I was diagnosed with autoimmune hypothyroidism in 1995 at age 19 and did well on levothyroxine alone for years. I always felt better with fT4 high in range, although this suppressed my TSH to almost undetectable levels. A few years ago, I started to get hypo symptoms again, and bloods showed that my fT4 had decreased to midrange, and my TSH had increased to around 0.25. While still well below the normal range, it was a big increase for me. It also showed that my fT3 was also just below the bottom of the range.
I got an appointment with the endo clinic and it was agreed to start me on a small amount of T3. My symptoms resolved pretty quickly, and my TSH dropped back to its previous level; fT4 stayed in midrange. I made sure to get my bloods done every six months or so,and adjusted my T3 dose accordingly.
At the start of this year, I started to get horrible joint pains, especially in my hands and fingers. Bloods were done for every conceivable thing and all came back normal except for fT4, which was over range (and, obviously, the suppressed TSH). The GP did not test fT3. He told me to stop taking T3, remarking that he didn't understand why I'd been prescribed it in the first place, and so I did.
I had some bloods done privately in France last weekend, and it showed that my fT4 was still over range and my TSH suppressed; fT3 was low in range.
I have been having increasingly terrible intensely hot flushes and sweating, so think it likely that these are related to having too much fT4 swilling around the system. As I'm not able to speak to a GP until next week, I'm going to drop from 150 mcg of T4 per day to 125 mcg.
However, I have no idea why I'm suddenly over range and why it's affecting me so much. I fear that the GP will try to get my TSH up to near the bottom of the range and that I'll feel really ill. I'm definitely going to ask quite strongly that my fT3 continue to be tested while dose changes are made as I'm 75% certain that dropping my T4 will bring up my TSH but also push my fT3 below the bottom of the normal range.
I just want to stop sweating (not menopause - already taking max dose of oestrogen for premature onset of that) and for my hands to stop hurting. But I don't want to achieve this at the cost of having to live with hypo symptoms.
If you've made it this far, thank you. Any advice? Is it likely, as the GP stated, that suppressed TSH is the cause of the joint pains?
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Is it likely, as the GP stated, that suppressed TSH is the cause of the joint pains?
Asolutely not. TSH does not cause symptoms. And your GP is a wally that knows nothing about thyroid!
TSH - Thyroid Stimulating Hormone - is a chemical message from the pituitary to the thyroid telling it when to make more hormone. If it goes low/suppressed it's because you don't need it anymore. And that is not a problem. GPs should not be dosing by the TSH, for all sorts of reasons, and should not be scaring patients with dire consequences if it is low.
T4 is basically a storage hormone, that doesn't do much until it is converted into the active hormone, T3. Unfortunately, not all us hypos are very good at that. You obviously aren't, either. So, the endo was right to give you T3 and your GP was wrong to stop it.
Some people do feel bad if their FT4 is too high, but it's not really the T4 causing the bulk of the symptoms. It's the low T3 that is making you feel so bad.
I fear that the GP will try to get my TSH up to near the bottom of the range and that I'll feel really ill. I'm definitely going to ask quite strongly that my fT3 continue to be tested while dose changes are made as I'm 75% certain that dropping my T4 will bring up my TSH but also push my fT3 below it.
If he starts that nonsense, just tell him he's a wally - in the nicest possible way, of course - and that you really don't care if your TSH is suppressed. (Mine has been suppressed for many, many years, with no ill effects). What you want is your FT3 higher to improve your quality of life. Doctors are supposed to be their to advise you, not dictate to you. Your not a victim, tell him what YOU want - that's what it's about, not what he wants.
Reducing your T4 will, of course, also reduce your T3, because the T4 is converted into T3 - you can't convert what isn't there. And, it might not even bring your TSH up at all. When TSH has been low for a long time, the HPT axis becomes down-graded and the TSH never rises. Can happen. What's he going to do if that happens to your? Stop your levo altogether?
Better still would be to see another doctor, if you can. They are all pretty ignorant about thyroid, but this one sound particularly clueless, and on an ego trip! Don't allow him to bully, badger, scare or gaslight you into doing something you don't want to do.
