NDT and hospitals

[serenfach]

Quick question - I take NDT, but if I was in hospital, would they give me my pills or would they start me on Thyroxine, due to "protocol"?

Anyone been in this situation?

Thanks.

[shaws Administrator]

Just take your tablets with you and if they query what they are just say they are your thyroid hormone replacements and take 1 per day (or 2 or whatever you take) as usually I think the hospital looks after our medications. Other members will also comment if they've been in hospital and had the same worry as yourself.

They usually look after patients' medications and distribute them. Those hypo members who've already been in hospital will respond as to how they were treated.

[Avidreader]

Had no problems with taking NDT in hospital - professional nurses etc seem extremely interested and as we all know so many people don’t do well on levothyroxine that many are keen to know more about

Thyroid alternatives !!

[shaws Administrator]

Thank for that information Scrumbler, so it is levo, levo only or nothing at all in hospital, unless we take our own replacement hormones with us? Would they allow us to take our own (i.e. self medicate) or would we have to 'hand it over'.

[bantam12 in reply to shaws]

No they won't allow you to self medicate, everything has to be handed in and checked by the pharmacy. If you were in ITU you wouldn't be able to take your own meds even if you did manage to hide them !! You can't pretend you don't have a thyroid problem so there is no way round it.

[bantam12]

Be very careful, if the hospital Drs don't agree with your medication they are under no obligation to give it to you. My husband was not given his T3 meds while in ITU despite my protests.

[Hillwoman]

I think this question was discussed on the forum a few years ago. As far as I can remember, people had had rather variable experiences, a few of them pretty unpleasant. I've known a couple of people who had privately obtained essential meds whipped off them by nursing staff, never to be seen again. Which is theft, of course.

Let's hope staff understanding has improved since then! I don't know what would happen now if ward staff knew you were taking non-standard, off-prescription thyroid meds, but I'd be inclined to keep quiet about what you're doing unless absolutely necessary. I would think an anaesthetist, for example, would need to know what you're taking, and why.

If you think you'll be well enough to take your thyroid meds without assistance while you're an inpatient, just keep them with your personal items. But if you think you may be too incapacitated to manage, could a family member or friend call in to help you take them at, or near, your usual dosing times?

[bantam12 in reply to Hillwoman]

It really isn't as simple as " keep quiet" and "help you take them" if you are in ITU and incapacitated there is no way anyone can slip meds in, for starters tablets often need to be changed to liquids or solution for IV so it's just not possible to self medicate.

[Hillwoman in reply to bantam12]

Well, yes, that's why I wrote my third paragraph!

[bantam12 in reply to Hillwoman]

But a "family member or friend" won't be able to medicate you especially in a situation where you can't take anything yourself !

[Hillwoman in reply to bantam12]

Of course not. In which case, you'd need a back-up plan. Why the nit-picking?

[bantam12 in reply to Hillwoman]

I'm not nit picking, I'm merely trying to get across how serious this can be, my husband died because he was denied his prescribed T3 and there was nothing I could do about it, there is no " back up plan" possible. I will say no more and hope nobody else finds themselves that situation.

[Hillwoman in reply to bantam12]

In trying to be helpful to a poster, am I obliged to come up with solutions for every eventuality? I am sorry to read of what happened to your husband, but you are being pointlessly argumentative.

[Hidden in reply to Hillwoman]

I don't think bantam12 was trying to pick a fight.

She's right to bring the issue to everyone's attention; that it's worth considering what you would do if you were unconscious and couldn't self-medicate. Perhaps there are things people can do in advance of it ever becoming an issue.

It doesn't read as pointless to me.

[TSH110 in reply to bantam12]

Oh god that is so awful bantam I am so sorry.

[pennyannie in reply to bantam12]

I can't close down tonight without sending you another hug :

Ticking an icon - that transcribes as a " like " does nothing to console you and the situation you found yourself in is simply awful - I have no words - so it's just another hug :

[humanbean]

A long time ago...

