I've been taking NDT prescribed privately by roseway labs since July 19th 2024 my reason for trying it was because I had trouble stomaching the T4, T3 synthetic hormone my levels were always awful and I'm sure I had an absorption problem.
All gut and stomach issues have resolved now I'm on NDT my T3 level is now in range apart from T4 and TSH
DATE TAKEN..20th Sep 2024👇
Which is T4...8.6...range..11.00..22.00]
T3..4.3....range..3.10..6.80]
TSH...18.3...range...0.30..4.50]
Note...new TSH taken on Nov 4th 2024 at[ 2.65..now in range, no T4 or T3 taken on this blood draw🤦♀️
I've found since taking the NDT I've put quite a lot of weight on🫣 noted by my clothing which is now either very tight or just doesn't fit, it's mainly round my stomach area, and my boob's have grown out of my bra's ☹️.
Now I'm thinking...could this weight gain be because I'm no longer having gut issues especially the constant diarrhea I was having whilst on the synthetic T4, T3??
I've tried increasing the NDT but I get overactive symptoms, I've had to decrease from one and a quarter grains back down to one grain , which seems OK, but as I have mentioned I also have primary hyperparathyroidism so the symptoms are hard to separate and my PTH went overactive again in Sep.
My next prescription is in 2 months with a new thyroid blood test in Jan, I'm wondering if there is no improvement in my T4 what would roseway recommend?
Apart from me having no gastric issues with the ndt I feel great gut wise 👍
But I don't yet feel a marked improvement in my body, also I'm struggling to get up in the morning, it feels like my cortisol is low, I don't have the strength to go on the toilet and feel so fatigued, it tends to wear off later in the day and I feel as if I have a bit more energy later on in the day👍
Anyway I have the LTC [long term condition] exam and blood tests in January and I'm assured it will contain full thyroid and parathyroid bloods and full blood count, I've also asked for other including magnesium, phosphate, cholesterol etc...fingers crossed they actually deliver 🤞
I will post them when I receive them👍
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birkie
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Yes I split into 3, but I was trying to get from one grain to one and a quater [ AGAIN] then one and a half but found I was having a fast heartbeat coupled with some sweating and flushing in my face so I dropped back to the 1 grain.
But these symptoms coincided with my parathyroid gland going overactive AGAIN!!! so as I've said...it's hard to know what's what!!
Actually my GP won't test my thyroid levels as I'm on private ndt prescription, the thyroid bloods were a fluke the nurse did them, and the TSH was also a fluke that's why she didn't do T4 ,T3..because she obviously didn't read or know what bloods I was having done😁.
And the only reason I'm getting them done in January is because I'm having the [ LTC] which includes thyroid and parathyroid bloods because they are my conditions, as I said I've also got other bloods I'm requesting also the ones you have mentioned.
But I'm finding it hard to increase without getting over medication symptoms 🤷♀️
But again that could be the phpt,...GP also put me on loading dose of vitamin D because my parathyroid was over range, this can then cause the calcium to increase causing even more horrid symptoms 😡.
I purchased my own vitD in drops, 2 drops per day because the surgery only pescribe those brilliant blue, red, or yellow ones which caused me no end of pain 🤮🤮
I tried a nite dose but found I couldn't sleep, I felt a bit hyper, I even tried splitting it from 3 to 2 times a day and felt hyper.
The most noticeable thing is the very red flushed face and sweating also my heard beats faster, but I have primary hyperparathyroidism and my GP as urged me to take a loading dose of vit d which can raise calcium..these symptoms can over lap so it hard to separate the symptoms of feeling hyper to raised calcium because raised calcium can give you sweating, fast heart rate and a flushed face🤦♀️
But I'm finding it hard to increase because of these symptoms 🤦♀️
low vitamin D can also be caused by a parathyroid tumor. The connection between parathyroid disease and low Vitamin D can be confusing, even for many doctors. Parathyroid tumors cause low Vitamin D, not the other way around, and low Vitamin D cannot cause a high calcium. You cannot treat a parathyroid tumor with high doses of Vitamin D.
My vit d was 32 my pth was 7.4 my calcium was 2.41 adjusted to 2.39.GPS and endos see the raised pth and give loading doses of vit d thinking it will raise the calcium therefore lowering the pth.
What they don't realise is when a person's calcium is mid to top end giving large loading doses can cause calcium to rise.
Large loading doses should only be given if the calcium is bottom end of the scale this is secondary hyperparathyroidism where calcium is low and pth is raised.
Normocalcemic hyperparathyroidism is where the calcium remains middle to top end but the pth is raised , on our parathyroid site it's recommended if your calcium is middle to top you should not take large loading doses of vitamin d.
I've tried several times to increase my vitamin d with not much success, I did manage to get it to 58 but it soon decrease again.
I've had this out with my GP several times I asked her why she wanted me to try a high loading dose of vitamin d again.
Her answer " taking high doses of vit d will raise your calcium therefore decreasing your parathyroid 🤷♀️ now personally I think that's crap, I have been diagnosed as falling in between primary and normocalcemic .
