Confused all the time

[catherineelennox1]

Hi everyone. Am afraid this will be a big post am so worried about my health . In November last year I was diagnosed with hyperthyroidism. And was immediately put on tablets 20mg of carbimazole. It wasn’t explained very well to me what was going on just that I no I was feeling terrible . I don’t realy no much about this because soon afterward I moved bk to England , I registered with a Gp . And she couldn’t really tell me much untill my medical records have come down from Scotland. Well that was in January. And I still haven’t had any help . The Gp said she can’t refare me to anyone untill she knows what has been going on with me . Know I already have other medical conditions like ptsd . That I take medication for also asthmatic . I’ve had a chest infection since Xmas and just feel awful I went to A&E in January because I had blood in my urine . And they sent me home to come bk for a scan .. is this related to the hyperthyroidism???? Anyway rang my GP to be told everything is fine . I just don’t know what to think . It’s so hard to to get an appointment with the GP. And when I do I have so much to ask her and they don’t have the time I’ve only had one set of bloods taken just a couple of weeks ago only to be told by the doctors receptionist. That all 5 blood test were fine this was over the phone when I rang . Which I thought was strange . Because if I have hyperthyroidism shouldn’t my results not be normal ??? I don’t understand a lot about T3 T4. I’ve only heard it on here I don’t even know what it is . Should I be seeing a specialist?? Can anyone pls help as I don’t know what else to do . Oh there is a lot more going on but don’t really want to give my life story on her lol . Is there things I shouldn’t be eating things I can take that will help . Pls help guys any information on what to do would help as am tired all the time and confused . Catherine xx

[greygoose]

just a quick run-down of what I know about… things.

Your thyroid makes basically two hormones: T4 and T3. The thyroid and its production are controlled by the pituitary by way of another hormone called Thyroid Stimulating Hormone - TSH. Sometimes things go wrong with the thyroid, for a multitude of possible reasons, so you can end up hyperthyroid or hypothyroid.

With Hypothyroidism, you will have high TSH and low T4 and T3.

With Hyperthyroidism, you will have very low TSH and very high T4 and T3.

There are all sorts of reasons for become hypo, which I won't go into here, but the main one is the autoimmune disease Hashimoto's Thyroiditis - aka Autoimmune Thyroiditis. With Hashi's, you start out hyper and go on to be hypo because the immune system is slowly destroying your thyroid.

So, as you see, Hashi's can make you 'hyper' - although it's not true hyper, because the thyroid isn't over-producing - but so can Grave's, another autoimmune disease of the thyroid.

For that reason, before diagnosing, it is absolutely essential that doctors test antibodies:

TPO and Tg antibodies for Hashi's

TRAB or TSI for Grave's

The problem is, they don't. They tend to see a low TSH, jump to conclusion, and a knee-jerk reaction and prescribe carbimazole. The number of mis-diagnoses is quite staggering.

So, when having blood tests, you should always ask for a print-out of your results and ranges - you are legally entitled to them, they can't refuse. And, you should not just take the receptionists word for it that they're 'normal' - a) she's not medically trained, b) there's no such thing as 'normal' when it comes to thyroid. You need to know exactly what was tested - and insist on them doing any missing tests - and exactly what the results were. So, if I were you, I'd ring her back and ask her to print them out, saying that you will pick them up at her convenience.

[catherineelennox1 in reply to greygoose]

Thank you so much . Now I am a little bit more educated . I will definitely do that for the results, I thought it was strange like she didn’t have time too tell me I don’t even know what tests were done. I just thought maybe because I have other illnesses it was that but I just feel awful all the time it’s effecting my work as I have been off so much since January. Now try and get an appointment 😩.. thanks again Catherine x

[shaws Administrator in reply to catherineelennox1]

Don't worry too much Cathereine as it is doctors and endocrinologists who appear to have the least knowledge about dysfunctions of the thyroid gland and there are numerous posts similar to yours due to inept doctors and endocrinologists. We have to read and learn and we will recover and also by asking questions.

When we have blood tests it is recommended that blood draw is at the earliest possible (TSH is highest then and may prevent an adjustment down that we don't want). Also if taking T4 a gap of 24 hours should be allowed between last dose and test and take afterwards. This keeps the TSH at its highest as it drops throughout the day and can mean an increase in dose or not.

A Full Blood Test - rarely taken is:- TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. All tests should be at the earliest, fasting (you can drink water) and allow a gap of 1 hour between dose and food/caffeine. Both can interfere with the uptake of the hormones.

Levothyroxine is an inactive hormone and has to convert to T3 (active hormone). Some of us don't do so efficiently as it is T3 which is needed in our millions of T3 receptor cells. We cannot function without T3.

[pennyannie in reply to catherineelennox1]

Hello Catherine

Just a bit more to think about.

At this point in time, irrespective of why you have become " hyper " what this does mean is that your body is running faster than normal.

That in itself is destabilizing and will make you feel confused, anxious, possibly difficult getting and staying asleep, unable to relax and generally feeling run down.

You will be metabolising faster than normal, and it is important that you maintain your core strength, and that ferritin, folate, B12 and vitamin D are kept at optimal levels during this difficult time. Iit might be an idea to ask for these essential vitamins and minerals to be tested by the doctor, then when these results come through, post back on here, with the ranges, and people better able than me will advise you accordingly.

A good balanced diet full of vitamin rich foods with particular attention to vitamin C would be a good start, with some people finding that they need to reduce gluten from their diet.

[greygoose in reply to catherineelennox1]

Well, do get your results and ranges first - you don't need an appointment for that - so that you can discuss them on an equal footing with your doctor. That way, he's less likely to try and fob you off. If you post them on here, people can explain them to you.

[Fruitandnutcase]

You really need to get a written copy of your blood test results. You are entitled to it by law. Post your results on here once you get them.

If that doesn’t seem to be happening you could pay out and test your own - I use home finger prick checks and you can get a doctors report with the results if you want. The whole thing can be done in a couple of days and you will know where you stand. the one I use checks all the thyroid stuff plus vitamins and minerals - vitamins D and B12 plus folates and ferritin. At least that would put your mind at rest. Again, you could post your results on here and someone will tell you what’s going on.

I don’t think you should be taking 20mcg carbimazole for months on end without seeing an endocrinologist and without any blood testing happening. It is quite a powerful drug and you can become hypo if you take too much carbimazole- which, while you don’t feel as hyped up as when you are hyper - you don’t feel good either.

I’d make an appointment with your doctor even if you have to wait, make a list with the questions you want answered - just bullet points rather than an essay - then get that appointment and work your way through your points, make two copies and give one to your doctor to read while you are talking. I can’t see why your doctor can’t book a hospital appointment for you while she is waiting, getting a hospital appointment can take a few months by which time your notes should be with your own GP.

Not surprised you feel confused, that goes with thyroid territory. I’ve got asthma and it meant that when I was hyper I couldn’t be givenbeta blockers but you are probably past that stage if you are taking carbimazole.

Have you been in touch with your former doctor in Scotland to see if your notes have been dispatched? Maybe hurry things on from that end. What happens with your hospital notes? Surely they must be sent on too?

Good luck with it all anyway. You’ve found a good place for advice.