I've been on 50mg of Levo thyroxine since June 2018 when I was diagnosed with hypothyroidism. I hadn't been aware of any symptoms pre diagnosis but by July I had noticeable weakness in my forearms and since August I've been experiencing constant pain and weakness in my forearms and biceps. My GP is not inclined to consider this is related to the thyroid medication but he did do a series of blood tests in August which he considered inconclusive and referred me for physiotherapy. I've recently returned to my GP as the problem is continuing and is becoming quite debilitating. The GP agreed to running the thyroid blood tests again. Lately, I've been of the view that maybe my Thyroxine dose needs to be increased but I've noticed a couple of issues whilst reviewing my previous results. I've set out below the results that seem to be relevant to this issue because the full set includes a lot more (ranges shown in brackets):
The two things I've noticed are that the D3 result is not optimal and the tests which have been done have not included any for iron levels (unless these are described as something other than 'iron'). I'm now wondering whether the vitamin D3 may be an issue that's contributing to my aching arms, rather than it being an under medication of thyroxine?
Before I go back to my GP to discuss my findings and the latest blood test results, I'd welcome views from others on the forum. For instance, should I just go ahead and take some vitamin D supplements to see if it helps?
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The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo if that is where you feel well. After diagnosis and starting on Levo, retesting should be every 6-8 weeks with an increase of 25mcg, until your levels are where they need to be for you to feel well. Your TSH is still too high and your FT4 is only 39% through it's range with those results. You should ask your GP for an increase to 75mcg.
As all nutrient levels should be optimal for thyroid hormone to work properly then:
Vitamin D3 (50 – 75 adequate > 75 optimal) 67.1
The Vit D Council considers anything below 100nmol/L to be deficient and that the recommended level is 125nmol/L
If that was my result I would be taking the dose suggested by the Vit D Council to raise my level to that which is recommended which is 3,700iu daily (you can only buy in 1,000iu, 2000iu, 4000iu or 5000iu), then retest after 3 months. Once the recommended level is reached, adjust dose to one that maintains that level, which you'll have to find by trial and error, retesting once or twice a year to stay at the recommended level.
If you go ahead and supplement, then there are important cofactors needed when taking D3 as recommended by the Vit D Council -
D3 aids absorption of calcium from food and 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.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.
Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.
Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds
This should be at least half way through it's range - 15.5+ with that range. Folate rich foods will help, as will a good B Complex containing methylfolate rather than folic acid, eg Thorne Basic B or Igennus Super B.
B12 (197.0 – 771.0) 386
You don't say what the unit of measurement is - pmol/L or pg/ml.
According to an extract from the book, "Could it be B12?" by Sally M. Pacholok:
"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".
"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."
The two B Complex supplements mentioned above both contain 400mcg B12 at the suggested dose, this may be enough to raise your B12 level, if not you could take some sublingual methylcobalamin lozenges 1000mcg.
Ferritin (13 - 150) 101
That was a good level at the time. It would not have triggered any other iron tests.
I’m so impressed with the way you’ve described to me about the aim of treatment being about being medicated where it needs to be for the patient to feel well! I’ve had a hard time justifying to my GP why I think my arm pain warrants a review of my thyroid treatment. According to the GPs I’ve spoken to so far, they’ve never heard of patients on thyroid medication complaining of muscle pain.
You’ve also helped me understand that optimising nutrient levels helps the thyroxine to work effectively. Other than taking vitamin C tablets for years, I’m completely ignorant of vitamin supplements generally.
You refer to the recommended daily dose of vitamin D being 3,700 daily which I’ve tried to clarify online but I can only find recommendations for 5000 daily. Would a dose of 5000 daily be OK?
The information on cofactors is interesting but on first reading seems to suggest that I should be taking a regime of five supplements in addition to the Vit D, which begins to sound somewhat daunting!
Do I gather you’re advocating concentrating on Vit D, K2, Magnesium and B complex? And, maybe as Greygoose suggests B12 too?
Just to say again – I really appreciate your time in responding and your advice.
I was just checking your brand because if had been Teva brand then many members have had awful side effects from that.
