I am puzzled about my latest results and need some help. I am 77 and was diagnosed with hypothyroidism 19 years ago when my TSH was 75. I was prescribed Thyroxine but I can't remember how much or how long I took it. I felt that it wasn't helping me , so I did my own research. I found out about NDT and bought Armour from America. When a prescription was needed I bought Thyroyd from Thailand. I took 4 grains. I was well on that and just did an annual blood test. Then when Thyroyd was discontinued I took Thyroid S but I don't think I was so good on it. Two years ago I was getting breathless just walking at a normal pace. I had a blood test, chest x-ray, ECG and an echocardiogram. All were normal so I assumed it was a thyroid problem. We come to the time when NDT was unavailable and I had to ask the doctor for Thyroxine. He was horrified at how much NDT I was taking, although he knew nothing about it and had to read up on it before getting back to me. He prescribed 200mcg and when I was tested on that, my TSH was suppressed (as it has been for years) and my T4 was 22.6. He said I was overmedicated (sigh) and dropped it to 175mcg. Before I started on that I managed to get a supply of Thyroid S. So I have been on 175mcg for 5 weeks and did a private test with Thriva to include vitamins and Antibodies. I stopped B vitamins a week before and did my test 24 hours after my last dose of Throxine.
Thyroglobulin Antibodies (TgAB) 18.6 kU/L (0 - 300) Normal
Thyroid Peroxidese Antibodies (TPOAb) 81.3 klu/L (0 - 200) High
B12 144pmol/L (37.5 - 300) Normal
Ferritin 53 ug/L (13 - 150) Optimal
Folate 31.6 nmol/t (8.83 -60.8) Optimal
Vitamin D 241 nmol/L High (I have stopped taking it for the moment)
TSH .005 (0.27 - 4.2) Abnormal
Free T4 33.3 (12 - 22) Very High
T3 7.5 (3.1 -6.8) Abnormal
I do not understand how these results are so high. I have not taken any Thyroxine for 5 days since I got the results. Should I stay off it for a while and when I do start again, what dose should I take? I don't feel any different. My hair has been falling out again since I went back on Thyroxine, my weight has increased and I still have the breathlessness which is what bothers me most of all. I was hoping low vitamins were maybe the cause of it but according to Thriva they are normal, except for the Vitamin D. Where do I go from here?
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dottyb09
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The post is puzzling. Are you now on T4 only, or are taking NDT with it or now NDT alone or switching and swapping quickly ? The trouble with changing thyroid hormones so quickly and drastically is that your body has no time to respond and find a new stable position. It looks as if you are now somewhat overdosed on NDT and should try to get FT3 down below 7 or so. If on T4 only, there is no wonder that you have problems since switching to T4. In your case FT3 should be your guide. You should certainly not stop taking the hormone T4 just like that - it is even more strain on your system. Any changes should be gently done on a trial and error case, seeing how you feel after a while on one formulation before switching slowly towards another.
Thank you for your reply diogenes . No, I'm not on NDT, I wish I was. I didn't have a problem when I first went from NDT to Thyroxine and as I was on 4 grains of NDT, 175mccg is only a fraction of that. I stopped taking it because I don't know what effect such a high T4 result would have on the body.
So, what thyroid hormone replacement do you intend to go forward with ?
Now you have NDT which suited you better and see you also asked for PMs to source T3 a while ago.
It would be interesting to compare these results to those the doctor took when you were on 200 T4 : but I haven't a definitive answer.
The T3 is marginally over range and your T4 should drop into range in a day or two if you do not take the T4 - it is a storage hormone and takes around 6-8 weeks to fully leave the body.
But Levothyroxine doesn't suit you anyway and presume you switching to another option.
I think your ferritin needs to be optimal at well over 70 - and could be responsible for your breathlessness and hair loss.
I know I need my ferritin at around 100 for optimal conversion of the T4 component in my NDT.
I don't know about the adverse effects of an over range vitamin D :
If you plan to switch back to NDT I would suggest you start low and slowly increase by 1/4 grains, working back up to a dose that relieves your symptoms
I haven't read any adverse comments on this new formula Thyroid S, so presume full steam ahead ?
P.S. I don't think you can compare NDT with synthetic thyroid hormones and I also don't think when you have been on NDT for so long a " straight swop " to synthetics works that well.
