Taking 100mcg levo diagnosed 2012, GP reduced me to 100mcg levo from 150mcg. Endo doesn't know about the reduction and wants me to increase to 175mcg, repeat thyroid function test due next week ready for endo appointment, receiving conflicting advice from haematology consultant feedback welcome I am not feeling at all well thank you
(October 2017 done before 9am, fasting and leaving off levothyroxine for 24 hours)
TSH 5.4 (0.2 - 4.2)
FREE T4 13.7 (12 - 22)
FREE T3 3.6 (3.1 - 6.8)
THYROID PEROXIDASE ANTIBODY 404.5 (<34)
THYROGLOBULIN ANTIBODY 358.3 (<115)
I think that's Hashimotos
Symptoms - tiredness, constipation, pins and needles, puffy eyes, swelling at front of neck, throat tightness, loss of motivation, memory loss, joint pain, tinnitus, dizziness, palpitations, dry skin, pale looking appearance, heavy periods, irregular periods, weight gain, flaky nails, eyelash loss and eyebrow loss
FERRITIN 32 (30 - 400)
FOLATE 2.2 (2.5 - 19.5)
VITAMIN B12 221 (190 - 900)
VITAMIN D 18.3 (<25 severe)
Haematologist took me off iron last year due to iron infusion and that the infusion was just a one off
Written by
Khristina
To view profiles and participate in discussions please or .
Ask your blood test for endocrinologist will as a result be useless.
Bloods must be done 6 weeks after CONSTANT dose
Suggest you write/email to endocrinologist and outline that GP reduced dose, include the Thyroid and vitamin tests
Improving vitamin evens is essential for thyroid hormones to work
You need LOADING dose of vitamin D - this is short course of few weeks mega high dose, then likely to need fairly high maintenance dose (2000-3000iu daily)
Ferritin an iron infusion to bring level up quickly
Testing for Pernicious Anaemia and intrinsic factor before starting B12 and few days later folate or folic acid
You might suggest they test you for Coeliac, but you have to wait for endoscopy and eat high level gluten for 6 weeks beforehand. Most with Hashimoto's need to be gluten free anyway, so it's probably not worth the hassle
Just to agree with SlowDragon - you're heading towards probable iron anaemia again and you're folate deficient. This is a combination that means you need to be assessed for masked B12 deficiency unless those investigations have already been done when you first presented with anaemia.
I'm assuming that you're not supplementing with folic acid at present and, as SlowDragon says, it should not be started until after any assessments for B12 problems.
And, the one-off infusion was plainly not enough to help you maintain an adequate level of iron. If practical, request another infusion followed by ferrous fumarate or a similar preparation that will help you to maintain appropriate levels.
Khristina When you see your endo next week, I think you should discuss with him that your GP is altering your dose of Levo and ask that if he is the one who is supposed to be controlling your dose then will he please write to the GP and ask him to stop interfering. It's not fair on you to be stuck in the middle with one saying increase and the other saying reduce. If your GP does this again then ask him to contact the endo for confirmation of what dose you should be taking and say you wont alter dose until the endo has replied.
THYROID PEROXIDASE ANTIBODY 404.5 (<34)
THYROGLOBULIN ANTIBODY 358.3 (<115)
Yes, this confirms Hashi's which is where antibodies attack and gradually destroy the thyroid, and the antibody attacks cause fluctuations in symptoms and test results.
Not many doctors understand Hashi's (they call it autoimmune thyroiditis) and dismiss antibodies as of no importance. However, you should read and learn so that you can help yourself.
You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.
Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.
Hashi's and gut/absorption problems tend to go hand in hand and very often low nutrient levels are the result and yours are dire
FERRITIN 32 (30 - 400)
Haematologist took me off iron last year due to iron infusion and that the infusion was just a one off
We often read on here that a haematologist will do another iron infusion if ferritin falls below 50. Maybe you should be discussing this with your doctor.
Have you been diagnosed with iron deficiency anaemia to be under a haematologist? If so, how is that? Do you still have below rasnge MCV and above range MCHC?
For thyroid hormone to work (that's our own as well as replacement hormone) ferritin needs to be at least 70, preferably half way through range.
You need an iron supplement and as your level is so low you should ask for another iron infusion which will raise your level within 24-48 hours, tablets will take many months.
If you are prescribed tablets then take each one with 1000mg Vitamin C to aid absorption and help prevent constipaton. Always take iron 4 hours away from thyroid meds and two hours away from other medication and supplements as it will affect absorption.
You can also help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, and including lots of iron rich foods in your diet apjcn.nhri.org.tw/server/in...
Do you have signs of B12 deficiency b12deficiency.info/signs-an... You should post on the Pernicious Anaemia Society forum for further advice healthunlocked.com/pasoc You probably need testing for pernicious anaemia and you certainly need folic acid for your folate deficiency. Don't start taking folic acid before any other investigations are carried out, and B12 should be started before folic acid.
I have read (but not researched so don't have links) that BCSH, UKNEQAS and NICE guidelines recommend:
"In the presence of discordance between test results and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment."
And 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."
**
VITAMIN D 18.3 (<25 severe)
You need to point out to your GP that you have severe Vit D deficiency and you need loading doses - see NICE treatment summary for Vit D deficiency:
"Treat for Vitamin D deficiency if serum 25-hydroxyvitamin D (25[OH]D) levels are less than 30 nmol/L.
For the treatment of vitamin D deficiency, the recommended treatment is based on fixed loading doses of vitamin D (up to a total of about 300,000 international units [IU] given either as weekly or daily split doses, followed by lifelong maintenace treatment of about 800 IU a day. Higher doses of up to 2000IU a day, occasionally up to 4000 IU a day, may be used for certain groups of people, for example those with malabsorption disorders. Several treatment regims are available, including 50,000 IU once a week for 6 weeks (300,000 IU in total), 20,000 IU twice a week for 7 weeks (280,000 IU in total), or 4000 IU daily for 10 weeks (280,000 IU in total)."
Each Health Authority has their own guidelines but they will be very similar. Go and see your GP and ask that he treats you according to the guidelines and prescribes the loading doses, do not accept 800iu as that is a very small maintenance dose which is barely enough for someone with a reasonable level already, it will never raise your level. Once the loading doses have been completed you will need a reduced amount (more than 800iu so post your new result as the time for members to suggest a dose) to bring your level up to what's recommended by the Vit D Council - which is 100-150nmol/L - and then you'll need a maintenance dose which may be 2000iu daily, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with City Assays vitamindtest.org.uk/
There are important cofactors needed when taking D3
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.
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 and 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
As you have Hashi's, once you've finished the loading doses of Vit D, you may be better off buying BetterYou oral D3 spray for better absorption. It comes as D3, and a combined D3/K2-MK7 which you might prefer as you could then take one supplement rather than two.
Thanks for reply, I was referred to haematology due to recurring iron deficiency. My MCV is still under range and MCHC is still over range nut this only happens when my complete blood count is done after/during a period so by the looks of things the heavy periods are causing it. No longer under haematology, they discharged me once my ferritin was above range after infusion.
If your iron deficiency is recurring then they need to get this sorted. You are never going to be well if this keeps happening. I don't know what the answer is but in any event your ferritin needs to be over 70 for thyroid hormone to work.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Feel fobbed off by endo
Been sacked for being ill
T3 taken away, looking for a new source please :)
so confused with different doctors and their differing advice 
