Hi I am new here, was doing well on T3 and Levothyroxine combi therapy before it was taken away by my current endo. Since then my thyroid levels have not stabilised at all. Was diagnosed 2012 and T3 introduced in Aug 2015. Current symptoms are puffy eyes, cold intolerance, dizziness, hair loss, weight gain, breathlessness, goitre, heavy periods, pale skin, constipation, recurring bladder infections. Endo wants me to reduce to 150mcg levothyroxine/175mcg Levothyroxine on alternate days from 175mcg Levothyroxine.
Advice appreciated, thank you.
TSH 0.02 (0.2 - 4.2)
FREE T4 23.1 (12 - 22)
FREE T3 4.5 (3.1 - 6.8)
TPO ANTIBODY 475 (<34)
TG ANTIBODY 366.3 (<115)
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ElliJ4
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Thyroid peroxidase and thyroglobulin antibodies are positive for autoimmune thyroid disease (Hashimoto's). There is no cure for Hashimoto's which causes 90% of hypothyroidism. Levothyroxine treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.
I would ask your GP to check ferritin, vitamin D, B12 and folate as low/deficient levels are common in hypothyroid patients and may be causing some of your symptoms. Low ferritin/iron can cause breathlessness, hair loss and heavy periods.
Good grief!!! Endo says symptoms are psychological!!! I'd like to see how your endo feels with those results!
Are you taking anything for these low levels? Are any further investigations being carried out? I'll reply as if the answer is no because I'm sure you would have mentioned it if so.
FERRITIN 3 (15 - 150)
I think that is possibly the lowest ferritin level I've seen on the forum. How any doctor can ignore this is beyond me.
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 an iron infusion to be carried out urgently which will raise your level within 24-48 hours, tablets will take many months.
You can 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...
Low ferritin can suggest iron deficiency anaemia, so you need an iron panel and full blood count as well.
Please go straight over to the Pernicious Anaemia Society forum for further advice healthunlocked.com/pasoc Post these results, your ferritin result and any iron deficiency information you may already have, plus mention any signs of B12 deficiency you may be experiencing from the list here b12deficiency.info/signs-an...
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."
I think you will need intrinsic factor antibodies testing, you may well need B12 injections and you definitely need folic acid prescribing for the folate deficiency. Do not start the folic acid until further investigations have been carried out and B12 started.
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."
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VITAMIN D TOTAL 19.6
You have severe Vit D deficiency and 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 so check your prescription before you leave. Once these 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/
Your doctor wont know, because they are not taught nutrition, but 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
This doctor is dangerous. I suggest you sort out treatment, then seriously consider making a formal complaint for negligence against this one and find another one who actually knows what he is doing.
Endo can't read blood results to recognise you are severely deficiency in vitamins and minerals and obviously hasn't read the BTA Statement 2015 which outlines possible causes of persistent symptoms in euthyroid patients on Levothyroxine in Box 1 of the link below.
You are severly deficient in ferritin, vitamin D, B12 and folate. Show those results to your GP.
Vitamin D is deficient. Your GP should refer to local guidelines or the NICE CKS recommendations for treating vitamin D deficient adults cks.nice.org.uk/vitamin-d-d... Do NOT accept a prescription for 800iu which is a maitenance dose to prescribed when vitD is replete >75. My GP prescribed 40,000iu daily x 14 followed by 2,000iu daily x 8 weeks which raised vitD from <10 to 107. Vitamin D should be taken 4 hours away from Levothyroxine.
Ferritin is deficient and this may indicate iron deficiency anaemia. Your GP should do an iron panel and full blood count to check. If you are prescribed iron it should be taken 4 hours away from Levothyroxine.
B12 and folate are very deficient. Symptoms are listed in b12deficiency.info/signs-an... Your GP should initiate B12 injections 48 hours before you start taking 5mg folic acid to correct folate deficiency. GP also needs to investigate whether pernicious anaemia is causing deficiencies as B12 injections will be required at 3 month intervals for life if you have PA. healthunlocked.com/pasoc are the experts on PA, B12d and folate deficiency.
Your Endo doesn't know anything about hypothyroid patients' needing vitamins/minerals near the top of the range, not near the bottom, so you'd be better off without his advice and you'd feel much better when all of the above are raised.
Yet another Endo following instructions from on high rather than listening to and observing the patient. It is a disgrace ... they have little or no respect for patients. How can they be Doctors when they have absolutely no interest in alleviating the symptoms of illness.
I am so glad I look after myself after reading and learning about my condition. Stick with this forum and we will have you well in no time - but you have to put the work in and improving levels of vitamins and minerals can take time.
I do hope you were not prescribed anti-depressants
Nearly every day we read the same old stories of incompetent doctors/endocrinologists. They have no idea as they sit in an ivory tower raking in the money whilst the patients' lives depend on them to restore good health. Instead patients are not treated adequately. Doctors are inured to the suffering of their patients and don't give a damn about trying to get patients well again. Just take money from continuing fees.
Thyroid UK are collecting evidence of malpractice due to removing clinically needed T3
Please email brief outline of this. How T3 improved you and the subsequent disaster since it was stopped. I would include the dire vitamin levels
dionne.fulcher@thyroidUK.org
Email Thyroid UK also for list of recommended thyroid specialists
You have Hashimoto's confirmed by high thyroid antibodies
Hashimoto's affects the gut and leads to low vitamin levels
Low vitamin levels stop Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
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- but you have to put the work in and improving levels of vitamins and minerals can take time.
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