I have an appointment with my endocrinologist this pm still feeling absolutely crap on 75 Levothyroxine per day (since Jan) and worried he might put my dose down here are my latest blood tests (fasted)
TSH 0.13 (was 1.51 Nov)
T4 17.3 (was 14 Nov)
T3 5.4 (was 4.1 Nov)
B12 350 (was 475 Nov)
D 63.6 (was 50.7 Nov)
Ferritin 46.2 (was 42.9 Nov)
Folate 5.4 (was 10.43 Nov)
TPA > 1300 (constantly this)
I take vitamins per day: D 1005, Evening primrose oil 500 selenium 55, vit A 800, Vit E 12,Vit C 80, Zinc 5
What can I say to him? Or do? So knackered with brain fog pains in arms legs flu like symptoms. Exhausted.
Thanks for any help.
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HealthySam
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Hi Thanks for the info I drink a glass of orange juice with bits per day and forgot to say often take fizzy magnesium and zinc tablets too. I eat a piece of dark chocolate too and occasional liver pate but will increase this now. I also eat seeds - pumpkin are in them but will increase now. I’m gluten and dairy free following advice from here but haven’t had a coeliac test that is useful (Dr did one when I was already gluten free) I will it the Vitamin D mouth spray. Thanks for the suggestions.
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. If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.
If B12 is low, before supplementing request GP to exclude you do not have pernicious anaemia first.
P.A. is another autoimmune condition and we need frequent B12 injections because our stomach can no longer absorb it.
There can be serious consequences if doctor doesn't diagnose/prescribe B12 or stops injecting. The following excerpt is from the link below:-
"Pernicious anaemia is the most common cause of B12 deficiency in the UK. It is classed as an autoimmune disease. The immune system normally makes antibodies to attack bacteria, viruses and other germs. If you have an autoimmune disease, the immune system makes antibodies against certain tissues of your body. If you have pernicious anaemia, antibodies are formed against your intrinsic factor, or against the cells in your stomach which make intrinsic factor. This stops intrinsic factor from attaching to vitamin B12 and so the vitamin cannot be absorbed into your body. It is thought that something triggers the immune system to make antibodies against intrinsic factor. The trigger is not known.
p.s. my mother died due to her GP stopping her injections for P.A. as GP stated to her "your blood tests are fine now and you don't need any more injection's". My mother died prematurely due to her GPs decision as she developed stomach cancer.
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
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Thyroid disease is as much about optimising vitamins as thyroid hormones
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron
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
If 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,
then 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.
Thanks for these suggestions I do make sure I stop vit B 2 weeks before tests and take my medication in middle of the night. I was on Teva but now on 50 Almus and 25 Mercury. Not really noticed a brand difference but is a larger dose which has helped with fatigue. I have swollen glands in my left neck which become painful when I’m feeling rough. Is this usual for Hashimotos? Also have dry eyes I now treat with gel drops and dry mouth scalloped tongue. The exhaustion is like when I had glandular fever (Epstein Barr) as a child. Crashing fatigue and brain fog is an accurate description.
I will follow the suggestions for the vitamins thanks.
Hi there! I don’t see any reference ranges, so it’s hard to determine how much change has been made. If you are still at the LOW END of the range, you may still be symptomatic. Have you considered adding some T3, like Cytomel? Or changing to a NDT med?
B12, ferritin , and other deficiencies can contribute to fatigue for sure. If you have any dietary sensitivity, like gluten, that can zap your energy too. A lot of thyroid patients never seem to have that deep restorative sleep we all need. There is also melatonin, which you would want to clear with your doctor first.
You might be going slightly over medicated. You can feel heavy, tired brain fog etc when over medicated. I certainly do feel these symptoms when I’m heading in over medicated territory. During the winter we tend to not be as active as the rest of the year. Medication T4 and T3 can build up over weeks if not used up by your activity levels and energy expenditure. And it’s not always about dropping T3 consider dropping T4 dose.
Flu like symptoms could be an indicator of PEM (post exertional malaise) which is a defining symptom of ME/CFS. Do these symptoms come when you've done some activity or are they always there?
If they come on after activity, look into pacing. Not saying you have ME, just pacing is a great tool to help manage your energy levels, recognising your limits and maybe preventing things from getting that much worse.
There's good info on the ME Association website. Also a good community on facebook & another on reddit for support. (I can find the links later if you need, battling my cat headbutting my phone whilst typing this!)
Thanks for the info I do have CFS so am careful not to overdo it but didn’t have much info on it thought it was connected to the thyroid so will look at your suggestions.
It's so hard to tell what's a symptom of CFS vs something else, since it impacts everything in our bodies! I played the "is it covid or just my cfs?" game quite often during lockdown.
Loads of helpful info on there. Note that it is a global community, but predominantly American so they have different treatments available that might not be accessible here.
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