Under active thyroid and HRT

[Skippy10]

Hi all, I have been having my bloods done approximately every 3-6 weeks over a 4 month period. I started on 25 Mcg and now at 75 Mcg of thyroxine. When I went on 75 Mcg I did feel a spike in how I felt, i.e. on the road to recovery. A few weeks in and I started to feel very tired again, my level has come down to 1. Something and GP wont increase as she said I will go over active. I've been on the lowest level of hrt for about two years, so she has suggested increasing that to see if it helps with how I feel. Would appreciate your thoughts?

[shaws Administrator]

Did you get the earliest possible blood test? Did you fast? Did you have a gap of 24 hours between the last dose of levo and the test and take it afterwards? If not your results will not be authentic.

75mcg is not a high does but get used to asking the surgery for a print-out of your blood test results with the ranges for your own records. Ranges are important as labs differ in their machines and the ranges may differ.

[SlowDragon Administrator]

First thing is, do you have any actual blood test results? if not will need to get hold of copies. You are legally entitled to printed copies of your blood test results and ranges.

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Just testing TSH 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

Have you had thyroid antibodies tested

Recommended on here that all thyroid blood 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, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

Is this how you do your tests?

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

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 primary hypothyroidism in Uk is due to Hashimoto's.

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_...

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

Guidelines on doseage is 1.6mcg of Levothyroxine per kilo of your weight

[Skippy10 in reply to SlowDragon]

Thanks so much for this information, it all seems a bit of a minefield. I do have bloods taken without thyroxine being taken, don't think doc has tested T3 or T4 but has done all what she calls relevant tests for other deficiencies. I hope I can find someone who is an expert in this area.

[SlowDragon Administrator in reply to Skippy10]

Suggest you get printed copies of your most recent blood test results and come back here with new post and members can advise on next steps

Frequently vitamin levels ether haven't al, been tested, or are within range, but right at bottom of range .

Vitamin levels need to be optimal

Eg B12 range is typically 210-780. GP would say levels are "fine" if result was 220 or 710. A thyroid patient frequently needs B12 at least above 500

ncbi.nlm.nih.gov/pubmed/186...

There is a high (approx 40%) prevalence of B12 deficiency in hypothyroid patients. Traditional symptoms are not a good guide to determining presence of B12 deficiency. Screening for vitamin B12 levels should be undertaken in all hypothyroid patients, irrespective of their thyroid antibody status. Replacement of B12 leads to improvement in symptoms

Vitamin D, similarly NHS use to recognise result being under 75nmol as being too low. But as that would require treating vast majority of UK population, NHS usually only says level is inadequate if under 50nmol. Thyroid patients need vitamin D optimal- at least around 80nmol and around 100nmol may be better

ncbi.nlm.nih.gov/pubmed/286...

Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.

endocrine-abstracts.org/ea/...

Evidence of a link between increased level of antithyroid antibodies in hypothyroid patients with HT and 25OHD3 deficiency may suggest that this group is particularly prone to the vitamin D deficiency and can benefit from its alignment.

[radd]

Skippy10,

It depends on what hormones you are deficient in.

If you are low in thyroxine, it would not help to increase HRT. If anything it risks making matters worse by elevating TBG further, so binding more thyroid hormone, making it unavailable for use.

If you post recent results complete with ranges (numbers in brackets) members will comment.

[Skippy10 in reply to radd]

Thanks

[magsyh]

More Hrt would mean you would have to up your thyroxine to combat the estrogen. I'm still on 50mcg and I think I need to up it a little more as my TSH has dropped back to 2.5. I found it to be a dodgy area when I was on 75-88 much because it's getting the balance right on a low dose as it suppressed your thyroid function and if your dose is too low adrenaline problems start. You feel more hypo than before. I cut my dose back to 50 until my body adjusted to the T4 and my reactive problems went away. I was hypo for so long I have to increase very slowly and I'm fine now.

[K80t]

Ensure you take your HRT and Levothyroxine several hours apart, as the HRT can interfere and reduce the potency of thyroxine. Sorry if you already know this , but I didn’t and my gp didn’t, so I ended up very unwell. I always tell woman this if they are on HRT and thyroxine.

[Skippy10 in reply to K80t]

Thanks, yes through this site I learned that early on. There appears to be little understanding of thyroid by my GP which makes me feel very wary about the guidance I am being given

[K80t in reply to Skippy10]

Yes it’s a minefield with GPs! I’ve had to educate mine. The best advice and information I have received has been from this forum and the Thyroid U.K. website. Stand your ground and question everything with your gp if it doesn’t sit right with you! I had years of mismanagement until I started advocating for myself . All the Best.