No thyroid on T3.. Want to do a trial of coming off it for 2 weeks??

[birkie]

Hi everyone ❤️

I've just about had enough, yesterday and today I'm shaking so badly sweating bad, heart palpitations, weeing constantly, very thirsty, feeling so sick (no appetite) just feel so unwell, this can't be because of over medication of T3.. I'm only on 25mg I was on 35mg but told at A&E when my heartbeat went to 133 resting I was over medicated, I dropped 5 then 6 weeks later dropped 5mg again, my symptoms remained, shaking, sweating bad, palpitations, weeing loads, very thirsty, just feel so unwell sick to my stomach today 😢.. I'm thinking of coming off the T3 for 2 weeks to see if these symptoms remain 🤷‍♀️.. I've already had 2 days off them as I felt so nauseated I couldn't stomach them.. And I still have all the symptoms!..can some one tell me what symptoms I should be looking out for in not taking the T3... This is my last resort as I'm getting nowhere with any endo (both have discharge me from there clinics) and my gp is usless, ( in recent posts I've had blood tests which show hyperparathyroidism but the endos have egnored these bloods)

Thanks for any advice you can give me.. ❤️

[fuchsia-pink]

I was taken off lio - without my agreement - in early 2020 after I saw a private endo who doesn't "do" lio on the NHS and wanted to see how I did on an earlier levo-only dose (which was then reduced because it was slightly "over" but I had felt unwell on the reduction and this led to me being given lio, which I'd been really happy with).

I did a post about this at the time (after my kind GP re-instated the NHS endo's lio, for which I am still grateful on a daily basis) healthunlocked.com/thyroidu...

Basically in 2 weeks of no lio just levo: I had put on 2 kg (weight previously stable); brain fog; puffy face; hair lost lustre; feeling really sad at the thought I might not get my lio back!

BUT I hadn't had your problems when on lio so maybe your experience will be different

[birkie in reply to fuchsia-pink]

Hi fuchsia - pink❤️Thanks for the reply, I'm sure my feeling of being unwell as nothing to do with over medication as my T3 was 5.9..t4..2..TSH..0.05) I know my gp is not happy with my T4, TSH being low but this happens on T3 only.. I was doing great till last year in April when I started weeing loads very thirsty, bone pain palpitations ect had bloods done showed over range calcium 2 of them.. Gp sent them to endo who did 2 parathyroid hormone both were over range, this indicates primary hyperparathyroidism, but each endo has now dismissed me from there clinics saying my 24 hour urine calcium was normal so I don't have primary hyperparathyroidism eventho I have all the symptoms, that's why I want 2 weeks off the T3 because they keep saying it's over medication 🤦‍♀️it's not... 😢😢

[Queenfoodie in reply to birkie]

Hi Birkie, when I was previously taking Calcium supplements, I had all sorts of problems like heart palpitations, and feeling unwell, insomnia etc. The minute I stopped calcium, I felt fine again. I have been taking 50mcg T3 everyday in a single dose for the past 5 years. It's been a life saver for me. I wonder if calcium is the culprit in your case?

[birkie in reply to Queenfoodie]

Hi Queen foodie❤️Thanks for the reply 👍 last year April I started to feel very unwell😢 after getting on great with my T3 dose at 30mg I increased it to 35mg felt OK.... Then just started weeing loads more and had a raging thirst, still have 🙄.. On my thyroid blood results I noticed a high calcium think it was 2.67...range 2.10..2.60...i looked bk on previous blood results (I get printouts👍) I noticed another over range 2.61....my normal calcium base line is around 2.35..i spoke to my gp about them as he never called me in on them being out of range, he said "ho they are only mildly elevated" I recognised the symptoms of weeing more and thirst as I was diagnosed in 2004 with early onset of primary hyperparathyroidism 🤷‍♀️ but nothing was done.. I informed my new gp.. (I'd moved surgerys) I told him about the 2004 diagnosis of early onset of primary hyperparathyroidism and could it be this that was causing the symptoms, he eventually sent my calciums to an endo who did 2 parathyroid hormone tests one in June 2020 which was raised at 8.1..then again in Aug 2020 again it was raised at 9.5..the endo wrote saying I PROBABLY had primary hyperparathyroidism, but has now dismissed it,, 😠 my last calcium levels were March 2021..(2.68) ...ranges.. 2.10.. 2.60) went bk to 2.35.. in April 2021...now its 2.53..in June 2021...my PTH as gone from 4.4 in march 2021 to 5.9..in June 2021..so I fear you may be right, this is the fight I'm having with the endos who have both dismissed me from there clinics... 🤷‍♀️

