Test results - complicated and would welcome any thoughts!

[Bagpuss]

Hello

I have felt that I had a hypothyroid issue for many years. My TSH finally went out of range in 2010 and armed with copious research and BMA book by Anthony Toft (and info re low T4 high normal TSH) I was given Thyroxine 50mg and struck lucky with an Endo who a bit later added some T3.

I have been battling a chronic bladder pain condition, iBS, SIBO, Gastroparesis ,Fibro, CFS and various other things since 2008 - presumably some of this is thyroid related. I found my relief at being given meds was short lived as the Thyroxine and T3 aggravated my already severe pain and I had to stop them. I have been working on various gut healing protocols and herbal regimes since then and have seen slow improvements in my bladder condition and gut problems.

My endo is ok with me trying thyroxine at various doses to see if I can tolerate it again which I have done over the last couple of years but always have had to stop it due to increase in bladder pain and symptoms.

So I have some new blood results as I wanted to see what was happening:

TSH 4.9 - range 0.35 -5

Free T4 10.5 range 9-24

Free T3 4.8 range 3.5-6.6

Ferritin 40 range 15-250

Vit D 102 range 75- 200

Folate - normal - no numbers or range given

B12 - 253 - range 200 - 900

Platelets also raised at 470 range 150 - 450 - These have been high on previous tests too but never followed up

Liver ALT 63 0-50 Mild transaminits, ok - again has shown up on previous results but never followed up

I also have thyroid nodules which were biopsied in 2011 but not followed up since then. I am not clear if they could be contributing or are connected to anything.

I know I need thyroid treatment and I think my results confirm that?

I wonder if anyone could offer me any thoughts about where to go next re thryoid treatment? I have a doc who will try me on T3 only which I thought would be worth a try ? Or maybe I should be looking to try NDT next?

I have put on 4 stones in weight and eat very little and try to walk every day but am totally exhausted all the time to the point where I cannot work currently. I felt much better when I was taking thyroxine so I know I need it regardless of bloods.

Could the raised platelets and raised liver enzymes be connect with thyroid? I am not sure whether there is a direct link to the weight gain as looking back through my past results I see the ALT has been up and down a lot even when I was lighter although I think one doc told me it was due to my weight but if that is correct , surely it would stay elevated all the time.?

Can anyone advise about iron supplements as again I have been unable to tolerate in the past due to gut issues.

Sorry this is so long - I tried to keep it brief but didnt do so well! Thank you very much for reading and for any help or suggestions you can make regarding my questions or anyone who is treating with T3 alone.

I havent found much help thorugh NHS for any of my health problems ( which actually began after some surgery and contracting an infection from the hospital) and feel very alone in trying to unravel all this so any suggestions welcome for moving forward as my weight and exhaustion are just so depressing, terrrifying and debilitating.

Thank you.

[Marz]

...thyroid anti-bodies ? - have they been tested ? Gluten ? - may be worth trying to give it up - can be such a good thing for many of us. TSH too high - FT4 to low - B12 too low.

[PinkNinja]

Hi

Your ferritin is quite low in range which might be contributing to your problems of tolerating thyroid hormones. It is best around 70-90 so you may find you benefit from taking an iron supplement with vitamin C. The vitamin C will help you to absorb the iron which may in turn reduce any side effects. I take Spatone because I don't tolerate iron supplements either. Ferroglobin is another that people mention and also Solgar gentle iron.

Your B12 is also very low in range so it might be a good idea to take a supplement in the form methylcobalamin. It is quite a good idea to supplement with all the B vitamins so a B vitamin complex might also be a good idea. It will contain B2 which helps your body to store iron.

I don't know if the raised platelets and liver enzymes are caused by the thyroid but if your liver isn't too good, that will affect how well your body can convert thyroxine to T3 and could be part of the problem.

I would say that your blood test results suggest that you need thyroid hormone replacement. Getting your ferritin up should help you tolerate this and T3 may be the way to go although it doesn't suit everyone and you won't be able to get to your optimum dose if your iron is too low without getting side-effects similar to being hyper.

It might also be worth looking into whether your cortisol levels are low given you had a period of illness. It could be contributing to your symptoms and be another reason why you didn't feel right on thyroxine.

I hope that at least starts you in the right direction.

Carolyn x

[Bagpuss]

Thanks so much both for taking the time to reply.

Gluten free is my next thing after Xmas and I don't believe they tested antibodies even though GP said they wud. So I will chase that up too.

Do you know if B12 and ferritin are low due to gut problems or is it just something that happens with illness or hypo? If they are low how does that impact thyroid replacement ?

I did have a 24 hr urinary cortisol done and my cortisol was high so a demethexasone ( Cushing's syndrome ) test was done but that came back normal. Is best adrenal / cortisol test a private saliva test ?

Would it be a sensible idea to try and get these other levels up before trying again with any thyroid meds ?

I'm so desperate to try them again due to my weight but my bladder reacts so severely - guess that's just my weak spot. When I took thyroxine previously , it did help my fatigue and weight within weeks so it breaks my heart that I can't tolerate it. Will keep trying and maybe sorting these other Things out will help my body process it as u say.

I really appreciate your help.

[Clutter]

It is worth seeing if you can tolerate T3. NDT has T4 & T3 but if your liver isn't converting T4 you won't be getting an optimal dose. T3 has a short half life and if it does upset your bladder you can reduce the dose or stop it and it will be out of your system in a couple of days. You can split dose throughout the day and start lowish to test your tolerance, raising to full dose over a week or two.

Carolyn is spot on re ferritin, B12 and B complex.

[Bagpuss]

Hello all - thanks SO much for helping.

Re T3 - I was thinking of starting low as you suggested with 10 mg a day ? then increase to 10 mg twice a day? IS this better than taking 20 mg all in one go given the short life of T3?

Now Im wondering if its better to start the iron and b12 and see if I can tolerate those and then add the T 3 in a couple of months or will it be worth trying to get some T3 into me now - i feel like my body is screaming out for thyroid help! The weight alone is unbearable and i am also hypermobile/EDS diagnosed so worse for joints as I have poor/defective collagen in my bones and tissues.

The GP receptionist is meant to be calling me back to tell me if the lab did the antibodies - on the computer it says autoimmune profile - GP obviously thought that meant thyroid antibodies so will see ! Maybe the lab wouldnt do it as my T3, T4 and TSh are in range?

My diet is clean - no alcohol, no caffeine, sugar free, meat and veg and fish. I do use cast iron cookeware and glass and eat spinach every day - my ferritin was at 18 for ages so 40 is still an improvement! I barely eat gluten now but do sometimes eat spelt so need to cut it out totally for a while and see if any help. The doctor I work with uses a wide range of herbs and probiotics for gut healing and bladder healing.

Are there any articles or links regarding how low ferritin and low B12 affect thryoid function or uptake of supplementation?

Any other ideas on high platelets or the liver ?

Thanks for all your help - Im getting a plan together!

xx