Help please, consistently low t4, low TSH & t3 finally optimal after self medicating, but feeling wretched, so tired

[Bbe4gem]

My Gp is at a loss & can't seem to help me, I've consistently had low t4 results, low TSH & t3 finally optimal after self medicating, but feeling wretched, so tired & my bone pain is awful!

[MaisieGray]

If you've been self-medicating with T3 or NDT you would expect your TSH and FT4 to be low; but without the actual results and their ranges it's not possible to make any meaningful comments.

[Jazzw]

Tell us more if you can - what are your latest results and on what dosage of thyroid hormone replacement?

The next thing to look at is levels of B12, Vit D, folate and iron. One or all of those tend to plummet when we’re not optimally treated - as you weren’t for a long time. So it’s likely that a deficiency (or several) are the culprit(s) for you feeling so unwell. Have you had any of those things tested?

[Bbe4gem in reply to Jazzw]

Hi Jazz thank you for your reply, I've got techno problems atm but I think I've posted my results in masies reply above 🤔

[Jazzw in reply to Bbe4gem]

Afraid I can’t see them, sorry Bbe4gem.

[Bbe4gem in reply to Jazzw]

Jazz can you see this,? So sorry, I'm using android & I'm not the best when it comes to technology!

Thyroid function test

Serum TSH level < 0.05 mu/L [0.4 - 5.5]

Outside reference range

Serum free T4 level 8.4 pmol/L [11.0 - 26.0]

Outside reference range

Has erratic compliance been excluded?

Consider an endocrine opinion.

Serum free triiodothyronine level 5.4 pmol/L [3.0 - 6.0]

[Jazzw in reply to Bbe4gem]

Yes So are you taking T3 or NDT? I can tell it’s one or the other - which? And how much? The TSH becomes irrelevant when you take any form of T3 - it has a tendency to suppress TSH but that doesn’t mean you’re over medicated (no matter what your doctor says) because your FT3 is still in range.

[Bbe4gem in reply to Jazzw]

Hi Jazz, I'm taking 100mg Levo & 37.5gm of Tiromel self sourced, I have a conversion problem & my t3 was below range for 2 years before self sourcing. I saw an endo at the time who confirmed I would benefit from adding t3 to my Levo, but was unable to prescribe due to cut backs, hence me self medicating

[Jazzw in reply to Bbe4gem]

Right. So - one last question - did you take your Levo/Liothyronine combo on the day of the test? Or did you stop taking it before hand? If so, how long before the test did you stop? I’m trying to work out why your FT4 is low, although it’s not uncommon for it to be low when you take it in combination with T3 - the body seems to dump what it doesn’t need when there’s plenty of T3 around.

And your FT3 is nicely up the range, which tends to suggest you are on about the right amount of T3.

That points to your remaining symptoms being due to low nutrients - iron, B12, folate, Vit D etc. Have you had them tested?

[Bbe4gem in reply to Jazzw]

I stopped taking my Levo 24 hours & my Tiromel at least 18 hrs prior to my blood test, I am coeliac, so gf... My vit D was 177 & b12 800 last test, although I was supplementing sublingual b12 at the time... Thank you Jazzw

[Bbe4gem in reply to Bbe4gem]

That should have said b12 was 855 & I stopped sublinguals approx 10weeks prior to blood test, sorry tired & bleary eyed, just on lunch break & spotted error 😔

[silverfox7]

Have just looked at your previous post where you looked more undermedicated than anything else. Asxotgers have said results are read differentlyvwhen taking any form of T3 and so TSH should be suppressed, FT4 can drop down and FT3 should be high in the range. It's a pity you didn't check on conversion issues before taking T3 as you can't check it now as results don't give you that option but you can look at VIT D, B12, folate and ferritin was these, when optimal, can reverse conversion issues so they should help your thyroid to work better for you and hopefully things, given time, will improve. Bone pain sounds like low Vit D so again addressing these issues should make you feel better. Lots of us have to take supplements but remember these need to build up so it can take time particularly if you are very low.

[Bbe4gem in reply to silverfox7]

Thank you Silver fox. I saw an endo just under 2 years ago who said my conversion was poor & told me that I would benefit from a trial of t3 but he was unable to prescribe due to the NHS cut backs, he recommended going private which I can't afford therefore I sought-after t t3 myself.

I had vit D checked 2 months ago and it came back at 177 & my B12 was 855 (no supplements) ferritin & folate were high too...

My bone pain is mainly in feet & shins & has been so much worse last 2 years. I'm seeing musculoskeletal physio soon as doctor has done all the tests he can & thinks this is either osteoarthritis or fibromyalgia, I have a bony extrusion on knuckle of thumb, so I can see why he may think that..