[Timbutdim in reply to birkie]

Are you constipated as that can indicated calcium being lost

[birkie in reply to Timbutdim]

Hi Timbutdim ❤️Yes I'm constipated, constipation is a symptom of hyperparathyroidism, but recently I took some pain meds a gp prescribed me for kidney pain (passed a stone recently at home) and they contained lactose so I had a bout of bad bowel pain with very loose bowels, well at least I got moved🤷‍♀️

[Timbutdim in reply to birkie]

Can you afford to travel to see a specialist?? No any charities or fund raisers so you can get another diagnosis??

[birkie in reply to Timbutdim]

Hi timbutdim😂I've put that laughing emoji next to Yr reply name just wondering if its the Harry Enfield character 😂... I loved watching Harry Enfield and chums,

Actually I received a letter from the endo who as discharge me from her clinic... She wrote, that she recommends I see another endo as she can not help me, I contacted my referral manager to day to get it in motion, I said I want to choose the endo, 👍

[Timbutdim in reply to birkie]

Do you have an endo in mind hopefully so And yes good old Harry lol

[NIKEGIRL]

Hi. What happens if you go to A&E? What does your GP think? Will the GP run the tests again and do a referral? This is awful for u. Clearly unwell but no one is stepping forward. If it were me at A&E I wouldn’t leave without a diagnosis. It’s just so wrong. I’m sorry u r having to deal with this BS.

[birkie in reply to NIKEGIRL]

Hi NIKEGIRL❤️went to A&E recently with a resting heart rate of 133, doc said its over medication of T3... I was on 35mg i lower by 5mg to now.. I'm on 25mg still have all the symptoms, so I just thought if it was over medication wouldn't the symptoms, (tremor, sweating, jitters have diminished by now.. They have not.. In bed now and have been all week if I get up my legs are like jelly, I'm shaking( visably) yes I did do this when I was diagnosed with hyperthyroidism (graves) but my T3 is in range now so it can't be over medication of T3 meds.. 🤷‍♀️ To be quite honest my gp couldn't care less... It took him a year to Diagnose me with hyperthyroidism, thanks to him I lost my thyroid 😠

[NIKEGIRL in reply to birkie]

This is just my opinion. Go back to A&E. If u r in range then there is no reason now to blame over medication. I have Graves and lost my tremor when my T3 was at 20 range 2.0-6.0. I still had other symptoms. Clearly u r unwell. I have had to go to A&E for my son and I have had to go onto bitch mode to get the answers. I’m not proud of that but it achieved the goal of a diagnosis and ultimately that is what u need. A diagnosis and then a plan. I feel u know the diagnosis but now a plan is required. I would not leave without answers. Alternative is get another dr. Seriously I mean move drs because your current dr is not serving your needs. I’m sorry u r going through this and when u r unwell like u r everything is 1000 times harder than it should be. These r the only two things I can suggest. Sorry I can’t be more helpful Birkie. PS. It’s not normal to lie in bed for a week. You know this.

