[Kimberly]

#1169936

Hi Rebecca – I’m sorry you are continuing to experience all of these frustrations! It sounds like you have a lot of confidence in the surgeon you consulted with, so hopefully, that individual will be able to help you get back on track. In the meantime, I absolutely agree that your GP should at least be an *advocate* in making sure that you get proper care. Keep us posted!

[RebeccaJT]

#1169937

Hiya Kimberley

Hope you are well. Yes I do have confidence in him. Bless him, he sent me a text message yesterday to say he’d got my message, not to worry he’d provide me all the tests and prescriptions I needed when he saw me next Tuesday, but he couldn’t sort the problem (by which I assume he means the deadlock with my endo that leaves me incorrectly treated) until that time – I guess when I see him next week I will by that time officially be his patient and he won’t be trampling on anyone else’s patch.

I am relieved!! However a week does feel a very long way away, I feel very unwell indeed. I have also been struggling with very powerful feelings of rage, and I’m finding it hard to even be polite. I feel very frazzled and ‘thyroidy’ even though my levels are pretty much hypo – prone to flying off the handle (not me at all, I’m a pretty cheerful person). I know this is the inflammation that my surgeon spoke of too, and my neck does feel sore and swollen, so I’m trying really hard to remain rational and not give into wonky thinking.

Also I think that my recent consultation with him brought home just how very poorly I am, just how much I’ve been coping, coping, coping, coping and just how much I have been fobbed off in the past by doctors who didn’t know what they were doing, suffering needlessly. I am angry about that and I’m trying to be a grown up and not chuck it around inappropriately but my fuse is very short.

I’m hoping the surgeon takes pity on me and squeezes me in asap.

Anyway, thanks again for listening to me. I was at one of my 12 step groups tonight and sat next to someone in the latter stages of chemo for Leukaemia (just heard they’ve got remission) and felt awestruck that they said they felt grateful they’d got the ‘right kind’ of leukaemia as it’s treatable. The chemo guy and I were next to each other when we held hands for the prayer at the end and he said "Right sweetheart, I’ll stop your hands shaking if you stop mine’ and so we stood there, two sick drunks, sober today and shaking like leaves and I thought, well it could be worse … we could be dead and we’re not, we’re still here!!!

So when I am well I am going to do my best to help someone else! There definitely needs to be more information and support here in the UK. I’m just not going to wage my one woman crusade just yet, I’m going to get my throat cut first!!! ” title=”Wink” />

Best wishes

A very frazzled,

Rebecca
x

[Kimberly]

#1169938

Wow, Rebecca, what an amazing story from your 12 step group. Thanks so much for sharing your experience!

You will be a wonderful advocate one day for Graves’ and thyroid patients. But as you have said, you definitely need to take care of yourself first! The Foundation often receives phone calls and e-mails from newly diagnosed patients who are looking to become advocates or start support groups. We let them know that we would *love* to have them participate when they are ready…but their immediate priorities are to select a treatment option, get their levels stabilized, and get their lives and their daily routines back to normal (or at least a "new normal").

Wishing you success on this next phase of your journey!

[RebeccaJT]

#1169939

Hi Folks

Well here’s the latest phase of my countdown to surgery. I saw my surgeon again last Tuesday at the main hospital in London. He was wonderful! I was in there for an hour and a half much to the annoyance of the ward sister!

Basically, to cut an incredibly long story short my Surgeon has taken over my entire care, and we’ve ditched my endo. My surgeon can’t believe that I’ve been taking ATDs for nearly two years and reporting such distressing symptoms!!! I showed him a list of twenty blood results going back over about 18 months and he said ‘it’s obvious’ … and here is what is obvious:

I have Hashimotos disease, Graves, TED, and Hashitoxicosis. He said that means that I have spikes of T3 and then drop back into hypo (this so matches my life experience over the years) – this can be "up" phases of hours, days, weeks, or months. He says my results on ATDs show a rapid and consistent fall in T4 into hypo ranges, an almost continually suppressed TSH (until very very recently) and a fluctuating T3 level. He also said my continual complaints about feeling upset, unstable, ‘mad’ etc are explained by the four hourly spikes of T3 that I’m now experiencing. This really does explain my bewildering array of physical, emotional and mental symptoms.

