Advice regarding Thyroid levels

[Justine_Case]

Hi Could do with some advice regarding my thyroid test levels.

I have Hashimoto's but am not taking thyroid medication due to my TSH levels not being high enough yet.

I was diagnosed just over 2 years ago after my health had declined for several years.

My GP did however agree to a 25mcg Levothyroxine 6-week trial last Summer, which to be honest, made me feel worse.

My levels came down a little after the trial, so she said I should wait until they were high enough to be treated permanently.

Anyway, in the meantime I decided to tackle my vitamins.

For around 2 years I was supplementing B12 vitamins plus Thorne B Complex several times a week, as I was experiencing tingling/tinnitus/buzzing symptoms amongst many others.

I wasn't sure if the Thyroid problem was responsible, but reasoned B12 should be fine to take regardless.

I also take Ferrous fumarate 3 times a week as my iron levels tend to be on the low side (I test regularly via a private Iron Panel)

I also take D3/k2 spray and Zinc and Magnesium.

My neurological symptoms were getting worse towards the end of last year, so I decided to try B12 injections, which I started around Christmas.

Before this:

In July 2023 my Thyroid levels were -

TSH 4.49 mIU/L (0.27 - 4.2) 107.4%

Free T4 (fT4) 12.7 pmol/L (12 - 22) 7.0%

Free T3 (fT3) 4 pmol/L (3.1 - 6.8) 24.3%

I started the 25mcg thyroxine for 6 weeks after this test around August 23.

By October 2023 2 months before the B12 injections my Thyroid results via MMH were -

TSH 4.150 mIU/L (0.35 - 5.5) 73.8%

Free T4 (fT4) 13.10 pmol/L (11.9 - 21.6) 12.4%

Free T3 (fT3) 3.7 pmol/L (3.1 - 6.8) 16.2%

Then 05 January 2024 - during B12 injections

TSH 3.9 mIU/L (0.35 - 5.5) 68.9%

Free T4 (fT4) 13.40 pmol/L (11.9 - 21.6) 15.5%

Free T3 (fT3) 4.79 pmol/L (3.1 - 6.8) 45.7%

Thyroglobulin Antibodies (TgAb) 43.1 IU/mL

Thyroid Peroxidase Antibodies (TPO) 230 IU/mL (≤ 34.9)

Now my GP tested last week 26.01.24 just my TSH -

Serum TSH level 1.96 U/mL [0.38 - 5.33]

This seems a big difference between the TSH and T3/T4 levels, the only thing I think has changed is my injecting with the B12.

Does anyone know if this would make a difference to my levels?

Or is this typical of thyroid disease to change this much?

In particular, I am wondering why my most recent TSH has dropped by quite a bit.

For the record, I am Gluten/Dairy/Soy free, and had all blood tests early morning with no Biotin the week before.

Advice appreciated.

[SlowDragon Administrator]

So you needed to get dose increase in Levo to 50mcg after October test results

And retest 6-8 weeks after increasing to 50mcg

Levo doesn’t “top up” failing thyroid, it replaces it, so it’s essential to get dose increased as fast as tolerated

Standard STARTER dose is 50mcg unless over 65 years old

Starting on 25mcg frequently makes symptoms worse

guidelines on dose levothyroxine by weight

Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine:

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

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

Starting on levothyroxine…..good explanations

healthunlocked.com/thyroidu...

[Justine_Case in reply to SlowDragon]

Thank you for your reply, I will check your links.

My GP wouldn't consider keeping me on thyroxine, as my TSH dropped a bit (as to be expected) after my 6-week trial.

She has agreed, however, to test me more regularly - hence the one last week.

The thing is as my TSH is now - 1.96 U/mL [0.38 - 5.33] I am pretty sure I won't be put on thyroxine any time soon.

My symptoms are still awful, and I am not sure if I am dealing with a lack of B12 (I tested negative for pernicious anemia, but have gastritis and ulcers so possibly have poor absorption)

Or if my symptoms are just thyroid-related.

This is getting me down.

This is the lowest my TSH has been in over 3 years, so I wondered if my B12 injections were responsible, as in do they 'help' lower TSH levels, and raise T3/T4 levels?