Thank you pennyannie . Yes I did get some T3 but haven't used it. I am not on NDT now as I don't have any. I believe you can obtain it now but the price has shot up and I am on a low income, but if my results are going to fluctuate then I will have to get some. Thriva said that too much Vitamin D3 can cause kidney problems. What ferritin supplement do you take?
Oh, sorry I seem to have misunderstood about the Thyroid S :
So how long were you on 200 mcg T4 before being dropped down to 175 mcg ?
I was prescribed Ferrous Fumarate 322mcg x 3 daily when my ferritin came in at 22:
I couldn't get on with these but was not offered an alternative :
I purchased Solgar Gentle Iron, and Spatone and ate liver twice a week :
I now maintain my ferritin with Asda frozen chickens livers - 1 tub a week which I whizz down, once defrosted and flash fried, into a pate and store in the fridge. I take a spoonful most mornings and a dollop of Hellmans helps this medicine go down.
I didn't recognise the antibody range and just thought it was " me " and needed to read a bit more !!!
This all makes sense now - you may find as your thyroid becomes further damaged through this autoimmune disease that you will need to consider adding in a little of that T3 with your T4.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100 mcg. - all the same known hormones as that found in NDT .
T4 is a storage hormone and needs to be converted by the body into T3, the active hormone tht the body runs on and is said to be around 4 times more powerful than T4 with the average person utilising around 50 T3 daily just to function.
Your abilty to convert the T4 into T3 can be comprimised by non optimal ferritin, folate, B12 and vitamin D plus any physiological stress ( emotional or physical ) infllammation, dieting, depression and or ageing.
You mention you initially felt good on 4 grains of NDT which would have contained around 36 mcg of T3 so around 70% of your average daily need if we accept the average person needs around 50 T3.
You then switched to Thyroid S and the same dose was less effective as probably your conversion was becoming further compromised.
I think you have become more reliant on the T3 content of the NDT than the T4 content and you may well find that T3 suits you better long term.
I too am in my 70's and we can't turn back the clock but we can try to build on what we can to optimise our outcomes.
I'm with Graves post RAI ablation in 2005 and have been medicating with Thyroid S for the past 3 years and take just 1 + 1/2 grains daily.
All my vitamins and minerals are optimal and I also take adrenal glandular and have been very unwell dealing with the consequences of long term RAI treatment and being dosed on T4 only for some 10 years and dosed and monitoed on just a TSH reading and prescribed anti depressants when I asked questions.
That is useful information, thank you. I did think that with a T4 of 33 my T3 should have been higher. I will see how I get on with the prescribed 175mcg when I start it again and if my T3 is low I will add some in. Sorry to hear of your health problems, I have been lucky because my thyroid is the only health condition which troubles me, which is surprising as I have had some major traumas in my life. Have to look forward to the end of lockdown and a return to a more normal life.
Yes, I agree as all my health poblems are also related to the treatment I have had for my thyroid issues, I never realised, until too late, what such a major gland the thyroid is and living without one does have it's challenges when T4 is the treatment option offered on the NHS.
Thyroid Peroxidese Antibodies (TPOAb) 81.3 klu/L (0 - 200) High
Are you sure about the top of that range? I've never seen a TPOab range that goes up that high. And, if that is the top of the range, then your result is not high.
Usually the top of the range is about 35, I think. And, if that is the case here, and your result is 81.3, then it is positive for Hashi's. Did you know you have Hashi's?
And, if you have Hashi's, then those results are more than likely due to a Hashi's 'hyper' swing - do you know how that works? Certainly those numbers do look like a Hashi's 'hyper' swing to me. And, if that's what it is, it's only temporary. The numbers will go down by themselves as the excess hormone is used up, and you will be hypo again. So, good idea to stop the levo for a while, until you start to feel the hypo symptoms creeping in again, and then start back on the same dose.
Don't involve your doctor at this point, he wouldn't understand. Takes one to know one, as they say, and I am one - Hashi's sufferer, that is!
Thank you greygoose . i think you are right about the antibodies. There is a green line that goes from 0 to 34 and then it turns orange up to 200 so I presume the green section is the normal range. I have never been told I have Hashi's but presumed that is what I have after a lot of reading on this site. I have heard of a 'hyper' swing but didn't know the details so thank you for the advice about starting back on the same dose when I feel my symptoms returning. Do you think my breathlessness could be caused by not enough ferritin because I have had it even when I was on NDT?Thriva told me to make an appointment with my doctor but there was no way I was going to do that, I get better advice here. I asked him a long time ago if he would give me a prescription for NDT. He said he would have to ask his endocrinologist (he has hypothyroidism himself). His endocrinologist said no because my doctor would be responsible if anything went wrong. Explaining that it was the standard treatment before Thyroxine didn't make any difference.
