peripheral thyroid resistance

[Liz118]

I am starting to think this is what is wrong with me. I am continuing to take high doses of T3 and some T4, and lab work shows I am hyperthyroid, but my symptoms are all in line with hypothyroidism. I think this means the thyroid isn't getting in to the cells-it stays in the blood, but my cells don't recognize the thyroid hormones. I see my doc next week, so maybe he will have an opinion. Does anyone else have this problem?

[RavingMad]

Liz,

Aww, thanks - yeah, well I try my hardest to be patient & positive. Lol. It's easier now that I'm recovering & feeling better after the hypo crash I had. Damn hard to feel positive when you're severely fatigued, depressed & look like an oompah loompah!

I've done some reading on gene mutation - couldn't quite get my head around it all, very interesting though. I'll send you a pm.

I'm convinced my dental problems are thyroid related. Apart from wearing a 'plate' to straighten my teeth & having 2 wisdom teeth removed, I never had any problems with my teeth/gums when I was young. Since spending the last few years being hyperT then hypoT, in the last 12 months I've had 3 fillings & gingivitis. Go figure!

Since I hypo crashed & my TSH soared - I've suffered from ailments I've never had before. I had high BP when I crashed (felt a 'whooshing' sensation in my head & could hear my heartbeat in my ears!!). Luckily this only lasted for about 2 months, it was freaking me out. 3 months on, I still get 'fibromyalgia like' pain in the R shoulder & constant ringing in the ears at night. The Dr thinks it's all thyroid related & should settle once I'm stabilized on meds. Hopefully the supp's will help as well. Fingers crossed. My TSHs on the way down & hopefully I'll find my 'sweet spot' where I feel really good. I'm guessing around 0.30 (borderline hyperT) - time will tell.  

Rach  : )

[Liz118]

Hi Rach
One more thing, you mentioned gum and teeth problems. I wonder if this could be contributing to systemic problems, if you have bacteria or something that is leeching into your system...I am trying to figure that stuff out too

[Liz118]

Hi Rach
You seem to be taking everything in stride, and I agree that patience is the key to treating this stuff. It takes a long time!
My problem is that when I take T4 it seems to actually block the T3's effectiveness. I know that sounds strange but its true. This is why when I raised the armour dose I became more and more hypo. I don't understand what is going on in my body as far as conversion issues but I have been reading a lot of articles which indicate that there are gene mutations and amino acid conversion problems which could contribute to resistance at the cellular level. This makes me worry that I will not every find out what is actually going on because it is beyond what medical tests can diagnose. Arg! I am taking a little bit of levo right now and I feel like I need more cytomel (T3) than I did before.

[RavingMad]

Liz,

Yes, the last 5-6 years have been a bit of a struggle, but I've become such a strong person because of it - what dosen't kill you makes you stronger!

Well, just a little update - I found the 60mcg T3 (Tertroxin - immediate release) too strong - I couldn't sleep & felt exhausted after 3 days, so cut it back down to 40mcg. I had bloods done 2 weeks ago & saw my 'thyroid' GP last week - (I had tests done in October, so these are 'follw ups'). My zinc has increased & copper has decreased somewhat. My iron/ferritin levels are good. My TSH has decreased from 5.58 to 2.14, my FT3 is steady at 3.3. Since I've been on the T3 (Tertroxin) only, my FT4 has gone from 16 to 6.6 & now 5.1. So, now I'm on a combo dose of 50mcg T4 & 40mcg T3, to increase my FT4. My compounding chemist dose of vitamins/minerals has been halved but he's added other nutrients (a colloidal mineral solution). The progesterone cream is a godsend - in 3 months my cycle has gone from 'all the time' to 'once a month'.

I'm still battling with weight loss, hair thinning & gum/teeth problems - but I'm hoping once my levels & med dose are optimised these will improve. Sometimes I get impatient, but I have to remember that my thyroid condition developed over a number of years, so it'll take a while for my body to heal itself.

