Background to help you understand where I'm coming from: I've never had any diagnosis of thyroid issues, and never had any medication or hormone treatment. Just been feeling unwell for over 2 years. Dr's say blood tests are within range, so nothing to explain my symptoms, but I have suspected that my thyroid is perhaps struggling. I have posted blood test results on a previous thread, but this time I just wanted to ask a general question about symptoms rather than blood test results.
What I want to learn from all of you lovely people on this forum is how your symptoms work if you are hypothyroid? What I mean is, do you have all the classic symptoms (eg. fatigue, weight gain, dry skin, hair loss, cold intolerance, constipation, loss of outer third of eyebrow hair, etc), or only some of them?
I'm guessing there are potentially oodles of symptoms, and everyone might not have all of them, but would they usually have all the (so-called) typical symptoms - like the ones they list on health websites as common hypo symptoms?
Maybe my question should be: if you were hypothyroid, but not yet diagnosed and not on any medication/hormone treatment, would you expect to display all the typical hypo symptoms, or do people often only display some of those 'typical' symptoms?
For example, I have lost the outer third of my eyebrows, which I read was a classic sign of low thyroid levels, but I don't have dry skin. Does that make sense? I keep reading that dry skin is one of the typical hypo symptoms, but I don't have it. I do have a bunch of other symptoms, but not dry skin.
Sorry if this seems like a silly thing to ask. I'm just trying to get my head around this whole thyroid thing, and wanted to try and understand more about how symptoms might present themselves.
Thanks for your help with this.
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Overlooked
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if you were hypothyroid, but not yet diagnosed and not on any medication/hormone treatment, would you expect to display all the typical hypo symptoms, or do people often only display some of those 'typical' symptoms?
I don't think anybody would display all the symptoms of hypothyroidism. There are some lists which suggest there are 300 symptoms, but that has been inflated by using multiple synonyms to describe the same symptom.
Because so many of us have gut problems with thyroid disease, many of us end up with poor levels of nutrients (which doctors rarely test). Whichever stage of thyroid disease someone is in, getting the basic nutrient tests and optimising their levels will often make a huge difference mentally and physically. But doctors never think in terms of optimal they just think in terms of being in range. So they think a ferritin level of 13 when the range is 13 - 150 is just as good as a level of 150. This is, of course, 100% nonsense.
So, to help yourself to feel better it is essential to optimise nutrients where possible. Then it helps to give you the motivation and the energy to get your thyroid treated too.
The basic nutrients we always suggest optimising first are :
Vitamin D
Vitamin B12
Folate
Ferritin (iron stores) - it will help if a full iron panel is tested, not just ferritin. Iron can be high while ferritin is low. Iron can be low while ferritin is high. The best treatment for these two scenarios is not the same. In any mix of results it is important not to supplement to raise ferritin or iron dramatically above range. The body has no means of reliably getting rid of the excess and it can end up being deposited in the brain and other organs.
The above list of nutrients is the ones we suggest optimising first. Later, if testing is possible, there are some others - zinc, copper, selenium, iodine.
My T4 levels were below the reference range when I had my first blood test, so I think I had been going downhill for quite a while, but slowly so I hadn’t noticed until I got quite a way down. Then I was left untreated for 9 months (a year after I’d noticed I was ‘tired’).
Symptoms: tired (not sleepy tired, but lack of energy tired), everything was a massive effort; but my first realisation that something was wrong was when the blood donation people turned me away for 12 months due to low Hb levels.
One of the question doc asked me before first blood test was had I lost weight recently. I said the 5 Christmas pounds would usually have gone, but they were hanging around and invited their friends to join. I was 10lbs heavier than the previous year; so we can tick off weight gain. Since I’ve been on Levo another 10lbs have been added.
Dry skin; I’ve always had dry skin, so not much difference there.
Outer eyebrows; previous stuff was early in the year, during the summer my outer eyebrows disappeared. Earlier on, just after first blood test which showed elevated TSH and under range T4 a friend looked at me, said ‘you still have your eyebrows, it can’t be a thyroid thing’, so at that point they were still there.
Hair loss; I have so much hair! I go for haircuts and even though I’m going short to shorter there is so much hair on the floor after. However, since adding T3 I’ve noticed my leg/underarm hair is back to the levels I’ve had in the past, I had sort of noticed it getting less and finer but put that down to age. And that change happened at a glacial pace, not overnight, and with hair removal I hadn’t noticed the thinning.
Cold; yes freezing. But I’d managed to lose a fair bit of weight prior to being diagnosed (gym, diet, exercise, over the course of 3-4 years, about 5 years before diagnosis, so I don’t think it could be transient hyper periods while my thyroid was being attacked) and had been cold during the winters then due to loss of insulation. So really didn’t notice any difference.
