Hospital consultants.

[Pinkpeony]

While I am of a mind to post , what do those of you who are taking their own NDT do when in hospital . I am sick of fighting ignorant doctors and consultants who insist on blaming all my ills , because of a low TSH ,on NDT. My other bloods are fine but they can only see the TSH despite the fact that I don't have a thyroid . I'm afraid I am becoming a tad rude now when confronted with this attitude 😠 Pp

[Lora7again]

Can you manage without seeing one? I have only seen one Endocrinologist and he was useless and offered me counseling because I felt so ill. He trained in Oxford and had wrote papers on thyroid disease so I thought he knew how to treat me how wrong can you be eh? I walked out of his clinic never to return and I don't intend seeing another one until they stop using the TSH as a guideline when they should be looking at just the T4 and T3. Whoever decided to use the TSH as guide to how much medication we should take had no understanding of thyroid disease imho. Also you need T3 if you don't have a thyroid and usually they like your TSH to be suppressed if you have had thyroid cancer. I had a suppressed TSH for over 2 years and not one Doctor spotted it and I saw several.

[Pinkpeony in reply to Lora7again]

Lora, my Endo was useless and I blame him for all the health problems I've had in the eight years since diagnosis . The radioactive iodine treatment is I believe the root cause of most of the problems I now have. I was in hospital in November because of a bad fall and the Consultant was adamant that the weight loss and all my other problems are caused by a low TSH . The Endocrinologist knows I take NDT but says he can't prescribe it 😱 Pp

[Lora7again in reply to Pinkpeony]

The first thing my Endo said was "we can remove your thyroid or give you RAI and then you can take Levothyroxine and you will be back to your old self". I am glad I did my research and ignored his advice after seeing how badly women with hypothyroid are treated here and in the USA. I have lost confidence in the NHS when comes to treating women with thyroid disease ... I do wonder if more men suffered with it they would actually do more to help.

[Pinkpeony in reply to Lora7again]

Yes I was told no more tablets and when I asked he said "maybe just a little one". Since then I've been on Levo. Levo and T3 and now on my own with NDT as the Americans say. Go figure!

[humanbean in reply to Pinkpeony]

Yes I was told no more tablets and when I asked he said "maybe just a little one".

This repeated mention from doctors of the size of Levo tablets is really, really condescending and it annoys the hell out of me!

Do they think women are scared by big tablets?

[shaws Administrator in reply to Lora7again]

You wonder why some patient's don't have a heart attack when they hear remarks like that from 'supposed to be' knowledgeable doctors.

With those remarks no wonder there are so many people who've relied on and believed doctors that they would be fine with levothyroxine and (if they don't have internet connection) will remain unwell till the day they die. (A bit dramatic I know but we realise on this forum that many patients are misled and they cannot now freely get options on a trial basis).

Also, for the BTA to state lies in order to get NDT withdrawn is absolutely beyond the pale. It's dreadful. We used to get it freely prescribed, or T3 or T3/T4, now we are restricted to levothyroxine alone. Also, we are taking up an Endocrinologist's time by not permitting GPs to do the prescribing which they used to do.

[shaws Administrator in reply to Lora7again]

Before blood tests/levothyroxine, we were diagnosed upon our clinical symptoms alone and given NDT.

Big Pharma saw $$$$s or £££££s and introduced 'blood tests' to confirm or not, along with levothyroxine (T4 alone) if patient was hypo. Whereas it had always been diagnosed by doctors through our clinical symptoms alone. We were given a trial of NDT and if we felt an improvement we were diagnosed.

Doctors like Dr Skinner and Dr Peatfield seemed to be the 'last of the knowledgeable' doctors who treated symptoms rather than result of a blood test. Those two doctors were pursued by the 'authorities' for not following the 'modern' guidelines.

I wonder how far Dr Skinner's staff have got in publishing what doctor S and his staff found about the diagnosing/treatment for patients to recover? They kept meticulous records/research and I believe they stated it would shake up the medical professionals.

[meme]

I take my meds with me and hide them, then take them as normal.

