CFS/ME/Depression/fibromyalgia/polymalgia/rheumatica/carpal tunnel syndrome/brain fog/short term memory loss

[shaws]

I think quite a few of our members have been diagnosed with at least one of the above, if not more. Excerpt from Statement by the Chairman of the Vaccine Research Trust (Dr. Skinner).

Over 20 years, more than 10,000 extremely ill people - the majority women - eventually found Dr Skinner and through his care-full treatment had their lives transformed back to optimal health and wellbeing.

Most of these had severely underactive thyroid glands but had been wrongly diagnosed with other illnesses like one of the above conditions because their blood results fell 'within the normal reference range'.

Those who persisted with the idea that their Thyroid was to blame and were fortunate enough to find Dr Skinner were at their wits' end with GPs and Specialists who had no answers for their extremely debilitated lives and had failed to relieve their suffering. They had all been treated symptomatically with prescription drugs rather than finding the true cause of their illness.

(above taken from the Statement by Dr Afshan Ahmed and Judy Cheraton-Rice, Chairman)

So they are ready to go forward to publicise Dr Skinner's studies although they do expect obstacles to be put in their path. The first Paper they hope to publish is the matter of safety and efficacy of T3 and NDT in proven clinical use when funding allows.

healthunlocked.com/thyroidu....

[lola1956]

I've been diagnosed with all of the above !

[shaws in reply to lola1956]

It is disgraceful. No wonder people are so desperate particulary if they have no internet connection. No one who known them can understand how they feel and they'll believe the doctor who will probably say 'its all in the mind'.

[lola1956 in reply to shaws]

I've had no treatment offered just left to get on with it as best I can

[shaws in reply to lola1956]

Lola1956 it is disgraceful and I hope you are doing well with your own treatment.

[lola1956 in reply to shaws]

Thank you , I'm a work in progress but I am getting there .

[stiltzski]

I have been diagnosed with depression, carpal tunnel syndrome, CFS, fibromyalgia, but never with thyroid problems - despite my conviction I had them - until I went to see Dr Skinner. It was wonderful to find someone who understood and did not ignore my symptoms. I really miss my appointments with him and it is great that his work is not going to be forgotten.

[jezebel69]

As a psychotherapist I see many people who are taking antidepressants and when its difficult to uncover any real reason for their disposition I certainly wish I could request blood tests for them. CFS and ME are also conditions that drive people to counselling - needlessly I often suspect. I personally avoided surgery for my carpal tunnel at the last minute by my thyroid diagnosis. Not before time - I had presented symptoms for 8 years!

[Kitten1978 in reply to jezebel69]

You can request tests if you work for the NHS. If you don't, you can stil suggest patients see their GPs and ask for TSH tests, at least.

[jezebel69 in reply to Kitten1978]

Some of my work is NHS but I dont have any authority...but I do often talk about 'other disorders that display mental health symptoms' that either sends them to their gp or their own searches

[Kitten1978 in reply to jezebel69]

Hmmmmm, the way I see it:

if some of the people you are seeing are hypothyroid and yet GPs are referring them to you requesting therapy for mental health problems (we all know what the waiting lists for therapy/counselling are)... they are actively WASTING your time, patient's time and the NHS money ...You could be spending numerous sessions with a patient and still not seeing any results, while an adequate dose of thyroxine could help them recover.

Even if we leave the ethical issues aside of, it's an enormous waste of money and resouces (meaning your time). You could be working with somebody who isn't hypothyroid and actually helping them recover from depresion, anxiety etc.

I understand it's scary and difficult. I just think we all need to be braver and scream louder that this isn't right.

[Kitten1978 in reply to Kitten1978]

and I don't mean to be hard on you. Take care xx

[jezebel69 in reply to Kitten1978]

LOL its ok I dont feel battered! Unfortunately it doesnt work quite like that. The NHS counselling in our area is available by self referral - they just get 30 mins assessment from someone less qualified than me! Then the patient gets channelled through the least expensive option (thats me) I can only suggest - and I do.