Thanks. However, all of that notwithstanding, is it possible that fT4 being over range is causing the joint pains and feeling of being way too hot for most of the day? Can one have symptoms of being hyper if fT4 is too high but also hypo if fT3 is low?
One can most definitely have hypo and hyper symptoms at the same time, because the available hormone is not going to be distributed fairly or evenly between the cells. So some have too much, others too little, and some none at all! But, more of your symptoms are going to be down to the low T3 rather than the high FT4. T4 doesn't cause much in the way of symptoms. And, hypo and hyper symptoms can be very, very similar, so difficult to go by symptoms alone.
I can't say this is the same as you, but I have T4/T3 conversion problems too, sometimes worse than others. In the past, when on Levo alone, I managed to get my FT4 to 22 (top of range was 20) and I felt horrible. Hard to say why, but I just felt really off and alarmed half the time. My FT3 was still low. So I am someone who needs some FT4 in the tank (I tried T3 only twice and that doesn't make me feel good at all) but I don't need it right up a the top, let alone over the top.
If I were you I would be asking for my T3 back and I'd reduce the dose of T4 and monitor.
When were vitamin D, folate, ferritin and B12 last tested
Sweating is often low B12
ESSENTIAL to test vitamin levels at least annually
How much T3 are you currently taking
Was recent test in France done as recommended
all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
On T3 - day before test split T3 as 2 or 3 smaller doses spread through the day with last dose 8-12 hours before test
Is your oestrogen tablets or patches
Adding HRT frequently changes thyroid levels
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
Vitamins and ferritin fine (solidly midrange); last done in April. Not GF or DF, also never going to happen. Have always made sure to leave at least 24 hours between last doses and testing. Was on 20 mcg T3 and 150 mcg T4. Once prescribed T3 always asked for fT3 to be done and this was always agreed. Had bloods done privately in France because of not having fT3 tested in April and also wanted to see what effect of dropping T3 had on TSH and fT4. Oestrogen is tablets,and have been taking for about five years now.
Technically speaking, I have Ord's thyroiditis and not Hashimoto's, as I did not have any goitre on diagnosis (although my antibody counts were stratospheric).
All vitamin results and ferritin were higher than the levels you mentioned 🙂
While not GF, I generally stick to a low carb diet because of blood sugar control issues. I've not had any issues with dairy, that I can tell, up to now (so for nearly 30 years) 🙃 I'd be hugely reluctant to ditch dairy as Greek yogurt and cheese are the basis of being low carb for me.
I hate to say it but dairy causes inflammation for me especially achy joints... if you want to put it to the test just cutting it out for 3 days will give you the answer.... possibly not the result you want but 🙃 going GF takes much longer and thankfully wasn't the answer for me it was just barley that needed cutting out 😅
Hose with high ft4 and low ft3 you definitely need to be back on liothyronine t3. That was the reason it was prescribed.Taking liothyronine t3 reduces the ft4 level slightly so stopping will have caused a small increase in ft4 levels. For me the difference is 10%-without liothyronine t3 my ft4 sits at 60%through range. With liothyronine t3 added my ft4 sits at 50%through range.
But what is causing the bigger increase resulting in symptoms? Have you done anything different diet wise? A change in the gut could mean that your absorption of oral levo has improved. Are you eating anything that would affect your vitamin levels which again would alter how your body uses thyroid hormones?
If I was having your problems I would be reducing levo by 25mcg. Then after a week adding in 5 mcg liothyronine t3. I'd monitor bloods every 6 weeks and continue to alter either levo or lio dose every 6 weeks untill I got my ft4 in range and my ft3 up from near the bottom. Thereafter I'd continue to monitor thyroid levels while working out what I felt I needed to do next.
That sounds like a solid plan, but it's getting the GP's buy-in that'll be crucial as I'll be reliant on them to prescribe the blood tests, and much as I love how easily and cheaply one can get bloods done privately in France compared to the UK, going every six weeks might be ruinous 😄. I really can't think of anything diet wise that has changed, other than perhaps a slight increase in carbs (holidays!). I am baffled as to why the fT4 has suddenly rocketed, although I understand that we need less as we get older. However, I wouldn't expect it to go over a cliff like that. Of course, I don't know what my fT3 was in April, which would have been useful to know...
