T3 and TFT advice needed please

[Granny56]

Started Thybon 20mcg 26.05.2016 after a long course of nipping away at my local doctor, however due to a supressed TSH 0.017 (0.40-2.50 mU/l) hospital doctors a few days ago, have adviced me to stop the T3.

I was just starting to notice small changes like new hair growth and a morning temperature rise from 35.4 on average to over 36 degrees. My physio also found my muscles easier to work with so this is a bit of external confirmation of a positive effect.

My normal L-thyroxine regime was 50/75 mcg alternate days however, I dropped down to 50 mcg daily when I added the 20 mcg (slowly) into my daily medication routine.

I convinced my local doctor to do a full panel including reverse T3 but the labs only did the following:

TSH, basal 0.02 mU/l (0.40-2.50)

FT3 3.01 ng/l (1.70-3.70)

FT4 8.3 ng/l (7.0-14.8)

I do not have any signs or symptoms of hyperthyroidism or thyrotoxicosis. My pulse is 62 bpm as I type.

My iron levels were very low due to autoimmune pangastritis and duodenitis (reason for hospital stay) but now increased to 60 (range 60-180) with ongoing supplements therefore, I have just recently made it into the "normal" range. Folate also just within range as is vit D. My B12 was subtherapeutic despite 3 monthly injections for pernicious anaemia but I toped that up yesterday.

Should I increase my l-thyroxine to 75 mcg and ignore my TSH unless symptoms arise, or what do you think?

Furthermore, the hospital doctor wanted to start me on a PPI for life but I have virtually no stonach acid so I am resisting this because I cannot see a benefit however, I do need something to protect and heal my stomach and small bowel in order for absortion to take place. Any suggestions would be welcome.

[Heloise]

Your results look fine and you should not have hyper symptoms with a FT3 of 3.01. I hope they can't force you to stop your T3 when you are seeing such positive effects.

Reinforce that when you see them. Your FT4 is low because of the increased T3, so that's normal.

Trying to recall why low stomach acid causes acid reflux. It has something to do with the stomach lining attempting to produce more acid since it recognizes you have so little. I would think starting small amounts of betaine or apple cider vinegar first thing in the morning but I really don't know. You could check out this that coats the stomach lining for a while. iherb.com/Enzymatic-Therapy... The last thing you want is a PPI as you seem to know.

[linlow]

That pulse rate looks good, maybe at the top of the range as they like resting heart rate to be between 40 - 60 bpm nowadays but 62 isn't outrageous. Take a look at Malcolm Kendrick's opinion of his fellow practitioners understanding of T3 drmalcolmkendrick.org/2015/...

Although one would normally think of H Pyloria as the cause, your stomach acid is probably low because the parietal cells in your stomach lining have been destroyed by the pangastritis . This would also account for your low B12 as you can no longer absorb it from your diet. To help bring your gut up to condition you might try live kefir. I don't know if it can repair the parietal cell damage but it certainly does heal damaged gut lining. A probiotic, it has far far far greater amounts of healthy bacteria than yogurt and contains useful yeasts too. It won't be so much of an issue for you but it can also survive stomach acids so repopulates the entire length of the digestive tract too. eugenia.queru.com/2012/04/1... (if you can get it use goat, sheep or guernsey milk as these are most likely to be anywhere up to 100% a2 beta casein and kinder to your health, though coconut milk makes a superb alternative). Kefir is also high in vitamin B12, B1, biotin, K, folate, calcium, magnesium, phosphorus and has many other benefits including rebuilding bone mass and reversing osteoporosis (and any depletion you might experience as a result of the T3). Avoid sugar(s) as these can interfere with enzyme absorption and you need as long as possible for digestion to take place until your gut is healed.

hope this helps. If you want any more ideas or information let me know.

[Granny56 in reply to linlow]

Thank you for the links and information.

I have had H. Pylori twice (1999 & 2007) and have been treated with triple antibiotic therapy and PPI even though on both occasions it was noted that my stomach acid was low. However, on this occasion, no biopsy was taken during the endoscopy, nor was my stomach acid measured. Although no H. Pylori visably noted, said the doctor.

Since I do not produce intrinsic factor (a glycoprotein produced by the parietal cells) and my microvilli have been destroyed, I do not absorb B12 and many other nutrients and vitamins therefore, regularly need to supplement; over the last 30 years. Furthermore, I am lactose intolerant which makes taking some of the products you mention impossible.

When primary hypothyroidism followed by Hashimoto's disease 5 years later was diagnosed, it added complexity to the mix not just for me but also for the doctors treating me. Diabetes in January this year further complicated matters and doctors don't seem to be able to work accross the specialities to help me.

