Feeling warm - new blood tests suggests still hypo, doctor is investigating RA please advice

Since my last post 2 weeks ago, I stopped taking a quarter of a 25 mg liothyronine tablet with my levo (100 mg) which I had been trying for 4 days.

I had swollen and achy joints in my hands wrists and feet, and was (and still am, especially at night) feeling hot even though it's quite cold here in Manchester and had a slightly elevated temperature in the afternoon (37.5) for the past 3 weeks. This is strange for me, I have always been cold in the Winter, and always had icy cold hands. Now even though less achy they are slightly swollen and warm. My neck and back hurt a lot but I wonder if it might have to do with not exercising, spending too much time slumped while breastfeeding my baby and being woken up at night by baby. Clutter advised I should see a GP about the hand and feet pain and I was lucky I saw a new GP who seemed sympathetic to the idea of upping my levo if necessary even though I was still within range. I showed the GP my bloods done in Italy on January 7th and he examined my joints. He said he would consider more levo but he wanted me to have new bloods done, including tests for Rheumatoid Arthritis.

Because of feeling warm, I was a bit worried that the bloods would show I was becoming hyper but apparently that's not what is going on.

Here are my new thyroid results:

TSH 3.3 (0.20 - 5)

T4 16.7 (9 - 24)

These are the previous ones from January 7th:

TSH 2.6939 (0.2800 – 4. 6000)

FT3 2.54 (1.40 – 4.20)

T4 11 (8.0 – 22)

In terms of RA, nothing has come out from the blood tests but I have been referred to see a rheumatologist. I am very surprised, I have never been referred to se an endo even though I asked, so how come this referral has been so easy? Yesterday I went back to see the GP. He said my bloods were all really good. He also changed his mind about upping levo when results are within range: apparently his colleague told him there's no evidence that it might help :(

In terms of what I can see, my B12 has improved a lot, it's gone from 421 in May 2016 to 843, which is even more than top of the range (197-771) and my folate has also improved a lot. Shall I stop taking the B12 and B Complex supplements I have been taking since beginning of December then? And my ferritin has gone up to 65.2 (13-150) from being 25. I run out of Ferrous sulphate tablets and I guess I don't need them anymore? The only things that are marked as requiring attention are my Erythrocyte sedimentation rate which is 9 mm/1stHr (<7.00mm/1stHr) and my Haematocrit which in all the bloods in the past year has always been slightly low 0.36 (0.37-47) but it says no further dr action so I guess these don't mean anything?

I am wondering what's happening to my thyroid, why do I have exactly the same TSH and T4 as in November, when I was taking only 75 mg of levothyroxine, when I have been taking 100 mg for 2 months? I was really interested in what SeasideSusie said about my T3 to T4 convertion rate seeming good and that I might be better off trying more levo rather than taking T3, but after feeling so warm and having a bit more energy, even though I'm achy, and feeling my heart pounding a bit from time to time I am not sure I need to up my medication....

The GP said I should still book my rheumatologist appointment as the blood tests for RA being negative don't mean I don't have it, so I'm going in a month.

Emotionally, it's quite tough at the moment, as the anniversary of my mum's passing approaches I think a lot about what happened. It was traumatic, I was the one who found her when it was already too late, she was only 61 and had had mental health issues for 10 years, she took a lot of medication for that, but was also hypo and on levothyroxine. I am 37, I have a 14 month old little girl who's doing great but still breastfeeding. I don't have a job because I was freelancing in London and studying for my PhD when I got pregnant. We bought a house that needs a lot of work and I am doing most of it by myself (my partner is lovely and very supportive but doesn't diy), and as I am finding it very difficult to find the drive to focus on what I was interested in before and on finishing my studies, I worry a lot about how I am going to get back into work and how I will be able to contribute financially to our little family.

Just wanted to make people aware of the context, in case they think some of my issues might be emotional rather than thyroid related. I also see a therapist once a week.

Really looking forward to your advice, this forum has been so helpful to me!

17 Replies

  • Assunta79,

    You are under medicated to have TSH 3.3 while you are taking Levothyroxine. If you have only been taking 100mcg for two weeks TSH and FT4 won't have had long enough to respond to the dose increase. Testing should be done 6-8 weeks after a dose adjustment.

    You've been referred to rheumatology because the swelling and pain in your joints can be due to RA even though you are sero negative. Rheumatology will want to prevent your joints becoming deformed as damage isn't usually reversible.

  • thanks @clutter, I have been taking 100 mg since early December so for 2 months

  • Assunta79,

    In that case, you need another dose increase. It is possible that the swelling and pain you are experiencing is due to under medication as you are sero negative for RA. Joint pain can also be caused by low vitamin D so that is something else to check out.

    The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 1.0 or lower with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.roberts@thyroiduk.org.uk if you would like a copy of the Pulse article to show your GP.

  • Thanks Clutter, I have the article and I was ready to show it to the GP but I am perplexed by my new symptoms so didn't know if I should still push for more levo. Do you have any thoughts re grading feeling too warm all the time?

  • Assunta79,

    It could be due to under medication, it can take people in different ways with some too cold and some too hot. I can only suggest you try a dose increase to see whether or not any or all of your symptoms improve.

