NDT...struggling a bit😔

[birkie]

So as some members will know I went private and got ndt through roseway clinic, I'm doing great gastric wise, but struggling in increasing my amount.

I started on 1/2 a grain on July 19th 2024 I've slowly been increasing since then and in December i crawled up to one and a quarter, then slowly started trying one and a half, at the end of January 2025... bloods on jan 21st 2025

T3.....4.2...RANGE..3.10...6.80]

T4....9.2...RANGE..11.00..22.00].... OUT OF RANGE

TSH..3.62..RANGE...30...4.50]

[this is on one and a quarter]

I found increasing to one and a half gave my some hype symptoms..sweating, fast heartbeat, jittery, tremor, very red flushed face, I dismissed it, as my primary hyperparathyroidism symptoms are similar, I then tried to add a bit more to the one and a half grains and I felt totally hyper, I decrease back to one and a quarter but still had some symptoms of hyper🤷‍♀️.

I'm sure I'm not over medicated as one and a quarter grains gave me the blood as above 👆.

I've tried 3 times now to increase from one and a quarter grains to one and a half then to add a bit more to the one and a half and everytime I've had a bad time with symptoms.

Anyone else had this problem with ndt?

I'm now fearing I can't increase the ndt any further , but one and a quarter isn't moving my T4 into range 🤦‍♀️

[SlowDragon Ambassador]

are you splitting the dose

As 1 grain in morning and half a grain mid afternoon

When did you last test vitamin D, folate, B12 and ferritin levels

[birkie in reply to SlowDragon]

Hi slowdragon ❤️

Splitting it 3 times 8am, 1.30pm, 4.30pm I tried one whole grain but felt hyper so went back to 3 splits.

My b12 is 362 I know that's not good but I struggled on b12 spray and tablets 🤮 so started the patches are 2 months ago [ don't feel any difference]

Vitamin d is deficient at 32 so....because my parathyroid went over range GP put me on loading dose of vitamin D...and I felt awful and hey presto it's raised my calcium AGAIN🤦‍♀️ as it always dose🤮 so had to come off it.

GP says everything is OK with the rest of my bloods...yeah right!!

I've asked for b12 injections and we're refused point blank

I use spray magnesium, as again the tablets gave me gastric issues and I don't really want to upset my stomach or bowles when taking the NDT .

Obviously you know I'm under a parathyroid surgeon [ she's contacting me on 26 March to discuss my condition , my last set of bloods showed calcium at the very top and pth at the very top, not a good relationship for both.

But I was pondering if this batch of ndt is the same as my last🤷‍♀️

And the reason is after my 8am dose I've been getting acid wash back and a burning sensation in my stomach with a bad pain...now I've put that down to my calcium being to high for me, but it just might be this batch...don't really know as I've had no gastric issues since starting ndt🤔

[SlowDragon Ambassador in reply to birkie]

I've been getting acid wash back and a burning sensation in my stomach with a bad pain

Acid reflux is typical when hypo/on inadequate dose

You need to find some way of increasing B12

Have you tried these drops

natureprovides.com/products...

And what’s folate level

Post discussing different B complex

healthunlocked.com/thyroidu...

[birkie in reply to SlowDragon]

Truthfully slowdragon I've tried and spent money on vit d , b12, magnesium, in tablets, drops and spray formulas none worked they all flared up my colitis.

Example..the vitamin D in drop form for a sensitive stomach ect..I felt awful on it not to mention the gastric side effects but the fact it raised my calcium even further making me very ill.

As I said ...I asked for b12 injections but we're refused by my surgery , but a friend of mine gets injections done privately, spoke to my son some time ago on this very subject and he thinks I should go down the private route, his going to pay....AGAIN!!!

[Caradoc1a in reply to birkie]

You could possibly try cytoplan sublingual B12. 1000mcg. Bypass the gut.

[birkie in reply to Caradoc1a]

thanks For the reply ❤️

I actually tried b12 patches off Amazon 3 months supply but i feel no difference, whats cytoplan?? How does it baypass the gut?

