I’m forever grateful that I accidentally bumped into this forum. I don’t know if my life would be worth living! My GP and endocrinologist made me so I’ll and I came close to giving up on life. I’m still struggling, but much improved. I now suffer from severe neuralgia in both feet, very stiff muscles when getting up from a sitting position. The worse is the severe ‘post nasal drip’ 24/7. The doctors are telling me it’s GERD but no treatment works. I’m afraid to go to bed at nights, in fear of choking. The thick secretions collect in my throat almost to the point of suffocating. This problem started at the time of my thyroid diagnosis.
I had total thyroidectomy in 2017 for thyroid cancer, have never been well since. I have learned so much from all the wonderful people on this site. Unfortunately I’m not able to get the uneducated Endos & G.P to listen. As I live in Canada, I’m not as fortunate as you folks living in Britain. We don’t have two tier medicine, so not able to get private labs nor doctors.
I do have a question, does anyone know if there is a link between thyroid disease and post nasal drip? Does anyone know of any treatment for post nasal drip? My quality of life has diminished because of it.
I don’t post very often, but I read all the posts and suggestions like I read my bible. I look forward to reading all the posts every night, trying to learn as much as I can.
My sleep is poor and I don’t have much motivation to do anything. Endo thinks my medication is sufficient and I’m tired of fighting with him. I’m sure he thinks I’m a hypochondriac and a nutcase so I avoid him like the plague. I’m due for labs and follow up with him at the end of this month so I will post my labs then. I presently take 75 mg. Efra thyroid and 25 mcg Synthroid, he tells me that’s equivalent to 150 mcg levo, is that correct? I don’t trust him!! My tsh has been 0.01 since I started on thyroid hormone, so that’s all he really focus on. I was ill for years prior to my diagnosis, also has chronic Lyme disease.
Sorry for such a lengthy post but I’m feeling defeated and needed to vent.
Thanks to anyone who takes the time to read.
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Rosebud1955
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Thank you for taking the time to reply! I’m not gluten free, I have tried but falls off the cliff regularly. I also try to be dairy free but the same happens. Just no mentally strong enough, not an excuse but I really try. I don’t split my NDT, I tried initially but found it really difficult as I take too many supplements. I have chronic Lyme disease, so need to take a lot of supplements. My vitamins were optimal when last checked 6 months ago. I take vitamin D3/M2k 1000units as maintenance, Thorne basic vitamin B complex, cod liver oil, selenium 100, magnesium glycine 200 elemental, along with several other supplements for my chronic Lyme disease. My B12 was at the very top of range but I continue with my B complex. Yes, I get my vitamins tested with each endo visit every 6 months. I will post my labs after my Endo visit at the end of the month.
So sorry you're not being heard. If there are no private drs or labs in Canada, can you go to the states or Mexico and see a private thyroid dr there? A yearly trip or twice yearly for blood tests might be enough for a dr to treat you.
My experiences are that if my thyroid is off so is everything else. What else do they test for? Can you upload your recent test results, please?
If you can't travel...Please tell your drs that you are NOT a basket case. You know your body and don't feel well and you would appreciate that they understand that a one size treatment does not suit everyone. You respect their years of education and their dedication to their work...please respect my symptoms and this is my body and I know when I'm not well
Modern medicine is a called Medical practice because it's not perfect.... Take great care of yourself and complain and keep complaining politely until they actually listen and hear you.
Thanks for taking the time to read my post. I think I might not have explained my situation properly. I have a Endo who is willing to prescribe what ever thyroid hormone that I need, he’s just not very smart in interpreting the lab results. In future I will continue to allow him to write my prescriptions and come to this forum to help me tweak my dose as necessary. He will order Ft3 + Ft4 but continues to obsess about my suppressed tsh. He just acts as if I’m a liability and rushes my appointment time. That makes me feel uneasy as if I’m a hypochondriac. I had to tell him that thyroid hormone is not cocaine. I often feel belittled after leaving his office. I will take your advice and keep complaining until I feel well.
I don't know how Canadian healthcare works but we have the same crap medics that you have, they're everywhere unfortunately. Which is why so many of us in the UK struggle to get well and have to pay for private doctors and blood tests.
I haven't anything useful to add really except to say as the actor with Parkinsons Michael J Fox once did "listen to your patient, they are the expert on their own condition".
You know how you feel, what your body is telling you. And you know when its not right. I don't care if doctors dont have the skill or knowledge to diagnose you, its a them problem. However don't blame the patient for your medical shortcomings. And dont fob them off with anxiety or depression meds.
