GP wants to reduce my dose

[helen_m]

Hi all

I'm taking 125 mcg of levothyroxine and 20mcg of liothyronine. My levothyroxine had been increased by 25 mcg approx January this year as I had ongoing fatigue symptoms. GP had suggested levo increase. At the same time, he tested iron and that was found to be a little low. He prescribed me Syrton which unfortunately I couldn't take for long as I get nasty symptoms from iron supplements, so I've been taking Floradix tablets and desiccated liver capsules as alternative ways to increase my iron. I have two sets of blood test results and they didn't test the same things each time, so hard to compare them. What did happen with the levothyroxine increase is that my TSH decreased even further to lower than 0.01 and for that reason, he wants to change my dose back to 100mcg.

Blood test results March 2019

Serum B12 720 ng/l (200 - 883)

Serum Ferritin 79 ug/l (15 - 200)

Serum Folate 3.6 ug/l (3.1 - 20.0)

Total T3 1.4 nmol/L (0.9 - 2.5)

TSH <0.01 mU/L (0.35 - 5.00)

Free T4 12.6 pmol/L (9.0-21.0)

Transferrin/Iron

Transferrin 2.20 g/L (2.00 - 4.00)

Iron 12 umol/L (10 - 30)

Transferrin Saturation 22 % (25 - 50)

Blood Test results June 2019 (accidentally took meds beforehand so free T4 and Total T3 are higher - TSH is same)

Serum Ferritin 48 ug/l (15 - 200)

Total T3 2.5 nmol/L (0.9 - 2.5)

TSH <0.01 mU/L (0.35 - 5.00)

Free T4 15.00 pmol/L (9.0 - 21.0)

They also did a full blood count and white blood count is low, neutrophils and eosinophils almost non-detectable, so I'm getting referred to haematology - even though it is always low. I think it's got even lower.

I asked my GP what if I get tired again, and he said if so, then he'll raise my levo again and then ask endocrinology what to do. He's aware that T3 suppresses the TSH and free T4 but he said until there's consensus amongst endocrinologists and boffins there's not much he can do against that. What I am concerned about is the low iron and ferritin has dropped despite me taking liver. I am post-menopausal so not losing blood to periods anymore. I'm still a bit tired but not as bad as I was earlier this year.

Thanks

Helen

[SeasideSusie Remembering]

helen_m

As you are taking liothyronine it's essential to test Free T3 and any doctor prescribing it should know that. Total T3 tells us nothing useful, it is the measure of bound plus unbound (free) T3. As it's the Free T3 that is available to the cells, that is the measurement that is needed. We can have a good level of Total T3 but that doesn't mean there is a good level of Free T3 for the cells to use.

He's aware that T3 suppresses the TSH and free T4 but he said until there's consensus amongst endocrinologists and boffins there's not much he can do against that.

If he knows that, does he not use this knowledge for the benefit of his patient? Also you cannot use TSH alone as a tool for dosing a patient. You have to take the actual thyroid hormones into account to see where they lie within their range - FT4 and FT3.

If I was in your position, I would ask for a Free T3 test done at the same time as FT4 and TSH. Get the whole picture. If your FT3 is in range, you are not overmedicated. I would not reduce my dose unless this complete panel of tests was done.

What I am concerned about is the low iron and ferritin has dropped despite me taking liver.

Transferrin 2.20 g/L (2.00 - 4.00)

Iron 12 umol/L (10 - 30)

Transferrin Saturation 22 % (25 - 50)

Serum Ferritin 79 ug/l (15 - 200) = 35% through range

Optimal iron levels, according to web.archive.org/web/2018083... are

Transferrin: Low in range indicates lack of capacity for additional iron, high in range indicates body's need for supplemental iron

Serum iron: 55 to 70% of the range, higher end for men

Saturation: 35 to 45%, higher end for men

Ferritin: Low level virtually always indicates need for iron supplementation, high level with low serum iron/low saturation indicates inflammation

or infection

So your March results for your iron panel are poor.

Now your June results for ferritin have fallen even more to

Serum Ferritin 48 ug/l (15 - 200) = 18% through range

As you're being referred to haematology, I would discuss this with them.

[helen_m in reply to SeasideSusie]

Hi SeasideSuzie thanks so much for comprehensive response. I'm going to make another appointment tomorrow with my GP and refuse to let him reduce my dose. I've not managed to get him to test my free T3 before, although I have bought a medichecks test (that I've not used for months!) so I'm going to ask for a retest and also take information with me about the inadequacy of using low TSH as a means to reduce doses (I'm sure there is research on this somewhere). I also wasn't quite aware how much low iron can affect T3 working - I thought I needed more T3!

[SlowDragon Administrator]

As you took medication before blood tests you really need to retest

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

If/when also on T3, make sure to take last dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

You also need vitamin D tested

vitamindtest.org.uk

[helen_m in reply to SlowDragon]

Hi slowdragon - thanks for this. I kicked myself when I realised I'd accidentally taken my meds. Both of you have made me realise I can't just lie back and let this happen. I need to make a doctor's appointment tomorrow and have a wee fight again

[helen_m in reply to SlowDragon]

Ooops meant to say my vitamin D is good. Its approx 140 nmol (last tested last year). I take 5000 ius daily, with vitamin K2 MK7 and magnesium

[Chippysue]

Do you take vitamin c? Vitamin c will help to increase your iron.

If you have a good independent local health shop they will advise on which brand. You can take an amount up to bowel tolerance.

It’s great that you supplement with vitamin d but do look at vitamin c too.

[helen_m in reply to Chippysue]

Will do. Had stopped taking vitamin C for some reason last year. Thanks!

[ElRR]

As to TSH suppression with T3 meds., I've had luck with asking my doctor what his suggestion for dealing with the suppression while still taking the medication I need. Is there anything I can do? With him not having an answer, he's dropped the suggestion of taking me off the meds.

[helen_m in reply to ElRR]

Thanks will give that a try - I've got another appointment for this Friday.

[helen_m]

Update - I had my doctor's appointment and I didn't even need to fight about this. He told me that blood test results are only a small part of this and what was more important was what I wanted. He put me back up to 125 mcg and bloods will be retested in 3 months. Still trying to get free T3 tested, seems to be a practice-wide approach, as I know others in Glasgow who have no problem getting that tested. Feeling better too on Solgar gentle iron. Thanks everybody for comments