I a 40 year old female with hashimotos and I’ve been on levo (100 mcg) for 6 months but haven’t noticed any difference. In particular I’ve had no improvement with my energy or brain fog despite my levels returning to normal.
For reference, I’ve also looked into other aspects of my life such as reducing stress, getting more sleep, doing more exercise, drinking more water and improving my diet. I’ve been taking a good quality vitamin and had an allergy and intolerance test, which has uncovered several potential culprits. This has meant doing an elimination diet for 3 months (which I’m near the end of).
I’ve spoken to my doctor about the fatigue and she has suggested it could be stress, but did a blood test to check the liver / kidneys just to make sure (which I’m still awaiting the results).
It’s been suggested to me that I should be tested for coeliac disease. However, I want to wait until I have fully completed my elimination diet, as I’ll need to eat gluten for 6 weeks before any test.
I’m just wondering if there’s anything else I should be doing / testing for?
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My GP tested my B12 4 months ago, I’m not sure about any other vitamins. Is it common to get these tested on the NHS? I’ll ask about vitamin D, folate and ferritin.
Good to know about the vitamins… I don’t normally take them, it was due to doing the elimination diet. You’re right, Bio Care, Adult Multivitamins & Minerals contains Iodine 50ug | biocare.co.uk/adult-multivi... Should I stop?
My last test was at 9:30. I’d taken my medication and eaten breakfast (an hour later). Should I have waited to eat / take my levo?
I’m vegan so have specifically asked for TEVA which is the only brand I’ve tried.
Results: May 22, TSH level 0.62 miu/L (previously in Feb 22, before medication / free T4 level 7.3 pmol/L / TSH level 23.2 miu/L)
They haven’t tested for Coeliac Disease as far as I’m aware (will check).
If you tested that late after taking your meds and eating/drinking then the test is invalid. See if you can get tested again, in the meantime you need to supplement B12, that result is far too low. I like jarrows methylfolate 5000iu.
Click on "Read the list of available tests" and on page 3 of the pdf you'll see
Urine Iodine Test:
Specimen requirements: Urine
Cost: £71.00
Order Code: END25
Turnaround time: 5 - 10 days
Iodine is an essential trace element, vital for healthy thyroid function. Adequate levels are required to enable the production of T3 and T4 thyroid hormones, whilst also being required in other areas of health.
Deficiencies can lead to impaired heat and energy production, mental function and slow metabolism. Urine iodine is one of the best measures of iodine status. This test is not performed as a loading test, but can be used to establish existing levels or to monitor iodine supplementation.
Get retested, early morning, ideally before 9am and last dose levothyroxine 24 hours before test
Just drinking water between waking and doing the test
As mistydog says, B12 is too low and on plant based diet you will need daily vitamin B complex and daily separate B12 as well
A good quality daily vitamin B complex. One with folate in, not folic acid. This can help keep all B vitamins in balance and will help improve B12 levels too
Thorne Basic B or Jarrow B Right are recommended options that contains folate, but both are large capsules. (You can tip powder out if can’t swallow 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
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months.
once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to stop the B12 and just carry on with the B Complex.
But as a vegan you may need to continue separate B12
Look at the link posted by SD about B12 Deficiency signs and symptoms - the list of neurological ones come first. 500+ is a level considered enough to prevent cognitive decline. Japanese range starts at 500.
Due to surgery the Terminal Ileum was removed almost 50 years ago and my B12 was about the same as yours for many years. Sadly I did not know B12 was metabolised in the Terminal Ileum - so I live with the consequences. I now self-inject weekly. GP knowledge of B12 and other vitals is mostly poor.
Thanks for sharing this. I’m so glad I reached out to this community as I had know idea that I had any B12 issues. I’m definitely going to do something about it now for sure. Thanks!
As I had to speak to my GP anyway to review my previous test results, I thought I'd mention some of your suggestions, including supplementing B12 and testing for iodine, folate, ferritin and coeliac, and it didn't go down too well. Although she said she'd happily test vitamin D, but I'd given up at that point and said don't bother. 🤦♀️
So going forward, I'm going to look into B vitamins and buy these at the weekend and see how that goes. Do you know how long it would take to feel better, if that is the main issue?
According to the CoeliacUK, private coeliac testing isn't recommend for various reasons (too long to list here). So, once I've completed my elimination diet and am at the stage of being able to eat gluten again for 6 weeks, I'll go back to the surgery and speak to another doctor. If need be, I'll test privately for everything else.
I'm wondering if refusing to test for coeliac disease is common with GPs in the UK? Even when I said it was the Nice guidelines, she was quite adamant and shut me down. Has anyone been successful with getting their GP to test this? I'd really like to rule it out.
FYI I’ve added some recent test results to the end of the messages…
I’ve read that a gluten free diet is beneficial and am feeling a lot better avoiding it on my elimination diet. Although I have been eating trace amounts and have cut out other food groups too so can’t confirm it just that. It’s just that long term, it’s very restrictive for me as I’m not only vegan, but also may have to avoid / reduce yeast, soy and rice too, due to intolerances. Hence why the coeliac test could potentially give me more freedom. Anyway I’m kind of jumping ahead of myself as I can’t do anything until I start eating gluten again like you say.
Definitely taking the Bvits
May just do the vitD privately, so thanks for the link.