I have significant thyroiditis and nodules we think. I’m off for an MRI scan later this week, an iodine uptake scan and ultrasound scan next week. We are certain they will show a thyroid destroyed beyond repair – you can see my swollen thyroid through my skin!

I have finally had a very thorough battery of blood tests, including receptor antibodies, TPO antibodies, double stranded DNA antibodies, calcitonin, parathyroid hormones, T cells, etc. I also have a 24hr urine adrenal test. He wants to rule out any tumours, or other adrenal problem. He’s also testing for coeliacs disease. He thinks I have a knock on gut issue – an allergy, intolerance or autoimmune gut disease.

He explained that they’ve mapped the genome for thyroid and for gut autoimmune disorders. He said the ‘weak spots’ are the same. This means autoimmune thyroid patients often have a parallel gut problem causing issues of absorbency and vice versa. This then explains why some people have iron and vitamin issues, and struggle with replacement as the gut isn’t absorbing properly. Thus he’s allayed my fears that I won’t suit replacement.

He’s also put me on a very strict elimination diet. I’m allowed to eat potatoes, avocados, a little oil (but no frying), and a little salt. I can drink water. I can now add in a little white fish. I have to do this for ten days (I’m on day six, I’ve been in bed for most of them as I feel so awful. This is a good sign that my body is clearing out an allergen and inflammation is receding). I then have to add one food item in per day to try and track the culprit. I’m fairly sure it’s wheat but not gluten. So’s he.

I’ve come off my very low dose ATDs and then once I’ve finished the diet I go back on CBZ. After the scans, I start adding in a little thyroxine, he’s told me to play around with it, starting at 30mcg for a few days, building up to no more than 100. I’m on his urgent list for surgery and will have a total thyroidectomy at the end of January.

He’s also really heard me re work, money and career and has said I’m going to be feeling poorly for another six months realistically and to take as much pressure off myself as I can. So whilst it is not ideal in lots of ways I’m going to move home to my parents for six months and take all financial pressure off. I will give notice on my rented house this week, and put my stuff in storage and just come home for a while. I work freelance so can work from here when I can.

Sorry such a long post but those of you following my story will know just what a battle it has been to be taken seriously, and to get the right treatment. I’m very angry about lost time. He’s really heard me about my age and wanting kids, and realises this is very precious time for me. Honestly, I just want to hug him at the end of each consultation!!

He’s also said that he knows its controversial but he thinks most of my eye issues will reverse post surgery. He said he’s seen it a lot. I’m being seen at the eye hospital in early Jan but he’s told me not to have any eye procedures until at least a year after surgery. So phew! There we are. I really like my doctor, he’s incredibly humble – I can’t explain it, but I just know it’s OK to trust him and he knows what he’s doing. So we are now on the road to healing.

Thanks for reading.

Rebecca
x

[Kimberly]

#1169940

Hi Rebecca – Thanks so much for the update! It sounds like you are making the right choice moving back in with your parents so you can spend the next few months focusing solely on the healing process, without the extra stress of financial pressures.

We had a presentation at our Boston conference from a gentleman named Dr. Herbert Benson of the Benson-Henry Mind Body Institue. I just read his book "Relaxation Revolution", which notes that the patient’s confidence in his/her provider has a definite impact on the outcome of treatment. It sounds like you have finally assembled a team that you have great confidence in. Wishing you all the best!

[RebeccaJT]

#1169941

Hi Folks

I just thought I’d post the latest instalment of my pre-surgery story. I have a date!! A cancellation has come up and he can fit me in next Wednesday 21st of December. One night stay, and he said I should already be feeling much perkier by Christmas eve. I’ve said yes which means a bit of a mad scramble to get ready and make plans for afterwards but I’m taking the slot. So I shall be the owner of this renegade thyroid for just five more days and then the pesky little critter will be GONE!

I’ve cheered up about having to take thyroxine too as I’m now on block and replace, on quite a nice dose of replacement to get my levels out of my boots – 125mcg and I have to say I feel so, so, so much better and now the awful symptoms of my exclusion diet have died down I’m looking better too. I’ve already lost a stone and my mum burst into tears and said, ‘you are slowly coming back to us’. Given this is pre-op you can see why I’m hopeful!!! I do feel like I’ve had a few glimpses of the ‘real me’ again over the last week, it’s exciting. My diet is still incredibly boring as I can only add in one item per day, and I’ve been told to play it safe, but it’s worth it to feel better. No bloating or pain or wind either, and I was constantly plagued by gut discomfort.

