Self Treatment: Hi so for about a year I've... - Thyroid UK

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Self Treatment

Gill34
Gill34

Hi so for about a year I've suffered from chronic fatigue sometimes its so hard to get out of bed i get muscle cramp brain fog and thinning of hair.

I don't drink or over eat at all but my weight is piling on even after eating a healthy diet but with this fatigue it seems i haven't got the energy to do any form of exercising this is making me feel so low like life is passing me by

I have been tested for menopause 2 years ago and i wear HRT patches. I've had 6 blood test for thyroid and all of them came back as border line but GP says thyroid meds are happy pills and i don't need them I have tested all my vitamin including vitamin D B12 ferritin iron and all ok

I would change GP but i live out in the sticks and the next GP is miles away and really can't afford to go private

My family history my mum and 2 sisters both have low thyroid and on meds for this

I recently had heart test to see if that was a problem but test came back fine

So i am going to take the plunge in self treatment but don't no where to start i can get hold of t4/t3 but don't know where to start

Ive looked at lots of information about taken t3 only or taken both but joined the site to see if anyone else had self treated and how they started I'm just so desparate to function properly again as this is destroying me

So thats my story

40 Replies
SeasideSusie
SeasideSusieAdministrator

Gill34

Please post your test results, along with their reference ranges (these vary from lab to lab), and we should be able to help you. Tests needed are

TSH

FT4

FT3

Thyroid antibodies

Vit D (also include unit of measurement)

B12 (also include unit of measurement)

Folate

Ferritin

Gill34
Gill34 in reply to SeasideSusie

Hi this is my results about 8 days ago

SeasideSusie
SeasideSusieAdministrator in reply to Gill34

Gill34

You are severely hypothyroid and the raised antibodies confirm it's autoimmune.

I agree with SlowDragon you are in urgent need of treatment.

Once you are on treatment and feel up to it, make a formal complaint against the GP who refused to treat you, there is absolutely no reason for a wait and see approach. I am amazed you are able to get out of bed.

SlowDragon
SlowDragonAdministrator

Before considering taking any thyroid hormones you must get FULL thyroid and vitamin testing

Please add most recent results

All thyroid tests should be done as early as possible in morning before eating or drinking anything other than water

Low vitamin levels are extremely common when hypothyroid

Low vitamin levels tend to lower TSH .....so it’s essential to regularly retest vitamin D, folate, ferritin and B12. These frequently need supplementing to improve low vitamin levels

Have you had these vitamins tested?

If TSH is over 5 and symptoms then GP should offer trial of levothyroxine

See flow chart on top of page 2

gp-update.co.uk/Latest-Upda...

Gill34
Gill34 in reply to SlowDragon

Hi Slow dragon this is my results about 8 days ago now Ive had my vitamins done all ok because i have PA i self inject with B12 I hope they make some sense Spoke to my GP today but she still will not do a trial of thyroid meds all she says is the wait and see approach

SlowDragon
SlowDragonAdministrator in reply to Gill34

See another GP urgently or take these results to A&E

Your TSH is over 100

Ft4 EXTREMELY low

Ft3 is barely registering

You are in severe danger of going into thyroid coma

Do not drive

Get to see a doctor URGENTLY

SeasideSusie helvella RedApple

Please all comment on these terrible results

Gill34
Gill34 in reply to SlowDragon

Really is it that bad i was told i was borderline watch and wait she said today my husband home soon ill tell him Thank you

SlowDragon
SlowDragonAdministrator in reply to Gill34

I agree absolutely with helvella

Get seen now .....this evening

Print out these these results and take with you

Ft3 is almost zero

medicinenet.com/myxedema_co...

And absolutely definitely put in serious complaint about GP ,......once you recover

They should be struck off for serious misconduct

SeasideSusie
SeasideSusieAdministrator in reply to SlowDragon

Unbelievable. Probably the worst we have ever seen on the forum. Doctor should change her job!

helvella
helvellaAdministrator in reply to Gill34

I completely endorse what SlowDragon has written - you need treatment, not as and when your GP gets round to offering a trial, but urgently. Now.

You could, and probably should, call 111. If 111 cannot help, call 999. If someone can get you to an A&E sensibly, go. Now.

Too many doctors regard hypothyroidism as relatively minor because most cases are caught before the patients reach the state you are in. But when it gets that bad it is a very serious issue.

