What the heck, Thyroid!?

[Rexz]

Well, I found myself in this forum by following bread crumbs left by FancyPants54 Thankfully she's a bit messy with her snacks 😊

I've been on Pernicious anemia forum for the past few years dealing with my PA/AMAG. I think I may have been selected by whomever makes such selections to have the benefit of every known symptom and malady associated with advance stage PA including iron malabsorption/deficiency and gastric cancer. So my time has been spent dealing with all of that and am now very knowledgeable there. But I've been ignoring this Thyroid thingy!

So, why am I here? I was also diagnosed with Hashimoto's Thyroiditis back in 2021. I was prescribed and take Levothyroxine 75mcg and Liothyroxine 2.5 mcg.

I know nothing about Thyroid other than I have one.

I do have chronic fatigue that depending on the days is always there but sometimes less and sometimes severe. We know it can be related to B12, iron deficiency, and the chronic inflammation if autoimmune gastritis. But it can also be, in part, attributed to Thyroid. So I'm hear to learn from all you wonderful folks. Any advice or thoughts are appreciated. I will also be perusing previous posts.

Best wishes, Rexz

[SarahJane1471]

welcome. This is a great friendly knowledgeable forum. There’s a lot for you to learn but you will get there if you keep reading. At first it is all a bit confusing so persevere.

[J972]

Welcome Rexz, your post made me chuckle, which is never a bad thing….

It’s an absolute minefield, isn’t it? And you’ve had such a lot to contend with already.

I suppose as a starting point it’d be good to get ‘eyes’ on your most recent test results - TSH, FT3 and FT4 - plus your core vitamins and minerals, thus:

vitamin D

Ferritin

Folate

B12 - although I expect yours will be elevated!

What’s your diet like? Lots of us are gluten and dairy free for example.

J9 🙌🏼

[Rexz in reply to J972]

Hi J9, Lol, yeah I think injecting some humor into all of this is what helped get through it all. It's my medicine. 🙃

My serum B12 is pegged at 2000 pg/mL, the highest my lab here in US will read as I inject 2000 mcg methylcobalamin every 4 to 7 days. My Ferritin is all over the place. I've had 11 Iron infusions in 2023 with the last one two weeks ago I will have a complete iron panel done at the end of this month. I expect Ferritin will now be above 100 ng/mL which is where we try to keep it. Normal range Ferritin here is 30-400 ng/mL. I supplement D3 10,000 IU daily. Not sure what my folate is but I do take a daily sublingual folate supplement.

My diet, changed drastically three years ago to dairy, gluten, sugar, caffeine, and if course "fun" free😊.

I show antibodies but my T3, T4, TSH are now within reference range.

Latest Thyroid results...

Thyroglobulin antibodies = 11 w/reference range < or = 1 IU/mL

Thyroid Peroxidase antibodies = 45 with reference range < 9 IU/mL

T4, Free = 1.2 with ref range 0.8-1.8 ng/dL

TSH = 1.07 with ref range 0.4-4.5 mIU/L

T3, Free = 3.2 with ref rangec2.3-4.2 pg/mL

Rexz

[SlowDragon Administrator]

I was prescribed and take Levothyroxine 75mcg and Liothyroxine 2.5 mcg.

That’s quite a low dose, especially for a bloke

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum especially with Hashimoto’s

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

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

On T3 - day before test split T3 as 2 or 3 smaller doses spread through the day with last dose 8-12 hours before test

Might not really feasible on only 2.5mcg …..but if possible split the the dose day before test

Are you on B12 injections or daily supplements

Are you also taking any daily vitamin B complex, vitamin D or magnesium

What are your most recent folate, ferritin and Vitamin D results and ranges

[Rexz in reply to SlowDragon]

See my post above for test results.I was told Hypothyroid concomitant with PA was Hash?? But anyway is autoimmune thyroid. Not sure if goitre?

I was on 5 mcg of Liothyronine but start having heart palps so it was halved and heart palps stopped.

