would be grateful for some help please

[Dorsetgirl17]

Have had pmr for 3 and half years and recently stopped taking steroids for the condition. Have been exhausted for two years and short walks leaves me breathless, nauseous and shaky legs., bit like car sickness. Bloods done by Doctor showed up 3 months ago, T4 16.9 and serum TSH level 7.7. Recent blood test showed it had gone up to 8.3 so have been put on 10 days ago, a two months trial of 2.5 levothyroxine. I have no idea what these bloods mean and wonder if these pills will eventually kick in? Thank you for any response.

[greygoose]

2.5 mcg levothyroxine? That is a rediculously low dose of thyroid hormone. A normal starting dose is 50 mcg which is increased by 25 mcg every six weeks until your symptoms are gone and you feel well.

Are you sure you don't mean 25 mcg? Even so, that's a low dose and could make you feel worse rather than better. But, I suppose, s/he put you on that dose because of your age. Is the doctor leaving you on that dose for 2 months? And calling it a 'trial'? Obviously you have a doctor that doesn't know much about thyroid. And the danger is that if it does make you feel worse, and you go back and tell them that, they will say 'oh, well, your symptoms are nothing to do with your thyroid' and take you off it. Which would be entirely the wrong thing to do.

TSH - Thyroid Stimulating Hormone - a pituitary hormone that instructs the thyroid when to make more thyroid hormone and when to ease up. But, when you are hypo - for whatever reason - your thyroid cannot respond, so the TSH gets higher and higher.

T4 is the thyroid storage hormone. But, to interpret the level, we would need the range - numbers in brackets after the result, if you have a print-out. Ranges vary from lab to lab, so we need the range that came with your result.

Putting a patient on a 'trial' of levo for two months is actually a nonsense, because it can take years to find the right dose - it will certainly take months. But with all hormones we have to start on low doses and increase slowly in order to give the body time to adapt. The chances of even 25 mcg levo being enough to make you well - and certainly not 2.5 mcg! - are very slim. You would need at least two increases in dose before you felt much improvement. So, one wonders if your doctor is not setting you up to fail. Doctors absolutely hate diagnosing and treating thyroid problems, and use any excuse to avoid it - especially if the patient is elderly. So, be on your guard, do not let any doctor talk you out of the treatment just because they don't know how to deal with it. Lie through your teeth: oh yes, doctor, I do feel a little better, but think I'd feel better still with an increase in dose. Or something along those lines. And don't be discouraged if, at first, it doesn't make you feel better, it's just that the dose is too low, not that you don't need it.

[Dorsetgirl17 in reply to greygoose]

Sorry I meant 25mcg. Thanks for replying so soon as I have not a clue regarding this condition only feel so awful, not myself, at all.

[Dorsetgirl17 in reply to Dorsetgirl17]

Serum free T4 level (xaErr9 ) result 16.9 p o/L (12.0-22.0). Does that help?

[greygoose in reply to Dorsetgirl17]

Yes, that helps, thank you. So, it's a bit on the low side, but your FT3 is probably lower. T4 (levo) is supposed to convert into T3, but hypos often have difficulty doing that. And, it's low T3 that causes symptoms, not TSH or T4. So, not surprising you feel awful.

When did your doctor tell you to go back for a retest?

[Dorsetgirl17 in reply to greygoose]

22 December

[SlowDragon Administrator in reply to Dorsetgirl17]

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

Low vitamin levels are also more likely as we get older

Request GP test vitamin levels and thyroid antibodies now

What vitamin supplements are you currently taking….if any

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Standard STARTER dose levothyroxine is 25mcg if over 65 years old, but you will need several further increases in dose over coming months

Dose usually increases in 25mcg steps

Unless extremely petite, likely to eventually be on at least 100mcg daily

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

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

See detailed reply by SeasideSusie

healthunlocked.com/thyroidu...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

[Dorsetgirl17 in reply to SlowDragon]

Thank you for your reply, gosh a lot to take in, my home work for this evening