Off the thyroid meds

[Ginger-bread]

Well I’ve been on 40mg carbimazole for 18 months and then ended up on 100mg levothyroxine as they send me under active, so I’ve been on block and replace for my overactive thyroid about 10months, now my consultant is taking me off both and blood test and back to see him in September, I have Graves’ disease and I’m hoping that it doesn’t come back now I’m off the meds, as anyone else’s returned after stopping meds thanks

[bantam12]

I never stayed in remission for long unti I had partial op then ok for 30 years before Graves returned so it can come back anytime .

[Ginger-bread in reply to bantam12]

How long were you on your meds for before you came off thanks, My thyroid is in normal range now apart from my TSH and that’s still 0.01

[bantam12 in reply to Ginger-bread]

On and off for several years but constant Hyper was affecting my heart, I was only in my mid teens so surgery was my only option, my sister was the same. When it came back I was on Carbi then block and replace until I had RAI, wish I had done it sooner.

[ling in reply to bantam12]

What were your symptoms when it came back after 30 years? What made u wish u had done it sooner?

Thank you

[Valarian]

Good luck !

I’ve been on carbimazole for two years, but haven’t managed to d op below 15mg/day without numbers creeping up over range again

[Ginger-bread in reply to Valarian]

Thankyou, I have to say I’m slightly worried that I’m going to go back over again, I don’t think I could cope with all them symptoms again and been so poorly, sorry to hear that you haven’t been able to come off them, but my consultant didn’t say I could go back on them, he said two options if you go over again, which is RAI or thyroid surgery 🙁

[Valarian in reply to Ginger-bread]

Yeah, I know how you feel, although my thyroid levels have never taken off quite as they did when I was first diagnosed (mainly down to regular testing) so I haven’t had to go through all that again. It’s still a bit of a spectre though...there aren’t really any good options if you don’t achieve remission, more like ‘least worst option’.

[Ginger-bread in reply to Valarian]

Fingers crossed I stay in normal range, and thanks for your reply

[ling in reply to Valarian]

What are your antibodies levels?

[Valarian in reply to ling]

Don’t have them to hand at the moment, but they were pretty high when first measured, and still higher than they liked when tested again six months ago.

[ling in reply to Valarian]

TRAb?

Unless you are feeling terribly, it might be worth giving the carbimazole a chance to bring the antibodies down some more, and maybe that might help with the blood levels stabilising, rather than yoyo-ing about??

[Valarian in reply to ling]

Yes. I’m sticking with it for the present.

[ling in reply to Valarian]

My TRAb level was very high as well in the beginning. It took about 3 years, consistently on carbimazole, never trying for remission, before it started to come down, and in the last year, finally came into range. I'm hoping to see it gone or to it's lowest cos of TED.

I wish you all the best in your journey : )

[humanbean]

Fruitandnutcase has been on treatment for Graves' Disease in the past. Eventually she came off meds altogether and has remained in remission for a few years. You can read her profile here :

healthunlocked.com/user/fru...

[Fruitandnutcase]

That sounds like me. 40mcg carb for three months - became hypo then had levothyroxine added in until I was taking 75/100mcg along with the carbimazole. Then exactly a year after treatment started I had an appointment with my endo and stopped the lot.

I think it takes a while for your body to get used to the ‘new normal’ I had been hyper for a long time before I was finally diagnosed so ‘normal’ felt quite odd.

I do home finger prick blood tests to be sure my vitamin D and B12 are well up in their ranges, take vitamin C, vitamin D3 with K2 and some magnesium, sometimes I top up my B12 with Jarrows sublingual B12. I eat nuts and seeds, lots of fish, chicken, eggs. I also went totally gluten free about five years ago when I developed inflammatory arthritis - yet another autoimmune condition. For exercise I do Pilates and walk a lot. Since I went gluten free my thyroid antibodies have gone right down. I don’t know if that would have happened anyway but I’m sticking with being gluten free. I’m hoping to stay in remission for a lot longer but who knows.

