Suppressed TSH Fears

[janey1234]

Following all the great advice that I have received on here over the past 2 1/2 years I am now in a good place and feeling really well again (touch wood). I have also managed to lose weight and am almost back to a healthy BMI state with my weight. However, while directing a 'newbie' to the useful infomation on the TUK website I noticed that there was information for those having a supressed TSH (less than 0.03) being at greater risk of heart disease, abnormal heartbeat, Osteo', etc

" Dr A Toft writes in the BMA book “Understanding Thyroid Disorders”, “The consensus is that enough should be given to ensure that levels of T4 in the blood are at the upper limit of normal or slightly elevated and those of TSH at the lower limit of normal, or in some patients undetectable.” He also states, “Although, by taking excessive thyroxine, a sense of well-being, increased energy and even weight loss may be achieved in the short term, there are long-term dangers to the heart and a possibility of increasing the rate of bone thinning and therefore encouraging the development of osteoporosis."

There has been lots of mentions of why the TSH is important by one particular member on this forum just lately which quite frankly has scared me and left me doubting what I'm doing or my understanding on how all this works.

I have recently increased my Levo from 125 to 150 (2 weeks ago) in an attempt to raise my FT4 and FT3 but the recent TSH talk has made me regret my decision to request an increase from 125 to 150 and so I want to go back to taking 125 and then try dropping to 100 (or 100 /125 alternate days) and hope that my TSH will return to a non-suppressed state. I know this will probably mess up my FT4 & struggling FT3 levels but to be honest I don't know what's best anymore. I don't know whether to continue with a suppressed TSH and good FT4 / FT3 levels & feel great but put myself at a greater risk of heart failure or eliminate the heart risks, etc and go backwards with my Hypo' journey with lower FT4 & FT3 results. Both options suck.

These are my last 3 test results ...

MAY 2017 (Result on 100 / 125 Levo alternate days)

TSH 0.23 (0.27 - 4.2)

FT4 16.55 (12 - 22)

FT3 4.29 (3.1 - 6.8)

DECEMBER 2017 (Result on 125 Levo)

TSH 0.044

FT4 16.9

FT3 4.6

APRIL 2018 (Result on 125 Levo)

TSH 0.048

FT4 19.4

FT3 4.19

Bearing in mind that these results are taken first thing (as recommended here) for the highest TSH result, my TSH is probably even lower than these figures mentioned, later on in the day, therefore very suppressed.

I always thought that the TSH was a signal to tell the thyroid to produce T4 & T3 and Levo replaced what the thyroid was struggling to churn out T4-wise and then that was converted in different parts of the body into T3 for all the cells. If that's the case, how the heck is the TSH causing the heart issues if T4 & T3 levels are still not particulary brilliant or over range? I am so confused.🤔

My questions are...

1. I have been trying 150 Levo for 2 weeks now (from 125 in an attempt to raise my FT4 & FT3 levels) but all this suppressed TSH talk that has scared me, I have now gone back to 125. How long should I be back on 125 before reducing again to 100 or 100 / 125 alternate days? (On 100 / 125 my TSH wasn't suppressed)

2. If on 100 or 100/125 Levo my FT4 & FT3 drops ,which I imagine they will, how do I raise my FT3 levels without suppressing my TSH again? I assume that adding T3 means the 'signal' isn't needed again so just goes low or suppressed.

If anyone has any suggestions on what I should do then I would be very grateful. With all the help and advice here I have finally made it to a really good place. I dread going back but I fear heart failure more😯

EDITED TO ADD...

TOTAL T4 106 (59 - 154)

TPO 199 (was origianlly 1175)

ACTIVE B12 186 (25.1- 165)

FOLATE 8.98 (2.91 - 50) being addressed with Thorne Basic B Complex

FERRITIN 116 (13-150)

VITAMIN D 141

I've been gluten free for almost 2yrs and it has made a HUGE difference to my wellbeing.

Thank you x

[diogenes Remembering]

From your results there is no problem. Though the TSH range for healthy people is about 0.3-4, this does NOT apply for people with no thyroid on T4. The Japanese workers Ito et al have demonstrated that "euthyroid" levels of markers for thyroid activity in T4 patients with little or no thyroid give TSH ranging from 0.03-0.5, which you show perfectly. As also your FT4 and FT3 are normal you seem perfectly well treated and no alteration should be needed, unless you do not feel well.

[janey1234 in reply to diogenes]

Thank you. My fears were initially raised following paragraphs on the TUK website about suppressed TSH. I do feel well at the moment and would have ridden off into the hills, at peace with the world, if I hadn't read the website articles. Thank you for your reassurance. I will continue with 125 Levo for now and saddle up ☺

[SlowDragon Administrator]

TSH is not really relevant on Levothyroxine. The most important thing is to have FT4 and FT3 at adequate levels

Your April results show low FT3. So you are likely a poor converter.

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"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)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

[e-mail]

Professor Toft recent article saying, T3 may be necessary for many. Otherwise we need high FT4 and suppressed TSH in order to have high enough FT3

rcpe.ac.uk/sites/default/fi...

What are your vitamin levels like? Can you add results and ranges for vitamin D, folate, ferritin and B12

Do you have Hashimoto's?

Link saying TSH often needs to be suppressed

jeffreydachmd.com/2016/10/a...

Info saying Suppressed a TSH not a problem

heart.bmj.com/content/84/4/455

Long term study of T3 or NDT - no adverse issues

ncbi.nlm.nih.gov/pubmed/298...

Unlikely to increase osteoporosis

ncbi.nlm.nih.gov/pubmed/825...

[janey1234 in reply to SlowDragon]

Have added vitamin results SlowDragon . I've always used that Dr Toft quote and up until lately 'worked by it'. I even bought his BMA book following recommendations here but I have noticed that even on the TUK website it talks about suppressed TSH being an issue. I will have a read of the links you have provided...thank you.

My GP isn't trying to get me to reduce, in fact I have shown them all the advice given here after each posting and they have agreed with all of the increases to date (we do this by letter rather than face to face). My concern was raised following comments from another member on several other posts regarding TSH levels, which didn't appear to necessarilly agree with the guidance I'd followed (unless I was misunderstanding) & the TUK website.

Following my last post and the advice given I decided to try 1 more Levo increase from 125 to 150 to see if that raised my FT3 levels. If that failed I was going to go down the T3 route either alone or with my GP (if they agreed to help). I was only 2 weeks in to the Levo increase when I saw all of this info about suppressed TSH (which is where I am today).

[SlowDragon Administrator in reply to janey1234]

Your vitamin levels are pretty good, and obviously working on improving with B complex.

Obviously adding T3 almost always suppresses TSH. But keeps FT4 and FT3 within range

Perhaps look at DIO2 gene test

thyroiduk.org.uk/tuk/testin...

[janey1234 in reply to SlowDragon]

Thank you. That first article was very interesting. I think I will stick at 125 levo for now and if I start to feel unwell, look into the D102 test and taking it from there. Lots more to read...that's my evening sorted 🙂

[janey1234 in reply to SlowDragon]

Sorry, just 1 more question ...why do TUK not mention the reassurance about suppressed TSH and links that you have provided?

[SlowDragon Administrator in reply to janey1234]

Well we can’t add masses on website

People need to make their own assessment and research

Like statins increase risk of diabetes, but that doesn’t mean they’re not prescribed

[janey1234 in reply to SlowDragon]

Ok...fair enough. Thanks for all your help and links. My mind has been put at rest ☺