High TSH (22.2) T4 normal?: Hi, I'm currently off... - Thyroid UK

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High TSH (22.2) T4 normal?

Michaela_l profile image

Hi, I'm currently off work as I keep feeling faint, some tachycardia (which I know doesn't add up, if I do in fact have hypothyroidism), feeling exhausted and generally feeling not normal. My TSH has been raised previously a few years back (around 5), but I've never been diagnosed with an under active thyroid. I'm wondering if anyone else has had these type of results? I was told to wait 3 weeks to then repeat the blood tests...so I'm sat here not knowing what's going on. Had years of this type of thing, on and off, and I'm now at the point were I just want to find out and get on with my life.

Any experiences and help will be appreciated.

Thanks

19 Replies
shaws profile image
shawsAdministrator

I am really sorry your doctor has told you to wait another three weeks before doing a confirmatory blood test. He probably thinks a virus is causing you problems at present.

The fact that your TSH is way above 10, you should have been prescribed levothyroxine and diagnosed as hypothyroid.

No wonder you feel ill - you state 'some tachycardia'! No wonder your body is struggling for the want of thyroid hormones our heart and brain need the most T3.

You will not yet be familiar with thyroid hormones. There are two - one called T4 or thyroxine. The other T3 (liothyronine). T3 being the only active thyroid hormone and we have millions of T3 receptor cells which need T3.

Levothyroxine (T4) converts to T3 and we should have an optimum dose.

In other countries people are diagnosed when TSH goes above 3.

This is a list of clinical symptoms. Your GP should also test B12, Vit D, iron, ferritin and folate. We need everything optimum.

Tick off your symptoms and ask GP to prescribe 50mcg of levothyroxine and tell him you've been suffering for years.

Also ask him to test thyroid antibodies. If you have antibodies, you will have the commonest form of hypothyroidism, called an Autoimmune Thyroid Disease - aka Hashimotos'. Going gluten-free can help reduce the antibodies and the attacks on your gland.

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

Michaela_l profile image
Michaela_l in reply to shaws

Hi, thank you for the reply. I am going to ask them to test my b12 anyways as I had a fair amount of bowel taken away as a baby, which could mean I don't absorb it as I should. I hate feeling like this; I'm currently not safe to work. I work in the operating theatre so as you can imagine, I'm a bit of a danger to myself and others.

I called the endocrinology receptionist earlier and they told me the consultant may only see me as an emergency if my levels look abnormal, and if not I'll get a routine appointment in July/august...I explained I'm getting married in August and I don't feel safe going on honeymoon. So I felt like I needed to reach out to this community for support. I'm feeling quite down and frustrated about the whole thing.

I believe my mother's kidneys failed at a young age due to an auto immune issue..so maybe this is what happening regarding my thyroid.

Thanks again for the reply. Muchly appreciated.

shaws profile image
shawsAdministrator in reply to Michaela_l

There's no need to be afraid of thyroid hormones if we need them in order to function. It is very frustrating that the medical profession has 'frightened' us into conforming with levo only. The don't appear to read up-to-date research.

The Researchers who did resarch on the combination T4/T3 had their paper accepted that many patients feel much better with a combination of both.

I give up on the medical profession with regard to diagnosing/treating people who are hypothyroid as it sounds to me like a "made up of standard responses".

My mother had pernicious anaemia. She had injections for years until the doctor told her she now needed no more B12 injections. My sister and I were delighted. Little were we aware of the disaster which was going to befall her and the whole family in a couple of years. Neglect and dis-information. We have to do our own research and ask questions.

If I were you I'd get my own home pin-prick tests. Blood draw at the very earliest, fasting - and if you were taking thyroid hormones you'd allow a gap of 24 hours. Make sure you are well-hydrated before blood draw.

You can source your own levothyroxine or liothyronine, or NDT. Just put up a new post asking for a Private Message to be sent to you of where to source authentic thyroid hormone replacements. You want to feel at least half human for your marriage.

Get TSH, T4, T3, Free T4, Free T3 and thyroid antobidies. As early as possible, fasting (you can drink water). If taking thyroid hormones, you'd miss the last dose and take after test.

GP should test B12, Vit D, iron, ferritin and folate.

