I'm just writing this as an update to anyone who may be interested in my seemingly-odd case...
My Endo appointment went well.
(Or so I thought but if you're learning from this post, please read the comments!)
She believes I have Graves disease, despite the antibodies indicating Hashimotos. She said it's not black and white, and I may ALSO have Hashimotos Thyroiditis but right now my body is suffering from Graves and that's what they need to treat.
They have reduced my Carbimazole to 10mg a day and have given me blood forms for thyroid testing, liver function, and fertility hormones over the next 12 weeks. Then I will see her again.
The NHS apparently do not routinely test for T3 and she sees no reason to push for that when my treatment is currently working.
She agreed that I have Thyroid Eye Disease and will try to push through my referral and make it nearer to me in Brighton, rather than me travelling to London.
She also agreed Selenium, Vit D, Folic Acid, and B12 are good supplements for me to take.
I am going to continue with her advice for the 12 weeks and see how I feel.
I will also invest in private blood tests for T3, antibodies, Vit D, Ferritin etc before my next appointment to get a clearer picture of my overall health.
Thank you for all your help and advice in getting me to this stage - I'd have been lost without this group this past month or so.
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She believes I have Graves disease, despite the antibodies indicating Hashimotos.
TPO and Tg antibodies can be present with Graves' as well as Hashi's. But has she actually tested your Graves' antibodies: TRAB or TSI?
It's not black and white, that's true. But she cannot say that you are suffering from Graves' right now without testing the antibodies. Just going by a low TSH is not good enough. Because if you are in a 'hyper' phase of Hashi's, carbi is not the right treatment.
She also agreed Selenium, Vit D, Folic Acid, and B12 are good supplements for me to take.
They are good to take IF you have been tested for these nutrients and found low levels. And IF they are taken correctly along with their cofactors. Except for folic acid. That is not a good thing to take, methylfolate would be better.
If your TRAB was in-range you don't have Graves', three months of treatment or not. If your TPO was extremely high, you have Hashi's. Doctors tend not to understand the difference and often confuse a Hashi's 'hyper' swing with Graves' and prescribe inappropriate treatment.
Can you tell me why I shouldn't be taking folic acid
Because it's the worst form of folate you can take. Methylfolate is far better absorbed. And folic acid has to be converted to Methylfolate, and not everybody is very good at that. Far better to just take the correct form to begin with.
I am at the mercy of the NHS and they believe I have, and are treating me for, Graves disease.
I thought today went well. All my results (except liver function) seem to be improving with Carbimazole.
It does concern me that I have 3 months before my next appointment and my T4 and TSH levels have changed so drastically, so quickly. My plan is to get everything tested in a few weeks and where my levels stand then. Along with T3, which has never been tested, and the nutrients listed.
There doesn't seem to be any advice anywhere on treating Hashimotos with Hyperthyroidism. And even if I find the advice, I need a Doctor for medication.
I'm sorry you are going around in circles - I am too - as I thought your new post after visiting the endo would read that because of negative antibodies for Graves the endo was thinking your ill health was likely due to you having Hashimoto's AI thyroid disease as you have positive over range TPO readings.
I am confused - so anyway, I thought you were switching to PTU -
Essential you are dosed on your Free T3 and Free T4 readings as too low a level of T3 - even within the range - and you will likely suffer the equally disabling symptoms of hypothyroidism, some of which I think you have experienced already.
The Anti Thyroid drug - Carbimazole is semi-blocking you own natural thyroid hormone production and it is essential that regular blood tests for TSH + Free T3 + Free T4 are run every 6 - 8 weeks as you do not want your T3 and T4 falling too far through the ranges and stopping your metabolism too much.
When metabolism is running too fast as in hyperthyroidism or too slow as in hypothyroidism the body struggles to extract key nutrients through food no matter how ' well and clean ' you eat - and low levels of core strength vitamins and minerals - those of ferritin, folate, B12 and vitamin D - will unnecessarily compound your ill health further.
Some NHS ranges are too wide to even be sensible so we can advise where ' optimal ' levels - within the ranges - are for you once we have more information.
I really appreciate the advice but I cannot afford to have private testing done every 8 weeks and they will not test for T3.
T4 and TSH however, I have forms to test twice over the next 12 weeks.
I will get the full panel with key nutrients tested privately between now and my next appointment.
