REALY DISHEARTENED: Hello everyone , and all the... - Thyroid UK

Thyroid UK

143,113 members168,440 posts

REALY DISHEARTENED

astroscopesuk profile image
10 Replies

Hello everyone , and all the wise ones on this site,

I must admit im very disheartened at present, - my last meeting with my GP about my thyriod was that i was over medicated, but then he said he could add me back to the 125 mg, i used to be on, i tried it - but absolutely no effect, so i went back to the 100 mg levothyroxine and all seems to be ok apart from my huge lack of energy - which im putting down to the fact i had a mastectomy last year jan 18th and after the first time of having that dreadfull( litterally dread ) disease, and i had a lumpectomy , this time ive had my c....r ( im not sorry i dont give it any power()filled left breast removed, and another 25 nodes, which makes me think that my system is still trying to repairt itself - at 62, which is going to be harder for me to recover, being older, but im still here, and have to be there for my son too who had it in an embarresing area, and lost on eof his testacles , but hes still here too and in working order- the human body can be a wonderfull thing ! However , thelast time i saw my gp - he was totally unable to help me over the weight loss thing - ive tried everything i know and nothing works, he kees going on about calorie deficit and excercise , but i cant exercise as my whole left side is very very weak after my op, and i cant carry any thing and movement after my hip ops is very limmited ! yes im a bit of a mess ! my night time meds - make me very achy - amlodopene and letrozole( app - protection against the breast cancer returning )! but i put on two stone when my thyroid went , im not 10 stone ( the lbs go up and down from 1 to about 5 at different times) i dont eat loads, due to my ibs, and i cant lose weight what ever i do , i tried an exerise bike, - nothing i tried chair yoga, nothing ! i tried the 5 -2 and was advised against it , due to starving ones self, probably wasnt the best thing as i only lost about 5 lbs in 6 months !¬ im getting desperate, i absained from alcohol, all last year, only having a drink occasionally with my friends, i did dry jan and have decided im only having a drink if theres something social going on- i also get very very cold in these- low temeratures, i cant do any thing below 7 degrees, my raynauds suffers and i get very ill - i should be able to know how to deal with all this by now, but i cant do freezing, - i have to watch where i go as my immunes sytems pants , so my socialisng is very limited"- whats als o making me really upset is tat our area is going through another bowel cancer drive, and my surgery keeps endoing me texts, that they havent had my test, im not putting myself though all this at the moment as im still under the hospital i had the opp at and there very good at checking me - when i need to go for check ups- every six months still - imnot being pulled about any more than i need to , im depressed enough atm - i suffer fromSAD, TOO , ive got a mamgram at the end of march - on my only breast, and no doubt they will take a blood sample or ut me through -another machine, - they usually do - Sorry this is a bit long, but ive given up sugar, and i only eat fish, not often , and veg, and pulses- the only processed food i eat is bread, and i dont have a great deal of that - i try to find the best type of bread, amy be a ciabatta , with less ingrediants- as im convinced the food industry is poisoning us all ! i drink spring bottled in glass water- but if i drink too much water im on the loo all night - im at the age when the bladder- despite all the pelvic floor exercises is giving me grief - i dont know what to do now- im fed up with the gp now, ive been through most of them in my area due to them giving me no hope re the weight loss , and various wrong meds over time, i thought id found a g that could help and hes given up too , ive been with him now about 8 years, - i left the gp i went to when i was caring for my mum, in 2016 before she passed in 2017, and ive been with his gp ever since- im really feeling quite low and dont want to add my lowness to my sons agenda , but i dont know what to do or where to go to get my thyroid- properly diagnosed, my gp just seems to do the bare mionimum and says im optimally medicated, but this cant be so as if i was id not be feeling this sluggish, and id be able to lose weight !!! i just cant get below 10 stone at all!!! what am i doing wrong, ? Could anyone give me some new advice- or tell me where i have to go , i sort of remember bing told to go private over this but i dont inow where to go in london- i dont feel enlcined to enhance the docs salaries in harley street- they earn far too much !!! and ive got this horrid brain fog where i cant remember much either !! its not ALTZHEIMERS, im pretty sure, as i can cook a sunday dinner, but im so exhausted after standing to cook it - im wiped out for the next few day s!!!id be gratefull for some help please xxxx

much love ASTRO 16

Written by
astroscopesuk profile image
astroscopesuk
To view profiles and participate in discussions please or .
Read more about...
10 Replies
Regenallotment profile image
RegenallotmentAmbassador

hello, sorry to hear you are having a tough time.