My fT4 level is about the same now as it was in April, and so is my TSH. So dropping the T3 has had absolutely zero effect on the bloods and I feel suckier than before in terms of joint pains! And much, much hotter as well.
Getting 5 mcg T3 is going to be a challenge, given that only 20 mcg tablets are available by prescription in the UK and they tend to crumble when cut. *sigh*
Sorry wouldn't know about effects of COVID.5mcg tablets are expensive. Many on here seem to manage to cut 20s with pill cutter or knife. I can half mine with a pill cutter well.
Sharp craft knife was how I cut 20mcg Thybon Henning tablets into quarters. The pill cutter was too much a sledgehammer to crack a nut scenario with such small tablets.
personally, I would go back on the t3 but bring the t4 down mg down. I think by the looks of your bloods you without a doubt need a t3 med. by reducing your t4 like already stated above is going to make your t3 drop which is then going to cause you hypo symptoms.
Your Dr should not have just pulled you off of t3 but reduced your t4 and possibly even increased your t3.
Hello there,I had a thyroidectomy due to graves disease last June and I am going through something similar to you at the moment.I was OK on levo only until January this year.The difference with me is that my TSH was high(over 10) although my T4 was at the top of range.My private bloods showed my T3 was below range(2.9).I was refered back to endo by GP and he put my levo up from 100mcg per day to 125mcg per day.This resulted in my FT 4 going up to 33.5(top of range is 22) and my T3 was 4.Having experienced hyper graves I knew I was overmedicated.Sweating badly,restless sleep,never off the toilet,twitchy and agitated etc. plus lots of aching joints and muscles.I am now reduced to 100mcg Mon-Thurs and 125mcg Fri-Sun.I think this is still too much,symptoms still there.I have a blood test end of September and will do my own private ones to get the full picture.I was going to ask endo for an NHS trial of T3 but he only corresponded by letter.I think I will need to try T3 as the only way to get my T3 into range is to go massively over on T4 which is no good.I might have to go down the private route or I think you can speak to a pharmacist at Roseway labs and if there is a need they will sell it to you.I saved a post on here about it so will have to check and also cost is an issue. Can I sustain it long term? Can you get back on your T3?Wishing you all the best.
I just wanted to add that when I had the bloods done in January it was because I wasn't well.I thought I had shingles (ended up I didn't) but I felt ill,achy sweaty,a tingly tender feeling one side of the back of my head.The man on YouTube Dr Westin Childs the thyroid expert once said that many doctors don't like to do thyroid bloods when you are ill because they will be out of whack.It could be the covid,who knows.My daughter has long covid and she is a changed person from the healthy 27 year old she was before catching it before 1st lockdown.Just wanted to say that me being ill at the time of blood test could have affected it.
The only time I have joint pains is when my FT3 level is too low. When higher in the range I feel well. It's like a switch that turns on symptoms i.e. pain wherever they occur. My TSH has been suppressed for years I have no problems with it. When I had my Thyroid removed the professor surgeon sent me home with a letter stating that my TSH was always to be supressed. A Professor Thyroid Surgeon know lots more than you GP that's for sure.
GP's are only General not specialists after all, it's up to you to take charge of your health.
Thanks, all. I'll speak to another GP next week and see how it goes. In the meantime, I've looked back over the bloods done in April and it seems my ANA was above the normal range at 2.6 (0.0-0.9) and my dsDNA was near the top of the range at 9 (0-10). So I'm going to discuss that with the GP too.
They definitely suggest autoimmunity, but not necessarily Lupus, although probabilities are definitely higher than with negative ANAs. Some rheumathoid conditions can come back with positive ANA as well as Sjögren's Syndrome, connective tissue diseases such as scleroderma and polymyositis. Also, Lyme disease can have positive results. More studies are indispensable to connect all the pieces.Kindest regards.
