in 1981 I had a thyroidectomy done and have been on thyroxine for the the last 34 year, however I was ok not a 100% but able get on with life, now over the last couple of years Dr have been decreasing my thyroxine from 125 down to 75 now I feel really un well, I have bone and muscle aches swelling of fingers and ankles my hai falls out my eye brows have gone my skin is so dry ,I have bad constipation, I can't cope with the heat and start to panic as I can't cool down I feel confused eyes not so good on some days better on others, I have no emotion don't care what's going on in the day fall asleep in the day and then don't sleep all night if I get an hour I'm lucky,my weight went up by three stone from January to May leaving feeling depressed and just cry a lot. I feel unwell all the time and eat very little just not hungry and have no fancies at all. I waiting for twenty for hour water tests and blood tests to come back I just dot care anymore. Leigh
Hi Nana, the crying has been a h uge indicator for me and I know when I start crying that my levels are dangerously low regardless of what the tests show, The constipation and weight gaina re also hugeindicators. Ihave not had a thyroidectomy and am on nearly 200 of the stuff. I feel hyper and hypo symptoms at that level, as my thyroid is still over active sometimes, following being low. Based on my meds, I still have a thyroid and nearly 200 of the natural thyroid seems to be the best balance for the moment. The meds are supposed to be a 1-1 dose, though some doctors thingk otherwise, like a 2-1, etc. Bottom line is that by your symptoms, your levels are way too low. The doctor should always be doing a "clinical" exam, asking you questions about how you feel and so forth. before adjusting the meds.
Why are they lowering the meds?
Everyone I've spoken to has the same story. They finally get the meds upt to where they start to feel good and the docs look at the bloodwork, say they are too high, and lower them, and we're back tot he downward spiral of rapid aging and body degredation, while our lives go down the drain.
To get youself on track and to hep keep the body healthy while adjusting the meds, acupuncture is the best treatment. Its costly and often not covered by insurance, but is the only thing that has kept me functional through all this and has been well woroth the money, even for me, while unable to work. Put your health and yourself first. Good luck!
Hi leigh It sounds like your body isn't converting T4 (thyroxine) to T3 (liothyronine) properly. So the T4 stays in your blood doing damage and giving blood test results that suggest you are on too high a dose, but your tissues aren't getting the T3 they need and give you hypo symptoms. I found out by accident my body wasn't converting T4 to T3 - I stopped T4 for 8 days for other medical reasons and then had a blood test measuring T4, T3, TSH. The T4 was in range but the T3 was low. As there was enough T4 available to convert the T3 should also be in range. I'm not suggesting you should do this as I don't know what other medical conditions you have going on - this is just how I found out. I am now on a natural desiccated thyroid I buy off the internet without a prescription. It costs about £35 a month to get it from US - and I am in UK. It works because it has T3 in it as well as T4. My GP is astonished at the transformation and very supportive. I no longer take thyroxine. As a rough guide, you should be on 1.6mcg (may be 1.7mcg) of thyroxine per kilogram of body weight. If you are on less than this, tell the GP your symptoms and ask: 'could be that your body is not converting T4 to T3'. Also ask how you can find out whether it is or not. You don't need to suffer like this. Make an appointment to see the doctor and take a printout of the list of hypothyroid symptoms and tick the ones you have and ask him how the bloods test results can be in range if you still have all these symptoms. I know it's tough to do when you feel so rough - is there anyone you can take with you to be an advocate and speak for you?
Hi Leigh, This situation is a disgrace. Get straight back to your GP and tell them that you cannot contiue this low a dose as you are undertreated and ill. Take someone with you as it can be quite intimidating facing a doctor like yours. If you get nowhere, make another appointment the following day with another GP in the practice or change practice all together. It's very simple to change GP practice.
This site don't like links posted in comments, but Thyroid UK have links to chemists who will take NHS and private prescriptions for the natural thyroid, that's if you're in the UK. Maybe that would suit you better.
See my reply to Nana56 about getting natural thyroid on NHS or private prescription through Thyroid UK.
Hi everyone thank you all for your reply's I'm just feeling very unwell, I have got an appointment with a edicrine Dr at redhill hospital so will keep you all posted.