Hi
Can you please direct if possible to links re how a low thyroid affects heart & bones if this is the case🤔
Many Thanks as usual to wonderful society
🌸
Heart & bone implications: Hi Can you please... - Thyroid UK
Heart & bone implications
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Jeppy
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This study academic.oup.com/jcem/artic... shows risks of high and low thyroid levels.
And we all know how reliable and accurate observational studies are don’t we (not)!Are there not any proper double blinded controlled studies that prove this ….. no, because there aren’t any as far as I know but I stand to be corrected!
Observational (possibly prospective) are all that we have. This study does show that a mildly elevated TSH is much worse than a low TSH. So, it's supporting our cause although we should follow the evidence whether or not we like it. I can't see a double blind study because we would have to deliberately make one goup hypo or hyper and this is unethical. Maybe an animal study could be done. Nonetheless the study I cited shows that even a mildly elevated TSH is associated with adverse events and this is evidence that an elevated TSH should be treated even if the person feels perfectly well.
A long term study is what we need 30 - 50yrs. I’d be part of that study. I’d be one of the ones with a suppressed/undetectable TSH. I am not going to get heart disease/trouble or osteoporosis. Although this study suggests that I am. This study will not help my cause. If my TSH is in range, I’m very ill.
Unfortunately we have those rather inept medical people that call themselves Dr's that like to treat everyone with a Low/suppressed/ or anything below what they judge as normal TSH, by telling us to lower our dose and there by making us even more unwell than we are all ready! They blindly cling on to any paper regardless of what it says as long as there is a connection between TSH and heart and bones!
😳🤦♀️Im going to have to switch off now
I hate being angry
Im ok as long as have a plan
Xxxx them tbh. I hope they catch up for my kids x
Agreed but the paper I referenced shows a high TSH is worse than a very low TSH.
Yes, that’s how I read it but it did also suggest that suppressed TSH had similar outcome to High TSH.
Yes, that is what the data shows. We have to be careful to distinguish between a suppressed TSH and a very low TSH due to insufficient secretion by the pituitary. It seems unreasonable to extrapolate the consequences of a suppressed TSH to cases of subnormal TSH secretion. In the latter case thyroid hormone levels are not above average.
I’m concerned that these types of studies are skewed because they are not doing full thyroid testing. I cannot see, from my limited access and limited intelligence (within the realms of science, I in no way think I lack intelligence, but data, statistics and scientific wording is often beyond me) how conclusions can be drawn. Talking to a lot of patients atm, the number of them trying to manipulate blood tests, by not taking T3/Levo for 1/2/3/5 days before testing in order to make their numbers acceptable to a medical professional is just astounding! Half arsed studies like these are driving the medical professionals to unhelpful conclusions, putting patients at risk and further pushing a wedge of discontent between us. Instead of working together, being honest, we very much are ‘them and us’. Thank you for posting this jimh111 , I may not be content that such studies are out there but at least it gives me a clue as to why my Endo is concerned.
This is the best study I have seen. I agree that more recently patients have distorted the data by fiddling their blood tests. I always argue against this not just because it may distort studies but also because it reinforces doctors' misconception that patients only have symptoms when TSH is high. I've noticed that the worst affected patients on the forum suffer from a TSH that is too low rather than too high, probably due to a minor pituitary problem.
But is this the ONLY study? Surely for the amount of sheer bullying that we experience on this subject, you would think there was overwhelming evidence. I have not lost my thyroid either. However for years I have had a suppressed and in most cases very suppressed TSH no matter if I was on Just T4, NDT or combination therapy and for the past 2 years my T4 at least hasn’t even been in range! I’m fed up with fighting these Drs and after 20 years you would think by now I’d be showing evidence of heart or bone issues if what they bang on about was true.
Sorry to hear. Im tired and dispirited too its not real living how ide wish trying to fix yourself
I do have bone issue so why keen to know which bit if any is at route.
Its downhill only support here
Is this the only study ?.. no, there are gazillions of them. ( mostly all as flawed/ misused as each other )
for example a very quick search just now of 'overtreated hypothyroidism' found me this one ncbi.nlm.nih.gov/pmc/articl...
"Subclinical thyrotoxicosis, a low TSH with normal thyroid hormone level, can occur from endogenous causes such as Graves' disease or toxic goiter, and from iatrogenic overtreatment with thyroid hormone. Endogenous subclinical thyrotoxicosis has been associated with atrial fibrillation in multiple studies, with the risk proportional to the degree of TSH suppression (19–24).