I’ve now had all my tests, the ultrasound technician said that what she was looking at was most certainly not normal and I’ve had my uptake scan. I’m still waiting for my adrenal results but all my other tests are back. I don’t have Lupus, or coeliacs disease, and they’ve ruled out cancer. I do have very low calcium, vit D, ferritin and low parathyroid hormones (low normal) which he’s flagged as a suspected malabsorbency syndrome and possible autoimmune hypoparathyroidism (which I know nothing about and haven’t yet looked up, got enough to worry about!). My T Helper cells are elevated indicating moderate immune upset and my TPO antibodies are through the roof at nearly 900 (normal >60). Graves is confirmed with elevated TRab. Given my first doctor also tested my TPO it’s hard to see how the Hashi diagnosis was first missed. Even after I kept asking about it as I identified so strongly with the disease description.

I’ve also been copied in on all the correspondence so did feel rather vindicated when I realised his extremely long letter to my GP detailing just how very unwell I am, how serious it is, and just what a big disease burden I am carrying had also been sent to my old endo. And yet it was all done in the most respectful and knowledgeable way. I love my new doctor, he is a kind, humble and good man but he is on the patient’s side. I feel very lucky.

So there we are. I’m all set. Early Christmas presents of new wash bags and pyjamas are arriving! Oddly, after nearly two years of almost obsessive worry, I don’t actually feel scared. I just have this feeling it’s all going to be OK. I may be cursing myself for a naive fool in a few weeks, but somehow I don’ t think so.

So I shall post again when I’m up and about and well enough to write.

I really hope my ramblings help someone else at some point.

Happy Christmas one and all,

Rebecca
x

[snelsen]

#1169942

Rebecca, what GOOD NEWS! I am so happy for you! Your posts will be very very helpful to others on the site. And you can see that the title of your post is drawing many readers! In the thousands, already (as I recall.)
I am happy for your mother, too! There are many good posts about the surgery for you to read. My experience was that I was sore and tender for a few days, did not take pain meds cause I did not need them. I was more tired than I expected to be. I went back to work full time at 2 weeks. I wish I had taken a few more days, then worked part days for a few days before plunging back into full time+!
Shirley

[Kimberly]

#1169943

Wow, great news indeed! I second Shirley’s comments that your posts are *not* rambling…they are a great resource for other members of our Graves’ "family".

Sounds like 2012 will bring a well-deserved fresh start for you!

Take care — and keep us posted!

[RebeccaJT]

#1169944

Hi Folks

Happy Christmas from England! Well I survived the surgery and I’m at home and recuperating. My thyroid is gone!!

I was in hospital for two nights – went in late the night before for tests and prep, and then was wheeled down to theatre at 6.30am the following morning. Turns out it was his last day of work before Christmas and I was one of three emergencies he managed to fit in. We even managed a bit of joking as he swung by the theatre holding area at about 7.30am to get me to sign the paperwork, as he had a big carry out coffee that smelt divine in my nil by mouth state.

I took my dressing off today and my wound is very neat and healing nicely although I’m still a little stiff and sore (more from the manhandling in surgery, I was warned they would probably scratch my throat with tubes, and my neck feels a little cricked where my head has obviously been tipped back). However the worst of the pain seems to be over, and I’m resting and sleeping a lot as the anaesthetic and heavy duty painkillers leave my body. My voice is weak and thin but OK, and I’m very tired and feel a bit toxic from all the medication.

However, my neck looks so, so, so much better – tapering inwards like it used to. I’ve lost a few more pounds too, I hop on the scales and there is finally gentle movement downwards (I rejoiced when the pharmacist took away my old ATDs, I am SO GLAD to never have to take that stuff anymore, I hated it, every second of it!!!!) – weight wise there’s a long way to go, but I’m not too worried. We’ve started me on 125mcg levothyroxine with a view to perhaps increasing it to 150mcg (or more likely alternating 125 with 150 daily), we’ll see how I go. However, more rejoicing when he told me that for patients on replacement a TSH of 0.3 – 0.5 is usually where most feel best in his experience.

