What next with my GP - 20 years on thyroxine

[Issygr]

Hi there I was diagnosed with an under-active thyroid almost 20 years ago. I have suffered with weight gain despite sticking to a strict diet. I cannot say the last time I had a sleep for more that 2 or 3 hours straight. Each time I go to the GP with symptoms or issues they simply take blood and either reduce or increase the amount of thyroxine. I started of at 175mcg and this has been reduced over the years. Until last week I was on 100mcg despite feeling awful, palpitations, feeling of 'impending doom' all of the time the GP advised sticking on this unti blood results come back on Monday - I said I didn't want to stay on the same dose but wanted to reduce as I know when I feel like this my dosage is too high. He advised that the last bloods I had in March showed levels were normal but thought it best just to keep me on 100mcg! I have been on 75mcg since last Monday but each morning I take my dose soon after my heart starts racing and for the rest of the day I just feel anxious all of the time! As I say this has been going on for nearly 20 years and although I have managed to keep working full-time and looking after the home and family in the last few months I have left my job as I just felt everything was getting on top of me and was starting to feel very anxious and paranoid in a job which I had done for a number of years and which I loved. I feel that although I have a good relationship with my GP I have been feeling like this for almost a year and as I say reducing my thyroxine has not helped at all. Looking for guidance/help or advice.

Should also say that I am a 58 year old woman who has gone through the menopause and when I visited my GP last week another GP within the practice thought I was showing signs of menopause and put me on HRT patches which I took an allergic reaction to!!

Help!!

[shaws Administrator]

This is the day - that you take your own health into your own hands with the assistance of members.

Most of our members have recovered their health by 'going it alone' and feel the better for it. Doctors are very poorly trained and one doctor, now deceased stated that the way the Endocrinology operate puts all patients in a very parlous situation. As he was a Virologist I assume the Endocrinolgy thought they know best when, for many of us, their procedures don't suit all of us, especially those whose TSH never reaches a magic number for us to be diagnosed.

The Virologist invited all of the Endocrinology to a Conference to discuss the 'parlous' state of undertreated/undiagnosed patients but one by one they refused. They didn't want to admit that those , especially not an Endocrinologist, who trained before the 60's knew all of the symptoms and prescribed levothyroxine or NDT due to symptoms alone.Instead he was brought before the GMC for diagnosing and prescribing due to clinical symptoms.

First thing to do is get a blood test and if you can afford a private one we have recommended labs which will do all of them, particular FT4 and FT3 which the NHS don't think have a purpose but they do and I'll give a link and you can see the reason for it.

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

Blood tests have to be done at the very earliest possible, fasting (you can drink water) and should be TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. GP can do B12, Vit D, iron, ferritin and folate. All vits/minerals should be optimum particularly B12 and Vit D as they are prohormones with vital work in our bodies.

Always get a print-out with the results plus the ranges. These are important as labs differ and it makes it easier to respond.

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

If optimally treated we should have no clinical symptoms and feel well. Instead of taking hormone replacements and feeling unwell.

[shaws Administrator]

I have deleted the post as I misread it and it wasn't beneficial for many.

[Issygr in reply to shaws]

I have a friend who is also prescribed thyroxine and she says that she only takes her dose five out of seven days as she was having problems with her GP and has never felt better since deciding this herself! I am thinking of trying this myself to see if this helps with my situation. Any thoughts?

[shaws Administrator in reply to Issygr]

I cannot answer your question. I have also read that we can take one weekly dose of levo. This is a link which explains in more detail.

ncbi.nlm.nih.gov/pmc/articl...

[Issygr]

I normally wake at 630 to take my thyroxine one hour before breakfast this morning I woke at 720 with my heart racing and shaking! I do not want to take my dose of thyroxine as each morning when I take it the race heart begins and feel that if my heart is racing before medication not sure what will happen if I take it! Also in the last few days I have been suffering from headaches and my vision is sometimes blurred! Today I am frightened to get out of bed if I am honest!