Feeling uneasy

[Juliecg60]

Hi, I was diagnosed with overactive thyroid a few months back as yet I have had no medication my dr was waiting till I saw the Endo which should have been next week. That’s been cancelled so god knows when I’m going to get to see him now, just had my bloods done and my t4 as gone up again to 30.5, I have also got antibodies which someone on here said was hashis. My question is if you’ve got hashis do yo take Levo or carbimazole if it’s over, thanks

[Jazzw]

Poor you, how frustrating. Think I’d go back to my GP and ask what they’re going to do to help you. In my book, you don’t need to see an Endo before treatment is started. At the very least, a fresh set of blood tests would be useful.

As Susie said in a reply to your last post healthunlocked.com/thyroidu... you weren’t tested for Graves, so you might have it - then again, this could just be Hashimoto’s (you’ve definitely got that, yes), in which case your result could swing back to normal or to under active at any time.

If you’re overactive, then carbimazole is usually what’s prescribed. If you’re under active (which you probably will be at some point), it’s levothyroxine.

[humanbean]

You might get more response to your post if you change the title to something like "Help please. Still untreated X months after diagnosis of overactive thyroid".

To edit your title click on the word More immediately below your post, then click on Edit, then make the changes you want then click on Post or Submit (sorry I can't remember the word used!).

[Valarian]

Your FT4 is definitely elevated, as was your FT3 last time (was this retested ?), so as you already have an excess of thyroid hormones, you don't need more in the form of levothyroxine. The beta blockers should take the edge off your symptoms, but will have little if any effect on thyroid levels. Currently your thyroid levels appear to be only moderately elevated - it isn't unusual for people with Graves' to have thyroid levels double the reference range, or even more.

It looks as though the only antibody test you've had done was TPO, which indicates autoimmune disease. Although pretty much everyone with Hashi's has this, so do 65% of people with Graves'; the main distinguishing feature seems to be that antibody levels are generally considerably higher in people with Hashi's than those with Graves'.

thyroiduk.org.uk/tuk/about_...

TRAb or TSI are specific to Graves', in that if they are elevated, you definitely have Graves', although even if they aren't, there is still a chance you do, as antibody levels fluctuate, and Graves' is a relapsing/remitting condition (which means that it comes and goes). If you test negative for TRAb, and they don't believe you have Hashi's, the endo may order further tests such as a scan,

Hashi's is predominantly a hypO condition, in which the ailing thyroid periodically dumps quantities of stored thyroid hormone into the bloodstream. As these are depleted, thyroid levels come down, but the thyroid has been damaged, and becomes progressively less able to produce thyroid hormone, leading to a requirement for thyroid replacement eg levothyroxine. Although I believe a hyper episode of Hashi's can last some time, durations of up to eight weeks seem more typical (hopefully someone with Hashi's will confirm this), which would suggest that the longer you remain hyper (without treatment), the less likely it is to be Hashi's.

If this is Graves', it's unlikely to resolve itself without carbimazole or other treatment. The usual approach is to prescribe a relatively high dose until thyroid levels are within range, then either reduce ('titrate') the dose, or keep it high to block natural thyroid production, and add levothyroxine as a replacement ('block and replace'). In either case, you are likley to remain on carbimazole for twelve to eighteen months, there doesn't appear to be any difference in eventual outcomes. GPs are often limited in the extent to which they can prescribe carbimazole, as it's supposed to be supervised by a specialist, but as referral times increase, it seems GPs are beginning to kick-off the carbimazole regime in consultation with teh endo. If your thyroid levels continue to rise, or your symptoms get worse, and your endo appointment is delayed, it might be worth pushing for this. Once prescribed carbimazole, you should have your thyroid levels retested every four weeks or so, at least until your thyroid levels are within range, following which testing may be reduced to every six to eight weeks. At the end of the 12-18 months, you will be taken off carbimazole completely, to see whether the Graves' has gone onto remission; the chances of achieving this are somewhere between 30-50%. If the antithyroid treatment hasn't worked, the endo will generally advise 'definitive' treatment, which involves destroying the thyroid via surgery or treatment with radioactive iodine. If your Graves' can be controlled via a low dose of anti-thyroids, your specialist may also accept this, although the higher the dose required, the less happy they will be (because of the potential side-effects of the medication). You need to be aware of these possibilities, but it will be quite some time before you need to make a decision, so for now, try not to worry too much about them.

btf-thyroid.org/information...

btf-thyroid.org/information...

[Rmichelle in reply to Valarian]

Brilliant advice V💛💛

[Juliecg60]

Thank you so much I am going to the gp today, I am reluctant to take medication as I don’t feel unwell and hoping if it is hashis it will go lower after the flare as calmed down, to be honest I am frightened of taking the carbimazole as I have read on here that they cause bad side effects and as I’m feeling well why would I make myself ill, I just really don’t understand it xx

[Valarian in reply to Juliecg60]

So if you're feeling well, what made you go to the GP in the first place ? Is this now resolved ?

I can understand why you wouldn't want to take medication such as carbimazole if you are feeling well, but as your endo appointment has been delayed, it seems you have time to see whether it will sort itself out anyway.

The problem with being over-range is that your metabolism wil be running fast, and this will impact many systems within the body. You may feel fine, but it may not be healthy.

Unfortunately, dealing with thyroid disease often involves the choice of a 'least worst' option.

[Juliecg60 in reply to Valarian]

I had racing heart, hand trembles and really really hot all the time, at first I thought it was something wrong with my heart, but one of the girls I work with said something today which made me think. I was on hrt for years and stopped taking it at the beginning of the year shortly after when I think back that’s when I started with symptoms but never even thought about it so wondering if that was the trigger x

[Rmichelle in reply to Juliecg60]

Mine started after coming off the combined pill, well done for remaining at work I've been off for 13 months now as its been such a rollercoaster with a whole shabang of symptoms, breathlessness and exhaustion and panic attacks, good luck I hope you remain in work🍀🍀💛

[Rmichelle]

Hi when I was diagnosed last summer the gp told me to wait for meds until my Endo appt but 2 weeks later I rang gp as I was really dire and could not cope, gp can prescribe along as its not above 20mgs of carbi, ring him, apart from that its dangerous, but also remember they take a long time to work, I will leave it there as I can see you have great support from others.xx

[Rmichelle]

Forgot to say I too have hashis and still on carbimazole, if you are hyper then you do need the meds, hyper is very dangerous, I went months before being diagnosed and felt incredibly I'll, I was a complete mess , at the end of the day it is your choice to take it but after time things will get worse, hyper thyroid is very dangerous and you can go into a thyroid storm, I was very much like you before, healthy working mum and taking no meds, I did not want to take carbimazole at all until I was rushed to hospital by ambulance when my heart rate went to 180 and trembling and breathless,that's when I had to take it. I got the carbi from the gp but held onto it for a week later as I did not want it I'm not going to lie to you but a year on its been a real fight with symptoms and I have good days and bad days now.xx