How do you find the energy to carry on?

It's just so depressing to not get the results that will make a gp wake up and do something for you.

Just collected my latest blood results and I'm ashamed to say that I am gutted because they are in range and they look better than 3 months ago. I don't feel better though. I had an appointment with the gp in 10 days time but I have cancelled it because I just don't think there is any point in going just to be smirked at. I really can't take another pointless appointment. He had told me he would test IF for PA but hasn't.

I had tests at 7.30 am, didn't fast. Don't have a diagnosis yet but I suspect possible Hashi.

Folate has improved...from 3.83 in January to 20.72 but I have been on 5mg of folic acid for a month.

B12 gone from 488(211-911)in January to 410 which I know he will say is fine because he thinks his levels of 90 are fine!

Ferritin has gone from 7.8(10-291) in January to 9.6 which is a slight improvement. Have been on 3 doses of Floradix x day for 2 months then stopped for the tests. Planning on restarting it now. I know it takes a long time to improve ferratin so glad to see it has at least gone up this time instead of going down like it had previously.

FBC looks very similar to 3 months ago and nothing out of the ordinary there

Had ESR tested and I am bang in the middle of the range 6 (3-9) so that looks ok

Calcium levels also look ok.

TSH has gone like this:

Aug 13 1.4 (0.35-5.5)

Jan 14 3.4

March 14 2.4

So it's gone down.

FT4 has gone like this:

Aug 13 16.4(10-19.8)

Jan 14 13.3

March 14 14.7

Still waiting for Vitamin D which was low in the summer so have been on 5000 x day. Also waiting for TPO results. As TPO had been climbing (92 in Sept and 247 in January with range of 0-100) I know that Hashi is a possibility and I keep telling myself that tsh isn't a perfect test and that if I do have Hashi tsh swings all over the place. It's just really hard to stay positive. Perhaps I have reached that point where private is all that is left to do but even that doesn't sound like it's always the answer.

Sigh

I'm having a crappy day and I'll get over it...just needed to vent and whine for a few minutes to people that understand how disheartening it is to get good results when you still feel absolutely rubbish.Great big fat bummerrrrrr :p

14 Replies

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  • Your TSH has gone up in Jan '14 and a bit lower in March but I think you need an increase in meds as Dr Toft says:-

    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.

    He also goes on to say that some need a suppressed TSH to feel better or the addition of some T3.

    I am sorry I didn't realise you haven't as yet been diagnosed. Maybe these links will be helpful especially interpretation of blood results.

    thyroiduk.org.uk/tuk/diagno...

    thyroiduk.org.uk/tuk/about_...

    thyroiduk.org.uk/tuk/about_...

    thyroiduk.org.uk/tuk/testin...

  • I wish that was the case. No diagnosis so no meds for me :( The only things I have been taking are folic acid,vitamin d and floradix.I'm clinging on at the moment waiting for antibodies results but as those can wax and wane too who knows what they will be like. And even if they are higher than January gp will probably just tell me that it's stress like he did last time. Apparently according to him people that are stressed will all have thyroid antibodies. Time for a new gp maybe? ;)

  • Perhaps he should rephrase that to 'people I see with thyroid problems all seem to get stressed because I don't do anything to help them!'

  • If only!!! That would be admitting being wrong. I think the worst thing that doctors often seem to forget is that theirs is a medical OPINION not necessarely the correct answer.

  • Thank you for all the links Shaws,just read through them and in a way has made me feel better. I have an awful lot of symptoms which must be caused by something. You don't lose hair and have constant pins and needles for no reason. Plus those antibodies aren't meant to be there....

    The interpretation of blood results always makes me sad...if only gps would follow that rather than the stupid 5.5 :(

  • Looking at your January results, you look as if you have Hashi's to me:

    January 2014:

    TSH 3.40 mu/L ( 0.35-5.5)

    FT4 13.3 pmol/L (10.0-19.8)

    Thyroid peroxidase antibody 247 iu/mL (0.0-100.0)

    Your TSH is too high, your FT4 is too low and your TPO antibodies are out of range.