So whilst I feel groggy, tired, sore, and I’m obviously now dealing with the aftermath of an adult lifetime of undiagnosed and untreated hyperthyroidism, and Hashitoxicosis, I also feel immediately BETTER! I just feel grounded, and like my insides are still and calm. That horrible hectic feeling, that persisted even when hypO on ATDs, seems to have GONE and for that I am truly THANKFUL.

It turns out the tingling in my hands and feet was chronically low calcium, so my last endo has proved himself even more incompetent than I thought (or so busy covering his own backside when it appeared that he’d got it wrong, as I’d been complaining about it for months). There was a hairy moment when my hands and feet went numb, my blood pressure dropped and my pulse spiked but I was very closely monitored and they did immediate tests. I’m on a very high calcium and vitamin D supplementation regime as my ‘bones are hungry’ and I’ve been told that the biggest thing I can do to help myself is to stick with the diet my surgeon has prescribed. Now I’ve survived the worst of the exclusion part of the diet, I’m very aware of my gut and can easily sense what causes it inflammation. I’m fairly sure it’s wheat and dairy and sugar. He’s told me that if I stick to my food plan there will be no issues with absorption of levothyroxine.

I have follow up on 10th January, but so far, and it’s only been a few days, I’m very hopeful. I feel better inside. I’m told I sound better. And people have been telling me I look better since I changed my diet. So, so far so good.

Thanks, as ever, for reading. It is good to have somewhere to come with all of this.

(PS this may sound a little eccentric but I’m also keeping an eye on my dog, who has always been nervous and highly strung. She had an outbreak of collitis at the worst of my illness, and the vet felt she was very in synch with me, and distressed and worried by my poor health and the distressing symptoms that come with GD. I’m fairly sure she’s going to calm down now I am metabolically ‘calmer’ too. She has not left my side for more than a few moments since I came home, and sniffed me very carefully when I arrived back! Given they use dogs to detect diabetes, cancer, and epilepsy I can only guess that she’s aware that my endocrine balance has changed. Given she’s such a worry wart it would make me very happy indeed if she also calmed down a little! ).

Best wishes

Rebecca
xxx

[Kimberly]

#1169945

Rebecca – Thanks so much for the update. That’s wonderful news that you are already noticing a difference after surgery! Please do keep us posted.

What an interesting story about your dog! Dogs and cats can actually have thyroid issues as well (although my understanding is that dogs are more commonly hypo), so if you continue to notice those symptoms, definitely have the vet check things out.

Take care!

[RebeccaJT]

#1169946

Hi Kimberley

Thanks. Yes was aware re dogs and thyroid, they can get graves and eye disease too, poor things. I didn’t mean she had thyroid issues, more that she’s picked up on my jingly jangly agitation and she has also been overly anxious. I’m fairly confident that as I calm down, she’ll settle down too. I think she’s already aware that my body chemistry has changed.

Anyway, I need to go and lie down, have eaten far too much again (although of the right things!)…

TV adverts here are now all diets and beach holidays!

Rebecca
x

[snelsen]

#1169947

DARN! I just wrote a long response, it is lost. Hate it when that happens. In summary, I am happy for you, and I know your post op course will go well. You may be a bit more tired than usual. I think you have learned so much. I suggest you keep copies of your labs, and get copies of your visits. It is nice to have your own personal file. Remember, for a while there will be a bit of thyroid hormone running around after your surgery. It won’t take long for it to be gone. YOu are now keeping in touch with your body, and finally you have found good docs who are addressing all your physical needs. You are now on the road to feeling better than you have for years. But it is a road, and everything endocrine takes TIME! and Hashi is another factor.
I suggest you learn the range norms for your lab, they are usually written on the lab slip, but then again, you re in Jolly Old, and I am not sure if NHS is in the electronic world for patient access yet. It certainly is spotty in this country, and most offices are not set up electronically for patient access yet.
Have a good sleep.
So glad you are moving forward with this!
Shirley

[RebeccaJT]

#1169948

Hi Sheila

Thanks. Yes intend getting print outs of all my blood results, have done that so far, and had clocked that I need to be keeping track of normal reference ranges. I’m rather cheered that my surgeon told me we are aiming for a TSH of 0.3 to 0.5 as that is what typically suits most people, so none of this nonsense that a ‘normal’ TSH anywhere in the range means I should be feeling well. Had enough of that with the last doctor!!!! As you know, the UK has the widest ‘normal’ ranges in the world, which means a lot of poorly people get told there is nothing wrong.

