Hi . I’m new to the group. I think I’ve had an under active thyroid for some time, as looking back I had all the signs and symptoms. But because I have suffered from chronic pain after back surgery and 2 full knee replacements I was told I was depressed(yes!) or it was my pain meds. I’ve had a terrible time over the last 16months. My husband died only 5wks after diagnosis of pancreatic cancer. I was already feeling quite unwell myself but was told to find a good psychiatrist...Last year I had carpel tunnel surgery on both wrists + 2 falls fracturing my right wrist twice. All this time symptoms including chronic insomnia, constipation, hair loss, hearing loss, brittle nails, hoarse voice, the list is endless. In the end the fatigue felt as if my body was shutting down and the weight gain although I’d lost my appetite and wasn’t eating was worrying. My GP(who I had already lost confidence in) just said you are depressed and lonely and they thought my pain meds were the problem. I had to almost beg for a blood test as was told previous blood tests were fine( not sure of tests and to be honest felt too grotty to ask). When the results were phoned to me the Dr seemed surprised. I commenced levothyroxine 25mg. After a few weeks I felt no better, if not worse and the brain fog! I’m also downsizing my house and have bought a house( only one I viewed) and am finding it difficult to even get out of bed some days. I push myself to try to do things, but then feel awful. I have tried to do some research and wonder if I should have a full blood test privately. I’m at my wits end as I just can’t live my life feeling like the walking dead. On top of this I had to have 7 teeth extracted as they were just chipping off and got a dry socket which was excruciating pain for 2wks and my mouth is still sore. I’m thoroughly fed up of myself. I saw a different Dr who increased my levothyroxine to 50mg + another blood test. But I still don’t feel well but I’m told everything is okay. I feel like saying come and live in my body for a couple of days and then tell me I’m okay! Maybe I shouldn’t have but I stooped my omeprazole (I wasn’t advised about precautions taking that either) as I feel I’m not being taken seriously. Have other medical problems but rarely see the doctor unless I have to. Sorry this is so long but I have a lot going on! Any advice would be great as this journey of under active thyroid can feel very lonely at times when you aren’t taken seriously. Finding this forum has been great and given me hope that I will be able to get advice that will actually help me. Thanks for listening to my story.
Don’t know what to do next to feel human again! - Thyroid UK
Don’t know what to do next to feel human again!
Welcome to the forum and so very sorry for your loss
Grief and stress of moving house likely taking a toll.....thyroid disease is often exacerbated by stress
Do you know what your thyroid results were, before starting on levothyroxine and at most recent test?
Because you are over 65 it was correct to start on 25mcg levothyroxine as starter dose.....but dose still needs to increase SLOWLY upwards in 25mcg steps until TSH is always under 2. Often when adequately treated TSH will be well under one
How long have you been on 50mcg levothyroxine?
Which brand of levothyroxine are you currently taking
Is this same brand as when on 25mcg levothyroxine
Many people find different brands are not interchangeable
Bloods should be retested 6-8 weeks after EACH dose increase
50mcg is only a starter dose and you will need further increases
Carpel tunnel is common hypothyroid symptom and thyroid levels should have been tested when diagnosed with CT
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.
Ask GP to test vitamin levels and thyroid antibodies if not been tested yet
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test
Thriva also offer just vitamin testing
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
Also vitamin D available as separate test via MMH
Or alternative Vitamin D NHS postal kit
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
List of hypothyroid symptoms
thyroiduk.org/if-you-are-un...
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
Please add and test results if you have them.....or come back with new post once you get results
Hi SlowDragon. I’ve just phoned my surgery to get my blood tests results as you suggested. I really had to be pushy as they were reluctant to let me have them( they do not do an on- line service). Wanted to know why I wanted them, was it for personal use. I will get them if the Dr agrees! Apparently they have to be seen by the Dr first, then if she deems it okay I’ll receive printed copies. I’m really annoyed about the high handed attitude. Hopefully if Dr is willing to let me see my results( which I had to say was my legal right) should be about Wednesday when I’ll get back to you. Just pleased thanks to you I knew my rights before I called. Many thanks again.
