Hi, this is my first post on this site. I posted on the PA forum as I have low B12.
I had my 2nd B12 injection done in June, they are every 3 months. No loading doses. I seem to feel an improvement in symptoms a couple of weeks or so after the injection has been done; however, even though my next injection isn't due for a little over a month I have been getting some symptoms that are causing me concern?
Periods literally bleeding me dry, dry skin all over my back and face and legs, hair loss, thyroid area painful sometimes, hard stool, loss of appetite, fluctuating weight, nighttime sweats, breathlessness, needing to take in a deep breath sometimes, feeling cold, splitting nails, anxiety, fatigue, early morning awakening. Just wondering if it's more than just a possible B12 issue and that it could be my thyroid? I also had an iron infusion done on Monday and I was really tired and yawning a lot after it, I am wondering if maybe the infusion has unmasked my hypothyroidism? I was diagnosed with the hypothyroidism 6 years ago and I take 125mcg levo.
Thank you for reading
Jo
x
TPO ANTIBODY 607 (<34)
Written by
MckenziiJo
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Have you got any other thyroid test results? TPO is elevated which shows autoimmune thyroid disease, very common to have low nutrient levels and sometimes coexisting autoimmune conditions.
(<25 severe vitamin D deficiency. Patient may need pharmacological preparations
25 - 50 vitamin D deficiency. Supplementation is indicated
50 - 75 vitamin D may be suboptimal, and long-term may lead to clinical effects. Advise on safe sun exposure and diet. Supplementation may be indicated
>75 adequate vitamin D)
I take an oral spray called Better You, it is 3000iu in strength. I have been taking this for about 5 years. I am due a retest for vitamin D this month - as long as the GP agrees to do this since I am confirmed vitamin D deficient and my haematology consultant wanted my level at 75 or more. If not I plan to go private for this provided it's not too expensive.
I supplement vitamin D 3000iu, I use an oral spray called Better You. I have been taking this for about 5 years. My level hasn't improved that much so I would like to up it to 6000iu? This was tested in December 2017, I am due a repeat test this month as I have confirmed vitamin D deficiency.
Vitamin D total 49.9
(<25 severe vitamin D deficiency. Patient may need pharmacological preparations
25 - 50 vitamin D deficiency. Supplementation is indicated
50 - 75 vitamin D may be suboptimal, and long-term may lead to clinical effects. Advise on safe sun exposure and diet. Supplementation may be indicated
>75 adequate vitamin D)
I do take folic acid but I haven't been tested since January 2018, sorry.
Ferritin was 27 (30 - 400) back in April 2018 and I had the iron infusion done a few days ago. I have been asked to have the ferritin retested in 4 weeks time.
As you have Hashimotos, have you looked into improving gut function? SlowDragon has links with lots of advice on how to do this. Increasing vitamin D supplements is a good idea in the meantime. Many people find they have to go totally, strictly gluten free to improve gut function when they have Hashimotos. Good probiotics are also important.
When taking vitamin D the co-factors are magnesium and K2-Mk7. These will help to improve uptake of vitamin D and help to direct calcium to bones and teeth where it is needed. You can take vitamin C with levothyroxine to improve absorption but all other vitamins and minerals should be taken 4 hours apart from levothyroxine.
Hi, I take 125mcg Levothyroxine increased from 100mcg. I haven't looked into improving gut function thoroughly. I buy all sorts of supplements without thinking and probiotics is one of them (I thought I had low stomach acid and not high stomach acid like my GP suspected) but I realised after buying the probiotic that there is only one probiotic enzyme in it - Lactobacillius - forgive me if I didn't spell it right. It came from Holland and Barrett and it wasn't cheap either. I am sure there are probiotics out there with more than one type of enzyme in it. Also bought vitamin E because my hair is always dull as is my skin and nails. I don't know what I was thinking, I kind of feel like I've been chucking my money away!
I have vitamin C here in my box...I tend to use them when I have a cold or the start of a cold so it's really helpful to know that I can use it with Levothyroxine. Thanks
Also magnesium and zinc. Sorry if these aren't necessary.
Zinc 16 (11 - 23) zinc taste test confirmed zinc deficiency because I couldn't taste the zinc tablet upon chewing it.
Magnesium 0.83 (0.70 - 1.00) GP said the magnesium blood test isn't 100% reliable and my level looked a bit low so could do with supplementing perhaps?
Yes, magnesium test is not reliable, however, it's a good idea to supplement. Choose the magnesium supplement that suits you. A skin spray can be a good idea when you have absorption problems as it will bypass your stomach.
