Test results from 2020 and 2021 were 0.29, 18, 4.3 and 0.03, 15, 4.2 respectively. No significant differences from more recent test results.
She is hellbent to get my dose lowered based only on the TSH results.
To be honest, I don't even know if my TSH could get to 1.0 without entirely withdrawing the levo and then I'll end up in hospital with myxedema. When the previous endo reduced my levo to 75 mcg plus 10 mcg T3 the results were below range and the TSH after leaving me like this for six months only got to 0.64.
I saw an endo last year and have continued on the same dose. Now she's got me booked with another endo. That appointment is for May, 2025. GP claims it is not within the scope of her practice to prescribe 'such a high dose' of thyroxine and she grudgingly acquiesced to continue a new prescription for 90 tablets provided I was willing to see an endo. That was a month ago. There's not much likelihood of me seeing the new endo before this prescription runs out regardless.
As far as I can tell, this dose is, if anything, inadequate based on the fT3 and fT4 results. ECGs done twice are 'normal sinus rhythm'. Bone density was described by the tech who told me he's not supposed to tell me anything as 'high normal'. I think he felt okay about breaking the rules because the test result was excellent.
Also, I use HRT and testosterone. My understanding is that levo needs to be increased due to hormonal binding when a person is using HRT. According to my weight, I am not on an inappropriate dose.
I know that reducing the thyroxine will make my muscles weaker and will reduce my capacity to be physically active. I already have a plethora of spinal issues, non healing muscle injuries and some hip joint problem that needs to be diagnosed.
Given that the fT4 and fT3 are not high in range despite the extremely low TSH, does anyone have anything to contribute here? Is the low TSH causing any problems? The GP was all on about osteoporosis and stroke at some time in the future...... My vitamins are in good order and have been for a very long time. My ferritin goes higher than I prefer so I donate blood.
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I think it blatantly obvious that you need to be on T3 alongside your t4. I know this isn't going to help the clueless GP situation. Other knowledgeable members will soon give advice on how to argue your case. Let's hope the new endo is knowledgeable
I've tried T3. Last year after the Feb 2023 test and until the end of December 2023 I took 12.5 mcg T3 and reduced the T4 so I took it 6 days per week. It didn't make any significant difference. Heart rate went up from 60 bpm to 70 bpm. That's about it. I stopped but I have a lot of Greek T3 tablets. Mostly also, ya nivver knows when the doctor suddenly sends an email and a lab requisition form. I didn't want to be caught out. But she only pestered me in September 2024 far later after the last T3 dose.
For sure, if despite the fact that a doctor may not change the dose without my consent unless that doctor can show that the current dose is causing harm, and reduces the dose for whatever reason, I will self medicate. Better than the consequence of going hypo, losing my hair, being brainfogged, exhausted, and having only one bowel movement per week. Now what's not to like about all that???? 😫
My sister experienced this. She has a small benign growth on her pituitary gland which affects her she tells me.
I also think HRT affects the assay of TSH. When I was in my 20s on the contraceptive pill I was unmedicated due to low TSH despite low levels of t3 and T4, a clever doctor told me to stop taking it for 3 months go back retest and bam my TSH shot up to 20.
I have a letter from an Endo telling doctors to ignore TSH as in chronic (30 years+) of taking thyroxine the TSH is irrelevant and that they should dose me by weight 1.6mcg per 1kg of weight.
Yeah, me too. I've been on thyroxine since age 25. 42 years.
I had MRI of the brain done and there's nothing of note on the pituitary.
But I think chronic stress of growing up in an abusive home, which was like living in a cage with a tiger, has had adverse longterm consequences. I've been told this by a psychiatrist. And that it has longterm effects on the adrenals as well.
