# remission from graves over, after 16 months!



## kathlav

Hi all,

had my bloods tested yesterday morning and at 6.20 the same evening had a phone call from the doctors surgery, saying that my FT4 was 68.0! (12-22).My highest FT4 result so far, when I was first diagnosed back in 2011 my FT4 was 64.5 and my symptoms were a lot worse than they are now.

I would have thought that with a higher FT4 result my symptoms would be more severe? Not complaining!! really don't want to go back to those days.

I would say my worst symptom is the shaky feeling I have, hand tremor and my legs feel like Jelly. There are other symptoms such as not sleeping well, feeling very warm, heat thumping very hard, slightly swollen right eye lid, and fuzzy head.

The last blood test I had done in July and my FT4 was 15.1(12-22) and my TSH 1.54, so in 3-4 months my FT4 has rocketed and TSH plummeted to 0.01. I am amazed at how quickly things got worse.

My GP has put me on an initial dose of 15mg per day, she wanted to put me on a higher dose but I respond very quickly to the carb and don't do well on heavier doses...I would rather take it gradually down than try bringing it down too quickly, so I requested the lower dose..My next blood test is in three weeks time. Hopefully things will have calmed down by then.

Have not got all of my results back yet but, I shall update when I get them, also had a bone density scan done as I have broken a few bones since 2011 and should get those results next week.

fingers crossed nothing shows up on that, and that I am just clumsy and unlucky.


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## Andros

Have you ever had an ultra-sound or RAIU (radioactive uptake) of your thyroid?

I am sorry that you are rebounding.

Hugs,


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## kathlav

Hi Andros,

Yes I had an Radioactive uptake scan in the early days, and it was revealed as graves. I didn't get the data from the results so don't know the numbers.

sitting up at 12.40pm unable to sleep, I have been getting nose bleeds for about a year very regularly and had one this evening, making it difficult to sleep. Well that and the Graves......

Husband snoring upstairs, dog snoring downstairs I don't stand a chance, and number two son still not in from his evening out.

Nothing is made easy! Thanks for the hugs, am getting used to the rebounding hugs4


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## jenny v

Can you remind me, how many times have you been in and out of remission with Graves?


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## kathlav

Hi Jenny,

This was my third try, not sure if I can count the first one as a remission though.......as they thought initially I had thyroiditis and took me off meds after about 6 months, but of course it came back as I had graves (which I knew).

They had given me the choice before this trial, of ablation or thyroidectomy, but I felt so good this time I thought... no give it another go, and it was good for a while!

I shall have to wait for an appointment to come through for my endo appointment, not sure when that will be but my GP is very good.

Can I ask how things went for you after TT, I realise with Hashi's in 2012 on top of Graves your symptoms must have been very hard to control with meds. But in that interim between 2002 and 20012, you didn,t feel the need to have TT?.....If you had,nt of got Hashi,s would you still of has TT?

Thanks.


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## jenny v

> Can I ask how things went for you after TT, I realise with Hashi's in 2012 on top of Graves your symptoms must have been very hard to control with meds. But in that interim between 2002 and 20012, you didn,t feel the need to have TT?.....If you had,nt of got Hashi,s would you still of has TT?


Things are so much easier after the TT, no more of that horrible roller coaster between hyper and hypo. I had been pushing for surgery for the last 3 years before it actually happened, but I had an endo who was hell bent on me keeping that damaged mess and I didn't know any better at the time. By the time I actually found a good doctor who realized keeping my thyroid was not beneficial to my health, my thyroid was a mass of scar tissue that had grown backwards in my neck and displace my esophagus. It took almost 4 hours for my ENT to remove. If I had had it removed years previously, it would have been a much easier surgery and I would have been stabilized and healthy long before now.

If you're even considering surgery, I would do it sooner rather than later and avoid the same type of mess I had.


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## kathlav

Lovlkn,

No my TSI was not tested in fact I don't think I have ever had any TSI tests run, or any antibody tests other than TPO which has been tested twice. (0-50) 120 and 112 I think they came out at.

