Should I switch to NDT from levo?

[Juliet_22]

Hi beautiful people,

I've posted a number of posts here related to my heart pals and HBP with a healthy heart (I've been to see cardiologist). I'm even so grateful for all your support and this amazing forum.

My nutrients (ferritin, iron panel, B12, folate, D) (also CRP, blood sugar) are at "ideal ranges", I know your recommendations here and I've posted my blood test results before.

I do have Hashi, and my TPO is a bit raised, but it was at that level, or even higher before with no issues re heart rate/BP. TPO: 195 (<34)

I've always kept active, my weight is healthy, I'm on a very healthy gluten/dairy/sugar/junk food free diet, eat healthy carbs, don't restrict calories, meditate, do deep breathing, sleep well, manage stress, do daily walks and move, seem to be doing all the right things. I take all the necessary supplements - D, B12, zinc, selenium, etc.

I shared these deeds before, but since this is a new post, I will share them again.

After my TSH jumped to 6.6 back last autumn, we increased the meds.

However, even since trying to increase my levo from 75 mcg to 100 mcg months ago (and even trying to alternate in between), my challenges had begun and my life had changed so much.

After being on 100 mcg for a few weeks, I started to have HBP and high pulse, for the first time in my whole life. From there, I've tried so many things.

My latest TSH is 4.9, so it has improved from 6.6 back 3 months ago.

My T3 and T4 has improved too.

My T3 back in mid-Fed was at 33% of the range, I know it should ideally be 50%+, but I've had it at 30%-ish range before with no issues - good energy, productive, sleep well.

T4 is at 40% of the range currently, so I seem to convert T4 into T3 ok.

My saliva cortisol is elevated, however I believe it's due to thyroid issues.

8am: 25.1nmol/L (high) < 20.3

12noon: 9.9 nmol/L (high) 1.6 - 5.6

4pm: 5.1 nmol/L (normal, but should be lower) < 6.94

10pm: 4.9 nmol/L (normal, but should be lower) < 7.56

I've been trying to do all kinds of things:

* Reduce to 88 mcg (still symptoms)

* Reduce to 75 mcg (better mentally, feel more like myself, but felt hypo before on it, perhaps I should try it again as the weather is getting warmer and I always do better on less meds when it's warmer)

* Take synthetic T3 - slow release, fast release, half 2.5mcg, 4am, 7am, with breakfast, then with lunch - but the T3 experiment had lead to more heart palps, HBP and a lot of anxiety. Also, feeling spaced out, like it's not even me anymore ...

* Alternate between 75 and 88 mcg (doing it now, but another episode of HBP and high pulse last night and a more severe one)

* Split the dose am and PM

* Take Holy basil, hawthorn extract, calming herbs, homeopathy, etc.

* Take beta-blockers, which crash me in the following 2-3 days to a point where I can't do anything

* Saw 2 private docs - one said NDT is the way, the other also said the same, but after hearing my T3 story, we agreed to alternate between 75/88 for now on levo due to my past reaction to T3.

But nothing has worked so far.

Yes, my TSH is a bit high and my Ts could be higher. But it's not dramatic. I had TSH even higher before and Ts lower without any heart pals/BP/high pulse.

My adrenals should be better as well, but from seeing what other people post, my situation is not as bad.

My energy levels are not bad at all, I have the desire to exercise every day.

I take lactose/mannitol free levo.

My symptoms are HBP and elevated pulse at times that is a scary experience.

Last night with the pulse of 130 was very concerning, my BP went up to 140/95, it felt like my heart was going to jump out of me. That was on 88 mcg taken that day. My body felt hot (but normal temperature of 36.9 C, though mine is usually 36.6), I had frequent bowl movements (like all the time), and my body was shaking. Hyper symptoms, right?

I did 2 days on 75 and 1 day on 88 and then the symptoms had started. But it was a stressful day due to family events and I'm not taking stress well atm at all (anyone found a solution to that please?)

I've already been to A&E multiple times and each time it's the same - they do bloods, everything looks fine, ECG is good, they let me go home. Sitting in A&E for 8-18 hours is not a lot of fun when you're kept being told the same thing each time.

BP can be normal and healthy for days and then BIG bang, it rises, pulse rises, anxiety rises, I have to breathe for hours to help it go down (or take a little bit of beta blocker if it gets unmanageable for me, but only did it 4 times in 4 months) and then it goes down.

