OFF CARBIMAZOLE

[NIKEGIRL]

Hi. I came off my carbimazole. I am tired of feeling sick and having headaches and altered taste. My GP and I are at am impass I feel. He says “you need to carbimazole” and I agree but I want to go to see a psychologist to help my thoughts and feelings around the last 6 years of dramatic events. I am just going around in circles and wasting peoples time. GP won’t do a psychologist referral so I will have to find my own psychological help. I’m ok. Psychologist can’t solve my problems but they can help give real help other than talking. I have borderline PTSD from what happened in the last 6 years. This is hard. Thank you for all the support I have received from all the good people here. I don’t feel so lonely. 🥰

[pennyannie]

Hey there

Totally " get it " :

You can talk it out here if it helps and even talking it out with yourself, and writing stuff out, helps put things into perspective and is cathartic.

You are not wasting anybody's time, it's all all part of the healing process :

Take good care and make space for yourself :

[NIKEGIRL in reply to pennyannie]

I hope u r well. I think of you often and I hope your is behaving itself.Thank you for being so kind and understanding. I know the GP is right but I have no professional support from month to month when I do the blood tests I’m all alone with my thoughts and feelings. need to see someone every two weeks just to check in and keep me accountable and focused and let me know I am normal and doing a good job. I have a lot of guilt. I had two emotional breakdowns yesterday because I have a hospital appt on Monday. On Monday I will cry on the way to the hospital, in the car park and sitting waiting for a consultant to see me and probably during the appt. I normally plead to go back home with the person accompanying me to the hospital appt. I can’t go to the hospital Monday. I need help to deal with this and once I can manage myself then I can get better.

[Lora7again in reply to NIKEGIRL]

Can I just say that I was told I had bipolar when infact it was this disease. I had no support from the NHS just the advice to have my thyroid removed or RAI by my Endocrinologist. This disease is poorly treated and I don't think many Endocrinologists have much idea what to do to or how to treat it. This is why I decided to look after myself and take advice from Elaine Moore and others going through something similar. Give yourself time and try to avoid stress because that makes this condition a lot worse.

[NIKEGIRL in reply to Lora7again]

Thank you for your message. I am trying to be kind to myself. I’m like you I hope it’s ok to say that I won’t being any RAI or surgery. These are not purposeful solutions. Everything will be ok. I need more support from professionals. I’m sorry you got labelled bipolar. That wouldn’t have been very nice.

[Bellazzurra in reply to Lora7again]

I totally agree. I’ve been under a fair bit of stress for the past couple of weeks and yesterday, I could feel myself starting to unravel mentally again (after months of doing so well). I feel like I’ll go into a crying spell any moment and I’m wide awake even though I’m tired and it’s too early to be up. I’m sure it has to do with the stress more than anything. This condition and stress do not mix very well. The trouble is that regular life comes with its own stressors and it’s hard to escape them all the time.

[pennyannie in reply to NIKEGIRL]

Hey there - what is the time - breakfast time for you my girl:

Graves messes with everything and you need to try and ride this phase out in which ever way makes sense for you. you are fortunate some one is there to take you back and forth and offer support.

Can you off load to your husband ?

You won't be able to manage yourself if you come off the medication - it's a crutch that you may not like but that you currently need :

What is the appointment on Monday for ?

If you don't go, can you reschedule, and what are the repercussions of a no show ?

You are normal and doing as good a job as you can at the moment - forgive yourself for being unwell and kick that guilt out of the grandstand, with those Nike trainers on your feet.

You can do what you can and then you must say no - and stop giving yourself a hard time for saying how you feel as it's been bottled up for too many years and why you are now here talking to another " Yes, smile and can do person, even when heartbroken and ill ".

[NIKEGIRL in reply to pennyannie]

You are so funny with the Nike trainers comment. I only wear Nike shoes and clothes. Yes it is breakfast time. Nearly bedtime for you.

I have a lot and I mean a lot of guilt around the tumours for my daughter. Did my DNA contribute to her tumours and watching the suffering she endured daily as a 14 year old girl rolling on the floor holding her arm and there was no pain relief and then leaving her to go to work when really she needed me. For my son I carry the guilt of could I have done more faster for him. I listened to him talk about suicide and would worry everyday for a week before his surgery that he would get bumped off the surgery list because he said he would kill himself if he did. He didn’t but I carried that with me and even this year he talked about suicide when he was on prescription drugs for nerve damage in his hip from an accident 5 years prior. I told the specialist he was threatening suicide but they said he wasn’t on a high enough dose. The information pack with the drugs said that these drugs cause suicidal feelings. I wanted to call the dr and say you get around to my house because my son is threatening to kill himself. My son got reported to a suicidal service. No one ever called for him.