Constipation; bran flakes in the morning and plenty of vegetables, never had that problem.
Thank you for this! I find it fascinating to read this sort of information, and it helps me to get a bit better picture of how things can play out.
Interesting what your friend said about your eyebrows. Mine are half gone now, but no doctor or endocrinologist thinks that is of any significance. I don't understand. I thought that was supposed to be a glaring sign of an underactive thyroid.
The most important thing to know is that the thyroid hormone T3 is needed by every one of the millions of cells in your body to function correctly. But, if you are hypo, and your T3 is low, they are obviously not all going to get enough.
The body tends to prioritise essential organs, like the heart and the brain, to get the lion's share of T3 a) because they need so much more than the other organs, and b) because they are essential for life. Something like the diaphragm is not essential to life because you can breath using stomach and rib cage muscles, so they body might shut down the receptors in that, to leave more T3 available for the brain, etc.
If certain cells are not getting enough hormone - or none at all - obviously that bit of the body is not going to function correctly/optimally, and that's causes the malfunctions that we call 'symptoms.
But every body proceeds differently, they don't all have the same priorities. So, everybody's symptom list will be individual to them. Add to that fact that some symptoms can be the same for both hypo and hyper, and the list becomes even more variable. For example, one hypo might have high blood pressure, cold intolerance and put on weight, whereas another might have low blood pressure, depression and heat intolerance. The variations are endless! And, of course, a lot of symptoms might not even be associated with thyroid in the mind of the sufferer so not reported.
So, when a doctor tells you that 'your symptoms are nothing to do with your thyroid', what he's really telling you is 'I have no idea what I'm talking about but it sounds good'. Never, ever believe that any symptom cannot be due to your thyroid because it can - and probably is!
Thank you, Greygoose, this is so helpful! I took your advice (from my previous thread) and put up a new post asking for recommendations for an Aussie-based doctor who understands thyroid function. Didn't get any responses. So I'm still searching. Found one or two doctors (online) who sound like they might be good, but are charging close to £300 (over $500 in Aussie dollars) per consultation, which is not feasible for me if it's going to be a regular occurrence. Also contacted the Australian Thyroid Foundation, but they said they could not give any recommendations for specific doctors. They suggested I ask someone I know who has thyroid issues, and ask them about their own doctor. I only know of one person (just an acquaintance) with thyroid issues, and she doesn't seem to be making good progress with her doctor (I asked her about it), so I'm not sure where that leaves me.
I'm afraid it leaves you like the rest of us. A doctor that understand thyroid function is so rare it's almost impossible to find. I only know of one I would trust - and that with a huge dose of salt - but he's in Paris. They just don't seem to learn anything about it in med school, and it's a universal problem, I'm afraid. Which is why so many of us self-treat. It's self-defence!
I had the usual symptoms, diagnosed about 35 years ago. Started on levothyroxine. Worked for 10 years, got symptoms back, needed T3. NHS GP said they take no notice of T3. Had it prescribed by private doctor, then carried on buying my own T3, then NDT. In about 2018 the NDT stopped working. I did not know this of course. One day I had the most horrendous back spasms. I could not walk without help. I think unless you experience them yourself you could not imagine what it was like. I had a blood test which showed T3 and T4 were below range and TSH (which never seems to rise) went from 0.01 to 1.8. Because TSH was still in range (GP taking no notice of it rising) said it could not be the thyroid. I took a 50mcg tablet of T3 (which I had a few put by for emergencies) and within an hour or two the pain had gone completely. So I would add extreme continual spasmodic back pain as a symptom.
Hm. I took an A4 list of symptoms with me when I went to see an NHS Professor of Endocrinology. He disliked my doing this and was very rude about it in his follow up letter to my GP. He obviously had no knowledge of hypothyroid symptoms, and I later discovered he was a diabetes specialist with little to zero experience/knowledge of thyroid issues.
Eventually I felt so very ill I asked my GP at that time what he felt was the matter with me if my thyroid was not a problem? He said that he and his partner GP were convinced I was hypothyroid, even though this as not showing up in my blood tests, and he offered me a trial of minimum dose levothyroxine.
Lo and behold! I had an immediate positive response, and felt better....my body had been desperate for thyroxine. The positives diminished, but again improved with subsequent increases.
Is it possible for you to ask your GP what he/she feels is wrong, with all your symptoms....and how you can be helped?
Thank you for your response. That's so good that you finally got help from your GP. I have been imagining a day when I actually feel better and have energy.... but it seems very unlikely at the moment.
Thanks for your suggestion to ask my GP what they think is wrong, given my symptoms. I have been doing this for the past two years with different GPs. One said she thought I must be depressed (she did not think it was my thyroid at all). Another said she believed I had some sort of sleep issue (after dismissing my suggestion that it might be my thyroid). Still another admitted she really had no idea (again, after dismissing my suggestion that it could be my thyroid), and she was just searching for someone to refer me to - she gave me a referral to a neurologist and a chronic fatigue clinic.
