My thyroid/adrenal problems

I wrote a bit about my thyroid issues in my Intro, but as it's looming large in my mind at the moment, I thought i would expand here in case anyone has any gems of wisdom to help. I did write a bit from time to time in 'the other place' but still feel things are not completely clear or resolved in my mind as to whether I do have ME or whether it's 'just' the thyroid/adrenal issue that is not well managed. There do seem so many overlaps.

I was diagnosed with underactive thyroid over 20 years ago, but when I slowly became ill during my menopause beginning about 15 years ago with frequent viruses, I did not link it with the thyroid as I was told that my numbers were fine. Some years later I got ill enough to get the ME/CFS diagnosis with more typical symptoms related to that.

It was many more years before I began to investigate the thyroid connection and by then I had been on Thyroxine/T4 for 17 years. Eventually I ended up on Liothyronine/T3 for nearly 5 years until our NHS began to check out everyone on it, and I was diagnosed with osteoporosis, and the T3 only was blamed of course. Since July I have been slowly had the T3 reduced and the T4 put back in and increased. I thought it was worth a try as I had never really been on T4/T3 for very long. I thought maybe I would be OK......

How wrong I turned out to be. I can't say I was CURED on T3 only, but I had certainly got a reasonable amount of energy and I had slowly worked on my various other symptoms and improved matters with various approaches. Since July within weeks my viruses have returned big time, with 4 colds in 2 months in July/Aug (ie summer) and since then at least a cold a month, with the current one for 3 weeks now. When the T4 reached 75mcg and the T3 down to 20mcg, I had 4 migraines in a week (having reduced the level of these hugely by using natural progesterone as I had migraines, but not this often normally).

I wrote to the Endo and the Endo's nurse who I had been forced to see every 6 weeks. She was awful - just like a robot, with no interest in my declining health as long as she did her job of getting me on the doses she was told to get me to. I even showed her the evidence of immunoglobulin tests I had done at the start and 6 weeks on and the decline was there to see (IgA below range and lower, and IgG dropped below range) to be told 'there are a lot of colds about....' (in July?). In reply to my letter a few weeks ago to tell them that I was dropping back to the previous dose of 50 T4 and 25 T3, I had a copy of a letter sent to my GP telling her that they were discharging me into her care.

I now feel that once again I have to take my health into my own hands because no one really knows the answers even though they believe that they do know them. I was told that a suppressed TSH would have contributed towards my osteoporosis even though patient groups totally disagree with this and believe that the patient should be treated and not the numbers. At the end of the day I feel I have to take a risk if I am to feel reasonably well and will have to treat myself as many thyroid patients now do and support each other. It's not ideal but I cannot go on like I have been doing.

I may end up having to buy my own thyroid medication if things go on as they are doing in the UK with T3 being stopped in many places. At the moment I am officially allowed 25mcg (so I am one of the lucky ones) but I don't believe it's enough for me. I was previously on 50mcg T3 at one time and did not have adverse symptoms while I was on it. Hopefully this time I can stay on some T4 even if it's a smaller amount, so will have to see how I do as I begin to adjust my doses again. I am also supporting my adrenals as my cortisol tests in the past (3 in 4 years) showed low cortisol, by using licorice, ashwaghanda, natural progesterone and now I am adding in some Adrenal Cortex too to see if that helps.

Sorry, long post, and well done if you read it all.....long story unfortunately and this is the shorter version.

 

You may find this post on another forum of interest with respect to osteoporosis and thyroid levels :

https://healthunlocked.com/thyroiduk/posts/132045680/straining-at-a-camel-and-producing-a-gnat

 

@Agapanthus you have my every sympathy. To be doing better, then have it snatched away is too cruel.

I empathise with your difficulty in getting the establishment to listen to what patient groups have found to be true about thyroid treatment. It's a frustrating nightmare.

I have very little trust in these so-called experts and always do my own research. For every health problem, for every member of my family. I have found doctors wanting too many times.

In the end, we must do what we think is best for our health, after careful consideration. As we're seeing in the UK with the T3 crisis it's too often about money, or ego, or being ill-informed and behind the times.

EDIT: spelling

 

Thank you @Arnie Pye I have had a couple of people hinting to me that the risk of fracture was considered to be small in my circumstances so it's good to see the related study about this.

As it happens, I clearly don't have high risk at the moment at least of fracture. I slipped and fell on the stairs a couple of months ago going up in the air and landing heavily on the edge of a stair on the middle of my back. To my amazement despite having a DEXA reading of -3.2 (or possibly worse now), plus severe pain from the fall, I did not fracture. It seems that the quality of bone is not taken into account when density is measured, and I reckon that mine is pretty good for now.

 

Thank you so much @Squeezy for your kind reply.

