Feeling very sorry for myself today - so glad y... - Thyroid UK

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Feeling very sorry for myself today - so glad you folks are out there.

sheenah profile image
22 Replies

Just over a week before I hopefully get diagnosed. This just gets worse every day.

I will list my symptoms and see what you think. My mother, 2 aunts and a cousin had hypothyroidism, don't know whether that was Hashis or not. Mum developed it when she was older and was on Levo for 20 years before she died at 81. I am now 60, had 5 children, hysterectomy 25 years ago. I am a so called "professional" woman, I founded and run my own charity for people with learning disabilities - I haven't been to work since before last Christmas.

I am constantly tired and fatigued, could sleep all day, become exhausted after mild exertion. I have to force myself to get into the shower.

I am often very cold, can't get warm - I feel cold under my armpits (!)

I don't sweat - haven't for years.

All my body hair is gone, eyebrows disappearing, hair getting thin, falling out.

My throat has become very sensitive and uncomfortable, have to make a conscious effort to swallow. Can't wear polo necks as I feel I am being strangled. I have developed a raspy voice

Breathing has become very shallow and faster, sometimes fighting to breathe.

I have now significant hearing loss in my right ear.

My eyes are puffy and sore and I have become very light sensitive.

My face is puffy and pale.

My hands have become very dry and scaly with skin dropping off.

I have no appetite at all, don't eat unless I have to, yet put on 10lbs in 4 months. Been the same weight for years.

I get dizzy spells, especially in bed!!

I am depressed, although I have no reason to be.

The symptoms are worse in the morning, and improve later on in the day. Getting out of bed is almost impossible.

I went to the doctor having had blood tests TSH 3.14 (PM.test) T3 4.6 T410.0

He said that although I had all the symptoms the bloods did not agree. I showed him my low basal temps. He looked at me as if I was crazy. Wait for it - he said I was depressed. He said I'd better see an Endo. I said how long and his answer made me say I would see him privately.

His sec did not ring for a week, by which time I had arranged to go and see Dr Owen in Winchester. I asked for a morning TSH test - he said he didn't know why that would make a difference. I got to the nurse for the test - she said she didn't want to do it because the Lab would not test it so soon after the previous one. I managed not to scream or hit her and walked out..... What do think My Lovelies?

Lots of Love Sheenah xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

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sheenah
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22 Replies
HarryE profile image
HarryE

I think you some treatment! And a big hug xx :-)

sheenah profile image
sheenah in reply to HarryE

Thanks Harry! Sheenah x

chihiro profile image
chihiro

I'm no expert but you seem to have an awful lot of symptoms! Doctor is very ignorant when it comes to tsh if he doesn't know that the levels change during the day with them being higher in the morning and lower in the afternoon. I hope you manage to get a morning test done cause with an afternoon results of over 3 I am pretty sure you would be over (or at least close to) that magic number that doctors seem to be obsessed with if you had it done in the early morning.

You don't give ranges but the FT4 looks really low too so no surprise you are feeling the way you do.

Sending big hugs and I hope you get your diagnosis soon.

x

sheenah profile image
sheenah in reply to chihiro

Thanks very much! The T4 range was 7.9 - 20 .0 - I think! The first part of the T3 range was 3-8 but I didn't get the second half as he didn't give me the chance to write it down properly Thanks for your hugs and concern.

Sheenah x

Hennerton profile image
Hennerton

You must be so frustrated. I would be sobbing over my keyboard if I felt as bad as you sound. How did your GP explain all your symptoms, if he is so convinced you are not hypo? Does depression make our hair fall out and eyebrows disappear (classic hypo symptom he should be aware of). I think not. I wish you lots of luck with your endo appt. Let us know how it goes and if he will not give medication yet, I should be inclined to do my own thing, if I were you.

In the meantime you can see your GP and ask for important Vitamins and minerals to be checked. I am sure you will have read on this site about iron, Vit D, ferritin, B12 and folate. You could be low in these, which will make you feel even worse. Results need to be high in range and not at the bottom. My GP did not mention it, as I was just in range but I have been virtually anaemic for years, until I insisted on a full iron panel.

Btw, do you know the reference range for your seemingly very low T4? You can find out by calling your GP practice. You are fully entitled to know all the figures. Keep fighting. It is the only way! xx

sheenah profile image
sheenah in reply to Hennerton

Thanks for this. The ref range for the T4 was 7-9 - 20.0. I am not seeing an Endo - I'm seeing a homeopath as on TUKs list. If I don't get anywhere, I shall do my own thing - can't spend the rest of my life feeling like this. Listening to people on this site Endo's don't seem much cop either. Thanks for your concern! Sheenah X

sheenah profile image
sheenah

Thanks for this and for your concern! He said I had a good iron "store" and now I think about it high cholesterol - 7 ish (My foggy brain) nothing about antibodies. I shan't give up! Sheenah X

sheenah profile image
sheenah

Hello again - No I am not going to him for treatment but for diagnosis. It says on TUKs list that he favours treating people with Erfa and encourages your GP to do so. I want NDT, not Levo (If I manage to get anything via the NHS) !! He is a top brass homeopathy bloke, and I am prepared to travel 80 miles to see him - if not I will go my own way. Why does all this have to be so difficult? Love Sheenah x