In the last 3 months I noticed that supplements no longer seem to work for me for example, my iron levels continued to drop despite taking 200 mg Ferro duodenal per day for 6 weeks hence the reason for my recent hospitalisation. Surgeons in gastroenterology however, were not interested in my concerns about providing the optimal environment for T4 to T3 conversion. For this reason I managed to convince my local doctor to prescribe Thybon 20 mcg. Today, he said I could remain on T3 until seen by the endocrinologist on 08.07.2016. I am sure she will discontinue it then as her colleagues in the same hospital wanted to discontinue it last Friday, telling me that the risk of osteoporosis and heart disease ( I already have diastolic heart dysfunction) are too great. I don't know how I will be able to convince the endo to let me try the T3 a little while longer because what started off as potential evidence in Dr Kendrick's article about T3 turned out to be not backed up by strong evidence. Nonetheless, thank you, it is a very interesting read.

[linlow in reply to Granny56]

Yes, it isn't really his speciality. Two further papers that might help you then :

Research study on T4 may not result in appropriateT3 levels ncbi.nlm.nih.gov/pubmed/119...

National Academy of Hypothyroidism paper on Thyroid Hormone Transport - nahypothyroidism.org/thyroi... To be honest, if your endo understands T3, you may not have too much trouble. Mine is certainly supportive.

Actually milk kefir is well tolerated by a great number of people who are lactose intolerant, in some instances reversing the condition, because the enzyme β-galactosidase in kefir grain breaks down lactose as it ferments. webmd.com/allergies/news/20... - fitlife.tv/why-you-should-d... I do understand the trepidation someone who is lactose intolerant would feel consuming something made with milk though, which is one reason I always tend to mention coconut (the other is that it is amazing ). Other non-dairy liquids like nut milks and juices can be used so long as the grains get an occasional milk feed (otherwise they become malnourished and fade away to nothing). There is another grain, known commonly as water kefir but more properly called tibicos, but this has less than half as many strains of good bacteria and good yeasts - only about 10-15 rather than 30-50.

That aside there are, of course, other fermented foods that you might gain some digestive benefit from. draxe.com/fermented-foods/ They don't all result in bone regeneration though.

[Granny56 in reply to linlow]

Thank you very much this is so helpful. A lot to read but if I can get myself through it I will be armed for battle when I meet my endo next week.

[humanbean in reply to linlow]

linlow

That pulse rate looks good, maybe at the top of the range as they like resting heart rate to be between 40 - 60 bpm nowadays but 62 isn't outrageous.

I think you have gotten muddled up with your numbers, linlow. Average resting heart rate in adults is 60 - 100 bpm. You are likely to have a lower heart rate (or low in that range) if you are a fit athlete. But other conditions can slow the heart down e.g. hypothyroidism, and it isn't indicative of good health.

Quote

What's a normal heart rate?

Most adults have a resting heart rate of 60-100 beats per minute (bpm).

The fitter you are, the lower your resting heart rate is likely to be. For example, athletes may have a resting heart rate of 40-60 bpm or lower.

You should contact your GP if you think your heart rate is continuously above 120 bpm or below 40 bpm, although this could just be normal for you.

End Quote

Source : nhs.uk/chq/Pages/2024.aspx?...

Quote

Hypothyroidism slows the heart rate and weakens the heart's contractions, decreasing its overall function. Related symptoms may include fatigue and shortness of breath with exercise. These symptoms may be more severe in people who also have heart disease. In addition, hypothyroidism can cause mild high blood pressure and raise blood levels of cholesterol.

End Quote

Source : uptodate.com/contents/hypot...

[linlow in reply to humanbean]

Yeh I know but the information actually came from a NHS cardio department so who was I to argue. Current medical textbooks, though, suggest 50 to 90 bpm. This will probably drop even further if only the proffession can get the population healthier newsmax.com/Health-News/hea...

Calls for a reduction in the figures came as early as 1999 after a meta-analysis of research, wherein it was noted that increases in all cause mortality were seen at HRs as low as 79 bpm hyper.ahajournals.org/conte... - 'we found a better prognosis in the subjects with heart rate lower than 64 bpm and as low as 50 bpm than in those with heart rates between 64 and 80 bpm.'

More recently (2008) a study of 11,000 people being treated for heart problems indicated that HRs >70 bpm increased cardiac risk ncbi.nlm.nih.gov/pubmed/187...

As far as athletes go, Miguel Indurain has a resting heart rate of 28 bpm. The slowest healthy heart rate is recorded at 26 bpm dailymail.co.uk/health/arti...