[birkie in reply to NIKEGIRL]

Hi NIKEGIRL❤️

Thank you, ❤️ yes I know being bedridden is a sign I'm not well I did this for nearly a year lost over 2 stone in weight and my gp said its the menupause 😠.. Your right in what you say about moving doctors, and that is something I'm giving serious thought to, I contacted PALs today venting my concern on over range calcium and pth.. And the fact the endocrinologists have discharged me from there clinics.. They are getting bk to me, but I'm wanting me gp to own up to my miss diagnosis of hyperthyroidism (graves) i went in to thyroid storm, in hospital for 12 days in and out of consciousness and to top it all in my records in 2012 I find some endo who my gp sent bloods to diagnosed me with thyroiditis (swelling of the thyroid) I had no idea I had that diagnosis also had 2 short suppressed TSH .... What the hell is short suppressed TSH... So I really want him to be held accountable, but at the mo I'm to ill to do anything 😢

But thank you so much for replying to me... I'm in a very dark place at the moment and talking about it helps me heaps ❤️❤️❤️🤦‍♀️

[NIKEGIRL in reply to birkie]

Hi. I can tell u r in a dark place. No dr is going to apologise. I’m sorry to tell u this. Even though they are wrong you will not receive any apology. An apology is an admission of failure on their part and it is not something u will hear them say. PALS is a good option. Presenting at A&E is still an option as well. Do this during the day in the working week when an endocrinologist is on call for the ED staff to call them. No woman going through menopause lies in bed for 2 years. No woman. You must seriously consider moving dr. You are paying with your physical and mental health. I changed drs a year ago. Best thing I did. My new dr and I haven’t always seen eye to eye but he has told me numerous times he is worried about me and goes home worrying about me. It made me really think. He actually cares about me. We have had our ups and downs but ultimately I like him. A good dr will work with you. Listen to you. Knows the real you. I want you to be open to what I am about to say. I think u have had significant trauma. An extended period of time leading up to a diagnosis of Graves followed by thyroid storm which threatened your life and now another significant event whereby u cannot receive the treatment you need. I just want u to consider and ask yourself if u think u have endured trauma. If u think yes, yes I have. Then I would like you to consider getting help for that. I see a lot of myself in what you write. That is why I am writing to you. I empathise with your position and can relate with you. I write to you without prejudice or malice. My experience has been getting a new dr and going to a psychologist who specialised in the diagnosis of chronic illness as well as specialises in trauma. Both these actions have gone a long way to getting better. Something has to change for u as well. Sadly u r the one who will need to effect that change because no help is coming. I say that with such sadness. If u were my mum, aunt, cousin or friend I would have your arse at A&E and speaking to drs saying how unwell u rand what is going on. I would use some more serious words though. Not swear words but serious diagnosis words. Kindest regards always NIKEGIRL 🥰

[birkie in reply to NIKEGIRL]

Hi NIKEGIRL❤️❤️

omg I'm so sorry for going on like I have with my posts, never asking you personally how you are.. How are you coping now? Have you got the treatment you needed.. Yes I would say I have suffered trauma 😢.. First with my thyroid that was hell.. Now with this parathyroid thing.. I was wrong in believing my surgery would never make a miss diagnosis again after the miss diagnosis of graves.... How wrong I am... 😠.. Did you have Yr thyroid removed?... Best wishes and hugs nikegirl.. 💖... I'm waiting on pals to contact me.. But to be honest if I feel the same tomorrow as I have this last few weeks I will need to go to A&E... Thank you for all your support 🙏🙏🙏🙏

[NIKEGIRL in reply to birkie]

Please don’t apologise. You have nothing to be sorry for. This is about u. If I can give u some support then that’s my pleasure.

