New member

Report post · November 21, 2009

Hi ,

If your GP says he 'is done' with you, then you may have to take matters into your own hands. Many of us had to do that and it is not as scary as it sounds. The first step to doing that would be to buy Dr. Barry Durrant-Peatfield's book - "your Thyroid and how to keep it healthy" . You can order it from Amazon from this site:

http://www.tpa-uk.org.uk/books.php

It is not expensive (under £ 10, I think) and ordering anything via this website will ensure that 5% will get back to the TPA. It won't cost you any more though. - Anyway, Dr. Peatfield is one of the medical advisors to the TPA and his book is brilliant. Absolutely everything you need to know about thyroid issues you will find in there. You may, at a later stage, even decide to go and have a private consultation with him, if you feel you can't go it alone. - But for now, reading his book from cover to cover would be a good start.

***I mentioned Adrenal fatigue to my doctor over the telephone on friday and he said it was unlikely as my electolytes and urea section on my blood test didn't suggest that would indicate Adrenal fatigue....

You won't get anywhere with any of the doctors or endos of the establishment - not even if you went privately. As far as they are concerned, adrenal fatigue does not exist.... The comment your GP made is correct from his point of view. Doctors only recognize the total failure of the adrenal function - which is an autoimmune conditions called 's disease. 's is an extremely serious and life threatening condition, because at this stage the adrenals no longer produce vital cortisol - and without any cortisol you die. An indication for primary 's would be unbalanced Electrolytes (very high potassium and very low sodium) as well as increased BUN and Creatinine readings, high Phosphorus and Calcium and so on....

And since you obviously do not have any such readings, your doctor assumes that you do not have any adrenal problem. - But there is a big difference between adrenal exhaustion or fatigue - which is what you are likely to suffer from - and adrenal insufficiency ('s). The clue is in the wording. Your adrenal function may well be knackered, but it would not be "insufficient". It is most likely still "sufficient", just too low for wellbeing. Doctors usually only recognize either 's or Cushing's (extreme conditions at opposite ends of the spectrum), but nothing in between. Adrenal fatigue, however, is extremely common, and since doctors don't help us here, we need to help ourselves by taking Nutri Adrenal Extra (NAX for short), Vit C and Q10, which is usually the minimum requirement. But your next step would be to find out just how bad your adrenal exhaustion really is. If you can afford it, the way to do that is to order a private salivary adrenal profile kit from Genova. Unfortunately that test will cost you £60 (and that is with a discount [usually it's £ 70] if you order the kit from below* and your GP is highly unlikely to acknowledge its very existence.... but *you* will know, and that's the main thing.

*In order to receive your test discount, please DO NOT order direct from their web site. Instead, contact Dr Nigel Abraham PhD, FIBMS of Genova Diagnostics in any of the following ways and quote Thyroid Patient Advocacy UK AS PRACTITIONER.

Tel +44(0)20 8336 7750

Tel +44(0)20 8336 7752 (Direct)

Email NAbraham@...

You do not need your doctor to do this for you (or to even know about it), and the results will be emailed straight to you. You can then post the results on here, and Sheila or others will explain them to you (although you also do get comments from the lab).

***Does anyone think I would benifit by visiting Bupa?

Not at this stage in my view. Do you think you would be successful in asking your GP for the FULL thyroid panel that I mentioned in my previous post? -or as a minimum at least check for Autoantibodies? - and perhaps all the minerals and vitamins mentioned? 'Anything' you can get out of your GP on NHS saves you money. You can have all of that done privately with Genova laboratories, but it'll cost.... If your GP will refuse, the best way to establish your thyroid status is with a 24 hour urinary thyroid screen from Genova... but that will cost you another £ 85 even with the discount (is usually £ 100). On top, I doubt that your GP would recognize such a test as "valid" since it is not NHS approved, so you would be nowhere nearer an NHS diagnosis, but frankly, if your doctor won't help you, then you have to help yourself. There are always ways around obstacles.....

But I am overloading you with information, and I realize you can't take all of that in just yet. Take it step by step and start by reading and sorting out your adrenal status for now.

All the best,

Report post · November 24, 2009

I have forwarded this message to the forum as Isobel sent it to

just me by mistake.

Luv - Sheila

NEW MEMBER - ISOBEL

I am a 46 year old female, normally fit and healthy and

taking no other medication. I was diagnosed with underactive

thyroid in July this year . This was discovered after a routine visit to

the optician, who discovered a spot at the back of my eye. An appointment

with an ophthalmologist was arranged who subsequently advised a visit to the GP

for blood tests. At this point I had dry eyes and sore joints but

wasn’t aware they were thyroid symptoms. To begin with,

my own GP had been checking for other conditions such as lupus and rheumatoid

arthritis so I was fairly relieved that it was “only” an

underactive thyroid, which I thought would be quite easy to treat. How

wrong I was. At this point I was being very active - swimming and

walking every day in the early morning. This was in an effort to lose

weight as I had gained one stone – I thought due to having given up smoking

6 months previously. I now know that this was yet another symptom.

