chronic fatigue syndrome”, “fibromyalgia”, "depression", "anxiety disorder", "PMDD", etc.

[shaws]

Have you been given a diagnosis of non-specific labels like “chronic fatigue syndrome”, “fibromyalgia”, "depression", "anxiety disorder", "PMDD", etc. the following is from Dr Lindner:

"Most persons with inadequate hormone levels go undiagnosed and untreated. They are instead given non-specific labels like “chronic fatigue syndrome”, “fibromyalgia”, "depression", "anxiety disorder", "PMDD", etc. These diagnoses are merely descriptions of symptoms. They are not diseases. They have no known genetic/biochemical cause. They are the end result of a large number of biochemical, vitanutrient, or hormonal disorders. Dr. Lindner finds that such persons usually have inadequate levels of several hormones. These deficiencies produce different symptoms in persons depending on their genetics and physiology. Since doctors don't look for the cause, these symptoms provide pharmaceutical corporations with a tremendous opportunity for diagnose-and-drug schemes employing anti-depressants, anti-psychotics, muscle-relaxants, stimulants, anti-epileptics, pain relievers and other products.

These drugs do not correct the problem. They interfere with normal brain function producing alterations in feelings, thought and mood that may be viewed as an improvement by the patient, parent, or authorities. On the contrary, medical ethics require doctors to seek the cause and correct the underlying physiological deficit or imbalance whenever possible!

hormonerestoration.com/Fati...

Does the above need to be distributed to the appropriate Authorities. I defnitel think so. Most of us have 'been there' 'done that' diagosed with ..........."

[Flecmac]

THIS IS ME!!!!! What can I do to get this acrosss???!!!! The medical professionals have written me off as a depressive hypochondriac!!!

[shaws in reply to Flecmac]

Circulate a copy to all as they ALL need to have a Course - not a refresher course but actual, truthful, information - they have been uneducated for so long and Big Pharma has made sure that doctors rely upon TSH results alone whereas we used to be diagnosed upon symptoms alone and given a trial of NDT. Big pharma relies on profits, we the patients rely upon getting health restored where possible and it is possible if our thyroid gland wont produce the necessary hormones that restore our health. T3 being the KING which is also within NDT but through misinformationhas been withdrawn by the NHS and recently T3 removed due to cost. NDT used to be prescribed if person wasn't recovering on levothyroxine. Most countries diagnose when TSH is 3+ but in the UK it has to reach 10.

thyroidscience.com/Criticis...

[Flecmac in reply to shaws]

I have so far been unsuccessful when offering medical professionals ANY information. I know they don’t have time to read all at the appointment, but it would be nice if they took it to read later. I am seeing another Endo on nhs on Tuesday and will try again, but so far no luck and same answers re- thyroid issues. I have increased to 50 mcg myself and asked for bloods to be done before appointment to save having to go back for results. I think that’s also a big saving for the NHS!!! Why don’t they think of this???!!!!!!

[shaws in reply to Flecmac]

They shouldn't put the cart before the horse as happens at present.

They should inform GP of all the tests which should be done prior to the patient having a consultation otherwise everything is prolonged and costing the NHS unnecessary monies due to the lack of foresight. i.e. tests plus ranges to be taken or emailed by GP to specialist plus appointments cost. Also a list of clinical symptoms should also be sent.

If we're on a sufficient/optimum dose we should have no symptoms at all . They should also learn ALL clinical symptoms as they know none, neither are they aware the purpose is a TSH of 1 or lower, not higher with the FT4 and FT3 in the upper part of the ranges. Plus all vits/minerals to be optimal. How easy is that?

[Flecmac in reply to shaws]

Thanks. Problem is the labs here will not do T3, only way I can get that is from an Endo appointment with them requesting it. GP also reluctant to keep referring me as I am under a few departments now. Neither want to use thier own budget which causes so much grief and there’s no one who wants to see me any more, they must think I’m a liability!!! No one has ever taken any notice of my symptoms matching thyroid issues.

[sheenah]

Thank You for That.

[cazzaleo]

Interesting, thank thanks shaws!