Monday is a cardiologist appt for a holter monitor for my heart. I’ve been getting palpitations also AF and supra ventricular tachycardia but that was induced by cold and flu tablets. I don’t want to waste peoples time in the sense that the result will say tachycardia and ultimately if I took the carbimazole then this wouldn’t happen. That’s why I don’t want to go. Essentially the solution is take the carbimazole. Also I have a few breakdowns emotionally and I can’t face going to the hospital. I end up crying waiting for the appt and want to go home. I feel physically sick and my heart rate gets even faster and I sweat.

I was goi g to ring the hospital on Monday and say could they discharge me because I’m dealing with trauma and at this time I cannot attend any appts. I would get discharged but at least I would have been honest and not wasting peoples time.

My husband has been good. I am just burnt out and this is more than I can handle.

I need some professional help.

Nearly time for your bed 😴

[pennyannie in reply to NIKEGIRL]

I think you need to do what makes sense for you - otherwise you will feel cornered and up against that brick wall and feeling as though you are waiting for a firing squad, and being anxious and nervous will drive your own Graves and this isn't conducive to your recovery.

A psychologists makes sense and you know you are ready and wanting to go this route so a double positive.

Is the an option to switch to another anti thyroid medication because it doesn't seem to agree with you ?

I think we spoke on this before and there is PTU - Propylthiouracil ?

Yes I need to switch off - I'll watch some absolutely unadulterated, unpretentious trash on the TV . and hit the wooden hills as I generally conk out like a 1947 vintage engine by around 10 pm.

[NIKEGIRL in reply to pennyannie]

Sleep well. No one is offering PTU. Hence being stuck. The only change is one I will effect. Big sigh. Kindest regards always

[NIKEGIRL in reply to pennyannie]

I hope your car is behaving itself

[pennyannie in reply to NIKEGIRL]

Ah, the car windscreen wipers :

so it wasn't as I thought as for this model car 2006 Nissan Micra Urban automatic - the whole set of wipers needed to be removed together as it's a central mechanism ???

So, over that proverbial barrel again and paid treble what I thought !!!

Please don't say anything like could have, would have :

It's done, they work, and had plenty of practice already and the car goes :

I know it's an age but had a very low mileage when I purchased a couple of years ago and finances came into play, as I am on a pension.

I'm needing to close down now otherwise I'll not wind down enough to sleep well - speak my tomorrow if you're around ??

[NIKEGIRL in reply to pennyannie]

I most certainly would not judge you on the choice of car or age of car you have. I have a year 2000 Toyota rav. Cars breakdown that’s it really. Getting them fixed is always more than you budget for. Sleep well and thank you 🥰

[pennyannie in reply to NIKEGIRL]

Hey No - I'm not bothered but it just seems funny writing that my new car is a 2006 plate and already 14 years old.

I think it must have been in a garage somewhere for most of that time however as it is looking good and with low mileage whereas I have been out and about and knocked around a bit with a high mileage !!

[NIKEGIRL in reply to pennyannie]

Age of the car doesn’t matter so long as she runs. I hope u r well and managing COVID ok

[Lora7again]

I stopped PTU cold turkey and I then went into 4 years of remission. I did have to take a low dose of Levothyroxine for a while because Elaine Moore advised you can have a period of being underactive after stopping. I would have another blood test in a month to check what your levels are doing. After reading about all the horrible side affects I didn't want to take it any longer. This is my opinion but I don't think the NHS guidelines give a good indication of how I am actually feeling. My TSH is probably a bit low and my T4 is top of the range but this suits me and I have no intention of getting a doctor involved because I know they will want to monitor me and if any of my levels go over range again they will want me to take something for it. If I think I am going extremely hyper of course I will have to take something but they left me for 2 years when my TSH was 0.002 and my T4 was in the 40s and I think my T3 was 18 and did nothing to help me.

