Endo disappointment!!

Seen Endo at local hospital last Wednesday, much to my upset I didn't get the one I requested to see from Louise Warvill's list, so I think that Dr A that I did see was a little annoyed with me from the start. Had Graves disease diagnosed in 2008 by Dr A and he treated me with stop and replace for 18 months. Then all treatment removed. Battled with my GP for last 3 years to get to see an Endo again because my TSH has been repeatedly high at 3.3 - 3.9 (range 0.35-4.5), and I have been feeling awful, joint ache, tiredness, hair loss, weight gain, low vitamin D, brain fog, no periods and then very heavy 3 week ones etc... Now Dr A last week was ready to push me out the door before I even sat down. Said all my symptoms were to do with my age and nothing else, he looked at previous blood tests and said all is OK and within range. To cut a long story short, he said he would to a blood test for my for my Thyroxine level and that's all, I think he just said that to get rid of me, anyway I have now this morning received on a scrap of paper from my hospital. Thyroid Stimulating 3.5 Free Thyroxine 17.2 Normal results

Can any one please tell me what this means!! Is it normal??

I am off to Rheumatology Department today, for another 2nd opinion on that side of things. Why do I feel so ill if I keep repeatedly get told nothing is wrong with me??

Please help and sorry for the rant x

8 Replies

  • Gillpop, TSH 3.5 is high enough for people to feel symptomatic but FT4 17.2 looks reasonably good.

    Hypothyroid symptoms can precede abnormal bloods by years but I don't think you will get a diagnosis until your TSH is over 4.5. It's a pity your doctors are adhering so rigidly to protocols instead of trialling Levothyroxine to see whether it helps with symptoms.

  • Thanks for reply Clutter. With a useless visit to Rheumy today I am beginning to think maybe to self dose with NDT, but have no idea where to start really. Any suggestions?

  • Gillypop, post a question asking for recommendations where to source NDT but ask for replies to be via private messages. NatureThroid and WP are generally less expensive than Armour. Thyroid-S is probably cheapest of all. Not all brands suit everyone so don't buy in bulk until you are happy with the brand you choose.

    Probably best to buy 1 grain doses (60 or 65mg) as NDT should be started at half a grain (half a one grain tablet) for 2 weeks. Increases can be in half grain increments every two weeks until your symptoms resolve or you are on 2 grains. Hold at 2 grains for 4 weeks and have a thyroid blood test before increasing. You can order private thyroid blood tests from Blue Horizon and Genova via thyroiduk.org.uk/tuk/testin...

  • Thanks Clutter, all sounds good to me. I love this site, so many knowledgeable and really nice people. x

  • The TSH is a bit too high for comfort, so that probably means that your FT3 is low, even if your FT4 is good - although difficult to tell without the range. But low FT3 means you're hypo.

    They tell you there is nothing wrong with you because they have no idea what's wrong with you! Dr A obviously knows very little about thyroid. Self-treating might be the only way to go - unless you want to wait and suffer on the off-chance that your TSH might get higher.

  • Thanks Greygoose. Yes that's my worry getting any worse!! I really have been quite naïve about Thyroid and my condition. This site is a godsend, but as for self treating it sounds the best option, but I am very worried about the blood test side of things and being able to afford paying for them myself seeing I have no support from my Dr. I really can't warrant £100 every few months. Its all so frustrating.

  • £100 for the blood tests? Maybe you only need to do them once a year. It's been over a year since I last had a blood test, since I sacked my GP. I've been dosing by symptoms. I am intelligent enough to know when I'm getting better and when I'm getting worse. And so far, I'm doing a better job at getting me well than any doctor ever did! :)

  • Well done you!! sounds really good to me. Ummm very tempting, do you mind me asking what do you use and who do you purchase from? So many different choices.

    Thanks for reply x

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