first visit to endocrinologist. He said althoug... - Thyroid UK

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first visit to endocrinologist. He said although i have thyroid antibodies , my thyroid levels are now in the controllable range and wont

astroscopesuk profile image
11 Replies

a problem ?All it means is that my immune system is attacking my thyroid- but he seemed to think all was well and no more damage could be done now) I was lead to believe that if you have thyroid antibodies that it will eventually destroy the thyroid.?

I found the endo very personable and seemed to know a great deal about his subject, and although i showed him my blood tests , and he said my cortisol levels were fine, most of my bloods were normal . I mentioned to him that i was still shaking and still sweating a great deal and still had tinitius,..I asked him what i could eat with this condition as i had previously hardly eaten for a few days and id put on another 8 lbs, which i found incredible since id hardly eaten,. Also i had some crumpets and the next day i was so ill i could hardly move i was in so much pain. He said i may have a problem with my stomach, so he would send me for some stomach tests later, in about three months,

I said i was getting really bad pains across my thighs and i was unable to sleep at night as i also sweat a great deal then too..and have to go to the loo a great deal. He has given me a 24 hr urine test to do , and says that my bloods show that i have no oestrogen which could be that i am menopausal and this is probably the cause of why i am feeling so bad,, also i cant go on hrt as my breast cancer was hormonal,and the sage leaf natural hormone may or may not help,, so he would think about putting me on colonadine after the urine test.!!

I was amazed he didnt call my thyroid disease hashimotos and said that it was just a varying degree of borderline hypothyroidism , and he said its very usual to have these antibodies with this condition!!

Im still very confused,, I took my brother as my memory is rubbish at the moment and i have to keep reminders of everything.. please can someone enlighten me about these aniti bodies as the endo said in some cases they can make the thyroid over active and in cases like mine its blocked it off entirely?

Please can someone unconfuse me?

my gp told me i hadnt started the menopause yet my endo thinks i have? i wasnt taking the sage leaf at the time of my last blood test.

Regards

Astro

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astroscopesuk
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Clutter profile image
Clutter

Hi Astro, That seems a positive consultation :)

Hashimoto's attacks can cause fluctuations in FT4 causing hyper and hypo symptoms as attacks start and stop. That makes it harder to stabilise medication in the early days. Optimal medication will reduce the frequency and intensity of the Hashi attacks and will delay the eventual atrophy of your thyroid gland but it is unlikely to recover and more likely to die. 90% of hypothyroidism in the UK is caused by Hashimoto's.

There seems to be a reluctance to call autoimmune thyroid disease Hashimoto's after the man who discovered it. Doesn't make sense as autoimmune hyperthyroidism is called Graves after Dr. Graves who discovered it.

Has either your GP or endo done a blood test to check menopause? If not, they're simply expressing opinions.

astroscopesuk profile image
astroscopesuk in reply to Clutter

Dear Clutter

THANKYOU for remembering and taking time to reply, they all seem to call it' different degrees of thyroidism' rather than the name hashimotos,..its strange!!

My endo said that my immune system has blocked the thyroid(but he doesn't feel that's a problem) and now they have the level under control my weight should stabilise too!! well last week i went to the Gp and i was only 9 stone, and this week i went to the endo and Im 9 st 8 lb and ive realy hardly eaten , i think ive had one meal a day ever other day, so how on earth i could have put on 8 lbs,, my body really doesnt like that,

I told the endo that i am still shaking and still sweating badly an that my hips and back and thights really hurt and that i found that if i eat certain things i cant move for the pain and the sweats the next day , so i was rather affraid to eat,, as the attacks i ve been having are diabolical.

He said oh now youre on thyroxine you can eat what you like,, !!!! well i dont agree with him there

i am having a hard time with food!! he didn say anything like you say, i said i didnt particularly want to have my throat cut to lose my thyroid, he says that never happens with hypothyroidism !! he said my levels are controllable and if they fluctuate they just up the level of levothyroxine,,!!sounds so simole doesnt it!!

He did however say that ive no oestrgen left and that could be the cause of my shaking and other painfull simptoms. I cant take the hormonal HRT as my breast cancer was hormonal, so i am taking sage leaf and evening primrose,, which he says may or may not work...!

however at some point ive got to do a 24 hr urine test as he testing my adrenals and he says after another couple of blood tests hes going to put me on another medication to help the sweats and things

I just want to be able to move properly and feel human again,. Yes I did have a blood est for menaupuse and gp said i hadnt had it and yet the endo says im having it,,!!!any way im off to the doctor today to find out why i had suck a bad attack after eating two crumpets and see if i can get some more time off so i can get myself walking again ,as i cant go back to work not being able to walk without a crutch,,..

