Hi all, I would be very grateful for your thoughts in my situation. As you can see below, I really thought this through and attended a few private endocrinologists (all there being top professionals on this) but still unclear of the strategy and wanted to stress test my concussions with the community here.
I am male, 43 years old. I first spotted 10 years ago via a blood test that my TSH was elevated (5.0) and T4 was 12.5. I am always against medication unless super strictly necessary so decided to do nothing as I have not had any obvious symptoms.
I have had continues tests during this 10 year period and my TSH was up and down (sometimes even being just below 4) but on majority of cases it was hoovering about 5.0 mark. My mother (in her 60s) has hypothyroidism and is on medication.
My latest TSH this year is 6.9 (I did two testes with different labs on different dates and the result is identical). Free T4 is 13 and T3 is 4.1. Anti-TPO is 605 and Anti-TG is 182. So my diagnosis is clearly Hashimoto, being subclinical hypothyroidism I do not have any classic symptoms other than perhaps tiredness (relative, I am exercising 5 days a week for an hour) and lower sex drive than in the past that I am a bit upset of course (but hey I am in my forties). So I feel not bad but I felt better in the past.
So my main question is:
1. What do I loose if I embark on Levotheroxine med for life from now and let’s assume I will have feel mild improvement of my tiredness and libido (let’s assume for the moment). I genuinely believe that if I have even a slight improvement then medication for life is absolutely worth it. Unless you tell me that I will have some side effects (I don’t see any!). Medication is extremally cheap and very easy to take.
2. What do I loose or win if I continue doing nothing. Am I actually winning anything by not being medicated (in a sense the strategy should be to delay medication unlss you have symptoms or you have TSH higher than 10). If the only thing I win is that I don’t have to put one tablet a day in myself, that’s not a win for me, I am happy to do it if there are no obvious side effects
My point being about the above questions is if my TSH is 7, my T4 is on the very low end, I feel fine but not optimal – why would I not take medication? In another words, it seems like a no brainer to do that even if the gain is marginal (or none). This is because the upside is absolutely worth it. Yes, there is a risk of being overmedicated by having a higher dose than necessary but I am obsessed about data so I will test myself every 3-4 months and therefore will be on the right dosage all the time. In fact, I may not overindulge myself of Levothyroxine and have a dose slightly lower to avoid being hype just in case.
So whilst I have not taken any drugs in my life (perhaps antibiotics when I was a kid) and resist taking any going forward, this particular situation really drives me towards treatment. My endocrinologist (private and GP) suggested to have a trial to see how it goes. But as I say even if I have marginal improvements, why should not be treated? From what I read, there is a consensus that high TSH may negatively affect cholesterol (I have slightly elevated) and testosterone (I have on a lower end) and many report improvements on both of those metrics.
It seems to me that treating the hypothyroidism (even subclinical) is a no brainer if you feel even small improvement (and perhaps even if no improvements as it will keep other hormones in balance). Ok, may be if someone has 4.5 there is an argument that you should not treat but if I have 7 (and it was always 5) why not wait until later?
Sorry for a long message but I really wanted to show the logic behind my dilemma as someone may have done a similar analysis. You can assume that my GP is fine with the treatment. So this post is not about persuading my GP to support me with treatment but more should I do that given the lack (arguably) of obvious downsides.
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Europeanboss
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Have you had vitamin D, folate, B12 and ferritin levels tested?
Likely to find some or all of these are low when hypothyroid, due to low stomach acid and poor nutrient absorption
Important to test these at least annually and maintain at optimal levels in order that levothyroxine works well
Levothyroxine is Ft4 and for good conversion of Ft4 to active hormone - Ft3 we need good vitamin levels
Very common to need to supplement vitamin D and vitamin B complex
Test first…..before starting any supplements
You should see cholesterol levels reduce as levothyroxine dose is increased
Levothyroxine doesn’t “top up” failing thyroid, it replaces it, so it’s necessary to be on high enough dose
Standard starter dose is 50mcg and dose is slowly increased upwards in 25mcg steps, retesting 6-8 weeks after any dose change or brand change in levothyroxine
Guidelines suggest likely eventual daily dose to be approximately 1.6mcg of levothyroxine per kilo of your weight per day
Important to keep good records of blood test results and how you feel on different brands and dosages
Many people find different brands of levothyroxine are not interchangeable
As I see it, there is cumulative damage from remaining hypothyroid.
For example, I had plantar fasciitis. With a TSH below 5.
When treated - and with time - that has resolved.
