Everything low except my weight!

[Feelingrubbish]

I am preparing for my next endo appt in about a month so I thought I would privately test my TSH, T4 and T3 to see where I'm at. I tested at 9am and stopped my B complex a week before.

TSH 0.3 (0.27-4.2) 0.76%

T4 15.3 (12-22) 33%

T3 4.1 (3.1-6.8) 27.03%

I've been taking 100mcg Levo for about 18 months.

Previously my endo has been unhappy with my low (she says 'suppressed') TSH and wanted to reduce my levo dose but advice here helped me persuade her to keep me at 100mcg. Last endo appt was May.

Since then I have been okay (feeling fitter, less aches and pains) but some symptoms have been returning (low mood, fatigue, low energy, weight gain). In fact, I am the heaviest I have ever been which probably has added to my my low mood!

At end of April my private results were:

TSH 0.5 (0.27-4.2) 3.27%

T4 15.1 (12-22) 31%

T3 4.5 (3.1-6.8) 58.33%

and my NHS results in May were:

TSH 0.2 (0.35-4.94) -1.09%

T4 13.2 (9-19.1) 41.58%

T3 not tested

I know when I see my endo next month that she will be happy and not want to change anything if my TSH is in range, but I'm not happy how low my T4 and T3 are and feel that this has allowed my weight to creep up. They used to be much higher. 2 years ago when I increased from 50mcg to 75mcg, I felt pretty good and my T4 and T3 were in the upper quartile. My TSH was very suppressed then.

I take lots of different supplements spaced out over the day: B complex, iron & vit C (alternate days), vit D spray, magnesium.

I also take Minoxidil as prescribed by my dermatologist for hair loss. After many years of trying to see if optimising my thyroid would help, I have actually been diagnosed with Female Pattern Hair Loss (hereditary).

Any advice gratefully received on how to keep my TSH in range but increase my T4 and T3.

[helvella]

If your TSH isn't rising with FT4 and FT3 at a third or less through the range, I don't think it is at all appropriate to expect to be able to make it rise by reducing dose.

For some reason, your. pituitary is simply not upping its output.

They should do a series of tests on several of the hormones produced by the pituitary to see if it is functioning for other hormones.

And, if still suspicious, probably an MRI.

[Feelingrubbish in reply to helvella]

Thank you Helvella

What tests should I be suggesting to my endo? Previously she said my pituitary was fine. Do you think she will spot this issue or will I need to highlight it to her?

I've tried to keep up my knowledge about my condition (Hashimotos) and I know it means my thyroid is gradually getting damaged but I do find it all confusing.

[helvella in reply to Feelingrubbish]

Wiki lists the other hormones produced by the anterior pituitary:

Anterior

The anterior pituitary synthesizes and secretes hormones. All releasing hormones (-RH) referred to can also be referred to as releasing factors (-RF).

Somatotropes:

Growth hormone (GH), also known as somatotropin, is released under the influence of hypothalamic growth hormone-releasing hormone (GHRH), and is inhibited by hypothalamic somatostatin.

Corticotropes:

Cleaved from the precursor proopiomelanocortin protein, and include adrenocorticotropic hormone (ACTH), and beta-endorphin, and melanocyte-stimulating hormone are released.[10]

Thyrotropes:

Thyroid-stimulating hormone (TSH) is released under the influence of hypothalamic thyrotropin-releasing hormone (TRH) and is inhibited by somatostatin.

Gonadotropes:

Luteinizing hormone (LH).

Follicle-stimulating hormone (FSH), both released under influence of Gonadotropin-releasing Hormone (GnRH)

Lactotropes:

Prolactin (PRL), whose release is inconsistently stimulated by hypothalamic TRH, oxytocin, vasopressin, vasoactive intestinal peptide, angiotensin II, neuropeptide Y, galanin, substance P, bombesin-like peptides (gastrin-releasing peptide, neuromedin B and C), and neurotensin, and inhibited by hypothalamic dopamine.

en.wikipedia.org/wiki/Pitui...

Which ones to test depends on several things - likely including cost!

It is always confusing. You just think you have got it sorted when you realise that there is another layer to understand...

[Feelingrubbish in reply to helvella]

Oh wow! Thank you... yes, definitely confusing! Hopefully my endo will be prepared to complete some of these tests. I can't afford lots of private tests.

[helvella in reply to Feelingrubbish]

Well, LH, FSH and PRL are quite common tests.

[SlowDragon Administrator in reply to Feelingrubbish]

Previously she said my pituitary was fine. Do you think she will spot this issue or will I need to highlight it to her?

Have you had MRI of pituitary

Or (very expensive) pituitary function blood test

With Hashimoto’s TSH is often sluggish/unresponsive

TSH 0.3 (0.27-4.2) 0.76%

T4 15.3 (12-22) 33%

T3 4.1 (3.1-6.8) 27.03%

You need to request dose INCREASE in Levo

Many thyroid patients need Ft4 at least 60-70% through range

Other indicators of being on inadequate dose

Obviously…..symptoms

Also

high cholesterol

Poor kidney function

Have you had cortisol levels tested

Had coeliac blood test

Are you on gluten free/dairy free diet?

