Weight Fluctuations - Same Dosage

[sjdean]

Im going to break my questions down into more manageable chunks -  could anybody explain why my weight fluctuations of upto 3 stone, 20 kilos has not resulted in any thyroid dosage changes?

I've stayed at 150 mcg and varied between 16 and 19.5 stone.

My pet hobby at the moment is to try and prove some kind of rT3 problem, but my docs aren't having any of it. So time for some education.

[sjdean]

I must say, sometimes I do think that the switch to Esomeprazole, or even the extended period on Lansoprazole coincided with the issues Im having. Im gonna give up the Esomeprazole for a while.

[Red_Star]

The package insert for prescription acid blockers states 4 - 8 weeks for GERD. OTC acid blocker prescriptions 14 days, 3 times a year.  A very good reason for that!  My mother was on acid blocker nexium for over 5 years her symptoms were severe and life threatening. She now takes betaine HCI with pepsin supplements to increase stomach acid and digestive enzyme supplements to help with digestion.  Chris Kresser has an article on acid blockers actually "How your antacid drug is making you sick."

[sjdean]

Hello Gimel,

I came across a page from some chap called Chris Kresser regarding Low T3 Syndrome.and in it, he basically suggests that if there's a problem with T3 conversion, then it's either a problem with the hypothalamus not creating enough TRH, the pituitary not creating enough TSH, a problem with one of the organs such as Liver, Gut, Skeletal Muscle, Brain or Thyroid gland itself in not doing the conversion or, Im gathering problems with TBG in not transferring the stuff to the right places anyhow to create FT4 and FT3.

This is where it starts coming back and why my GP is more keen to do Liver function tests as the only real tests he can do (he's checked loads of things).

To me it seems logical, if you can't test for FT3, you can at least test for quite a few of those things on Chris Kresslers list. Cause and Effect. If you treat the Liver problems, do you restore FT3? If you have no liver problems, does that mean there is no FT3 issue?

I need some kind of convincing argument given the NHS opposition to T3 treatment. It certainly seems plausible, that if there is a problem of conversion to T4 to T3, you fix what is causing the problem instead of just whacking T3 on top.

Simon

[gimel]

A problem with inadequate conversion of T4 to T3 is not rare at all when taking T4 meds.  In fact, scientific studies suggest that it occurs in the majority of cases of patients taking T4 med only.   Reverse T3 dominance is a much less frequent problem and not one that I usually even think about as a possibility unless the patient's Free T3 and Free T4 don't stand out as a problem.  

In your situation, I think I would push the doctor to prescribe a source of T3 med for you, in order to gradually raise your Free T3 level nearer the top of the range, and monitor the effects on symptoms.  I also suggest that you get tested for Vitamin D, B12 and ferritin.  Hypo patients are frequently too low in the ranges for those and suffer with associated symptoms, some of which can mimic hypothyroid symptoms.  Also note the following info I picked up from goolarra.

"Thyroid treatment isn't optimal -- and may not work -- if you do not have adequate Vitamin D for the crucial final metabolic step, which takes place at the site where thyroid hormone actually works. This happens inside the nucleus of the cell. Vitamin D needs to be present at sufficient levels in the cell in order for the thyroid hormone to actually affect that cell. That is why vitamin D is so crucial."

[sjdean]

I actually have a very willing GP, although there's part of him that thinks strongly that I don't have a conversion problem because it is very rare and there would be other markers in other blood results.

In any event, I know he has requested FT3 and RT3, but the labs that they use always overrule him and stick to NHS guidelines. I was wondering if I could convince the NHS to send to a different lab instead that will test those... say, Genova?

Im from Birmingham.

Simon

[gimel]

The people who don't do as well as they would like on T4 usually find that their body is not adequately converting the T4 to T3.  Even when they keep raising their T4 med, and Free T4 level, the Free T3 level lags behind and they still end up with hypo symptoms.  


I suspect that the UK doctors have more leeway in testing and treating hypo patients than they typically are willing to use, and they use the NHS guidelines to protect themselves.  One of our UK members who became very frustrated with the situation finally was successful in getting what she needed.  This is how she described it.  

"What I have learned from my experience is that you have to go to the Dr's office and TELL THEM WHAT YOU WANT and to go backed up with knowledge.  You have to tell them that you have done your reading and looked into your condition and care about the long-term treatment of your health and thyroid.  If you fight for what you want, you will eventually find someone that is happy to go along with your wishes.  But we all have to take charge of our own health, right?"

So you have to learn all you can about proper testing and treatment and then be insistent on what you want.  If all else fails you have to go private for treatment.  If you have to go that route, let us know your location.  I know a few UK doctors, mostly in the London area.  

[sjdean]

The only thing that sets me on Dysautonomia, is the breathing rate. Dysautonomia can apparently in some situation be triggered by lack of T3. Interestingly, I also have some areas of demyelination on the brain, though no changes in around ten years. Im also aware, T3 has been linked to remyelination.