[birkie in reply to NIKEGIRL]

Hi NIKEGIRL❤️thank you, that is so lovely of you... 💓💓💓

[NIKEGIRL in reply to birkie]

When I went through my own trauma I use to tell myself “if u do nothing, u will get nothing”. Only I could affect change and that’s what I did. I became to sweetly wheel and wouldn’t go away. Always presenting at A&E. I got what we needed. A diagnosis. It cost me my personal health but I would do it again to get answers

[birkie in reply to NIKEGIRL]

Hi NIKEGIRL ❤️

I'm glad you stood up to them👍 I did the same to my surgeon last week but he just brushed me aside saying he would not perform any neck surgery on me again, I said well your not the only surgeon out there, I asked if he would do the same if I had cancer of the parathyroid glands, would he leave me to die from it..... Instead of trying to save my life? Honest these nhs consultants ect have tough hides... He as much as said I was wasting his time, obviously he never looked at me with any intent of helping me, I look awful I've lost most of the front of my hair I wear a baseball cap anytime I need to go out, I'm pale no colour I'm in pain 24/7 what more do they want...... Ho I know for me to be rushed to hospital again then its action stations..... It shouldn't be that way.. I've gleaned a lot from what you have said to me today💓 and as I'm feeling right now I must muster the energy to carry on.. Its tough coz all I want to do is lay down with my painkillers and take the lot.... Be done with all this crap.... Then I see my gps face and just want to slap it... Brings me bk round again, many thanks NIKEGIRL ❤️❤️❤️❤️

[NIKEGIRL in reply to birkie]

If u lie in bed and take the drugs u will ultimately face defeat. Like I said if I knew u personally I would drive your arse to A&E and not leave until we had answers. Now I’m a tough and stubborn person. I do not give up not ever, hence why I have Graves. I would have said to the surgeon that he was wasting your time and u r right he is not the only surgeon, there are others out there. U do have options but currently u have little options. There has to be a change somewhere. U have to affect that change. Do u have the option of another drs clinic in another part of town? Can u go as a casual patient to another drs clinic? I don’t know so that’s why I am asking? When we changed drs we essentially interviewed our new dr. I said “im the Mum, I have trauma and now Graves” my son said “im the patient and I hate all drs” my husband said “if I see u I usually need surgery”. We talked about what we needed from him. We wanted someone who would listen to us. Give us eye contact and genuinely be interested. After our talk the dr sent my son and husband out of the room and said “I want to speak with u alone NIKEGIRL”. The dr said to me “do u know how sick U are?”. Now having just had 6 years of trauma and 4 months of a Graves diagnosis and having never met this guy before, I said “yes I know I am sick but I actually don’t give a shit”. That was my answer. “I hate drs as much as my son” I said. The dr put me through my paces with a physical and said “you need to take the carbimazole”. For me I walked out after the consult. I was like WTF. But now looking back. He is the first person medically who took the time to connect with me. Plenty of drs had told me I was very sick but he actually might never have seen me ever again as we hadn’t decided on him as our dr but it is only a year later that I can now appreciate that he cared. I have lied to my dr. I cried to my dr. I have booked to see my dr and then cancelled last minute, I have laughed with my dr. I really like him. Unfortunately he is going away for 6 months aaarrrgh. He says he will be back. Hooray but if he doesn’t come back I feel like I could cope and that he showed me there are good drs out there because I had lost that. I had formed the opinion all drs are wankers. Some are. There might be some people who read this post and poo poo it. Look for a dr that will advocate for you. If it’s not the first one then go to another. You have nothing to lose because right now your current dr is not helping u to get better. “If u do nothing, you will get nothing”. If u cannot do this alone then enlist your closest personal friends and get them to do the leg work for u to find out what other drs are around taking patients that way u can call and arrange appts. I would still present at A&E. This happened to me. My son in 2015 got a football boot aged 16 (he’s a goalie) into his hip area. Genuine tackle. Genuine injury. Was told it would take 12 months for an avulsion fracture (small chip off the pelvic rim” to heal. He was never ok since that day. In 2016 he had a huge mid air collision in goal and tore his labrum in his hip (the seal that holds the ball and socket). We have acc in New Zealand and they cover injuries. He was declined at 16 cover. ACC said he had a degenerative hip at 16, WTF. So now it went to the public health system, your NHS equivalent. They rang me and said there is no money in the budget for your son to get surgery. I said he is a minor. I also rang my member of parliament to advise them. And so the trauma started for him and me. But I tell u this. They picked the wrong mother to mess with. I got my son surgery but it cost me personally, my health. And after the surgery he was still not ok. Back and forth to A&E we went for 3 years. It took until 2020, 2020!!, 5 years to get the diagnosis of nerve damage from the 2015 injury. But I got the answer and I then chased acc and made them pay for his treatment. The only thing I could do was advocate for my son. And I refused to give up. When u read this do not apologise in anyway. I have written this to inspire you to get friends and family on board to help you. Sadly for me I did this alone and it cost me. Don’t let this be you. You can do this because if u don’t who will?

