Bloods just back. Parathyroid levels are 8.6 pmol/L (range: 1.6-6.9).
Serum Calcium is 2.47 mmol/L which I interpret as normal.
Vitamin D levels previously 29.1 nmol/L but increased to 65.7 after loading dose. Now 48.
Total Thyroidectomy 10 years ago.
Has anyone any suggestions?
Was pth tested when vitamin D was low?
parathyroid.com/low-vitamin...
No. Last PTH test before this one was 2017 & was 6.5.
Vit D was 21.9 18 months ago then rose to 65.7 after 5 months and massive loading dose. Then put on 800iu daily maintenance dose but now dropped back to 48.
Diagnosed years ago (pre Total Thyroidectomy which was initiated by large tumour, later found to be benign) as Osteopaenic.
TSH in normal range. T3 is technically normal but always at very bottom of range.
Get a lot of migraines & headaches, joint & muscle pain & tiredness (but do have stressful job).
Should I be chasing GP for further investigations?
Thank you for replying, SlowDragon
Ft3 needs to be at least 50-60% through range
Likely you are under medicated
How much levothyroxine are you currently taking
Do you always get same brand
For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if under medicated
Ask GP to test vitamin levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus vitamins including folate (private blood draw required)
medichecks.com/products/thy...
Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test
Thriva also offer just vitamin testing
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
monitormyhealth.org.uk/thyr...
Please add full results and ranges of recent tests
Hi there.
Currently on 125mcg of Levothyroxine. Was originally on 200mcg about 3 years ago but then TSH went haywire. My GO at the time was of the opinion that treating my symptoms was more important than adhering to test results. Unfortunately, he retired & new GP is a believer in TSH only. Even if I manage to persuade GP to request T4 & T3, the hospital just ignore this if TSH is in range!!
Saw an Endo about 18 months ago & he was pretty useless apart from telling me to go swimming (bizarre!) & get my Vit D checked.
Oh, and am always given différents brands of Levi by my dispensary. No arguments. Take what you’re given
Levo
First step is to get FULL thyroid and vitamin testing done, usually privately
Then go over GP head and see a RECOMMENDED endocrinologist
roughly where in the U.K. are you
Getting all four vitamins optimal is first step and fine tune levothyroxine dose
If ft3 remains low then likely to need small doses of T3 prescribed alongside levothyroxine
Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists...NHS and Private
tukadmin@thyroiduk.org
The aim of levothyroxine is to increase dose upwards until Ft4 is in top third of range and Ft3 at least half way through range (regardless of how low TSH is) ...important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
(That’s Ft3 at 58% minimum through range)
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor
please email Dionne at
tukadmin@thyroiduk.org
academic.oup.com/jcem/artic...
Interestingly, patients with a serum TSH below the reference range, but not suppressed (0.04–0.4 mU/liter), had no increased risk of cardiovascular disease, dysrhythmias, or fractures. It is unfortunate that we did not have access to serum free T4 concentrations in these patients to ascertain whether they were above or within the laboratory reference range. However, our data indicate that it may be safe for patients to be on a dose of T4 that results in a low serum TSH concentration, as long as it is not suppressed at less than 0.03 mU/liter. Many patients report that they prefer such T4 doses (9, 10). Figure 2 indicates that the best outcomes appear to be associated with having a TSH within the lower end of the reference range.
If you know which brand of levothyroxine you prefer get note added to all future prescriptions specifying which brand you need
Small independent pharmacies are often more helpful
Consult the websites of dr. Norman (parathyroid.com) and dr. Babak Larian, both experts in the field of parathyroids.
Hi littleGrey
Like you I had my bloods done for my thyroid which was removed in 2019 due to it being toxic.. High antibodies diagnosed with graves, my PTH.. Was 9.5. Calcium 271 I think anyway it was over. I saw an endo not in person (covid😠) over the phone. He requested a bone density scan just got the results I've got ostiopeania mainly in my back put on vitamin D, I had hyperparathyroidism in 2003 to which my surgery did a wait and see approach mainly wait till bloods return to normal which mine did after six weeks... OK... But I never had any follow up bloods like after 12 weeks to see if my PTH levels and calcium levels were being maintained by my body, upshot I requested my hospital and gp records this year I was horrified to see my calcium had been going up then back to normal for some years. The new endo noted this and I've had a genetic blood test which I'm still waiting on the results, then they found my cortisol was low so waiting on a test for that and a kidney test to... Cudos to the endo for getting me these tests but quite frankly if my gp had bothered to check my PTH and calcium he might have noticed it had gone up again I'm bemused as to why I was never called in to see the gp when my calcium went up😠 I think when you have raised PTH and calcium it should be monitored not just till they return to normal (and you don't need to have both calcium and PTH to be raised for a diagnosis of hyperparathyroidism, my vitamin D was also 29...but gp never bother because the paperwork always said normal no action.. Even though the 2 glands have no relation to each other, other than neighbours you can still feel ill with overactive PTH and raised calcium, in my experience theirs always a reason for the gland parathyroid or thyroid for going overactive. My new endo now says he has no need to take further PTH or calcium bloods well I beg to differ and if my gp won't comply I will try my best to save some money and get them done privately. Hope this helps you as a suffer of this condition twice....