[NIKEGIRL in reply to Lora7again]

Thank you for your understanding. I am not in remission. I don’t want to do another blood test only because the result will be worse than last months and more symptoms have come back. I just feel I am wasting people’s time. I was saying to Pennie Annie I have very little support from professionals and go from month to month without seeing anyone for support and I need that. If I was your normal patient that would be ok just bumbling along month to month but my experience doesn’t make me normal. I think getting a psychologist on board will help with the guilt I have and the avoiding behaviour I have. Even I think I am an arsehole. A Psychologist can’t solve my problems but can help with tools and cognitive behavioural therapy. Thank you for letting me speak so openly without being hated. I was really worried I would get hate messages. I really need love right now, even self love. Thank you. I sincerely hope this finds you well.

[ling]

Certainly it's good to address the issues of the past 6 years. However, they have resulted in your present state of poor heath which needs to be addressed as well.

Given your high antibodies levels, which would mean u potentially have both Graves and Hashimoto's, it's no wonder u do not feel well. In this regard, its sad to hear u are giving up addressing these conditions which in the medium to long term, left unchecked, could deteriorate your health further

: (

[NIKEGIRL]

Hi Ling. You are right the last 6 years have resulted in Graves’ disease and I feel that is a slap in the face to me. The second slap on the other cheek is that I have to pay for the psychology from my own money because the GP won’t do a referral even though the psychiatrist said I would benefit from psychology. This feels like another failure. No one really cares. Like I did not have to deal other enough but I now have an illness that needs 18 months of appts. I am burnt out. I have nothing left to give but I can’t afford to give up.. I feel very cornered. This for me is my worst nightmare. I have to trust doctors with my health and I don’t trust doctors after my experience with my son. When I take the carbimazole and feel physically sick I just give up. I don’t have the resilience to go on. I think getting a psychologist on board will help me process my thoughts and feelings so that I have the support I need to get well again. This is hard. Very hard. I do appreciate your message and you are right and I am trying to work out a path to get well.Kindest regards always

[ling in reply to NIKEGIRL]

Sorry, didn't see your message earlier. The board's acting up again and your reply went to the general thread : (

Is it possible to see another GP for the psychology referral?

Yes, don't give up. Nobody can care about you as much as u can care about yourself.

Giving up on the carbimazole is tantamount to giving up on yourself. Don't do that to yourself

[NIKEGIRL]

I’ve thought about asking to see the Endo again and wondered if they would do a psychologist referral. The carbimazole makes me feel sick, gives headaches and alters taste so it’s hard to stick too this drug when u feel unwell physically as well as psychologically. It’s hard. Thank you for your support

[ling in reply to NIKEGIRL]

Yes! That's a good idea worth a try.

Do also get the endo to assess you for Hashimoto's. If it's really Graves and Hashimoto's, the endo should be treating with a perspective on both conditions and the treatment for hashis is not with carbimazole, though carbi might have to be taken initially to deal with the Graves if it is currently dominant, or was that exacerbated by the recent flu bout?

[NIKEGIRL in reply to ling]

I have Graves symptoms. GP is not doing any referral to Endo and even when I talked to the GP on Friday he did not recommend seeing Endo. From what I have read a lot of people have Graves and Hashimoto antibodies. I don’t know. I will get my own psychology and sort out my psychological issues. Thank you again for your support

[ling in reply to NIKEGIRL]

Hashimoto's has hyper flares as well, the symptoms of which are hyper in nature, and doctors are often misled into misdiagnosing hyperthyroidism.

Again, just wondering if u are able to see a different GP.

In any case, I should stop and not badger and stress u further. My apologies. I pray u get the help u need and start feeling better soon. God bless u

[NIKEGIRL in reply to ling]

Morning. U r up with the birds. Firstly. You are not badgering me and u have not stressed me. My last blood tests were a month ago just 4 weeks ago and were as follows:

TSH <0.001

T4 42 range 0.5-4.0

T3 28.5 range 2.0-6.0

In 2014 I had just finished a bodybuilding competition by say 4 months. My TSH was 4.0. That is all I know. My body temp was 35.5 (my nickname was the ice queen, always cold and had been for a good few years). I had very low mood and felt suicidal. I was very fit so had the low heart rate and low blood pressure. I had a professional trainer and he struggled to get body weight off me, I mean struggled. I have always believed it was my thyroid and even today I believe that. This event resulted in me not bodybuilding and I had a breakdown of some sorts. I would go to work at 5.30am to 11am and then sleep from 1pm-4pm. I would wake up and my brain would be ok but my body was like stone. This went on for a year. I was totally depressed. I was diagnosed with adrenal fatigue because I refused to give up on why I was unwell. I had to investigate and pay for this diagnosis. I was out on antidepressants but to be ho eat they didn’t make me feel better or better. I still felt depressed. So maybe not the right ones.