My eyesight deteriorated. (I've worn glasses since childhood.) And not just in terms of what a standard optician checks for. See this thread for discussion about some eyesight issues: healthunlocked.com/thyroidu...
When treated - and with time - that has largely resolved.
The rate of deterioration can be very slow. So slow, we simply do not notice day by day. Just, at some point, we realise that an issue has arrived.
I've quite often pointed that out as encouragement to those who have ongoing symptoms. It took years to get bad. It takes years to get better. And, however far you have progressed, there's always hope of some more improvement.
Here I'm pointing out that you might well stop deterioration by medicating. And highlighting that some things might not ever recover completely.
I did not have positive antibodies, so probably not autoimmune. Therefore not the same. But maybe similar enough.
thanks, interesting article. it does suggest that for subclinical hypo the effect of Levo treatement is is not clear. That's really the most fundamental issue for me. I am desperate to search for clinical data supporting that treatment on Levo for subclinical does help but almost annoyingly I cannot find any conclusie evidence. Having said that I still think why not to treat in case it fixes other hormones and there are no side effects. so it's almost like preventive measure rather than fixing the issue per se.
But you will be trying to treat present symptoms as already have slightly high cholesterol and low testosterone, both classic hypo symptoms.
A lot of the heart research applies to indirect cause. For instance low thyroid hormone raises bad cholesterol through slowed hepatic function and/or homocysteine driven by Vit B deficiencies. Nutrient and iron deficiencies are common with hypo that effects gut absorption (gastric acid) and how nutrients are used. Also many studies regarding T3 and not T4 on the heart. (Levo is T4 which is the inactive hormone that requires conversion within the body).
Hashi is progressive disease and super insidious meaning you will gather unnoticed symptom after symptom until you feel quite unwell. You also risk Hashi attacks when large amounts of WBC infiltrate the gland and release large amounts of hormone into the blood stream. Symptoms are hyper and flu like, as thyroid hormone levels dip and soar.
If you don't want to start Levo yet then trying to control the antibodies by calming the immune system can help slow progression. Common strategies are to adopt a g/f diet and supplement selenium that has thyroid hormone enhancing properties, and Vit D and fish oils for their natural anti-inflammatory properties.
My son is in the same place as you but has taken on preventative measures until such as time he has to medicate. A good read is The Root Cause by Isabella Wentz who is a pharmacist Hashi sufferer herself. Also anything by Datis Kharrizian.
Thabks Radd, super helpful. What's your sons TSH if I may ask and what's his age? It's interesting that he decided to wait and see so wnated go compare his results to mine.
Yes I do have higher cholesterol and Lower testosterone but my diet is gluten free and ultra healthy and I exercise. So these two biomarkers (rathet than classic symptoms) push me in a direction of being medicated.
Definitely worth a read. I had a student in her early 30s,who was able to stave off the problem with diet and exercise. She had a good endo. I wish I had gotten in with her. I was put straight onto levo and have been gaining weight slowly ecer since.
Europeanboss 'whilst I have not taken any drugs in my life (perhaps antibiotics when I was a kid) and resist taking any going forward,'
Do bear in mind that thyroid medication is not a 'drug' in the way we tend to use the term. We think of 'drugs' as being something unnatural and alien to the body. But thyroid medication isn't alien to the body. It's a replacement hormone. By taking it, you are simply giving your body the essential hormone that would normally be made by your thyroid gland.
Whilst you decide how to move forward. It would be an idea to get your vitamins checked. Ask your GP for vitamin blood tests; B12, folate, vitamin D and ferritin (included on an iron panel) If you already have current test results for these post them (on a separate post if you'd prefer) other forum members can comment on them for you.
If you do decide to start taking replacement hormones it is very important to have optimal vitamin levels so your body can make effective use of the Levothyroxine you'd be taking.
I'm fairly new to 'all things thyroid' and it has been and still is a huge learning curve for me. I was very naive and totally unaware of how important the thyroid and the central role it plays in many bodily systems.
The members here and forum admin all have much personal experience and the collective knowledge is extensive. You've come to the right place for guidance and support.
Best wishes.
Edited to add;
Literature review considering wether to treat subclinical hypothyroidism or not;
Thank you Hedgeree. I read the article you posted which is indeed on point. And this article again (as 90% of other articles) suggest that for those with TSH lower than 10 with no manifest symptoms treatment is not recommended and wait and see approach is better. I find it really odd on that the consensus on this form is so different from clinical trials highlighted in the articles. Also the article summerise the approach to treatment by various association and they all are eon TSH 10 threshold.
What arguably explains the resistance of GPS and endos to be enthusiastic when they are pushed for treatment.