They hate an informed patient
They are not allowed to ask why you want them....but just say “for my own record “
Yes GP has to look at them before you are allowed a copy
Ideally getting copies of test results from last few years....likely to see thyroid has been abnormal for some time ....if they had actually done any thyroid tests
If you are in England online access supposed to be available for all.
healthunlocked.com/thyroidu...
Wales and Scotland have different guidelines
Hi SlowDragon. Sorry I haven’t got back to you before now with my blood test results but some days it’s been really difficult to do much. But I was able to collect today. Surprisingly the surgery called this evening to book a further blood test on 25th feb at 11.20. I realise this is late to have it so will not eat, drink or take levothyroxine before the test.My serum free T4 level on 16/12/20 was 14.7. This was not repeated on my second test on 14/1/21.
My serum TSH level on 16/12/20 was 12.37(+). On 14/1/21 it was 4.78. Quite a reduction..
The only other test carried out was my cholesterol which I had asked for, which was slightly raised.
I have been feeling as if I’m on a rollercoaster physically and mentally. My insomnia is crippling me. For about a year I only get 1-3 hrs sleep a night, sometime none. I’ve told the Dr and asked for help but it seems to fall on deaf ears. I don’t know whether to wait and have the private blood tests, speak to a Dr and ask if they will do additional tests or do you recommend taking additional vitamins and minerals( for example magnesium to help sleep?).
I’ve bought a weighted blanket and a sad lamp to see if they would help. The blanket is very comforting and the with the sad lamp it is early days.
I would really value your advise and opinion on my blood test results. I will literally try/do nearly anything to “get back myself”. Hopefully relieve some of the symptoms I’m experiencing. I had an appointment at the orthopaedic dept last week about my replacement knees. For the first time in my life I had an anxiety attack in the x-ray dept. I’m also finding I get very emotional and cry a lot which can be embarrassing.
I realise I have a lot of things going on, particularly my house sale as I’m being pressured to move out by 31st March because of the stamp duty holiday. But I am a person who has had to cope with a lot through my life, and I do cope as I’ve always had to. That sounds awful writing it down, but I’m sure you’ll know what I mean .
I think the forum and the group members are wonderful. They have been so knowledgeable and supportive. From the day I found thyroid uk I haven’t felt so alone in coping with this condition. A big thank you to the people who got in touch with me. It meant so much at such a difficult time.
Looking forward to reply.
Kind regards. Sue.
Maybe I shouldn’t have but I stooped my omeprazole (I wasn’t advised about precautions taking that either) as I feel I’m not being taken seriously.
Good that you realise this likely making things worse.....low vitamin levels extremely common with any PPI
How long were you taking omeprazole?
Low stomach acid is an extremely common symptom when hypothyroid
Omeprazole is a PPI to treat high stomach acid.
Almost identical symptoms between low and high stomach acid, but totally different treatment
Very few medics understand the difference between the two
Thousands of posts on here about low stomach acid
healthunlocked.com/search/p...
Web links re low stomach acid and reflux and hypothyroidism
nutritionjersey.com/high-or...
articles.mercola.com/sites/...
thyroidpharmacist.com/artic...
stopthethyroidmadness.com/s...
healthygut.com/articles/3-t...
naturalendocrinesolutions.c...
Protect your teeth if using ACV with mother
healthunlocked.com/thyroidu...
Ppi tend to lower vitamin levels even further
Request testing of B12, folate, ferritin, vitamin D and magnesium
gov.uk/drug-safety-update/p...
webmd.com/heartburn-gerd/ne...
pharmacytimes.com/publicati...
PPI and increased risk T2 diabetes
gut.bmj.com/content/early/2...
Thank you so much for getting back to me so quickly. I’ve wanted to write but feeling so bad and overwhelmed if not slightly embarrassed having so many things physically wrong with me I just couldn’t write it all down, but I have now and so glad I did.My first diagnostic blood test was the 19th dec2020 and commenced 25 mg levothyroxine. I wasn’t feeling any better, if not worse so dose increased to 50mg on the 5th jan 2021, followed by a further blood test on 14th jan which I was informed was okay. I’ve since phoned my Dr as just feel so unwell and was told everything was normal and I should be fine. I was told I was being too hard on myself which really wasn’t that helpful.
