Dosage reduction

[DelicateInput]

I have the same problem as a lot of others. I had some blood tests done at a new GP surgery. I only wanted cholesterol done. However, they did a TSH which came up as 0.22, the same as it was when I saw private endocrinologist in April and he was fine with that. However, the automatic comment from the lab is that I am over medicated and it should be a minimum of 0.28, so the GP wants to reduce the dose. I said I prefer to wait to see endocrinologist again. I have enough tablets 100 mcg from surgery for two months plus six months 100 mcg that I bought abroad. Any advice would be appreciated. They do get on my nerves, especially when I have paid out privately because the NHS did not perform.

[SlowDragon Administrator]

Refuse to alter your dose

Explain your under care of endocrinologist

Were Ft4 and Ft3 tested

If not get FULL thyroid and vitamin testing done yourself

Assuming Ft3 is within range, vitamin levels optimal and no symptoms of being over medicated leave dose as is

[DelicateInput in reply to SlowDragon]

Thanks. No T4 and T3 not tested and I have already said (by text) that it depends on them as well and I prefer to stay on 100 mcg and will see endocrinologist again next year. He was really pleased with the 0.22 TSH result in April.

I have awful trouble trying to get the blood out of my thumb myself so will have to go somewhere to get the tests done. I do have a supply of tablets to fall back on and will see endocrinologist early next year and get a year's supply off him because they are so cheap (US$28 for 6 months abroad).

I really have enough to worry about without this. I do wonder if the thyroid affects the kidney because other women I know who have low gfr, like me, have a long history of failure to treat an underactive thyroid. My gfr is 59 - it dropped suddenly from over 90 about ten years ago. My friend's is only around 30.

[SlowDragon Administrator]

Is your hypothyroidism autoimmune?

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

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)

On T3 - day before test split T3 as 2 or 3 smaller doses spread through the day with last dose 8-12 hours before test

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

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

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/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/wp-content/up...

Tips on how to do DIY finger prick test

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

[DelicateInput in reply to SlowDragon]

I think it is autoimmune as I also have RA but I have never had antibodies.

[serenfach]

The GP cannot overrule the Endo. Just refuse.

[DelicateInput in reply to serenfach]

Thanks. He is a private endo though and the GP is NHS. I just wish they would be honest and say they don't want to fund it. There are a couple of potentially serious issues on the blood test results, eg reduced kidney function and questionable high bad cholesterol but they chose to ignore those, again because I can only imagine on cost grounds. The difference in my result and a normal one is 0.22 v 0.27 (moved 0.01 since yesterday). At 0.05, it is neither here nor there. They know all this but just do not want to pay anything. If they continue this way, I will just come off their books. There is no point having a GP if you cannot access treatment. They can then just get paid for the people they are willing to treat.

[serenfach]

My creatinine levels are always way over the top of the range, nothing said. ( I had a kidney removed 17 years ago). My TSH is usually around 0.01, with my T4 just sliding into the bottom of the range, but they dont look at the T4, just have hissy fits with the TSH. Vits 1 point below range - ignore!

They are even less likely to ignore a private Endo as they are considered higher than NHS endos, as they actually may know something about the thyroid. I would keep on the books with the GP, just dont go unless absolutely necessary.

[DelicateInput in reply to serenfach]

Thanks for the advice. I do wonder if all the fairly healthy people came off GPs books what they would do because they could not survive on just having severe cases.

My creatinine level is abnormal and has been for a few years. The red blood cell count and haematocrit are also abnormal, and both have been getting higher very slowly over the last few years. However, this time the red blood cell count appeared as normal - I have been taking garlic in tablet form, which is a blood thinner. I assume both are due to impaired kidney function as the gfr is 59. It dropped suddenly from 90 to 60 about ten years ago. A friend has the same issues and she also has hypothyroidism. Like me, there was a long delay in thyroid treatment (20 years). Her kidneys have now reached a critical stage with a gfr of about 30.

[Gingernut44]

I notice that you say you can’t get blood out of your thumb! The thumb is not the best digit to use 😊 You should try your ring finger just down from the tip and to the side, closer to the nail. Milk your finger rather than squeezing it.

[DelicateInput in reply to Gingernut44]

Thanks. That would help me a lot because I could do my own blood tests. I had to get a cholesterol test from the NHS GP surgery this time and I wish I had not bothered. Last time I wanted a set of thyroid tests, the phlebotomist drew the blood for me but this was because I was there for tests anyway. I would like to monitor thyroid, cholesterol and other things myself.

[Gingernut44]

I think there may be a pinned post giving tips on the best way to do a finger prick blood test.