[birkie]

Hi ginger-bread

I had my thiyroid removed in May this year because it was toxic I'd been ill for over 4 years but GP always put it down to the menupause,,anyway Sep last year another GP in my surgery saw me done bloods and my T3 was 24.2..finally I got a diagnosis..my thiyroid was very overactive making me really ill I know what you mean by not wanting the symptoms to return.i was informed that I would be on thiyroxine for life I've been on it for eight weeks and still no change in symptoms just this monday I saw my surgeon he noted the tremors ect and said maby your on to high a dose of meds I'm on 125mg he took bloods I'm still waiting on results..but very same day I had a server pain in my right hand side below my ribs and in to my back It became so bad my friend took me to A&E where they diagnosed a kidney stone my bloods also showed raised calcium levels I'm not doing good on levo I feel no different as I said,,but I thought you could not live without levo if you have your thiyroid removed...I have no idear what block and replace is but I know I can't go on much longer feeling like I do...I thought consultants gps and surgeons should keep a eye on you in the first few months whilst your on thiyroxine to check levels. my surgeon said as soon as he receives the blood work he would contact me to lower the meds so far I've had no word and I've rang his secretary with the information on the blood work I had done whilst in hospital with kidney stones...seems like even when your not feeling well were the ones running about trying to get answers..😫😫😫

[ling in reply to birkie]

Really sorry to hear you are doing so poorly birkie, and to have to run around looking for answers, that's the ultimate insult!!

I'm putting Greekchick in the loop. Maybe she can help with some advice. She too recently had a TT. Greekchick

Thanks Greekchick, over to you : )

[birkie in reply to ling]

Thank you...I'm sure I have conversed with greekchick..be nice to know what her take is on this I'm totally exhausted sleeping through the day although I try not to..been awake for 19 maby longer hours..feeling totall,nausea,tremors,fast heart rate,,to put it simply I would swear my thiyroid was still in my body...😡😡😡😡😡😡

[ling in reply to birkie]

What was your original diagnosis before the TT?

Greekchick has very good doctors. She's in the process of titrating her meds, and appears to be improving nicely. Right Greekchick?

I know zilch in this regard, but you do sound like you have too much thyroid hormones sloshing around in your system??

Is it correct to say that after a TT, there's a release of thyroid hormones into your blood stream, so how much thyroxine you are prescribed after the surgery, has to be carefully adjusted depending on what your blood levels are??

Just wondering if maybe your current dose is too high and it's taking time for what's already in your body to get used up??

Sorry, just throwing some guesses out there : )

Was the kidney stone resolved?

And what of the high calcium levels?

[birkie in reply to ling]

Hi

My diagnosis was hyperthiyroidism then I had a up take scan and bloods again then was diagnosed with graves...saw my surgeon on Monday had hyper symptoms to which he said maby your meds are to high we will take blood today and I will contact you when I receive the results...to be honest I'm sure I'm attacking parts of my body I scratch till I bleed and have welts raised bumps where I've scratched I can write on my skin.the hospital said I'd passed the stone I had blood in my urine..and was in hospital the end of 2016 vometing blood and passing blood but no cause could be found..the raised calcium levels were found after I had bloods taken when I was in hospital with the kidney stones they knew I had TT and told me to tell my surgeon,I rang on Wednesday and Thursday this week to find out about my bloods and to mention the calcium but no one got back to me...😡😡

[ling in reply to birkie]

Man! What's the matter with these people???! #

So kidney stone passed out, so non issue.

The raised calcium level MUST be conveyed to the surgeon whatever it takes. Hopefully, it's not related to the surgery.

How long do blood test results take to come out?

Re the itching and scratching. Could you go see your GP in the meantime, you see if something can be done to lessen the itch?

[birkie in reply to ling]

Hi thanks for the reply...my GP has seen the scratches and the welts he gave me antihistamine tablets they don't work..I'm sure the skin writing thing is auto immune to...I think the raised calcium is making me feel sick I had overactive parathiyroid glands in 2004 and felt the same but no one seems to care since leaving hospital on the 9th of May 2019 ive seen my surgeon once after six weeks I had to ring to find out if I should have my bloods checked after being on levo for that time..I'm sure my bloods should be back by now....I'm just sick of having to chase them up still recovering from kidney pain and TT...😭😭😭😭

[Batty1 in reply to birkie]

Hi Burkie, just a month ago I ended up in emergency room with hives that were so bad the emergency room doctor was shocked. I had so many hives in my head that my head was swollen...anyway he gave me antihistamines and prednisone and within a few days they went away.