Hi you need one more metal testing Copper, it's most likely high and suppressing your zinc and iron, or there's just not enough in your diet, but Copper needs checking. This is in part the cause of the hypothyroidism, plus you have adrenal fatigue based on your TSH being high over 1 and FT3 being low should be 6.0-6.2. Here's why there's a balancing act going on between cortisol and thyroid hormone levels. Zinc suppresses Cortisol and Cortisol suppresses Thyroid hormone, this is part of why you need to keep increasing thyroid meds/levothyroxine. That's why you need to check the Copper too.
The high antibodies suggest a critter of some kind like Candida EBV Lyme etc, most likely effecting the thyroid via a leaky gut, caused by low stomach acid, low healthy bacteria and diet. So the critter needs identifying, sort that out too and things should autocorrect.
As for B12 injections I'd recommend adding in a B Complex too as it usually works with other B vitamins like B6 and B9 hope that helps too, along with the other comments...
Calcium has dropped quite low too, it used to be mid-range now creeping in at the bottom. I am guessing it is linked to vitamin D deficiency so I will need to get this checked by my GP. I am due a medication review this month anyway so it would be ideal timing.
Could be low parathyroid hormone function so check calcium along with PTH. Ensure you eat calcium rich foods at every meal. Gluten can prevent proper calcium absorption. Have you been checked for coeliac disease?
Thank you, no, I have never ever been checked for coeliac disease. If PTH is endocrine related I can ask my endo to check me for it. How amenable he would be to the idea I don't know but it can't hurt to ask! I eat lots of calcium rich foods, I don't understand why it's low but it needs investigating.
So my plan of action is as follows (not sure I've put everything in the right order)
* Get July's thyroid results from endo - he wants my TSH at 2.5 and thyroid hormones in the top of the ranges so I may need an increase based on this fact
* Ask him to check me for calcium and PTH function if he is able to do this
* Get tested for coeliac disease
* Arrange for medication review to check my vitamin D, B12 , ferritin and folate level at the 4 week stage of having the iron infusion (end of July 2018)
* Sort out my next B12 injection
* Start taking any other supplements one by one based on levels and introducing them gradually
* Go gluten free
* Check vitamins again
* Still not feeling great and FT3 still not very high with a high FT4 and TSH between 0.2 - 1.00 I will think about taking T3/NDT/Armour
ONe thing to note is that if you are going to get tested for coeliac disease you should not stop eating gluten until after testing as the tests will only be reliable if you're still eating gluten. Therefore, a good reason to do it soon. Bear in mind that the blood tests alone are not conclusive. You need to be referred to a gastroenterologist for full coeliac investigation. If all ok, then go gluten free anyway due to Hashimotos thyroiditis and antibodies. You do need to know whether you have coeliac disease though as even a minute amount of gluten can be damaging to the gut in that case.
HypoparaUK website have good information about low parathyroid hormone levels. Sounds like your low calcium levels may be due to absorption issues but you can only rule out a parathyroid problem with blood tests. Given the range of low nutrients you have, your doctors need to thoroughly investigate and rule out the obscure as well as the obvious.
I would get tested and checked out before adding in T3 so that you are methodical in your approach and can assess any reactions. Good luck and let us know how you get on. I see SlowDragon has responded so you've got lots of good information now.
Many of us also need higher dose of vitamin D to improve levels, especially if Levo too low and not yet gluten free. Aiming to improve to around 100nmol. It's trial and error what dose each person needs. Once you Improve level, very likely you will need on going maintenance dose to keep it there. Retesting twice yearly via vitamindtest.org.uk
Also read up on importance of magnesium and vitamin K2 Mk7 supplements when taking vitamin D
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels. Low vitamin levels affect Thyroid hormone working
Obviously your levels are dire so gut is badly affected
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps 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
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"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 the articles from Thyroid UK email print it and highlight question 6 to show your doctor please email Dionne at
tukadmin@thyroiduk.org
Also request list of recommended thyroid specialists, some will prescribe T3
Getting vitamins optimal and Levothyroxine dose high enough are first steps. Then very likely gluten free diet essential
If FT3 still remains low then like many with Hashimoto's you may need addition of small dose of T3
Professor Toft recent article saying, T3 may be necessary for many
Thank you, my endo is not the most amenable of consultants when it comes to things like T3, even NDT or Armour - it has been suggested by the GP that I would benefit from T3. My way of thinking is to maybe - once things are sorted - to buy T3 from abroad and get my GP to monitor me on it and just not say anything to the endo. I would then be living with the secret of taking something he does not approve of but if he still refuses to give me T3 based on the fact of being on a higher dose of Levothyroxine with a good FT4 and a low FT3 I would then have to think about what would be right for me and not for him.
Probably a silly question but is the vitamin d spray 3000 a spray or 1000 a spray so daily dose for 3000 is 3 sprays? Just hubbie thought he was taking 3000 as the container said 3000 but was only doing 1 spray a day so only taking 1000... Em, hope that makes sense lol. Just thought I'd check as your d is still so low.
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