I’ve been posting a lot on here recently, I hope I’m not irritating anyone! I have a Q about long term damage from hypothyroidism.
I developed hypothyroidism at 13, I am now 31. My initial symptoms were severe fatigue, bad depression and extreme anxiety and panic attacks. I was heavily medicated for these conditions, but the symptoms were very strong and I lived every single day with those symptoms, they never ever went away. I have kind but conservative parents who didn’t take much notice of how much I had changed, I have many siblings and my parents are entrepreneurs so they hadn’t the time for it tbh.
At 21 it was discovered that I had hashi’s and an ultrasound found long term damage to the gland (endo estimated id likely had it for years.) I was very bewildered by all of this, I never questioned doctors and always took whatever medication I was given. I was told to take levothyroxine and that would be the end of it. Levothyroxine did nothing for me.
Now I am 31, and ridiculously I am only just now in the past 2 years realising that my chronic depression and anxiety is my untreated thyroid. I’ve been measuring my waking body temps on and off for the last 24 months and it is always 35.7 degrees (there abouts). Since beginning NDT (I tried synthetic t3 but my body just didn’t respond) my morning body temperature has risen to 36.1 - I’m amazed by this change. I know that is still too low, but I’m amazed that something may actually change. (I am only on 1.25 grains right now so I am hopeful temps will continue to rise as I raise the dose)
My question is this - if you spend 18 years undertreated to the point of those morning temps etc., can you expect to get back bodily functions lost to hypothyroidism? Ie. Will I ever ovulate if I likely never have? Will I ever really shrug off the psych problems if my brain chemistry has simply not been to that level of calm/happy in 18 years? Are some functions just simply irretrievable if my body has been hypothyroid for this long?
I'm not the person to offer a definitive answer to your question but what I can say from my own experience is that I suspect the longer hypothyroidism goes undetected and therefore untreated the greater are the chances that some irreversible damage will result!I was diagnosed over 20 years ago after pleading for a thyroid test....and after decades of poor health.
Subsequently treated with levo until 2017/18 by which time I could barely function
This is all detailed in my bio
Personal research eventually showed that I need high dose T3 only because I have a form of thyroid hormone resistance that resolved or eased many symptoms....but not all.
I'm now 77 and function reasonably well but I'm convinced my quality of life would be much better had I been correctly diagnosed in my late 20s when symptoms first appeared.
So...I would suggest that correct treatment as early as possible should overcome symptoms.
Long delayed correct treatmen like mine appears to have resulted in damage which is now only being partly resolved....having said that I do still notice very slight changes.
The body becomes deprived of cellular T3 and therein lies the problem.
T3 is the active thyroid hormone and for good health it needs to satuurate almost every cell in the body with a constant and adequate supply
Low cellular T3 = poor health!
If cellular level can be/is ( slowly) restored I'd say the outlook is good!
I reached the stage where I couldn't ( for example) read a book/ newspaper) because by the time I reached the bottom of the page I had no idea what I'd read at the top!
My memory is not as sharp as it might be, but, apart from recalling names serves me well now.
With the correct medication, and with time, I guess you will eventually be fine
Do you have any lab results you can share with us?
You are legally entitled to request these from your surgery ( reception not GP)
As you slowly titrate your dose things should improve.
Here, we are all in this thyroid mess together and the collective knowledge and experience of members is extensive ...so feel free to share your concerns and ask as many questions as you like. No need to apologise for doing so!
Someone here is bound to have travelled a similar journey and can help.
I wish I'd know 50 years ago what I now know....you are ahead of the game....keep going!
Yes, I think you're probably right. I have endured so much mental suffering that actually, I wouldn't mind cutting my losses and just embracing a solid, stable mood and some capacity to just enjoy my life, the minor details can be coped with. Even though from my perspective I feel like I've lost 17 years to hypothyroidism showing up as terrible mental health issues, I am still young and 31 is hopefully a good age for the body to still have a strong capacity to try its best to do what it can with the medication I'm now taking (if my body does take to it!)
