I was diagnosed as hypothyroid over 2 years ago and have been on 25mcg of Levothyroxine ever since with annual tests that have come back as 'satisfactory'. The only info I was given was that it was 'good news' as I would get free prescriptions as I have a lifelong medical condition! I am now scrabbling around for advice to best live with this. I wake up most nights drenched in sweat, I struggle to find words sometimes and have brain fog which really scares me as I have a 7 year old to look after. I just seem to have no drive and have gained quite a lot of weight. My partner and family don't understand and think now I'm on tablets for this there should be no problem...I have stopped taking multivits and other 'cheap' vitamins as have read some posts to say this is a waste of time and could be dangerous. I have also read that I should give up gluten/dairy/grains/nightshade vegetables and I'm wondering what I can eat! My patronising GP just thinks everything is down to my age (53) as the thyroid is being treated and is only concerned as my cholesterol is creeping up. Feel like a lone voice in the dark - I will post my latest results if you're still there!
Feel like I have no quality of life anymore. - Thyroid UK
Feel like I have no quality of life anymore.
Hi, I'm so sorry you feel so awful and sorry that your doctor has treated you so badly 
I suggest that you go back, maybe armed with some info from ThyroidUK website and demand an increase in medication and/or a referral to an endocrinologist. 25mcg is a starter dose and you shouldn't be left on it. I would also ask that he tests your vitamin D, Ferritin, Folate and b12 levels as we are often deficient in all of them. Failing that, order a private testing kit from Blue Horizon or medichecks.
Re' cutting out foods, I wouldn't cut anything out until you have been tested for antibodies. If those are raised then going gluten free may help..possibly dairy free too although I would be careful about cutting out any major food group without good reason. I myself have gone gluten free and it has helped but I eat everything else (except Soya).
High cholesterol is linked to undertreated hypothyroidism!!!
Thanks for your reply - have put vitamin tests below - asked for a referral to Endocrinologist and was told they can't do that and there was no need as my thyroid was satisfactory. I thought that was the case re cholesterol though I have gained weight and have a family history of it so even more important to get Thyroid treated properly!
You're probably better off without an endo! They don't know much about thyroid, as a general rule. They all seem to specialise in diabetes, and often make thyroid problems worse!
You have to be able to rely on you! So, you've got to learn as much as you can about your disease, so that you can argue intelligently with your GP. 
Test results -
TSH level 2.08 Range 0.27 - 4.20mIU/L
Vit D 63 nmol No range given
Folate 11.8 Range 2.50 - 19.50ug/L
Ferritin 74 Range 30.00 - 470.00ug/L
Vit B12 481 Range 180 - 900ng/L
Had Liver function/full blood count/electrolytes/HBA1c too but all were also 'satisfactory'
T3 test?? Most people feel better with a TSH below 1 but I can see why your doctor is saying it's fine because they just arent clued up enough unfortunately. I would persist in trying to get an increase but if not then I'm afraid you may end up self medicating as so many of us do I don't know what to say to be honest, I never had this problem as my TSH was so high (I've still had to self medicate as levo didn't work for me anyway) but I'm sure others will be along who have had similar experiences and may be able to offer a different solution x
1dolly Oh dear, another ignorant doctor where hypothyroidism is concerned, happy to leave a patient so unwell they can barely function
TSH level 2.08 Range 0.27 - 4.20mIU/L
Is this all that was tested? No FT4? This is becoming increasingly common "Just test TSH, if it's anywhere within range then the patient is absolutely fine and if they say otherwise they're either making it up or they have a mental illness" !!!! Doctors all seem to be slaves to the TSH but they really don't understand how to treat hypothyroidism.
After your initial diagnosis and prescription for 25mcg Levo, you should have had 6-8 weekly testing with increases of 25mcg until your symptoms abated and you felt well. This is standard stuff that your GP should know if he bothered to check.
The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo.
So you need an immediate increase in your Levo, followed by the normal retest/increase protocol every 6-8 weeks. In support of this, please see thyroiduk.org.uk/tuk/about_... > Treatment Options:
According to the BMA's booklet, "Understanding Thyroid Disorders", many people do not feel well unless their levels are at the bottom of the TSH range or below and at the top of the FT4 range or a little above.
The booklet is written by Dr Anthony Toft, past president of the British Thyroid Association and leading endocrinologist. It's published by the British Medical Association for patients. Avalable on Amazon and from pharmacies for £4.95 and might be worth buying to highlight the appropriate part and show your doctor.
Also -
Dr Toft states in Pulse Magazine, "The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the article by emailing louise.roberts@thyroiduk.org print it and highlight question 6 to show your doctor.
**
Vit D 63 nmol No range given
This is sub-optimal. The replete range is 75-200 and the Vit D Council recommend a level of 100-150nmol/L. You could do with supplementing with some D3 and it's cofactors vitamindcouncil.org/about-v...
D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.
Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds
naturalnews.com/046401_magn...
Check out the other cofactors too.
