I had started with a new GP after the other one expelled me from his clinic. I was not feeling good and my T3 went up to 7.9 with no medication change. I now see that NP thyroid had a recall of in peace 30s and 60s around October November December 2019. I think it's affected my I think I must have got some of that and caused the weird increases in my lab test. I have been taking 60 NP and 5 T3. Not feeling real good, having some muscle cramps and anxiety and irritation. The new doctor wanted me to entirely dump the T3. I had the incident of the 199 systolic blood pressure sudden attack when I missed one T3 pill so I did not want to completely dump it. I have done this I have raised my NP thyroid to 75 mg and stop the T3 entirely. I have been on this dose for one week and my blood pressure is finally coming down from 158 / 90 to more consistently 134 / 70. I am feeling much better. I was having leg cramps which has subsided oh, my eyes were very puffy feeling and weepy oh, that is much better. I think I'm on the right track. I have an appointment or labs in 3 weeks.I am afraid that he will see the TSH is low like last time and then he wants to lower my dosage which will absolutely make me ill I've been there many times. I just can't find an endocrinologist that actually treats thyroid here in the US, they all treat diabetes and they don't know what they're doing when you don't have a thyroid. It's very frustrating. I have to go where insurance will pay I cannot afford to take off on my own to see a more qualified endocrinologist.well I just hope and pray that this new doctor will not try to change my dosage lower because I won't be able to do that and I won't be able to get my prescriptions filled. Is very scary to me I have been so emotionally crying and depressed it's been a horror, especially because I live alone and I don't have anybody to talk to. Thank goodness for this website. Any encouragement is welcome thank you.
Post thyroidectomy, 3 years: I had started with... - Thyroid UK
Post thyroidectomy, 3 years
I'm sorry you have not been too well and it's a pity doctors - or even endocrinologists - don't appear to know much about dysfunctions of the thyroid gland.
Before blood tests and levothyroxine were introduced doctors diagnosed us on our clinical symptoms alone and given NDT (contains T4, T3, T2, T1 and calcitonon) and made from animals' thyroid glands.
Unfortunately many doctors don't seem to know that a TSH is not a thyroid hormone and that we feel better when it is around 1 or lower. They panic and try to raise it by adjusting patient's dose resulting in symptoms occurring.
I wish all doctors were like the following one who treats patients and not blood tests. He also states and it is no wonder that 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. Unfortunately, the medical profession has clung to the misleading TSH test since some physicians decided to do so in the 1970s. Doctors are taught that hypothyroidism is a high TSH--when it is, in fact, the state of inadequate T3-effect in some or all tissues.
They are taught wrong.
TSH not a thyroid hormone and is not an appropriate guide for either the diagnosis or treatment of hypothyroidism. 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, orl ower 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. The physician cannot object.
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.
Thank you Shaw's for that article. I copied part of the part that says the TSH can be low. So my post was a little bit literate, I was trying to say that NP thyroid was recalled it had 115% over the range of T3 in 60 mg pills and 30s. I just got this letter last week. I believe this was what was going on with my levels when T3 went up to 7.9 and I had not increased any of my dosage. so that was weird and that's when the doctor said only take 15 NP, which was crazier. He seemed to be blaming me and threw me out of the clinic. Of course he did not know about the recall and neither did I. I have forward the NP recall letter to him now. If he cares he could apologize. I don't know if doctors ever apologize if they make a mistake, which is too bad we all make mistakes. The new doctor wanted me to stop the T3 completely, so what I did was stopped the T3 and I raised the NP from 60 to 75. Now finally my blood pressure has come down and I'm feeling better every day it's only been one week on that dose.
Doctors, because they've now not to prescribe NDT - or T3 (which they may have done in the past) are afraid not to follow the guidelines as they could lose their licences.
