Hello everyone! I'm new here, a person with hypothyroidism, and also a student that studies service design. Through my own experience, I found that my parents and my boyfriend can't understand why sometimes I have emotional moves/I cannot control my weight/I always feel tired. Sometimes they think I'm just too lazy. Thus, My experience inspired my current personal project, which aimed to explore what the status is that people with thyroid disease can be understood by family, friends, and society. So if you don't mind, could you please help me with this small research?
Do you feel you can be understood by people in your life or not? What have you experienced, and how do you feel about it?
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You should ask GP to test both Free T4 and Free T3. If you are taking levothyroxine (which is T4 alone and has to convert to T3). T4 is an inactive hormone and is supposed to convert to T3 as it is T3 which is the active thyroid hormone and brain and heart have the most T3 receptor cells.
Doctors seem to only look at a TSH result (they are very poorly trained it seems to me (as I couldn't get diagnosed, despite clear symptoms).
Unexplained weight gain is most probably due to levothyroxine (T4 alone) and your body isn't converting sufficient levothyroxine into T3 (the Active Hormone needed in all of our millions of T3 receptor cells.
Before 1892, hypo thyroid patients died as I believe there was no replacement hormones until then. From 1892 onwards 'Natural Dessicated Thyroid Hormones' were made from animals' thyroid glands and from then on people with a dysfunctional thyroid gland didn't die. There were no blood tests then, only the skill of doctors diagnosed and prescribed.
If you are in the UK, just a few months ago the 'powers that be' withdrew NDT from being prescribed as it was costing too much and as it also contained all of the hormones a healthy gland would do, i.e. T4, T3, Free T4, Free T3 and calcitonin many who was prescribed this were left without medication but were offered or switched to levothyroxine which is T4 alone. It has to convert to T3 but doesn't always suit hypo patients and they don't feel well.
I was far more unwell before I diagnosed myself, one day after GP phoned to say I had nothing wrong!
Needless to say, the majority on this forum do not recover their health on levothyroxine (or given insufficient dose). Many have sourced their own but options are becoming less and less.
For instance, patients used to be prescribed NDT or T3 (liothyronine) or T4/T3.
I don't understand why those who make the decisions to withdraw helpful thyroid hormones that suit a particular patient which causes immense stress and people trying to source their own thyroid hormones. It is a big worry because we cannot really rely upon sourcing it without problems occurring i.e. shortage of hormones.
Unexplained weight gain is common as sometimes people cannot convert T4 (levothyroxine) into sufficient T3 (liothyronine) as it is T3 which is the Active Thyroid hormone and heart and brain require the most.
Blood tests for hypo should always be at the very earliest. It is a fasting test and don't take levo or other thyroid hormones before the test but afterwards. A gap of 24 hours between last dose of levo and test is advised and take it afterwards.
Weight gain isn't your fault, it is due to being hypothyroid and being on an insufficient dose or levo doesn't raise metabolism sufficiently.
I must also state I'm not medically qualifed but had to diagnose myself.
Thank you, Shaws! These are really helpful suggestions! I will remember and follow your suggestions when taking the next blood test. Thank you so much!
Usually we take levo on an empty stomach when we get up with one full glass of water and wait an hour before eating. Food can interfere with the uptake of hormones.
If having a blood test make the appointment as early as possible, fasting (you can drink water) and allow a gap of 24 hours between last dose and test and take it afterwards.
Some prefer a bedtime dose - in that case if having a blood test next a.m. miss this and take after test and night dose as usual.
Also ask for B12, Vit D, iron, ferritin and folate to be checked. Everything should be optimum. Deficiencies may also cause symptoms.
Always get a print-out of your results, with the ranges, for your own records and post if you have a query.
My husband is very supportive. My boss wasn’t; I got made redundant. Whether those things were at all connected we will never know!
A friend said “is that even a thing”, which I put firmly into the “unsupportive” category.
Another very good friend can just about spot a bad day. My husband spots a bad day before I do, though. I think it varies a lot from person to person. Some of my friends, I suspect, think I am probably mad, running around telling them that I know more about my thyroid condition than my doctor... and that my latest dose from the endocrinologist is probably wrong. That sort of thing! I mean, it does sound as if I’m one small step away from declaring that the earth is flat and calling COVID fake news!
It’s a hard thing to get until you’ve experienced it yourself. I’d like to think I am an empathetic person but before experiencing this myself I think I was maybe only at 50% of my empathetic capacity. It’s made me understand past behaviour of family with the same problem and to be a whole lot more understanding and forgiving. (And possibly be a bit too empathetic in managerial capacity at work, but I’d rather than any day than the opposite... I should work on that balance though.)
I am lucky that my husband is a very accepting, patient person by nature, but I have, at times, got a bit frustrated at him not understanding how tired I am through no fault of my own. There is a page in Izabella Wentz’s book that describes things to loved ones - I showed that to him and it definitely helped.
Work-wise I have a lovely boss whose wife is muddling through the same issue. I’ve never gone in to massive detail or anything but he noticed I wasn’t eating gluten and mentioned his wife wasn’t and why, so I then felt comfortable to chat a little.
For me, taking a high dose B12 (after going gluten and dairy free) was a massive change to how I cared about feeling misunderstood / looking like a lazy so-and-so - from racing thoughts non-stop to a nice, clear mind after a week of supplementing I didn’t really care what anyone thought / felt / their reactions, ie wasn’t my own worst enemy anymore.
So, in short, yes I feel I have support and understanding from: (a) people in my life once I’ve provided a bit of information to them in a calm way; and (b) this forum because everyone just gets it and helps you get in a better place to feel calmer.
Thank you for sharing your experience pp! It is true that unless we have experienced similar situations we cannot totally understand each other. Best wishes!
I felt unsupported with the thyroid illness . I also have another type of slow growing cancer . Also felt unsupported about that .As I’ve grown older along with friends and family. Guess what , lots encounter their illnesses as lots do with age . Now they all get the difficulties of managing different illnesses !
My husband is suffering hot flushes due to treatment for prostate cancer . Now he gets it! I do feel sorry for him though.
In other words it just takes the experience and maturity for some people to gain that sort of compassion for others .
If you are lucky there are exceptions. Hope you find those for your journey.
This forum plays an important and knowledgeable roll in making me feel supported.
Thank you for sharing with us Gcart! Hope you feel better these days. It's nice for us to have such a forum to communicate with others. Good luck to you!
Although my partner is patient and tries to understand, I had one so-called friend who used to take the p*** out of my unexplained weight gain and loss of hair and eyebrows. And she was a nurse! Needless to say, she is no longer a friend.
Thank you grumpyold! Sometimes even a person with a medical educated background still cannot understand our feelings. But we can support each other here. Best wishes to you!
Yes, thank you SlowDragon! It may be a long way for me to find out what kind of treatment is really useful to me. And thank you for the article and theory you shared. It's helpful to my research because it provides a new angle for me. Best wishes!
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Can you help me understand numbers pls?
IF self-medicating, do you tell your GP?
Do YOU think this test result merits treatment?
\"Do You Think If You Just Did This...?\"
Range for tsh that you wonderful people think is optimum range 
