Thyroid : Just a bit of a moan really. I am on 7... - Thyroid UK

Thyroid UK
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Thyroid

Gillybabe48
Gillybabe48

Just a bit of a moan really. I am on 75 mgs for underaction thyroid. I really believe the care and attention for other diseases is so much better with regular checkups etc. But thyroid patients are given medication and the doctors say this will completely reverse the situation and check you every year. That is it. I still have good days and then very bad days. Sometimes I feel over medicated and other days under medicated. This one size fits all does not seem to work. Perhaps it is me. Can the thyroid levels still fluctuate even when medicated. My last test results were 0.86 TSH and 16 T4. and labs did not even bother with T3. Does anyone else feel the same?

11 Replies
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Oh yes, that is why this Forum is so good.

Most of the people here know more than your GP

I am sure you will benefit, good luck

SlowDragon
SlowDragonAdministrator

There are almost 100,000 members on here .....in large part because current care is so inadequate

Sounds like your levels are varying, this is common if cause is autoimmune thyroid disease

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's.

Just testing TSH and FT4 is completely inadequate

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

Ask GP to test vitamins and thyroid antibodies if these haven't been tested

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

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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

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

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

List of hypothyroid symptoms

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

Come back with new post once you have results and ranges. Members can advise on next step

Yes I know about food intolerances as I have so many things I cannot eat gluten and lactose being the culprits.

SlowDragon
SlowDragonAdministrator in reply to Gillybabe48

Then vitamins are perhaps more likely to be low, as gut is obviously affected

Have these been tested?

Ask GP to test vitamins and antibodies

Or private testing

Full Thyroid and vitamin testing via Medichecks or Blue Horizon is £99. Often on offer at £79

Plus extra if you want private blood draw, rather than DIY finger prick test

Getting vitamins OPTIMAL is often first step

No thyroid med can do other than temporarily make up the shortfall or absence of endogenous hormones, it's a treatment not a cure, so certainly can't "completely reverse the situation". It's akin to wearing glasses, whilst you've got them on, the lenses make up for any short or longsightedness but when you take them off your vision is still as poor; and that even with the glasses vision can vary day to day - for instance I have painless migraine which causes all sorts of visual distortion. The same with hormones, our system isn't static, and levels will be affected by all manner of things - poor nutrition, stress, antibodies etc. I'd say that the worst thing to do would be to have a GP involved in my blood test results more than annually, and I avoid that too, when I can. I much prefer their benign disinterest until such times as I invite them to be involved. We see here all too often, patients reporting that their GPs are constantly meddling with their doses, making them unstable and unwell. As has been mentioned, it's a possibility that you have Hashimoto's, have you ever been tested, and if so, what were your antibody results? It may be that you have to do what so many of us do, and have more comprehensive tests carried out privately, to get a better understanding of what might be going on.

Thank you for your help. Are the private tests expensive?

RedApple
RedAppleAdministrator in reply to Gillybabe48

Prices will vary depending on what you want tested and whether you do a fingerpick test or a venous blood draw. :) There's a good list of testing companies on the Thyroid UK website here thyroiduk.org/tuk/testing/p...

SlowDragon
SlowDragonAdministrator in reply to Gillybabe48

I use drop in private clinic (£25) on Medichecks (& Blue Horizon) list, then time of testing is under your own control. I get there for 8.30am, first in queue for blood draw at 9am sharp.

Take delayed Levothyroxine dose in car, before driving home, dropping blood test in main post office on way.

Results usually in your inbox 2 days later.

If taking any supplements that contain biotin, like vitamin B complex, you need to stop these a week before testing as biotin can falsely affect test results

If testing iron/ferritin, stop iron supplements a week before

I think by ‘reverse the situation’ GPs mean by taking Levo you will make up for the lack of thyroxine in your body, not that it will be a cure - which would suggest at some point you can stop taking it and your own thyroid will be restored. Hypothyroidism can be a temporary situation for some, but sadly, not for most of us.

And, as you know, unless the dose is carefully titrated and monitored, it fails to ‘reverse the situation’ at all and keeps a lot of people ill.

I have learnt so much from this site - it is here that you learn what you actually need to do to get better and the avenues for making the necessary changes. We all share your moan. It’s appalling that a chronic condition that affects so many attracts such scant attention and concern.

🤸🏿‍♀️🥛

Hi

As RedApple has said, depending on what you want to test prices are different.

For example:

I use medi checks and blue horizon for private bloods.

Medi checks offer TSH, FT3 & FT4 for £39.00, and you can do this via a finger prick test at home. If you enter THYROIDUK it should give you a further 10% off it, if it hasn't already been discounted, sometimes they have offers under the special offer section, and on Thursday's they offer thyroid discounts.

They also do other thyroid testing which includes Thyroid + anti bodies at £59.00, again a finger prick test or venous test.

Blue horizon offer all those tests, TSH, FT3 & FT4 currently £49.15, they offer a few more in dept tests (vitamins) where you can still do a finger prick test, where as medi check you need the test via venous.

For a venous test you have a couple of options, this is for medi checks. You can pay I think it is £59.00 for a home visits to draw blood, but, you can't really ask for a time and for thyroid it is best to do this as early in the morning as possible. This happened to me, I requested an early morning appointment and it wasn't the time I wanted, or, they have hospitals you can visit and it costs and extra £25.00. They are normally BMI hospitals, but if you phone them they can tell you which ones are on their books.

Blue horizon offer the same service, but the hospitals they had were not really local for me.

It is wrong that you have to do this all yourself, but, I want to get better so if it means self medicating, then I am prepared to do this, rather then to be chained to the NHS guideline on thyroid issues and being obsessed with TSH results.

Best Wishes

Peanut31

Medichecks is £39 for nurse to come to the house. I have had this done twice and both times were at the time I requested, the last one 2 weeks ago came at 8:45am. Not had any problems at all.

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