Not sure about thyroxine for you, specially if you have indeed AFS.
I have an idea why low vit. D but please read below:
Problems with absorption, assimilation, resistance to vitamin D.
--General Inflammation and G/I inflammation(Very common with low thyroid sufferers).
--Low fat diet or issues with fat digestion also relating to not enough cholesterol for hormonal AND vitamin D synthesis ( vit D is fat soluble)
-- Obesity (not your issue!)
--some drugs ( not your issue)
-- Vitamin D Receptor (VDR) gene mutation ( genetic /autoimmune) or decreased VDR expression, common with Hashimoto's sufferers who in this case need increased levels of D, above and beyond normal serum levels.
Hope this helps.
I'm sorry you're going through all this. From what I've heard, Levothyroxine doesn't work for everyone. Even if your labs look normal, it doesn't mean that you're thyroid symptoms are fixed. Some people do better on thyroid medications that combine T3, T4 and other T hormones (e.g. Armour). Also, your TSH seems high.
Thank you ever so much for your understanding. :)
I have found that when I took myself off the Levothyroxine very briefly my FT3 rose and when I was put back on it it dropped again. I am very sure that means I need T3.
I am hoping my endocrinologist will consider a trial period of Armour or T3/T4.
I use sublingual B12 spray (4 sprays or 2000mcg daily) for autoimmune pernicious anaemia. I use the cyanocobalamin form but I have no problems converting cyanocobalmin to methylcobalamin in the liver. If you smoke or have other liver issues then try methylcobalamin. If you are on methycobalamin then try increasing the dosage. If that doesn't help then try the other option is B12 injections. I also have Hashimoto's thyroiditis, vitiligo and alopecia areta.
The following info is from the book "The Everything Guide To Thyroid Disease" by Theodore C. Friedman, MD, PhD and Winnie Yu Scherer:
"Although the majority of people with Hashimoto's will not develop any other disorders, it's important to know what some of these autoimmune conditions are in case you do start to experience symptoms. Keep in mind, too, that you may be more likely to develop Hashimoto's if you have one of these other conditions.
Type 1 Diabetes
Systematic Lupus Erthematosus (SLE)
Inflammatory Bowel Disease
Multiple Sclerosis (MS)"
Thanks for reply.
I have no liver problems or smoke but I was under the impression that the cyanocobalmin was not meant to be taken. So it is safe to take? I have bought a supplement which contains cyanocobalmin and another that contains methylcobalmin, is it safe to take both and at the same time?
I have no diabetes, but it is in my family and I tested normal for it.
Not sure if I have vitiligo but I have white patches on my arms and legs, is that vitiligo?
Celiac disease was ruled out with IGA antibody testing but I have been told on here and by my nutritionist I have gluten and dairy intolerance.
SLE - I don't think I have this but I did test positive for ANA antibodies but no inflammatory markers. So this result was then discounted.
Rheumatoid arthritis - rheumatoid factor was normal.
Sjogren's syndrome - I get dry eyes and dry mouth but could be the Hashimoto's so not sure.
MS - my mum has MS primary progressive and a recent MRI on my head/neck and one on my spine has shown no lesions or abnormalities.
I've read that about cyanocobalamin. However I've use this for 5 years and it works brillantly so I take what is said about this type of B12 with a grain of salt. ANA is positive for 47% of Hashimoto's thyroiditis patients so I read. My ANA was negative. I have a lactose intolerance but I can still eat cheese (trace amounts of lactose which isn't a problem). I don't have a gluten intolerance though. I have read wrinkles on the fingertips is a sign of gluten intolerance actually. My fingertips are smooth. :)
Thanks for replying. Maybe taking the cyanocobalmin with the methylcobalmin is not a bad idea then.
Wrinkles on the fingertips is a sign of gluten intolerance? Wow, that's a new one. I have some of those. Thanks for letting me know about that. :)
Hmm, B12 forms, this is interesting.
My cousin is a dental surgeon and peridontist, trained, studied and worked in Sweden.
The SDA recommended always the exclusive use of methylocobalamin, when dealing with patients having their mercury amalgams removed (high risk of excess mercury exposure.)
Personally, I would not take cyanocobalamin, for the simple reason that it must be converted into an active form, possibly putting an unnecessary burden on the nervous system... and don't like the sound of it! lol!
I like to err on the side of caution.
