About 20-years ago my wife's goiter was becoming large and impinging on her wind pipe. So, in our blissful ignorance and infinite wisdom at the time, we thought nothing of it and thought surgical downsizing of the gland would do the trick. I can't remember the ins and outs of the situation at the time, but the surgeon for some reason removed the complete thyroid gland and inadvertently also removed the parathyroid glands (calcium regulating glands).
My wife has since been on Levothyroxine (currently taking 125 micro g's).
Her health has gradually been deteriorating i.e. brittle nails, brittle hair, hair falling out, fatigue, joint pains, lethargy, thinning of the eyebrows, sleepy all the time, etc.
So, we decided, this time to get her referred to a specialist with a view to understand why her medication was not being very effective. To this end my wife made an appointment with a GP in her surgery and presented her complaint in a letter formulated by myself. The extract of the letter is given below. The GP concerned read the letter and dismissed it saying she was:
'barking up the wrong tree'
'was she happy with her life'
'the symptoms were likely to have been brought on by her depression'
Well wouldn't anyone become depressed after 20-years of suffering with no end in sight?
The GP came across as very arrogant and dismissive, although at the end of the session he reluctantly agreed to refer her to an endocrinologist. This left a very a bad taste and respect for some doctors in the NHS.
We are now planning to undertake to the full Thyroid tests from Blue Horizon (bluehorizonmedicals.co.uk) and hopefully take the results from those with us when we eventually get an appointment to see the endocrinologist.
I personally have very little respect for the medical establishment and pharmaceutical industry, in general. It merely seeks to treat the apparent symptoms, one at a time, rather than take a step back and take a holistic view of the problem.
Extract of letter I wrote for my wife to take to her GP:
Dear Doctor,
XXXXXXX has had her thyroid totally removed (for reasons yet unknown) and her calcium glands were inadvertently removed (for reasons again yet unknown) by her consultant surgeon, AAAAAAA in Nov 1996 (about 20-years ago).
Her health has been gradually going downhill since, to the point that her joints now ache. She finds the simplest of household chores now difficult to accomplish without an extra pair of hands i.e. turning the lid of a jam jar is a painful experience for her and she requires someone to help her, for what would be considered a very simple task to most of us. There are numerous household chores that she now finds difficult to do.
Life for her is becoming depressing and de-spiriting and her self-esteem is at an all-time low.
Her metabolism is below par. She’s managed to control it to some degree by going to the Gym for the past 2.5+ years (since March 2014). This has had some positive impact but not as much of an impact as other lady’s undertaking similar activities.
She has also started taking probiotics and enzyme capsules. These have helped to a degree.
But despite all these efforts, her weight loss effort and waist girth size immediately resort to their original dimensions, making all the effort put in a total waste of time. Life is becoming grinding and weighing XXXXXXX down.
Despite blood tests over the years, stating blood tests are normal, well things are not normal, as shown by the numerous symptoms listed in Attachment A.
Her temperature is all over the shop. One minute she’s feeling cold and the next minute she’s feeling hot. And there is a conflict in the household, because she is out of kilter with respect to everyone else in the household.
XXXXXXX is in a constantly depressive frame of mind and her morale is at an all-time low.
Just because blood tests indicate that things are normal, doesn’t mean to say that they are normal for XXXXXXX .
To that end XXXXXXX would like to see a Thyroid specialist/consultant with a view to see what other alternatives she could try out i.e. T3 on top T4 intake, a different version/brand of thyroxin, dietary control, Hormone Replacement Therapy (HRT), etc.
Regards
YYYYYYY
(Husband of XXXXXXX )
Attachment A - Thyroid symptoms Experienced by XXXXXXX
================================================
Fatigue
Joint pain
Muscle pain in legs
Locked shoulders
Tingly feelings in fingers
Pain in heels and ankles
Confusion
Lethargy
Hair loss
Thinning of eyebrows
Extreme sensitivity to hot and cold
Cramps
Brittle nails
Weight gain (after 2 years gym and personal trainer for 3 months)
Sleepy all the time
Mood swings
Anger
Depression
Facial hair
Sensitivity to certain foods i.e. Milk, Fizzy Drinks, Wheat
Written by
mmamuk
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If all 4 parathyroids were removed she will have hypoparathyroidism, this can be difficult to control so could be part of her problem, tingling hands is a classic symptom of low calcium, I assume she is prescribed both calcium and vitd ?
