As some on here may know I had full thyroidectomy in May 2019 struggled with thyroid meds but got on T3, then in April 2020 I had 2 over range calciums which the gp reluctantly sent to the endo who requested PTH, calcium, vitamin D both blood tests in june/Aug came back as over range pth and top end calcium ( normocalcemic hyperparathiyroidism) endo wrote saying I probably have primary hyperparathiyroidism, but after several botched blood tests dismissed me from the endo clinic.
My last 2 bloods jan/Feb this year also show normocalcemic hyperparathiyroidism both being at the top end of normal, so my son just paid for me to see a private parathyroid surgeon in Oxford, (Friday 18th November) my ultra sound scan as picked up a 7mm nodule on the left side of my neck the very place I have all the throbbing pain, but the surgeon thinks it may be on a nerve. 😢
He also agrees my blood work shows there is something going on with my parathyroid glands, he said the ultrasound scan can not show what the nodule is only that there is one there, it could be an enlarged parathyroid gland an enlarged lymph node or a piece of left over thyroid from my thyroidectomy, he is trying to arrange for me to have a pet chlorine scan through the nhs at Liverpool, does anyone know if your thyroid can regenerate its self if a piece is left behind?
I'm so pleased something was found I now know I'm not going mad and I've not imagined this pain and the way I've been feeling since my parathyroid glands and calcium went over range 😢😢
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birkie
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Hi slowdragon ❤️Unfortunately as I'm sure you know I tried the liquid levoroxine but that also gave me bowle problems, the gp put me bk on T3, and although I've had a couple of bouts of cramps and very loose bowels I'm sticking with this T3 for now, the gp also said it would be useless taking thyroid bloods after my stint on liquid levoroxine as it's not long enough to do them, I'm due to have my bloods Done in around 2 weeks but my TSH was 7.4 that was around 12 weeks ago ( no T3, t4🙄).
As you mentioned it's very hard to do parathyroidectemy after thyroidectomy but this surgeon as performed both he informed me it is very risky and tricky, but said if the nodule is fixed on a nerve (as he said its is either very close to the nerve or actually on it as seen by the scan) then it would be deemed inoperable 😢 too risky.
He was going to do bloods for me ( £75) but after seeing my results from my last 4 he kindly told me there was no point in him waisting my money as he can clearly see I have some problems with my parathyroid glands, just waiting on word from Liverpool now as the pet chlorine scan will show what they are or are not😊 thanks for the reply slowdragon ❤️
Gp prescription was for 20 micrograms they are hard capsules 10micrograms 28 in each box (why do they do that? When a month is 30/31 days its mad 😠) I started on 10 for 14 days then went up to 20 so been on 20 for 4 weeks now.. I'm splitting it 10 morning 10 late afternoon I keep everything away from them for 1 hour, unfortunately I can't physically spilt these as they are those plastic looking capsules so if I need to increase it would be 30 not 25😠.. Typical eh.. I did read on the side of the box tho you can open the capsules and split the powder inside ( honestly I'm thinking of getting a mirror and razor blade and cutting it like a bloody crack addict😂.. I need to sort out my vitamins especially D as the better you spray gave me runny bowles it says on the side may cause a laxative effect (it did 😢) I was also doing the B12 better you and that said can cause a laxative effect so double wammy, my gp will not do vits minerals although I can ask again see if they comply this time as I can't remember when they were last done 🤷♀️
Hi birkie, To give you a straight answer to your question of whether any residual thyroid gland can rejuvenate after a thyroidectomy, the answer is yes whether it may have been a partial or complete thyroidectomy. I had 2/3 removed around 28 years ago because of going overactive with a goitre and now I seemingly have 1/2 a thyroid gland with a multi-nodular goitre. I don't know whether parathyroid glands have become involved this time around but I'm going to ask hospital endo to check this out in view of my having had such a bad dexa scan not so long ago. Hope this helps!
By the way - you are definitely not going mad although a lot of endo's may make us feel that way - take care.
Funny you should mention the dexa scan, I've had that in 2020 showed ostiopein in total spine and left thigh bone, I've also passed several kidney stones since 2004 when I got my first diagnosis of primary hyperparathiyroidism for which again the endo dismissed me, the private surgeon looked through my records and told me I've probably had this condition since 2004, OK I said then why did my thyroid surgeon not seen it when I had full thyroidectomy in 2019, he went on to tell me the parathyroid glands are around the size of a grain of rice even if they become over active they are really not that large enough to be seen, I have removed para glands of 2mm and have to digg for them, so it's not unusual that your thyroid surgeon didn't see anything.. besides he was probably engaged in just removing your thyroid gland to bother about anything else.
