What's my next step?: Hello! I was previously a... - Thyroid UK

Thyroid UK

137,806 members161,633 posts

What's my next step?

12 Replies

Hello!

I was previously a member here before I flounced off!

I was diagnosed in June last year and I'm now, finally, on 125mcg of levo. My most result results are attached.

I am taking 4000iu Vit D, magnesium and K2, thorne B vitamins, selenium and spatone. (B Vits stopped a week before bloods.)

I'd be keen to hear opinions on my FT4/FT3 ratio.

Thank you.

Read more about...
12 Replies
SeasideSusie profile image
SeasideSusieRemembering

plant_lady

I don't know what caused you to flouce off before, but please remember that members who respond are only trying to help :)

I'd be keen to hear opinions on my FT4/FT3 ratio.

It could be better. The aim of a treated Hypo patient on Levo only, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their reference ranges, if that is where you feel well. So you might benefit from a higher FT3 level.

For some results we don't need % through range, it just doesn't work for some results. I'll mention below which of your tests you don't need a percentage through range for.

Optimal nutrient levels help with conversion of T4 to T3, in particular Ferritin and your ferritin level is dire at 18 (13-150). I doubt whether Spatone is enough to help raise your level.

For an iron panel, optimal levels according to rt3-adrenals.org/Iron_test_... are:

Serum iron: 55 to 70% of the range, higher end for men - yours is 16% so far too low.

Saturation: optimal is 35 to 45%, higher end for men - this is already a percentage and your test shows a range of 20-50% and your result is 22% so it's a long way off the optimal percentage.

Total Iron Binding Capacity (TIBC): Low in range indicates lack of capacity for additional iron, High in range indicates body's need for supplemental iron - yours is 50% through range so couldn't really be any better. This test tells how much transferrin (a protein) is free to carry iron through your blood. If your TIBC level is high, it means more transferrin is free because you have low iron.

Unsaturated iron-binding capacity (UIBC): I don't have any useful information about this but believe the other tests are more useful.

Ferritin: Low level virtually always indicates need for iron supplementation - yours is extremely low at just 3.65% through range.

With your low serum iron, low saturation % and low ferritin, I would think you may be looking at iron deficiency and should be discussing this with your GP with a view to having iron tablets prescribed with regular monitoring. With an optimal iron panel you may find your conversion of T4 to T3 improves.

Vit D: 131 and I assume the unit of measurement is nmol/L

You don't need a percentage through range with Vit D. There are categories - deficient, insufficient, sufficient/adequate, etc. Each category has a range.

The Vit D Society and Grassroots Health recommend a level of 100-150nmol/L so this would be your aim and you sit very nicely just over half way through this recommendation and you just need a maintenance dose to keep it there or up to 150nmol/L. You'll need to find your maintenance dose by trial and error, maybe 4,000iu is your maintenance dose, or maybe 2,000iu or maybe more or less, maybe more in winter than summer. Retest twice a year to check levels and adjust dose if necessary.

Active B12: 92 (37.5-188)

Again, you don't need percentage through range. Active B12 below 70 suggests testing for B12 deficiency. A good level would be 100+

Folate is fine, it's recommended to be at least half way through range.

Total Thyroxine is not a useful test, it's the FT4 that tells us what we need to know about T4.

Raised antibodies confirm autoimmune thyroid disease, aka Hashimoto's, which I assume you knew.

in reply to SeasideSusie

I don't know what caused you to flouce off before, but please remember that members who respond are only trying to help :)

They absolutely are, and I would never have regained my health to this level without this forum; I flounced after a clash of opinions over vaccines when my own anxiety was sky-high. I didn't exactly cover myself with glory so I was embarrassed to come back with my old username!

Vit D

previous results have been:

30/11/20 - 158 (75 - 175)

01/02/21 - 108 (75 - 175) I had virtually stopped taking vit D after the last test to see if I hold onto vitamin D. Turns out I dont!

13/04/21 -131 (75 - 175)

So i'm thinking perhaps 2000iu might be a maintenance dose for me if 4000 is increasing my levels.

Iron

I did try and get my GP to look at this but since my full bloods came back without showing anaemia she wouldn't run a full iron panel so I'm on my own with this one, unfortunately. I appreciate iron can be dangerous to supplement but i'm going to be doing my own test every 3 months to keep an eye on it. I was taking floradix for awhile, alongside the spatone but I was getting awful dizzy spells so i'm hesitant to take iron tablets again but my ferritin is so very low that I'll do what it takes to raise it.

B12

I stopped taking B12 when I ran out and hoped my B vits supplement would be enough but I'll buy some more seperate B12.