Again, all started with a dose increase and since then it's been a rollercoaster.

So I keep on wondering - shall I try NDT instead?

I have hesitance about NDT, I have to say based on my T3 reaction before. Also, because I've read a lot of posts here - some people do great on it and it's a life saver for them, and other people don't, they get sick and go back to levo.

Also, because we travel often and T4 is so easy for me to get hold of, not the case with NDT.

Also, because there is a school of thought that suggests NDT is not suitable for Hashimoto's patients as this AI disease attacks thyroid gland and your medication is pig thyroid gland and could be triggering your immune system further. Not sure if it's true though.

Could NDT work better considering my past reaction to synthetic T3, the fact that T3 is more powerful, and generally reaction to dose changes/increases ... or is it the case that you just don't know unless you try?

Thank you for reading this and I would really appreciate your thoughts and insights.

[arTistapple]

Julia_T as you may be aware I am watching you closely (not stalking) because what you are going through is so similar in both symptoms and timing. I have chosen to just try and back off changes because I could not stand the symptoms. You are ploughing on ahead. You are much braver than me. It’s a different kind of torture cutting back and playing a waiting game. It’s mostly coincidence I am sure: the similarities. But individualisation is coming up centre and clear now. Whatever my actual outcome is, it’s going to be some sort of a distillation of everyone else’s, I think. I am wondering about where to next? I can’t increase my levo and reintroduce T3 at the same time. It’s not recommended on the forum and I try to pay heed. I have had bad results doing both increases individually! No doubt I will get some idea from my next lot of results. For me NDT might have to be considered but I dare not jump about to that without fully satisfying myself that that, is what is left. It’s too difficult to get, supplies seem to be not altogether smooth running, it’s expensive (although that would not stop me - needs must and all that). Apologies most of my post is working through your decisions and seeing how they apply to myself. Very useful for me; not such a useful reply for you. I do not want to seem selfish but thank you for giving me the opportunity to look at my own strategy!

[Juliet_22 in reply to arTistapple]

Thank you so much for your reply and I am glad we can support each other. I think you are right, I have to back off further changes as well at this stage and see what else we can do with the options we have now. I learnt a lot from your reply, bless you and thank you!

[arTistapple in reply to Juliet_22]

And yet again learning so much from you!

[Jaydee1507 Administrator]

Last night with the pulse of 130 was very concerning, my BP went up to 140/95, it felt like my heart was going to jump out of me. That was on 88 mcg taken that day. My body felt hot (but normal temperature of 36.9 C, though mine is usually 36.6), I had frequent bowl movements (like all the time), and my body was shaking. Hyper symptoms, right?

No not necessarily. What time did you notice the high heart rate? What were you doing? Do you have a smart watch to keep an eye on heart rate? I do feel that this is an undermedication issue and you may need to go through it to come out the other side.

You've tried a few different things so far but it might be betetr to persevere on one path rather than diversifying again and starting from scratch. There's no guarantee that NDT would be any easier and would involve going to a lower still dose and working back up again. If it worked that would be great. If it didn't then you might be worse off.

[Juliet_22 in reply to Jaydee1507]

I totally agree with you, thank you, too many changes are not a good thing either. The HR was at night, after a shower I took. I should wear a smart watch, you're right!

[Jaydee1507 Administrator in reply to Juliet_22]

A high heart rate in itself isn't a bad thing. I can say that as I have a condition that regularly gives me high heart rates and actually I'm almost normalised to it by now. If you have had it checked out then try not to stress over it as that will make it worse. Better to do some breathing exercises and try and distract yourself.

dropitlikeitspots.com/deep-...

[Triciatextiles]

what symptoms did you have when your TSH rose to 6.6? Was the reason to increase your meds purely based on test results? I became intolerant to Levothyroxine pills and had all kinds of symptoms including high heart rate and atrial fibrillation as well as blood pressure, eventually I switched to Levothyroxine oral solution which can be prescribed by your doctor, some people do better on this meds.

[Juliet_22 in reply to Triciatextiles]

I had constipation (not a problem other-wise), feeling slow, struggling. Which liquid brand are you taking?

[Triciatextiles in reply to Juliet_22]

zentiva is my first choice as it has the least fillers but this hasn’t been available for a while so I am currently taking brillpharma.

