Thyroid and HBP: I have taken levothyroxine for... - Thyroid UK

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Thyroid and HBP

15 Replies

I have taken levothyroxine for 40 years (thyroidectomy) and for the last 20 years have been continually arguing with my GP about HBP, average 150/105. Over this time I have been prescribed several types of BP reducing tablets and all have had no effect whatsoever. Late last year I was diagnosed with excess aldosterone and have been on a number of different diuretics again without success. All the tablets for HBP and the diuretics have caused great discomfort notably with digestion, numbness and tingling particularly hands and feet. Has anyone had similar experience and found something that works. My GP and Consultant are stumped and only offer further tablets none with evidence suggesting a successful outcome and I have had enough of playing the guinea pig. All info welcome

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15 Replies
Nanaedake profile image
Nanaedake

What were your last thyroid blood test results? Perhaps you are not on the correct dose or have low vitamin levels which is common with thyroid disease. Have you got results from blood tests for vitD, B12, folate and ferritin? Vit D is particularly crucial as you have no thyroid. Also Che k if calcium levels are monitored and parathyroid hormone.

in reply to Nanaedake

Nanaedake

Thanks for your response, I can't accurately respond to any of your questions as I had no idea there were so many issues. My GP has always said my annual thyroid blood test results have be fine. I'll need to go back and ask some more questions

Thanks again

Nanaedake profile image
Nanaedake in reply to

You can get a print out of blood test results via your GP reception if in the UK. You should be able to get online access although some surgeries still do not provide it. This would give you some help to be able to discuss with GP and ask them to explain anything you need to know. You are legally entitled to a copy of blood tests if in the UK. Ensure they include the lab ranges.

SlowDragon profile image
SlowDragonAdministrator

Can you add most recent blood test results and ranges

Just testing TSH and FT4 is completely inadequate

For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

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

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

please email Dionne at

tukadmin@thyroiduk.org

Professor Toft recent article saying, T3 may be necessary for many otherwise we need high FT4 and suppressed TSH in order to have high enough FT3

rcpe.ac.uk/sites/default/fi...

Research shows 20% Patients with no thyroid can not regain full health on just Levothyroxine but need addition of small dose of T3

ncbi.nlm.nih.gov/pmc/articl...

in reply to SlowDragon

Hi Slowdragon

Thanks for your response.

Please excuse my ignorance of this subject, my GP has always reported my results as OK. I don't have any info on the specifics you mention and will have to chase up with my GP.

Do you know of any relationship between thyroid issues and high blood pressure ?, my GP says there are none that he knows of but I have found some articles that suggest there is a connection?

Thanks again for taking the time to respond

SlowDragon profile image
SlowDragonAdministrator in reply to

There are over 100,000 members on here. Predominantly from UK

There are almost 2 million people in the UK on Levothyroxine

Unfortunately a significant number of people are left on inadequate dose of Levothyroxine and only TSH or TSH and FT4 tested

First step is to get hold of your most recent blood test results and ranges

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 receptionist if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

To get access online you need to fill in form and take ID to GP surgery

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.

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also 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. 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 thyroid tests?

How much Levothyroxine are you currently taking?

Has dose been reduced or brand of Levothyroxin changed recently?

Pins and needles in hands and feet is common symptom of low B12.

b12deficiency.info/signs-an...

Low B12 is extremely common when hypothyroid

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,

SlowDragon profile image
SlowDragonAdministrator in reply to

patients after total thyroidectomy on Levothyroxine may have lower FT3 than average population

eje.bioscientifica.com/view...

TSH is not an adequate test on its own

Important to always test FT3 and FT4

If under treated and therefore FT3 low and still hypothyroid this might cause high BP

ncbi.nlm.nih.gov/pmc/articl...

High cholesterol is linked to being under treated too.....if you have had cholesterol tested

nhs.uk/conditions/statins/c...

If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.

in reply to SlowDragon

Thanks SlowerDragon

Letter drafted to Doc including all the test info from your post. Hopefully results and scope of tests will follow

SlowDragon profile image
SlowDragonAdministrator in reply to

Much better to NOT involve GP.

Just ask receptionist for copies of your blood test results

in reply to SlowDragon

Thanks for advice. I now have copies of recent tests. Unfortunately I haven't been able to upload here perhaps you can give me a tip to help

Thanks again

Sunny

SlowDragon profile image
SlowDragonAdministrator in reply to

Suggest you start a new post as more people will see it

You can only add one image per post. Make sure it doesn't have your ID details showing

Alternatively type up results in new post

We need results and ranges for

TSH

FT4

FT3

TPO and TG thyroid antibodies

Folate

Ferritin

B12

Vitamin D

GP very unlikely to have tested them all

in reply to SlowDragon

Thanks again I'll start a new post with info typed up

Best regards

Sunny

Greekchick profile image
Greekchick

Dear Sunny,

It sounds like your root problem is your hyperaldosteronism, of which high blood pressure is a symptom. Here is a link that provides a description of the condition, etc, which may help you. The numbness and tingling you feel is a classic symptom of this disease. Your docs need to treat the underlying cause, not just the symptom. Apparently, your HBP will remain high without treating the aldosterone problem. Here’s the link for you:

mayoclinic.org/diseases-con...

There are drugs to treat this, like spironolactone, eplerenone, and amiloride, but first they need to figure out what is causing it in the first place. There are other reasons for the cause that should be ruled out first before any other drugs are given to you. I hope this is helpful and wishing you the best of luck.

in reply to Greekchick

Hi and thanks for taking the time to respond and sending the link. I believe I have non responsive hypertension as I have had the drug treatments described with no change to BP from any.

Thanks again

Greekchick profile image
Greekchick in reply to

Well I’m glad that’s been ruled out for you - that is one less thing to think about. Hope you feel better soon. When my friend had her levo increased her BP increased significantly, and then went back down when it was lowered. I don’t think MDs really know how this all works - and being a guinea pig is no fun. 🙁

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