Please try to come back to let us know.

thyroid meds are happy pills

:-o

Arrrggh. Paraphrasing what someone posted here the other day, let’s remove this GP’s thyroid with a rusty spoon and see how happy he is without thyroid meds....

endomad
endomad in reply to Jazzw

Happy pills.... christ on a bike, just when you think you have heard it all another Dr sinks to a whole new level of dumb.

tattybogle
tattybogle in reply to endomad

"happy pills" ??Trust me, If they were any good for that, there would be people taking them to go to parties with. I've been offered many interesting things to take at parties , Levo is definitely not among them, for anybody , ever.

.....and party people will try anything..... some of them like taking Ketamine , for heavens sake.

If Levo makes you 'happy' , I must be 'doing' it wrong :) along with the other 116,750 people who've popped along here, none of whom comment on 'happy' as being high on the list of effects of treatment with Levo.

😂😂😂

Gill34
Gill34 in reply to tattybogle

Thank you your comment made me laugh

I would recommend going back to your GP. Push, complain if you have to, go to another GP, go private - its £150. You should not really take thyroid medication without supervision and its hard enough with supervision to get it right!Can you publish your results please?

Hi Gill if you phone your doctors surgery and ask for a printout of your blood results they have to give you them. They are breaking the law if they refuse. Tell them that you’ll pick them up in a couple of days. You can then start a new post with your results and get good advice from here. Hope that helps. Jo xx

Gill34
Gill34 in reply to Stourie

Hi Stourie i managed to get them

tattybogle
tattybogle in reply to Gill34

WTF !!No, really.... i mean it , these are among the worst thyroid results i've seen on here .

They are NOT borderline.

They are ' overt' hypothyroid.

They need treating immediately.

How you are able to still think in complete sentences i have no idea ,

You need to speak to a different Doctor as soon as possible. , like " first thing in the morning" .

If a Doctor has told you TSH over 100 with T4 and T3 both way below the bottom of the lab range is 'borderline' they need sacking , immediately.

This low level of thyroid hormones is potentially very serious if not treated quickly ...look up myxoedema coma. which despite it's name does not necessarily mean you are in a coma , but it's really not good and need 's sorting ,

I don't wish to scare you , but put it this way , i wouldn't want to be in a passenger in a car that you were driving right now.

Jazzw
Jazzw in reply to Gill34

:-o

I mean, speechless. Can your doctor not read results???

Stourie
Stourie in reply to Gill34

So a tsh of over 100 is borderline. Report him/her. Jo xx

tattybogle
tattybogle in reply to Stourie

Borderline between Conscious/ Coma maybe.... I'm still speechless.

Unbelievable a doctor has the cheek to call thyroid meds happy pills... Give me a fully working thyroid any day and you can have your happy pills. Cos they sure as hell aren't making me happy!!!! Feel like a before thyroid and after thyroid stopped working person. All my kids hear me say how tired I am , no energy, aching. Their like you say this every day ! Maybe every day now since had this broken thyroid didnt say it everyday before !!! Argh !!!! Sorry for the rant !!!!

Gill34
Gill34 in reply to Sleepyachy

I love your rant it made me feel better Thank you

Not much else I can add other than I hope you are ok, your GP sounds like a very closed minded fool. It’s a hard battle when you have to fight for your health and you’re rock bottom yet it’s worth it. You deserve to feel healthy & functional & no GP should ever make you feel any less. Borderline isn’t optimal, don’t forget that. Good luck & I hope you get the care you deserve xx

I strongly suggest you get hold of the actual numbers for your history of 'borderline' thyroid results. In my experience if a result is within the lab range , you will be told it's 'normal' not 'borderline'

'Borderline' results in terms of thyroid tests might well be "TSH 'a little over range' , but fT4 still within range "

This is a category in hypothyroidism diagnosis called 'sub-clinical ' hypothyroidism. Which usually means TSH over range (but under 10) with T4 still within range.

Some Doctors are reluctant to treat at this level. But if there are symptoms of hypothyroidism having an effect on daily life, and they have a 2nd over range TSH taken 3 months apart from the first , then NHS guidelines say they MAY offer a trial of Levothyroxine

TSH (Thyroid Stimulating Hormone ) is a signal from the pituitary gland asking for more/ less thyroid hormones (T4 & T3) to be produced. TSH rises when you don't have enough.

fT4 /fT3 are the actual thyroid hormones produced by the thyroid gland, people can still experience symptoms even when these are within range.

When getting results always make sure you are given the lab range that comes with the result , it's in brackets after the result like this eg. fT4 14 [12-22] You can only interpret the result with the range that comes with it , and there are many different ranges depending on which lab/machine did the test.

What is also interesting to find out is whether the TSH is slowly rising over time. and if the fT4 is falling. This is evidence of a worsening problem.

You could also ask GP to test for thyroid antibodies, TPOab (thyroid Peroxidase antibodies)

if these are over range it shows an increased probability that the person would eventually go on to become 'overtly ' hypothyroid ie . over-range TSH, with under-range fT4.

