What to ask my GP???????: Hi everyone...I'm here... - Thyroid UK

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What to ask my GP???????

hazeljane profile image
41 Replies

Hi everyone...I'm here to get some advice please. Yesterday, I spent 7 hours in the medical assessment unit of my local hospital. Long story short, I was told that a tsh of 5.89 and tpo of 978 was "fine"....am I completely loosing the plot here or is that NOT fine. 2 weeks previous my tsh was around the 1.9 mark...I feel absolutely terrible. I won't bore you all with my endless list if symptoms. Alongside my thyroid issues I have been diagnosed with pernicious anaemia, but was also told that my level at 317 was fine and the consultant couldn't see why I was getting shots.

Ive to see my GP in the morning and I'm wondering what I should say to her??? She's a good GP and I can talk to her (thankfully) unlike the previous ass I had. Does anyone know in Ireland, is there any other option to eltroxin???? I am having really bad palpitations...maybe from the hashi's or I'm thinking the meds.

Oh my previous free t4 was 16 and free t3 was 21 sorry I haven't ranges to hand.

All advice/suggestions are more then appreciated....I feel like I'm loosing my mind here....thank you all.

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hazeljane
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41 Replies
Moggie profile image
Moggie

So you are still getting Eltroxin over there are you as it has not been available over here for months now - the substitute Mercury Pharma brand is but this is causing heart problems (namely palps) and there has been quite a few questions asked on here about it.

Moggie x

gracegirl78 profile image
gracegirl78 in reply toMoggie

Moggie,

Im in ireland, its still available here....oh, and t3 is not prescribed. Well, maybe if you go private but not othetwise!

hazeljane profile image
hazeljane in reply togracegirl78

Hi gracegirl, do you think it'd be worth my while going private...I'm getting nowhere over here it's a nightmare xxx

gracegirl78 profile image
gracegirl78 in reply tohazeljane

Can i ask where you are? Im in co mayo..you should ask to be referred to an endo by your gp, im asking cos there is meant to be a very good new one in mayo general hosp. I know there is also a recommended private guy in dublin, if you email thyroid uk they will send you the details x

hazeljane profile image
hazeljane in reply togracegirl78

Hi =) im living in Mullingar, co westmeath. I have already seen an Endo here in the midlands regional hospital and a referral has been sent "urgently" for him to see me again. I know hes supposed to be good at his job but hes yet to help me so I would be open to seeing someone else...thanks xxx

Moggie profile image
Moggie

Can I ask - did you say your FT3 was 21!!!! is this within the range?????

Moggie x

hazeljane profile image
hazeljane

Hi moggie,

Yes I'm on the mercury pharma brand of eltroxin levo thyroxine....serious palps that have me pretty much sofa bound :( yes my ft3 was 21...sorry I have no range for that I just caught a glimpse of the result off the stupid consultant yesterday. Sounds high to me but I'm not too sure....sorry my mistake my ft4 was 19.6 and I have the ranges for that 8.5-23. Thanks for your reply, much appreciated,

Hazel x

Moggie profile image
Moggie

Think you might have misunderstood me - do you still get your Eltroxin in a box that actually says Eltroxin?

And if you really do have a FT3 of 21 it's no wonder you have palps (that's is your ranges over there are the same as here - which your FT4 range roughly is). I would be making an appt with my GP urgently and asking her opinion as this really doesn't seem right. Does your GP know that you are having bad palps and that your TSH seems to be fluctuating so much?

Moggie x

hazeljane profile image
hazeljane

Also moggie, I'm having what can only describe as adrenaline rushes which in turn cause me to panic...heart palps with chest pains (ECG was fine I'm due a holter monitor next week), I feel unsteady/ dizzy all the time...sounds weird but I feel like I'm being pushed down, if that makes sense. Very anxious all the time. Hot sweats then freezing cold to the point of shaking uncontrollably...totally worn out both physically and mentally. My body feels heavy, my limbs ache. I don't mean to be dramatic but I feel like I'm fading away....my tsh when I got diagnosed in March was off the chart, couldn't be read in the lab so it was greater then 150 and my t4 was 2...I got bad hyper symptoms when starting on eltroxin so it gas to be upped very slowly...8 months later I'm no better :(

hazeljane profile image
hazeljane

Sorry our posts over lapped :) yes the box says eltroxin on it. I have only changed GP and my new one is just getting to grips with everything that's going on...she trained under an endo so I'm hoping she's clued in with everything. I'm very nervous :(

Moggie profile image
Moggie

I just cant understand why no one has done anything with a FT3 of 21. That's an awfully high level (I wish you had the range for this)

What exactly have you been diagnosed with?