  • thank you Clutter and sorry for pestering you, but if you were me would you try T3 again at all? so grateful for your help x

  • Assunta79,

    Why did you stop taking it?

  • I took it for 4 days, and it was at the time that my joints started aching and swelling. I posted about it and members advised I might be having an adverse reaction to it, and also that given my T3 and T4 being FT3 2.54 (1.40 – 4.20)

    T4 11 (8.0 – 22) it was suggested I was converting well and would possibly benefit more from an increase in T4.

  • Assunta79,

    I'd try for an increase in Levothyroxine then because that will raise FT4 and FT3.

    How long since you've taken T3?

  • Clutter I took it for 4 days and stopped taking it exactly 14 days ago

  • Assunta79,

    T3 will be completely out of your system by now so the pain and swelling may not be related to taking T3.

  • would you give it another try if you were me? or would you try self-medicating with t4

  • Assunta79,

    If you have both I would try Levothyroxine first.

  • thanks @clutter! again, I'm so grateful for your time

  • Its possible you are unable to tolerate the synthetic nature of levo or t3

  • Just a comment, ignore me if you wish. But I was diagnosed with RA following an infection that the whole family had, my son brought from school. Gastric flu type. My husband had for 2 days, children delerious high temp for a week, I for 3 weeks, didn't eat for 3 weeks and then started with RA symptoms in hands, woke up with a different swollen finger each morning. Often RA starts foll an infection - the trigger to antibody production/autoimmue

    I was diagnosed by effect on joints rather than blood tests Rheumatoid Factor. Something /a guardian angel. who knows,preserved me 21yrs ago from accepting the medication they wanted to prescribe me. Note Methotrexate is a chemo drug. Mainstream Rheumatologist's see the joints being attacked by the immune system and their answer is to suppress the immune symptom not find the root cause. Supressing the immune system leaves you open to many illnessses and conditions and what ever caused the issue is still happening. You don't take your car to a mechanic with a poorly working engine and an engine warning light flashing on the dashboard and expect the mechanic to pull the electric supply to the warning light and say all fixed.

    You have a young toddler - so did I. Quite possibly you are suffering from hashimotos thyroiditis, which is auto immune attack of your thyroid, many more women than you would believe develop following post partum (birth) Have you had Your TPO and TG antibodies to your thyroid checked? Make sure GP tests for both as one can be normal. GP's tend to test for TPO only. Not good enough Hashimotos would account for up and down thyroid activity as the thyroid gland is blasted and thyroid hormone from the damage is released into the system.

    Once you have one autoimmune condition it is probable that you develop another dependant on triggers. When you have had your baby you could very well have become undernourished especially with breast feeding and so will probably be suffering from depletion of nutrients. Typical scenario. The answer is not to clobber your immune system with toxic drugs but support your body back to health with nutrition and supplements. This may mean radically altering your diet and taking lots of nutritional supplements to get you back on track. This is good news - you have contol. You just need good advice and to learn a lot when your baby is tucked up in bed. Watch you tube videos of part of the 'Betrayal Series - what they are not telling you about autoimmune' Dr Tom O'Bryan interviewed 85 of the worlds cutting edge experts, doctors scientists about autoimmune. Dr O'Bryan's website contains videos and lots of info thedr.com Read the Perfect Health Diet Paul Jaminet and his wife's book, Nasa Scientist and microbiologist to get an idea about nutrition and what to eat or Chris Kresser's website - lots of podcast interviews of the leading minds and articles re the thyroid and articles on everything else. Just google Chris Kresser thyroid. or chris kresser autoimmune etc. Read Sarah Ballantynes Paeo Approach - Reverse Autoimmune Disease and heal your body (this is what to eat and what not to eat) Probably the only book you need to buy and read. Sarah has a doctorate in medical biophysics and spent 4 years studying auto immune and the inflammatory process - she is now a stay at home mum. She suffered auto immune and improved her health dramatically. This book is £21 on amazon but worth every penny, huge and you will want to dip into it every day for advice. Don't get overwhelmed - just get this book, every day will be a better day as you learn and apply and you will ensure a healthier future for you and your baby.

    Don't keep that rheumatology app - I did and refused all medication for 21 years- but it is difficult and the docs don't like it. I just told them how I was, what supplements I was taking and diet - I thought they would be interested as I improved - but they weren't. Defer it say you can't make and will ring to rearrange. Learn a lot - Read half of Sarah's book and then feel equipped to attend. Maybe this sounds far fetched Dr Terry Whals - developed MS - autoimmune - she was bedridden. Cured herself too with her own similar autoimmune protocol. Thinking of you :) x

  • Hi LynneG, thank you very much for your comment! will have to read it again when baby is asleep. In terms of Hashimotos, I have already done the test twice, once in October and once in January and I don't seem to have the antibodies, these are my latest results:

    Antithyroglobulin Antibody (TG Ab) 0.8 (<34.0)

    Antithyroid Peroxidase Antibody (TPO Ab) 0.3 (<12)

    So I might not have Hashimoto? My mum and my grandma both had hypothyroid conditions but I don't know if they had Hashimotos


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