Just posted but feel I need to clarify some things, on last post I forgot to mention that the A&E doctor said I should probably drop My t3 medication by 5mg to see if that helps with the symptoms, palpitations, fast heartbeat, sweating, tremor, he discounted the other symptoms I had of utterly thirsty all the time and weeing constantly, very dry mouth /lips weakness in lower limbs, that's how I now take 25mg t3(split 3).. But even at this amount for 5 months my T3 is in good range, it only showed over range when my gp sprung a thyroid blood test on me in June 2021..t3 at 11.3...TSH..0.04..no T4... (took my T3 medication)
April 2021 thyroid blood test...T3..5.9...TSH...0.05..T4..2) did the test.. No T3 meds 12 hours, before, only water, early appointment,
Next was Aug 2021 which should have only been for PTH, calcium, vitamin D.. Again the gp sneaked a full thyroid pannle in
T3.....6.6....TSH...(15.12) .....T4...2.8)...cant figure out why my TSH as gone so high all others have been.. 0.04,..0.1.... 0.16..T3 is in good range top end.. Should I be worried about the TSH.. 😕😕
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Hi slowdragon ❤️Cortisol test was OK within range, I always have my last T3 dose at 8pm..then get 8.30/9am blood draw, my adrenals were OK to.. What's DHEA? Apart from the symptoms of utter thirst and weeing constantly I'm now OK.... But Ive started in this last month to drink 3 liters of water per day to flush out excess calcium, before I did this my symptoms were unbearable, palpitations, sweating, bad headaches, tremor, now I've upped the water they have diminished greatly.. But I needed 2 travel to Hexham general (endo app on September 24th and I couldn't keep the water intake up as much 4 trains there and bk.. I noticed in 24 hour the symptoms were creaping bk.. I immediately got bk home and started bk on my water intake then the symptoms went.. Its been that way ever since, as long as I keep the water intake up those other symptoms keep at bay.. But I'm still very thirsty especially through night my lips are cracked and dry as is my mouth, and I'm seeing for England, but they are also symptoms of primary hyperparathiyroidism, for which I was diagnosed last year then endo said its now secondary 🤦♀️ sure his got that diagnosis wrong ad my calcium is at the top end not low 🤷♀️
"I always have my last T3 dose at 8pm..then get 8.30/9am blood draw," .... yes, but unless i'm mistaken you said this blood test wasn't done like that .. it was unexpected , late afternoon , after you had 10mcg T3 at 8am and another 10mcg T3 at 2pm
EDIT , i realised later that the high TSH was due to not taking any T3 at all for at least 5 days around the 15th August and testing on 23rd august
High Parathyroid Hormone Levels in Patients with Intestinal Absorption Problems, Such as Gastric Bypass Surgery, Celiac Sprue, and Crohn's Disease.
There is a growing group of patients who have dramatic life-long problems absorbing calcium in their diet. These patients are illustrated on our graph in the purple area. These patients have difficulty absorbing calcium from their intestines, and end up with chronically low blood calcium levels as a result. Since they don't (can't) absorb calcium from their diet, their NORMAL parathyroid glands will do what they are supposed to do in order to try to maintain a proper calcium level in the blood. There is only one thing these normal parathyroid glands can do... all four glands enlarge and produce lots of PTH which removes calcium from the bones--it's the only place to get the calcium. The blood calcium will usually be in the low-normal range between 8.2 and 9.2 mg/dl, but can be as low as 7.0. Thus these patients can develop very significant osteoporosis, high PTH levels, and high alkaline-phosphatase (shows increased bone destruction). These patients have developed a total-body calcium deficit due to a longstanding inability to absorb calcium through their intestines. This is a form of secondary hyperparathyroidism, and should be treated with calcium and Vitamin D supplementation.
As you are lactose intolerant…..perhaps this is your issue
Hi slowdragon ❤️ Been tested for diabetes was negative, that was one of the blood tests I had along with the test for primary hyperparathiyroidism, they have to eliminate it before they look for primary /secondary hyperparathiyroidism, and I got the diagnosis of primary last year, but they have messed me about due to covid not seen a endo face to face till September this year, where he just said I think it's secondary up your vit D... My calcium is in the very upper range and as been over range.. My calcium in Aug this year was.. 2.73..adjusted to. 2.59...you wouldn't get a calcium of that level with secondary it usually presents with a low calcium, I need to pop of an e mail to him saying I don't have secondary as my calcium is to high to diagnose it.. 🤦♀️And my PTH 2 over range one top end prove it.. 👍
I would say no, you shouldn't be worried about the high TSH. It looks like assay interferrence to me. It happens. It's illogical, so ignore it. It probably won't happen again. If it does, worry about it then.
