The main symptoms are:
Increased sensitivity to cold, Constipation. Pale, dry skin, A puffy face and swelling, Hoarse voice and trouble swallowing, elevated blood cholesterol level, weight gain occurring infrequently, Muscle aches, tenderness and stiffness, especially in your shoulders and hips, Pain and stiffness in your joints and swelling in your knees or the small joints in your hands (almost like carpal tunnel) and feet, Muscle weakness (quadriceps and triceps), Excessive or prolonged menstrual bleeding (menorrhagia) => to no flow when completely hypo, Depression (Anxiety, Panic attacks.. etc)
Without treatment, signs and symptoms gradually become more severe and your thyroid gland may become enlarged (goiter). In addition, you may become more forgetful, your thought processes may slow, or you may feel depressed. Early on if you flux between hyper and hypo thyroid you can experience symptoms of either hypo or hyperthyroidism.. this is me, but I am more hypo every day.
Here is the kicker.. Left untreated, an underactive thyroid gland caused by Hashimoto's disease can lead to a number of health problems:
* Goiter. Constant stimulation of your thyroid to release more hormones may cause the gland to become enlarged, a condition known as goiter. Although generally not uncomfortable, a large goiter can affect your appearance and may interfere with swallowing or breathing. If the size is interfering with breathing it may be causing sleep apnea.. sleep apnea = sleep deprivation.. extreme sleep deprivation can cause everything from hallucinations to much much more when severe and chronic.
* Heart problems. Hashimoto's disease also may be associated with an increased risk of heart disease, primarily because high levels of low-density lipoprotein (LDL) cholesterol the "bad" cholesterol can occur in people with an underactive thyroid gland (hypothyroidism). Hypothyroidism caused by Hashimoto's disease also can lead to an enlarged heart and, in rare cases, heart failure. I am currently doing the cardiologist walk for this.. stress testing all the scans and currently I am wearing a 48 hour Holter heart monitor.. it itches because I am have allergic reactions to the adhesives and I still have 24 hours to go! Started out with a bad ticker.. so I was expecting this one.
* Mental health issues. Depression may occur early in Hashimoto's disease and may become more severe over time. Hashimoto's disease can also cause sexual desire (libido) to decrease in both men and women and can lead to slowed mental functioning. Depression leads to anxiety, panic attacks and more.. I have anxiety maybe mild depression, but being a mom helps.. I can not let it take hold and have to work through it.. no medications for me.. head is foggy enough as is..
* Myxedema. This rare, life-threatening condition can develop due to long-term hypothyroidism as a result of untreated Hashimoto's disease. Its signs and symptoms include intense cold intolerance and drowsiness followed by profound lethargy and unconsciousness. A myxedema coma may be triggered by sedatives, infection or other stress on your body. Myxedema requires immediate emergency medical treatment.
* Birth defects. Babies born to women with untreated Hashimoto's disease may have a higher risk of birth defects than may babies born to healthy mothers. Doctors have long known that these children are more prone to intellectual and developmental problems. There may be a link between hypothyroid pregnancies and birth defects, such as cleft palate. A connection also exists between hypothyroid pregnancies and heart, brain and kidney problems in infants. However, if any of these conditions are diagnosed within the first few months of a baby's life, chances of normal development are excellent. This was and is of concern for me as my husband and I discuss the merits of having a second child.
Well I may have done the WTMI thing again.. but this is my listing.. once hypothyroid all the hypothyroid symptoms are possible with Hashi's as well.
If we learn by our mistakes, I am working on one hell of an education.
as your likely aware, I'm new to this *********** space, but I'd just like to say a huge thank-you to you and others such as midwest1 for sharing this most invaluable information with others (like me) who are confused and anxious about all these weird symptoms we're feeling and but are not quite able to adequatley articulate how we are affected or to preciesley decribe these symtoms. A huge debt of relief is due to you all.
