Confused by new results

[Oopsy]

I was told I have overactive thyroid about 4 months ago, and was taking 20g carbimazole.

My T4 went down to 12, and I was worried about going hypo so reduced carbi to 10g.

I have been making a real effort to go to gym, eat healthy, cut out gluten etc..

I got my recent blood results today and I was told they are normal? They didn’t provide T4/T3 etc.. they just gave me a printout which says TSH level 1.36 miu/l (0.27-4.2)

Does this mean I carry on taking carbi?

I have an appointment with endo in October, so should I just carry on with carbi until then?

I’m also really worried endo might still want to do a nodule test?

I’m still convinced my issues were caused by stress, but I don’t want to start going backwards ☹️

[Rmichelle]

Hi oopsy tsh is irrelevant it tells us nothing , you need to insist that your frees are done too, because your tsh is in range it dies not mean you are cured or normal, my ranges are within range but I'm still not right as we have to find optimol levels, not anywhere will do in the range.

You have not been on carbi long enough yet too finish taking it, you will probably be titrated down again but do not do this as without your frees being done as well you really do not have a full picture, for the greatest remission its usual for people to be on carbi for at least 12 to 18 months, sadly you are no better off in knowing as you only have tsh, I had to change to another hospital where my Endo is based as he used to go mad with just a tsh as this is useless on its own.sorry.😊

[Oopsy in reply to Rmichelle]

Thanks for your support Rmichelle, but how do I get T4/T3 checked? The last few times the nurse at my dr surgery got it checked, but this time the receptionist just said ‘it says normal’. I told her it was for thyroid and I needed to know my T4/T3 levels but she said there was nothing else on the computer?

Do I go back to dr or reception to ask for the T3/4 levels? Can they check the same blood test or will I need a new one?

I’m so angry and confused because my dr doesn’t seem to have a clue, and the endo never calls me back! 😳

[Rmichelle in reply to Oopsy]

Welcome to most peoples world, why do you think people come to this forum, I've had 3 endos so far and I too have had trouble with getting frees done, my Endo does it now at his hospital, you could ask your endos secretary to send you a blood request form as your surgery won't do your frees, I just ring up every 6 weeks and they send it in the post, most labs will not do frees if your tsh is in range which is I accurate.

Also tsi for graves should be requested by Endo too and tpo for hashis but I did manage to get it done by my gp as I have celiac too. I felt abit bombarded like you when first diagnosed and l felt , bloody hell what next to do!! But you will realise that thyroid patients are very badly informed and treated this is why you have to keep asking for what you need, never settle for the words spoken "your normal" what is that anyway? I am still fighting for a tsi test from my Endo but he refuses, I've asked several times, he will not take his head out of his backside and just do it!! He says I have graves as he can tell,umm. Hoping one day I will wear him down!!

[Nanaedake]

An overactive thyroid can make you percieve stress differently. Many things are stressful and we usually have the resilience to cope. It's very likely that an overactive thyroid made it very difficult to cope with life's challenges. If you're being offered an investigation into nodules then I would have thought it would be a good idea to accept. How can you make effective decisions about your health without all the information that this would provide?

[Rmichelle in reply to Nanaedake]

I agree Nana, get all investigations done, stress is a lot more difficult with thyroid issues, it thrives on it😊

[Rmichelle]

Do not come of carbi yet wait until October and get full bloods done, remember I've been up and down with lots of doses, nothing happens quickly with the thyroid.😊

[purple64 in reply to Rmichelle]

Me too 🙄One minute on high dose then reduced then back up again drives me mad and then you are told you are normal!!! I don't know what normal is anymore😂. Spoke to GP as I get so dizzy and lose balance reply was I have no idea speak to the hospital!!! We are all struggling to get answers to so many symptoms and no one seems to have a clue. Unless the hospital request frees to be tested they don't get done. I commented on that last time and endo said that GP's don't do it. There seems to be no set criteria as to how we should be tested and monitored. I react much more to stress now than I used to and find that it's harder to cope with.

[Rmichelle in reply to purple64]

Dizziness and off balance is my thing too, I have a friend who I met through tuk and she has been off carbi for 3 months now and she was plagued by headache and dizziness and feeling unstable on feet, she was told its a side effect of carbi and now she is off it guess what its gone, she was told carb is very toxic and has some very poisonous symptoms...I think I agree!! But we have to take it don't we. I've been on for 13 months now.😁 I used to thrive on some stress but not anymore!!