Your GP is now on the new order of deprescribing thyroid patients. Since the BTA produced a joint consensus in2023 there have been alot GP surgeries trying to deprescribe thyroid meds for patients, claiming they don't need them anymore. It's an absolute nightmare. I would definitely see the endocrinologist and while there see if your other endocrinologist still works. Also bare in mind that there is a study the Ex-president of the BTA Dr.Pearce is now promoting which is basically to remove T3 and T4 meds from long term thyroid patients. Your test results all look fine. You can apply for all your thyroid blood tests from the hospital health records department, you can visit them or email them to get the form to apply for all your blood tests from 5 years ago to now, and that will show all your thyroid blood test results, and anything else you apply for such as ultra sound scans and xrays too. It comes in an email - so you need to download and save into a file doc for later or print off straight away.
Take these with you. Your GP must not stop prescribing your thyroid meds in the meantime. If she does she is endangering your life and you are allowed to make a formal complaint against her and contact the GMC - BUT I would make formal complaint to GP surgery first and say younhold her personally responsible for your defining health of she chooses not to continue prescribing your thyroid medication, and that if she or anyone else stops prescribing your levothyroxine then you will report them to the GMC.
that should be enough of a threat to keep you meds for now. Please join the ITT thyroid Facebook group for more support. Stay strong.
I'm in Canada. The hospital test results and the lab results are available to the GP and any endo I see.
I managed the endo I saw last year by challenging him to prove that my dose is too high. He had the bone density and ECG results. His position was that the only test that matters is the TSH and that fT4 and fT3 are irrelevant. I was gobsmacked. He is a young guy who doesn't know that he doesn't know.
My GP is going fishing to find someone else who will either insist on lowering my dose or leaving it as is. This is needlessly stressful. I don't like to feel as if I'm at the mercy of someone who has control over my health decisions. I grew up in an abusive home where it was unpredictable on any given day whether there was peace and quiet or violence. So for me all of this is like having the Sword of Damocles hanging over my head.
I'd prefer to go in and be polite if at all possible. But a threat to my bodily integrity is what my gut reaction is to this situation.
It's not as if endos here refuse to prescribe T3. That's really not the problem. They even prescribe NDT. The problem is idiots who don't realize that a patient who has been on thyroxine for 42 years may have a pituitary that has decided to not bother producing TSH anymore.
It's not like the UK where the cost of T3 is borne by the NHS via doctor's offices. As a senior, my provincial drug benefits cover the T4 but not T3. Or any HRT even though it's proven to protect the bones and heart. They prefer dishing out big bags containing vials of pills instead because they've made deals with drug companies. It's not unusual for people to be taking three kinds of blood pressure medication, bisphosphonates, drugs to stop acid production in the stomach, and various other drugs. But HRT? No way. So we have our own problems here. Just they are slightly different than yours.
A low TSH has long been promoted by the medical establishment to result in osteoporosis but disputed by patients such as us due to a lack evidence/studies. There is supposed new research that reads a low TSH “may inhibit proliferation and matrix synthesis in the chondrocytes that regulate collagen use in bone and connective tissue".
However, it is not solely TSH levels that dictate bone health but T3 (and to a lesser extent T4) that stimulates osteoblasts and breakdown by osteoclasts to form healthy bone matrix. The cartilage tissues are also T3 dependent.
Therefore, good bone health prefers a good level of TSH but can be achieved through good levels of FT3 & FT4 supported with other essential factors such as oestrogen, Vit D, vitamins, minerals, etc. I have good bone health evidenced by several DEXA scans and have always had a very low TSH since starting thyroid hormones replacement meds.
The osteoporosis risk is mostly for those medicating Levothyroxine mono-therapy such as yourself. This is because T4's use in bone health is more limited, so if you also have a low TSH it is imperative to maintain FT3 at a good level (which a lot of people can't for various reasons) and optimal levels of all supporting co-factors.
If the ranges remain the same as your previous tests then your Feb 2023 FT3 result was 65% through range. If you feel well on this level then I would say (as a laywoman) bone health is likely to be well maintained on this level.