[Dancer57]

Hi

I am quite new on here and my knowledge of the Thyroid and medication is little so cannot offer any advise but I can sympathise with you regarding the heart palpitations and bp increase.

I have been going through same thing myself since December, A&E visits, Cardiologist, bloods etc. My heart has been given the ok. I think I am under medicated and am seeing Endo next week. However, having the feeling your heart is about to burst out of your chest is indeed very very scary. I go for weeks feeling quite okay and then whoosh, heart starts racing and cannot stop shaking and trembling and lots of trips to the loo. This episode can go on and off for days and weeks. I have to say there is a pattern for me and that is it starts in the evening or late at night. Not sure why.

I hope you get sorted soon. Just wanted to say you are not alone in having these horrible symptoms.

[Juliet_22 in reply to Dancer57]

Gosh, this is so similar to you with all the symptoms! Mine start at night too. Have you tested your adrenals? What dose are you on and what are your thyroid levels?

[Dancer57]

Hi Julia_T

Been on a low dose Levo 37.5mcg since officially diagnosed back in 2018. I have always felt quite well on it but last 2 years TSH levels have started creeping up. Not high but going up the scale. High heart rate, rushing to loo, started in 2021, just couple of times and as I have IBS thought nothing of it.

In 2022 had a couple more but in December last year I didn't feel quite right and started to get very fast heart rate again completely out of the blue while just relaxing. Then I got a few more and ended up at the drs.

My heart rate was elevated and my bp went up to 158 which was really high for me as mine is either below 120 or not much higher. I was unwell for about 6 weeks in total. When it really went into overdrive was of a night time, almost as though it had set its own timer to go off!!! I tremble and shake uncontrollably, it is not pleasant. It feels like a rush of something going through your body is only way I can describe it. Sometimes I get feeling something is going to happen before it starts and then wham heart goes mad. When these episodes stop I go back to feeling normal as though nothing had happened!!!

Visits to A&E, ECGs, a private Cardiologist, numerous blood tests have shown nothing wrong. I am deficient in folate and taking supplement. I did a private blood test as after two requests to NHS Lab they refuse to test T3 or T4.

My private blood results in February were:-

TSH 1.68 (0.27 - 4.2) - Lowest ever been since taking Levo

FT4 17.6 (12-22)

FT3 3.7 (3.1-6.8)

TPO 139 (raised antibodies) - Never knew I was autoimmune until this result

I had another TSH test 2 weeks ago and it is now 0.82 that is on same med dosage. So TSH is nose diving, not that that is a Thyroid hormone but tells me someting going on.

The Cardio guy I saw suggested I have Cortisol level checked and my adrenal glands checked.He gave me a prescription of a few Bistoprolol tablets (pill in a pocket) to slow heart down if it really plays up so I don't have to keep going back to A&E.

Cortisol taken at 9am was in normal range. I did a 24hour urine collection for Metanephrines to check adrenals that was 2 weeks ago and I am still waiting for the results of that. Seeing private Endo next week.

I think it is worth getting Adrenals checked if you can, they are all connected to Thyroid as far as I know. My own GP would never have thought of checking Cortisol or Adrenals as long as you sitting somewhere in TSH reference range they not interested.

Must admit, as I am sure you are, I am fed up with the whole thing and as yet no one seems to have an answer which is very frustrating!!!

Sorry for length of reply!!!!!

[Juliet_22 in reply to Dancer57]

Thank you for sharing all this! I totally understand what you are going through. It sounds so similar to me. It has been 4 months of this for me now, so challenging! Cardiologist also checked my Metanephrines, came back healthy. I tested 9am cortisol - normal. But my adrenals saliva showed elevated on 2 samples. Your TSH is good, but your T3 is low.

Are you taking vitamin D, B12, etc?

[Dancer57]

I am 3 months into this roller coaster. Glad you got ok for your adrenals and cortisol. Have to say I have not done adrenal saliva test, perhaps that might be next step, assuming Metanephrines come back ok that is.

TSH good at moment but it is fluctuating quite a bit .

Yes T3 is low!! This could be part of problem, hoping Endo can shed some light on that.

No not taking any vitamins, my vit D is on low side but not deficient. Only taking Folic Acid as deficient. I am waiting to speak to Endo before taking anything.

Your situation sounds much more complicated with medication than mine is for sure. I do hope you get some answers and a resolution soon,

I'll post if I get get any updates.