[purple64 in reply to Rmichelle]

Oh ok I didn't know that😱. Yet another thing they don't tell you. I've been on it for 17 months now and just gone down to 5mg. Me too I used to work well in stressful situations not any more it just causes major panic. I don't want rai though either so keep taking the pills 😂

[Rmichelle in reply to purple64]

My Endo did say if I'm still symptomatic in this timevnext year they would take it our, I think I would be happy to do that.😁😁

[purple64 in reply to Rmichelle]

I think I would prefer that to rai. I think if they can't get you into remission with tablets then that's what will happen. Then of course we will be hypo 🙄😤😬

[Oopsy in reply to Rmichelle]

I had a letter from endo asking me to get bloods done at my gp about one week before I see him.

As the gp is so useless shall I cancel the appointment and just the full bloods done at endo?

I hate giving blood so trying to limit the amount I give them! 😳

[Rmichelle in reply to Oopsy]

Call your Endo and say that the gp and labs are just doing tsh, if he says that's OK, get rid as he is equally as bad, sorry sounds harsh but tsh is a pituatry gland and not thyroid it does not give a full picture! My Endo does them,vsay to him you would prefer for him to do it, you have nothing to loose. Its your health not there's.👍😁

[Oopsy in reply to Rmichelle]

Thanks, I will wait for endo to do test because at least I will know it’s done properly.

I will try phoning him but I might as well bang my head against a brick wall!

[Rmichelle in reply to Oopsy]

Speak to his secretary you may have more joy, I just ring mine every 6 weeks and she sends the blood form.,x

[Oopsy in reply to Rmichelle]

The endo sent me a blood form but I wasn’t sure what to do with it?

Do I give it to my gp to test bloods and they send it to endo?

[Rmichelle in reply to Oopsy]

Normally when Endo sends my blood form it has to be tested at the hospital where your Endo is based, unless you are private then it will be different I guess, everywhere is different, you could call his secretary and ask as they would have been told to send it to you.😁

[Rmichelle in reply to Oopsy]

My results get sent straight to Endo and then gp will have results later

[greygoose]

Did you have any antibodies tested? If not, I would insist on those being tested, too!

[Oopsy in reply to greygoose]

To be honest I’m completely confused now. Somebody on this forum said I probably have Graves but will need a TSI test??

I had a letter from endo saying I didn’t have Graves and continue on 20g carbi.

I self reduced to 10g and was feeling ok. I was hoping this last blood result would show T4/T3 back within the lower/normal ranges, but as the dr receptionist couldn’t tell me anything I’m not sure where to go from here?

Continue on carbi until I see endo? Or book appointment with different gp?

[greygoose in reply to Oopsy]

I'm afraid I don't know. But I would ask the endo how he knew I didn't have Grave's, and if I didn't, why was I hyper. You should also have your Hashi's antibodies tested, because you could have that.

[Oopsy in reply to greygoose]

Just from reading about other people on this forum I think I do have hashis, but I’m so fed up with getting different diagnosis.

I’m thinking it’s probably best if I just carry on with carbi and change my endo?

[greygoose in reply to Oopsy]

Well, change your endo, certainly - to one who doesn't just guess at a diagnosis, but does the right tests.

[Rmichelle in reply to greygoose]

That sounds great, in the perfect world eh GG, but as long as endos continue to like the sound of their own voices it not going to happen. But we can hope.😊

[greygoose in reply to Rmichelle]

There must be one around that's better than that, surely!

[Rmichelle in reply to greygoose]

I think there are but few and far between, look at the trouble I've had 3 endos all equally unknowledgeable and unwilling to do tsi- mine takes great pleasure in plastering graves disease in big bold capitals which is underlined on every letter he sends out but still no sign of a tsi test.😁

[greygoose in reply to Rmichelle]

Yes, I know. It's quite amazing just how unprofessional they are! I think, in your place, I would really have put my foot down by now, and told them I'm not taking anymore of their snake oil without the proper testing. Sometimes, a little bit of firm foot-down putting works wonders.

Further more, I wonder why they take such great pleasure in diagnosing Grave's/hyper, and dismissing hypo - and totally ignoring Hashi's! Perhaps they have the mistaken idea that they're less likely to make a complete prat of themselves with an over-active thyroid. I don't know...