My hypothesis for bone health, and it's mine alone, is that with HRT, vitamin D3, vitamin K2, a protein rich diet and moderate intakes of dietary calcium is all that is required. I've been doing this since 2008. The K2, that is. The rest of it I've been at it since age 45. Even though my daily intake of calcium does not regularly exceed 500 mg, my bone density is excellent.
BTW, I have noticed after some months of using testosterone that my muscles are stronger. Muscles that are stronger also help with bone health.
TSH has been 'suppressed' since about 2013. I would figure if it's about TSH, by now it would show on the bone density testing. Prior to that, the dose of T4 was not adequate (fT4 was bottom of range and fT3 was below range, TSH was 1.0) and I had all the classic hypo symptoms.
What I do have is spinal stenosis, sciatica, and herniated discs including this year, tadaaa, a pseudohernia on my left flank because the disc at T11 shifted and is putting pressure on the nerves that are no longer innervating the muscle or the sensory nerves. Bonus points. And I had to self diagnose because three doctors had no idea because they don't bother to read the MRI report from January 2024. It says right there that the disc is protruding to the left side. But now they acknowledge that this is what's wrong. Nothing I can do about it. I just can't wear anything that has a waistband because it slides off the bulge that is about the size of a 7 month fetus. I attribute the development of these problems to the inadequate T4 that for years prevented me from being physically active and resulted in deconditioning and injuries. I continued to work because I had no choice despite the pain. It was only when I had decided it was better to die than continue that I was finally referred to an endo. And you peeps in the UK think you are neglected!! HA! Squeaky wheels give up squeaking after a while because the wagon stops moving forward.
The only thing that can provide me with a couple of blissfully euphoric days without pain is taking 10 mg of prednisone for a few days. Not recommended for longterm use and yes, can cause osteoporosis among other nasty things. I figure if prednisone makes such a difference, then clearly the pain is of inflammatory origin. 10 mg is not enough to turn someone into a wide awake lunatic.
Sorry to hear about your bad back, etc. I don’t think we ever fully recover from a really long term hypo experience. My achilles heel are my adrenals that have shown good labs for a few years now but I still feel my family/friends are ahead of me a little too often. Anyway, we learn to appreciate what’s left gabkad 😁.
I looked up the endo with whom my doctor's office made the appointment. She's older than Methuselah, makes patients wait for 2 hours, goes on vacations for months at a time, and dismisses patient's concerns. I am not ageist but it's not looking good. Oftentimes I think older doctors, because they've seen a lot, can be better clinicians. She sure doesn't sound like someone who would appreciate a patient showing up with a file folder full of scientific articles. If by now she doesn't know all things thyroid, it's probably too late. I really don't understand why they have bully female endos on staff at the Women's hospital like the other one I used to see.
Looks like I'm going to have to take a big book with me because these days they don't even put out of date magazines in the waiting area of the hospital..... it's the germs! I will go bonkers because my back cannot tolerate longterm sitting situations. Doctors who make patients wait for inordinate periods of time are either very disorganized or they consider themselves more important than the patients without whom they wouldn't have a job! It's inexcusable.
I had given the name of an endo that I know actually listens to the patients. No dice. I feel like I'm being railroaded. And finding another doctor when millions of Canadians don't have one is needle in a haystack time.
I certainly don’t agree that the older endos know everything. They might have done in their heyday but thyroid research has uncovered so much in the last ten years.
Also meno-clinics here set up with doctors who specialise only in sex hormones. Not that anything is readily available unless you’re in the right postcode or are willing to pay but for those who are/can, the treatments are improving. My endo is great and a few other member reckon theirs too. They just remain still relatively scarce atm 😔
I totally agree, radd . We never fully recover from a long hypo experience. worth also noting that the recovery can take years. 4 years down the line from properly medicated and things are still improving.