I tried PTU for just over a week and felt like all my symptoms came back, plus it caused (apologies in advance) awful smelling urine. I have some urological problems and didn't want to continue on it. I went back to Carbimazole.
I thought they were going to say Hashimotos too after all the advice on here. She said it is Graves disease and that TPO can indicate either, and the TRab antibodies can go up and down, and my negative result hopefully just indicates the treatment is working.
She is the lead Endo consultant at Sussex Royal Hospital so I was pleased with her diagnosis until the responses here. Rather, I was pleased to have an answer and be told my referral for TED would be pushed through and I might still be able to consider conceiving in the next year.
I don't feel I have a lot of choice but to follow her advice and get some private testing done in between to keep an eye on the things they're not checking.
OK, but you still need a B complex to balance the Bs.
I am at the mercy of the NHS and they believe I have, and are treating me for, Graves disease.
I'd tell them I don't believe I have Graves' and I'd tell them why. And I'd tell them that I don't feel I need treating for hyperthyroidism because I'm not hyper and I intend to stop the carbi.
I am at the mercy of the NHS and they believe I have, and are treating me for, Graves disease.
I thought I read somewhere that carbi can affect the liver. I'd research that if I were you.
There doesn't seem to be any advice anywhere on treating Hashimotos with Hyperthyroidism.
That's because the hyperthyroid phase is only temporary, and there is no treatment for it. Eventually the excess hormone will be used up/excreted and you will become euthyroid or hypo. You just have to ride it out. And, when you do become hypo, you need thyroid hormone replacement.
In my next appointment, I will argue against the Graves diagnoses.
I am going to continue the carbimazole until my T4 and TSH are in range, not that I don't trust your judgement but because it has slowed my hair loss and stopped my palpitations. As soon as they are (which should be a couple of weeks with how things are going) I will stop taking it.
Carbimazole does affect the liver. As does the excess thyroid hormone apparently. She said the liver will repair itself and isn't an immediate concern. I have a leaflet for a 'liver friendly lifestyle' for now.
I feel completely unqualified to argue with Doctors - especially specialists in their fields like Endocrinologists. I am taking all this advice on board though and appreciate everyone's efforts to teach me. I'll get there.
If I felt that endos were really specialists in their field, so would. But the problem is they are not thyroid specialist for the most part. They are diabetes specialist with only vague ideas about thyroid. I don't know how they are with diabetes but I do not trust them where thyroid is concerned.
No. Because it's just one isolated B vit. You need a B complex. Thorne Basic B for example has 400 mcg methylfolate, which is just the amount you need and the right type, plus all the other B vits. I don't think you need a separate folate on top of that because it would be too much.
This is exactly how I received a Graves (mis)diagnosis. It wasn’t until I joined this forum & I learned from greygoose & SlowDragon that TRAB and TSI were needed to confirm. As I said in your last post my Endo described me as an ‘interesting case’ and I agree that for some of us, treatment isn't black and white!
Do keep us up to date on your progress & symptoms…. And do get the FT3 tested privately!
I’m now on Levo/ Lio combination as my TSH gradually rose. Endo does agree that I’m now hypo with Hashimotos (the debate we have is about my previous diagnosis).
I didn’t need carbimazole as my levels were not considered sufficient. My ‘hyper’ symptoms were treated with beta blockers.
So, I guess in terms of Endocrinology care I am going to be treated for Graves until the Hashimotos makes me Hypo instead, and then I might be treated for Hashis.
You don’t need any obvious symptoms for coeliac with Hashimoto’s
Looking through previous posts can’t see any test results for ferritin, folate or B12
You mentioned in one post you are anaemic
Graves patients usually have high iron/ferritin
Hashimoto’s patients very frequently have low iron/ferritin
How low was ferritin at last test
Autoimmune thyroid disease and gluten intolerance
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances.
Most common by far is gluten. Dairy is second most common.
A trial of strictly gluten free diet is always worth doing
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first as per NICE Guidelines
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
With loads of vegan dairy alternatives these days it’s not as difficult as in the past
Thank you for the information, I will read through the links you have provided.
I haven't had any nutrient / vitamin testing lately. I was told I was aneamic about 5 years ago and have been prescribed an iron tablet daily ever since.
When I don't take the tablet, I get restless leg syndrome. Same with magnesium.