My own GP seems to be a bit better than my Endo at running tests.......and I lucked out with a Locum this last time who has ordered

thyroid panel including T3 for the very first time! and a full autoimmune anti body panel(again for the first time) as well as a full blood count.

I haven't had time to go and get the print out yet, but will probably wait till Thursday when I should have the results of my bone density scan as well.

I have already decided to have rid of it one way or the other, I started back at work today, and here in old blighty we are experiencing cold heavy fog and a bitter cold spell. I have been so hot today I wore my vest t shirt inside and was still sweating bullets. My legs feel like jelly and my half hour walk into work was excrutiating, I had to keep sitting down. I felt completely useless. Leg cramps and heavy arms and shaking and those are only some of the symptoms I am experiencing.

So yes if they offer (which I expect they will) ablation or surgery , I shall be saying yes please to the surgery. :a1Thyroid:


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## kathlav

Hi Lovlkn,

I am on the NHS system in Britain, and things move very slowly. I shall tell them my preference and I am hoping that they will agree (as I say it was given as an option at my last appointment last year).

Gotta get an appointment with the endo yet!


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## Andros

It might serve you well to go ahead w/TT. Keeping you in my thoughts and prayers.


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## kathlav

Well, I went to pick up the test results that they did have today.

Unfortunately my dexa scan results have not come through yet, nor the autoimmune blood tests,

but I have got my first ever FT3 results 29.8 (3.20 - 6.80), FT4 68.1 (12.0- 22.0), TSH below 0.01(0.30 - 5.00) No surprises there.

Haematocrit and Haemoglobin estimation both ever so slightly under but they usually are.


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## Octavia

OMG...those results are critically high. What's next for you?


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## kathlav

Hey Octavia,

Yes my highest FT4 so far, Well I have started back on carbimazole 15mg per day and also propranolol 30 mg per day, the shaking is getting better and my leg muscles don't feel quite so weak.......blood tests in two weeks time. I am avoiding the higher doses of carbimazole because I tend to get very itchy which drives me nuts, so will just have to take it down slow.

I am awaiting results from a bone density scan , as I have had two breaks since being diagnosed with graves, and just want to make sure it's not as a result of graves.

For me this was a last ditched attempt at being med free, I shall wait for my appointment to come through from my Endo and then hopefully TT, if not ablation.


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## jenny v

Holy cow, those are high numbers!! Your poor thyroid is just a hyper mess.


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## wkedblonde

Hey Kathlav! Reading about your shaking makes me think about my own problems. I was diagnosed in 2013 with Hashimotos and then earlier this year with Graves as well. Recently I have had the feeling that I am shaking non stop. All of the doctors I have seen really dont know what to tell me except that they think it is related to the thyroid. My thyroid doctor tells me its not because my levels are normal. So frustrating. MY options were medications, radioactive ablation, or thyroid removal. I opted to try Metimazole first. I wonder if I am having a reaction to the medication or something. The only doctor left to see is a psychiatrist and I know Im not crazy.


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## wkedblonde

Kath, I will for sure as soon as I get them. I was on beta blockers for awhile, went off, then back on, and now I am off again. They didnt help the shaky feeling. In fact, nothing does. July 10th was when I started Methimazole. I started with 2.5mg everyday and then on August 21st was cut down to 1.25mg per day. On September 25, he changed me to taking 2.5mg - 2x a week.


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## kathlav

Have my appointment through for Endo, and it's not till January 25th! Bit of a wait, but it is what it is.

But have got in from work today to find a letter from my GP, who has the results of my full blood report and wants me to make an appointment to discuss, the only part of the blood tests that I haven't seen yet are the autoimmune antibody tests.

and the results from my dexa scan.

Shall make an appointment for tomorrow, it may be that they will have the results of my blood test that I did today as well which would be handy to see. Only TSH and FT4,but am hoping I have got my FT4 down a bit from the original 68.1.


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## kathlav

Hi all had my appointment with my GP today, and my FT4 has come down to 47.2, which is a good 20 points in a month. Unfortunately I went in with a terrible cold and sore throat which immediately put my doctor into a fizz!, she did an urgent blood test and told me not too take any carb until I hear back from her today.