I’ve been given a diagnosis of CFS/ME but I’m currently trying to get a private endo to give me a decent dose of T3 - my thyroid results aren’t typical hypo but I have consistent low FT3. He’s started me on T3 but a lose dose that he doesn’t seem keen to increase (I’m seeing him next on Saturday!🤞) so I’m considering self medicating to see if I can get to a level where my symptoms reduce, or even better - disappear!!

[shaws in reply to cazzaleo]

The problem is that (if in UK) the cost of T3 has risen astronomically to about £600 for one pack, so I believe. Symptoms can disappear with the right meds/dose.

[cazzaleo in reply to shaws]

Ridiculous isn’t it?!!

[shaws]

If you are in the UK, the cost of T3 has risen astronomically that it has been withdrawn altogether - without notice to many who recovered on it. Why T3 is now around £600 or more per pack I do not understand and The Lords are investigating this at present.

thyroiduk.org.uk/index.html

[Tryingherhardest]

Hello again ,

I can go on sometimes so let me no if I am / have 😃

Now reading this makes me look bad so please don’t judge as I worked full time from being 18 with afew blips xx

I’ve been on and off medication ( antidepressants and antipsychotics) for years .

I was also told years ago I had under active thyroid that wasn’t treated they gave me antipsychotic meds I even self medicated with cocaine which might shock people but it made me feel normal and on my sick lines wrote phycotic episode , anxiety etc

I was in sales so was like my job up and down and in some sales environments cocaine is also a lifestyle choice .

After having my 6 year old they put everything down to stress and no tests just diazepam as I refused the other meds as they seriously effected my head and I was never me when taking them if you get me and was always myself that stopped taking them, was even hospitalised for afew days to correct medication .

When I had my youngest it was by emergency section and I felt terrible they put me straight back onto antipsychotic Aripiprazole along with diazepam got cpn involved who lucky for me has Hashimoto because I told her after taking tablets for afew months everything all my symptoms and I wasn’t taking the drug Aripiprazole anymore because I felt my body needed to detox after couldn’t get out my bed to take daughter to school she demanded thyroid check and that’s how my journey has begun Xx

I still take diazepam as I get carried away like I did other day when joined the group but they just calm my brain and stop the over thinking to a point xx

[shaws in reply to Tryingherhardest]

I don't know what happened but my respoonse to you appeared in FancyPants54: This is it:

How many people go to hell and back! and we do rely upon our doctors to know what to do if we present with symptoms. The pity is that in your situation as in mine no-one did a blood test or, if they did, they would do nothing until the TSH reached 10, whereas in the past it was all about clinical symptoms that doctors were trained in and we got prescribed Natural Dessicated Thyroid Hormones on a trial.

It is very brave of you to tell us your awful story and I do hope that members will be able to help/advise in some way so that you can get an optimum dose of thyroid hormones that will permit your body to react as it should do, if we had no illness and getting the right hormones.

I am sorry for many who are given phsychotic medications for what is, after all, a hormone deficiency but we relied upon doctors diagnosing what was the cause and did not realise they seemed to be untrained, so we go along, initially with what doctors suggest - after all they have been 'trained'.

Once a 'diagnosis' is put onto our medical records all doctors will refer to it and not try to resolve the symptoms first. We probably cannot get diagnosis reversed when finally diagnosed with hypothyroidism.

No wonder you were desperate but we are not on this forum to judge, but to help where possible, but the medical profession didn't come to your aid, provided antiphyschotic and anything else. We have had a number of posts in the past in which people were hospitilised.

I hope from now on you will be able to restore your health slowly and be able to enjoy life a bit more and also that your child will also improve in Mum's improved health and confidence.

Reply

Reply to shaws

[FancyPants54]

I suspect a lot of us have failed to get a diagnosis at a time when treatment would have been easier because the damage was less. I had very serious glandular fever when I was 20. In hospital for 2 weeks in a private room next to the nurses station!! Dr P. says that something like 70% of his patients have had glandular fever so there could be a link there. I was back and forth to the GP over the years (not excessively, but in spates) for tiredness and weight issues. Thyroid was tested quite a few times and I was told "it's not your thyroid". But I suspect it was. Just before a private doctor diagnosed me with a TSH of almost 5, the GP had ignored the test that went back to him which the lab had flagged as over range. I now realise because it was still under 10. I do recall over the years being told my thyroid was 7 or 5 etc but I was fine. I just didn't realise myself what that meant at the time.

