Diagnosed late 2015, really tired, very depressed, cold, suddenly overweight. etc.
Levothyroxine given, bloods tested ev 3 months, until, I was told it is at the recommended level.
Have been at "normal" levels for approx 9 months - when I was told, I was like "no, I am not back to myself".
I have been to the Docs 6 times in 2017 . Having only ever 0-2 times each year previously - broken bones usually - from my active life. I keep going back and saying I don't feel like "me" still.
I have almost given up with the Docs; last time I went, I was met with aggression from the Doctor, "What do you want me to do about it?". Left with a depression card and a phone number.
I work. This has almost cost me my job, my marriage, my relationships with my children. I even tried to leave my wife - she has been so strong despite being equally scared of what I am becoming.
I am crying at my PC now and feel I am about to forget who I was. I have never had self doubt in my life, now I don't know what the next hour will hold for me. Challenges used to be fun; I am scared, timid and depressed; not like I used to be. The fun has gone from life. I cannot concentrate, focus, etc. Being happy is always acting; nothing makes me feel any better. No longer want to do the things I once loved or satisfied me, plus I feel so cold, most of the time.
I only have one question, what are the s3lf medicating ("liothyron1ne"?) options. Whatever it costs a month, I don't care - cheaper than losing my wife and home. I just need to feel normal again.
*please PM me if this is not allowed in public*
I am on Levothyroxine 150Mg daily (no food etc, also tried diets), also on phenytoin sodium for epilepsy (400mg daily) - no seizures for last 20 years.
PS: I just watched the woman in the BBC interview and it made me feel like she knows the self I am missing: bbc.co.uk/news/av/health-42...
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CheeseSolvesItAll
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Hello Rockbottom, hang in there sweetie - I'm sure someone will message you with some ideas - meanwhile please post your latest blood test results for folk to help - and have you had vital minerals tested too? - Levo just won't work properly if you have deficiencies.
Apologies I'm just off out - but just wanted to reply ((hugs)) Jane
I think I had it all tested. Cannot access any results online, Docs has only let me see them, no copies for me. Thank you -trying for a Marathon, but wanting a sprint.
Here in the UK we are legally entitled to our results. Ask at the reception desk, not the doctor, for a print out. Don't accept anything verbal or hand written.
If you want to you can put in a Subject Access Request for your records but that will cost up to £50 I believe
Don't despair. You have come to a place where we all understand what you are going through.
First things first.
What are you test results? Please post them, with reference ranges, so we can see what your doctor thinks is normal (usually that means anywhere on range) and whether it is, in fact, optimal.
Don't even think about T3 (liothyronine) at the moment. We have to see what your results are like and see whether you are converting T4 to T3. So ideally we need
TSH
FT4
FT3
Thyroid antibodies - Thyroid Peroxidase and Thyroglobulin
Vit D
B12
Folate
Ferritin
If you haven't got all those, ask your GP or get them done with a private fingerprick test from
'Normal' is a very broad range. If you post your recent thyroid results and ranges we'll advise whether you are optimally dosed on 150mcg Levothyroxine. If you have any results for ferritin, vitamin D, B12 and folate please post them too.
Sorry, have not been able to concentrate for so long, it has become the norm; also [used to] trust my Doctor to do what is needed, so no copies. Have paid for Medichecks to test them all; will post back when I know more.
If you read people's profiles, you'll see thyroid treatment is not something you can trust a GP or endo to get correct
Low vitamin levels are extremely common, especially if you have Hashimoto's (high antibodies)
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, 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 articles from Thyroid UK email dionne.fulcher@thyroidUK.org. print it and highlight question 6 to show your doctor.
Prof Toft, recently got of the fence and spoken out - article just published
You are lucky, please do see it like that. You now live in an internet age. I felt like yourself for 15 years non stop from 1993 until 2008. I was ill every day with no let up in symptoms. I had depression apparently, but the tablet only made me feel a little better with being so ill.
Thanks to the internet i started to read about thyroid and i trialled some hormones on my own. I got much better, but not fully well. Slowly i have regained my health, but it is not a simple and easy journey.
So take it you will get much better, but it may take some good time.
The issues when jumping on thyroid replacement are much more complex than getting the TSH marker balanced.
You will have lower adrenal function, vitamins and minerals will be low, you may also have an auto immune form of the illness, so diet will need to be considered.
As mentioned by others, get some blood tests done or get the results from the doc.
Aim to get the FT4 in the high teens. IF you are still not doing well with T4 any higher it is likely you will need some T3 supplementation.