I am only recently diagnosed as Hashi, but looking in hindsight, have had symptoms for about 6 years, the past three have been horrible years of physical and mental incapacity. Please see my other posts - 'waratah'
Currently, experiencing quite debilitating 'Dementia', anxiety, depression, and short periods of what I can only describe as being mild psychoses.
I am going to print out yor summary of symptoms below and keep them for reference.
I'm not a particularly religious person, but bless you all , Regards, waratah
hi..before i was diagnosed with hashi's....i was a total basketcase. people around me thought i was really losing my mind. i never went to the doctor about the way i felt, but all those thoughts that ran thru my head...was really scary. as soon as my doctor found out it was hashi's and was put on meds, those scary thoughts went away. so have you been checked yet? do get ur levels checked....goodluck.
Hi parcarp, iona 23 & mkgbrook,
Gee, it's interesting that so many Hashi people are affected by these psychological symptoms. I've been doing a bit of research lately and most of the 'official information' (whatever that is???) listing Hashi symptoms, kind of puts 'poor concentration', 'mood swings', 'confusion', etc. . . towards the bottom of the listing. Whilst, for me, these psycological symptoms are the ones that are really giving me the greatest grief.
Now, I'm no scientific expert, but in my personal experience, whilst nearly all the usual Hashi symptoms are present, the MOST DEBILITATING SYMPTOMS have been the PSYCHOLOGICAL / NEUROLOGICAL ones (I do not take drugs, but I am feeling heavily stoned-off-my-face which is absolutley driving me nutso!) So with this in mind, I did a bit of further research and came across some information written by a lady named Beverly Seminara who has been busy documenting a condition that appears to be a progression of prolific Hashimoto's antibodies. (if you did a ****** search you'll find her research pretty easily) The condition is named Hashimoto's Encephalopathy aka: HE (gee I do hope that I spelt it correctly) where excessive Hashi antibodies begin to directly attack the sufferers brain. This in turn causes all sorts of rather nasty symptoms such as dementia, memory loss, psychosis, confusion, disorientation, myoclonus, headaches, coma, etc. etc. etc. and the list just goes on and on. But . . . .
The point I'm trying to make it that whilst this presents as a rather serious progression of Hashimoto's, the suffererer can actually have 'normal range' T4 & T3, and even TSH too. This means that the Hashi person can actually be euthyroid and not necessarily hypo-thyroid, but could just as well be hypo-thyroid too - seems to depend on how much original thyroid is left in the system. What appears to make the all important difference in 'HE' is the actual saturation level of Hashimoto Antibodies in the sufferers system. In this case the Thyroglobulin and Perioxidase Ab antibodies are extremely high, so high that the gremlins begin attacking other body tissues where thyroid molecules like to live. Apparently, this condition is quite rare indeed, and very few medico's know of it's existence. Beverly is hoping to change this situation partly by having an MD co-author her research work. Anyway you can read it at your leisure when ready.
Now, I've no idea what is actually considered to be a 'high' anti-body reading, but last week my TG Ab was 2,500+, and the week before that were 1,924 whatever that means???
- & TSH 4.5, and Free T3 and Free T4 low, but still just within normal range.
My concern is that I'm having 'symptoms' that are more inclined to align with those of Hashimoto's Encephalopathy' i.e. dementia, confusion, disorientation, mild psychosis, anxiety, memory loss, dizzyness, serious cognitive difficultities, headaches, some myoclonus (involuntary muscle movements / jerks- like when you get a chill down your spine), uncoordinated & clumsy, unsteadyness & unbalanced, numbness / tingling across face, fatigue, difficulty understading speech etc. etc. etc.
The people here on this Thyroid board are soooo knowlegeable, so can I ask an open question to all others (even if not yet on this thread) if other euthyroid and hypo-thyroid Hashimoto's people are experiencing the same thing? The reason I ask is that I'm only recently diagnosed as Hashimoto's, am still officially considered euthyroid based on lab results, but feeling quite unwell for quite some time (both physically & mentally) and kind of feeling like I'm having a difficult time trying to figure out what symptoms are normal and what symptoms are a bit abnormal.
