Just a little update...currently been med free (usually HYPER with graves) for nearly a year but been edging on the side of high t4 the last two months with a third month test definitely high so Gp has made the decision to re start meds. I’m feeling so frustrated because I had such a horrific ordeal being over medicated last year and becoming severely hypo, to the point I couldn’t function and thought I was dying, and my endo was just like “oh let’s just see how it goes”
I’ve tried so hard...my diet has been great, vitamins and minerals optimal, exercising, don’t drink, don’t smoke, prioritise sleep and still im back at square one. It’s taken me the entire year to get back to some level of normal again but it’s left me with an awful case of anxiety that I never had before but I had Started trusting my mind and body again, with just a few days scattered throughout where I felt “off”... I don’t feel I’ll ever be my normal self again.
Anyways, just taken my first dose after nearly a year and I’ve already convinced myself (due to the anxiety that the whole ordeal has riddled me with) that I’m losing my mind again...and of course, gp and endo won’t give a shit... I’m back to see endo on 6th and I know they’re going to try to push surgery again. I don’t want it...or any of it...but who does right!
I suppose that was more of a vent than an update...but here we are...
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Inafunk63
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I can understand your utter frustration. Sometimes we do every thing right but our bodies don’t play ball! Make sure your GP is testing your T4 and T3 and not dosing on TSH. Watch your T3 carefully to make sure it doesn’t fall too low - if it does, you’ll get the hypo symptoms. Good luck. Hopefully you’ll be off the meds again soon or find the right balance for you.
I lot of people on here with much more experience in this area then me usually advise not to go for any more permanent solution unless you are absolutely sure. There is nothing wrong with staying on the meds if you prefer that approach. It’s your thyroid, your body, your decision. 🤸🏿♀️🥛
Yes, I know it's not easy and presume you have been diagnosed with Graves Disease.
The more you can learn about this autoimmune disease the more able you will be to take an active role in the management of your symptoms.
I'm with Graves diagnosed 2003 and had RAI 2005, and deeply regret having this treatment, but I wasn't offered anything else. I now manage Graves, thyroid eye disease and hypothyroidism.
There is a website in the states that has helped me learn of my condition. True I've learnt everything backwards, but you are better placed to get a handle on things early and be prepared and understand what your options can be, rather than just be told what is to happen to you.
The Elaine Moore foundation is the accumulation of work and research by Elaine Moore who has this disease and went through RAI in the late 1990's. and she found no help or understanding in her journey with Graves so wrote a book to help others.
She has now become a leading researcher in the field of autoimmune disease with special reference to Graves and there are sections on her website, detailing alternative, holistic, life/work balance, diet, relaxation and all things Graves for anyone to use.
Much like this excellent website there is an open forum where Graves patients can ask questions and read and learn from each other.
It is Stateside, so some medical terminology etc will be different but is an excellent adjunct to this amazing site keeping you across all aspects of what would appear to be a poorly understood and managed autoimmune disease.
I read of people of AT Drugs for many years and believe this to be the best treatment option if you can be managed on as low a dose as possible whilst your body tries to ride out, and rebalance itself. It needs skill and patience on the part of the endocrinologist and obviously it's better for you to keep your thyroid if you can.
I was diagnosed 12 years ago apparently but no one ever told me I had Graves‘ disease until this time last year...I suppose partly due to my own negligence because I didn’t question them ...They just said your thyroid is over active here take these pills and you’ll get better and me being the trusting person I am just took their word. I read everything I can on graves and the thyroid etc and I find it’s become more of an obsessiveness...it is frustrating...all of it...especially when I feel let down by the doctors that are meant to be looking after us. I don’t think I’ve ever had my t3 tested. I asked my gp to do it and he says it can only be ordered by endo so that’s why I’m going back next month. Hopefully I don’t go Hypo again while waiting. God love anyone that struggles with HYPO that was by far the worst experience of my life and I’ve been through some tough shit!
I’m not sure on what grounds they’ve put you back on meds. Is your TSH suppressed? Are you Graves antibody positive? Was your FT4 elevated out of range or just high in range? Are you symptomatic? I’d definitely want FT3 and antibodies tested first before going back on meds.
Most recent graves antibodies were 3 and range is meant to be less than 1. Tsh is less than 0.01 and T4 29. 4 (12-22) I actually hadn’t considered the fact was I symptomatic actually...I notice a slight tremor of my hands the last few months and have steadily been losing a pound or two a week for about 6 weeks now without trying but other than that I’ve felt well...my go started me on a dose of 75mgPTU per day which I know is a low dose but in all honesty I’d rather not be on medication at all. I’m torn between what to do while I wait for my endo appointment...it’s still a month away.
