Down bank

[cribbosue]

Ive been on tablets for under active thyroid for three months felt so much better in the first couple of months but now starting to feel bad again can that be right

[Treepie]

Without providing any test results with ranges and detail of how much levothyroxine you are taking and whether the dose has increased no one can advise.

[startagaingirl]

Hi- when we first start taking tablets the levels in our blood increase and we feel better. But then the feedback cycle kicks in, our pituitary gland "sees" the higher blood levels, hence turns down the tsh a bit, hence our own thyroid "relaxes" a bit, producing less hormone and the overall level in the blood decreases again and we need a dose increase. This whole process takes around 4-8 weeks dependent on the individual. That is why the standard advice here is that you should have blood tests every 6-8 weeks with dose increases - maximum 25mcg a time to avoid shocking the body - as required until we reach the recommended level.

It is important in all of this that we help ourselves, usually with the serious nutrient deficiencies that are almost universal with hypo. So as has been already asked, do you have results for TSh, ft4, ft3, TpoAb, TgAb, vit d, vit b12, folate and ferritin? If your GP has tested these you are entitled by law to a copy of the results. If they haven't done them all, as is normal, then many of us find that a comprehensive private test through Blue Horizons (thyroid plus 11) or Medichecks (thyroid ultravit) is a very worthwhile investment. Watch out for special offers on Thursdays.

Whatever results you can get, please post them with ranges and we can give more specific advice. These should look something like tsh 5.2 (0.4-4.2).

Gillian

[cribbosue in reply to startagaingirl]

Thank you for the info, I’m sorry I do not know my readings the doctor put me on 50g of levothyroxine 3 months ago I have not had a blood test since. Before I was on the tablets I was so so tired having 10 hours sleep then waking and within half an hour not be been able to stay awake. Im not as bad at the moment but started to feel tired again. Im going to the doctors to night so hopefully he will send me for a blood test.

[startagaingirl in reply to cribbosue]

Yes that sounds typical. First thing to learn is that GPs really don't know very much about thyroid and how to treat issues. Hence we have to become proactive patients and take control of our own return to health. We must push for blood tests - which should be as early as possible, ideally by 9am - having fasted since night before, only water taken - and 24-36 hrs after last levo dose. If you normally take at night don't take night before and take after test instead. Always ask for a copy of results and keep them. Ask for advice on each here and for any help you need in getting GP to increase dose if required. Don't wait for your GP.

Gillian

[cribbosue in reply to startagaingirl]

Thank you so much

[humanbean]

Have you had any blood tests since being put on Levo? It is extremely unlikely that your first dose is the right dose for you.

What should be happening :

1) Start on Levo, I'll assume 50mcg per day.

2) 6 weeks later have blood tests. Assuming the dose isn't high enough, increase dose by 25mcg per day.

3) Repeat step 2 as many times as necessary.

4) When blood tests are optimised and your symptoms have been relieved, stay on that dose. Get blood tests once a year after that, unless symptoms occur which suggest problems may be occurring with your dosage, in which case you may need an earlier blood test.

Final dose could be anywhere from 50mcg upwards. An "average" or common sort of dose might be about 100mcg - 200mcg per day, but people can easily end up on less or more than that.

What sometimes happens :

1) Patient is put on 25mcg or 50mcg of Levo and is then left to rot. Patient is not told to have blood tests, or may be told to have blood tests in a year. I would change doctors if that happened to me because it is not the way hypothyroidism should be treated even by the sadistic rules of the NHS.

[helvella Administrator Thyroid UK in reply to humanbean]

cribbosue,

The left to rot is far too common.

This is a rather simplistic description but... What happens is that when you start taking levothyroxine it effectively adds to your own production so you achieve a decent level. But, over weeks and months, your own production drops somewhat. Which leaves you under-dosed.

When you reach a stable balance between what arrives in a tablet and what you are able to produce, and that balance is at a decent level for you, then that can be stable - sometimes for many years.

[cribbosue in reply to humanbean]

Thank you so much

[Hidden]

Yes, that can be a normal reaction after the inital surge of feeling good that you can experience when you initially supply your body with the thyroid hormone it is missing/low on, owing to the feedback mechanism between the thyroid, pituitary gland and hypothalamus. It can be affected by how long your thyroid gland has been failing without treatment, what dose you started on, whether other factors such as ferritin, vitB12, vitD etc are optimal as well. After beginning thyroid hormone replacement therapy, it is important to have regular six-weekly blood tests to monitor how your body is adapting to the hormone you are taking, and your dose adjusted as necessary until you are optimally medicated. Also, how you take your tablets can impact on how effective they are - if on Levothyroxine ensure you take the tablets regularly, an hour away from food and drink, swallow with a good glass of water, and several hours away from calcium and iron supplements.

[humanbean]

When you have a blood test always ask for a copy of the results. The doctors always have to view them first, but after that there ought to be no problems getting a copy of the results. Some surgeries are very reluctant to provide results but you are legally entitled to copies under the Data Protection Act 1998.

When you get a copy of your results always write a list of symptoms you had at the time of the test and keep them with the results. Start keeping a history of results and symptoms. It will help you in future to have this information. Just make sure that you take copies and never lose the originals in your own records!

[greygoose in reply to humanbean]

And note how much of what you were taking at the time of the test. That's important, too.

[cribbosue]

Just an update I will be going for blood tests on Friday. Can any one tell me, when I wake in a morning my hands feel swollen and buzz is this anything to do with thyroid

[Tasker in reply to cribbosue]

Yes, the feelings in your hands are from carpal tunnel syndrome which is another symptom of hypothyroidism. I have that too, sometimes very painful - but others on this forum have reassured me that when my levo is at the right level, the carpal tunnel symptoms should be relieved. So hopefully that will be the same for you too.

[cribbosue]

I have for quite a while now had like stabbing pains in my neck and then under my breast bone just wondering could this have anything to do with my thyroid