I have a couple of ideas.

When did you last test FT4 and FT3? What were the results and ranges?

Have you tested your vitamins D, B12, Ferritin and folate?

I didn’t lose a gram until my FT3 was nearer top of range. Plus getting vitamins right helped.

Might you have an unexpected food intolerance? My IBS disappeared after giving up all dairy and gluten (others have lost weight doing that too).

Finally a mindset thing, I have no scales in the house any more. I aim to get stronger instead. It’s a long road a little at a time. Starts with body weight only once a week. Or once a fortnight, walking for 5 minutes more etc. taking the long way around, taking the stairs not the lift. Little things.

astroscopesuk profile image
astroscopesuk in reply toRegenallotment

Thankyou for your reply, unfortunately, my gp only does the most basic of blood tests, and always says - youre optimally medicated, Im fed up as he wont refer me anywhere else, ive asked for a referal to a dietician or endo and hes not having anyof it !

Thankyou for your time

Astro 16

SlowDragon profile image
SlowDragonAmbassador

First steps

1) do you always get same brand of levothyroxine at each prescription

Which brand?

2) always take levothyroxine on empty stomach and then nothing apart from water for at least an hour

No other medications or supplements for at least 2 hours minimum

Calcium, magnesium, iron, HRT or PPI at least 4 hours away

3) exactly what vitamin supplements are you taking

4) Get FULL Thyroid and vitamin testing 6-8 weeks after being on constant unchanging dose and brand of levothyroxine

Thousands of members test privately to make progress

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Only do private testing early Monday or Tuesday morning.

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

Come back with new post once you get results

astroscopesuk profile image
astroscopesuk in reply toSlowDragon

Dear Slow Dragon

Hello, again, i usually take the same brand of levothyroc=xine, its made by accord, and i take mine at about 6am well beofre i have anything to eat! i uesd to take it at night , but i thought as eveyone recommends taking it in the mornings id do that ! UNFORTUNATELY - as i mentioned- my GP only does the basic testing and then tells me im optimally medicated, !! which cant be, as im always tired, cant sleep and i have ibs and other gut issues- ive heard online that iodine helps- is this so ? and where or how would i get it? ive also heard that magnesium helps, and not to eat potatoes, or any of the nightshade veg, trouble is im a vegetarian - so this cant be hepful, i am so fed up as after all these years with this gp , hes just let me down , however thanks for all the links i will go thought them at some point ,,thjankyou for all you r help

kind regards

Astro 16

SlowDragon profile image
SlowDragonAmbassador in reply toastroscopesuk

So you need to get FULL thyroid and vitamin testing yourself

As a vegetarian you are likely low in iron/ferritin

Absolutely ESSENTIAL to test vitamin D, folate, ferritin and B12 at least annually

Low B12 can contribute to incontinence

Thousands of U.K. patients on here test privately

Come back with new post once you get results

Aiming for

Serum B12 over 500

Active B12 over 70

Folate at top of range

Ferritin at least over 70

Vitamin D over 80

humanbean profile image
humanbean

Every time I've had major surgery I've ended up iron deficient and/or anaemic. Doctors rarely consider this, even when the patient has lost a lot of blood. If people are quite low in range before surgery it won't take much loss to make them iron deficient and/or anaemic.

I was discharged from hospital after major surgery once and the paperwork said I was anaemic, and would my GP be kind enough to treat me for this. (I wasn't told.) This was in the days before patients could read their notes. I don't think anybody ever read the paperwork. I was still anaemic 2 or 3 years later when the condition was finally discovered and treated. I'd felt awful all that time and it could have been avoided.

