Results please help: Hi everyone. I have been... - Thyroid UK

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Results please help

WED2012 profile image
19 Replies

Hi everyone. I have been diagnosed with underactive thyroid in my 20's im 49 now. On 50 mmg daily for many years.

In August 2023 my bloods were

Tsh -6.52 miu/L (0.35 -4.94)

FreeT4 -12.8pmol (9.01 - 19.05)

Free T3- 4pmol ( 2.63 -5.7)

My gp up my medications another 50mmg

In October 23

Tsh 2.79. She did not test T3 or T4.

I have told her this is to high which she up another 25mmg

In mean time my hair is falling and it has Neen since last year I had corrected few vitamins issues and they are ok now. overall feeling is not to good.

I just got my new blood results and they are

Jan 2024

Tsh 1.34 (0.35 - 4.94)

Free T4 16.20 (9.01-19.05)

FreeT3 4.10 (2.63-5.7)

So currently I'm on 120 of levo and I feel horrific I gained weight and my hair is falling which makes me so upset. Please help does this look OK?

Thank you so much

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WED2012
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19 Replies
Forestgarden profile image
Forestgarden

Hi there, your results look ok, but how quickly did you go from 50 to 120mcg levo? If you are losing hair it suggests too rapid an increase. Personally I like to make 12.5mcg changes, then wait a few weeks before making another change. The body doesn't like a sudden change. Your August ft4 results definitely look low, and much improved now. Interestingly your ft3 hasn't changed much at all, so maybe this is where your body is 'happy' to be. Is there any other reason you can think of for your weight gain? How exactly do you feel in yourself? What are your other symptoms? How did you feel before when you were on 50mcg?

WED2012 profile image
WED2012 in reply to Forestgarden

Hi Thank you so much for replying. She has been upping my meds every 8 weeks. When my vit depleted that's when I noticed my thyroid results high. Keep in mind I have not changed my levothyroxine amount in 20 years and honestly i didnt even know i had this issue i was feeling that good.

I have Gp appt 2morrow and I'm trying to figure out what else I can do and say to her in regards to my hair loss. I have been very unwell before but I was low on vitaminb12, vitD , iron and foliate. I gained weight and the only thing I can think of is the great time of woman's life called menopause. :) other then that I feel alot better the before my levothyroxine got adjusted and the long process of getting my vitamins in optimal level. But once again my vit are depleting and I'm scared.:(

greygoose profile image
greygoose

Tsh 1.34 (0.35 - 4.94)

Free T4 16.20 (9.01-19.05) 71.61%

FreeT3 4.10 (2.63-5.7) 47.88%

Well, your TSH is still slightly on the high-side, for someone on thyroid hormone replacement. And that is because your FT3 is low. It should be at least over 50% - probably more like 75% through the range. And it's low T3 that causes symptoms like hair-loss.

Your FT4 is probably ok, although there would be room for a 12.5 mcg increase. But I don't think that would help your FT3 very much because you're a poor converter.

since last year I had corrected few vitamins issues and they are ok now

Are you sure about that? Because sub-optimal nutrients will negatively affect conversion of T4 to T3. Are you still supplementing or did you stop once the levels reached optimal?

WED2012 profile image
WED2012 in reply to greygoose

Hi Thank you so much for your reply.

I have gp appt 2morrow and let me tell you my battle with my vitamis

Back in Sept 2022 my levels of vitamis were horrific which I think depleted my thyroid eventually.

VitD -31nmol(50-150)

B12 - 177ng/l (187-883)

Folate 3.9 ng (3.1- 20.5)

Ferritin 17ng (20- 204)

So as you can see I was really unwell all my gp did is prescription for iron and told me to det vitD and b12 at boots. I got scared and went to Poland to see a private Doctor when he seen my results he could not belive it so I got Iron infusion and set of b12 injection another set to take home along with vit d injection and 10. 000 vitD pills to take.

I waited a while had blood test and my ferritin got up to about 37, my B12 -220 and my vitD to 95.

So I went back to Poland got another iron infusion more B12 injection an waited. Got another test and my ferritin went to 70, b12 to 552.

I thought I was going to be ok but this is when my thyroid started acting up by the time I got my bloods done again my ferritin started depleting from 70 to 50 and still going down my B12 from 553 to 300. So this is where I'm now.

I take 50mg of iron bisglycinate

Vit b complex liposomal which has high end all vitB with 400 of folate.

I still take vit D k2 2000.

She also did a test for pernicious anemia which came negative bit I was reciving my injections so it would be negative

So why am I loosing my iron and B12 and can not stay at optimal levels along with my hair falling, headache's. My thyroid as u mentioned is not optimal. I'm really trying to function and stay positive and do what I can on my side but at this point I dnt even know what to ask for at the Gp appt.

