What should I do next ?: I'd be grateful for... - Thyroid UK

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What should I do next ?

Chr6 profile image
Chr6
23 Replies

I'd be grateful for advice on my latest blood test results and recent health history about what I should be doing next.

I have hypothyroidism with Hashimoto and the last year has been quite up-and-down. I am now taking 50 mcg/day of Levo (Accord). My health history and blood test results are in my profile as this post would otherwise be too long.

My main concerns/questions now are:

- ferritin levels tend to be low. I have increased red meat intake and eat lost of green veg but they are not budging. GP is not willing to supplement. I had iron panel test in July 2020 but I don't know what the results mean. Should I be supplementing ?

- I don't know how to interpret the FT4 results I got in April and Jan 2021. In April, FT4 = 13 in a [7.70 - 15.10] range suggests I am close to the top. But in Jan, FT4 = 14.4 in a [12-22] range suggests I am close to the bottom of the range. Which is it?

- My FT3 seems to be going down (slowly) even though I have been increasing my Levothyroxine intake (slowly). Is this normal ? Should I increase Levothyroxine ?

- My HDL cholesterol is above range, always has been. My GP is very concerned about this, not sure why. I always thought HDL was good cholesterol, and the bad/good cholesterol ratio seems fine. Is this related to hypothyroidism ?

- Conversely, my fasting glucose is going up and is now only just below the top of the range. My GP has not mentioned it. I used to have insulin resistance from PCOS (took Metformin to control it) so I am at high risk of developing diabetes. Is this linked to hypothyroidism?

Thanks for reading my questions and for any info/advice you can bring.

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Chr6
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23 Replies
fuchsia-pink profile image
fuchsia-pink

In your profile you say you have an endo referral and your latest thyroid bloods are as follows:

TSH = 5.45 mu/L [0.34 - 5.6]

FT4 = 9.9 pmol/L [7.70 - 15.1]

FT3 = 4.8 pmol/L [4.30 - 6.80]

Also Vit D = 77 nmol/L

These show you are very under-medicated. 50 mcg of levo is usually a "starter" dose - unless very elderly or frail - so you should be asking the GP for an additional 25 mcg a day while you wait for the endo referral (which can take months).

You are looking for TSH to be less than 2 (probably less than 1) and both "frees" to be nice and high. Consistently.

I understand that the blood results in April were a lot better - but you have Hashi's, so these could have been on a Hashi's high (taking you - oooh look - to normal rather than waaay over range!). The latest bloods, post any flare, show you need more meds. I bet you feel really rough with levels this poor.

What are you doing to boost vit D?

Chr6 profile image
Chr6 in reply tofuchsia-pink

Hi fuchsia-pink, thanks for taking time to look into this.

On the UK endo side, I am not sure I am waiting for a referral: GP#3 had no interest in my case and only promised a referral when my husband threatened to sue him for medical negligence. GP#3 sent me an email a few months later that suggested an Endo had looked at my results and had decided there was nothing wrong. But I never got a referral letter and never spoke to anyone. I wouldn't be surprised if GP#3 didn't bother asking for a referral and is telling me porkies to get me off his back. There is no trace of a referral in my online records, and I don't really know how to find out without antagonising my new GP or the surgery. You wouldn't believe how much grief I had just getting the new GP to agree to 50 mcg/day. She knows nothing about thyroid either but has the grace to admit it and listen. But I think the heart anomalies frighten her (as they do me!).

On the blood result in April, yes, it looked better for TSH but bloods were taken late morning ~ 11:30 as I could not get my preferred early morning appointment (as recommended on this site). So, TSH was probably reading artificially low in April, which is unfortunate when you try to argue for higher dose.

On Vit D, I am not doing anything much, eating healthy, occasionally adding D3 drops to my breakfast, but nothing systematic. I thought my values ~ 77 nmol/L were OK (deficiency is < 25, I believe) but could not find anything conclusive about what is nominal for Hashi sufferers.

Thanks again for your help. Take care.

