So I've been on T3 medication for well over a year now I started on a very low dose of 10mg and have built up to 40mg..I've been on 40mg for about 9 months or so now.. I'd like to post my last 4 thyroid blood tests
April 7th 2021
TSH..(0.05).....T3...(5.9).....T4..(2)....on 34mg T3 medication
June 15th 2021
TSH..(0.04)....T3....(11..3)...no T4... Please note I was at the surgery for calcium, PTH, vitamin D.. Not thyroid so I'd taken my meds had food and drink and the appointment was late afternoon)
Aug 23rd 2021
TSH... (15.12).....T3...(6.6)...T4...(2.8).... Morning appointment no meds before draw.... 40mg T3 medication
Dec 20th 2021
TSH...(0.05)......T3....(6.4).....no T4.. Morning appointment no meds taken before draw.... 40mg T3 medication
I take my T3 medication regularly split 3 times (8am 20mg)...2pm 10mg) 8pm 10mg...total 40mg I wait one hour before eating or drinking anything take with full glass of water. On last results Dec 20th the gp wants me off T3 saying I'm way over medicated and it's very bad for my health, what is bothering me is the fluctuation in my TSH ... Aug 23rd TSH was 15.12.....then on Dec 20th its 0.05 I was on 40mg on each occasion, because of my ongoing symptoms : constantly on the toilet weeing, night and day, server thirst, server bone pain, shaking buzzing sensation throughout lower legs in bones, insomnia, server headaches, kidney pain, fast heartbeat slight tremor, total exhaustion sickly feeling, bad metalic taste in my mouth especially in the morning🤮.. The gp wants me off T3.. I'm under an endocrinologist at Hexham he is investigating primary hyperparathyroidism, in 2020 I had top range calcium and 2 over range parathyroid hormones.. A calcium of 2.68 in March 2021 but the bloods he did on sep 24th 2021 came back as normal, I'm trying to get this gp to understand that the symptoms of going to the toilet very frequently day and night and server thirst bad metalic tast in mouth(my eGFRcreat and creatinine are always out of rage one in Feb 2021 being (eGFRcreat.. (54) ...range.. 90.00..120.00).. Creatinine.. (99)...range... 49.00...90.00..gp is not concerned about these results!... These are not symptoms of over medication of T3... Can anyone shed any light on what's happening, could primary hyperparathyroidism have any affect on my thyroid results?? Im so ill and are trying to help my cousin with her thyroid journey to..I'm back to being bedridden again 🤦♀️ the gp is taking advice from an endocrinologist on my last blood tests for thyroid Dec 20th, I have an appointment tomorrow with this gp I really don't know how to approach her on all this... 🤦♀️🤦♀️
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birkie
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I am appalled at the way you are being (mis)treated birkie!
Are the doctors still advocating Calciferol? If so this raises calcium, which can contribute to your symptoms of primary hyperparathyroidism, (as calciferol (vitamin D) pulls in calcium), which as I'm sure you know is caused by to much calcium. Can you trust these doctors to treat symptoms of NO thyroid and as such no thyroid output, or for the symptoms of hyperparathyroidism? and do they know the difference?
It sounds to me like they don't realise that having no thyroid means no thyroid out put.
Hi jenny583❤️The endo put me on 3000iu vitamin D the one you mentioned but I couldn't stomach it so after advice from the parathyroid pals I got better you vitamin D spray with k2 3000iu I know to much vitamin D can raise calcium so I'm at a loss as to why the endo put me on it as 1,my normal calcium is around 2.34/5, my calcium has gone up steady since 2020 2.41,2.45.2.68,2.59 and so on.. I know if your calcium bounces around as mine is their is probably something up with one or more parathyroid glands because that's all para glands do regulate calcium in the body.. But because my calcium as only gone over twice one at 2.61 one at 2.68 2020/2021 the surgery arnt counting the other calciums from previous years.. 2.61,2.67,2.89,2.75,2.67..🤷♀️the gp and endo says 1 you can't have primary hyperparathiyroidism, 2 your calcium is not high enough,.. Now for the thyroid... I'm absolutely sure as many on here have stated many times GPS and some endos have no idea how to treat people with no thyroid, they talk to you like you have a thyroid 🤷♀️ as I said to the gp on Friday.. "I have no thiyroid" she said ho I know you had a partial removal in May 2019....i said "no I had a full thyroidectomy" she then said so your parathyroid glands were removed then... WHAT!!! er no just both lobes of the thyroid gland, she then again said that's not a full thyroidectomy 🤷♀️.. I know my paras were not removed as it says on my discharge form full thyroidectomy.🤷♀️ I see her tomorrow, I honestly have no faith in what she is going to say.. 🤷♀️🤷♀️
Hi birkie, I think you need to separate the hypothyroidism from your diagnosis of primary hypothyroidism! its clear from what you say that your lack of thyroid is due to the removal of your thyroid gland.
