I had my thyroid removed 2 years ago due to a pre-cancerous nodule. I am on 100mg of Levo and weigh 74kg having put on 10kg since the op. I have never had the dose increased as blood tests normal. A month ago I started experiencing in order of occurrence:
Numb feet and aching upper arms
Slight incontinence
Numb legs - balance off (falling over)
Very slow movement
Carpal Tunnel
Very painful thumbs (developed arthritic nodules)
Exhaustion
Brain fog
Numb pelvis
Numb stomach
Constipation
Blood test results (taken 5 hours after daily 100mg Levothyroxine.
TSH: 6.15
Free T4: 13.6
Free T3: 4.2
Vit B12 250 pg/mL
Blood Sugar - Normal
My GP has agreed to raise dose to 125mg a day. She said she would have refused to if the TSH hadn't been raised however as GPs don't have authority to do so!
I also questioned the B12 result as my symptoms almost align more with B12 deficiency. She said that 250 was within range and if I was concerned just to take a supplement. I said it could be Pernicious Anaemia as my numbness has spread to my pelvis and that injections would be a better option and she said 'no, you're not anaemic!'.
Thoughts?
Written by
Cazza0104
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She cannot know that you're not anemic without doing the correct blood tests. I imagine she just can't be bothered and doesn't understand how ranges work! From what I understand, PA is more about how you feel and less about what a serum B12 test says. I would ask for a second opinion. GPs in general know nothing about nutrients, not even a very important one like B12.
Can you give the ranges, please? Very important to always give ranges because they vary from lab to lab.
But, if you took your levo 5 hours before the blood draw, you are going to have a false 'high' FT4. Won't affect the FT3, though.
TSH levels depend on the time of day, being highest before 9 am, then dropping sharply to its lowest around midday. What time was your blood draw? Your TSH is obviously much too high - should come down to 1 or below. So, you're obviously under-medicated. But I don't think your GP is right in saying she doesn't have the authority to increase your dose. Who does, then? Are you under the care of an endo? If so, ask him/her about the B12.
Most people when adequately treated will have Ft3 at least 50-60% through range
She said only an endocrinologist should be increase Levo if results were within range
That’s completely wrong
Also absolutely essential to maintain GOOD vitamin levels
Guidelines of dose Levo by weight
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)
Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.
Some people need a bit less than guidelines, some a bit more
TSH should be under 2 as an absolute maximum when on levothyroxine
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
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
supplementing 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
B vitamins best taken after breakfast
Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose and 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 until Serum B12 over 500 or active B12 over 70
Post discussing how biotin can affect test results
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