Hi, previously diagnosed hyper/graves RAI treatment after relapse then eventually euthyroid. Annual bloods showing continuing raised tsh until finally last week gp agreed a trial of levo, starting dose of 25mg rising to 50mg after 28 days until retest in 3 months. My question is should i also be taking vitamins to improve my thyroid health further?
Recent test results from july are:
Tsh 5.5 ( 0.3-4.5) this has now risen to 8.3 in most recent dec test
Free T4 14.1 (11.0-22.0)
B12 154 (150.0-1000.0)
Ferritin 49 (12.0-250.0)
Folate3.1 (2.0-18.8)
Not sure if relevent but white blood count was below range as was neutrophil count and lymphocyte count and a slight decrease in eGFR.
Sorry if not all relevant and sorry for long post just unsure about results
Thanks.
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Lou17
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Your B12 level is very low in range, only 4 points above the bottom. Have you got symptoms of B12 deficiency because if so, I advise you to post your B12 and folate results along with an outline of your thyroid condition and symptoms, low ferritin etc on the HealthUnlocked Pernicious Anaemia forum healthunlocked.com/pasoc and ask their advice about what your GP should be doing. Really, it looks like you need further investigations to rule out pernicious anaemia.
Once your doctor has investigated and ruled out pernicious anaemia you may be offered B12 injections but if not you can raise your B12 levels through sublingual methylcobalamin supplements, either sublingual tablets or oral spray. Also take a good B complex as this will balance all the B's. Try to find one with the methylated forms of B vitamins as these are the most absorbable. Thorne Basic B is the one I take. This will raise folate levels but don't start until doc has ruled out pernicious anaemia. Taking folic acid can mask B12 deficiency.
Ferritin needs to be at least 70 or mid-range for thyroid hormones to function properly. As it's in range, GP is unlikely to offer supplements. You can buy your own if you wish. I use Spatone Liquid Iron but you must retest in 3/4 months as you musn't go too high in range. Iron is stored in the body.
Thankyou for very informative reply, i have had a look at links you suggested and do have a few of the symptoms listed, i did question gp on my B12 result st last appt and she has agreed to retest it again in January, so i shall see what that result shows then act further on your advice accordingly.
I do think there must be a genetic link with immune system as i have graves along with my brother and my daughter has just been diagnosed too, the symptoms you linked me too also looks like another daughter could have pernicious anaemia and even my youngest has been given ferritin treatment recently! Hmmm, you have given me lots of food for thought, many thanks again for reply.
Lou, it's hard to get proper nutrition even if you eat very well because you have gut issues with thyroid problems. You can take betaine hcl and/or digestive enzymes. This is the reason you have such low counts right now. So you can take supplements like B Complex plus b12 and folate with food. The iron should be take four hours apart from your levo so if you take your levo in the morning you could have it with supper or eat liver or use a cast iron frying pan.
Unfortunately i haven’t eaten well for some time due to lack of appetite although i do try to eat healthy when i do, i will try the liver as i do like liver just haven’t had it for long time being the only person in the household that likes it. I usually use a teflon coated frying pan will that really make a difference?
Teflon is nasty stuff when heated, especially as your pans get older. I'd switch to cast iron or some sort of ceramic. And don't get a budgie and keep it in the kitchen ... greenlivingideas.com/2012/0...
Keep learning, Lou, sometimes we are undermining our own health without realizing it. Fluoride, chlorine, bromides will fill in receptors which iodine should use to help your thyroid make hormone. We can be deficient in iodine and poor thyroid gland tries to use what is left. Our bodies will always try to do what it is supposed to and when it doesn't there is a very good reason it doesn't. We have to find those reasons.
You would think i was newly diagnosed knowing so little but apart from annual blood testing and being told results are a little high but no further action required i have pretty much had no more input since RAI treatment.
Just don't believe you cannot feel better. I know it's natural to assume the doctor knows best but not with autoimmune conditions. I don't think they teach it at medical school but we know so much more now. And then we blame every thing on aging but we can even overcome some of those.
If your TSH is over one your under medicated and need 25mcg dose increase. Retesting after 6-8 weeks and further 25mcg increases until TSH is around one and FT4 towards top of range and FT3 at least half way in range
B12 is extremely low and needs full testing for Pernicious Anaemia. Before starting B12 injections or sublingual lozenges if GP won't agree to injections
Folate low. Once you start B12 adding a good vitamin B complex will help
Ferritin is too low. Eating liver once a week should help or ferrous fumerate supplements
Vitamin D needs testing, very likely too low as well
See detailed vitamin supplements advice by SeasideSusie . Look at many of her replies
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results
All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results
Thanks for your reply gp has started me on levo 25mg for 28 days to increase to 50mg for 28 days then i think to increase again until reach 75 mg dose, think this is due to my age (53)
Having blood test for B12 again on 3rd of Jan so will see what that shows then take it from there, i will address vit issues regardless of result as you have all kindly advised. Thank you again .
It is likely you are not absorbing your food well/ eating good enough as your vitamin levels are poor. Personally I would test with a comprehensive stool analysis test through say Genova before I paid for betaine hcl/ enzymes/ uva ursi for bacteria or probiotics.
Supplements are not cheap and until you have firm results it’s just a guess. Would your gp test for thyroid antibodies? - v handy to know if you have hashimotos and as previously mentioned gluten and sugar is something we can live without. If you are positive you’ll need to cut them out anyway.
Not sure what you mean about being 53- that’s still young lol. No cap on meds.
Yes d3 needs to be tested too. If your gp will not do it you could consider blue horizon who are excellent with private tests( all finger prick tests and slowdragon has given you the correct advice regarding test taking.)
As someone who’s b12 was 0 it is imperative you get pa tested without supplements ASAP.
Also you are what you eat so your diet needs to be as good as you can afford- organic veg are worth the extra. I also suggest that you consider finding out how your dhea and cortisol levels are- a cortisol only test is not good enough- saliva test thro Genova is the best I know. Your thyroid is dependent on a fully functioning adrenal gland and vitamin levels at optimal levels. ( everyone is different but for me the b12 and adrenals made the most difference together with gluten free food)
Thanks for your reply, Wow! Thats a lot to take in
Nothing you have mentioned has even been discussed with me by the gp or endocrinologist, i remember i was extremely hyper when firdt diagnosed over 10yrs ago to the point of the endocrinologist ringing me in the evening telling me i must go to see him the very next day as he said i was very ill.
I had ultrasound scan on neck and was told i had graves which led to eventual RAI treatment.
Gp said i had antibodies but no one has ever mentioned wether i’m positive for hashi’s and the couple of appts i’ve had since i have forgotten to ask ( brain fog)
Don’t use sugar but do use honey as alternative, never tried going gluten free.
You say you were diagnosed with Graves. Do you know on what basis the GP made the diagnosis? Please check your antibodies test results to confirm Grave diagnosis. As you are now hypothyroid, it's possible you have Hashimotos rather than Graves but only test results would confirm either way.
It was endocrinologist that diagnosed me with graves over 10yrs ago with blood and antibody tests and result of a neck ultrasound scan after presenting with extreme hyper symptoms. Medicated with block & replace until euthyroid.
Hyper symptoms returned approx 8 months later which led to RAI. Eventually went hypo and all meds were stopped. No meds since until this week when gp agreed to trial of levo due to increasing tsh levels.
You are the "GUT GURO" . Learned lots from you . You share valuable information with the forum . I would like to know if brown rice and quinoa tahini from sesame seeds considered a no no on the gluten free diet that some of us on ? There are some conflicting information about it . Would like clarification please .
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