I've religiously taken 200mg magnesium glycinate and it gives me diarrhoea even though it's not supposed to. No idea what's the deal with that. Seems it is not getting absorbed the way it is supposed to be. Maybe half a tablet would be better than no tablet? I took it with meals not on its own.
I eat a lot of green veg because I grow them at my allotment. Depends how much I eat, the greens can also cause loose movements. Chlorophyll, which is green, contains the magnesium. If it passes through the GI tract unchanged, based on the colour of the 'product', then how much of it was absorbed? I have no idea. And that's reporting on cooked spinach. I can understand that raw would be harder to break down.
It is interesting how when I was underdosed, I had to eat 2 cups of cooked veg every day or suffer the consequences when I was only having one bowel movement per week. Butternut squash was my friend.
I have no idea how 'they' came up with 300+ mg per day or whatever as a daily requirement. This is something I have been searching for years with no satisfaction. I tend to think it's an 'educated guess' based on the ratios of calcium and magnesium in bone. And they've come up with calcium intake recommendations which I think are based on populations who have not had their vitamin D status tested. Since magnesium is absorbed throughout the digestive tract, unlike let's say iron, then presumably even small amounts ought to get into the bloodstream.
There was a study using epsom salts in bathwater which showed that magnesium is absorbed through the skin. I put these into the bathwater each time since I don't do showers. However, I don't know what the concentration was in the experiment. I just add almost 1 cup to each bath so that's going to have to do. It's not expensive when purchased in massive jars from Costco.
The studies I've seen have woefully underdosed Vitamin D3 in their test subjects and concluded that vitamin D3 plus calcium does not improve bone density. Ah yes, without protein it won't and they don't bother to ascertain the protein intake of their subjects. Bisphosphonates it is then. 🤑
Vitamin K2 is something most doctors have never even heard of. With 'only' at most 500 mg of calcium per day my bones should be crumbling except they are not. So I take the magnesium recommendations with a 'grain of salt' so to speak.
I think osteoporosis has a multifactorial aetiology. It is a disservice to women that they are not informed of what it is they need to do in order to preserve their bones.
Thanks. I Just read Dr. Kendrick's article. Interesting and devastating that anyone drinking pure water that has been stripped of its minerals will develop magnesium deficiency. The water here is 9 mg/l. Not very much really.
Coconut water contains about 250 mg per litre. Also loads of potassium. I think I'll get back to drinking this stuff again. I used to drink it regularly and let it lapse.
I know this will not help you either, but I feel that in Canada more and more power is taken away from the patients under the guise of patient protection and social equality. As long as I can remember the patient had to have a prescription from a Canadian doctor to get any medication, but not too, too long ago a patient could order blood tests by mail and test "privately". That is not possible anymore either. The system is crumbling and patients are dyeing in the waiting rooms, but, g*d forbit, the knowledgeable patient does anything self-directed. And chances are, if the patient shows too much knowledge, the doctor will really dig in and insist that their way is followed regardless of what happens to the patient. It is difficult to find just the right balance of advocating and groveling. No knowledge, no valid argument, no patient experience...nothing will sway most Canadian doctors to deviate from their chosen path. And they all choose different paths, so its like playing the lottery. I sincerely hope that the endo you'll be seeing takes the time to look at more than the TSH and has more than 1 minute to truly listen to you (without being offended), because, even though your TSH is low, your FT3/4 are not high (if anything they are also low). I hope the endo will not follow the mantra of "low TSH equals osteoporosis, stroke and heart attack". If you are doing well on the dose you are taking, it would be foolish to fiddle with it. If it ain't broke, don't fix it. I wish you all the best and hope you'll win the medical lottery.
Actually there's one of the private blood testing services that people in the UK talk about that can be used here in Ontario. The person pays on line for the tests they want done and then goes to Life Labs. Right now I can't remember the name but I did provide the information for someone who was here on the forum and lives in Toronto. She never followed up on here so I don't know what happened after that.