[Pinkpeony in reply to meme]

Haha meme, it's in my notes now unfortunately.. I have done that in the past, but can't get away with it now lol. Pp

[Hillwoman in reply to Pinkpeony]

The hospital can't remove privately obtained meds from you, or stop you from taking them. Removal would constitute theft.

[Pinkpeony in reply to Hillwoman]

Hillwoman I did take them. I really meant the earache that I kept getting from all and sundry. Pp

[Angel_of_the_North in reply to Pinkpeony]

Fingers in ears " La la la, I'm not listening" ... Might make them cross but they'll take the hint eventually

[m7-cola in reply to meme]

Good for you!

[Hidden]

I have spent a couple of weeks in hospital this year for unrelated problem. They were keen to deprive me of all medications. I simply refused, explained why I took NDT and they had no answer. Nobody asked me again. It is touching when I go to treatment room to see the nurses' puzzled looks when I tell them what I take. The trick is to be open, be bold and if you encounter any opposition, to tell them exactly what you think of levothyroxine and ask them to explain precisely why they think it is the "gold standard" for hypothyroidism. No-one has successfully tried to justify to me why NDT is blacklisted since I started taking it in 2014.

[Lora7again in reply to Hidden]

NDT was the standard treatment before big pharma started to manufacture it and people did well on it .... Doctors went by symptoms in those days not blood results.

[Pinkpeony in reply to Hidden]

Panda, I have tried on numerous occasions to explain how a version of this saved lives before Big Pharma got their snouts in the trough. Only one Specialist knew about NDT and was quite happy that I was taking it Pp

[shaws Administrator in reply to Hidden]

It was withdrawn through lies and Dr Lowe sent a Rebuttal to the organisation every year for three years and asking for a response but they never did - they just ignored his requests.

drlowe.com/thyroidscience/C...

NDT is the very original thyroid hormone replacement since 1892 and from then on people didn't die a horrific death. There were no blood tests then (Big Pharma has made huge sums from blood tests).

NDTs instant withdrawal through mis-information caused patients immense worry and stress and who tried to source their own.

Who are these people who get paid by the NHS and we, the patients, I'm sure contribute through our taxes. We have to source life-giving hormones by ourselves due to the withdrawals and they also prevent patients from a trial of NDT. I always thought a 'vocation' was different from a job. Here is an explanation:-

"MY friend asked me the other day, ‘What’s the difference between a job and a vocation?’ To me, a job is something that you have to do to survive.

"A job is something short-term and we often hear the phrase “dead-end job” when people talk about their work. There is no long-lasting fulfilment or happiness from a job. It is not uncommon for us to outgrow one job quickly and then search for the next.

On the other hand, a vocation is a calling. We also get deep satisfaction and fulfilment from our vocation. There is emphasis on the person’s talents and abilities in the choice of a career. Some people know what their calling is — to be in service-oriented work, to be a volunteer, to be involved in religious work… the list goes on.

But for others, we discover our vocation along the way. We can start off with a job which, at the end of the day, might still remain as a job. However, we can also start off with a job which later becomes a vocation.

I would like to think that my vocation is touching lives. Simply put, if there is something I can do to make a difference in another person’s life, then that is my calling.

I had the privilege to work among young people in lecture halls and in organisations. It started out as a job but ended up more because thousands of lives passed through my hands."

nst.com.my/news/2016/07/157...

Why were False Statements made about NDT in order to get it withdrawn???? Did these people select a 'vocation' or a 'job'. Did they expect to cause distress/anxiety to patients instead of 'healing' and returning them to good health?

Nowadays, whatever is prescribed may not relieve all of the miserable symptoms and all alternative options have been removed. It's well seen that the majority who are making these decisions, for primarily females, haven't a clue what they're doing. They seem to have no 'duty of care' to relieve all of the miserable symptoms and restore patients to good health.

Just because many seem to do fine on levo, there is a portion of sufferers who do not.

[Pinkpeony]

Totally agree Londinium!