I hope you are feeling ok at least

Regards

Astro

LouiseRoberts profile image
LouiseRoberts

Can you post your actual results please - with the reference ranges....Thanks! :) x

astroscopesuk profile image
astroscopesuk in reply to LouiseRoberts

Dear Louise

I have tried to cope and paste, but i am aware there is some system that you can post them easily but im unaware of how other than copying them out again ,, i have posted them once already .

Thankyou

regards

Astro

cc120 profile image
cc120 in reply to astroscopesuk

Supply the link to the previous posting of results and ranges, or simply copy and paste into this thread.

shaws profile image
shawsAdministrator

This is what Dr Toft who was President of the BTA says in an article in Pulse Online:-

Excerpt:

But if it persists then antibodies to thyroid peroxidase should be measured. If these are positive – indicative of underlying autoimmune thyroid disease – the patient should be considered to have the mildest form of hypothyroidism.

In the absence of symptoms some would simply recommend annual thyroid function tests until serum TSH is over 10mU/l or symptoms such as tiredness and weight gain develop. But a more pragmatic approach is to recognise that the thyroid failure is likely to become worse and try to nip things in the bud rather than risk loss to follow-up.

Treatment should be started with levothyroxine in a dose sufficient to restore serum TSH to the lower part of its reference range. Levothyroxine in a dose of 75-100µg daily will usually be enough."

If you wish to have a copy of this article, email louise.warvill@thyroiduk.org

astroscopesuk profile image
astroscopesuk in reply to shaws

thankyou

i am currently on 50 mg,, they say thats ok but i feel crap..

thankyou xx

greygoose profile image
greygoose

I've always been told that if you have Hashi's, your TSH should be suppressed in order to suppress any function of what you might have left of your thyroid and then the antibodies would stop attacking it. This would mean that you would save the remains of your thyroid in the hope that one day they find a cure for Hashi's.

I was told about ten years ago that my thyroid was completely dead. Well, after having survived six months without any replacement hormone whatsoever, I can tell you that it isn't! lol It's not very happy, but it isn't dead. So, I'm working on suppressing my TSH again in order to keep what little I have left.

I'm not surprised you put on that weight when you were eating so little. The thing is, you weren't eating enough! You need a substantial amount of calories daily to support your bodily functions. They all use calories! Digesting, breathing, your heart needs them to pump your blood around your body, and your cells need them to convert your T4 (which I presume you're taking) into T3. If you don't ingest enough calories, your body thinks your starving and takes measures to conserve what little energy it has. And one of the things it does is to cut down on convertion. Therefore you become more hypo. Therefore you put on more weight. I suggest you try eating more. Many, many hypo people have found that when they eat more, they lose more. That's hypo for you! It's an upside-down world!

Take care, Grey

astroscopesuk profile image
astroscopesuk

hello grey goose

thankyou for taking time to reply

I cant actually eat a great deal as i have a hernia and if i eat too much it hurts,, its small but i can feel it,,

im also frightened to eat too much as im frightened of putting on weight as I actually feel really bad if i over eat,,

and with this thing i have actually been almost crippled if i eat the wrong thing,, i had four crumpets over the course of a day and the next day i was sweating , and in so much pain i could hardly move,, and i was tested for a gluten intolerance,,

i know its a crazy upside down world i feel more than upside down right now,,

i feel like all my hormones went into a bar together and stuck like glue in a big clump and decided to have a fight with my thyroid and then melted together kept it prisoner ,,!! i have some funny images in my head i tell you..

i may post a few drawings on facebook lol..

however i know fear can do a lot of harm but the advice i get from gps and the endo is soo confusing,,

i saw another gp today who actually talked a great deal of sense but shes a locum and practices a distance from where i live,, typical,,,

however i need some advice on food that can support the thyroid without making you fat in the process!!!

Regards

Astro

mistydog profile image
mistydog

Try having a look at this. Perhaps you could try going gluten free anyway just for a trial. If things like crumpets upset your stomach, avoid them. Try sticking to meat/veg and rice. or spuds. Did you have butter on the crumpets? Is it your stomach, or your pancreas that is affected (right side or left side?!)

youtube.com/watch?v=IvUgcLQ...

astroscopesuk profile image
astroscopesuk

Dear misty dog

im vegetarian

Ive found that sticking mostly to proteins and things helps,,but im still finding out whats good and whats bad to eat,, its such a pain,ive never had any food alergies in my life.

thanks for the link

Regards

Astro

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