One of the most absurd situations I got into with meds in a hospital is that I was once taking antibiotics and hadn't quite finished the prescription before I was due to have a planned admittance to hospital followed by a planned surgery. I think I had two days worth (of seven days in total) left. I handed them over, as ordered, and allegedly they would be put on my ward notes so I got them back at the appropriate times.

Well, I never saw them again, apart from one capsule when I badgered a nurse for them. She turned up with one capsule, and I discovered it was a different colour to the ones I had been taking. I queried it and the nurse told me "Oh, we've got loads of them and the colour depends on the manufacturer." I took the capsule but I've never been sure that I was actually given what I was supposed to be taking. The missing capsules never did turn up.

The capsules were for an ear infection, and luckily it didn't return.

It was this whole experience that made me very wary of handing over anything to staff in a hospital. And I would certainly never hand over anything that I had paid for without prescription.

[overunbykids]

I am in Australia, so it would almost definetly be different, but I was hospitalised for most of February last year due to an operation causing sepsis, but as the nurses were not familiar with NDT they locked up my Thiroyd tablets up and refused to let me have anything. Thus was despite the admitting Dr for the original operation stating I would self administer my thyroid medication.

I wasn't even allowed to take my Maxalt wafers for migraine, which were prescribed, and the drugs they had me on caused horrid migraines. Only when a midwife nurse walked by and overheard my condition, did anything happen for the migraines. She was a sufferer too and fought with the staff caring for me to get me treatment.

[Jan_Noack in reply to overunbykids]

sounds right. I'm in Australia too

[ShelWhitt]

Quick answers please for an ignoramus. What is NDT. Where did you hear about it. Do you take it instead of levothyroxine.. Who prescribed it for you. Does it work. I am having trouble (amongst a load of other medical issues with my thyroid) but am being blocked by my GP who tells me my medication is fine (but as far as I can tell it is only limited testing and I have never seen an endocrinologist in over 30 years) and that my problems are due to my fibromyalgia. Thank you in anticipation.

[Marz in reply to ShelWhitt]

NDT - is Natural Dessicated Thyroid - containing T4/T3/T2 /T1 from pig thyroid. Sadly very rarely prescribed in the UK. Was once the only thyroid treatment and worked well. Globally it is more and more difficult to obtain. Many people here buy on-line and self-treat.

From reading your posts your problems are due in part to your low T3 and vitamins and minerals. Poor nutrients can hamper the conversion of the T4 you are taking into Active T3.

Do hope 2021 brings you better health .. 🌻

[ShelWhitt in reply to Marz]

Thank you. Now I have dealt with and got over minor op and hopefully all clear; and survived Xmas, hopefully should be able to get back to thinking about solving my other problems again. Although when all is said and done, if it is purely fibromyalgia , we all know there is no cure, you just have to live with it. If you can call it living!Next item on agenda is DH is worrying as he has not yet been called for his Covid Vaccination , when two of our neighbours around his age (82) have already had theirs. Onwards and upwards. I said that last year, and then look what happened!

[SlowDragon Administrator in reply to ShelWhitt]

ShelWhitt

10 months ago you posted on here extremely poor results showing very under medicated and extremely low vitamin levels

Ferratin 97.4 ugl (13 - 150)R

Folate serum 2.19 ugl/L (>3.89)R * Low

Vit. B12 Active 53.2 pmol/L (>37.5)R * ?? low

Vit. D 50.7.nmol/L (50 -175)R * Borderline

Thyroid TSH 5.58 m/U/L (0.27 - 4.2)R * High

Free T3 2.93 pmol/L (3.1 - 6.8)R * Low

Free Thyroxine 16.5 pmol/L (12 - 22)R

Thyroglubulin Antibodies 14.2 kU/L (<115)R

Thyroid Peroxidase Antibodies 57.1 kU/L (<34)R * HIgh

Did you get 25mcg dose increase in levothyroxine

Are you now on strictly gluten free diet

What vitamin supplements are you currently taking

Strongly recommend you get retested and see where levels are now

[ShelWhitt in reply to SlowDragon]

