Hi, can anybody help me please. I feel as though i am always asking difficult questions and being a pest but not wanting to be.
I was off my Thyroid meds for 2 months as i was trying to sort things out with Diet, and my Dr was okay with this. I was feeling really good off my meds and following a Keto Diet.
I am Hypothyroid and also suffer with CFS and Fibromyalgia, so was feeling so much better on this diet as my pain almost vanished but realized i was still very tired so thought maybe it was time for another blood test to see how the diet was working in regard to the Thyroid, as thought this might be the Thyroid and not just the CFS. These were the results which my Dr says were normal but when i asked for a copy a month later i discovered they were very abnormal. Can anybody help in regard to what doze i should be back on in order to get it balanced again. I am so fed up with the Medical Profession and am so pleased now that i asked for a Copy as they were anything but normal.
T4 : 9.3 ( 10.0-19.0 )
TSH 14.0 ( 0.50-4.00 )
T3 3.5 ( 3.5-6.5 )
These are Australian standard Ref ranges.
Really concerned about the TSH level and have put myself back on 100mg of NDT, thank goodness i had a script already in the drawer as i was not able to get into my Dr straight away. How could he make such a mistake, its not good as i don't trust him in caring for me now as the result was anything but normal.
Thankyou yet again for your help. x
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recovered7
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It wasn't 'normal' of him to agree to you going off your hormone for two months, either. That was a very reckless thing to do, and look at the results. A diet cannot 'work in regard to the thyroid'. You cannot fix your thyroid with a diet, and your doctor should have known that, and warned you. Why couldn't you have continued taking the NDT whilst doing the diet?
Was it that same doctor that 'diagnosed' you with CFS and fibro? It was probably low thyroid all the time.
The TSH is not the most important number. It's high because your Frees are low. It's T3, the active hormone, that causes symptoms when too high or too low, so the FT3 is the most important number, and that's right at the bottom of the range. I'm not familiar with 100 mg NDT - we usually talk about NDT in grains, and 90 mg is 1.5 grains. So, that might have been rather a high dose to go back onto after two months. Watch out for hyper symptoms, you might need to reduce it a bit.
As for you doctor, he obviously knows very little about thyroid. Can you see another one?
Hi , thankyou for helping me yet again. I was diagnosed with the other problems by a specialist initially as my Thyroid function was at optimal levels and i was still having severe pain and exhaustion to name a few. I'm just upset that he didn't take care of me properly, and yes, i am having hyper symptoms. Initially he wanted me on 150mg, and i refused, because i had been off them for too long to dive straight back onto such a high doze. I am seriously considering finding another Dr but i am in a Country area so its limiting. Thankyou, for answering my question so promptly as i was quite concerned. xx
I have read that 'new' disease i.e Fibro, ME, and CFS were named about ten years after the introuction of levo and blood tests.
Before that we were given NDT contains all of the hormones a healthy gland would do) due to our clinical symptoms ( without blood tests (none available then) and increased slowly until all symptoms resolved.
One of our Advisers stated that T3 helped these conditions rather than T4.
My Endo has intimated I could have ME, CFS and Fibro. I believe there is no specific treatment but this seems an easy way out to blame symptoms on something else and take the focus away from the thyroid. I have a colleague currently with a slightly elevated TSH, had fibro for years and her GP says her thyroid is fine. I have to bite my lip every time she talks about the pain.
I was diagnosed as hypo over 30 years ago, my health had been gradually getting worse and I asked to be tested. However, despite the addition of levo, my health continued to decline and the Fibro/ME/CFS diagnosis was eventually added. No specific remedy for these syndromes! Offers of anti-ds, strong painkillers etc were made Most of those quickly made me feel even more unwell so....no thank you to those!
I continued to be unwell until I could barely function....I was finally offered a talking therapy, which I refused! By now I think doctors had decided that I was neurotic, I even challenged one about what I saw as her obvious but unspoken/non specific conclusion regarding my state of mind. My mind didn't need healing, my body however clearly did yet she failed to see this.
I had repeated for years that I was sure my ill health was connected to my metabolism...that continually was ignored by various doctors, they simply did not connect hypo with metabolism.
I'd had enough so decided to do some research which eventually led me here... to the best advice ever.
I now know that I have a faulty gene which has impaired T4/T3 conversion - I expect, to some degree, for most of my life.
As an aside..though I have no proof, I am fairly sure that I inherited my faulty gene from my maternal grandmother who was said to have Fibrositis (said also to be the old name for Fibromyalgia) and spent her latter years bedridden and in great pain. That was in the 1950s.
My thyroid must have been struggling even before that long ago diagnosis when T4/levo was added but, it must have kept me just "ticking over" for many years, during which, on reflection, I never felt wonderful. I'll health crept up on me very gradually and I just accepted what medics told me - as one was expected to do back then! They were supposed to be the experts!!
I decided to self medicate, obtained T3 from a reliable source, very carefully followed advice given here, read widely and started to understand thyroid function and with increasing confidence added T3 to my T4.
