This is my first personal post to the forum. Like many who have posted before me, there is so much to try impart and so many questions to ask, as this failing Thyroid lark is so complicated, where do I start? Thought it wise to break it down into chunks, so that my foggy soaked brain can disseminate the information bit by bit.
My problems started in 1989 after taking an anti-malaria drug. Years of many joint problems and illness ensued. It might not be linked in any way to my Thyroid problems, but this is my timeline start point for when I started to feel unwell and not myself. Many years later I had a blood infection from an injury and ended hardly being able to walk for years as my immune system attached my body, I was diagnosed with a Seronegative Spodaloaropathy, (Reactive Arthritis), at the time but the Rheumatologist s was not sure. I have ached and had stiffness and swelling ever since.
Many years ago I went to a doctor as I suspected I might have a thyroid problem (weight gain, overheating, dryish skin, and my late father had suffered Thyroid problems). At that time there was no internet or wonderful forums such as this, just the library, so when the TSH test came back negative and the GP said all was OK, I did not pursue it any further.
As life has progressed it has thrown up more many more of the classic symptoms of thyroid problems, but being busy with a family, work and having my owned business and lack of information, I have just carried on with things, but enough is enough.
I have been to my GP, (I took a copy of my illness timeline and my symptoms to her and listed your website link on the bottom, to which she now refers to when I have an appointment). She did take the time to list to me and ran a gamut of tests for many things, many of which that I doubted I would have. She ran a series of blood tests, one of which was for TPO, thyroid antibodies, which came back very high. I had very low B12 level, (which after reading this forum I asked my GP to test for). She says that the other Vitamins etc. are OK, but I suspect after reading various posts on this forum they might not be at optimum level to deal with my high antibodies. She stated that she cannot treat antibodies, and the labs will not test for T3 and T4 even if she requests it and that my TSH was within range, (although she admitted that if my T3 and T4 aren’t functioning this might not show in my TSH results). That one day my thyroid will fail and I must keep an eye on it. She has referred me to an Endo in Bristol, but I have to wait until July and I suspect I might come up against the same thyroid brick wall! She says that I am also hypermobile, and this could be the cause of some of my symptoms.
I now need to get a private test for my bloods to find out my T3 & T4. I have posted the results from my GPs blood tests and the ranges so that at least I can start on getting my vitamins right etc. I am taking 1000 ug of sublingual B12 and 200 ug of selenium, (again after advice on this forum that this might help antibodies).
Through my husband’s job I have private BUPA healthcare. Has anyone had a better experience of going private and their views on treating antibodies?
I just don’t want to go on like this anymore, I am a strong motivated person, but this week I have started to experience the most terrible feelings on waking in the night of feeling so unwell as if I am so unwell I feel like I am dying and feeling incredibly low. When I wake in the morning I am my normal self, (symptoms aside). The B12 helped me at first and I felt much better, and at least it stopped the nightmares and terrors I had been experiencing. But now when I am outside in the light my left eye has started to waters continually. I think I might be swinging from hypo to hyper? Will NDT help or another form of medication?
What astounds me is that if you went to your GP with just a few of the symptoms we experience they would try and find a solution, a way to help. So many adverts in the press, TV and on medical programmes encourage you to go your GP if you continue to feel unwell or experience certain symptoms. And what happens when we do so, we are turned away, I cannot think of many other conditions that would be ignored and brushed aside like this, it is criminal?
I would like add that if I had not found this forum and all the links, and for all the hard work you obviously contribute, I do not know what I would have done. It is a total lifeline, I just wish there could be a thyroid revolution to stop this injustice continuing for us all. Thank You…
Test Result Range
Thyroid Peroxidase AB conc - 1000 IU/mL (<100.00 IU/mL)
Serum B12 – 166 pg/mL (180.00 – 900 pg/mL)
Serum Ferritin – 108 ug/L (29.00 – 470.00ug/L)
Serum Folate – 6.4 ug/L (4.40 – 20.00ug/L)
Serum TSH Level - 1.2 mU/L (0.27 – 4.2mU/L)
(There were many blood from kidney function, to blood cells to my liver but the GP stated they were within range). There is no result under any guise for Vitamin D available, not tested)?