Awful problems getting a diagnosis and help, w/eye disease, hairloss, goitre and hypertension, advice greatly appreciated.

[ladylazarus]

Hi guys.

A short history: I tested hypo about six years ago with a previous GP but was advised by them to leave it to see what happened. My haair started falling dramatically at the beginning of last year- I went to a new GP to find a cause and was told my thyroid was 'normal.' About the same time I began getting bad chest pains, but told it was not serious. A few months after this my thyroid began swelling quite dramatically producing a noticeable goitre. Soon after I was admitted to hospital with a tremor, tachycardia, and the swelling on my throat which was such that it was difficult to turn my head. My thyroid levels were high at this point,but not high enough to warrant treatment according to the endo. She discharged my after one appointment, saying 'most women your age have quite a thick neck but nobody else will notice it". (I'm 31!) At this point I switched GPs again. My current GP is sympathetic which is great, but I am still having health problems.

Since then I have had TSH and T4 tested on and off by my GP,and T3 once, but nothing came back as high enough for drugs. Recently I have lost more hair and my eyes have been swelling to the extent that I am using eye drops ever two hours, even at night, and can no longer read as it hurts my eyes. 'm also constantly thirsty and needing to go the the bathroom, but diabetes tests came back normal. I'm also getting very hyperactive and having trouble sleeping.

I had another thyroid test last week and was told it was normal. After enquiring I found out that was only for TSH- the lab had refused to test for T4 as my doctor had requested as they found the TSH ok. This was really the final blow to me, that even in such a bad situation I was not getting the basic tests, and I feel powerless. It seems wrong that the labs have the power to make these decisions. My GP gave me an referral with an eye specialist a few weeks ago but I haven't heard from them yet. I am pretty sure it is TED and that something is wrong with my immune system, so it is frustrating and depressing seeing how slow everything is going.

I am at my wits end with this. I have no confidence in the specialists and really want to have more thorough tests -especially for antibodies. I mentioned this to my GP who is very niceand who wants to help, but I felt I might have offended him by asking as he didn't really respond,so am uncertain about what to do next. I have an appointment this week with a throat surgeon and as far as I understand it is him who will decide if I should get another endo appt.

It is so hard to ask for help, or make suggestions to improve this painfully slow and seemingly static process,, and as people seem to respond by thinking I am being arrognant and trying to tell them how to do their job- the other hospital endo seemed annoyed when I asked if they would test T3 too, saying 'You're not a doctor, are you?". I always ask for other options politely but even that causes a lot of stress. It doesn't help that the UK NHS normal range is very wide compared to other countries,either. I am trying cold compresses and elevation at night, and eye drops, also ibuprofen, but it isn't helping and I really fear for my eyes. I had thought of getting private tests but can't find anywhere who will test TSI. Plus a lot use the same labs as the NHS.

Apologies for typos, but my keyboard spacebar is a bit iffy!

[Marz]

Welcome to the Forum - you have certainly come to the right place It would be helpful if you could obtain your blood test results and ranges so that we can help. There are so many things I would like to address in your post but feel we should start a the beginning with your results ! You mention private testing - yes they use the same labs as the NHS but you are paying and can have all the tests you desire. Check out QUESTIONS today and there is some helpful info from one of the private labs. Nice young man !

I find it unbelievable that you are going through so much and your tests of six years ago were ignored. These are the tests you need results of....TSH FT4 FT3 Anti-TPO Anti-Tg. Also B12 Ferritin Folate Iron VitD - all of which need to be at the TOP of their ranges. Do not accept Normal for anything from your GP. Get into the habit of asking for all your results so you can monitor your own progress. What is normal for one is not normal for another - especially with hormones.

thyroiduk.org will take you to a very safe place where there is all the information you will ever need for the time being. You sound as if you have a good understanding and the Thyroid UK website will take you further - you could end up being better informed than your GP Also having a routine eye check at your local Optician may open doors for you as they are trained to look out for abnormalities and may refer you onwards....

Good luck and keep posting and asking questions....and wishing you well soon......

[ladylazarus in reply to Marz]

Thanks! I have looked at results with my doctor now and again- all I could see was a simple line chart with a bar indicating where I was on the scale, I couldn't seem to see any numbers for some reason.

[ladylazarus]

Thank you! I must take youi up on that sometime x

[Busdy123]

Hi there,

So sorry your going through all this. It can be very frustrating dealing with the medical world especially if they have big egos to protect. For your eyes you could try taking 200mg of selenium per day. And or eat a couple of Brasil nuts which are

Full of selenium. I also invested in some really good sunglasses to protect my eyes. The selenium has really helped with my TED

[ladylazarus in reply to Busdy123]

Thanks! I started selenium as soon as I suspected TED (thank god for the internet!) I am glad to hear it is helping you.

[ladylazarus]

Hi! Thanks for replying

I went through a phase of feeling very tired earlier last year, but now I feel quite hyperactive most of the time and can't relax. My energy levels have always been very low but lately I simply can't sleep in late at all despite only getting a few hours of sleep due to eye dryness...

If anything I am overheating quite easily rather than feeling very cold. Everything started at pretty much the same time so I think they are related but can't prove it without UK 'abnormal' results'...

I think the doctor said I was borderline high for T4, but when I peered at my last test for T3 it looked right at the lower end of the scale. I'd like to find specific numbers but am nervous about annoying the gp and making communication problems ...

The hospital put me on betablockers for the fast heartbeat and tremors but I can't take it anymore because it makes my eyes and asthma worse ><

I had wondered if the thyroid had enlarged while struggling to increase my thyroid hormone levels, as the previous doctor advised me to leave my diagnosed hypo condition untreated years ago, and maybe this is now causing the hyper symptoms- or maybe some sort of autoimmune issue. I had a scan that found small nodules as well but the scanning specialist said that doesn't need further investigation as it is normal to get them.