After 18 years I have finally begun treating what is believed to be hypothyroidism. Not due to blood work, of course; ( I've had at least 3 normal results over the years) but finally through treatment of symptoms.
It seemed to all begin in my first pregnancy, but may well have been a problem before that. At any rate that's when I first started noticing significant difficulties. I had a lot of problems starting in the third trimester which rapidly picked up speed after I gave birth: high weight gain during the pregnancy, intractable insomnia (which has lasted to this very day), and depression.
Immediately following the birth I experienced rapid weight loss, high anxiety, an inability to eat or sleep enough and catastrophic thoughts, all of which were then diagnosed as severe postpartum depression and treated with a variety of antidepressants which all seemed to work for a short time before kicking out.
By the time my child was 2 years old I had been diagnosed with bipolar disorder and put on many different classes of psychiatric drugs, usually in combinations of five or six different prescriptions at a time.
Besides my OB gyn, who only reluctantly tested me after I told her that I had outer eyebrow loss, only one of the psychiatrists that I went to tested my thyroid. Each time the results came back "normal" and my psychiatric medication was increased. The psychiatrist who tested my thyroid put me on T3 without explaining why!
Unfortunately I was so out of it that I couldn't see the point in taking it, and just stopped one day because I was tired of taking so many medications without feeling any better. I still have no idea if T3 helped me or made things worse, because there were too many other distracting factors
I spent roughly 10 years in this unfortunate state and became almost completely disabled by both the pessimism of having such a serious psychiatric diagnosis and the severely debilitating side effects of the huge amount of medications that I was on.
I reached a crisis point around the time of a life-altering trauma and made the decision to come off all the drugs and stop seeing psychiatrists. I had been warned repeatedly about going off medication, but by that point I didn't really care what happened anymore because my life was simply not worth living.
After a decade without a single manic episode I have been able to determine that I had never needed most of the medications that I was prescribed and coerced into taking for so long. I am now a lifelong of psychiatry skeptic. I was diagnosed with four different psychiatric disorders with little to no credibility given to my physical symptoms or evidence for the diagnoses. I was just expected to just follow instructions for the rest of my life without any hope of feeling better or being "cured". In what other area of medicine with this be considered even remotely acceptable?
The problem is that even without all the interference of the unnecessary psychiatric drugs, I have still been living with varying levels of depression and exhaustion. I have to nap every day, sleep is still difficult, and with the onset of menopause my metabolism seems to have ground to a complete halt, causing me to put roughly 50 pounds on my small frame in about two years.
Among other distressing symptoms, I have terrible pains in my lower legs, both of my achilles tendons have calcified, and I have had heart palpitations and other severe menopausal symptoms. With the additional weight, injuries and exhaustion from still nightly insomnia, exercise is difficult if not impossible. Eating has unfortunately been my only outlet throughout it all😕.
Until recently my fear of psychiatrists and of GP's referring me back to them if I confided any of the symptoms that I just mentioned were enough to keep me away from doctors, but my situation has just become too unmanageable to ignore any longer.
Using the Internet I researched my symptoms and began taking nutritional supplements for both adrenal fatigue and hypothyroidism. I'm happy to say that my energy is slowly returning and I am feeling better in many ways, but I'm still far from being cured.
The psychological effects continue to linger and unfortunately affect me though, because after so many years of having it reinforced, it has not been easy to reject the idea that my problems are all in my head and caused only by my being lazy and gluttonous. Not having definitive blood work to prove that I have a thyroid problem does not help the situation.
Not surprisingly it is hard to feel good about myself when I feel the way I do and am the size that I am. I am pessimistic about the supplements ever creating enough positive traction to reverse this long-standing problem.
I guess what I'm looking for it is any kind of support from someone who may have been through this before and successfully reversed their situation. Any input it all would be greatly appreciated!
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Hi greygoose, thanks for your reply. I did post the results of my last "normal" blood work on this site a few months ago and was told by SeasideSally that they could be indicative of poor conversion. Vitamins and minerals were in normal ranges. I have done a saliva test for adrenal fatigue that was confirmed by the lab as late stage, so am not conflicted or ambiguous about that result.
The only thing that could have affected the outcome of the thyroid panel was that I had not fasted prior to it - and haven't before any of the others. I have never been asked to, and when I queried it was told that it didn't matter. I see that is not the opinion held by members of this site and will fast before the next round of bloodwork as a precaution.