I would look at a list of symptoms and see if many apply to yourself. There's a list on the site somewhere that you can consider and obviously many elsewhere on the internet.
The word I feel sums up thyroid issues is 'insidious' they can almost creep up on you without you realising what's happening.
I've had what I beleive to be thyroid issues for many years since I was a teenager and I'm now 50+ My issues were continually dismissed (medical gaslighting) or said to be caused by my other health issues which I naively accepted.
I can understand your hesitation if you feel you don't need treatment. To be honest I was actually scared once I was eventually prescribed levothyroxine as I'd for many years had very low hormone levels. They'd gone further below range after a partial thyroidectomy. But I was feeling very unwell and I knew I was finding it difficult to get through each day. So it was also a relief when I got my first prescription.
I realise your situation is very different to mine but I do understand not wanting to take thyroxine if it's not necessary. Also like many on the forum it can take a while to find the right brand of Levothyroxine and once prescribed sticking to that one. I've had to go very slowly and I started with a miniscule dose as I couldn't tolerate it (am still nowhere near my full dose yet but feel much improved to how I was prior)
If I find any other possibly relevant research I'll add it to my reply. Obviously you can read reams of research papers but eventually the final decision is your own.
In milder subclinical hypothyroidism, a wait-and-see strategy is advocated to see if normalization occurs.
No indication of appropriate time to wait. Advocating permanent hypothyroidism rather than treatment for everyone in whom their hypothyroid state does not spontaneously resolve.
However, individuals with cardiovascular risk and subclinical hypothyroidism may benefit from levothyroxine treatment.
With little guidance as to what constitutes cardiovascular risk. Indeed, they’ve already highlighted that TSH-suppressive levothyroxine is associated with cardiovascular risk! I suspect most of us had never had an ECG and don't get one as part of diagnosis.
Withholding levothyroxine could be advocated in mild forms when clinical improvement does not occur, or if the diagnosis is uncertain but follow-up is required.
Just stop the levothyroxine to provide follow-up. This makes little sense.
As written that seems to suggest simply stopping the prescription. No suggestion of tapering. No suggestion of a time to withhold.
Persisting symptoms of tiredness and/or weight gain sin someone with normalized thyroid-function test do not require an alternative thyroid medication.
An absolute blanket refusal to consider liothyronine (T3) treatment.
Other diagnosis, lifestyle factors, or life events may be the underlying cause.
If so, at least suggest some mechanisms, some approaches to identifying them.
Europeanboss,
It is very hard not to get a bit 'tin hat' about it. The lived experience of me, and 100,000 other people on this forum, is that thyroid disease care is atrocious.
Medics simply do not believe that thyroxine doesn't restore health in everyone.
Their opinions lead their research, so if they don't believe T3 works, why bother wasting their time and hard earned funding doing studies on it?
diogenes on this forum is a scientist in our corner! He and his team are doing excellent work to bring science to where lived experience is! helvella has a blog with all Diogenes papers on it.
In my opinion, thyroid disease treatment (or total lack of it) is one of the greatest medical scandals in human history.
Talking to a medic about T3 or NDT is like trying to talk to a flat earther. You'll get nowhere. Worse; they control your meds.
Like Helvella said, with hypothyroidism, you don't suddenly wake up one day freezing cold, fat, tired and with no eyebrows. It is a health issue that takes years to present itself enough to realise there is a problem.
It makes no sense to me that allowing the body to deteriorate to that point just to try and repair it with levo. Personally, I'd want to try and get in front of it and help support my body before it fails. It's the same theory as vaccinations, I guess.
Anyway, the dog is barking at feathers in the garden so best to sort that before the neighbours hex my house. 😂
interesting insight, thanks Witchinghour. So your view is that if you have TSH of 7, why not wait until it's 10 plus and pre-empt that sooner. If the consensus is that the body is indeed attached if TSH is elevated, I probably agree with you it makes sense to medicate.
Broadly speaking, I think if your TSH is rising, no matter how slowly, then you should be medicated. You have symptoms and they aren't going to get better on their own.
It seems absurd to me to allow the body to break before fixing it. 🤷🏻♀️
academic.oup.com/jcem/artic... Serum Thyroid-Stimulating Hormone Concentration and Morbidity from Cardiovascular Disease and Fractures in Patients on Long-Term Thyroxine Therapy
Robert W. Flynn, Sandra R. Bonellie, Roland T. Jung, Thomas M. MacDonald, Andrew D. Morris, Graham P. Leese
The risks for cardiovascular disease and bone fracture start to increase long before the TSH gets to 10, ..... (This paper is looking at people already taking levo , so its not direct evidence of risk in unmedicated people ~ i think the increase in risk is similar, but i don't have a paper to show it )
So as others have said ~ there are clear long term risks (to heart/ bones / cholesterol etc) of not medicating someone with a persistent TSH of 6/7..... even if they have not noticed any symptoms .
