Me again.... Sorry I'm being a pain but I was at A&E again this week second time in the last 3 months, symptoms fast heart beat 133 resting first time second time this week resting heart beat 147..muscle spasms /shaking, very bad headache , weeing constantly, very thirsty, this is the second time I've been told by A&E docs I'm over medicated.... T3 done March 5.9..t4..2...TSH...0.05......on T3 only.... I didn't do well on T4 meds only.. So endo through months of blood work put me on T3.... Been OK on it for about 11 months, the endo then said I'm not doing well on T3 wanted me off it and bk on T4... Then he said I should try T4, T3 combo, I have held out on this because I feel I'm doing OK on T3 only.... The endo has pointed out my T4 at( 2)...ranges 11.00....22.00 and my TSH being 0.05..ranges..0.30...4.50...he has said I'm putting my health at risk with these levels 🤔... Would a low T4 and a TSH at these levels cause me to be very ill.. 🤔🤔
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If someone takes T3 alone, their T4 will be low as they're not swallowing levothyroxine.
Neither are they converting levo (T4) into T3 because they're taking T3 only.
The best way to judge your dose is by 'how are you feeling'? If well that's your optimum dose - if not a small adjustment up or down might get you to your aim, i.e. feel well and symptom-free.
If you feel well and symptom free refuse as I doubt the Endo is really up-to-date as all they're aware of is levothyroxine (T4) and T3 has now become very, very expensive..
I've been taking T3 for years now. I am well and symptom-free. Once I didn't feel so good and symptomtic but it was due to a change that was made in the T3.
p.s. If having a blood test, always make the very earliest appointment and don't take T3 before it but take it after. Always take your T3 with one full glass of water as we don't want it to stick in our throat.
Tell endocrinologist that NDT was the very first thyroid hormone replacement and it contains all of the hormones a healthy gland would have and has been prescribed since 1892 (until they removed it some months ago). No blood tests at all then, and since 1892 hypo patients did NOT die as they did before NDT was introduced and it has saved lives since 1892 - unfortunately now withdrawn by those you'd expect to be 'experts' for helping people who have no dysfunctional thyroid glands, but leaving patients distraught and shocked.
This T3 is driving me even more crazy, I'm not well enough to deal with idiot A&E doctors at the moment, first I've been on T3 (lactose free teva for 11 months I started lower down on 10mg..i know that's low but I wanted my body to get use to it... I started increasing by 5mg every 6 wks after my thyroid blood draw, which showed I needed an increase eventually getting to 30mg my T3 was 5.9....t4 2...TSH..0.05) I felt OK was bk in a sleep routine, went out more, saw friends more, thought I've cracked it, 👍 then last march I started drinking way more than I normally do and I was peeing loads especially through night which knocked my sleep pattern out😠.. I also noticed a very bad headache every morning lasting all day, needed painkillers to help with it also bad bone pain, I was checking through my thyroid blood work when I noticed a calcium level of 2.61...over range, then I went bk further to another month and found one at 2.67....now I was thinking when was the last time I was like this.. It was bk in 2004 when I had the same symptoms, after 7wks of being bedridden weeing, server thirst ect doc took bloods and said I had early onset of primary hyperparathyroidism 🤷♀️... So I pointed out the over range calcium to my gp... He did the 🙄... But did send them to an endo, I had 2 parathyroid hormone blood tests both were well over range with a over range calcium, endo wrote I think you probably have primary hyperparathyroidism 🤷♀️... Unfortunately with covid I could not see the endo they did the scans, bone scan showed ostiopeania in spine, gal stones, passed loads of kidney stones, just passed on about 9wk ago calcification in joints with calcific tendinitis in knees /ankles/shoulder and both wrists, all indicative of untreated primary hyperparathyroidism, the endocrinologist got a normal blood bk which is not normal because the calcium was 2.68....and has discharge me... So I really think these symptoms have nothing to do with over medication of T3 shaws...... I never peed constantly or had server thirst with hyperthyroidism (graves).. But both are symptoms of hyperparathyroidism, sorry for the long reply but this is unbelievable how they are missing this and bouncing bk to the T3 meds... 😠
Hi shaws👍I hear you on that.... I looked bk in my records ( requested them Nov last year) I noticed 2 suppressed TSH and 2 way out of range TSH in 2017/18..This was when I was telling my gp my symptoms were related to my thyroid I begged him to do thyroid bloods he did.. Only I found out by my records he only did TSH and they were off... Would that not have told him my thyroid was failing then? And going bk to 2011 I noticed a endo who I never saw sent a report to my gp after he sent bloods to her she said I've suffered with 2 episodes of thyroiditis ( a swelling of the thyroid) When!!! No one told me!! Doc said it was the menupause, well shaws that was a funny menupause because I lost my thyroid, 🤦♀️
Isn't it ridiculous that those we expect to be more knowledgeable than us, the patients, find that - even eventually - know more than those we've helped to be trained and qualified. To be honest I had never heard the word hypothyroid or thyroid but I would expect GPs and other doctors to be aware but were not.
