This is my first time to post and was after bit of advice as little confused
Last September was diagnosed with thyroditis. Was put on Levo and recently started feeling unwell, hot sweating out of puff, joint pain, insomnia etc I had some blood tests done which came back that I was anemic but not due to iron def. gp wrote to heamatology and had more tests on Thursday. Had call to say now hyperthyroidism and to stop medication with immediate affect, he is contacting specialist and will contact me. Would anyone be able to advise if likely to be put on medication to get levels down. I have always been a very cold person and finding it very hard to cope with the heat side of things and having funny turns when getting out of breath but not sure if then having panic attacks. Thanks
These are my results
Plasma free t3 range 2.6 -5.7
July - 15 abnormal
Plasma tsh level range 0.30 - 4.20
July 0.01 abnormal
Nov 0.11 abnormal
Sep 0.23 abnormal
Aug 0.36 normal
Plasma free t4 level range 9-19
July 31.5 abnormal
Nov 14.1 normal
Sept 14.7 normal
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Veejay17
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Pretty sure those results are indicating Hashi's - Hashimoto' thyroiditis. Have you had any antibodies tested? If not, insist on having them done before taking anti-thyroid medication. That is a treatment for Grave's, not Hashi's. You need:
TPO and Tg antibodies for Hashi's - or, as it is know in the NHS, Autoimmune Thyroiditis
TRAB or TSI for Grave's
As you have stopped taking your levo, the levels will come down, and eventually, you will go back to being hypo. That's the way Hashi's works.
With Grave's, the thyroid is in over-drive, producing far too much thyroid hormone - more than you have in any of those results. With Hashi's, the levels rise due to the dying thyroid cells dumping their store of hormone into the blood. Not the same thing at all. Unfortunately, very few doctors know the difference. So, you have to be strict.
None of these results show you were hypothyroid ....TSH was always extremely low
When hypothyroid TSH is high and Ft4 and Ft3 low
These results all show very low TSH
Do you have any other results?
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 you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Low vitamin levels also common if have Graves’ disease (hyperthyroid)
TPO antibodies result isn’t very high so could be Hashimoto’s or Graves
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 .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Have I been given wrong medication, all I know is that I was diagnosed with thyroditis. I was very unwell, cold, tired like never felt before and other bits. I improved once started the meds only just recently in last month that so hot, sweating, got shakes, insomnia, had few funny turns as out of breath and possibly had panic attack on top
No, you weren't given the wrong medication. It's just that SlowDragon doubted you needed medication at all. But, your symptoms do sound hypo. And, if the levo made you feel better, then that's the main thing.
The reason you started to feel unwell recently, are these results here:
free t3 15 (2.6 -5.7)
free t4 31.5 (9-19)
And, these result are why they're now saying you're hyper, because they don't understand how Hashi's works. But, you had a Hashi's 'hyper' swing. Which is perfectly normal. And just needs you to stop taking the levo for a while. The levels will come down by themselves and you will start to feel hypo again. Here's a brief run-down 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.
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