Not tolerating NDT but worried doc has started me too on low dose of levo. Sorry, raft of questions.

[helbell]

Thought I'd get this post out before my brains go into complete meltdown..

This is further to my recent post about feeling hyper and hypo (but lab results show hypo) and difficulties/reaction staying on NDT. I went back to my doc, after self-treating for two years, because my blood sugar drops were increasing to an alarming degree. I was frightened and needed support and want to be able to work with him. He thought my hypoglycemic-like episodes were tied up with my thyroid, saying that it wasn't uncommon. I requested to go back on levo so we all knew who was doing what, as well as guessing I was no longer tolerating natural thyroid - adrenal investigation on way. I explained I was just about sustaining about 3/4 grain Nature Throid and he has has approached new treatment with a straight swap titrating me up from lower dose: 25 mcg levo with 8 follow up. I researched and found 25 mcg standard starting dose of a new course of hormone replacement for females over 60. I suppose I could push the follow up to six weeks.

What I am REALLY concerned about is that I am dropping as I go with so little replacement. I know the levo wont kick in for a week but wonder if it would have been wiser to start me on 50 or 75 mcg levo so I at least get to my current circulating levels faster rather than letting them slump further? Or would that mess up his baseline work up...or whatever it's called? Last night my temp dropped to 34 c and the decline into fibromyalgia dimension has started. I realize it will take a week before the levo has got up to level in bloodstream. But by eight weeks I think I will be on my knees...then another eight weeks on 50 mcg ....

Based on current levels, can I afford to ride with it while he drops me and starts again to get to a level he is satisfied with at which point I will request more replacement than the results he is happy with, with a clear conscience.

Or, when he has plateaued at a safe low (I suspect), I might add in a little t3. I'm also toying with just starting myself on 50 or 75 and keep stum which means I will always have to keep him in the dark. Or ask if he thinks, or, why he doesn't think, it would be reasonable to start me on a higher dose. I am confused about what would be safe in the face on my most probable adrenal issues, but I do need some thyroid hormone replacement ?

When my temp slumped last night, I freaked and sneaked about 3 mcg of t3 and warmed up nicely again...but Scooby snacks are going to mess up my t4 raise/storage regime, or will traces disappear?

Hope that makes sense. Comments or shared experiences gratefully received x

Last lab results from last Tues draw

July 19th

CRP 1.60 <5.0 mg/L

Ferritin 88.0 20 - 150 ug/L

TSH H 4.52 (0.27 - 4.20 IU/L

T4 Total 74.1 (64.5 - 142.0 nmol/L

Free T4 12.05 (12 - 22 pmol/L

Free T3 4.63 (3.1 - 6.8 pmol/L

Anti-Thyroidperoxidase abs H 175.4 <34 kIU/L

Anti-Thyroglobulin Abs H 168.7 <115 kU/L

Vitamin B12 H >1476

Serum Folate 23.12 10.4 - 42.4 nmol/L

My last lab results from last Tuesday's blood draw

[HEA72]

You poor thing hellbell, I too have had my meds adjusted due to not tolerating NDT and know how it feels to feel so all over the place and more hideously hypo.

For a start, the adrenal glands check will help you understand what's going on there. If they're out of balance, then they will be affecting your tolerance to the thyroid medication. So patience will be needed to address those whilst on a lower dose of meds, then once adrenal gland balance is under way, you should in theory be able to tolerate increasing your dose again.

You're bound to feel more hypo, as the 3/4 grain of NDT would have given you 29mcg of T4 and some additional T3 with it, so if you're only on 25mcg of Levo now, then yes your system will be struggling. Also your body maybe assimilating the synthetic differently to the natural meds, which maybe affecting your well being too? As I'm sure you know increasing the Levo won't give you a quick fix, because it takes so much longer than T3 to get into the system and do its work. Also I know it's tempting to increase it when feeling so s**t but Shaws sent me a really helpful analalogy of 'the sponge' effect. Ask her for it, it helps us stop that temptation of increasing too quickly.

We also don't know if you're converting T4 to T3 efficiently too. So are you taking adequate selenium, zinc and magnesium to help this process?

If you're really struggling now and have found taking some T3 helps lift you, why not speak to your doctor about this? They don't have to put up with the suffering we do whilst all this adjustment is taking place with meds. So we need to speak up when this kind of thing is creating a living nightmare each day. Otherwise they're oblivious to what we're going through. Maybe a combo of T4 Levo and T3 will work better for your body? Because you can adjust the ratios of T4/T3 to suit your needs rather than the set amounts in commercial brands of NDT. Do you think your doctor would consider this route?

Sending you a hug - tough isn't it.

[helbell in reply to HEA72]

Just reading your post has strengthened my resolve! It all makes sense. I will summon up the courage to talk to my gp about the additional bit of t3. I'm thinking, to maintain traceable control, I might take the same tiny dose every night for a couple of weeks and drop back down to go if any adverse effects. The rapid temp slump spooked me. I almost felt like my body was reacting to the withdrawal of ndt. Good luck for your issues too. Please let me/us know how you go with it. Hugs right back

Helen

PS...typing on a predictive text phone pad results in much pink panther speak.

