Blood Test - advice please

[Levo50]

Hello all

I come to you guys when I am desperate so here I am asking for your expert and welcomed advice (I so wish I didn't have to live with Hashi's) but hey ho...

I have been titrating my Levothyroxine for some months and I have just received my second medichecks private blood tests...

Has to be said I have been very VERY up and down, mood swings at one point, very low and depressed and wondering what life was all about as I couldn't see any positives just overwhelm and stress from every angle, my husband even said I have become so negative and lost my personality (to the point he wasn't sure he wanted to be with me)... I cried hard and developed a type of itchy body eczema.

My results February / July 2021

TR = Through Range

Levo Dose Feb 61.25 / July 87.5

TSH (0.27-4.2) Feb 3.1. / July 0.08

Free T4 (12-22) Feb 13.7 (17% TR) / July 17.3 (53% TR)

Free T3 (3.1-6.8) Feb 4.03 (25.14% TR) / July 4.7 (43% TR)

Vitamin D (50-175) Feb 51.6 / July 77. (Medicated 800-1600 per day)

Vitamin B12 (37.5-187.5) Feb 65.7 / July 71

Folate (3.89-19.45) Feb 9.86 / July 6.1

Ferritin (13-150) Feb 207 / July 175

Thyroglobulin Antibodies (<115) Feb 22.6 / July 56.1

Thyroid Peroxidase Antibodies (<34) Feb 91.9 / July 128

CRP HS (0-<5) Feb 0.78 / July 1.7

I feel better than I did in Feb, but when I have flare up's (if that's what they are especially when stressed and when I'm completely overwhelmed and stressed, and my brain doesn't work then that's awful - but when I calm down I'm functioning better (back at work big responsibilty and big expectation)- I enjoy my job, I just want to be. stable rather than all over the place!!

I have emailed my. endo's PA with my updated spreadsheet hopeful of a call tomorrow afternoon.

Any advice / suggestions very VERY much appreciated, I'm not sure if I am a poor converter and if so whether I should request NDT?

Also, libido is still zilch since god knows what year - my endo has suggested testosterone above HRT - any thoughts on this also welcomed.

Huge thank you so much in advance for any much needed advice.

[SeasideSusie Remembering]

Levo50

Looking at your latest results, you are undermedicated. The aim of a treated hypo patient on Levo only, generally, is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their ranges if that is where you feel well.

Your conversion looks pretty good. If you divide your FT4 by FT3 we get a ratio of T4 to T3 of 3.68, good conversion takes place when the ratio is less than 4:1.

With your FT4 only 53% through range the next step would be to increase your Levo to raise your FT4 level which will also raise your FT3.

Don't worry about your TSH being low, TSH is useful for diagnosis but once on thyroid hormone replacement it's the FT4 and, more importantly FT3, that are what should be used to see if we are optimally medicated.

If you suggest a dose increase to your endo and he isn't keen because of your TSH level, use the following information to show that he should be looking at FT4 and FT3:

From the British Thyroid Foundation:

btf-thyroid.org/thyroid-fun...

How can blood tests be used to manage thyroid disorders?

.....

Occasionally patients only feel well if the TSH is below normal or suppressed. This is usually not harmful as long as it is not completely undetectable and/or the FT3 is clearly normal.

There are also certain patients who only feel better if the TSH is just above the reference range. Within the limits described above, it is recommended that patients and their supervising doctors set individual targets that are right for their particular circumstances.

.....

Also, Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional publication for doctors):

"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).*"

*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3.

You can obtain a copy of this article from Dionne at ThyroidUK:

[e-mail]

print it and highlight Question 6 to show your endo.

[Evej13 in reply to SeasideSusie]

Hi SeasideSusie, You stated: "Your conversion looks pretty good. If you divide your FT4 by FT3 we get a ratio of T4 to T3 of 3.68, good conversion takes place when the ratio is less than 4:1."

Do you have a reference for that please?

Thanks,

Eve

[SeasideSusie Remembering in reply to Evej13]

No sorry. It's been mentioned many times over the years but I haven't saved the posts which refer to it.I remember that member Diogenes has mentioned it in replies, as has member pennyannie (I think) so you could look through their replies to see if you can find their references to it.

[Evej13 in reply to SeasideSusie]

Thanks SeasideSusie. The reason I ask is that I've only seen it done as a decimal rather than that type of ratio, eg. John E M Midgley, Rolf Larisch 1 , Johannes W Dietrich 1 , 1 , and Rudolf Hoermann's 2015 "Variation in the biochemical response to l-thyroxine therapy and relationship with peripheral thyroid hormone conversion efficiency" or Gullo et al's "Levothyroxine Monotherapy Cannot Guarantee Euthyroidism in All Athyreotic Patients".