I've now been diagnosed with ostiopein, kidney stones, calcified deposits in joints, calcified tendonitis, lost 5 teeth, calcification in the LAD in my heart and I have all the symptoms of a parathyroid problem.. Peeing for England always thirsty, bad bone pain, headaches, palpitations, sweating ect, but all this was put down to chronic fatigue syndrome and fibro in 2005 wrong diagnosis it's been a parathyroid problem all along😠
OMG - poor you, sometimes life just isn't fair! As for my dexa scan, it wasn't that bad 3 years ago and now suddenly I've deteriorated terribly with my spine an utter mess and now have a lot of pain from arthritis. I'm also being told I have CFS again (private endo said it's long standing as I had it years ago and have probably crashed) - really don't know who I can believe anymore. Just keep reading and asking questions on this amazing forum as well as doing my own tests in an attempt to eliminate things. Trouble is my goitre is definitely feeling uncomfortable and I seem to have a swelling to the side of it so will have to go back to the hosplital endo whom I have no faith in at all😢
I definitely have no faith in endos to😂.. It boggles the mind how we are treated, way before I finally got my graves diagnosis I asked my gp several times if my symptoms were not related to my thyroid as I have all the symptoms of an overactive one, he got up from his chair and proceed to examine my neck saying in a very strong tone.. "you don't have a goiter so there is nothing wrong with your thyroid" how very unprofessional, so when I eventually got my diagnosis over a year later I made a point of seeing him as soon as I got my bloods printed out ( hyperthyroid) explained to him my blood results showed I had hyperthyroidism and NOT the menupause like you have diagnosed for over a year... Silence by him I also went on to ask if hyperthyroidism (graves always shows with a goiter?... Silence again.. He only moved to re prescribe the awful anti thyroid drug I was on which never worked hence me going into thyroid storm and having my whole thyroid removed 😠 in any other profession people like that would be sacked😠😠😠😠
It really does beggar belief doesn't it! Little did I know that almost 40 years ago I was going to be labelled for life when I was told I had post natal depression after the birth of my first son which I knew wasn't right but I was weepy, couldn't sleep, felt very anxious and hot wired and weight just dropped off of me. Same thing happened after birth of second son which I now know was post partum thyroiditis but the depression seed was sown. Around 5 years later I was ill with a Coxsackie B Virus and eventually realised that I was losing weight dramatically again and sweating for England (GP said it was depression but I refused AD's and demanded that I be referred to a specialist). She certainly had egg on her face when she learned that I had gone very overactive with a goitre. At least she took me seriously when I next appeared in her office with a lump in my breast (she thought it probably would be a simple cyst) but one look at my face and she said she would refer me to a specialist (3 weeks later I had a mastectomy). My philosophy now is that it is my body and I want a say in things and would like to work alongside someone rather than being looked down upon and patronised.👍
You are so right in ever thing you have said... I'm so sorry you have also been badly treated and you had all the hyper symptoms, and also loosing your breast😢 that's just awful, as women we seem to be presented with the depression, anxious /hormonal badge by gps and some specialists 😠 I fear it's a way of our health care providers to dismiss us as depressed, anxious, the change, or just your hormones, in this diagnosis they really don't need to treat us only offer anti depressants or opioids for pain, not actually diagnosing the real problem 😠 and try telling your gp, and you get the old look... I'm the doctor I know your body better that you!! Well a lot of people along with both of us have proved their gps/specialists have been very wrong in there diagnosis.But this is no comfort to us who suffer year in year out.. Just makes me soooooo mad.. 😠😠😠😠
It's not all been bad Birkie as I found a virologist through my ME magazine who gave me my life back by putting me on NDT and I was so grateful that I could still be a mum to our two young sons. I was never going to be defined by losing a breast as nobody even knows unless you tell them and I still maintain that having thyroid problems is much, much worse as so many on this forum will testify to. Anyway, that's enough of the ranting but do take care of yourself and hopefully we will hear that things are now going well for you as you tread into the next part of your thyroid journey😇 Hugs!
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