I don't think it would be wise to drop T3 dose at the moment . because we don't know why your TSH has suddenly gone that high . TSH that high would usually indicate you need more thyroid hormone not less.
It's possible the TSH is incorrect (eg. assay interference), but if it IS correct then lowering dose wouldn't seem sensible.
Also this fT3 was done late afternoon when you'd taken 10mcg T3 at 2pm , and 10mcg T3 at 8am .... so it's unlikely your fT3 is too high.
Also see my reply to you other post today, re. fT3 being unexpectedly lower than previous time when tested after dose taken. healthunlocked.com/thyroidu...
Hi tattybogle ❤️Yes it's strange All my t3s are OK and my TSH as been OK.. It only changes when the gp springs a full thyroid pannle on me.. When I've taken my meds.. As I say I've been having blood tests for PTH, calcium, vitamin D, I was diagnosed with primary hyperparathiyroidism last year but gp sneaked a thyroid blood test on both and my TSH was over range.. But T3 was OK.. Not over range.. I had only taken my 8am 10mg and 2pm 10mg..not my 8pm... Blood test was late afternoon I'd also drank and eaten, but still T3 was OK... Topend but that's where we need it.. 🤷♀️
unexpected blood tests do NOT account for your high TSH.
TSH takes much longer than 1 day to move that much, hence time of last dose does not really affect TSH results..
Possible reasons for a high TSH could be :
a) a mistake (eg .assay interference) ,
b) it's correct, and you need more thyroid hormone,
c) missed doses of thyroid hormone for several days shortly before test, **EDIT ~ T3 DOSES WERE MISSED COMPLETELY FOR AT LEAST 5 DAYS AROUND 15th AUG, and test was done on 23rd AUG ... SO THAT IS THE PROBABLE REASON FOR HIGH TSH IN THIS INSTANCE**
d) thyroid hormone not as strong as should be (eg. fake)
c) pituitary /hypothalamus problem (making too much TSH for some other reason not related to thyroid hormone level).. unlikely as i think your TSH is normally 'as expected' for dose
if you remember ,when you previously had an unexpected test too close to T3 dose , your TSH wasn't affected .. it was 0.04
please clarify .. "gp sneaked a thyroid blood test on both and my TSH was over range.. But T3 was OK.. Not over range.. I had only taken my 8am 10mg and 2pm 10mg..not my 8pm... Blood test was late afternoon I'd also drank and eaten, but still T3 was OK... Topend but that's where we need it.. 🤷♀️ "
... are you referring to this latest blood test , or another one ?
The fact that you hadn't taken the 5mcg from 8pm is not really the point .. if test taken late afternoon you would still expect fT3 to be quite high due to the 10mcg you took at 2pm .. previously when you took last dose too close it was 11ish ... so it's odd that it's not over range this time too.
So given that your last dose was only a couple of hours before test , your fT3 is not really 'at top end' it just looks that way due to last dose, if tested after 12 hrs it would have been lower.
NOTE "I was diagnosed with primary hyperparathiyroidism last year"
To avoid confusing people.. It seems Endo's can't decide what, if any, type of parathyroid issue you have.. and your new Endo has now called it 'secondary hyperparathyroidism' ..... and you are taking Vit D " I've just recently been diagnosed with ostiopeania in my spine and osteoporosis in both knees and ankles ... gp sent me for x Ray on knees showed osteoporosis in both and probably in ankles to, so that's why vitamin D was prescribed by endo... healthunlocked.com/thyroidu... DippyDame but it sounds like you are not taking the prescribed dose "vitamin D in sept was 29, he placed me on 800iu vitamin D .... so i changed the vitamin D to better you spray 100iu ... I sprayed ever other day .."
Your most recent Calcium and PTH are now back in range:
in April 2021 you wrote "I've received a letter from an endo in regards to my hyperparathiyroidism, she's ... saying my calcium is OK... Calcium in March 2021 was 2.68...ranges.. 2.10...2.60)..it went back to 2.35 in April 2021) had a blood test in june 2021 it's now 2.53..)
pth went from 4.4 in March 2021...range1.60..6.90..to..5.3..in June 2021).. Pth.. Was 8.1 in June 2020...then 9.5 in Aug 2020). " healthunlocked.com/thyroidu...
