Endocrinologist appointment today that’s got me doubting and feeling confused…..

[Alternatively]

I’m just back from a consultation with a private Endocrinologist that I had high hopes for.

The reason for my visit was to discuss my calcium and PTH levels which are consistently on the low side. She seemed so thorough and interested and on the ball, until she saw that my TSH was suppressed and that I was self sourcing T3. Feeling despondent now because I thought she was more progressive, but she said I should reduce T3 until I get a blood result showing levels of 0.3 or above, even if it meant completely stopping T3, because being suppressed was bad for my bones.

Are there any Endocrinologists anywhere that don’t panic at a suppressed TSH when on T 3 medication? Maybe there is something to be worried about?

I showed her my results before I started taking T3 which were showing T4 at 85% through the range and T3 at 29.7% through the range. I thought this showed I was a poor converter but she said a T3 figure such as mine was to be expected in someone of 67 years old, even if they had a healthy thyroid.

I don’t know what to think now, is suppressed TSH bad for my bones? And is a T3 level at 29% through the range sufficient for my age?

The strange thing is that before the operation 18 months ago, (to remove a lump on my thyroid that made me hypo), I felt really well with no symptoms, and my levels then were only:

T4 - 14.8. 41% through the range

T3 - 5.1. 53% through the range

TSH - 1.59

And so I’m wondering , maybe do I only need to aim for these levels now??

Would love your thoughts, Feeling confused 🤷‍♀️

[SlowDragon Administrator]

calcium and PTH levels which are consistently on the low side.

What is your most recent vitamin D result

How much vitamin D are you taking

Are you taking vitamin K2 and magnesium as well

What are your most recent Ft4 and Ft3

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

T3 ….day before test split T3 as 2 or 3 smaller doses spread through the day, with last dose approximately 8-12 hours before test

[Alternatively in reply to SlowDragon]

Hi SlowDragon,

Ever since I joined this forum, I always get my bloods done as you mentioned.

My results just 4 weeks ago were :

T4 17.3. (12 - 22)

T3. 5.2. (3.1 - 6.8)

Vit D. 114

Magnesium 0.90. (0.7 - 1.0)

Ferritin. 45

Folate 20

B12. 1097 (197 - 771)

Negative antibodies.

I do take vitamin K2 supplements daily, plus vitamin D and magnesium supplements and calcium and boron supplements.

I’ve since increased my Levothyroxine back to 75mcg per day and kept my T3 medication at 7.5mcg Will test again in 2/3 weeks time.

I know my Ferritin level is poor and I’ve been trying to increase it for months through diet, but being vegetarian doesn’t help. Apparently my other iron levels are good and so I didn’t think I could take any form of iron tablets?? My transferrin saturation was very good.

Even though I can’t actually put meat in my mouth, I would not mind swallowing a heme iron supplement if it would bring my ferritin up.

I am currently symptomatic. My hypothyroidism symptoms I think are unusual in that it just affects my stomach, giving me heartburn and nausea, plus a slow metabolism, (not so unusual ). I don’t get fatigue or a fuzzy head or any of the other usual symptoms.

I’ve been trying to titrate my dose after blood tests at 6 weeks and the symptoms go away for a while, then they come back, so I can’t pinpoint at what dosage my symptoms go away.

For my calcium levels to stay just above the lower limit, I have to have 2000mg calcium from a combination of supplements and food and drink daily. The consultant yesterday said that she thought this was preferable to prescribing Calcitriol.

Would be grateful to know your thoughts on the above if you have a couple of minutes please?

[SlowDragon Administrator in reply to Alternatively]

Free T4 (fT4) 17.3 pmol/L (12 - 22) 53.0%

Free T3 (fT3) 5.2 pmol/L (3.1 - 6.8) 56.8%

How much were you taking for these results above

How long on that dose

Which brand levothyroxine and which brand T3

I’ve since increased my Levothyroxine back to 75mcg per day and kept my T3 medication at 7.5mcg Will test again in 2/3 weeks time.

Retest after 8-12 weeks when fine tuning dose

I know my Ferritin level is poor and I’ve been trying to increase it for months through diet, but being vegetarian doesn’t help. Apparently my other iron levels are good and so I didn’t think I could take any form of iron tablets?? My transferrin saturation was very good.

yes correct you can only improve by iron rich foods in this situation

[Alternatively in reply to SlowDragon]

For those thyroid results I was taking 62.5mcg Levothyroxine and 7.5 mcg T3 daily. Levo brands are 50 mcg Accord and half a 25mcg Mercury Pharma.

T3 brand is Sigmapharm 5mcg

I was only on that dose for six weeks before I tested.

[SlowDragon Administrator in reply to Alternatively]

That’s a low dose Levo unless you’re very petite

How much Levo were you taking BEFORE adding T3

LOW FT3 can be a cause of osteoporosis

thyroidpatients.ca/2018/07/...

Osteoporosis and iron deficiency

healthunlocked.com/thyroidu...