Hello, I don’t think it’s anything to do with tsh , I’m thinking about your hands I had trouble with mine well both actually, it turned out to be Carpal tunnel, had op on both and had no more trouble, hope that’s of some help , get them to test them , I went to the hospital they did several tests then said they had some measurements to do but that’s what it was , good luck
Well it is a pity, I mean there the drs it should be compulsory that they learn about it a bit more there’s a lot of people that have the problem, they all seam the same , the last time I spoke with a dr they said we don’t do t3 , I wish I had been quick enough to think , because the next one that says that to me , I’m gonna say well I hope you don’t ever have a thyroid problem , and don’t convert because I think you’ll quickly change your mind ,
about 3 yrs after menopause, i became overmedicated on same dose of levo i'd been stable on for 15 yrs previous , with classic hyper symptoms , fT4 only slightly over range , but TSH a little lower than usual .
Dose reduced by 25mcg , and symptoms of overmedication resolved. Then 3 yrs later my fT4 went way over range 20 [7.9-14] , but no symptoms of overmedication.
Does reduced by another 12.5mcg .. (but fT4 weirdly went up further ?)
Dose reduced by another 12.5mcg but i developed symptoms of undermedication on that dose , so despite fT4 still to high at 19 [7.9-14] , the dose was put back up by 12.5mcg
The fT4 level later came down by itself .
I don't have a solid explanation for this spike in fT4 levels which lasted about 16 months.
But ..... I know estrogen level has a direct effect on fT4 'binding' by affecting the levels of Thyroid Binding Globulin(TBG) produced by the liver..... higher estrogen = higher TBG meaning more T4 is bound , and less is 'Free'
So ( i think) changes in estrogen level around menopause / HRT can have an impact on the fT4 level ~ ie. if the same amount of T4 was present overall , when less of it is bound, (presumably) more of it is free ?
Free T4 (fT4) test measures only the Free T4 .
TotalT4 (TT4) test measures the 'bound' T4 + the free T4 .
We have seen several cases on here where previously stable FT4/FT3 / TSH levels have gone wonky a few months after getting covid , and dose has had to be adjusted (sorry can't find them , search facility on here is a bit useless)
I've read research studies showing increase in new cases / relapse of Graves disease following covid.
so yes, covid definitely has the capacity to cause post infection alterations in thyroid hormone status .
if you search online with terms ' covid hyperthyroidism ' 'covid thyroid hormone levels' 'covid hypothyroidism ' or similar, you will find lots of research papers.
(ignore the ones looking at altered levels during acute phase of covid ,as thyroid hormone levels are expected to be altered during acute illness of any sort (Non Thyroidal Illness Syndrome) ... look for ones showing alterations in previosly stable thyroid status post covid.
relatively cheap (under £30) fT4 + fT3 + TSH tests are available via Monitor My Health (an NHS postal service run from the NHS lab in Exeter) ~ fingerprick type blood test ~ lots of members here use it to get regular fT3 results when GP won't do them (+there's a 10% discount code available from Thyroid UK charity)
Hi there. Many people have mentioned very good points, one of them being that your doctor truly knows nothing. Having said that, hormonal replacement therapy is a complex thing that requires constant monitoring and evaluation. You sound like you have an imbalance between estrogen and progesterone. You can not "supress" menopause. You ameliorate symptoms, but if estrogen is being administered (also, what kind of estrogen? How good is your elimination? Is your liver truly metabolizing hormones successfully, including thyroid hormones?) Without progesterone, then whoever is handling your HRT is not very knowledgeable. Also, do you have an implant? Is it dermic delivery? Is it a pill? Is it synthethic? All of this has a huge impact.
Going back to thyroid, remember that if your liver is not being efficient, you won't improve thyroid function. Also, why does the doctor want your TSH so low? Below .800 you are more into the hyperthyroid realm. Also, do you control your autoimmunity with diet and oligoelements that improve metabolization?
Also, how are your cortisol and prolactin? Both impact thyroid and its hormones and viceversa. For example, cortisol increases in the body are deleterious to Ft4 conversion into the active Ft3. So, as you see, everytjing needs to be evaluated, not just TSH or Ft4
Hi Lalairocks, re. Why does the doctor want TSH so low ?
