Newbie with no Thyroid and fatty liver

[Yellowsky]

Hi all,

In 2010 I had radioactive iodine for nodules in the thyroid which were growing quite quickly and causing issues. My doctor said there wouldn’t be a lot of problems as I would just become a little,hypothyroid and it will be corrected with meds. A few weeks after treatment I began to pile on the poinds and still have a big gut today. I was put into 100mcg of Levothyroxine as Eltroxin. And was like that till the beginning of 2016 when I started to get heavier and more uncomfortable. I had a scan for something else and they looked at the thyroid and said it was gone totally. I nad bloods done a little while later, was found to be over medicated as they could not get my dose right, I am either T4 heavy or TSH heavy. I was also deficient in Vitamin D and B12. 18 months ago I had a scan of my liver and it was clear with a lesion but they said it was nothing to worry about. My thyroid meds were reduced by 25mcg. So I have 100mcg one day and 75mcg the next and so on. I had a scan of my liver in March 2018 and it showed fatty liver. My GP dismissed it as being something everybody has and that there was no cure. Except I knew that good eating can sometimes reverse it. He has been very obstructive for a while and I cannot change doctors as there are none in the surgery except him, no other practices are taking on new patients in the area as they are overloaded. In desperation I went to see a private hepatologist who says there is a link between thyroid and liver and I also have cholesterol gallstones, all problems ai have never had in my life till the thyroid was obliterated. He wants specific blood tests to see what is causing the fatty liver and a CT scan to look at the liver lesion. If my GP starts being obstructive over letting me have these tests then I’ll have to go back to the hepatologist and have them privately which will be around £1000. I know I should not have to pay this but it is the only way I can get what I need withiut having to jump through the ridiculous and long winded hoops my GP puts me through each time I need anything. The reason I went cross country to the private guy was for a Fibroscan which came back with a reading of stiffness at 5.5, he said anything under 8 is good. I am working on reversing the fatty liver and still waiting to see a dietician. Sknce I have stopped having my little glasses of wine at the weekend and dropped chips, crisps, chocolate, white bread, rice, flour, pasta, my cholesterol has fallen from 6.4 to 4.6 and ai have lost a stone. Not bad for being hypothyroid. I have stuck at just under ten stone, so I think that is it except for the big tummy which I cannot get to go down. Once the hepatologists letter gets here I will make a decision as to whether to attempt going via the GP for these things or going back to the hep guy and doing it there.

[shaws Administrator]

Welcome to our forum and thank you for your background history. If you copy and paste it into your Profile page, it is helpful in future for members to look at in future if they want to respond to any questions.

You've done excellently well with your diet.

I shall give you a link to 'symptoms' and I am sure you will tick off more than a few. A higher cholesterol level is one of the symptoms and as our thyroid hormones are increased it should begin to reduce without the doctor prescribing for it or blaming us on the kind of food we eat.

I just wonder what doctors would think if we removed their thyroid gland and we stated " there wouldn’t be a lot of problems as you would just become a little,hypothyroid and it will be corrected with meds"!!!!

All your blood tests for thyroid hormones have to be at the very earliest, and allow a gap of 24 hours between your last dose of hormones and the test and take afterwards. You should not eat before the test as food lowers the TSH and that's all they seem to take notice of.

Your doctor should also test B12, Vit D, iron, ferritin and folate as everything has to be optimal. Always get a print-out with the ranges of the results, so that you can post if you have a query. We need ranges as well as the results as labs differ in their machines.

thyroiduk.org.uk/tuk/about_...

If we are on an optimum of meds we should have no clinical symptoms.

A Full Thyroid Function Test is TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. GPs don't usually do more than TSH and T4 but if you want, we have two private labs which will do those GP doesn't.

[Yellowsky in reply to shaws]

Hello,

Sorry for the delay. I always take the thyroid meds before the blood tests, so that’s where I’m going wrong I think. Will have them done again in a couple of months.

