Hello, can someone tell me what my results mean from an antibody perspective please? What’s the difference between the Peroxidase and Thyroglobulin?
These results come after stopping thyroxine, this is the timeline:
*2012 - after first successful pregnancy, developed lots of symptoms, never tested but remained unwell
*2014 - after second successful pregnancy, diagnosed with hyperthyroid and started on carbimazole for around one month, which sent me hypothyroid and started on Levothyroxine for around 5 years
*Felt awful the entire time on thyroxine, all normal thyroid results from endocrinologist - had 3 late miscarriages in 2016, 2018, 2020 - no explanation found for them
*Stopped thyroxine in Sept 2019, after a few months thyroid results were back to normal range (became more hyper during pregnancy in 2020, but not out of range) but peroxidase antibodies raised a bit
*Then tested in March 2021 and was hyperthyroid, but only just out of range.
*Now just done test and results attached show both antibodies raised and tsh now hypothyroid.
I don’t understand why it’s swinging between hyper and hypo and know that docs will want me to go back on thyroxine, but am not comfortable with this seeing as i was so ill for 5 years on it, and anyway, after being off it for 18 months I still got a hyper result?!
Thank you for any help, this is so hard to navigate.
And my vitamin levels are also down, but I eat well, and they never seem to increase much at all!
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High thyroid antibodies confirms autoimmune thyroid disease also called Hashimoto’s
Vitamin levels are low BECAUSE you are hypothyroid
When hypothyroid we frequently have low stomach acid, this leads to poor nutrient absorption and low vitamin levels as direct result
Standard starter dose of levothyroxine is 50mcg
Bloods should be retested 6-8 weeks after each dose increase
The aim of levothyroxine is to increase the dose slowly upwards in 25mcg steps until TSH is around or under one. Ft4 will be in top of range and Ft3 at least 50-60% through range
Essential to regularly retest vitamin D, folate, ferritin and B12 and supplement to maintain optimal vitamin levels
With Hashimoto’s gluten intolerance is EXTREMELY common. Getting coeliac blood test done before considering trial on strictly gluten free diet
Hashimoto’s frequently starts with transient hyperthyroid results and symptoms before becoming increasingly hypothyroid as thyroid is destroyed
But, I wasn’t hypothyroid 3 months ago, I was hyperthyroid, and I’m sure if I test again at some point I will be hyperthyroid...
That's exactly what happens with Hashi's. It often starts with a "hyper" episode and swings between hypo and hyper; however, it's not true hyperthyroidism it's a false hyper.
Hashi's is where the immune system attacks the thyroid and gradually destroys it. When the attack happens the thyroid releases a lot of hormone and this increases the FT4 and FT3 levels and reduces the TSH level, giving the appearance of "hyper" in test results and causing hyper type symptoms. The antibodies come along and mop up the mess and eventually things settle down again.
So I've now had my results back from rheumatology appt which bloods were taken about 4 days before the results I have posted above.
If you want to compare results the tests must be taken under exactly the same conditions each time, ie
Blood draw at the same time
Last dose of Levo at the same time
Whether you had anything to eat or drink should be the same.
Always advised here, when having thyroid tests:
* Blood draw no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If looking for a diagnosis of hypothyroidism, an increase in dose of Levo or to avoid a reduction then we need the highest possible TSH
* Nothing to eat or drink except water before the blood draw. This is because eating can lower TSH and coffee can affect TSH.
* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.
* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).
These are patient to patient tips which we don't discuss with phlebotomists or doctors.
Were both tests done like this?
Apparently thyroid is 'absolutely fine'. TSH around 3, and FT4 /Ft3 also 'normal.
Do you have the actual results and reference ranges for these results? Just because they are within range (TSH of 3 is within range) doesn't mean it's fine. A treated Hypo patient on Levo only usually feels best when TSH is below 1. TSH is recommended to be no higher than 2.5, in some cases lower, according to the following:
Fine tuning of the dose could be necessary in some patients
* aim of levothyroxine treatment is to make the patient feel better, and the dose should be adjusted to maintain the level of thyroid stimulating hormone within the lower half of the reference range, around 0.4 to 2.5 mU/l. If the patient feels perfectly well with a level in the upper half of the reference range, then adjustment is unnecessary
How can blood tests be used to manage thyroid disorders?