Folate

I've only been taking a supplement containing folate for 2 months and i've gone from 12% to 62% through the range. Will that reach a point of peak saturation, whereby the folate in my b-vits supplement will simply maintain a level? or should I be keeping an eye on it?

thank you, Susie 🙂

SeasideSusie profile image
SeasideSusieRemembering in reply to

plant_lady

For B12 and Folate I'd just buy a good quality B Complex. Have a look at Igennus Super B, at the recommended dose of 2 tablets you'll get 900mcg B12 and 400mcg Folate, you could always drop that down to 1 tablet if you think your levels are getting too high. I seem to need 400mcg methyfolate to maintain my level but you might find that 200mcg is enough for you. Excess B vitamins are said to be excreted.

pennyannie profile image
pennyannie

Hello Plant Lady

The accepted conversion ratio when on T4 - Levothyroxine only is 1 / 3.50 - 4.50 T3 / T4 :

with most people preferring to come in at around 4 or under :

So to find your conversion ratio you simply divide your T3 into your T4 and I get 4.50 :

I am positive this will improve when you get your ferritin to up and over 70 :

Spatone alone is not going to do this for you :

I took Spatone x 3 sachets + Solgar Gentle Iron at maximum dose plus ate liver twice a week for 6 months to gain a better level of ferritin and it took me over a year to get from 22 to over 70:

Prescription strength iron tablets - if you can tolerate them 322mcg x 3 a day would be a better option than any of the above and I would first ask your doctor if he can help you.

If your doctor won't prescribe I do believe you can purchase these higher strength tablets without a prescription.

You are showing over range antibodies so presume you have a diagnosis of Hashimoto's and understand many people find the work of Dr Izabella Wentz to be of value .

I read of suggestions to heal the gut and stomach wall, and remove food intolerances, such as gluten, dairy, processed foods etc that can cause your immune system response to trigger your AI thyroid disease.

There is much more detail on Hashimoto's Disease and all things thyroid on the Thyroid uk website, who are the charity who support this amazing forum should you wish to read further.

I'm with Graves Disease post RAI thyroid ablation - I hope I've helped a bit and not caused you to flounce off again !!!

in reply to pennyannie

I only flounced because I made a show of myself! 😳 not because of anything anyone else did.

I have been gluten-free for 6 months but have had a few accidental slip-ups lately and I've noticed stress really makes my symptoms flare-up. Once I've got a handle on being GF again I'm going to look at being dairy free but I'm already vegetarian and being GF, dairy-free, and soy-free gets so very restrictive. On the other hand, it if helps me feel well, then it's worth it isn't it?

I'm going to start taking more spatone and look into iron tablets. Floradix gave me dizzy spells so perhaps I need to try a different brand. I will also look into liver, despite being veggie, I just want to feel as well as I can.

It's taken me almost a year to get back to feeling 'well' since starting levo. I think the next year will be concentrating on getting my iron back up! Especially if low iron levels inhibits the conversion of T4. I'm hoping it will also help with my tinnitus. 🤞

Thank you, pennyannie.

pennyannie profile image
pennyannie in reply to

Spatone will not help you much - the dose per sachet is minimal :

Maybe look at Gentle Iron by Solgar ?

I couldn't tolerate the prescribed meds and purchased the above brand which was ok :

I'm sure there are other brands offering similar : this is just what I did when my stomach couldn't manage the basic iron supplements - I did ask for an alternative from my doctor but was declined.

in reply to pennyannie

I will look at gentle iron - thank you for the recommendation. It's such a minefield out there. It's a job to know which are the good supplements.

I am a marketer's dream - if left to my own devices will pick the one that looks the nicest!!

SlowDragon profile image
SlowDragonAdministrator

Obviously your ferritin needs a lot of work

Are you vegetarian or vegan?

Your high antibodies confirms cause is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Are you already on gluten free diet....if not

Poor gut function with Hashimoto’s can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

healthcheckshop.co.uk/store...?

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

in reply to SlowDragon

Thank you, Slowdragon.

I've been gluten-free for about 6 months but I've had a few small slip-ups lately and I can definitely feel the difference.

yes, I am veggie and lean towards vegan where I can but I've also found that with my appetite being so low I'm struggling to get the calories in so I eat quite a lot of cheese! I avoid soy but I don't exclude it completely.

Will look again at diet. Now I'm feeling better it's easier to contemplate the next dietary steps. More lentils, beans, and spinach! 🌱

SlowDragon profile image
SlowDragonAdministrator in reply to

Likely to need to supplement iron regularly as vegetarian. But essential to do full iron panel test 3-4 times a year to check iron doesn’t go to high

Medichecks offer full iron panel testing

Read humanbean many posts and replies on improving and maintaining good ferritin levels

Probably, as vegetarian need separate B12 daily, along with vitamin B complex

in reply to SlowDragon

Oh really? That's interesting. Is that just because it's harder to get iron as a vegan or because of hashis? or both! 😂

Will add B12 to the supplements order!

SlowDragon profile image
SlowDragonAdministrator in reply to

All plant based iron is non heme and much harder to absorb

Many vegetarians struggle to maintain optimal vitamin levels

But obviously with Hashimoto’s it’s doubly difficult

healthline.com/nutrition/in...

You may also like...

What should be my next step?

and FT3 low (likely that now enought FT4 converting to FT3). Folate is very low & Ferritin & Vit D...

What's the next step?

73% FT3 - 4.2 (3.1 - 6.8) 29% was previously TSH -1.37 (0.27 - 4.2) FT4 - 21.6 (12 - 22) 96% FT3 -...

Am I undermedicated? What should my next steps be?

of Levothyroxine. Results from 5th July: TSH 1.2 (normal range 0.27 - 4.2 mU/L) FT4 15.2 (normal...

What’s my next step here?

week and 125mcg 2 days. I just had my most recent test results: TSH 0.02 (0.27 - 4.2) FT4 17.5...

What is my next step for underactive thyroid services?

have been particularly helpful. I'm glad to be finally diagnosed but I want to know if there are...