[Kitten1978 in reply to jezebel69]

I'm glad you do You have a better chance of spotting a potential thyroid sufferer than most people! Once you know what to look for, and we know it from our own experiences, it's not difficult to notice...

[jezebel69 in reply to Kitten1978]

I spend my entire working life looking at eyebrows lol

[shaws in reply to jezebel69]

Lots lose body hair.

[jezebel69 in reply to shaws]

Fortunately (as the human body is frequently less attractive than we would like) I dont ask anyone to strip off.....

[Kitten1978 in reply to jezebel69]

I wonder what your patients must be thinking lol

xxx

[jezebel69 in reply to Kitten1978]

I'm kind of hoping they are thinking how well I am listening because that would be 100% correct. I listen with my ears and by watching body language - hearing tone of voice - seeing facial expressions. Eyebrows fit in there somewhere

[UrsaP]

I found that when I stopped T4 in favour of T3 the CFS fibromyalgia and migraine disappeared in days. Was 20 years of T4 causing it for me.

[shaws in reply to UrsaP]

Why must people suffer unnecessarily so? The professionals are supposed to be 'professional' and 'knowledgeable' but it is the patients who seem to be now, thanks to the internet. How many thousands must be having a terrible life and being told they have mental health problems, depression and a myriad of other conditions and being treated for them and not hypothyroid.

[shaws in reply to UrsaP]

Dr John Lowe (RIP) ran the Fibromyalgia Research Foundation and he found that people who had it were 'thyroid hormone resistant' and that only T3 relieved the suffering of patients. Some had to have very high doses to do so.

Fibro etc were only named about ten years after the introduction of levothyroxine and the blood tests. Before that our symptoms were how doctors diagnosed and prescribed NDT.

Just as today, still, we are diagnosed and treated according to the TSH, it is rare to have FT4 and FT3 checked but are given other prescriptions for the symptom instead, so the patient is permanently unwell for want of thyroid hormones which suit them or given an optimum dose which relieves them.

Many researchers have found that most hypo patients feel much better with a combination. Those members who have been on a combo or T3 only has had the T3 withdrawn.

[UrsaP in reply to shaws]

Certainly swapping to T3 only resolved my fibromyalgia.

[shaws in reply to UrsaP]

It is disgraceful they do not even given someone a trial (of a decent dose) when not getting better on levo. I'm glad it has resolved your fibro.

[UrsaP in reply to shaws]

Thank you shaws . T3 cleared the CFS, Fibromyalgia and migraine, noticeably within just a few day. And 7 years on still clear. It infuriates me that human beings can still be treated in this way in this day and age, and in a supposed civilised country.

[shaws in reply to UrsaP]

Many on this forum feel the same. We should be able to have options if not getting well with levothyroxine. We know that many have no problems with levo but there is a section who do not and we should have what makes us well, not what makes us to be very unwell.

[UrsaP in reply to shaws]

I suspect that there is many more who are not getting on with T4 than we realise, trouble is they don't realise themselves. I live in a relatively small village and in just a couple of hundred meters, there are 6of us with HypoT, I am the only one on T3. And the others say they are ok but then say they are aways tired and ache...etc...two close neighbours also have family with the problem. None of these people whom I spoke to knew what was happening. It is so shortsighted to leave just one medication on the market when the controversy is with all!

[shaws in reply to UrsaP]

Also people remain undiagnosed due to the TSH alone, whilst ignorance of clinical symptoms is rife which all doctors used to diagnose patients.

When they go to doctor complaining the GP says but your tests are normal, so give them a prescription for the symptom.

[UrsaP in reply to shaws]

Yep, was looking back at my records earlier, Goitre and antibodies in 1982 Eye problems started in '83. Hypo diagnosed in 1992! Damage done!

[shaws in reply to UrsaP]

We cannot turn the clock back unfortunately but it can only be negligence, no other word fits.