I suspect all 4 have been removed. I and my wife will try to verify this from the notes she's got, and if unable to, then we'll attempt to enquire from one of her GP's from her surgery.
Yes, in addition to Levothyroxine, she is also being prescribed both calcium (1500 mg of calcium carbonate) and vitamin D3 (10 micro-g's).
Classic hypothyroid symptoms and, unfortunately a classic doctor response.
First thing you need to do us get a copy of her test results for the past say, 5 years and post them on here.... Lets have a look at what the doc has been measuring and lets see how he is "managing'' your wifes hypothyroidism. You are legally entitled to results, though there may be a small charge for printing. Write to docs enclosing a sae and request allblood test results .... Under the 1998 data protection act you are allowed to see any info which is held about you on computer.
You wife has to convert the t4 she is taking into t3 which is active. About 15% of people cannot do this, the number is admitted by the hormone manufacturers but denied by most of the medics... Including the 'experts'.
Things which help are, taking meds on an empty stomach, far away from calcium. Keeping selenium, b12, iron and ferritin levels good. Not just in range, but top end of ranges.
Taking t3,( liothyronine) in addition to t4. ( levothyroxine) .
One part of the equation which is being missed, is that a normal thyroid gland produces calcitonin.... This stops calcium from being leeched out of bones and into the blood stream. ( prevents oteoporosis and heart problems). Only NDT ( dessicated thyroid... From pigs) supplies calcitonin. Trying to get t3 or ndt from a doctor or an expert is almost impossible. Most of us just buy our own....
I found that my temp was low even when i felt hot.... The feeling hot for me, was linked to high blood sugar. By using a meter and testing 2 hours after eating, i found that my oroblem was in digesting starchy carbohyrates..... Bread, rice, pasta, pastry.... I fixed this by avoiding them and taking a course of pro biotics. I used vsl 3 sachets. vsl3.co.uk/all_about_vsl3.php It took me years to figure this out.... The dics immeditely say you are overmedicated with thyroid, if you mention feeling hot.
Your suspicions that her meds are inefficient are probably correct..... You can sort it out.... Keep reading.... Have uou seen the website which runs alongside this forum? thyroiduk.org.uk
Thanks for your informative reply. We will now arrange to obtain the results of my wife's blood tests for the past 5-years and will then hopefully post these onto here.
"You wife has to convert the t4 she is taking into t3 which is active. About 15% of people cannot do this"
15% of the general population? Wow. That's mind blowing. Just imagine the pain and heartache, as well as the cost to the NHS of treating all sorts of conditions if only they'd admit this and give people who need it some T3 or NDT. It's criminal.
So population of uk is 65,000,000. And 2% of these judged hypothyroid. That is 1,300,000.
Of these 15% can't do the conversion of t4 to t3.
So that means about 200,000 people actually need t3, Its a minority, but quite a significant one....
You can see why the drug companies are not interested in applying for licences and drug trials of t3, 200,000 people are not enough to make a huge profit.
Compared against some other medications, you might be right.
But imagine a company that current sells their T3 product at £2 for 28 tablets. So they supply the UK adding in £10 per pack of 28. So we see 200,000 people, taking one tablet a day, 12 months a year, comes out at £24,000,000 (on top of the £4,800,000 it actually could be sold at with a slim profit). Not a bad extra profit for not that much more than the effort of applying for a UK licence.
And still a tiny fraction of the MercuryPharma price - but around what used to be charged in the days when it was called Tertroxin.