Yes, I agree, if the sustained release T3 dosen't seem to be helping then maybe try the immediate release T3 or even a T3/T4 combo. It's tricky & time consuming, but once you've ruled out all other possible 'conversion problems', then it's just a matter of getting your meds, doses and/or supplements fine tuned. Keep in touch, let me know how you're going.

Rach  : )

[Liz118]

Hi Rach
Wow you have really been through hell! You do sound like a tough person and I am so glad that you and your daughter have both come out of that situation as well as possible.
I have not had kids but I think if I did the pregnancy would cause problems for me. I think a lot of time pregnancy can bring on autoimmune disorders in those who are vulnerable, because the body changes so much. I am really sensitive to hormone changes, too. Its so difficult to figure out which area to treat first if everything is off (sex hormones, thyroid, adrenal,etc).
I am pretty much resigned to switching back to cytomel (immediate release T3) instead of the sustained release stuff. It just doesn't seem to work for me.
I wish there was more information on thyroid resistance. It still seems like so much is not known.
Keep me updated on your situation!
Be well

[RavingMad]

I've noticed with the T3 (Tertroxin) there seems to be a pattern with me - I started off on 20mcgs, had the sweats for 1-2 weeks then felt great, about 6 weeks later I felt hypo & increased my dose to 40mcgs. Same thing happened, got the sweats, then felt great for a while & 6-8 weeks later started feeling hypo again. I've just increased my dose again by another 20mcgs.

'Sub' ing is great - it's enters the bloodstream directly from the gums/under the tongue, as it bypasses the stomach, I eat 5 mins later. The T3 should (???? lol) go directly to the cells. I feel 'awake' & full of energy, ready to tackle the day - which includes early morning shift aged care nursing & being a sole mum to a 4 year old!!! Lol. I lead a busy life, have a physically demanding job & cope with everything at home on my own, plus I've just started exercising again & we've experienced one of the hottest summers on record down here - so not sure if the 'sweats' are medication related or lifestyle/weather related, could be a mixture of both.

One things' for sure though, T3 has saved my life. My depression has lifted, the weight is slowly coming off, not that I'm fat - but being 60kgs is alot heavier than my usual 'hyperT' 47kgs - so in my skewed head, I still feel 'fat'. I will always have 'issues'. That's another story!! Lol.

In answering your question about 'do I feel better or worse since the TT' - well, it's complicated. Lol. I have felt 'not quite right' since about 2003. Looking back, I think that's when I may have gone hyperT. I was in an abusive relationship with alot of dramas &  constant stress, I was dieting & holding down a 5 day a week aged care job. I lived on coffee, cigarettes & adrenaline, dabbling in 'other things' to calm me down or perk me up. I was anxious, highly strung & never slept. I started losing alot of weight,  plummeting to 47kgs. Everyone, including myself, put it down to stress & lifestyle. My adrenals would've been in 'crisis mode', I'm sure. I also had period problems & was on the same pill I'd been on for the last 10 years.

Then I found out I was pregnant. 20 weeks & 5 days to be exact. I quit cigarettes & my 'other vices'. I was still having periods with breakthrough bleeding, so had an ultrasound & found out I was having a girl. She was 'small for dates' & I was a size 6 & weighed 50kgs, quite underweight. At 26 weeks, I had an internal ultrasound & found out that my cervix was open, threatening to go into early labour. I was rushed to a major hospital by ambulance, an hour from home. I lied in bed for a week & didn't move. I had tests done & was poked & proded by specialists, professors, nurses & doctors. The only thing they could tell me, was that the bleeding wasn't coming from the umbilical cord. They couldn't explain where the blood was coming from though, why my daughter was small for dates or why my cervix was open. A week later, I had another ultrasound, my cervix had shut back up & even though I was still bleeding - I was allowed home on one condition - that I reduce stress, no heavy housework/lifting & go on immediate maternity leave. I left my ex that week & moved in with my mum. I went into labour at 37 weeks & 5 days, the cord was around my daughters' neck & she was in foetal distress, so I had an emerg c section. She weighed 4lb 14ou or 2180gr & was an IUGR (inter uterine growth retardation) baby - small for dates & was in the 'special care nursery' for a few days. I unfortunately haemmeraghed (sp?) in the wound the night I had her & 2 days later, had more surgery - felt better the next day & resumed breastfeeding - which went really well. We went home on day 9. I had put on 10kgs throughout the pregnancy, all baby - and had lost it all by the time I left hospital. My daughter started solids at 4 months & I breastfed till my milk dried up at 6 months - she flourished, (she is now 4.5, tall, healthy & as strong as an ox). Lol.

