I,ll try and keep this short...So I went to see my Endo last November, still not feeling great, he said you can always take a bit if extra t3 when not feeling well..Foolishly I did!!!Got the shakes, stop taking it but the shakes carried on.Went to the Docs she sent me straight to A&E.They asked what medication I was taking.They took one lot of blood 2 hours later another blood test.A chest X Ray, ECG.
everything was normal.
Then they asked about the t3..Took a thyroid test, by this time it was 3.30pm.Then I had the NHS Endo come up to see me,he said I had no TSH levels and that I shouldn't be taking T3,he really laid into me,t3 causes this and that,blah, blah. I was in tears at the end.
I got a call from the Doctor 2 days later to say I had to put both my Thyroxine and T3 down.
I was on 12.5 of t3 and was told to put it down to 10
I have never felt so unwell.
Test results from last week..
TSH 0.011(0.27-4.2)
T3.5.0(3.1-6.8)
T4.17.1(12-22)
So should I put my t3 back up to 12.5?
Also I asked at my Docs if I could have an iron test,to get a call back from a doctor asking WHY.!!!!He also went on to say " we don't have to do these blood test for you, you know.Myhusband went round to the surgery that evening to make a complaint as I was in tears yet again (I,ve really become a cry baby of late)but all this doesn't help when your not feeling well.The doc was actually there when my husband went round there and called him in, they had a very lengthy chat about how I,ve been for some years now.He,s been very nice to me since, quite helpful.
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I have a similar problem of very very low TSH that causes great agitation with numerous medical practitioners, regardless of expertise, and my FT3 is rarely above 50%. Your drop in T3 has reduced your FT3 blood result by 10% from 61 to 51%; the drs.would be equally unhappy with your TSH results, so personally I’d go back to dosing where you feel better. As it is seems they never really found the cause of your shakes, out of curiosity how much extra T3 did you take?
Hi JudithdalstonI took an extra 2.5. I should of known better as I was on 15 previous for a long time then I started shaking and that's when I reduced it to 12 .5.and i was fine on that dose.
But seeing as my Endo suggested doing that, I thought I would be alright.
I have had odd times when felt shakey over the last 6+ years when taking T3…I take it in a split dose 3x a day, and if i have been busy walking all day I have taken a similar tiny 2.5 extra or early T3 bit. I was never sure if this was the cause, some would question my blood sugar levels. I am a type 3c ( post damaged pancreas) and more recently got a continuous blood glucose monitor, and now know some of these feelings are not sugar related ( my BG has to be very very low, in 2s, to get any symptoms). Much more recently getting postural hypotension but that is a totally different feeling, and unconnected to hypothyroidism ( though that was one of the drs.who immediately laid into my low TSH before testing dysautonomia BP/HR related to Long Covid). Glad your husband is onto these gaslighting drs!
I found my blood sugar dropping below 3 in January when I uppped my t3 dose to 12 from 6. With finger prick tests . I split the dose for a while but then tried again on 12 in one go and was ok.
Strong stuff but t3 levels were at 15% so maybe related to be starved of it?
Hi Sleepman,I use to take my t3 all at once then I split it into 3 lots.I need to put my t3 up but every time I do I get the shakes.Perhaps it could be something to do my sugar levels.What test is best?
It spooked me and I had a continuous monitor that lasts for 2 weeks and tracks sugar levels in bloods and shows on your phone. Freestyle libre 2 £50. This was more useful for diabetes checks than t3 I think.
Then I had the NHS Endo come up to see me,he said I had no TSH levels and that I shouldn't be taking T3,he really laid into me,t3 causes this and that,blah, blah. I was in tears at the end.
Well, you know what I would have said under similar circumstances? "Don't be so bloody studpid!" If T3 was that bad the whole human race would have died out long ago, because our thyroids make it naturally. How they get away with spreading mis-information and treating patients like naughty children is beyond me. It's a disgrace!
How much extra T3 did you take? If it was just a small amount, it doesn't seem likely that it was responsible for your shakes and all the rest. But, once they find out you're taking it, it suddenly becomes responsible for everything! Why? Because then they don't have to think about what is really wrong! Been there, done that and it's quie amazing how many things taking T3 can caise, everything from hiccups to the start of WW1! It's just their favourite excuse. Ignore it.