[HEA72 in reply to helbell]

Well done you. It feels good doesn't it to start getting some clarity on things like this. That sounds sensible to take small amounts of the T3, so you can drop back if it proves too much. Saying that, give it a few days to settle into your system and you could maybe experiment and increase a tad more, just to see if you benefit a little bit more? Go with what you body is telling you. Agreed, it does sound like your body was responding to a withdrawl of the NDT. Good luck with your GP appointment, I hope you get an amiable response. x

[helbell in reply to HEA72]

Me too.

Would you mind telling me how are you tackling change and what were your intolerance symptoms, H ?

[HEA72 in reply to helbell]

Oh it's been so very tough helbell. There have been times now where I've seriously wanted to end it all, it's like how much more of this can I take? So not tackling it very well at times. I'm so very lucky to have a really good friendship with my children's father and he's been an absolute pillar of support. Without him around I probably wouldn't be here now.

So whilst the symptoms go on and I await my new T3 prescription to arrive, I have to take a day at a time. My children's father is on stand by to help out whenever I need it, which is so reassuring for me, because I'm sure as you know there are times when you simply can't cope on your own. I've had to put my work on pause until my energy is more stable, because it can crash so easily and also my mental health can change with it too - I hate the unpredictability of it. I'm self employed, so I'm able to mold work around me but I do fear losing clients by doing this but there's nothing more I can do presently. My children now understand my illness and are willing to help me to when I need it. I feel blessed to have such good hearts around me.

I have to now presently accept my energy is not going to improve until I'm on better medication, no matter how much rest I get. So I have to be disciplined and pace and not do too much on days I feel brighter, which is hard, because I just want to get on and 'live'. I find having something positive to focus on helps. I find I'm much more sensitive to stress and anything negative presently. So my body response to things guides me to what I need to feel more on an even keel.

My symptoms of intolerance were feeling toxic, like the most horrendous hangover: splitting headaches, nausea, body aches, feeling like a zombie, poor mental function, raised pulse - thumping heartbeat, loss of appetite, anxiety, and some hyperactivity when initially toxic then exaggerated fatigue after I'd cut down or stopped the med to allow the toxicity to dissipate. Phew what a list!!!

[helbell in reply to HEA72]

Gosh I can identify with everything you say! I am pleased to read you have love and support around you. Yes, stress is killer. Even when I am well medicated too much stress will bring on a crash. No kids alas, but I do watch over my mum and my husband will support when I'm on my knees...he understands the complete cease of activity when I crash. I am also self-employed and share the same concerns. And. like you, tend towards crash and burn...pacing is so hard when the energy is there. It's a raw guess but I think the energy we get from the natural and or t3 might be having an impact on adrenals if energy supply continually abused. When I crash, its pretty dramatic..hit a solid wall..boom. I don't think docs understand or believe. But there is some very good research and papers out there that acknowledge all of this. Even dentistry guidelines cover not stressing a thyroid diseased patient because our autonomic and central nervous systems are compromised.

You sound horribly under-replaced. Depression and crying are one of the first signs that I am going down, along with bad guts, poor balance and generally uncoordinated in head and body. I may have to leave my surgery as I am putting so much faith in this doc, he's a good doc but I fear he might be strictly mainstream re thyroid.

Just keep talking. Thank you xox

[Treepie]

Doctors start older folk on a low dose as the body needs to get used to levo,but given you were already on T4 and T3 your body should be used to it and 25mcg is too little. Your TSH needs to be about 1 or below. Your high antibodies show that you have Hashimotos.Going gluten free seems to help in most cases.

I think I would go back to GP in a couple of weeks for an increase.

[helbell in reply to Treepie]

Thanks Treepie. Yes, I think I have to. Tonight my stiff painful fingers have returned and my lower legs are swollen. I'm already wondering if I have made a bad choice by enlisting his help. I can barely believe it but I think they truly cannot see a connection with the the slew of symptoms.

[helbell]

Hi Girls,

thought I'd update. I upped my Levo dose from 25 to 50 mcg PDQ and three weeks on just had private lab test (I know it's premature) showing just in range on all three. Feeling absolute cr*p with symptoms returning. I don't know if I can bear this for another 5 weeks before GP raise yet I know there is no point for at least six weeks prior. Even worse, when they take bloods next week) there results will be in range and he wont raise...I am practically disabled at this level. Going to snoop around to see if it is possible to squeeze a raise in four weeks. Once I get past GP monitoring I will raise dose myself in tiny increments whilst investigating adrenal/cortisol. Having chronic blood sugar issues now and read many times low thyroid level can aggravate or cause; as well as tired adrenals. What a nightmare this disease, and it's companions are. x

TSH 4.16 0.27 - 4.20 IU/L

Free T4 14.36 12 - 22 pmol/L

Free T3 4.09 3.1 - 6.8 pmol/L