In the mean time, I went back to work full time, got a place of my own, began part time studies & coped with a toddler as a single mum. I was sleep deprived, constantly exhausted & teetered on the edge of a meltdown. But I coped. I had to. Then I got diagnosed with a multi toxic nodular goitre/hyperT when my daughter was 2.5. This, in my opinion had been brewing under the surface for a few years, hidden by all the other stresses I'd been through. I had the TT a few months later & have been hypoT ever since.  

I've done reasearch on hyperT pregnancies & theres' a link to IUGR babies, pregnancy & birth complications. Personally, I think I became oestrogen dominant when my periods started mucking up around 20002/03 & then hyperT soon emerged. In the midst of all this, somehow I managed to fall pregnant on the pill. Both conditions went undiagnosed & untreated.

So, as much as I've had a hard time since the TT & being hypoT, undiagnosed hyperT caused havoc as well. I'm really looking forward to feeling 'good' again. I'm tough as nails, but my patience is wearing thin. Sometimes I just want to get off this ride, I don't want to play anymore. Lol.

My daughter is a blessing, she was meant to be. I'm extremely lucky that we both survived. I count my lucky stars each & every day.

Rach  : )  

[Liz118]

Thanks so much Rach
I will check out the pm. I have just gone off of the T4 entirely, also. I am now at almost 40 mcg of T3, too, and I still feel hypo. I may have to go back to cytomel (immediate release T3) because I am still not sure that the sustained release is working for me. I can't stand the sweating on the cytomel, though. Arg.
I still have my thyroid and this is still happening, which I feel is strange. Do you feel that getting the thyroid out has made problems worse or just the same or better for you?
I am getting all of my amalgam fillings out and checking out all of my teeth to see if there is something going on there. I have no other ideas because I have checked everything else. I guess I will just keep trying to raise the dose of the T3 and see if that works eventually.
It is really helpful to read your story. Thanks

[RavingMad]

Yep, maybe we just have to slowly 'up' our T3 until we feel better? I'm not sure what the 'usual' dose is, but I'm on 40mcgs a day. I'm starting to feel a bit hypo again, so I trialled adding another 20mcgs the last few days & I can feel the difference immediately. Will check this out with my GP when I see him next week.

In answering your question, yes I'm on T3 only (Tertroxin- immediate release), weaned off the T4 as I started increasing the Natural Thyroid Hormone (Aussie Armour) late last year. Felt dreadful on the T4. Felt dreadful on the NTH after a few weeks too. T3's the only med I feel 'close to normal' on. It's been a long 2 years. Lol.  

I have read stories where people with RT3 problems took very high doses of T3 to clear their receptors. I had my RT3 tested & mine was 251 (140-540) - so I was within the normal range. My conversion probs are directly linked to my micronutrient imbalances, oestrogen dominance & gluten sensitivity. I had bloodwork done yesterday to re check my zinc/copper levels, (plus iron levels & TSH/FT3/FT4) - and get the results next week.

Yes, the progesterone cream has made a HUGE difference, in only 3 months. I've gone from having a period for 3 weeks out of 4 (this had gone on for years & years, undiagnosed) to now having a period for a week - but my cycle still needs a bit of fine tuning - early days yet. I'm not complaining though, I'm over the moon actually! Lol.

Adrenal probs can affect your thyroid function, meds & conversion. Stick with the DHEA, Cortef (Hydrocortisone?) & your supps if you can until your adrenals sort themselves out. Hang in there. I've found some great info, so I've sent you a p.m.

