Hi, I’m new to the group and would really appreciate your comments.
There is a family background of underactive thyroid but I was diagnosed with overactive in Dec2012 with a multi nodule thyroid. I took Carbimazole for 3 months and had an FNA on the prominent nodule in each lobe. The right came back benign, the left had insufficient cells but the endocrinologist was happy with the appearance etc., and no further tests were carried out.
I have been well until last October when I went down with a virus which took 3/4 weeks to get over, this resurfaced at the end of the year and was followed by a very bad cold in Feb and then a bout of Shingles in April. I am now suffering the symptoms of an underactive thyroid, my energy levels have fallen off a cliff, I have pains in my hands, wrists and my right groin plus struggling with my weight. For this reason whilst on holiday in Turkey I had a check which included blood tests and a thyroid scan. The doctor said I should get my nodules retested and that I had Hashimotos despite my TSH being in the normal range as I had anti bodies. The results were
TSH 2.48 mU/L. Range 0.35-4.94
ANTI TPI (ANTI-M) 17.48. IU/mL
Range 0.5.61
This does not look like the anti body tests that I have seen discussed by others.
My vitamin D was also low at 26.5 ng/mL range 50-100
I have been to see my GP who agreed from the new measurements that the nodules (as expected) had grown and he is referring back to the Endocrinologist so that they can be investigated although this appointment is not until the end of October. A further blood test was carried out and these results are,
TSH 2.2 mU/L range 0.35-5.50
Free T4 14.4 pmol/L range 9. - 22.70
Vit B12 216 ngL range 211. -922
So my TSH and Free T4 are within range and do T3 not done nor antibodies.
So my question is do I have Hashimotos or a Vitamin Deficiency or both. I have a telephone conversation with my GP next week to discuss my B12, he has already told me to take 1000 of Vit D a day. I am using the Better You oral spray. I would like your views what tests I should be asking for, I doubt that he will do the thyroid again, given the results. I know I have to take supplements is there a brand you would recommend.
I look forward to your views as so many of you are so knowledgeable on this subject of which I know nothing.
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Sue394
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Your range for the antibodies is a bit peculiar. You can't have two decimal points.
But, if the Turkish doctor said you have Hashi's, then you have Hashi's. It often starts with a 'hyper' episode, and your doctor at that time should have tested your antibodies!
Your TSH says your thyroid is struggling. But, what time of day were these two tests done? And were they fasting? Your thyroid levels do need to be tested frequently - how much do you know about Hashi's?
Your B12 is, of course, very low. And you should be tested for Pernicious Anemia, with results that low. What was your vit D result? Because that's not a very high dose you're taking, and not likely to do much good.
So, what is causing your symptoms? Well, hypo symptoms can manifest long before the blood tests confirm hypo. And, there's the possibility that the antibodies themselves are causing symptoms. Plus the low B12 and vit D... Not really surprising you don't feel well. But, start by sorting out your nutrients - have you had your ferritin and folate tested?
There was a typo on the anti body test it should have read
ANTI TPO (ANTI-M) and it definitely showed 17.48. This doesn’t seem to be the sam e test taken in the U.K. should I have it taken here. One thing I forgot to mention is my temperature has dropped and it is around 35.5 I didn’t believe it at first and went and got another thermometer. I only know about Hashimotost from the comments in this forum and info on google.
So it's definitely "anti TPO" and not "anti TPI" mentioned in your opening post? If so then that is anti Thyroid Peroxidase which is the antibody test used here, and your result is over range so confirms Hashi's so the usual advice about a strict gluten free diet and supplementing with selenium l-selenomethionine 200mcg daily is relelvant.
My vitamin D was also low at 26.5 ng/mL range 50-100
With that unit of measurement the level recommended by the Vit D Council, the Vit D Society and Grassroots Health is 40-60ng/ml. If you have it tested here in the UK the units will probably be nmol/L and the recommended level in that case would be 100-150nmol/L. To convert lng/ml to nmol/L you multiply by 2.5 so your level is 66.25nmol/L.