I'm so sorry to hear about your experience. I don't really have much advice to add at this point - getting private labs and making sure they test FT4, FT3, serum iron, Vit D, B12, etc, will all be helpful. Is she getting calcium measured regularly as well?
What I *would* like to recommend for others in a similar situation - do not ever mention "depression" to your doctors as a symptoms, because they latch onto that like it's their diagnostic holy grail, and it overshadows everything. I've made the same mistake over and over many times. Now I try to stick to physical symptoms and brain issues that should be unrelated to depression and mood issues, e.g. fatigue, temperature, memory loss, joint pain, etc. Not that they take these symptoms more seriously either (especially fatigue!) but at least the depression story doesn't distract them (I would also avoid discussing emotions - they just blame that on us being women!!).
I assume by Serum iron you mean "Ferritin"? These will all hopefully be covered by the tests that Blue Horizon undertake (bluehorizonmedicals.co.uk/e....
Calcium measurement: this and all the other blood tests that the surgery does, as part of hypoparathyroidism, are only done once a year.
Thanks for the suggestion about not mentioning "depression" and "emotions" to GPs / Doctors. We will take that on board in all of our future dealings with GPs / Doctors.
Serum iron measures the iron your body is currently using. Ferritin is a measure of the body's iron stores. As iron is needed it is taken out of the iron stores and then put back in when not needed.
In a healthy body the amount of iron lost per day is really tiny. The body hangs onto what it can very tightly because it is so important.
But in sick people things can go very badly wrong with iron, and low iron and ferritin are very common.
yes exactly. Sometimes ferritin can be fine but iron low (e.g. when there's inflammation). So it's important to measure both. It's also good to test % saturation. stopthethyroidmadness.com/f...
I'm afraid this is the usual treatment we hypos get! Nothing unusual at all. Doctors do not believe our suffering and are unwilling to do anything about it. Same old story! I don't have time to go into details now, but I'm sure others will be along to fill you in.
As to the removal of her thyroid. I'm afraid you can't just 'down-size' it. It's all or nothing. So, that wasn't malpractice on the surgeons part. The parathyroids are another matter, though. But, without know all the details, it's difficult to comment. What you have to do now is concentrate on getting her treatment optimised. And I'm sure a lot of people will be along to help you with that.
Err GG you can "down-size" it by having a partial removal, had it done myself. The parathyroids are a difficult problem for surgeons as they are so tiny, smaller than a grain of rice and they may not be in the usual position and can sometimes even be attached to the thyroid so surgery is a risk to parathyroids. I had parathyroid surgery 2 years ago, my surgeon was one of the best in endocrine surgery and after my op even he couldn't be sure if any other glands had been removed or damaged, neck surgery is difficult.
Granted. But, I don't think we're talking about the same thing. Removing one lobe of the thyroid is not really down-sizing it, it's removing one lobe. If the gland is swollen, and the whole thing is pressing on the windpipe, removing one half isn't going to help. You can cut it in half longitudionally, it you see what I mean, or just cut a slice off the whole gland. But, of course, we don't really have enough information to know if that was the case, or what the case actually was. But, that's what I meant.
Several of the symptoms above (at least the first six) are directly due to the loss of parathyroid glands. If you go to Google and type in "loss of parathyroids" the first item that comes up on the web page will give you quite a bit of information on symptoms and what to do in treatment. This of course is in addition to thyroid therapy itself which has to be analysed separately.