Please don't be shy about responding, I'd really like to hear your stories so that I might begin to contruct a bit of a mind map about the types of symptoms, their degree of severity, occurrences & duration etc. etc.
Ummm, the Hashimoto's Encephalopathy (HE) articles by Beverly Seminara are well worth a look too.
Thank you once again, bless to all, waratah
Last edited by waratah; 09-28-2007 at 05:28 AM.
Reason: need to add information
I like to look at it this way. I was 10x the normal antibody limit a few months ago, about to have to go back for my quarterly check..
TG Ab was 2,500+ and the week before that were 1,924
My normal TGAB limit was <20.. so that puts youjumping from ~100x the normal limit to 125x GREATER THAN the normal top range in a weeks time. What does this mean? Your Hashi's is rolling out of control and needs to be checked with medication! Oh, I so wish I could put a wrist lock on your MD til they wrote you a script.. mood swings right? All my thyroid right?
What are your TPOAb? I bet they are even higher. TPOAb and TGAb are both lHashi's antibodies and attack goons. Also a TSH of 4.5 is not normal. Print out the documentation and your symptoms argue for a trial period of hormones do something.. but do not back off. You need treatment NOW. Talk to a GP anyone.. make them listen, pity, fear you.. what ever.. just get some medication. I hate limit huggers I really do.
If we learn by our mistakes, I am working on one hell of an education.
Hi mkgbrook, nice to hear from you again.
"Limit huggers" are like lablers (I had to re-spell that one for the norther-hemisphere USA spellcheck) i.e labels help Dr.s make sense of symptoms. If symptoms fit with label, then this is the Dr.s CHOSEN label. And . . . .Whoa betide any other differing label impinging upon this first label.
You also make mention of 'getting somone to listen'.
Well I've been doing my level best to descibe to MD's how I'm feeling, symptoms etc, and I must be doing something very wrong, because when I speak they don't seem to hear me say "I feel very very unwell", "I am not a hypocondriac", "I do not make up symptoms", - but I do feel quite unwell and am feeling x, y, & z.
I am an educated middle age woman who is currently reduced to a demented brain injured mildly psychotic dementia patient. All the Hashimoto symptoms are present, but the psychological / neurological / cognitive ones are really giving me the greatest grief & getting me quite distressed.
Next week I'm off to see the shrink, but feel I've made an error of judgement here, in that after some preliminary reading of Beverly Seminara's research on Hashimoto's Encephalopathy, perhaps a neurologist would have been a more appropriate choice. This afternoon, I then phoned docs office & tried to get my MD of 12+ years to give me a Neurologist referal before she goes on one month holiday, but she did not call me back today.
Hmmm, not too sure what to do next as this weekend is Labour Day long weekend ( offices closed for 3 days). I guess, all I can do is to just wait until next week, the go and see any Dr. and get referal to Neurologist.
Thanks for your feedback, it is very much appreciated, if you have anything to add, please don't hesitate to post. Regards, waratah
I got the Endo to refer me to a neuro for migraines and functional analysis.. I refuse to go to a shrink for the purpose they will likely label me with something that fits my symptoms and the other MDs can latch on and say... not your thyroid it is this..
As is with my allergies and sleep apnea on my medical record I am getting that look like.. that is a symptom exzyma or rosecea not your thyroid. Humm.. well I didn't have the skin disorders before my pregnancy.. and that makes me think they are partly attributed to my thyroid. I can not wait to go hypo enough for meds so I can show them how my symptoms clear up.. and thus give them a well deserved I told you so. Don't they love passing the buck?
As to getting your referral.. since she didn't call you back.. do a walk in stand at the desk waiting for a referral maneuver.. it is so easy to be put off on the phone.. they tend not to do it when you stand there and refuse to move until you get what you want. After all if you can not work because of said issue.. you might as well be with the MD in case something does happen right. Camp out and refuse to leave. I have done this.. normally only takes once. Then you call next time and make sure to mention that you will be there at xx time for your answer.