So you need to supplement to reach the recommended level. As you have Hashi's it's recommended to use an oral spray for best absorption, eg BetterYou. They do a 3000iu dose so I would suggest you use that dose for 3 months then retest. Once you've reached the recommended level then you'll need a maintenance dose 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 City Assays vitamindtest.org.uk/
There are important cofactors needed when taking D3 as recommended by the Vit D Council -
D3 aids absorption of calcium from food and 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.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.
Magnesium helps D3 to work and 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
BetterYou do a combined D3/K2-mk7 spray which you may want to consider to save buying a separate K2- mk7 supplement.
Vit B12 216 ngL range 211. -922
This is extremely low and you should check to see if you have any signs of B12 deficiency b12deficiency.info/signs-an... and get your GP to test for B12 deficiency/pernicious anaemia. You may need B12 injections.
As Folate and B12 work together, you need your folate testing also. If you need a supplement, don't start taking it until further tests for B12 have been carried out as it can mask signs of B12 deficiency.
Ferritin is also very important and needs to be half way through it's range. Low ferritin means that thyroid hormone can't work properly, so you need that testing too.
Thank you Seaside Susie, for your advice, Looks as if I have some shopping to do. I noticed from other posts that many people use Amazon for vitamins would you recommend them and if so any particular supplier, feel free to pm me if this info is not suitable for an open forum.
The test was definitely TPO not TPI that was a typo.
I will ask my GP for the blood test for Pernicious Anaemia, Folate and Ferritin. I have taken a couple of complex B vitamin pills but think I will stop taking these in case they skew any further blood tests.
My doctor has already given me a form to have Vit D retested at the beginning of October I assume if I have to supplement B12 he will arrange for me to be retested for both.
I do wonder how these vitamins could be so low as we eat a very balanced diet of protein, dairy and vegetables every day. We do not eat processed food.
I buy some of my supplements from Amazon, but the majority I get from other suppliers.
I don't use BetterYou spray, but from what I can see Bodykind (I use them, good company) is the cheapest at the moment at £7.46 for 12ml (if you spend £15 for the free delivery) bodykind.com/product/10696-...
If you want to use just the D3 spray and take separate K2-MK7 supplement, these aren't cheap so go for a good quality one. I use Healthy Origins as it only contains 2 ingredients - the K2 and organic extra virgin olive oil to aid absorption (it is fat soluble so needs fat to be absorbed) bigvits.co.uk/product.php?p...
For the magnesium, you'll have to decide which form to take. I use magnesium citrate in powder form (I need it for help with bowels) and mix it with orange juice. If that is the form you want then it's usually cheapest at Amazon (although their prices do change) amazon.co.uk/Natural-Vitali...
If you end up on B12 injections then further testing isn't done from what I understand.
If/when you go back onto a B Complex, you could look at Igennus Super B, contains the active form of ingredients and as your folate level isn't too bad you would probably only need 1 tablet bodykind.com/product/8365-i... - it's 9p more than Amazon but would make up the amount needed for free delivery from that company.
The Hashi's can have an effect on gut and absorption and may have contributed to low levels, it's pretty common with Hashi's.
I forgot to mention in my previous repy, regarding the Hashi's many members have found that a strictly gluten free diet can help reduce the antibodies, as can supplementing with selenium l-selenomethionine 200mcg daily. Keeping TSH suppressed can also help.
If you want a suggestion for selenium, I use a Food State one (yeast-bound) from Cytoplan cytoplan.co.uk/selenium (on offer this month and frequently throughout theyear). It is a nice small tablet with no odour (many selenium supplements have an unpleasant odour). Although it is yeast bound it says it is suitable for people with Candida and yeast sensitivities.
Don't start all supplements at the same time. Start with one, give it 2 weeks, if no reaction then add the next one, give it 2 weeks, add the next one, etc. That way if there is a reaction you will know what caused it.
With Hashimoto's, it's not what we eat, but what our stomach can absorb. Gut function is very often badly affected. Low stomach acid is very common as is gluten intolerance
Low vitamins are the result.
Very few GP's or endocrinologists are really aware just how interlinked the gut and thyroid disease can be
Read up as much as you can
Only add one supplement at a time or make one change at a time. Leave at least a fortnight to assess any changes before considering anything else.
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 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! But, there are things the patient can do for him/herself.
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, and can often reduce the antibodies.
b) take selenium. This not only reduces 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.
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