hi i have just joined this forum looking for information myself and stumbled across your post, your wifes symptoms are virtually identical to what my partner went through, though my partner never had an operation to remove his enlarged goiter his general health declined over a period of 2 and 1/2 years, he was required to take levothyroxide 50mcg for 1 week then 100 mcg there after , he followed the doctors instructions and after a few weeks started to feel really sick a blood test was done around 6 weeks time where we received a phone call from the doctor stating to increase the dose to 125 mcg a day , this gave my partner symptoms similar to hyperthyroidism so we went back to the doctors who basically would not listen at this stage he was continuously being sick , bright red in the face , constipation then diarrhea, he also developed atrial fibrillation which we discovered a few months after by sheer accident when my partner was scheduled for biopsies due to previous head and neck cancer, it was the radiation from this treatment that destroyed part of his thyroid gland, these biopsies was postponed due to this AF , we spent hours in resuscitation unit due to his raised heart beat he was then prescribed verapamil 40mg 3x per day, this tablet of course showed no benefit for my partner he ended up right back into resuscitation, within the month i had tried to point out to the consultant that his symptoms began since this levothyroxide was prescribed and i was basically told the tablet dont cause any such problems and i was laughed at, they increased the verapamil again from 40mgs x3 times per day to 80mgs 3x per day and it never worked , he was still in AF , after around 1 months time he got to see an cardiologist who decided to admit him that day due to being in AF whilst in hospital he was prescribed an addition 2 medications digoxin 125mcg and rivaroxaban 20mg , an echo was performed on his heart which show his heart thankfully being healthy , after he got discharged he told me which he had done on other occasions that he felt like the tablets was poisoning him as he had a horrible like metallic taste in his mouth especially when ever he took the levothyroxide , one day he woke up being violently sick again and he decided he would not take any medication that day as he could not hold anything down luckily he was peg fed which enabled me to keep up his hydration levels but i did find his weight was much harder to control as his weight had dipped from 74kgs to 58kgs within the year, the nutrition was going through but with sickness as part the problem and just general difficulty in obtaining weight this was a struggle , countless times i approached the doctor seeking help , and not only the doctor i also approached pharmacies both in the hospital and outside the hospital , i approached consultants , nurses etc but i was made to believe it was basically not true it was me imaging it was the tablet not my partners health being the true problem , what? my partner was treated for head and neck cancer in which it was cured he got better started going out and enjoying life again until this tablet was dropped on him now his in and out of hospital developed other health problems on top of this , never goes out , peg fed , and is bed bound loosing hair by the hand full and continuously being sick , anyway he never took any of his tablets for 5 days and i was surprised that he picked up greatly , no sickness , was getting out of bed again , seemed to be gaining weight ; the cardiologist appointment was on the 5th day an heart scan was done and it was normal , heart rate was normal , 02 was normal , we told the consultant how he had stopped his medication and felt much better for doing so , rather then the consultant being pleased he took out each tablet i had with me for the appointment and said whilst holding the box in front of my partners face saying " if you dont take this tablet within 2 weeks you will be unable to get out of bed and could end up in a coma " if you dont take this tablet your heart problem will get much much worse and you could end up back in hospital with much worse prognoses , he went through every tablet one by one telling my partner how ill he would be without the medication , well that did it the consultant frightened my partner into taking these tablets religiously everyday , then the breathing difficulty started , still the medication was not the problem , in may 2016 he ended up in critical care unit , i was told he had only 20% of his heart working as he had a probable silent heart attack at some point , his lungs was scarred from previous treatment for cancer , he had ischemic heart disease on top of that , i have never heard of heart disease beginning and ending within 2 weeks everything surrounding his death is suspicious , and im still looking for answers as to why he died , im not saying what happened to my partner will happen to your wife but might be worth you keeping an eye on , my partner lost his life at the age of 55 which could have been prevented if they had listened to us, i made a complaint and got the report back last month stating his death was not suspicious and he died from natural causes , though they also mentioned the digoxin as a contributing agent but not the cause , im still fighting my partners case whilst also dealing with his death , my advice to you would be question everything , look for alternative treatments a one size fits all for treatment options is not good enough doctors and the pharmaceutical company's are not in health care today for the good of the patient , more for the profits in pushing un necessary medication and vaccinations seeking vulnerability in society to push them on ,good luck and i hope everything works out for both you and your wife x
My not so positive worldview of the Medical Establishment and the Pharmaceutical Industry stems from personal experiences as well as the way my Mum's lung cancer was misdiagnosed by her GP:
(i) initially as a heart condition,
(ii) and then when heart tests were negative, her GP said her pain around her right shoulder blade was a figment of her imagination.
