I have Hashi's and worsening hypothyroid. Have all the symptoms including now runny noise, watery eyes, heartburn, poor stomach, bloating, loss of outer eyebrows, thinning hair, fat around abdomen, no energy, brain fog.....
I saw my endo today (had her for 1 year so far...) and she said my blood work is fine.....I am on 25 Synthroid and 5 Cytomel - I asked for an increase.
I am aware that the results should be in the top 1/3 of the range - not the very bottom of the bottom of the range........
TSH - 0.95 (0.35-5.00) - on some Cytomel
Free T4 - 15 (11-23)
Free T3 - 3.8 (3.4-5.9)
Q - What the heck is the problem with my endo - anyone who Googles can see my results are too low.
Is this stupid response normal in the endo world?
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I would like to get a different endo - but in Canada there are no private doctors, no available family doctors etc, Thinking of going to the US.
Am I wrong?
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The short answer is: yes. Perfectly normal for them. But, as Morticia Adams says, what's 'normal' for the spider, is chaos for the fly. We hypos, unfortunately, are the flies.
I don't know about Canada, but in most countries, I think, endos are really just glorified diabetes 'specialists' (although some diabetics would question that!). They have no more training in thyroid than the average GP. They just think they know it all because they have no idea how much there is to know. In med school they are taught that hypo is 'easy to diagnose, easy to treat', and if the patient still claims to be sick, s/he must be mentally unsound and in need of a psychiatrist.
There are forum members much more experienced and knowledgeable than me but you are on a tiny dose of thyroid hormones. 25mcg is the dose for a child and even allowing for the fact T3 is said to be 3 times as potent as T4 by my maths you are on around 40mcg of thyroid hormone a day, which is miniscule. I'm guessing your Endo does by TSH, whilst ignoring your very low FT3. I dont think she's going to make you well.
Dearest. Thank you for taking time from your precious day to post to me.
I am so frustrated and because of Canada's totally government controlled health care, there are no private doctors. I am going to a Nurse PR actioner to see if she will prescribe a real dose for my thyroid condition.
I feel your pain. I also live in Ontario and is experiencing the same malarkey. My Endo is clearly a diabetes specialist and knows next to nothing about thyroid disease. He is fixated on my tsh as well. Over the past couple of years I have used the knowledge I gained from this precious site to argue my case with confidence. He now gives me the flexibility to tweak my doses but does nifty follow through with testing my levels after each change. It has become a problem for me because I really don’t know what works well for me, it’s all a guessing game. It’s even worse for me because I had total thyroidectomy. I agree with you that it’s to our detriment that we have this government controlled health care that limits us from seeking alternative care. Had it not been for this forum I would have been bedridden by now.
If I may ask, why did you start Cytomel on such low dose of T4? It would have been better to maximize your Levo before starting Cytomel. I’m on NDT + a small dose of levo because my conversion was very poor. I tried Cytomel but it was too powerful for me, even on a small dose. NDT now works fine but I still have hypo symptoms because the Endo refuses to do the appropriate testing with dose changes. I’m left to struggle on my own.
It would be nice if we had private labs like in the U.K.
I hope you’ll be able to get the correct dose that will keep you healthy.
Good luck, let’s hope that the powers that be make the necessary change to our health care and keep us healthy.
We do have private labs in Ontario, not private doctors, but private labs where we can pay to have specific blood work done. Here's a link to one, and I've copied the thyroid options page. bloodtestscanada.com/collec...
Thank you raglansleeve, I will definite check out that link. So, will I need a requisition from the doctor to have bloods drawn, or do I just ask for what bloods I need to have them take? Thank you, this is why this forum is so amazing!
They have their own doctors, who provide the requisitions, you just have to choose which tests you want and pay for them. You add them to your cart first, just like online shopping for other things. If you go to their home page, it explains it all. You do have to pay out of pocket though, and they're not cheap. It is an option though, if you want to test more than your own GP or endo does.
I can imagine it would be expensive. As I’m retired, funds are not always easy to come by. I will have to keep working on my Endo hoping one day he’ll have a change of heart. I’ve often add more tests to the requisition he gives me. He hasn’t addressed it but I’m sure he will eventually.