Have you seen an endo and if not why not as, although you say your GP is lovely, she could be out of her depth with you.

Moggie x

nobodysdriving profile image
nobodysdriving in reply toMoggie

I would not jump the gun here to be honest, she 'caught a glimpse' of this result off the consultant screen, hardly in stone.....what I mean is: there could be a simple explanation of having glimpsed the wrong line or having missed a dot or whatever.

Hazeljane needs to get a print out of her results that is what she needs as a first step. Also I think she is being taken care of for any immediate 'emergencies', she spent hours in a medical assessment unit, has had an ECG and is having a Holter next. i don't think 'we' can do much more than that for now :) it sounds like she has bad Hashis and possibly very bad adrenal fatigue, the two will make it tricky and lengthy to get to recovery but it can be done.

hazeljane profile image
hazeljane in reply tonobodysdriving

Thank you :) here's hoping I recover soon xxx

hazeljane profile image
hazeljane

I have been diagnosed with hashimotos and recently with pernicious anaemia...the only reason my t3 was checked was because I requested it under the advice of a fellow member on here...I only caught a glimpse yesterday on the chart and it was defo 21 it was actually 21.???? But I didn't see the numbers after. I have seen an endo, and an urgent letter was sent to his secretary for he to be seen ASAP...I just don't know how long I can take I'm just feeling so sick and gave 2 young children to look after...I'm finding it impossible :(

Moggie profile image
Moggie

I've just linked the other admins your post to see if they can come up with any more suggestions.

Moggie x

hazeljane profile image
hazeljane

Thank you moggie I really appreciate it...I'm pretty list at the moment :( xxx

hazeljane profile image
hazeljane

Lol I ment lost :)

LouiseRoberts profile image
LouiseRoberts

How much levo are you on?

L

x

hazeljane profile image
hazeljane

Hi Louise....I take 100mg one day and 125mg the next

Thank you xx

marram profile image
marram

I may be silly but how can you have a free T3 of 21 with a Free T4 of 16 - and a TSH of 5.89? There is something completely skewed about these figures unless you are taking T3 as well?

Remember that heart palps and chest pains are also hypo signs. and with a T4 of 16 it is more likely to be hypo than hyper. Just a small point - many, many more people turn up at A & E with heart problems/strokes due to under-treatment than over-treatment.

That 21. sounds highly suspect to be honest.

nobodysdriving profile image
nobodysdriving in reply tomarram

also it could be a TOTAL T3 they have tested rather than an Ft3.....big big difference

hazeljane profile image
hazeljane in reply tonobodysdriving

That could be it :) I hope so

Jane104 profile image
Jane104 in reply tonobodysdriving

? They only test Total T3 where I am and the range is 0.9-2.8 nmol/l

hazeljane please ask for a printout of your results - ranges and units are so important.

Moggie profile image
Moggie

Could you phone the hospital and get the actual figures? as advice will depend on the figures.

Moggie x

hazeljane profile image
hazeljane in reply toMoggie

Hi moggie, yes I'll try and do that no problem thanks xx

Moggie profile image
Moggie in reply tohazeljane

If your T3 is really 21 can you not then ask to speak to someone - a doctor in A&E or an endo? or advise.

Moggie x

hazeljane profile image
hazeljane in reply toMoggie

I tried asking that yesterday and was fobbed off...a request for an appointment with the endo was sent off...unless you're a private patient over here they don't care...I'm debating weather or not to borrow from the bank and go see an endo instead of getting married. I couldn't walk down the aisle like this if I tried lol I look like crap :)

hazeljane profile image
hazeljane

Hi marram,

My t4 us 19.6 sorry I read the print out wrong when I first posted...I'm hoping I'm wrong in what I read yesterday at the hospital regarding my t3 but I'm more then positive that's what it said. I'm not taking t3 at all...I am in no mans land at the moment I just don't know what I'm supposed to ask for tomorrow...do I want my medication upped??? Lowered????