[SlowDragon Administrator in reply to Rexz]

Retest 8-10 weeks after any dose reduction

6-8 weeks after any dose increase

[SlowDragon Administrator in reply to Rexz]

Heart palpitations can be low ferritin ….Not necessarily T3

My Ferritin is all over the place. I've had 11 Iron infusions in 2023 with the last one two weeks ago I will have a complete iron panel done at the end of this month.

Conversion of Ft4 to Ft3 is frequently poor when ferritin below 70

I expect Ferritin will now be above 100 ng/mL which is where we try to keep it

brilliant plan

[Rexz in reply to SlowDragon]

Yes heart palps can also be Ferritin. When I had the heart palp issue with the 5mcg Liothyronine is was back in January 2021 just after I started that dose and before my Ferritin tanked which was somewhat coincident with my achlorhydria diagnosed which my stomach pH was measured during an endoscopy. My first Ferritin below normal was January 2022 where I had all the iron def symptoms including heart palpds but I had a delay in treatment because I had no associated anemia.

Thank you so much for all your help and thoughts.

Rexz

[Rexz in reply to SlowDragon]

I'm guessing that if T3, T4, TSH are within reference range then this would not be the cause of fatigue? It would seem to be the case but I just don't know enough about it

[J972]

I can’t fault your logic, but, no! The ranges are largely inadequate from the point of view of the hypothyroid patient who wants to improve their health. For example, generally speaking someone without a thyroid problem (euthyroid) would have a TSH ~1. To feel well, we need our FT3 and FT4 to be in the upper 1/4 of the range. So there’s ‘in range’ and there’s ‘optimal’.

[J972]

This is useful to have

healthunlocked.com/redirect...

[Rexz in reply to J972]

Thank for J9

So all of my T3, T4, and TSH could use a boost. Do I do that by increasing the dose of thyroid meds? 🤔

[J972]

In part, yes, but also by optimising those core vitamins and minerals - but you’re on that 👌

I’ve always been advised to increase one thing at a time and, as slowdragon has said, your levothyroxine dose is pretty low. Why did you start adding the T3, can I ask?

[Rexz in reply to J972]

When you say "add T3" are you referring test? Or is levothyroxine T3?

[J972]

Liothyroxine

Usually folk add it if their conversion from Levo (T4) is poor…

[Rexz in reply to J972]

Ah OK, I just was diagnosed in early 2021 and doc prescribed that. Been taking it ever since. What led to diagnosis is my PA plus I was having symptoms of hypothyroid like unexplained chills, etc.

[Forestgarden in reply to J972]

Just to clarify, you mean liothyronine (which is t3) and levothyroxine (which is t4). Are you taking both meds?

[J972 in reply to Forestgarden]

Yes, liothyronine! Thanks for bringing it up. I copied and pasted from Rexz’s message above - Rexz can I please check that it’s levothyroxine (t4) and liothyronine (t3) that you’re taking?

[Rexz in reply to Forestgarden]

Yes, I'm taking both of those.

[J972]

Thanks. SlowDragon would you suggest that Rexz increases his Levothyroxine to 100mcg? Retesting in 6-8 weeks?

[J972]

Hi SlowDragon , I’m wondering whether Rexz should increase his levothyroxine by 25mcg, what do you think? Many thanks 🙏

[SlowDragon Administrator in reply to J972]

FT4: 1.2 pmol/l (Range 0.8 - 1.8)

Ft4 only 40.00% through range

FT3: 3.2 pmol/l (Range 2.3 - 4.2)

Ft3 47.37% through range

So yes …..I would increase Levothyroxine

Initially by 12.5mcg

Wait 4-6 weeks then increase again…so increase in total by 25mcg daily

Retest 6-10 weeks later

[J972 in reply to SlowDragon]

Thanks for that 🙌🏼

[Rexz in reply to SlowDragon]

Thank you so much SlowDragon and J972 for your help with this. I started the increased Dose of Levothyroxine by 12.5 mcg this past Monday and will ask doc test test in 8 weeks.

Best wishes, Rexz