Below are my hospital blood results. I confirm that I took my T4 24 hours before and my last T3 dose about 9.5hours before my bloods at 8.30am.
Sample (Blood) Collected 16 Mar 2021 08:46 Received 16 Mar 2021
B12, Folate & Ferritin Profile
Ferritin 31 ug/L (NR 23 – 300)
Vitamin B12 548 ng/L (NR 187 – 883)
Serum Folate 11.3 ug/L (NR 2.7 - 15.0)
TSH * <0.01 mU/L (NR 0.35 - 3.50)
Free T4 12.8 pmol/L (NR 7.5 - 21.1)
Free T3 * 6.3 pmol/L (NR 3.8 - 6.0)
Endo’s email states;
As you can see your TSH is low or supressed this means that your pituitary is sensing how much thyroid hormone in the body and telling your thyroid to stop making thyroid hormone. This TSH is fully supressed ie totally undetectable. This we know this is associated with increased chance of thin bones (osteoporosis) and some arrhythmias (atrial fibrillation).
As explained during your consultation I would advise a decrease in your total thyroid hormone dose. Ie either your levothyroxine (T4) from 100mcg to 75mcg or your liothyronine 25mcg to 20mcg.
My question- he wants my TSH to be 0.01 but this means reducing something as he has stated.
I am still tired in the morning but I think it’s due to my ferritin being low as I stopped taking my iron tablets but I am now back on them.
I do not want to reduce any of my dose but as you can see I am being warned of the dangers. I did ask for a bone scan but was told they only offer them in clinic. Can’t be that worried then.
Would any of you fight this and keep at the same dose even though I’ve been warned? Also should I worry I’m slightly over my FT3 range?
Thanks in advance
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Lindsayf
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Personally, because I know where my levels suit me best, I would reduce T3 by 5mcg first, then increase Levo to try and get FT4 further up into range then repeat test 8 weeks after last dose change. I need both balanced around 60-70% through range but some people on combination hormone replacement are fine with a lowish FT4 as long as FT3 is in the upper part of it's range. You need to find what's optimal for you and it can take a lot of tweaking.
Your low ferritin level isn't helping, it needs a lot of work. It's said that ferritin needs to be at least 70 for thyroid hormone to work properly and some experts say that the optimal ferritin level for thyroid function is between 90-110 ng/ml.
As you're taking iron tablets are you having regular iron panels to check your serum iron level and saturation %? You don't want these going too high, too much iron is as bad as too little. Sometimes it only the ferritin that needs improving not the actual iron.
I’m taking 25mcg of T3 so I could take 18.75mcg but there is no way he will give me more T4 as he is only worried about getting my TSH up. If anyone know where I can buy T4 please can you PM me?
He wanted me to reduce my T4 to 75mcg but won’t that being my FT4 down and still suppress my TSH?
I’ve had full bloods done and he said my red blood cells are normal size. I’ve started my iron tablets again. I don’t know if I’ve ever had a iron panel check
He wanted me to reduce my T4 to 75mcg but won’t that being my FT4 down and still suppress my TSH?
Reducing T4 will reduce your FT4 level. It's the fact that you take T3 that is suppressing TSH, that's just what it does.
As he has suggested reducing either Levo or T3, I would go for reducing T3 to get your FT3 back into range. Retest after 6-8 weeks. See how you feel and possibly reassess your dose of meds then.
If you want to self source Levo I suggest you make a new post asking for recommendations of a supplier, your question probably wont be seen in this thread. As we can't name suppliers on the forum, ask for members to send you information in a private message. Your post will be closed to replies but will remain visible.
Iron panel consists of Ferritin, Serum Iron, Transferrin Saturation % and Total Iron Binding Capacity.
Optimal levels:
Serum iron: 55 to 70% of the range, higher end for men
Saturation: optimal is 35 to 45%, higher end for men
If higher then taking iron tablets isn't a good idea.
So even if I reduced my T4 to 75mcg that would not bring my TSH levels up?
Unlikely as you're taking T3 and T3 lowers, even suppresses TSH, it's just what it does.
Is there any known cases of people having heart issues or osteoporosis caused by a suppressed TSH?
That's a question that is impossible for me to answer I'm afraid. But it's said not to be the case in hypOthyroidism although for atrial fibrilation, a suppressed TSH and over range FT3 might be a factor when the patient is hypErthyroid.
This article about Myths of Hypothyroidism is on ThyroidUK's website and one of them is about the myth that a suppressed TSH leads to Osteoporosis
Also, Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional magazine for doctors):
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).*"
He's unlikely to say that if there is evidence it will cause osteoporisis or AF.