I appreciate your advice and help, and see the logic of what you are saying, but I am struggling to do anything at the moment, other than just about get by. I feel so ill and am in pain all of the time. That is the reason I started looking into my thyroid problems in the first place. This pandemic has not helped me at all as I almost feel guilty for feeling as I do when people are dying , but obviously it has affected the needs of people like me with other problems who are now a loer priority. I have been on levothyroxine for hypothyroidism for over 30 years. I am diagnosed with fibromyalgia and my doctor puts my problems down to that .It seems once you have a label it sticks. I also have spondylosis, degeneration of the spine, osteopanea and a couple of other disc problems; with my spine twisted at the top and bottom. Constant left sided head, neck and shoulder pain with restricted neck movement, plus a swollen gland in my neck. Diagnosed irritable bowel syndrome causing digestive issues, including constant nausea and constipation, and a permanently swollen abdomen and stomach, (which I am not totally convinced are not adhesions as a result of a hysterectomy for endometriosis I had 30 years ago) and right sided abdominal pain,. CKD3. plus pains in my back, and front rib and stomach area. Weakness and pain in my hips and upper thighs and tingling and numbness in my lower legs and feet. Add to that chronic insomnia; the fact that painkillers don't help; and I cannot tolerate other medications which give me adverse reactions including night horrors and hallucinations. My anxiety and stress levels are through the roof and I have had mindfulness sessions to help deal with that. which haven't really helped.

I am also looking after my DH who has dementia, COPD and poor mobility amongst other health problems. Along with running the house and shielding in doors due to Covid I simply cannot do any more. I am teetering on the edge, but because I look reasonably OK, no one seems overly concerned. I am also exhausted through struggling through each day. On top of that I have had surgery on my scalp to remove a carcinoma this summer, which I was dealing with for over two years as diagnosed excema and ended up going privately. That is still not fully healed.I know none of this is your problem, and you are only trying to help but everything is such a fight and I am doing what I can, when I can, and that is all I can do.

[SlowDragon Administrator in reply to ShelWhitt]

If you could look at improving low vitamin levels by taking some supplements some of these symptoms may improve

One step at a time

Low B12 causes pins and needles and numbness in legs

Folate serum 2.19 ugl/L (>3.89)R * Low

Vit. B12 Active 53.2 pmol/L (>37.5)R * ?? low

Folate is deficient.

GP should have prescribed folic acid, did they?

B12 is far too low (but not low enough for GP to prescribe)

Can you order some supplements online from Amazon?

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial. This can help keep all B vitamins in balance and will help improve B12 levels too

B vitamins best taken after breakfast

Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)

amazon.co.uk/Super-B-Comple...

Important to remember....If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Low B12 symptoms

b12deficiency.info/signs-an...

With such low B12 result taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.

B12 sublingual lozenges

amazon.co.uk/Jarrow-Methylc...

Are you currently taking any vitamin D ?

[SlowDragon Administrator in reply to ShelWhitt]

Your thyroid results show you are very under medicated.

Are you remembering to take your levothyroxine everyday

A weekly pill dispenser makes it much easier to see if you have forgotten to take your levothyroxine

How much levothyroxine are you currently taking?

TSH should be under 2

Ft3 is BELOW RANGE

Insomnia strongly linked to being under medicated and especially with very low Ft3

Fibromyalgia is frequently due to inadequately treated thyroid

[ShelWhitt in reply to SlowDragon]

Thank you yet again. On my way to bed. Will have a look tomorrow . Currently taking over the counter Vit D but will have to check dosage. It is almost a year from my private test. Dr. wouldn't acknowledge it. It has to be their own NHS test. Did have bloods taken again but can't recollect what exactly was tested. (By doc.). I know Thyroid was 'back to normal'. I am on 75mcg and 50 mcg alternate days.Did eventually get my records from doc, so can check what they did do. Actually had a blood test yesterday as asked for my thyroid to be tested again. Having a phone consult next Tuesday. See what she says then.

