Can NDT help with low calcium levels?

[Britpol]

Since my total thyroidectomy in April I have been on put on 125 mcg of Levothyroxine and am tolerating it quite well ( no gastro problems like with most tablets and energy levels ok ) except for extreme muscle stiffness and joint pain. Calcium levels tend to be fluctuating between ‘ normal’ and low. Have been given alfacalcidol to improve calcium absorption, but there is not much improvement. I am tempted to start private treatment with Armour thyroid, to see if it will improve matters. My daughter is on it and feels very well. She has Hashimoto and did experience joint pain when on Levo prior to taking Armour.?Is it worth trying? Any suggestions will be greatly received

[SlowDragon Administrator]

Too early to say yet

Get yourself FULL thyroid and vitamin testing first

what was reason for your thyroidectomy

Which brand is your levothyroxine

Generally good idea to always get same brand levothyroxine at each prescription

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Symptoms of hypothyroidism

thyroiduk.org/wp-content/up...

Tips on how to do DIY finger prick test

healthunlocked.com/thyroidu...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

[Britpol in reply to SlowDragon]

Thank you SlowDragon. My thyroid grew too big and caused swallowing problems. I am awaiting results if the blood test including vitamins; previous test was ‘OK’ but will insist on getting the printout .

[SlowDragon Administrator in reply to Britpol]

NHS rarely tests anything more than TSH

Was recent test done correctly…..early morning, fasting and last dose levothyroxine 24 hours before test

Have you ever had thyroid antibodies tested?

[pennyannie]

Hello Britpol :

A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1,T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg.

The thyroid is a major gland responsible for full body synchronisation from the physical through to one's mental, emotional, psychological and spiritual well being, regulating one's inner central heating system and one's metabolism.

Some people can get b on T4 - Levothyroxine only.

Some people find that T4 seems to stop working a well as it it did - and fin by adding in that little bit lot - when they lost their thyroid - they are able to restore T3/T4 hormonal balance and feel better.

Some people can't tolerate T4 and need to take T3 only - Liothyronine.

Whilst others feel improved taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland and derived from pig thyroids. dried and ground down into tablets referred to as grains.

Generally speaking the NHS start everyone on T4 monotherapy and currently it is the only thyroid hormone replacement readily prescribed, whether you have a thyroid or not.

It has become something of a post code lottery obtaining the more expensive treatment options through the NHS with some areas of the country more amenable than others -

but you will need a referral to an NHS endocrinologist to assess your need if you want to try anything other than T4 monotherapy - and yes,

it is much too early in your recovery to know what treatment option may suit your needs best.

Is your daughter's Armor prescription through the NHS ?

[Britpol in reply to pennyannie]

Thank you pennyannie,

I am seeing an endo both privately and on the NHS. I know the situation with prescribing the ndt and so does my Endo. He sent my husband who also has Hashimoto to Wales to have ndt prescribed there, but he pays for the prescription privately, as does my daughter. They both are fine taking it, after suffering when taking Levo. I Have the enzyme that converts t4 to t3 effectively but calcium levels are a problem and since ndt contains calcitonin, I thought it could help.

[pennyannie in reply to Britpol]

I can't fault your logic -

and reads as though you already have a well trodden path and a support network in place :

I had RAI thyroid ablation for Graves back in 2005 and on T4 monotherapy became much more unwell around 10 years later which was when I started dong my research as I was referred to as a conundrum. and refused T3 and T4 blood tests as standard or someone without a thyroid.

The blood test, which I had to pay the NHS for - showed a suppressed TSH and a very low T3 with a top of the range T4 and T3/T4 thyroid hormonal imbalance.

Refused both T3 and NDT through the NHS I have been self medicating with NDT for around 6 years now and have my life back - and good as it's going to be from having being treated with a toxic substance, which is still the first line treatment for so many Graves patients.

ncbi.nlm.nih.gov/pubmed/306...

[Britpol in reply to pennyannie]

I am sorry to hear your story pennyannie. You havd hond through a lot. When my thyroid became overactive, I was given Carbimazole, which, U think, made if grow too big, because the med blocks iodine that the thyroid needs. Dreadful treatment. I have a reasonably knowledgeable endo who tests for t4 and t3 and even added vitamins on my request! He is not too sure about ndt , but knows if helps some patients. Deep down I know I will end up on ndt but not sure how long I shall need to suffer, before I get there.