I say all this because maybe I do have swings between the two. I don’t know? My blood has always been high and in fact will be higher than this because the tremor is back. I don’t know. All I know is I need someone professional to help me and support me because I go from month to month for blood tests with no support. I can’t do that I need more support than that.

In 2015 through to 2019 both my children ended up in hospital and had very serious health issues. Xrays got lost. Diagnosis were missed. The regional hospital declined to do surgery due to not enough money in the budget. Files got put down and not picked up again for 4 months and then phone calls saying we need u urgently tomorrow. I was in a major car accident. My husband had two surgeries. My husbands father died last year and this year he lost his job in COVID (he was the only

person to lose his job) and now my diagnosis. Its just so overwhelming. I have feelings of guilt. I am now avoiding hospitals as I have major anxiety. I think about what happened to my children everyday and I live on the edge wondering if either will end up back in hospital. My son has talked about suicide. The prescription drugs say suicidal tendencies but the dr says he’s not on a high enough dose. He came off the drugs and 4 weeks later the suicidal thoughts stopped. I just have no trust. It is gone. All gone.

I don’t say this to make you feel bad but rather what I went through has resulted in how I feel today and I feel trapped and burnt out. I know what I have is serious. I know I need the drugs but I feel very alone with little support.

I am grateful to Pennyannnie, Lora7again and yourself for the support. I was extremely worried I would get hate messages saying just take the drugs. Instead I have received support so thank you 🥰

[ling in reply to NIKEGIRL]

One thing's for sure. With results like that, it's way beyond most cases on this board, and far too complex for any of us to give any sort of advice.

It sounds also like thyroid issues were already present back in 2014. How many years was the body building, and did u have any health issues either back then or when u were younger?

What were you doing before body building?

[Lora7again in reply to ling]

Where do you suggest she goes for advice? I have been looking for the last 10 years and I haven't come across an Endocrinologist who has any idea how treat Graves' and all they recommend is either having your thyroid removed or RAI. I am so glad I ignored my Endo's advice and still have my thyroid after seeing how others are struggling to get the right treatment afterwards. I found more help and support on sites like this one and Elaine Moore's than I have ever found from the medical profession.

[NIKEGIRL in reply to Lora7again]

The first Endo is saw was brutal. I had a breakdown in the waiting room even before the appt. I was not a good person and got discharged from the hospital system. Second and current Endo was lovely. Essentially he elbow bumped me and said what a bag of shit u have been through. He was compassionate and that’s where he put me at ease. Essentially as you said though. It’s either RAI or have it out. I won’t be taking either of those options. I am just struggling and that’s ok. I have to make my own plans to seek help and that’s ok too. I’ve done this before. I want to thank you for the support you have shown and the advice given.

[NIKEGIRL in reply to ling]

I started in the gym in 2005. Competed in 2007. No problems with body fat coming off. Kept gyming again and got a professional trainer. Competed in 2013. This time it was very hard to get body fat off. I did an extreme diet. In 2014 had a complete breakdown. Body temp 35.5. Very cold person. Low mood. TSH came back as 4.0. Was told I was ok and suffering depression. No gym from 2015-2019. Even today no dr will admit my thyroid was in trouble in 2014. Was diagnosed with adrenal fatigue instead. What I got from GP and Endo is that this is the first time my thyroid is a problem. I disagree but that doesn’t matter. They hold all the power and what I felt and went through just doesn’t matter. How can you have trust if this is the view point. So long as you for the box of numbers you are ok and if u fit the box of numbers and are not ok then it’s something else and all in your head. That’s what I got told then and again in July.

[ling in reply to NIKEGIRL]

U dieted in 2013 to lose weight?

Did u have to diet as part of the gyming and body building training?

[NIKEGIRL in reply to ling]

Yes

[ling in reply to NIKEGIRL]

Anorexia, extreme dieting, are known to trigger thyroid conditions

[NIKEGIRL in reply to ling]

I think I was in trouble before 2014 that’s when I did a bodybuilding show and the body fat wouldn’t come off

[Lora7again in reply to NIKEGIRL]

I actually joined a body building forum to try to get some T3 because I was so desperate when my levels were too low because of taking too much PTU. Elaine Moore advised me to take Levothyroxine for a short time because some Graves' patients can have period of being underactive after treatment. My GP would not help so I had no choice. Eventually I ordered some Thyroid S which I took for about 6 months and that made me go into remission.

