Exhausted and disillusioned but ready to fight - PLEASE HELP *

[Guest guest]

Hi all,

I have been a member for quite a few months now, and I hope it's ok that I

included my original message from July 7th below so I don't have to repeat all

of my history. I have been reading up on, personally experiencing and

desperately trying to manage hypothyroidism. I am so FED UP, I cannot even

explain. It doesn't feel like I have much of a life anymore, well certainly not

a functioning body. I went from being a super active, happy, positive,

life-enjoying human being to a barely surviving disillusioned with doctors

person... I really need help and I apologise for the long email. I just need to

know what to do and how fast I can do it, which doctors exactly I need to go

see. I am prepared to pay/go private anywhere in the West London area or travel

for it too.

I have developed over years: an inability to handle stress, MANY very stressful

situations for extended periods of time, nervous stomach or digestive

(diarrhoea) issues, weak muscles before exercise - painful after, extreme

fatigue, depression, lack of motivation for living, lack of confidence,

inability to work (I went from being manager to unable to work without becoming

emotional), weight gain in the extreme, despite being an assistant at Weight

Watchers, dry skin, bloatedness, etc

I also only have one kidney (born that way) and it has always worked fine and

compensated for the other one, but recently, after years of trying to convince

doctors that Levothyroxine is doing nothing and my levels are worse than when I

started them, my GFR came back as mild to moderate impairment, so now I am

worried about my kidney too.

I have no idea if having one kidney means I only have one adrenal gland

(ad/renal = sits on top of the kidney), but wondered if all my years of

traumatic stress put a strain on my adrenal(s) too.

I did the questionnaires on this group for adrenals and they appeared to be

positive, although I have many more hypothyroid symptoms comparatively. The

number one symptom was craving for fat and salt, which I have always had. I

don't like sweet things, compared to salty buttery things. I use 'real' salt as

advised on this group, with an Ikea salt grinder as advised by Sheila. I have

always naturally had low blood pressure.

The Candida questionnaire came back mildly positive too.

My story is that I started suffering with depression and weight gain in my

mid-twenties, despite being a fitness teacher! I have been on Weight Watchers,

Craig, Atkins (the only one that worked amazingly which cuts out sugars,

and my grandfather is hypoglycemic) but that is now a no-go as too much protein

for my one kidney. I am now a vegetarian (I had done this in the past and felt

better than ever for that year of my life).

in 2008, in the USA where the upper TSH level is 3, I (once again for the

umpteenth time over years) told a doctor how awful I felt and asked him to do

every test imaginable and he diagnosed me hypothyroid at 3.25 TSH. At other

times it was as high as 7, and at first with T4 I got down to between 1 and 2

where I felt better (but also was vegan for a year then).... but I noticed that

each BRAND of synthroid, levothyroxine, generic, all had a different effect,

none of them great. One made my hair fall out massively and my nails dry

Since I moved to the UK to get married, I have been on the Activis (?) levo

brand and it is like taking NOTHING at all and my level was higher than it was

when first diagnosed.... so I quit the tablets a couple months ago, thinking

maybe being med-free would help... No! Weight gain continues as does depression

and yet I have just married the man I love and have no reason to be.

6 weeks later (now) my TSH is 7.75

I am so TIRED of going to doctors, of having them tell me they will up the meds

(I went from 100 to 125 to 150) and the meds do NOTHING. When I asked my doctor

for a combo of T4 and T3, she said " we dont do that in this country " and just

upped me to 150... When I asked her if she could test my B12, D, vitamin levels,

she said no, no point and everyone in this country is vitamin deficient, just

take a pill... I am starting to wonder what training doctors go through here.

So the only thing she has agreed to do is up me to 150, and at my request (and

my pharmacist's advice) she has agreed to switch me from Actavis brand to

ELTROXIN brand in case that makes any difference.. any comments on these

brands?? My pharmacist didnt seem to know about natural thyroid and said he

could get one other product called " PURE thyroid " which doesnt have fillers

etc...?? Bu tit is very expensive apparently... anyone heard of this?

I am off meds now, and waiting to see the kidney specialist in a few days before

starting them again.

*PLEASE* can someone tell me what to do? Do I take advantage of being med-free

and test my adrenal(s)? HOW do I do it, and how can I do it faster?? I have had

full thyroid tests from Genova before and I did not appear to have reverse T3

problems. Is dessicated thyroid the answer? HOW do I get that if so? My doctor

will not prescribe it. How do you find a good doctor here???

Please help by telling what to do, in what order and how I can do it quickly as

I want this resolved after 10 years of feeling like hell. We would like to have

children and I wouldnt dare start that process without getting my own body in

check first.

I just want someone to figure it out and to feel normal again. There is a little

more info (results) below in my former post.

Thank you all so much - how great that this group exists!

Sophie

------------------------------------------

July 7th:

Hi,

I joined a month or two ago and have been amazed at all the information and help

available here. I would love to benefit from your knowledge and experience too,

and so am asking for help.

My story is I was a normal-weight, happy, athletic person, then spent the last

ten years feeling depressed, overweight, struggling on extreme diets,

overwhelmingly tired, anxious, lost memory, dry skin, losing hair, clumsy

(bumping into doors) and finally very heavy periods drove me to the doctor's

wondering if I had had a miscarriage or a bleeding problem.

The doctor did tests in July 2008 and diagnosed me as hypothyroid. This was in

the USA as my TSH was 3.4. I started on generic levothyroxine (100) and felt

much better, my TSH was between 1 and 2 for a year. At times they switched me to

actual synthroid and I was fine although nauseous and constipated.

Then my insurance changed me to a different brand of levo generic and my hair

started falling out massively. 6 months later I stopped treatment when I moved

to the UK as I couldn't take it, and wondered if my body would adjust itself as

I was no longer stressed out and starting a new life.

So since I have been in England, I have been off medication for a year and sure

enough put on 40 lbs, feel depressed and tired, etc.. I tried so many NHS

doctors to find a solution, and was only given a pep-talk in the form of a book

called " Feeling Good " (...thanks...). At times I tested with a TSH of 6.9, at

times with about a 4. I even paid a lot of money to get tested through the

National Nutrition Clinic in London and here were my results in December 2010

and the Genova Diagnostics Europe reference range:

TSH 3.2 (0.4 - 4)

FT4 12.3 (10 - 22)

FT3 5.42 (2.8 - 6.5)

FT4:FT3 ratio 2.3 (2 - 4.5)

Reverse T3 0.38 (0.14 - 0.54)

Total Thyroxine 95.6 (58 - 154)

Thyroglobulin (TG) 20 (0 - 40)

Peroxidase (TPO) 20 (0 - 35)

I was glad to see my Thyroglobulin antibodies were normal, as in 2010 they were

tested and were at 769 !! No one ever could explain that to me.

Anyway, I would just be grateful for any kind of comments from others who have

had more experience or knowledge.

As an update, I managed to get my old doctor in North America to re-prescribe me

the synthroid, and based on that bottle of levothyroxine, my new doctor here in

London agreed to keep prescribing it to me. So I am back on levo 100 as of 3

weeks ago (brand : Actavis). I don't feel any side effects: no bowel issues, no

hair falling, in fact nothing at all.... is this normal? Will I start to feel

better soon? It is hard to trust doctors here considering the run around I was

given for a year.. have I done the right thing??

Thank you for any comments and thank you for this group!

S