Thanks so much for your kind words, means a lot to me
I agree as I found - thanks to the internet - Thyroiduk and eventually this forum which is helping others who've internet connection to restore their health and wellbeing.
I know for a fact that few doctors are aware of clinical symptoms - which used to be the criteria for being prescribed NDTs (natural dessicated thyroid hormones) removed for some unknown reason by the BTA as it saved thousands of lives from 1892 and was the first replacement that did so. It also contained all of the hormones a healthy thyroid gland would have.
When my TSH result was 100 - GP phoned to tell me I had no worries and blood test was fine! (I've put my journey on my 'page' and to read any members' histories click on their name and it takes you to their introductory page).
I echo everything DippyDame says - except that my stymptoms started at 8 years old, and I wasn't diagnosed until I was 55. But, I had Hashi's, so I wasn't constantly hypo.
I do believe some permenant damage has been done, although I couldn't tell you what, and I don't know about ovulation, but, I do know that most of my brain problems have gone - except a touch of anxiety if my levels drop, and I'm still dyslexic, and my spelling is atrocious - but the depression, claustrophobia and all the rest have gone. Some memory problems, but at 77 I think that's only to be expected. lol But the most important is the brainfog has completely disappeared.
So that makes at least three of us at that age greygoose ! Hidden , my story can be read at my Bio, but until I joined Thyroid UK, I was completely lost. It was the best thing I could have done and have learnt such a lot from the Website and this forum. For a long time I was taking Levothyroxine and then added T3 (Liothyronine), which did not really improve things for me. Eventually, in 2018 I went over to NDT and within 3 days felt a huge improvement. That particular NDT was eventually taken off the market, although for me it was perfect (and many others). NDT attainability is very erratic and I am now taking one from Germany which has to be specially made for each patient.
When you are able to post your results, then I am sure there will be more people to help you.
I also experienced no improvement on t4 and t3 or t3 only or t4 only. I am now on NDT and I think I am doing well, my temps suggest I am 😊 I ran into difficulties recently with anxiety but then someone kindly gave me a link to an article about ndt raising and I realised I was going too fast.
I sent off my bloods for analysis on Friday so I can report back then, but I certainly am hypo atm.
Btw - I get my NDT from “NP labs” through a very expensive functional endo in london I see privately, I’m not sure how I’ll financially manage in the future. At the moment I am just focusing on finding out if I can get well.
So glad you are finding a bit of relief from NDT. When WP Thyroid was taken off the market, I tried NP Thyroid, but this was not good at all, nor Armour or Erfa, so I am down to what I am taking now - Receptura. So far, so good, but I have had t raise my dose and think I might have to again; just by 1/4 grain each time. It is an expensive business, but I don't fancy the option without a Thyroid Gland! Wish you well.
Ah! I should have remembered to mention the childhood earache, sore throats tiredness, anxiety, tonsillectomy aged 4 etcI think I've had this all my life but only really became conscious of symptoms in my 20s onward when I realised " it wasn't just me" and something was far wrong.
Definitely time for a report greygoose ! I had completely forgot that Tonsils were the first line of defence. I am really beginning to think that lack of Vitamin D has been my downfall, even though we walked to and from school and again at lunchtime as we went home to dinner. At least an hour walking each day, plus playing in the garden. I didn't have a Tonsillectomy, but one Doctor thought I did have as my tonsils were in such a state.
I must admit I'm in two minds about tonsillectomies - mine was a huge success. I had one aged 10.
I'd had tonsillitis 2 or 3 times a year for several years and I was losing a lot of school time over it. Eventually I had tonsillitis four times in one year and I had hit the limit according to my doctor's rules and I was referred to hospital for tonsillectomy. I got my adenoids taken out as well, although I don't know what effect that has on health.
From that point onwards I had a severe infection in the throat three times over the next twelve years, and have never had another one since.
My tonsillitis pattern was similar to yours. However, despite no operation, mine too reduced. From this distance, I can't remember how many further infections I had but they always resolved quite easily with some antibiotics (or nothing, I think, once or twice).
Funny how rarely the word "adenoids" is used other than in this exact context!
