I’m a 59 year old woman suffering with Hashimoto Thyroiditis, Fibromyalgia, osteoarthritis and osteoporosis. At my wits end regarding pain and exhaustion. Taking ‘Super B complex with calcium’ and vit DK2 spray daily. Meds prescribed incl: 100g ‘Accord’ levothyroxine ,50mg diclofenac sodium, 15mg lansoprazole (to mitigate gerd) 1mg Sandrena (HRT)
Have various issues including numbness in feet and hands, various pains (feet, knee, hips, back and neck) Morton’s neuroma in feet, heberden’s nodes in fingers. The pain in my neck, spondylosis, according to my doctor has been ongoing for last 2 months. Along with the pain the most debilitating is the feeling of exhaustion.
Any help regarding blood results, should I seek private testing? Doctor said I would not qualify to see an endocrinologist to assist with the various symptoms and managing my diagnosis - I can’t take any nerve blocking medication as the side effects are unmanageable even after a couple of months trial.
attached is my bloods if anyone could recommend any help please
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Mona1966
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Hi, I feel your pain, I can't advise on your blood results as my knowledge is beginner. Have you looked at the ingrediencies of all your medication as for some people have problems with the fillers, like you I have several conditions. Last week I checked out all my medications and to my horror I found a filler l suspect I have a problem with in some of them. For 6 months I never thought to check all my other medications. The exhaustion and depression is the one I struggle most with. The pain although is fairly bad I seem to be able to manage.
For me it's some of the E numbers they use and some people have a problem with Mannitol and I'm sure others will have suggestions. I'm 60 this year and E numbers make me hyper like a jumping jack in a box. Magnesium stearate is another.
Your thyroid results are both too late in the day when TSH is dropping, did you withhold your levo until after the test? Ideally pre 9am, fasted, 24 hours after last dose
B12 and folate are low are you taking 1 or 2 tablets I'm hoping you mean Igennus Super B with Vit C rather than calcium?
With raised cholesterol I'd hazard a guess that you aren't converting your levothyroxine well into the active fT3 form.... Have you ever had a full thyroid panel done to see how well you convert?
Lansoprazole... do you really have too much acid or too little? Hypo's have too little and food tends to sit undigested in the stomach which can back up... do you keep it well away from levo dose?
Thanks, twice I've tried to come off omeprazole unsuccessful due to bad withdrawal symptoms verybad headaches. I was prescribed due to another medication I am taking. I do get acid but only when I'm stressed. I will definitely give this some thought.
I take my levo first thing in the morning (so would be 24 hours ingested prior to test) take this along with Lansoprazole and HRT gel. Dr advised it didn't matter timing of ingesting lansoprazole.
Vitamins I take are 'Super B-complex with Vit C' from Kirkland (Costco) and Vit D+K oral spray from 'BetterYou. Only take 1 B vit per day as advised.
Cholesterol levels tested as I had a brain scan and neurologist picked up white matter lesions - considerably more than acceptable (?) for my age. She had ruled out that I had had a stroke.
Not too sure if full thyroid panel done.
LansoprazoIe was prescribed when I suffered from symptoms including pain in upper chest (with shooting pains that sometimes feel like heart pain) and pain behind my right scapula - I feel it may be GERD.
I will speak to my pharmacist with regards to timings for taking various meds.
Finally found a clear picture of this B Complex... think I'd put it in the bin it doesn't have great forms of the important things and contains mannitol and many other excipients 😕 and looking at your results it certainly isn't doing much for you!
Here's a link to some better ones, scroll right to the bottom for a clearer table...
Are you taking levothyroxine as far away from PPI as possible
So for example take PPI with breakfast and levothyroxine at bedtime
Taking ‘Super B complex with calcium’
Which is this exactly
Suggest you get better quality supplements as follows
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement
A week later add a separate vitamin B Complex
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find they need two and/or may need separate methyl folate couple times a week
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 if last test result serum B12 was below 500 or active B12 (private test) under 70
Lansoprazole needs to be 4 hours away from Levothyroxine
Super B-complex with Vit C' from Kirkland Never come across these could you add a picture of the label listing full ingredients as I can only find fuzzy ones online
(with shooting pains that sometimes feel like heart pain) and pain behind my right scapula - I feel it may be GERD. Sounds more like gallbladder? Has the Lansoprazole helped?
High cholesterol linked to low fT3 so if you've never tested I suggest this is a priority
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
Was test early morning and last dose levothyroxine 24 hours before test
Test doesn’t tell us much as there’s no Ft3 result
You have Hashimoto’s
Have you had coeliac blood test
If not get tested via GP as per NICE guidelines BEFORE trialing strictly gluten free diet
Do you also have arthritis. This may improve on GF diet too
Poor gut function 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.
You don’t need any obvious gut issues …..can still see significant improvements
So a trial of strictly gluten free diet is always worth doing
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to 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 may slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first as per NICE Guidelines
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.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
With loads of vegan dairy alternatives these days it’s not as difficult as in the past
suggest you retest thyroid and vitamin levels privately in 2 -3 months after working on improving low vitamin levels and going strictly gluten free
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Oh wow! thank you for all the info and links. I actually bought lactofree milk this week and bought gluten free flour to try my own gluten free bread. I'lll work through info you supplied.
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I love seeds incl sunflower and chai in my porridge in the morning! I will look into magnesium too. Thanks
Levothyroxine, pain and Graves disease 
Scared Newby