[Alternatively in reply to SlowDragon]

Hi SlowDragon

Before adding T3 my Levo dose was 75mcg.

As soon as I added T3 my TSH went down to 0.01 and has stayed there

I weigh 58/59kg.

Thankyou for the links on iron and low FT3. Do you think I Should be aiming for 70% through the range for both FT3 and FT4?

Or, as my T3 level was only 53% through the range when I felt well before becoming hypothyroid, might this be sufficient now that I am being medicated?

[SlowDragon Administrator in reply to Alternatively]

Before adding T3 my Levo dose was 75mcg.

So likely a bit under medicated……guidelines suggest for 58/59kg …..likely to need around 94mcg when on JUST levothyroxine

See what your results show at next test

[Brightness14]

I aim for exactly the levels I felt well with. My TSH has been supressed since I had my thyroid removed back in2016. I am 78 years old and my bones are perfect. DEXA scan states that.

[Alternatively in reply to Brightness14]

That’s really interesting Brightness 14!! Thanks for letting me know that! You are so lucky to have perfect bones! Do you mean you aim for the levels you had before your thyroid was removed?

[Brightness14 in reply to Alternatively]

No I am not like others on here I never had thyroid problems before only since 2015 when a lump on the thyroid moved my trachea, in fact I only just knew there was a thyroid in the body. What I meant was after I went onto NDT and felt really well, I aimed for the same blood test results now as then. When I left hospital after my thyroidectomy my professor surgeon gave me a letter stating that my TSH should always be supressed and I have kept to that. I don't have any allergies or Hashis like most on the site.

I had always been so fit and heathy before, good diet never over weight non smoker, and a runner and swimmer that has probably helped me. Good Luck with your answers

[Dandelions]

You don’t seem to have had too many answers.

There’s lots of info on this forum about surpressed TSH and at which levels you should start to worry. Maybe try a search on this forum?

Is there anything in your vade mecum helvella ?

[helvella in reply to Dandelions]

No - not something I've really covered! Sorry.

[Tina_Maria]

Physicians always go into a huff when they see a low or suppressed TSH and do not understand that T3 medication will do that. A suppressed TSH will only cause an accelerated bone turnover and increases the risk of osteoporosis IF your T4 and T3 are grossly over range. A suppressed TSH alone cannot do that, as it is a hormone signal from the pituitary gland. It is the actual thyroid hormones that will cause the increased metabolism and therefore levels significantly above the reference range can lead to a higher bone turnover, which over time can lead to osteoporosis.

However, your thyroid hormones are in the middle of the range, so the suppressed TSH is just a result of the T3 supplementation. And your symptoms are actually indicative of having LOW thyroid hormones, so I would actually say that you would need an increase in medication. Most patients feel well when their T4 and T3 are between 60-80% through the range. My TSH is also suppressed (and has been from the start). I had discussions with physicians about that until the cows come home, but I will not lower my meds, as this will only result in my T4 and T3 getting lower and does nothing to my TSH. I am approaching 60 now and my bones are very healthy, as I can exercise and do strength training, which supports my bone structure. If I am on a lower dose, I cannot exercise and keep fit. So what is more dangerous, not being able to exercise and lose muscle and bone mass, or run a suppressed TSH and being able to exercise and support the bones? I am voting for the latter!

[Alternatively in reply to Tina_Maria]

Thankyou Tina-Maria. That’s very reassuring. I had a wobble of confidence in what I thought I knew to be correct re suppressed TSH (like you said above), because I had been so sure that this time I had chosen an Endocrinologist that I could trust to give me the correct information. But it seems not when it comes to my suppressed TSH levels anyway, and what percentage through the range T3 levels I should aim for. Although I really went to see her for advice re my calcium and pth levels, she asked for my thyroid levels. Anyway, I won’t need to make any more appointments with her now.

[jgelliss in reply to Tina_Maria]

I'm following this interesting thread. Can you tell me please what strength thyroid T4 and T3 you are dosing with? There is to much of scare mongering when one needs more thyroid dose to feel well. One will hear that it's not good for the bones or for the heart. I wish this would stop. You need what you need to feel optimum.

[Tina_Maria in reply to jgelliss]

My TSH has always been very low or suppressed, even on previous doses since my diagnosis, which was 21 years ago now. I am on levothyroxine only 100 mcg (which is in line with 1.6 mcg levothyroxine per kg of weight - mine is 58kg).

Around 6 years ago, my GP insisted to reduce my dose due to the suppressed TSH, I only lowered the dose by 12.5mcg, but within weeks I became very unwell. The usual symptoms, very tired and exhausted and I could not exercise. My TSH was still suppressed but the endocrinologist insisted I went down further to 75mcg. Well, if I complied all the way, I would probably be on a dose of 25mcg now! After feeling rotten for about 3 months, I went back to 100 mcg and slowly improved. After finding this forum, I also worked on my vitamins and minerals and since optimising them, my T4 is now on top of the range or slightly over and my T3 is around 65% through the range. I feel good this way and can function well. I am doing scientific work, so I need my faculties sharp. I also do quite a bit of exercise and strength training as well and enjoy it immensely, but I cannot do this when I am under-treated.