[birkie in reply to NIKEGIRL]

Hi NIKEGIRL❤️well I had the worst night in a long time last night, I got up in the early hours 5. 25.. Took myself off to A&E.. Its a mixed bag I'm afraid, firstly u know what symptoms I am having.. I presented in A&E today shaking like I was attached to one of those muscle machines, sweating, bad headache, feeling very sick.. They took bloods but he said they were all OK.. I asked about my calcium, he said its fine I said what is it.. It was 2.59...range here in the UK is.. 2.10.2.60....but in hyperparathiyroidism you can have a normal calcium or just above and its normocalcemic hyperparathiyroidism,) they never did parathyroid hormones as they said my calcium was normal.... I said normal for who!!! .. My normal base line for calcium is round 2.35...for it to go from 2.35...to 2.59 today is a big jump.. And obviously my body can not cope with that amount of calcium running around my blood.. He then went off to look bk at blood work I'd had done in the last few months and came bk with the same thing the other doctor did last time in A&E.. I'm thyroid toxic medicated🤷‍♀️.. My T3 does not show that I said, it was( 5.9..) Ranges.. 3.10...6.80..on the 15 of June hardly over medicated.. And certainly not toxic.. 🤷‍♀️.. As I'm on T3 therapy the T4 and TSH will be low.. He agreed but has sent my blood for another round of thyroid tests.. What I failed to tell him was... I'd taken my thyroid meds 10mg before I went over to A&E because I didn't know how long I'd be in there.. So maby that test will be scuppered 🙄 I also inform him I really need to be seen by a specialist ASAP.. He did say yes I think you do but let's get the thyroid blood tests bk first... Good god I hate the nhs... You sound like you've been through the mill Nikegirl.. 😢 I also have a son but he lives away now with his girlfriend I don't get to see him much😢.. But hey I think we're both fighters.. You gave me the courage again to get bk to A&E and I'm so grateful for that.. Take care of yourself and your family ❤️❤️

[NIKEGIRL in reply to birkie]

R u still at the hospital?

[NIKEGIRL in reply to birkie]

I think u did a good job standing your ground. I always think u can be at either end of the ranges and present with symptoms of over and under. Depends how sensitive your body is. I struggle to understand if your calcium said 2.59 and top end is 2.60 and the person is clearly showing signs of too much calcium how u could not investigate that further. This is what I have always struggled with. In 2014 my TSH was 4.0, opposite of now, weird, but 4.0 nonetheless. Range 0.5-4.0. I was told I was fine. Same as you today. I felt anything but fine. I was cold, depressed and suicidal ideation, I couldn’t lose weight even though training with a professional trainer. Clearly something was off but no it’s not your thyroid. Diagnosed with chronic fatigue. An illness that drs don’t even recognise. I have to agree the T3 test might be scuppered. Depending on the blood result will denote whether I tell the dr u had just taken your drugs. The only glimmer of hope I see is that he agrees u need to be seen. So I am hoping u r still in that hospital awaiting results and further action and not at home. If u r at home and feel unwell again then sadly back u go. You have to be the squeaky wheel. How do u feel?