Hence Im on a bit of a kick again about T3.

If T3 doesn't work, why do so many people who do badly on a T4 only medication do so much better on T3?

I can't believe the NHS just dismiss this.

[sjdean]

I think I have been tested for Iron and Vitamin D. Vitamin D has been known to have been low in the past and I been taking Vitamin D tablets (that was last year) and I think Iron was normal. I have no ranges. I know all that will happen though I'll get those tests, but not the rT3 I actually do want through the NHS, so will have to pay private.

I forget other symptoms - or what I class as part of me including:

Forgetfulness, mild depression, anxiety (both of which come and go). When I was first diagnosed, I couldn't stomach alcohol (I like to think of it as not being able to metabolise alcohol) and as treatment progressed, so did my ability to stomach alcohol. Acid reflux was present to begin with until I came up to speed on T4, but now the T4 is cut back, I've been Esomeprazole for a couple of years. Dry throat and congested sinuses.

Will ask GP about Iron and B12 and get my own private tests done for FT3 and rT4.

Just got to see if I can convince him to trial me on Armour (I know it can be done) or a synthetic T3.

Simon

[gimel]

I wouldn't worry about Dysautonomia at this point.  Too many other possibilities related to thyroid issues.  Your Free T4 is adequate.  Your Free T3 is at only about 56% of its range.  There is lots of room to raise your Free T3 level as necessary to relieve hypo symptoms.  I say that because scientific studies have shown that Free T3 correlated best with hypo symptoms, while Free T4 and TSH did not correlate at all.  Many of our members, myself included, say that symptom relief required Free T3 in the upper part of its range and Free T4 around the middle of its range.

Of course there are also other factors that could be affecting you.  Serum thyroid levels do not always accurately reflect tissue thyroid levels.  There are only a few direct measures of the downstream effect of tissue thyroid levels including basal temperature, metabolic rate, and ankle reflex.  Even with those, the results have to be evaluated against supposedly "normal' ranges.  One of the supposedly best indirect measures of tissue thyroid levels is the ratio of Free T3 to Reverse T3, which has its own limitations as well.   So, it may be worthwhile for you to collect some data on your basal temperature, by checking and recording for several days, your temp in the armpit before getting out of bed in the morning.  It may also be worthwhile to try to get tested for Reverse T3, along with Free T3 and Free T4.  

Finally for now, have you been tested for Vitamin D, B12, and ferritin (iron)?  If so, please post results and ranges.  If not, you should try to get those tests done also.  

  

[sjdean]

Thanks gimel. It's been over the past few years. I was on 175mcg, through fasting one year for easter I came down a couple of stone, had my meds altered to 175 / 150mcg alternating daily. Put the weight back on, next year lost 20 kilo went very hyper, bought down to 150mcg daily, put 20 kilos back on and don't need any more.


Symptom wise, I have very broken sleep with an "alert" (not racing but not low) heart rate over night, I don't breathe enough, I've obviously put on weight and so far continuing to increase.

Always tired, brain fog, mushiness, dry skin between joints, dry skin in other places, and very little else besides.

I've been considering something called Dysautonomia which I've seen other people when they switched to a more natural thyroid hormone, or T4 replacement, their Dysautonomia symptoms disappeared and their sluggishness disappeared.

I probably got other symptoms but I can't remember. I had my gallbladder out last year, yes, and suffer with irregular movements. I know that can also be linked to both thyroid and dysautonomia.

It's just a general sort of malaise rather than any particular symptom that I got at the moment.

Simon

[gimel]

When you say your weight has fluctuated, do you mean it has just continued to increase, or has it gone up and down over the last few years?  What other symptoms do you have?  

[sjdean]

These are the results from 2011. Paid for these private as GP doesn't test for FT3.

THYROID STIMULATING HORMONE   0.90           mIU/L     0.27 - 4.2              
                              Please note new reference range effective 04.03.10              
FREE THYROXINE                18.8           pmol/l    12.0 - 22.0              
                              Please note new reference range effective 04.03.10              
FREE T3                       5.2            pmol/L    3.1 - 6.8                
                              Please note new reference range effective 04.03.10    

[gimel]

I expect that your bigget problem is that you have hypothyroidism while living in the UK.  Not a good combination since the NHS guidelines seem to only advocate using TSH to diagnose and treat a hypo patient.  That does not work.  TSH supposedly reflects accurately the levels of the biologically active thyroid hormones, Free T3 and Free T4, but in reality TSH cannot be shown  to correlate well with either Free T3 or Free T4, much less correlate with symptoms.  

Scientific studies have actually shown that the thyroid test that correlated best with hypo symptoms is Free T3 while Free T4 and TSH did not correlate at all.  This is very logical since Free T3 largely regulates metabolism and many other body functions,

Have you even been tested for Free T3 and Free T4?  If so, please post results and their reference ranges shown on the lab report.