Synthroid is covered on my seniors plan, but not NDT. Synthroid is less than $10 for 3 months but the NDT is ver expensive, that’s why the government does not cover it.
Rosebud1955. Your post is 100% spot on. I am using the 25mg Synthroid from the endo (the max she would allow 🥶🥶) and the Cytomel from my nurse practitioner in Oshawa. I have a very bad stomach due to gluten, candida, stress - so conversion is an issue.
Q - does the desiccated work for you? Is it better than the Synthroid?
The NDT is perfect for me, I can say this because I was once on Synthroid + cytomel. It was awful for me, even on a small dose of 5mg. It shot up my blood pressure and caused sever head pressure even though my F t3 was at the bottom of the range. My only problem now is that the disgruntled endo will not do a retesting after dose changes. I think he’s annoyed with me because I had to challenge him in my early visits, I still challenge him when he gets fixated on my tsh (0.01). I had to tell him to stop discussing the issues of the suppressed tsh because I don’t care about it. He was not happy!
I have no thyroid so I refuse to let him mess with my dose. I stay with him because he allows me to tweak my dose based on how I feel. I would be afraid to try someone else, in case I end up with a stubborn jackass. I think they’re all the same idiots.
I live in Toronto and will definitely try someone from raglansleeve link. What an atrocity, we should not be facing these issues while we’re fighting to stay well. Diabetics don’t seem to face the problems that we’re forced to endure. I’ve lost faith in the medical profession. They’re not honouring the oat that they too. ( DO NO HARM). They’re killing us slowly, physically and emotionally.
Sorry for the rant, I’m so angry! You have nothing to loose trying the NDT, it could be a life changer. It more gentle on our bodies. I’m getting ready to drop the 25mcg of Synthroid and increase my NDT. I take the Erfa brand and it works well.
I didn’t know that the nurse practitioner could order thyroid hormone. I’m in Toronto.
Good luck on your journey to good thyroid health. If you decide to try the NDT please let me know how you get on with it.
The nurse practitioner can order blood tests paid by OHIP!, prescribe big pharma or bioidentical thyroid and hormones. That is what I do. Been a patient for 13 years.
I was forced to suspend using their bioidentical stuff and forced to use synthroid etc because my family doctor found out and threatened to let me go - but now I have a new family doctor (thank the lord) and he is ok with bioidenticals. So can go back on Desiccated and bio estrogen/progest/testosterone.
I am on NDT for 2 days, I feel much better than when I was on synthroid and cytomel. Wow, like you said, not as harsh.!!!!!
You said that your insurance would not cover the NDT, by chance are you covered by the federal retired employee health plan? I am and they changed on July 1 and do not cover bioidentical hormones or NDT.
I am covered by seniors plan. ( Ontario Drug Benefit) I guess every province has its own plan. They did not cover me when I was on Cytomel. I guess it’s a small cost in attempt to regain some sort of normal life, especially being without a thyroid. It does add up over time though.
All the best as you continue your journey on NDT. The only downside is that it can be difficult to adjust doses because it’s a combo of T3 & T4. My Endo added a small amount of levo to the NDT.
I don't know where you are in Ontario, but you can ask to see another endo. There's a thyroid clinic in west Toronto/Etobicoke/Mississauga area. I am not exactly sure right now of the address but all they specialize in is thyroid.
Oh I know about that place, it is in Oakville. I was referred there by a previous family doctor.
I was fired by the endo for questioning him on why he refused to test for free t3 and t4. Yes, he dropped me. He would not even test for antibodies.
Frankly the Ontario medical system is pathetic.
My next stop is to check out Atlanta - it is a center for thyroid care in the US. Google Atlanta thyroid, it is amazing the hospital, doctors specializing on this. I will get a doctor appointment. Then I will submit my plan to OHIP for coverage - of course I will threaten them with going to the media if they deny me.
They have no idea how to calibrate T4 and T3 doses. I had an endo at WCH who reduced the T4 and added T3 so I ended up hypo both for fT4 and fT3. It was a disaster. Aside from everything else, my hair fell out.
Nowadays I have a new GP (arranged marriage, unhappy situation) but at least when I tell her that fT3 is important, she orders the test.