As your GP is so hell-bent on increasing your TSH, ask her to explain what TSH represents. Assuming she comes up with a semi-accurate (T3/T4) answer, ask her to then explain why the TSH is so surpressed when your T3/T4 results are only 20/30% through the range, and how she can gaurantee that it won't put you under-range and make you (more) ill if the medication is reduced.
I don't see how she can answer those questions in a logical way, as it's very obvious to anyone of reasonable intelligence that your HPA feedback system (for whatever reason) is not normal.
The problem is that physicians assume, that the TSH-T4-T3 relationship is the same in hypothyroidism (or hyperthyroidism) as it is in a person without the disease, which is not the case. In fact, the addition of levothyroxine can result in low FT3 levels when TSH is in the 'normal' range. Therefore many patients might need higher LT4 doses leading to lower TSH to achieve sufficient levels of T3 to feel well.
This is one of the key papers from Hoermann and Midgley
You're right, it's been one of my areas of focus recently. Why the doctors concentrate so much on TSH, whose "normal" range is dictated by 5%-95% percentiles in the normal general public, when those with Thyroid dysfunction have an incomplete feedback system.
T4-only medication distorts this further. The feedback loop is obviously strongly biased towards FT4, so like you say, you could have top range FT4 levels, causing a low or suppressed TSH, and next to no FT3 levels. The weaker TSH-T3 shunt part of the feedback loop has a similar reaction with T3 Monotherapy, and suppresses TSH.
So the only way the TSH readings might be valid, is with NDT or T4+T3, and even then they're not accurate, as the T4/T3 concentrations will not be perfect, and will fluctuate based on medication timing rather than the bodies natural dynamic system.
I'm waffling now, TSH is a great measurement for diagnosis, as an early warning system (it will go out of range months before FT3/FT4), but only if acted upon early enough. But I'm sure we can all agree that for medication adjustment it's largely useless and causes us all so much pain.
She wouldn't even try. Her answer to many things is 'it is not within the scope of my practice'. I have not yet asked her what is. We've had several rather unpleasant exchanges over the past year. I just don't see the point of antagonizing her any further. I did discuss with her about what exactly she did that caused our relationship to go off the rails. She listened and accepted that how I experienced her behaviour was valid. But then here we are with the blasted TSH business and yet another controversial situation that I can't win because she is stonewalling me.
She has been competent in referrals when I was entirely disabled by sciatica but unwilling to prescribe the medication required to cope with the pain. I suspect she got herself in some sort of hot water at her previous job in the hospital. She's never worked anywhere for long so I'm hoping she moves on. There are other physician in the practice and one of whom I have had dealings with in the past. It's possible she will not see me though because she is my daughter's physician and there's all this b.s. about privacy. Many doctors won't treat family members.
That is so very unfortunate Cake-Maker. I hope your BC is solved and you have recovered.
This whole genetic business is so difficult. I inherited hyperflexibility. Have not had DNA testing done. Both of my daughters inherited it from me and they are easily injured, most especially the older one. Who knew that this is something that could be passed down? I didn't even know I had it because we only experience living in our own bodies and nobody warned us about the adverse possibilities.
At least some parts of ourselves still function well, like our brains even if our bodies betray us.
I'm just getting on this merry-go-round. I've been on Levothyroxine (now at 112.5 mcg) since August this year and already having various GPs at the practice say I need to reduce dose. Last blood test FT4 was 16 - 9-19 range.
Luckily, (there has to be a positive somewhere 😏) as I have Central Hypothyroidism I can tell them my TSH level is irrelevant (0.06 last test). This has been stated in a letter to the practice by my endocrinologist. However, I foresee this conversation being repeated very often!
This is a very complicated subject. The availability of DNA analysis at low cost is very new. And just because someone has the genes doesn't mean they will develop the problem. For example, Dr. Alessio Fasano has an ongoing study on the genetics of Coeliac disease. Not everyone with the genetics will develop the disease. Or in two cases, women in their 70s all of sudden developed coeliac disease and why? Was it a viral infection? Was it a course of antibiotics? I haven't been following up on his research more recently, so I don't know what sorts of conclusions he has drawn.