In my opinion an MD should be willing to send you off for a second opinion.. if you request it and a complication arise because they refused your request.. they are LIABLE. The love that word.. gives them chills. It is your money and peace of mind. Is your GP gone yet? If not go to her office and stand there.. looking at the office staff. It tends to speed things up if you can get the appropriate glare going.. makes the paper pushers worried. Sometimes it is the paper pusher that slow down the referral and message passing process. If I do not get a call back in 24 hours.. I call continually until I get a response then if a hour or so gets me no where.. I move in for the face to face.
As too them not listening to your pleas.. well have you tried the just try me on a minimal dosage 50 of T4? My thyroid is dying and will die off eventually.. so I will be on hormones eventually. I am having all these symptoms and would like for you to work with me and see if they are thyroid dependent. The only way to tell for sure is to take the drugs. They won't hurt me.. so why the heck not humor me and see if it helps... if not I will patiently wait.. and if it does you have a foot in the door to drag more drug therapy out of them. I am sure the meds will work for you.
If we learn by our mistakes, I am working on one hell of an education.
Hi mkgbrook, many thanks to you for all your earlier support. I've been on 100mcg of Thyroixine, recently droped to 50 mcg - and all my Hashimtoto symptoms are now beginning to return, including those pesky psycholgical symptoms. I'm currently doing the rounds with the 'lady shrink' and taking 300mg Effexor + 75mg Seroquel at present.
Blood test taken this morning, results in 10 days, we'll see what Vit D & TSH are currently doing then, many thnks to you again, waratah
Hi Waratah - I can appreciate all you have been through as i too had gone undiagnosed for at least 7 years and likely around 10 years (based on figures on my old blood tests from 1998).
In Jan 2001 i began experiencing abnormal hair shedding. Later that year my menstrual cycles went crazy. I always got my period every 5 weeks without fail. It's always been that way for me from basically my teens (i'm 41 now). I had tried to fall pregnant without success for a number of years. Doctors just wanted to push me into IVF and i refused. Makes me wonder how many IVF babies, whose mums and dads have no reason not to be able to have a baby, actually might have undiagnosed thyroid issues. I know they tested my thyroid, but only TSH and even that back then was 3.48. High enough in my opinion to test further i should think.
In april 2006 i 'accidentally' discovered i was anemic. I woke up during the night with mysterious pelvic pains and went to my gp. They did a blood test and sent me for a pelvic internal and external ultrasound. US was perfect. Blood test showed up low blood stores with ferretin of 8. This is when i began trying to lift my ferretin and learnt it can lead to hair loss. Did this for about a year and got sick of it.
My last resort and last ditch effort was finding a Trichologist. I did some research on the net and backed myself up with some knowledge and went shopping for a Trichologist. The one who seemed to know his stuff is based in two locations in Sydney (Balmain and Sutherland) You can read his information on the net if you look up his name Tony Pearce and you can add Trichologist if you like for an easier search.
This Trichologist got my ferretin level back up to 61 (high ferretin is advisal for thyroid sufferers) and he also discovered my Hashimotos and slight gluten intolerance. He then sent me to a doctor at the Uni of NSW and he has been a total God send. He has done tests which no Endo will do right off the bat. He actually did ALL relevant testing prior to medicating me.
Lucky i found both these two doctors or i don't know where i'd be now. In the later stages, prior to being diagnosed, i sometimes felt like i was halucinating. I'd be in my car at a red light and there would be other cars infront of me and i'd halucinate that traffic had started moving and i'd move my foot to the accelerator and realise just in time that traffic was still waiting for the light to change to green. I did have a minor car accident back in January this year which doesn't surprise me. Lucky i just hit the guys rear bumper infront of me and he was so nice about it too. thank God for car insurance too
I was living my days in a constant fog, felt like i'd been hit by a bus, would feel i was a total write-off from about 10am onwards, could sleep or sit around doing nothing for days on end, figuring out what clothing to put on was an effort and too much brain strain. When i'd make tea/coffee in the morning i'd mix up all the bottle and container lids for sugar, coffee, milk etc. I thought i was losing it. Also my eyes were puffy, stinging, sore and tired.