Hi shaws 💗That's true they unfortunately are not.. I've joined the parathyroid Web site, a gentleman on there received a letter from his endo which read, your parathyroid hormones are high as is your calcium we will treat this as primary hyperparathiyroidism,) then at the bottom of the page it says "as your parathyroid hormones are in range and your urine calcium was only slightly out of range we will cover with an appointment next year" you can't make it up shaws.. So in the mean time like me this gentleman has to suffer...my endo who discharged me from her clinic did write to my doctor saying refer her to another endo of her choice that letter is dated 30th June and nothing as Been done.. Been on today AGAIN and AGAIN we only have a locum on and they have no access to files 🤦♀️.. So I'm rining again tomorrow, its such a shame its come to this the patient running about after a doctor and being like a uni student looking up on thyroid /parathyroid illness because the lazy doc can't be bothered 😠😠😠
You're right and I am really sorry you (and others) have to - in desperation - search the internet hoping we can come across some helpful advice and I am well due to finding Thyroiduk before Healthunlocked was introduced that was set up by Lyn Mynott due to her own experience.
We are very fortunate on this forum that there are many who are very knowldgeable about supplements/doses etc that helps others who are not improving.
It's about time we should be able to source over-the-counter thyroid hormones in the UK. That would also save the NHS and also patients could recover their health and wellbeing. They have to be at an affordable cost.
Many of our volunteers have so much knowledge that their help/advice is invaluable for many who can then begin to recover. The only setback is that we cannot purchase 'over-the-counter' thyroid hormones and in the UK they are too expensive.
Why are thyroid hormones so expensive in UK whilst in some other countries they are a reasonable price?
I hope your health will improve soon as many are floundering and if they haven't access to the internet their friends/family may be puzzled because the person is getting 'medication' from the GPs.
Since all this has happened to me.. (graves) then full thyroidectomy now parathyroid glands are over active,
I've found GPS and specialists are way to fixated on ranges.. Like our, T3 or T3, TSH, some will be well in a certain range.. But some will not, and they are the ones who struggle to get any kind of diagnosis, like me in A&E on Monday the doc gleefully ssis my calcium was in range at 2.59...the ranges in the UK are 2.10...2.60...eventho I was presenting with awful symptoms and he nined so saying something was definitely going one with me he still insisted the calcium was OK... My base line calcium is around 2.35..i told him this, so any raise to 2.59 is not good for me.... I said so in effect what Yr saying is my calcium Must go over 2.60 for me to have symptoms 🙄 that's a load of crap... This is what we as patients are up against, the stupidity of nhs ref ranges.. They need overhauled, and yes why is thyroid meds so expensive in this country shaws? Who's profiting from it being so expensive?.. Its all wrong.. You'd almost think our nhs service don't want us to be well again.. Makes no sence.. 😠😠😠
Hi there, I had a partial on my thyroid and years later the other half stopped producing hormone. From personal experience I need both T4 and T3 to normalize my heart rate and blood sugars. How much T3 were you on when taken to A&E? When you were on Levothyroxine alone what was your highest T4 and where was your T3 at that point as well as TSH? Sorry, couldn't find that info on your previous posts.