I can't prove it but I think it has something to do with my thyroid levels (I'm thyroidless) and I've gotten hives off and on since I lost my thyroid but not as severe as this last time.

[birkie in reply to Batty1]

Hi batty 1

That sounds awfull I've not had the itch in my head just on legs,arms,chest,back..and it started with my thiyroid problems at first GP said it was due to the menupause.......really...I had TT this may but itching is still causing problems my legs look like a cat has attacked me..I think it's to do with anti bodies I have taken antihistamine but the itch always returns even if I've taken the meds..its awfull especially in summer I can't show my legs or arms...😭😭😭😭

[Batty1 in reply to birkie]

Hi birkie, Has your doctor put you on prednisone and histamines together? If not you should ask about the medication combo it does work. I took 40mg of pred a day along with antihistamine. My hives pretty much covered my upper body but my head resembled elephant man it was freaky.

[birkie in reply to ling]

Fgot to say I'm on 125mg levo

[birkie in reply to birkie]

Hi

I was on prednisone when in hospital in Jan this year with thiyroid Storm I came home and took another 2 weeks worth then my GP took me off them saying you can't be on steroids long..he has never really bothered and knows I'm still having problems with the itching it's so tough trying to get threw to my GP..it's taken him over 4 years to diagnose me with hyperthiyroidism/ graves but I'm at the point now where I think something should be done because some of the scratches are deep..😢😢

[Greekchick in reply to birkie]

ling Batty1

Hello all! ling, I saw your mention this morning and so I am responding to birkie and I also saw Batty1's message about her hives and how they were resolved. She had a clued-in doctor who helped her out.

So birkie, I had hives starting 4 days after surgery and they were all over my body, and to inject a bit of humor here, in places you would never imagine you could have hives. I took antiihistamines for them, but they kept coming back for awhile. The good news is they did resolve, but I will tell you my theory - and I became an experiment of one to see if my theory held. So bear with me - this is a long post and sorry in advance for all this information.

So, my surgeon told me when the thyroid is removed, they have to squeeze in order to remove it because it is so difficult to get it out. It releases whatever thyroxine is in there - and they don't really know how much that is. It can take several weeks for all that extra thyroxine to dissipate. In the meantime, they have you on levo straight from the hospital. So you have lots of extra hormone roaming around and this can be the cause of an immune response. I had terrible hives.

The other thing that happened to me was that every time they would change my levo dose, I would get hives again! My endo suggested alternating doses at one point - I know it works well for some people but it was a disaster for me. Hives came back with a vengenance. My body did not like the fluctuation of levo and I think this is one reason the hives kept coming back. We stopped that and the hives abruptly stopped coming.

So, ladies (and if there are gents reading), I think that early on after surgery when the thyroid is removed, there are probably some of us who are sensitive to the quantity of levo into our bodies - and I have a feeling Graves patients are particularly at risk for this because we already have highly tuned immune responses. I had allergies and asthma since I was 3 years old - and I believe but cannot prove that this is the reason for my hive attack after surgery.

I read the Boohesnah post and I agree with her - you need to ask MD to measure your Tg, and TRab ASAP - my endo immediately ran these tests when I was having problems adjusting to the levo and kept developing hives. Thankfully, no antibodies in my case at that time, but these need to be checked out. Just because your thyroid is out, doesn't mean you cannot still have an autoimmune attack. This has been explained to be by my endo - and the reason is explained below.

The reason is this - a skilled thyroid surgeon usually gets all the thyroid tissue out. However, there can be microscopic traces of tissue left behind. This is sufficient to trigger autoimmune responses that include hives, etc. Please check my post on hives and Graves - I posted an article specifically written about the occurence of hives in Graves patients. It may explain why this is happening to you and after I read it I didn't feel like I was going crazy.