I was nodding all the way through your post. I GET IT. I feel the same and it’s so disheartening to go through the whole rigmarole of the craziness before diagnosis the bewilderment of toxic 60 year old medication that only suppresses the symptoms without doing anything to address the immune system. The overmedicated “just to be on the safe side”! The side effects, multi faceted with graves and medication. The decision to do everything right, eat right, sleep right, vitamins exercise etc, then 2-3 years of graves and the routine of graves taking over life you find yourself back to the same point at the beginning or worse and the utter despair of the 3 current “treatments” anti thyroid meds, RAI, thyroidectomy, NONE OF WHICH CURE GRAVES... YOU WANNA SCREAM, no one puts this amount of effort into their health to end up worse with no cure.
At the moment that’s all there is and for me now I accept that I’m staying on 5mg carbimazole long term because it gives me hope that a cure will come. I have heard from others the RAI and thyroidectomy causes their own set of problems while still having the graves antibodies swirling around.
Sometimes going through so much when you know you’ve tried everything to help your health but it’s a law until itself acceptances comes and stress reduces.
Good luck I know it’s a crappy serious illness and the current treatment that is not fit for purpose in 2019 that makes you want to scream and have a 2 year old toddler tantrum 😊..
Graves’ disease has robbed me of my resilience and made me feel weak. I hate it. And because it’s an “invisible” illness it’s also incredibly isolating. I’ve never physically met a single person that has graves so no one understands it ....
You tested positive for TRAb and probably came off anti thyroid meds too soon. While they were high you had a higher chance of relapse. I am in the same position and plan to stay on meds for a few years as this seems to give the best chance of remission. Like you I went hypo and now take block and replace. 10 mg carb plus 50 mcg levothyroxine and feel good. The problem with measuring TRAb is it doesn't distinguish between stimulating TRAb and blocking TRAb . If we have the latter dominating we will have hypo symptoms. So for us B and R is a good option but needs careful monitoring to achieve the correct dose
I’m sure I came off too early because I weaned myself off to give myself a break. Honestly I felt like I couldn’t go on with life feeling like I had completely lost my mind and felt detached from everything inside and around me. i couldn’t make sense of things I was looking at, or hearing, I had awful hypnogogic hallucinations amongst many other things....so I decided (with the hesitant support) of my endo to wean myself off. He warned me I would probably be back so have had to get my levels checked every four weeks since. They just slowly crept up each month. I was on 20mg carbimazole at that time and ended up at one of my lowest points with a t4 of 6.74 (12-22) and my endo told me to drop one tablet a week and let’s see how it goes. Like I said in my original post it’s taken me this full year to even begin to start to feel normal but mentally it has scarred me. I still get upset and panicky every time I think about it. I missed out on so much...including the last year with my youngest before she started school. I can’t remember really anything from that entire year. It’s been awful. And here I am back on the same medication that I associate so much emotion and anxiety with...
Oh I do feel for you, I have Graves and TED and yet again, we have tried to drop my meds (20mg Carbimazole) and my TSH vanishes so they put them back up again. It is so frustrating when you do all the right things and it seems your own body tries to sabotage progress. I hope you get the answers you need and more encouraging news soon.
The important point in your story is to remember that you are the only person who can make decisions about your body and your treatment. Doctors can advise you but you make the decision. This is backed up by the doctors Code of Practice and the law.
As may well know, some doctors don't know as much as they should do so I suggest following the advice of other posts on this forum and read up a bit so you have some idea of what you want from the doctors.
If you don't want surgery you don't have to have it. If you don't want a certain medication, you don't have to take it.
Thank you for that. I appreciate the reminder. Sometimes it feels like you’re being pushed into something that you don’t really want. I don’t want the surgery or RAI. I figure maybe one day it may sort itself out? And I’m in total fear of ever going hypo again which I gather is unavoidable due to the fact that I don’t know how I’ll react to Levo or if I’d need added t3 and if I did would I get it? and even so, would they ever get my dose right...there’s no going back after surgery and I don’t feel prepared to take that risk
You have put that very eloquently. You may benefit from saying exactly that to your doctor and remind the doctor of your choice. You may need to moderate your language, because the doctors may take "total fear" as an excuse to say you are not making rational decisions, and say they are acting in your best interests.
You could say that you have weighed up the risks and you prefer to use another method instead of RAI or surgery. This is in line with the guidance and law. be prepared for a struggle though.
The guidance is actually called Consent: patients and doctors making decisions together
note that patients comes first and the title ends with together.
Doctors are just like plumbers. Some will do the best job possible and others will do what is easiest for them. We don't know which one we get until we employ them.
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