I am following Hoermann & Midgely:

pmc.ncbi.nlm.nih.gov/articl...

'Together these findings question, the current diagnostic use of the TSH response as a reliable mirror of thyroid status. They demand a conceptional evolution of thyroid regulation to underpin a more differentiated clinical use.'

In other words, in thyroid disease, the TSH-FT4 correlation is broken, so TSH is not a good gage when on therapy, and FT4 and FT3 should guide treatment.

Thyroid treatment is very much a fine-tuned, individual process; what works for someone might not work for someone else. We do know however how we feel, and if something does not feel right, it usually isn't.

[jgelliss in reply to Tina_Maria]

To begin with TSH is a pituitary marker and not a Thyroid marker.Personally I was missing in action when I started my thyroid journey . I joined this wonderful Forum. I read as much as I can and learned that knowledge is power. Dr's never did well by me prior and after my TT. I personally dose according to what I feel makes me feel Optimal. Ranges don't work for me. But what I feel does.

Who are you going to Believe?

Best wishes for sorting yourself out and feeling your Optimal.

[waveylines]

A very wise zendocri logistics told me a few years back that do long as you keep your Ft4 & Ft3 in range no harm eill be done. My TSH is very supressed has been for years as I'm on a ndt. These days when someone makes grand statements like she did I always ask for the body of research to prove it. It doesnt exist because it's not true!!

[tattybogle]

healthunlocked.com/thyroidu... useful-evidence-that-tsh-between-0.04-0.4-has-no-increased-risk-to-patients-on-levothyroxine-updated-new-study-does-show-small-risk

healthunlocked.com/thyroidu.... tsh-is-just-the-opinion-of-your-pituitary-about-your-dose-but-your-pituitarys-opinion-is-a-bit-warped-once-you-take-thyroid-hormone.

[Lottyplum]

hi there! I see a private Endo, have had suppressed TSH for years and he is of the view that quality of life is more important. No matter what I’ve done to address the suppressed TSH nothing works! I doubt it will ever rise as gone on holiday! I’m 75 yrs old and had total thyroidectomy over 40 yrs ago but didn’t know I was a poor converter or anyth8ng about T3 til I found this forum and private Endo! I’m now on T4/T3 combo and life is sweet!

[Alternatively in reply to Lottyplum]

My TSH is 0.01 by the way

Thankyou for telling me about your experience Lottyplum. It helps so much to hear from others going through the same thing, I am so grateful to have found this amazing forum.

[Lottyplum in reply to Alternatively]

You will learn so much here; I know I have and because of this share the information with family, esp my son and daughter, as my mum was in Levothyroxine in her later years and keep an eye on their health even though they are married with their own families. Keep learning as it will help you navigate your thyroid journey - and you can always ask questions!😎

[Star13]

My TSH has been suppressed forever too and finally I have a letter on file from a consultant stating that I should not be dosed on TSH! That followed a 2/3 year fight with a hospital consultant who was basically blackmailing me with the threat of taking away my T3 if I did no reduce my T4 dose due to my TSH. I was never examined or asked about symptoms and rarely were blood tests done. I did private ones and when my FT4 was down to 3 in a range of 12-24 and FT3 also 3 despite taking it, I stood up to her and said no more I’m not reducing further (at that point 50mcg) and made a formal complaint and asked to be treated elsewhere.

I’m now on 100mcg T4 and 40mcg T3 and at no point all through all of that did my TSH budge one bit! So had she carried on waiting for that to happen I’d be dead by now!

As for bones, I have regular dexa scans and mine are still fine.

[Alternatively in reply to Star13]

Goodness Star13, what a journey you’ve had!! Thankyou for sharing that with me! Just shows you about these Endocrinologists doesn’t it!! And it’s so reassuring to hear that your bones haven’t been affected, I feel better now. (My TSH is 0.01).

[Judithdalston]

I’m someone who for years has a suppressed TSH of c.0.02, which had worried the GP insisting I reduce my Levo.from 100 to 75 mcg , fortunately my T3 ( 3x5 mcg) prescription is from a private endo. and he can’t touch that. But in GP’s concern he referred me to an NHS endo., the first one I have ever seen in 20+ years. He went through over 22 years of thyroid blood test results, and although he said he would have been happier with the TSH being a bit higher, he thought I needed the 100/15 combo. His only suggestion was see if changing the 15 mcg from 3 doses to 2, might make a difference to TSH….tried this week and felt like I needed the mid afternoon boost to stop falling asleep at 5-6 pm! Perhaps better to experiment in later spring…

[Alternatively in reply to Judithdalston]

Thankyou Judith for replying to me. My TSH is 0.01. Sounds like you were lucky with the NHS Endo that you saw!!