As this is my first post I will try and give short history as it is important.
At the age of 17 (I am now 74) I was diagnosed with Hypoactive thyroid which strangely made me put on weight and also made one of eyes bulge. I was given iodine in tablet form and eventually things went back to normal .
Many years later when I was about 40 I started feeling very strange with fatigue back pain, voice changes at times and when I was trying to have a conversation I found it very hard to put sentences together. I was also very stressed at the time and usual story was put on Antidepressants. I was not getting better and on one occasion I saw a different GP and she arranged blood tests and was horrified at the result of my Thyroid test as the levels where almost non existent and I was sent to a lady Endo who was consultant at the Royal free Hospital in London. She prescribed 100 mcg of Thyroxin and 25 mcg of T3. I soon felt better and my energy returned. I remember the Dr saying that I needed to be at the ‘high end of levels
I saw this doctor for years and my GP at the time was very sympathetic and never quiried the dosage I was taking. All in all I was on that dosage for at least 25 years.
Unfortunately my Endo lady died and I had also moved home and had new GP who after some blood tests told me I had early hyperparathyroid. issues and I visited a new Endo who was horrified when she saw Thyroid levels. She said I was over medicated and therefor Hyperactive as my Thyroid was suppressed and I needed to reduce my T3 and come off it eventually as it would not be prescribed by the NHS.
She also said that whoever put me on 25 mcg T3 was very irresponsible which surprised me as the my Endo was consultant of one of the best hospitals in London.
Also I had no overactive thyroid symptoms and said could it just be that my thyroid was not able to work sufficiently because off my history.She would not have it but I was very worried to come off the T3 as I had taken it for so long and my energy was not great and I suffered a lot of muscle pain. She blamed it all on my overmedicating. She did say my GP could make an application to the BMA-for continuing the T3 as I was taking it for such a long period. They agreed but she said to reduce it gradually to 5 mcg as she was still convinced I was over medicating.
I have tried this for a couple of years now and I feel more and more tired to a point where I keep falling asleep when I sit down to relax and I am totally exhausted after very little housework. So I want to insist on increasing my T3
My last results where TSH 0.05 T4 15.3 T3 4.9
Sorry my post is so long and I hope it makes sense but my question is could my thyroid be suppressed from past history as I have no hypo active symptoms?
To whoever takes the time to read this than you very much in advance
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Abijack
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Hi Hopefully the more knowledgeable ones will be along soon or later today. I have insomnia so I'm up!🤷🏿♀️
It would be good if you could give the ranges for your results, its a bit hard to see if your T3 levels are good (from the face of it and what you say, I'd conclude not good enough but ranges help )
You were fine for 25 years (!) on a dose of T3 prescribed (by what sounds like a miracle of an endocrinologist, that's a loss to the profession) it also seems you had double luck with an educated and understanding G P. Now your luck has changed and you'll have to keep it going and make a case for having it restored. I have no idea, once a reduction happens what the chances of that are. By that I mean whether it is harder to get it back.
Since the BMA said everything is fine you can keep it, what was the justification for reducing it? Surely the BMA know whether your dose was safe or not? They seemed to agree that you felt well and there might be detriment caused to you by having it withdrawn after taking it so long. But still, reducing it to almost nothing, is in effect a withdrawal by stealth, which goes against the decision.
Other than casting aspersions on the diagnostic competencies of her (deceased) colleagues, did the new consult describe what her specific concerns were of you continuing to take 25mcg T3 in relation to your health and if so, at least order some tests to see if those concerns were valid? If not, then what was the basis for her reducing it? From what little I know, a dose of 25 mcg T3 alongside T4 100 is not unusual.
You were in good health. Now your quality of life has been compromised to the point you cannot carry out normal activities without difficulty. That is the opposite of what a doctor is meant to do. You go to the doctor because you are ill and expect to come out feeling better, maybe not cured but better.
On this occasion you've gone in feeling well and now feel worse
Did the consultant suggest altering T4 (thyroxine) medicine at any point perhaps increasing to compensate?
You can make the case that you have experienced a SEVERE curtailing of your quality of life and need it restored, even the BMA agreed that might happen (as I read it anyway) so you have grounds to get the original dose reinstated. It doesn't look like you are going to manage well going forward without it.
Thank you so much for reply. I am just mad staying up late.Lockdown has changed my routine.The main reason was the surprised THS and property the fact that they wanted people to come of it.
Forgot to mention most important that my hairline and corners are thinning considerably and corners of eyebrows. Topically of underachieve Thyroid.I’ll be lucky if they increase it to ten to start with but I will insist.
I agree with Alanna012 you were feeling well so your doctor should not have told you to reduce your dose. Your new doctor clearly has no understanding of your condition and would change to one that does if I was you.
my question is could my thyroid be suppressed from past history as I have no hypo active symptoms?
Not quite sure what you're asking, there. What do you mean by a 'suppressed thyroid'? Your thyroid won't be producing any hormone, now, because you're taking exogenous hormone. But, that's the way it works for everybody, no matter how long they've been taking it, or how much.
I think you mean 'hyperactive symptoms', don't you? This endo you saw is obviously one of the ignorant ones that suppressed TSH = hyper. It doesn't. It doesn't equal anything at all on its own. It has to be considered in conjunction with the FT4 and - especially - the FT3. You are only over-medicated if your FT3 is well over the top of the range. And, if you're taking T3, your TSH is bound to be suppressed. That is a given, and it doesn't matter. Your problem is your endo, not your thyroid.
Many people need addition of T3 alongside levothyroxine
Can you add ranges (figures in brackets after each result)
On almost any dose of T3 TSH is suppressed, it’s largely irrelevant. Most important results are ALWAYS Ft3 followed by Ft4
Was this test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
How much T3 are you currently taking, just 5mcg??
Ideally last 2.5mcg of T3 dose 8-12 hours before test
Your results look under medicated
There’s currently a ludicrous and incorrect obsession that thyroid patients should have TSH “within range “ .....
Frequently on just levothyroxine, but especially with any dose of T3 added TSH will be suppressed. As long as Ft4 and Ft3 are within range it’s not a problem
First step is to get FULL Thyroid and vitamin testing done see exactly where you are
Ask GP to test vitamin D, folate, ferritin and B12
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if under medicated
Ask GP to test vitamin levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
If/when also on T3, make sure to take last third or quarter of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Thank you for your explicit reply. My vitamins are ok.Endo put me on vitami D some time ago.
She was just determined to make my TSH recover which has shown to be impossible. I have learned from this site that suppressed thyroid is not necessarily from overmedicating. As you say there is an ludicrous obsession about TSH at the moment. But my lab result goes like this
Than it says if patient is on Thyroxin replacement than the result is consistent with thyroxine over replacement.
However check the thyroxine dosage.
I am not sure what dosage to encreas the T3 to as I don’t think I could tolerate 25 mcg like I used to as over the years my blood pressure started playing up but is now
regulated .25 mcg did make me a bit hyper.
Do you know if 10 mcg can be sufficient ore should I ask for 15? Sorry if my questions seem stupid but you seem to be better informed than me.
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