Help Please...

[jackie1075]

After struggling on Levothyroxine for 6 years, eventually got on Liothyronine (T3) been on it for a few years and been feeling just fine, but endo sent me for a bone density scan just to make sure everything okay as apparently it can cause thinning of the bones, Dexa scan came back not good, not quite osteoperosis yet but it is osteoprenia so endo has stopped T3 and now wants me back on Levo (T4), been on this now for a week and already feeling the difference in myself - but anyway has anyone else on liothyronine T3 had bone thinning or found they have osteoprenia or osteoperosis? thanks Jackie

[Hennerton]

Were you on the T4/3 combo or T3 only? If the latter, would your endo consider the combo. That way you will still get T3 but he will be happier that you are also on Levo. In any event, did you have a Dexa scan before starting T3? Do you definitely know T3 has caused this? I thought that osteopoenia was fairly normal at a certain age (but maybe you are very young?).

[jackie1075 in reply to Hennerton]

Hi Hennerton, I have been on a T3/T4 combo - 30 mcg T3 and 50 mcg T4 - No I did not have a dexa scan before I started the T3 (wish I had). I am 48 and have just gone through menopause.

[Hennerton in reply to jackie1075]

Hmm. Not exactly a huge dose is it? I think you need to ask your endo for some studies showing the link with osteoporosis and another study showing that people on Levo never get it. Will he be able to find any? I doubt it. If I were you, I would self medicate and have a happy life.

[Hidden]

I take a high-ish dose of T3 (self-medicate, used to be higher) and have recently been diagnosed with osteoporosis. NHS Endo blamed the high dose of T3 but I reckon it's more likely to have been caused by the ineptitude of 3 GPs who failed to recognise hypothyroidism when it was staring them in the face. If I had taken T3 sooner then perhaps I would not have osteoporosis.

If you're doing well on T3 then why on earth would you stop taking it? That's just a pathetic get-out clause from your Endo who wants to save the NHS some money. Has he given any assurance that your health would not deteriorate when taking thyroxine?

There's plenty of threads on osteoporosis, just use the Search function on here. I've refused to take NHS medication for osteoporosis and buy my own instead.

At the end of the day you have to decide whether to trust the NHS with your health.

[Clutter]

Jackie, I'm on T4+T3 and TSH is suppressed post thyCa. I'm awaiting the results of my June Dexa scan and doubt I'll hear before my endo consult in September. If I have osteopenia or osteporosis I will not stop T3.

My sister had osteopenia when she had Graves so nothing to do with T4 or T3.

[silverfox7]

Why do doctors over react! I went to fracture clinic with a broken ankle after a nasty fall on black ice. I was not potted and discharged immediately as I was considered sensible enough! Had worked in the medical school. Anyway there were notices in the clinic asking for volunteers to have a bone density scan if 55 or over. Why not I thought! I'd worked in a physiology department and recognised the benefit of research so I enquired. I was sent a hefty questionnaire on medical history and lifestyle and an appointment with a note to say if we find a problem we will do further tests there and then. So far so good. I went along for the scan and then was told I could go home so I queried does that mean ok and no further tests. Ok so forgot about it. The report said osteopenia in keeping with a lady of my age no further treatment needed. Great! But then I get sent to see an Endo as my then GP couldn't answer a question and suddenly it appears that I am taking too much thyroxine as hospital says I had to have a bone density scan because I had a fracture and made it sound like 'it had just happened'! The diagnosis was missed in a minor injuries unit but did have badly damaged tendons etc. I then got a phone call sending me to fracture clinic. I spent £30 on taxis as not weight bearing, saw a crack on my fibula and wasn't even examined but discharged. Wish I'd never been now though Endo put me on D3 but no one will believe I volunteered for this scan and are blaming taking too much thyroxine for what? Something that is normal for my age was the wording but another excuse to reduce my meds. Guess what my answer was to that!

[MaryMary]

Hi Jackie

have you had your vit D tested? If it's low then it's harder for the body to absorb the calcium we need for our bones. I do agree with the others that it may not be the T3 but years under medicated or unable to convert T4 to T3.

Mary

[Glynisrose]

No, being UNDER medicated causes problems.

[penny]

that old chestnut...I went for a bone density scan as on 120mcg T3 only - they didn't find anything amiss (57 y.o., taking 5000iu D3 and raised on gallons of unpastuerised milk).

As pointed out, as it is not possible to know what your bone density would be had you not been taking T3, then it is impossible to conclude that the T3 is responsible for loss of density.

An excuse, methinks, to save money.

[shaws Administrator]

Jackie,

Did your Endo do a bone density scan before you were given T3. Personally, I just think it is a great excuse for him to stop your T3. Considering T3 is the Active hormone all our cells need and you didn't feel well on levo (which has been recalled umpteen times for inconsistencies). They also prescribe doses which are too low and patients are then in the pipeline for other more serious diseases such as cancer, diabetes or heart. This is what Dr Lowe said and following on from this you can see the list of side effects amytriptilene can cause:-

Dr. Lowe: First, let me clarify an important point: Our treatment protocol does not consist solely of patients using T3. Only two groups of our patients use T3. One group is patients who appear to have thyroid hormone resistance. The other group is hypothyroid patients who fail to benefit from desiccated thyroid. Our other patients use desiccated thyroid as part of their metabolic rehabilitation regimen. (We don’t, of course, waste time any more trying T4 alone; it’s too seldom of any use.)

Now, to address your rheumatologist’s assertion that T3 is dangerous, and his implication that amitriptyline is not. I think the best way to reply to him is to quote publications that are available to him. In the USA, when patients get their prescriptions filled for T3 (usually the brand Cytomel), the pharmacist usually gives them a leaflet on the product. The leaflet contains the following statement:

"NO COMMON SIDE EFFECTS HAVE BEEN REPORTED with the proper use of this medicine." (Medi-Span, Inc.: Database Version 97.2. Data © 1997.)

This statement makes a fact perfectly clear: When used sensibly, T3 is extraordinarily safe among prescribed drugs. When I say extraordinarily safe, I’m comparing T3 with drugs such as the amitriptyline which your rheumatologist prescribes for you

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[TWolfe]

Hello, just found ur post and wanted to comment...I had both sets of thyroids removed 5 yrs ago. I have had trouble the whole 5 yrs. I was first put on Levothyroxine and they could keep me with good levels so they switched to Synthroid 150mcg, Liothyronine, and Fludrocortisone (Because it caused adrenal failure).. Ive gotten to where i cant even walk now with out a walker. Just had test done this past week to find out its damaged a heart valve that i have to have repaired and my Dexa scan came back bad, in full Osteoporosis and brittle bone. I stay insufficient in with Vit D, Calcium, B-12, DHEA, magnesium, potassium, and THS. As of this week they stopped my T3 meds (Liothyronine) and has me scared. I believe with all the troubles that our T-3 is the most important. I also learned that using Calcium and the osteoporosis drug I on, Alendronate can cause weakened bones after taken for long periods of time. Its scary to think u could have weakened bones with or with out the meds. I hope things work out for u. Blessings