But the Exacerbation of your primary hypercalcaemia via the added D3/D2 is confusing the picture of your hypothyroidism - and vice versa.
D2/3 (vitami D) compounds the disease of primary hyperparathyroidism, as D2/3 makes calcium higher so that would make your disease symptoms worse!
The lack of T3/T4 would just confuse things even more & make you feel even more ill.
I get the impression that the Dr's don't want you to get well, & are maybe? deliberately clouding the issue by confusing your 2 conditions. Either that or they are complete numb sculls!
But are you treated to replace the missing hormones that were provided by your missing thyroid before it went missing? And do you have another condition ( like primary hypercalcemia) - that doctors confuse with the evils of ingestion of liothyronine which they believe to be the fount of all evil?
It's so annoying trying to talk to the gp she is not bothered about the T3 results Only the TSH and says that is the only result that matters, I went on to say but T3 is the main hormone TSH is just a signal, she wants to try to put me back on T4 for which I was very ill on, endo eventually said I was either not converting or not absorbing the T4.. I have colitis and are lactose intolerant, my T3 are teva lactose free.. I told this doc i didn't get on with T4, I said to her T4 goes in to the body then converts to T3 right, I was not converting, she said not necessarily WHAT!!! God help me tomorrow 🤦♀️
I have all my medical records 👍 I requested them Nov last year, wow they make interesting reading, I suffered with overactive symptoms from 2017 kept going to my gp he kept saying.. Nothing wrong with you..full thyroidectomy 2019..looking in my records I have paperwork going back to 2015 saying I had 2 short supressed TSH and endo diagnosed me with thyroiditis 🤷♀️ first I'm hearing of this... I'm taking it up with the practice manager soon, hopefully I've got the strength 👍
No I didn't have cancer, I had thyrotoxic thyroid gland, it was slowly poisoning me I was in hospital in thyroid crisis, my thyroid levels were T3... 39.5...T4 100 TSH undetectable 😭 surgeon had to put me on luggies iodine for 5 wk before op as I was so toxic he would operate with those levels 🤦♀️
Hi birkie, I was seeing that MorecambeBay had cancer, my apologies. I had thyroid crisis many years ago, you have my sympathies! worst thing there is. But now you are hypo, and hyperparathyroid, & Dr's are your biggest problem.
I've said it before, & I'll say it again: you should NOT be taking ANY form of vitamin D!
Hi❤️I totally agree with you, I have started to spray on alternative days, and I want to stop altogether, I am going to suggest just that tomorrow saying I want to see what happens to my calcium if I'm not taking vit D.. Also my vit D was 29 in sep 2020 that's why I was given the supplements, it went to 52 and is now 42 so even with the 3000iu my vit D is not going up much.. But I know that in primary hyperparathiyroidism the vit D is kept down 🤷♀️
Hi birkie, Yes I have read that the human body tries to reject vit D as vit D helps to absorb calcium. in someone without primary hyperparathyroidism the immune system does not like exogenous vit D or calcium, so it makes us sick to try to stop the stomach from absorbing it.
The trouble with sublingual vit D is that the body has no way of rejecting the vit D even though it knows that the vit D will pull in more calcium, because mouth sprays bypass the stomach. Parathyroid glands - when they are made awol by disease act a lot like thyrotoxicosis & just keep producing to much hormone, so just as Graves disease forces the thyroid gland to produce toxic amounts of T3/T4 - so the diseased parathyroid gland is forced to produce too much calcium.