**This increased risk of atrial fibrillation appears to be similar when thyrotoxicosis stems from overtreatment with thyroid hormone supplementation (22).**
A recent pooled evaluation of 10 cohort studies covering 52,674 participants also found greater total and coronary heart disease mortality associated with subclinical hyperthyroidism (25). Finally, subclinical hyperthyroidism has also been associated with reduced bone mineral density and increased risk of fracture in women, although the data remain controversial (26)."
If you then go down to the end and look up reference (22) you will no doubt be able to read 'evidence' till it comes out of your ears. ( it's probably flawed , or not related to people treated with Levo .. frankly i can't be bothered to read it to see)
The main problem is that guideline makers refuse to see any difference between low TSH when on thyroid hormone replacement, and low TSH without thyroid hormone replacement .. (whereas diogenes research group have now shown that treatment with thyroid hormone alters the relationship between TSH and fT4/3 .. but guideline makers and top endo's have been choosing to ignore these findings for years ,although that is slowly changing.)
Anyway the result is that ANYONE with a low TSH, (whether or not they are taking thyroid hormones and regardless of whether fT4/fT3 are over range) get treated by guidelines as though they have the same risks as someone who has low TSH because of actual thyrotoxicosis .
For example see how this NHS page on "managing complications in hypothyroidism" .. directs Doctors straight to the hypERthyroidism section to discuss consequences of overtreatment with levo cks.nice.org.uk/topics/hypo... "If a person has suspected adverse effects or feels more unwell after starting LT4 therapy:
Consider possible under- or over-treatment with LT4. See the section on Complications for more information on possible consequences of under-treatment. See the CKS topic on Hyperthyroidism for more information on possible consequences of over-treatment."
Thankyou
What exactly is surpressed🤔
Are we all surpressed once taking t4
Jjeppy
A suppressed TSH is a level below 0.1mIU/L
endocrinologyadvisor.com/ho...
In most instances, the normal TSH range is approximately 0.4-4.5 mIU/L. A low TSH level is between 0.1-0.4 mIU/L and a suppressed TSH level is one below 0.1 mIU/L......
Thankyou. I see
Do you think or know that some are well with tsh at 3 or 4? Can this be the caseSo contradictory gp and lab ok it up to 4.5 endo says under 2
Tuk around a one
Jeppy
We tend to say on here that most Hypo patients feel best when TSH is below 1 with FT4 and FT3 in the upper part of their ranges if that is where you feel well although we have had a couple of people who feel better when their TSH is over 1 or even around 2 I think, so it's a very individual thing which we all have to identify and doctors ought to allow us to be individual not all fitting into a "one size fits all" scenario.
Yes absolutely. Iv hone back to basics i guess as still wandering up long path to check im thinking right
Thanks.
…mines never been under 2 and t4 was at top. Felt unwell
Started tiny t3 lio thought much better initially even on 6. Maybe physcological i know. But now banging headache two days running after couple of hrs of taking
NEVER had headaches ever
What are your tsh t4 and T3 levels and what are you taking and when, and how long have you been doing it? We might be able to help you optimise. I had headaches with T3 and it took me an age to get it right - but I did.
Hi. Just seen this sorry
Tsh 4.2
T4. 19. (12 - 22
T3. 4.1. ( 3.1 - 6.3)
Vits all ok. Vit d in middle so upped that 10 days ago
No antibodies this time
Your tsh is very high considering your t4 is pretty high. I would not have reduced your t4 though. Just change one thing at a time so you know what’s going on.
So… I found it really hard to take little bits of T3 (2.5/5/10) and I was trying to build up to 20 T3 a day. Eventually I just took the 20 in the morning and for the first time didn’t have a headache.
Now I’m not telling you to do that - it could be that over the weeks my body did just get used to it.
Nowadays I sometimes vary the amounts I take - either two or three lots a day and timings etc and my body doesn’t like any changes really. Far better to just decide a pattern and stick to it. Note to self!
I’m not sure I get what what you are taking - is it 6 quarters of 25 T3 a day?So 37.5 T3??? That’s a heck of a lot to start with. I think people start on 5 a day then 5 twice a day after a week then more after that. If you’re taking that much you’ll be way over meducated.
And WAS taking100 /125 bd. levo
For just over a week Just taken 6 ( quarter of 25). Of T3
And 100 of levo
Headaches two days
Hi, hope you're feeling better. Just wanted to say that when I started T3 (20mcg daily), I had a headache every day for 6 weeks & then it went away.
