Is this it?: Hi everyone, Not new to thyroid... - Thyroid UK

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Is this it?

yorkshiregirl44 profile image
21 Replies

Hi everyone,

Not new to thyroid disease yet the extent of the fatigue can catch me of guard.

I can usually only manage 6 hours up and about per day. Over the past few days this has been reduced to about 3. The fatigue is not just feeling tired but anythin i do that needs physical excersion causes me to feel nauseous and i become over heated.

Yesterday i went to visit a relative who is due to have an operation tomorrow and that has made me feel dredfull...i don not drive or walk anywhere only got involved in conversation. This disease causes so much isolation and visits to my GP achieve nothing as my bloods are always within normal ranges.

I have noticed that its my upper body strength that goes easily and causes the physical fatigue, not sure what causes the internal fatigue, sleep or no sleep nothing helps.

I know that there is no magic cure to all this just wanted a moan to people who can understand.

Thanks

Christine

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yorkshiregirl44 profile image
yorkshiregirl44
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21 Replies
Naomi8 profile image
Naomi8

I am in the same boat.Husband bursting with energy while I am becoming more & more housebound due to fatigue-which is both physical AND mental.Socializing is on a slow decline due to absolute exhaustion after using adrenalin to "push myself"

Quite anxious the impact this is having on our relationship.Feeling 20 years older than him.

Started to add T3 but hospitalized due to tachycardia.Now feeling depressed as well as exhausted.

My experience is

that this is the ONLY place people understand.Feeling very isolated both by the impact of hypothyroidism but also,by the lack of empathy & understanding,the indifference.

yorkshiregirl44 profile image
yorkshiregirl44 in reply toNaomi8

I do totally understand how you feel and maybe im lucky that i dont have a husband as im divorced i dont have that extra pressure. My sisters were going to a Beatles tribute and asked me to come, this is where people dont understand the exhaustion. First you would have to make yourself presentable, get to the venue, stay awake and alert through the performance, have enough energy to sit and eat a meal, chat to people, get back to the hotel and then in the morning get back home. I dont think most people outsude of here do understand at all...for me most days its about having the energy to eat, ahave a wash and then plan for when i can wash my hair.

I wonder why thyroid disease is the poor relative with the medical profession and viewed as an condition easily treatable with a daily pill....

Thanks

Christine

Marz profile image
Marz

I know most of us have tried many things to combat fatigue and there must be a wealth of information hidden away in posts on this forum :-) Have not tried it myself but some people swear by CoQ10 - something that is needed in EVERY cell of the body - in order to energise them. It is one of the many things negated by Statins I have read....

Do hope you soon feel better. Maybe when the sap begins to rise in the world of nature - so it will in us. ( Once told to me by a wise person when I was down ! ) I saw a field of red wild anemones today whilst walking my dog - they look so much like poppies from afar and were lifting their heads to the sun - and yes I realised Spring was here ( Crete ) and I did feel energised....

Listen to your body - maybe the hibernation period is not over yet. Did you increase your dose for the winter ? I have read that sometimes that is needed....and can help.

yorkshiregirl44 profile image
yorkshiregirl44 in reply toMarz

Lets hope spring does bring a new lease of life. Cant higher my meds as i get very strong missed heartbeats and fluttering.

Thanks

Christine

Marz profile image
Marz in reply toyorkshiregirl44

...oh dear - sorry to read that. Do hope you soon feel stronger. How are all your other results - like B12 etc. ? I know you are a seasoned campaigner in the world of thyroid but sometimes things get forgotten when we are feeling so tired....

What a shame you missed the time with your sisters. Must admit staying in is more appealing to me than going out too :-)

Hi, I'm the same, any slight exertion I sweat excessively get dizzy and nauseous. I think it my adrenals, I have low cortisol. No matter how much T3 I take nothing helps the exhaustion. I explained to my GP it feels like being sedated, so her response was to join a walking group. You're correct absolutely no understanding outside this group.

yorkshiregirl44 profile image
yorkshiregirl44 in reply to

Iv had the same said to me,,join a walking group....walking to the toilet is all i can manage. This is no fun i was in bed at 5 yesterday after cuttin some meat with an electric knife..thats all it takes to exhaust me completly.

Thanks

Christine

galathea profile image
galathea

No, it's not it. I have hashimotos and was diagnosed about 25 years ago. I have done the whole lot, t4, t3, several brands of NDT. Have been iron deficient, lowish d3 and not great b12. And I took cortisone for a couple of years when my adrenals were low. ( according to the saliva test). I was diagnosed with hypertrophic cardiomyopathy because of an enlarged heart septum.... But since taking NDT, the thickening has lessened..... The consultant says it must be operator error. :-). And I no longer have that diagnosis. I am 57, I have an allotment, I walk my dog. I go to Pilates twice a week, I go to boxercise. ( but not at the moment because of tennis elbow).. I do a weights class. I work about 30 hours a week as a self employed gardener. In my spare time I do DIY, paddle my kayak and I have recently picked up my saxophone again.

I sleep about 7 hours a night, I rarely need an afternoon nap.... The only bug bear is the weight..... Am about 3 stones overweight...... Grrrrr

I It has taken years to get myself right. I absolutely believe in testing vitamins and minerals, as recommended on here. And self monitoring all of the time. Aways get test results from the doc and any they don't do, get them done privately. At my worst I put the lot on my credit card...

There really is hope.... If the meds are not working, then itS either the wrong meds, or its something else. Time for you to start piecing the jigsaw together and stop relying on the doc maybe. First thing, testing... Adrenals, b12, d3, ferritin, iron sats , and full thyroid profile for starters.