You can either buy separate D3 and K2-MK7 or you can buy a combination supplement. A good D3 is Doctors Best softgels (contains only two ingredients, one of which is olive oil which will help absorption of the D3) and a good separate K2-Mk7 is Healthy Origins, again minimal ingredients. I would suggest 3000-4000iu D3 daily for 3 months then retest. Once you've reached the recommended level then you can reduce to a maintenance dose which may be 2000iu daily, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with City Assays vitamindtest.org.uk/
**
Vit B12 481 Range 180 - 900ng/L
Folate 11.8 Range 2.50 - 19.50ug/L
These work together. Your B12 is on the low side and your folate is just right as it should be at least half way through it's range.
An extract from the book, "Could it be B12?" by Sally M. Pacholok:
"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".
"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."
Sublingual methylcobalamin lozenges are what's needed if you wish to self supplement, and 1000mcg daily will be fine, along with a good quality B Complex to balance all the B vitamins.
**
Ferritin 74 Range 30.00 - 470.00ug/L
For thyroid hormone to work ferritin needs to be at least 70, so you're just about there, but preferably it should be nearer half way through range. You can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, and including lots of iron rich foods in your diet apjcn.nhri.org.tw/server/in...
Thank you so much for all this - it is just what I needed. I was hoping you would reply SeasideSusie as you are so very knowledgeable and a gift to this site. I now have some ammunition to take to the GP and I will get the supplements you suggested. I am not keen on liver so may have to pass on that! Such a shame we have to root around to find help as the NHS are so useless - thanks again I feel much more hopeful now.
How about Liver pate or hide minced liver in chilli or bolognese or shepherds pie
As well as getting vitamins optimal as per Seasidesusie's excellent advice AND going strictly gluten free - you should really notice an improvement
Also
All thyroid tests should be done as early as possible in morning and fasting and if taking Levo don't take it in the 24 hours prior to test, delay and take straight after. This gives highest TSH and will help get you necessary dose increases
Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take on waking, but it may be more convenient and possibly more effective taken at bedtime
verywell.com/should-i-take-...
Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Thanks for that. I did try taking my Levothyrixine in the evening and it was better in some ways but I found by the afternoon, I had real trouble staying awake. Mind you this could also be because I am on the wrong doseage in the first place!
I remember how bad I felt at the beginning, without any support from doctor, as I was in what is considered the normal range with a low starter dosage. I felt in despair as the doctor just brushed how I felt aside, and in fact told me it was my age. Well maybe the hot sweats were, but the rest of it wasnt! Luckily, I had a friend whose mother was a nurse, and my friend had been diagnosed as hypothyroid from the age of 9 so she had coped with this all of her life. And from a very young age, her mother had had to adjust her dosage. My friend told me to increase my daily dose by 25mg and see how I felt. If there were no adverse effects, I either stayed on that level of dosage, or after a month, I increased a further 25mg daily. I kept doing that until I felt 'normal' for me. And although the process was quite slow, I ended up on 225 mg daily, all with the normal periodic blood tests coming back as normal. At some point I told my doctor what I was doing, and he said it was fine, as 25mg is a small change in dosage and staggered slowly. I then proceeded to take the 225mg for about ten years without any problems, and doctor says the dosage is spot on. So my advice is increase by 25 mg, and after a month, if no problems, and you still feel lacklustre, increase another 25. As and when your bloods come up for review, confess your increase, so you can get your prescription adjusted accordingly. And I would also change my doctor!! If you do not feel well, and for such a long period, then he/she, should be investigating the cause, not brushing it under the carpet. 25mg is a ridiculously low dosage. I have never heard of anyone starting on less than 50mg. I can't see that it would make any difference whatsoever.
I'm not sure I'm brave enough to increase my own dosage but it is something to bear in mind and it worked for you. I am going to change my doctor and I have lots of great ammunition and support behind me now, thanks.
I did feel apprehensive when my friend first suggested it, but as I felt like the walking dead, as things were, I eventually thought it worth a try. But I do hope you feel better soon. Change that doctor, and say that your hypothyroid friends have said suggested you increase it so ask if can you try it. I think they will let you. One other thing to mention is pottasium. Have they checked your potassium levels? it is very important and if low, can make you feel really poor ie no energy, concentration, aches and pains etc.
Sounds as if you have a problem with a GP. He is not listening and ignoring you,
Suggest you go to another doctor on the panel, and explain your symptoms. The symptoms have to be the first guideline to your medical condition, so should be ree-valuated by some one who
will review your medication. They should do a 6 monthly check at least on your drugs so it sounds as if you need to go back as soon as possible to another doctor.
If you get no satisfaction and review, then go to your local chemists drop in for minor ailments
and explain your symptoms Lloyds have drop in ask questions as do NHS pharnacies and others such as Rowlands and Boots. They will refer you back to your practice, and the doctor will have to review you if they recommend your dose is too low. Pharmacists know just as much about drugs such as levothyroxine and may be more than the GP - so it will help your confidence if you have free advice from drop in minor ailments clinic. Take care.
Thanks, I didn't think of talking to Pharmacists, that's a good idea.
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