Advice please

[Fernsmum]

For the last 6 months I have been feeling unwell , I do take meds for thyroid , arthritis, and bp, but 6 months ago my bp shot up and despite all efforts by the GPS Med team and many tweaks with my meds I'm not feeling myself , the gp thought it might be my adrenal glands , blood test said no , then he said maybe my thyroid ,and that he would consult with Endocrinology and then get back to me , that was about a month ago , I have been patient but now feel enough is enough so plan to try to get an appointment , gold dust I know , but I wondered if any of you bright sparks had any suggestions , as to my next step. Thank you for reading this .x

[SlowDragon Administrator]

welcome to the forum

Do you have copies of any recent thyroid and vitamin test results

How much levothyroxine are you taking

Do you always get same brand at each prescription

Are you aware to take levothyroxine on empty stomach and no other medications within 2 hours

Some meds and supplements at least 4 hours away

IBS suggests low stomach acid/inadequate dose Levo / poor vitamin levels

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Essential to test vitamin D, folate, ferritin and B12

Lower vitamin levels more common as we get older

For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels

What vitamin supplements are you taking

Also VERY important to test TSH, Ft4 and Ft3 together

What is reason for your hypothyroidism

Autoimmune?

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Add any results that you have

But likely to need full testing

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

[AKatieD]

I would echo what Slow Dragon said about testing/ how to test thyroid and vitamins and getting actual results of earlier g.p. tests rather than just accepting everything is fine.

G.P.s tends to think results are fine, when they are anywhere in range but they might meed to be much better to make you feel well.

I would add that if your adrenals are possibly causing troubles, a blood test is not the best predictor but is probably all your g.p.can offer.

If your g.p. did only a blood test you need a saliva test too, as the former measures total cortisol levels and the latter the free cortisol that is usable by your body ( in the same way we test free thyroid hormone levels not total). Therefore, the 4 x in one day saliva test will give a better idea of any cortisol problems.

[JGBH in reply to AKatieD]

Thank you.. That’s most helpful to know.

[serenfach]

Type your bp med name into Goodle with "blood sugar". Many bp meds raise blood sugar until it is in diabetic range and can cause Type 2 diabetes. Did your GP do a blood sugar test? Just a thought and worth looking at.

[Judithdalston]

I had chronic hypothyroidism, diabetes and fibromyalgia which had been reasonably treated for decade(s) until I got covid 4 1/2 + years ago which sent my BP up, then HR, which doesn’t really respond to hypertensive drugs ( 5 of them) but no other scans/ tests show anything amiss, it’s just a Long Covid symptom. Could you have LC?

[Fernsmum in reply to Judithdalston]

Hi thanks for your reply , no I really don't think it's LC, my problem began in earnest about 6 months ago my bp soared ,(it has been well controlled for years till then ), I do have other health problems too , but what's so annoying I do all I'm ask by the Dr but nothing seems to change , and a face to face appointment seems impossible to get , and now our surgery have introduced Econsults first , and then they decide if you warrant an appointment it's so frustrating , sorry to go on but I really feel ,left out in the cold , I intend tomorrow todo an econsult and hope for the best .

[Judithdalston in reply to Fernsmum]

I can sympathise with your frustration trying to get to see your Dr.1:1… takes 3-6 weeks to even speak to ours on the phone ( a small surgery with 2 permanent GPs and 1-2 locums), then they decide if worth seeing you in person! I had a private Zoom endocrinologist which was just about ok in Lockdown, but then he started to abuse the appointments being a combination of being 10 mins late, wondering off to answer the door to an expected parcel delivery for 10 mins, switching off the camera etc and charging the full whack! When one has multiple chronic issues ( for me diabetes, hypothyroidism, and fibromyalgia dating to many years before Long Covid )I get the feeling it’s a sort of medical ‘Top Trumps’ and some diseases take priority over others regardless of how the patient actually feels or knows their own body. Good luck.