Thanks for that I’m so confused and stressed over it. I’m so scared to feel sick and tired again. He is only concerned about the TSH so if I reduce my T3 down to 18.75 it’s not going to increase my TSH. Therefore do I reduce my T4 down to 75mcg and keep my T3 at 25mcg. By reducing my T4 that will hopefully increase my TSH. I just want to bury my head in the sand and be left alone.
Reducing your Levo is very unlikely to increase your TSH, as I said it's taking T3 that lowers and even suppresses TSH so if you continue to take your T3 your TSH will stay low.
You have an over range FT3 and a low in range FT4. My suggestion is to get your FT3 back into range and you'll do that by reducing your dose of T3. Retest after 6-8 weeks to check your levels and see how you feel.
I assume you are self sourcing T3? How did this come about? Presumably the endo is happy for you to take it? If so I would have thought he knows what happens to TSH when you take T3? If he knows anything about taking T3 then he should know that it lowers TSH.
Sorry, I find it so confusing. I’ll reduce my T3 dose down and re test in 8 weeks.
He wasn’t bothered about my FT3 range being over and it was me that suggested lowering it as I didn’t want him to touch my T4 as I get that from the NHS. He said that being over medicated is what is making my TSH suppressed and that’s why I need to reduce my T4.
I buy my T3 from abroad. He said that my FT3 range would be higher as I’ve taken my tablets before my blood test! At that point I just though, for goodness sake! I could even be bothered to explain that I don’t take my meds before a blood test.
Your endo is making several mistakes, here. For a start, a blood test does just what it says: it measures the level of hormone in the blood. But, thyroid hormone in the blood doesn't do anything. It's only when it gets into the cells that it is activated. So, he is assuming - if he even thinks about it at all - that all the hormone in your blood is getting into the cells. And, he just can't do that. It could be that very little is actually getting into the cells. And, there's no way of testing that, we just have to go by symptoms.
He's also assuming that the top and bottom numbers of a range are set in stone. They aren't. They're just a rough guide. If you don't have any over-medicated symptoms, then it is highly unlikely that you are over-medicated.
And, he's assuming that the TSH tells him all he needs to know. It doesn't. It's suppressed because the pituitary has sensed that there's now enough thyroid hormone in the blood - not too much. It doesn't know if there's too much. And, even if it did, the TSH cannot go into negative figures. Zero is zero, and it's zero because you're taking T3, and the pituitary thinks 'fine, I can take it easy, now', and stops producing TSH to stimulate the thyroid. That is totally different to saying 'stop making thyroid hormone'. It could just be saying 'carry on as you are'. But, this pituitary/thyroid dialogue is all in his head.
And, by telling you that by having a suppressed TSH you risk osteoporosis and heart attack, he's just showing he doesn't know much about thyroid. He's confusing a suppressed TSH in Graves, where the FT3 is extremely high, and a hypo patient treated with T3, whose FT3 is just a tad over-range, and a suppressed TSH. They are not the same thing. The consequences are not the same. But, he's never bothered to think it through for himself. That's what he learned in med school, and by parroting it he's taking the easy way out. He's never questioned if it's actually true.
So, if you feel good on your dose, personally, I wouldn't change a thing! The TSH doesn't make you feel anything. It's the T3 that causes symptoms if it's too high or too low. So, if you don't have symptoms, I would take it that you're on the right dose.
I’ve decided to stick to my current dose, I’m very slightly over range on T3 but I don’t think I have over active symptoms. I don’t have heart palpitations, I’m not losing weight, I don’t feel thirsty all the time and looking at the NHS symptoms for over active I have a couple but they are the same for under active. I am tired and I find it hard to get out of bed in the mornings but I always have. I have anxiety sometimes but I’ve had that for years and it’s got worse the older I have got.
I read Dr Lindner’s website (hormone restoration) and what a breath of fresh air. Why can’t all Dr be like that. It was lovely to read the having a suppressed TSH is fine when on T3 and Drs look at only THS and nothing else which is wrong.
I asked for a paper copy of my results and my VIT D is 49 which is insufficient as the range is (50 - 120) that with my ferritin also being low this is why I think I’m tried. He didn’t even mention my VIT D!
I’ve got a telephone appointment with him in June and I’m going to be strong and keep the information about suppressed TSH and say I’m not dropping. I’m happy to have a scan of my heart and bones if they are that concerned but I am not worried.
Thank goodness for this forum and all the wonderful people who help. I couldn’t imagined doing this alone
Having trouble getting out of bed in the morning, can be an indication that you have low cortisol. And, anxiety can be a hypo symptom, so maybe you've been hypo for a lot longer than you think. Some people just do need their FT3 a little over-range and are none the worse for it. So, if that's what you need, then go for it! Good luck.
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