Now I am finally being treated they have left it until I'm suffering menopause at the same time (and what a nightmare that is) and so much has deteriorated about my body. This means treatment is proving hard and slow. And now I have the fight on my hands of "your TSH is still high but your FT4 and FT3 is in the reference range so you probably only need 1 more raise". That fills me with dread.

Meanwhile they tell me I must go on a diet and loose weight. I must exercise. I have raised cholesterol and BP. They don't get the connections at all. They look at this defeated, fat, exhausted and physically broken women and tell me its because I eat too much or don't move enough. Makes me want to hit them. I tried showing them photos of me taken on my 49th birthday. I was slim, tall, fit, happy and looked 10 years younger. This literally hit me like a ton of bricks 6 months later. Yet they still don't see that the past 6 years of deterioration is down to being hypothyroid and something they could help to fix. They barely looked at the photos.

[shaws in reply to FancyPants54]

They have to provide T3 to your T4 (if you are levothyroxine alone). Weight gain can be caused by levothyroxine when not on an optimum and quite a number of researchers have proven that T4/T3 is more beneficial than T4 alone.

Once you take your own health into your own hands, the better and more confident you will be. I will give you some photos and levo - when not on an optimum -

They have to forget reference ranges and concentrate on clinical symptoms. Everyone's hormones must be different - we arent machines but we have definitely contributed to the profis of blood tests and other medications for symptoms of Big Pharma ,except for the autoimmune condition at the root of the problem. Why do the BTA et al not read scientific evidence that levothyroxine doesn't improve every hypo patient or that weight is gained ? Weight gain is a clinical symptom of being hypothyroid so we wouldn't expect the hormone replacement i.e. levothyroxine to also be the cause but it scientifically proven:-

sciencedaily.com/releases/2...

Doctors tick us off and blame us, the poor patient, for eating wrongly or too many cakes or sweets etc. We would be entitled to eat sweets to cheer ourslves up but wouldn't need to if they did their jobs optimally

One of our deceased doctors - as well as Dr P - have stated long and hard that we, mainly women, are hard done by by the medical profession in refusing to take into account the clinical symptoms and that other countries diagnose when TSH is above 3+. I have no clue why the BTA states 10.

Tick off your clinical symptoms and present them to GP and he may have an idea what to do next.

thyroiduk.org.uk/tuk/about_...

[FancyPants54 in reply to shaws]

It's OK, I'm back on the horse and driving the cart (GP and private doctor) again now. I know what to do. For a time I just surrendered though, I was too tired and too ill to keep fighting.

My biggest fear now is that they won't let me keep raising my Levo. because they think that anywhere in the reference range is OK and I don't know what I would do then. I can't expect to get T3 in the UK right now and setting off on a mission to order in T3 or NDT from abroad with the UK potentially about to crash out of all normal known service from March next year due to Brexit, is a very frightening prospect. I suspect a lot of self-medicators are going to struggle to import, at least for a time.

[shaws in reply to FancyPants54]

They are so stupid and seem to be completely unaware that a hypo patient, under-treated gains weight - it is a FACT. Also unexplained weight gain befor we get diagnosed or after beginning levo. The stupidest priority given to doctors is that our TSH (in UK) has to rise to 10 before we're diagnosed - it is absolutely nonsense. As the saying goes - if it doesn't make sense it IS NONSENSE.

Dieting doesn't work until we're on an optimum dose of thyroid hormones no matter how much people diet. THEY blame us for something that is their fault, not ours.

Just in case you've not seen this:-

stopthethyroidmadness.com/h...

[FancyPants54 in reply to shaws]

I love those stories. I do wish they would update them and add more new ones though. They have been kicking around for a long time. Also, wouldn't it be great to go back to those people in the photos and interview them now and see how their treatment and wellbeing has been since then.