[SeasideSusie Remembering in reply to Evej13]

Dr John E M Midgley is our member Diogenes, it will be somewhere within one of his replies on the forum, as I said that's where I saw it originally.

[Levo50 in reply to SeasideSusie]

SeasideSusie thank you so much this is amazing - my endo was on AL so I won't get to speak to him for a few weeks but I hugely appreciate this 😀

Not sure how I'll go about asking endo / GP to read the paper eek - suggestions welcome! x

[Levo50 in reply to SeasideSusie]

SeasideSusie

have the artcle

6 What is the correct dose of thyroxine and is there any rationale for adding in tri- iodothyronine?

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.

and surgery – are effective but none is perfect.

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).

Even while taking the slightly higher dose of levothyroxine a handful of patients continue to complain that a sense of wellbeing has not been restored. A trial of levothyroxine and tri- iodothyronine is not unreasonable. The dose of levothyroxine should be reduced by 50μg daily and tri iodothyronine in a dose of 10μg (half a tablet) daily added.

While taking both hormones it is important serum TSH is normal and not suppressed. If the patient is still dissatisfied it should be made clear that the symptoms have nothing to do with thyroid disease or its treatment and perhaps issues at home and in the workplace should be addressed.

There is no place for the use of animal thyroid extract in the treatment of hypothyroidism. Although preparations contain both thyroxine and tri-iodothyronine, the hormone content

5

[Levo50 in reply to Levo50]

SeasideSusie the parts underlined - may a trial of triiodothronine be worthwhile? My concern is the second point underlined - as my TSH may be suppressed? My endo has mentioned NDT but the third point says there is no place for this?

Many thanks for any further expert advice

[SlowDragon Administrator]

Previous post from 2 months ago….you were taking 100mcg?

Yet now you say 87.5mcg

How long have you been on 87.5mcg - minimum 6-8 weeks?

Was test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

suggest you are under medicated and 100mcg likely necessary

Meanwhile working on improving low vitamin levels as detailed by Seasidesusie

healthunlocked.com/thyroidu...

As you have Hashimoto’s are you on absolutely strictly gluten free diet

If not ……get coeliac blood test done before trialing cutting gluten out

[Levo50 in reply to SlowDragon]

SlowDragon thank you - yes that's correct my last bloods had my TSH drop from 3.0 to 0.1 at which my endo suggested I change/reduce from 100mcg per day to 75/100 alternate days, probably 4-5 weeks (the endo said 4weeks is optimal) I understand they are not always correct but there seems to be a lot of contradictions where advice is concerned which I find frustrating. Yes test was fasted in the morning. Vitamin Levels i.e. Vit D endo asked me to increase when my levels were. at 57, GP rang to say he can't prescribe as I am within range and following whatever guidance he was unable to prescribe, once I told him the endo would be sending a. report he prescribed, but I doubt the endo will see my vitamins as a problem as all are. in range.

I tried gluten free briefly at your suggestion some time ago, not for long as I found it added more stress to my life as gluten is in everything, the endo advised not to go gluten free at that stage. I am going to look into getting healthpan gut test at some point but this is expensive. I had a clear coeliac test.

[SlowDragon Administrator in reply to Levo50]

Vitamins, NHS only tests and treats deficiencies

Down to us to self supplement to bring to optimal levels

NHS will prescribe Vitamin D supplements if under 50nmol

A few CCG areas will prescribe if under 75nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

But improving to around 100nmol by self supplementing may be better

pubmed.ncbi.nlm.nih.gov/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly via NHS private testing service when supplementing

vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7

amazon.co.uk/BetterYou-Dlux...

It’s trial and error what dose we need, with hashimoto’s we frequently need higher dose than average

Calculator for working out dose you may need to bring level to 40ng/ml = 100nmol

grassrootshealth.net/projec...

Vitamin D and thyroid disease

grassrootshealth.net/blog/t...

Zero point paying for expensive gut test

Gluten issue is leaky gut when hypothyroid rather than an intolerance.

Only way to know if gluten free helps each individual person is to try it

[Levo50 in reply to SlowDragon]

Really helpful thank you SlowDragon - I did have the Vit D spray with K but the Doc took me off. it and prescribed tablet form saying it was better, so. much contraction isn't there, drives me mad!

