Undiagnosed - many years later

[JaneHo]

and still have loads of symptoms my latest test results are TSH 2.3 (0.55 m- 4.7) T4 13 (10-25) and T3 4.4 (4 - 7), i note increase in TSH but all still in rangeanay advise for me please. I don't take any meds for thyroid, tks

[shaws Administrator]

Welcome to our forum and thanks for posting your history of which this is an extract:-

"Left thyroid lobectomy in March 2014 to remove benign thyroid nodule, pre and post op very symptomatic of hypothyroid but blood results all within range. I have managed after almost a year to get GP to treat my symptoms, although only offered a very low dose of T4 (25mg) "

The fact that you have been 'offered' a miniscule dose of 25mcg, (doctors have been told that the TSH should reache 10 (in UK) I would have accepted it. You should then have an increase of 25mcg every six weeks after a blood test till TSH is 1 or lowr with FT4 and FT3 nearer the top of the ranges.

The fact that both your Frees, FT4 and FT3 are at the bottom of the range indicates that's the reason you don't feel well as we need both towards the top of the ranges, not bottom.

Doctors seem to be happy when everything is 'somewhere' in the range but not we who are hypo and need a TSH of around 1 or lower with the Frees nearer the top of the range. This is the procedure to follow with regard to blood tests:-

1. The earliest appointment, fasting (you can drink water) and allow a gap of 24 hours between last dose of levo and test and take afterwards. Also ask for thyroid antibodies to be test at your next test. Antibodies present would mean you have an Autoimmune Thyroid Disease and treatment is the same as hypothyroidism.

2. Always get a print-out of your results with the ranges and post if you have a query.

GP should test B12, Vit D, iron, ferritin and folate as all have to be optimum - not just in range.

The aim is a TSH of 1 or lower if we're on thyroid hormone replacements, and a FT4 and FT3 nearer the top of the ranges.

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

[SlowDragon Administrator]

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

If GP is unhelpful Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or 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 money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

[greygoose]

Your FT3 is very low, and does not correspond to your TSH. Have you or your doctors ever considered Central hypo?

Central hypo is when there is a problem with the pituitary (Secondary hypo) or the hypothalamus (Tertiary hypo), rather than the thyroid (Primary hypo). For whatever reason, the pituitary cannot produce enough TSH to stimulate the thyroid to make adequate levels of hormone.

[JaneHo in reply to greygoose]

Well just went back to GP as I am so tired, gaining weigh, cold, sore Thyroid area, feeling terrible all the time, depressed on a 2 week holiday in Portugal (I can't believe it I usually just live for my holidays), and what a waste of time I got 7 sleeping tablets!!!!! GP said my thyroid results were very good, I explained I had been doing research and my TSH should be 1 and my 4 and 3 levels at top of the range and he just poo pooed me all the way and at my request for liothyronine he said T3 was not being prescribed any longer. I feel worse now, he has offered me more blood test so will see if they fetch up any other explanation. I mentioned self medicating and he said go ahead I would continue to get my 15 month check up and that was it. Don't know what else to do.

[greygoose in reply to JaneHo]

Did you mention Central hypo and explain what it was? It's not that your TSH or FT3 should be anywhere, but that they should correspond, and yours don't. Doctors think that if results are anywhere in-range, they're fine, so we have to work hard to convince them otherwise. However, I doubt your doctor will ever have heard of Central hypo, so you have to know what you're talking about. Did you research that specifically?

[JaneHo in reply to greygoose]

No, I did not mention it specifically, (brain fog) thank you for reminding me I will research it also and ask when I go back to doctors, how do you know they don't correspond, what indicates this to you? any more detail you have so I can mention that also would be great, tks.

[greygoose in reply to JaneHo]

Well, Central hypo is when the problem is with the pituitary (secondary hypo) or the hypothalamus (tertiary hypo) rather than the thyroid itself (primary hypo). For whatever reason, the pituitary cannot produce enough TSH to stimulate the thyroid. So, the thyroid hormones get lower and lower, whilst the TSH stays low, instead of rising.

TSH - Thyroid Stimulating Hormone. In a healthy person, the pituitary senses when the thyroid hormone levels are getting low in the blood, and produces more TSH to stimulate the thyroid to make more thyroid hormone. Your FT4, and especially the FT3, are so low that in a normal person, the TSH would have risen quite a lot more - impossible to say exactly how much, though, because there's no specific, direct correlation, it varies from person to person. But, your TSH should be much higher considering how low your FT3 is.

Have you ever had a blow on the head? Or a scan of the brain which could have shown up a benign tumour on the pituitary? This really needs investigation by an endo - most GPs have never even heard of Central Hypo - because the pituitary produces a lot of hormones, not just TSH. And, if there's a problem with the pituitary, those other hormones will also be low. So, these can be tested for by an endo. He can also authorise a brain scan. It really does need investigation for that reason, or your hormones will just continue to get lower and lower, and cause more and more problems. And, self-treating with thyroid hormone replacement would not be the whole answer, because it would only give you thyroid hormones, not the others.

[JaneHo in reply to greygoose]

ok thank you this helps me understand more, no blow to the head but I have had a brain/ct scan before (long time ago when I took a funny turn/fit I was referred to a Neurologist) but no mention of benign tumour, I will revisit with GP re Central hypo and see if I can get anywhere but I am not hopeful not judging by this mornings visit. The blood test I got later today were for diabetes, thyroid, liver, ferritin and some others, what tests would I need to identify how my other hormones are fairing? thank you for all your help.

[greygoose in reply to JaneHo]

These two links might help you understand better:

endocrinologyadvisor.com/en...

pituitary.org.uk/informatio...

[JaneHo in reply to greygoose]

thank you

[greygoose in reply to JaneHo]

You're welcome.

[JaneHo in reply to greygoose]

Well I have been to two different doctors now and even after explaining all the above it is a no go they will not treat my thyroid or refer me. Reason all results are in range. In response to my tight throat which sometimes gives me a tight feeling in my chest they gave me glycerl trintrate and an ecg from which they determined I have slow heart rate and have referred me to a cardiologist. Too tired to fight this anymore but wanted to thank you for all your help.

[greygoose in reply to JaneHo]

They are so dumb, it makes you wonder who ties their shoe-laces for them.

The don't even know that a slow heart-rate is a hypo symptom. But, with a bit of luck, the cardiologist will know that. Make sure you show him your results.

I take it they were GPs you saw? Well, they wouldn't know, would they. Is seeing a private endo a possibility for you? But, choose your endo wisely, before you part with your money!

[Nanaedake]

As Greygoose has already pointed out, your results don't correspond. They are unusual. Are you taking any medication or supplements that may be confounding thyroid function? If you had a lobectomy, did you lose parathyroid glands? Have you checked out all vitamins including calcium and vitamin D?

[JaneHo in reply to Nanaedake]

Thank you for your replies I take magnesium to help sleep and constipation it works although I still wake many times throughout the night I also have HIGH BP I take 7.5 mg ramapril. I will try with doctor again but they don't know much about thyroid and are very reluctant to help.

[JaneHo]

Doctor put my parathyroids back after my op.