Update - Endo Visit

[SophiaR]

I saw the Endo yesterday! I have been self medicating with t3 only and my doctor referred me back to the Endo. Waited over 2 months for this appointment and by the time it came I was up to 237.5 mcg of t3. I feel fine in fact great but the Endo I met with said it was such a high dose and wants me to reduce. He said he is willing to prescribe T3 to me but I have to reduce my t3 and combine T4 also. He wants me to reduce my t3 to 60mcg and take t4 at 50mcg, obviously gradually. I want to do as he says because it looks like someone finally wants to work with me on this but I have been feeling so good and to go back to that dark place of feeling really unwell scares me. I was on t4 only then.

What do you guys think?

[shaws]

This link deals with Thyroid Hormone Resistance where supraphysiological doses are required to relieve symptoms. Read last question on this link:-

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

This is also by Dr Lowe and his website is now archived as he died last year. You will see that T3 is safe.but that most Endos are unaware of this.

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

[Hidden]

Blimey! That's a massive dose of T3!! This is an NHS Endo presumably?

Edit: my NHS Endo has blamed my 150mcg of T3 for recently diagnosed osteoporosis but has not wanted to investigate further.

[shaws in reply to Hidden]

This is an excerpt re T3:-

1.

Your doctor’s false belief about the use of T3 isn’t unusual. Many doctors believe that T3 is dangerous. When pharmacists fill prescriptions for Cytomel, however, they often give patients a leaflet that makes the safety of T3 perfectly clear. Verbatim, the leaflet reads: "NO COMMON SIDE EFFECTS HAVE BEEN REPORTED with the proper use of this medicine." (Medi-Span, Inc.: Database Version 97.2. Data © 1997.) When used with reasonable precaution, T3 is perfectly safe.

Doctors commonly prescribe a variety of drugs to control hypothyroid symptoms that continue despite patients’ use of T4. In stark contrast to T3, most of these drugs have long lists of potentially harmful effects. The safety of T3 use starkly contrasts with the risks of using the other drugs. Since this fact is well documented in the medical literature, I find it baffling that so many doctors falsely believe just the opposite.

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

2.My research group has spent the past ten years studying fibromyalgia caused by thyroid hormone resistance. We have laboratory proof that about one third of the fibromyalgia patients we’ve evaluated and treated have thyroid hormone resistance. Our treatment results have forced us to a firm conclusion: For most fibromyalgia patients with thyroid hormone resistance, using plain T3 (as part of comprehensive metabolic rehab) is the only route to recovery. With the proper use of plain T3, 75% to 85% of these patients permanently recover. It will be tragic indeed if, despite our research findings, some resistance patients are blocked from taking this route to recovery by a well-intended but false idea that plain T3 is "a very bumpy road" to travel.

[Hidden in reply to shaws]

Thanks shaws. Do you know whether anyone actually gets diagnosed with thyroid hormone resistance in the UK? My Endo couldn't be bothered investigating to see why I needed such a dose, all he used to say was reduce it.

[shaws in reply to Hidden]

I don't think so. They are told only to go by the TSH. It is only because Dr Lowe dealt with fibro/cfs/thyroid patients who didn't get better on the usual methods of treatment. I assume, in a way, that's what used to happen before the blood tests came in - that patients were given increased amounts of NDT until all symptoms went.

[Hidden in reply to shaws]

OK, thank you for your reply.

[MaryMary in reply to shaws]

Shaws would you PM me about point 2 as I would like to send it to a relative who's in this very position and her consultant won't prescribe T3. Thanks

P.s. I tried to copy the paragraph but failed!

Mary

[SophiaR]

Why do you say I am overdosing? Just because of the number? How I feel. My body temp, my heart rate, my symptoms don't stand for nothing?

[HarryE in reply to SophiaR]

Of course they count for something, but it is an unusually large dose. But it may be that it's right for you. Have you have any blood tests done recently? T4 & T3 can work together quite well I believe.

[SophiaR]

I felt it was right for me. I will try the combo and hope it works.

[HarryE in reply to SophiaR]

I think it would be sensible to have some baseline blood test done before you change anything. Did he do any?

[shaws in reply to SophiaR]

I am in superior health by not including synthetic T4.

[SophiaR]

No.

[HarryE in reply to SophiaR]

In which case, he cannot have anything to base his recommendation on! I despair - really!

[shaws in reply to SophiaR]

Read the second question in this link excerpt:-

Many endocrinologists talk of using the TSH and thyroid hormone levels to "fine tune" hypothyroid patients’ thyroid hormone dosages. Considering how much the hormone levels vary, however, it’s obvious that the concept of fine tuning is mistaken. For the sake of their patients’ health, endocrinologists should promptly abandon the notion. This is unlikely, though, due to financial inducements the endocrinology specialty receives from corporations that profit from doctors endlessly ordering the hormone levels to "fine tune" their patients dosages. Hopefully, though, you can use the scientific evidence to persuade your doctor to use a safer and more effective approach with you.