Most GP's are not keen to medicate until TSH gets to 10 simply because they haven't done any in depth research themselves ,and are just going off the guidelines which say '10'.
~ but guidelines are written for the entire population from a cost / benefit perspective , and as many people do not have any symptoms with subclinical hypo, they don't want to write a guideline that instructs GP's to put them all on life long replacement (which comes with free prescriptions for 'everything else' ) .
Guidelines are not very interested in 'prevention' , or in optimising how an individual feels .. they are looking at cost , and making sure they avoid the more severe consequences of hypothyroidism.(coma/ death/institutionalisation due to mental degeneration).
The downside to medicating subclinical hypo based on 'risk' while you still feel 'mostly well' is that you COULD feel worse on medication.
There is a logical reason for this ... The thyroid makes mainly T4 and just a little T3 .... (most T3 comes from conversion of T4 >>T3 in the rest of the body) .
It can adjust the amount of T3 it makes in response to demand ..... because maintaining T3 at stable levels is the body's main priority .
A higher TSH (due to lower fT4 levels ) is the trigger to ask the thyroid to make more T4 (if it is able to) , but it is also the trigger to ask the thyroid to increase the ratio of T3 that it makes. .. it's a kind of 'boost' function , to make sure the body has enough T3 even if T4 is low .
T3 is the active hormone (T4 is just an inactive transport / storage form of T3) .
So , as an unmedicated person with TSH 6 and lowish fT4 .. it is likely that your fT3 level is actually pretty good (which might be why you still feel basically ok at the moment)
once you take levo , the TSH will go down ... and you loose that 'T3 boost' from the thyroid , the thyroid stops trying so hard, because it thinks the problem has been solved .
But the problem is that the truly healthy thyroid would be producing a little bit of ready made T3.. but the thyroid 'on levo' probably won't give much T3 .. so all your T3 then has to come from conversion of T4 in the rest of the body. This is fine as long as your conversion is good enough .. but if it isn't .. you could end up with less T3 than you have now ... and not feel as well as you do at the moment .
Patients on T4 monotherapy (Levo) will usually end up with a relatively HIGHER T4 / a relatively LOWER T3/ and a relatively LOWER TSH than they had as healthy people... (i'll add some references later today )
As you clearly have autoimmune hypo .. it is likely that more of your thyroid will be damaged over the years to come .. so there may come a time when your symptoms make this decision much easier to make.
P.s for comparison we are all very different .. individual thyroid hormone profiles are unique.. i was really struggling with symptoms for 4 years (from age 32) while undiagnosed, untested ...i'd had to move job/ house as couldn't manage my previous active life anymore , was useless after about 5/6 pm .... wearing 5 layers in summer ... too exhausted to bother taking a coat off after i sat down .... sitting in the car for 20 minutes when i got home as too exhausted to bother getting out ... when they finally checked TSH it was 5.7 then 6.8 (T4 was in range but low).. but TPOab were 2499 then >3000 [0-50]
Starting levo improved me a lot . but it never made me 100% better , only ever about 75% .
It’s a difficult decision. No doubt about it. Especially considering your few symptoms. However hypothyroidism is a bit like watching a swan swimming. On the outside it can appear elegant and effortless but all the activity and effort is under the water and to all intents invisible. Twenty five years ago I developed heart symptoms for no reason a doctor could find. Arteries clear etc. Recently got my historical blood tests and found what was never revealed never to me because ‘subclinical’ treatment just did not exist and especially on my results. I could possibly had been saved the heart attack and the dreadful (ineffective treatment) post heart attack if subclinical treatment for symptoms had been considered. I wish you well in your process. You are so right to be asking questions.
The answer to this is I'm afraid, maybe, maybe not. SCH covers a whole panoply of potential diseases, of which upcoming hypothyroidism is one. A raised TSH may simply be a temporary uplift to correct deficient metabolism, and when balance has been achieved, normalises again. Or it may be early signal of hypothyroidism. We should remember a single TSH measurement is simply a snapshot of the level of a hormone whose levels vary throughout the day, and may be even more so, over time. I think about two thirds of patients with SCH normalise after a while. But one cannot distinguish those from the needful one third, as the sysptoms may be identical, but come from different reasons. Decision making with TSH I'm afraid is statistical, not personal. The cutoffs for treatment are based on an estimate where benefit and other problems statistically give the best solution (for treatment). But we are not statistics, and each person needs individual attention, not dismissing because of a number. There is'nt such a thing as blanket SCH.
