I'm a 56 year old woman and have been treated for an under active thyroid for a decade or so. Currently taking 150 mcg Levothyroxine sodium per day. Around 8 weeks ago I started to experience some unusual symptoms; intense anxiety, fatigue, calf muscle twitches (and random twitching elsewhere including eye), tinnitus, then as the weeks have gone on symptoms now include pins & needles in feet, tingling, muscle and joints aches (mainly left side), neck ache, palpitations, loss of appetite. For months before I had been struggling with my Levothyroxine dosage often feeling I was over medicated then under medicated.
I went to the GP 3 weeks ago and she ordered blood tests and the results are below. The surgery deemed these results 'acceptable' and that I was to book a routine check up in 6 weeks. I got a copy of the results and believe they are not acceptable but would appreciate feedback from the forum as I have an appointment with the GP this Friday and would like to go as informed as possible on what should happen next.
Serum total 25-OH vit D level 50 nmol/L 50.00 - 200.00nmol/L
FBC need to be accessed in context of other markers eg haemoglobin & red blood cells for potential anaemia. Im not very re this knowledgeable but those who are would likely need full results.
Was cholesterol or HBA1c abnormal? Cholesterol can rise if thyroid low.
Your TSH looks very good but unfortunately it’s not very reliable. Doctors focus in TSH (a pituitary hormone). The TSH signal the thyroid to produce hormone, if assumed if its in range - so must thyroid hormones, but that’s always the case.
Many use private test to confirm FT4 & FT3. FT4 can be good but to work well & convert to FT3 in your body, nutrients, often must be optimal. Most should be at least half way through range to be optimal. Within range is acceptable to doctor.
Low FT3 can cause hypothyroidism symptoms even it FT4 very good.
Monitor my health offer private fingerpick test for thyroid function (discount available) Other companies offer options with thyroid antibodies & nutrients. Antibodies are useful for diagnosis so not strictly necessary & you have recently had nutrients tested so I think I’d be arranging a basic function to check FT4 & FT3.
When you test it’s best to book draw early in morning, fast overnight (drink lots of water) delay levo until after draw. Avoid supplements containing biotin 3 days before (longer is high dose).
Biotin can interfere with testing process.
This gives consistent testing - doctors aren’t taught to account for variations.
Well when things are out of range it’s shouldn’t be acceptable, that’s the point of a range.
Is that Total Cholesterol ? Above 5 is high I think ? Not certain, Doctor might suggest statins but investigate thyroid levels first.
HbA1c measures the sugar attached to the haemoglobin, so it gives an average reading from past few months. An average is said to be more useful than a random reading.
Yours is not currently an issue, but if it increases doctors will say you can “reduce carbohydrates” in diet.
HbA1c below 41 mmol/mol (6.0%): Non-diabetic
HbA1c between 42 and 47 mmol/mol (6.0–6.4%): Impaired glucose regulation (IGR) or Prediabetes
HbA1c of 48 mmol/mol (6.5%) or over: Type 2 diabetes
I'm wondering what planet your GP is from - does she have little wiggling antennae protruding from her head and purple skin with green spots?
What is very obvious and I would suggest that your GP is being negligent to have suggested these two results are "acceptable":
Serum vitamin B12 <148 ng/L 200.00 - 900.00ng/L
Your result is less than 148 which means that the testing equipment doesn't measure low enough to record your level. This should be screaming B12 deficiciency at your GP who should be doing further tests for B12 deficiency and pernicious anaemia.
You can check signs/symptoms of B12 deficiency here:
If you have any then list them to show your GP and ask for testing for B12 deficiency and Pernicious Anaemia. Do not take any B12 supplements or folic acid/folate/B Complex supplements before further testing of B12 as this will mask signs of B12 deficiency and skew results and if you have B12 deficiency is not detected and treated then this could affect your nervous system. B12 deficiency should be treated before starting folic acid because folic acid can sometimes improve your symptoms so much that is masks B12 deficiency.
◦Serum folate of less than 7 nanomol/L (3 micrograms/L) is used as a guide to indicate folate deficiency.
Please go back to your GP with this information and request testing for B12 deficiency/PA and treatment for your folate deficiency. The treatment for folate deficiency should be delayed until further testing of B12 has been carried out and B12 injections (which I think you may well need, if not then supplements) has been started.
Ferritin appears not to be too bad providing that there is no inflammation present. Was CRP (an inflammation marker) tested? Ferritin rises with inflammation so it's important to know if it's a true ferritin reading.
Serum total 25-OH vit D level 50 nmol/L 50.00 - 200.00nmol/L
This just within the "adequate" category but is low and needs supplementing.