[NIKEGIRL in reply to ling]

What I would add is there was no official adrenal fatigue testing. And prior to 2013 I had been very cold for years. Hence the name Ice queen.

[ling in reply to NIKEGIRL]

WTF. No testing and diagnosed with adrenal fatigue??

[NIKEGIRL in reply to ling]

Yes

[ling in reply to NIKEGIRL]

Was this in UK or NZ?

[NIKEGIRL in reply to ling]

NZ

[ling in reply to NIKEGIRL]

What was the July appointment for?

What was the endo referring to with regards to TSH 8.0?

[NIKEGIRL in reply to ling]

I went to see the Endo for the first time. I said my TSH had been 4.0 in 3014. The Endo said they would only treat it when the TSH got to 8.0.

[ling in reply to NIKEGIRL]

What range are they using I wonder??

[NIKEGIRL in reply to ling]

I don’t known

[NIKEGIRL in reply to ling]

The July appt was my first ever Endo appt. the Endo said she would only treat a TSH at 8.0. Where mine was 4.0 in 2014.. The same Endo at that appt said the breakdown I had with a lot of the Hashimoto symptoms, she said it wasn’t my thyroid but rather it was something else. I only found out about the TSH4.0 this year from the herbalist I use as she kept my records from 2014. For me that Endo appt just formed up my belief that you are treated based on numbers and not symptoms. My body temp was 35.5 then and now I am 36.6. Yes there were problems in 2013 with regards getting body fat off to compete. I think the stress of 2015-2019 has just pushed my body. I don’t know what else to say. I’ve had a psychiatrist evaluation. Essentially they recommended psychology and I agree. I did psychology in 2014 when I was totally depressed but looking back I had a collection of hashi symptoms and was put on anti depressants. I do think going to the gym and competing contributed to the TSH of 4.0

[ling in reply to NIKEGIRL]

The Hashimoto's was diagnosed at this endo appointment?

[NIKEGIRL in reply to ling]

No. Graves confirmed

[ling in reply to NIKEGIRL]

Why do u say "Hashimoto symptoms"? as opposed to Graves symptoms

[ling in reply to NIKEGIRL]

TSH <0.001

T4 42 range 0.5-4.0

T3 28.5 range 2.0-6.0

Btw, given these results from 4 weeks ago, do u still feel cold?

[NIKEGIRL in reply to ling]

Yes these bloods are from 4 weeks ago as I haven’t had a blood test since then and I stopped taking the carbimazole then as well.

[NIKEGIRL in reply to ling]

Sorry. Just thinking about things. When my TSH was 4.0 in 2014 my feet were freezing that’s how I got my nickname. I went to see an Endo in July this year and she told me that they don’t treat TSH until it is 8.0. Yep I get it. I really do. This statement reinforced that I am being treated based on a number and not symptoms and that is what happened in 2014 and nothing has changed in 6 years. At this appt I lost all hope in getting well.

[pennyannie in reply to NIKEGIRL]

Excellent idea -wish I had thought of it :

[NIKEGIRL]

What do u think you had thought of?

[Lora7again in reply to NIKEGIRL]

I am just looking at your results and what I find strange is your T4 isn't as high as I thought it would be when you look at how high your T3 is. When my TSH was 0.002 my T4 was in the 40's my T3 was about 18?! Usually it takes a while for the T3 to go down and I think my T4 dropped before my T3. I still think you need to have a blood test just to check what they are now. I am not really an expert on Graves' but just do what feels right for me because we are all different. I did experience paranoia when my T3 was high and I know it was because my levels were too high. I would ask Elaine Moore about those results and see what she says because she has a lot of knowledge about Graves' and has helped me a lot in the past.

elaine-moore.com/

[pennyannie in reply to NIKEGIRL]

Good afternoon to you :

Asking the endo to refer you to a psychologist ?

" Looking back " - I've been living with several layers of stress and emotional hurt for many years.

I believe I was hypothyroidism from a very young age but it was never picked up :

Lefthanded, dyslexic, very heavy for my age, failing exams, losing my hair by 11 and feeling stupid, ashamed, being told I was awkward - need I go on with the these feelings of confusion , helplessness and vulnerability.