[Caradoc1a in reply to birkie]

It is sublingual so goes under the tongue and dissolves. The absorption rate is 1-2%. It increased my serum B12 so it did work. Not enough for me though as I now self inject EOD.

Cytoplan is the make. They have a website. There is also Nutritional Geeks B12 dual powder tablets which are also good and not expensive and they also dissolved under the tongue, although they are not marketed as sublingual.

[birkie in reply to Caradoc1a]

Yeah I tried vitamin D under the tongue that irritated my gut to😔 I tried the spray no good , my gastric specialist in hospital put me on antibiotics which I also have a bad reaction to gut wise.After 6 days I was still vomited with mud at the back end, he had no idea why this could be, I was on antibiotics [ intravenous] I asked him to take the antibiotics off.

He eventually agreed and within 24 hours I was eating...he said if he hadn't see it with his own eyes he wouldn't have believed it😂.

But yeah it was the antibiotics affecting my bowles.

I've honestly spent money I don't have trying all kinds of vitamin d and b12 , like yourself I think the way forward is b12 injections..my b12 was in the 300s..think it was 324..🤷‍♀️

[Caradoc1a in reply to birkie]

My B12 was 334 and I had neuropathy

[Caradoc1a in reply to birkie]

I hope your gp is better than mine. She won't authorise b12 injections so I do it myself

[waveylines in reply to birkie]

Patches are not very effective Birkie. Lol.... I did try No Shot Sublingual tablets. They are tiny a d dissolve instantly under the tongue. Not cheap.

However even high dose sublingual did not work well for me so moved to self injecting.......bingo!

[waveylines in reply to birkie]

What brand of ndt are you taking Birkie?

Something does seem off as your struggling to increase yet your blood test results shows movement to do so... I've been on ndt for 17yrs. Different brands affect me. Have you checked the fillers?

If a quarter increase feels too much try alternating between the two doses.

Eg 1 1/4 and 1 1/2. Alternate days.

B12 - Has your GP refussed to do further checks like homeostain mmr and Intrinsic Factor? Has your GP read the Nice b12d guidelines March 2024? Which states B12 level between 300-400 is suspicious.

Have you done the symptom check on b12d.org? What symptoms signs do you have?

Have you tried a good b complex with methylfolatate. The b vits work best together. You could take a b complex on top of your b12 supplement

What form is the B12 supplement in - there are 4 types.

[birkie in reply to waveylines]

Hi waveylinesMy ndt is a compound made up by roseway clinic, it's specially formulated for my gut issues, and I've had no problems gut wise since starting it July last year.

But I received my new batch recently and I'm having some gut issues [ can't tell if it's my calcium that's gone over again or this new batch as the symptoms are similar in raised calcium and over medicating, although im definitely not over medicated 🤷‍♀️

I've been on a journey with my vitamin d which when I take it always raises my calcium [ I have primary hyperparathyroidism so my calcium is at the top end anyhow 🤦‍♀️.

As for b12 I've struggled on everything I've tried, my b12 was in the 300 I think it was 324 GP wouldn't entertain b12 injections, I also have trouble with absorption.

As I've managed to stomach these ndt tablets [ in powder form no capsules] I really don't want to be shoving stuff in my stomach in case I have the gastric issues again, I wanted to concentrate on the ndt and trying to get my T4 in range.

My GP couldn't care less about my health, having primary hyperparathyroidism is bad enough, I have a lot of health issues with it..passed kidney stones, calcification in most joints and the LAD in my heart and an long list of other symptoms 😔

I just love how my surgery bother about the things I'm not concerned about.

Like just about an hour a go I received a message from my surgery saying

As you are at risk of cardiovascular disease you are eligible for a tablet..[ no doubt statins] please make an appointment as soon as possible to speak to a GP...🤣🤣🤣🤣

Jezzz I can't even get an appointment to speak to any GP about my primary hyperparathyroidism or anything else 😡😡😡😡

[waveylines in reply to birkie]

Oh Birkie what a ride you have been on! Lol..... stick with your compounded. So glad you are having some sucess. You can still try alternating the dose as I described. I did this in my recent fight back from the wretched Amiodarone. I had to split e try increase by alternating the dose. It worked. Hard work.