I guess that the purpose of this thread was more for emotional than factual support. I have been around the block and back with these problems and it's hard for me to believe that they are not A) psychological or B) my own laziness and poor character or C) both. It would be nice to believe that if I can get on top of them that I might just be able to have a decent quality of life but after everything it sometimes feels out of my reach.
No, SeasideSusie didn't suggest you had a conversion problem, she suggested you could have Central hypo. Not the same thing. But, if you've finally got a diagnosis of hypo, then that's great. I take it that's quite recent. But, what are you taking for it? And how much?
You've got to realise that this is going to take a long time to sort out. There are no short cuts. But, you can do it! You've already taken the first step by getting diagnosed. The rest will follow - but slowly.
Doctors tend to encourage us to believe we are crazy and lazy. I spent my childhood being told I was stupid and lazy. I wasn't, I was hypo. You've got to believe in yourself, that's really important, and don't push yourself too hard. You aren't lazy, you are like a car with no oil in the engine. If you push yourself too hard, the block will crack and that will be the end of the engine (I speak from personal experience, here! ) So, be kind to yourself. Love your body, and look after it, and it will love you back.
Aww thanks greygoose, and so sorry that you have had to deal with this since childhood. What completely awful things to say to a child. How could they have possibly thought that would help? It's nothing more than verbal abuse. You must be very strong to overcome that kind of mistreatment and get to the truth of what made you ill from such a young age.
I am currently taking 90 mgs of porcine extract for hypothyroidism and 400 mgs of bovine extract for adrenaline fatigue. I have not been diagnosed with a blood test, just by treating my symptoms.
I am feeling better; I have steadier energy throughout the day and feel more motivated to get things done than I have for a long time. Unfortunately I am still not sleeping very well, am still in pain and haven't lost any weight to speak of. I will take what you said to heart though and give it time to work.
Finally I know that I said that this thread was for emotional support rather than facts, but can I ask what central hypothyroidism is vs poor conversion? This stuff still obviously really confuses me.
a) Primary hypo, where the problem is a failing thyroid gland, for whatever reason. So, you have high TSH and low Frees.
b) Central hypo, where the problem is either with the pituitary (secondary hypo) not producing enough TSH to stimulate the thyroid gland; or with the hypothalamus (tertiary hypo) not producing enough stimulating to the pituitary. So, with central hypo, you have low TSH and low Frees.
A conversion problem is when you can't convert T4 - the storage hormone - into T3 - the active hormone - for whatever reason. So, you have high FT4, and low FT3.
I was very sorry to read your awful story and we are aware that some people are never diagnosed properly.
First of all, the modern method isn't all that it should be due to the fact that since the 60's instead of doctors knowing all clinical symptoms they now know none and rely solely upon the blood test and the TSH might never have risen high enough to be diagnosed. Then the ongoing life of the patient is destroyed. Clinical symptoms are often diagnosed as nothing to do with the thyroid gland and in fact its hormones run our whole body from head to toe.
Postpartum phsychosis is possible and the following link gives info:-
Now that you are able to take your own health into your own hands I would recommend some blood tests and hope you are able to.
The test should be the earliest possible, fasting and don't take any medication until afterwards.
TSH, T4, T3, Free T4 and Free T3 and thyroid antibodies. B12, Vit D, iron, ferritin and folate.
Get a print-out of your results with the ranges (ranges are important as labs differ) and put on a new post for comments.
I shall also give a list of clinical symptoms which should be known by every single doctor or specialist of whatever they speciality they decide to follow:-
Thanks Shaw. While my PPD was severe, I don't think it could have been classified as psychosis because even though I was badly affected by anxiety and depression, I could still reason and wasn't having delusional thoughts or hearing voices.
I seemed to respond to therapy and antidepressants fairly well with two psychiatrists and three different medications, but each time they would stop working at higher and higher doses. At no point was I given a physical examination or bloodwork (with the exception of the skeptical obgyn who only did it because I asked and was all like see, I told you so when they came back in range) After the initial stabilization of my immediate postpartum symptoms my main complaints were insomnia, exhaustion and escalating weight gain. I cant help but wonder if I was hyper after giving birth, becoming hypo later on, but I don't know if that can happen without taking thyroid medication and can also be associated with antidepressant side effects.
