Can anybody help

[Onedge]

Hi there

My TSH was 4.65 and my T4 11.

My doctor put me on levothyroxine

After 8 weeks I was suffering:-

Increase temperature

Increased pain

Increase lethargy heat intolerance and my salt craving went to sugar

I paid privately to see an endocrinologist

He said I had to decide whether to take Levo and increase my meds for pain

I asked ‘ what level do I need to be on?’ And he said at least 10

I’m very confused

I do not know whether the 50 mcg was now too low or do I need 25 mcg

I definitely felt better on levothyroxine. It has made my eyes, brain, heart , skin , generally I feel healthier but I’m in limbo

Can anybody advice me or has been in a similar boat

Oh just remembered my TSH went to 1.86( range -4.20) and my left sided neck lump and swelling in front of the throat went down

[Peanut31]

Hi

You were advised a few weeks back to have further bloods to indicate if you had antibodies present. Did you manage to get this done?

This could mean you have autoimmune disease (Hashimoto’s) and could be the culprit of your neck and throat issues.

As others have also explained you need an increase in Levothyroxine, 50mcg is a starter dosage. Normally you increase it by 25mcg every 6 weeks with blood tests in between testing TSH, T3, T4.

Best Wishes

Peanut31

[Onedge in reply to Peanut31]

Hi Peanut31

I was dumbfounded when my doctor forgot to test me so at 8 weeks I went in with the 6 thyroid tests yo b done and only tag was requested by doctor.I’m so atrocious at organising myself.

I think I will try the private finger prick test and I’ll get back to you. Will the doctor take notice at them

Thank you for the advice.

[Peanut31 in reply to Onedge]

Some struggle with the finger prick test, I know a few people that couldn't do it. I have always had bloods taken and arranged it at the local hospital (through medi checks) it costs me £25.00 on top of the test kit.

Best Wishes

Peanut31

[Onedge in reply to Peanut31]

Thanks I’ll ask them. Do chemists do them at all?

[Onedge]

Thanks I will get the blood test done I was so dumbfounded that the doctor didn’t trial me probably. He didn’t increase the dose and he didn’t do bloods until I went to see him and ask for them. I went into nurse with the 6 thyroid tests to b done and was gutted when only TSH came back. I will now try and organise myself into getting the tests done and will repost for advice then if I may?

[shaws Administrator in reply to Onedge]

So many members are very, very disappointed, when they expect the doctors or Endocrinologists to help and advise us. The main object once diagnosed, is to relieve clinical symptoms and get the TSH to 1 or lower.

Most on this forum, Do It Themselves, and have, with advice from members, self-medication and get their own blood tests.

You paid to see a private endocrinologist - came away from that consultation puzzled, especially at his statement:

"He said I had to decide whether to take Levo and increase my meds for pain".

I suppose he accepted your money for his advice but he didn't give any advice or assistance.

Make sure you are well-hydrated a couple of days before blood draw. It has to be the earliest and you also have to have a gap of 24 hours between last dose of levo and test and take afterwards.

You need TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

Your GP should test B12, Vit D, iron, ferritin and folate. All have to be optimum so that thyroid hormones work well.

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

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

Medichecks have a special offer of some sort every Thursday but Blue Horizon also do pin-prick ones. If you think you will find it difficult to 'do it yourself' I believe they can arrange for a blood draw. Maybe your surgery might do so.

[shaws Administrator in reply to Onedge]

You are correct to take someone with you. When we don't feel well at all, we cannot take all this argy/bargy with the professionals. All we need is sufficient thyroid hormones but they stick with the TSH must reach 10 before we're diagnosed. You've had lots of good advice and the NHS only stipulates TSH and T4 which doesn't do much for us whose TSH doesn't reach 10 and T4 also is not very informative..