Feel like I'm slowly dying.hi : Hi ,hope someone... - Thyroid UK

Thyroid UK

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Feel like I'm slowly dying.hi


Hi ,hope someone can help me out here. Was on thyroxine for sixteen yrs ,only ever classed as borderline. Was suddenly took off it as i was told it was that was causing fast heart rate three yrs ago. From then onwards only a few months after taken off it is started to go down hill ,felt really poorly ,limb pain nausea,fatigue,so backwards and forwards to docs ,diagnosed with b12,bit d and folate deficiencies which they said was classed as pernicious anemia. Treated for that with loading dose and three monthly b12 jabs . Still no better . Changed diet,changed medications ,cut out gluten . Also have become sensitive to most foods ,toiletries,dairy,sugars etc tried everything to no avail. Doc just fobbed me off constantly,so in Feb went to see a locum doc with a list of symptoms,including actually so fatigued and tired i was falling asleep with food in my mouth,muscles so painfully too. Slowly feeling as if the life was being sucked out of me. Doc gave me thyroxine back,after about three wks i felt wonderful,like this is the way i should of felt for the last three yrs. Loads of energy,no joint or muscle pain,felt normal.however the last few month I've started to really go down hill again worse than before,. My TSH levels were always between 4_5 ,doc won't do T3 and T4 . Was only put on 25 mg thyroxine and told to stop on that even after my last full blood test. Just had my b12 injection fortnight ago, not that I've ever felt any benefit from it .seeing a reamatologist in Nov , would he do tests for thyroid etc ,at my wit's end here feel like I'm will die before they diagnose anything . Thought please anybody.

14 Replies

Having been on Levo for 16 years your Dr should never have taken you off it, if needed then a slight reduction in dose may have been sufficient.

You clearly need a dose increase now as 25 mcg is a tiny amount to be taking, TSH should ideally be around 1 or lower with T3 and 4 mid to high in range.

Time to visit your GP !

Nasturtion in reply to bantam12

Hi bantam 12. So anything above 1 for TSH needs treatment?

Time to change your GP, I would say! This one is very ignorant.


If you can afford a private blood test, I'd suggest you get one.

All blood tests have to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours betwee last dose and test and take afterwards.

GP will not do a Full Thyroid Function Test and I believe an initial test will give you a more reliable outcome.

You need TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

Any one of the following labs do home pin-prick tests and make sure you are well hydrated a couple of days before blood draw.

Medichecks has an offer of some sort every Thursday but all labs are good.

Your GP should test B12, Vit D, iron, ferritin and folate. Deficiencies can also cause symptoms.

50mcg of levo is a starting dose. The problem is that many doctors seem to believe that once the TSH is somewhere in the range that we're on sufficient but the aim is a TSH of 1 or lower with an FT4 and FT3 in the upper part of the ranges.

When we don't have sufficient T3 in our body, it cannot function optimally. Why they don't test T3 I do not know. The seem to only look at the TSH result and it isn't from the thyroid gland but the pituitary gland. TSH rsies as thyroid gland is dysfunctioning.


No doctor should ever withdraw thyroid hormones as our body doesn't function and in fact make us feel much worse.

The aim is a TSH of 1 or lower with FT4 and FT3 in the upper part of the ranges. (the latter are rarely tested but we can get one if need be.)

If we don't have sufficient T3 in our body, our heart and brain in particular can be affected. T3 runs our whole system from head to toe.

Post your results with the ranges for comments and advice.

Nasturtion in reply to shaws

Hello Shaw's,got my results and posted them under the headline (results). Advice please if possible. I'm no medical professional but it think the doc has missed a few things here .

shawsAdministrator in reply to Nasturtion

I am sorry you've had no response to the post three days ago but you should now copy and paste it onto a new post it so that others will respond too, no one rarely responds to later posts. I note you've been given amytriptiline but this is the side effects but you shouldn't stop any anti-depressants suddently. I am amazed that doctors don't test the Free T3 before prescribing anti-d's. Usually we're too low on both FT4 and FT3 until on an optimum dose. (never stop anti'd's instantly). I am not medically qualified but on the other post I note a member has told you to change your doctor and I would certainly agree with that.

Looking through your posts, I see you've been posting on various sites trying to desperately get answers. How sad you're being treated in this ridiculous way by your ignorant GP. Please don't worry ~ you're now in the right place. You will get excellent advice and help on here from knowledgeable members.

Thyroid conditions are not as clear cut as Drs would have you believe, and their reliance on TSH testing is criminal! However, you're not alone...most of us have been through the mill with the ridiculous 'guidelines'. Have you got any results of past tests? You're entitled to free copies of them from the surgery.

Get tests done as suggested, which may have to be privately as most Drs won't do them, and post for advice. Learn all you can by reading/asking questions on here. You will get better 🌻🐝 x

Nasturtion in reply to Mamapea1

Thanks so much guys,i have just phoned docs for copy of m6 last four full blood counts. Will post to you as soon as i can. Just going round and round in circles and battering my head. I just know there's something not right as I'm good with my diet for diabetes,low carb healthy Mediterranean diet only ex virgin olive oil,avoid gluten ,most dairy and sugars as i seem to have become sensitive to them ,also have psoriasis vitligo ,and pernicious anemia which I've just had my injection for and according to results on phone my vitd and folic were good . Felt awful again this morning on waking .just so fed up. Sorry for moaning.thanks guys.

Mamapea1 in reply to Nasturtion

Well you certainly have your fair share of autoimmune diseases. I wonder why your GP didn't think you had Hashis/thyroid problems too? Why can't they listen to patients? It's so senseless the way you've been treated.

When you get those previous results, start a new post with them requesting help from members, then more people will see them and respond. Put the ranges in brackets following the results for easy viewing/assessment.

That 'hangover' feeling and pain in the morning is awful, I get that too, but I'm recovering slowly but surely thanks to advice from here. You will almost certainly need to privately test to get T3 levels ~ it's craziness that they don't do full testing on NHS 😡 Don't give up, help is on the way.👍 x

PS and when you see that Rheumatologist in November ~ he will no doubt tell you "you have fibromyalgia ~ take these tablets". I've been there.😕 x

Nasturtion in reply to Mamapea1

Thanks mamapea.xx

Hi it's not moaning it's a cry for help, many of us same

.......I too have vitiligo and psirosis.

Iv discovered I get some hashi motto antibodies. (All autoimmune ) so the gluten free really helps

I'm in a crisis at moment and feel I haven't moved on in a year but I have really,!, Lol

Small steps, something to maybe explore are adrenals strong or needing some support? and mostly healing the gut. (Seems it's the foundation of it all)

Loads of advice links and support on here x

Do you all think that if i explained how it felt when i was put back on thyroxine compared to now that he would(reaumatologist) do these T3 and 4 tests.?if not defo going to have a private test done. Prices are really good.need it sorting for sure now after three yrs of feeling crap. Think my ignorant doc always puts things down to anxiety with me having that for yrs. I know it's not as it's a completely different feeling. Thinking now ,has my underactive thyroid ever been treated properly,even all those yrs past . Mmm

DippyDame in reply to Nasturtion

My hypo was never properly treated in over 20 years ...until I found this forum. The first class advice offered led me to have private tests and to self medicate with T3 that I buy privately....however that source now has none available.

It's a case of two steps forward then one back!

However,, you have come to the best place and are in safe hands here. I have felt very much like you and could hardly function so there is light at the end of the tunnel.

I just followed advice very carefully..there is no quick fix but when you realise that you just have to be patient it gets easier and you will improve.

Most GPs are clueless about thyroid matters!

Good luck


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