[Marz in reply to ShelWhitt]

Let us know what the GP tests ! Don't forget to ask for your results with ranges !

[Marz in reply to ShelWhitt]

Low VitD linked to many cancers. Yours would be better at 100+

[cj2000]

I was in hospital for three days a few years ago and they wouldn't allow me to take my thyroid meds. They said my blood work showed normal levels so there was no 'protocol' to give me meds when I didn't need it. Despite my telling them the blood was normal BECAUSE of the meds I still wasn't allowed to take any!

[SlowDragon Administrator in reply to cj2000]

Madness knows no bounds .....unbelievable

[KnackeredKaty in reply to cj2000]

Were you in hospital in the UK?

[cj2000 in reply to KnackeredKaty]

Nope - one of the better Dublin hospitals. But it does seem to be an illogical piece of logic...

[Anna0778]

I was recently in hospital for 8 days and luckily remembered to take my armour thyroid with me. The hospital freaked out at my blood test results but they sent an endocrinologist to talk to me and once he saw my bloods he instantly knew I was taking NDT and wasn’t phased. I am already under (adifferent) endo at this hospital who was aware I was self medicating and also supported me. I did have to explain to every nurse and pharmacist who came round to give out meds, but all of them were very interested rather than awkward, and didn’t make me feel crazy at all which was a relief. They did mention my self medicating on my discharge notes to my GP but he too was already aware.

[Celestialbeing]

A few years ago I had to go into the hospital for an emergency situation due to mastoiditis. The infection cause severe vertigo and nausea/vomiting. Of course, I consumed my PM dose right before the vomiting and vertigo began. I ended up staying overnight in the hospital. When they did blood work we could see how much my FT3 thyroid hormone level dropped. They could not provide me with my NDT. Luckily I always carry extras as I split the dose anyway.

[thyroidnodules]

sorry about your experience but you had me pmsl with the comment "gives me a letter of authority to poison myself"

[serenfach]

Thanks for all the replies - so it seems it depends on the hospital, what you are in for and if you can manage your drugs yourself. A worrying situation!

Last time I was an inpatient, I was opposite a man (urology was a mixed ward, I was in for kidney issues) who was a heavy smoker. They did not give him patches or anything and two days later his blood pressure dropped alarmingly. They were puzzled, so I suggested it may be due to lack of nicotine. They all went off in a huff, but 10 minutes later a nurse put on a patch and they watched his blood pressure rise. Lack of the ability to care? Lack of logical thinking?

Then there was one doctor shouting to a patient in the next bed (curtains being sound proof of course!) "who found you when you were unconscious"? After shouting it a few times and not getting a reply, I shouted back "if he was unconscious, how would he know!". I got glared at!

Fingers crossed none of us have to go to hospital for anything!

[pennyannie]

Yes, I've done similar but sadly I've no specialist to name though I did advise my surgery of my self medicating with NDT around 2 years ago.

I did offer to make myself available for the yearly thyroid blood test on the basis that both T3 and T4 would be tested - but I never received a reply to my letter, which I asked to be put on my medical records.

I can't see anything of my medical records as when I go on the NHS app on my laptop into my surgery all I am offered are repeat prescriptions, but have noticed Levothyroxine has been removed so all's good with the delete prescription button.

[pennyannie]

Thank you :

Seeing that it takes one to know one - I ditto back to you :

[Hidden]

I would NEVER hand over my NDT tablets in hospital. If they were forced off me I would call the police - and I joke not!!! I've been presented with so much nonsense from the NHS regarding NDT that I simply am unprepared to accept any more crap.