I have had the most horrible day today. I'm going to bed feeling very upset and confused.
I have been on Levothyroxine for the past 5 years. Prior to being diagnosed with a thyroid problem I had atrial fibrillation and had a reasonably successful ablation in 2011. I have only had a few runs of AF that required a 'pill in pocket' tablet. The AF settled very well.
I have never felt good since I started thyronine. In a previous post I mentioned just before starting medication my
T4= 10.6
TSH 2.87
T3= 4.8
After all the usual tests including my Vit D = 90, Folate=9 and B12= 655
Antibodies were normal.
5 years on my T4=13.6 on 75mcg and because my TSH dropped to 0.2 my doctor asked me to reduce the dose to 50mcgs x 4 days and 75mcg 3 days per week. She contacted the local hospital where the consultant Endocrinologist has asked for my medication to be stopped immediately and has given my GP a list of other bloods to be carried out. Apologies but I haven't see list yet.
If my T4 is only 13.6 on medication I am very scared that my T4 will drop even further if my medication is stopped and I become ill with the drastically cessation of thyronine from my system.
I wonder if I have a secondary thyroid problem. I seen another consultant a few years ago and he didn't suggest stopping. In fact he was going to add T3!
Initially when my dose is increased it seems to kickstart the T4. When I first went on 75mcg my T4 was up to 17.2 and my TSH was 1.6 I actually felt great. I also noticed an increase in etopic heart beats when my T4 is lower. Also my pulse before starting thyronine was barely 60bpm. Now it sits around 70.
I really don't know what to do. I am getting so much conflicting information. I feel so stressed. I have told my GP I do not want to stop. I want to find out why I have a persistent T4 that is low.
Can you imagine stopping tablets in this present COVID-19 crisis where you gave virtually no access to seek help or advice.
Anyone who could give me their take on this I'd sure appreciate it so thank you in advance.
Written by
Munroedundee1
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The heart needs a GOOD level of T3 - so the Endo who was going to add T3 had the right idea. The Levo you are taking is inactive - so it is the T3 result that is key.
Your dose is still quite small and stopping it will reduce your T3 even more - not good.
Plenty of information out there - google - Heart and Low T3 PubMed. Shout if you cannot find anything ...
Treating you by the TSH is so wrong as I'm sure you know.
I am so sorry. I can feel your anguish, pain, confusion. It's leaping off the page. But I hear you.
Now I'm going to tell you a short story.
I used to be really active on here a few years ago. Did lots of research. Took supplements till they came out of my ears.
And then I listened.
Still didn't work.
The little pill my GP gave me wasn't magic.
Maybe it is for some people but it wasn't for me.
My IBS got really bad. So of course nothing was working. Couldn't absorb anything.
Then, because of a post I did .... 6 years ago.....someone - (and I so wish I could find the thread to thank her), suggested I look into acid reflux. And she was right. It wasn't presenting in a classic way, and anyway GP's don't treat it....
Well they do with pills, but it doesn't treat the cause, just the symptoms.
Anyways, she told me to do a test. First thing, when you get up, take a teaspoon of bicarbonate of soda in a glass of water.
If your body is balanced you will burp almost immediately. I took six minutes. Unbelievable. She told me she was five, which is apparently, v bad.
Anyway's. I'm not medical. Nor am I trying to sell you anything.
Just trying to help.
You can pm me if you like.
The thing I'm learning is we need to listen. You know the GP's aren't getting you. Been there.
You forgot the conclusion. If you burb very quickly you have a lot of acid in your stomach (which is the bad thing you refer to). If it takes a long time to react then you have very little acid in your stomach.
This is because Sodium bicarbonate is a "base" (ie the opposite to acid). If you drop this base into an acidic environment(your stomach) it will react by generating carbon dioxide.
So there you are, fast reaction = acid stomach. Slow reaction = not very much acid in your stomach, which is not OK for someone with a thyroid problem, we need a certain amount of acid to make our ingested T4 (Levo) work.
Oh, and it was probably Grey Goose who told you that trick - I tried it too, it's very good.
The aim of us taking thyroid hormone replacements is to bring our TSH to 1 or lower. Many doctors think 'somewhere' in the range is fine as yours seem to think. Yours is nearly 3.
If you have not had your Free T4 and Free T3 checked, it should be done. Both should be in the upper part of the ranges. Our bodies cannot function without T3 as it is the active hormone required in all of our T3 receptor cells.
Many doctors play 'the numbers game' whilst ignoring clinical symptoms that need to be relieved. I doubt if any know the disabling symptoms we can have.
They concentrate on the TSH which is from the pituitary gland- not the thyroid gland.
Cursor down to 'Dear Thyroid Patients' in the following link and it's no wonder this doctor can take on no more patients.
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