[pennyannie in reply to Britpol]

Well there is no point suffering as it only makes the journey back to better health longer and more complicated.

We are reading of people already prescribed Armour / Efra on the NHS facing being deprescribed - which is alarming -

New patients seem to fair the worst from the current system and forced to buy without prescription from overseas - !!

[Britpol in reply to pennyannie]

I understand that in Wales where ndt is licensed they stopped prescribing ndt on the NHS. Do we know how many ndt users do we have as a proportion of the total thyroid patients? Do those who are on ndt have any problems with calcium levels?

[pennyannie in reply to Britpol]

I didn't know NDT is/ was licensed and more freely prescribed in Wales :

I'm sorry - I have no idea - I self medicate - run my own blood tests yearly and presume I'm not on any records anywhere.

I did advise my surgery of my decision and to cancel my T4 prescription but heard nothing back and around 18 months later T4 disappeared from my prescription which now just contains eye drops and a pessary for womb atrophy.

I offered to send them copies of all my private blood work and that I would make myself available for the yearly function test providing a Free T3 and Free T4 were run - I've heard nothing back and that was in 2017 and thankfully I've had no need to go there since.

[helvella Administrator Thyroid UK in reply to Britpol]

I'm not aware that Wales is significantly different to England.

It might be that certain specific consultants, at certain specific facilities, are more likely to support prescribing of desiccated thyroid. But that does not seem to extend to it having a licence or otherwise being endorsed as a regular NHS treatment.

The paper below appears relevant.

Is there a role for natural desiccated thyroid in the treatment of levothyroxine unresponsive hypothyroidism? Results from a consecutive case series

Adrian H. Heald, Lakdasa Premawardhana, Peter Taylor, Onyebuchi Okosieme, Tasneem Bangi, Holly Devine, Mark Livingston, Ahmed Javed, Gabriela Y. C. Moreno, Torquil Watt, Mike Stedman, Colin Dayan, Dyfrig A. Hughes

onlinelibrary.wiley.com/doi...

[Britpol in reply to helvella]

I think you are right; it is probably just limited to specific consultants who have interest in natural remedies and want to help patients rather than fob them off.

[helvella Administrator Thyroid UK in reply to Britpol]

The problem with any assertion about calcitonin is this:

We have little to no evidence that calcitonin remains in active form in desiccated thyroid, and that it can be absorbed if taken in tablet form.

Calcitonin, which is sometimes used as medicine, is delivered by other routes such as nasal spray to avoid it being degraded in the stomach. (And they use salmon calcitonin for some reason.) Even if desiccated thyroid still contains calcitonin, which is potentially active and not degraded, it could get digested in the stomach.

Further, while the differences seem small and possibly are irrelevant, porcine calcitonin is not identical to human calcitonin.

However, the lack of evidence doesn't mean it is impossible. Simply that until suitable research is done, we simply do not know and there are reasons to question the likelihood.

Not wanting to be negative, because indeed it might help, but also don't want to see you get convinced it will definitely help and then be very disappointed.

[Britpol in reply to helvella]

Thank you helvella. Very interesting re calcitonin. Do we know if patients on ndt have any calcium problems ?

[helvella Administrator Thyroid UK in reply to Britpol]

Afraid I'm not in a position to answer that - anything I said would just be a collection of anecdotes I happen to have seen.

Have you also considered parathyroid hormone?

Hypoparathyroidism

Overview

Hypoparathyroidism is an uncommon condition in which the body produces abnormally low levels of parathyroid hormone (PTH). parathyroid hormone (PTH) is key to regulating and maintaining a balance of two minerals in the body — calcium and phosphorus.

The low production of PTH in hypoparathyroidism leads to abnormally low calcium levels in the blood and an increase of phosphorus in the blood.

mayoclinic.org/diseases-con...

[FoggyThinker]

A quick one on joint pain, mine actually got worse initially on NDT but seems much improved now I'm trying to increase my low cortisol (and still on NDT). I guess it would depend on the cause of the pain (and award myself -100 points for stating the %&&$$ obvious!!!). Don't know if that helps but maybe consideration

[Britpol in reply to FoggyThinker]

Thank you Foggy Thinker. It is my calcium, I suspect, my main problem .