[Rmichelle in reply to greygoose]

Yes I agree totally with the hyper bit and them not knowing at all about hypo works, one of my endos actually said it was better to be hypo its a walk in the park compared to hypers!! I was very new to this when he said that over a year ago, I was hypo in December at it was equally as horrendous.

Hey talk of the devil and he shall appear... Just had my invite to see Endo on the 2nd October, lol just had post😁😁

[greygoose in reply to Rmichelle]

More like a stumble over the Bald Mountain on Halloween! Walk in the park, my derrière! They should be ashamed how little they know.

[Rmichelle in reply to greygoose]

Obviously not a clue, have a good day greygoose as I have to go shopping now for my 13 year old daughters football boots for PE, at least I've been given some notice and not usually the night before!!😦

[greygoose in reply to Rmichelle]

How the world has changed! lol 'Gels' didn't play football in my day!

[Rmichelle in reply to greygoose]

She hates it but school gives them no option,, my daughter is not very active, lol, she is a lovely dark goth girl, ha, we call her Dracula's child. Xx

[greygoose in reply to Rmichelle]

She sounds great! I hated sport at school, too. We had to play such a variety of games, and I hated them all! Tennis, cricket, basket ball/netball, hockey, lacross - lacross was the worst! Some of those big girls were lethal with their crosses, I went in fear of my life every time I had to play. And I couldn't do it! I couldn't catch the ball, or throw it, and I couldn't run much. It was a nightmare! Wouldn't have liked football, either. What I liked best was gymnastics, where I could swing myself upside-down on the trapeze and hang there all lesson, warm and comfy, and nobody noticed me - and certainly nobody missed me! lol It was wonderful.

[Nanaedake in reply to greygoose]

Yes, hypo is horrendous and so is losing parathyroid glands!! They don't seem to know.

[greygoose in reply to Nanaedake]

Nor do they care. That's worst part.

[Rmichelle in reply to Oopsy]

Hi oopsy I have just looked back on your previous post the one that has your latest bloods on, you have had Tpo tested for hashimotos it reads <9 with range of 0-34 which means you do not have hashis but no test for tsi is on there.x

[Oopsy in reply to Rmichelle]

I get so confused with all the different tests! I think I was under the impression I should ask for tsi test?

I will need to read back through the last post before I see endo to remind myself.

I just feel so disillusioned as I keep getting different explanations from different doctors.

I feel like they have chucked me on carbi, and nobody seems to be monitoring it properly, or even know what they are talking about.

Thank goodness for this forum to keep me sane! x

[Rmichelle in reply to Oopsy]

Its the sane for everyone oopsy you are not alone but you need to educate yourself on tsh, frees etc and other thing connected to your health, in a rosy world we can sit back and let the professionals do their job, but we live in a world now where we are our own boss and ordering tests etc, googling medical stuff ourselves, I was like you in the beginning getting my knickers in a twist about different tests etc but it will get easier I promise, we are very much left to get on with it, get as many tests done as possiblexx

[Oopsy in reply to Rmichelle]

Thank you. Yes, I am starting to realise we need to take control of our own health.

I don’t really trust doctors because many years ago they kept telling me I had indigestion, turned out I needed major surgery for an ovarian cyst! 🙄

[Rmichelle in reply to Oopsy]

Lol, indigestion!!, before I was diagnosed they said I had a virus on 2 occasions, then a blood clot on my lung, even had the blood thinners!! It was not, so I done my own research within a month and put a piece of paper in front of the gp and said this is what I think I've got and I want all the tests done!; I had thyroid disease and celiac and iron def anaemia, made me laugh as one other doctor said" we have found out what is wrong with you after looking into it" they done nothing it was me doing my own bloody research thanks!! Go for it oopsy!!

[Oopsy in reply to Rmichelle]

OMG! That’s really bad. Thankfully you managed to find out what’s wrong. I was tested for celiac but it came back negative. I’m wondering if I have some kind of food allergy because I have always struggled with wind!

[Rmichelle in reply to Oopsy]

Trapped wind is so painful but also hormones is another trigger, you could always go for some allergy testing to find out, lactose is another culprit for wind and bloating and indigestion etc.

[Marz in reply to Oopsy]

How are you ? How did your appointment go ? Any news ? 😊

[purple64 in reply to Oopsy]

As you are seeing the endo next month I would carry on with Carbimazole purely because you don't want to end up hyper again and have to start all over. I have had my dose changed several times. You haven't been taking it for very long so hang on in there.