She also wants me to up my dose to 20mg, as long as I get the ok from these bloods.

I also found out that my bone density scan came back normal and my auto immune panel has to be re tested in 3 months time? I know not why.

My blood pressure was 159/91 so she wants me to go back on the beta blockers and she has booked me in for an ECG next tues at the surgery.

I have also come out with anti biotics for my cold which the ladies at work will be very envious of.....as we are all suffering sore throats cough and runny noses.

So I am feeling quite guilty, everyone at home has this terrible cold as well. I have been asked twice before to stop my meds because of severe sore throat /and blood tests and nothing has ever come of it, I know its a precaution we all have to take.

Can I ask if anyone has ever suffered with Neutropenia? after getting a sore throat , How common is this?


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## Lovlkn

My experiences were when I was hyper - and the doctors were reducing my levels of thyroid hormone with anti thyroid med's , my throat was sore for the majority of the time. They ran the labs to confirm it was not a negative reaction from the medications.

I did see a therapist during my decent into what turned out to be hypo. Hyper to hypo in 3 months - can tend to make one a bit mentally unstable. Good news is it levels out.

Boneloss - I also have this as I was hyper for some time before ab official diagnosis. This should slow down once your thyroid hormones are stabilized.

You were/are extremely hyper - hang in there!


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## Lovlkn

> Pretty sure I shall be complaining about the weight GAIN soon....can't win.


Stay positive - and maybe think about switching those candy bars to protein - I have recently become addicted to Oven Roasted Dark Chocolate almonds. Drink flavored club soda to help with sugar cravings.


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## Octavia

If what you have is truly a cold, antibiotics won't help one bit. But I do hope you feel better soon!

I'm not sure I've ever heard of stopping anti-thyroid meds because of a cold...is that what you're saying? I'm not saying it's wrong...it's just a practice with which I am unfamiliar. Then again, I've never taken anti-thyroid meds, so there's a LOT I don't know about them.


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## kathlav

Hi Octavia,

Yes I have had to stop taking my carbimazole three times now due to a sore throat and high temp (difficult sometimes to know if you have a high temp or just running on hot as per the norm).

As I understand it the carbimazole can very rarely, stop the body from producing neutrophils the white blood cells responsible for making bone marrow. This can happen very quickly with terrible consequences, the neutrophils fight off micro-organisms and usually the first sign is a sore throat! Neutropenia is the result and it can mean quarantine and bone marrow transplants. I reiterate this is rare I have since looked it up , 3% in 10,000 people per year.

It does state this on the medical info which comes with the tablets, that if you get a sore throat and temp to stop taking the carbimazole and get a blood test straight away, hence my doctors reaction to taking my bloods herself and insisted on getting the results back the same day.

I think it is more likely to happen within the first 2 months of taking anti thyroid meds, and when your antibodies are in full throttle.

I think the antibiotics were a just in case kind of thing , although tonsillitis and laryngitis is rampant at the school I am working in, and since being on the antibiotics I do feel slightly better so maybe it was something bacterial.

Anyway here's to feeling better getting rid of this cough, and stop wetting myself with every splutter !!


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## Octavia

Very interesting! Thanks for explaining...I learn something new every day!


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## kathlav

Just a quick update,

saw my endo today and have been refered to a surgeon, the ball is rolling!

ooh and forgot to say my FT4 is down to 26 (12-22)!


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## kathlav

After seeing my endo and pumped by the 20 point drop in my FT4, to 26.I decided to reduce my carbimazole from 15mg per day down to 10mg, my endo also said to stop the propranolol. So I felt things were going along nicely.......

Had my bloods tested on Monday and FT4 back up to 39.5(12-22), I had been experiencing chest pain ,breathlessness, palpitations and feeling hot all the time with nightly sweats, so back on the propranolol and going back to 20mg carbimazole.

Good news though, I have an appointment with the surgeon on the 8th April, so gotta get the bloods back on track.


