T3 only what should TSH be: Hi everyone ❤️ Just a... - Thyroid UK

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T3 only what should TSH be

birkie profile image
14 Replies

Hi everyone ❤️

Just a quick question on T3 at 35mg split through the day 10mg 8am, 10mg 1pm 10mg 8pm,,ive recently changed my morning T3 from 7am to 8am was to much getting uo fot that time also I was going to add another 5mg making 40mg in all but have left it as is, as I'm not feeling to good with hyperparathyroidism symptoms 😞.. Anyway my TSH was 00.5....range... 0.30...4.50..mU/L...T3..(5.9..range 3.10...5.80..pmol/L....T4...2..range 11.00... 22.00 pmol/L) i was taken to hospital because my heart beat was 133 resting, both my gp and the A&E doctor said it was due to my TSH level, obviously it's part of hyperparathyroidism as it can also give a raised heart beat, is my TSH level OK.. At 00.5🤷‍♀️ I'm seeing an endocrinologist in June I don't want them to jump on this TSH bandwagon instead of the hyperparathyroidism 😞

Many thanks ❤️❤️❤️

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14 Replies
Star13 profile image
Star13

I’ve had a 0.005 TSH for years! And I’m sure they will jump on it. When you are taking T3 as your primary source of medication it will suppress TSH . Has your T4 always been that low or has it dropped since you started T3? What about your Vit D, B12, Ferritin and Folate?

I get spasms of fast heart rates when my meds are too low. I have combination T3/4.

What makes you think this is to do with parathyroidism have you been diagnosed with that?

birkie profile image
birkie in reply to Star13

Hi star13Yes my endo wrote to me and my doctor saying I probably had primary hyperparathiyroidism after 2 elevated calcium and 2 elevated PTH last year in June/aug....i have been diagnosed with ostiopein in spine/knees/ankles have passed kidney stones one in 2019 after thyroidectomy my calcium was high then but they did nothing, got gal stones now, it makes you jittery, makes your heart beat fast, you have fatigue total exhaustion... I've not been right since thyroidectomy, still have bad symptoms which I've found out are not related to my meds... I was diagnosed in 2004 with primary hyperparathiyroidism but after one normal test I was left, moved GPS then got diagnosed with ME/fibro/cfs.. 🤷‍♀️

shaws profile image
shawsAdministrator

I take one daily dose of T3 with a full glass of water when I get up and wait an hour before breakfast. Dr John Lowe was an expert in the use of T3 and he took his in the middle of the night when he awoke so that nothing interfered with the uptake.

Some of these links might be helpful:-

healthunlocked.com/thyroidu...

birkie profile image
birkie in reply to shaws

Hi.. Shaws❤️I trued to take my T3 all in one go but it gave me bad symptoms, so I just take it split.... My symptoms for primary hyperparathiyroidism started may last year, but before then I was doing OK on my T3 splitting it... 👍

shaws profile image
shawsAdministrator in reply to birkie

I am sorry you have Hyperparathyroidism and that may be the reason why you feel your dose is too much. I am also not medically qualified.

Hyperparathyroidism is where the parathyroid glands, which are in the neck near the thyroid gland, produce too much parathyroid hormone. This causes blood calcium levels to rise (hypercalcaemia). Left untreated, high levels of calcium in the blood can lead to a range of problems.is where the parathyroid glands, which are in the neck near the thyroid gland, produce too much parathyroid hormone.

This causes blood calcium levels to rise (hypercalcaemia). Left untreated, high levels of calcium in the blood can lead to a range of problems.

Do you think your dose may have been a little on the high side? Also bear in mind I'm not medically qualified.

The only time I had bad symptoms was when on levo alone and they were dreadful - especially during the night and the cardiologist was thinking of putting an implant in my heart to try to find out what was 'going on'.

Fotunately some T3 was prescribed to a reduced T4 and I improved and I then stopped T4 and onto T3 only. When taking T3 I started low and slowly increased then decreased till I had no symptoms. I have no symptoms now and feel well.

I have actually been able to lower my dose, by taking into consideration my symptoms.

I am aware many also split their doses but Dr John Lowe took 150mcg once daily with one full glass of water - which was in the middle of the night when he awoke so that nothing interfered with its uptake.