The complicating factor is that there’s no consensus by medical professionals amongst themselves and thyroid patients on your question. As you pointed out, advice on here may differ from some research papers, but agree with other research papers. As you know not all research is equal. You’ll have to make an informed decision yourself and with your interest in data you seem to be well-suited to do so.
It is interesting to look at the history of thyroid treatment. In the past there was less focus on TSH and for many thyroid patients this lead to good health. The current complete dismissal of T3 and T4 variables in deciding treatment doesn’t seem to be based on a solid foundation. I’m just pointing this out because it might inform your judgement on the conflicting opinions.
This was the advice of my endocrinologist 4 years ago when I received a diagnosis of sub clinical hypothyroidism. I only received annual TSH tests. I would advise my past self to at the very least test for coeliac (as per NICE guidelines) and vitamin deficiencies. My vitamins have depleted and I’ve slowly started feeling worse until it affected my daily life. (Thyroid patients need optimal levels of vitamins and often require higher doses than normal population to get there). In the meantime my body will not have been able to maintain good health due to lack of thyroid and vitamin resources.
Your good health, exercise and diet could potentially mask how much your thyroid is struggling underneath. Because your body will have a lot of resources to try and patch things up as it were. One of the things I’d weigh up in my decision is what the effect of the damage of a struggling thyroid could be for your body. I’ve read from some people on this forum that it takes a long time to recover once treatment is started and most seem to never get back to full functioning as they were before. If thyroid treatment now could stop damage from occurring in the first place that must be a very positive thing.
Negatives of medication:
* Your discomfort with it.
* It might take a while to find correct doses and while you’re working to find it, you may at times feel more unwell than you do now. (See tattybogle’s advice)
Lastly, if you’re interested in data: I found a genetics tests rather illuminating. But it has mostly pointed to everything that was said on this forum.
Thanks, I can easily live with negatives being episodic overtreatment. As long as Levo does not trigger negative health consequences in the long term (assuming I will be doing frequent tests and having the right dose) treatment is a sensible strategy.
Wow you've lots to consider with the various responses. At the risk of adding to that, is a natural treatment of interest instead? Your comments on medication may suggest that.In the past, there's been discussion with some on here that such an approach alone can at least keep hypo in abeyance (as well as improvements alongside levo). And I've heard an eminent Nutritional Therapist say SCH can be treated naturally.
If of interest, I can supply contacts on here or by private message.
My research of clinical trials and conversations with top professionals in this area suggests that none of natural treatments will help significantly. So yes it may help a bit but realistically apart perhaps form gluten free diet and looking after vitamin D nothing will make a huge difference
You are actually absolutely right that some people manage to fix symptoms with vitamins - my wild guess is that it's because it's those deficiencies which cause symptoms and not TSH. In this case its a much safer alternative I suppose.
I am not sympathetic to GPS and endos. I imagine the dilemma they face. An unhealthy, often overweight, pre-diabetic inactive person comes in and says give me Levo it must be my TSH (5.0-7.0) and Americans treat when TSH is more than 3 so I will be better off. GP and endos do not see trials that support that and resist that. People then say they doctors in the UK stuck in dark ages and say give me Levo, then give me Levo plus T3 and if this does not work, give me Levo 300mg or crazy dose of T3. And GP is terrified with all of this with TSH being 5.0 that they opposed treatment in the first place. It's a terrible dilemma they are facing and I am not sure who is right. I know that a lot of us think doctors are stuck in dark ages but actually they are very clever people who have acess to data. But they also oppose for costs. But levo drug us pretty much free so not sure if the cost is a big concern. All papers that people shared today (that are invaluable BTW) suggest that treatment TSH below 10 is a super controversial topic as symptoms may be caused by something else so overtreatment is a big concern. And thats why I am sitting here agonising what to do as it seems that patients are really pushing hard the doctors to prescribe and it shows in the prescriptions. Despite what people say on this forum, prescriptions of Levo sky rocketed for the last 10 years. It's mainly because of pressure of the patients.
Despite having read on here multiple times that docs don't prescribe levo below a specific TSH figure (and ignore ft4, 3 etc), I don't really know why. The general view on here is that they're ignorant and that may certainly be the case as they are certainly ignorant in numerous medical areas imo!. Alternatively it may be because they are arrogant (which again they are!) and so feel they don't need to tell mere patients. More likely imo is that they can't successfully treat the condition in its early stages (which I think you've indicated). 2 different examples of this are listed below. Medic arrogance means they won't tell you but there's scientific evidence to support 1 at least (a Cochrane study):
1. Mild hypertension. Medics state that patients treat NATURALLY up to 159/80. This is likely because they know BP meds don't help mortality at those levels.