Yes, I do agree with you about the 'experts'. I have encountered some 'experts' to whom I am supremely grateful, saving me from blindness - twice (having had a macular hole in one eye, and a detached retina in the other). Successful operations in both those conditions would have been unthinkable as recently as the 1970s (later in the former) and I feel very lucky to have such good sight as a result.

The situation for chronic illness seems in a different league. Maybe it's down to the medications doled out that do not solve the problem but can often end up worsening it by the built in side effects. In spite of that the 'experts' in the chronic illness field behave as if they know it all, or at least that is how it comes across to the poor patients who are pressurised to all conform to the same mould.

We know from experience though how often the rule book has to be rewritten when the bigger picture is better understood. Sometimes too, things that were learned years ago have been forgotten (including the basics on diet and vitamins) in favour of the newest pharmaceutical medication being touted.

 

The whole paper can be found at sci-hub and I think it is worth downloading a copy. The quote about "1 excess hip fracture for every 1000 person-years" can be found in the Analysis and Commentary section:

http://sci-hub.bz/10.1089/ct.2015;27.174-176

 

Thank you @Arnie Pye

 

Hi @Agapanthus,

I recognize your story too well, and I´m sorry to hear about your struggles.
There is a reason that the book "Stop the Thyroid Madness" was written...

Treatment with natural progesterone for osteoporosis has been tested and found effective by late Dr. John R Lee.
https://www.ncbi.nlm.nih.gov/pubmed/1943883
I heard him live, years ago, and he was the kind of doctor I would trust and therefore I have kept this clinical trial in mind since then. You can find more about the treatment in his books.

FWIW, I´ve found that being very specific to the doctor about typical, and objective symptoms that I still have after treatment, while the TSH is very low, and FreeT4 and FreeT3 are low normal, has been helpful in convincing her/him that I should have a different treatment. Objective symptoms aren´t that easy to dismiss.

One of my favourite Internet doctors pubslished this today about TSH and T4-treatment. There are also some really good articles about Hashimoto´s on his site. He clearly knows what he is talking about.
http://jeffreydachmd.com/2016/10/antonio-bianco-tsh-inadequate-for-levothyroxine-treatment/

Best of luck!

 

Thank you @Helen I really appreciate you posting today - to be honest I have felt rather low with all this going on, and the constant viruses help to drag me down. None of this is helped by the fact that there is to be an imminent report due (this week) on whether the NHS will continue to even prescribe T3 to patients. I am one of the lucky ones at the moment in that I do get some from them.

Are you also in the UK? Things are pretty desperate here on the thyroid front as well as the ME one! (and a lot more besides ......)

At the start of the year when I got the osteoporosis diagnosis, I consulted with a UK thyroid forum and someone on there advised me to take natural progesterone so I did begin it then, and I actually import one from the US on her recommendation. As an unexpected side effect it has hugely helped my migraine aura, whereas nothing else I had tried ever had. On the other hand, someone who I talked to online on an osteoporosis forum a short while back said that she had consulted with a bioidentical consultant in the UK who reckoned that post menopausal women also needed oestrogen to rebuild bone as well as the progesterone. Still, I will of course keep taking it!

Yes, I agree with you with regard to reporting objective symptoms. My GP is actually quite sympathetic to me, and admits that I know more than she does about the thyroid. I try to write letters to her sometimes so I get things down in writing and so she has had a copy of the letter I wrote to the Endo, detailing my issues with migraines, and the immune dysfunction which she tested for on my request before the T4 debacle, and about 6 weeks after starting it. Some nice black and white proof I think. Obviously the osteoporosis issue worries her though, and I am about to see a rheumatologist which is another ploy to get me to take pharmaceutical medicine that they DO approve of (I will be resisting this though).

It's very odd that you should link to Jeffrey Dach as before today I had never heard of him. Someone on a UK thyroid group linked to a different post earlier today and I checked out all the links on it. http://jeffreydachmd.com/2015/05/tsh-suppression-benefits-and-adverse-effects/ I was a bit confused that there seemed to be several studies at the bottom of the page linking suppressed TSH to women with osteoporosis especially post menopause as I am. Obviously in his experience though this is not a problem as long as people do not have the signs and symptoms of being overdosed (which I did not.... my pulse rate did rise a bit on t3 only but not to dangerous levels). Thank you for the link by the way. that you did to Jeffrey Dach - I will try to read more of his stuff!

 

Please forgive me for jumping on your thread @Agapanthus, but I think you'll understand my desperation:

Two and a half weeks ago I switched back to T4 only from Natural Dessicated Thyroid and I feel awful. Can hardly move. There's ME exhaustion and thyroid exhaustion, and this is definitely the thyroid type. My heart keeps going THUD every so often. Constant headache. Slept all day yesterday. Going back to sleep again soon.