All my symptoms appeared to centre around the head and eyes, lethargy, foggy thinking, hair shedding, hormonal imbalance and difficulty absorbing iron, vitamin D and iodine.
Later after more tests with the University doctor we found out my digestive system was not digesting protein due to insufficient pancreatic enzymes and protein was left sort of decomposing in my system and caused thyroid inflamation. He also found out i had low cortisol and therefore bad adrenal function, hormonal imbalance and a slow metabolism and phase 2 liver detox wasnt good and i was still having a continuation of malabsorbtion issues with the Vit D and iron and unable to retain iodine.
I only began meds in mid april and i do feel so much better. I know some things will take time to fix eg; menstrual cycle and hair shedding.
Some of the common symptoms eg; cold hands/feet, noticeable weight gain and lack of sexual libido i never did experience. When i'd read the hypo and hyper symptoms lists i never really felt i belonged totally in either, but on both lists. Now that i know more about Hashi's i know you can have symptoms off of both lists.
By the way, on my very last blood test the lab noted that all my results were "consistent with a euthyroid state". Shows how much they know. The sooner these medical people stop focusing 100% on a single figure and start listening to how we feel and running the relevant tests we might all start feeling a bit more normal a lot earler in the piece. To think if the Endo i visited some years ago had run an antibodies test i could have been receiving treatment way back.
Hi Audrey-B, nice to hear all your Hashimoto information.
Consistent and within normal limits - hey?
Hashimoto's antibodies greater than x 100 normal limit - hey?
Symptoms . . . . . Oh Yes! ME TOO!
Apologies for my sarcasim, but like you I've had quite a number of less than fruitful experiences with a range of Sydney's leading med specialists. (well actually, just two! - but this was enough to discourage me too!)
I'm just so thankful that other people are so willing to share their stories in an enlightening way on this message board. It is heartening to listen and read to the stories of others, that so clearly demonstrate that Hashimoto's is more than whether a person's blood work is within "normal range" - Oh heck, if I hear that phrase again (within normal range I may not be responsible for what may occur) lol . . . .
BTW: what was the name of the Endo you saw? And did you also see a Neuro?
I was recommended to see Prof. Boyages in Sydney. He's regarded as a bit of guru, publishing academic papers on Endocrine Disorders, if you g _ _ __ _ le his name you'll come across a heap of medical articles, academic papers and press relaeases etc. etc.
Though I do have to say, whilst he is supremely well respected in medical circles, he's also very busy. And I don't think I've ever been insulted quite so many times as in each of my three x 5 minute consults. I didn't know if I wanted to rip out his throat or burst into tears! So I did neither, and I just sat there gobbsmacked by his objectionable comments such as on one late and rainy night, "perhaps it is your perfectionistic driven personality that is the problem". Oh brother, such is the life of a euthyroid Hashimoto's person.
Yes, I am also euthyroid, but only just,
TSH 4.5, ToAB >2,500 etc. etc and was taking 100mcg Thyroxine daily. About 2-3 months back, the new GP () reduced this to 50mcg due to horrendous and escallating ANXIETY + psychological umm . . . . . disturbance? (my chosen word - for being more than a bit unhinged i.e crazy due to unrelenting anxiety) So reduced Thyroxine has led to return of Hashimoto symptoms. Fatigue, inability to concentrate, cold, can't warm up, intestinal upset, dry hair & nails, swollen tongue, menstrual irregularity, confusion, foggy, aches in hips, lower back and knees, severe foot cramps, dry sandy eyes, hard cuticals (sorry about spelling) and um . . . . emotionally unstable.