Taking D3 in any form, ( when you have untreated hyper para) but especially via a mouth spray is akin to injecting T3 into a vein when you are in thyroid storm/crisis.
I put my faith in the immune system, it knows better than any medical adviser.
**added in June 2022 for clarification ~ this post says "what is bothering me is the fluctuation in my TSH ... Aug 23rd TSH was 15.12.....then on Dec 20th its 0.05 I was on 40mg on each occasion...,"
But the high TSH in 23rd august was probably due to having at least 5 days of taking no T3 at all around the 15th august .......... and at that time the dose being taken was 25mcg (not 40mcg as stated above ) ... self increases to 30mcg and then 40 mcg have happened since August , based on that incorrect TSH result , and were probably unnecessary as fT3 in august was 6.6 [3.1-6.8]
Regardless of all the thyroid bloods, why do i still have all the symptoms. Urinating constantly
Thirst
Headaches
Bone pain /vibration
Feeling sick
Actually vomiting
Sweating
Shaking
Fast heartbeat ect
I can't see on my results that my T3 went over TSH 0.05 the lowest, now hypo all symptoms remain, I honestly wish the weren't, I'd have loved the symptoms to have totally gone😢
hopefully clarifying some of these errors in your old posts re. what dose you were taking , for how long. and why you increased from 25mcg to 40 mcg T3 will make it easier for people to help you find the right answers going forward if you get your T3 prescription back .Without the correct details in the information you give here , then advice to you will not be correct.
There were several contradictions in your posts about what dose you were taking for each test .. i do understand it's very hard to keep track of lots of results when you are feeling lousy , so it's not a criticism ..
I've read through them and compared with what was written before ... worth doing because if the information on posts is wrong just makes it more difficult for you to ever get the right advice when you ask for help.
Thanks for looking through them🙏 I should have checked to see if the thyroid bloods were taken along with parathyroid, calcium, as I said the surgery just did them without telling me and when I saw the results I just posted them on here not realising they were taken with food/drink and late afternoon, my surgery did this a few times, as did the hospital at one point🤷♀️ gps and hospitals don't seem to understand the way to take thyroid bloods, the same with parathyroid bloods, I've had some done in gold top tubes when they should be done in EDTA purple top tubes, it's just a mess tattybogel 😔 I've got to add I did the 6 days off for obvious reasons, but even when I've been on thyroid medication for 7/8 weeks constantly some of my results look weird.. I honestly crossed my finger when I was told to decrease the t3 hoping all the symptoms would go, but they haven't 😔
My gut feeling after reading everything carefully from about 2020 onwards , is that you would have been better staying on about 25mcg T3 instead of increasing it to 30 or 40. You only ended up in A&E after you increased it from 25mcg. You lowered it for a while but then increased it back to 40 by yourself on the back of an inaccurate TSH test and now you've lost it all together.I think shaws is possibly of a similar opinion about trying 25mcg for longer looking at several of her comments to you over the last year about her dose of 25mcg T3 being sufficient.
Anyway that's 'water under the bridge' now unless they give it you back again.
I hope they do, but i think you will need to deal with the fact that they think you were overmedicated when you were taking 30 /35/40 , by being prepared to try around 20/ 25 for a long time .
If you ask me , they are convinced both your A&E attendances for tachycardia were directly related to you increasing the dose from the 20/25 ish they were happy enough to prescribe.. and under these circumstances it will take some persuading to get them to prescribe it again.
i also think they will not believe a lot of your blood results are accurate .. if i could figure out the reason for the high TSH of 15.12 was missed doses then so can they .
However you achieve it .. you do need to find away to keep your thyroid blood test conditions consistent going forward ,and your own records of dose changes more accurate, otherwise nobody will ever be able to see what's happening, and you will make wrong decisions yourself based on wrong results .. and you also need to accept that they WILL often be doing them when you didn't expect it.
When I see the endo I'm going to ask for thyroid meds with no lactose or mannitol and perhaps liquid form, crossing fingers I can get back on T3 🤞 although I'm not adverse to trying T4 in liquid form (no lactose or mannitol) my surgery are not to good with blood tests.. I changed the meds from T3 to T4.. Usually after a change in thyroid meds you do bloodwork around 7/8 weeks.. But my surgery said 3 months..🤷♀️
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