Raised thyroid antibodies may prompt a GP to start treatment for subclinical hypothyroidism if they were unsure whether to do so.

Thank you all as soon as i get back home i will post my blood results Thank you again

madge1979
madge1979 in reply to Gill34

The very best of Luck Gill .. come back soon After having taken your new meds . You’re about to become a very different person . Luv Mx🌹

Gill34, you poor soul, your numbers are far from borderline, no wonder you feel terrible. First things first, either see another GP tomorrow morning. Or as SlowDragon suggests, go to A&E with these test results this evening. You really do need and deserve urgent attention.

Later, you could think about taking a formal complaint against you current GP for gross negligence. How dare they treat you this way? And “happy pills”? One of the worst examples of gaslighting I’ve seen on this site (and I’ve seen a lot!)

Jazzw
Jazzw in reply to Localhero

And if you need some help to write that complaint letter Gill34, do let us know. I suspect quite a few of us are really angry on your behalf right now.

It’s not often I don’t know what to say but... Yikes. :(

Good lord.

I only pop on here now again as I’m fairly well now but I had to leave you a wee note.

YOU DO NOT HAVE M.E/CHRONIC FATIGUE.

After many many trips to the gp and A&E this is what I was told. I was actually relieved initially. Relieved I didn’t have cancer, or a brain tumour or something equally terminal. But that didn’t last long and with my gp’s words of “don’t look up the internet, there’s a lot of crazy, crackpot people on there who comment on ME” ringing in my ears, I duly looked it up. Very soon after alarm bells of thyroid, metabolism and chronic fatigue were popping out at me and I ended up on this forum. 3 years on here I am, not back to my old self but pretty damn close. I have a new life.

I cannot imagine how poorly you feel. My bloods were nowhere near what yours are and I felt bloody awful. With all the questions and fears that went with it.

As the people that really know what they’re talking about say, get yourself to A&E and start your journey back to health. If you do well on levothyroxine then that’s fab. If you need T3 go for it. If you need to source it yourself absolutely do and don’t fear it. People on here will help you through.

The very best of luck to you. You’re about to be a new woman.

And your gp needs their thyroid removed.. see how “borderline” they feel 😡

Take care MM x

SlowDragon
SlowDragonAdministrator

I've had 6 blood test for thyroid and all of them came back as border line

Would strongly suspect these previous results would also show you were very hypothyroid

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

healthunlocked.com/thyroidu...

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

Hi Gill34,

The members on this forum are brilliant and very knowledgeable; glad you joined and posted when you did.

I'm very new to all things thyroid but even with my limited knowledge I can see your blood results are terrible!

Hopefully now you will get the treatment obviously denied to you by your blundering GP.

Take care and good luck.

Omg!!! I’m new here too but even so I have learned to read results. SO SORRY - you must be feeling awful!! Thank god for this site and all the knowledge! Please come back once you’ve got your treatment and let us know how you are. Big hugs!! X

This is outrageous..... I hope you get the medication you need asap. Terrible way to treat someone. This GP should indeed be struck off. 😡

helvella
helvellaAdministrator

Gill34,

I'd be confident in saying that there's quite a few people here almost holding our collective breath waiting to hear the next instalment.

Hi everyone Thank you for all your comments sorry i haven't got back to you its been a lost few days So i took your kind advice and went to A@e where i was kept in I am now on medication Levothyroxine but was told it takes time at the moment cant really function at all but see how it goes when i get back on my feet and concentrate bit better are love to come back on site for any advice please Thank you all again

helvella
helvellaAdministrator in reply to Gill34

No-one wants to push you to respond - no need whatsoever to apologise.

That they did not send you home without treatment should tell you all you need to know about your GP. But that is something for another day.

You need to look after yourself - and be looked after as far as possible - and not over-do anything for now.

At this point some people ramp up their medicine too quickly and suffer. Others stick at their starting dose for a very long time and suffer. The trick is to increase dose at the best rate for you. Not meaning to confuse but if a dose increase seems needed, ask. If you get a dose increase and it seems too much, don't feel compelled to take it.

Come back and ask whatever you need as and when.

Thank you for replying. :-)

Scrumbler
Scrumbler in reply to helvella

As Helvella says the main thing at the moment is for you to look after yourself.

When you are strong enough to deal with this appalling neglect, this is a matter for the GMC, not a local complaint.

I wish you well 🌺

Localhero
Localhero in reply to Gill34

So glad to know you did that and have started to get treatment. Look after yourself and let us know how you’re doing in due course. ❤️

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