I went off to see the "lady shrink" - she knows which drugs to try that will dampen that darstadlley ANXIETY - and after a few trys - thankfully it has subsided to a manageable level. So long as I don't try to do too much, the ANXIETY seems to stay just below the intollerable threshold. (Last weekend, I tried to lift a small yacht mast, and the anxiety went through the roof again - so something is still a bit awry somewhere. But, I'm still very thankful that I can still work 3 days p/w.
On another note, this afternoon a friend just dropped in to ask me to sign a petition in support of the work of a Belgian doctor named Thiery Hertoghe. He's apparently doing a lot of work on hypothyroidism, but not using reference intervals to guide his work, but rather is using clinical presentation - particularly for symptoms of hypothyroidism related to people diagnosed with CFS and ME. My friend's sister has two sons who were diagnosed with ME, and after 12+ years, the sister knows more about ME than the littany of doctors she and her sons have visited. The only doctor who appeared to help was this Dr Thiery Hertoghe in Belgium. So it might be interesting to follow this up.
Please continue to share your Hashimoto's stories. It is just so refreshing to meet others who have the same or similar experiences. And to know that whilst I might actually be going truly stark raving bonkers, there's probably a very good reason why this is so.
The physcological symptoms of thyroid disease have been the most debilitating for me too...absolutely horrible....no words to describe it.
Anyway, as a sydneysider I thought I'd point you in the direction of a VERY highly recommended GP (not Endo) in Chatswood. People fly in from all over Australia to see her apparently as she specialises in Hormones (thyroid especially) and is also a Hashi sufferer herself. She also prescribes Armour if thats something you were interested in looking into. She tests for absolutely everything...adrenals etc etc etc
Her name is Dr Ludka Berkowksi - a simple search should give you lots of info on her.
I'm going to see her in August and I really cant wait. Shes not cheap though - around $300 for first appt, but if she is someone who can bring back my old self...it will be money very well spent thats for sure.
Total Thyroidectomy Oct 06 due to Massive Multi Nodular Goiter and Hashi
2 x Caltrate
Hey Sydney-sider! Thanks for your post. I'll difinitely look up Dr Ludka Berkowski, (and what a beautiful name). I do hope she can help[ to "get your old self back" and assist a return to a life that is familiar and rewarding. And as a fellow Hashi sufferer, she is quite possibly a wealth of knowledge. I have to say that I tried Armour tyroid, but the ratio of T4:T3 was too potent for my system. I do not have a T3 conversion problem, just raging anti-bodies >2,500, marginal euthyroid status, Vit D & Iron deficiency.
Anyway, About 6 months ago, I started with a new GP over at Asquith who also does the 90 minute $300 first appointment, then subsequent hourly at $150. I have to say that I've found this arrangement far preferable to those 7-10 minute in-out appointments common to commercial medical centres seemingly obsessed with productivity and profit. Anyway, hormones, hormones, hormones and mental health.
Well, like you I've also found the psychological symptoms associated with hashimoto's the most debilitating of all. What is your experience in talking with medicos about your psychological symptoms? Do they make the link between Hashimoto's and the symptoms you report?
I'm an educated professional (well that's what I tell myself . . lol ) who last year was reduced to a brain injured anxiety ridden moronic vegetable after becoming completely exhausted after a one month work block!
This year I returned to P/T work 3 days p/w and was just managing to keep my head above water, but after about 9 weeks, eventually became exhausted again and took two weeks break. Returned to work, after one week and felt completely drained, fatigued, exhausted and struggling to remain focused, and find the energy to get up in the morning and get through the day. Good heavens, do you think that maybe reducing daily Thyroxine dose by half might have something to do with this? Well it seems that I face a 'trade-off' as we like to say in economic circles. Either I can feel relatively well on 100mcg Thyroxine with the added burden of MONSTER ANXIETY quietened by strong drugs, or . . instead consume only 50mcg Thyroxine and only experience intollerable ANXIETY + exhaustion + hashi symptoms. Hmmmmm . . . . . . . decisions, decisions, decisions?