Really. Means a lot to hear. What am i like its only 6🤦♀️! Funny sensitive system im sure my fractured skull knocked something out of kilter lolThanks a lot x
Did it last long? Paracetamol?
Do you think or know that some are well with tsh at 3 or 4?
It would be unlikely, but not impossible, for someone to feel well with a TSH of 3 or 4, even if those levels are within the range. I've read that in some countries hypothyroidism is diagnosed with a TSH of 3 or over. The UK is much more sadistic in that respect - doctors here won't diagnose hypothyroidism until TSH is 10 or over.
The thing to realise is that using TSH isn't a very good way of diagnosing hypothyroidism or hyperthyroidism. It isn't very reliable. The best method of diagnosing and treating a thyroid problem (according to many patients) is by checking the Free T3 level. If Free T3 is too high for the patient then they will be or feel hyperthyroid (i.e. overactive). If Free T3 is to low for the patient then they will feel hypothyroid.
You might find it of interest to know the average TSH level of healthy people with no thyroid disease at different ages :
healthunlocked.com/thyroidu...
A personal example...
I've seen people declaring Free T4 and Free T3 levels on this forum that were similar to my own results when I first got (very reluctantly) diagnosed with "subclinical hypothyroidism". My TSH at the time was between 5 and 6. These other people declaring similar Free T4 and Free T3 to mine in one case had a TSH of about 10, and another had a TSH of about 30. But the people with a TSH of 10 or 30 are treated without argument. Some people are just a lot better at producing TSH than I am.
‘Some people better at producing tsh…….
Can that be a pituitary issue?
Thankyou. Il have a read at it
…notice older persons say ‘its just an age thing’. Lump it all together
Some of my elderly clients im sure may just be very hypo and sent down dementia route
Scary & sad
Can that be a pituitary issue?
Yes. TSH is not a thyroid hormone it is produced by the pituitary under instructions from the hypothalamus.
TSH stands for Thyroid Stimulating Hormone. An alternative name for TSH is Thyrotropin, and you will come across that name in a lot of research papers.
If you think about it, it is probably impossible for any organ (such as the thyroid) to stimulate itself (by producing Thyroid Stimulating Hormone).
The most common form of hypothyroidism is when the thyroid fails. It is called Primary Hypothyroidism.
Secondary Hypothyroidism occurs when the pituitary fails to produce sufficient Thyroid Stimulating Hormone.
Tertiary Hypothyroidism occurs when the hypothalamus fails to produce sufficient Thyrotropin Releasing Hormone (TRH).
Collectively, Secondary and Tertiary Hypothyroidism are referred to as Central Hypothyroidism.
Approx 90% of Hypothyroidism found in the UK is Primary Hypothyroidism, and this is usually caused by autoimmune conditions - mostly Hashimoto's Thyroiditis / Ord's Thyroiditis / Autoimmune Thyroiditis.
But doctors rarely diagnose Central Hypothyroidism - they say "Oh, it's very rare!" and effectively make it "vanish" and as a result guidelines very rarely even mention it and getting a diagnosis for it is very difficult.
In terms of the elderly, there was research done a few years ago where subjects with "subclinical hypothyroidism" (i.e. TSH between top of range and 10) were treated with the smallest amount of Levothyroxine possible to bring their TSH into the upper part of the TSH range. The subjects' symptoms didn't improve when TSH was between 3 and the top of range and so the researchers decided that treating hypothyroidism in the elderly wasn't worth it. It was a disgusting magic trick involving playing with numbers and the elderly were the dupes.
Since patients are classified by doctors as "elderly" once they reach 50 (ish) I would never let a doctor treat my hypothyroidism, because I am well over 50.
Thanks for all thatYes dreadful
I noted they werent even called up for checks when on levo
one lady couldnt get up for two days …..just old 🤦♀️!!! Give her soup etc
My voice wasnt welcome
Lovely to he assured as you
What were your t4 and t3 with tsh 5 roughlySame as me between 4.6 and 6.3
You might find this thread of interest :
healthunlocked.com/thyroidu...
I've never been overtly hypothyroid. I was first told my thyroid was "borderline underactive" in roughly 1990 but was told I needed no treatment. I got my first prescription for Levo over 20 years later, by which time my iron was in my boots and my cortisol was very high. But even then I was only considered to have "subclinical hypothyroidism".
