I hope you're all well. I just had yet another GP telling me I need a decrease in T4 and possibly T3 as well, because my TSH is suppressed. It was suppressed; it was 0.008. My FT4, however, is 7.9 (9.0-19.0). They didn't test T3, despite the nurse writing on the form that I take T3.
I'm feeling the worst ever ATM, I'm really struggling with my weight, my skin is so dry, I'm terribly constipated and I feel so depressed by it all. It's been a decade of battling.
Can anyone help me with medical literature about central hypothyroidism, its treatment and anything I can take to doctor to try and get the help I need? I will email to ask for an updated list of endos. I haven't been able to afford it but start a new job soon and will be in a better position.
I'm feeling so despondent.
I take 150 levo and 20 T3.
I've asked whether I can have liquid T4, which is why they retested me, only to now tell me I am overmedicated.
Kate
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kittywatvans
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Ps the last time I saw the endocrinologist, she told me the only figure that mattered was TSH and so I'm overmedicated if it is suppressed. My T4 at that time was very low in range.
Kitty you can't consider central hypo because you are on combo. Taking liothyronine t3 suppresses TSH so your results are consistent with that. Lio also tends to slightly lower ft4.What you are possibly needing is an increase in either levo or lio but without a ft3 result you won't know.
Then like thousands of U.K. patients you need to get FULL thyroid testing done
Just testing TSH is completely and utterly inadequate and especially if on T3 as well
Presumably your T3 is prescribed?
TSH is almost always suppressed on any dose of T3
Do you always get same brand levothyroxine
Do you take levothyroxine waking or bedtime?
How do you take your T3……as single dose or 2 or 3 smaller split dose?
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
What vitamin supplements are you currently taking….if any
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
How much T3 are you currently taking
Do you normally split the dose
Even if you don’t normally split dose ….
Day before test split dose of T3 into 3 smaller doses, taking at approx 8 hour intervals, with last dose 8-12 hours before test
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Thank you. I've already ordered the Monitormyhealth full test, so I will do that next. I've started taking my medication at night. Yes, T3 is prescribed but the endocrinologist has said there is no possibility of any increase, as 20mg is the max amount permitted. I don't split it but can try that if you think it would be better. I did recently see that it may work better split.
I did see an improvement with 2 months of Thyrogold last year, which was then globally out of stock for almost a year and I've just managed to get two pots again.
I'm not sure how to proceed in all honesty. I used to be on 175mg of levothyroxine and it's never had any effect on me at all. I mean, I don't notice anything if I take nothing, or if I take double. My husband feels every tiny change in dose immediately. I've only ever been given a generic levothyroxine, I've never tried a different one. I've asked about trying liquid capsules or liquid level but that's what triggered the retest.
Which brand of levothyroxine are you currently taking.- It says NorthStar on the box
Do you always get same brand
-Yes
Do you always take levothyroxine on empty stomach and then nothing apart from water for at least an hour after
-Yes
Many people find taking levothyroxine at bedtime can be more convenient and possibly more effective
-I've recently started this.
No other medications or supplements within 2 hours, some like iron, vitamin D, magnesium, HRT must be minimum 4 hours away
-Yes, always several hours apart
Essential to test vitamin levels
When were vitamin levels last tested
- I actually don't know. I'm prescribed B12 but since going over to tablets from injections, they think I might have a problem absorbing. They won't retest for a while though to see if my levels are dropping.
Have you had coeliac blood test done
-yes but it was pointless, as I've been gluten free since 2007. Endo told me to eat wheat for seven days before the test, but I get so unwell that I could only face three. It was horrible. Obviously it came back negative. I understand there's a genetic test that can help establish coeliac disease.
I did try buying Tiromel last year from an online pharmacy but it doesn't appear to do anything at all, so I'm not sure if I was "had"!! I don't take it anymore.
Do you happen to know what your blood test results were on diagnosis? Were you diagnosed with central hypo to begin with? It's difficult to know once you're taking thyroid hormone replacement (levo, etc.), so your diagnosis results are important to know.
But, as has already been said, as you are taking T3, your TSH will be very low, anyway, whether you have Central Hypo or Primary Hypo, and that's what you need to impress on these idiot doctors!
I believe I was diagnosed with a TSH of 5.4 (top was about 4.0, so not horrendous) and my FT4 was under range, but it's going back a bit now and the ranges have changed. I also had the usual symptoms. I think the FT4 was around 10 or 11 with a range of 12.0-22.0 at the time. Now it's 7.9 (9-19).
Do you know any sources which I can show to my GP, which show clearly that it is a standard thing for T3 treatment to artificially suppressed TSH, which is why they can't rely on it? I feel like they just ignore everything I say so I now need to present a dossier with reputable medical sources so they can't possibly ignore it.
I've said it until I'm blue in the face and the endocrinologist and GPs just smile condescendingly and say, "if your TSH is suppressed, the only reason is over -medication and you're effectively hyperthyroid." Even when i say "but what about my T4?" They just repeat the information about TSH and say that's all that matters. It makes me want to scream or cry.
They've said it repeatedly in the last 12 months as most of my blood tests have a suppressed TSH and very low FT4. On the rare occasions they've tested T3 it seems the levels are middling to good. I'm so far removed from hyperthyroidism it's insane. My husband was hyperthyroid and had the iodine so is now hypo. I know the difference.
I believe I was diagnosed with a TSH of 5.4 (top was about 4.0, so not horrendous) and my FT4 was under range, but it's going back a bit now and the ranges have changed.
Doesn't matter what the ranges were or are, under-range is under-range. You can only go by the range that was on that particular test. So, under-range FT4 and a TSH of only 5.4 does sound like Central Hypo. But, was it ever mentioned in your records? Or did anybody use those words at the time.
I don't have any sources you can show your GP about suppressed TSH on T3, no. Hasn't SlowDragon given you something about it above in her list of links? However, if it is noted that you have Central Hypo, I can dig you out some information on that, if you like.
I know, doctors these days are spectacularly ignorant about thyroid. It isn't even logical to think that a TSH test will tell you all you need to know about thyroid status, but they appear to be incapable of thinking it through for themselves. They just parrot the party line like robots. So sad.
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Suppressed TSH before surgery.I saw my lovely GP yesterday armed with a few printouts concerning suppressed TSH when treating hypothyroidism
HELP PLEASE. I need good reasons on why my Endo should not pull the plug on my T3 treatment. 
Endo has suggested DEXA scan due to suppressed TSH 
ELECTIVE SURGERY