Any suggestions would be wholeheartedly appreciated.

Thank you all and you guys Rock!

greygoose profile image
greygoose in reply to WED2012

When you are hypo, it reduces secretion of stomach acid. Low stomach acid means that you cannot digest food correctly, and therefore have difficulty absorbing nutrients. So, taking supplements is for life, not just until you get your levels up.

I take 50mg of iron bisglycinate

Do you take vit C with it to help with absorption?

Vit b complex liposomal which has high end all vitB with 400 of folate.

How much vit B does it have in it? And is it methylcobalamin or cyanocobalamin? Is the folate methylfolate or folic acid?

I still take vit D k2 2000.

Do you take magnesium with it, too? Vit D won't do much without magnesium.

Doctors know next to nothing about nutrients, so we're really on our own with this. But you'll get plenty of help with them on here. :)

WED2012 profile image
WED2012 in reply to greygoose

Thank you 😊 I also been completely gluten free for 5 years. I knew it could help me since I had digestive issues got upper Gi was negative but I was told gluten intolerant. I have not slipped for 5 years and it dis get better.Yes I take vit C 1000mg with my iron.

The B12 is methycobal 500ug and me

Methyl folate 400.

No I don't take magnesium but I will read about it since I also heard it helps with menopausal symptoms. I did not know VitD needs it.

Yes I feel so frustrated I been paying for my Iv iron b12 injections the private dr in Poland and she seems to think I'm A ok. I don't mind doing some things but I would like a plan at this point I don't know what to even ask, and I'm so upset about my hair. 😪 Do you think I should just let it be and supplement all this vit even though they keep going down quite fast? Should I ask to up my levothyroxine any higher? Or should I push for endo referral?

Thank you

greygoose profile image
greygoose in reply to WED2012

Being gluten intolerant has nothing to do with low stomach acid. They are two entirely different problems.

500 µg is not a lot of B12, you probably need double that. So, maybe consider taking a separate B12 supplement as well. A sub-lingual one would be better because it by-passes the stomach. Or a spray.

Magnesium is essential for life. SlowDragon posted this earlier and it's quite an eye-opener:

drmalcolmkendrick.org/categ...

And, if you take vit D without magnesium it will deplete what little magnesium you have.

You are probably losing your hair due to your low ferritin, rather than low thyroid hormones. Hair needs a lot of iron. But, what you need is some T3 added to your levo rather than an increase in levo. You would have to see an endo to get that.

WED2012 profile image
WED2012 in reply to greygoose

Ok great I will get some magnesium ASAP . A sublingual B12 ok can you recommend one please.

What do I do about the iron at this point do I take more? Or should I ask my gp to figure out why I deplit it so quick and do further testing?

So I was thinking about the T3 I see alot of posts about it but not fully understand the whole conversion thing. I will suggest her reffering me to endo. Is there any valid grounds I can present to my Gp so she actually do it. I did not see any Nice quidlines that I can relay on.

Thank you Greygoose

greygoose profile image
greygoose in reply to WED2012

Solgar is a good one. Or Jarrow.

I see alot of posts about it but not fully understand the whole conversion thing.

Well, the levo you are taking is the thyroid hormone T4. T4 is basically a storage hormone that doesn't do much until it is converted into the active hormone, T3. If you are converting well, the FT3 level will be just slightly lower in-range - percentage-wise - than the FT4. But, in your case, the gap between them is much too wide - Free T4 16.20 (9.01-19.05) 71.61%/FreeT3 4.10 (2.63-5.7) 47.88% - and this shows that you are a poor converter. Now, whether your doctor is capable of understanding that, I don't know. But that is your reason for wanting to see an endo and get T3 prescribed: you are a poor converter and your FT3 is too low.

WED2012 profile image
WED2012 in reply to greygoose

Ok I get it I will go tomorrow to see her and will try to explain I have booked double appt. Hopefully she can comprehend...I really appreciate all your help this gives me piece of mind and a plan since I dnt know enough about this you guys are life savers and more importantly it gives me strength. Thank you

greygoose profile image
greygoose in reply to WED2012

You're welcome. :)

SlowDragon profile image
SlowDragonAdministrator

Which brand of levothyroxine

Presumably you meant 125mcg daily

You were left under medicated for decades

Likely very poor vitamin levels

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

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

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.

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

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

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

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)

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

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

In mean time my hair is falling and it has Neen since last year I had corrected few vitamins issues and they are ok now. overall feeling is not to good.