Rach  : )

[Liz118]

Hi rach
Your story does sound like mine. When I went on Naturethroid (armour) I kept upping the dose and the more I raised, the more hypo I felt. Sometimes I wonder if taking the T4 and T3 together at the same time may have been the problem, but probably not.
Sometimes I feel like the T4 actually blocks the T3 from working because when I took cytomel alone it had a much stronger effect than the T3 in the armour did.
Are you off of T4 entirely? Did you have your RT3 tested, too? I did all the other tests-I am definitely adrenally fatigued and I am taking cortef, dhea, and loads of supplements. I had vit D deficiency, too but my levels are back up again. How are you doing on the progesterone? I can't tolerate progesterone because it makes me depressed. I can barely tolerate dhea for the same reason but my levels are really low.
I have read that people who have a problem like this need really high doses of T3 to get going. Its so hard to know what causes this problem!
Is tertroxin immediate release or sustained release?
I hope we find the solution!

[RavingMad]

SNAP!!!! I've got the same problem as you. I've been diagnosed with a T4/T3 conversion problem at cellular/peripheral level, due to a zinc/copper imbalance, a gluten sensitivity & a suspected oestrogen dominance. I'm also mildly deficient in Vit D.

In Oct 06, I was diagnosed hyperT - with a small 'hot' toxic nodule & a large 'cold' atypical nodule. I had my TT in Jan 07 & commenced T4. Spent the next 2 years feeling & looking severely hypoT, had all the nasty symptoms - the 20kg weightgain, hair loss, constipation, depression/mood swings, severe body fluid retention & puffy face/eyes made my life miserable. Upped my T4 to 200mcgs, made no difference. My TSH was anywhere from very,very low to borderline normal/high & my FT3/FT4 were usually within 'normal' limits. No one would listen & I got shoved from Dr to Dr (GPs, Endo, Gynae/Obs).  Maybe I had a problem with T4?


Did lots of research & found out about Armour/Natural Thyroid Hormone. In Oct last year, I found a Dr who prescribed it & travelled a long way to see her, she was rude & very expensive - but atleast I got the scripts & pathology request forms I needed. Started on the NTH & weaned off the T4. In Dec, I changed Drs, found another Dr who prescribed NTH & who was closer to home. All was good till about week 6 when I hit 120mgs - I hypo crashed & felt more dreadful than ever. I really thought I was going to die.

My new Dr suspected a T4/T3 conversion problem (zinc/copper imbalance, Caeliac disease, oestrogen dominance???) & ran a bunch of tests. I had 6 vials of blood taken. My test results revealed a high copper/low zinc level, Vit D deficiency, gluten 'sensitivity' - ( though not intolerant/Caeliacs) & he suspects an oestrogen dominance due to my long standing, on going period problems (can't be tested until I develop a 'regular' cycle). He explained that all these problems can impair the body's ability to convert T4/T3.

The Dr prescribed a strong dose of compounded vitamins/minerals plus natural progesterone cream. I'm also taking selenium, Vit B complex & using Celtic Sea Salt to help with fluid retention. I commenced 20mcg T3 (Tertroxin) immediately & came off NTH. A month later I upped it to 40mcg. I think it still needs tweaking, as I get an 'arvo slump' (so will discuss adding an extra 20mcg mid afternoon, when I see him next week).

After recovering from the Dec/Jan hypo crash - I'm slowly improving, though some days it feels like 2 steps forward, 4 steps backwards. Just glad I listened to my body & trusted my instincts. I knew 1.5 years ago 'things weren't right'. It may take a while till I'm feeling like the old me, but atleast I can see a light at the end of the tunnel.

Hope this helps - maybe ask your Dr to test you for: adrenal function/cortisol levels, pituitary function, female sex hormones & imbalances, insulin/insulin resistance, iron studies, micronutrient levels- vitamin/mineral imbalances, Coeliacs disease, liver function, kidney function, reverse T3, TSH, FT3, FT4.    

Rach  :  )