I’m hoping to change surgery due to lack of confidence because of my husbands treatment and mine, even before this new diagnosis. But because of socially isolating and lockdown it has been too difficult.
I’ll attempt to get my blood results tomorrow and post them. I have to say a big thank you...just maybe I can actually get through this now as I feel you understand I’m not not alone anymore.
Sorry forgot to say, my first box of levothyroxine was teva and the second was mercurypharma. I never thought to check this. Would you recommend one brand against another or can’t you do that?
Starting on just 25mcg was correct because of your age, but starting on low dose often makes people feel very unwell
Levothyroxine doesn’t “top up” failing thyroid, it replaces it. So we need to get dose increased up as fast as tolerated
But you can’t rush hormones too fast
“dose increased to 50mg on the 5th jan 2021, followed by a further blood test on 14th jan which I was informed was okay.”
Bloods should be retested 6-8 weeks after each dose increase....so retest was too soon
So you may actually have preferred Teva
Generally many people don’t like/can’t tolerate Teva
But every person is different
Are you, or could you be, lactose intolerant?
But for some people (usually if lactose intolerant) Teva is by far the best option
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
Teva, Aristo and Glenmark are the only lactose free tablets
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but beware 25mcg Northstar is Teva
List of different brands available in U.K.
thyroiduk.org/medications-f...
Teva poll
healthunlocked.com/thyroidu...
Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change when dose is increased or at repeat prescription.
academic.oup.com/jcem/artic...
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
verywellhealth.com/best-tim...
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
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
my heart goes out to you, that is a heck of a lot to be dealing with all at once. I'm glad you have found your way here. it's a good place , and people can help.
Treating hypothyroidism takes months to get right again, and for a long while it feels like there is no end in sight , with no strength to get there, even if that is ALL you have going on.
With all the other things you are currently dealing with , it must feel impossible . but keep walking , you've got this far , and this place will help you get further.
The way Levo works, (which is not to top up , but to replace your thyroid hormone) means that 50mcg is probably not enough yet , it is more common to need something like 75 -125 when fully treated, but everyone is different.
In order to get any further , (if doctors are dismissive at this point and are saying 'your results are normal now, goodbye') is for you to get hold of your actual thyroid test results.
'Normal' is just not good enough where such an finely balanced thing as hormones are concerned, you need 'optimal for you'
There is a lot to understand about getting the best from thyroid treatment, and people here will advise you how to ask for your results, and help you understand what they mean. And what other things are needed to make sure replacement thyroid hormones work as well as they can.
But please be reassured , it will get better than it is now.
Dealing with pushing to get thyroid treated properly must seem 'just too much' when you've already got so many other things to be dealing with, and might seem overwhelming with information, but don't get disheartened,
While you are on just 25mcg , it is usual to feel worse than before you started, and even on 50 mcg you are quite likely to need a little more , and then need time for it to work properly, which is several weeks at least.
PS 'dry sockets' are horrendous, i've been there and wouldn't wish it on my worst enemy.
The thyroid result's you need to ask for are ;-
TSH( thyroid stimulating hormone) result AND lab range . ie. TSH 0.00 [ 0 - 0]
fT4 (free T4) result AND lab range.
fT3 (if they did it ,which they probably didn't)
plus ...