Are you dairy free? Dairy causes me severe joint pain in my feet, especially when waking or after inactivity. Makes it hard to walk. For me, being dairy free completely eliminates any joint pain.
Thank you for your advice. I’m trying to remove dairy from my diet but fall off the cliff very often. I replace almond milk with my regular milk, but end up eating cheese and other milk products regularly. Just not mentally strong at the moment to follow any regime. I agree that dairy could be a part of the problem because I get excessive mucous after ingesting same. Are there tests to rule out dairy intolerance? I’m now awaiting an upper endoscopy to try to get to the root of my problems. So frustrated.
Could you throw out your dairy products, replace them with vegan versions, and see how you feel after a week? You might notice such a difference that that one week becomes two and so on. I really think cutting out dairy has a strong chance of helping you. Good luck!
Thanks! will try. It’s the hidden dairy in items like cakes, bread. When I get stressed out with the constant mucous, I tend to go to comfort foods, chocolate is one of them. I plan to start over following this long weekend. Will definitely try my best.
We have vegan chocolate in the UK, maybe its available in Canada as well. I've never tried it so can't tell you what it tastes like but if its ok then you dont have to give up a treat. Just switch over.
Thank you Zazbag, I will make every effort to giving up dairy and going gluten free. However difficult it is, I will make the effort so as to improve my health.
Do you get Free T3 tested along with TSH and Free T4? It is often low in people with no thyroid. In healthy people the thyroid produces approx 20% of the body's T3 production. That's an average - it could be higher or lower.
Low T3 can cause plantar fasciitis. This may be what you have. It's mentioned on the forum quite often. I used to get it. It would hurt like crazy to put my feet to the floor when I first got out of bed in the morning, and when I went downstairs for the first time each day my ankles wouldn't bend. Both of these things would make it difficult and painful to walk. The pain and movement problems would normally wear off in less than an hour - until the next day when it would happen again. Getting sufficient thyroid hormones, including T3, made the problem vanish fairly quickly. Doctors (naturally) prescribe exercise because it costs them nothing. It certainly didn't work for me.
very stiff muscles when getting up from a sitting position
My first thought with stiff muscles would be low vitamin D. Have you ever had it tested? If yes what was the result, the reference range and the units of measurement?
The worse is the severe ‘post nasal drip’ 24/7.
This does get mentioned on the forum from time to time. To find posts on the subject you would be better to use a search engine, and do a site-specific search using this search string :
The Healthunlocked search is extremely poor and doesn't work how you would expect for searching phrases so it is pointless to use it.
I have post-nasal drip too, but I've always blamed my long smoking history (I stopped over a decade ago) rather than my thyroid, so I've never really investigated it. The only things I can think of other than smoking are sinus infections or lung infections.
Do you think that the problem is nose, sinus, or lung-related?
...
If you think it is your nose or sinuses you could try nasal and sinus rinsing with saline solution. The "big name" in this is NeilMed and their products aren't cheap. Never use plain water for nasal/sinus washing - it would sting like crazy. Saline solution is much more pleasant to use (if flushing out your nose and sinuses can ever be described as 'pleasant').
I have some instructions for cleaning out the nose and sinuses that I got from an ENT doctor.
Sodium Bicarbonate Saline Douche
Nasal Douche and Gargle
Quarter (1/4) teaspoon sodium bicarbonate
Quarter (1/4) teaspoon salt
Quarter (1/4) pint water at body temperature - previously boiled and cooled
Mix up solution fresh each time and sniff it up until the nose feels clearer, gargle with the remainder.
If cleaning out the nose and sinuses doesn't help, or you don't want to try it (and who could blame you?), or you think the gunge you are getting might be coming from the lungs the only suggestion I can think of is a nebuliser which uses saline solution in ampoules to produce a "steam" - which isn't hot - to breathe in. I bought a nebuliser this year because my lungs have not recovered completely from having Covid last year (probably because I'm an ex-smoker), and its been wonderful for helping my lungs to feel better. What I bought is :
Having told you all this, it might have nothing to do with your sinuses or lungs, and may be caused by low thyroid hormones.
I presently take 75 mg. Efra thyroid and 25 mcg Synthroid, he tells me that’s equivalent to 150 mcg levo, is that correct?
I don't know the advertised T4 and T3 amounts in Erfa Thyroid. I was under the impression that a lot of people thought the product no longer worked for them. The company was sold in the last year or two.
The company moved production to a new factory in Spain a few years ago which is when it started to lose favour with patients.