Once-upon-a time - before blood tests were introduced along with levothyroxine - we were diagnosed upon clinical symptoms alone and given a trial of NDT and if we improved we stayed on it as doctors then diagnosed by patients' clinical symptoms alone and dose adjusted . NDT saved lives from 1892 onwards and Big Pharma wanted a share of the profits by introducing levo plus blood tests. Doctors have now lost the skill of diagnosing hypo patients through their clinical symptoms.
In this modern age, I doubt any doctor knows any clinical symptoms or diagnose by them if known as that's how they did before levo.
If we don't have the right replacement for us, as individuals, we suffer and may lose our jobs or marriages/relationships because our other halves cannot understand at all why we're taking replacement hormones but are not improving - we may even have more symptoms than before being diagnosed.
When we have more knowledge about our condition and symptoms we may well be able to care for our thyroid health ourselves. Of course, we still need prescriptions or source our own (which isn't ideal).
The new doctor already hates NDT, he said it's just a bunch of gushy meat and worthless in its unstable ingredients.
He has made that statement, because "what shall I say politely"? that False Statements were made about this product by the BTA itself regardless of millions of people stabilising their thyroid hormones since 1892 up until last year I believe.
It was the only product that saved lives for those who would have died if not given NDT until Big Pharma saw a way to increase their profits and invented T4 (should convert to T3) but NDT contains all of the hormones a healthy thyroid gland would produce i.e. T3, T4, T2, T1 and calcitonin. It is made from animals' thyroid glands so more conducive to the human body I believe. Dr Lowe also stated in the USA doctors were paid to prescribe levothyroxine.
ncbi.nlm.nih.gov/pmc/articl...
One of TUK's Advisers - Dr John Lowe - wrote to the BTA every year for three years (he then died of an accident) but they never ever had the courtesy to respond. Dr Lowe was a scientist/researcher and when a teenager discovered the importance of T3 in the brain (heart and brain contain the most T3 receptor cells) as his Father and his father's siblings had committed suicide and in his research found that T3 was imperative for overall health and did his utmost to make other medical personnel aware of how important this hormone is especially those who have 'thyroid hormone resistance'.
drlowe.com/thyroidscience/C...
Dr L would only prescribe NDT for those who had hypothyroidism or T3 for patients who were 'thyroid hormone resistant'.
I'm learning so much from you. I wish the doctors I go to would want to learn also. I'm following the knowledge I've gained to medicate myself, and learning to lie better so the doctor will prescribe what I need! Not what I would choose to do but seems to be necessary. I had an epiphany of understanding of how the pituitary detects the level of T3 in your blood, then sends out TSH to stimulate your thyroid if you are low. Well when you don't have a thyroid it doesn't care what the pituitary told it to do. The reason the TSH should be very low when you don't have a thyroid is because the pituitary is detecting the level of your medication in the bloodstream and if it detects that is good it doesn't send out TSH!!! The human body intelligence is amazing. I wish the doctors would have more face in the body's ability to heal itself if it gets the right ingredients.
Show your Endo the letter (don't let them keep it) and see if they will put you on Armour Thyroid or combo of synthyroid and cytomel .... If your medication was faulty and your Endo prescribed it he should have gotten a notification from the maker that NP was having issue.
I would not take a reduction and instead switched based on letter.
The pharmacy said that they do not send it to the doctor that prescribed the NP! I sent him a copy of the letter recalling it and have not received any response from him. I will take the letter to my new doctor but he will probably only say that's why I shouldn't take NDT! I feel so victimized like I've done something wrong! I'm 74 years old and they talk down to you like you don't have a mind and you don't know what you're talking about. I'm so discouraged.
Don't let them discourage you but I do know that you need a prescription. The doctors I believe are afraid they will be penalised if they don't follow the guidelines - due to the False Statements issued by the BTA. That's why many source their own and that should not be the case, especially if we have limited funds.
If we were wealthy I am pretty sure we could get a prescription from our private doctors. Considering the the majority who take thyroid hormone replacements are female we kow if we feel well or unwell on a particular replacement.
In the UK we call it NDT (natural dessicated thyroid hormones) and in the USA they call it DTE (dessicated thyroid extract).
p.s. some members source their own.
