Hello everyone, I've been on Levothyroxin for 12 months. 25mg to start with then it was increased to 50mg in November when I went to GP because life was getting on top of me with symtoms of exhaustion and depression. I was retested in February THS1.6 and I was feeling a bit better. My GP said 50mg was too much and 25mg was not enough so I alternated between the two. At the beginning of May I crashed and could barely get out of bed. I saw a different GP who ran a lot of blood tests and told me to go back to 50mg a day. Results came back Vitimin D was 35 and TSH was 35. No increase in medication and was prescribed a high dose of Vitamin D. I'm new to this condition and I seem to be at its mercy.
What are people's thoughts on medication level and is there anything I could be doing to help myself. Thank you in advance
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Bendaisy2
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Bendaisy2 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. When your TSH was 1.6 there was no need to reduce your dose from 50mcg daily. In fact an increase would have been in order.
Do they only test TSH, not FT4 as well? Ideally we should have TSH, FT4 and FT3 to give a full picture but doctors unfortunately seem to be TSH obsessed and most dose by that result alone, keeping many of us very unwell.
As your TSH jumped from 1.6 to 35 when lowering your Levo from 50mcg daily to 37.5mcg average daily, that is a tremendous difference and I wouldn't mind betting that you could have autoimmune thyroid disease aka Hashimoto's, where antibodies attack the thyroid and gradually destroy it. As and when the antibodies fluctuate, so do symptoms and test results. Ask for antibodies to be tested. NHS generally only do Thyroid Peroxidase antibodies but there are also Thyroglobulin antibodies, and you can be negative for TPO but positive for TG antibodies.
As well as Vit D, it would be useful to have B12, Folate and Ferritin tested. All our vitamins and minerals need to be at optimal levels, not just within range, for thyroid hormone to work properly. If not already done , ask for those additional tests.
As for your medication level, you need an increase. Please email louise.roberts@thyroiduk.org.uk for a copy of the Pulse Online Magazine article by Dr Toft, leading endocrinologist and past president of the British Thyroid Association, which states:
"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)."
Print the article and highlight question 6 to show to your GP.
Change your doctors as neither know any single thing about how to treat a hypothyroid patient. They are a danger to you. You will have to take your health into your own hands, as many on this forum have had to do.
If you can afford a private blood test, we have recommended labs and I believe they also use pin-prick ones which can be done at home. I shall give you a link anyway for info:-
First, blood tests have to be done at the earliest possible, fasting, (you can drink water) and allow a gap of 24 hours from your last dose of levo and the test and take afterwards.
The aim of thyroid hormone repacement is to bring the TSH to 1 or lower.
The tests you need are TSH, T4, T3, Free T4, Free T3 and thyroid antibodies (unless your GP has already taken antibodies).
Request your GP to test B12, Vit D, iron, ferritin and folate and always get print-outs of your results with the ranges for your own records and so you can post if necessary.
Vits/minerals have to be optimum. TSH 1 or lower with FT4 and FT3 towards the upper part of the range. I shall give you a link and you will see why FT4 and FT3 is preferable to T4 and T3.
If you are unable to use a home test ask GP for a new blood test as you have taken advice from the NHS Choices for info on dysfunctions of the thyroid gland. If he does request, sometimes the labs only do TSH, T4 and T3. Your GP should do the vitamins/minerals.
Always get copies of your blood test results and the must have the ranges. Labs differ and it makes it easier for members to comment.
They will probably diss your info and tell not to take any notice off the internet. You can then tell him it is an NHS Choices site for info/help on dysfunctions of the thyroid gland.
We are not experts, only have had first hand experience of 'how not to do it' and recover our health.
PS Bendaisy2 What has your GP actually prescribed for your Vit D level? Loading dose are really necessary, followed by a maintenance dose. Generally GPs don't give enough.
Also, as they're not taught nutrition, they don't know there are important cofactors needed when taking D3. You can read about them here, and you will have to buy your own
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 comes in different forms, check here 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
By the way, take your Levo on an empty stomach, one hour before or two hours after food, with water only so that it is absorbed properly.