There are genetic 'diseases' or 'conditions' that are 100% inherited with consequences. It is unfortunate that the manifestation of these are usually later in life so we are unable to make decisions as to how we want to live our lives prior to. It's like the BRAC genes. Angelina Jolie had double mastectomy and full hysterectomy in order to eliminate or at least significantly lower her risk. But how many women are prepared to do something as radical? She already had her own biological children at that time. But are women prepared to eliminate risk before they have had the opportunity to bear their own children?
There are potentially enormous life choice impacts of obtaining information. And the various genetic conditions may or may not be considered as serious life altering risks and choices for any individual.
Yes I’m like you got a GP who has got very nervous about TSH of 0.02, despite the fact it is often like that for last 20 years, and according to my private blood tests over last 8 years, with Frees 3/4 too, never got higher than 0.06. He did reduce my levothyroxine dose for 6 weeks this summer, without my permission, fortunately not being able to touch the 15 mcg T3 as that is a private prescription. He thought I was ‘overmedicated on Levothyroxine’, at 100 mcg, despite having a letter from the private endo ( actually an ‘old’ retired Prof) saying I should stay on the 100/15 combo. I was happy with this and refused to pay out see him again privately just to satisfy the GP’s qualms…did reach and did get to see a NHS endo in neighbouring Trust…. a 45 min.appointment where he searched his PC and got lots of lab tests going back over 22 years, which. I had never found. Combined with my private blood tests this seemed to convince him , with overt hypothyroidism, I did need the 100/15 combo, despite the fact he would have preferred a higher TSH. I know Canada’s health system is not like ours, with pros and cons, but the NHS here also is very different regionally too, for eg where I live DEXA scans, and HRT were/are not a considered requirement, it was only the private endo.who thought a DeXA scan might be a good idea c.25 years after my periods had stopped. I can only suggest do more research trying to get a referral to more sympathetic endo., even if some distance away, and put your thyroid and other results in some easily seen tabular form to show the endo. I have had spine/ hip problems for over 40 years ( with neck vertebra disaligning), and fibromyalgia for 10+, and do believe my pain/ stiffness is worse when my FT3 is low…there is research linking T3 to tendonitis/ cartilage growth and maintenance which might be a starting place.
she sounds very much like my dr , in fact I had a letter telling me my thyroxine had been reduced by 25 , I’m now going to try and get it back if possible as tried for 6 weeks and not feeling as good most joints hurt and now ankle keeps trying to give way so I’m expecting to have a fall soon it makes you so angry and fed up hope you get sorted ,
I've been searching for an alternative endo but it seems either the ones around are not terribly good for thyroid or they are in the IVF business which, of course, makes them lots of money.
It's disheartening to realize that thyroid issues, despite the fact that an awful lot of women especially have them, the endos focus is on diabetes or IVF. I think, over time, we will be among the most undertreated and chronically ill patients.
When our bodies are falling apart, the last thing anyone will consider is that it is due to the metabolic disturbances of inadequate thyroid hormone. It will always be something else. Sort of like how women are pushed to take anti-depressants instead of providing them with HRT. (Which I do know isn't the answer to all ills as amply illustrated by Cake-Maker who has contributed to this thread in very informative ways.)
There is an all pervasive misgynistic way in which medicine is practiced despite the fact that half of the medical school graduates are women. They are still being taught by men who dismiss conditions like fibromyalgia as being a sort of neurosis.
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Stay strong. 
NHS endo refused LIO trial based on these latest test results
Increase needed but do I increase T4 or T3?
Advice on TSH please 
On average, how long is it likely to take before I feel a decrease of 12.5mcg Levo?
Is this Hashimotos?