My GP prescribed Teva Levothyroxine tablets 100 mcg once a

day. Within a matter of days of taking the medication I was starting to

suffer side effects – very restless legs, itchy skin, night sweats and

breathlessness. As the days progressed, I suffered hair loss,

constipation, severe joint pain (much worse than before – waking me up

during the night) and really disturbed sleep. Exercise at this

point became completely out of the question as I had no energy and was too sore

to even contemplate it. I became very depressed. After 3 weeks of

this, I went back to my doctor and she thought perhaps I had been put on too

high a dose too quickly. She cut my dose to half of what it had been.

I was then taking 50 mcg per day, to be reviewed after one month. None of

my side effects diminished in any way and I was still gaining weight due to an

increased appetite.

I went back to my GP after a month, crying like a baby, due

to feeling so bad, both physically and mentally. I should point out that

I had none of these problems before starting the medication. The GP said

there was nothing she could do until she got the result of blood

tests. Bloods were taken at this point, however after suffering for

another 2 days, I decided enough was enough and took the decision to stop my

medication. After a week, I went back for the blood results and the GP

said that I needed to take the medication as my thyroid was underactive.

The results were – TSH level 9.2, FT4 level 12.4 which meant nothing to

me, however I decided I wasn’t prepared to carry on feeling the way I had

been and didn’t want to go back on the mediation. I asked if there

was any alternative treatment. She said there was no other

treatment available and that I had no choice but to take the medication.

I still chose not to go back on the medication. My GP then said she would

arrange an emergency appointment with an endocrinologist.

Nine weeks later, I had my “emergency”

appointment with the endocrinologist (this was at the end of October).

During this time, I was still off the medication. My depression had

lifted. I still had joint pain but this was now manageable. I was

sleeping well so therefore wasn’t so tired during the day, however I

hadn’t managed to get back to exercising as I had been discouraged due to

the fact that my weight was still rising, despite my appetite returning to

normal and eating healthily. I am now 2 stone overweight and am finding

this is affecting my mental health. When I explained all my symptoms, the

endocrinologist conceded that he had no idea why I was feeling better despite

being on no medication. At this point I had done some research on the

internet and asked him about “armour” as I didn’t know

very much about it and T3 medication as I had read that it was good for joint

pain. He was extremely dismissive of both and raised his eyes as if

to say “not another internet patient”. After talking to his

Consultant, he said he wanted me to go back on the medication at 25 mcg per

day.

At this point I visited my GP again to let her see the

difference in my mental state after being off my medication for 9 weeks.

I felt well and was therefore very reluctant to go back on the medication,

albeit at a much reduced dosage, however I wanted to be seen as trying to try

to help myself, so agreed to take it. This time, I was given a different

brand, called Goldshield Levothyroxine. Yet again, within days restless

legs, restless sleep, breathlessness and constipation returned. However,

these did subside within a couple of weeks. The different brand, however

gave me one added side effect, i.e. hooded eyes which I hadn’t suffered

from before. I phoned the doctor to change the brand to see if it would

make any difference. I felt she was humouring me but she did agree to

change the brand and also told me to take it every second day which I

ignored. I felt, how on earth am I going to get better and lose weight if

I’m on such a small dose. The GP had prescribed 2 months supply,

which if I had followed her advice and taken it every second day, would have

lasted 4 months. I feel that she was therefore not expecting to monitor

this closely.

The brand was now changed yet again to CP Pharmaceuticals

which seems to have helped the eye problem, however my joint pain is getting

worse and restless sleep is getting me down as I am very tired. This in

turn is bringing back my depression. I have now been on this medication

for just over 2 weeks, the small dose for a month in total.

Yesterday I received my blood results from my visit to the

endocrinologist. These were only obtained at my request from the hospital

and after waiting nearly 4 weeks. Bearing in mind I had been off

the medication for 9 weeks approximately, the results were as follows –

TSH level 55, FT4 level 5.3 and TPO Antibody 518.70. Yet again, I have no

idea what this means. I have heard from neither the hospital nor my own

GP and am not due to see the endocrinologist again until January. I am

feeling dreadful and due to the fact I am a self-employed hairdresser and this

is my busiest working period in the year, I am finding it extremely hard

to cope.