B12. Sounds like supplements are not a good idea for you. So injection are probably the way. Unlikely to get them from your GP. If your unsure how you eill react you can try a beauty parlour for initial injection. They will monitor you. It's extremely rare to ha e a reaction. I know someone e who did this as she was really worried she might. She didn't.

Feel free to message me if you want to do this. X❤️

[tattybogle]

hi birkie , knowing your history , and how much of a relief it is to have found a form of thyroid hormone that your gut is ok with ........i would say don't worry unduly about the numbers for the time being .... you are on something you can tolerate, you are getting some thyroid hormone into you on a regular basis .... let your body lead , not the numbers . your body has had a heck of a time for the last few years .it's presumably got a lot of 'fixing up/ getting stronger ' to do , so allow it to get there in it's own time.

i've been trying T3 since July last year ... so 7/ 8 months ... i tried 6 then 9mcg , then 8mcg ( with levo) .. and have gone back to 6 and stayed there for the last couple of months because it's more comfortable , and more sustainable .. because with even slightly higher doses it kept feeling like too much after a few weeks .

Last time i looked my TSH was 2.9 and T4 / T3 not great either , but i'm trusting my body for now ,,, it can handle what i'm giving it and has problems with trying more ... but despite my suboptimal numbers , i am getting gradually stronger physically, i'm managing what i need to for 2 days working, and am recently starting to be able to manage to do 'other things' on one, or even 2 other days a week. without problems .... my body has had many years of functioning at less than optimal on just levo , and so i'm not surprised if it now needs to take many many months of taking just a very low dose of T3 to allow my whole body/ stamina etc to slowly get used to having some direct T3 and making use of that before i ask it to handle any more.

yes i understand your T4 is still below range ... but you know you're getting some every day , and getting some T3 with it , so i would say , relax , keep on whatever dose is comfortable for 'however long that takes' even if it's 6 months .....yes try an increase occasionally just to see what happens ,but don't worry if it feels too much . just go back to what's manageable ~ eventually you will probably need it/ be able to tolerate more ....but if your whole body is currently saying it's not yet fit enough to tolerate more , then trust it ......if it feels too much at the moment give it more time without any pressure to increase just to satisfy the numbers .

'tortoise and hare' .... and there is absolutely nothing wrong with being a really slow tortoise.

[birkie in reply to tattybogle]

Thank you tattybogle❤️

That's been my thinking, go back to the one and a quarter grains be the old tortoise 😂🐢, I've been lucky enough not to have to pay for bloods as my surgery have agreed to do them because my T4 is still low.

But the bloods done in January... a random GP rang me to have it out with me😂 firstly he asked WHY I was not picking my T4 levo thyroid medication up?

I did the ndt explaining, and he duly told me to go back on T4...NO!!

He mentioned my T4 result as been hypo..OK I know that!

But I'm trying to increase slowly...so with that he as agreed I can have further thyroid bloods done at the surgery, I'm making an app for March 17th, I thought if I could get past the 1 and a half grains maby the slight increase would show in my T4🤷‍♀️.

Also my next prescription of ndt I must present my new bloods before I can aquire my next prescription , and I'm sure the lady said we can look at your levels of T4, T3 and if any adjustment is needed we can discuss this...maby increasing or decreasing the amount of T4, T3.

So I will discuss this with roseway .

Also not to sound like a broken record, 💿 I'm still having parathyroid symptoms which is hard to separate from over or under medication😔

[tattybogle in reply to birkie]

funny how they can manage to be worried about your below range FT4 when it suits them to ~ when we all know damn well they wouldn't give a monkeys about it if you were struggling to get a diagnosis of hypothyroidism with TSH in range .

you could always play them at their own game ... loads of NHS GP are only testing TSH now , not even fT4 , .. i'd smile sweetly and say , "oh it's ok Doc, i'm so happy my TSH is in range and going in the right direction, so i'm really not too worried about my fT4 at the moment"

[Jazzw]

What about your iron/ferritin levels? I’ve often observed here (with nothing but having noticed a trend—can’t back it up with solid research sorry) that those who are low on ferritin struggle to raise their thyroid hormone dosages.

