To Levo or not to Levo that’s the question

[Trying-hard]

I have so many of the health issues listed here lower back pain, bloating more recently ears popping and generally experiencing symptom that you get flying. What can I ask my gp for as an alternative to levothyroxine?

[Judithdalston]

Other than these few problems have you any reason to believe you are hypothyroid? Start off with getting your blood thyroid levels (TSH, FT4, FT3, total thyroxin) tested, plus two thyroid antibodies ( TPO and TGIF Ab) to check for Hashimoto’s, and folate, ferritin, VitD and B12 levels. Your Gp is rather unlikely to test all of these, but it is worth checking all as they can affect how we feel and how our thyroid performs, so consider a private blood test ( 11 elements) from Blue Horizon or Medichecks. Why are you against levothyroxin...if you need it, other than T3 or NDT type thyroxin hormone supplements there isn’t anything else, though getting your mineral/ vitamin levels optimum ( as above , but selenium, magnesium, zinc etc) can help too.

[Trying-hard in reply to Judithdalston]

Hi Judith I have hypothyroidism so am on 150 levothyroxine a day. It wasn’t doing anything at first I felt terrible but it turned out that some of the supplements I was taking seemed to interfere. So now I take Levo at night. I am always on antibiotics get constant chest infections for which I’m now a 5gm 6 predispone and doxycycline 100 mg for 10 days. I’m guessing my immune system is useless for the time being, the my bloods said that my T4 was ok due to the thyroxine but T3 low?

Any advice going to see my gp Thursday

Thank you

[Hashihouseman]

I did wonder whether all those adverse effects (and more) were from levothyroxine, I continue suspect they were even though they have largely dissipated since becoming much much less hypothyroid on a stable levothyroxine dose. What worked for me was Keeping each dose of levothyroxine as low as possible by splitting into 4 separate doses for each 24 hr period and supplementing 2 or 3 of those doses with very small doses of t3 e.g, 25 mcg levothyroxine every 6 hrs or thereabouts and between 1 and 3 mcg liothyronine with the am not pm levothyroxine doses.

[Trying-hard in reply to Hashihouseman]

Ok thanks this sounds sensible enough I have been on 150 levothyroxine for 6 or 7 years now

I will perhaps try this

Thank you

[anonymous45]

As others have said, you need a full thyroid and antibody blood panel, as well as important cofactors (vitamins and minerals). Without this it's impossible to advise you.

If you are on Levothyroxine due to diagnosed hypothyroidism, how long have you been taking it?

For me, because I went undiagnosed for so long; it took my body a whole year to adjust to having reasonable levels free T4 in my blood.

I had to take T3 as needed to boost my metabolism and stay functional. After many months of relying on T3 as a crutch, my need for it decreased. As my body adjusted towards a euthyroid state, my conversion improved (thankfully) and I was able to take T4 only.

If you suspect T4 in causing symptoms, ensure you also get a Reverse T3 (rT3) test.

[Trying-hard]

I have hypothyroidism and have been on levothyroxine for 6 or seven years I have chronic shoulder pain now. I have had pneumonia, septus the list goes on, they wouldn’t give me my steroid injection in my shoulder last week cos of the steroids I’m taking for my chest. I’m so depressed I just wept.

Thanks for the advice

[Judithdalston]

Unfortunately I have found with 13 odd years of Hashimoto’s hypothyroidism I have had lots of health problems too that would appear to link up to undertreated hypothyroidism: from 40 years of spinal/rib/hip/ neck/ shoulder problems, and later fibromyalgia; vertigo, ear ache, nasal drip/ cough; gall bladder blockage resulting in sepsis/ septic shock then insulin- dependent diabetes...... so can sympathise with your problems and feeling frustrated that if hypothyroidism does cause some or all your symptoms why isn’t anyone treating the hypothyroidism properly? I went down DIY route having read lots of info. , including in archives on Thyroid U.K. website ( notably Dr Lowe’s documents)... raised levothyroxin dose to put FT4 above range to show FT3 never got to even halfway in range, then added T3 . Got to 37.5 mcg T3 added to 100 mcg T4 this summer and even after 4 months on this ‘high’ dose feel I need more T3, even though above FT3 dose. So might be worth you experimenting along similar lines...needs a lot of patience but least gives you some feeling of positive control over health rather than waiting months if not years for NHS tests/ referrals!

[Trying-hard in reply to Judithdalston]

Thank you so much I feel as if no one understands if nothing else comes of this you have at least lent me your ear it’s incredible how much it cheers you up. I am sometimes in absolute despair, it’s like the doc says thyroid problem. Take thyroxine????

The other things like fainting I think due to anxiety, just seem to get brushed aside and I’m now attending falls and sync at the hospital.

Thanks again

[Trying-hard in reply to Judithdalston]

Hi Judith I had exactly the same problem my t4 looked high but t3 uptake still low? What is the name of the t3 med please? Seeing my gp Thursday morning.

Thanks again for your time

[Judithdalston in reply to Trying-hard]

I get my T3 , Tiromel, privately from abroad. Very few GPS, never mind Endocrinologists are giving out prescriptions for T3 now the cost to the NHS has escalated so much. Pm me if you want a contact to buy.

[Judithdalston]

Forgot to add the vertigo was actually regular full faints to floor, and 3 full fits! Unfortunately there are quite a few forum members who have great lists of decades of illness that earlier and better thyroid treatment might have helped. Stick in there and try to take some control...too many hypothyroid patients become labelled as mentally ill as doctors don’t understand our symptoms are real. X