Good Luck

G. X

faith63 profile image
faith63 in reply togalathea

galathea..it sounds like you are much improved, but if you do that much activity, and can't lose weight, something isn't right with your meds. You should be able to lose weight if you are properly medicated.

galathea profile image
galathea in reply tofaith63

Yep, you would think so.... I was 9 stone forever, then at uni I put on 3 stones... Dieted with slimming world.. Got to 9.3. And then got in a real mess with the t4 only no longer suiting me..... Since then I have been on t3, t4 plus t3 and for the last 4 years NDT. Which I buy myself. I feel fine. I don't drink, I don't eat ready made food, I don't much like carbohydrates.... And since I got to 9.3 in 1999, I have never managed to lose much weight at all.... It just goes on all the time. I am now 13 st 10. I did lose some on a 500 cal a day diet but its not sustainable. Most of the weight is round my middle. I just bought some chromium. Eating sugar makes my heart race and I feel quite ill..... It makes no sense..

G. Xx

faith63 profile image
faith63 in reply togalathea

Wow! If you don't utilize t4 well and the majority of ndt is still t4, then why not cut back on the ndt and add more t3 to the mix? sttm is saying lower to 1.5 grs or less and add t3. The only way i was able to lose some weight, was to stop the t4 all together. I was not able to tolerate enough t3, until i stopped the t4. Being unable to lose weight and only gaining, is a sign of slow metabolism and that is Hypothyroidism. I too get it mostly in the middle, but also, tops of thighs and arms. I am still not my normal body composition yet, but better than i was. I take Chromium..for 2 years now and nothing. It doesn't speed up the metabolism at all which is what you need. It is supposed to help blood sugar. Mine is on the high side. I think it is amazing that you feel well enough to exercise and have that much energy. That's great. I wish i was there. Do you have Hashi's?.

galathea profile image
galathea in reply tofaith63

Yes, I have hashimotos... About 5 years ago my antibodies were 1700 something... Although I have been diagnosed for a very long time. Have never tried t3 with NDT. Though last years blood test. (On 4 grains) showed free t3 over range at 9. So I went back to 3 grains......

G x

faith63 profile image
faith63 in reply togalathea

Dr Lowe moved his patients to t3 only, after using 4 grs failed to get them back to normal weight etc..it looks like you have some thyroid hormone resistance going on...or you would have terrible hyper symptoms from a ft3 that high. Using labs as a guide will just keep your dose way too low. With the t4 out of your system, i am sure you would do well.

yorkshiregirl44 profile image
yorkshiregirl44 in reply togalathea

Thanks....i have had all th tests you mentioned done and have seen DR. P, and other private tests. The missing piece of the jigsaw i am always trying to find and i am sure there is one. Iv a GP appointment this week, the first thing i need is for him to listen and not fob me off.

Thanks

Christine

in reply toyorkshiregirl44

Can you type notes for your Gp? I'm juggling other health problems too. Arthritis and interstitial cystitis, my Gp gets overwhelmed. I book a double appointment and treat it more like a business meeting. When I had a good Gp 3 years ago, she asked me to come in and see her every 3 weeks, so I was able to update her. I know if you have an indifferent Gp this can be a problem. I have left notes under each heading with my Gp, it's the only way they get an understanding.

My ex husband used to say anything other than coughs and colds GP's struggle. I used to tell him off, now I think he's right!

yorkshiregirl44 profile image
yorkshiregirl44 in reply to

I night try that..i seem to go back and forth with the same thing. Bloods done they come back ok and so on..its so frustrating, my daughter is coming with me this time..

halifaxlass profile image
halifaxlass

Hi,

Have you ever had your growth hormone levels checked ? I have a severe deficiency and am underactive, the exhaustion is unbelievable :-( I don't wake up with any energy as the GH is produced overnight, sleeping doesn't pick me up and also muscle weakness, I struggle to pick up a milk carton these days.

The hospital told me that thyroid & GH are the most common pituitary conditions but very few seem to have even heard about the latter !!

Best wishes,

Cath x

yorkshiregirl44 profile image
yorkshiregirl44 in reply tohalifaxlass

Hi Cath,

No i never did get my GH tested. Everytime i go to the GP im only allowed to mention one thing so i never get round to discussing other options.

Are you feeling any better since we last talked?

Thanks

Christine

halifaxlass profile image
halifaxlass

Hi Christine,

Nice to hear from you, sorry I've said all this to you before but so many people on here have chronic exhaustion so I keep posting !!

I thought I was doing a bit better but also started on meds for arthritis so not so good at present, bit like a creaking door :-( I'm so sick of doctors, the rheumatology chap at the hospital sent a letter that I think was for someone else so had to write to them & get it all corrected. No apology of course !! We're not meant to ask more than 2 things at my GP but he's usually looks bored after the first so I know what you mean. Have you seen an endo yet ?

Take care,

Cath x

yorkshiregirl44 profile image
yorkshiregirl44 in reply tohalifaxlass

Saw an endo last year..she said all my other symptom were not down to my thyroid,,,she wrote i had lost weight which i had not..at the time i said i was lowering my meds due to palps and anxiety attacks, she ssaid to keep on same dosage then she wrote to my Dr and said she had decided to lower them..i give up.

Iv got athritus as well and im sick of this pain day in and day out.

Dont give up posting about GH, its something thats over looked and i know my GP has never tested this.

The fatigue is terrible..my daughter called and i could hardly speak to her..no energy at all.

Thanks

Christine

halifaxlass profile image
halifaxlass

Hi Christine,

You wonder if they listen to anything you say at times but when I saw a nurse at my practise she said I needed to get my medical records corrected & that's why I wrote. Rheumatology tell me to take exercise but I can't stomach painkillers and this no energy business is a killer. Just have to keep hoping that one day something will improve & that can't come soon enough !!

Look after yourself,

Cath x

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