The third psychiatrist was recommended to me for the insomnia because that was what was bothering me the most and after I told her my symptoms she pretty much immediately deemed me as having bipolar disorder - as in after one 15 minute intake meeting and a 3-5 minute follow up apt - but crucially I have no relatives with bipolar disorder and actually wanted to sleep! Apparently this is standard operating procedure for her...
I hate to say it, but after that diagnosis I unfortunately could have shown up in any GP's office growing an elephants trunk out of my forehead and have it attributed to my mental health issues - I have definitely been medically misdiagnosed for this reason at least twice since then, thyroid issues aside.
Thanks for the list of hypothyroid symptoms. It's very easy to see how they can be linked to so many other conditions. I have many of them and have associated them with anything from menopause to mental illnesses. It's so easy to second guess myself, but I hope that I'm on the right track now.
I do hope so as many on this forum have done just that - found the right track and not dependent upon doctors who wouldn't listen and would only prescribe levothyroxine which didn't improve their condition. Thousands do fine on levo if it is at an optimum and if doctor doesn't adjust doses according to the TSH alone. T4 is inactive and has to convert to T3 the only active thyroid hormone. The brain contains the most receptor cells so needs a good supply of T3 as well as the millions of receptor cells in our body,
Terrible story. My sympathy could never begin to address the awful way you have been treated. If you haven't already, get some private bloods done through Medichecks or Blue Horizon and post the numbers.
Thank you Steviecat, I appreciate your sympathy. It's taken a number of years and some good therapy but I have finally come to terms with the bipolar misdiagnosis and resulting physical neglect.
I am grateful to have found this site and other good resources because I can now finally help myself. I have recently had blood work but it was again in range so I have had to resort to just treating my symptoms.
I guess I was feeling a little sensitive about it all earlier when I read the original post, but when it comes down to it I'm not that fussy - I'll take feeling better over having proof any day!
The worst part of your story is that you have had early episodes of bipolar disorder which is quite closely linked to thyroid problems. In fact the reason you were eventually given T3 was to mitigate the bipolar episodes (T4 can also help). It's a tragedy that you weren't told what the T3 was for and how essential it is to help with the psychiatric problem. With the difficulties during pregnancy, doctors should have suspected thyroid problems straightaway - its so common to get thyroid problems in pregnancy and partly explains why the majority of sufferers are women. Postpartum some revert back to normal but many remain ill. I'm very sorry t hat you didn't get the treatment you desperately needed. Also thyroid parameters "in range" mean nothing. Its where in the range the results are and, are they right for you. We all have our individual placements in the ranges in health, and away from these, you cannot be optimally healthy.
Thanks Diogenes. I had no idea then, or even until very recently that thyroid problems are so common in women during pregnancy and after childbirth or that test results are so unreliable. No one ever mentioned hypothyroidism to me - it has literally been a process of elimination combined with worsening symptoms in the last couple of years that has led me to pursue it myself.
It's probably worth saying again that based on the diagnostic methods used and my own subsequent successful medication cessation, it is highly unlikely that I ever had bipolar disorder. The psychiatrist who didn't explain why he was prescribing me thyroid medication was just another of the many poor experiences that I had with that specialty.
I think that like so many people, due to timing and bias I fell victim to a system that was geared more towards diagnosing patients with psychiatric disorders than hormonal imbalances - I just had a more extreme experience than some. I have also had it drummed into my head that I alone am responsible for my energy levels and weight and not to rely on a medical diagnosis to bail me out. I certainly could be doing better with my diet, but I do not think I could have mitigated the other symptoms without the proper support. That is what I'm hoping to accomplish with the nutritional supplements.
Thank you for your advice and support. I really appreciate it.
Cortisol:DHEA-S Ratio 5.3 : 1 / ref 5.0 - 6.0 Ratio
I noticed you'd had few responses to your cortisol results, so I've copied them into here, and I thought I would do some waffling.
I'm assuming the Insomnia result is one you did in the middle of the night. I'm not familiar with what cortisol results should be during the night, but I would say a level of 2.1 is probably too high to get to sleep with. It really depends on what time the result is from and what your normal sleeping pattern is, and I don't know a source for optimal results during the night.
So, I'm going to stick with looking at the first 4 results.
states that the ideal DHEA level is (see page 4) :
The normal DHEA-S level is 2.0-10.0 ng/ml, and the ideal is 7.0-8.0 ng/ml.
If we decide that the ideal level is in the middle of 7 - 8 ng/mL then you are producing less than 50% of the ideal DHEA.