Gonna agree with the others and cheer you on though—you’ve come a long way from where you were. I know it’s not far enough yet but you seem to be a lot nearer than you were. Here’s hoping things continue to gradually improve for you xx

[radd]

birkie,

You don’t sound say how you are actually feeling on this dose?

If you feel hypo but can’t increase NDT because FT3 goes too high, you could try increasing FT4 by adding some Levo.

I know Levo previously gave you gut issues but I found taking it alongside NDT is a whole different ball game because everything is already working so much better.

Many of us can’t take enough NDT to fulfil our thyroid hormone needs because the FT4:FT3 ratios are so different to our own.

[birkie in reply to radd]

hi

I'm discussing this with roseway on my next prescription, i have to present my new thyroid bloods, the representative told me they could look at my latest T4, T3 and if adjustments are needed they will apply them

Like you say I may need more T4 and less T3 so I'm hoping we get that sorted at my next appointment 👍

[radd in reply to birkie]

Oh of course, you are on compounded birkie, so Roseway will make whatever ratios are required. Therefore, you won't need any added Levo. Given your history this must be better for you.

[pennyannie]

Hey there Birkie :

On NDT we track on the T3 and the T4 can be much lower than when on synthetics -

With NDT there are no ranges to try and achieve and you dose to the relief of symptoms -

I'd just try a build on what you have already achieved - though totally appreciate your situation.

The ranges were introduced to be used with Big Pharma's synthetic treatment options.

[birkie in reply to pennyannie]

thanks pennyannie.

So I have a bit of a dilemma in that I also have primary hyperparathyroidism and with that illness comes horrible symptoms especially when my calcium goes over range or at the top.

In 2021 my calcium was 2.59......range...[2.10 ----2.60]

I had the worst symptoms my heart rate was 142 bpm GP sent me to hospital they did bloods and as I said my calcium was ..2.59

I presented at the hospital with the following symptoms

sweating profusely

Fast heartbeat

tremor , shaking

Felt sick, and vomited in hospital

bad back pain [ later found out I'd passed a kidney stone]

Had calcium crystals in my urine

And a very bad stomach pain..[ not cramps]

I actually did a silly thing in saying I felt hyper especially with the tremor, sweating, and fast heartbeat.

So the trainee GP jumped on the fact I was probably over medicated [ I was on T4 levo and struggling gastric wise with it] I knew my last blood results and I was definitely not over medicated.

after he looked up my bloods he agreed I'm not over medicated, so why all the symptoms?

He had no idea 🤦‍♀️ so I mentioned my calcium level..his response..your calcium is in range so that can't be the cause of your symptoms...for goodness sake!! One point off the top range and my body CAN'T be responding to a calcium level of 2.59 🤦‍♀️

So I can never tell if the symptoms are linked to my calcium and pth going out of range or the ndt🤷‍♀️ I can say since starting ndt I've had no gastric problems, and I've increase slowly but are finding it hard to get to 1 and a half grains.

obviously my parathyroid flare ups come and go , but they can last for days or weeks so I never really feel well , so I can't say other than taking the ndt which doesn't give me gastric issues I don't feel much of a difference, I've also put on a lot weight 😔 but I reckon that's because I don't have the diarrhea and gastric issues anymore 🤷‍♀️

[FancyPants54 in reply to birkie]

I listened to a YouTube talk with Dr Conway (the Bristol based thyroid clinic) yesterday. She prescribes Armour. She said something interesting. She has observed improvements in patients 9 -12 months after settling on a dose level. We may just not be leaving ourselves long enough to know if our dose is right. She was surprised by this. But apparently it happens. Slow improvements that carry on improving on Armour.