As great as my surgeon and endo are (and I receive first class care), their initial response to the hives was a sympathetic, "well, weird stuff happens to your body after a TT". BUT - they did not ignore my symptoms and did everything they could to help me immediately (and my problem resolved quickly), but most docs are unaccustomed to dealing with patients like us. We are what they call "zebras" in medical school - and they are specifically trained NOT to look for zebras. We have strange reactions to meds, do not necessarily present with the "right" symptoms immediately, etc. etc. For example, My husband's best friend is a thyroid surgeon in another country, and he told my husband they were wasting time looking at my T3 after surgery - only TSH counted and I should only need levo. I have sent him numerous scientific articles about why this is incorrect, however, he persists in this belief. He is clearly incorrect, but you get the picture here, right? This point has been raised hundreds of times on this forum, so I apologize again for repeating this.

Now - it also may have to do with the brand of levo you are on - and forgive me, I haven't had time to read all the posts yet today - but if this has been suggested to you, sorry for repeating. Also, Batty1 is right - given the extreme case of hives you have, a very short course of prednisone will not hurt you. Steroids can be dangerous in the long term, but not for the immediate relief of an immune response. When my husband had his pituitary tumor removed two years ago, he was on steroids for over a year and he is perfectly fine. You need a short course to knock out the immune response. You might be better off with an allergist at this point for the hives than the guy who is treating you. In fact, at one point my endo suggested we involve my allergist in trying to solve the hives problem. Your doc doesn't seem to understand the concept of the immune response and how to deal with it. Sometimes antihistiamines are just not enough. Maybe you should bring him a copy of the article I posted as a reference if he is not too sensitive about receiving information.

On another topic, I had kidney stones 2 years ago before my TT from too much calcium (I managed to catch the stones and they were analyzed - pure 100% calcium). You should be checked immediately for calcium levels. My urologist told me that calcium is a major cause in women of kidney stones.

I'm so sorry, birkie that this is happening to you. I know exactly how you feel. I had one single hive that was the size of my thigh and full of fluid. I couldn't even scratch the ones that were in unmentionable places. It is really a nightmare. And, all this while trying to recover from major surgery. There is really no more I can say.

I hope this info has been helpful to you, and I am sending you as much good energy as I can through this post.

[birkie in reply to Greekchick]

Hi Greekchik

Thanks for that info I really appreciate it..firstly I've been on steroids a number of times whilst suffering these past 4/5 years been hospitalised several times every time they gave me steroids I became better quickly...I was in for passing blood and vometing blood..no diagnosis...had thiyroid Storm..got steroids then to..I must say I felt the best I ever had when I was on them.I had that blue card the longest I was on them was due to passing blood both ends it was about 3 months I felt well the best I've ever felt ,then I was taken off them..all my horrid symptoms returned..again was on them in Jan this year(thiyroid Storm) and started to feel well but was taken off them after 2 weeks...I will mention this to my doctor but to be honest his not the best it's taken him over 4 years to diagnose me with hyperthiyroidism / graves...that's why my thiyroid went toxic...I was in hospital on Monday taken in for kidney stones they did blood work and told me my calcium levels were raised and to mention this to my surgeon I rang his secretary to convey this on Wednesday and Thursday but no word back.

I feel as if I'm just being left to deal with this alone with not much help from the surgeon,endos,and doctors,,what bugs me the most is before my op I was told I would be looked after closely by all my medical team to ensure my wellbeing....what the hell happened? I even had to ring up my surgeon to ask if I should not be having blood work as I have been on levo for over six weeks now...and I saw him on Monday afternoon to have that blood work done he noticed all my symptoms were still hyper he said maby your on to much levo..(I'm on 125mg) he prescribed that amount on me leaving hospital after my TT...he said he would contact me when the bloods come back....I know my calcium is raised because I was taken in on Monday nite with kidney pain and they did bloods then..so seems to me no one is bothering about me....😡😡😡 a big thank you for helping me ❤️

[Greekchick in reply to birkie]

Hi birkie,

I’ll answer both your posts here. So you have antibodies post surgery. My guess is there is thyroid tissue in there somewhere. For what it is worth, here’s what I think.