I am going to order the Blue Horizon test that includes vitamins.
Restricted diets would be very hard for me. I'm not ruling it out but I will get the tests and try everything else first. I have real issues with food and at this point, don't think I could deal with GF / DF unless absolutely necessary.
I will read through all you've posted and will keep this in mind though, thank you.
just wanted to send you good wishes and say you are on the right track. I’m another Hashi that hyper swings but never been tested for Graves. I may or may not also have those antibodies. I agree wholeheartedly with what you have already learned above. I’ve never been on Carbimazole.
You can ask the GP to test your selenium after a few months if you do end up supplementing before testing. Just query a concern around toxicity and they’ll be squeezing blood out of you before you know it 💉🩸
I took selenium because every resource I’d read suggested I was probably deficient and it turned out mine was over range with no symptoms. Zinc was under though. Along with D and folate and dire ferritin. B12 fluctuates like crazy, I haven’t pursued a PA diagnosis, but I found treating with injections (info on Pernicious Anaemia site) works for me along with a good quality B Complex alternating separate B12/MethylFolate.
You will be rattling with supplements but feeling better over time. My last hyper swing ran from June to October and by Dec /Jan I was just starting to get hypo symptoms again. I’m still learning how to balance things with these moving goalposts.
Again… you’re reading my mind. Every single word. No one would believe that doctors know absolutely nothing about one of the most prominent disorders.
Levo is the #2 prescription in the US. I think there are 200 million a year ( from memory, I think I’ve got that right).
It is too fantastic to believe the state these medical process/protocols are in. I mean, it’s impossible to believe if you didn’t experience it every day yourself.
That's a very scary statistic considering how little anyone from the NHS seems to know about all this!
I just can't help but think I must be missing something somewhere. Perhaps if I ask the right questions, or see the right person, they'll be able to solve all my problems... obviously not.
Privately paying for tests and treatments, and managing my own health with help from strangers online, is very hard to accept. Especially when everything is so expensive and I have brain fog!
I'm sure I must just sound like a broken record to everyone who's been dealing with this for a while. I'll try to catch up.
Thanks for empathising! I hope your health is improving.
Thank you, that's the most positive thing I've heard all day!
I'm glad this post serves a purpose to others too. I also fully believe I will be following the advice from here entirely eventually but I need to get past this 'hyper' phase before I can really start addressing things.
I'm also going to complain to the medical ombudsman once my brain is working properly again. Not just for the lack of knowledge but for the absolute shambles of the Endos administration. It just really isn't good enough.
Let's all hope medical research catches up soon.
Surely GPs and Endos must read forums like this?! There has to be some good ones somewhere.
We’ve often pondered whether GPs secretly come on here for advice. Unfortunately, what is often heard are NHS gp/endos calling this forum out by name and saying how bad/wrong it is. Unfortunately, the God complex and arrogance of doctors (not all doctors) also never ceases to amaze us.
I see doctors on a continuum of well intentioned yet misinformed through bad intentions regardless of whether they know better o r not.
Also - come back and ask any questions you have along the way. One day you think you are getting it, then you learn something else that confuses you. It’s a constant learning process.
That's really disappointing - I would expect Doctors to be grateful for forums like this that can address their skills gaps. I'm always open to help with my job and I don't have people's lives in my hands!
Thank you again. I definitely will. My next step is private testing in a couple of weeks and I'll post my results.
Wonder no more, 7 years in medical school, apparently would be doctors spend an afternoon learning about the entire endocrine system, a small part of that afternoon lecture would be about the thyroid. Absolutely shocking when you consider how common thyroid issues are.
As has been pointed out Endos are mostly diabetes specialists, who may or may not know much about the thyroid. Rather like a builder who may know a bit about plumbing lol.
I've been a member of the forum for 3.5 years and I've read a lot of other members experiences on here, some of them are absolute corkers, you wouldn't believe the absolute rubbish some doctors spout. I dont know if they are lying or if they truly believe their own BS.
I get what you say about listening to strangers over the internet vs qualified doctors, but we have thyroid disorders on here, doctors dont. We know how they affect us, how we feel, what works, what doesnt.
We live with it every day and there is a vast amount of lived experience from members, many of whom have had thyroid issues for decades, who have battled the medical establishment in vain to get properly treated.
