Results but GP disagrees?! Help!

[Becster5]

Hi all, I have finally gotten my own blood tests done and the results from the private test, state I do have a thyroid issue. GP and consultant do not agree. I have all the symptoms and have for years and the tiredness is becoming a serious issue. Could I ask what you all think of my results and any advise you may be able to give? Anything would be really appreciated. Loosing the will here.....

Thank you in advance xxx

[SlowDragon Administrator]

Sorry you didn't get any replies

This is an extremely busy forum

Your results are clearly abnormal - low FT3 and relatively high TSH

Antibodies appear to be low but 20% of Hashimoto's patients never have raised antibodies

Could you get ultrasound scan of thyroid?

healthunlocked.com/thyroidu...

Have you had vitamin D, folate, ferritin and B12 levels tested?

[rachelleigh]

Hi Becster - I struggled to get any NHS doctor to recognise the results of private testing. You might get the NHS offering to retest - but their reference ranges are different. And where private testing looks at optimal health, the NHS criteria is different - and because I was technically within their reference range - they wouldn't treat me - even though I was right at the bottom of that range. Wishing you lots of luck in taking this forward - this is an excellent forum and it has helped me enormously to educate myself on this stuff. I've made a lot of lifestyle changes which have helped a lot. Good luck! x

[Lesleyg13]

Morning Becster5, my results were strikingly similar to yours earlier this year, see extract below from my first post on here with my results. I had a ton of symptoms from the Thyroid UK symptom list, and I knew I was gradually getting worse. I saw 3 different GP’s over 18 months or so about my increasing symptoms and reducing energy levels, and also paid to see one endocrinologist privately (turned out to be a waste of money).

Eventually one nice GP described me as having sub clinical hypothyroidism, based on my Medichecks results which included my below range FT3. She then admitted in the past she would have been able to prescribe levo, but not under current guidelines. I was quite relieved at that because at least she was admitting everything wasn’t normal. I was perfectly honest and told 2 of the GP’s that if they wouldn’t/couldn’t help me I would buy NDT from abroad to self medicate, as I was that desparate, which I did soon after.

I have spent hundreds of hours reading all the posts on here, and still learning every day. I made sure I was as well informed as I could be before starting to self medicate. That is what you would need to do if you consider doing down that route. Within days of starting NDT I felt an improvement in my energy levels, and now after 5 months most of my symptoms have improved a lot, many disappeared completely.

You may have read on here that unfortunately NDT is harder to get at the moment and the price has gone up a lot this year. You would also need to pay for private testing of TSH/FT3/FT4 while adjusting the dose to get the right levels, but at least that’s available for only £29 now. It’s obviously easier, and cheaper, if you can be treated by the NHS, but your TSH would probably need to get a lot higher before they would offer meds. On the whole (although not with everyone) thyroid function seem to deteriorate gradually. Personally I wasn’t prepared to feel as rubbish as I did for any longer than I absolutely had to.

As SlowDragon has said, you should try and get an ultrasound scan done. I didn’t know this at the time, so didn’t ask to have one done. You can at least ask your GP. One of my main symptoms was swallowing problems, choking on pills or hard food, so in hindsight you’d have thought it would have been done automatically. But of course like yours their all important TSH was within their range so it wasn’t considered.

Have you read on here already about when to be tested, early as possible in the morning, fasted from the night before with water only beforehand on the day? Also if you are still menstruating you should be tested mid cycle if possible as the TSH is much higher then.

As SlowDragon mentioned you should definitely ask your GP to test your vitamin D, folate, ferritin and B12 levels if they’ve not been done recently. If they won’t do them you should get them tested privately. When you have the results post them on here for members’ advice. Don’t take any notice of doctors telling you they are in range, the ranges are very wide and in range is not good enough.

Once those are all optimal, that may change your TSH as well. We need optimal levels of all of them to help with production of thyroid hormones, and to aid conversion of T4 to T3. A large number of us with hypothyroidism find we have sub optimal levels if not already supplementing.

If you do want to carry on with the NHS route I think you will have to make a bit of a nuisance of yourself at your GP surgery. I have found if you don’t go back they presume everything is fine, so you have to keep politely but persistently reminding them that you are most definitely not fine!

Post as many questions as you like on here, we’ve all been in the same boat and everyone here wants to help each other. So please don’t give up, there is still an awful lot you can do to help yourself.

My results from earlier this year:

“Free T3 is 2.65 pmol/l (range 3.1 to 6.8)

Free T4 15.5 pmol/l (range 12-22)

TSH 2.64 mIU/L (range 0.27-4.2) - I wasn't aware at the time about importance of the timing of the blood test, this was taken late morning and not fasted.

Thyroglobulin antibodies <10 kU/L (range < 115)

Thyroid peroxidase antibodies 12.1 kIU/L (range <34)”

[Lora7again]

Your TSH is too high and your T4 and T3 need to be higher so you need to start treatment. Unfortunately here in the UK Doctors will not treat you until your TSH is 10 because they like to let us really suffer. I have had 12 years of bad treatment by the NHS and I have now taken my own health into my own hands and self treat if I need to. You could wait years and years to be treated or you could do something about it now before you become really ill like I did. I was bed ridden for about 3 years and my GP would not treat me because my TSH was 0.80 even though my antibodies were 4000 and my hair was dropping out and my nails were becoming detached from their nail beds. His words were he would be struck off if he gave me a prescription for Levothyroxine because of NHS guidelines. I did tell him I had been prescribed Levothyroxine in the the past but he was having none of it. So I purchase Thyroid S from Thailand and self treated which helped me go into remission again.

What annoys me is Michael Gove's wife is being treated with NDT while we have to source ours from abroad. I might write to Sarah Vine who is a journalist and see if she will do a story about how thyroid patients are being kept ill by the NHS. Would she be interested? I have no idea ....