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Diabetes & Hypertension Help Society
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Help dealing with thyroid conditions after diagnosis and what to do . What should I be asking GP to do, what questions to ask, what tests ca

Hi have been diagnosed with hasmito disease, been on levothyroxine since October 2018 still feel very unwell, extreme fatigue, severe painful joints, skin rash. Iam on 50 micro grams of the above drug. I am only 56 and it's affecting my daily life. I feel cold all the time.

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Hi

You may find more information and help on the thyroid forum.

healthunlocked.com/thyroiduk

I have Hashimoto’s and an underactive Thyroid and popped over on this forum as I’m having a diabetes test next week so I was looking at ways I can improve my diet.

Back to your post, you have been left on 50mcg of Levothyroxine for far too long, and you are only on a starting dose, this is why you feel so ill you are definitely under medicated.

First thing you need is your latest thyroid blood results. You are entitled to a copy of your blood results by law.

If you can’t access your results online (my surgery offers this, but you have to request this at the surgery) then go to reception and ask for a print out, you don’t need to see your GP for this. Don’t accept written results, and don’t be fobbed off, they are your results.

Once you have them post your results on the thyroid forum and members will advise you.

Please remember to put the lab ranges by the side of your results.

The normal procedure when on Levothyroxine is you start on 50mcg (if you are elderly or heart condition it’s 25mcg) you then increase by 25mcg every 6-8 weeks, having blood tests testing TSH, T4 & T3.

Testing TSH alone is no good.

It important that you have your bloods taken first thing in the morning, before 9am and don’t take your Levothyroxine before your blood, no eating and drink water only.

You keep increasing your Levothyroxine until your TSH reaches 1 or below and your T4 & T3 results are in the higher figures of the lab ranges, but, most importantly you feel well.

As you have Hashimoto’s people often go strictly gluten free, this helped me no end and I no longer suffer with tummy pains, bloating etc.

There is lots of information on the thyroid forum and you will soon learn sometimes GP don’t always know best when it comes to thyroid issues.

The thyroid forum has really helped me get my life back after my diagnosis.

Best Wishes & Good luck

Peanut31

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You should have had bloods retested after 6-8 weeks on 50mcg Levothyroxine

Has that happened?

If so can you add your results if you have them, if not will need to get hold of copies. You are legally entitled to printed copies of your blood test results and ranges.

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

If not been retested, see GP and insist of retesting

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially as you already know you have Hashimoto's

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Levothyroxine should be increased slowly in 25mcg steps until TSH is around one and FT4 in top third of range

Vitamins must be tested regularly and frequently need supplementing to improve to GOOD levels

ALWAYS get actual results and ranges on all tests

NICE guidelines saying how to initiate and increase Levothyroxine. Note that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine

cks.nice.org.uk/hypothyroid...

Do you have type one or type two diabetes?

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Hi, have you had a cat scan. I live in Canada and I had a cat scan when I saw my gp. I had 2 lumps the size of eggs on either side. My son was 5 at the time, he is 44 now. I saw a specialist and arranged for a radio active isotope and was put on levothyroxin. I don't remember the dose but it has been increased and for a long time it has been 125mg per day. I also suffer with RA for about 30 years. I have tried many meds for RA and my last med is Rituxan infusions 3 mths ago. I don't think it is working for me but waiting to speak with Rhumey as I was told I could have another infusion at 3 mths. Some people it can take 6mths even 12mths before it fully works for them. I am also steroid diabetes and trying to reduce the steroids. The diabetes specialist has reduced one med and once I stop the steroids completely he will stop another of my meds.

Everyone reacts differently to the medications so it can take awhile to find the right meds the work.

Good luck I hope they sort out your meds to help you.

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