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

A study by Fraser,[44] for example, showed that the TSH and free T4 tests—which Guttler uses—are in fact highly fallible. Fraser studied patients on T4-replacement. Of 108 patients who were free from hypothyroid symptoms—and any signs of overstimulation—53 (49%) had TSH levels below the lower end of the reference range. This was a TSH level that thyroid specialists such as Dr. Anthony Toft have falsely designated a "thyrotoxic" level.[47,p.91]

The endocrinology specialty has intimidated most conventional doctors into accepting without question Toft’s false designation. As a result, most doctors would have had Fraser’s patients—who were free from hypothyroid symptoms but had low TSH levels—reduce their T4 dosages. Of course, this would have raised the patients’ TSH levels. And most likely, it would have caused them to begin suffering again from hypothyroid symptoms.

[mickstability]

Hi Sophia - I'm with the others - it sounds like a whopping dose. I'm TT and do fine on 80mcg T3. Even then my endo rumbles on about risk of atrial fibrilation and osteoporosis (which I ignore ). I notice from your recent posts that you've not been on anything like this much T3 for very long. If I were you (and I know I'm not) I'd ease back and give yourself time to stabilise on the smallest effective dose. I've found that I seem to 'store' T3 for longer than is normally thought - there's a lot of talk about it's short half-life of 3 to 4 hours, but a half-life is just that - you've still got half of it left, and I stopped upping my dose when I could no longer feel the effect soon after taking it. I think we're all concerned that you just shouldn't need that much in order to feel OK. Best wishes Richard.

[SophiaR]

Richard,

That was lovely. Thank you

I will ease back on the dose and eventually introduce the levo.

Sophia.

[Hidden]

Do you have a conversion problem? If you have then avoid Thyroxine like the plague and of course he'll only work to guidelines that leave people ill.

Strangely enough, I've reduced my T3 dosage despite actually feeling I was under-medicated (osteoporosis diagnosis made me distraught). Now taking 125mcg and feeling noticeably better but will attempt to reduce that after a few weeks.

Been taking T3 for 2 years now.

[suzannai]

hi there. I am have been on 90 mcg T3 for one month and no change in my symptoms. With regards to your husband, did 120 mcg T3 make him better? My main concern is facial swelling - myxedema - and I wonder if I should increase the T3 more or add NDT. My labs of course are all normal so we think that there is thyroid resistance.

[penny]

The problem, as I see it, is that the nhs only accept a dosage of 60mcg of T3, maximum. There is no reference to how the patient responds to dosage.

I recently saw an endo. who was knowlegeable and attentive to what I had to say, however, he could only prescribe 60mcg of T3 and I take 120mcg. (He didn't actually prescribe as I've never been diagnosed as hypo., by the nhs, only by private tests.)

As I have to self-medicate I go on how I feel and I check my bp, pulse and temp from time to time just to make sure.

One GP insisted that I add some T4, goodness knows why. I did and felt awful so I stick to T3 and am fine. For those of us with conversion problems the addition of T4 is a problem.

There is a preoccupation in the nhs with T3 and osteoporosis; my GP insisted that I have a dexa scan. The thing about this is that there is no control - we have no idea what our bone density would be like if we did not take T3.

[helvella in reply to penny]

At least one person here gets prescribed considerably more than 60 micrograms of T3.

I have not seen anything beyond a general statement that the typical range for treatment is up to 60 mcg - not that there is some absolute limit.

Rod

[penny]

I note what you say, Rod; the endo., I saw would not go beyond 60mcg whether this suited the patient or not. I interpretted this as being a rule of the nhs rather than the endo.'s.

[helvella in reply to penny]

There are so many cases where doses have to be different for some people. I tend to think the optimum dose of paracetamol if you have a headache is two 500mg tablets. If you have not got a headache it should be zero mg.

The British National Formulary says this:

By mouth, initially 10–20 micrograms daily gradually increased to 60 micrograms daily in 2–3 divided doses

The Patient Information Leaflet says this:

Adults:

The dose will depend upon your condition, ranging from 10 micrograms to 60 micrograms daily in divided doses.

medicines.org.uk/emc/medici...

But the Summary of Product Characteristics says this:

Adults: Starting dose of 10 or 20 micrograms every 8 hours, increasing after one week, if necessary, to the usual recommended daily dose of 60 micrograms in two or three divided doses.

medicines.org.uk/emc/medici...

The SPC clearly says usual recommended daily dose of 60 micrograms - and I cannot accept that this in any way implies that 60mcg is a maximum.

I do not believe you will ever find a "rule" that says 60mcg is a limit. Even more crazy, the German Thybon Henning brand produce a 100mcg tablet. If that doesn't imply that some people need more than 60mcg, why on earth do they make and market it?