Besides, considering the small difference in cost, why should I take any chances with my BBB and nervous tissues, as usually any ill effects, proven or not (that's another chapter on its own!) would be extremely difficult to connect to the cyanocobalamin intake. I don't have any issues with methylocobalamin intake and since I have no symptoms at all relating to nervous system function, I'm sticking with it.
Discuss this with your doctor. Yeah, right!!! Good luck,lol
Elevated ANA's would result from elevated TPO and/or Tg ABs, but up to 1:160 most doctors would consider this as negative, even if it positive, due to they insignificant (and non-specific) diagnostic value at the lower titres.
The thing to note though is that not each & every patient should be treated as a typical medical textbook case.
The cookie cutter approach turns me totally off!
Enough said on this. Lol!
Thanks for this.
Sorry, just so I have gotten this right - cyanocobalamin is not recommended due to high risk of mercury exposure? And by taking both forms of B12 - the methylcobalamin and the cyanocobalmin - is not a way of getting the benefit of better B12 levels? Forgive me for sounding dense but I know very little about B12. All I know is that it is taken sublingually and since I have acquired this iron supplement that contains the cyanocobalamin does that mean it's harmful? If so it makes me wonder why this ingredient is present in a supplement to support the immune system!
Sorry, I should have added in my question - the endo I saw on Friday remarked my B12 level is fine as well as the folate. Some fellow thyroid friends question this consultant's take on the results. I know my B12 ought to at least be 500 but they say my folate ought to be at least 11 or so. What I am confused about is what raised my folate in the first instance..can that happen by itself?
The endo suggested I continue taking the thyroxine at the normal dose - but my doctor wants to discuss my thyroid results with me since the TSH has risen but my thyroxine levels are now looking very good - possibly a conversion issue? Or it needs the iron to regulate the thyroxine production? I'm taking stabs in the dark really as I really want to know what my doctor has got planned for me during the tele-consult..
The elevated ANAs were done in January this year and the last time the Anti TPO levels were elevated at 41 was back in December. Now, however, they have dropped back into negative range, but only just, at 33.5 with the negative range below 34. Unless there is some delay between when the ANAs elevate and the Anti TPO levels then respond by elevating...
I have had more questionable symptoms today - I have a bit of a hand tremor in one hand and I cannot tolerate the heat very well now. I am still on the 100mcg Levothyroxine. Also I have an active bladder infection (prescribed antibiotics which I have not taken as I am not symptomatic) and someone I know who knows a fair bit about autoimmune stuff said I more than likely had elevated leukocytes in my urine due to the white blood cells being removed from my system due to the Hashimoto's. It sounds believable..
Labs are just that. Since doctors started treating patients mainly according to labs, it resulted in a new dangerous dependency (the cookie cutter approach) were some subclinical values getting totally ignored, yet other ones getting treated too aggressively.
The controversy is when certain values are off (higher or lower than the so-called normal ranges) due to underlying undetected factors, so any treatment is likely to fail, if these are not addressed.
Folate increased on its own could be due to pernicious anemia, or falsely increased to normal in some patients with severe iron deficiency
(ref. General Practice Notebook, UK)
Iron intake may actual interfere with thyroxine absorption, if taken at the same time. Same with calcium and that goes for supplements and foods containing these 2 minerals.
Probably before breakfast would be the best time.
Your supplement with cyanocobalamin, contains this form of B12 because of the lower cost and since there's no rules against its use, manufacturers will continue selling it. How many people don't even know what they're taking most of the time.
I think the sellers have analyzed in depth our consuming & buying decision processes and are playing the odds to their advantage, as long as it is safe and legal to do so and they don't get into any trouble.
I suggest you finish what you have left and you may consider a different one containing methylocobalamin, if you want to feel re-assured there will be less potential issues.
Low D may cause lower B12 and B complex, as vitamin D can affect the
G/I system and the ability to absorb and assimilate certain nutrients and vitamins. I can explain the association another time if you want.
Oh , by the way all the blood cells red or white have vitamin D receptors
and low D levels can contribute to anemia and autoimimmune disease,
as well. White blood cells could get dysregulated & trigger auto-immunity, which would perhaps explain the raised levels in the urine.
Do you know why your D levels were low in the past?
Are you presently on any D3 supplementation?
Sorry if you already posted this information. If yes, do you know of any
D resistance issues?