A long time ago, in a nature program, I heard the commentator say that the average heart beats the same number of times whatever the species - so, barring accidents, slower hearts keep going for longer. It seems that that has held true for all but man for some reason (I blame the aliens ) runnersworld.com/sweat-scie...

[Granny56 in reply to linlow]

Hi Linlow, my brain is a bit fuzzy at the moment and I can't see the reference to a sugested reference range of 40-60 bpm niether in the grey literature or the published study (BEAUTIFUL trial) or the Palatino commentary, which incidentally uses old references.

The Fox et al, (2008) study is an RCT involving a drug trial on very sick patients with cardiomyopathy and the longitudinal Danish study referred to in the grey literature collected data from 1970-1986.

I could not find anything in the ESC guidelines however, according to an expert panel (2010), while it has been evident for many years that persistent increased heart rate is a potential risk for premature cardiovascular mortality, there does not appear to be a consensus about creating a new specific resting heart rate for the general population as there are many things to consider which have not yet been studied.

onlinelibrary.wiley.com/sto...

[knackersyard]

Well if you communicate face-to-face as well as you write, I think you'll get what you want.

I always take along a clear letter or bulletpointed list with me. Well highlighted. Also print off any supporting studies. Put it in front of them. Help them to help you...

Pity they didn't do your rT3, but no surprise. I would do the Blue Horizons Thyroid PLUS TWELVE. That will arm you with the info you need.

Personally, I would not take PPIs (or not unless I was in extreme pain). When I had to do Triple, then Quadruple Therapy for H Pylori, I didn't take them & I'm now clear. In fact, I was taking Betaine HCL.

[Granny56 in reply to knackersyard]

Thank you, you are very kind.

I too take a list of questions with me otherwise I would forget ... Thick fog overhead

[knackersyard in reply to Granny56]

Haha, well I take it for that reason too 😉

Daft not to. To come out & realise you forgot to ask something is just poor planning.

I take 2 copies. One for me, one for them. Well highlighted.

It's easy to get what you want if you prepare well.

[Granny56 in reply to knackersyard]

Well said

[greygoose]

Doctors always want you to go onto T4 because they do not understand T3, and they are terrified of a suppressed TSH - with absolutely no reason. Their 'advise' is unscientific, with no real foundation. I would just ignore it, if I were you. If you feel well, stay on that dose.

I have never understood how a PPI is supposed to 'protect' the stomach. And they certainly don't aid absorption, they prevent it. You are probably already low in a lot of vitamins and minerals, because of your low stomach acid, PPIs will just make this worse.

[Granny56 in reply to greygoose]

Thank you.

Can you tell me how low I can let my TSH go before reducing my T4/T3 dose?

[greygoose in reply to Granny56]

You can get rid of it completely! It's superfluous. Ok, you need TSH to drive conversion, but if you're taking T3, you don't need to convert.

What you really need is for all your levels to be in a pkace that makes you feel well. And if that means a TSH suppressed, so be it. Do not reduce your dose just to raise the TSH.

[Granny56 in reply to greygoose]

Ok, but how will that affect the natural feedback mechanism?

[greygoose in reply to Granny56]

Why do you need the natural feedback system if your gland isn't working and you're taking thyroid hormone replacement?

[Granny56 in reply to greygoose]

Mmm...you've got a point.

When my brain starts working again I need to do some research however, at the moment I cannot concentrate and fall asleep after one hour using the computer. It was worse so I shouldn't be moaning.

[greygoose in reply to Granny56]

You have a perfect right to moan. We've all been short-changed in life by this dreadful disease!

[Granny56 in reply to greygoose]

Letter to my local Dr from endocrinologist arrived today. Based on the results of the supressed TSH only, she strongly recommends stopping the Thybon now. She goes on to explain that the risk of cardiovaslular disease (CVD) and osteoporosis for me is high.

Considering that I aleady have various forms of CVD, and it was her colleagues in the hospital that recommended a PPI which is notorious for causing osteoporosis, I am at a loss as to the justification she proposes.

My brain is not working too well at the moment but the few cells which remain active cannot work out how a supressed TSH causes CVD and osteoporosis. Can you shed any light?

[Hillwoman in reply to Granny56]

Have a read of this discussion. If you can print off the paper referred to and put it in front of your doctors, all the better.

healthunlocked.com/thyroidu...

[Hillwoman in reply to Hillwoman]

Forgot to say, Diogenes, one of the forum members who comments, is a researcher into hypothyroidism, so he knows what he's talking about.

