Thyroide confusion

[Charles51]

I have had an underactive Thyroide for over 10 years. I am a 66 year old reasonably fit woman but since early this year I have felt wiped out. Without any reason whatsoever I have put on half a stone. I went to my doctors and had blood test and had my Levithyroxine reduced from 100mg to 75mg. I have started to become lightheaded when rising in the morning and despite watching carefully what I eat , I have lost no weight whatsoever. Doing a bit of research on line I am looking at Adrenal Fatigue. Has anyone experienced anything like this or had any advice ? Thank you.

[RedApple Administrator]

Welcome to the forum Charles51. Can you please post your latest thyroid blood test results. This will help members to understand why your levothyroxine dose was reduced.

[Tinacros]

I think adrenal fatigue causes weight loss. I can relate to the dizziness though. I’ve been getting it for the last month. Not been to the docs about it yet. I’m also getting lots of pains in my calf’s and thighs x

[Lalatoot]

Charles It could be that your usual dose of levothyroxine was no longer enough for you. However the GP reduced your dose. This may have made matters worse.

To be able to help we would need to see the blood test results.

[SlowDragon Administrator]

First thing is, do you have any actual blood test results? if not will need to get hold of copies.

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone 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.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

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 if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Do you have Hashimoto’s

Ask GP to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose 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)

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus ultra vitamin

medichecks.com/products/thy...

Medichecks often have special offers, if order on Thursdays

Thriva Thyroid plus vitamins

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes vitamins

bluehorizonbloodtests.co.uk...

[Batty1 in reply to SlowDragon]

I noticed SD a lot of people post questions and others answer them or ask follow up questions they original poster never actually answer them.. seem more rampant lately

[SlowDragon Administrator in reply to Batty1]

Annoying isn’t it!

[McPammy]

Have you had your T3 checked as well as T4 and TSH. I found after 11 years on Levothyroxine alone that I also needed T3 medication. I put on lots of weight even though I was eating only 1200 calories a day. I was also dizzy at times but my main issue was fatigue. I also did the DIO2 gene test through Regenerus Laboratories privately. I am positive. You could check yours to be sure. DIO2 positive means you are a poor converter of T4 to active T3. T3 is critical for well being.

I hadn’t even heard of DIO2 or T3 before I got quite bad and then became a member of Thyroid UK. The NHS didn’t have much of a clue either. I went private only in the end and was diagnosed within 2 consultations as needing T3 medication. I wasted a lot of time and my life waiting for the NHS to help me. My 9am cortisol was very low. But it wasn’t my adrenals as I had a synacthen test, it was the lack of T3. My T3 was only 8% through the range whereas my T4 was 95% through the range. This was clear I was barely converting. Your body needs plenty of T3 to function in all sorts of ways, this includes adrenal function. My cortisol bloods are now really good since starting T3 medication

Since starting T3 I feel 10 years younger, full of life and now lost the 2st I put on plus I’ve lost a further stone. I feeling fit and full of energy now. It’s been quite unbelievable.

[Nessy50 in reply to McPammy]

Do you get that on the NHS? I know it’s difficult getting the test never mind T3. My Endo told me to source my own, I take NDT anyway. How much is that test please & do NHS even consider it?

[McPammy in reply to Nessy50]

The NHS don’t test DIO2. A lot don’t even test T3. Well if you’re on NDT then you’re probably getting your T3. Google Regenerus Laboratories. There are two options. One will send your results to your chosen medical practitioner, this costs less. Or second choice is to have a person call you with the result. It’s all private. I chose the second option. Once I knew I was positive I made an appointment to see my GP and took a copy for them which is now scanned on to my NHS file. My NHS Endo who was very reluctant to prescribe me T3 medication now does. He wasn’t happy but I now get T3 off the NHS. They can’t argue with the facts. My facts only 8% T4 to T3 conversion in blood tests and a positive gene DIO2 result.

[Nessy50 in reply to McPammy]

Thanks sorry I meant T3 on NHS & know at times they’re only interested in their own tests. I’ll take a look yes taking T3 but I have to treat myself. I keep thinking T3 would help my Mum so that test might be worth doing if it proved to NHS she needed it then they would hopefully prescribe. Endo I saw was useless, TSH obsessed & not interested in other levels that matter was struggle to get T3 tested. Great you’ve found T3 is the answer.

[Tinacros in reply to McPammy]

My t3 in my last test was 2.69 and my t4 was 10 and my tsh non existent. I was on 12.5 mg of t3 and 50mg t4. I’ve upped my t4 slowly to 100mg, my last GP test was T4 18.1 tsh really low (abnormal) they don’t test t3...I have now stopped t3. My sweats have stopped and I feel better. I’m waiting a few weeks, and then having private ones done again. I’m sick of going around in circles lol. My weight has increased over the past 18 months but that is since I’ve been on T3. I’m so confused 🤷🏽‍♀️

[McPammy in reply to Tinacros]

It’s difficult to comment on your T3, T4 and TSH results without the ranges. Do you have your ranges for these.

[Nessy50]

I’d definitely get your B12 tested I have coeliac, so don’t absorb B12 & many have b12 deficiency too although get copies of everything because Drs aren’t going at diagnosing it & people struggle on. Mine was missed & got worse for years.

[BonnieG123]

At 17 I was diagnosed as hyperactive. At 40 and gaining weight rapidly, I was diagnosed as hypoactive. Difficulty in getting the right dosage over a few years but finally got the correct dosage and have been on synthroid now for 35 years. Weight is still a problem that I can’t solve but other people are now more important to me than my self image. I do try to eat healthy but this pandemic has not allowed that.

I have not heard of adrenal fatigue but will look into it. Hoping that you feel better quickly. Hugs to you!

[Charles51]

Thank you for your good wishes. I am currently reading a book called The Adrenal Thyroide Revolution by Aviva Roma. It makes very good reading. Good luck on your journey to better health.

[SlowDragon Administrator in reply to Charles51]

Come back with new post once you get FULL thyroid and vitamin test results

If Vitamins are low conversion will be poor

Getting vitamin levels optimal is first task

Plus fine tuning levothyroxine dose

As you can see from many comments on here...often it’s still necessary to get T3 prescribed in the end...but ducks 🦆 🦆 🦆 need to be in row first