Could T3 be my last hope of being well, even if... - Thyroid UK

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Could T3 be my last hope of being well, even if blood levels are 'normal'?

12 Replies

Hi everyone,

I’m 52. I’ve been taking thyroxine for 20 years after being diagnosed with autoimmune hypothyroidism. I also discovered I'd gone through an early menopause at the same time. I’ve never been well the whole time since then.

I have all the classic chronic hypo symptoms: fatigue, muscle aches, pains & stiffness, depression, swollen thyroid, signs of chronic infection, swollen lymphs, blocked ears, sore throat, chest pains, bloating,

I’ve was on HRT for a few years, it made no difference to these symptoms. I tried a gluten free diet for several months and felt no better. For 8 years I’ve been on sertraline for depression/PTSD and feel a lot better in that respect. I’ve tried every painkiller going - I’m currently on pregabalin but I don't think it makes any difference to the pain.

I’m on 100mc thyroxine and currently going through another flair up lasting months - once again I've approached my GP and I’m waiting for another endo consultancy (NHS first then I’ll go private is needed.)

I’ve also asked for another ultrasound. In 2012 the US showed my lymphs were swollen but nothing unexpected about my thyroid. I also saw a private endo then, she said as my bloods were normal my symptoms couldn’t be thyroid related and she wouldn’t discuss T3. I then saw a rheumatologist who tested everything but found nothing wrong with me. He suggested peripheral neuropathy or central nervous system sensitivity.

So..

This time when I see a different endo I want to ask for T3.

The question is if my TSH T4 T3 and vitamin/mineral levels come back normal, why am I so ill? My GP yesterday shrugged and said it's 'a mystery'. This isn't the bloody 17th century! Can T3 make any difference?

Here are my blood results from last week plus my results from the last 10 years. (I asked for full Thyroid evaluation TSH, FT4, TT4, FT3 and thyroid antibodies but my GP says she could only order TSH. I’ve been with her 20 years and she’s very supportive but limited. I’ve had T4 / T3 done before but never antibodies - yet.)

Full blood count came back normal including

vitamin D 81 (adequate)

folate 13.97 (range 2.50-19.50ug/L)

ferritin 46.9 (range 33-400ug/L post menopause)

B12 904.3 (range 180.0-900 ng/L)

TSH

In 2018 - 1.69 (range 0.27-4.20)

In 2017 - 0.41.

In 2016- 1.0.

In 2015 - 0.24 and again 0.20

In 2012- 1.6.

In 2006- 9.5

In 2003- 3.4

Free T4

In 2015 - 19.5 (range 12.-22.)

in 2015 - 22.3

In 2008- 19.6.

In 2007 - 19.6.

In 2006 17.4 (range 10.0 - 24.0)

Free T3

In 2008 - 4.7.

In 2007 - 4.7 (range 2.8-7.2 pmol/L)

Any help will be much appreciated.

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12 Replies
SeasideSusie profile image
SeasideSusieRemembering

FlamingHazel

You will only know if T3 can help if you have FT4 and FT3 tested at the same time as TSH. If your GP can't get this done, maybe you can do what hundreds of us here do and that is a private test with one of the recommended labs.

Medichecks

Blue Horizon

You can get bundles with a full thyroid panel (including antibodies) plus vitamins and minerals, or just the full thyroid bundle. See which is the best value at the time of ordering.

Full thyroid panel:

medichecks.com/thyroid-func... or

bluehorizonmedicals.co.uk/t...

Full thyroid panel plus vitamins and minerals:

medichecks.com/thyroid-func... or

bluehorizonmedicals.co.uk/t...

The vitamin and mineral results posted above:

vitamin D 81 (adequate) (32.5ng/ml)

The Vit D Council recommends a level of 125nmol/L (50ng/ml)

vitamindcouncil.org/for-hea...

and for your current level they suggest supplementing at 2,500iu D3 daily

vitamindcouncil.org/i-teste...

They also recommend

"On days that individuals do not sunbathe, the Vitamin D Council recommends the following daily maintenance doses:

Adults: 5,000 IU (including pregnant and breastfeeding mothers)"

Retest after 3 months and when you've reached the recommended level then you'll need a maintenance dose which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with City Assays vitamindtest.org.uk/

There are important cofactors needed when taking D3 as recommended by the Vit D Council -

vitamindcouncil.org/about-v...

D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.

Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.

Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds

naturalnews.com/046401_magn...

Check out the other cofactors too (some of which can be obtained from food).

folate 13.97 (range 2.50-19.50ug/L)

This is good, it should be at least half way through range.

B12 904.3 (range 180.0-900 ng/L)

This is good.

ferritin 46.9 (range 33-400ug/L post menopause)

This is low. For thyroid hormone to work (that's our own as well as replacement hormone) it's said that ferritin needs to be at least 70, preferably half way through range. You can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, also liver pate, black pudding, and including lots of iron rich foods in your diet apjcn.nhri.org.tw/server/in...

in reply to SeasideSusie

Thank you, plenty to consider.

silverfox7 profile image
silverfox7

Just to say it makes a huge difference getting the vits etc up where they should be. I found I had a conversion issue which you need to compare your T4 with T3 and I managed to reverse it. Many doctors don't realise it is important. My own told me to stop supplements, I didn't! But a few months ago she suggested testing cholesterol, never had one done before, then she said what else would I like testing so went with the 4 that help our thyroid to work better. Plus can I have this done routinely each year!