The center you reference in Atlanta is a thyroid surgical center, not general thyroid care. Have you tried joining/posting on facebook.com/groups/thyroid...? Their advice, similar to here, is pretty straight forward and valid. Group members can get a 20% discount on private lab tests. (Canadian)
My “doctor” here in the US is an NP. I’ve had to teach her which tests to order and how to order my meds but she, and other NP’s I’ve worked with are much more interested in collaborating than most doctors I’ve worked with.
Thanks so much for your post. I appreciate it. Will do the FB approach. Your medical system in the US is far superior. Canada has the most expensive with the worst outcomes of any medical system in the western G20.
Medicine in the US is great if you have the money to access it. I pay about a quarter of my retirement income for health insurance and still have to order meds from Canada my insurance won’t pay for. Many in the US can’t afford insurance and have no access to health care. I really can’t “afford” my insurance but without it I couldn’t have been able to get my cancer care. We’re a nation of haves and have nots.
Hello, fellow Canuck! Yes, this stupid response is normal in the endo world. I am in Manitoba and I have heard the most hairbrained things from endos. My favourite: "T3 has no function." I have two friends who are doctors, one in the States and one in Germany. So sometimes I tell them what an endo said, but pretend it is what I think and let them correct me. It is so much fun!
The main problem is the shortage of doctors (Manitoba has the least of them), so it is close to impossible to switch. And even then you are likely to get more of the same. Those who have enough money laying around go to the States, where they can doctor hop until they find the one. I was extremely lucky to find a nurse practitioner through this forum. I have to pay for every consultation, but as long as I can do that, I won't complain. It was incredible luck, though. Previously I had a very good endo as well (again incredible lucky circumstances) but she was "observed" by the College of Physicians and closed her practice to go to the States (where all our best doctors end up eventually). So, I can only hope that somehow you will find a way out of that schlamassel. I have tried to present research. I have tried to play dumb. I have tried to fight. I have tried to be submissive (or at least pretend). Nothing works. Now I'm just me and take the wreathe. Or stay away as much as possible. As the saying goes: You can take the doctor to knowledge but you can not make them think. I assume I would have an easier time with the camel (You can take the camel to the water, but can not make it drink).
From the very bottom of my heart I hope you will find a knowledgeable health care provider of any stripe. I feel with you. This system is so broken, but there are still little patches of sanity here and there. I hope you'll find one. ❤️
I sm sorry to hear about your issues with the medical system in Canada, I live in the States and they people here want your medical system,, I don’t understand why when we now have the freedom to go anywhere for help all private thorough insurance. Although I do admit the Endocrinologists tend to have the same lack of understanding about thyroid issues as the rest of the world.
Yes, overall there is especially the financial aspect of the single payer system that is attractive. The fact that American doctors have the same education as their Canadian colleagues causes the same problems for the patients. If on top of that you have to shell out money to not only not being helped but made worse, that is despicable. Our system can make it much more difficult to find a "good" doctor or get important tests by virtue of big brother curbing those things. In the States it could be lack of money doing the same. It is the system that is rotten on both sides of the border. Again, in the States you can get everything (and more) done if you have the money, which leaves whole groups out of the health care system or without badly needed medication. There are huge drawbacks to both systems (and, of course also advantages). If you want a good laugh on a serious subject, read "Lucky Dog" by Sarah Boston DVM. She is a Canadian veterinary oncologist, who had visible thyroid cancer and got nowhere in the Canadian system. She was even told that because she is an oncologist, she sees cancer everywhere. She then got a teaching position at a university in the States (with the insurance perks to go with it) and things were taken care of in lightning speed. Her sense of humour is amazing. I laughed and knotted along throughout her description of her experience with the medical system. She also compares that to veterinary medicine. I often think that I would be better off if I could consult a veterinarian.
Hi Sandalsforever. Endos seem to be totally ignorant of thyroid issues, despite their training. I posted earlier that Atlanta is a hub for thyroid care in the US - I am contemplating getting a doctor there and paying for it.
Americans and Canadians are equally manipulated about each others care. Canadians have been told the US care is awful and discriminatory etc, many Canadians believe their health care is "free", OMG. In Ontario health care is 46% of the provincial budget! Americans have been told Canadian medicine is "free", a total lie.
We can't go anywhere, we can only go to the oroviders in the insurance network. If you're traveling and get sick and have to use neducal care that's out of network, it won't be covered.