No one can tell you how you feel any better than you yourself. Patients are the experts of their own bodies and their conditions. Doctors may know the theory, sometimes, but that doesnt trump actually having the condition, day in and out.
And as I said to another member also suffering from a lousy Endo the other day, if we were treated properly and felt well, we'd be off living our lives and forums like this would be redundant. But the Thyroid forum here is extremely busy. That tells you what you need to know 😒
I think we were all naive at one point, hypo at least is viewed as easily treated, take a pill every day and lo you will be healed. Its a miracle. Sadly the reality is its often not straightforward, there are a lot of reasons why Levothyroxine doesnt work or at least not as well as we would wish.
And when we feel rubbish, still have symptoms, even though our bloodwork might say we look fine, then doctors start dismissing us as depressed, anxious attention seeking hypochondriacs, because it never crosses their minds that actually something physical is very amiss.
And that is the reality of thyroid treatment, not just in the UK but elsewhere. I often read medical news stories and am suitably impressed at the wonders doctors can perform, then I remember that they cant even treat common or garden complaints effectively. I think there is a lot of justified cynicism about medics on here lol.
Doctors have been making me feel like this my whole life - I'm not sure why I still have any faith in them!
It seems there is a distinct lack of interest in thyroid issues in the the medical field, both in research and in practitioners. The NHS has saved my life on several occasions but I think it is now unfortunately at the point of no return, through poor management and a lack of funding. Unfortunately I think only the rich will benefit from adequate health care soon, if that's not already the case.
I have several chronic conditions including Hypo and in my experience of at least two decades of seeing various medical professionals, my opinion is the NHS is woeful for long term conditions. If you break your leg or have a heart attack they are often pretty good, but those are acute situations.
But chronic conditions the NHS has a tendency to either gaslight you and tell you all your tests are normal and you are imagining symptoms and here's some antidepressants,or they shrug nothing they can do you've just got to live it.
I've got to be honest and say we have a number of international members here, although this is primarily a UK forum we do have a number of regulars from France, Canada, the US and elsewhere and it doesnt seem as though thyroid is well understood, much less well treated, anywhere.
We do hear of good GP's or Endos from time to time, but they are the exception, not the rule. Ignorance is not confined to the shores of good old Blighty.
You could ask on the forum for feedback on a particular Endo, we aren't allowed to give public reviews but people can privately message you with their experiences.
Its well worth asking as I have heard even Endos on the approved list have been a let down, that said we have heard of good experiences with private Endos not on the list. You dont want to waste your money and end up disappointed.
I've never used an Endo, private or NHS as from what I've heard they can make matters worse lol. These days I self source my own T3 and stay away from the NHS as much as possible.
Thank you, that's helpful - I will do that at a later date when I'm at that stage.
Can I ask how that works? Self-treatment, I mean. Don't you need prescriptions for medication? Does your GP support your choice when you have to visit for other things?
Sorry for all the questions - feel free to tell me to bugger off now 🙂 I'm trying to understand what the future might hold!
I've been on Levo and T3 only since December 2023. I get Levo on NHS but buy my own T3. T3 is a bit controversial, mostly a lot of medics think Levo monotherapy alone is good enough. Basically Levo is a storage hormone, artificial FT4, which is converted into FT3 by the body.
However not everyone converts, this can be due to a variety of reasons, low vitamin and mineral levels, menopause, other medical conditions or medications, poor gut function. There are even genes that can interfere with conversion.
And if you have low FT3 levels that is what makes you have Hypo symptoms, weight gain, fatigue, feeling cold, anxiety or depression, etc. There is a huge list. So some people, no matter how much Levo they take will never be good converters and adding some Liothyronine or artificial T3 can be life changing.
I've been on Levo since 2020, I started at 50mcg and have gradually increased, but even at 200mcg daily my FT3 levels were never good. I had high FT4 levels, which is not desirable as long term they have been linked with cancer and dementia. So following advice on here I asked for and got a source who I can buy T3 from legitimately abroad, without prescription. There are quite a few of us who self source.
You can, in theory, get T3 prescribed via NHS and we do have members that get theirs that way. But it can only be initiated by an NHS Endo, not a GP, and it can be very hard to persuade them you have a clinical need. T3 is expensive in the UK, although cheaper now than a few years ago, and the NHS is very reluctant to prescribe it. Abroad it is much cheaper.