Quirkycrow33 profile image
Quirkycrow33

Have you been tested for fibromyalgia ?

Thank you yes you have to be mentally very resilient. I have considered every single other option but came back to hypothyroidism as the root cause. I did see a rheumatologist and he did the same as with you, eliminated everything and concluded it was a kind of fibromyalgia and chronic fatigue. I went on an NHS chronic pain management course to help accept permanent pain, which was really good. However - I’m trying to see if these conditions are caused by hypothyroidism. They get worse when the thyroid flares up. Giving me flu like symptoms for months on end.

I am looking at my antidepressant medication Sertraline and thinking of changing it - because it can cause similar symptoms . My symptoms are all pre existing but sertraline could be making it worse.

I’m sorry to hear about what you’ve been through and going through. But it takes great strength to do what you’re doing. Dealing with chronic pain ditto. There’s no definite answers ! It’s good to know none of us are alone. Good luck to you too.

Timewas03 profile image
Timewas03

Hi FlamingHazel, I have been reading a lot about some people experience. Myself for example I removed half of my thyroid due to a lump, thankfullly it was benign.

My doctor asked me a blood test TSH in four weeks after the surgery, I also asked him T3, and T4, otherwise I don't think he would ask.

I am also on HRT for a long time due to also early menopause due to endometriosis.

What I have already read is, apparently HRT interfere with thyroid medication, specially the pills ones, it is said that the HRT in patches are the best, as they don't bind the thyroid meds to get to the system properly.

I am more than hope my other half will work as normal, but by now I have to wait and see.

Another thing that I also heard is, if your TSH is in the normal range it doesn't mean you are fine, apparently it has to be close to the highest mark.

Try to investigate more, as I have been doing, and talk with your gynocologist about the HRT in patches, as those don't pass through your liver they are absorb through your skin.

Hope you find a solution, by the way, I take HRT -(estrogen) in patches and progesterone through a mirena coil, which again it goes straight to the womb not through your liver.

Regards,

TimeWas03xx

in reply to Timewas03

Thank you very much. Yes I went on HRT patches, they are good and eventually I stopped taking HRT all together. I felt I no longer needed it after years on it. Sadly though I don’t feel that HRT had any effect on my pain symptoms. It didn’t effect my thyroid levels either.

I've had an underactive thyroid for about 5 years and got along just great on 75 mcgs of levothyroxine until last fall.

Last fall I began feeling absolutely horrible with extreme fatigue weakness head pressure constant muscle aches and pains- some days worse than others but progressing. My Endo told me it was not my thyroid because my numbers were in range.

So this last year out of sheer desperation I started jumping from Doctor to doctor. One doctor actually had me add 20 mcg of T3 to the 75 mcg of t4 in July. By August I was so sick I could barely make it to work. By the end of August I finally found a Doctor Who said I needed to cut back medicine -- she thought that because I went gluten-free the year before that I needed LESS medicine and not more.

The entire time my blood results all came back fairly normal. The one thing that made this last doctor suggest I reduce medicine was my pulse. It was quite a bit higher the normal.

So I started by reducing the T3 by 5mcg and within 4 days felt an unbelievable difference. That was in early September. It has been two steps forward and one step back since then very very long recovery from being overmedicated. I have since stepped down on medicine and now I am taking only 50 MCG of Levothyroxine and and finally feeling normal again.

We have come to the conclusion that I needed to reduce medicine when I found out I was so gluten intolerant and went gluten-free a year ago. I have truly suffered this last year and know what you feel like. I had so many tests run this year looking for other things that it did just boil down to my thyroid and who would have known I needed to reduce meds and not increase.

Keep looking! It sounds like you just need to get the right meds working for you!! Good luck it is such a struggle!

in reply to

Thank you. Means a lot .

Musepux profile image
Musepux

It happens to some people that the body does not respond to Levothyroxine the way it used to. I am one of them.

After six years on 75mg Levothyroxine - Synthroid (BTW ALWAYS take the brand) I started getting hypo symptoms again - lightheadedness, fatigue, I was "not myself".

Increased dosage, added T3, never got it right.

The crazy thing is that bloodwork was fine.

I went to another doctor who was more into natural hormone replacements. He prescribed NatureThroid - and within three days the symptoms were gone. I have other friends who had to switch to Armour or NatureThroid. Similar to Synthroid, which was recalled several times, those manufacturers seem to have inconsistencies too. Sometimes the manufacturers change ingredients or get them from somewhere else. My recent batch of NatureThroid feels different, less effective. Another brand is NP Throid.

It might not be easy to ask your doctor to take another route than Levo, but it is definitely worth a shot. There is a website dedicated to this topic called stopthethyroidmadness.com.

silverfox7 profile image
silverfox7

This forum if you don't already know is run by Thyroid U.K. It might be worth looking at their site. I was just wondering if you were doing something wrong through no fault of your own without realising it there are some do's and don'ts on the site and it might well be worth a read. Something might give you an inkling of what might be the problem.

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