Doctors usually want TSH in range .. the problem is that some patients need a thyroid hormone dose that leaves TSH below range .
re. 'TSH below 0.8 is toward the hyperthyroid range' . well yes , it is in unmedicated people , (although most 95% population ranges are 0.4 ish at the bottom end , so 0.5 - 0.8 is actually a perfectly normal level for a lot of healthy people )
But..... once we are taking thyroid hormone replacement, the TSH relationship to T4/T3 levels is shifted downwards a bit. Details here : healthunlocked.com/thyroidu.... tsh-is-just-the-opinion-of-your-pituitary-about-your-dose-but-your-pituitarys-opinion-is-a-bit-warped-once-you-take-thyroid-hormone.
So a person who (when healthy) had a TSH of 1 or 2 may well end up with a TSH of 0.04 when on levo , but not be overmedicated.
(This doesn't apply to everyone , obviously some people would be overmedicated with TSH 0.04 ) ... as you say , the TSH alone cant be used to decide if overmedication is an issue , and even fT4 can be a bit misleading , so symptoms and fT3 level need to be looked at as well to get the true picture.
Hello, there! First and foremost, thanks for your answer and thanks for the links. I re read them, even though I am familiar with the studies.
So, I absolutely agree that each body is unique and doctors need to LISTEN to patientss' symptoms and clinical manifestations. Absolutely agree. Having said that, thyroid function is not a stick one can pull and push forward with medication. What these approaches and articles fail to acknowledge is what it really takes for the body to use thyroid hormone appropriately and how conversion happens. Patients with over medication tend to show symptoms of this. You can not improve conversion of a hormone just by pushing in more hormone. You manipulate the numbers in the serum, but you are not really making the cell and tissue absorb it and the majority of doctors DO NOT understand this, becausw they see thyroid as this loner who barely interacts with adenohypophysis. The main actors in thyroid hormone conversion are the liver, cofactors and other hormones such as cortisol, as well as pro inflammatory cytokines. For example, "selenodeiodinases (D1, D2, and D3) catalyse the interconversion of different iodothyronines. Studies in critically ill patients have shown decreased activity of D1 in liver and skeletal muscle, increased D2 activity in skeletal muscle, and increased activity of D3 in patients with acute myocardial infarction. The diminished production of T3 from T4 resultant of low D1 activity combined with increased rT3 production from increased D3 activity generates the classical pattern of low T3 and increased rT3, while also explaining why in some conditions higher T4 levels may be found."
Now, bad nutrition where minerals are depleted, cases in which selenium, Zinc and D3 are low or calcium is too high affect thyroid function immensely. Also, high cortisol, excess estrogen.
For example in chronically ill patients abnormal production of thyroid binding globulin (TBG) is a potential cause for thyroid hormone alterations which can develop Nonthyroidal illness syndrome or NTIS, where T4 is high and T3 is supressed or low especially if total T3 or T4 is being measured. Usually, patients with NTIS have low TBG levels. In some cases, massive protein loss or lack thereof can be a contributor for this. Also kidney issues and metaboloc syndrome.
Fatty liver is another contributor to a lack of effectiveness of thyroid hormones on peripheral tissues and organic function. So, if as doctors we only raise or lower medication thinking of thyroid and pituitary, we then are ignorant people, incapable of helping our patients.
To finish this off cytokines arw active in pur bodies, very often, even without an officially recognized chronic illness. For example, insulin resistance increases inflammatory markers. Inflammation, even low grade and the production of cytokines are implicated in the suppression of hypothalamic-pituitary axis often seen in patients receiving thyroid replacement therapy. More T3 produced locally or medicated, could render the pituitary euthyroid even in face of a generalized hypothyroid state, with low circulating levels of T3. Since most chronic ambulatory diseases carry a strong inflammatory component, it is very likely that many (if not all) of these mechanisms are present in these situations.
An important factor that is worth mentioning is that patients with chronic systemic diseases are often under treatment with several drugs that can affect thyroid hormone metabolism.
So, nop, increasing medication until ypur pituitary is supressed is not truly a comprehensive solution nor will it resolve symptoms fully. It is a temporary patch to a deeper issue.
So, when approaching "thyroid" it can not ONLY be treated as an isolated organ and manipulate numbers. It is important to know, do you have an infection? Did you go through a lot of stress recently? Do you take medications? Do you have parasites? Are you prone to colds, chronic pain or some sort of mysterious symptom? How do you eat, sleep, poop? What other, seemingly, unrelated symptoms you exhibit, if anything? How is your iron state? How are your minerals? Liver and renal function? How is your toxic load? How are your other hormones?