[radd]

Britpol,

NDT (or Levothyroxine) won’t replace calcium but they can alter the rate it is being utilised.

Calcium is used for so many functions and regulated by the parathyroid glands that require Vit D to absorb calcium from the gut into the blood stream.

It is common to have Vit D deficiencies in hypothyroidism. Have you had Vit D tested?

[Britpol]

Thank you, radd. I will check my Vit D level once I have the printout of the results, as have been told they were 'normal. My para-thyroids were disturbed during surgery so the surgeon put me on alphacalcidol (form of Vit D enzyme) , but he wants to wean me off it, because the para-thyroid hormones appear to be 'normal' (not that anyone knows for sure what 'normal' is). My symptoms of muscle stiffness and pain are consistent with low calcium absorption, even though blood calcium levels may be acceptable. If ndt regulates calcium absorption, it may be worth a try. However, once on ndt, it may be difficult to go back on levo, if hings don't work out.

[J972 in reply to Britpol]

Hello, I’ve just come across your post. I know it’s a little dated but I’m curious about what you say about low calcium and joint pain and stiffness. I wasn’t aware of a link, are you able to elaborate on where you learned about it? I ask because I have below range calcium levels and joint pain and stiffness. I’m in the process of improving my thyroid levels with T4 & T3.

And how are you now? Did you pursue the NDT route?

Thank you 🙏

[Britpol in reply to J972]

Hi J972,

I developed low calcium levels after total thyroidectomy during which my parathyroids got damaged, so I am taking 1500 mcg calcium supplement plus alfacalcidol which is a kind of vitamin D enzyme helping with the absorption of calcium. These were prescribed by my surgeon and then endocrinologist. I am on 112.5 mcg of Levo which I need to top up to 125 mcg twice a week. My TSH is around 0.5 but T4 and T3 are in the upper range , so I don’t think I need to change the dosage of Levo which is Accord 100 mcg plus Wockhart 25 mcg, split some days. Despite that, my calcium levels are still low and I have been told that they are responsible for my muscle cramps and stiffness. I started to have side effects from calcium, which is calcium carbonate, which gives me very dry mouth at night to the point of disturbing my sleep, so my endo is trying to find an alternative calcium preparation like calcium citrate. It is also true that an inadequate dosage of Levo can cause joint and muscle pain/ stiffness but not in my case. I think I need NDT to feel better but it is an expensive route to follow, costing around £1,000 annually ( both my husband and my daughter are on NDT, Armour brand and are doing well). I got a couple responses to my question about calcium and one suggested that NDT facilitates the absorption of calcium and the other that calcitonin in NDT is of a different type to human one. I have just decided to try NDT but my Endo will keep me suffering little longer before making a referral to a doctor that will prescribe it. Then, if NDT does not help, he will have me back on Levo. Apparently, NDT does not suit everyone but I wonder if this is because people did not persevere with it , because it takes time for the body to get get used to it. I hope this helps. All the best.

[J972]

Thanks very much Britpol, I appreciate your response. I’m sorry to hear about your parathyroid glands being damaged, I understand this can happen when thyroid removed. Thanks for confirming what you’ve been told about low calcium and joint pain and stiffness. My calcium came in at 2.19 mmol/L [2.2 - 2.6] in June. GP completely disinterested in following it up but I recently insisted that it warranted re-testing so I’m going for a blood test next week. I’ve also requested that my phosphate levels are checked. If there’s an anomaly with these I’m going to request a parathyroid blood test.

Some forum users recommend this brand of calcium citrate, it’s available in tablet or powder form:

uk.iherb.com/pr/now-foods-c...

All the very best 🙏

[Britpol in reply to J972]

Thank you J979. I will certainly try the recommended calcium supplement.

Well done re. your blood test; parathyroid hormone test is quite expensive. I found most private labs quoting around £150, although Blue Horizon advertised it at £119. My calcium level is 2.13 ; if it gets to 2.15, my endo is likely to take it as ‘ normal’ and lose interest in treating the parathyroid, although I may be able to change his mind ( he is a thinking doctor). I have pointed out to him that I am not a statistical average.

Thanks again and good luck with you tests and treatment!