still feeling exhausted

Hi I am new to this site and find it really informative. i was wondering if any body could shed some light on why I still feel rubbish since being diagnosed in 2013 with hypothyroidism. I have been unable to work since sep 2014 as I am constantly exhausted with lck of concentration and foggy brain. My legs are constantly aching and feel like I am trying to walk through water. I can't walk for long distances as my legs feel weak. All my muscles ache and i have weakness in my arms when trying to perform basic tasks. My thyroid Dr says my results are normal and she doesn't know what is wrong with me. I was referred to a rheumatologist with ? fibromyalgia but she wasn't convinced it was that and said it was probably my thyroid. I appear to have lost faith in all Drs and feel like no one can be bothered to find out what is wrong with me. my last blood tests were in aug 2014 and I have posted the results below. I was originally on levothyroxine 100mgs daily but my consultant dropped it to 75mgs daily as she said I was running a bit high. I haven't felt well since it was reduced but they refuse to put me on more as they say I am normal. please can anyone give me some advice.

tsh 0.75 (0.30-6.00)

free T4 16.9 (10.4-24.5)

free T3 3.8 (3.0-7.1)

thyroid peroxidase antibodies 592 (0-35)

I also take vitD supplements as I am deficient.


15 Replies

  • Well your antibodies are high so you have Hashimotos. Your T3 is only just in range. A lot of people do not feel well until their T3 is in the upper quarter of the range so it looks as though you are now undermedicated. What a shame your meds were reduced when they were working ok :(

    There is a real problem with health professionals only treating by blood tests and ranges. They should treat until the symptoms are no longer present.

  • Thanks for the reply no one mentioned hashimotos before. i definately have been worse since they reduced my dose. i am going to pay and see a thyroid specialist now and hopefully she will be able to help.

  • Welcome caladiva - How long have you been taking Vit D supplements? what level were you?

    I took 4000iu daily and found relief after about 3 months, shin pain and muscle aches which got worse to start with. I think I'm low again as lead legs after a few minutes walking (on flat ground!)

    Both your FT4 & FT3 are still in low range, esp FT3 which could be something more is needed to help you convert T4 to T3 - best check irons, ferritin, folate & B12 - they're often low like Vit D. There's others needed in the mix too, B complex, Magnesium, K2, Selenium .... etc

    A blood draw should be first thing & don't take levo beforehand as it creates a false higher reading.

    Cutting out wheat (or even going gluten free) can help calm down those antibodies - so I'm informed anyway. Best wishes Jane :D

  • thankyou for your help my vit d level was only 5. after 2weeks high dosage i am now on 40000 units amonth.

  • Wow that's low (at nmol/l or ng/ml x2.5) 10,000iu a week? (1428 daily). I hope you will feel improvements soon :)

    1) Sufferers say TSH ceases to be a correct measure when taking Thyroid hormone

    2) we think TSH is pretty rubbish anyway, flawed as a pituitary response - not thyroid

    3) A better TSH test was ignored

    3) TSH varies throughout the day anyway according to circadian rhythm

    4) measures may well be called 'exquisite' but don't make sense - I had 4+ years of 'in range & felt awful' - diagnosed on a number, TSH of 19.75 - when I didn't feel that bad!

    5) GPs have to treat by 'evidence', observation signs/symptoms not enough anymore.

    6) They don't understand FT4, FT3 - the latter is the actual useable thyroid hormone

    75 mcg treatment may well be too low (e.g. vets go by weight!) but you can start by sorting out any vitamin/mineral deficiencies yourself to feel better. J :D

  • I think you are being neglected. You have very high antibodies so you have autoimmune thyroid disease called - Hashimoto's. Doctors have no right reducing your dose according to your TSH result. Unfortunately it's what they've been told is the right thing to do but we, who are on the other end of this decision suffer. Your clinical symptoms are very painful and I can understand completely the pain. Nowadays they have no knowledge of clinical symptoms nor haven't a clue how metabolism is affected when the thyroid gland is dysfunctional.

    Your Free T3 is too low, your antibodies too high. When you next see your doctor/endo tell her she has put your health at risk by keeping your TSH within range instead of considering your clinical symptoms as they should be the priority not the whereabouts of a Pituitary Hormone.Too low a dose can cause you serious problems if not rectified, ie. heart, etc.

    Some links but email and ask for a copy of Dr Toft's Pulse online article (he was President of the British Thyroid Association) and discuss upping your dose to bring your TSH down to 1 or below or suppressed. I don't know why we have to become 'experts' to recover our health when others 'trained' don't understand.

    Please ask for some T3 to be added to your T4 (she'll probably quake with fear at such a suggestion) but you are obviously not converting T4 to sufficient. Do they know that it is T3 which is the Active hormone that drives our metabolism? It seems not.

  • thankyou so much for your help I will ask when I see thyroid specialist next week. i am having to pay to see one privately as the nhs one discharged me I think she thought I was just a hypochondriac but i am losing my job over this as I am so unwell.

  • I am very sorry you have had extra pressures because you are unwell. Did you get the name of a sympathetic specialist from a recommendation or If not, email for a list. We pay sometimes to see a person whom we hope will be helpful but find out after spending money that it was a waste of time. I hope you don't find this and get someone who is helpful.

  • I'm seeing a Dr Mukherjee at Manchester apparently she specialises in thyroid so fingers crossed.

  • You say that you haven't felt well since your Levo was dropped to 75. My hypothesis is that you're undertreated and will start to improve if you go back to 100mcg - you can easily test my hypothesis :)

  • If you get no joy with Dr Mukherjee I can highly recommend a Professor of Endo who practices in London. He prescribed me NDT having checked all the various vit levels plus oestrogen etc and it's been just right. Not sure whether we're supposed to put names on here but he's incredibly sympathetic, has a lot of experience and doesn't just pat you on the hand and tell you that you're imagining your symptoms (which is what an NHS endo basically did to me!). I've raved elsewhere about how NDT has finally made me feel 35 again rather than the 70 I felt on Levo (I'm 49!)

    While going private isn't cheap once you get a set of full prescriptions privately, try and get it agreed by an NHS endo as I get private prescriptions for NDT from my NHS GP because the NHS endo signed off on the Prof's prescription (although I can't the prescription filled on the NHS it has to be private) but this cuts down on the cost quite a lot. The private prescription for NDT costs (for me) around £35/month.

    It's a long road to travel and they do say you take a year from diagnosis to feeling reasonable. I'd agree as long as that year also includes for being prescribed NDT!

  • Please can I have the name of your Endo in london? Having no luck with our GP or our local Endo for me and my daughters but could travel to London. Thank you.

  • Hi Tupenny Rush.

    Please could you also privately message me the name of your Consultant in London?

    Thanks in advance.


  • Hello TuppenyRush. Could you please pm me the name if your endo in London? Sounds very sympathetic. Thanks

  • Hi both

    I've DM'd you with his secretary's details. Good luck!


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