Confused and treading water!

[Lostlozza]

Hi I was diagnosed about 2 years ago with hypothyroidism but was never told what this meant,why I had it and if I should have regular blood test done, I was given pills and that is the only time I've seen a GP about it, so I was wondering if anyone had any advice?Should I have regular blood test?If so how often? TIA xx

[shaws Administrator]

I don't know where you live but you've been very neglected, to say the least.

Hypothyroidism is a fatal disease if untreated and if diagnosed (in UK) we never pay for any other prescriptions for any other illnesses.

Initially, once diagnosed you have a blood test every six weeks, usually with an increase, until you are on a stable dose of levothyroxine.

Thereafter you should have at least one yearly blood test if feeling fine. If you have clinical symptoms appearing, you should have a blood test.

You need a blood test to know whether or not you are on an optimum dose. The test should be at the very earliest, fasting (you can drink water) and allow a 24 hour gap between your last dose of levothyroxine and the test and take it afterwards. Tell GP as you haven't had a blood test for a long time and you've taken advice from the NHS Choices for advice on dysfunctions of the thyroid gland you need TSH, T4, T3, Free T4 and Free T3 (probably wont do the Frees but ask anyway).

Also request B12, Vit D iron, ferritin and folate as we can be deficient and everything has to be at an optimum.

Get a print-out from the surgery and put them on a new post for comments.

[Lostlozza in reply to shaws]

Thank you I live in the south east England, I will phone the doctors first thing Monday morning and get an appointment xxx

[humanbean]

What dose of Levo were you put on? Never having been given a blood test is totally shocking.

The way the thyroid should be treated is to give someone a starter dose which varies from doctor to doctor and patient to patient. The starter dose varies from 25mcg per day up to 100mcg per day.

The way things should be done :

1) Start patient on Levo.

2) After 6 weeks do blood tests.

3) Assuming the patient needs more Levo raise dose by 25mcg per day.

4) After 6 weeks do blood tests.

Keep repeating until patient's symptoms are resolved and blood test results suggest correct dose has been reached.

Ask your doctor for the blood tests shaws has mentioned.

***

When it comes to getting the tests done, arrange to get blood taken as early in the morning as possible. Before 9am is best, 7am - 8am is even better.

24 hours before the blood test take your Levo for that day. (It doesn't matter if it isn't your normal time.)

Fast overnight - no food and drink, and no breakfast before the blood is taken - water should be drunk freely though. Get blood taken. Take your levo after the blood test, NOT before.

When you have blood tests in future stick to the same rules each time.

[Lostlozza in reply to humanbean]

Thank you I was put on 25mcg of levothroxine but then at some point without seeing doctor the prescription changed to 50mcg to be honest when the doctor diagnosed me he was very dismissive and made me feel like a nuisance saying that he could put me on meds if symptoms were affecting me that much

.

[humanbean in reply to Lostlozza]

That's no excuse for him just leaving you to rot though. He still has to monitor you if he has prescribed the treatment. I'm guessing that you were diagnosed with "subclinical hypothyroidism". Doctors don't really believe this condition is serious, and quite a few of them won't treat it.

However, some of the people on this forum are in the same boat as you (including me). Quite a few people are bedridden before they even get to the stage of being subclinical. I was diagnosed with subclinical hypothyroidism and had to beg for a prescription, which was eventually slammed down on the table in front of me as the doctor scowled furiously at me.

Treatment of hypothyroidism in the UK is a national disgrace.

[lorilou107 in reply to humanbean]

I have been feeling more and more unwell over the last 4-5 months. I started putting on weight quickly, got even more constipated even though I have been taken off oral opioids since having a morphine pump put in. I started getting pins and needles and tingling in my fingers on both hands and numbness. I started falling asleep in the afternoon and early evening. I went to my GP with the pins and needles and a list of other symptoms, memory loss, trouble finding words, slow thinking and my father is hypothyroid. He did basic thyroid function tests which came back normal!! I then noticed a large lump on my neck and have been referred to an endocrinologist. He said it was a goitre and has done a biopsy which I am waiting for the results of on Tuesday. The goitre has got bigger and I can feel it when I swallow and my voice is going croaky.

I am terrified that he will say the results are normal again and won't do anything. I also have nails that are breaking and hair falling out when I comb it. Consultant said pins and needles weren't related to hypothyroidism but I have read on several sites that they can be a symptom. I can't seem to stop crying every time something goes wrong and my emotions are going haywire.

Surely there is something wrong, I feel like my body is not working properly and I am wading through mud.

How difficult is it to get diagnosed with hypothyroidism, do the TS 3. And TS4 tests show enough to get treatment and will they remove the goitre

I also suffer from chronic back pain and have a spinal cord stimulator and a morphine pump. I've also had a knee replacement.

Any advice for a newbie?

Thanks Lori

[Lostlozza]

I have an appointment with a different doctor on the 31st of this month,so I'm hoping I will get better treatment now will post and let you know how I get on x