At one stage I read about a different blood test that can help define what to do when normal tests are inconclusive. Does anyone know it?

[ShakirasMum]

I had Graves Disease and a Parathyroid Adenoma so had thyroidectomy and parathyroidectomy at the same time 2 yrs ago approx. I tend to be unstable, but thought I had finally improved. At present I have normal T3, normal T4 but low TSH. How I feel lines up with being hyperthyroid, but because of the correct T3 and 4 the doctor is inclined to leave me as I am. I can't find where I read about a different blood test and would love help. I have bulgy eyes, itchy skin, fast heart rate, weight loss and am ratty....I need help!

[Jackie]

hI poor you ! Sounds as if you have had a dreadful time Are you sure you have not suddenly gone Hyper due to the Graves, it does sound like it.

I am wondering if you have had a recent test for the Adrenal glands? The only god test, according to my Endo and some others, s a 24 hour urine test with a cortisone tablet ( script) at midnight and a blood test at 9am. This is a reliable test and you can be sure of the results Ha

Has your Pituitary gland been retested? This is a simple 24 hour urine collection.

I am assuming you have been tested for the other associated autoimmune ,hormonal diseases,Diabetes 2, B12+ Foliates ( needs o be high in range), Also hormonal vit D, if low , vital for you to have a corrected calcium test first, as must not be over range. Then a retest after 4 months to test for both. Also iron/ferritin.

I am sure thee would have been tested post OP ( or should have been ) ,however, things could well have changed now

You may have done this,i am sorry ,all I can think off.

I do need my FT3 right at the top of range, but to be honest, if you think yours is right, I do not see the significance. I hope you always have a print out with ranges of blood tests? Receptionist GP and hospital, secretary, be sure they give ranges ,as useless other wise.

It may be that the results are not as good as you have been told! I have immeasurable TSH, which can by lots of docs, effect my treatment, I am very hypo.I am lucky as have a wonderful Endo ,you understands this

I hope this gives you a few ideas.

All the best,

Jackie

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[ShakirasMum in reply to Jackie]

hi Jackie, thanks for the reply. I do have low vit D (41) and my corrected calcium was also fractionally low. I have never had a 24 hour urine test at all, nor has my pituatary gland been tested at all to my knowledge. normally I don't feel hyper, usually I feel best when my T3 and 4 are in the low range but I allow the doctors to make me take enough that they sit in the normal range.

I see my (new) dr today. I recently moved which is why all the tests were run and we discovered the low TSH just before symptoms started. I'd had a virus, which sent me there. I will copy your reply and take it to the dr. I am sure I am hyper, the symptoms are increasing since I have not changed meds. typical of me, I have to take 125mic one day and 150 the next, which HAS kept the T3 and 4 within normal levels. if I took either 125 or 150 daily, every day, I was going over or under. but I am never easy! I really appreciate your help.

[Jackie in reply to ShakirasMum]

HI I can see you have a problem.Both Adrenals glands and Pituitary glands are usually tested when a problem. However, the Pituitary test should always be done with low tSH. It is often elated to a bump on the head, but even a slight on when a child, latest research.I am amazed that you have not had both tests done as you have had your OP. Also if Calclum and D low, you need both treated on a script,, as recommended by NICE.. retest in 4 months., then ideally 6 monthly.. If these are low apart from Osteomalacia, it can cause ostopeonia, ( pre Osteoporosis.). As calcium is an electrolyte, it is best not to even be high in range, but low is not good.Ideally all this should be under an Endo.it does not sound as if you have one?If you decide to see one, do find a really good one yourself first, lots of research! only then ask GP for a referral.

I think you are right to keep low in range, I am sure the docs like that, usually people want the reverse! My Cardios etc always say to take just enough meds to be OK for thyroid. I

Best wishes,

Jackie

[ShakirasMum in reply to Jackie]

Thanks Jackie. With the calcium, I take some whenever I feel low. Having had the parathyroid growth, which meant I was high calcium for 7 years, I know the signs of low calcium when they get to a certain point. I actually had tetany. So when I feel my skin creeping on the back of my neck I go and take calcium with magnesium and vit D. It is unusual for bloods to show low calcium, but I believe it is because my 3 remaining parathyroids were off for 7 years to try to control the leak. I think they sort of stick occasionally. I will be getting retested for all of them in 3 months, we have very slightly adjusted my thyroxine down. Now I take 125mic 5 days a week and 150 on Wed and Sunday. Hopefully this will do the trick. The doctor was interested reading the replies and took them into consideration.

[Jackie in reply to ShakirasMum]

Hi I am sure you are right about the calcium. I have sky high calcium and PTH, long complicated story. However, when calcium really high I get shakes, they are horrible, Unless aware of the calcium it can be hard to identify without a blood test, but no blood test totally reliable,, how I wish they were!

