Good news and "Bad" News : Well, I have good news... - Thyroid UK

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Good news and "Bad" News

Joyya profile image
31 Replies

Well, I have good news and bad news.

1. The first good news is my fT4 and fT3 look very good BUT my TSH is very much below range and I don't want my doctor to freak out.

I sent the 2 Midgley papers and a presentation from a pro-t4/T3 Endo in the US , but anything else you can think of would be appreciated

T3 Free = 4.7 (2.6-5.8 pmol/L)

T4 Free = 14.4 (10.6-19.7 pmol/L)

TSH = 0.10*** (0.32-5.04 mU/L)

2. The second good news is my Thyroglobulin antibodies are not elevated

Thyroglobulin Ab = 14 (<40 IU/mL)

On August 18, 2022, my Thyroperoxidase antibodies were also not elevated;

Thyroperoxidase-Ab = 9 (<35 IU/mL)

3. I know why I am so tired, but confused how to fix it.

• Iron stores (ferritin) are okay

• hematology panel is low-normal

• BUT serum iron and iron saturation are really low

• I eat liver every week, and take heme polysaccharide, so this is an absorption problem.

• I am suspecting this is hypochlorhydria (low stomach acid).

• I’ve tried Betaine just before meals, but didn’t agree with me. Should I take it a different way?

• I bought some new Apple Cider Vinegar, but when to take it?

Ferritin 93 (15-247 ug/L)

Interpretation: >100 ug/L: normal iron stores

Iron = 11.9* (10.6-33.8 umol/L)

Transferrin = 3.07 (2.00-4.00 g/L)

Iron Saturation = 0.15* (0.13-0.50)

Hematology panel was:

Hemoglobin = 122 (115-155 g/L)

Hematocrit = 0.37* (0.35-0.45 L/L)

MCV = 88 (82-98 fl)

MCH = 29.5 (27.5-33.5 pg)

MCHC = 334 (300-370 g/L)

Help/Ideas most appreciated!

Thanks in advance!

Joyya

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Joyya
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tattybogle profile image
tattybogle

Low TSH raises 'heart and bones' concerns in Doctors.

This deals with the 'bone' issue: healthunlocked.com/thyroidu...

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

This is the one i used for my GP when my TSH was 0,05 .. much lower than yours... deals with the 'heart ' issue and clearly shows your TSH of 0.1 to be 'not a problem' , anything over 0.04 was shown to be no more of risk than 'in range' TSH in this very large/ long term observational study:

academic.oup.com/jcem/artic...

Context: For patients on T4 replacement, the dose is guided by serum TSH concentrations, but some patients request higher doses due to adverse symptoms.

Objective: The aim of the study was to determine the safety of patients having a low but not suppressed serum TSH when receiving long-term T4 replacement.

Design: We conducted an observational cohort study, using data linkage from regional datasets between 1993 and 2001.

Setting: A population-based study of all patients in Tayside, Scotland, was performed.

Patients: All patients taking T4 replacement therapy (n = 17,684) were included.

Main Outcome Measures: Fatal and nonfatal endpoints were considered for cardiovascular disease, dysrhythmias, and fractures. Patients were categorized as having a suppressed TSH (≤0.03 mU/liter), low TSH (0.04–0.4 mU/liter), normal TSH (0.4–4.0 mU/liter), or raised TSH (>4.0 mU/liter).

Results: Cardiovascular disease, dysrhythmias, and fractures were increased in patients with a high TSH: adjusted hazards ratio, 1.95 (1.73–2.21), 1.80 (1.33–2.44), and 1.83 (1.41–2.37), respectively; and patients with a suppressed TSH: 1.37 (1.17–1.60), 1.6 (1.10–2.33), and 2.02 (1.55–2.62), respectively, when compared to patients with a TSH in the laboratory reference range. Patients with a low TSH did not have an increased risk of any of these outcomes [hazards ratio: 1.1 (0.99–1.123), 1.13 (0.88–1.47), and 1.13 (0.92–1.39), respectively].

Conclusions: Patients with a high or suppressed TSH had an increased risk of cardiovascular disease, dysrhythmias, and fractures, but patients with a low but unsuppressed TSH did not. It may be safe for patients treated with T4 to have a low but not suppressed serum TSH concentration.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

healthunlocked.com/thyroidu...

~ see my reply to this post (3rd reply down) for list of other useful posts/ papers on subject of low TSH / risk / quality of life.

Joyya profile image
Joyya in reply to tattybogle

Brilliant!! Thanks!!

I will read the whole thread and download the paper. Just what I needed!

TiggerMe profile image
TiggerMe

Hi Joyya

Much the same as my iron levels.... you haven't mentioned B12 or Vit D which are essential to get your iron levels up?

WhyAmISoTired

"One should also keep mind that a B12 deficiency can mask an iron deficiency, so that ferritin levels may look good when they aren't."