SlowDragon profile image
SlowDragonAdministrator

Obviously you need to get FULL thyroid and vitamin testing

Vitamins are low BECAUSE you are under medicated

50mcg is only a starter dose of levothyroxine

Levothyroxine doesn’t top up failing thyroid, it replaces it

Testing TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12 at least annually

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

You say ..

I used to have insulin resistance from PCOS (took Metformin to control it) so I am at high risk of developing diabetes.

PCOS and Hashimoto’s often linked. Metaformin lowers B12

Ask GP to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

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

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

Is this how you do your tests?

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

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s.

Gluten intolerance is often a hidden issue

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/if-you-are-un...

Email Thyroid UK for list of recommend thyroid specialist endocrinologists...NHS and Private

tukadmin@thyroiduk.org

The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is ALWAYS under 2

When adequately treated, TSH will often be well below one.

Most important results are ALWAYS Ft3 followed by Ft4. When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)

Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works

SlowDragon profile image
SlowDragonAdministrator

PCOS and Hashimoto’s

pcosdiva.com/?s=Hashimoto’s+

verywellhealth.com/things-w...

Metaformin and vitamin deficiencies

independentnurse.co.uk/clin...

Chr6 profile image
Chr6 in reply toSlowDragon

Thank you SlowDragon, I appreciate you getting back to me. I am learning so much from you and other members on this site, still lots to learn of course. Thank you for keeping us all going.

Indeed, as you recommend, I usually do blood tests first thing in the morning. The only exception was April 2021 (new Covid rules for blood tests).

I no longer take Metformin, I stopped in 2017 after I had my second ovary removed (first one went in 2013). I will update my profile to provide earlier history as well at some point.

FT3 is clearly a long way from where it should be. I am worried that it has been steadily decreasing as my Levothyroxine intake increased. As if Levo FT4 stops the thyroid from having to work so hard, but the Levo FT4 does not convert to FT3, possibly because ferritin (and Vit D?) are too low (the other Vits look ok, no?)

Thanks for your help. All the best.

shaws profile image
shawsAdministrator

Your dose seems low as you were diagnosed one year ago!

Your doctor shouldn't be so concerned about you having a higher cholesterol level. This is due to being hypothyroid and if you get onto an optimum dose of thyroid hormones that suit you, cholesterol level should reduce.

Don't take medication to reduce cholesterol as it will do so when you're on a sufficient dose of thyroid hormone replacement. I must also state I'm not medically qualified.

healthline.com/health/thyro...

healthline.com/health/thyro...

Chr6 profile image
Chr6 in reply toshaws

Thanks a lot Shaws, that's really helpful. I have indeed been offered anti-depressants and statins already, and turned down both, which did not endear me to the GPs in question (I also turned down HRT so I am obviously beyond help). I really don't understand why GP are so unable/unwilling to tackle the thyroid problems instead. Thanks again for your time and advice.

shaws profile image
shawsAdministrator in reply toChr6

I think the reason is that it would seem that we, the patient, are treated as if we have no brains and the professionals don't like to be asked questions as they may not be able to respond.

GPs seem to believe that anti-depressants are fine, without checking the patients Free T4 and Free T3 results. If T3 is low in hypo patients then I think they could reduce some levo and add T3 and see how patient's problem is eased. Also keep in mind that I'm not medically qualified.

Chr6 profile image
Chr6 in reply toshaws

I can accept that GPs cannot be specialists in everything. What I don’t stomach is GPs who won’t admit they don’t know and use their medical authority to placate or deflect questions. Surely they should welcome proactive patients who want to improve their own health and reduce the chance of greater complications in later life !?! Thanks for your message, comforting to know others fight similar battles. Take care.

klr31 profile image
klr31

I would take an iron supplement with C as I did when my ferritin was low. Karen

Chr6 profile image
Chr6 in reply toklr31

Hi klr31, ok, thanks for that. Can you remember what you took, and how long did it take to improve ? I'd still like to know what all those iron-related tests actually mean, to out my mind at rest. Thanks for taking time to respond, appreciate it.

in reply toChr6

rt3-adrenals.org/Iron_test_...

