodies plus the vits and CRP (inflammation) for £99 but it is often reduced to £79 on "thyroid Thursdays" so if you wait until thursday, you might get it cheaper. If you don't fancy trying to get out the blood yourself, you can pay an extra £25 to get it drawn at a local hospital - although it's ony £15 for me to pay the hospital directly rather than through them.

Good luck :-)

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