underactive thyroid symptoms still after medica... - Thyroid UK

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underactive thyroid symptoms still after medication

Purple_Mouse profile image
22 Replies

Hi there, I was diagnosed with under active thyroid 6 years a go, I take 75mg Thyroxine, but many of my symptoms are still with me..hair loss and hoarse voice mostly ~(the ones that concern me the most) my gp is reluctant to listen, telling me that my blood results are now fine and therefore nothing wrong, but why do i still have these symptoms? any help would be gratefully received

Thank you in advance

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Purple_Mouse profile image
Purple_Mouse
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22 Replies
Arab profile image
Arab

Hi Purple Mouse,

You may well be asked to post your last test results if you have them , and any other bloods that you've had done.

You can take photos of these and post them.

Arab. 😉

Purple_Mouse profile image
Purple_Mouse

how do i upload photos?

Arab profile image
Arab

In the part where it says write a post, there's a box that says upload photos.

Have a look. 🙂

Purple_Mouse profile image
Purple_Mouse

done x

Brubru profile image
Brubru

First thing read lots here. TSH should be 1 or lower so you'd feel better. Also ferritin is very low and you need that for conversion. Most GPs will be happy if your TSH is within range which means nothing. I've wasted 7 years of my life this issue. Get lots of information and don't allow these heartless doctors play with your life.

Purple_Mouse profile image
Purple_Mouse in reply to Brubru

thank you for your reply, its very upsetting when the GP makes you feel like it is all in your head (she pretty much said it) and all I hear is blood results are fine! How can I lower TSH?

Brubru profile image
Brubru in reply to Purple_Mouse

It wouldn't surprise me if you had left the appointment with a prescription for each of your different symptoms you're in luck! They gave me everything: antidepressants, diazepam, taxamide (spelling?) acid for my heavy periods, I was even offered a hysterectomy. Since self medicating NDT with guidance from people here I'm much better still struggling with my PMS though. Even if it's hard to understand or learn everything read a bit everyday till you feel secure to change. But I'd find a new doctor straight way. And work on that ferritin. Your b12 was tested?

Purple_Mouse profile image
Purple_Mouse in reply to Brubru

It wouldn't allow me to upload two photos for the second half of my test results, erythrocyte sedimentation rate (ESR) came up as abnormal on the results but edited as no action required, is there a way i can upload a second photo to this post?

Brubru profile image
Brubru in reply to Purple_Mouse

I don't know about uploading. B12 is there? I think that's the only missing? Oh and also your antibodies? Have you ever been tested to check if you have hashimotos? That would be important too. But people that know more than me will come and comment. All I know I've learned here.

Purple_Mouse profile image
Purple_Mouse in reply to Brubru

Have re taken photo to fit it all in if you would like to check, i don't really understand what most of it is im afraid lol

shaws profile image
shawsAdministrator

No wonder you still have many symptoms. You are underdosed when you have such a high TSH when on thyroid hormones. The aim is for us to have a TSH of around 1 or lower to feel well. Many GPs make a big mistake, which keeps us ill with clinical symptoms, when they think anywhere in the range is 'fine'.

Your GP states:-

" that my blood results are now fine and therefore nothing wrong".

I refute that and the only thing that's wrong is his knowledge of treating patients with too low a dose of thyroid hormones.

Email louise.warvill@thyroiduk.org.uk and ask for a copy of the Pulse Online article by Dr Toft (ex President of the British Thyroid Association). Highlight question 6 and make an appointment with your doctor and request to have an increase in your medication to bring your TSH down 1 or lower and, if still unwell after a number of weeks, ask for the addition of some T3 too. (some GPs wont agree but you can but try). Thyroiduk.org are trying their best to change mentalities in the profession.

thyroiduk.org.uk/tuk/campai...

Others will respond to your other blood tests.

Purple_Mouse profile image
Purple_Mouse in reply to shaws

Thank you so much this is very helpful, my voice can be so bad at times that if I am tired it can almost go and i feel like im swallowing all the time due to the feel of something there, had this checked (via camera) and reported as all clear, could this symptom be due to the TSH levels?