Results

SERUM LIPIDS says normal - no action- but assess cardiovascular risk as described in NICE Guidelines CG181. GP has not addressed this.

Serum cholesterol 4.6mmol/L

Serum HDL cholesterol. 1.1mmol/L

Serum cholesterol/HDL ratio 4.2

Serum triglycerides 1mmol/L

Calculated LDL cholesterol level 3.05mmol/L

Serum non HDL cholesterol level 3.5mmol/L

Liver Function Test is normal, no action.

Serum total protein 67g/L range 64-83

Serum albumin 43g/L range 35-50

Serum globulin 24g/L range 20-35

Serum bilirubin level 10 umol/L range <22

Serum alkaline phosphatase 100u/L range 30-130

Serum ALT level 35u/L range <50

THYROID FUNCTION TEST

T4 just above range

Serum TSH level 1.5mIU/L range 0.4-5.0

Serum free T4 level 21 pmol/L range 9-19

SEEUM VIATMIN B12

False normal then says abnormal, no action. 1423ng/L range 189-883

Last blood test showed I was >2000 ng/L then fell to 1000 ng/L before climbing back up to 1423ng/L

VIT D not checked even thiugh it was requested, the GP is now getting it done.

At the time when I was found to be over medicated with thyroxine, the doctor told me that I needed B12 and Vit D checking and I was deficient in both. I now take Vit D tablet each evening as I am indoors most days due to disability. I am not taking B12.

About 18 months ago, GP started to give B12 injections over five weeks with no blood tests in between as my B12 was very low. I went back to have more after 3 months. On this occasion I felt extremely unwell and very sick, head was pounding. My new hep guy said it was because there was too much of it in my system and I would feel very ill but the GP just dismissed it. My B12 is now all over the place and I did have a private B12 done a while ago and that too says I was top heavy with it and it appeared I was not absorbing it. I have asked for a referral to a haematologist and my GP is investigating who would be the right person to ask, but I know him too well and this is a delaying tactic to hope I forget about it. I have it on the calendar to make sure he does what I need him to do. He is a nightmare, I will keep on at him until he sorts it out.

I hope I’ve answered the questions fully as I am so new here, hope I have replied to the right questions too. I would be grateful for the info on private blood tests, if they are not too expensive as I am having major spends on private scans this month.

Thank you so much for your help and support.

[SlowDragon Administrator in reply to Yellowsky]

You need folate tested to.

B12 and folate work together. Ask GP to test. Or just self supplement a good vitamin B complex with folate in, not folic acid

Can you get ferritin tested too through GP

Private testing for TSH, FT3 and FT4 plus antibodies. Is cheaper option, £79 or £59 when on offer

[SlowDragon Administrator]

Can you add your most recent Thyroid test results for TSH, FT3 and FT4. Also have you ever had thyroid antibodies tested. Plus vitamin D, folate, ferritin and B12 are essential. Add results and ranges if you have them

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, 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 articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

[e-mail]

Professor Toft recent article saying, T3 may be necessary for many. Note especially his comments on current inadequate treatment following thyroidectomy or RAI

rcpe.ac.uk/sites/default/fi...

Many on here, even after thyroidectomy or RAI find a strictly gluten free diet can help. Something to consider too, especially if you did ever in past have high thyroid antibodies

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers. £99 or sometimes on offer for £79

All thyroid tests should ideally be done as early as possible in morning and fasting.

If on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

[Yellowsky in reply to SlowDragon]

Hi,

Just put all the tests ai have had in reply to shaws, but my GP never tests for ferrin, T3 or anything like that so private tests would be the way to go I feel, as long as they are not too expensive as I have a lot of major spends with private scans these next few months.

[SlowDragon Administrator in reply to Yellowsky]

Often full testing is on offer at £79. Usually £99

Plus £25 if you want private blood draw rather than DIY finger prick test