[birkie in reply to NIKEGIRL]

Hi NIKEGIRL ❤️the A&E doctor sent me home saying he saw no reason I should stay in hospital, he also said I would get the results of the bloods later on today... Still waiting 🤷‍♀️.. I know its not T3 thyroid toxic meds my T3 shows that,, it was done recently and was in range, unfortunately the man didn't know anything about hyperparathyroidism, and flat out refused to listen to me, on a better note I had recived a letter from the endocrinologist who discharged me from her clinic unfortunately I'd not noticed a second sheet attached, on the attachment she wrote I recommend your refer this lady to another endocrinologist within the country, I rang my surgery up to ask if my gp had read the letter and responded to the request,, of course he as not, so the referral manager said I have some endocrinologist in these hospital's you can choose who you would like to see, so I'm waiting for her to get bk to me on that, I got diagnosed with cfs/fibro and ME, seems when they can't workout what's wrong with you they stick that lable on you😠 I'm getting so worried now as my body will not stop shaking my headache won't go away taken paracetamol in bed trying to sleep just can't, I'm to jittery, 😢.. I'll just have to hold on till tomorrow see what happens 🙏🙏

[NIKEGIRL in reply to birkie]

If your symptoms get really bad you will need to go back to A&E. There is hope with a choice of another Endo. I would ask HU for a list of the friendly Endos used by the site that correlate to your area and hopefully there is one for your area. Birkie. Clearly u r sick. I don’t know what else to say or recommend.

[Timbutdim in reply to birkie]

Hi sounds like you have some emotional pain too as it seems like no one cares nhs staff are bound by what they are allowed to do so try not to blame them And please don't think about taking too many pills as you are not thinking clearly when you are in pain Has anyone suggested diet or lifestyle changes sorry if you have mention your diet and lifestyle in previous posts I'm new here so do not know you so pls don't take offence My daughter is going through just what you describe but can not seem to reduce stress levels or stop smoking I fear she can not understand the seriousness of high stress lifestyles My daughter takes propranolo for the body shakes and palps and that seems to work Do you take beta blockers??

[Timbutdim in reply to birkie]

What's your caffeine and nicotine consumption as both can cause palps

[birkie in reply to Timbutdim]

Hi timbutdim❤️

I've not drank coffee for over 5 years, never smoked, I'm also lactose intolorent have colitis, I know what the fast heartbeat is just like I did when it went nuts when I had graves (overactive thyroid) that was to much Thyroxine, this is to much calcium it does much the same thing in that the parathyroid glands or gland goes overactive signalling the parathyroid to dump calcium into the blood stream from the bones the calcium can give you palpitations fast heartbeat, 🤷‍♀️

[Timbutdim in reply to birkie]

Ok the only other thing I can think of is that the tablet is not the strength you think it is and they be made a mix up somewhere I'm hypo so look out for feeling cold and unable to lift head from bed pillow etc, constipation can take a while I've took pills back to pharmacy before as effects can alter dependant of batch number have you yellow carded batch??

[birkie in reply to Timbutdim]

Hi

No yellow card, I've asked several times for one due to me being lactose intolorent, but no luck.. My pharmacy are awear I'm lactose intolorent and only teva brand do lactose free... But I have seen posts on here about some not getting along with teva brand, obviously I'm going bk to see a endo so along with the hyperparathyroidism symptoms I will be touching on my thyroid meds too,... 👍👍

[Timbutdim in reply to birkie]

I thought I was intolerant to certain fillers in the various brands but think now it's a conversion issue for me

[birkie in reply to Timbutdim]

HiI had a conversion issue with T4 levothyroxin endo said I wasn't converting that's why she put me on T3 only therapy 🤷‍♀️

[Timbutdim in reply to birkie]

My endo asked me to do dio2 as gp surgery wouldn't take on prescriptions for T3 after trail period

[Timbutdim in reply to birkie]

What's your blood glucose level?