[TiggerMe Ambassador]

You have autoimmune thyroiditis which often means that it flares up when the thyroid is under attack, if you can keep your folate, ferritin, B12 and Vit D well up in their ranges this will hopefully help make the best use of the hormone you are producing...

Looks like you had a flare and now it has calmed down but without the fT3 & 4 results to go with the latest TSH we don't know where your levels are

[Justine_Case in reply to TiggerMe]

Hi thank you for replying.

So I understand (I think!) about Hashimotos causing flares, I do get palpitations and am jittery when this happens. So this can cause the TSH to drop as I get more hyper symptoms?

The thing is, at the time of the most recent low TSH result, I wasn't experiencing any of those 'flare symptoms'.

So I wondered if the B12 injections I have been using since Christmas are making a difference, especially with my Jan 5th test, which had a big rise in my T3 and T4 levels, and subsequently my TSH?

[TiggerMe Ambassador in reply to Justine_Case]

Your earlier results show your thyroid is struggling higher TSH and your fT3 levels are higher than your fT4

I didn't really understand why you were taken off the T4 trial as your TSH dropped a little? That is what it is aiming to achieve a TSH around 1

Good B12 levels certainly help along with all the other essentials but your thyroid levels are going to keep bobbing up and down but gradually falling as it is destroyed

[Hedgeree]

Hi Justine_Case,

Were your blood tests all taken at similar times? I know from reading on the forum that TSH levels change throughout the day.

Are you a vegetarian? I know from experience it can be a challenge keeping levels up; more so for me with ferritin than iron.

I realise your GP has just recently done a TSH test but it may be useful for your records to get full thyroid testing done yourself privately.

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Medichecks 20% off use code JAN20 at checkout

Monitor My Health 20% off use code MMHJAN20 at checkout.

[Justine_Case in reply to Hedgeree]

Both the GP testing and my private tests have been around 8.30 am.

I'm not vegetarian, but red meat seems to 'pass through' me quickly!

Interesting what you said about ferritin.

I did a private iron panel test recently, which said my iron levels were pretty good, but the GP ferritin test from last week was - Serum ferritin level 55 ug/L [11.0 - 307.0] which is marked 'borderline'.

This is despite my taking one ferrous fumarate 210 tablet daily.

Thanks for replying!

[Bertiepuss in reply to Justine_Case]

Hi Justine_Case I have be dealing with chronic iron deficiency myself so have been doing much research on the subject. In September last year I was at 8ug/L and anaemic. I have been working on raising my ferritin, it's a slow process and takes many months! Like you, I'm also investigating thyroid disfunction although I don't have the raised antibodies you have. Your ferritin at 55ug/L is on the low side and it is said that ideally it needs to be around 100ug/L, for some people even a little higher especially if they have been deficient for a long time. To build your iron stores (ferritin) you need quite a lot of iron in the form of supplementation (or infusion) if you don't get plenty in your diet, or you don't absorb it well, or you have a cause that makes you loose iron like heavy periods. 1 tablet a day of ferrous fumarate is likely not enough, although this varies from person to person. But, it's important to not over-do iron hence good to check with the iron panel to make sure your serum iron and %saturation are not over range.

As you know, if you are low (or not optimal) in ferritin, vit B12, folate and vit D you can experience symptoms that have some overlap with thyroid dysfunction. Good you are addressing these at the same time as the autoimmune thyroid problem that's going on.

I can't answer about the B12 affecting thyroid levels as I started B12 injections in December myself - looks like we are trying the same routes to improve things! This won't help much, but just to empathise, I too feel really rough, and have done for a long time, so I do understand how difficult it is to try and unpick what is going on.

This article I found very useful in understanding iron deficiency. oatext.com/iron-deficiency-...

Another one relating iron deficiency and thyroid problems. thyroidpharmacist.com/artic...

I also joined an Iron Deficiency Facebook group that helped me immensely in understanding how to improve ferritin levels safely. The group has a comprehensive set of guides (about 3 hours of reading!) that takes you through a process on how to get levels up, taking out much of the guess work. Also covers pitfalls and how to correctly interpret the iron panel so you can check progress and stay within safe limits. Do you use FB?