And GP's often hate being made to prescribe it. We've had members whose T3 has been withdrawn, even though an NHS Endo authorised it. I decided its cheaper, easier and quicker to self source. Many of our forum members are very experienced regarding dosing and I followed their advice.
My GP is blissfully unaware of my taking T3 and I havent yet decided whether to 'fess up, or just carry on as I am. I also source Low Dose Naltrexone privately for my Fibromyalgia, although that is done through a private UK clinic, as the NHS wouldnt prescribe it for me. My GP doesnt know about that either 🤫 . T3 has helped me a lot in the 4 months I've used it.
As I said chronic conditions are really poorly treated and I've had to learn to research and treat myself effectively. I dont have much faith in the NHS these days.
I take the view we only get one life and need to make the most of the time we have, and that doesnt involve feeling rubbish when the solution to making us better is available readily, except the NHS wont provide it. So I take matters into my own hands now.
Gosh, it's a whole new world! Self-sourcing medicine from abroad sounds ludicrous but in context, I completely understand. I may be doing the same one day.
I'm glad you have found something that works for you. Life is definitely too short to tolerate feeling awful if you don't have to.
I am starting to deeply resent the past 5 years I believe have been wasted to illness, without me even knowing.
I've done a lot of reading (thanks to the group) on T3 but I cannot find any reason the NHS are completely disregarding it. Again, I feel like I must be missing something. My Endo dismissed my question about T3 so quickly though, I didn't bother pushing. I am going to get that tested privately.
I'm afraid the reluctance to prescribe T3 is down to one of two things, either dogma and a pigheaded refusal to admit that actually not everyone does well on Levo alone, or its down to cost.
I dont know all the intricacies of why the T3 the NHS prescribes is so pricey, I know there are several brands they use and the cost has decreased so maybe in the future it might be an option for more Hypo patients, but a while ago it was very expensive.
Probably as there seem to be very few manufacturers around so they were price gouging the NHS. Consequently many CCG's announced they were stopping provision of T3 on the NHS, leaving patients who had come to rely on it to make them well faced with going private with all the accompanying costs, or trying to self source.
That's despicable. It's also poor business - sick patients cost more than properly medicated ones in the long run. I believe it though. I was on dabigatran for years (an anticoagulant) and when I tried to get my nan off the awful anticoagulant she was on and onto the same as me, I was basically told it's too expensive to give to the elderly - they don't have to put up with the side effects of the cheaper medication for long! I was told this by a nurse who thought it was disgusting but to advise me to give up trying. I never did manage to convince my nan's GP to prescribe it for her.
Ah well. I guess I better start setting aside a fund for all this is the longer term.
I'm sorry for those of you who have had to deal with this for a long time. I had no idea. I'm sure most people don't.
Well to be fair a lot of people do alright on Levo, as I always say Levo is prescribed to millions around the world, yet we dont have millions of members.
So I would say the majority are either doing ok and getting on with their lives or just put up with feeling under par as they dont find forums like this.
We tend to be the difficult cases on here 🤣. Or maybe we are perhaps less willing to settle for not feeling good, who knows?
Hi Opposite and a *belated Welcome to the forum from me* and, as you are finding out, what a fab, priceless, knowledgeable, mine of information, supportive and empathetic place it is, too. 👌🏽🙂 Personally, I can't praise it highly enough. 🥰💗
I was going to post something to you last night when I saw your post yesterday ahead of your appt today and after I'd read through and caught-up (probably again!) but, then couldn't do so as *I was at home and it was too much to attempt, too late+I wasn't having a good day myselfso, I left it.*
I will respond again (on this post) with some more detail, which I hope will be of help, but don't want to overwhelm you with any more information than is necessary and can also see that you have enough really good, solid links and advice to be going on with above. 👍🏽
However, I do have an important question to ask you in the meantime (and please feel free to correct any part of this that I have got wrong, as I am doing this from a bit of a hazy reading of all your posts at home last night, which I'm not able to access at this time from my mobile/whilst out! 😬). Thus, my question is as follows:-
The original male consultant you had a 'consultation' with (I'm guessing from what you've previously said, was in the same Endo dept as this "Head Endo", who is a female?) and who was the first one to 'suggest' you had Graves' Disease and start you off on Carbimazole/Anti-Thyroid meds on that basis, you only had telephone/video consultation with and the consultation today was your first face-to-face. Question from this is: has either your GP/any of the GP's at your surgery or, most importantly this Endo you saw today, carried out a proper physical examination of your thyroid by feeling it and your neck area around it, along with auscultating it (putting a stethoscope over your thyroid) to listen for [what's known as] a thyroid bruit?