Well, it seems that the medicos need to be reassured about their 'clinical' decisions, so GP (bless him, he's really lovely) ordered yet another blood work to confirm what I jolly well could have told him myself - i.e 50mcg Thyroxine is too low. (Blood results are not yet back from lab, so I hope I won't be too red faced over this one -time will tell)
Please keep posting and tell me all your Hashimoto news. There is an organisation called Thyroid Australia - I've joined, but I do not know why I did this because they seem to focus on hypothyroidism - it's all still a bit confusing. have to get back to it later on.
Ohh, and I have a daughter named Rach too. Lovely name.
sounds like you've got yourself a pretty good doc there, in the fact that hes prepared to try to medication. My last one (who is now sacked) only prescribed T4 and was just happy if the numbers were 'in range'... didnt give a rats *** if they didnt correspond with each other! Oh well... onwards and upwards
My anxiety was NEVER attributed to my thyroid. When I was first diagnosed as having a goiter, in the UK, I was asked "do you want to sort out your anxiety with your GP before we look at removing your thyroid?"... ummm no, I think removing it would be fine. I wont be touching ANY anti Ds or anti anxiety meds thank you very much. Then... when I was due to have my thyroid removed (at this point my labs were 'normal' and I was never tested for Hashi) my Endo changed his mind on the day of surgery and sent me off to my new life in Australia... after living in Australia for 6 months my goiter grew 6cms and I decided I wanted the sucker out! So... it ended up costing me around $6k... thanks very much UK Endo! After the Op I read the histology report which showed 'lypmhocytic thyroiditis'. I asked my Endo to confirm this (neither him or my surgeon volunteered the information) and he said "yes thats Hashi, but it doesnt matter now anyway because the antibodies have no work to do, as you have no thyroid!"... great bedside manner this old doc of mine!! lol
Prior to the Op my TSH was always supressed but neither my UK Endo or Aussie Endo was concerned by this. After the Op my TSH started to rise and my Endo said "oh, there must have been something up with your thyroid after all!!" .... YOU THINK???!!! I had a HUGE retrosternal multi nodular goiter and Hashimotos you idiot!
Long story short, my Endo didnt listen to symptoms and just relied solely on labs. I got copies of my last 12 months labs (been tested quite a lot since op) and it very clearly shows my TSH and FT3 dropping with my FT4 rising... bloody idiot didnt even pick up on this. Last time I saw him I told him I'd been feeling hyper over the last couple of months and his reply was "Oh well your bloods are perfect, almost identical to pre op, so it cant be that!!" haha... too funny really.
So... his pay packet will be a bit smaller this year as he wont be seeing me again!
I've now moved onto a new Endo in Penrith - Dr Coles... and he seems really nice. As soon as I walked in, sat down, told him how I was feeling he said "well the first thing I'm going to do is reduce your dosage"... good man!
He also changed my medication for my low calcium (which I've had a problem with since my TT) and believes me to be mildly hypocalcemic. Good man again!
My first week after reducing my dosage was pretty bad, which for some reason it always is after a dosage change, but this week has been better. I go back to see him the end of the this month and see how things are going.
I made an appt with Dr Ludka Berkowski prior to making the appt with Dr Coles, but there was an almost 3 month waiting list. I'll go and see her anyway and see what she comes back with because I really want my adrenals etc tested too. After years of being untreated for my goiter and hashimotos I think a few things may have taken a bit of a hit - so I'd like them checked out and fixed!
Sounds like 75mcg would be a good place for you doesnt it? 50mcg is a big jump. My last Endo tried to get me to change by that amount too. I was hypo on 100mcg so he said I should increase to 150mcg - I said I'd prefer to change to 125mcg initially and his reply was "but they only do 100mcg and 50mcg!!" too funny again! So I told him I could maybe cut it or take it on alternative days... its seems this idea had never occurred to him!
God I'm babbling on here .... sorry!
Upshot is... UK and Aussie endo didnt attribute my anxiety to thyroid... but it seems my new Endo does
Total Thyroidectomy Oct 06 due to Massive Multi Nodular Goiter and Hashi
2 x Caltrate