Try some cranberry juice for your bladder infection to see if that helps.
Your TPO levels might continue to fluctuate as your gliadin (from gluten)
levels are gradually decreasing, however, there are other variables as well.
I've read methylcobalamin can help detox mercury so that makes sense when removing mercury amalgams. Selenium also detoxes mercury too actually and may lower TPO antibodies. I tried this myself eating brazil nuts (high in selenium) and my TPO antibodies dropped 80IU in 6 months. My mother's TPO antibodies dropped the same amount in the same time too. Btw, urinary tract infection is a cause of elevated leukocytes in urine. I love home tests. Wrinkled fingers eh? Who knew. :)
Hi thanks for your reply.
I haven't been taking my thyroxine before breakfast but I do keep it away from calcium containing products. I take the thyroxine in the early evening but what benefit this is to me I have no idea since I feel no different - if anything I have felt worse over the past few days.
I haven't started the supplement with the cyanocobolamin in it yet.
I have no idea why my vitamin D levels were low in the past.
I was on vitamin D3 supplementation but I stopped a few months ago due to some people at the support meetings telling me to "treat adrenal symptoms first, then thyroid". and then I stopped the thyroid medication and then in the confusion stopped the D3 medication when my ACTH test was negative. And then I was in limbo for 3 months and unmedicated. So my doctor had to intervene by putting me back onto the thyroxine and as a result I never put myself back on the vitamin D3.
I don't know of any D resistance issues - what would they be?
Thanks for reply.
I knew nuts contained selenium and I did eat some Brazil nuts in the past. I am wondering if that would have dropped the Anti TPO levels from 84 to 41 and then from 41 to 33.5. Just a thought..
Hi Niko, yes this helps lots.
I really really need to get an adrenal test done if I indeed have adrenal fatigue syndrome.
My belief that I do have adrenal fatigue syndrome is hinging on the fact that, since I have taken and stopped and retaken the thyroxine my symptoms are much worse:
May 2013 - started the thyroxine and the only things that improved were my eye puffiness and my periods becoming brighter in colour but not in intensity or consistency.
Nov 2013 - briefly stopped the thyroxine when I was told of "treat adrenal first, then thyroid" especially since I am Hashimoto's and have no outward clinical signs of being Hashimoto's - no weight gain, puffy face or hair loss.
Also this was when I started to look into taking T3 medication and I settled on the idea of making my results hypothyroid to try and get a true picture of what an abnormal FT3 should look like. My FT3 was normal but high. After this I went back onto the thyroxine.
Mar 2014 - I was still taking the thyroxine at the time of the blood test done this month but my FT3 had lowered and my FT4 was only MARGINALLY higher than the result in December last year (thyroid hormone results were never done in Jan or Feb due to normal TSH but I know why that is!) I took myself off the thyroxine in preparation for the endo appointment so that she could see from the private blood test I had done that there is a problem with conversion.
May 2014 - I went back onto the thyroxine after my attempt to get a trial course of T3 and when my attempt to conduct the adrenal saliva test failed.
It could of been the selenium. I've seen studies that show thyroxine may also lower antibodies too.
I had severe adrenal fatigue twice. I talked about this on another answer of mine along with the three adrenal fatigue home tests. I knew I had to ride out the symptoms of untreated unadrenals (had to take thyroxine immediately due to severe bradypnea) but I had no idea how bad it was going to be - being hit with a mac truck and drugged at the same time might describe it. It took 7 months for my white line to go away that time. That makes sense when you read the Sergent's Adrenal White Line test. :)
Thanks for reply.
Sorry, I have not been taking any selenium. The only things that do contain selenium that I have been consuming are almond milk and some mushrooms but surely that could not be enough to lower the antibodies. Unless they wax and wane anyway..I'll have a look at the Sergent's Adrenal White Line Test - thanks for giving me the link to look at. :)
I did the following tests you recommended.
TEST 1 Adrenal white line - line drawn across tummy stayed white and only went red if I rubbed it off
TEST 2 Iris contraction test - pupil wavered between relaxation and
contraction when light was shone into eyes for 10-30 seconds before
TEST 3 FOR postural hypotension - uncertain
Sitting: 109/68, heart rate 49
Lying down: 117/74, heart rate 57
Standing up: 118/81, heart rate 70
Awaiting new cortisol saliva results.