My thyroid/adrenal problems

Thank you so much for your support @Agapanthus

It all gets me so down, and I've never felt truly well since my thyroid diagnosis 14 years ago, 4 years before I collapsed with ME.

I apply DHEA transdermally for my non existent levels. But that's not for the adrenals really? Like you, I've read an enormous amount but it's drained away.

I probably should do the 4point saliva test.

Cannot think at all. Even worse than normal ME. I'll have to reread your very helpful message after a sleep.

@Arnie Pye aarggh maths! I read T3 is 4x stronger, so multiply by 4?

 

I know some people do say T3 is 4x stronger. Based on my own experience I don't feel it is that potent, but I accept that some people can get a huge kick from, say, 6.25mcg T3 per day. Some years ago I read about someone who went from being bedridden to being back at work with the addition of just 5mcg T3 per day. It suggests that it is a personal thing what people get out of T3.

 

Please God by me! @Arnie Pye! Are u in the UK? Amazing that you handle all blood tests etc yourself.

EDIT: I'm such a twit - of course you're in the UK! Only a couple of days ago I wrote to you about the crap NHS and stuff. See - brain malfunctioning appallingly.

 

Yes I am.

See this link : http://www.thyroiduk.org.uk/tuk/testing/private_tests.html

I use Blue Horizon Medical @ Spire when they have special offers on and also have some coupon codes allowing money off or extra tests for free. Phlebotomy is included with the Spire testing.

https://privatebloodtests.co.uk/private-blood-test-for-comprehensive-testing-in-blood-2657.html

I use the above test when I can get free tests included and I always include Free T3. I've also previously opted for zinc and copper testing when they had a special offer allowing three free tests.

If I was going for something cheaper, I would use one of these tests, but phlebotomy isn't included and has to be organised by the patient or extra money has to be paid out, although finger-prick testing is acceptable for some testing and that adds nothing to the price :

https://www.medichecks.com/thyroid-health

https://bluehorizonmedicals.co.uk/test-catalogue/thyroid-blood-tests

Both Blue Horizon and Medichecks have regular offers which are worth checking very carefully before buying.

 

@Arnie Pye such a sensible thing to do - why bother with bloody annoying, uneducated doctors when you know what you're doing? Thanks so much for the testing info. It's an excellent help.

 

@Agapanthus I saw an endocrinologist a couple of years ago who was all about the TSH . It's SO hard, IMPOSSIBLE, to screen them ahead of time!

I got the NDT through a private doctor who I've lost confidence in. That's why I've gone back to thyroxine. Feeling so awful now, I'm not sure what the hell I'm doing.

I'm trying to formulate an action plan for my thyroid. I want to order some T3. Would you mind sharing where you get yours from? Send me a private message if you prefer. And I think it was you who gets progesterone cream? If so, could you please tell me what brand, and from where? I'm also spending too much on that from a compounding pharmacy. And DHEA cream.

The next thing is the cortisol saliva test. Must do that.

How marvellous that you saw Dr Myhill! I hope she helped you. I've read most of her very detailed information pages, and wonder if I should do some of her tests. But it all works out hugely expensive. Things like her Metabolic Profile that tests how much CoQ10, acetyl l carnitine, NAD etc you have. But it's £500 with her interpretation and recommendation. I probably need everything so I guess I'll just take the pills.

I'm working on taking multivitamins, Magnesium, ubiquinol, and fish oil along with my prescription pills. That's hard enough to get down daily. Adding NAD and acetyl l carnitine... I just can't eat enough food to stop the pills repeating on me.

I wish I could do it all intravenously!

I got rhodiola for my daughter. I should probably take some of that for my adrenals...

 

Hi again @Squeezy. I will pm you with the details of where I got my T3 from and the Natural Progesterone cream. I got both of those bits of info via the Thyroid Patient Advocacy UK group, plus the fact that I got the NHS T3 originally via their useful list of Endos who at the time were OK about prescribing T3. That was 5 years ago though and things have moved on.....

I would try and get some support if you start the T3 though, and go VERY slowly with it and reduce the T4 at the same time.At the very least post on one of the thyroid forums as you do it and someone will help you. I bought a book by Paul Robinson about taking T3 as there is nothing much around on T3. He is not a medically qualified person but a well informed UK patient. He used to run a T3 forum but has now stopped but the group has passed on to some other people. It's mostly people on T3 only though and I am not that at the moment. He encourages you to take Temp/Heart rate/and BP several times a day as you start and then you can track these 'vitals' as a guide to how you are doing. If you take too much T3 at once then your HR might climb too fast, so hence taking it slowly.

Of course you know something about T3 as it's in NDT but in much smaller amounts. The thing is that my vitals were OK (my HR did increase from T4 usage, but I was a walking zombie on that!) but I ended up with osteoporosis so the 'experts' believe I caused it by taking too much T3.

I never actually got to see Dr Myhill but I did the Mitochondria test and then had a couple of phone appointments with her, and did another test a few years back. She was too far away for me to get to, so I ended up seeing someone in London (from the far west of Cornwall ha ha!) as I have no car, but could at least go by train. He works in a similar way to Dr Myhill and I had the Mito tests redone which at least showed improvement after about 4 years I think - had changed my diet by then and taken some of the supplements. I never could tolerate some of them - these included the Acetyl L Carnitine, even though I had the lowest Carnitine scores on her records. I do now put it on transdermally via some magnesium oil so get a bit in there. I actually buy a few of my vits/minerals via Dr Myhill as her Mag Oil has DMSO in it which then helps other things like my Carnitine through the skin.

