Totally fed up!

Hi all,

I've been hypo for almost 4 years now after being diagnosed at the same time as losing my mum, literally within weeks! My levels have never been stable and the my GP either doesn't have much knowledge or just isn't interested.. I seem to have to remind them to do my yearly check and as a result my levo is either increased or decreased.

June last year I started to lose weight with no rhyme or reason. I have no family history of thyroid disease and do not have the common symptoms. In 6 months I dropped two dress sizes without any attempt to lose weight, I had friends and family saying I looked ill and extremely concerned.

After every blood test possible, in the words of the nurse 'you name it we're testing it' my bloods came back as thyroid normal, but ferritin and folate were rock bottom! GP put me on iron, folic acid and vitamin D and told me to come back after Christmas.

Since then, I am still constantly tired even after sleeping 8-9 hours, have sore eyes, my skin is terrible and sore, my hair dry, I have awful lower back pain which has since moved to my hips, stomach cramps which are like period pains, have come close to passing out on more than one occasion, my hands keep going numb during my sleep, I'm finding it difficult to stay motivated, I love to walk and honestly, if it wasn't for my dog I know I wouldn't be going out as by the time I get home I am shattered and in pain from my back and/or hips, just sitting in a meeting today for an hour I couldn't focus because the hip pain started.

I've had my bloods re-tested and had the results back today. Folate is normal but ferritin is still below normal, thyroid is normal, FBC etc all marked as normal but I have noticed that my lymphocyte count which is usually low is now high.

I'm completely at a loss.. the doctor has no explanations, she has even said she doesn't understand how I can be iron deficient because I'm not losing blood and eat extremely healthily. I had menstrual issues a couple of years ago and this is now managed by the pill but since this has begun my periods are painful and heavier than usual even with the pill (nowhere near as bad as it was!) I suffer with anxiety as it is and the pain and lack of answers is really getting me down. I'm only in my early 30s and feel like an old woman!

Has anyone else experienced anything similar? Could this all be linked to my thyroid?

Sorry for the mini essay I'm just totally fed up and hoping my fellow thyroid people may be able to give some advice!

C x

10 Replies

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  • You could be me, including the dog walking. Some days if not for her I would not go out. I have all your symptoms. I was diagnosed UAT 4+ years ago and put in 175 levo (starting low). All the docs say now my tsh is normal and ignore the symptoms. I've just had full thyroid bloods done privately. I discovered that I have hashimoto's ! Personally now I am moving to NDT, I read all I can, SSTM etc. I started my new regime this week, diet, supplements and have to believe I cannot get worse than I was.

  • I shall give you a link which may be helpful if self-medicating:-

    nebula.wsimg.com/e0c9c9ed95...

  • Many thanks Shaw's, day 3 and I feel really tired but realise I need to increase every 2 weeks until symptoms improve. I appear to be failing to convert on levo and hope I am going to do better on NDT. Should I supplement with t3 or wait and see?

  • Wait and see as many do fine on NDT and slow and gradual is best. I cannot find a link I posted a while ago about how to gradually build up to optimum. You then don't have the bother of sourcing two different hormones as the T3 in NDT might be sufficient for you.

  • First thing you have to understand is that there's no such thing as normal. You always need to know the exact numbers. And, if you post them on here, with the ranges, we'll be better abld to help you.

    Your doctor must be a bit dim if she doesn't realise that the most likely reason that your iron is low, is that you're not absorbing it well. Most hypos have low stomach acid, which means that they have problems digesting and absorbing nutrients.

  • A good start would be if you could post any results you have, the most recent if you can, and we can take it from there. The ranges are important as they differ from lab to lab and it's also important as to where in the ranges you are. Doctors often think being in range is fine but it isn't!

  • Hi all,

    Thanks for your comments, it's just so frustrating not getting any answers. As I type this I've woken twice last night due to back pain.

    My recent bloods are as below:

    Serum free T4 - 18pmol/L (10-22)

    Serum TSH level - 1.8 min/L (0.3-5.5)

    I've never really had the results explained to me and have trusted my GP so any help with understanding these would be fab x

  • Blood tests for thyroid hormones have to be at the earliest possible, fasting (you can drink water) and allow 24 hours between last dose of hormones and the test and take afterwards. If you've done this method that's good but if not the results could be skewed.

    Always get a print-out from the surgery of your results, with the ranges. Ranges are important as labs differ and it makes it easier to comment. TSH should be 1 or lower. FT3 and FT4 towards the top of the range, not middle or lower.

  • Vit D deficiency causes hip and lower back pain and lower leg pain as well as exhaustion. My very best wishes.

  • You need to check that your b12 levels are good if you're losing a lot of blood. B12 is needed to make red blood cells and keep nerves nice and healthy. When b12 levels drop, all hell breaks out in the body and symptoms (of fatigue, nerve pains, bone pains etc..) vary a lot from person to person (hard to diagnose) but anything less than 500 requires supplementation before neurological (nerve) damage becomes long-term. The Pernicious Anaemia society has a lot of easy to understand information and they're way ahead of where most GPs are with B12 deficiency symptoms and interpretation of tests. PA and Hashi's often go hand-in-hand I'm afraid...

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