I only found out about this cock-up in my 50s when I bought copies of my GP medical records.

astroscopesuk profile image
astroscopesuk in reply tohumanbean

Hello Human Bean

yes i agree , they just want to get you out of hospital as fast as poss, i feel so exhusted most of the time, i had major surgery jan 18th 2024, and im no where near fully recovered, however im glad im still here, but its not much of an existance, i have to look out for my 32 year old son, ( my daughter is jnow married and doesnt want to know me- her prob ) My son still lives with me , and hes dyspraxic, but hes got a job, and hes a great comfort, al though most of the time im looking after his dog, when he goes to work , hey ho we all have our crosses, but the other night i tried to do a bit of housework, and i was exhausted after a tiny bit, i have to do really samll areas of the house bit by bit, as cooking sunday dinner wipes me out for at least 2 day s- and becuse my left hip muscle colapsed, i have mobility probs since 2016, but my thyroid gives me ibs, tiredness, aches and pains and all the symptoms , !! i have heard that iodine is good for the thyroid is this so ? - My gp wont help me with weight loss or diet, he keeps on about a calorie defecit and exercise as this worked for him !! i cant exercise, i can t move far- hes not very empathetic ,,i dont know where to go to have all this tested, and ive got to look up private blood tests, !!!!

thanyou for your time- i hope you feel better soon

x ASTRO 16

inthedoldrums profile image
inthedoldrums

Although I was intolerant of Levo and it caused me lots of problems, one thing it did gradually clear up was my irritable bowel so I was then able to stop worrying about certain foods causing upset.

I agree with Regenallotment about getting rid of the scales.

I do not weigh myself, ever, as I think it is more important to get well first and reach an equilibrium before becoming too serious about trying to lose weight. I just keep a general check on how my clothes fit etc but try not to worry too much about it and manage to keep reasonably weight stable that way.

I do hope you manage make progress and will private message you a clinic I have used and found very helpful.

astroscopesuk profile image
astroscopesuk in reply tointhedoldrums

Dear Inthedoldrums

thankyou , that svery kind of you , i deffinitely havent recovered from my surgery although it was a year ago , and i have to support my son who also went through surgery for the same disease, i blame modern living- crap in the ater, and radiation everywhere and pfos and pfas everywhere , in your clothes - etc, all this greed has caused huge disease, and im fedup with htis - but with my thyroid prob- the levo hasnt cleared up my ibs, which i learn is a factor of hypothyroidism, but im still very tired, ones body doesnt recover easily or fast when youre older from major surgery - im trying to lose weight as i think i would feel better but even though i dont eat much, i did cut out bread but that didnt do alot, i decided that it wasnt worth it it was too hard trying to think of alternatives, im not a pasta freak, i prefer- fish and veg, i dont have a great deal of carbs, but i do like my roasties on a sunday , im a pescatarian , veggie s mostly, and i really cant eat a great deal, ive got oneof those hiatus hernia things, but aslong as i keep my meals small that sok, its just the lack of energy and the tired ness and all the nanny naps!!! i agree i shouldnt be overly bothered with everything, id just like to lose two stone so i had more energy !!!- yesid like to know a private clinic that you found helpful, i just hope it doesnt charge millions- it seems today that most gps as many have said on here know nothing about the thyroid!! and all they want o do is give you more pills not sort out the prob as they have less clients if they make you well !!! terrible the way things are to day !!!

thankyou for taking the time to read my post and answer

kind regards

astro 16

inthedoldrums profile image
inthedoldrums in reply toastroscopesuk

I have left a private message for you in the Chat bit above with the clinic details. I am sorry things are so rough for you and hope that getting the thyroid on the right track will be part of the jigsaw that fits for you. 🤞❤

Not what you're looking for?

You may also like...

raspberry keytones?

hello all again sorry ive not been on here. just been so tired going back to work ,,just seem to...

Under active Thyroid and cant lose weight at all. PLEASE HELP !

Hello all you lovely folk , I am looking for some advice, i have an under active thyroid and am on...
Astro16 profile image

Help I seem unable to shed any weigh weight

Hello Folks Im still recovering from my mastectomy in Jan 2024, its left me very very weak,( also...
Astro16 profile image

Low tsh, lots of symptoms!

Im new here and ive just wrote out the longest post that then decided to freeze so now im going to...
Kimethy profile image

Hello all, I saw my endo for the first time,last week,, i am still shaking , and sweating , and feeling giddy and have tinnitus,, he said

none of these symptoms are thyroid related,,!! i am still shaking badly in the mornings and at...

Moderation team

See all
GlowCoach profile image
GlowCoachAdministrator
PurpleNails profile image
PurpleNailsAdministrator
helvella profile image
helvellaAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.