Hi new here and newly diagnosed. I was found to be hypothyroid this August by an endocrinologist with a TSH of 33 (0.2 - 4.2) and free T4 10.7 (12 - 22) and started on 50mcg levothyroxine. Exactly 6 weeks later and my repeat test shows my TSH 4 (0.2 - 4.2) and Free T4 13.1 (12 - 22) done at the same time of day, fasting and leaving levothyroxine 24 hours from blood draw so now normal with no dose increase.
My question is, is 50mcg levothyroxine the dose I will live on? Is thyroid disease really as simple as this? I don't feel normal with cold hands, tiredness throughout the day, feeling unsteady and dizzy so am I going crazy and will I be living with these symptoms for the rest of my life? GP says I more than likely will.
Thank you in advance
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Amandatc
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Hi - other more experienced readers will advise you properly but even I know that you should be given a higher dose of the levothyroxine so that your TSH goes down to between .5 and 1.5 so the doctor should put up your dose to 75 mcg.
Also you need to check your levels of Vitamins B12, D and folate and ferritin as people with hypothyroidism often have stomach problems which stop them absorbing vitamins and minerals. I found that when I supplemented with the above I felt much better.
Amandatc All vitamins and minerals need to be optimal for thyroid hormone to work.
Ferritin 17 (15 - 150)
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. As your level is so low you should ask your GP to do an iron panel and full blood count to see if there is any anaemia.
You need an iron supplement which hopefully your GP will prescribe. An iron infusion would be best as it will raise your ferritin within 24-48 hours whereas tablets will take many months. If prescribed tablets, 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 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...
You should post on the Pernicious Anaemia Society forum for further advice and then discuss with your GP healthunlocked.com/pasoc
You will probably need testing for Pernicious Anaemia and may require B12 injections. If you are prescribed folic acid don't start taking it until other investigations have been carried out.
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Vitamin D 34.1 (>75 adequate)
Taking 800iu vit D since 2012
Please ask your GP the following question:
"As I have been taking Vit D for 5 years, why is my level still so low, I believe it is in the deficient category"
If your level was below 30 when you were originally tested and given 800iu, you should have been given loading doses as per the guidelines - 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 if he can now prescribe the loading doses. I have a feeling he may not due to your current level. If he does, lthen once these have been completed you will need a reduced amount (not a paltry 800iu) 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 current 800iu D3 isn't going to ever raise your level, as you've probably realised. It is hardly a maintenance dose for someone with a reasonable level.
If you can't get more from your GP then just take this into your own hands and buy your own supplement.
Come back and tell us what yourGP is going to do and we can suggest what to buy and the dose if he doesn't give you enough.
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
The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it is needed for FT4 and FT3 to be in the upper part of their respective reference ranges if that is where you feel well, that is what you should aim for.
If GP wants to keep your dose where it leaves you just somewhere within range rather than at a level where you are optimal, then use the following information from thyroiduk.org.uk/tuk/about_... > Treatment Options:
"According to the BMA's booklet, "Understanding Thyroid Disorders", many people do not feel well unless their levels are at the bottom of the TSH range or below and at the top of the FT4 range or a little above."
The booklet is written by Dr Anthony Toft, past president of the British Thyroid Association and leading endocrinologist, available from pharmacies and Amazon for £4.95.
Also:
"Dr Toft states in Pulse Magazine, "The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the article by emailing louise.roberts@thyrouduk.org to show your GP, print and highlight question 6.
I think hypothyroidism is a very poorly treated condition, very little time is given to it in med school (from what I've heard just one afternoon) and for some reason doctors seem to think it is a very easy illness to treat and just taking a little pill every day cures everything. They have no understanding that TSH is only useful for diagnosing, and that it's the free thyroid hormones (FT4 and FT3) that are needed to be monitored post-diagnosis.
Sounds like you're not on the correct dose. I was on 50 mg and it was increased to 75 mg but it was the doctor who spotted from my blood test results that the medicine should be increased. You need to have a consultation with your doctor and explain your situation. Good luck
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