Suppressed TSH with hypo symptoms

Hello all

I am new to this site and looking forward to any help that comes my way.

On T3/T4 after 3 years illness because of high dose Thyroxine which was not converting properly. Thyroidectomy for follicular thyroid cancer June 2012. Given 60 mg T3 between op and post-treatment scan. Never felt better. Problems began when put on high dose thyroxine.

Now on 20 mcg T3 and 75 mcg Levothyroxine. Migraines, fibromyalgia much improved but I have semi 'crashes'. Feel that thyroxine doesn't suit me. Trying to go T3 only but Endo reluctant.

Main query: Since coming off high dose Thyroxine (200 mcg - FT4 was 44) and starting T3/T4 (6 weeks ago) have put on 7 lb (just on my stomach - not generalised - look very pregnant) and have what I believe are hypo symptoms such as hair loss and constipation. Last bloods 3 weeks ago - TSH <0.5, FT3 6 (top of range 6.8 and FT4 17 (top of range 22)

Main question - can you have suppressed TSH and hypo symptoms? Any other info welcome.

Happy Christmas :)

6 Replies

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  • Hi and welcome :)

    Yes you can have a suppressed TSH and hypo symptoms. That is exactly what I had. The pituitary doesn't respond in the normal way once you are hypothyroid and on treatment so it is of limited use for anything other than diagnosis (and then its use is limited if common reference ranges are used).

    If you previously had trouble converting T4 to T3 you possibly still have this issue (another thing we both share). I have only ever felt well on T3 only. I am considering adding a very small amount of T4 in the new year but I am definitely better with T3.

    The problem is that if you can't convert T4 well, it ends up being converted more to reverse T3 than the active T3. It is normal to convert to both forms but if conversion is skewed more to reverse T3 (inactive) then the active T3 has more competition for places in the cell receptors. This effectively makes you hypothyroid. Unfortunately in the UK it is only possible to get a reverse T3 test done privately. The NHS don't do it or believe in it. Reverse T3 reduces TSH levels in the same way that T3 does so your TSH is no indication of your active T3 levels.

    There are various ways of reducing reverse T3 to normal levels. The easiest is to reduce your T4 and increase your T3 but it could take a lot of effort to convince your doctor of this.

    Another way is to find out the cause of your conversion issues. Some of the factors involved are lower than optimal iron, too low or too high cortisol levels, stress, diet, over-exercise, lack of sleep etc, etc... It would be wise to start by asking your doctor for the following tests: serum iron (needs to be well within the range), ferritin (stored iron - best around 70-90 for many), folate (best above 12), B12 (needs to be above 500), vitamin D and cortisol. All of the above affect how well your body can use your thyroid medication. If your results are in the normal range but below the values given above, you may want to consider supplementing. Your GP won't prescribe supplements if you are in range so you would need to buy them yourself. People on here are very good at recommending particular supplements that work for them so it is worth posting again when you get these results to get some ideas of what to look for in a supplement. You may also wish to look at Thyroid UK's main website for more information on all things thyroid.

    thyroiduk.org.uk/tuk/

    I hope that is of some help and that you find a solution soon.

    Carolyn xxx

  • Yes, you can still have symptoms even with a suppressed TSH. It may be that levothyroxine doesn't suit you whatsoever. I felt very unwell on levo, improved when T3 was added but have recovered my health on T3 alone.(I was also well on NDT). Although many doctors will not prescribe. Even better for many is natural dessicated thyroid hormones, relegated to the 'past' by the BTA and their guidelines make false statements about NDT.

    thyroidscience.com/Criticis...

    web.archive.org/web/2010103...

    web.archive.org/web/2010073...

    My personal view is that people without a thyroid gland deserve better than T4 only which doesn't suit quite a lot of patients. NDT contains all of the hormones our thyroid gland produced, T4, T3, T2, T1 and calcitonin and why would Mother Nature provide these if unnecessary. The following is re T3 only and Dr Lowe himself (although not hypothyroid) took T3 only and his patients were prescribed either T3 only or NDT. He only took a blood test at the beginning of treatment and thereafter it depended on how the patients responded to particular doses.

  • Tsh is a total nonsense test which anyone who bothers to understand the pituarity /thyroid feedback loop should know

    i strongly suspect that many of your symptoms are reaction to lousy thyroxine

    you may well be better on t3 alone (my husband and daughter were on 120mcg T3 without ill effects beyond agony in their joints)

    For them and many others only NDT resolves their hypo symptoms along with the intense joint and muscle pains synthetic thyroid meds cause

    endos have stupid bees in their bonnets about t3 and refuse to face the issues of nonnconversion of levo /t4

    D102 gene

    need for ferritin,folate,b12 ,vit d3 all to be over halfway in their ranges

    or the completeness of NDT with its t1 t2 t3 t4 and calcitonin

  • Welcome to the forum, Miggy.

    I sympathise having had very similar problems on T4 only. Reducing 200mcg-100mcg over 7 months saw my FT4 fall from 34 to 16 but my FT3 also fell below range. Adding in some T3 helped a little but I was still in a lot of pain and very unwell. In the end I stopped T4 for 3 months to clear my system which did the trick and I tolerate T4+T3 well now. I actually prefer T4+T3 combination to T3 only.

    The other thing I found was that although blood results looked good it took another 6/8 weeks before I *felt* good (good being relative to how bad I felt on T4). I still tire easily and have little stamina after being largely bedbound for 18 months so its taking time to rebuild fitness.

  • YES!!! Like before, i guess you are not converting well. T3 only would probably work great for you.

  • Thank you everyone. Hoping to persuade Endo in new year to reduce my thyroxine by 25 mcg and add another 5 mcg T3. Want to continue doing that until I'm on T3 only. I'm lucky he agrees with T3 but trying to move him to T3 only is not easy. Would dose myself but think my wonderfully supportive GP would be nervous about that. Oh well, onwards and upwards. Just want this weight gain and preggie look to stop. My magic knickers are being pushed beyond their limit. Lol. It would also be useful to get rid of the peskie constipation.

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