Hi jrbarnes ❤️Sorry for the late reply, not very good been in bed most days feel awful.. I'm on 25mg T3 spilt in to 10mg 8am..10mg..2pm..5mg 8pm...i was on 30mg on my first visit to A&E with a resting heart beat of 133 my gp sent me over, the A&E doc said it was thyroid toxicity, to much T3.. So I dropped it by 5mg..making 25mg but nothing as changed in my symptoms, I've noted my calcium has gone up from 2.35 in March then 2.53 June 15) ...a&e mon 2.59....I was on T4 175mg the day after my thyroidectomy, instructions from surgeon take as instructed I did took the whole 175mg...nothing really happened until around 2 weeks when I noticed my tremors, sweating, jittery feeling were bk.. Saw the surgeon who instructed me to go to 125mg I did still hyper one month later sill feeling awful hyper exhausted, sweating, tremor, he knocked me down to 100mg this went on for another month until I was on 50mg still hyper my bloods never showed hypo.. Eventually the endo saw the bloods because my surgeon was scratching his head, she just said I was not doing well on T4 because of absorbency issues🤷♀️ I have colitis, she put me on T3, I started low down on 10mg and built up to 30mg..i was doing great, bk to seeing mates, housework, ect,.. Then in march /April 2020 I noticed I was weeing more(never peed a lot when I had hyperthyroidism) then I noticed I was drinking loads craving it couldn't get enough, I'm still the same I also have bad joint pains, stomach /bowel pain to.. Then looking at my thyroid bloods I noticed 2 over range calcium, showed the gp.. He sent them to a endo they did 2 parathyroid hormone bloods both over range, endo said I probably have primary hyperparathyroidism 🤷♀️ and I recognised the symptoms as I'd been diagnosed in 2004 with early onset of primary hyperparathyroidism, just like now they left me with a wait and see aproach, worst thing they can do as if it's left untreated it can lead to, kidney stones,( I've been in hospital twice passing stones, passed many at home) gal stones, I've just been diagnosed with them, ostiopeania just diagnosed with this to, calcification in joints, diagnosed with this to.... I just spoke to the a&e nurse about my bloods they took on Monday they did a full thyroid pannle she said everything is in range, but I knew that as I'd recently had them done, my symptoms are related to my calcium going up, their must be a swelling in a gland or glands playing up , very similar to thyroiditis when the thyroid swells,
Sorry you're feeling so unwell. I've had quite a tough week as well since I've had to lower my Levo a little and still taking T3. I lack the motivation or energy to get up and do anything and bed bound most of the day. A lot of your symptoms sounds similar to mine when I tried to go T3 only. I realized once the rest of my thyroid stopped producing hormone that Levo alone was no longer going to work on me but also found through this journey to get better that levo has a place in my therapy. With those symptoms you might want to give that T4/T3 combo a try.
Hi jrbarnes ❤️T4 didn't work for me, but my symptoms are calcium related nothing to do with my thyroid meds, my thyroid bloods are in range, I didn't wee constantly or have server thirst with my T3 meds been on them for 11 months think I would have noticed if they made me urinate 7/8 times a night not to mention threw the day.. And I'm drinking like I'm in a desert, these are symptoms of hyperparathyroidism, I've had over range calcium and over range parathyroid hormones, nothing to do with my thyroid meds.. The blood tests proved that as the nurse said they are all in range, have you ever checked Yr calcium and parathyroid? Most if not all endos don't know the first thing about the illness, it took my gp/, endo 12 months to diagnose me with an overactive thyroid, so I know it's not my meds.. If you are bedridden while taking Yr thyroid meds you might look in to parathyroid illness..feeling very fatigued, pain in joints, just feeling generally unwell is a big sign for hyperparathiyroidism, I was doing so well on my T3 meds.. It was the over range calciums and parathyroid hormones that's making me ill.. 😭
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