This site can help you understand your iron results. :)

Chr6 profile image
Chr6 in reply to

Thank you plant_lady, that’s a great web site which I had not come across before. The iron indicators all point at supplementing, so that’s going to be my next step. Why my GP should think these results are acceptable is totally beyond me. Thanks again, take care.

klr31 profile image
klr31 in reply toChr6

Thyroid sufferers are often low in ferritin, folate, B12 and D and, as I understand it, these are needed for proper absorption of thyroxine. My doctor (like so many) was not proactive about any of my abnormal test results so I had to look into (eventually) what I needed. It took time to learn and understand. I took an Iron with C from H&B as only a low dose but good as it didn't upset me. I don't take it as much now but still take a multivitamin with iron occasionally. My thyroid issue was that I was kept on too low a dose of thyroxine for too long and it took a visit to a private endocrinologist to rectify that. I lost a good few years.

Good luck.

Karen

klr31 profile image
klr31 in reply toChr6

PS you look like you need to increase your thyroxine too.

Chr6 profile image
Chr6 in reply toklr31

Thanks klr31, I know we are all different but what you describe sounds remarkably familiar. I think my thyroid had been playing up for years before this flared up in 2019. Fobbed off for too long being told all tests were ‘normal’, being blamed for lifestyle, years of guilt about excessive weight, instead of investigating these (now) obvious underlying medical issues. I will increase Levo & try iron+C, see how it goes. Thanks again, take care.

klr31 profile image
klr31 in reply toChr6

So many people seem to have the same problem with under medication and not getting the advice they need.Karen

klr31 profile image
klr31 in reply toChr6

Always best to get your actual results and check yourself. Karen

bookish profile image
bookish

Hi, regarding your last point about blood sugar, have a look at replies on healthunlocked.com/thyroidu...? Cheers

Chr6 profile image
Chr6 in reply tobookish

Thanks bookish, that's interesting. My most recent HbA1c levels were (April'21) 39 mmol/mol, (June 2020) 37 and (Sept 2019) 35. So, yet another indicator that's currently borderline OK but slowly going awry (normal is < 41 mol/mol). I always wondered whether it was wise to stop Metformin after my ovaries were removed. Amazingly, even the surgeon had no idea whether PCOS insulin resistance would get better after the ovaries had gone.

bookish profile image
bookish in reply toChr6

My pleasure. My HbA1c was 39 too, in 2017, but had dropped to 32 by mid 2018 (I'd gone gluten free mid 2017 and by 2018 had lost a lot (too much) weight - there is never only one thing going on is there!). I read later that some 'functional' practitioners consider 39 the bottom of the pre-diabetic range. As with many things there seems to be a 'sweet spot' for HbA1c - neither too high nor too low for optimal overall health. Due to diet restrictions (other) I've been eating lots of veg and quite a lot of fruit and have put back more weight than expected. As blood sugar seems to be implicated in just about everything I thought I'd get a monitor and it is proving very helpful, so I'll be fine tuning the carbs. The liver can be in trouble long before you get symptoms and you can give that a hand and benefit healthwise before you see any weight loss (so that is not the thing to be aiming for).

You may find Micki Rose's site helpful - I quote her (with apologies!): "I have PCOS (Polycystic Ovary Syndrome) which is renowned for buggering up your blood sugar" purehealthclinic.co.uk/2020...

My monitor was only c £28 with extras, so if you can, treat yourself. Best of luck

tattybogle profile image
tattybogle

perhaps your GP would be interested in reading this from GPOnline (2010). It discusses cholesterol and heart issues in relation to thyroid treatment,. written by NHS specialist registrars in cardiology and endocrinology.

healthunlocked.com/thyroidu....

Chr6 profile image
Chr6 in reply totattybogle

Thanks tattybogle, very good, I’ll certainly make sure my GP and surgery get a copy before my next consultation. Time to educate our GPs.. 😀

Thanks everyone for the fantastic response, I feel better just reading you all. Look after yourselves. Much love to you all 💕

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