Our medical system is good, but we need to have the opportunity to see private doctors and have private tests if we wish to do so. (MRI, CT scans, ultrasounds) our wait list for MRI could be as long as 6 months. Not good at all
I guess I've been relatively fortunate. I injured my lumbars which are already not great (stenosis). Couldn't walk...left leg... I don't possess a vocabulary to do justice to the agony. But I managed to see a sports medicine doc and a pain management doc, both in November (traumatic injury manifested on sept 11) I got pain meds by sept 15th. Nerve conduction testing was done in the beginning of December and the MRI happened at 1 a.m. today. Sports medicine doc got me the appointment for the nerve conduction 3 weeks and the MRI 6 weeks.
If I would be a sports celebrity, the Prime minister, the provincial premier, or some other nefariously famous person I'd have gotten the MRI on September 11.
I knew what I did to cause the problem but wow it was really frightening. I've injured myself all over during my life but never to the point where I was unable to walk.
Anyway, right now I can go on 4 km walks, climb hills and stairs. I can feel the leg get tired after 2 km but I keep going. We went to Costco and now my boyfriend also has TRAX to put on his boots so the snow and whatever else winter throws at us won't prevent us from getting out walking. I am also able to stand and walk on tiptoes which was absolutely impossible the first 2 months.
I want to buy a punching bag. One with a stand and not the kind that is attached to the wall. Ladies are punching! Great for upper body workout and cardio. That's next. After not being able to be active for 2 months, my body needs rehab. Gotta get in shape for gardening season.
I too have a nurse practitioner who is most agreeable to provide thyroid meds. The retired family doctor who started this bioidentical health practice was also "observed" by the communist College of Physicians in Ontario - so he closed it up for a while and then recruited the nurse practitioner. I am kicking the endo to the curb - she is totally incompetent.
I am going to try dessicated thyroid and see how that works.
Hi buddy99, I agree with everything you said, it’s difficult to find one that is able to think outside the box. For this reason, I’m hanging on to the one I have, he will do any bloods that I request but only on my biannual visits- nothing in between. He listens and cooperates because I’m like a thorn in his side. He just tolerates me but I think he deslikes me with a passion. As long as I get what I want, I couldn’t care less. They all have big egos! Great injustice to all of us. Let’s all continue to stand our grounds and fight for our health!
My endo (2013-2022) fired me. She tried on a number of occasions but I objected due to the fact that my GP was useless. Then we had the Covid idiocy, phone appointments, and I guess because it wasn't face to face, she found it easier to just not give me another appointment. Just sayin' because if your endo finds you frustrating, he might give you the boot just like mine did.
Dang it! That is always another threat hanging over us; the firing of patients who are not submissive enough. Doctors have too much power and with taking more and more other options away, they are gaining increasingly more of it. It's pretty scary to even think about.
Oh yeah. My GP retired last year and I was not notified. The office manager claimed that all patients with an email address were sent an email and those without were sent a letter. I got nothing. I was supremely unimpressed. Ironic that the office manager and I exchange emails for when I'd need an appointment...but there you have it. The communications snafus get even better. Read on.
I ended up with a new GP that is like an arranged marriage. I'd rather be seen by another of the GPs in the practice with whom I have had appointments in the past because she would do locum work when my GP was on vacation. Nope. (People apparently don't like this new GP I'm stuck with. She used to work at Michael Garron so being an eternal optimist, unless there is a huge financial incentive for her to stay where she is currently, I have some hope she will leave for greener pastures. It is quite amusing in the worst possible way that she claims to be too busy to notify me of test results that are 'normal' but if I phone for an appointment for the next day she has at least 10 open time slots.... I detest liars. We use an email platform. My mother who is 88 years old goes to a GP in the same group. Her GP emailed me my mother's blood test results by error. We have the same name. Nota bene: don't name your children after yourself. I get all sorts of messages from UHN and whatnot for her appointments...... When my father died, the president of the University of Toronto mailed a condolence letter to me. So bizarre when they would have had my parents' address so why me? But we do have different birthdates and OHIP numbers. Now I know my mother's TSH, fT4 and fT3 are excellent. She's super healthy based on her blood results at least. She will probably outlive me. However, it is a serious privacy breech. Doctors don't seem to be very good on double checking before they push the send button. Maybe she got my doctor's retirement notification. The privacy goes in one direction only. Patients can't access someone elses health records but doctors and hospital staff can and do screw up. Often. I kept wondering why I was repeatedly booted off the platform. Now I know why. Whoever maintains the site couldn't wrap their tiny head around the fact that two people can have the same name. Or it was done automatically as in there was a redundancy of one person having two email addresses. I have yet to 'deal' with this but I will when I think the time is right.)