[Justine_Case in reply to Bertiepuss]

Hi I think I do have an absorption problem, and have read on here that it is common in those with thyroid issues.

I thought because my Iron levels were quite good, that my ferritin would be as well - but it seems not

I do eat a lot of green leafy vegetables, and red meat which as I said before, doesn't stay digested for long!

Since giving up gluten dairy and soy, I have been trying to eat as well as possible. I have no regrets about stopping those foods as they made me feel so much worse.

So like you, I felt I had no choice but to try B12 injections due to worsening symptoms.

I reasoned if I am having to supplement vitamin D/ferritin/zinc etc due to poor levels, I may not be absorbing the B12 tablets into my cells.

I will take a look at the articles you have linked, and look out for the Facebook group when I go back onto it.

All of this journey is a work in progress, hopefully we will get there!

[Bertiepuss in reply to Justine_Case]

Yep, finding our way with trial and error, self-medicating and private testing. Thank goodness we have the support of others on here! The facebook group is called 'The Iron Protocol (For iron deficiency with or without anaemia)'. Look for the USA one. You will need to join the group to access the guides and then be prepared for the 3 hour read! It's worth it though.

[Wua13262348 in reply to Justine_Case]

Many years ago I thought red meat , if beef, caused me diarrhoea. I gave up beef for many years because of this. Many years later I've come to realise it is not the beef that is the problem. I have a problem with gravy. I have a problem with the mushrooms and the onions I would have to accompany a steak. Mostly if having red meat , such as mince , I would put onions through it. It turns out I have a problem with anything that breaks down into sulphur. Onions , garlic , eggs and cruciferous vegetables break down to sulphur, for instance. My worst intolerance is egg white. The protein in egg white is albumin. If I've read correctly, and I may be wrong, c.20% of thyroid hormones use albumin and sulphates as carrier proteins to bind them. I wonder whether my thyroid is 20% deficient because of an inability to properly bind c. 20% of thyroid hormones T4 and T3, because of this. I do not have TPO or TGab antibodies, and supposedly no autoimmune damage to my thyroid on thyroid ultrasound, despite now having 3 thyroid nodules.

I have a double CBS mutation, and my particular mutation , per Izabella Wentz , up-regulates selenium (brazil nuts are one of my food intolerances) and causes an underactive thyroid. She does not explain the mechanism by which the thyroid is made underactive. I'm guessing it is because of what I have said I suspect above- that the problem to do with the body's handling of sulphur may mean that I have a problem binding thyroid hormone to transport proteins???

She also says that this mutation causes me to "lose Vitamin B12 too quickly. " Like you, I too have a B12 problem. She does not explain the mechanism of how or why this happens. I wondered if it may mean that I do not put B12 into storage in the liver, but have "active b12" on a day to day basis from what I eat and supplement, but not the capacity to draw on reserves from the liver to top up my levels in times of need, nor the capacity to store B12 in excess of my needs.

If anyone understands what she means by CBS mutations causing an underactive thyroid and causing you to lose vitamin B12 too quickly, I'm all ears! I think many of us on the forum may have this problem, not just me. Up-regulated selenium would, I believe , discourage both TPO and TGab antibodies, which I am negative for. My genetics , though I have hypothyroidism , are geared to TRab , usually associated with Graves, hyperthyroid. Like many on the forum, I have double mutations for signalling problems in my thyroid genetics. I have a DIO1 mutation, but not DIO2 mutations.

In November 2022 I had my ferritin exactly where I wanted it at optimal. In the past year it has almost halved.

[Justine_Case in reply to Wua13262348]

It is so difficult to know what to do regarding symptoms and improving quality of life.

Is it food intolerances?

Is it low B12

low B vitamins

low vitamin D

zinc

magnesium

iron/ferritin

folate

potassium

calcium

selenium

or 'just' thyroid disease

I did test for genetic traits and carry 1 MTHFR a129c mutation, but I gather most people have these, so I didn't place any significance on it.

As for losing B12 too quickly and not storing it sufficiently in the liver, this makes sense and could account for my feeling so rubbish.

Only time will tell if the B12 injections make a difference.

As for now, I seem to be becoming more hyperthyroid (after years of hypo) so I'm not sure if it will become Graves disease.

This is so not fun