Much of the world's thyroid powder came from China, but their pigs have been suffering from African Swine Fever and millions of their pigs have been slaughtered in an attempt to stop the disease spreading.
So, I'm not sure where thyroid powder comes from now but there seems to be a global problem with NDT and it could be the new sources of thyroid powder that is changing things. I'm not guaranteeing my info is 100% accurate. I've never used Erfa myself.
The STTM website is very scathing about Erfa these days and doesn't even give the T4 and T3 levels in the product. But if I use the standard amounts of T4 and T3 in NDT...
The standard T4 and T3 levels in 1 grain (60mg) of NDT contain .038 mg (or 38 mcg) of T4 and 9 mcg of T3.
Since you are taking 75mg this would mean it contains :
T4 : 38 x 1.25 = 47.5 mcg
T3 : 9 x 1.25 = 11.25 mcg
T3 is considered (by patients) to be 3 - 4 times as potent as T4.
So, 11.25 mcg T3 is equivalent to between 33.75 and 45 mcg T4. With the addition of the 47.5mcg T4 already in the 75mcg Erfa, this means that the total T4 equivalent of your 75mcg Erfa is: (33.75 + 47.5) - (45 + 47.5) mcg T4 i.e. between 81.25 and 92.5 mcg T4.
Add in the 25 mcg Synthroid and you end up with a grand total of :
Between 106.25mcg T4 and 117.5 mcg T4, depending on whether T3 is 3 or 4 times as potent as T4.
So, for someone with no thyroid you are on quite a low dose in total.
The problem you have is that doctors think T3 is practically explosive and is much more potent than the 3 or 4 times I've used for my calculations. They really do believe that T3 is dangerous, despite the fact that every single person on the planet has T3 flowing through their veins.
I would suggest that you have three options :
1) Ask for a different NDT product
or
2) Ask for separate Levo and T3 to be prescribed. I don't know the attitude to T3 in Canada, so I don't know if what I've suggested is even possible.
or
3) You buy thyroid hormones online and treat yourself, if this is legal in Canada.
...
I've already mentioned vitamin D. Have you ever had Vitamin B12, folate, and ferritin tested? If yes, what were the results, reference ranges and units of measurement?
Thank you for such detailed response. Will take some time to re-read all your suggestions. I bought some bottles of saline solutions and plan to try sinus rinses. To be honest, I think my problem is more than the sinuses. Visited 5 ENT doctors with no real solutions. One even had the nerve to mention menopause, what a dilemma with the medical profession. The treatment they offer to female patients is disgusting. Depression and anxiety is also their ‘go to’ diagnosis. I’m really afraid of them. I think I might ask for a switch to Levo + cytomel (t3). I weigh 170 lbs so I think I might be under medicated.
Menopause, depression and anxiety get trotted out to female patients in the UK all the time too. The only time doctors can't get away with that is when the problem is visible.
I do my best to fix as many health problems as I can by myself without involving doctors, but obviously there are limits on that.
I don't expect the medical profession to change in my lifetime. They've been assuming that women are hysterical for the last 2000 years, since the time of the Ancient Greeks.
Hello and thanks for all the wonderful suggestions. We’re not allowed to buy thyroid hormones in Canada. It’s not really a problem because Endos will prescribe NDT and T3. They just aren’t smart when it comes to giving advice and adjusting doses. They’re also reluctant to do full thyroid panels and vitamin testing, so that becomes a problem since we don’t have private labs. I did try Levo + t3 before but it failed because the Endo didn’t adjust the dosing properly. He had me increasing too rapidly and it interfered with my blood and made me very scared. I felt better on Levo + cytomel and should have stayed on it. I will ask him to let me try again. I’m afraid he won’t know how to do the change over from NDT to Levo + t3.
Regarding the sinuses, I strongly believe that it’s a thyroid hormone problem. I will definitely try the bicarbonate and saline. When you say sniff the solution, are you saying I should use the bottle to squeeze the solution up one nostril? ( excuse my ignorance!).
Sorry I don’t have my most recent labs handy but I’m sure my vitamins are all optimal because I keep an eye on those. Everything is at the very top of range. I have labs coming up at the end of the month so I will post those. That’s when I’ll ask the Endo to switch from NDT to Levo + t3. My B12 was above range the last time it was checked. I supplement with Thorne basic B complex, my vitamin was 3/4 through range and I take a maintenance dose of 1000u daily.