Yes, the green line is the range. The orange is out of range. Very confusing way of giving results, I know.
So, you have Hashi's, and you have just had a Hashi's 'hyper' swing. Here's a brief rundown of how Hashi's works:
OK, so Hashi's is an autoimmune disease, where the immune system attacks and slowly destroys the thyroid. It is diagnosed by testing Thyroid Peroxidase (TPO) antibodies and Thyroglobulin (Tg) antibodies.
Contrary to popular belief, it is not the TPO/Tg antibodies themselves that attack the thyroid:
"When lymphocytes infiltrate the thyroid gland, mistakenly taking it for a foreign bacteria invader, they damage the thyroid gland and release thyroid peroxidase &/or thyroglobulin into the blood stream. These don't belong outside of the thyroid gland so antibodies are developed to mop them up.
The antibodies are a result of the attack on the thyroid gland, the antibodies don't cause the attack."
After every immune system attack on the thyroid, the dying cells release their stock of thyroid hormone into the blood stream, causing the levels of the Frees to shoot up - FT4 to around 30 something, FT3 around 11/12 - and the TSH therefore drops to suppressed.
There is no knowing how long these high levels will persist, but eventually, they will drop by themselves as the excess hormone is used up or excreted, and not only will you become hypo again, but slightly more hypo than before, because there is now less thyroid to make hormone.
(NB: A Hashi's 'hyper' swing is not true hyperthyroidism in that your thyroid is over-producing thyroid hormone. It's physically impossible to 'go hyper' if you are basically hypo. The thyroid cannot regenerate itself to the point of over production of hormones - or even normal production. Very few doctors appear to know that.)
Therefore, it's very important that your doctor does not reduce your prescription, because you’re going to need it again! If you start to feel over-medicated at that point - some do, some don't - the best thing is to stop levo for a few days, then, when you feel hypo again, start taking it again. It's very important to know one's body, and how it reacts.
There is no cure for Hashi's - which is probably one of the reasons that doctors ignore it - apart from the fact that they know nothing about it, of course!
However, between the 'hyper' swing, and the descent back into hypothyroidism, there can be a phase - quite a long one, sometimes - of normality, where the person is neither hypo nor 'hyper'. This is where people sometimes start talking of having 'cured' their Hashi's, by whatever means. But, it doesn't last. Eventually, you will go hypo again.
But, there are things the patient can try for him/herself to help them feel a bit better:
a) adopt a 100% gluten-free diet. Hashi's people are often sensitive to gluten, even if they don't have Coeliac disease, so stopping it can make them feel much better. Worth a try. Some say that going gluten-free will reduce antibodies – I’ve never seen conclusive proof of that, but, you should be aware that even if you were to get rid of the antibodies completely, you would still have Hashi's, because the antibodies are not the disease. It is not the TPO/Tg antibodies that do the attacking.
b) take selenium. This is not only reputed to reduce antibodies, but can also help with conversion of T4 to T3 - something that Hashi's people often find difficult.
c) the best way to even out the swings from hypo to 'hyper' (often called Hashi's Flares, but that doesn't really sum up the way it works) is to keep the TSH suppressed. This is difficult because doctors are terrified of a suppressed TSH, for various false reasons, and because they don't understand the workings of Hashi's. But, TSH - Thyroid Stimulating Hormone (a pituitary hormone) - tries to stimulate the thyroid to make more hormone, which also stimulates the immune system to attack. So, the less gland activity there is, the less immune system activity there will be, meaning less attacks, gland destruction slowed down and less swinging from hypo to hyper and back.
Do you think my breathlessness could be caused by not enough ferritin because I have had it even when I was on NDT?
Oh, absolutely, yes it could. And for the hair-loss.
Thank you greygoose for that explanation. I have a better understanding of what is involved now. So, I will stay off thyroxine until I feel hypo symptoms returning and if I test after being on it for six weeks and my T4 and T3 are not optimum I will ask for an increase or add in some T3 if the conversion of T4 to T3 is not good. I will also try to increase my ferritin.
Rather than try to interpret those weird coloured graphs that Thriva use, you can save yourself some confusion by following the instructions here on how to download or print your results as a PDF file :
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