I'll be really interested in your reply and, meanwhile, hope it's ok if I send you a virtual 🫂 along with oodles more empathy and the encouragement to keep coming back here, posting and asking questions - you will indeed get there if you do. 👍🏽🙂💚
*Endnote* Sorry, I have long-standing IT/home ISP-created problems affecting both my desktop and [more recently bought] 'smartphone' with a different provider that are proving difficult to resolve so, I don't/can't often post or reply to posts.
To answer your questions first of all - yes you have the timeline & people right. The male consultant assumed Graves after my initial thyroid results and put me on Carbimazole. No antibodies were tested at this time and my 'appointments' were via telephone.
The Head of Endocrinology, the female consultant, saw me today. This is the face-to-face appointment ive been waiting for since October when first diagnosed as in Thyrotoxicosis.
She did feel my neck but she didn't use any tools, only her hands.
I have forgotten to mention (Apologies- it's all a lot to take in) that she is also referring me for an iodine uptake test.
She said she couldn't feel any obvious nodules but the iodine will help to get a clearer picture.
I'll gladly and gratefully accept the virtual hug and well wishes, thank you very much. Its been a tough few months.
Wishing you well in return, and luck sorting your IT issues!
And please don't apologise! Any and all information is gratefully received but no-one is obligated to teach me these things. I appreciate the time it takes to do so.
I think the reply I wrote in that thread that started with the words "Yes, I think thyroid storm is something they are terrified of as well" might be useful to you.
This is very interesting and something that will come in useful when I am past the hyper phase and need to convince my Endo to prescribe me suitable medications. Which is the situation I believe I will be in at some point soon. Thank you.
For now though, I am still Hyper and taking Carbimazole. While I understand the importance of having enough thyroid hormones, being so overactive caused a range of symptoms that I don't want to repeat, so I don't think additional thyroid hormone is what my body needs at the moment.
Please do tell me if I'm wrong, though - this has been a steep learning curve.
Either way, I'm grateful to have this information to hand and appreciate the time you have taken to put it together.
Do you have to have a PHD to perform these meta studies using data analysis? I wonder if the knowledgeable minds on here, like yourself, could apply for funding to improve the information available to our practitioners...
If the Carbi is helping you to feel better then fair enough. But if you don't actually have Graves' you might only need the Carbi for a very short time, because you'll go hypo much faster than anyone who definitely has hyperthyroidism.
It has definitely made me feel better, I feel like I'm waking up from a nightmare I didn't even realise I was having!
However, my bloods are changing rapidly and the Endo was shocked to hear I'd only been on it 3 months. I do believe I will be Hypo within the next couple of weeks and intend to get private testing done to ensure it doesn't drop too low.
Then I assume I will probably need to start taking thyroid hormones instead. I'm expecting a bumpy ride!
I'm (clearly) not knowledgeable enough but maybe it's something the group could look into, if they'd be interested. There are lots of these things published in medical journals now that just need data analysis, rather than scientific studies. I might be wrong but I can't see why these should only be allowed from Doctors. Apparently there is funding available but no-one wants to study the thyroid.
That’s awesome to hear you’re satisfied with the endo! And that they have given you an ophthalmologist nearer where you live.
For me it makes sense they are treating you for Graves. Ultimately these are names (Hashimotos, Graves) but they are disorders on a spectrum, from what I’ve read. If you become hypo one day, then they will treat you for that. One day at a time, the path to health is slow, winding and curling. I hope the bloods come back much better. Keep us in the loop!
Thank you. This is a healthy take on things - I appreciate that very much.
I am continuing the carbimazole until my thyroid levels are back under control but have ordered private bloods on the understanding they are likely to drop much quicker than expected.
I love your username - that's been me for several years!
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Endo update.
Update on yesterdays Endo appointment
Endo update 
Update on latest endo appointment to review T3 treatment 
Carbimazole after 12M - update