[birkie in reply to Timbutdim]

Hi timbutdimSaid glucose was OK... Not diabetic, of course I knew that, they have pleced that lable on me several times always comes bk normal, 🤷‍♀️

[Timbutdim in reply to birkie]

Did you get print out I ask about a previous test result was told same thing normal I then asked what was my TSH 24 she replied lol I guess 24 was normal under the circumstances Ask them no questions theory will tell you no lies xx

[birkie in reply to Timbutdim]

HiI always get printouts..... Like today in A&E doctor said gleefully Yr calcium is normal... I said I be the judge of that... What was it.... 2.59...one point off the NHS golden range... I said so what Yr saying is.... Because I'm not over the 2.60 I'm fine???? Clearly I'm not... 🙄🙄🙄🙄

[Timbutdim in reply to birkie]

Yes my calcium just under too , worse thing went on other medication which interacted with thyroid meds , my go did warn me but indulged me just the same and six months on ouch my joints were back to square one hands worse than ever and my hair half gone, lol Sometimes I'm my worse enemy

[TSH110]

It’s sounds like hyperparathyroidism symptoms they really need to address it, it sounds pretty serious:

nhs.uk/conditions/hyperpara...

Can you get to see a medic from the thyroid U.K. list who should know what they are doing? Email admin for a copy. These idiots you have seen could be the death of you. They cut my sisters out during a total thyroidectomy but she was not given calcium to replace what they make, it made her very poorly but eventually someone worked out what the problem was 🙄 it’s frightening that we have to trust our health to these numbskulls

[birkie in reply to TSH110]

Hi TSH110❤️I'm on the parathyroid website hyperparathyroiduk.. 4 change... I have posted all my bloods ect and 2 parathyroid surgeons got bk to me saying I need to see a surgeon in my area... These surgeons were in Oxford to far for me to travel I'm in Cumbria, plus they do a lot of private parathyroidectemys, it's around £5, 550 private.. But they did say my blood work says primary hyperparathyroidism, my thyroid surgeon as refused to do any further neck operation on me as the endo wrote saying "further operation on the neck will not be easy as thyroidectomy as already been performed, thus any surgery would be not recommended due to the risks, to the larynx nerve..., my 24 hour urine test came bk normal so that's why I've been discharge by the endos... They are not looking at the pth/ calcium because they say they are only mildly elevated, 3 calciums..... 2.68...2.35...2.53...i know something is going on with the parathyroid glands, 🤷‍♀️ my gp is siding with the endocrinologists and surgeon too.. 😠

[TSH110 in reply to birkie]

Dear god, you should beg/stealborrow that money and get it done. It’s not a great journey pity your don’t have any friends in Oxford

[jrbarnes]

I had a partial on my thyroid. Trying to go T3 only did a number on my blood sugars. I had that extreme thirst that I couldn't get rid of. I need extra T3 but the Levo does a better job at controlling my blood sugar and heart rate.

[Hidden]

Since you have no thyroid, and have been on T3 only, you have no storage hormone (T4). If you stop T3, you might feel better for a couple of days (if T3 is not right for you, or you have been on the wrong dose), but then you will feel worse. You cannot live without thyroid hormone. If you are on levothyroxine, it will take 6-8 weeks before it´s all out of your system, but T3 will be gone in a few days.

[birkie in reply to Hidden]

Hi purpleCat❤️

My T3 level is in range at 5.9....ive been taking T3 lactose free for about 11 months now and getting on with it well.. Got back to a good sleep pattern, was getting out more seemed I'd cracked it,.. It was only last year in around march /April I noticed I was drinking way more than normal and going on the loo a lot more especially through night, my body pain went up several notches,.. Heart rate went up, sweating, tremor,.. Noticed 2 over range calciums in my thyroid blood work ups, pointed them to my gp.. He sent them to endo I was given 2 parathyroid hormone blood tests.. June 2020..over range pth at 8.1 with a over range calcium of 2.61....aug 2020 pth 9.5 with a calcium of 2.53....my calcium is bouncing around today at A&E its 2.59....the diagnosis of hyperparathyroidism is a normal calcium or just over range, and over range parathyroid hormone, either being primary or normocalcemic primary, both my bloods last year (above readings) confirmed this the endos even wrote to me saying it was probably primary hyperparathyroidism, now they have changed there minds and have discharge me from the clinics.. 🤷‍♀️

[dtate2016]

Look into / consider iodine over load. Do you use iodized salt? Lots of new info and research coming out that some of us have thyroid problems due to iodine - even hidden sources of iodine, that we may be ingesting unknowingly. Here in the US, for example, they use iodine as a dough conditioner for commercial bread and they don’t have to listed on the ingredients.

