GP refuses to test my free T3 and T4

Hi, I've had an underactive thyroid for nearly 30 years now and have only seen an endocrinologist once in all that time, and that was after being newly diagnosed. For years I've been plodding along pretty much exhausted all the time but putting that down to my chronic iron deficiency anaemia as my TSH, apart from a couple of times when it was high (and levothyroxine dosage was subsequently increased), was always within normal limits.

The thing is I have all of the signs of an underactive thyroid, but surely if I was well controlled I wouldn't have any symptons. My temperature is always low, I'm intolerant to cold but strangely even more intolerant of heat, (I hate the Summer because of this). I'm always tired, but not just tired, bone tired, I have no energy for anything. My skin and hair are dry, my brain is foggy and getting worse, trying to have a conversation can be difficult when I sometimes struggle for simple words. My partner gets fed up of me substituting the word 'thing' while I am trying to come up with the word I want, but it's either that or stop talking.

Just lately my already thin hair has been shedding more than ever, so much so that you can easily see my scalp. This is what took me to my GP as I hate going there and so rarely do. Having read on here about T3 and how it can be as important to replace it as well as the T4, I thought I would ask her to check my free T3 and T4. She said she couldn't check it if my TSH was okay. She's given me a form for this to be tested but that's it. She also said my hair loss was more likely due to my age as I'm perimenopausal. Do you think it is worth asking if I can see an endocrinologist, or can she refuse if my TSH is within normal limits? Sorry for the long post.

I look forward to receiving any advice you can give me.

16 Replies

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  • Welcome to the forum, Jaspersas.

    There are some GPs who won't test FT4 if TSH is within range. There appears to be an assumption that normal TSH=normal FT4 and FT3 which is often rubbish. Even if the GP/endo orders a FT3 test labs usually decline to test it unless TSH is suppressed.

    You can order private FT4 and FT3 tests from Blue Horizon and Genova via thyroiduk.org.uk/tuk/testin...

  • Hi Clutter, thank you for the welcome and for that information. When I told my partner that she wouldn't do the tests he said we should just pay to have it done. I will do this, but as I haven't done it before, does the lab send the test results to me or my GP and if the tests do show I am low in t3, can she still refuse to prescribe it?

  • Jaspersas, the results will be mailed to you. The link will explain the process.

    Some GPs will prescribe but many won't prescribe T3 without direction from an endo so you may need a referral. Email louise.warvill@thyroiduk.org.uk for a list of recommended endos in your area and ask to be referred to one of them.

  • Thanks again Clutter. I've just read the link and I don't know if I'm being daft but how do I get the blood sample to the lab, can it just be sent through the post?

  • If you order from Genova they send you a kit out with all the instructions and all the packaging materials you need to return your samples. It can be returned in the post if you choose "guaranteed next day delivery", or by courier (which is more expensive). If you use the Genova automated kit ordering line you are not asked to provide payment details when you order. You have to give "Thyroid UK" as the practitioner when asked. Payment details must be provided when the samples are returned by post or courier.

  • Hi humanbean, lots of good info there, thank you.

  • Genova run a courier service for samples. I had to pay £12 to get saliva samples collected to be taken for the lab. I'm assuming it's the same for blood.

    Good luck with the testing!

  • Hi Helcaster, do you know if the couriers deliver the same day? I'm in the West Midlands, if that makes a difference.

  • Hi Jasperas, I'm classed as the West Midlands, right in the sticks on the Shropshire/Powys border. The courier came to me around 5 pm, for delivery to the lab by 9.00 am the next morning. You will receive an instruction booklet on all this and how to do the tests with the pack they send out. I have only used Genova, so it's all I can comment on. With the saliva tests for instance I froze my samples until collection. All will be explained to you, and they're really helpful and reply promptly if you email.

  • Jas[ersas, yes, instructions will be sent with the kits.

  • Iron deficiency anaemia can result in hair loss, ferritin is storage iron - have you had it tested? along with B12 & folate, Vit D. Biotin is another culprit for hair loss (part of B complex vitamins/nutrients) - just in case it helps... J :D

  • Hi Sparerib, thank you for your input. My ferritin is low, I also have puny sized elliptical red cells, and my Hb is usually 8-9. I have terribly heavy periods, which last for a full seven days every four weeks. I take Ferrograd 200mg BD, but still can't bring up my Hb.

    I suppose I've never know what to attribute my thin hair to as I have two things that can cause it. All I know is that I keep shedding at the rate I'm going, I'll be bald within a couple of months. :(

  • Ferrograd isn't a good choice of iron supplement. It is slow release which sounds great. But iron is only absorbed over a very short area of intestine. So, once you swallow a slow release pill only a fraction of the iron in the pill gets absorbed - the rest is released in parts of the gut where the body can't absorb it.