[hebden]

All of the above and more. After many many years of being told the usual "normal, "depressed" or its this or that and have this anti depressant or PPI or lose weight and you will feel better, etc. Last week I saw a GP who actually listened to me when I told him of family history of hypothyroidism and the many many symptoms which have increased year on year to the point of life changing. He did hesitate a little but then said I should have a trial of levothyroxine. I was flabbergasted that I didn't have to put up the usual fight and get accused of being depressed! As for carpel tunnel having had surgery over 8 years ago (before I knew this could be a thyroid symptom) I have recently been told it has returned so goes to show surgery isn't the answer. xx

[shaws in reply to hebden]

He should have given you 50mcg and take it first thing with one full glass of water and wait an hour before eating. Food interferes with the uptake. Get a blood test in six weeks and I assume you know the procedure

Hopefully as your dose of levo is increased your carpal tunnel will go.

[hebden in reply to shaws]

Thank you shaws. Yes I was given 50mg of levo and thanks to reading posts on here I knew it has to be taken hour before food and not with supplements for 4 hour gap. Hope Ive got that right? Thanks for telling me it should be first thing I wasn't sure. Do you think the GP will increase levo? He seemed a little reluctant to give it to me but then said hopefully I will start to feel better! I was diagnosed with fibromyalgia in 2014 and just left to get on with it but I have always thought this was just so they don't have to deal with me. I now hope this is the start of feeling like me again. bless you. hugs Joolz.x

[shaws in reply to hebden]

email [e-mail] and ask for a copy of Dr Toft's Pulse article. (it's the doctors magazine) and he was President of the BTA and highlight where your TSH should be and show your GP and say you want sufficient increases to bring your TSH to this point. I believe its question 6.

[hebden in reply to shaws]

Thank you shows. sorry for late reply had a bad few days of pain (I have osteoarthritis too). You are so supportive thank you. hugs Joolz.x

[Wishingwell]

Yes fibromyalgia also for me went after stopping levo and starting NDT ... doc won't listen and only interested in TSH ... wish there were more like Dr Skinner.

[AmandaK]

Yep, CFS/ME, depression and, of course, menopause! Although having said that my naturopath is suggesting I may have/have had progesterone deficiency which has caused oestrogen dominance (I also have polycystic liver which is fed/worsened by oestrogen). Now I'm postmenopausal it's getting very difficult persuading GPs to test for hormones as it is obvious that my progesterone levels will be low.

The naturopath has run in-depth tests for mitochondrial dysfunction and found I am not utilising glucose properly in the ATP processing. I'm also low in magnesium and other nutrients.

Regarding thyroid, as my TSH has always been in the normal range GPs won't entertain the thought of hypothyroidism. Private testing has shown FT3 and FT4 to be lowish in range. I have Thyroid Gold in my cupboard waiting to be taken but I'm reluctant to be honest even though it was the naturopath who has advised I take them. I'm discussing this with him this morning.

I hope and pray Dr Skinner's work will be given the attention and kudos it deserves.

Amanda

[shaws in reply to AmandaK]

Dr John Lowe was an Adviser to Thyroiduk.org before his death and it was he who invented Thyro Gold to enable people to source a product that needed no prescription.

It is his widow, Tammy, who now deals with this side. This is a Chapter which may be helpful if you've not seen it before.

web.archive.org/web/2010112...

[AmandaK in reply to shaws]

Thank you Shaws, I've not seen this before. Very interesting. And having just seen Diogenes' message and Dr Kindler's comments about the need to look at the whole endocrinological picture it's making even more sense.

I talked with my naturopath about Thyroid Gold and he says I'm ok to take it as it contains 'glandulars' not hormones (though I thought it did contain T4 and T3). I have been hesitant as it's some time since these have been tested (apart from the Genova urine test which showed T4 at nearly below the range. However, the naturopath isn't familiar with the use of urine tests and it would appear that others on the forum are not convinced by the reliability of this kind of testing).

To confuse matters slightly, recent NHS testing of TSH has shown a marked lowering (2.01 range: 0.35-4) from last time (3.14, I think - don't have access to this at mo). Not that TSH is of that much value, as we know.

Thankfully, I have seen another GP re: testing for progesterone etc and now awaiting results.

So we are getting there.... V slowly!

[lc1973]

Interestingly i had hashimotos first, then diagnosos of fibro/CFS and then later on ME was suggested all of which subsided when levothyroxine was opimised!!!