The new GP and I had a very forthright conversation about when our relationship went off the rails. My words. I think in her previous life she must have been a social worker based on how she expresses herself. But I have not been able to find any extra degrees she may have aside from M.D. She is a McMaster grad and they like to accept students who have past experience in other fields. She kept telling me that if I am very unhappy and don't trust her then I can find someone else. Sure I can. Age 66 with a file that is two inches thick..... I told her that she has a tenuous grip on reality if she entertains the notion that someone like me can just up sticks and present myself elsewhere. She's stuck with me because I'm not obnoxious. Just I stick to my guns.
I don't think I'm ranting. Am I?
Just my own experience of how dysfunctional the entire system has become over the years thanks to the blind reliance on technology.
Did you know that the liberals have a big bill in 1st reading to cancel all naturopathic services and end all supplements ie only big pharma? Already Canada Life has ended paying for bioidentical hormones (I now have to pay directly).
Please pass this along, Canada is in dire straits.
I didn't know that about naturopath services. Do you mean that they won't be covered by insurance or they will be entirely banned? By supplements, does that mean vitamins too?
I've never had insurance. Always paid for HRT out of pocket. Same with everything else.
Now that I'm over 65, the seniors drug benefit covers cheap drugs like Synthroid.
Anything that costs anything...fuggedaboudit.
Recently I purchased Carlson Solar D Gems 6,000 IU from iHerb. A bit strange seeing as how all the supplement sellers in the USA stopped shipping anything over 2,000 IU to Canada. Because, yanno, Health Canada cares about us. The Health Canada website was changed not too long ago to inform that up to 4,000 IU per day is sometimes necessary and safe.... woohoo.
Big Pharma has already made a foray into supplements (for various reasons). They will not let the government kill that cash cow, as far as I'm concerned. Naturopaths have fought many a battle against conventional medicine trying to sink them in the past. Their success all depends on economic interests of the big players, whoever they may be, and whose "recommendations" the government follows. I don't think I have an overview of all the influences on government and which one beats out the other. I just feel that more and more options are being taken away and we get herded into one direction. And to get back to the original topic; this situation must have a detrimental effect on how medicine is taught, how doctors see patients and what they can and can not prescribe. We rail against the doctors, but I really think that they are as much victims of the systems as patients are. Polarization is a great strategy to divert focus from what is the real issue. While two (or more) parties are at each other's throats, the third party can make changes unobserved. And when the two parties are done fighting they wake up to a reality different from when the fight started. Surprise! There is a lot of politics in healthcare, which does not necessarily mean that this is all about the wellbeing of "the people". My feeling is that it is not. My hope is that "the people" will find ways around any nonsense and stick together to help each other. Mostly we are a resilient bunch.
Outstanding post. Yes, the federal government in canada is going to make naturopathic and all supplements illegal and not available. If you google, there are a few articles out there. It is all hush, hush, and yes, divide and ensure fighting lets the real enemy to work under the radar.........................
Hi gabkad, I don’t think they’re allowed to fire us just like that. They’re obligated to refer you to another Endo. It wouldn’t be a good idea because they will only pass on info and do a smear campaign. That’s how they operate, we can never win!
Not if their opinion is that you don't need an endo which was always her position.
I went to have a consult with a young endo guy last year who told me that only TSH matters and fT4 and fT3 was worthless. Things aren't getting any better.
To paraphrase Jane Austen " it is a truth universally acknowledged that a hypothyroid woman, often without possession of a good fortune, must be in want of a good Endo"
I agree with Batty in the U.S. The highest dose of cytomel I can get prescribed is 5 mcgs. I need to take 50 mcgs of T3! Doctors look at TSH as the gold standard but which should be 02.0 or below and yours is almost perfect although many functional experts often agree on 01.6. The U.S. may have changed that high optimal down to 4.0 but we know people can be very ill at that.