[Granny56 in reply to Hillwoman]

Thank you for this, I will take the evidence with me to my endo appointment on Friday.

[Granny56 in reply to Hillwoman]

On the strength of the literature I produced, my endo has compromised with me and is allowing me to remain on Thybon, however, at the reduced dose of 10 mcg instead of 20 mcg. She will have a detailed look at the literature I provided ( with your help) and we will talk again in September.

I would rather remain on 20 mcg but I can see where her concerns lie.

Thanks for all your help.

[Hillwoman in reply to Granny56]

Well, that's good news and bad news. I'm relieved the endo has agreed to read all the literature you provided, but I'm concerned about the possible effects on you of a 50% reduction of T3 for the next two months until your next appointment.

If you start to feel worse, would you be willing to contemplate self-treatment? It is a big step to take, but if you need advice or information about this, I suggest you write a new post, so that as many members as possible will notice it and be able to answer your queries.

Let us know how you get on, and take care.

[Granny56 in reply to Hillwoman]

I only agreed on a reduction as a compromise so that my endo would retract her previous request to my GP to stop the Thybon. Since my T3 levels are near the top of the range, I have reduced to 15 (not 10 mcg ). I will monitor things closely until my next appointment.

Do you happen to know if anyone has made a symptom template?

I have created a new post for advice on the Metypirone test, perhaps you can help?

[Hillwoman in reply to Granny56]

There must be many symptom lists on thyroid websites and in books written for the patient. But you could write your own list with space next to each symptom to record improvement or deterioration over time. It is difficult for doctors to argue against information like this, because although it's subjective in nature, it is a systematic and coherent record.

I don't know anything about the Metypirone test, unfortunately, but I will read your post.

[Granny56 in reply to Hillwoman]

Thank you, I am just being lazy or hypo not sure which. I will make myself a template with Likert type scales to demonstrate the fluctuating nature of my symptoms. My memory is really bad at the moment therefore I hope I don't forget anything.

The last time I took a list of symptoms to my GP, he wanted to get me commited to a mental institution for being overly interested in my health, bordering on paranoia, he said.

Perhaps I am overly interested, that's because I now know that I need to stay on top of matters as most doctors I have come across, do not have the knowledge to help me.

Apart from cognitive function, I have greatly improved since last ytear, simply by reading advice on this website and following it up with my own research to ensure I fully understand the potential impact of anything I add or change. So far it seems to be working.

[Hillwoman in reply to Granny56]

Oh dear, I didn't mean to imply you were being lazy. I'm just not sure which website or book would be most comprehensive. You could do worse than look at TUK's website for guidance. A link to a symptoms list is below:

thyroiduk.org.uk/tuk/about_...

I'm horrified that your GP reacted to your interest in your health status in such a negative way. He was extremely rude to say this, and he probably said it because he felt threatened by a well-informed patient. There are too many of this type of medic about. Can you see someone else at the practice, or perhaps change practice altogether?

I'm glad you've had some improvement already as a result of your own efforts. Unfortunately, it seems that cognitive function can take longer to improve. I'm certainly finding this myself.

[Granny56 in reply to Hillwoman]

Thank you.

No you did not imply anything of the sort. It is I who needs to work out where the thyroid symotons stop and the ' can't be bothered' symptons begin😊

You have been more than helpful.

[greygoose in reply to Granny56]

It's amazing how little the so-called specialist (endos) know about thyroid! It's also very dangerous!!!

I'm glad Hillwoman posted that article for you.

[Granny56 in reply to greygoose]

I am also grateful to Hillwoman for providing the link to the information. At the moment my concentration is poor and I am not capable of conducting a literature search. It was so kind of Hilwoman to do this search on my behalf. However, on a positive bote, my energy levels have increased substantially and I was out in the garden pulling up the weeds at 08:00 this morning, something I have not been able to do for a very long time.

I only have 10 Thybon tablets left. So if the endo sticks to her guns despite the literature and won't prescribe more T3, then I will self-medicate. This is not a decision I take lightly as I have a very complicated medical history. however, I was a sceptic who is now a convert since the 26.05.2016 when I first took Thybon and noticed positive results within the first week.

Thank you to everyone who has helped me and to those who could not help but nonetheless wanted to help.

[Hillwoman in reply to Granny56]

Despite the fact you are having difficulty with concentration, I think you've thought through your complex problems with admirable clarity. In the end, it's your body and your life, and it is you who has to live with the consequences of medical decisions, not your doctors.

I'm glad you are feeling better on Thybon and I hope you continue to improve.

[Granny56 in reply to Hillwoman]

Thank you