Nice to have a GP willing to take advice.

Best wishes, I hope you have some respite now.

Jackie

[ShakirasMum in reply to Jackie]

one thing with getting graves disease, it was through that that I discovered the parathyroid problem. after the op it was very interesting, even though uncomfortable and scary, experiencing the tetany. it began by feeling like my skin on my neck was tingling, then the hair crawled. later I felt like I'd a bladder infection...all built on top of each other. but I now can pick low calcium easily! high I found harder to pick.

[Jackie in reply to ShakirasMum]

Hi , experts know now that bad shakes is always calcium, a bit like Parkinson disease. Just a thought, I am sure you know calcium is the most important electrolyte, do you also keep an eye on Magnesium, Potassium and sodium?Even now a lot of ignorant docs. My 4 cardiac arrests due to low Potassium, 3 acute renal episodes ( coma) due to high Potassium and other U`s and Es. Worth keeping checks.I have mine ideally 3 times a day, but at home, GP will only do one or two a weeks, cost, of course!Not enough known only brilliant Endos and even more brilliant Cardios.

Best wishes,

Jackie

[ShakirasMum in reply to Jackie]

I went over to Western Australia from South Australia, where I live, in February. I didn't know that the place I was going to was tropical, though I knew it was hot. I'd taken lots of frozen bottles of water in a very good esky for the trip, since my car's airconditioning didn't work. when I arrived at the end of the 3200km trip, I was very shaky and wasn't sure if it was my thyroid levels that were the cause. later on I began to feel as if I was going to cramp and realized it was lack of salt. I needed an extreme amount of salt that night before the shakiness and crampy feeling left, but I listened to the symptoms and took it accordingly. I know it was salt because putting table salt in water and drinking it was palatable. so yes, I learned about the need for all of those. one wonderful thing about illness is it teaches us to recognise what our bodies are saying. the rest of the time I was in Newman WA I had lots of electrolyte drinks. South Australia is dry and so the heat doesn't cause the same sort of problems

I don't get a lot of tests done generally, more I listen to my body and take what has worked in the past. if I still am not right, then I go to the doctor and get bloods done. mind you, it is only in the last couple of years, or 7 if you count the parathyroid, that I have become more fragile than before.

I am incredibly lucky. I have very good bone density, which was even very high just before the op...after a 7 year drain from the malfunctioning parathyroid. I do have a tendency to get strange things, generally getting them in a milder form than most and getting over them quicker. usually autoimmune things.

[Jackie in reply to ShakirasMum]

SOunds very sensible. I usually treat doctors and certainly hospitals as "last resorts!" Any way safer lthat way.

Your life sounds so different from here, certainly important to be to able to rely on your self.I hope things improve for you.

Jackie

[Hennerton]

Are you thinking of the test for the gene that impairs T4 to T3 conversion? Without blood test results and reference ranges it is hard to know whether or not you are converting but even if you were found to be clear of this gene, there are other reasons. You may be anaemic, which causes this problem. You need to have a full iron panel, as Jackie suggests and all the other vitamin tests.

Are you having a flare up of thyroid eye disease, hence the bulging eyes?.

My instinct is that you are not converting, therefore actually more hypo than hyper, but feeling hyper, since T4 is not actually getting into the cells. After thyroidectomy, I think it would be unlikely to be hyper unless for some reason you have high antibodies still. Have these been tested? What levels of medication are you on? Some T 3 might improve things for you.

If I were you I would ask for a referral to an endo of your choice, as there are so many considerations and here we can make suggestions but someone needs to tie them all together and really get to the bottom of your problems.

I do hope you get help soon. xx

[ShakirasMum in reply to Hennerton]

my blood work was all good. haemoglobin 143. cholesterol 6.1 LDL chol 3.9 HDL 1.6. corr cal 2.14 250H Vit D 41 but everything else great. TSH 0.37 Free T4 19.5. I don't have the written T3 results since I got them over the ph but they were normal. I do have thyroid eye disease which up till now hasn't required treatment so I stopped going every month. think I will need to go back though. I was ok for a while, nothing was getting worse though one eye is bulgier than the other and weeps of a morning. has been like that for over a year.

[ShakirasMum]

I am going to take the laptop along and show the dr these replies. he is the sort of dr who will enjoy them and so will be able to decide what steps to take without my faulty memory causing any problems. do the rest of you find that you don't think as well any more? I used to have a good brain but now find it difficult to think really clearly and recall things quickly. I changed from being a school finance officer to working with dogs and horses because I can no longer concentrate well! mind you, I love this new work....I am a horse and dog person.