Thanks for all the good advice, I will post the correct numbers and ranges after the next lad.
this response is for Humanbean, sorry I’m a bit overwhelmed
It's easy to feel overwhelmed when you don't feel well. Many here can attest to that. I'll tag humanbean so she's sure to see your response. Take care.
getting the thyroid hormones is definitely not a problem. My Endo is somewhat cooperate and will switch to whatever I want. He just doesn’t understand that every individual thyroid patient is unique. Six months after my thyroidectomy he told me that I should have been back to normal. At the time my FT4 was at the top of the range and my Ft3 was way below the bottom of the range, tsh was 0.01 so he assumed I was over medicated. It was at that point I started searching the internet and discovered thyroid UK.He stupidly decreased my levo from 125mcg to 112. I became a couch potato for months following that decrease. I’m 5 years into this journey and is at a dead end street. At that point I had gained enough knowledge from this site and began challenging him, that’s when he became flexible and added Cytomel. My blood pressure began to rise so I got scared and asked for NDT. I think he started me at a higher dose too quickly and scared me off. I would do anything to feel well again. It’s reassuring for me, knowing that I have this forum to turn to for support.
May God bless all of you for giving your time to help educate people like me, we all appreciate you so much!
Sorry to read about your struggles. Im located in Canada and was on Erfa and Synthroid until a week ago. Im currently just taking Erfa because im doing a trial run to see if it brings up my TSH levels since my doc is concerned about my low tsh. Im aware that ndt can supress tsh but im just trying to buy some time to figure out my next move.
To give you perspective before starting combo treatment i was on 75mcg of Synthroid for over a decade. On my last bloodwork I was taking 120mg of Erfa and 25mcg of Synthroid. Ill share my levels below to give you an idea on how that dosage translated in my body. All that to say that 75mg of Erfa isnt necessarily equivalent to 150 mcg of synthroid or I would be dead. On mono t4 treatment, I spent yrs on and off trying to increase my synthroid to 88mcg. Every time i would experience severe chest pain and palpitations. So i would discontinue and return to 75 mcg of Synthroid.
Im 98 pounds and im an extremely poor converer of t4 to t3. For Lab 6, I was on Erfa 95 mg and Synthroid 25 mcg for a month and then increased Erfa to 120mg plus synthroid 25 mcg and was on it for 2 weeks and then took the test. I normally wait 6 weeks for each dosage change but not this time.
Free t3 4.6 Range 3.4-5.9
Free t4 20 Range11-23
TSH .004 Range .35-5 .00
If you can afford it, try seeing a naturopath. They can prescribe ndt and order tests. I recently had a member in Tania's Canadian fb group recommended a naturopath to me.
As i was titrating down from the synthroid and increasing my erfa, i noticed that i could drop 12.5mcg f synthroid and replace it with 15mg of Erfa without any problems.
I split my dosage and have found that to be the best for me. On my last labwork i was taking :
8am Erfa 45 mg and 12.5 synthroid
12pm 15 mg of Erfa
3pm 30mg of Erfa
10pm Erfa 30 mg and synthroid 12.5mcg
****My dosage taken at 12pm and 3pm were an hour before and after eating respectively. I took supplements as well . I wasnt too concern because i was only after the t3 in the ndt during those particular doses. I made sure my 8am was 1 hour away from breakfast and 4 hours away from supplements. Likewise for the 10pm, i made sure that it was 4 hours away from food and supplements. I eat supper at 6pm and take my last supplements then.
thanks for sharing your levels with me! I weigh 173 lbs so I’m larger than you but taking a smaller dose. No wonder I feel unwell. I take my dose all at once so that could be why I’m afraid to increase my dose. The Endo suggested that I take 60Efra + 25 levo in the morning and 30 NDT in the evening. I stupidly decided to take them all together in the morning and felt uncomfortable. I take several other supplements and found it stressful to fit in the afternoon dose. That’s when I decided to drop 15 NDT and take everything together. I think my dose is too small. He told me that I would eventually need to be on 120 mgm. I must admit that my post nasal drip became severe after reducing my dose.
I live in Ontario and I do believe the naturopathic doctors cannot prescribe drugs. I will definitely check into that. The Endo I see is cooperative and will order whatever I ask for, he just doesn’t seem too smart in interpreting my results. May I ask you what Dyson is please. So you’re on 120 NDT + 12.5 levo. I’m 67 years old so age might be a problem for me. I’m told that older individuals need a lesser amount of thyroid hormone. Have you heard anything to that effect. Just curious.
I’m happy that you’re beginning to find your sweet spot. Good job for advocating for your health!
