Hello! Please Help!

[LottieT]

Hello,

I've just joined today so this is all a bit new to me but i am hoping there is someone who might be able to help me.

I was diagnosed with Hypo in September having suffered for about a year with symptoms of tiredness, sleeping all the time, aching muscles etc etc, it got so bad and after being told that I might be depressed I was finally diagnosed and am now on 100mg thyroxine.

I am however still and recently suffering from the symptoms and in fact in the last few weeks feel like i've gone downhill again. I went back to the doctor who told me that my levels are now normal so I should be feeling fine and that i might have ME!!!

I am obviously now worried and don't know what to do as I cannot see an ME specialist until the summer. I am convinced that it is still my thyroid making me ill but my doctor does not seem to think the same.

Any help/guidance would be much appreciated!

I am only 22 years old, and I am currently doing my PGCE teacher training (just) and really need to be better for going into school, please help!!!

Thank you for this forum and I look forward to hearing from someone,

Lottie x

[Mike]

Hi Lottie and

I am very sorry to hear you have been having issues at such a young age. At least you trying to work it out as a lot of people tend of ignore these symptoms and end up paying high price at the end.

You have just been identified with hypothyroidism and you say you are on 100mcg of thyroxine, that seems a little too much to me in just two months unless you have got no thyroid due to high antibodies.

How did you feel when you started thyroxine? Did you make any progress and felt any better after few weeks? Do you know what were test results before and after starting the thyroxine?

If that was a case of simple hypothyroidism, thyroxine would have sorted you out unless there are complications related to it.

On the other side, what on earth is "ME"? (Forgive my ignorance) I have never heard of this before? santa_angry I get so upset when something new comes up related to thyroid!!

Feel free to share your experience with us as it would be useful to other members who will be able to give you some guidance.

I wouldnt want to wait till summer for the appointment but in NHS, you have got no choice. Did you try searching for private doctors to see if that would help? Their one time fee is not that high so would be better than waiting for six months and suffering from all these issues.

Hope you have a lovely new year dadachris

[Mike]

Got it...

ME - Myalgic Encephalomyelitis - Another word for CFS Chronic Fatigue Syndrome

[LottieT]

Hello and thank you for your reply,

When I was first diagnosed my T3 level was 4 and my TSH was 74, and now apparently they are 'normal' although I can't remember what they are. I don't know if it is straightforward hypothyroidism or autoimmune, my doctor hasn't told me, maybe I should ask?

After about 5 weeks of starting thyroxine I did feel a bit better and was able to do things normally without feeling tired, however this only lasted about a month and since then I have been feeling awful. My dose was increased from 20mg to 100mg which I take now, however it just doesn't feel as if it is working, and even if I rest for a long time I still have no energy.

As my levels are now 'normal' according to the doctor he thinks that I might have M.E. which is Myalgic Encephalopathy, or chronic fatigue syndrome: http://www.meassociation.org.uk/content ... ory/38/83/

It is similar symptoms to Hypothyroidism, being tired, worn out, forgetful, aching muscles etc.

I will try looking for a private doctor, to look into my thyroid a bit more i think, but if my levels are normal should I be feeling better?

Thank you very much for your reply, It is so nice to hear from someone who understands how I am feeling,

Happy New Year to you too

Lottie

[David]

Hello Lottie
. Sorry to hear you are suffering but glad you have joined this group.

What you are suffering is a very common amongst hypothyroid suffers. When your doctor diagnoses you he will probably have given you a blood test. This will be for your TSH (thyroid stimulating hormone) and T4 ( a hormone produced by the thyroid.

There is a reference range for the results and for TSH it is about .5 - 5.5. It does vary slightly depending on where you live and for T4 the range is about 9.5 to 22 again depending on where you live.

To be diagnosed you will find that your readings have to be outside these ranges. (Some doctors won't diagnose unless you are a long way outside. )

Having been diagnosed then a large number of doctors will prescribe increasing doses of thyroxine until you readings come into the reference range. They then tell you that you are now in the normal range and therefore any problems you have must be something else. They couldn't be more wrong. They mistakenly call it a normal range, it is not it is a reference range.

Most experienced doctors will say that Hypothyroid sufferers do not feel better until their TSH is at 1 or below and the T4 is at the upper level of the reference range. So you can see that you may have a reading of 5.5 which is over 5 times what experienced doctors will say is right. They will then start to diagnose you with other problems.

So the first thing you need to do is to ask your doctor for details of your blood test. Then post them on this site and then other sufferers can give you some idea of what they mean.

For most patients there is no quick fix you will probably have been suffering for a considerable time and it will probably take some time to repair the damage done.

Try to learn all you can about the disease and do not take anyone's word for what you are told, that includes doctors and people like me, who do not have medical training . Always check for yourself. For example many sufferers will be mistaken and told they are suffering from depression. If you go to the Royal college of psychiatrists web site and punch in the word thyroid you will find over 70 hits and amongst them will be references that say that hypothyroidism is a direct cause of depression. It seem too many doctors and psychiatrists do not know this and prescribe anti depressives. These AD's can make a thyroid sufferer worse.

Sorry if this is a bit long.

Finally don't be frightened to ask questions. It doesn't matter how silly you may think they are. We all had to start somewhere and are still learning.

All the very best

David

[Mike]

TSH of 74 dear God....no wonder you couldnt do anything at all. Did you gain weight at that TSH aas well as your metabolism turns very low hence everything in retained in the body including water.

Don't just rely on your GP as they are not very helpful. We have all been there and to be honest, they just look at the numbers and see things in their books. When you try to tell them, you still suffering, they will label you as depressed patient as according to them your results would be spot on.

First of all you have to obtain test results from your doctor. Try getting all of them, before, after and any other results for the blood tests you may have given.

Second thing to check is your numbers. GPs usually check TSH (Thyroid Stimulating Hormone), if this number is within the reference range (Click here to see the reference range) then they wouldnt treat you any further.

A lot of people dont feel well when their TSH is more than 1 or 2 so if your TSH is more than 4, according to your GP, your result is fine but like you said, yourself wouldnt feel good.

Other factors which get involve are FT3 and FT4. These two numbers must be checked along with TSH to fully understand the real cause of thyroid issue. If any of these numbers are low (They should go up when TSH comes down) you wont have energy and will have all hypothyroid related symptoms.

Try getting yours results and then post it here and see what the numbers are

David was faster than me and said it all anyway

[David]

Hello Lottie

Whilst I was typing you sent in a reply.

I'll add you want to know what your readings are now. I am not sure from what you say, if you started on 20 mcg and then increased in one jump to 100mcg but if so that is a big jump. You should be raised on increases of about 25 mcg a time so you body can get used to the T4 which it has been without for a time. It then takes about 2 to 3 months for your levels to settle.

Regards

David