Please can someone help me to understand if I am a hypochondriac or if I am undermedicated. I take 25mcg levo. Here are my symptoms
Heavy periods
Brain fog
Joint pain and tendonitis
Constipation
Tiredness
Puffy eyes and feet
Weight gain
Pins and needles
Feeling cold
Thank you
I was diagnosed in 2012. Recent results TSH 4.71, Free T4 12.4 (12 - 22) Free T3 4.2 (3.1 - 6.8)
Arty88 Good grief! You were diagnosed in 2012 and still only on 25mcg Levo??? What on earth is your GP playing at??? That is a starter dose for children, the elderly and people with heart problems. You could have been started on 50mcg, even more.
The aim of a treated hypo patient 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.
You haven't put the range for TSH but I'm guessing it could be over, if not then at the very top, your FT4 barely in range and FT3 very low. You most definitely need an increase of 25mcg immediately, re-test in 6-8 weeks, another dose increase, another re-test 6-8 weeks later, another increase, etc, until you reach your optimum dose for you to feel well. Tell your doctor you are a living, breathing human being with symptoms not a number on a computer screen. If he says you are in range tell him so what, you may be in range but you're not optimally medicated and it's causing you further problems that wouldn't occur if you were properly treated.
Ask for your vitamins and minerals to be tested as follows:
Vit D - joint pains can be caused by low Vit D
B12 - pins and needles are a sign of low B12
Folate
Ferritin - low ferritin can cause fatigue
Put your results in a new post and members can suggest supplements where any deficiencies are showing.
Thanks. Sorry range for TSH is 0.2 - 4.2. I was told to sort adrenals first then treat thyroid by a support group but they didn't look at my adrenal results so have remained on a low dose ever since. I have results for ferritin, folate, B12 and D.
Arty88 Did you do anything about your adrenals? Did you do a private 24 hour saliva test and show it to your GP? If so what was his reaction?
So your TSH is over range. I presume those results are from a private test with Blue Horizon?? Are you actually getting tests from your GP? Once stabilised after diagnosis and settling on a regular dose of Levo it's normal to test every year.
Post your Vit and Min results please.
Thanks, yes I did 2 private 24 hour adrenal stress tests. one of the thyroid support group members said they could interpret results of the adrenal stress test so I told them I had results saying I was in stage 3 adrenal fatigue and a retest in a month's time was recommended. The member's response was that I must be exhausted. So I went ahead with the retest though later than planned due to financial trouble but again was unable to get analysis regarding the repeat test. I mentioned to the same group member my cortisol had gone the other way but again no answers or analysis. The GP does not know I have done the adrenal tests because I was told at the support meeting doctors don't understand adrenal stuff. I will post vitamin and mineral results in another post.
Was this thyroid support group online or did you go to meetings? Why was there no follow up with the second adrenal test? Who said it was stage 3 adrenal fatigue - the comments from Genova (I presume the test was through them if you're in the UK) or the support group? What were the recommendations for dealing with your adrenal problem?
They were right about doctors not understanding about the saliva test.
It was a Thyroid UK support meeting. Genova told me I had stage 3 adrenal fatigue. They recommended diet and lifestyle changes. Genova gave me no information at all about the repeat results like they had done with the first set.
Did you take any supplements for your adrenals? There are many links to websites which discuss adrenal fatigue, including the different stages, and it would be worth you looking into this. I can't suggest anything as my adrenal problem was not severe, just low adrenal reserve which is being dealt with by adaptogenic herbs.
I think that because Genova now require tests to be done through a 'practioner', they just give the results and it's up to the practioner to interpret them.
Thanks I appreciate your advice about this. The only thing I have tried are vitamin C fizzy tablets but they made my stomach feel heavy. I will need to do some homework regarding this.
Vit C is good for supporting adrenals. Those fizzy tablets contain a lot of unwanted rubbish. You might not be able to tolerate ascorbic acid so you could look for magnesium ascorbate form of Vit C which shouldn't upset your tummy, it's more expensive though.