About 4 months later after various dose adjustments I realised progress was minimal. By this time I had been advised that my conversion was poor so I had a thyroid genetic test done which gave me unequivocal proof of poor conversion that, should the need arise, I can present to (probably still doubtful!) medics.
At this point I decided T3-only may be the best way forward and now feel I'm making very slow progress. Along the way I have both over and under medicated (quickly noticeable by basal temp and heart rate changes) but feel I'm now close to the correct dose.
It is vital to recognise that dose adjustments are very low and changes are slow. It takes time for the cell's receptors to "grab" the available T3. In my case I guess many of the receptors had become, and consequently lay dormant, for possibly decades. Activating them again will, I can only surmise, take considerable time. Hopefully they will be happy when a constant supply of sufficient T3 is available to them. Whacky....but I like the idea of happy cells!
I would suggest that there is no quick fix for thyroid malfunction. Recovery is a slow process...it takes time and patience along with the knowledge gained from both here and from extensive reading. I found this to be the way forward.
I now have an otherwise wonderful GP who to her great credit admits her poor knowledge of thyroid conditions. She can no longer test T3 nor can she prescribe it but she understands and supports what I am doing....and I hope learns a little along the way. I give her regular written up-dates detailing what I have been doing because I feel this should be in my records should I for some reason be rushed off to a hospital.
Now an aged Granny myself I hope my grandchildren have happier memories of me that I have of my own poor, suffering, bedridden and understandably intolerant Grandmother.
For that....thank you to the people here who have enabled me to follow a different route which has passed through a tunnel with light at the end of it.
The moral of this rant.......if you suspect someone has a thyroid problem speak up, it may save them a lifetime of declining health!
I so appreciate you sharing your story with me. Unfortunately so much of it is a horror story of neglect and there are so many more that have been shared similarly here on this forum. It does make me grateful that I have been on the roller coaster just under two years.
I have developed an almost evangelical zeal for spreading the fibro etc/ thyroid connection!
The appalling lack of knowledge about thyroid function amongst badly trained medics is a scandal of monumental proportions. TUK and others are working to change this but if the words continue to fall on deaf ears hope of change anytime soon is scant.
I often think that if we had some self-inflicted condition all stops would be pulled out to help us....yet, through no fault of our own we are unwell and left to search for a cure.
TUK offers a safety net but my heart goes out to all those who fall through it...and there must be many!
Hopefully, your journey to reach the light at the end of the tunnel will be brief!
I think people I meet - even if strangers - and they say they've not been very well I urge them to get a Full Blood Test for thyroid hormones and they probably think I am a bit weird (probably am).
This is only because despite me complaining and complaining - even having an op on my throat - not one medical person ever took a blood test for thyroid hormones and by the time I did this myself - one day after an overnight stay in the A& and discharged as 'probably viral with a high cholesterol level - my TSH was 100, despite being told many times my tests were great - the only problem was they were never for thyroid hormones.The GP who phoned me about 2 hours after my 8 a.m. blood test - first asked who gave you a form for a blood test and I said 'I did'. She said you have hypothyroidism come and get a prescription.
That's a really interesting take on the Thyroid Function. I used to work in Pathology and also as a Nurse up until i became too sick to work several years ago, and i would have to say that i had never come across anybody that was suffering from Fibromyalgia ? but had heard of the CF syndrome which is now reaching great heights in the Community around us, but. is it really a Chronic Fatigue Syndrome or a symptom of something else, as it is also now being called Adrenaline Exhaustion. I am so confused about what is actually going on in my world health wise.
We used to be diagnosed upon symptoms only - there were no blood tests and doctors' had the skills to do so and also there was only NDT (natural dessicated thyroid hormones) and we were given trials and if we improved we stayed on them. There was no stopping because we went beyond a 'range. We continued till symptoms were relieved. If they didn't relieve then they looked elsewhere.
One of our doctors - a Virologist - who was being sent patients with 'mysterious diseases' found they were suffering with a dysfunction gland due to signs/symptoms and treated them with thyroid hormone replacements. Some who couldn't get well on levo were prescribed NDT. For so doing he was pursued by the authorities and appeared before the GMC more than once. Each time he was discharged as doing nothing wrong but do we know of any doctor who appeared before the GMC who received 10,000 testimonials that this doctor 'saved their lives'. He was found to be doing nothing wrong but the strain must have been immense. He stated a number of times that people were put in a parlous situation due to being undiagnosed/undertreated. Unfortunately Dr Skinner died and his patients and family and staff were bereft.
Baobabs
First the NHS withdrew NDT and put patients into a panic, now they have withdrawn T3 - caused another panic. The price rise by the pharmaceutical companies was a brilliant excuse to withdraw T3. So we are now left with levothyroxine alone which doesn't suit every single person and I am one of them.
Doctors have followed the guidelines in that the TSH has to reac 10 (in UK) before being diagnosed and people can be quite unwell if it goes above 5 (top of range) they can also be symptomatic with a lower TSH but they don't take account of symptoms. They will diagnose us with 'some other condtion and prescribe' when we need thyroid hormones.