2. Kidney disease. They generally don't even inform patients up to stage 3 eg my mum, as realistically dialysis is the only direct treatment and that is much later. But NATURAL treatment CAN successfully treat at the early stages eg my mum.
So maybe the eminent Nutritional Therapist I mentioned earlier is correct?
No I have not pressed the doctor, if anything it was the opposite. I know that I have elvevated TSH for 10 years and have lots of anti bodies but what i don't know if if makes sense to simply start treatment even without treatment. GP would be happy to support me but I am trying to figure out about negatives. Such a difficult dilemma...
Europeanboss.. from a personal perpsective .. re. patients pressuring Doctors to prescribe levo for subclinical hypo ....i was prescribed levo with TSH 5.7 / 6.8 .. by an NHS GP in 2003 , i was not pressuring them for it .. or even asking for it .. as i didn't even know what a thyroid was or what it did.... i was not overweight or unhealthy, i was the right weight and physically very fit/ strong ... just knackered and cold and felt bloody awful with a weirdly lumpy nose /eyes and slow reflexes and not enough eyebrows ,and tendonitis, and bursitis .... and TPOab in the thousands.
one of the preconceived ideas that meant i wasn't even tested for thyroid problems for 4 years post partum was that apparently i didn't look hypothyroid cos i wasn't overweight ..... So, is pressure from overweight/ unhealthy /pushy patients responsible for the huge increase in prescribing for sub clinical hypo ? i dunno . but it certainly wasn't the case for me.
I feel I’m in a similar boat to yourself , and difficult knowing what to do next .. my TSH is fairly low (seems to hang around 4) but I‘m very symptomatic and this has been affecting my quality of life for a long time .. in my case Doctors won’t even consider treating a TSH of 4 , but I that leaves me stuck where to go next . My plan so far is to start with a very low dose of natural dedicated thyroid , gradually taper up and monitor symptoms and periodically blood test (thyroid panel , b12, ferritin etc) .. So far I’m a week in with micro doses of desiccated Thyroid it so too early to report one way or the other , if anything felt a bit more tense / slightly anxious since starting but I guess that could be normal starting out on any replacement (I’m completely new to this so just sharing my experience, still not sure if it’s a good idea!)
I am surprised you are considering to go "off piste" with natutal T3 before checking how Levo works with your body. Levo in vast majority of case actually work so I would consider using that one unless there are other circumstances. People suggest checking vitamins as this what can cause symptoms (so why fix thyroid of this is not the cause).
It’s a good point, but the reality is I can’t get Levo without a prescription and I can try alleviate with natural forms , additionally many accounts indicated a better response with desiccated thyroid which appears more widely tolerated accounting for subsets of people , may or may not be me , with T4-> T3 conversion issues (I’m no expert here at all , just reading up on NCBI , pubmed, Reddit etc)
Vitamins D , B , Ferritin I have checked and levels are all optimal , unfortunately still feeling crap for a good few years
Makes sense. Levo is so readily available in many countries that £20 may give you an annual supply. Not that I advertise that, just know that some people do that. If Levo in the right dosage has zero side effects I find it difficult to reconsile so much opposition from doctors in the UK. Having said that, Levo prescription has sky rocketed so one may argue that it's not underprescribed as we might believe.
re. downsides and periods of overmedication...yes it does happen and it can be pretty nasty .. but it's not very common ... it's happened to me once in 20yrs .
whereas being undermedicated and feeling unwell as a result , or having a GP adjust dose badly and going from feeling pretty ok to feeling horrible as a result , or falling out with doctors about dose when you try to stand your ground in order to stay on the dose that you feel well on .. these are much more common downsides... these have happened to me about 4 times in the last 5 years.
deciding what 'the right dose' actually is.. this is one of the biggest problems of being on Levo ..... very often your own observations of what dose feels best will not be the same as the opinion of the GP as what dose he is willing to prescribe.
eg . you'll be trucking along quite nicely .. you'll have an annual GP review , and then get text from God /GP saying "reduce your dose to x or else you'll die".. so you do .. and as a direct result of doing what you were told (often based on just the TSH level) .... you find your life /job / libido etc has gone down the pan again .
Being overmedicated occasionally is the least of your worries on levo .