Good luck♥️
Google 'Norman parathyroid centre', their website has so much information, I hope it helps.
I had two parathyroid tumours removed 3 years ago. My calcium was normal and my PTH was slightly raised. I really had to push and eventually got an ultrasound because I was told it was vitamin D, but that was high in range at the time. They found one then and the other during surgery.
Just to add I have osteopenia. Apparently even with normal calcium levels, you can still lose calcium from the bones with hyperparathyroidism. So I would make sure it’s thoroughly investigated.
Pth/ionized calcium with NO turniquet/correcyed calcium with albumin/active 1.25 OH D from the same blood draw, best to fast (PTH peaks early in ghe morning).
Scans: not reliable in 60% of tha cases, 4D seem to be the best.
With high PTH, Ca would be low (if not faulty parathyroid). What is the range for Ca?
Parathyroid.com is a Norman center page, have a look.
Thank you all for taking the time to reply.
It is much appreciated.
I clearly need to do some more research!
Hi LittleGrey,
I have low PTH at 1.3 (1.6 - 6.9). My calcium is now in the normal levels - was lower earlier in the year in a private test. The consultant said that some people have abnormal levels of hormone even though there is nothing wrong.... I am not sure I quite believe that but as my calcium is within normal limits they are not going to pursue. The consultant said I can be monitored at my GP practice but seeing is believing. I would like to know why my PTH is low but it doesn't look like I will ever find out. I have a theory it is to do with my adrenal glands but as I had a normal synacthen test last year they won't pursue that either. Best of luck trying to find out what is wrong xx
Hi Little Grey,
Maybe check out the Parathyroid uk group. Lots of info on there.
May I ask why your thyroidectomy was needed?
I had a thyroidectomy and bi lateral neck dissection which included removal of parathyroid glands. This was due to genetic condition called MEN2a. This causes Medullary cancer of the thyroid and can also affect parathyroids ( as it did in my case) and/ or adrenal glands.
In any case being hyperparathyroid is a serious condition so would suggest you contact your endocrinologist for more investigations.
Good luck.
Both Thyroid glands were removed because of a very large tumour on one side.
The consultant said that they were unable to tell if it was cancerous or not until after removal (??) despite having already done 2 biopsies. Fortunately, it ended up being benign. Advised to have TT as, if tumour had proved cancerous, consultant said that they would probably have to go back & remove the other side.
It is possible that either your parathyroid glands suffered damage during your surgery, and/or you could be experiencing secondary hyperparathyroidism. Your GP should make an endo referral to sort this out.
Thank you
Sounds like you also need to get your thyroid levels optimal
Many people after TT need the addition of small dose of T3 prescribed alongside levothyroxine
Come back with new post once you get full thyroid and vitamin results
Hi LittleGrey: I am in the U.S. and we measure bloods differently so I am not familiar with those numbers. But I had hyperparathyroidism for 6 to 10 years according to the lump my surgeon removed from one of my glands in Sept. of 2017. I found him and did my own homework by going to his encyclopedic site parathyroid.com They also have an app you can down load and track your Calcium, Parathyroid Levels, and Vitamin D and it gives you a preliminary assessment of where you are. I had a useless endocrinologist tell me, "Well let's just wait and watch it." By then I had learned from parathyroid.com that if an endocrinologist tells you that, get up and walk out. Because if you have hyperparathyroidism, you need to get that sucker removed because it is sucking the calcium out of your bones and will/could kill you as it damages other organs as well. I sent my records to the group, got a call from a doctor, and set up an appointment to go to Tampa, Florida to get it removed. In one day, I was pain free! This is common. I was not recovering from the debilitating fatigue because I learned 6 months later that I had sleep apnea and once I started treating that with CPAP therapy, I feel like I'm 35 again energy wise and I'm 76! So long story short: educate yourself on the site. It is rich with information. And download the app and use it. Also he speaks about the appropriate Calcium ranges according to our our age. In the U.S. the labs don't have different ranges according to age which they should. I learned that once we are over 40, our calcium should not be over 10 mg/dl. It's fine to be that when we are younger. I hope the site can help you. Best to you!
Hi LittleGrey,
Just wondering if you have checked out the Hyperparathyroid Action For Change website? I would really advise joining their Facebook group as it's a great community, with brilliant people who are pretty expert with their advice?
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