Thank you for your reply & advice, really appreciate any help ☺

[silverfox7 in reply to Bbe4gem]

Are you taking the co factors for Vit D? K2 and Magnesium. K2 takes the calcium out of your blood and puts it in your teeth and bones and the magnesium locks it in. Less chance then of getting kidney and gall stones and calcified muscles. Justcthought of that as you mentioned Osteoporosis!

[Bbe4gem in reply to silverfox7]

Hi Silverfox

I take a really good quality D3 supplement & also K2 MK7. I am struggling to find a magnesium that's easy to swallow, I have some citrate ones but they are like huge chalky bullets 😔 I'll do some more research tonight after work possibly..

Thanks so much for your advice as always..

[Happysmile]

I am not medically trained but have B12 deficiency and under active thyroid. If you have been supplementing B12 before the test it will give a false result. My understanding is that you need to be off it for approx 4 months before testing else it will just show what is floating around your system, not what is active in your cells. Was it a serum test or active B12? Also what was your folate and iron with ranges?

[Bbe4gem in reply to Happysmile]

Hi happysmile

Yes all was OK with iron etc. My B12 was a serum test & I'd been away from sublinguals for 10 weeks 🤔 but my previous test my levels were 232 & then 400 & I was supplementing then. I may have to flush my system & start over again with medichecks possibly.

Thank you so much for your help

[Happysmile in reply to Bbe4gem]

Good idea to retest once clear of supplements. If you do end up needing B12 and if it’s caused by an absorption problem, ie not diet, then I’d suggest you research injections versus sublingual or tablets. Also if you do end up needing B12 then remember folate levels need to be towards the top end of the range, as it is needed to activate B12. If you are interested, I found reading the book ‘Could it be B12?’ and the latest book by Martyn Hooper, of the pernicious anaemia society, very helpful. Also, the B12 site on here and some on FB. Again, I’m not medically trained but have learnt so much by researching B12 and thyroid myself. Hope you find the answers you need.

[Bbe4gem in reply to Happysmile]

Thank you happysmile.

I think I will do the medichecks test once I've been clear of supplements for 4 months. I will take a look at those recommendations you have given me also, sounds like a good starting point... Thank you so much for taking the time to try & help me.

[DippyDame]

You may be resistant to levo.

I changed (after about 20 years on levo-only treatment) to T4/T3 combo when test results indicated poor conversion but that made little difference.

Then had a thyroid genetic test which showed I had the impaired DIO2 gene inherited from both parents which research indicates results in very poor conversion.

It looked as if the T4 was not being adequately converted, and pooling with problematic consequences, so it had to go!

I now take T3-only (which I buy) and improvements to all the usual hypo symptoms are beginning.

It's now 4 months since I dropped T4, it can take several weeks to clear from the system, and I have very gradually been increasing my dose ...and altering when I take it.

I monitor my heart rate and temperature several times a day to help ensure I'm not overmedicated and currently take 50mcg at 4am and 37.5mcg at 4pm...I suspect I need a further increase but this must be done slowly (weeks apart) and low (5 or 6.25mcg mg depending on strength of tablet ie a quarter tablet).

I started to self medicate,when I became very ill, because my GP had only diagnoses of Fibromyalgia and CFS to offer. My health had been gradually deteriorating for about 40 years and I had numerous tests, scopes scans treatments etc which were no help. I had over the years suggested that my metabolism was impaired but that hit deaf ears! Turns out it was!

Desperate to feel better and despite brain fog and exhaustion I started to do some research, read widely and found this life charging forum - that was over a year ago!

There is no quick fix, though caution on my part may have resulted in a longer journey,. that I can't confirm.

It is also important that Vit B12, Vit D , Folate and Ferritin are at optimal levels - not just in range - these support conversion.

The next hurdle is the current difficulty in obtaining T3 so unless I can source further supplies I now have the worry that my health will start to deteriorate again....as many of us here are experiencing.

Madness doesn't cover the situation...we can only remain positive and keep going providing we can find the strength!

Approaches to those in high places who have the power to change thyroid disease treatment seem, for the most part, fruitless... which leaves us at the mercy of both political and financial (big pharma) clout.

Hopefully in my thyroid journey you will find something that may help you.

Good luck

DD

[Bbe4gem in reply to DippyDame]

Thank you dippy dame for your reply & advice, I will read all of your comment properly & digest info, as soon as I get home from work tonight...

I think I need Levo though because my low t4 occured at the same time my Gp reduced meds 🤔

I really appreciate your help