By the time it was formally diagnosed as Lung Cancer it was at Stage 4 and she lasted 14-months from formal diagnosis to breathing her last in Nov. 2015.
same here my partner went to the doctors for a whole year complaining of loosing weight , continuous cough , then voice loss he was told to eat more fish and yogurt this was in 2010 in 2011 after a whole year of complaining i think they must have looked at him and knew some thing was horribly wrong and he was admitted into hospital after an appointment with the ENT specialist, he had an large tumor on his right vocal cord which took most of his airway the consultant said if he had not attended for that appointment he would have been dead within a month, makes you think alot when you are spending a lot of time in and out of hospitals and doctors surgery s, i looked after my partner for 5 ½ years but we was together for 20 years he said to me after going through the treatment for cancer the worse experience he had was with the thyroid and that medication that the doctors put him on for it, i really hope you get the answers your looking for its very moving to see your post , im sorry about your mum and can totally feel what you went through at the time, keep researching and reading the comments people on this forum has made there is some interesting answers on some i would def follow up on , all the best x
First of all, let me compliment you on an extremely well-written and interesting post!
Secondly, I have never understood why patients who have had their whole thyroid gland removed are supposed do well on one thyroid hormone only (T4), when a healthy thyroid gland actually produces several hormones.
As there seems to be general consensus that T3 is the most important hormone of all, I'd say your wife needs T3 supplementation. That either means NDT (natural desiccated thyroid, porcine or bovine in origin), or synthetic T3 added to her T4 meds. Some take T3 only with good results, although a healthy thyroid gland produces T4 as well. Most seem to agree T4 is only meant to be converted to T3, but some health care professionals who believe that T4 has a role to play in itself, apart from being a storage hormone, that is...I guess everyone will have to find out for themselves what works and does not work.
But from what you say, it seems pretty obvious to me that your wife does not do well on T4 replacement therapy alone.
Also, since she most likely has been in a hypothyroid state for the past 20 or so years, I'd recommend she had her adrenal function tested as well. If she is suffering from adrenal fatigue, her body could end up having a hard time dealing with the direct T3 in NDT or synthetic T3 medication. Some more knowledgeable doctors even prefer to treat the adrenal first before putting the patient on meds containing T3.
I really hope you find a health care provider able to help you, as I think you and especially your wife have suffered enough.
I and my wife appreciate your advice. We'll also look into the adrenal fatigue test you suggest as an additional test to be considered - NHS or otherwise.
In reality, my wife is the one whose had to bear the brunt of it of all, with endless visits to her local surgery and countless blood tests, etc.
Talking and getting responses from the many individuals on this site appears to have shifted my mindset from one of frustration to one of ease. I'm a firm believer in: "...if nature throws a problem at you then there is a solution waiting to be found out."
I am sure you will figure it out in the end. It can feel overwhelming at first, but the knowledge and support you can find here will certainly make things easier for you.
Please don't feel discouraged if doctors seem unsupportive. It seems sometimes that the biggest problem is finding a doctor willing to work with unconventional methods (and that includes synthetic T3 and NDT).
mmamuk I'm glad you have found this place. Stick around and learn as much as possible that way if the medical establishment won't help your wife you can find out how to help her.
Also be aware endos can be as rude as GPs - it doesn't matter if you see them privately or on the NHS.
BTW there is a list of endos which thyroid UK has who are sympathetic you need to email louise.warvill@thyroiduk.org.uk to get that list. Though it is likely because you don't know much about which specialist your needed, your GP sent you to the place with the shortest waiting list and isn't recommended.
I'm glad I've found this site too. And I'm sure I and my wife will learn a lot from people who are at the receiving end of it all. At least they know what they're talking about and consequently have the listening and understanding ear to go with it.
I found your comment about Endos and GPs and private or NHS very interesting.
I've just drafted out an e-mail to forward onto Louise Warvill to get a list of sympathetic specialists.