Adenoidectomy more than doubles the relative risk of chronic obstructive pulmonary disorder and diseases of the upper respiratory tract, and nearly doubles the relative risk of conjunctivitis. Adenoidectomy without tonsillectomy increases the risk of otitis media (2 to 4-fold) and increases the risk of sinusitis.
Dido. The same exact story. DD you bring me back so many memories. My tonsils where removed twice. Supposedly after the first tonsillectomy at age 3 it grew back and I had a second tonsillectomy at age 6. Is it a wonder that thyroid issues followed?
I'll take the mood improvements any day. Just to feel calm and euthymic - my god I'd trade a limb for that. I just read your profile bio greygoose , laughed and cried, thanks for that.
Everyone has honestly been nothing but lovely! I just felt aware I am engaging a lot, but I only just discovered this forum so I think it’s honeymoon phase that I am spending so much time on it 😂
Sorry you are having problems, I have been on thyroxine nearly 70 years, only found out I had a under active thyroid because my mum pushed. She was told she was a fussing mother, had my tonsils out at three years old, was told it was that, never had my thyroid checked or dose increased during my childhood. So did not do well at school. Mum always thought I could have been born with the problem but it was never picked up. So I quite sympathise with you. It is a life long condition and I hope you finally get it sorted out so you are feeling well again. Best of luck.
I’ve been measuring my waking body temps on and off for the last 24 months and it is always 35.7 degrees (there abouts).
Some people find that their low temperature rises when they get hypothyroidism treated. Some people find nothing changes. I suspect, but am not sure, that the longer someone stays untreated for hypo the less likely it is for their temperature to return to "normal".
Something I have always wondered about, but haven't seen mentioned on the forum, is if people with hyperthyroidism have higher than normal body temperature before treatment.
My temp has always been on the low side of "normal" even with T3-only treatment....36C this morning
But, I'm not convinced body temp is the best guide to thyroid function
I prefer to use resting heart rate and general signs and symptoms eg no hand tremors.
Re hyperthyroidism/ temp
Your thyroid gland regulates your body temperature. When your thyroid gland makes more thyroid hormones than your body needs, your temperature is also likely to rise. As a result, you might find yourself extra sensitive to heat and perspiring 24/7.7 Jul 2022
I think age also plays a role. I know that you won’t ovulate if body temperature doesn’t rise enough, so I think fertile aged people have higher average body temperature than older people, children have higher body temps still. Everything I have read so far suggests that body temperature is a good indication of metabolic rate which is a good indication of thyroid function, but I could be wrong. I am undoubtedly noticing my body temps are rising and rising with every dose increase.
Yes I think that factors beyond thyroid impact body temperature, like menstrual cycle and age etc. as well as more transient states like drinking something hot or taking a shower etc.
But, I'm not convinced body temp is the best guide to thyroid function
I agree.
First, you have to achieve a consistent measuring technique.
Second, you have to take account of your environment.
Third, you have to think about what you have been doing - sitting? or hard exercise?
Even then, comparing your temperature with anyone else is unsatisfactory. Your thermometer, technique, environment and what you have been doing could be very different to those of someone else.
Not without use but of limited value for comparing with others.
For consistent body temp measurement you can use a Temp Drop. It’s a strap you wear around your upper arm and it takes your body temperature all night long and provides an average that it then plots on a graph. It is a fertility/protection device that people use. It won’t let me post a link 😭 but you can Google it.
I lost my temp drop in my house move 💔💔 but I measure my body temperature at the same time every morning, 3 times and take the average. I have been doing it for 26 months, the trend is very clear as I have plotted them on a graph - hypo I show low temps, improved thyroid function I show higher, it correlates with other symptoms being relieved and dose changes. My body temperature is actually not that susceptible to environmental factors. When I was badly hypo I would consistently show up 35.2/35.4, no matter the climate. But that is just me 😊
Also - I know that enzymes require optimal body temperatures to function (too low or high and they become denatured) so that makes me think body temperature is very important as a metric for thyroid and overall metabolic success.
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