I think you and I had our TTs close in time to one another. I am due for an ultrasound of the neck at the 6 month point. I would suggest asking your surgeon (who seems to have been unhelpful to say the least) for an ultrasound to see if any tissue is left. This may be triggering your Graves and the hives.

Now, I am not sure what can be done about that. I am sending my endo in 2 weeks and I will ask him - I’ll report back to you what he says.

Is there anyone on your medical team you can call other than the surgeon? Is there a team coordinator? I don’t know how it works in the UK - so I don’t know what you have access to. But I would call as many people as you can who were involved with your surgery or if you are well enough, go to the office in person. Sometimes I have found showing up helps because they can’t ignore you when you are standing right there! I know you are really suffering so that may not be something you want to do, but I don’t know what else to suggest. You have every right to be furious. You have been let down by your doctors and shame on them.

Big hugs to you from across the pond. 🤗

[birkie in reply to Greekchick]

Hi again Greekchick and thanks for the response my team after my op consists of my surgeon,endo(who I will tell you as quick as I can diagnosed me with lymphoma as my Bowles were inflamed pretty bad I knew it was the anti thiyroid meds..was on carb..taken off by heart specialist who said I had a bad reaction to it then put on PTU to which I was very ill inflammation in stomach and Bowles vometing up shot I went in to thiyroid Storm as I mentioned..but endo refused to believe me said he has never seen a case of anyone having a bad reaction to anti thiyroid meds..so lymphoma was his diagnosis,said this without me having a bowle scan..I did have a scan in hospital which did show server inflammation given steroids..went back 3 weeks later for camera in back passage diagnosis no lymphoma 😡 I can tell you I was really worried for those 3 weeks so not a very good endo me thinks😡) my doctor as I said is no better so my only option is to go to the person who did the op my surgeon and it's very hard to get a hold of him but I'm sure I should still be under his care as I'm not coping very well with the meds

Again thanks for your advice I do apriciated it I hope you are feeling ok I'm sorry for not asking before but I'm so swept up in this at the moment

Best wishes Karen ❤️❤️

[Greekchick in reply to birkie]

Dear birkie,

Just take care of yourself, and sending lots of prayers your way 🙏🏻

[birkie in reply to Greekchick]

I don't think I mentioned this but I did have my blood done for auto immune and it was positive...so do the anti bodies remain with us forever...🤔🤔

[ling in reply to Greekchick]

Marvellous my dear.

Thank you!!

[ling in reply to birkie]

What was the prednisone for in Jan?

What are your symptoms for overactive parathyroid glands?

[birkie in reply to ling]

Hi

Was put on carb after being diagnosed with hyperthiyroidism unfortunately I had a bad reaction to it had traciycadia took off it put on PTU to which my stomach and Bowles became inflamed I vometed constantly on it so it didn't work went in to thiyroid Storm taken in hospital put on intravenous steroids as I could not keep anything down...I had overactive parathiyroid glands in 2004 my symptoms were slight tremor,fast heart rate nausea urinating a lot total exhaustion as I feel now similar symptoms to hyperthiyroidism 🤔🤔

[ling in reply to birkie]

This thing with the parathyroid, you should raise it with the surgeon or endo. It could be hypercalcemia. It needs to be looked into as it has some pretty serious symptoms

[birkie in reply to ling]

Hi

After the hospital did bloods when I was in with the kidney stones they told me about the raised calcium.i rang my surgeons secretary on wed and Thursday with no reply back from him..😡

[ling in reply to birkie]

If it's hypercalcemia, it could be adding to the hyper symptoms. Fast heart rate, heart rhythm issues, frequent urination, nausea vomiting, difficulty thinking, etc. Some symptoms very similar to ones to do with thyroid.