Roughly how much do you weigh in kilo

[tattybogle]

This may be useful , to help persuade them to them to not worry about low TSH unless it's below 0.04 : healthunlocked.com/thyroidu... useful-evidence-that-tsh-between-0.04-0.4-has-no-increased-risk-to-patients-on-levothyroxine-updated-new-study-does-show-small-risk

[Feelingrubbish]

Thank you SD

- high cholesterol (Yes, I've been tested and am slightly high. Doctor has wanted to put me on statins but I have avoided this so far. I've tried change to diet/life style. Tried drinking those 'lower cholesterol' yoghurt drinks but no difference to results)

- Poor kidney function (I think I've had this tested in the past but nothing bad has been highlighted)

- Have you had cortisol levels tested (No, never tested)

- Had coeliac blood test (Yes, was negative)

- Are you on gluten free/dairy free diet? (No, and I know you have suggested this in the past but I have resisted to this change due to the difficulty/effort needed to separate my diet from the rest of the family. Is this really likely to increase my T4 and T3? I don't really have any digestive disorders when eating gluten or dairy)

- Roughly how much do you weigh in kilo (I hate getting on the scales as it makes me so sad, but I currently weigh about 82kg (I used to be about 75kg or much less in my younger days)

[Tina_Maria in reply to Feelingrubbish]

Cholesterol levels are closely linked to your thyroid hormones. If your metabolism is slowed down, such as it is in hypothyroidism, your cholesterol (and glucose) levels will rise, as your body (mainly the liver) has difficulties processing these substances. As a result levels will rise. If you increase thyroid hormones, the levels will go down, as your body will have enough energy to deal with them. And this is why weight can creep up in hypothyroidism, as you cannot process lipids effectively, hence they get put away as storage. This has nothing to do with your diet, it is a metabolic problem and should be addressed as such, but most GPs are not interested and do not know.

GPs always go into panic mode, when the TSH goes below the reference range and this is usually the reason why they lower your medication, instead of looking at the T4 and T3, which will mostly be in range. So they lower your meds, which makes you more hypothyroid and exacerbates the weight and cholesterol problem. And oh yes, they offer statins for the cholesterol... 🤦‍♀️

The NICE guidance actually state, that you should give levothyroxine replacement therapy at 1.6 mcg per kg, rounded to the nearest 25mcg. I weigh 58 kg and I am on 100 mcg levothyroxine! If you weigh 82kg, which is a result of your under-medication and not diet!), you should be given 82 x 1.6 = 131.2 kg, rounded to the nearest 25mcg, so you should be on 125mcg levothyroxine at least. And your poor T3 and T4 values show that you need an increase and definitely not a decrease.

NICE guidance here:

cks.nice.org.uk/topics/hypo...

[Feelingrubbish in reply to Tina_Maria]

Thank you Tina_Maria

My cholesterol has been raised for many years (probably even before I was diagnosed with Hashimotos) - nothing I do seems to change it. It would be great if doctors didn't look at me thinking it was my fault. The last doctor's appointment about it was left as 'let's see after a few months of you changing your diet and upping your exercise' but even after that, no change.

And then there's my endo worried about my low TSH and reluctantly letting me stay on 100mcg. I will be prepared to ask for an increase linked to my weight (I must remember to quote 1.6mcg per kg) and hopefully she will agree.

[Tina_Maria in reply to Feelingrubbish]

Hypothyroidism can come on very slowly over years and it is quite possible that your thyroid was struggling long before you were diagnosed, hence the raised cholesterol before your diagnosis.

Hopefully once your thyroid hormones are optimised, this will sort itself out.

[SlowDragon Administrator in reply to Feelingrubbish]

You might find info on my profile helpful

I had zero gut issues and negative Coeliac test

Turned out I was extremely gluten intolerant. (like 80% with hashimoto’s)

And dairy free has resulted in significant weight loss

High cholesterol is directly linked to being on too low a dose thyroid hormones and it will improve/reduce when dose is correct

Ignore TSH and get Ft4 and FT3 at optimal levels

[Feelingrubbish in reply to SlowDragon]

Thank you SD - your journey is an interesting read and great to see your successes over the years.

I have one swollen ankle (my right one) at the end of the day which is back to normal in the morning. I haven't worked out what that's all about. I've not considered dairy-free before. I have kefir yoghurt and muesli most mornings which I find really helps my digestion. I assume that's dairy and definitely gluten.

I am definitely going to ask for an increase of levo at my next appointment based on the NICE guidelines but I know my endo will be scared about lowering my TSH. I sometimes feel I'm between a rock and a hard place!

Thanks for your support

[SlowDragon Administrator in reply to Feelingrubbish]

I've not considered dairy-free before. I have kefir yoghurt and muesli most mornings which I find really helps my digestion. I assume that's dairy and definitely gluten.

I make my own muesli using certified gluten free oats…….served with oat milk. (I like “Plenish” oat milk best…..gluten free and only oats and water….nothing else

[SlowDragon Administrator]

Guidelines on dose by weight is 1.6mcg per kilo of your weight per day

82kg x 1.6mcg = 130mcg approx per day

75mcg x 1.6mcg = 120mcg approx per day

cks.nice.org.uk/topics/hypo...

bnf.nice.org.uk/drugs/levot...

nhs.uk/medicines/levothyrox...

Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.

Some people need a bit less than guidelines, some a bit more

Comprehensive list of references for needing LOW TSH on levothyroxine

healthunlocked.com/thyroidu....

sciencedirect.com/science/a...

The optimal daily dose in overt hypothyroidism is 1·5–1·8 μg per kg of bodyweight, rounded to the nearest 25 μg.