Clutter profile image
Clutter in reply to Purple_Mouse

Purplemouse, the high TSH flogging your thyroid gland to produce more T4 and T3 can inflame it and make it swollen. The goal of Levothyroxine is to restore the patient to euthyroid state and for most that will be when TSH is around 1.0 not mid-range. The only way to lower TSH is via a dose increase. Read Treatment Options in thyroiduk.org.uk/tuk/about_... and email louise.warvill@thyroiduk.org.uk if you'd like a copy of the Pulse article to show your GP.

_________________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

Purple_Mouse profile image
Purple_Mouse in reply to Clutter

Thank you so much, have emailed Louise and will be making an appointment with my GP next week, i had no idea my TSH needed to be around 1, if I am honest i just didn't understand my results and kept being told they were within normal range, I even started to think perhaps was just in my mind the symptoms, I was told my hair falling out was just alopecia and not related to thyroid anymore due to levels being normal! My gp said my hair looked fine, even though its half the thickness it use to be and always on my pillow, I told them about my voice, and how its worse when tired or drank alcohol I was just told to not drink alcohol or caffeine!

Clutter profile image
Clutter in reply to Purple_Mouse

Purplemouse, some GPs don't understand the difference normal and optimal can make. TSH 0.35 - 1.0 is also normal (in range) and I'll bet you'll feel a helluva lot better there than >3.

in reply to Purple_Mouse

This might help too, from the European Thyroid Assoc guidelines. "The serum TSH should be re-checked 2 months

after starting L -thyroxine therapy, and dosage adjustments

made accordingly. The aim for most adults should

be to reach a stable serum TSH in the lower half of the

reference range (0.4–2.5 mU/l)."

Lower half of that range - ie, anything from .4 to 1.45, I make that.

If you Google

"2013 ETA Guideline: Management of

Subclinical Hypothyroidism" you'll get the full doc. It is a very respectable reference source to reassure nervous GPs that going down to the bottom end of that range is considered safe by top endos, and it is also nice and recent.

Arab profile image
Arab

👍😉

Arab. X

Josiesmum profile image
Josiesmum

Hello Purple Mouse

Have you had your cortisol tested? I've only just joined the site but my daughter has all hypo symptoms despite having normal thyroid blood tests. On the suggestion of a listmate I requested cortisol to be tested and this is very low. Cortisol is needed for thyroid hormones to be used by the cells, so this is essential that cortisol level is sufficient. Good luck x

greygoose profile image
greygoose

Purple_Mouse, the problem is not your TSH as such, the problem is that you are not converting that T4 you're taking (Levo) to the active hormone, T3.

T4 is a storage hormone, it doesn't do much for you. And TSH only stimulates the gland to make more hormone. It doesn't directly affect the way you feel. It is high because your FT3 is low. And it's the low FT3 that is making you feel bad. It should be up the top of the range, but yours is right down the bottom.

Ranges were only ever intended to be a guide, not set in stone, as some doctors see them. Just because your level is 'in range', doesn't mean you're well. It's where in the range it falls that is important.

So, the problem you now have is that even an increase in Levo probably isn't going to help much - your FT4 would have to be way over the top of the range for you to have enough T3 to feel well.

So, what you really need is some T3 (Liothyronine) added to your Levo. But as your doctor obviously doesn't know very much about thyroid, there's not much chance of her prescribing it. What you need is an endo that prescribes T3 (just so you know what to look for). Hopefully, you can find one on Louise's list of good endos - ask for it when you email her for the copy of Pulse. :)

Brubru profile image
Brubru

Shame you're talking about food size! After all your comments on Poldark and the doctor in the house lol. Once the doctors believe they are gods, they should use their power to give us back the years they made us waste.

Purple_Mouse profile image
Purple_Mouse

Many thanks to all that have responded, it really does mean a lot to me, if only just to be taken seriously with my symptoms and of course the great information, I feel i have learnt alot these last few days, i have made an appointment with my gp for next week with all this information printed off and parts highlighted and hoping for a result, if not will then be booking myself into see an endo myself, will keep you all updated on the progress! I will also be requesting upto date blood tests on everything mentioned!

Again, thank you :)

marvalrus profile image
marvalrus

I found a doctor that has a theory - "You are not a blood test" Good thing I found her, because both my endo and GP think I'm a blood test. Look around and find another doctor. They are out there. Good luck

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