You might want to check out a recent post that I wrote about Vit D and supplementing:
and you can check out the link to how to work out the dose you need to increase your current level to the recommended level.
If you would like further help with that please ask.
Doctors don't know, because they're not taught much about nutrients, but there are important cofactors needed when taking D3. You will have to buy these yourself.
D3 aids absorption of calcium from food and Vit 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 such as hardening of the arteries, kidney stones, etc. 90-100mcg K2-MK7 is enough for up to 10,000iu D3.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking D3 as tablets/capsules/softgels, no necessity if using an oral spray.
For D3 I like Doctor's Best D3 softgels, they are an oil based very small softgel which contains just two ingredients - D3 and extra virgin olive oil, a good quality, nice clean supplement which is budget friendly. Some people like BetterYou oral spray but this contains a lot of excipients and works out more expensive.
For Vit K2-MK7 my suggestions are Vitabay, Vegavero or Vitamaze brands which all contain the correct form of K2-MK7 - the "All Trans" form rather than the "Cis" form. The All Trans form is the bioactive form, a bit like methylfolate is the bioactive form of folic acid.
Vitabay and Vegavero are either tablets or capsules.
Vitabay does do an oil based liquid.
Vitamaze is an oil based liquid.
With the oil based liquids the are xx amount of K2-MK7 per drop so you just take the appropriate amount of drops.
They are all imported German brands, you can find them on Amazon although they do go out of stock from time to time. I get what I can when I need to restock. If the tablet or capsule form is only in 200mcg dose at the time I take those on alternate days.
If looking for a combined D3/K2 supplement, this one has 3,000iu D3 and 50mcg K2-MK7. The K2-MK7 is the All-Trans form
Magnesium should be taken 4 hours away from thyroid meds and as it tends to be calming it's best taken in the evening. Vit D should also be taken 4 hours away from thyroid meds. Vit K2-MK7 should be taken 2 hours away from thyroid meds. Don't take D3 and K2 at the same time unless both are oil based supplements, they both are fat soluble vitamins which require their own fat to be absorbed otherwise they will compete for the fat.
Don't start all supplements at once. Start with one, give it a week or two and if no adverse reaction then add the next one. Again, wait a week or two and if no adverse reaction add the next one. Continue like this. If you do have any adverse reaction then you will know what caused it.
Thank you so much for this, I thought I was going mad and was very unsettled by the GPs response and you may well be right about them being from a different planet.
Lots for me to take in from your post and I will look at all the links later today but I know I will go into the GP appointment on Friday suitably prepared.
BTW CRP wasn't tested.
Again, thank you so much for the detailed response, I greatly appreciate you taking the time to reply so comprehensively.
Many people find different brands are not interchangeable
Teva brand in particular upsets many people
Teva contains mannitol as a filler, which seems to be possible cause of problems.
Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Aristo (100mcg only) lactose free and mannitol free.
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Accord only make 50mcg and 100mcg tablets
Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord doesn’t make 25mcg tablets
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
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
Similarly if normally splitting your levothyroxine, take whole daily dose 24 hours before test
Increasing numbers of members find it better to split levothyroxine as 2 smaller doses…..half dose waking up and half dose at bedtime
REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex
I am apalled by your GP's dismissive response to your very clear B12/Folate deficiency. With those results your GP should be recommending testing for Pernicious Anaemia and Coeliac.......... these are more likely if your Hypothyroidism is auto-immune, so not testing you for thyroid antibodies is not taking appropriate care.
"How should I manage people with confirmed vitamin B12 or folate deficiency?
If cobalamin levels are low, check for serum anti-intrinsic factor antibodies."
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), stop the B12 and just carry on with the B Complex.
It is vital if you intend to supplement both B12 and folate that B12 is started a week before the folate.
Coeliac/gluten intolerance
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
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.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's test positive for coeliac, but a further 80% find 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 slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
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.
Thank you so much for your responses. It's much appreciated.
I had a message from the Doctor today to say my homocsysteine levels are elevated indicating B12 deficiency. He has asked a specialist for their advice. He is waiting for the methylmalonic result and once he has this and the specialist advice he will implement a treatment plan
So still no treatment but I do feel this is progress of sorts.
very high percentage of us with Hashimoto’s find strictly gluten free diet helps or is essential
But …as medics think gluten intolerance is an “airy fairy” non medical issue…..if you did test positive for coeliac they take more notice
Regardless of test result, it’s likely gluten free diet may help
But test first ….. and don’t go gluten free until had results. If test is positive you should have endoscopy to confirm….and need to remain on high gluten rich diet until this is done
If test is negative, you can consider trialing strictly gluten free diet in Jan/Feb …..once vitamin levels are optimal
But we only change one thing at a time otherwise impossible to decide what’s helping most
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