Hi everyone, I was diagnosed with thyroiditis in January of this year. Results were as follows:
TSH: 18 miu/
T4: 10.9 pmol/L( normal)
Serum Thyroid peroxidase: 1300 iu/ML
FSH: 3 iuL (normal)
I then started on 100mgm Levo and markers reversed to:
TSH: 0.08 miu/
T4: 22.9pmol/ L
GP, then reduced dosage to 75g Levo and markers are now in "normal" range:
TSH: 4 miuL (normal)
However, my hands still feel like ice blocks, I'm experiencing stiffness in muscles and joints and don't sleep well. I've mentioned all of this to my GP in an online consult form. They even asked me "how do you want to be treated? " or something to that effect in the form, which I replied I'd like another blood test as I feel off. Unfortunately, this was overlooked and I've been referred to MSK/physio. 🙈
I'm gluten free since being diagnosed and take magnesium, selenium and zinc religiously. Can I ask for advice? I'm happy to manage it myself as I'm sick of being medically gaslighted or ignored. However, how often should my GP test my bloods?Any advice appreciated, happy to go private if that's the only option to feel better.
Also,if I get a comprehensive test and it highlights issues with T3 or anything else really. How do you navigate this? Through a private doctor?
Many Thanks
Written by
Deepatee
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Can you please add reference ranges for your test results. Ranges vary from lab to lab so we need the ranges that come with your results to be able to interpret them.
I then started on 100mgm Levo and markers reversed to:
TSH: 0.08 miu/
T4: 22.9pmol/ L
GP, then reduced dosage to 75g Levo and markers are now in "normal" range:
TSH: 4 miuL (normal)
First thing to say is that "normal" just means that the result is somewhere within the reference range but that doesn't mean that it is at an optimal level for you.
The aim of a treated hypo patient on Levo only, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their ranges, if that is where you feel well.
TSH is useful for diagnosis but once on thyroid hormone replacement then it doesn't have much use, it's a pituitary hormone not a thyroid hormone so can't tell us our thyroid status. FT4 and FT3 are the thyroid hormones and these tell us what we need to know, FT3 being the most important.
If your FT4 was at the top of the range, or maybe just slightly over, you may not be overmedicated, you would have to test FT3 to know that. However, I expect your GP was just looking at your TSH result which made him decide to reduce your dose and your reduction was probably too much, you could have reduced by 12.5mcg or even 6.25mcg daily.
Now you have a TSH of 4 you need your Levo increased again so ask your doctor to do this and use the following to support your request:
Fine tuning of the dose could be necessary in some patients
* aim of levothyroxine treatment is to make the patient feel better, and the dose should be adjusted to maintain the level of thyroid stimulating hormone within the lower half of the reference range, around 0.4 to 2.5 mU/l. If the patient feels perfectly well with a level in the upper half of the reference range, then adjustment is unnecessary
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
So your TSH can be very low in range if that's where you need it to feel well.
Whilst you are titrating your dose you should be retested 6-8 weeks after each dose change, once you are stable on your optimal dose it's usual for GP to retest once a year.
**
Also,if I get a comprehensive test and it highlights issues with T3 or anything else really. How do you navigate this? Through a private doctor?
It's really to early to think about that. You have to get your TSH down to 1 or below on Levo only, this then gives the highest possible FT4 level you can achieve then you look at the FT3 level. If FT3 is low in range this would mean conversion of T4 to T3 is poor so then you look at your key nutrients, if there are any low levels or deficiencies these need to be addressed. If all key nutrients are optimal and FT3 is still low with a high FT4 then that's when you consider T3.
By all means get key nutrients tested and put your results/ranges on here, but you can't do anything about knowing if you need T3 until you are stable on enough Levo to give you a TSH of 1 or below. You are still very early in your thyroid journey.
Thanks you so much for taking the time to respond Susie. Honestly, I didn't receive much advice from my GP and I've been googling as much information as I can but it's been difficult for me to interpret. Your answer has given me so much more than I expected. It's much appreciated. I've dropped the ranges below so you can see where I fall...
TSH 0.2-4 last tested in April 22, 4
T4 10-20 last tested in Feb 22 22.9
Serum Thyroid Peroxidase <100 last tested in Dec 21 1,300
OK, so your FT4 was over range in February so that, along with the low TSH result, explains why your Levo was reduced but it would have been better to have reduced by only 12.5mcg to see what effect that would have, but doctors don't think like that they always seem to do 25mcg dose changes.
Now with your TSH at 4 you really do need a dose increase, if GP doesn't want to increase by 25mcg then see if he will compromise by giving you an extra 12.5mcg, you can always cut tablets or alternate the amounts to give the required dose. Then retest 6-8 weeks later to check your levels. See if you can also get FT3 tested but to be honest it's doubtful which is why so many of us here do private tests.
You are very welcome to ask as many questions as you like, we are all here to help.
For future information, always advised here, when having thyroid tests:
* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day.
In fact, 9am is the perfect time, see first graph here, it shows TSH is highest around midnight - 4am (when we can't get a blood draw), then lowers, next high is at 9am then lowers before it starts it's climb again about 9pm:
If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.
* Nothing to eat or drink except water before the test - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Certain foods may lower TSH, caffeine containing drinks affect TSH.
* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.
* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).
These are patient to patient tips which we don't discuss with phlebotomists or doctors.
Also, take your Levo on an empty stomach, one hour before or two hours after food, with a glass of water only, no tea, coffee, milk, etc, and water only for an hour either side, as absorption will be affected. Take any other medication and supplements 2 hours away from Levo, some need 4 hours, as again absorption of Levo will be affected.
Thanks for your response SlowDragon, my dose is a 25mg by Mercury pharmaceuticals, and a 50mg dose by accord. They ran out of 75mg tablets. I'm not sure what brand I was on when taking 100mg.
They haven't tested me for vitamin D, folate, ferritin and B12 levels, so I'll request these tests too.
I'm currently taking magnesium glycinate, zinc, selenium (Brazil nuts), agnus castus for PMS, multivitamin (Raw one for women, garden of life brand), NAC, vit B6, L-Theanine.
Thanks ever so much, appreciate the links to the guidelines . That should help fight my cause. I'll keep you posted! Have a great weekend Slow Dragon. X
Seaside Susie has given some great advice. One other thing you could check to see if you’re a poor converter is a DIO2 gene test. You can get this done privately as promoted on this forum through Regenerus Laboratories. It costs about £165 for the test and a person to call you to interpret the result. I had this done after years of struggling on Levothyroxine. I wish I’d got the test done much sooner as it would have answered my question. My GP at the time was useless. If you have the faulty gene DIO2 this means you struggle to convert Levothyroxine T4 to the most important hormone T3. I was positive and took the result to my GP. He scanned it onto my NHS file. I went private and got a T3 three month trial which was hugely successful for myself. I then managed to get T3 off my NHS Endo. We try to aim for a TSH around 1.00 with your own optimal T4 and T3 levels to achieve this. I have managed to keep my TSH around 1.00 since starting T3 combined with liquid Levothyroxine. My T4 levels are at the low end of the range and my T3 level is mid range. This is prior into ingesting my medications on the day of the blood draw. I’ve never felt so energetic and youthful in many years.
In terms of how often should you get your bloods checked….. I get mine checked by my GP every 3 months without fail. I get B12 injections and use the same appointment to get a host of bloods done.
Thank you McPammy, that's a huge help. Honestly, I'm amazed how informative this forum has been and thank you all massively. It's been a nightmare navigating this, but now I'm armed with information I should be able to fight my cause. Thank you!
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