He stated that the one dose of T3 saturated all of the 'receptor cells' and then its work began by sending out 'waves' for between one to three days. I took one dose, did not take any for day 2 and day 3 and I felt fine. I took my normal dose daily dose after that.

If I felt 'hyper' I'd reduce my dose very slightly as I know the experience of a fast heartbeat that wakened me in the middle of the night and had to wrap ice-cold towels around my neck to reduce palps that can cause us to be anxious.

I used to take a higher dose but now take 25mcg T3 daily with one full glass of water when I awake a.m. and wait an hour before I eat.

I hope your symptoms will resolve quickly. I used to take 50 mcg of T3, now it is 25mcg.

birkie profile image
birkie in reply to shaws

Hi shaws❤️

I increased my T3 from 10mg to 35mg,,could not tolerate T4 it made me feel rotten, my levels of thyroid hormone last year was a TSH of 1.24,,i still felt bad, but as I said the symptoms are from the parathyroid glands, elevated calcium can cause palpitations, I had the same in 2004 when I was first diagnosed with primary hyperparathyroidism, I have not increased my T3 to 40mg like I was going to.. I have however decrease the T3 by 5mg making it 30mg, no change I'm still having the same heart symptoms, jittery butterfly stomach, weeing loads, very thirsty, insomnia sweating, I have one of those ice box fans you put ice in each compartment and it blows cold air out... Love it... All my windows are open especially my bedroom even in winter I have a very thin sheet on the bed, I'm never cold always boiling hot, thought some of these symptoms would have gone after thyroidectomy 🤷‍♀️

shaws profile image
shawsAdministrator in reply to birkie

To have no thyroid gland at all makes things very difficult for the person who is trying to feel better.

The action of 25mcg of T3, I have read, is about 100mcg of levo.

I did take a higher dose but going by 'how I feel' I've now reduced dose of T3 to 25mcg daily.

You definitely need the advice of an 'expert' and try to find out by putting up a new post asking if a member has found an Endo who is knowledgeable about hyperparathyroidism and how to treat a patient and who may be able to assist you. Also ask TUK. I hope there's someone just like we had Dr Skinner and Dr Peatfield - they were trusted as they were taught in the 'old school' of treating a patient. Of course, you'd have to pay for a private consulation and some people just cannot afford that at all.

You have my sympathy and maybe someone on this forum has the name of a 'sympathetic' Endo. If they still prescribed NDT, maybe a trial of that might have helped but they have withdrawn this too, leaving us with few options.

cazmania7 profile image
cazmania7 in reply to shaws

Can I ask what your T4 looks like on T3 alone please? I’m considering trying T3 only at some point

birkie profile image
birkie in reply to cazmania7

Hi cazmania7💗

My T4 on last bloods was 2...range 11.00... 22.00...also T3 meds will bring the TSH down to ,my last one on same draw as T4 of 2.. was 0.05..range 0.30...4.50..my T3 was 5.9...ranges.. 3.10...6.80....what are you on at the moment ❤️

cazmania7 profile image
cazmania7 in reply to birkie

Your T4 was 2?? I’m on levothyroxcine only but raising this then will try adding T3 again. Failing that it considering trying T3 only you see...

birkie profile image
birkie in reply to cazmania7

Hi cazmania7💗

I'm like shaws I could not get on with T4.. Absorption issue.. Tried for about 8 months it was hell.. Finally got on T3 and my bloods are looking OK... But I'm not... Sure its hyperparathiyroidism, waiting to get my gp to send me to a surgeon, I've had High calcium and high PTH.. I've had worse thyroid blood results and my calcium was OK, although no pth was done, calcium went over last year, 🤷‍♀️ then endo decided to do 2 pth... But no calcium 🙄 that's not how you diagnose hyperparathiyroidism you must have both calcium and pth done together, my vit D was 29 last year, 🤷‍♀️

cazmania7 profile image
cazmania7 in reply to birkie

Oh nitemare bud. I really don’t have it bad compared to some! It’s never ending!

shaws profile image
shawsAdministrator in reply to cazmania7

I don't have T4 tested as my body doesn't produce it and I take T3 only.

I have recently been diagnosed as having a rare polyglandular disease.

healthunlocked.com/thyroidu...

cazmania7 profile image
cazmania7 in reply to shaws

How interesting. Ok thanks for your reply buddy!

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