Latest thyroid bloods: Hi everyone ❤️ So I've... - Thyroid UK

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Latest thyroid bloods

birkie profile image

Hi everyone ❤️

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... 🤦‍♀️🤦‍♀️

29 Replies

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.

birkie profile image
birkie in reply to Jenny583

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.. 🤷‍♀️🤷‍♀️

Jenny583 profile image
Jenny583 in reply to birkie

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!

I have no thyroid. I’ve made the point on here today that being without a thyroid is not hypothyroidism per se. Sadly, I’ve confused some people.

Look at it like this: can you have tonsillitis when you’ve had your tonsils out? No.

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?

They treat you with anything that sounds thyroid - ish whether it helps or not. They can’t have you dying on them

The latter

😱

MorecambeBay profile image
MorecambeBay in reply to birkie

Birkie. Ask for a copy of your hospital notes.

birkie profile image
birkie in reply to MorecambeBay

Hi❤️

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 👍

What are the ranges Birkie?

birkie profile image
birkie in reply to MorecambeBay

Hi❤️ thanks for the reply 👍My last 2 thyroid results are

Aug 23rd 2021

TSH.. 15.12...ranges.. 0.30..4.50

T3...6.6...range.. 3.10..6.80

No T4

Dec 20th 2021

TSH..0.05

T3..6.4

No T4

Thank you 👍

MorecambeBay profile image
MorecambeBay in reply to birkie

It’s crazy. I’m going to start fiddling the results so I can keep the 40 mcg. Problem with that is if you go to get a routine blood test and they catch you out by doing thyroid tests, you can end up with levels that are so high they’ll admit you.

Stay well birkie.

How Inwish you were here yesterday birkie when we had a lively debate about T3 and blood results.

I stay on 40 mcg purely because any more takes my FT3 ‘over the range’ (although there isn’t a range for T3 only) and Endo has a hissy fit. I’m ok on 40 mcg - better than I would be if they took it off me.

birkie profile image
birkie in reply to MorecambeBay

Hi ❤️

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 🤦‍♀️

MorecambeBay profile image
MorecambeBay in reply to birkie

Put your big girl’s pants on and give her a good talking to.

Are you on 40 mcg of T3, & are you prescribed T4?

No FT4. Just 40 mcg T3

OK, I see now that you had thyroid cancer, so that makes sense.

birkie profile image
birkie in reply to Jenny583

Hi jenny583❤️

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 🤦‍♀️

Jenny583 profile image
Jenny583 in reply to birkie

I hope you sued for leaving you at deaths door!

Jenny583 profile image
Jenny583 in reply to birkie

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!

birkie profile image
birkie in reply to Jenny583

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 🤷‍♀️

Jenny583 profile image
Jenny583 in reply to birkie

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.

birkie profile image
birkie in reply to Jenny583

Hi❤️Didn't get on with T4 endo after looking at blood results said I was either not converting or not absorbing so put me on T3 only no T4.. 🤷‍♀️

MorecambeBay profile image
MorecambeBay in reply to birkie

Same scenario as me

Jenny583 profile image
Jenny583 in reply to birkie

Yes, I saw that. So basically they have not taken that into account then, & so they are probably worshippers of the TSH religion...🧚

birkie profile image
birkie in reply to Jenny583

Hi ❤️

Yes doc was fix on TSH nothing else.. 🤦‍♀️

Jenny583 profile image
Jenny583 in reply to birkie

Many patients don't convert that 'one' of 4 hormones. You would think they would know that...

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