I do know something needs to change very quickly I just want to be prepared when I'm going into see her tomorrow...for warned is for armed :) I've been to A&E twice in the last month with palps and feeling like I'm going yo pass out...sent hone with an anxiety label and an antibiotic just in case....I feel like they think I'm making all this up, it's so frustrating :(

Hazel xx

shaws profile image
shawsAdministrator

Hi,

Re your palpitations and heart monitor etc., it sounds exactly what happened to me whilst on levothyroxine plus ECG's and always 'heart is fine'. I felt much worse on levo than I did before diagnosis. The only thing I can think of is a sensitivity to the binders/fillers plus maybe my body didn't like synthetic levo.

The more I reduced levo and increased T3 (I know it is a difficulty for you) the better I became.

To see if you maybe allergic to the meds Dr Lowe advises taking an anti-histamine one hour before meds. I am not sure if this will help you.

hazeljane profile image
hazeljane in reply toshaws

Hi Shaws,

Thanks so much for your reply....I'll mention this to my GP tomorrow...I just want my life back now...as I know so many on here do. I'm willing to try anything at this rare xx

shaws profile image
shawsAdministrator

On re-reading your post I have just realised you have been diagnosed with Pernicious Anaemia with a B12 level of 317 and you have been refused B12 injections - I am horrified. If you definitely have pernicious anaemia you must have regular B12 injections, otherwise serious problems can arise. I have injections and have been beween 1,000 and 2,000 at times. You can buy sublingual B12 vitamin from Amazon and it must be methylcobalamin as that is the preferable one.

Your stomach cannot absorb Vitamin B12 which leads to much more serious consequences. Your GP must send you to a Specialist or if the one you saw said no need for injections - forget him. A link:-

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

There is also the Pernicious Society which can advise you.

pernicious-anaemia-society....

Moggie profile image
Moggie in reply toshaws

Hi Shaws,

I think her GP has been giving her the shots but when she went to A&E yesterday the consultant questioned this, well that how I read it anyway.

Moggie x

shaws profile image
shawsAdministrator in reply toMoggie

Thanks Moggie

hazeljane profile image
hazeljane in reply toshaws

Hi Shaws...yes I've been diagnosed with PA and I'm getting (after battling with my GP) a shot once a week for 4 weeks and then "we will see" because I am within range :( I feel so disappointed and hurt that the system us letting me down...I'm convinced a huge amount of my problems are PA related. My dad gad PA and his levels where never below 300 and he spent months in hospital trying to figure out what was wrong....I'm too scared to self inject but I will however get the sublingual b12....does it work???? Thanks for the video it's very informing. Wish I could get a doc like him xxx

nobodysdriving profile image
nobodysdriving in reply tohazeljane

go on the pernicious anaemia society forum, loads of info there...also there is plenty of research that says if your levels are less than 350 you can still be very much full blown 'deficient', so it is 'atrocious' if your levels are not higher than 350 your GP says you are 'cured'!! Also if you had NEUROLOGICAL symptoms they should have given you shots every other day until all neurological symptoms stopped improving and then put you on 2 monthly shots (it is even written on BNF, british national formulary).

hazeljane profile image
hazeljane in reply tonobodysdriving

Thank you nobodysdriving...i know I should be getting the loading dose of a shot every 2nd day but my gp didn't give it because im within range...im so frustrated. I have an appointment in the morning at 8am and I intend to get some answers because I cannot continue like this...i really appreciate your help, thank you xx

Hennerton profile image
Hennerton

What medication dose are you on? How long? Some more background might help people to comment. It is obviously driving you to despair but I am sure someone will come up with some ideas. X

Hennerton profile image
Hennerton in reply toHennerton

Sorry for some reason this has only just gone. I sent hours ago, so now we know all the answers

Moggie profile image
Moggie

How did you get on at the GP's this morning.

Moggie x

nobodysdriving profile image
nobodysdriving in reply toMoggie

I'd like to know too, though she may have not been yet, GP surgery opened an hour ago :) (oh yes sorry she did say her appt was at 8am LOL )

hazeljane profile image
hazeljane

Hi girls I had no internet, sorry about the delay in replying....my doc is re-requesting my t3 levels as she hadn't a copy of the results!!!!????? So I'm playing the waiting game :( I just posted a question, would appreciate all your knowledge xxxxx

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