As you have been so let down by your doctors, you need to help yourself now. Read and learn, when you have a good understanding about hypothyroidism you will be able to discuss things with your doctors in a more confident way and push for being optimally treated. It might be an idea to get this book by Dr Peatfield amazon.co.uk/Your-Thyroid-H... . It explains all about the thyroid, also adrenals, and is written with the patient in mind so not too technical.
You have been very helpful, thank you. I speak to my GP tomorrow and I will ask about an urgent endo referral then.
Arty88 may I ask is your doctor refusing to raise your levo dose? Or have you deliberately put a pin in it while you get the adrenal thing underway?
If all you want is an increase in levo (which I agree you need) and the adrenals will be kept separate for you to deal w yourself, I have often seen on this forum that the gp is a more expedient route than the endo. In my experience one needs an endo when there is cancer or some rare issue only they can figure out but tbh when it comes to uat they are frequently unhelpful. (If yours is different pls disregard my comments.)
I'm just thinking if it is just a matter of having a chat w the gp and getting a script, that may be the cheap and cheerful way to go. 
Thyroid tests are getting done through my endo.
Well, if your endo is happy with those results then he is a total fool. Are you due to see him again? You need to challenge him and ask why you've been left on a starter dose of Levo and why is it acceptable for your TSH to be over range.
What are your vitamin and mineral results?
Thanks, I saw him in August and he said he will see me in December. He has now moved the appointment to January next year. Vitamin and mineral results are on another post.
You need to talk to your GP, you can't continue any longer with such a ridiculously low dose of Levo and all those symptoms. Tell him you need an urgent appointment with the endo and that you can't wait until January, or will he increase your Levo himself. If he won't increase your dose on those results then ask for a referral to another endo who will actually treat you.
Email louise.roberts@thyroiduk.org.uk and ask for the list of thyroid friendly endos.
It is scandalous and your doctor could have caused your more ill-health by such a low dose. The fact is they know little about detection and/or treatment to an optimum level.
They only look at the TSH and if it's somewhere within the range even the top, the do nothing. The patient complains and is given 'other' meds for the symptom rather than an optimum of levo. TSH should be around 1.
Tell your GP you have taken advice of the NHS Choices forum for the thyroid gland (Thyroiduk.org.uk) and have been advised to have a Full Thyroid Function Test, TSH, T4, T3, Free T3 and Free T4 and thyroid antibodies (you haven't had antibodies taken before). Also B12, Vit D, iron, ferritin and folate.
Blood test should be the earliest possible and fasting (you can drink water). Allow 24 hours between your last dose of hormone and the test and take it afterwards.
Get a copy of the results and post for comments.
My gut feeling about telling people w uat to 'sort your adrenals first' is that when you're in a terrible state of uat exhaustion you really need to be on a good dose of levo and then see where you are. Sometimes even w the best intentions this kind of thing can encourage someone to delay treatment that they just can't organise such is their inexperience and the severity of their illness.
Levo is not of course for everyone - there is a faction of folk who will never improve at all on it - but trying it properly, at a decent dose, is better than getting so stuck that you end up on 25mcg levo for four years. The adrenals thing ('bad adrenals means you'll never get well on levo' etc) is more of a theory for people who don't get well on levo, not a reason not to try it at all.
I really feel for you. I recall vividly how overwhelming and confusing it was when I got my diagnosis, and I cannot overstate how exhausted and robot-like I felt, and then I dithered for a year trying other stuff - Chinese meds mainly - to see if I could kick-start my thyroid. I was on the floor by the time I went crawling back to my gp for more meds, and by then my tsh had gone down and I had to fight to get my levo script back.
You just need to start doing something to help yourself - a good dose of levo seems the easiest, and you will most likely want to try it before anything else to see if/how it helps - and from there you'll be in a better position to sort your adrenals and nutrients and do whatever else helps you regain your health.
For many people the uat story is blessedly short: I got ill and/or off-kilter test results, I took levo, the dose was tweaked and I felt better, the end. This could be you! Your adrenals will still be there if the levo doesn't work.
Good luck!
Detta verkar vara en underfunktion, helt klart, du bör nog höja din medicinering
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