Uptime, I was 4.6 (range 0-5) when went on a small dose of levo (25mcg). - it changed my life - I was leaving the house and forgettting why by time I reached the garden gate. Initial GP pushed back, said I was subclinical and to come back "in a year". I persisted with another GP who was more enlightened as she had lost her thyroid 20 years prior and she put me on it. Dont give up, be persistent with healthcare provider, keep a health diary and be prepared to have robust exchange with GP based on risks for and not taking levo and ultimately what harm can a trial do. Before TSH they diagnosed hashi on symtpoms, ask for this.
Did you have a conversation with your doc as to methods to lower your TPO and TG antibodies? Even if you decide to go on levo, why let destruction of your thyroid continue? Yes, it is true that the "average" allopathic doc gives levo as treatment for Hashi's, but ... that is not addressing the Root Cause. Which reminds me: consider reading the "Root Cause" book by Izabella Wentz.
FYI: my "Root Cause" was gluten. TPO antibodies went to zero after 18 months off gluten. I did have to go on lio+levo because autoimmunity had been raging in my body for decades, but that does not alter the fact that allowing autoimmunity to continue is still destructive. Try to find a practitioner who understands environmental medicine. I doubt any GP can help you with that.
The number of health problems I had before returning to euthyroid status, was startling. Take a look at hypothyroidmom.com's list of all 300+ possible hypothyroid symptoms.
P.S.: I failed to mention that autoimmunity against the thyroid is frequently accompanied by destruction of the villi in your gut, when you are consuming something that is toxic to you. So even if taking levo seems to fix your immediate problem, you do NOT want to let gut destruction continue.
thank you, i am on gluten free dieat already (not due to thyroid, just generally) but all endos I spoke to (very clever people who are really into detail) told me the diet will not help with Hashi (it will of course help generally but not to lower TSH) and this is what I also see from clinical trials.
My point wasn't to imply that a GF diet fixes everything, or is the best choice for you. My point is that a good doctor has ways of finding out what your toxicities are. The only reason I went GF is that an ND (private pay) used TTG and GliadinAb tests to prove that gluten was my problem. A similar thing happened to a friend who has lupus; a smart doctor was able to determine via testing, that nightshades were causing her Lupus flares. Unfortunately, the average doctor does not have the ability, or financial incentive, to identify the factor(s) that cause a specific type of autoimmunity.
if was caused by stress i would recommend not taking any medication and fixing the stress problem and seeing if that works. it worked for friends of mine, thyroid went back to normal
I think stress is not an issue, TSH bouncing between 5 and 7 is a conistent story for me for the last 10 years so it's more the underlying problem (I think).
I was borderline with high antibodies like you and about the same age (but female). Mine was picked up because I tried to donate blood and it turned out I was anaemic. I didn't think I was unwell, but I did feel tired. However I had young children and kept myself quite fit swimming and running, so blamed it on that.
My GP wanted to treat me anyway as he said it would only get worse - he was hypothyroid himself. I was given iron tablets and levothyroxine and within a week I felt like I had more energy. I hadn't realised how under par I was.
I can understand your reticence to medicate. I prefer not to take medicines myself too, but I'd be inclined to trial levothyroxine and see how you feel. It's great that you have a GP who is supportive especially in the current situation.
I’m afraid I can’t remember. I think it was around 4 or 5 or possibly 6. It was just inside the ‘normal’ range by 1 I think, or possibly at the boundary.
I’ve had no issues at all with Levothyroxine. Unlike many on here, I can tolerate any brand and just take it at breakfast time. I do try to take any other medication away from it by an hour or two. I was on 75micrograms for a while but have been on 100 for many years now.
Hi, all I can do is to tell you my situation at the moment. 6 years ago my annual blood tests I have as I have Sjögren’s showed that my thyroid was slightly low and I had thyroid antibodies. My GP said she could give me thyroxine or I could see how I went. The antibodies to me, having suffered with Sjögren’s and most of my mums family having thyroid problems, including my mum, seemed to make my decision to take levothyroxine easier as I thought I was on the slippery slope. It was difficult to judge if I had symptoms as Sjögren’s symptoms overlap, but I hadn’t gained any weight.
Fast forward 6 years of levothyroxine, I’ve ended up on 100 mcg. As I was gaining weight throughout taking levo and didn’t feel great I saw an endocrinologist for the first time. He shocked me by saying he wanted me to stop taking levo as he didn’t think I needed it. He said my thyroid antibodies are very low and that doesn’t justify medication.
I stopped taking levo that day and three weeks on I’m ok. It’s early days and as long as I keep ok I’m seeing him again three months from stopping levo to see how I am and my blood test results.