[london81]

a consultant endo at a london hospital confirmed to me that tsh will always be supressed on NDT, I have a letter to that effect and take it with me whenever I go to any appointments. I have so far not met any scorn but I, similar to you, feel entirely frustrated when doctors dont get this. My sister is in australia and on NDT, a doctor told her that her TSH was dangerous despite her free t4 being very low.... bleurgh

[Pinkpeony in reply to london81]

Gosh it's terrifying when you stop and think. The very first time I was in hospital when taking NDT, like an idiot I told them I had my own thyroid meds. After being handed the plastic container with loads of stuff for a serious chest infection I found out later that they had also put in half a dozen levo in which looked identical to some of the other meds. I had an awful lot of thyroid meds that day. 😞

[london81 in reply to Pinkpeony]

so silly isnt it- if levo worked for me I would be delighted- I have spent every last penny on NDT, t3, testing and seeing thyroid nutritionist- no money left!!

[Pinkpeony in reply to london81]

I sympathise. I keep saying every member of the medical profession should be made to live with a thyroid sufferer through all the sufferng they go through with uncaring medical professionals. As someone said in an earlier post if it was predominantly men who had thyroid problems, wouldn't they have found a successful treatment. Pp

[shaws Administrator in reply to london81]

They cannot tell the difference between a high TSH (desperately needs thyroid hormones replaced) or a very low TSH which they assume means the patient has become hyPERthyroid. Nonsense.

TSH is not a thyroid hormone, it is from the pituitary gland and rises if a patients thyroid gland is becoming troublesome.

hormonerestoration.com/

I wish we had more doctors like the following and it isn't surprising he cannot take on more patients:-

"Dear Thyroid Patients: If you have thyroid gland failure--primary hypothyroidism--your doctor is giving you a dose of levothyroxine that normalizes your thyroid stimulating hormone (TSH) level. Abundant research shows that this practice usually does not restore euthyroidism--sufficient T3 effect in all tissues of the body. It fails particularly badly in persons who have had their thyroid gland removed.

TSH is not a thyroid hormone and is not an appropriate guide to thyroid replacement therapy.

The hypothalamic-pituitary secretion of TSH did not evolve to tell physicians what dose of inactive levothyroxine a person,should swallow every day. A low or suppressed TSH on replacement therapy is not the same thing as a low TSH in primary hyperthyroidism. IF you continue to suffer from the symptoms of hypothyroidism, you have the right to demand that your physician give you more effective T4/T3 (inactive/active) thyroid replacement therapy. Your physician can either add sufficient T3 (10 to 20mcgs) to your T4 dose, or lower your T4 dose while adding the T3. The most convenient form of T4/T3 therapy, with a 4:1 ratio, is natural desiccated thyroid (NDT-- Armour, NP Thyroid, Nature-Throid). If you have persistent symptoms, ask your physician change you to NDT and adjust the dose to keep the TSH at the bottom of its range-- when you have the blood drawn in the morning prior to your daily dose. This may be sufficient treatment, but IF you continue to have persisting hypothyroid symptoms, and no hyperthyroid symptoms, ask your physician to increase the dose to see if your symptoms will improve, even if the TSH becomes low or suppressed. You can prove to your physician that you're not hyperthyroid by the facts that you have no symptoms of hyperthyroidism and your free T4 and free T3 levels are normal in the morning, prior to your daily dose. They may even be below the middle of their ranges. Your free T3 will be high for several hours after your morning T4/T3 dose, but this is normal with this therapy and produces no problems. You should insist that testing be done prior to your daily dose, as recommended by professional guidelines. If you have central hypothyroidism, the TSH will necessarily be low or completely suppressed on T4/T3 therapy. In all cases, your physician must treat you according to your signs and symptoms first, and the free T4 and free T3 levels second.

hormonerestoration.com/

We'd really love to have endocrinologists and GPs who considers first and foremost the patient's symptoms and to relieve them returning the patient to completely 'normal health'. How happy and thrilled would these patients be to feel well again.

[london81 in reply to shaws]

absolutely!!! i’ve started getting the research papers from thyroid uk so that i’m never without info and knowledge- so that i can defend my right ( and that of my family) to take NDT. thank you so much for this exerpt

[shaws Administrator in reply to london81]

You're welcome.