When having thyroid tests, which should always be done 6-8 weeks after any dose change, always book the first appointment of the morning, fast overnight (you can have water) and leave off Levo for 24 hours (take after the blood draw). This gives the highest possible TSH which is what is needed when looking for an increase in dose or to avoid a reduction.
Bendaisy2 So you have your loading dose, which is good. They can give up to 300,000iu in various ways and yours is good.
Is your GP going to retest after that?
I don't think 20,000 per month is enough for a maintenance dose. Taking a month as 30 days, that is giving you 666iu daily. The maintenance dose prescribed should be 800iu, it's in their treatment guidelines. However, even 800iu daily isn't enough. Most people require around 1000-2000iu daily maybe more depending on skin colour, sometimes less in the summer depending on sun exposure.
The recommended level for Vit D is 100-150nmol/L (although your GP probably won't know this, they think as long as it's in the Sufficient category then that is enough. You can check out the Vit D Council's website for recommended level and it says 40-60ng/ml or where the unit of measurement is nmol/L then it's 100-150.
Don't forget D3's cofactors, they are very important especially with large doses.
Thank you. Yes I'm due to have my Vit D retested in 6 months and my thyroid retested in about 5 weeks.
I saw the surgery nurse about 2 years ago and she said I had antibodies and will probably be need levothyroxin at some point. I think when I've done some more reading I'll get an appointment with my GP and have a long chat.
I wonder if my episode of depression and anxiety was down to my thyroid. I'm just in the process of weaning myself off Mirtazipine. Back in November I was quite ill.
Oh yes, depression is on the list of signs and symptoms of Hypothyroidism, as is anxiety - see Mental and Emotional here thyroiduk.org.uk/tuk/about_...
Whilst you are weaning yourself off your antidepressant, make sure you take your Levo as far away from it as possible.
As you have antibodies, then you are positive for Hashimoto's. Many Hashi's members have found that a strict gluten free diet helps reduce antibodies. Gluten contains gliadin which is a protein thought to trigger antibody attacks, read about the gluten/thyroid connection here:
Have a look around the ThyroidUK website as there's lots of information there. If your GP wants to know where you have got your information from, you can tell him the thyroid charity ThyroidUK which is NHS Choices recommended source of information for thyroid disorders.
Thank you Seaside and Shaw. It all seems very complicated and I am guilty of burying my head in the sand. I've just gone back to work after being of with anxiety and depression since November. If I knew what I know now I think it could have been managed better.
I will look at the imfomation you have given me and take some action. Thanks again
Back in November I had symtoms of severed depression and was prescribed Mirtazipine. I am now weaning myself off 30mg to 15 after alternating for 2 weeks.
Very many of us have had years of poor health & inadequate treatment before finding this wonderful support group.
Hashimoto's (high antibodies) commonly affects our digestive system, leading to "leaky gut" not someythst mainstream medics recognise really. But it can be the reason we get low vitamins and very common to find changing to a gluten free diet can help improve symptoms & may lower antibodies too
See Thyroid Uk website for lots of info including where to get private blood tests done
Also The Thyroid Pharmacist website has lots more info about Hashimotos, gluten, gut function and vitamins
Hi SlowDragon, I didn't know about leaky gut but I will read up on it. I have just ordered blood tests so it will be interesting to see what comes from that. I thought I was going crazy in November, I was not capable of making the simplest of decision and I couldn't even park my car and many symptoms leading to severe depression. I feel more optimistic now and I really look forward to feeling better and having a fulfilling life. This website is a godsend. Thank you for your contribution.
Lots of reading to do but well worth getting to grips with and loads of people on hear tobanswer any questions you have etc. you are no longer on your own and we know and understand how you are feeling-we have all been there!
Great advice on all nutrients and labs to run if you are sufficiently dosed . I would also add adrenals to be tested . Adrenals and thyroid work in Unisom .
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