See Dr. Christianson and iodine balancing online.

[birkie in reply to dtate2016]

Hi dtate2016❤️

That's interesting about iodide, as far as I know I'm not ingesting a lot of iodine, I don't eat bread, when I use salt, very rare, I use sea salt, but when I was due to have my thyroidectomy my surgeon prescribed luggis iodine 3 times a day till my op think I took it for about 2 weeks, it was awful 🤮.. By the time my op was due I'd lost my voice, I believe the iodine killed my thyroid as it was to toxic to operate on.. ❤️

[dtate2016 in reply to birkie]

I don’t know if it killed it but it might’ve made it sick. I ate iodized salt for over 30 years and then took all kinds of thyroid medicine for 30 more years. Believe it or not I still have at least some of the thyroid. It’s functioning right now without medicine. (Very little medicine and I mean minuscule). I’m assuming your thyroid was not removed?

So the overdosing of iodine may not be an option for you it sounds like you don’t get a lot of hidden iodine. So I was mentioning it as a place to explore. Sounds like reducing iodine may not help - then again I will keep it in mind. Eating a lot of seafood, dairy, egg yolks, etc. all of these are sources of increased iodine.

[birkie in reply to dtate2016]

Hi dtate2016❤️My thyroid was removed whole thyroidectomy, it was so toxic the surgeon said he would not cut into it as it is now (this was 2019)as he could kill me, my uptake scan showed massive uptake in both lobes... And my thyroid antibodies fore off the scale very high.. (graves) i had no choice in keeping the thyroid it was slowly killing me, was in hospital for 12 days in thyroid storm.. 😢

[NIKEGIRL in reply to birkie]

Birkie. I’m dropping u a line to see how u r feeling today?

[birkie in reply to NIKEGIRL]

Hi NIKEGIRL💗

thank you for reaching out to me.

🤗.. I'm still bedridden, best I can do is going to the toilet and keeping my fluids up.. Not eating much really don't have a appetite, but that is indicative of hyperparathiyroidism 🙄... I noted to the A&E doctor that my calcium had gone from these ranges since march

1st march, 2.68) ..29th march 2.35(back to my normal level) June.. 2.53 going up again.. a&e on Monday 2.59 very top end... ranges for calcium in the UK is 2.10....2.60..i said this is why I'm presenting with these symptoms today... Its my calcium going up... My parathyroid hormones have gone up again to...2020..june 8.1..aug 2020..9.5)..march.. Both over range.. 2021..4.4..june (in range) 2021..5.3 going bk up again... ranges.. 1.60..6.90...) but all he focused on was my thyroid T3 meds... As I said he sent my blood to the city hospital to have a full thyroid pannle, he said he would contact me later that day with the results.. Its Thursday today and no contact.. So I assume correctly that as I told him MY T3 IS IN RANGE😠😠.. I'm still waiting on a phone call from my surgery's practice manager on the endo appointment, I have No faith she will call me bk I know I will need to do it myself, I can't believe how these medical professionals are using covid as a cover not to work... As I've rang the surgery to speak to the practice manager to be told they start at 12oclock...and finish anyway between 2 o'clock or 2.30...my god that's a long days work🙄.. I know there hours before covid the hours were 9am to 5.30....make my blood boil... 😠😠😠😠

[NIKEGIRL in reply to birkie]

Hi. I’m sorry u r unwell. Keep ringing that dr surgery. Squeaky wheel. It is very poor and that’s me being polite when the practice is open 12-2.30. I’m at a loss for words I really am