As your B12 is measured in pg/ml then the quote from Sally Pacholok's book is correct for your level. You could possibly raise your level with the amount of B12 in the B Complex, but you can also supplement with methylcobalamin, it will raise more quickly that way but you'll still need the B Complex to balance all the B vitamins and to help raise your folate level. Any excess B12 will be excreted. You could, at some point in the future, retest vitamins and minerals and your B12 result would show if you are supplementing at the right dose or wasting your money by continuing to supplement with methylcobalamin (you wont get a baseline result unless you come off B12 supplements for 4-5 months).
Your muscle pain could be due to low Vit D level, it will be interesting to see what happens when these things have been addressed.
Vit D Council's recommendations for amount to take
My current level is 105nmol/L and I need to increase it, then through the winter I need 5000iu daily to maintain my level, less in the summer.
Magnesium and Vit K2 are essential, the other cofactors you can look for from food sources but I do take a mineral complex a few times a week (one that doesn't contain iron, calcium or iodine, very important not to supplement with those unless tested and found to be deficient).
Don't start supplements all at the same time, stagger them. Start with one, give it a week or two and if no adverse reaction then add in the second one, give it another week or two and if no reaction add in the next one, etc. By doing it this way, if you do have any reaction you will know what caused it.
Do I gather that I'd need to average out Vit D tablets over, say, a week to get a daily dose of 3700?
I'm also gathering your recommended strategy is to self medicate the vitamins (and not mention this to my GP) and do my best to persuade the GP to up my current thyroxine dose 75 mg per day?
Doctors will only prescribe for vitamin/mineral deficiencies, you don't have any. If you showed your GP your results he would say you don't need to supplement anything because they're all in range. They aren't taught nutrition and have no concept of hypo patients needing optimal levels, if you are one point within the bottom of the range they you are fine as far as they are concerned.
For your Vit D, I would take the nearest to the recommended dose, which is 4000iu daily. But the cheapest way would be to buy some 5000iu softgels (look at Doctor's Best) and take them 6 days a week (30,000iu) rather than take 4000iu x 7 days a week (28,000iu)
Seaside Susie - thanks again for your advice with the vitamin options. I'll need to do a lot of reading to get a grip of it all! Am I the only one to worry that it's going to take me a long tome to feel 'normal' again?
I did have the same problem, a few years ago. I almost had to give up driving because I thought there was something wrong with the steering on my car - although my s-i-l said not. But, the car kept drifting to the right…
A while later, I had problems holding my head up straight, it sort of wobbled around as if my neck wasn't strong enough to support it.
Then, I got my B12 tested, and the result was about the same as yours, a bit lower. So, I started self-treating with B vitamins - B12 and a B complex - and these problems gradually disappeared. And, I realised there was nothing wrong with my car, it had just been that my left arm had got weaker and weaker. And, in the end it had affected my right arm, too, and I had no strength in my hands. Now, after about four years on B vits, I don't have those problems anymore.
It’s my one overwhelming remaining symptom a year on from my “crash”. I still get times when I feel like it’s an effort to hold my head up, climbing the stairs in the house leaves my legs feeling like I’ve run ten miles and holding my arms up to fold laundry is just agony!
Yet I am back to doing everything I used to now: active all day, taking my very active dog for walks of 4 miles or so over varying terrain, and yet, I still have this weakness.
I’m going back to see Dr Toft soon and whilst I’m still keen to push for a T3 trial as I feel like I still need a little ‘boost’, I’m pleased to hear that these symptoms may go if I persevere with the vitamins I’m taking now.
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money
All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24hours prior to test, delay and take immediately after blood draw. This gives highest TSH and lowest FT4. (Patient to patient tip, not to be mentioned to GP or phlebotomist)
NICE guidelines saying how to initiate and increase Levothyroxin. Note that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine
I know that before my thyroid was removed I wasn't on any medication but I had a very low level of Vitamin D. I never had any aches or pains at all and swam, walked and did Yoga everyday. As soon as I was put on Levo over 8 months at different dosage I became so ill with pain that I could not even get up from the floor, let alone do any exercise. I joined this site and now self medicate with NDT .
This has taken 3 years now but I feel mostly well again with no pain.
I would like to add that my B12 when tested was high in the range your pains could be due to this. Mine was Levo.
Thanks so much for your input, Bunnyjean. I'm intending to work out a comprehensive vitamin supplement regime along the lines advised by SeasideSusie and to try my very hardest to get my GP to agree to up my Levo dose and will keep my fingers crossed things start improving after that.
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