Hi all, I don't know what to expect upon joining this site so a bit about me: diagnosed with underactive thyroid 2012, current dose 25mcg levo. Endo says symptoms are not thyroid ones, please see below
Swollen neck
Hair loss
Infrequent stools
Heavy periods
Anxiety
Pins and needles
Puffy eyes
Dark circles under eyes
Feeling cold
Memory loss
Dizziness
Ears ringing
Thanks for reading and for any advice anyone can give.
TSH 0.02 (0.2 - 4.2)
FT4 23.6 (12 - 22)
FT3 3.8 (3.1 - 6.8)
TPO antibody 679 (<34)
TG antibody 255.3 (<115)
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val370
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Has anyone bothered to tell you that you have autoimmune thyroid disease aka Hashimoto's as confirmed by your high antibodies? This is where antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test results. This can be seen from your TSH results varying from
3.87 to 1.60 to <0.02
when on the same dose of 175mcg Levo/10mcg T3 each time. The variation in level of TSH is too great for it to be just down to the fact that you may have had blood drawn at different times of the day.
[All thryoid tests should be at the very first appointment of the morning, fast overnight (water allowed) and leave off Levo for 24 hours. This gives the highest possible TSH when looking for an increase in dose or to avoid a reduction, but it also gives continuity of conditions so that results can be compared each time.]
There was also quite a big difference in your FT4 - going from less than half way through range at 16.1 to over range at 22.8.
These fluctuations will be due to the antibody activity. When the antibodies attack, the dying cells dump a load of thyroid hormone into the blood and this can cause TSH to become suppressed and Free T4 and Free T3 to be very high or over range. These are called 'Hashi's flares' or 'swings'. You may get symptoms of being overmedicated (hyper type symptoms) to go along with these results that look as though you are overmedicated. Dose adjustment at these times can be made, and because these swings are temporary, when things go back to normal readjustment of dose should be made.
Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.
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.
Why was your T3 taken away? Was it the same endo who prescribed it originally or a different endo?
I'm assuming it was taken away because of our suppressed TSH? There was no need. In actual fact, these results
TSH <0.02 (0.2 - 4.2)
Free T4 22.8 (12 - 22)
Free T3 4.6 (3.1 - 6.8)
show that you could do with a higher dose of T3. Yes, FT4 is over range, but a small reduction in Levo could have been made and extra T3 added. You can't be overmedicated as long as FT3 stays in range, and any endo prescribing T3 should know this, if they don't then they don't know how to treat hypothyroidism and don't understand dosing with T3.
Suppressed TSH is not a problem. TSH is a pituitary hormone, the pituitary checks to see if there is enough thyroid hormone, if not it sends a message to the thyroid to produce some. That message is TSH (Thyroid Stimulating Hormone). In this case TSH will be high. If there is enough hormone - and this happens if you take any replacement hormone - then there's no need for the pituitary to send the message to the thyroid so TSH remains low.
Taking T3 will lower, and often suppress, TSH. Another thing an endo prescribing it should know.
**
Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies. I'll address that in reply to your post with the levels.
So, we know that Hashi's causes absorption problems and that can result in low nutrient levels. (Also, removing T3 can do this.)
Ferritin 44 (30 - 400) 1 ferrous fumarate for anaemia
A confirmed diagnosis of iron deficiency anaemia requires treatment with 2 or 3 x ferrous fumarate daily - see NICE Clinical Knowledge Summary for iron deficiency anaemia treatment (which will be very similar to your local area guidelines):
•Address underlying causes as necessary (for example treat menorrhagia or stop nonsteroidal anti-inflammatory drugs, if possible).
•Treat with oral ferrous sulphate 200 mg tablets two or three times a day.
◦If ferrous sulphate is not tolerated, consider oral ferrous fumarate tablets or ferrous gluconate tablets.
◦Do not wait for investigations to be carried out before prescribing iron supplements.
•If dietary deficiency of iron is thought to be a contributory cause of iron deficiency anaemia, advise the person to maintain an adequate balanced intake of iron-rich foods (for example dark green vegetables, iron-fortified bread, meat, apricots, prunes, and raisins) and consider referral to a dietitian.
• Monitor the person to ensure that there is an adequate response to iron treatment.
So you need to point this out to your GP and ask for an increase in your ferrous fumarate. Take each iron tablet 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.
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, although yours is a very wide range and I think 100-130 may be adequate.
You can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content. It can be a meal of liver, or you can 'hide' it by mincing/chopping very small and adding to casseroles, curries, cottage pie, spaghetti bolognese, etc. Also include lots of iron rich foods in your diet apjcn.nhri.org.tw/server/in...
**
Vitamin D total 27.7 (25 - deficiency) Taking 800iu D3
With your level, you should be having 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. Once these have been completed you will need a reduced amount (more than 800iu so post your new result at 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/
If your GP wont give you the loading doses, you can buy your own D3 and take 10,000iu daily for 4 weeks (280,000iu) then reduce to 5000iu daily and retest 3 months after starting. Once you've reached the recommended level, you'll need to find your maintenance dose as described above.
As you have Hashi's, when you buy your own D3 then for better absorption, because it bypasses the stomach, an oral spray is best eg BetterYou. It comes in 3000iu dose so you would need to take the closest to the doses I've mentioned above, ie take 9000iu to start with then reduce to 6000iu and retest at the 3 month point.
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
You may need testing for Pernicious Anaemia, you may need B12 injections. You definitely need folic acid prescribing but that must not be started before further investigation has been carried out and B12 started.
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."
**
So, for thyroid hormone to work you need all your nutrients at optimal levels. However, your Hashi's will need to be addressed and gut/absorption problems sorted so that supplements can be absorbed. Please check out SlowDragon 's reply to this post for information and links on how to help healthunlocked.com/thyroidu...
Your high antibodies is Hashimoto's, this 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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