HarryE profile image
HarryE in reply to sheenah

I know, it's not fair is it? Have you thought about trying nutrithyroid? I know it's not ideal for long term, but it might make you feel a little better?

sheenah profile image
sheenah in reply to HarryE

What is nutrithyroid? x

HarryE profile image
HarryE in reply to sheenah

It is a product made from bovine thyroid, marketed as a supplement. In theory it is hormone free, but it has had nothing taken out of it. So it appears to be a weaker, less consistent version of NDT. It comes from Nutri Ltd & you can buy it yourself without a script. Dr P recommends it and lots of people on here have used it

sheenah profile image
sheenah in reply to HarryE

Thanks Harry - I found it online. I'll look into it. I'm a bit loathe to take anything before this apt next Monday, but I doubt it would make much difference in a week! Nobody wants to take my damn blood anyway!!!!!! XX

HarryE profile image
HarryE in reply to sheenah

Much as I hate to prolong your agony, I would probably not take anything until they have taken 1 more bit of blood, assuming they will, as it will alter the results I think. I have 2 bottles of NDT sitting in my kitchen waiting til after my blood test on Friday. If they refuse again to treat me,i am going on it, but it's so tempting to start it now:-(

shaws profile image
shawsAdministrator

These links may be helpful.

thyroiduk.org.uk/tuk/testin...

thyroiduk.org.uk/tuk/diagno...

thyroiduk.org.uk/tuk/testin...

sheenah profile image
sheenah in reply to shaws

Thanks Shaws x

Kitten-whiskers profile image
Kitten-whiskers

Hello Sheenah,

It sounds like you need lots of TLC & some treatment. I am very impressed that you kept your cool, I did to start with but soon got fed up with the utter rubbish that was coming out of their mouth.

It sounds like you have all the symptons of being Hypo but also with you not being able to sweat & the breathing - that can be an adrenal Issue - Not something the doctors have much of a clue about either. You could always have the ASI test done privately - that will give you a clear pic of the adrenals performance throughout the day. As for lab results they seem to be pointless, never have they ever reflected how dreadful I feel. You sound like you are coping really well

and I wish you the best of luck

Keep on chatting with us - we have so much in common

Best wishes

sheenah profile image
sheenah in reply to Kitten-whiskers

Thanks for that x. I have sent for the Blue Horizon test kit, and will do the test very early in the morning to get the best TSH result. I am hopeful for my apt with Homeopath next week. I will give a full account afterwards. Thank God for this site - I would have got nowhere with everyones help and knowledge! Sheenah

Taffhamster profile image
Taffhamster

I may be completely wrong here (and please could someone more knowledgeable correct me if I am!) but I'm assuming the "iron store" he referred to was ferritin. When I was tested, my iron panel was at the low end of the "normal" range aside from my ferritin, which was fairly high – in which case it may be a sign of inflammation. High or raised cholesterol can be linked to hypo and low Vitamin D (Vit D shares a precursor with cholesterol. If you get optimum levels of sunlight on your skin, it converts to Vit D, otherwise it's stored as cholesterol.) Of course doctors don't know / don't care about this and start squawking about statins. Also (purely my opinion having read books by Malcolm Kendrick et al), high cholesterol isn't a problem within itself, just a possible indication of a problem.

sheenah profile image
sheenah in reply to Taffhamster

Hello

I like the idea of Dr's "squawking"!! Yes he was referring to ferritin. It was 550 in a range of 11.0 - 307 but my VitB12 was only 203 in a range of 120 - 625. I think they ought to employ someone who knows what they are looking at because clearly they don't. Have you got a diagnosis? Yes I too have read Malcolm Kendrick and fully agree. My husband was offered statins a couple of weeks ago, even though his cholesterol was OK and when he refused the Doc said he wouldn't take them either!! My cholesterol has risen from 3.9 to 7.4 in 3 years, while all the time I have gradually been becoming more ill. I am now starting to take Erfa along with a glandular for my adrenals and homeopathy, so it will be interesting to see what the cholesterol is like in 6 months. Good Luck and Keep Well X

Taffhamster profile image
Taffhamster

I've all but given up on my GP practice, TBH – I also have TSH within range (about 3.7 last time I was tested) so the GP refused to discuss hypo any further, and just got fixated on my cholesterol. It takes ages to get an appointment and when I go there, I just feel like I'm wasting my time. I'm thinking of sending them an all-or-nothing letter – basically here's what's wrong with me and how it's affecting my quality of life – and asking if anyone is prepared to work with me to sort it out, or if they'd rather I registered with another practice. But I've pretty much resigned myself to self-treatment now, with the help of online resources. Hope you're on the road to recovery too, and thanks for your kind wishes. xx

sheenah profile image
sheenah in reply to Taffhamster

Are you female? Your name does not suggest gender! Statins do nothing for women apparently, if they do anything for anybody. I think a letter would be a good idea, especially if you feel there is nothing to lose. I would certainly recommend, if you can, to go and see my integrative physician in Winchester. It was money well spent. High cholesterol is symptom of hypo anyway XX

Taffhamster profile image
Taffhamster in reply to sheenah

Yup, female and 45 years old so I'm hoping to get a handle on all this before the menopause strikes! Can you please PM me the details of your physician, including a website if there is one? I'm in London so Winchester could be doable for me. Thanks so much. xxx

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