I am in the US so I should call it DTE. since the beginning after I had my thyroid out I never felt well on levothyroxine. I am continuing with the NP thyroid even though some was recalled. Acella, the manufacturer, seems to be a very good and caring company. My sister had a heart valve transplant with a pig's heart valve. They pigs apparently are very similar to humans and it makes sense to use their thyroids to help us humans.all the other hormones in the pigs thyroid must be important to our bodies or they wouldn't be there.
If it's good enough for Hilary Clinton, it should be widely available to everyone who wants it prescribed. 
I'm glad you feel much better.
I live in US and paying out of pocket for Endo doesn't necessarily get you a better doctor it's a crap shoot and once your thyroidless you pretty much get thrown away, in my personal experience.
Have you tried armour thyroid instead of NP? Both will lower the TSH my TSH on Armour Thyroid was super low and Endo would know this and test your FT4, T3 and FT3 (if your lucky) most endo won't test FT3.
It's true you can spend the money to go to an endo and you'll get the same treatment if you went to a diabetes doctor. So it's not a matter of money and it's not even a matter of trying to find a new doctor because they all do the same thing. I always ask if they're going to test T3 and if I don't say it they absolutely won't. I repeat it over and over again if they're going to do T3. I am in the US also. I just don't understand why there aren't endocrinologists that actually treat someone who's had a thyroidectomy. They just treat you like you're just a normal low person takes his little pill and you'll be fine.
Well the problem is Endos believe that once the thyroid-less person reaches optimal lab values your good to go and if your lucky they might see you again in 6 months vs. a year.
Certain medications can interact with thyroid hormones and cause the TSH to drop, I have experienced this myself while on Armour Thyroid and taking Cymbalta for chronic pain my TSH hit rock bottom but I knew something was off my hands shook so bad I couldn’t hold a cup of liquid.. lol.
I’m currently on 100mcg synthyroid and 10mcg Cytomel and I’m doing ok but let’s face it no pill can ever replace the real deal.
I believe they treat you as 'normal' but they seem to have no idea at all what clinical symptoms we're suffering from.
Before blood tests became the priority for diagnosing instead of our clinical symptoms we were given a trial of NDT or (in USA) DTE. It contains all of the hormones a healthy gland would produce, whereas levo is T4 alone and has to convert to T3 and it is T3 which is needed in our millions of T3 receptor cells in order for us to function as normal, with no symptoms and feeling well again.
Before the introduction of levothyroxine and blood tests, we were diagnosed upon our clinical symptoms alone. Doctors knew all of the symptoms and we were given a trial of NDT and if we felt better we continued on it with small increases until we were symptom-free.
Maybe those doctors who don't understand how unwell a person whose had a thyroidectomy copes without a thyroid gland at all and expected to be 'fine' on levothyroxine alone. It is a huge mystery to me. The fact that the professionals don't seem to be 'very professional' in that they should know what thyroid hormone replacements will ease all of the horrible symptoms.
I have my thyroid gland but was far more unwell on levo before I diagnosed myself. Doctor told me the day before that there was nothing at all wrong with me. He took 23 tests but didn't appear to be aware that a TSH of 100 meant the patient was extremely hypo. It was a very good thing I had already phoned the surgery a few days before requesting a blood test form to be left out for me as I was away from home that week and I got a blood test the same day as he told me 'I had no problems at all'. The blood test department phoned the surgery to ask why the patient wasn't prescribed as my TSH was too high and the surgery had already been notified. I then began on levothyroxine. Another long journey to recover but we can restore our health - if only doctors knew how best to restore our thyroid hormones and although thousands seem to be fine on levothyroxine, a majority cannot and do not recover on levo and I'm one of them. I think the majority on this forum cannot recover on levo.
I hope you feel better soon.
Getting the NDT dosage right
Armour update - 3 years on
Post thyroidectomy care
What Thyroid Medication to order