Here's the science bit care of WhyAmISoTired

healthunlocked.com/redirect...

This might be the missing link and is what I am working on 😉

Here is a link to loads of information previously discussed by the better informed amongst us, talking all things iron related.... pop the kettle on before opening 🤗

healthunlocked.com/thyroidu...

Joyya profile image
Joyya in reply to TiggerMe

Thanks.

My B12 was tested in August and was 677*(152-655 pmol/l) and I have been taking 5,000 IU vitamin D3 plus 100 mcg K2 MK-7 per day for ~5 years.

Yes, I am certainly wanting to get ferritin > 100, but for that it will take addressing the very poor serum iron and iron saturation. It's not B12 or folate (taking 100 mg methylated folate daily for 1 year), and it's not B6 (also taking daily for 1 year). It's not inadequate intake of heme iron or vitamin C (take 1000 mg / day), so I assume it's poor iron absorption from the small intestine due to high gastric pH (hylochlorhydria). Am I missing something?

TiggerMe profile image
TiggerMe in reply to Joyya

You are doing a whole lot better than there then!.... This whole iron thing is a bit of a mystery to me.... we shall await the knowledgeable ones to put us straight 🙏

Perhaps your only option is an iron infusion?

Joyya profile image
Joyya in reply to TiggerMe

Yes and no. I have a post grad degree in human nutrition, but hypochorhydria is new to me, as is hypothyroidism! The two go together, so any help with using Betaine so it doesn't feel like it's eating my stomach would be helpful. I read today to eat protein first in a meal as it increases gastric acid, so I'm going to do that and take apple cider vinegar and water before each meal.

Appreciate your input!

TiggerMe profile image
TiggerMe in reply to Joyya

It is so hard to keep all the balls in the air!! I shall follow with interest

Joyya profile image
Joyya in reply to TiggerMe

I am always in the literature so I will share what I'm learning in case it can help others, including you.



TiggerMe profile image
TiggerMe in reply to Joyya

Great, thank you

I'm only just getting my brain back into gear, I've started reading lots but don't always store it all which is frustrating but such a huge improvement from the last 4 years when I couldn't even remember 1 page if I could even be bothered to try.

I could honestly do wordle every 10 minutes 😕

Other people's bit sized findings are so helpful

melodie profile image
melodie in reply to Joyya

I’d appreciate this so much Joyya

Imaaan profile image
Imaaan in reply to Joyya

How much heme iron are you taking? I haven't seen any that are over 11mg per pill.

As for the hcl, how much was the dose that didnt agree with you? I tried 200 and it was too much for my stomach and then tried 50 and that was a good amount that I could tolerate.

Joyya profile image
Joyya in reply to Imaaan

Haha, 500 mg Betaine HCL, but they are capsules, so I can put half in a blank gelatin capsule. I will try that, thanks! I was fine last night when I took it just as I was about to eat (rather than 1/2 hour ahead of time).

The heme polypeptide is 232 mg (116 mg elemental iron) but I just read on the bottle it can be taken 2-3 times a day. Since it is best absorbed if taken every second day, I will try to fit in taking 2 per day (between meals and also 4 hours away from meds).

Thanks for your insights!

radd profile image
radd in reply to Joyya

Joyya

Gastric acid's natural production prior to food ingestion via visual & olfactory stimuli and then taste, etc amounts to tiny secretions. Therefore, the large amount of Betaine HCL we supplement should be taken with your meal, & never before as a large amount of gastric acid needs something to work on.

I take mine about half way through the meal, and sometimes half the dose halfway through the meal, and rest at the end. I take more if the meal is protein heavy.

Imaaan profile image
Imaaan in reply to Joyya

Can you share the name of the heme iron you're using??? I hope the reduction of hcl works out for you and if not you can ask me the brand I'm using since it only has 50 in it. I always take the hcl supplement after I eat.

Joyya profile image
Joyya in reply to Imaaan

I am using a heme iron supplement made in Canada, called Heme Boost.

I am curious where you read/head about taking the HCL supplement after meals?

Thanks!

Imaaan profile image
Imaaan in reply to Joyya

I never read it anywhere. I just decided to eat it afterwards to avoid irritating my stomach since I've had issues with gastritis in the past. I use the food as a buffer mechanis. Thanks for sharing the name of the heme.

Imaaan profile image
Imaaan in reply to Joyya

Hey Joyya,

I just had a look at the Heme boost and it just has 11.6 mg of iron. I copied and pasted below to show you;

Each tablet contains 232 mg of Heme Iron Polypeptide giving 11.6 mg of elemental iron

Your issue might not necessarily be absorption issues caused by low acid since 11.6 mg of elemental iron is a mere amount. In comparison, Feramax has 150mg of elemental iron.

I know heme is better absorbed in the body but you would need to take several pills of heme iron. I take 4 pills of Optifera which is 44mg of heme iron.