[birkie in reply to ling]

Hi

As you can guess I'm still awake it's 2-46 in the morning I'm exhausted but can't sleep..tbh I thought after my TT I wouldn't have these symptoms anymore but I'm hyper as ever..after theTT my surgeon said everything went well my parathiyroids were ok no damage..I was put on calcium tablets chewable type when I came home vit D to..was told to take them for 2weeks then cease taking them vit D to...I'm hoping to get in touch with my surgeon today but I have to go through his secretary who's suppose to pass my messages on to him..no word on my bloods since Monday last week..😡😡

[Greekchick in reply to birkie]

Hi birkie

I’m so sorry you’re still awake and can’t sleep. Let me ask you - How high were your TraB antibodies? Do you remember the number and the range? I know you said you still had antibodies , but were they very high? Also, ling makes a lot of sense what she says. Maybe it’s your calcium level. I hope they figure this out - I feel so bad for you.

[birkie in reply to Greekchick]

Hi again..I've just looked at my paperwork my traB antibodies were done in Feb this year I don't appear to have the results but I can remember my endo saying they were high..hence the thiyroid being toxic he said my thiyroid was being attacked badly and my thiyroid would need to come out..I am today rining my surgeons secretary I am going to ask for all print outs of blood work done from Jan this year to the present...I do have some numbers on my calcium as the nurse who was looking after me on amblutory care...don't know if I've spelt that rite🤔 Gave me them to convey this to my surgeon which I have done...TCA..2.70.....ACI...or AD CA..2.67. Can't understand her writing I have no idear what these mean..🤔🤔🤔

[Greekchick in reply to birkie]

Ok birkie, keep us posted - and when you get your calcium results let us know with the ranges included too- maybe we can help. Hope you are sleeping by now if you are able. All the best.

[Catseyes235 in reply to birkie]

Sorry to hear your feeling bad ...it’s a long hard road to recovery and I’d say patience needed before you get to optimal levels. Tremors sound like you are hyper and I also went overactive for a while when thyroxine gradually increased before dropped back to 150 mcg which I was on for 25 years no problem. Now dropped back to 125. No, you can not live without thyroid replacement and there are so many strange feelings associated it’s easy to blame the meds rather than something else or it may be just part of getting back to ‘normal’. My own feeling is the longer your thyroid has remained out of synch the longer it takes to fix but there is light at the end of the tunnel.

Good luck

[birkie in reply to Catseyes235]

What puzzles me is I don't have a thiyroid now..so how can I go overactive that's why I had theTT it was toxic..I feel the same almost like its never been removed...all my symptoms were due to hyperthiyroidism/ graves and I still have them I'm not attacking my thiyroid coz I don't have one...totally confused...😫😫😫

[RedApple Administrator in reply to birkie]

birkie, some people (medics included) say that you're overactive when what they really mean is that you're over medicated.

Overactive is a term used for when the thyroid itself is producing too much hormone. Over medicated is when you have too much thyroid hormone as a result of taking thyroid medication.

It may be that you need to be on a lower dose of levothyroxine.

[birkie in reply to RedApple]

Hi redapple

My surgeon prescribed 125mg levo on me leaving hospital I've been on this for 7 weeks I feel hyper...tremors,fast heart the works..on Monday last wk I had bloods taken at my 6 wk app for which I had to ring my surgeon to ask if I should not be having them by now...anyway..ad bloods done surgeon said maby your on to high dose when I get blood work bk I will contact you.. Monday rang his secretary for results nothing so far..was admitted to hospital same day with kidney stones my calcium was raised I informed his secretary of this for it to be conveyed to my surgeon so far nothing I am as we type trying to get in touch with his secretary now tried twice so far but she's not answering...he knows about my hyper symptoms he noted it at my app with him..😡😡

[RedApple Administrator in reply to birkie]

Well I'm not medically qualified, so cannot tell you what to do. But if it was me, I would do this:

Not take any levothyroxine for a couple of days. On the third day, drop the dose by 25mcg (i.e. just take 100mcg) daily for a week. See how you feel on that. If you feel better, continue on the lower dose for a while, at least until you have heard back about your thyroid test results.