.....
Occasionally patients only feel well if the TSH is below normal or suppressed. This is usually not harmful as long as it is not completely undetectable and/or the FT3 is clearly normal.
There are also certain patients who only feel better if the TSH is just above the reference range. Within the limits described above, it is recommended that patients and their supervising doctors set individual targets that are right for their particular circumstances.
.....
Also, Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional publication for doctors):
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).*"
You can obtain a copy of this article from Dionne at ThyroidUK:
tukadmin@thyroiduk.org
So your TSH at 3, although within range, is too high.
Also, describing FT4 and FT3 as "normal" only means that the results fall somewhere within their ranges, but it's where within the range that matters. If the FT4 range is 12-22 and your level is 13, you would feel very hypo compared to if your level was at 21.
So, can thyroid really change from hyper, to normal, to hypo within 3 months
Yes, this was explained in my previous reply, you have Hashi's and this is exactly what Hashi's can do.
and especially normal to hypo with 4 days?!
A TSH of 3 is hypo.
Your "normal" FT4/FT3 results from the hospital could be at the bottom their ranges, which would be very similar as your Medichecks results.
If your Medichecks test was done early morning when TSH is highest and your hospital tests done later then that will account for the difference in the TSH level. TSH is highest early morning and lowers throughout the day.
You have no reference ranges for your hospital results and we don't know if both tests were done under the same conditions so at the moment we can't compare the results.
Both tests early morning, medichecks was at 7.30am and hospital at 9am. I don't take any thyroxine so that doesn't apply. Didn't eat /drink before either.
OK so I have my hospital results back now with ranges:
Collected on 27th May (4 days after results posted above in original post)
TSH - 3.75 mIU/L (0.35-4.78)
Free T4 - 13.5 pmol/L (10-20)
Free T3 - 5.4 pmol/L (3.5-6.5)
Ferritin - 8 ug/L (15-250)
It makes me think there is some sort of mix up. I understand what you said about the thyroid results going up and down with hashimotos, but the ferritin?!
So looking at both sets of results, you were more hypo with the Medichecks test with a higher TSH (over range) whereas the hospital one was within range, your Medichecks FT4 was at the very bottom of the range at 12 (12-22) and the hospital one was 35% through range, and with Medicehcks your FT3 was 32% through range and with the hospital it was 65% through range.
Ferritin - 8 ug/L (15-250)
Was anything said about this by the doctor? According to
In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.
If nothing has been said then you need to speak to your doctor urgently. He may want to do a full blood count to see if you have anaemia, but the iron deficiency needs treating and you need regular monitoring.
Vit D:67 nmol/L
This is in the "sufficient" or "adequate" category but doesn't meet the level recommended by the Vit D Society and Grassroots Health which is 100-150nmol/L. Your doctor will be satisfied with this but it would be better higher and if you want to achieve the level recommended then you could supplement with 3,500-4,000iu D3 daily and you will have to buy your own supplement as doctors wont prescribe at this level.
Once you've reached the recommended level then you'll need a maintenance dose to keep it there, which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:
Doctors don't know, because they're not taught much about nutrients, but there are important cofactors needed when taking D3.
D3 aids absorption of calcium from food and Vit K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking D3 as tablets/capsules/softgels, no necessity if using an oral spray.
For D3 I like Doctor's Best D3 softgels, they are an oil based very small softgel which contains just two ingredients - D3 and extra virgin olive oil, a good quality, nice clean supplement which is budget friendly. Some people like BetterYou oral spray but this contains a lot of excipients and works out more expensive.
For Vit K2-MK7 I like Vitabay or Vegavero brands which contain the correct form of K2-MK7 - the "All Trans" form rather than the "Cis" form. The All Trans form is the bioactive form, a bit like methylfolate is the bioactive form of folic acid.
Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.
Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds if taking magnesium as tablets/capsules, no necessity if using topical forms of magnesium.
Dr didn't really say much about the ferritin, asked if I'd used iron supplements before (I said I have, but they didn't increase my ferritin much at all and gave me diarrhoea, so I stopped).
He is going to send me a form for a full iron panel I believe, but I think he meant full blood count.... Nothing ever shows up as abnormal on a fbc for me ever, even with having low ferritin.
I looked into an iron infusion privately a while back because I can't tolerate the tablets and they don't work anyway. But I got scared because the NHS gp said something about it being inherently dangerous. The private company said it wasn't, but I didn't know who to believe so didn't bother.
But...
How can my ferritin be 8 on the 27th May and then 24 on the 1st June.
He is going to send me a form for a full iron panel I believe, but I think he meant full blood count.... Nothing ever shows up as abnormal on a fbc for me ever, even with having low ferritin.
There is an iron panel which tests
Ferritin
Serum Iron
Transferrin saturation %
Total Iron Binding Capacity
and it is different from the full blood count. The full blood count will show if you have anaemia, the iron panel shows if you have iron deficiency. You can have iron deficiency without anaemia.
How can my ferritin be 8 on the 27th May and then 24 on the 1st June.
Were both tests done by the same lab?
You could have eaten some iron rich food before the 1st June test which could have raised your level.
I doubt that it would have risen based on eating something iron rich in a few days because I was in iron tablets for months previously and it barely went up even taking them 3 times a day.
Along with the thyroid results being different and the vit d being different as well. It just doesn't add up. I think one of the labs has had a mix up.
If one of the labs was Medichecks and it was sent to County Pathology, there has been a problem with them and it's resulted in them changing to The Doctor's Laboratory for their testing at the moment. But I can't really comment unless you post the results/ranges from both labs.
Vast majority of Hashimoto’s patients are gluten intolerant but not coeliac
The only way to know if that includes you is to try strictly gluten free diet
Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function with Hashimoto’s can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Presumably you have had negative coeliac test
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Email Thyroid UK for list of recommend thyroid specialist endocrinologists...
NHS and Private
tukadmin@thyroiduk.org
Some people find liquid levothyroxine works better, but usually only prescribed via endocrinologist initially
The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is ALWAYS under 2
When adequately treated, TSH will often be well below one. Most important results are ALWAYS Ft3 followed by Ft4. When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)
Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works
Folate is deficient GP should prescribe folic acid
But
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be more beneficial.This can help keep all B vitamins in balance
Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)
Or Thorne Basic B is another option that contain folate, but is large capsule
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
Most easily tolerated and widely available is Mercury Pharma brand available in 25mcg, 50mcg and 100mcg tablets
But everyone is individual.
Some people love Teva ...many many people can’t tolerate Teva at all
Standard starter dose of levothyroxine is 50mcg
Bloods retested 6-8 weeks after each dose increase
Getting up to high enough dose as fast as tolerated. Getting up over 75mcg is often the hardest step especially if been left far too long on inadequate dose levothyroxine
Getting up to high enough dose as fast as tolerated. Getting up over 75mcg is often the hardest step especially if been left far too long on inadequate dose levothyroxine
What does this mean in practice please? What is actually hard about it?
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
I’ve seen people on here recommend grains of a natural thyroid med?
It would be prescribed, just privately, I’m going to see someone from the list you recommended.
Are there any really good endocrinologists?I was dismissed by the last one I saw, as I felt awful on thyroxine but she couldn’t find any issues. I can’t deal with that again, I need someone who will listen and fix it.
I have emailed Thyroid UK. I’m south of London, but would travel anyway for someone who will actually help, but like you said, they mostly do offer zoom.
Do my results suggest i need T3?
I can see my levels are bad, I just am so scared of taking levo again. I think I need another option. My mental health was awful on levo.
I have a stock of Better You Vit D and Vit B12, I just didn’t find it was actually helping me, and I have real trouble remembering to take it - I’ll start trying to take it again. thanks
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