Any thyroid antibody results they have tested :-
TPOab (thyroid peroxidase antibodies) AND lab range. ie. 00 [< ?]
or possibly
TGab (thyroglobulin antibodies)
Oh my goodness! Why didn’t I post on the forum sooner! It’s like a breath of fresh air....I have just felt so rotten for so long and told basically it’s all in my mind and put on antidepressants and told to get a life! But how can you when you know something is wrong but just can’t twig it...now all my signs and symptoms make sense. I had carpel tunnel syndrome for over 4yrs and looking back now with classic symptoms. It took till last year to get the surgery when it had got to the stage I could hardly use my hands some days. Now I’ve got dupuytrens in both palms( haven’t bothered to tell Dr). But, hey.. it is, what it is and hearing you say things will get better is music to my ears. I was married for 44yrs and through ups and downs we were always there for each other. I think if he was still here I would have coped better than I have. Especially as I’ve been either socially isolating since February last year(my 1st carpel tunnel surgery) till lockdown now. My 25 yr old son lives with me. All I’m going to say is he’s a boy! I’ve coped with a lot in my life and usually carry on the best I can, but this has floored me completely and I’ve felt I’ve had nobody to talk to who would understand + I didn’t want to become a medical bore with the few people I was in contact with. I found the forum trying to do some research about 3am one of the many nights I can’t sleep these days. One again thank you for your help and support.
finding my way here ( after 17 years !! ~ bit of a luddite where the internet is concerned) and being able to hear from others with thyroid issues is really the best thing i've done for myself for years....
Imagine how much more helpful it would be if Doctors said , 'You've been diagnosed hypothyroid, which can have a huge effect on many many functions of your body, and also your mind..so instead of me making you feel like you're making a fuss over nothing, would you like to talk to other people who've had it for a while ?"Oh . there i go again ....,daydreaming about a world run by people with common sense 
You won't be surprised to hear that dupuytrens contracture is a hypothyroid associated thing too..... i can't remember without looking it up if it get's better on it's own with optimal thyroid treatment, but i'll be rash and bet you 50p it does.
Sound's like loads of fun with only one hand and 'a boy' to help around the house....
Hope they only did one hand at a time not both together....
Well thank goodness you have found this forum.....it’s a lifesaver for thousands of us
There’s over 115,000 members, by far the largest forum on Healthunlocked, in part because understanding and testing of thyroid disease is currently so poorly understood by many medics
It often takes years to get diagnosed ....you very likely been hypothyroid since well before carpal tunnel started
Despite levothyroxine being the 3rd most prescribed medication in U.K......many GP’s have little idea of how to read blood test results and treat patients.
There’s just under 2 million people in U.K. on levothyroxine, approx 9 out of 10 are female
It’s taken months/years to become increasingly hypothyroid, it’s frequently necessary to start on low dose and increase SLOWLY. Very common to feel pretty grim initially....but it does get better
Most people start to see improvements as dose is stepped up to 75mcg and then 100mcg daily
With the knowledge and resources on here, you can learn so much and things will definitely improve
First step is to get copies of your blood test results
See what has been tested.....and equally important what hasn’t been tested yet
Hi Carcrazy,
Please be kind to yourself!
Life is 'putting you through the mill' currently with the loss of your husband. Also having health issues and a house move all extremely stressful to deal with on their own!
The members of this forum are really helpful and will guide you with your thyroid problems.
I'm still trying to get a hypothyroidism diagnosis from my gp and I know how disheartening it is to be told 'it's all in your head' and to carry on taking the antidepressants. You almost start to doubt yourself in the end...
Even though you probably don't feel it most days, try to remind yourself how strong you are to be dealing with your grief, health issues and moving house all at the same time.
This may not work for you but when I'm feeling totally overwhelmed I break things down into manageable parts and work through them. For example getting out of bed when you feel unable to face the day could be one step...
Also as tattybogle has said it can take a long time to get thyroid issues right so that you start to feel like you are living and not just existing; I'm looking forward to that time myself.
Take care and be kind to yourself Carcrazy!
Welcome to the forum carcrazy. You will get lots of great advice & support from members. You have been through such a lot; I’m not surprised you feel overwhelmed. I just wanted to reassure you that you will feel better when your thyroid medication is increased. Equally important is focusing on key vitamins, so do get these tested and post all your results in the forum for advice. I’ve learned so much more here than from any medics I’ve seen. Best wishes to you!
Hi buddy195. I just wanted to say thank you for your kind wishes. Everybody has responded so quickly and the advice has been very welcome and positive. A great forum with lovely people going through the same experiences together. It’s been a horrible time but now I feel I might actually survive this situation.
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