[birkie in reply to RedApple]

Hi redapple thanks for your help just ad my surgeon on the phone at last he recommends I drop down to 100mg for six weeks then re-bloods..I hope this gives me some relief these symptoms of hyper are awfull especially after having them for over 4 years..😭😭😭

[Catseyes235 in reply to birkie]

You're replacing what your thyroid produced so your medication replicates the same symptoms of hyper or hypo. I and my daughter and brother had RAI so no thyroid between us but still same symptoms and what you look for is a balance ...and that really does take time.

[birkie in reply to Catseyes235]

Hi catseyes235

I totally understand what your saying but I've been fighting my GP for over 4 years telling him that this was not the menupause..finally in Sep 2018 I got my diagnosis from a new GP in my practice she saw right away it was my thiyroid I feel like my life has been put on hold long enough I was told once my thiyroid was removed all my symptoms would go and I would need to take thiyroxine and that was that...I hope this can resolved quicker than it took to diagnose me. Mentally and physically I don't think I can go on much longer like this I have no life anymore...😢😢😢

[birkie]

Hi again sorry got to say I have graves to...dam brain fog....😡😡😡

[Catseyes235 in reply to birkie]

You will get your life back...I was not diagnosed for 7 years probably more if I go back through my symptoms. Block and replace failed then after RAI some bright spark endo decided there were too many blood tests taken despite me saying I felt I was going under. I then slid into horrendous hypo symptoms much worse than before (luckily doc recognised my low slurry speech as hypo) and took years to slowly rebuild myself, mentally, physically and emotionally. I have since taken a degree course in 40’s took HRT for ten years and have been pretty okay apart from the having TED. (Amnother chaoter) There is light at the end of the tunnel ... hope you get there soon but you have to be patient.

[birkie in reply to Catseyes235]

Hi

Thank you for the reply looking bk it was prob longer than over 4 years but the last 2 have been the roughest. I've been in and out of hospital with illness to which no diagnosis could be found only guesses.. I can't function as normal most of my days were and are still confined to my flat or bed.. Its no life.. As you say I have to just be patient and wait my tunnel is still pich black hope I see some light soon.. Thank you ❤️❤️

[Boohesnah]

Please dont let them stop your meds without checking your trab’s (antibody status) they need to be undetectable or less than 0.9. If you still have antibodies you will very likely bounce back hyper again.

Better to stay on a low maintenance dose (and possibly tiny add back of T4) longer until those antibodies are gone than play russian roulette by stopping treatment. The endos know this, It’s not fair that they dont always do it.

You are more likely (a lot more) to stay in remission long term.

(Im in antibody remission)

There’s absolutely no reason you cant stay on Carbimazole long term if you tolerate it well. Saying you have to make a choice between rai or tt is wrong. Its simply to get you off the endos list.

Ask the endo why you cant stay on it long term. If they say its a dangerous drug, (its been in use of over 50yrs) ask them what the stats are on the ‘dangers’ in long term use.

The evidence is that the dangers are in the first few weeks and at higher doses and its very, very rare. There simply don’t have the evidence to say its dangerous long term and its been in use for decades so there ought to be plenty kf documented evidence. But there just isn't.

[Fruitandnutcase in reply to Boohesnah]

Gosh Boohesnah, I could have written your last three paragraphs myself! Especially the bit about wanting to get you off the endo’s list. I always felt that was why rai was mentioned to me plus I felt very well on my block and replace.

[Ginger-bread in reply to Fruitandnutcase]

And yes I felt fine on block and replace too.

[Ginger-bread in reply to Boohesnah]

I don’t want to stop the meds, my consultant isn’t very nice at all, I went back to my gp last week and told him all this, but the endo has emailed my doctor and told him not to interfere now in my meds and bloods, and he’s been a great doctor helping me with everything he possibly could In the last 18 months, so if I feel like I’m going hyper again Ive got to ring the endrocrine department and ask them for bloods doing, it’s a right carry on.