I have done a lot of experimenting. My blood numbers are quite low for FT4 and FT3, below 50%, often more like in the 30$ and I don't feel well. But I have tried hard to raise the Armour from 2 grains to 2&14, then 2&12 and felt terrible and noticed blood results go down. When I reduce back to the 2 gains, I feel less unwell and my bloods improve. Same thing has just happened by adding levo to my 2 grains. I got up to 50mcg a day of Levo with my 2 gains. Absolutely no. My body was a right mess and blood numbers fell. I'm back down to 2 grains and 37.5mcg Levo now and my body is reacting better. But I do think I might be better off if I drop that back down to 25mcg. Jury is out as to whether I need to reduce to 2 grains only again and try adding some T3. My bloods definitely go backwards if I push my dose higher.

[nightingale-56]

Oh so sorry to hear this birkie . Although I have been fairly good, they are not perfect for me, but the best around at the moment. Until a year ago my results were good, but mid-2024 they began to get a bit high - 6 (3.1 - 6.8), so I lowered them by 1/8 grain; they went up again (6.3) so I have now lowered them again and will test in a couple of months time. I have been told my antibodies were up, so Graves being awkward again.

Hope you manage to get things sorted as I really began to get pleased for you.

[birkie in reply to nightingale-56]

thank you for your response ❤️

OK I had graves thyrotoxic [ thyroidectomy in 2019] I asked my surgeon a few weeks after my op about graves being auto immune, he told me because he removed my whole thyroid I no longer had a auto immune problem , and I no longer had antibodies linked to graves.

I no longer had graves 🤷‍♀️

Do you still have a thyroid ot part thyroid?

[nightingale-56 in reply to birkie]

I still have Graves even though I had 9/10th's taken away while 14 weeks pregnant. Daughter born well 3 weeks early and big for weeks - 7lb 7.7 ozs. She was born well and her two boys are now 16 and 14 and well. Even though you have your Thyroid taken away you still have Graves. You never get rid of it, so you always have an autoimmune problem. As we no longer have Graves antibodies taken by NHS, how would we ever know? My Thyroid Gland actually grew again about 20 years ago, but is not working still.

Wish you well birkie . xx

[birkie in reply to nightingale-56]

ho my...so you still have thyroid tissue, I was supposed to have had full thyroidectomy due to it being toxic.

But by having scans to identify the rouge parathyroid gland, something lit up on my right side, my surgeon did a fine needle biopsy to determine if the tissue was a parathyroid gland, it turned out to be thyroid cells😲 she found my thyroid had grown back within the right thyroid lobe bed , but it was apparently not producing any thyroid hormone...OK! but could I still have graves anti bodies then?🤔

Never got an answer to that because she put me back into GP care because I was under her for parathyroid not thyroid 🤦‍♀️and my GP makes Dr crippin look respectable 😄

[pennyannie in reply to birkie]

As I understand things - we only get diagnosed Graves when the thyroid and or eyes become targets of the immune system.

We still have Graves but with the thyroid removed or totally disabled by RAI thyroid ablation the symptoms expressed are no longer life threatening and of little interest to mainstream medical.

There is nothing else they can do for us and we are left with a chronic long term multi organ AI disease for which there are no medical answers.

[birkie in reply to pennyannie]

Yeah it really bugs me that , because I've mentioned things to my GP and specialist's [ this was sometime ago as I don't see any endocrinologists now] but I did ask if I was attacking my thyroid [ I didn't have TED] could I attack another part of my body?GP...absolutely not you don't have graves anymore, same answer from endocrinologist 🤷‍♀️

And after being diagnosed a second time with primary hyperparathyroidism I often wonder if you could attack you parathyroid glands rendering them overactive, just like the thyroid 🤷‍♀️

[nightingale-56]

I believe you can birkie , but not entirely sure. Not sure any GP or Endo are fully conversant with Thyroid (or other hormonal) problems these days. They just do not seem to be taught much at all, but it really is disgusting when they try to gaslight us over their poor teaching. My two GP's are downright dangerous, although one has a better bedside manner than the other, who told my Son's Carer (lovely chap) not to believe anything I told him as it was dangerous (as he slowly tries to kill my Son)! Heaven help us!