In the link below you will realise how hypo you really are:-

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

Hey, I might go tomorrow to get bloods done, rather than wait the 3 weeks as advised. Would it dangerous sourcing my own hormones? Thanks

shaws profile image
shawsAdministrator in reply to Michaela_l

Definitely not. Because they withdrew T3 I buy my own. I am happy, well and symptom-free. I remained undiagnosed, despite clear symptoms (I even had an op to remove something from my throat) came round and was told there was nothing there. A first-aider mentioned thyroid - he saw my swollen gland - I felt so unwell he escorted me to plane and I went straight to the A&E from the airport. Kept in overnight and discharged, after running on treadmill, etc as 'probably viral with high cholesterol'. I thought I must be dying as I was so ill. Fortunately I'd already phoned and demanded a blood test form and next a.m. had a blood test at 8 a.m. and GP phoned and said 'who gave you a blood test form' I said "I did" she said come and get a prescription. She didn't say my TSH was 100.

shaws profile image
shawsAdministrator in reply to Michaela_l

This is a chapter from Dr Lowe (RIP)

web.archive.org/web/2010112...

Michaela_l profile image
Michaela_l in reply to shaws

Thank you

I wish my gp would sort this out; it was raised before but went back down apparently...but I've been admitted to hospital ( after falling ill at work ..the hospital aha) discharged after being told I have POTS then I had a funny do again, so readmitted for over a week..this is were the endocrinology consultant said repeat bloods in 3 weeks..I just want it sorting now! I've clearly had an issue for years...I'm sick of it. I wonder if I should just ask my gp to give me a prescription..or wait to see the endocrinology consultant....I'm not sure what's best.

shaws profile image
shawsAdministrator in reply to Michaela_l

Doctor's don't normally give a prescription until TSH is 10. You might be lucky if you approach your GP but if Endo didn't he probably wont.

Before blood tests and levothyroxine were introduced in the 60's I think. We were diagnosed upon clinical symptoms alone and given a trial of NDT (natural dessicated thyroid hormones). If we improved we stayed on it and were hypo.

Some GPs are afraid to go against the Endo but you can try.

Michaela_l profile image
Michaela_l in reply to shaws

Ye,they might just say wait to see them..just like I say, it's getting frustrating. But given that it's way above 10, you'd think they'd try me out on some hormone..

Don't think I could take dessicated thyroid.

So, after reading that link, is it now the norm to take both hormones, or just T3, as T4 doesn't really see much improvement?

Sorry for all the questions!

shaws profile image
shawsAdministrator in reply to Michaela_l

That's o.k. Our Researcher diogenes may respond as he and his team found that a combination suited people.

Michaela_l profile image
Michaela_l in reply to shaws

Ok thanks. Is his research available to read? Thanks

shaws profile image
shawsAdministrator in reply to Michaela_l

He will respond when he sees the alert he will get. His name has turned blue which means he will read the response.

diogenes profile image
diogenes in reply to Michaela_l

If you go on to the site "Frontiers in Thyroid Endocrinology" and then click on the panel at the left "most read" you will see by scrolling an article by Hoermann R and others. If you click on that it will give you links on the right side of the page to accompanying articles by the same authors. In these we discuss the whole concept of thyroid function and treatment options.

Michaela_l profile image
Michaela_l in reply to diogenes

Thank you :)

thyroidresearchjournal.biom...

Hey, this study published this year suggests that most of the population eith hypothyroid do not require both hormones...though I haven't thoroughly read the piece, I thought you might find it an interesring read.

SlowDragon profile image
SlowDragonAdministrator

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.

Yes absolutely essential to test vitamins As well as thyroid antibodies

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

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 money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. This gives highest TSH and most consistent results. (Patient to patient tip, GP will be unaware)

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. Low vitamins are especially common with Hashimoto's. Food intolerances too, especially gluten. So it's important to get tested.

Thanks for that :) I will see what happens tomorrow regarding various blood tests and if they don't want to do those tests I'll pay. Thanks again!

Just an update if people care to comment. TSH is now 26, high antibodies...normal free T4/3 so no thyroxin given..and I need to wait some more (sick of waiting!) to see endocrinology..who take ages. :'( so upset

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