Rather than painting iodine on my balding hair patches, I now think I should have been taking iodine orally for my thyroid gland.

So with symptoms normal for me I soldiered on, as you do, and when other issues " popped up " I was felt I was wasting peoples time because there was generally no answer as to why this has or was happening to me.

Urticaria / sciatica / and in my 30's waking up with holes and tears in both my eyes necessitating emergency laser treatment at Moorfields Eye Hospital.

Finally in my 50's after loosing my father, mother and brother all within around a 6 year period I was attacked by a man I employed as my assistant manager and received a diagnosis of Graves Disease 4 months later, back in 2003, and followed the doctors instructions, having RAI thyroid ablation and then having a diagnosis of primary hypothyroidism.

I did experience hyper symptoms however when on the AT medication so accept this diagnosis though my main symptoms on diagnosis were insomnia, dry gritty eyes and exhaustion.

What am I trying to say - as I've lost the thread ??

I think over many years of living my life with all that it can throw at you, my body was at another all time low, broken and exhausted after much emotional upset and this " attack " was the straw that broke this camel's back, the final insult on my being, and resulted in a diagnosis of Graves and this brain / body dysfunction.

We are looking at an auto immune disease that mainstream medical science can diagnose but do not know how to treat.

There are suggestions there could be a genetic predisposition and put down stress and anxiety as the Graves triggers with the onus back on the patient to look at lifestyle / diet and all the environmental challenges that you can think of.

We live our lives as best we can, stress is inevitable, and situations are often influenced by circumstances outside of our control.

We need to be accepting of what we can and can't change, and being seen as the " strong one " and we tend to ignore the emotional and psychological implications and we do need to be accepting that we are simply human and as vulnerable as the next person.

P.S. - so I forgot the punch line which is that I always felt " better " when I visited a very famous ( back then ) private doctor in Harley Street and went back " on the diet " which included tablets and an injection in my bum - I was eating more than the diets I 'd always found myself on, and I lost weight but this also coincided with my finding it easier to read stuff, and my confidence grew :

Very much like how I find myself now dealing with hypothyroidism and taking Natural Desiccated Thyroid - me thinks - Maybe about 60 years too late of when I first went to a doctor ????

Which ever way round you go with this you're thyroid is out of control and not working or functioning in a manner to give you back ' you " :

You can't do this by yourself : you need medical help : and as much as the story above is about me coming full circle - we haven't the answers, we don't know everything ; and need to let go and trust the medics can control your thyroid hormone over production in the first instance so to give you a chance, back on an even keel, to see things more clearly.

[NIKEGIRL in reply to pennyannie]

I’m sorry you did not get the help you needed and by that I mean the failures along the way. Losing 3 very close family members in 6 years is devastating. I cannot imagine the path you have walked. Trust. One word. Something that has been eroded slowly and quietly and ultimately it will be slowly restored through help. I am diagnosed with trauma and have borderline/most likely PTSD. I have a lot of respect for you. You too have travelled the long hard road. I am not without hope but I am without support and that’s my job to find. I hope u will sleep well tonight and that the car is behaving herself.

[pennyannie in reply to NIKEGIRL]

The reason why I wrote all this out was to try and let you see similarities :

In that I believe I was hypothyroid long before a diagnosis of any thyroid malfunction: and undiagnosed from a very young age, and thought everybody felt as I did :

Everybody who lives a life goes through a multitude of experiences and some seem better able than others to deal and process psychological and emotional upset.

We don't all get the same issues to deal with and we learn to cope as best as we can with whatever life throws at us.

Having been diagnosed with Graves and having had RAI thyroid ablation automatically gave me a new diagnosis and that was primary hypothyroidism and I was put on Levothyroxine and felt ok :

When my thyroid finally gave up in around 2014 I suffered symptoms associated with RAI treatment and my brain and cognitive functions took a nose dive.

I have been self medicating for coming up to 2 years with full spectrum thyroid hormone replacement and my brain is back and I am as good as I think I'm ever going to be having gone through RAI - a treatment I deeply regret.

I then read about this " Ice Queen " who has had a melt down and now diagnosed with Graves and who suspects she was hypo before she became hyper - and was just confirming that I don't think that is as crazy as it sounds, as I can say " snap ' !!!