    What's your GP waiting for?

  • Thank you for your thoughts. I really am not an expert but I agree with you, that has been my feeling for months now.

    What is my gp waiting for? No idea, he thinks I do not have a thyroid problem. My antibodies are present because I am stressed and he is trying to slap a CFS label on me.

  • They do not have a clue what to do if you have antibodies. Mostly "keep taking the levo" is their answer. Try reading about auto immune disease and gluten! Robb Wolf- the paleo solution. I'm going to try gluten and dairy free see my previous posts. I still have a lot of symptoms. My Tsh levels were all over the place and then I asked for TPO test which showed high levels. I am better with a suppressed TSH

  • I have been up and down with my underactive thyroid for about 3 years

    I also have parathyroid which I have just been ref to endocrinologist for,

    I had chronic urticaria last year due to my thyroid and that was the worst

    time I work full time and have struggled with concentration and fatigue

    but to cut the story short I have had a lot of support from friends and

    family you will get there in the end keep strong .

  • Hi Chihiro, with a ferritin level of 9.6, that could be singularly the root of all your problems, in my experience? I was at 19 (range 14 to 200) and had debilitating symptoms including extreme fatigue, brain fog and hair loss. I researched everything myself, not being able to get answers from doctor, and came up with stream of recommendations to check ferritin as a deficiency mimics symptoms of hypothyroidism and certain levels are needed to enable the organs, including the thyroid, to work properly. The answer I got from the doctor was 'ummmmmm, your ferritin level is quite low, still in normal range and not flagged, but it is on the low side'. He prescribed Galfer 2x daily, and after taking that for 2 months, I managed to raise my ferritin from 19 to 46. I feel significantly better though not fully there, and am continuing to take same level of iron to raise my ferritin to optimum levels. Most sources say you need a min. level of 70 for hair growth/regrowth and around 100 for optimum functioning of organs including thyroid. Yours is very, very low and Floradix is definitely not strong enough to get you back to where you need to be. Look up 'ferritin and hair loss' and 'ferritin and thyroid'. Best of luck to you!

  • Thank you all for your replies and advice.

    Thyroidandroid I do agree that my low ferritin could be causing a lot of my symptoms but I know it's not only that. My antibodies have gone even higher now which makes me think I have Hashi. I have read that people with Hashi often have difficulties keeping their iron levels up as well as b12 and d.

    I'm seeing my gp tomorrow and will ask for iron tablets and give them another go. I can see that Floradix isn't enough. My periods now last 7 days and they are really heavy so I can imagine that isn't helping either :/ I will try to take iron tablets with vit C as I have been advised that will help with constipation which is main reason why I took Floradix in the first place as I suffer with constipation already and iron tablets in the past have made it so much worse!

  • Definitely research and ask re ferritin and go on something stronger than Floradix. I recently switched to Ferrograd C instead of Galfer due to stomach issues. Believe it is equally strong and it also contains Vit C which helps absorption, but... I'm a little bit curious as to whether it works as well, as it is (sorry to be graphic here)... it is not turning my poo black like the Galfer did! Last few poos have ranged from yellowish to darkish brown, but am not getting the black poos that I was getting with the Galfer! Does anyone know what this means in relation to absorption? Does black poo mean you are absorbing more iron or could it actually mean you're absorbing less as more 'black' is excreted? Any guidance on this would be appreciated, have started to feel a little more tired again whilst on the Ferrograd C! Good luck with your appointment and do keep us updated on how you get on!

  • Thanks. Is Ferrograd on prescription? With the Galfer when you say stomach issues do you mean stomach pain?

  • No, it's just OTC. Stomach issues as in those associated with the hernia I have, i.e. acid reflux (constant burping!)

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