    One of the best irons (if you can tolerate it - many people can't, which makes life difficult!) is ferrous fumarate. It can be bought over the counter at some pharmacies - shop around to find one that doesn't insist on a prescription. I buy mine from Lloyds.

    What I buy is :

    Ferrous fumarate 210mg, in boxes of 84. This is sufficient for dosing 3 times per day for 28 days. One box costs me just over £4.

    Take each pill with 500mg - 1000mg Vitamin C. Iron makes many people constipated. The vitamin C gives many people diarrhoea. Taking the two together makes life more comfortable. Vitamin C also helps with absorption of the iron.

    This is a link to the British National Formulary (the publication which tells doctors what they can readily prescribe) - read what it says about "Modified-release preparations" of iron (like ferrograd) :

    evidence.nhs.uk/formulary/b...

  • Hi again. I knew that Ferrograd was slow release but I never knew about iron only being absorbed by part of the intestine. I love this site, you learn so much. I'm surprised this is even prescribed and wonder if the GP's are encouraged by the pharmaceutical reps in some way to do so.

    I used to be on plain ol' ferrous sulphate before my GP changed it to Ferrograd. I've never tried ferrous fumarate but will get some tomorrow. The chemist I get my prescription filled is a Lloyds, so hopefully they'll have the same box. I take vitamin C too. The one I use is by Vitabiotics, their 'Ultra Vitamin C Sustained Release with Citrus Bioflavonoids, which I take one twice a day at the same time as my iron.

  • It just occurred to me to mention :

    If you increase your iron intake it would be a good idea to ask your GP for a full blood count, ferritin and an iron panel (serum iron, TIBC, transferrin saturation) to be done in about 3 or 4 months. When you change your dosage or type of iron you won't have any idea how well your body is absorbing it. Iron is poisonous in overdose. (On the other hand you could be a slow absorber like me - but until you get tested properly you can't know this for sure.)

    Ask for copies of the results, and read up on what all the different things mean. Don't just look at the individual numbers because they can be misleading. What I do is calculate how far each result is through the reference range as a percentage.

    It is often quoted on here that a ferritin level of 70 - 90 is ideal. Last year, after supplementing for 6 months, I got tested (privately) and my ferritin was 67.7 (reference range 13 - 400). Sounds like it was almost perfect. But convert that into a percentage, and a level of 67.7 is only 14% through the reference range I was given. At the same time this was measured, my haemoglobin was 3% of the way through the reference range and my haematocrit was 0% of the way through the reference range, and I was still suffering from severe breathlessness. I continued to supplement.

    A few months later I got tested again and my ferritin was 41.5 (reference range 13 - 150, a much narrower range compared to my earlier test) which looks worse. Converted to a percentage this is 21% of the way through the reference range. So it had actually improved. So be careful when interpreting the numbers.

    A final point :

    Stop supplementing iron 5 - 7 days before testing. If you don't stop, some of the things you are measuring will just reflect the dosage of the iron pills you have been taking, rather than the actual level in your body.

  • Hi jaspersas.

    You sound just like me, I am 51 had trouble with illnesses all my life, diagnosed with hashimotos autoimmune 4 years ago, started on thyroxine no change after months, got very ill back to gp hrt menopause, got even worse, so stayed in bed for about 4 weeks, could not get right. Back to gp wanted to section me shove a load of antidepressants at me get on with it.

    I have learned from this forum that thyroxine should be increased because of the hrt, higher dose makes my heart race and jump out of my chest, my hair is like straw, and falling out, I can't eat I am sweating like ten men, or that cold can't feel my fingers, just lost with it all.

    It's despareing when gp won't listen and all obs come back ok.

    I have just found a new gp and she is brilliant all the test under the sun having lump investigated in my throat, being refered to endo and ent just developed Ménière's disease as well, just wondering what next,

    Nov 2014 tsh 0.33 (22-42). T4 22.9 (12.22) no eastrogen

    Sept 2014 tsh 2.10 (0.40-4.00) t416.5 (12.22)

    Aug 2014 tsh 2.56 (0.40-4.00) t4 15.7 (12.22)

    July 2014 tsh 2.56 (0.40-4.00) t4 15.7 (12.22)

    July 2014 tsh6.74 (0.40-4.00) t4 15.1 (12.22)

    Feb 2014 tsh 2.16 (0.40-4.00) t4 15.6 (12.22)

    Nov 2013 tsh 3.02 (0.40-400) t4 13.8 (12.22)These are my results.

    Good luck and I hope you get some normality soon.

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