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## kathlav

Had my appointment with my surgeon today who was wonderful.....feel very confident about this now!
He has requested an ultra sound and blood tests for before surgery which he feels will be in 3 to 4 months time, my blood tests from last week put my FT4 at 23.4 (12-22) so it has come down nicely and as long as I keep it below 30 he is happy,but preferably within range.
so all is a go!
He will do a total thyroidectomy and I shall stay in hospital for 2 nights keeping a close eye on my calcium levels, longer if necessary.
He is a thyroid specialist, but does all neck and throat surgery.
Can't wait just excited to get going.


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## kathlav

Things are moving along nicely, May 5th Pre opp, May 12th FNA/Ultra sound and now have a date for the surgery June 8th.
my path has been plotted


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## kathlav

Surgery date has been changed to the 20th June. I had my ultrasound today ,No FNA, the doctor performing the ultrasound said it was a very convincing scan, and that I also have a small amount of thyroid tissue growing upwards along the trachea, this apparently is very common in an overactive thyroid. He will inform the surgeon and it will be up to him if he removes this aswell! I couldn't see why he wouldn't remove it?


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## jenny v

Sometimes they are very cautious about removing bits that are super close to important things (like nerves, the trachea, etc.) to avoid any kind of accidental damage. If they can't remove that part, you could always ask about doing radioactive iodine to kill it off. But you might see if it gives you any trouble after surgery first, if they can't remove it.


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## kathlav

Hi Jenny,Thanks

Yes I have just read LBC,s post about her thyroid disaster......and I can completely understand the reasons for being cautious. I shall just wait and see what he says.

I do hope LBC is well on the way to a full recovery.


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## kathlav

Well it's the big day tomorrow, going in for my TT. Have lots of trashy magazines, ear defenders, music and headphones.

will update on the flipside.

ooh and most importantly have organised my proxy vote for the EU referendum!!


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## jenny v

Good luck! Let us know how it went when you're able to.


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## kathlav

Hello all,

well I am up and sitting in my hospital room, i have had my TT everything went well. The worst bit was the camera scope they put down my nose to look at my vocal chords sprung on me whilst waiting to go into theatre.

I was due to leave today, but have experienced some tingling in my finger tips and around the face, and it was due to low calcium levels so am in tonight for more observation and to dose me up with calcium.....hopefully out tomorrow, fingers crossed.

Other than being a bit sore, I have to say I feel a lot better than I thought, even the removal of the drain didn't phase me. I have been eating normal foods with no problems and have a healthy appetite. I did experience quite a severe headache and earache when I came round with a bit of nausea, but the meds soon cured that.

All in all, not too bad.

ooh forgot to say am on 125mg of thyroxine.


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## Lovlkn

Awesome news!!

A cool pack on the incision feels really good and keeps inflammation down.

That is a good starting dose for someone weighing in the 153lb or 69kg range.


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## kathlav

Hmm, am usually between 71- 73kg at the moment my weight has increased over the last year but has stuck at around that marker. Although I feel I am over my ideal weight.

Ok I suppose the dose is not too far off....we can work with that, i have noticed since I had my dose yesterday that I have had a lot of minor muscle twitching which has eased off this morning I shall see if it increases again when I take my next dose.

Thanks all for the input, shall keep you updated, and probably harass you all with questions over the next few weeks.


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## jenny v

Have they already started you on the thyroxine? I stayed off of all meds for about 10 days because my thyroid dumped a ton of hormone into my system during surgery and I was pretty twitchy/hyper for a bit.

You're much tougher than I was about the drain! I was so grossed out when they were pulling it out of my neck. There was so much tubing!


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## kathlav

Well I was released home after my last calcium reading came out normal 2.22 after the first was 2.06 (2.20-2.60), i am on 3 tabs twice daily of sandocal 1000.

I am still getting twitchy muscles especially noticeable to me are the permanent eye twitching/palping, very irritating.

I have also been given paracetamol and codeine for pain relief. Still feeling ok, a bit shaky in the knees after a long day of waiting around for hospital release. Two weeks till my follow up.

Hoping to get a good nights sleep!


