Following very good advice on there, I bit the bullet and paid for another private test as I was feeling so ill. My previous test results and symptoms (over-heated, sleeplessness, high-ish blood pressure, extreme flaky skin and itching, aching), suggested I might be over-replaced. I reduced my levo and felt a lot better within a week but still on/off ill. I'm currently taking 75mcg and I have two questions:
Could I still be a bit over replaced and need to reduce a bit more?
Why (despite my vitamin-levels improvement (iron and b12 have both gone up and I stopped the vit d a week before the test as was worried I was over-doing the vitamins), and gluten and soya-free diet), has my Thyroid Peroxidase antibodies continued to rise from 50/ 60/ 77 and now 119?
My current results:
Inflammation CRP HS 1.25 mg/L (Range: < 5)
Iron Status
Ferritin 37.9 ug/L (Range: 13 - 150)
Vitamins
Folate - Serum >19.8 ug/L (Range: > 3.89)
Vitamin B12 - Active 111.000 pmol/L (Range: > 37.5)
Vitamin D 77.6 nmol/L (Range: 50 - 175)
Thyroid Hormones
TSH X 0.01 mIU/L (Range: 0.27 - 4.2)
Free T3 6.69 pmol/L (Range: 3.1 - 6.8)
Free Thyroxine X 25.700 pmol/L (Range: 12 - 22)
Autoimmunity
Thyroglobulin Antibodies X 637.000 kIU/L (Range: < 115)
Thyroid Peroxidase Antibodies X 119 kIU/L (Range: < 34)
Thank you
Written by
msmono
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Thyroid antibody levels have little to do with either vitamin levels or diets. I know people say that a gluten-free diet and reduce them, but I've yet to see any over-whelming proof. In any case, whether the level rises or decreases, you'll still have Hashi's, that won't go away. Higher levels don't mean your Hashi's is getting worse, nor do lower levels mean it's getting better. It's just there. The point with a gluten-free diet is that it makes some people feel better, but if you're just following it to reduce antibodies, there's not much point.
Soy, of course, is something else entirely, and has nothing to do with antibodies. Soy can stop you absorbing thyroid hormone at a cellular level and make you more hypo, so you really don't want to be consuming that.
Thanks GG. I'm fairly sure that going gluten free has stopped the diarrhea that I've had every day for nearly ten years. I do wonder if this has increased my levo absorption (and maybe my b12 as this has improved a lot) and perhaps I don't need as much now as when I started - hence high FT3 and 4. I'm eating almost no soya now -this has been hard as I used to eat lots of veg burgers/sausages. I forgot to mention that I can see a swelling on my neck now - I originally thought is showed because Ive lost weight but it seems to be my thyroid swollen.
No, I don't think that it's because you don't need as much levo - that would be highly unusual given that you have Hashi's, which slowly destroys your thyroid, meaning that you need more over time, rather than less. I think, as SlowDragon says, you've just had a Hashi's 'hyper' swing, where the dying cells dump their store of thyroid hormone into the blood, causing the FT4/3 to rise sharply, and therefore the TSH to drop.
It's very possible, therefore, that your thyroid is swollen at the moment.
Thanks GG. I don't really understabd the whole hashi swing/flare thing yet. My T3/4levels have been high for around 4-6 weeks and there was a suggestion on here that I might have 'missed the dosage sweet spot' because my endo put me up from 50 to 100 mcg in one go (in July) and I haven't really been right since then - though have had some ok weeks. I might try alternating 50/75. Good to know that a swollen thyroid may just be related to that.
OK, so Hashi's is an autoimmune disease, where the immune system attacks and slowly destroys the thyroid.
After every attack, 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.
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 do 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 get rid of the antibodies, you will still have Hashi's, because the antibodies are not the disease.
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 by 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, but it 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.
My T3/4levels have been high for around 4-6 weeks and there was a suggestion on here that I might have 'missed the dosage sweet spot' because my endo put me up from 50 to 100 mcg in one go
I very much doubt that your sweet spot was somewhere between 50 and 100 mcg. However, that doesn't mean that going from 50 to 100 in one go was a good idea. It could have stressed your body and made you feel bad. Also, it could have coincided with a Hashi's swing. And the Hashi's swing theory is born out by the rise in antibodies. They are at their highest just after an attack.
Really helpful thanks. I think I need to ask my G.P. to refer me to an NHS endo and hope they'll agree with all this. I've got an NHS blood test due before my next prescription so hopefully the levels will have dropped rather than gone up even more because the G.P. will reduce my script. (I missed two doses before this text to try and drop it down) Thanks again
Thank you. I started my journey with a private endo as there isn't a hashis-friendly NHS one near enough (I'm in the south) but i cant really afford to stay private as due to illness i had to give up my well paid (hectic) job 😳 im a bit worried about how swollen my thyroid seems to be getting now.
Ask doctor to refer you to an endocrinologist so that he/she can advise about your swollen thyroid gland. I think that's important.
I'm sorry you had to resign from your job. It is ridiculous that we have to source a private doctor so put up a fresh post and ask if anyone knows of a good endocrinologist (giving your area) and to send you a private message. Your post will be closed so that private message can be sent.
Looks like you may be having a Hashimoto's flare. FT4 and FT3 are both on high side......but this could be temporary flare
You might consider reducing to 50mcg/75mcg alternate days.
Retesting 6-8 weeks later
Antibodies may have risen in response to Hashimoto's flare.
Did you noticeany reduction in symptoms when you went gluten free?
Vitamin D is still too low.
Ferritin is low too. Eating liver or liver pate once a week, plus other iron rich foods like black pudding, prawns, spinach, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
Hi and thanks SD, I was worried about my iron as I was taking lots of liquid supplement and wondered if this was making me so ill (there is haemochromatosisin my family). Now I see it is still low I will hit the iron again (I'm vegetarian so it's more tricky but now I feel safe to take supplements. What is a hashi's flare? I thought I knew but now I'm not sure. By the way I forgot to mention my swollen thyroid - I can see it - do I need to see a doctor do you think? (not sure re gluten -didn't feel better but no upset stomachs which id previously had every morning.
I stopped the vit d a week before the test as was worried I was over-doing the vitamins
There is no need to stop Vit D before testing. The NHS lab who does tests for the general public vitamindtest.org.uk/ tells us to continue taking our supplement but just take after the test on the day.
The Vit D Council recommends a level of 125nmol/L and the Vit D Society recommends a level of 100-150nmol/L so you still have some way to go before your have reached the recommended level.
Do you take a B Complex? Or Biotin as a separate supplement? If so, did you leave it off for 7 days before the test?
Hi, and thank you for posting. i only take b12 as this was definitely low for a long time but has finally gone up. Noted re the vitamin ‘d’. (I also take k)
Do you also take magnesium, another important cofactor of D3. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form.
i only take b12 as this was definitely low for a long time but has finally gone up
When taking B12, we also need a good B Complex to keep all the B vitamins in balance.
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Medichecks thyroid results
Blood Test Results - Newly Diagnosed Hypothyroidism & TTC
Can you help with new thyroid blood test results, please 
Results in from medichecks. I'd love some input on them please.
My MediCheck Results any clues?