If using the T3 always start low because it maybe you are one of the people needing only a small top up dose. Many forums say start low, but they still end up recommending too much. A good start dose is 1/8th of 25mcg tablet = 3mcg approx. If we could buy 1mcg tablets this would be the best dose to start on.
Look at taking the T4 at bedtime (and some T3 if you end up taking it) because this will fit better with your natural production of thyroid. It then has the knock on effect of naturally boosting cortisol levels for the next day. So you won't need to take adrenal boosting tablets.
So don't give up hope, get reading and make sure you start monitoring your vital signs from now. This is HR, BP, temperature. Keep a diary and this data will help guide you towards the correct balance for your body.
Finally only make one change in terms of anything you take at a time. Don't change the T4 and add T3 at the same time. Or add a vitamin and change your thyroid meds at the same time. You want to make an addition or an increase or a decrease on there own and give it a few weeks to work through the body. This way you can assess what is doing what.
Hence this is not a quick fix, but if you want to have a better life for the next 30 years it is worth doing properly.
I agree it could be also be low nutrients or adrenal/low cortisol which can cause all the symptoms described. You could ask GP for 9am blood test for cortisol (uk ref range based on 9am value).
Look into the Paleo Autoimmune Diet which addresses hidden food intolerances thereby giving your body a rest and an opportunity to heal:
My daughter was very ill with depression, chronic fatigue, freezing cold and all other symptoms you describe. Turned out it was low cortisol. With this diet, rest and relaxation she has made amazing progress and has reintroduced most foods (except gluten) now. There is so much to try, hang in there x
Feeling tired weight gain aching joints muscles etc 1 year ago diagnosed with hashimotos 47 year old male on 175 levothyroxine feel like its not doing anything tsh is now at 2.8 feel emotional same crying etc
I was a kinda blokey bloke before this 1 year ago it sux wifey kinda understands and is supportive i just want to get back to how i was its horrible im under an endo and its not really getting any better
I am not at all well at the moment, don't have the energy or brain power to give an in depth reply.
I would make a new thread with these results and link back to this thread for background info.
I will tag SlowDragon because you have Hashimoto's and she knows so much about that. You have some low nutrient levels which will be linked to the Hashi's no doubt. Maybe even Nanaedake is around and I'm sure they, and others, will reply with helpful answers for you.
THYROID STIMULATING HORMONE 2.02 mIU/L 0.27 - 4.20 THS is a little high for someone on thyroid hormone diagnosed with a thyroid condition. Most people don't feel well until their TSH is 1 or a little lower so there is room to increase your levothyroxine dose.
FREE THYROXINE 19.6 pmol/L 12.00 - 22.00
This looks good but don't worry if it goes slightly over range with a dose increase.
FREE T3 4.72 pmol/L 3.10 - 6.80 Your FT3 is a little on the low side so a small dose increase shouldn't take it over range. You could increase levothyrxoine by 25mcg and retest in 6 weeks to check FT3 stays in range. It's best in the top third of the range. It's the FT3 level being low that tends to give us symptoms.
These antibodies show that you have autoimmune thyroid disease otherwise known as Hashimotos. With Hashimotos, thyroid hormone levels are apt to fluctuate. There is a lot more information about this on Thyroid UK website.
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, 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 articles from Thyroid UK email print it and highlight question 6 to show your doctor please email Dionne: tukadmin@thyroiduk.org
Prof Toft - article just published now saying T3 is likely essential for many
Professor Toft - Counterblast to Thyroid Guidelines
25 OH VITAMIN D 53.8 nmol/L 50.00 - 200.00 Your vitamin D level could be better. You need to aim for mid-range or about 100nmol. YOur GP is unlikely to offer supplements as you are in the sufficient range although right at the bottom. You could take 1,500iu daily for 3 months and retest in March. It's important not to over-supplement as vitamin D is stored in your body. You may not need to supplement over the summer months as you may get enough sun exposure.
ACTIVE B12 138.2 pmol/L 25.10 - 165.00
B12 is best at the top of the range. You could supplement with a good B complex with the methylated forms of vitamin B. I take Thorn Basic B. That will also raise your folic acid level too and keep all the B's in balance. Supplement for a few months and then retest.
All the vitamins and thyroid hormone work together. I would optimise all of these before adding in T3. It's getting increasingly harder to get if you live in the UK and you may find this is enough to get you back on your feet.
Have you tried a strickly gluten free diet? A vaguely gluten free diet is no good, it has to be total. SlowDragon has links and best advice on gut function.
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Trying to help myself with vitamins.
Feeling sorry for myself 
My first post about myself
Getting myself in a hell of a muddle!