I am writing to you to try and get some help and advice on

what course of action I should take to get back on track. Any information

you could give me on medication, diet, supplements, etc, in fact anything that

would help my predicament, would be much appreciated.

Use

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Report post · November 24, 2009

Hi ..

Thanks for the welcome....

My son is 40...has always been very fit and active ..He is finding this fatigue and pain very hard to bear....Maureen

2009/11/25 m W <karens.special1@...>

--

welcome Maureen-- I'm sure that ppl here will want to help you, but I am a lowly lol peon w/ no say. --- How old is your son.... You have gone to a lot of work for him I know I did too.

--Thank you for being wise enuf to wait then come back. Thanks, I think we are all real human. *********** karen michelli w ** in br Louisiana**********************************

From: Maureen Thornberry <berrymaur@...>Subject: new member Date: Wednesday, November 25, 2009, 12:12 AM

Ok...I am a new member...I joined just before all the posts about " stuff " started flying....

Needless to say I decided to keep a low profile for a while...LOL

Now you seem to have sorted it out...I will jump in and introduce myself...and then you can ask me to leave if you wish...

My name is Maureen and I live in Australia... .I do not have Fibromyalgia [which is why you might not let me stay...]

However my son does have it...He is not very good at finding his way around the computer so I am knocking my head against a brick wall trying to find something to help him....

He lives at home with us now and is on disability support because of the fibro...

He contracted two very nasty debilitating viruses which has resulted in the fibro.....He is over these now....

He is not sleeping, even with sleeping pills from the doctor and no pain medication is working either.....

The only things that do help are natural supplements like magnesium powder, vit C and liquid herbs that support the immune system but even so he is in constant pain and exhausted all the time.....

We eat a lot of veggies, fish, some chicken and very little red meat....I have bought a reverse osmosis water purifier and we are eliminating chemicals wherever we can....

I hope you let me stay because I think I could learn from your experiences. ..

By the way...I am a Christian... very tolerant of all faiths...I believe we are all entitled to be treated with respect and love...

Maureen

-- When you come to the edge of all the light you know, and are about to step into the darkness of the unknown: Faith is knowing that one of two things will happen.There will be solid ground to stand on....or you will be taught to fly...

[Author unknown]

-- When you come to the edge of all the light you know, and are about to step into the darkness of the unknown: Faith is knowing that one of two things will happen.

There will be solid ground to stand on....or you will be taught to fly...[Author unknown]

Report post · November 24, 2009

Maureen welcome to the group...we truly are a wonderful group just having a bit of a crack that needs repairing. As far as I'm concerned you are more than welcome here. I too have Fibro along with many many problems, as does many of us. We are a group with a lot of knowledge who can help you greatly. Glad you're here. in FL Sent from my BlackBerry® smartphone with SprintSpeedFrom: Maureen Thornberry <berrymaur@...>Date: Wed, 25 Nov 2009 10:12:56 +1000< >Subject: new member Ok...I am a new member...I joined just before all the posts about " stuff " started flying....Needless to say I decided to keep a low profile for a while...LOL Now you seem to have sorted it out...I will jump in and introduce myself...and then you can ask me to leave if you wish... My name is Maureen and I live in Australia....I do not have Fibromyalgia [which is why you might not let me stay...] However my son does have it...He is not very good at finding his way around the computer so I am knocking my head against a brick wall trying to find something to help him....He lives at home with us now and is on disability support because of the fibro... He contracted two very nasty debilitating viruses which has resulted in the fibro.....He is over these now.... He is not sleeping, even with sleeping pills from the doctor and no pain medication is working either.....The only things that do help are natural supplements like magnesium powder, vit C and liquid herbs that support the immune system but even so he is in constant pain and exhausted all the time.....We eat a lot of veggies, fish, some chicken and very little red meat...I have bought a reverse osmosis water purifier and we are eliminating chemicals wherever we can....I hope you let me stay because I think I could learn from your experiences...By the way...I am a Christian... very tolerant of all faiths...I believe we are all entitled to be treated with respect and love...Maureen -- When you come to the edge of all the light you know, and are about to step into the darkness of the unknown: Faith is knowing that one of two things will happen.There will be solid ground to stand on....or you will be taught to fly...[Author unknown]

Report post · November 24, 2009

Welcome Maureen,

I am happy to have you. This is actually a great group with very supportive people especially Pam and Sue. We are just having a rough spot. Your son is very lucky to have you. Hope that you will get a lot out of being part of this group.

G (NC)

From: Maureen Thornberry <berrymaur@...>Subject: new member Date: Tuesday, November 24, 2009, 7:12 PM

Ok...I am a new member...I joined just before all the posts about "stuff" started flying....