Other comments on page 4 of that last link :
Chronically depressed DHEA results in an imbalance in sex hormones.
So the likelihood is that you don't have good levels of sex hormones as well as everything else.
It was obvious before I started that your results were appalling. But when you look at optimal results it shows up just how appalling your results are. You are producing less than half of the cortisol that you should be producing throughout the day, evening and early part of the night, and less than half of the DHEA that you need. I'm not surprised you feel so awful, and I think you should be tested for Addison's Disease.
The way cortisol testing is done in the NHS (I'm assuming you live in the UK), is the doctor arranges for you to have a blood test checking for cortisol. I think for the most accurate results it should be done at 9am, but sometimes doctors will do a random cortisol.
If the result is low in range or below range then your doctor should arrange a Short Synacthen Test (SST) which is done in an outpatient clinic.
It is useful to know how the SST test should be done, how to prepare for it, what to expect and how to interpret it. See pages 68 - 70 in this document :
You should always do the SST test at 9am, and you should be as calm as possible throughout the test. Give yourself plenty of time to arrive, move calmly and slowly, speak as little as you can, don't read anything exciting while you wait. Often people doing the SST won't get an ACTH test done, so it would be worth checking before the day of the test that this will be included. (You don't want an argument with staff on the day of the test because it will skew results.) The test can't be interpreted properly without ACTH included.
If, despite your saliva test showing appalling levels, the results come out "okay", and the NHS refuses to treat, then you need to try and arrange to see Dr Barry Durrant-Peatfield if you can get to one of his clinics. He's a retired doctor who now treats people for thyroid and adrenal problems privately. I've never seen him myself, but everyone who meets him thinks he's wonderful. He wrote this book which I read when I was first starting to look into thyroid problems and I think it is excellent (and so do lots of other people!) :
You want the second edition. Be aware that there are lots of entries for the book on Amazon, and some people ask outrageous prices. So check carefully that you aren't getting ripped off.
I hope you get the help you so obviously need. Some people do treat their own low cortisol, so if you get nowhere with doctors and can't get an appointment with Dr Peatfield, don't despair, there is still plenty of hope!
Links on cortisol that are worth reading, although they may be hard to get through! I've already given link 1 above, but I thought it was worth repeating :
Wow, all I can say is thank you for going through my results and giving me the feedback that you have humanbean.
What you have to say is validating to say the least, but also a little scary. I am no longer someone who feels confident going to a GP and asking for tests and think that I would find requesting and getting through the process of having them done so stressful that it might be counterproductive! I hope to God that I don't have Addisons because I might be too avoidant to manage it properly.:(.
The good news is that as bad as my results from earlier in the year were, with the supplements I have been taking I am now feeling much better. Both Adrenal Fatigue and hypothyroidism are both such complex issues that I haven't really had the mental energy to tackle learning much about them, but now that I am feeling somewhat better I will take on the task of getting through the information. I will definitely have a look at the book recommendation and also the links that you have provided.
Finally, thank you for your kind wishes and comment. They are both very much appreciated!
Oh, I just thought of something to highlight. When you get any kind of cortisol or adrenal testing (blood or saliva) there are quite a few supplements and drugs which can skew the results. See these two lists :
I've done saliva testing for adrenals and I take 5-HTP for depression. 5-HTP raises cortisol. I refuse to stop 5-HTP for two weeks for a test. It simply isn't worth it. I just looked at the results and mentally adjusted them a little bit. 100% accuracy wasn't required since the results were only for me.
One annoying thing about both lists above is that neither of them tell you whether the things on the list raise cortisol or lower it. Unfortunately people have to do their own research on anything they might take from either list to determine whether it raises or lowers cortisol.
Hi and so sorry to hear your story, you are not alone, as I too began this journey in puberty, then it was worse at pregnancies, I had pre eclampsia all the waters went back into body, and yet thyroid never mentioned, I just wriggled on as refused the antidepressant routes, and I never felt right but just put face on as you do, All blew up again at meno, I think I swung from hulk to hyper my theory is your body tries to align it the wonderful thing that it is, anyway I'm here today after the worst 17 years of my lifetime, I probably lost my marriage through this, but life going in and tomorrow I'm being tested by keniesiologist to see if t3 is what body ia wanting right now ( haha I know it is deep down but my co fidence has gone a-wall and I've become quite phobic of late
I wish you masses of gold wishes now , we can do this, importsnt to remember the good times, there were many, and we were there at least to enjoy
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