Licorice tea and red ginseng can support the adrenals and mitochondria if they don't disagree with you. Perhaps you should find out what your thyroid levels are first. Your FT4 and FT3 should be over half of the range so insist on seeing them.
Ooh thanks, I'll check those out. Correct me if I'm wrong but as far as I'm aware the NHS typically only test TSH levels once you've been diagnosed and are on medication. This probably means I'd have to go private which I can't afford right now.
You've been on Levo for six months and they haven't tested at the very least FT4? And then to see whether it is converting to FT3.? This is important. You should have had two or three tests by now.
What worked for me was going onto Natural Thyroid Hormone, self-injecting B12 (even though they said that my levels were "normal", and probiotics *Water Kefir and live yoghurt (both made at home). I had been meditating for decades, but added some yoga. I changed my sleeping habit and now go to bed at 21:00 and get up between 04: and 04:30. Adequate exercise, but not overdoing things.
Interesting, I'll bear that in mind, thanks. Is natural thyroid hormone vegan? I'm going to look into B12, although I'm not sure how I'd go on with self injecting 😬 I have a yeast intolerance so not sure I can take probiotics... will check that out too. Thanks for your reply!
Although essentially we are "all the same" we also all have our unique "constitutions" e.g. some people don't tolerate the onion family (a great source of inulin).
Stress also plays havoc with the microbiome - well done for taking action to reduce yours.
The gut is also called "The second brain) - neuroendocrine system. Actually I think the gut rules the roost
I'd suggest that you have a full thyroid test...Test before 9am and an hour before food and drinks
TSH, FT4, FT3, vit D, vit B12, folate, ferritin,
You have already tested positive for Hashis ( high thyroid antibodies) which can cause levels to fluctuate
As the active thyroid hormone, FT3 is the most important lab
Do you know your FT3 level?
I'd guess yours is low
Because the thyroid hormones T3 and T4 control cellular metabolism throughout the body, when there is not enough of them for any reason, this metabolic function slows and becomes impaired.
If metabolism is slow we are tired...amongst other issues.
Do you have a weight problems?
Slow metabolism can cause weight gain.
If FT3/T3 is low then health suffers
Both Frees should be approaching 75% through their respective reference ranges with the caveat that we are all different so no hard rules exist but it's a good guide.
Hashi's is causing your levels to fluctuate...gluten free often helps
despite my levels returning to normal.
" normal" means nothing...what you are aiming for is to have your levels at specific points in the ref range where you feel well
Medics tend to use " normal" if your labs fall within the ref range and that is not good enough.
Currently you do not have adequate test results in order to extrapolate thyroid hormone deficiency
Key nutrients are vital but they must work in conjunction with thyroid hormone levels....FT4 and FT3
Sadly too often patients are left unwell because GPs rely on the level of TSH for monitoring. TSH is a pituitary hormone, not a thyroid hormone...it reflects the overall level of thyroid hormones but not the level of each one
Your TSH has dropped following the addition of levo....it's a start but not the whole story.
Hope you feel better soon and manage to have a full thyroid test
You're not wrong. It's like pulling teeth talking to my GP (I've tried a couple now and I get the same response speaking to them). I have requested the full thyroid test but when I get the results it's clear they haven't done them. I did read somewhere that even if a doctor requests the full test the labs refuse (not sure how true that is though!). I may need to have tests done privately but I can't really afford it right now.
Thanks for all the other info, I'll have to come back to this thread and go through all the suggestions. Thanks for your input!
As I had to speak to my GP anyway to review my previous test results, I thought I'd mention some of your suggestions, including supplementing B12 and testing for iodine, folate, ferritin and coeliac, and it didn't go down too well. Although she said she'd happily test vitamin D, but I'd given up at that point and said don't bother. 🤦♀️
So going forward, I'm going to look into B vitamins and buy these at the weekend and see how that goes. Do you know how long it would take to feel better, if that is the main issue?
According to the CoeliacUK, private coeliac testing isn't recommend for various reasons (too long to list here). So, once I've completed my elimination diet and am at the stage of being able to eat gluten again for 6 weeks, I'll go back to the surgery and speak to another doctor. If need be, I'll test privately for everything else.
I'm wondering if refusing to test for coeliac disease is common with GPs in the UK? Even when I said it was the Nice guidelines, she was quite adamant and shut me down. Has anyone been successful with getting their GP to test this? I'd really like to rule it out.
Anyway, here are the most recent test results... I'm wondering if there are any issues here?
///
I re-tested my thyroid privately - this was done in the morning, before taking my meds. 04.07.22
• Thyroid
2.51 mu/L TSH levels normal (normal range 0.27 - 4.2 mU/L)
15.3 pmol/L FT4 levels normal (normal range 12 - 22 pmol/L)
4 pmol/L FT3 levels normal (normal range 3.1 - 6.8 pmol/L)
For ref. my previous TSH test from the GP (taken later in the morning after taking my meds) was on 12.05.22
Serum TSH level 0.62 miu/L [0.35 - 4.94]
///
These were the results from my GP (which were apparently all okay). 16.06.22
• Urea and electrolytes
Serum sodium level 141 mmol/L [133.0 - 146.0]
Serum potassium level 4.4 mmol/L [3.5 - 5.3]
Serum creatinine level 66 umol/L [50.0 - 98.0]
eGFR using creatinine (CKD-EPI) per 1.73 square metres > 90 ml/min/1.73m^2
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