Follow up - worsening symptoms and unsure of ne... - Thyroid UK

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Follow up - worsening symptoms and unsure of next steps

Ehal89 profile image
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Hi all,

I'm always very grateful for the help and wisdom that you all provide :)

This is a follow-up to a post I made last year about my partner: healthunlocked.com/thyroidu...

Unfortunately, we are in a bit of a conundrum now - in that some of the thyroid results are now what would be considered (by this group) as optimal, yet her symptoms are worsening significantly.

The symptoms are extreme hair loss and shedding, hirsuitism and now a strong intolerance to warmth. Could it be a sign of overreplacement of T4?

We are very unsure of how to proceed now. Should we consider other possible factors, potentially other autoimmune conditions? Potentially a reaction to the covid vaccine that has caused a major inflammatory response that hasn't abated?

We have followed much of the guidance advocated on this forum regarding supplementation, and increasing dose, but it's proving a bit more challenging to tackle.

To summarise, she is currently taking the following:

T4 - Euthyrox - 100mcg - following recommended gap before eating

T3 - Tiromel - 6.25mcg - taken alongside T4 in the morning

200mg spironolactone - taken twice daily

Cabergoline - 0.25mg taken twice a week

Igennus Super B complex - one tablet taken twice daily

Vitamin D3 - 4000IU taken once daily

Berberine - 1000mg taken as two 500mg doses

The latest test results are included below:

Inflammatory markers:

ESR - 47 (range: 2-20). This is of concern.

CRP - 5.3 (range: 0-4).

ENA test (autoimmune panel):

- Negative for Centromere, Jo-1, Scl-70, SMITH, SSA/Ro, SSB/LA, U1RNP antibodies.

Cortisol: 19.95 (range: 5.27-22.45) - this seems high - could it be a potential indicator of Cushings?

Thyroid Panel:

TSH: 0.27 (range: 0.35 - 5.5) - This has fallen from 2.97 in March and 4.19 in January

FT4: 20.4 (range: 11.9 - 21.6) - This has increased from 11.8 in March and 13.8 in January

FT3: 5.67 (range: 3.1 - 6.8) - This has increased from 4.6 in March and 5.54 in January

Anti-TPO (range 0-35) : borderline at 33.2 - this is a big surprise to us. It started at 151 when she was first diagnosed, and has been falling since.

Anti-TG: 178 - this is high and out of range, but has fallen since March (218) and January (276)

Insulin:

Fasted: 14.5 (range 3-25) - I understand that, although this is in range, it can be a sign of insulin resistance.

2 hours post breakfast: 52.5 (range 5-55) - this clarifies that insulin resistance is an issue?

Female Hormones Panel:

(note this is 2 days after her period has started):

Estradiol 103 pmol/l

FSH: 8.8 U/l

LH: 6.6 U/l

Progesterone: 1.55 nmol/l

Testosterone: 1.11 nmol/l (range: 0.29 to 1.67) <- this has had very wide fluctuation over previous tests.

Prolactin: 622nmol/l -> high -> she has started a small dose of Cabergoline to reduce this.

SHBG: 31.3nmol/l (range: 32.4-128) -> very low -> could this be the cause of her symptoms?

Free Androgen Index: 3.55 (this has increased from a low of 1.4 last year)

DHEAS: 124.53 (range: 25.9 - 460.2)

Iron Panel Test: there appear to be some issues here, but we are unsure of what...

Iron: 102 (range: 50-170)

UIBC: 82.7 (range: 135-392) -> very low

TIBC: 184.9 (range: 250-425) -> very low

Transferrin: 250 (range: 250-380) -> borderline low

Transferrin saturation: 29%

Ferritin: 150.3 (10-291) - this is normally less than 100 for her - could this be due to inflammation?

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Ehal89
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greygoose profile image
greygoose

some of the thyroid results are now what would be considered (by this group) as optimal

Well, no, we wouldn't consider that. Optimal is a feeling, not a number. The results might look good but if they're not right for the person concerned then they're not optimal. That FT3, for example:

FT3: 5.67 pmol/l (Range 3.1 - 6.8) 69.46%

That might be great for some people. But it wouldn't be high enough for me. Perhaps it's not high enough for your partner. It's not extremely high. Maybe she needs if more like 75% through the range. Or maybe even she needs it lower. Only she can tell.

Could it be too much T4? Yes, it possibly could - although her symptoms don't sound like that. The hair shedding could be due to low ferritin, because yes, that result could be due to her high inflammation, and her ferritin could actually be too low.

Hirsuitism? Has she been checked for PCOS?

Heat intolerance could be due to both under or over-medication.

Should we consider other possible factors, potentially other autoimmune conditions? Potentially a reaction to the covid vaccine that has caused a major inflammatory response that hasn't abated?

Well, that's a huge unknown, isn't it! COVID has upset a lot of apple carts, and we don't have the knowledge to know what is what. Having COVID or having the vaccines can cause a lot of long-lasting problems for a lot of people. I know I survived three lots of vaccines, and first two or three bouts of covid without consequences. But the last bout I had in July has really knocked me for six and I consider I'm still not quite over it. There's no way of really knowing.

Why is she taking spirolactonine, berberine and Cabergoline? These things have a ton of side effects. So, perhaps she should be asking herself are her problems due to one of these - or all of them - and does she really need them?

Anti-TPO (range 0-35) : borderline at 33.2 - this is a big surprise to us. It started at 151 when she was first diagnosed, and has been falling since.

Anti-TG: 178 - this is high and out of range, but has fallen since March (218) and January (276)

Forget the antibodies. They are irrelevant and not worth retesting. Antibodies fluctuate all the time, so it's no surprise if they go higher or lower, it doesn't have any effect on the disease itself. They tend to be highest during or just after a Hashi's 'hyper' swing, but that's because they have a job to do, not because they in any way affect the swing itself.

Cortisol: 19.95 (range: 5.27-22.45) - this seems high - could it be a potential indicator of Cushings?

Presumably this test was done early morning? If so, then the result is supposed to be high in-range. That's when the cortisol wakes you up and gets you out of bed and ready to start your day. It's not high enough to be Cushings, it looks pretty 'normal' to me.

SHBG: 31.3nmol/l (range: 32.4-128) -> very low -> could this be the cause of her symptoms?

SHBG is a protein carrier for transporting sex hormones. I don't think it causes any sort of symptom itself. But, I'm no expert of sex hormones!

So, what should she do next? Well, if it were me, I'd try reducing the levo slightly - the FT4 is too high for long-term good health - and increasing the T3 a coupld of weeks later.

What about her vit D, folate and B12? No mention of them. Are they good? Is she supplementing them?

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