Any advice please

[upset]

I'm sorry, first post and it's a long one!

So about 3 years ago I found a lump on my thyroid, had it scanned and told it was a cyst and don't worry about it. It began to be very painful and so saw the Gp for painkillers . I was back and forth as nothing would get rid of the pain. That's when I started getting other symptoms, sweating, being aware of my pulse, hands trembling, weight loss.

For weeks a kept getting told that blood tests confirmed there was no cause, it's all in my head etc. Eventually I went to the Gp as my heart was beating at 130bpm at rest. I would have been put on beta blockers and left to it but I'm asthmatic so was sent to AAU which found I was massively hyperthyroid.

Anyway I was treat for this and it was found to be viral thyroiditis. After a few weeks I was found to be hypothyroid so was taken off the meds and eventually bloods went back to normal.

Fast forward to last year, went to the Gp as I was feeling tired all the time, drinking 3+ litres a day and still being thirsty (not just tired, drained, exhausted ) dry skin, hair falling out. A blood test was 'all fine'.

6 months later I still feel the same and can't lose weight so nurse suggests I see the Gp. So I went today and got told basically it's all in my head, by all means I can have a blood test but it'll come back fine and I just have to put up with it.

I'm of the mind to just think stuff it and not have the blood test because it'll no doubt come back fine and it'll be an 'I told you so' but at the same time I know my body and I know how it feels to be hypothyroid after last time and I also don't trust the gps after telling me it was in my head last time.

I seem to go to the Gp quite a lot (7-8 times a year).... so already think they think I'm wrong in the head. I'm now confused, cross, upset and don't know what to do?!

[monkey65]

You don't sound right to me. What blood tests did they do last time? Was it only TSH? Have you considered getting a private test? You could then get T4, vitamins etc..., and post results on here. Those more knowledgeable than me can give you advice on where to go, what tests and interpreting results.

[upset in reply to monkey65]

Thank you for your reply. Yes my last test 6 months ago was TSH only at 1.7 or 1.9 can't remember.

This is my first time in the forum and didn't know until today about private testing. Looking at it they're quite expensive so ill have my nhs one for now and then consider private testing if they come back 'normal'.

I'm fairly certain that I didn't FEEL normal last time until my TSH returned to under 1.

I'm annoyed that even if it was 'in my head' that maybe some offer of support might be better than leaving me to get on with it? I get in from 5 hours at work and can fall asleep on the sofa ....I'm only 33!

[greygoose]

What else did they test, upset? Or was it just the TSH which doesn't tell you very much? The test you really need it FT3, but they rarely do that, I'm afraid. However, ferritin, iron, B12, vit D and folate should also be done. Are you on any thyroid replacement? Have you been tested for anitbodies and diabètes?

[upset in reply to greygoose]

I believe it was just TSH. Do the ferritin iron etc get tested in a standard blood test? I will get a full print out of results after this test I'm having next week as I only asked over the phone last time.

No I'm not on any medication other than that for my asthma. I was on carbimazole when hyper the other year but stopped that when I became hypo. Was then just left to adjust naturally.

Not sure about antibodies but I was told my blood sugar was fine although it wasn't a fasting test and I thought diabetic testing was done with a fasting test?

[greygoose in reply to upset]

I'm not sure about diabetic testing, just wondered if you'd ruled that out because of the thirst, but being hypo can also make you thirsty.

I'm not sure there is such a thing as a standard blood test - there ought to be, of course, including thyroid screening! I think it just dépends on the doctors discression - or his mood!

Some asthma medication can reduce your vit and min levels, so best to ask for them to be tested, too.

[mmilli]

Upset I totally know where you are coming from. Hang in there. I went through the same sort of experience where I KNEW there was something wrong in my body. Saw lots of Drs. and specialists(very expensive BTW) lots of tests run and always the answer was you need to see a psychiatrist.

I refused to do that because I know my body and my mind and knew this was not in my head I was not some hysterical woman seeking attention or even medication just an ill person trying to get some answers any answers.

After nine months I finally found a DR. that was able to help me. In my case it was an extremely inflamed system do to gluten intolerance. A non inflammatory diet for me helped immensely.

I am by no means saying that is the case with you I am just saying I totally empathize with what you are going through. Stay strong and do no let them sell you crazy or its all in your head.

What I took away from my experience is first always remember how ancient and primal our bodies are. If it feels like it is in peril it is going to send you strong messages that you are. Unfortunately the messages it sends are sometimes confusing and what we are experiencing physically may be a bit off from what is actually going on. Also when we feel that badly our adrenaline kicks in and thinks can get really messy.

Try and stay calm and by that I don't mean calm down hysterical person. If I experience times of anxiety/panic/stress I treat it like a migraine, I put in earplugs go to a dark room or put on dark glasses lie still and hum. My Dr. told me that humming or gargling helps settle the midbrain so that it can send more correct messages. Sounded like the dumbest thing I had ever heard but I was desperate and did it and it actually worked. I still follow that protocol(when I am not to busy worrying that I can find the time ) In my case this helps remind me of what my body can do more than focusing on what is can't.

The moderators on this site are awesome and very knowledgeable so glad you found it too. I greatly hope that what they have suggested brings you the answers you seek. Just don't give up looking.

[upset in reply to mmilli]

thank you for your reply mmilli, it's nice to know that others out there have been through the same .. not 'nice' obviously but comforting.

Your dark room suggestion sounds great although I'm sure I will end up asleep lol.

I have my blood test on Fri so will hopefully get my results early next week. I have been called back to the Gp a week tomorrow for another matter but would like to go armed with some advice from experts on my blood test results depending what they say.