Anyway, overall I’m doing OK. My wound is healing very well and I was off all pain medication within four or so days. I can now bathe and wash my hair, and I’m hoping to return to gentle exercise soon – a little swimming and gentle yoga.

My question today is about absorption as picked up on another thread ‘thyroxine absorption’. As you know I’m on a special diet to try and treat any food intolerances to ensure optimum absorption of my replacement meds. This seems to be going well and I’m being really careful. However, I’m not really feeling much better in myself after a first flush of a few days of feeling better. I’ve started feeling worse again.

As I also have chronic low calcium I’m on whopping doses of calcium and vitamin D – I’ve got two different calcium supplements three times a day and alphacalidol first thing in the morning. No one at the hospital mentioned waiting four hours after taking thyroxine before taking calcium. They’ve warned me about iron so I take that at night, and told me to wait before eating but no one mentioned calcium.

I’m feeling a bit annoyed about that as the last week or so I’ve been feeling increasingly tired, and that horrible hypo booming pulse and the reverberating shakes are back. I think my dose is too low anyway but could it be the calcium supplements stopping me absorbing the meds???

I’m back at the hospital on Tuesday morning and I will see my surgeon in person. He’d already left for his Christmas break so it was not him who discharged me from hospital. There was some confusion with my discharge drug list (several shift changes of doctors and nurses and lots of to-ing and fro-ing to the pharmacy) so I’m assuming in the rush they forgot to warn me.

What do you guys think?

Thanks

Rebecca
x

[Kimberly]

#1169949

Hi Rebecca – That’s good news that you are healing up well, but sorry to hear that you are dealing with fatigue again.

Calcium, like iron, is believed to affect the absorption of thyroid hormone replacement. The usual recommendation here in the states is to space calcium & thyroid hormone replacement apart by at least 4 hours, but this is definitely worth discussing with your doctor next week.

Here is some additional info from the American Thyroid Association on replacement hormone. (You will need to use your browser’s "back" button to return to the boards after viewing).

http://www.thyroid.org/patients/patient … tment.html

Please keep us posted after next week’s appointment!

[RebeccaJT]

#1169950

Hi folks

Just very quickly as it is gone midnight here in England. Had my follow up appointment with surgeon today. Very positive, happy with my wound, tweak of my meds. But also had a bit of a shock. Turns out I have papillary cancer – he removed a 1.85cm carcinoma and my lymph nodes when I had my thyroidectomy and I how have to have radioiodine ablation to knock out any other cancerous cells. I did manage a joke that finally I will be truly thin and will lose all the weight I’ve put on ATDs, as I have to have a permanently suppressed TSH for life. This means lots of thyroxine and no arguing with silly GPs about ‘normal’ functioning ever again!

With hindsight, it was the ultrasound that kicked off the process of urgency – I now remember the technician asked in a concerned voice who my doctor was. I was then bumped up the list but he waited until today to give me the pathological rather than just clinical diagnosis – it’s stage one and it hasn’t spread. My prognosis is excellent. He also said my thyroid was extremely inflamed indeed and I must have been suffering horribly – I really truly am not MAD, just very sick. I have a copy of his letter, he said, ‘Your GP should enjoy reading that one!’ (more laughs).

I did cry but I did laugh too – it was easier to hear knowing that the tumour is out of my body. He is also an AMAZING doctor and I trust him. He gave me a rub on the back (in a fatherly manner I hasten to add!!) as we walked down the corridor and he told me not to worry, he was going to make me better. Given the complete battle I’ve had with idiotic doctors, I’m extremely pleased to report that I believe him!

Anyway, more to say about diet, levels, etc etc but for now that’s the big news. I notice lots of people have read this thread, I truly hope it is helping, particularly those people who are turning up ‘normal’ blood results and still feel awful. DON’T GIVE UP!

Lots of love

Rebecca
x

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