[Boohesnah in reply to Ginger-bread]

They cant Make you stop and if you feel well on the drug treatment then that surely is the aim? To stop the awful symptoms.... i would go back to the endo and insist on the trab test. Its your body, your health and theres no reason for the endo to treat you like a child in all this. I cant copy and past the links to the pub med research here, but kf you google ‘pub med long term use of carbimazole remission trab’ it will give you lots of links with all the research and meta analyses (2017) to take to your endo and your GP. Ot makes me very cross how they bully people i to ‘definitive treatment’ when it is not always necessary. It should be a last resort treatment only. Treatment should be collaborative, informed and consenting. If you feel well on treatment that's great, hopefully those trab's are very low and at remission levels and its ok to stop, but why on Earth would they guess at that? Its a simple blood test.

[Valarian in reply to Boohesnah]

I agree with you up to a point...staying on carbimazole long-term may be fine if your thyroid levels are reasonably stable, and can be controlled with a reasonably low dose of carbimazole.

However, there are also other considerations, especially if thyroid levels cannot be well-controlled. Many of us with Graves’ get used to our hearts thumping away at an increased rate, but that doesn’t make it a healthy way to live, especially as we grow older, or if we already have heart issues. Most people who’ve been well over range for any length of time never want to go there again, and for some the thought of this happening (especially if thyroid levels aren’t well-controlled with anti-thyroids) will be enough for them to prefer a definitive approach. Women hoping to start a family, or anyone travelling regularly to countries without access to first world healthcare will also have other factors to weigh up.

I’m happily continuing with anti-thyroids for the present, but am not sure the fact they’ve been around for so long means everything is known about them...would the tests conducted 50 years ago have been sufficiently rigorous to meet modern standards, and if not, has sufficient research been conducted since to compensate for this ? (And yes, the same point probably applies to RAI !)

[Boohesnah in reply to Valarian]

Yes the aim is to stabilise blood results. Most people feel well when their ft3 and ft4 are in the middle of the range or slightly above.

It takes some people longer than others to get there. (It took me 16months to get there and longer for my TSH, and 3 and a half years to titrate the dose down to 5mgs.

For some 5 mgs will still be too much and they might need a tiny dose of ft4 to balance things and prevent hypo symptoms.

I was told by a professor of endocrinology (i quote) ‘40 years experience’ that my ‘disease to to hard to control and too severe qnd that it was highly unlikely i would reach remission and i needed to have TT or RAi. He was wrong and so was the second consultant who agreed with him. My Ft4 was over 88. I was extremely symptomatic. It can be done, but it takes much longer than they allow.

There is a great deal of information on pub med about the long term use and as its been around so long, theres good evidence too.

For me, it was a better option than playing russian roulette with TT or RAI. Too many stories of people feeling very unwell after Tt and Rai. Its the immune system and the disease causing antibodies that need dealing with. The thyroid is the victim of the disease and not the cause.

I also found cutting out any processed food and basically following a ‘clever guts’ type diet low in carbs and adding Selenium and vit D to my diet also helped repair the damage caused by the hyper symptoms and heal my body. Its not an easy road.

[birkie in reply to Boohesnah]

Hi boohesnah

I totally agree with you on the fact it's the immune system that need sorting I've been saying this to my GP for years I knew I had graves before he even did as I kept records of how I felt I knew when my thiyroid was being attaked they were flare ups,this went on for over 4 years with me going bk and forth to my GP he said its the menupause....I knew it wasn't..anyway I was right but my anti bodies had attaked my thiyroid for such a long time I went toxic and it had to come out...I know I'm still attaking parts of my body even now.i know about anti body suppressants but not sure if gps will prescribe them or if they are even safe..I have osteoarthritis,rhumertoid to and now graves I can also write on my skin which I know is an auto immune illness..why do endos,,gps not tackle this...😡😡😡

[ling in reply to Valarian]

Will ditto that.

Graves is not an easy disease to control. Your bloods can be in range, you can be euthyroid, and consistently taking your medication, and still be experiencing a variety of symptoms over the course of the disease, that leave you wondering, if you stuck it out long term, would you maybe end up with a stroke or suffer a thyroid storm or develop other autoimmune conditions? There's no easy answer.

[nothyroidnorm]

thyroid meds are normally in mcg (micrograms), not mg (milligrams) I think you must me grossly overdosing?