I felt hopeful when my doctor suggested referral to endo as I have revisited GP regularly with hypothyroid symptoms persisting, despite levothyroxine dose 75mcg since Sept 17 (first diagnosed, May 2016 on 50mcg). Mainly weight gain, tiredness, short of breath, low mood and brain fog. I have been on B12 and Vit D since Jan this year as GP suggested tests, before I read all the useful advice here and have felt slightly better. The endocrinologist did test T3, which my GP would not and this was normal, 4.3 pmol/l He explained how prescribing has risks of cardiac complications and overtreatment. He told me I was subclinical hypo and that many people would like to be able to lose weight and have more energy, was I expecting too much from levothyroxine? he asked. I already feel I am being too demanding so this did not help. When I received the follow up letter my diagnosis was Hashimoto's which was a surprise as no one had suggested the antibody test before. I was then discharged and recommendation to GP was to test thyroid annually. This has made me rethink what to do next to try and alleviate the symptoms as I had a feeling that T3 might be the thing to help. I am reading up on diet and further supplements from thyroidpharmacist.com The test results (no levels provided) I received from this recent consultation were:
TSH 1.1 mU/l
Free T4 19.9 pmol/l
Free T3 4.3 pmol/l
Vit D 58 nmol/l
Vit B12 259 ng/l
Calcium 2.2mmol/l
TPO ab greater than 1300 U/ml
haemoglobin 124 g/l
serum folate 9.5 mcg/l
It has been very helpful to read other people's experiences and the informed replies and just sharing mine helps too. Any other insights or advice very gratefully received
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Niho96
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There really isn't a lot we can say without the reference ranges for your test results. Ring the hospital/consultant's secretary/path lab - whatever is needed to get those ranges.
We know that TSH is in a good place, but we need to know where in the range your FT4 and FT3 lie before we can say much. The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo if that is where you feel well. The FT3 is particularly important because although you've been told it's "normal", that's just because it will be somewhere within the range. Low FT3 is what causes symptoms. It looks like you have poor conversion and T3 would be beneficial. If FT4 is high in range and FT3 low in range then that indicates it.
He explained how prescribing has risks of cardiac complications and overtreatment.
Poppycock. Scaremongering. They don't like prescribing T3 because it's expensive and they've been told not to.
He told me I was subclinical hypo and that many people would like to be able to lose weight and have more energy, was I expecting too much from levothyroxine?
Condescending twit!
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As you have been told that you have Hashi's, then a strict gluten free diet and supplementing with selenium l-selenomethionine 200mcg daily can help reduce the antibodies, as can keeping TSH suppressed.
This is too low. The Vit D Council recommends a level of 100-150nmol/L. You are unlikely to be prescribed anything for your level so you will be better off buying your own, and due to the Hashi's an oral spray gives better absorption. BetterYou do a 3000iu dose spray, I would suggest you double dose (6000iu) daily for 6-8 weeks, then 3000iu daily, then retest 3 months after starting.
When you've reached the recommended level then you'll need a maintenance dose which may be 2000iu daily, maybe more or less, maybe less in summer than winter, 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 as recommended by the Vit D Council -
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
BetterYou do a combined D3/K2-MK7 spray if you would find that more convenient.
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Vit B12 259 ng/l
This is low. 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."
Check here for signs of B12 deficiency and if you have any list them for your doctor and ask for further testing
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."
If you don't have any signs of B12 deficiency then you could supplement with sublingual methylcobalamin lozenges along with a good B Complex to balance all the B vitamins, eg Thorne Basic B or Igennus Super B.
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serum folate 9.5 mcg/l
B12 and folate work together. We don't know if yours is low but my guess it probably is. The B complex will help raise your folate level but don't start taking it until any necessary further investigation/tests into B12 have been done as the folic acid/folate can mask symptoms of B12 deficiency.
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TPO ab greater than 1300 U/ml
There is the confirmation of Hashi's.
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Was Ferritin tested? Low ferritin can cause shortness of breath, also a level below 70 means that thyroid hormone can't work properly.
Thank you so much, that is really helpful, I had ferritin tested at GPs in Jan and it was 35 ug/l (12-300). Folate 7 ug/l (3-17) I will follow up on all those points you mentioned.
So ferritin is low. It's said that 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. Low ferritin can suggest iron deficiency anaemia so a full blood count and iron panel would be a good idea.
First steps are to improve your vitamins as outlined by SeasideSusie
Plus very, very many with Hashimoto's find strictly gluten free diet helps or is essential
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect 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)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
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New NHS Endocrinologist tomorrow for ‘Second Opinion’. Help with bloods please!
22 years Hypo but recent changes - help with test results v much appreciated
Blood test results
Kindly requesting help again