Joyya profile image
Joyya in reply to Imaaan

Wow. Talk about hypothyroid brain fog. I never even checked! Amazon was out of the one I usually order (Polyride Fe—Polysaccharide Iron Complex) that has 150 mg Elemental Iron and I saw "heme polypeptide"and just assumed it was the same. Thank you for catching that!

From what you can see, is there any difference between that one and Feramax 150? It didn't seem so to me, just $10 less a bottle.

The Optifer Alpha heme iron here only has 11.6 mg Elemental Iron in it.

Thank you checking!

Imaaan profile image
Imaaan in reply to Joyya

I had a look at the Polyride Fe and it seems that it might be the better choice if you're looking for an additional b12 and vitamin c.

Personally I would have stuck with the Optifera if it had more iron than 11mg in a pill. Taking 4 pills a day was getting costly and that's why I switched up to Feramax last month on the recommendation of my pharmacist.

Joyya profile image
Joyya in reply to Imaaan

Thanks.

I am currently taking 4 of the Heme Boost until I use them up. Thanks again for catching what I clearly missed.

The last Polyride Fe I ordered didn't have B12 or vitamin C in it. Maybe they changed the formulation or there are two types.

Lovecake profile image
Lovecake

Do you still have hypo symptoms?

I don’t think I’d feel particularly good with FT4 and FT3 levels that low.

Did you have the blood test first thing in the morning with only having water? And take your last T4 meds the day before?

I assume you are on thyroxine (or similar) only?

Joyya profile image
Joyya

I still have symptoms but mostly tired (which could be attributed to the low serum iron and low iron saturation. Taking my meds in 3 doses does seem to help.

My meds are 0.75 mcg Synthroid and 10 mcg Cytomel originally split in 2 doses, now 3.

I took 1/2 Synthroid and 1/2 Cytomel 12 hours before the test, which was at 7 AM and I ate breakfast and had coffee (no one told me otherwise).

blondpalomino profile image
blondpalomino in reply to Joyya

Hi Joyya,

As you are taking T3 (Cytomel) your TSH will be supressed. Mine is 0.004 and never moves. Anyone who is taking T3 will have a supressed TSH because they are giving you T3 so the body(pituitary gland) doesn't need to release the thyroid stimulating hormone to stimulate your thyroid to release T3 and T4. Unfortunately most doctors don't seem to have a good understanding as to how it works, even some Endo's as well!

Joyya profile image
Joyya in reply to blondpalomino

Yeah, I am going to have that "feedback mechanism" discussion with my doctor on Thursday. All biological systems have them, so why would the thyroid be different? I think (hope!) he will "get" it.

If there was a good academic paper that explained it that I could give him, it would help.

Joyya profile image
Joyya in reply to blondpalomino

I just found a helpful diagram from a 2007 study that shows TSH suppression on combined T4/T3 medication (10 mcg T3 plus T4).

Saravanan et al, Exp Clin Endocrinol Diabetes 2007; 115: 263

24 hr profiles of TSH, fT3, fT3 on Combined T3/T4 Therapy (Saravanan P et al 2007)
blondpalomino profile image
blondpalomino in reply to Joyya

is the one at the bottom T4 alone? It should be the other way around, TSH will be higher if you are just on T4.

Joyya profile image
Joyya

The diagram is median values, from the paper, "median TSH was higher (T3 / T4:T4 = 3.5:0.7 mU / L, range – T3 / T4:T4 = < 0.01,15.3: < 0.01,2.7, p < 0.001) as a result of T3 substitution" BUT also from the paper, "patients in the T3 / T4 group and none in the T4 alone had a mean TSH higher than the lab normal range. One patient in the T3 / T4 and 2 in the T4 alone had a suppressed TSH level throughout the 24-hour period (which really speaks to individual variation)!

cazlooks profile image
cazlooks

tsh is thyroid stimulating hormone, it stimulates t4 to be converted to t3 (the form that the body can use). You take t3 artificially, you don't need tsh any more.

Joyya profile image
Joyya in reply to cazlooks

Yes, thank you. It's a standard feedback mechanism.

Regenallotment profile image
Regenallotment

hi,

I take betaine with pepsin during or after meals with high protein. I can take two sometimes 3 tablets to achieve the most amazing feeling satiated but not bloated. It’s a game changer. Having used it daily for about 6 weeks, I only need it occasionally now.

ACV I take before breakfast in a small glass of water.

Izabella Wentz suggests upping the betaine dose till you feel burning throat sensation and you know to drop back a dose. I haven’t ever gone that far! But I think this is where I read to take it with food.

Wishing you the best with it 🦋💚🦋

Joyya profile image
Joyya

Thanks. You mention taking 2-3 tablets of Betaine with meals, but not the strength.

What is the reason you take it, also for iron absorption?

I have been taking the ACV exactly like that!

Thanks!

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