Hi Anthea55❤️Yep been tested for diabetes negative, primary hyperparathiyroidism also presents with utter thirst, and peeing aIot was diagnosed with it last year but with covid ect I didn't actually get to see an endo face to face just blood workup which showed over range calcium and pth.. Kidney scan which showed I'd passed stones, gal stone in gal bladder, ostiopein in spine and neck, soft tissue calcification in knees, ankles, wrists, and shoulder, calcified plaque in heart, and still I'm waiting for endo to do something for me other than giving me vitamin D.. 🤷♀️
When on T3 only lab results increasingly become less significant than signs and symptoms!So long as your FT3 is in range you are unlikely to be overmedicated.
Monitor your resting heart rate and temp.
TSH does fluctuate, I wouldn't be too concerned about a single episode.
Because I have a form of thyroid hormone resistance/ tissue hypothyroidism and I take a supraphysiological dose my TSH and FT4 have dropped off the scale and my FT3 is over range. I self medicate and this freaked out my GP but it's where I need my dose to be in order to function...she now accepts this. A recent heart scan showed a healthy heart and my bones are strong....despite the T3 scaremongering of medics! This link supports this...
On T3 only 25mcg is not a huge dose. Early on I reached 212.5mcg before I felt overmedicated, I now need 87.5mcg but occasionally need to tweak this dose.
Finding my therapeutic dose was a bit of a roller coaster, it takes time and patience.
Without ref ranges it's not clear where your numbers sit within the range but my guess would be that you are undermedicated.
I take my T3 in a single dose at bedtime, it keeps it away from food and drinks...though this may not suit everyone. I guess it depends on how our individual system reacts to the hormone.
I found the work of the late Dr John Lowe very helpful, he recommended a single dose
Overall I guess you need more T3, your symptoms suggest this! I would want to trial an extra 5mcg rather than dropping that amount as endo suggests.
There are no hard and fast rules to dosing with T3. Bottom line, we are all different and need the dose that makes us feel well, not one simply to tick a box on a computer screen!!
Hi Dippydame❤️I started on T3 late 2019. at 10mg I built up to 25mg split in to 3..i felt good in early 2020 not bad at all T3 was OK T4 low.. TSH was always low but that's to be expected being on T3 only.. Then at the end of May 2020 I started to feel very dehydrated wanted to drink way more especially through night then I started peeing loads, then the other symptoms kicked in, palpitations, sweating, slight tremor, headache, weakness in lower limbs.. I noticed on my blood printouts I had 2 over range calciums gp sent them to endo he did 2 pth which were over range also so endo said you probably have primary hyperparathiyroidism and I've been fighting this endo system ever since as now they say I have secondary,🤦♀️ secondary dose not present with a top end over range calcium or a top end over range PTH... 🤷♀️
Hi DippyDame❤️My vit D was 41..... Tested sep 24th 2021..but my calcium is top end 2.73 adjusted to.. 2.59..last one's 2.54,..2.44,..2.68..to high to Diagnose secondary you usually present with a low or deficient vitamin D and a low to below calcium and a over range Pth or in range PTH.. My resting calcium is between 2.34...2.35..👍
You have posted about vit D before. 41 is a slight improvement but we are advised that the desired serum level for vit D is 100 - 150nmol/L. You need to raise your level!
Have you supplemented according to the advice given here
Hi DippyDame❤️Endo diagnosed primary hyperparathiyroidism after I had an over range calcium and over range pth last year, the surgery failed to do vitamin D along with these 2 tests so he requested the vitamin D in sep that was 29 where he placed me on 800iu vitamin D the blue gel capsules but I was worse and my calcium went up to 2.68..i changed the vitamin D to better you spray 100iu as I have colitis and are lactose intolerant I sprayed ever other day as I know to much vitamin D can cause calcium to raise, my calcium is at the top end anyway, but phpt will lower vitamin D 👍
95% of all patients with primary hyperparathyroidism are on this graph... they have calcium levels between 10.2 and 11.4, and Vitamin D levels between 8.5 and 33. Thus, almost everybody with primary hyperparathyroidism (due to a parathyroid tumor in your neck) will have low vitamin D-25. You can tell the difference because the calcium level is 10.2 or higher.
If you are drinking 3 litres of water a day, your symptoms may be from low sodium. I have Addison’s/Adrenal Insufficiency and find it difficult holding on to sodium and these are some of the symptoms that I experience when my sodium goes low. Maybe try drinking electrolytes or reducing how much you are drinking each day. And I agree with Hedgeree, ask about Diabetes Insipidis.
Hi Barrister❤️Have checked diabetes and Addison /adrenal, sodium ok all negative, except for over range top of the range calcium and over range top of the range PTH.. Drinking the water helps flush out any excess calcium through the kidneys.. Its certainly keeping the bad symptoms at bay.. But still very thirsty and weeing loads but that's a symptom of primary hyperparathiyroidism 👍
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