Help with Test results - GRAVES

[Klaus1974]

Hi all,

Sorry for this rant, but I’m at my whitts end!

I live in the Netherlands- in Sept. 2017 I started to get trouble with by bowels, and all of a sudden, I had panic attacks, and was convinced I had cancer. This spiraled so fast, that I was lying in fetus position in bed not being able to do anything. So I went to my GP, an older man, he immediately did some blood work (see below) and put me on Strumazol (thiamazol) 50mg/day, and promised me I would feel better within weeks. I did, until this year March, where I felt enormously depressed and panicky again, so I went to my new GP (the old one retired), he said that he had no real experience in treating hyper’s, so he immediately referred me to an endo. Surely enough, I had gone overmedicated Hypo. HE then stopped all medication in April and go a scinti done, which confirmed Graves. This sent me into an even worse spiral, hearing the news and being scared of what lies ahead. After the scinti, my bloodwork was ‘normal’, although I cannot shake the bad feelings, panic, crying and general depressions.

(these are for me the main effects of the illness).

They decided, because my rates were 'normal', they would wait another 2 weeks to see what my thyroid does.

We will start on the Struma’s again 3rd May, depending on my results then.

The Doctor says I ‘should’ feel normal, but I feel like I need to go to the psych ward!

please can someone give me some insight to the following test results (bearing in mind that I'm not medicated at the moment since 05-04-2018):

Date 25-8-2017 5-9-2017 3-10-2017 28-11-2017 27-3-2018 13-4-2018

FT4 (10,0-24,0) 29 34 24,3 17,1 5,8 16,5

TSH (0,4 - 4,0) 0,32 0,025 0,055 1,6 36 3,6

Anti Thyroid TG (0,0 -120) 10

Anti Thyroid TPO (< 34) 14

TSI (<1,75) 0,32

Any and every encouraging note would be much appreciated, I'm really down in the dumps. Is there light at the end of the tunnel? Will I ever get better?

Thanks,

Klaus

[pffft2017]

Sorry to hear about your symptoms. I remember the early days and the black depression so well. So your last TSH was 3.6? My endocrinologist told me to aim for 1.0 or below. Yes indeed, there's light at the end of the tunnel, don't let it get you down mate.

[Klaus1974]

Hi pffft -

Thanks for this - am I right in then saying, when I'm back on the thiamazol, it will sink accordingly? - how can I get the TSH level down otherwise?

[Fruitandnutcase]

Hi Klaus, I also have Graves, it has been in remission since 2012. My very first post on here was to ask if I would ever feel normal again and although I would not have believed it - yes, I do. Or as normal as I’m ever likely to be. Before I was diagnosed I felt like you, I thought I was either mentally ill or developing some sort of dementia. I wasn’t.

I had ups and downs while being treated. My hospital treats with block and replace where I was given a large dose of anti thyroid drug to wipe out my own thyroid production then it was replaced artificially with thyroxine. I remember feeling so tired and depressed and I cried ( and yelled and shouted! No fun to live with) a lot in the beginning. I became hypo before I started my replace treatment - no fun.

Bottom line is that you’ve got to hang in and things will get better. It all takes time. I went totally gluten free two or three years ago and that has reduced my thyroid antibodies. Not sure how much that helps but it keeps me happy and I feel I’m at least doing something to help myself.

There is a difference between ‘normal’ and ‘optimal’and you want to be optimal. I’d like to be optimal too but the NHS in the UK are happy with ‘within range’ which is not necessarily optimal and they don’t do ‘fine tuning’.

If you can get your vitamins D and B12, ferritin and folatea tested that would be good. You want them to be well up in their lab ranges to help your thyroid.

I hope you feel a lot better soon. There really is light at the end of the tunnel even though it probably doesn’t feel like it at the moment. Good luck.

[Klaus1974 in reply to Fruitandnutcase]

Thank you so much - I just called my hospital because I had a heart rate of 100 to 120 BPM in the last two hours. Seeing they have taken me off all meds to see what the thyroid will do, I definitely want them to OK me taking the beta blockers again where necessary before we start on the meds again.

It just feels like such a long and -pardon my french- shitty road to be on, and I feel like a victim - so helpless at times.

[Fruitandnutcase in reply to Klaus1974]

It is indeed. Read as much as you can about it all. I kept a daily diary of how I was feeling - doesn’t have to be much but you might find it useful to do that. When I felt I wasn’t progressing I used to read it back and realise that I had made huge progress.

It was also useful when visiting my endo and was asked how I was. Without my notes I would have said ‘fine’. With my notes I used to look at them the night before my appointment and I could say exactly how I felt.. Also kept a record of all my medicines - increases and decreases and blood test results.

I have asthma so I was never given beta blockers and even without them I got to feel better so hopefully they will help you.

[Klaus1974 in reply to Fruitandnutcase]

thank you!

[SickLeo17 in reply to Klaus1974]

There is no reason that I can think of that you shouldn’t take your beta blockers even if it is one in the morning and one in the evening. Or to take them only when needed.

For me it took the edge off the anxiety/ jittery feeling. It certainly evens out the emotional lability for me and I don’t feel so emotionally and mentally fragile when I use the b blockers.

They certainly settle the tachycardia/ fast heart rate

[Klaus1974 in reply to SickLeo17]

Thank you, SickLeo- I have taken them now and feel a little better.

Onwards and upwards!