SimilarBeen unwell ( joyless fatigued brain foggy since 1995)
Never realised meno or thyroid etc or diagnosed. Antidepressents shovef at me then for yes which i coukdnt tolerate
Diagnosed hypo 2016
Here i am still at it
In 2016 my numbers were almost the same as today ‘without’ any levo
This must mean something🤔 .
…what i hate mist is this me me me and like banging head on brickwall
Didnt want to be a DR
YES. Absolutely
You get almost brainwashed with the ‘numbers’.
Its the WHOLE thing to remember
Gluten free did remove over range antibodies
At my worst I was borderline vit D deficient and folate very low. Crawling up to bed. In 3 wks of supplementing i could again walk upstairs not crawl
They were scary days it shows how we improve - to consider gut absorption as any amount of supps wont absorb properly if the gut leaky Mitochondria
. Thankyou. You took emphasis off numbers .
No reply needed.
But thanks, yes its the whole thing and your T4 and t3 are meeting in the middle with good vits in second results
Pls do you mind pm me if you have improved further since then and how?
…i believe i may have pituitary thing from head trauma and unconscious but reading about it i am not very tolerant of lactose which says its a negative
What is suppressed TSH ?well ...
you will find different interpretations of 'supressed' . There is no absolutely correct ,or incorrect , answer to that question .
Some use the term literally ,to mean 'suppressed below the lowest amount that can be measured by the lab test used' ...... This will be written as < 0.005 (.. or <0.002 or <0.001 , depending on how low the test machine can go )
At the other end of the scale . some GP's might call anything below the bottom end of 'normal ' lab rage 'suppressed' .. (TSH ranges are usually approx [0.4 -4 .5] ..... so some people will think of 0.3 as suppressed)
In the middle ground.... eg. The paper that Jimh111 linked to, has decided to call:
TSH 0.04 - 0.4 'low but not suppressed'
and call <0.03 'suppressed'.
So basically when looking at studies claiming to have proof of risks associated with suppressed TSH .. you must first look into the fine detail of how that study actually categorised 'suppressed ' .. as they could mean any of the above 3 options.
And then what happens is .... you get GP's/Endo's /even NICE guidelines , saying "this study say's suppressed TSH causes increased risks .. your TSH is suppressed (at 0.05 )so you are at risk of 'x'...
....... But they didn't read it properly ... it actually says TSH 0.05 has no greater risk than TSH [0.4 -4 ] does.
Suppressed used to mean undetectable but as the assays got more and more sensitive it now refers to a very low TSH. I dislike the term 'suppressed' because in many cases TSH is not suppressed by high thyroid hormone it is very low because the pituitary is not adequately responding.
It is also very difficult to translate from one assay to another.
Jeppy . just to be clear .. when you say 'low thyroid ' ... do you mean 'low TSH levels' ?
or do you mean 'low thyroid hormones' (hypothyoidism).
They are very different .
I mean hypo with symptoms showing
I just need it as simpke as possAm i endangering bones & heart at tsh over 2’
Does my t3 need to be at or nearer top range
I darent raise t4 levo as im unwell and its at top
Now getting headaches on t3 lio 6
At a loss to know whats best
Abandoned by endo
May be one of these that just needs porcine so should i swop to metavive at least its affordable and accessable
Dr P said to but i got caught up with levo route
Has anybody had success that routeAnother question coming on eek
Im decrepit im stiff and in pain. I wasnt so bad at outset in 2016 so wonder if levo poisoning.
Yes. Iv reached that pointIf cant get patient named thing which doubt il take metavive its here anyway
…endo wrote to go that many do feel better on armour after he told me he was trialling me to then say he cant supply it now
Its soul desyrying
I’m not as knowledgeable as most on here, but found this article interesting
Is it the case that Levothyroxine causes a faster turn over in the process of creating new bone which can cause problems?(I don’t really know what I’m talking about here - I read something somewhere which I can’t remember- but maybe someone can help?
Im sorry i cant help there. Maybe do a new question. Good to know positive facts
THANKS to ALL x
Jeppy, could you have growth hormone deficiency? TSH and GH are both pituitary hormones, and if your pituitary is damaged, you can easily have a bunch of pituitary hormone deficiencies at the same time. (This happens particularly after a head injury or concussion.) Heart problems and osteoporosis are classic symptoms of growth hormone deficiency. See this link to NICE, paragraph 2.4. nice.org.uk/guidance/ta64/c...