Your FT3 is only 51.35% through the range. You have plenty of room for an increase. Just take it slowly and monitor your reactions.
Oh, and being a crybaby is just another symptom of being hypo. You're not responsible.
Well, that amount would hardly be felt, let alone making you ill. So, hardly likely the increase was your problem.
Don't let your doctor talk to you like a naughty child! He's not your father or your boss. He has no juridiction over you. In fact, it's the opposite because you pay him - indirectly. Just tell him that's what you've done and that's an end to it. If he starts getting uppity, walk out. People take too much bad behaviour from doctors and it's time it stopped! He is not god, whatever he thinks!
My husband said the same thing about these Doctors thinking their God's.The thing is my Doctor is,a good friend of the Endo that I saw so he's just going along with what he's telling him.
I need to kn ow what to say though, regarding my TSH levels because I know that's what he's going to say.Any ideas?
Your husband is right! And it doesn't matter who's friends with whom, this isn't an Old Boy's Network!
Tell him that:
a) TSH is not a thyroid hormone
b) TSH is a pituitary hormone and it's low because the pituitary considers that you don't need it, not because you're taking to much thyroid hormone.
c) Taking almost any amount of T3 is going to satisfy the pituitary and it's going to stop production of TSH because you don't need it.
d) TSH has only two jobs: to stimulate the thyroid to make more thyroid hormone, and - possibly - to stimulate the proteins that carry out conversion of T4 to T3 - although a lot of people manage without it, and obviously in your case, it didn't work even when your TSH was high.
e) TSH has nothing to do with bones or hearts. Your bones and your heart do not need TSH to be healthy. They need good levels of T3. Far more dangerous to have an in-range TSH but with low FT3.
I won't go on because if you manage to get to e) you probably won't need to go any further to provoke a reaction! I doubt if your GP knows any of this, to suggest he googles it - all the information is out there waiting to be read.
Your FT4 is only 51.00% through the range, but as you're also taking T3, it's difficult to know if you need it higher or not. Let's just say that at this point, it's not the most important number.
I love Grey's robust response and I agree with her 100%. Doctor's are there to advise you and in theory anyway, make you better. They aren't there to tell you off, belittle you, make you feel small or guilty. Its supposed to be a health partnership between doctor and patient, not a dicatatorship. We're all adults here.
Your doctor can give you advice and an opinion, nothing more. And you aren't obliged to do what they say. We have to live in our bodies 24/7. They dont. We have to do what we have to do to to get through the day.
Maybe if thyroid wasn't so badly treated we wouldn't have to do things like go private or self source meds. Maybe say that next time you get a tongue bashing.
Some doctors are so far up their own a■□e I'm surprised they can see to get out of bed in the morning.
Because of 'wokeness' even the comedians can't be funny any more, so what is there to laugh at? Hurty words and 'people' being offended. Get a backbone, pleeeease.
Get some funnies going on the TV as laughter is the best medicine! We need a good belly laugh every day as it really is good for our health and the health of our nearest and dearest! I don’t care if I’m seen as batty as a box of frogs at times - I need to dump the c**p and laugh at something, even myself! Let’s all get the laughter going and change our outlook, even if it’s just for a few minutes!😅
Accord and Almus are the exact same product - except for the outer packaging.
helvella's medicines documents (UK and Rest of the World) can be found here:
helvella - Thyroid Hormone Medicines
helvella has created, and tries to maintain, documents containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world. There is now a specific world desiccated thyroid document.
I highly recommend viewing on a computer screen, or a decent sized tablet, rather than a phone. Even I find it less than satisfactory trying to view them on my phone.
helvella - Thyroid Hormone Medicines - UK
The UK document contains up-to-date versions of the Summary Matrixes for levothyroxine tablets, oral solutions and also liothyronine available in the UK. Includes descriptions of tablet markings which allow identification. Latest updates include all declared ingredients for all UK products and links to Patient Information Leaflets, etc.
Contains details of all known desiccated thyroid products.
helvella - Thyroid Hormone Medicines - RotW
Contains details of all levothyroxine, liothyronine and combination products - excluding desiccated thyroid products. Details available vary by country and manufacturer.
The link below takes you to a blog page which has direct links to the documents from Dropbox and QR codes to make it easy to access from phones. You will have to scroll down or up to find the link to the document you want.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
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