Im not sure why I wrote Dyson. Clearly my brain went out for a break or was thinking about a vacuum. I was trying to write Synthroid. Ive corrected my mistake. I was on 120mg of Erfa plus 25mcg of Synthroid when i took the test.
Im in Ontario and naturopaths are licensed to prescribe ndt here. Also a registered nurse can prescribe cytomel and synthroid. I paid out of pocket several yrs ago to see both. They both ordered bloodwork but the naturopath could only prescribe me ndt but the nurse could prescribe both.
Im on a crazy load of supplements, over 10 pills, and the thyroid dose regimen im currently on is working for me. Each dose increase took me about a week or 2 to settle in. It caused an increase in my heart rate and insomnia. I slowly changed things especially when i decided to take a nighty dose.
If youre interested in splitting your dose you can share the timing of your meals, what supplements you take and when, hopefully we can help you out. Also i found that having my nutrients optimal or closer to optimal help me tolerate the dose increases. As my vit d and ferratin improved my ability to tolerate the erfa improved. SlowDragon inspired me to split my dose. I kept on reading her profile and it gave me the courage to try. Plus i had a few exchanges with her privately and on the forum and it made me take the plunge
That’s when I decided to drop 15 NDT and take everything together.
^^^ If i were you i would add back the 15mg but take it at a later date. For example:
7 am 45mg of Erfa plus 12.5 mcg of synthroid
8am Breakfast
11am Erfa 15 mg
12pm lunch
4-5pm Erfa 30 mg and Synthroid 12.5
Supper
Yes ive read older individuals require less meds but i cant comment on how accurate it is. I really didn't do much advocating, I had a wonderful family doc who took pity on me because i was in terrible shape. My free t3 levels were below range.
To give you better perspective, below is my synthroid and erfa journey that began end of January if i recall.
Lab 1. Synthroid 75mcg (T4 only )
TSH 4.33 ( .35 -5)
Ft3 2.7 (3.4-5.9)
Ft4 21 (11-23)
Lab 2. Erfa 30 mg and Synthroid 37.5 mcg taken 4 days & 50mcg taken 3 days
TSH 5.54 (.35 -5)
Ft3 3.7 (3.4-5.9)
Ft4 18 11-23)
Lab 3. Erfa 45 mg plus Synthroid 25mcg
TSH 3.40 (.35 -5)
ft3 4.0 (3.4-5.9)
ft4: 17 ( 11-23)
Lab 4. Erfa 60mg and Synthroid 12.5
TSH 3.86 (.35 - 5)
ft3 3.7 (3.4 -5.9
ft4: 16 (11-23)
Lab 5. Erfa 75mg plus Synthroid 12.5
TSH .54 (.35- 5)
ft3 3.5 (3.4- 5.9)
ft4: 14 (11-23)
Lab 6 Erfa 95 mg and Synthroid 25 mcg for a month and then increased Erfa to 120mg plus synthroid 25 mcg and was on it for 2 weeks and then took the test.
Free t3 4.6 Range 3.4-5.9
Free t4 20 Range11-23
TSH .004 .35-5 .00
On lab 4 , my levels took a nosedive and thats when i realized that i need my free t4 to hover around midway the very minimum.
Do you mind sharing with me your endos name on here or privately? Ive never seen one prescribe ndt and im interested. You mentioned he/she was concerned with your low tsh, were they able to get over it?
Hi Imaan, not a problem sharing. I don’t really know how to PM you. If it’s ok I could just add it here. If it’s not allowed, then his name will be wiped out. So, his name is Dr. S. Orlov. A very nice man, good listener, very flexible. Initially he really messed with my dose due to my low tsh. He lowered my dose when my Ft3 was way below the lower end of range. At the time he did not do Ft3 nor FT4, he just saw my suppressed tsh. I was a very poor converter because after I insisted he did Ft3 &Ft4, my Tt4 was way over range while the Ft3 was below range. After I discovered this site and felt confident enough to challenge him politely, he became a different person. I think he’s a diabetes specialist but the most important thing is that he listens. He does care too much about the tsh anymore. He just mentions that it’s suppressed but goes on to say that if I feel well, it’s ok.So far he allowed me to try levo+ cytomel, I’m presently trying Efra. My drug plan does not cover the NDT nor the Cytomel so I pay out of pocket.
Are you in Ontario? Once he realizes that you’re knowledgeable with your thyroid journey, he’s good and respectable. He’s a young guy.
So, good luck reaching out to him, let me know how it goes.
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Help with blood results please! 
A little help please ....
A huge thank you to everyone
Advice on Recent Thyroid Labs and Which Direction to Go In
Thank you everyone