But my GP is just gaslighting me my calcium bounces in and out as does my pth I think the low vitamin d is just a get out clause for the GP, she told me she as to abide by the guidelines on primary hyperparathyroidism.
I’m sure your nutrition must be much improved now that your stomach is no longer upset by the levo or liothyronine tablets, I think you may have to buy some new clothes! You must be generally healthier & taking in more vitamins etc. So glad you found a solution.
birkie I know many of us have been following you on the Forum. You have been suffering major symptoms for an extended period.
By all means take the excellent advice offered but would you please also remember your prior circumstances? You have put up with hellish symptoms. You sound like you are doing so much better now. Clearly not ‘well’ yet but getting there. Keep working by all means but give your body a break.
I keep wondering myself how much e.g. sleep for example does a body need to catch up on? How much food does this body need now, to service its energy need/conversion? So much to learn yet because been out of sync for so long.
I would guess we all need some time to recover our best selves from this hell we have been/are going through.
I'm getting my LTC tomorrow which as I said incudes an aray of blood tests both thyroid and parathyroid , I'm hoping my thyroid levels show they are all now in range.. I'm pretty sure when those bloods were done in Sep I wasn't on the full one grain so now I'm on the full 1 grain it may show way better levels 👍
I've slowly increased since going on ndt in July 2024 from half a grain to one and a quarter grains, but had to decrease due to symptoms [ which I'm positive are parathyroid related] my main goal tomorrow is to get all relevant bloods done have the body exam.. blood pressure, heart ect.
When my bloods come back.. I'm sure they will be all in range [ well hoping🤞]
If that's the case my GP can no longer blame all my symptoms on my thyroid levels, and will then have to confront the elephant in the room...the parathyroid problem.
I'm constantly having flare ups which consist of sweating, fast heartbeat, shaking, feeling sick, total fatigue and horrid bone pain😔 I've tried several times to try to get my GP to understand the symptoms of primary hyperparathyroidism being similar to thyroid conditions , when I was on the synthetic t4 I was so sick of GPS and specialists saying.." ho your clearly over medicated "
And when these specialists check my thyroid levels they clearly saw I was not over medicated, but can't understand why I have these symptoms.....it's primary hyperparathyroidism you nuts😡
Unfortunately until my parathyroid surgeon can identify the Adenoma I'm left in limbo and left with these horrid symptoms and flare ups, no matter how good my thyroid levels are as long as I have primary hyperparathyroidism I'll really never feel well😔
At least the ground is a bit clearer now. Not sure if GPs/doctors are really clued up. All the evidence (IMO) points to, not very likely. Most of them already seem to be robots. They just look almost human.
Still it’s what we all have to work with. No disrespect intended to males but (IMO) I still think, as this is a condition with a clearly female ‘bent’, it’s a big contributor to crap treatment. For males too, by the same token.
Every day we read about women being discriminated against, perhaps it’s even on the rise.
Couldn't agree more, 👍 especially the male point, we as females get the sticky end of the stick in that most if not all GPS...including female GPS who I'm my mind should know better labelle it as women's problems ie the menopause 😡The amount of women on my parathyroid site who first were diagnosed with menopausal symptoms instead of the actual illness..primary hyperparathyroidism is huge, we have to fight as women.
But the males in our group were very fortunate in that ,there care providers saw the problem almost immediately, and the clincher was there bone scan, because unlike females men rarely get osteoporosis or ostiopeania.
I've been on both sides of the coin in that I've seen both male and female GPS about my conditions , both thyroid and parathyroid and each one told me its my menopause state that's causing my symptoms.
Really I've never heard of anyone having a full thyroidectomy due to the menopause 🤣
I’m just starting on this too do you open the capsules and split the powder to get a 1/4 grain? It says on the leaflet not to but I’ve been told to double my dose from 1-2 grains and it’s too much for my system. I have 1 grain capsules
Hi RoseStar❤️I've gone back to 1 grain now, but when I was trying to increase from 1 to 1 and a quarter then 1 and a half , I took the powder out the one grain capsule put it to the side, then opened the other 1 grain and split it into 2 then took half of the one half grain and added it to the one grain [ I hope that makes sense 🫣].
Think it's best to add it slowly👍
As I say having primary hyperparathyroidism is pants, I go through awful flare ups which can mimic being over medicated, but I'm sure it's the primary hyperparathyroidism causing the symptoms not the NDT , but I feel so rotten especially the profuse sweating and fast heartbeat that I get a bit frightened.
I decreased back from 1 and a quarter grains to one grain [ didn't even reach the one and a half as I felt so rotten]
Good news is I've just had full thyroid bloods taken this morning so I'll see how my levels are on 1 grain.
Roseway who I'm with do 1 grain and half grain capsule 👍
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do you open the capsules and split the powder to get a 1/4 grain? It says on the leaflet not to but I’ve been told to double my dose from 1-2 grains and it’s too much for my system. I have 1 grain capsules 
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