I now think that the private doctor was probably dolling out T4 thyroid hormone replacement - yes a wild assumption but I'm now feeling much like I did when paying hundreds of pounds to feel well and seem to have come full circle but it's taken me 50 odd years to get a prescription for what I believe I've been dealing with since childhood.

I don't know if this makes sense : and simply repeat you do now need to trust someone, as you can't do this by yourself, and you will be ok once your thyroid hormone levels drop back down to levels that restore a brain / body balance as you are currently on a roller coaster with no pedals or brakes.

[NIKEGIRL in reply to pennyannie]

Yes we have a lot of similarities. You are right and I do need to trust. I just dont know who that is. GP, Endo, Psychologist? It’s hard. Having said that yours was a harder road than mine ever was. I have a lot of respect for you and you have great strength. Love to u always ☺️

[pennyannie in reply to NIKEGIRL]

I have never experienced hyper symptoms at any levels of awfulness :

My Graves symptoms were exhaustion, dry gritty eyes and insomnia and the AT drugs resolved 2 out of 3 of these symptoms within a fortnight :

There's no point comparing anything as everybody's journey with Thyroid / Graves / Hashimoto's / Hypo is unique to them - maybe that's why it's seems so poorly understood and badly treated as there is no one size fits all text book understanding:

Whether your were hypo in 2014 or not , the fact is that now your immune system has malfunctioned and attacked your thyroid and rendered you hyperthyroid which can be life threatening if not treated with the AT medication.

In the first instance you must work at getting your antibodies down.

The AT medication should be at a high enough level to be blocking your own thyroid hormone production and relieving symptoms.

Until this is fixed I don't think you can possibly be ready for any other course of action.

Your thyroid is malfunctioning which in turn means you are emotionally , mentally, psychologically, physically and spiritually compromised - with your brain and body malfunctioning and lacking balance and synchronisation.

You can't do this yourself - one step at a time and I think this needs to be working with the endocrinologist in the first instance.

Take good care ;

P,S.

I think the Elaine Moore website went down about a week ago : seems ok now :

[pennyannie in reply to NIKEGIRL]

Hey there again :

I'm reading back up this post and rather read your back history, which I've tried it's easier to ask this simple question :

Did you ever get given a copy of the antibody blood test unique to Graves showing over range TSI or TR ab antibodies ? What were the numbers ?

It's evident you have Hashimoto's as detailed by the antibody test numbers and just keep reading you were confirmed as having Graves and planning on getting the numbers : sorry, maybe I've missed something.

[NIKEGIRL in reply to pennyannie]

.TPO was 472 range is <10TRAB was >100 rant of >0.8 is positive

[NIKEGIRL]

Hi. Firstly I got the T4 range wrong. T4 range is 10-24.

When I got a reading of 42 for my T4 I was taking 5mg of carbimazole a day. Even at that low dose I got side effects. I did a post on Elaine Moore site but nothing came back. My T4 has been over 100 and my T3 at 48 or thereabouts. I didn’t have the tremor at 42 so I suspect the T4 and T3 is higher than 42 as the tremor is back. I have been doing vitamin supplements for 4 months as I had been seeing a medical herbalist, so I wondered if that was why I was converting really well. I’m like you I don’t know enough. I feel stupid doing a blood test when I am no longer taking the carbimazole. Also I haven’t been asked to do another blood test yet. I don’t want to waste peoples time and have the GP calling and saying your blood is worse. I feel like I’m being an arsehole but I really have no trust. It’s all gone. That’s why I feel psychology will help as it will give me tools to challenge my thinking. When my T4 got to 26 and T3 to 12.8 I felt very depressed. This is the closest to normal I got. Thank you for your support. I do appreciate that 🎄

[Lora7again in reply to NIKEGIRL]

I have regular blood tests to check my levels and I am taking nothing at the moment. I go by how I feel and symptoms. At the moment my hair isn't falling out and my nails haven't lifted off the their nail beds which is usually a sign that my levels are rising. I still have Graves' rage and nearly lost it with an old man today who kept getting too close to me in Tescos! I would try again on Elaine's site because she does try to answer everyones questions.

[NIKEGIRL in reply to Lora7again]

You have it hard in the UK with COVID so I don’t blame u for losing it with people who get too close. I feel lonely but this site has been a saviour because I feel I can be honest here. I was sent to a psychiatrist who said I was dealing with trauma and I most likely have PTSD but it is borderline. This helps me understand my behaviour and that I am not just being difficult. Sleep well. Everything will work out.