Thank for reply lalairocks ,,,will reply later when i've read it properly (off to buy some more coffee beans.... and to look up the word 'adenohypofisis' )
What a great comprehensive response exemplifying just how multifaceted and complex autoimmunity can be, and only a multifactorial approach will allow access to wellbeing. 👏
• in reply to
Hi
As you’ve declared in your post that you’re a doctor, can you tell us please what ‘sort’ of doctor you are? 😉
Hidden ' I absolutely agree that each body is unique and as doctors, we need to LISTEN to patients symptoms and clinical manifestations.'
The above quote from your comment seems to imply that you are a doctor, but there is no information whatsoever in your profile. We don't even know which country you are in. Hence we have no proof that you have any bonafide medical qualifications whatsoever.
This is a 'Patient to Patient' forum, where members are anoymous. You could be anyone posing as a health professional, how can we possibly know?
From the HealthUnlocked T&Cs:
HealthUnlocked accounts should only be used by individuals. Any accounts portraying themselves as healthcare professionals, providers, researchers or organizations need to be approved by us.
I hear you. However, a genuine qualified, practising medic who's any good at their job should not have time to be hanging around on patient forums. Offering to help because he/she is a physician could be construed as 'touting for business', which is most definitely against the T&Cs of HealthUnlocked.
RA, I don’t know we should be telling people/physicians how they should be spending their free time, if they want to help on the forum isn’t that up to them? Doctors do have free time. Ask them for their credentials sure, but judgements beyond that seem a little bit inappropriate.
I do appreciate that you must protect the forum by asking for credentials, I just wonder if it could have been done via PM? Feel like we might have frightened a very well-meaning and valuable member away ☹️
Lalairocks - there is a great Reddit forum called “Ask A Physician.” If you want to spend time helping people on forums that might be a good place to go.
• in reply to
Hidden You have a great deal of knowledge on thyroid issues, particularly those relating to cortisol. However, you’ve very sensibly put a ‘disclaimer’ in your profile informing people that you have no medical qualifications. In fact, many members have done the same thing.
I’m sure that we have a few doctors on board (in fact I know we do) but they don’t advertise that fact. They accept that when they’re on this forum they are here on a patient-to-patient basis and that the information they share is no more or less valid than anyone else”s.
I will remove that part of the comment because I want to remain anonymous and I won't register with my real data, but I am not posing. I did not diagnose, recommend medications or dosages at alk, anyone with anything, cause I know better than doing such an irresponsible thing online. As far as I know, it was a friendly exchange discussing approaches towards thyroid function and treatment and sharing knowledge. Nowhere in my comment did I recommend a dose increase or decrease or even a specific treatment for the OP. I did not even mention anything directly towards what the poster mentioned about the modification the person applied to medications. I see people mentioning specific mcg dosages "to normalize" results, which could potentially be more dangerous than saying "in my experience as such professional, I have seen adverse outcomes without a 360 approach." Anyways, removing that part right away.
• in reply to
You’re missing the point. You’ve already declared, and now reconfirmed, that you’re a doctor.
Whether you remain anonymous or not this gives some members the impression that they can ‘trust’ what you’re saying because you’re a doctor.
RedApple made the following comment;
You could be anyone posing as a health professional, how can we possibly know?
We still don’t know because you’re refusing to comply with the terms and conditions of this forum and are insisting on retaining anonymity. This means that your account remains unapproved by HU.
I have serious doubts that you’re a qualified medical practitioner.
Your reply to a question on the Lupus Forum regarding your status is frivolous and inappropriate.
I was hypo and took T4 Levothyroxine for a long time then suddenly my TSH levels changed and I became hyper with all the nervouseness (internal shakes). I took me 2 years to persuade my GP to refer me where I found out that I had stopped converting T4 into T3 for use around the body. I am now on a combination pill but you can get them in separate pills and I am fine again. Good luck
My sympathy and Blessings for you. I would first try to lower my T4 to 137mcg from 150 mcg. An in between dose might just be your optimal. TSH rises very slowly if at all. Slow and steady wins the race.
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