Also the British Thyroid Association has made False Statements about NDT and despite a three yearly reminder that they were untruthful they never did respond before Dr Lowe died.
Shaws thank you for all this info that I shall read and digest. My Endo in Spain will not accept that there are many patients suffering from Hashi's who do not respond to Levothyroxine. He seems to think just a very small percentage of patients do not convert from T4 to T3. Restricted treatment options is a serious problem. The pharmacy I obtain my T3 meds from has restricted supplies and I can't seem to find out why. I would like to know what is happening to all those patients who don't respond to Levo for whatever reason. Do they return again and again to their doctors? Do doctors just decide they are hypercondriacs? I had to actually say to my GP after a year on Levo that I actually hated returning, suffering symptoms and hospital was the last place i wanted to be spending time! Surely the failure figures must be reaching epidemic proportions. Has no one in the medical profession noticed the trend? As a teacher, if I was in the same boat heads would most certainly roll!
Big Pharma has brain-washed all of the endocrinology I believe (was it due to monetary incentives in some places?)
The majority of people who suffer from issues with their Thyroid Gland are women plus all of the other things, i.e. pregnancy, menstrual etc etc. We're always complaining are we not? Many of the opposite sex believe we do.
The majority of Endos and doctors are male and until one has a dysfunctional thyroid gland and incapable of thinking and doing their jobs we are stuck.
We have many good doctors who have been forced (in UK) to stop prescribing T3 and NDT or lose their livelihoods. So they have too.
Big Pharma always look for avenues to increase the revenues and dysfunctions of the thyroid gland seems to be the main one. As some of us don't recover on T4 and are still very symptomatic we are then given 'extra' prescriptions for the symptom(s) i.e. more profits. They have to pay out to their investers of course.
According to one doctor we develop other more serious illnesses - so, again, more money for big pharma (I am I a cynic or what?). One of or doctors, Dr Skinner (RIP) fought the good fight for us in the UK but that still didn't help. and he died.
Doctors' hearts fall when they see these poor souls come through the door once again and the NHS would save lots of £££s if we were optimally treated, i.e. we wouldn't be in the doctors often, we wouldn't need separate symptoms to have separate prescriptions. They have no clue about metabolism which cannot function without sufficient T3 in all of our T3 receptor cells.
I'd like a survey done which asks what additional medications are prescribed for 'symptoms' of people who are hypothyroid. What conditions do they develop a while after being on levothyroxine if they don't feel well on it? Do they get heart or other serious problems.
We are living longer due to big advances in medication for various illnesses but thyroid has become the cinderalla because we can recover if given the proper hormones which suit our bodies and many do fine on levo, but it is the others who don't and the insistence that TSH and levo is the only way to diagnose/prescribe while ignoring symptoms because TSH hasn't reached 10 yet is irresponsible.
One of our esteemed doctors in the USA said that it was due to corruption and incentives by Big Pharma that Levo is the No.1 worldwide. I'd like a survey done to know what hypo people eventually die of. I do know of two who've committed suicide and I know others have had those thoughts because they are so unwell and told that only levo will be prescribed. A distaster.
Ignorance is not bliss if they are supposed to be the the endocriner specialists but seem to know little about the endocrine system at all. It is like us reading a recipe and even if we've followed it correctly cake doesn't rise and we wonder why. We will try to figure this out and next time be very careful to make sure it does and if it doesn't we look elsewhere for the solution..
But isn't this supposed to be the professional, systematic thing to do? why should the medical profession be exempt? It is shocking. just how many folk are being kept sick? I have a colleague I am helping at the moment whose TSH, FT4 & 3 are all wrong and her Endo just tells her levels are in range. She feels ghastly. She has just started T3 treatment a few weeks ago as I pushed her to have more regular testing and the Endo is more concerned about her now diagnosis of osteopenia. I just wonder how the many years of under treatment has contributed to the onset of this disease? And who cares who should care?
Thank you for the references. I have my 2 monthly battle with the Endo on Saturday. I have two Endos in different countries and never, never do they ask how am I feeling !!!!!!!
They only refer to the TSH, it seems to me - never to clinical symptoms or how well/unwell we feel. Their aim is to relieve all symptoms and make us feel very well.
This is all so sadly true. As a Nurse, and also a Medical Rec/Nurse i came across just so much off this money passed under the table so that Drs would prescribe their Pharmaceutical drugs, and they were even offered special Holiday treats as an incentive also. Unfortunately, the Pharmaceutical companies are corrupt in as much as it is all about money ?? Before i met my husband 15 years ago i was dating a Pharmacist and what i learned was disgusting. Its all about money. So terribly sad isn't it. My Dr refused to prescribe NDT for the very same reason, so i went elsewhere as i just could not tolerate this drug. I understand where Baobabs is coming from i really do.
We can 'do it ourselves' step by step with help from members who've already 'been there and done that'. It's not a quick fix but slow and steady is best.
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