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## kathlav

Hello all,
well am still recovering well, but really struggling with the effervescent calcium tablets calcium lactate gluconate 2.268g/calc carb 1.78g 3x tabs twice daily. They are very fizzy in fact they make so much noise my v large mastiff dog runs a mile to get away from the scariness, and will not return till it's all gone.
They give me terrible wind, taste like acid and are giving me dioreah, I see the surgeon on Friday and am hoping he says to give it a try without and see what happens.
I saw a nurse at my Gp's today as the knotted ends of my stitches were digging into my skin and becoming sore, so I asked if she would cut them out if she could get them.
Anyway they came out ok, took my bloods which were calcium and phosphate levels, and then comented that I should not be surprised if I get put on HRT if my calcium levels don't return to normal!
Is this true?......I don't for one minute think she would fib, but is that normal practise?


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## blackngold

HRT hormone replacement therapy that you my friend are already on I'm confused


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## kathlav

Hahaha,
Blackngold I am confused too, I think she was referring to female oestrogen hormone replacement, usually something menopausal women use to help ease symptoms through this transition.

Anyway had my apt with the surgeon/consultant today, and had made a list of questions just incase they were not answered. The poor lady that went in before me who had obviously also had a thyroidectomy came out crying and had been given bad news about her pathology. It was a nasty shock for her, and I am thankful my news was better, but felt very badly for her. I hope she is ok
As I said pathology was fine, He managed to remove all the thyroid tissue, as it had started growing upwards along the trachea, he remarked that the parathyroids may be permanently damaged but my calcium level is 2.39(2.20- 2.60)on 6 sandocal 1000 tabs per day and I am to have another calcium test in 5 weeks time, and to see him in 6 weeks with results.
Had another camerascope down my nose to look a vocal chords (hate that bit) everything ok,My next blood work includes thyroid panel and vit D as well as bone panel and parathyroids, he did say he may have to increase my thyroxine depending on results.

So all in all, scar is mending nicely energy levels returning to normal, still taking huge amounts of yukky calcium and on 125mg levo.

sending well wishes to all.


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## blackngold

sorry to hear about your parathyroid !!

I feel like i need to be on atleast the amount that you are taking but waiting the full six weeks to retest sad about the other girl and hoping she recovers too!! damn the luck anyway

I'm grateful for this website and all the support here keeps me a little more sane at times haha hopefully your parathyroid kicks back in !!!!

I weigh about 154 now so an increase will be a good thing if this doctor wants to be a douche about it then ill figure it out

Cool about your scar mine was orig infected and is now keloiding witch i could really care less about at this point .

GOOD LUCK !! thanks again for responding


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## kathlav

Saw the ENT (surgeon)today,

My FT4 was 26.5 (12-22), which he said he was surprised about because 125mcg of Levo wasn't particularly high a dose for someone of my weight....and suggested taking 100mcg Mon, Wed, Fri and 125mcg the rest of the days in the week.
My Parathyroid hormone was 1.8 (1.8 - 6.8)which is right at the bottom of the range , I think I have got the range right the lower end is defo 1.8
What confused me was he said my last reading was 1.7 so it was creeping up, especially as I had reduced my calcium intake from the original 6000mg to 3000mg shortly before the draw.
But as you can see in my previous post my last calcium result was 2.39 (2.20-2.60)maybe they have a way of converting when comparing different ranges? but I was within range!
Anyway he has got me to reduce my calcium intake to 2000mg per day and re test beginning of October, full blood test before I see him again mid November.


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## kathlav

I Had my first Endo appointment since my thyroidectomy Mon 31st October. On the whole I feel ok, increased thirst, and some cramps in calves and chest muscles occasionally. I do get quite tired by the end of the day , and I am finding napping helps a lot.
My weight has increased by about 5/6 lbs
I was certain that by now my levels must have been within range and if not a bit low, but my T4 was 22.2(12-22).TSH 0.06
My endo has reduced my thyroxine to 100mcg per day, can I ask if you think this is quite a big jump down? especially as I am so close to being within range.
My calcium has also been reduced to 1000mg, my calcium blood test was 2.6 (1.8-6.8)this has increased since my last test but it's still on the low side just hoping my parathyroids kick back into life soon.
I have my next endo appointment in 3 months time.


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