To get diagnosed, I'd recommend you ask your endo to give you the glucagon stimulation test. The insulin tolerance test is even better, but more risky. There is also the GHRH+arginine test. Your endo may try to fob you off by measuring IGF-1 levels but these are normal in up to 65% of people with growth hormone deficiency. Replacing GH levels can make people feel dramatically better. See our website christopherlanetrust.org.uk for James Smith's story (personal stories) and Robert Hunter's story (Media pages). I do hope you check this out, I really think this might be your answer. Good luck!
O my word!!! Just joking about double fractured head. How fo you know all thisIl read when i get home
Endo only checked adrenal synachen and now says its possibly. chronic fatigue
Tsh 4.4
I have many of symptoms there always have but think many on hypo list anywayIl see if there is treatment anyway, im sure as over 60 im on a scrapheap as such but thankyou. Interesting.
What is GH
GH = Growth Hormone
helvella - Vade Mecum for Thyroid
The term vade mecum means:
1. A referential book such as a handbook or manual.
2. A useful object, constantly carried on one’s person.
Currently has the following sections:
Abbreviations and Acronyms
Alerts Amino Acids Antibodies Elements
Famous People with Thyroid Disease
Fine Dose Adjustment
Hydration: Anhydrous vs. Pentahydrate
Human Hormones
Iodine Content of Thyroid Hormones
Medicine Classifications
Pathology Handbooks
Pharma Contacts
Pharmacy Locations
Prescription Latin
Serious Shortage Protocol (SSP)
Tests (Summary)
Tests – LabTestsOnline
Thyroid Binding Proteins
Thyroid Diseases, Disorders and Syndromes
Thyroid Hormones
Thyroid Hormone Ratios
Thyroid Medicines
Units – Grams, Milligrams and Micrograms
Vitamins X-codes
Yellow Card Reports
Not everything is in this one document - my major medicines document is still separate!
Do you mean low thyroid, or low TSH? Doctors get all upset about low TSH, but TSH is not a thyroid hormone. It is a pituitary hormone. When the actual thyroid hormones (thyroxine (T4) and liothyronine (T3)) are low, there are terrible effects on the heart. Plenty of research on that:
ncbi.nlm.nih.gov/pmc/articl...
endocrinenews.endocrine.org...
health.harvard.edu/heart-he...
i asked somewhere far up in the post if Jeppy meant low TSH or low thyroid hormones ?.. Jeppy said "hypo with symptoms'
.as far as i can make out from previous answers .. jeppy has results (on Levo) of TSH 3/ 4 ish , but with fT4 near top of range ..and fT3 around 4 ish.
I think perhaps she has some concerns about TSH being 'high' relating to bone problems , (i think she has bone spurs on hip and had been offered an op for them)
But everyone (including me) originally thought she was asking for evidence about the usual 'low TSh /osteoporosis/AFib ' scenario .
Im here. Sorry i havnt heard of it
My tsh btw has just dropped to 1.9 after taking tiny t3 for over a week
It seems incredible to drop from 4.4 so very quick
& now whatTsh 1.9
T4 top of range
T3?
This while taking 100/125 levo and 6 of t3
I dont think i can take t4 higher and over
Of course all good to the docs with these numbers
Shoukd i drop levo and up t3?
As i have never taken T3 , i don't feel comfortable advising what you should do about dose .
Since this post has got so long and no one will see the question about your dose .. i think you should write a new post with your blood results [and ranges ] and dates of dose changes etc .... and symptoms ....... then you will get much better answers without people getting lost in this post where it's very hard for anyone to find any relevant information about your doses/symptoms/results .
But .. you can't tell anything much from a blood test that was done only a week after adding 6.25mcg T3.
The TSH is still reacting to that change .. it could end up anywhere after another week or so ,, and so could your fT3/4 results.
Understand. Havnt t3 result so will need that to put with it in meantime on wing & prayer i guess Thanks
Hello Jeppy,Interested to see that you asked this question .I am Graves hyperthyroid controlled by low dose Carbimazole and this year I have repeatedly had both Endocrine nurse and Consultant forcefully telling me that I am at risk of Atrial fibrillation and osteoporosis because my TSH is 0.01 (T4 & T3 in range ).
If I take more carbimazole to drive down T4 & T3 then my TSH rises (up to 1.47) and I feel truly awful - so my pituitary gland does work if it needs to for TSH ! (nodules and TSH antibodies are present too ).
I feel they are pressuring me to have Iodine ablation which I don't want . I even asked the endocrine nurse last week if she could direct me to some research papers to show what she was telling me was true and all she could say was that there was nothing recent, but "it was a well known fact "
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