I was on NDT for a year and although my T3 went up to near the top of the range, my T4 was way below. TSH fluctuated wildly. I had no improvement in my energy, and it cost a fortune. My GP gave me such a hard time over it that altogether it wasn't worth continuing.

But now, back on my previous dose of 100mg of T4, which had me barely in normal range previously, I'm so ill! Of course, my TSH was very low the whole 13 years I was on it, so I wasn't allowed to take more.

SCREAMING!!! No heart problems, or osteoporosis or anything! Just idiot bloody doctors!!!

I'm having a blood test on Monday. I'm going to fight to take more T4 even if the bloody GP thinks it's fine based on TSH. Because it's not bloody fine!

I'll order it off the Internet if I have to.

 

You could always try NDT from Thailand. There are three different brands available - Thiroyd, Thyroid-S and TR Man - and they are the cheapest NDT I've come across and when I last checked (ages ago) the price difference between the Thai brands and brands from other countries is very pronounced. They are very popular. You can buy 250 of each kind and give each one a trial. If you get on well with one of them you can buy it in larger quantities.

As for your TSH fluctuating wildly, I can think of a few possible reasons.

1) Are the conditions under which you are testing varying from test to test? Timing is crucial because TSH has a circadian rhythm. The best time to test to get the highest TSH is first thing in the morning. See this paper on the subject and look at the graphs.

http://www.reboundhealth.com/cms/im...yronine has a distinct circadian id 18123.pdf

2) People should also test having fasted overnight because eating can lower TSH.

3) Varying the time gap between last dose of thyroid meds and blood testing can alter Free T4 and Free T3 rather than TSH.

4) Having high levels of thyroid antibodies can cause lots of fluctuation in thyroid hormone levels and TSH. Some people find dietary changes will reduce antibody numbers. The most successful dietary change is usually going gluten-free, but some people try other things like going dairy-free and eliminating products that originate from the use of milk from animals.

5) As far as I'm aware, having a low Free T4 is not particularly important when taking NDT. It usually does drop and can sometimes do so quite dramatically. The active hormone - the Free T3 - is the one that gives people symptoms when it is too high or too low.

 

I would have replied to you @Agapanthus first, but I´ll be back.

I do understand your situation @Squeezy. I think I´ve been through all kind of stages of treatment combinations, including cortisol deficiency. What symptoms, in detail, if it´s OK to post them, do you have?

Could it be that you had a lower dose of T4 from NT and that you increased the dose to the 100mg from synthetic T4 too fast? You surely know about the need for enough of cortisol to convert T4 to T3?

Thyroid antibodies?

Sorry to hear that your doctor is treating your TSH value instead of treating you. Did you check your morning temperature? Constipation? Pain? Dry skin? Cold nose tip and hands? Low pulse?

Low cortisol; palpitations, low blood pressure, hypoglycemia, no need to pee among others

Did you read about Dr. Rind´s graph for picturing if there is a problem with low thyroid hormones or/and low cortisol?

 

Thanks so much for responding right now @Arnie Pye!

I'm very wary of prescription level pharmaceuticals from abroad, particularly NDT which might be sensitive to temperature variability. With it being vital to my wellbeing so fundamentally, it's scary to risk getting junk.

I might do it with T3, as an add on for the T4, if I can't get it here. But risking ALL my thyroid intake... I feel shocking enough on regulated stuff!

1) The conditions for my tests were identical! Always the last appointment at 9am.

2) Always fasting because I never remember if I'm supposed to or not.

3) On the tests where the TSH was up and down, while the other two stayed still, I took my meds with a 2 hour time difference.

From what you say, that shouldn't have affected the TSH anyway. Big difference - from 0 to mid range!

I asked my GP if maybe I've got central hypothyroidism and the TSH is misleading. She looked at she like I was daft.

4) My antibodies went normal a few years ago! I only went gluten free last year. No idea what prompted it, but I've read that antibodies do drop year on year with thyroid treatment.

5) I told my GP this till I was blue in the face, but kept getting summoned for a lecture. I don't have much choice over GPs here, and my friends have said the others are also useless with thyroid.

I've realised that fixing my thyroid meds without taking a host of supplements might be useless.

I thought having a really good T3 might fix me. But it had no effect. Maybe I need to take acetyl l carnitine, NAD, D-ribose and all of that stuff too.

 

Possibly because the thyroid gets smaller and smaller over time, so there is less of a target for the antibodies. The usual end result of long-term Hashi's is a dessicated lump I think.

But I've also read that if thyroid activity is kept to a minimum (by giving the body sufficient thyroid hormones to achieve this, rather than the thyroid having to try and make the hormones) and TSH is kept suppressed then antibodies reduce under those circumstances too. The antibodies only attack when the thyroid itself is active. This is why people who've had thyroid cancer and have had their thyroid removed are supposed to have their TSH kept as low as possible, so that any residual thyroid cells don't start multiplying. If they do multiply then the risk of cancer comes back.