My wife's Levothyroxine range has varied between 50 mcg to 225 mcg. Since about 2-years ago this has been set at 125 mcg. Her GP stated that if one takes more than ones "needs" then one could get:
(1) palpitations, and
(2) osteoporosis
I'm obviously not qualified to challenge the GPs statements.
Good luck, mmamuk. You're wife is lucky to have you help her fight this battle. Unfortunately, the endo's response is likely to be the same as the GP's, but she and you know best how she feels and how far that is from her normal.
1. "...to never ever take levothyroxine in 24 hours before a test" - that's news to both my wife and myself. In all the blood tests she's done to date, she's never been advised of this. Could you give us a link/pointer where a case is made for this suggestion.
2. "...to always have it fasting and early morning" - She allows a 4-hour gap between Levothyroxine and the other medications i.e. Vitamin D3 and Calcium. She does, however, eat food within that 4-hour gap. Her understanding is that the 4-hour gap is only applicable for between medications.
3. Her instruction sheet that comes with the Levothyroxine medication states:
"If you take more Levothyroxine Tablets than you should":
"Signs that you have taken too many tablets include: palpitations, a rapid heart rate, an irregular heart beat, raised blood pressure, angina (chest pain), tremor, difficulty sleeping and abnormally, high body temperature, sensitivity to heat, sweating, headache, restlessness, confusion, anxiety, weight loss, diarrhoea, vomiting and irregular periods, Fits, coma and deat have occurred. There maybe a delay of several days before these symptoms appear."
I and my wife will obviously read around this site to see what other peoples experience has been.
There are a couple of things to consider when having thyroid functions tests :
TSH : A low TSH will increase the chance that meds will be reduced, or a raise will not be offered when it is necessary. The most important factor in determining TSH is time of day. It has a circadian rhythm described in this paper :
Look at the graphs on page 2. During working hours, the TSH is at its highest early in the morning. So always get tested first thing in the morning. (People rarely have blood tests in the middle of the night!)
Free T4 : This is determined mainly by how recently the last dosage of Levo was taken. If Levo is taken just a few hours before testing it could be very high. This could result in meds being reduced inappropriately. So, as the link you gave explains, you should leave 24 hours between previous Levo dose and getting blood taken.
Free T3 : Doctors rarely test this because they say it fluctuates too much. They do have a point, but this is not sufficient reason to never test it. Low Free T3 is the actual cause of most (all?) hypothyroid symptoms. Suggestions on this forum are that T3 should be stopped for 12 hours before testing. This will often give a low level because T3 doesn't just stay in the blood then get excreted, it goes from the blood stream into the tissues of the body.
I've seen it suggested that the "true" average level of Free T3 should then be calculated by adding 10% to the Free T3 level after a 12 hour gap. It is difficult to say what really constitutes a "true" level of Free T3 since it fluctuates all the time. But if a doctor was to see a Free T3 result taken within 2 - 6 hours of a dose of T3 being taken they would freak out and reduce dose because the blood level will be high. Personally, I'm much happier with the 12 hour gap and adding 10% idea.
I won't add to the excellent advice you have been provided by other HU members. I just want to say I am so sorry you wife has been going through so many years of hypothyroid hell ;( However, I am glad she has a husband who is willing and able to fight her corner!!! I also share you feelings and disappointment regarding the lack of competence among the medical profession. You are on the right track and I wish you both all the best! I'll keep my fingers crossed that you wife will make a full recovery!
Absolutely you need to take things in your own hands. 20 years is a long time to suffer without properly working body. You could ask for DIO2 genotype blood test, this would reveal if she is lacking enzyme converting T4 to T3. About 20 percent of European population have DIO2 TC or CC genotype. You can also find functional doctor who would understand you better. If you dont get description for animal thyroid medicine like Armour or T3 from a doctor, the last resort is to buy it online. Like Natural Source raw thyroid or Tiromel.
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Sometimes ferritin can be fine but iron low (e.g. when there's inflammation). So it's important to measure both. It's also good to test % saturation. 
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