I’m older than you, 67 and female, but with no family history of osteopenia or osteoporosis I suffered a fractured spine 18 months ago following a fall. I had a bone density scan and my bones had lost some density. I didn’t realise that levo can affect your bones and who knows I may have suffered the fracture in any case, but when I asked the endo about my bones in stopping levo he said they would be better, not worse.
Don’t get me wrong, I’m not medical in any way and the thyroid uk ladies have far more knowledge than me,but with hindsight in my case I wish I hadn’t started with levo as the endo said if I’d seen him he wouldn’t have given it to me. Obviously it saves the life of many people to take levo but if you really don’t need it,with my experience I wouldn’t take it. I hope this helps as I too hate any form of medication and need lots of proof before I take it but, unfortunately, I thought levo would nip what I thought was a looming thyroid problem in the bud. I’ve yet to see my blood results in a couple of months or how I’ll continue to be without levo but if my endo says all’s fine without it I’ll be very happy. Hope this helps.
hi, I’m sorry I haven’t got a note of my blood tests on starting levo but my TSH just before stopping it was a slightly overmedicated 0.02, even though my weight has slowly crept up albeit over 6 years - I’ve gained over a stone now and a lot of it is on my midriff and abdomen.
20 years ago or even 10 I would not have hesitated a minute to tell you to go on Levo fast.
Now- not so sure. My whole family is on thyroxine (plus T3 in some cases). NO ONE is healthy. NO ONES adjustment phase was easy or short. Basically, we are all of us still trying for a good dosage. After 23/19/7/6 years respectively. I put my loved ones on thyroxine because of massive symptoms. Really bad ones. If you can do sports in spite of low thyroid, great. Exactly what no one of us could do while hypo.
Problem is when you start, your pituitary goes down in its production of TSH and you may for some time end up with even less hormone than now. Then you up thyroxine and conversion gets worse.
Interesting insight, thanks Nettecologne. So you point is that unless I have specific reasons/symptoms you would not jump into it as it then becomes an entire process of managing it with some unknowns down the road. I can do sports for 6 days a week and consider myself fit but TSH of 7 with anti bodies (for 10 years now) really bothers me so am agonising on whether to pre-empt this or wait for another (hopefully) 10 years before symptoms kick in. The clinical literature seem to suggest that in my case I should wait until symptoms kick in and this forum seem to be split in half. My mother only started taking Levo after 60 and before this she was subclinical.
Your whole family - were they subclinical from day 1 or they were full blown hypo from the start?
That is exactly the problem-none of us had a raised TSH. Mine was 2,48 at its highest, but my FT4 was below range and I had had HORRIBLE hypo symptoms for over 2 years. My doc told my I was manifestly hypo and I was. My DH and my kids would never have been treated as all "in the range". I said then and I say it now- as mad as I was and am, that docs do not treat people, they treat labs, as bad ist the idea of treating labs when you feel rather well. I had a list as long as a page of symptoms, there never was a doubt I needed thyroid. My family? Still not sure about them. And it is terribly hard to balance thyroid hormones, and it defnitely does not feel like healthy.
Symptoms DH: Fatigue, so bad he went to sleep sitting talking to me, memory deficit, irritable (usually extremely calm), strange illnesses all the time (skin mostly, all went away), instead of tan he got sunburn, usually a southern type, so tans deeply and easily.
Son: Irritable, very pale (is rather dark-skinned normally), instead of a tan he got sunburn, black circles under eyes, tired all the time, not even the energy to play board games with his friends, even that was just a chore, university levels dropped massively (he usually is A+ at every damn thing). Thank God I caught it in time and he has since successfully finished two masters (A+ of course;).
Daughter: Irritable, social skills dropped, fear of walking through a room alone, depressed.
I think the answer is simple. You are looking for an intellectual clarity that does not exist in thyroid disease management nor possibly any healthcare topic. It appears you can deeply debate the topic from both sides beyond a level of most pasionate or experienced people and are at risk of over-intellectualising a decision that can only be saisfied from your own lived experience.
When you have finished debating yourself if you do decide to start a dose of levo be advised that initial experiences can be mixed for first couple of months until the hormone stabilises and there can be some side effects for example I get periodic myopathy with levo which affects my tennis. Good luck.
This is a fair comment that I am arguably going too far over agonising over it and it's true that collective knowledge on this forum is simply gold of you want to be clued up on this condition. I perhaps deliberately went deeper in order to be tested by very knowledgeable community on this forum and also hopefully give some food for thought for those who will look at this thread for years to come.
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