 

Hello again @Squeezy - absolutely no problem about posting re your own thyroid woes on my thread. We are all in it together here in the UK and you now have 2 brilliant posts above with some suggestions. I read this stuff endlessly but then forget the science so I am glad that others remember it.

Arnie Pie is right about the Thai NDT - a lot of people use it now although sadly it's a bit more complicated to buy it than it was in the past (cannot buy it via PayPal unfortunately and have to either do a bank transfer (can be expensive re charges) or via Western Union which is what I did. I tried it out for a bit but it didn't seem to suit me at all - felt terribly hypo on it compared with the T3, but my FT4 actually went up quite rapidly. I think I tried it at a bad time though, as I was going through a bit of a 'crash' re my adrenals, so I should have waited. I am now on a variety of things for that.....(just read your reply re the NDT before I finished typing this so I see you are not keen)

So what have you done re your adrenals? Have you tried the various things to help support them? Just wondering if that would make any differerence to you re the lack of energy. I do spend a fortune on supplements it's true and also get things via a herbalist on top, but I am lucky to be retired and have an income. I actually started this kind of process originally via Dr Myhill so got put on a basic package of supplements and am still taking them along with a mix of others for the low cortisol that I know I have (due to saliva tests).

For me it seems that I have to use mostly T3, maybe because I need more of it than i get with the NDT. I was lucky to get it via the NHS but when they find out that I have upped my dose again they won't be pleased, so I have got in a private supply from Mexico which is quite affordable and easier to buy than the NDT (although I think that works out cheaper). Personally if I was thinking of buying stuff like T4 off the internet, I would go for T3 instead. I am guessing that your FT3 will plummet again (or has already) once you are on T4 only.

I get a lot of my support and advice via the UK Thyroid Patient Advocacy site and they have links on there to help people access things like NDT and T3. Also they are very kind and supportive with people in our situation.

Has your GP ever referred you to an Endo? I actually got my T3 approved via an Endo but that was in the better days 5 years ago and of course it's near impossible now since the price rocketed. It's just that GPs seem to really know nothing about the thyroid - my GP at least admits that I know more than she does.

 

That is interesting. I have been diagnosed hypothyroid for about 22 years now, and only last year had an antibody test done for the first time at my request. It did show my antibodies were over range even though I had been gluten free for some years (not dairy free though).

 

I'm so sorry for hijacking your thread, @Agapanthus!

@Helen with a morning blood test, I'm slightly over range with cortisol. Which was a huge surprise!

My symptoms, on top of regular ME, total exhaustion! Total! Barely brush teeth. Couldn't shower for 4 days. Normally only that bad if I go out. Not been out.

Tummy is wonky. Slower than usual. Stomach gurgling, bit constipated. I'm cold.

I've not been tracking my temperature, but I'll start doing Dr Rind's method - I read about it, but never bothered.

You prompted me to check, and I was taking 90g NDT,

You're probably right - I was getting 38mcg T4 per grain, and 9mcg T3 per grain. I took one and a half, so I was on

You're probably right - I was getting 38mcg T4 per grain, and 9mcg T3 per grain. The manufacturers say that the bioactive equivalent of 1 grain (38mcg T4 + 9mcg T3) is the same as 100mcg T4 would deliver.

I was taking one and a half grains so I've dropped my dose by a THIRD!

I'm so slow. Of course I feel appalling. How on earth am I going to get my GP to let me take... Can't to the maths... Um... 33mcg more? (is that right?)

 

I look at things from the exact opposite viewpoint. I would hate to be reliant on doctors for thyroid medication of any kind. I'd prefer to take the risk and get the form of thyroid meds I want to try, and I want to take it at a dose determined by me. I've been told how I feel too many times by doctors. I pay for my own testing of thyroid levels and basic nutrients too.

 

I think the manufacturers are telling porkies. If they think 1 grain of NDT (38mcg T4 and 9mcg T3) is equivalent to 100mcg Levo then it means they think 9mcg T3 is equivalent to (100 - 38)mcg T4 = 62mcg T4.

In other words they think T3 is (62 divided by 9) = nearly 7 times as potent as T4. Personally I think that is nonsense and that T3 is 3 times more powerful than T4.

So 1 grain of NDT is equivalent to (38mcg T4 + (3 x 9mcg)) = 38 + 27 = 65mcg T4.

If you were under-medicated by a third using an equivalence of 1 grain = 100mcg Levo, then you are obviously even more under-medicated if the equivalence is 1 grain = 65mcg levo.

 

It is possible that your antibodies were very much higher before you went gluten-free - but sadly you'll never know now. I wish doctors would test antibodies more often than they currently do. I hope you felt some benefit by going gluten-free. It would have been a bit of a let-down if you didn't.