Please add latest results

What vitamin supplements exactly are you taking

WED2012 profile image
WED2012 in reply to SlowDragon

Hi Thank you so much for your reply. Im on 100 micograms of Accord and 25 of Wockhardt

I was at the Tsh level 3.2 mark for years thinking this was ok. I did not had side effects except the cold hands and feet.

I have gp appt 2morrow and let me tell you my battle with my vitamis

Back in Sept 2022 my levels of vitamis were horrific which I think depleted my thyroid eventually.

VitD -31nmol(50-150)

B12 - 177ng/l (187-883)

Folate 3.9 ng (3.1- 20.5)

Ferritin 17ng (20- 204)

So as you can see I was really unwell all my gp did is prescription for iron and told me to det vitD and b12 at boots. I got scared and went to Poland to see a private Doctor when he seen my results he could not belive it so I got Iron infusion and set of b12 injection another set to take home along with vit d injection and 10. 000 vitD pills to take.

I waited a while had blood test and my ferritin got up to about 37, my B12 -220 and my vitD to 95.

So I went back to Poland got another iron infusion more B12 injection an waited. Got another test and my ferritin went to 70, b12 to 552.

I thought I was going to be ok but this is when my thyroid started acting up by the time I got my bloods done again my ferritin started depleting from 70 to 50 and still going down my B12 from 553 to 300. So this is where I'm now.

So Jan 2024

Tsh 1.34 (0.35 - 4.94)

Free T4 16.20 (9.01-19.05)

FreeT3 4.10 (2.63-5.7)

FERRITIN 53ng (20-204)

B12 320ng (207-883)

I take 50mg of iron bisglycinate

Vit b complex liposomal which has high end all vitB with 400 of folate.

I still take vit D k2 2000.

She also did a test for pernicious anemia which came negative bit I was reciving my injections so it would be negative

So why am I loosing my iron and B12 and can not stay at optimal levels along with my hair falling, headache's. My thyroid as u mentioned is not optimal should I push to see endo? I'm really trying to function and stay positive and do what I can on my side but at this point I dnt even know what to ask for at the Gp appt.

Any suggestions would be wholeheartedly appreciated.

Thank you all and you guys Rock!

SlowDragon profile image
SlowDragonAdministrator in reply to WED2012

Sept 2022 my levels of vitamis were horrific which I think depleted my thyroid eventually.

No it’s the other way around…..being hypothyroid because left on ludicrously low dose levothyroxine CAUSED low vitamin levels due to low stomach acid

Are you still getting B12 injections…..if not

You need a separate B12 as well as daily vitamin B complex

Once B12 gets over 500 you may be able to reduce or stop separate B12

If Vegetarian or vegan likely to need ongoing separate B12 few times a week

Highly effective B12 drops

natureprovides.com/products...

Or

B12 sublingual lozenges

uk.iherb.com/pr/jarrow-form...

cytoplan.co.uk/shop-by-prod...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate

healthunlocked.com/thyroidu...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

helvella.blogspot.com/p/hel...

WED2012 profile image
WED2012 in reply to SlowDragon

Ahh ok thank you for that I had no idea I just knew it was bad. I have not had it tested at least in the last 25 years. I don't know if I had it tested back then as it was in the States.

Yes when I test I dnt take my meds in the morning and I just drink water I have stopped biotin 10 days before I have learned this from all your posts., thank you for that.

I have injections at home from the doctor but i thought i can just take the vit B12 and unfortunately it went down. I was only taking B12 Liposomal vit B complex and it went down from 550 to 330 in 8 weeks.

Yes im strictly gluten free for the last 5 years I do eat dairy but try to avoid lactose.

SlowDragon profile image
SlowDragonAdministrator in reply to WED2012

Is your hypothyroidism autoimmune

Presumably it is

Have you ever had thyroid antibodies tested

FT4: 16.2 pmol/l (Range 9.01 - 19.05)

Ft4 71.61% through range

FT3: 4.1 pmol/l (Range 2.63 - 5.7)

Ft3 only 47.88% through range

Was test done as per guidelines…..last dose levothyroxine 24 hours before test

Are you on strictly gluten free diet and/or dairy free diet

WED2012 profile image
WED2012 in reply to SlowDragon

I dont know if its autoimmune one. Honestly has been so long when I got diagnosed. My gp did not checked recently. Should push for endo appt? Do I have any good grounds nice guidance etc to help me with T3 do you think I might need it?

Thank you

SlowDragon profile image
SlowDragonAdministrator in reply to WED2012

Work on improving B12 and ferritin

Lots of members have good results with Three arrows iron

Retest thyroid again in 2 months including thyroid antibodies

Then see if Ft3 is improving

WED2012 profile image
WED2012 in reply to SlowDragon

Thank you so much I highly apriciate all you advise. All the best.

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