2 stone weight gain on levothyroxine. Please help me with blood test results

[vida_sana]

Hi everyone, I posted on here in Summer as I've been really struggling with my symptoms. Since then I have eventually been able to see an endocrinologist and he allowed me to get my blood tested- he said my T3 and other relevant things would be tested but after looking at the results which I picked up from the GP reception, T3's not on there. (I'm hoping the endocrinologist has these separately but I have detailed all my other results.)

I've been really struggling with my under active thyroid since I was 16 and I'm now 24 and things STILL seem to be getting worse.

I was put on levothyroxine from the age of around 17 as I was gaining weight extremely quickly and had severe hair loss. Blood tests confirmed that I had an under active thyroid. I started on 25mcg then soon moved up to 50mcg. I dedicated my life to losing weight and managed to lose 3 stone due to healthy eating and exercise whilst taking 50mcg of levothyroxine. I didn't notice much/ any difference from taking levothyroxine although my blood tests showed that I was now in the 'normal' level. I also often forgot to take my levothyroxine but the doctor said my levels were good. However as I had noticed no positive impact, I was then prescribed a higher dose of 100mcg. Initially I noticed no difference until over the course of around 10 months, I put on 2 stone!!! After being referred to a dietician and recording ALL my food and exercise everyday for over a month (I eat around 1,200 cals a day or less and run 5km four times a week) I was told my lifestyle is healthy and I should be losing 1-2lbs a week based on my diet and exercise, however I gained 3lbs within the month I was monitored.

THEN I clicked- my significant increase in weight gain only began when my dosage was increased to 100mcg! I stopped taking my levothyroxine completely as it was the ONLY thing which I had changed. I didn't take it for a month and then had a blood test which indicated that I should begin to take levpthyroxine again. As no doctor supported me or even believed me, I felt I had no choice and began to take 50mcg again. That's when I posted on here and was given the advice to get further blood checks. It has taken me 6 months to see an endocrinologist and to authorise further tests. He told me he would test T3 amongst others however I have the results back and there are no T3 readings. I will post all the results I have below (in advance, I am so grateful for all your help and advice, I appreciate it more than you will ever know)

Serum free T4 level: 15.8 pmol/L range (7.00-17.00)

Serum TSH level: 2.28 mu/L. range (0.20-4.50)

Serum ferritin 60 ug/L range (5.00-85.00)

Serum cortisol 266 mol/L range (215-560)- "Cortisol result does not exclude hypoadrenalism. If strongly suspected, suggest do short synacthen test."- I have booked to have this test done in a few weeks.

Serum zinc: 15.1umol/L range (10.00-21.00)

Serum IGF 1 level: 29nmol/L range (12-47)

Se thyroid peroxidase Ab conc <1 Kiu/L range (0.00-9.00)

Serum oestradiol level: 223 pmol/L ranges: (follicular 100-600) (luteal 100-900) (mid-cycle 500-1500) (post-menopausal <1500)

Serum prolactin level: 196 mu/L range (40.00-530.00mu/L)

HbA1c level- IFCC standardised: 29 mmol/mol range (20.00- 41.00)

B12/folate level:

serum vitamin B12 273 ng/L. range (145.00-910.00ng/L)

serum folate: 8.1 ug/L. range (3.0-20.00)

Gonadotrophin levels:

Serum FSH: 7.3 iu/L. range (2.50-10.00)

Serum LH 5 iu/L. range (1.50-13.00)

Thank you so much for your help x

[Cooper27]

Had you taken your medication before getting these tests? Your TSH is a bit high, as you want this to be below 1, but your T4 level is alright (although if you'd taken your medication before the test, this number won't be correct).

If possible, I think you should get your vitamin D level tested, as low vitamin D is common in thyroid patients, and low vitamin D causes weight gain.

[Longinthetooth]

Hi

I also have started to put weight on since the increase to 100mcg of levo. Like you my diet (gluten free) is good & hasn't changed. Someone has suggested to you to check your vit D level which is what I will try to do.

I believe it's definitely the levo. It's horrible isn't it?

[Peanut31]

Hi

You need your T3 testing, this controls your metabolism, weight etc.

Your TSH results need to be one or below in order to feel well, yours are too high

I would advise you do private blood testing on your TSH, T3 & T4 to see what’s going on, if your T3 figure is low, your going to struggle with your weight no matter what you do.

As already mentioned vitamins are important so got those tested as well.

Medi Checks do a finger prick blood test for TSH, T3 & T4, don’t take your Levothyroxine that day, and do it first thing in the morning. They will send your results via email.

It’s no good just testing TSH & T4, you need to see the whole thyroid picture.

Best Wishes

Peanut31

[Trendywends]

I can’t lose weight since being on levo. Had lost two stone doing couch 2 5km program before I’m was diagnosed. Now doing half marathon training along side circuit training and still my weight won’t shift. It’s the most frustrating thing about being under active. Doctors just don’t listen and they just say well your in normal range now!

[Jodypody]

T3 is the key. Your tsh is too high so you’re clearly not on enough medication so stopping or taking less is not going to help

[Bramble83]

What time was the blood test taken? If that’s an 8-9am test then your cortisol is too low.

[shaws Administrator]

It looks to me that you've been on a starting dose since you were diagnosed. That's why you feel unwell. The aim is to get the TSH to 1 or lower but, if in the UK, those who are supposed to be trained assume that when the TSH is somewhere in the range (up to 5) that we're on a sufficient dose.

They will tell you when you've had a blood test that 'you're normal'. Normal to them means 'somewhere' in the range - even the top and the suffering continues.

They are not interested in relieving clinical symptoms and they also know none.

For some people levo isn't increased or it doesn't suit some patients who do better on a T4/T3 combination or NDT.

Unexplained weight gain is one of the commonest questions. Levothyroxiine is known for increasing weight but probably due to not being on a sufficient dose or the person's body just cannot deal with synthetice hormones.

Many improve on a T3/T4 combination but they've stopped prescribing T3 in the UK.

I think many doctors/endocrinologists look at the patient and they ALL assume it's the patients' fault and due to a bad diet but they are so wrong.

This may interest you:-

stopthethyroidmadness.com/h...

Longinthetooth

[Muffy]

It might be worth you reading ‘A counterblast to guidelines ‘ by Dr Anthony Toft (former physician to the Queen when she was in Scotland).

[Alma1960 in reply to Muffy]

Dr Toft workef st Dundee uni until he retired i think in 2009 His writing on understanding hypothyroidism is excellent and in my view understandable

[Bearo]

Your B12 is too low - it’s recommended to be over 500. Some people can take a few months B12 supplements and then stop because the body can hold B12 for a long time once it’s topped up. Others have to supplement continuously.

Having taken supplements You can only retest B12 a few months after stopping the supplements.