[shaws in reply to FancyPants54]

I don't think many people would like their 'before's' to be published. I think they were very brave indeed.

You'd have to contact STTM re the following:-

" Also, wouldn't it be great to go back to those people in the photos and interview them now and see how their treatment and wellbeing has been since then."

[FancyPants54 in reply to shaws]

Oh I know we can't do anything about them, I was just musing. I would think people would like to publish their before photos if they came with a great after picture! I'd be there like a shot. At the moment all I can do is a before when I looked good and a now when I decidedly don't!

[shaws in reply to FancyPants54]

Your aim now is to get your TSH to 1 or lower and the Free T4 and Free T3 in the upper parts of the ranges.

Tell your doctor this is what you want as you wish to recover your health.

The don't test the Frees so you may have to get them privately.

Also make sure B12, Vit D, iron ferritin and folate are optimal.

[Judithdalston]

Yes...fibromyalgia label, even though diagnosed as hypothyroid 12 years earlier. Unknown to me TSH had been allowed to rise, and ended up with fibromyalgia confined to sofa 24/7, so went down DIY route with added T3 to levothyroxin and high optimum Vit/ min levels..... getting better....

[shaws in reply to Judithdalston]

That's good that you are improving through DIY - we are forced to but the fact that we are learning how best to relieve our clinical symptoms is a great benefit to us as we don't have to rely on the medical profession who rarely know, nowadays, how best to treat patients.

[Judithdalston in reply to shaws]

Just wish and hope some others with fibromyalgia diagnosis try T4 and T3....the suggestion was not well accepted on sister healthunlocked Fibromyalgia forum sadly, so now having nothing to do with that site!

[Lily288]

To Shaws... Thank you. Finally someone to agree with me.... I have been doing some studying since my husband was diagnosed with Hyperparathyrodism by the doctor at the Long Term Care facility.....so yes, you're right, by this time, it was way too late so you can imagine my frustration when the hospital tried to disprove or prove themselves wrong by the tests and more tests they wanted to put him through and to have me sign papers for "after the damage is done!" and of course by then it was way too late to treat or reverse only because dead brain cells cannot be made whole again....<although recent claims state different) trying to fool innocent people once again.... and so now, more pills and more money on research and big Pharma. I don't think so! All for naught and he's gone now. They have won!

In my own case, after a car accident back in the 60's, and not able to tolerate pain pills to relieve muscle pains, I was diagnosed with "anxiety" duh....and given diazepam and no doubt an addiction was formed... the doctors know this but you're not told.... Fast forward, much later, gaining weight and feeling sluggish and such, my doctor offered the "in- pill" for high cholesterol, but since I'd been doing my own doctor thing, I refused that dangerous pill.....happy about that..... but in my studies, I then recognized, I could be having a thyroid problem.. This was around year 1980 .. I was finally tested and I was then treated with Eltroxin. But, at the onset, I could have been told by my doctor to exercise and eat better right then and there. That didn't happen right away but I have to be a bit happy that the Eltroxin did help but I did not stop studying.

I am happy to report that with a new diet of no fast foods at all, less sugar and exercises, what happened to me was that my Eltroxin or levothyroxine dosage became too much and I finally realized that my dosage of Levo was way too high and I felt like I turned hyper, so I reduced my dosage and I felt better... I reduced from 100mcg to 50 mcg and I am now down to only .25mcg. From 100mcg from year 1980 to less than .25mcg now, to me, is certainly a great victory.. it's good to be your own doctor. Thank you Shaws.

[shaws]

It is good you now feel well but first I am sorry your husband and you had to suffer throughout his illness.

I am a bit concerned that you are only on 25mcg of levothyroxine now as it is usually an incremental dose. If we don't have sufficient thyroid hormones we may inadvertently cause other problems (and I must state I'm not medically qualified). T3 which is converted from T4 (T4 being an inactive hormone) is needed in all of our T3 receptor cells of which we have millions, the brain and heart contain the most.

Regards.