[shaws Administrator]

I think you have to be very alert due to the fact that the BTA made the following statement - I think to enble it to withdraw NDT from being prescribed altogether from the UK.

Considering it was the very original thyroid hormone replacement which saved lives worldwide since 1892 and still does to this date.

The fact that the BTA et al had to make False Statements to withdraw it I think it is beyond the pale with no thought at all to the patients who recovered their health upon it since 1892 up till the present day and suddenly patients were left high and dry and worried.

The fact too that despite one of Thyroiduk's Advisers who wrote the following to the BTA et al and followed up this request every year for three years before his accidental death, they ignored completely.

This attitude does go to show why the majority of Endos are forced to follow their guidelines or they may lose their livelihoods whilst the poor patients have to suffer unnecessarily so quite a number of whom have had to give up work.

It also goes to show how very ignorant these 'professionals' are with regard to helping patients restore their health.

drlowe.com/thyroidscience/C...

[Pinkpeony in reply to shaws]

Gosh shaws where do you find a Dr Lowes. Thank you for that very informative post. Pp

[shaws Administrator in reply to Pinkpeony]

Dr John Lowe was a scientist/researcher but most of all was kind and committed to relieving miserable clinical symptoms. He was also an Adviser to Thyroiduk before his death through a bad fall.

[Pinkpeony in reply to shaws]

shaws, thank you so much for all the information. When I first opened this thread I had no idea of the response. It really is a can of worms isnt it with us as the losers? Pp

[shaws Administrator in reply to Pinkpeony]

We're only the losers until we take our own health into our own hands or come upon a genuine doctor who can prescribe what makes our symptoms resolve. Unfortunately many doctors hands are also tied that they cannot prescribe what they would like to.

[Miffie]

I was in hospital recently I handed over all my prescription meds as asked. My NDT I took in daily doses in small self seal poly bags. I just took them late evening instead of in the morning. My husband gave me them as I could only use one arm. They cannot search our belongings so why worry as long as you have some help if you are unable to use your hands/ arms.

[Pinkpeony in reply to Miffie]

The danger is if you're ill and as with me my notes show a thyroid history they bung Levo into the little pot with goodness knows what else you are prescribed. I later inadvertently took my NDT which meant had a double dose. Maybe your records don't show a thyroid problem. I now ask exactly what it is they are giving me. Pp

[shaws Administrator in reply to Pinkpeony]

That's a good idea to double-check what you're being given. Who knows what they might give, and its always best to double check.

[shaws Administrator in reply to Pinkpeony]

Also, because in the UK, doctors are only prescribing levothyroxine and the majority of hypo patients take it - unless T3 is prescribed by an Endo - I think in hospital they'd immediately assume hypo patient takes levothyroxine especially if patient cannot communicate. I think, just in case we should have a stay in hospital, we should have a statement of some sort in our bag stating the dose and hormones we take (plus the timinig, i.e. a.m. or p.m.)

I'd dread it if I was given levothyroxine as I know that all doctors assume it has no bad side effects.

[Pinkpeony in reply to shaws]

shaws, for some reason I thought you took Levo . Its a minefield being taken into hospital especially as an emergency without having to watch what they are giving you.

[shaws Administrator in reply to Pinkpeony]

Three days before I diagnosed myself, I had an overnight stay in the A&E and next day had me running on a treadmill, etc etc and discharged as 'probably viral with a high cholesterol'. They assumed 'cholesterol' was due to my daily diet.

If they had a little incling that a 'high' cholesterol level is also a clinical symptom of hypo and did just a TSH blood test, they'd not have discharged me with the above but as hypo because TSH was 100.

[shaws Administrator in reply to Miffie]

I hope you feel a lot better now and am sorry you were not able to use one of your arms.

[Pinkpeony in reply to shaws]

Good grief it's scary. Thank you for your enlightening posts shaws. Fortunately it was someone else on the thread that couldn't use an arm. ( tho not fortunate for them) Regards Pp