None of these GPs would consider that my thyroid might be involved, despite me asking about it specifically, and despite my FT3 and FT4 both being low. My TSH has never been out of range, so I think that probably helps them to dismiss my suggestion that it could be a struggling thyroid at play.
Been to an endocrinologist as well. He did lots of tests, again showing low FT3 and FT4, but an in-range TSH, so he declared that my results were "unremarkable", and said there is nothing to explain my symptoms. He sent me back to my GP and suggested that I could benefit from a chronic fatigue clinic.
I am still trying to find a doctor who can help me. So fatigued and feeling like it's not worth the effort, especially when it doesn't result in any progress. I know my situation is not unique in any way - I'm just one of a multitude who has had to go through this struggle. I am rather gobsmacked at the lack of understanding of thyroid function that the majority of the medical profession displays.
Thanks again for your contribution. It was good to read that there can be a positive ending, even after much struggling.
Hi Overlooked , just to sympathise with you, I'm in the same boat and going through the same struggles trying to find help, I'm undiagnosed and unmedicated. Like you I have very similar thyroid test results, just everything (TSH, T4, T3) is a little lower but still in range. Also like you, the investigations continue!
In answer to your question about symptoms - I have very dry skin but have not lost the outer third of my brows, so the other way round to you! Is this of significance, I'm not sure, seems when I read of other people's symptoms that it can vary a lot. For instance, I don't really struggle with my weight (I'm mid range for height and am careful with healthy eating) but I've just had a genetic test back and it said I am likely to weigh less than those of my height and age according to certain SNP's.
I am nearly always freezing...until I'm absolutely boiling, but it takes a lot to get there! The cold hands and feet only improve once the rest of me is sweating and my face is bright red. I do have horrible fatigue, have done for many years and have acquired a Fibro diagnosis.
Also, I read you other post about exercise. My tolerance has gone down and down. 15 years ago I went to the gym 4 times a week, yes it was hard work but it didn't floor me. Now I walk for 30 minutes a day, not fast, but it often makes me feel like I'm going to keel over. The idea of going to the gym, noooooo....
In September I was diagnosed anaemic with a very low ferritin level. No argument here, GP agreed I had iron deficiency with anaemia and it needed treating. It took for me to become anaemic for my chronic iron deficiency to be recognised ie. I was finally considered ill enough once my blood cells were affected but not until then. Ring a bell...not ill enough until levels measure really out of range 😡I read about the symptoms of iron deficiency, I have a lot of them. But there are some common symptoms I don't have that so many people do complain of with similar low levels like mine. This to my mind (like thyroid hormones) is another comparison of how the body rations out deficient vitamins/hormones differently in different people, prioritising some parts of the body over others hence not everyone experiences exactly the same set of symptoms, and maybe things go changing subtly over time.
Another example - I have PCOS. I was diagnosed with a high testosterone level as a teenager and also a scan showing many, many small cysts. Actually had an op to burst them but they came back. But, I DIDN'T display ALL the typical symptoms of PCOS, just some of them, and some were more minor and some more major, but it was very clear I have it from the tests.
The short answer - yes, I believe symptoms vary from person to person in different health conditions and also when other co-morbidities are present!
Good luck with your continued research and investigations, I wish you all the best with finding relief 😊 Thank goodness for the experienced people on here to guide us through these challenges!
Thank you for your response, Bertiepuss. It is interesting to read how the symptoms can vary, and even how some of the 'classic' symptoms might not be present in someone who has a particular condition.
I think I have been told so many times, "It's not your thyroid", that I start to over analyse everything and wonder if something like a lack of dry skin is a sign that I really don't have a thyroid issue.
Although, I have been told multiple times on this forum that my FT3 and FT4 levels are definitely low - and it is clear that many of those on this forum are very much more knowledgeable about thyroid function than the doctors I have consulted - so that has helped me to keep pursuing more clarity, and to pursue obtaining some sort of diagnosis/treatment.
I'm just so tired, physically and mentally, and I sometimes wonder whether I will make any progress, especially when it seems like most people have to battle to get a diagnosis, battle to get treatment, battle to get dosage increases, and forever have to battle to have their thyroid issue managed well.
Thanks again for your response, and for sharing your experience.
Aw, I'm sorry you are finding it so tough, I totally get it ☹️ Over the years I've developed health anxiety but it very much has been exacerbated by having to do battle to get help from doctors. I too find I have learnt more through reading about other people's experiences on this and other forums on HU. Keep plodding on...as we learn more we will hopefully find the right path to health improvements 🙏🤗
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