[SlowDragon Administrator in reply to Levo50]

NHS won’t prescribe spray as it’s “too expensive “

Any vitamin D tablets you swallow must be minimum 4 hours away from levothyroxine

[Levo50 in reply to SlowDragon]

Thank you x

[Levo50]

Hidden Yes it is terrific 😀 thank you for your reply... Vit D, as mentioned in my comment to slow dragon above, GP was reluctant to increase, I have been taking intermittently (i.e. if I am outdoors in the sunshine I often miss my dose), I also forget also. I will look into bachs floral remedy thank you.

The Eczma certainly flares with stress, I don't understand Ferritin or why it is high or the connection but it comes and goes and I have some creams which nip it in the bud pretty swiftly. I may have to consider gluten free again but at the moment I want to get my thryroid meds stable first, as I mentioned to slow dragon I may look into getting a gut health test via healthpath.com

I eat a lot of spicy food and add plenty of turmeric, so hopefully that helps I may consider the. capsules you recommend to see if they help.

As you can no doubt sense I am. reluctant to go Gluten free, I don't enjoy it ans find it rather stressful but maybe if I learn I have leaky gut then maybe that will sway me, I don't eat much dairy naturally, i don't take milk in coffee and drink peppermint tea.

Off to find the Burp test - never heard of that before - thank you again for all your help and advice 😀

[SlowDragon Administrator in reply to Levo50]

Burp test healthygut.com/3-tests-for-...

Low stomach acid can be a common hypothyroid issue

Thousands of posts on here about low stomach acid

healthunlocked.com/search/p...

Web links re low stomach acid and reflux and hypothyroidism

nutritionjersey.com/high-or...

articles.mercola.com/sites/...

thyroidpharmacist.com/artic...

stopthethyroidmadness.com/s...

naturalendocrinesolutions.c...

meraki-nutrition.co.uk/indi...

huffingtonpost.co.uk/laura-...

lispine.com/blog/10-telling...

Protect your teeth if using ACV with mother

healthunlocked.com/thyroidu...

[Josephineinamachine]

Hi Levo50 just found this post as you directed me to it.

Like you my TSH was low/suppressed on 100 Levo. GP freaked and wouldn’t acknowledge T4 and T3 results so I got my referral to the private Endo.

He is good but still very TSH focused. He’s given me a trial of 15 mg Lio with a reduction of Levo to 75mg from 100.

I’m nearly 3 weeks into it. Still faffing with dosage and timings (probably shouldn’t faff but am getting desperate for an improvement!)

So far these are the things that have improved on 10mg only (still titrating and waiting for Levo to drop from my system so nothing stable yet):

no longer have sore dry nostrils. Leg and foot pain much improved - this is not consistent though.

Sleeping way better but brain fatigue remains (physical fatigue much reduced). I go to sleep quickly and my Fitbit tells me I have good deep sleep and REM. Resting heart rate has reduced from 70 to 62 which is good for me.

If you don’t have a Fitbit I strongly suggest getting one because it helps you make sense of your overall fitness and things like sleep quality.

My mood is a bit more ‘spiky’ but I see that as good as is normal me, rather than the ‘dulled’ person I had become. Feel a bit more assertive (and I need to be in my job). Can’t comment on libido as don’t have a partner anymore (ooh long story but pretty sure undiagnosed Hashis may have contributed)

Like you I have a big job and I need my brain to fire on every cylinder possible all the time. It hasn’t for a while so this contributes to stress and anxiety - and the desperation to get better quickly!

This is only a few weeks in though so I’m prepared for symptoms to come back or change in the next few weeks because it’s like a rollercoaster.

Everyone is different but maybe you’d benefit from a T3 trial - by the way my last results show I’m a ‘good converter’ but my body was clearly not agreeing!

X

[Levo50 in reply to Josephineinamachine]

Found my previous posts 😂 thank you so much for taking the time to reply and for caring!

Isn’t it a journey - we have similarities and it’s nice to chat to someone who understands, my mood is low and I’m not wanting to socialise and I’m sure my husband is totally fed up with me but it’s hard they done understand!

So I hope you get stable soon, well done getting the Lio - is this on prescription?

My results say I’m a good converter - this was explained by SeasideSusie very well on my other post! The Pulse article as recommended I’ve sent to my Endo and GP as without which I am sure my Endo would go by TSH dropped again and drop my Levo ... I really didn’t know the answer as my FT4 & 3 through ranges have improved but at the expense of TSH being very low! My mood isn’t good though so I’m nervous of any change!

To think I sat happily on 50mcg for decades as I was ‘normal’ until I dropped upon this site!

At least you found this support fairly early, let’s hope we get stable and can have some quality of life back!

I’ve followed you and will follow your journey, wishing you all the best xx