Yes they do love the TSH … My health is dire because of this half wit way of dealing with me…. If I could go back in time I would never ever considered a thyroidectomy… its been a lonely nightmare.
Unless you had thyroid cancer specifically I would always advise trying anything else before a thyrodectomy. My son became hypo while working on his PhD and very overactive. He used blockers for a couple of years and now doesn't take anything although I thought he should take some T3. No thyroidectomy.
If you can find posts by Clutter, she was here for a few years and had excellent knowledge for treating patients who had thyroidectomies. It's still a good idea to take both T4 and T3 although I only take T3 myself.
Oh, sorry, but then you should be receiving the best treatment possible for your hypothyroidism. I listened to a presentation by Pamela W. Smith yesterday and was very impressed with her research. She has a written many books and specifically mentions how she treats patients who have cancer. You might want to look her up.
Same here! I had a small papillary cancer and was ver symptomatic. The thyroid Was so calcified, it was imbedded in my neck, they left me with permanent nerve damage to my larynx and covered it up, stating I had scar tissues. I wish I hadn’t consented to the surgery
I think your post is a salutary lesson for the UK. Whilst we have the option to use private endocrinologists, neither NHS nor private exactly show themselves in the best possible light. It would appear that our surgeons on the whole still have a very good reputation. However the NHS is wrongly named. No doctors in the UK seem to understand the meaning of the word ‘health’, therefore the Health portion of the NHS title is a misnomer. In fact it’s no longer a Service either with the scrambling to get any attention. Even the word National is incorrect, as anybody suffering from a postcode lottery will tell you.
If you have a chronic illness (hypothyroidism) you mean nothing to doctors. It’s a case of finding the best way of shelling out treatment as efficiently (as they see it) by using the tick box system.
So whilst I am a great fan of the NHS, I am sorry to observe that it’s almost a crime in some people’s mind to criticise it. Whilst private may be no better, we should have access to an alternative until the NHS catches up with its very old guidelines. In the case of treatment of hypothyroidism, the treatment has not been truly updated for at least thirty five years, no matter the strides made in research.
Keep our options open.
Power corrupts and absolute power corrupts absolutely.
We are in danger from our NHS and ideally we do not want to be left entirely without a choice of treatment. No wonder Canadians are concerned about their lack of choice.
It even gets worse in Canada. The liberal party in power has a bill ready to pass to Cancel all supplements and naturopathic services - I mean end them as choice. There is a huge uprising of Compounding Pharmacies, producers of supplements and little people like me.
The liberals only want big pharma. I am already now feeling the effect as my government health care for retirees removed coverage on my bioidentical hormones. Canada is an utter disaster.
I agree with you 100%. I worked in health care for 33 years and saw soooo much corruption. Now my seniors drug plan covers next to nothing. I’m constantly paying out of pocket for my drugs - even my NDT is not covered although it has been documented that I have conversion issues and need T3 to survive. WHAT A MESS! We surely need more options!
I think endos are also useless in the UK too. I was late diagnosed with Conns disease (adrenals) they haven't a clue on how to manage my condition either,so poor patient is left suffering!Is there no private health care in Canada?
No official private healthcare in Canada, but the odd loophole or defiance, if you want to call it that, when private clinics spring up in a certain province and just move around the corner before government catches on. There are also medical doctors getting a degree in naturopathy and opening naturopathic practices (and most likely lose their medical license) . However they are limited in what they can prescribe. As far as I know that depends on which province they are practicing in. In Canada the provinces have the primary jurisdiction over health care. As a consequence, provincial governments are mainly responsible for the financing and administering of public health care. So each province has there own rules. I had found a really good doctor in the neighbouring province and flew out a couple of times to see him before my province put a stop to that. If you can pay for it, you can also cross into the States. However, their doctors are not any better and you best go there only if the doctor you see is highly recommended by somebody who has the same health issue and found that specific doctor to be very knowledgeable, otherwise it can get quite expensive circling through a great number of doctors till you find the right one. I know a few people who have found the right doctor in the States when they could find no help in Canada. So there are options, but really not much help to find them. The patients have to find that information themselves.
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