Re the costs of it all.... I no longer really have many tests done. I cannot really afford it alongside the supplements and the herbal medicine I take! I guess some of it is a placebo but it's hard to know what to do for the best.

 

@Arnie Pye I am impressed by your level of knowledge on the whole thyroid subject. I have read stuff endlessly in books and online, but seem unable to retain the science part of it in order to repeat it usefully to anyone else (even though my Dr thinks I know more than she does ha ha). She once asked me if I had ever thought of training to be a Dr.

Are you on T3 only yourself or on NDT? How long have you been on it and do you completely self treat or have any help via the NHS at all? Are you diagnosed as hypothyroid by the NHS?

 

@Agapanthus I take T3 only. I am diagnosed with subclinical hypothyroidism by the NHS rather than overt hypothyroidism, and they didn't want to treat me for it. I had had TSH mildly over the range for many years, but my Free T4 and Free T3 were always in range (but usually very low - bottom 10% of the range). After begging for ages I was prescribed Levo eventually and very reluctantly and in a tiny dose, but it made me feel absolutely dreadful. (I didn't admit that to the doctor though!)

For many years doctors thought my complaints of pain and fatigue were the signs of an attention-seeking, mentally ill waste of space, and I was just ignored, fobbed off, and shouted at over and over again. I had already started investigating thyroid forums the year before I was finally prescribed Levo. When it made me worse I thought I had two choices - give up completely or help myself - I chose to help myself. So, I tried higher doses of Levo with the help of Dr Gordon Skinner who I saw privately (you may have heard of him). That didn't help, so I tried NDT for a while, then eventually went on to T3 only. I still feel as if something major is wrong with me, but with T3 I can just about function at a very low level.

I first started taking T3 in 2013, and although it helps a lot it hasn't made me well. My health continues to decline. And I'm prepared to believe my continuing health problems might be ME/CFS, or undiagnosed viruses, or they could be hormonal, or they could be nutritional, or autoimmune, or... or.... or... I simply don't know, and I'm still floundering. The ironic thing is that my mental health has improved a lot on T3, and yet doctors have only ever offered me anti-depressants, which never, ever worked, and they have continued to believe that my thyroid is healthy. I have admitted to doctors that I test and treat my thyroid myself, and I won't discuss my thyroid with a doctor beyond telling them that. I refuse TFTs on the NHS.

 

@Arnie Pye Yes, I have read the kind of story that you tell a number of times on thyroid forums. In fact if for the fact that I had not been diagnosed so many years before, it could easily have been me I think. I was diagnosed around 22 years ago when I was 43. The first GP I saw was my usual one, and I told her that my PMT symptoms (overwhelming fatigue mostly) were getting worse and the periods of time were longer. A friend had told me that it could be my thyroid so I asked for a blood test and she refused to even do one.

I was so angry that I joined a new practice, and that Dr did a full blood test, and found that my thyroid was borderline hypo. However he waited just about 3 months and retested and because it was going in the wrong direction, he was willing to start me on Thyroxine. It still continued to go in the wrong direction so I ended up on 100mcg pretty quickly. But I was only about TSH 6 something I think, so not up to 10 which I think they demand now. I was actually OK on Thyroxine for a few years, but if it was now I don't know if they would have let me even start it.

Yes, I know about Gordon Skinner although I never knew him myself.
I sympathise with the thing of feeling that there is something else wrong as well as the thyroid. I presume you did all the 'right' things re the adrenals. I know I have and I too was not quite right on T3 only, although I felt I had more stamina on it, and sometimes I was quite well on it. Unfortunately I had so many other issues which were not directly to do with the thyroid but I could not sort them out and even now I don't know what is what.

Now most of those are actually improved but back on the T4 in part has meant my energy levels are down again. And I have these pesky viruses all the time so in the winter I feel ill a lot and so further fatigued. I am sorry that you are declining. It is so hard to sort the things out. I have tried most things by now that I can afford or what seemed appropriate but nothing quite worked. Ironically, I was the best I have been last year before I saw the Endo who started off my decline by reducing my T3 (on grounds that it caused my osteoporosis). It's been hard to combat and argue against that one....

I did try LDN amongst other treatments but sadly unable to tolerate it. I know it helps some - has it been on your list yet that you have tried?

 

I've never had a TSH of 10. Mine never got above about 6. I think that some of the more compassionate doctors might treat with a TSH over the range if antibodies are positive and the patient has symptoms. My antibodies never were positive, although I haven't had them tested for ages, so something may have changed after all this time for all I know.

I have wanted to try LDN but I don't know how to get hold of it, and haven't pursued the idea. What stops me trying lots of things is lack of money. I would love to get various non-thyroid-related hormones tested if I could afford it, particularly sex hormones, but all the sources of tests I've looked into are hugely expensive. I've considered trying DUTCH testing done by Regenerus but I'm not (yet) convinced of its accuracy.

I have optimised all the nutrients that get mentioned on thyroid forums and I keep them optimised. I've taken supplements which are claimed to be good for adrenal health. I've done cortisol saliva tests (cortisol was high) and taken adaptogens.

I have plenty of other things in my medical history besides thyroid dysfunction, and some of those things continue to have a major impact on my life years after they were diagnosed and/or treated (often badly).

I haven't been diagnosed with osteoporosis, but I imagine I will be eventually. If the risk of osteoporosis can be passed on in the genes then I'm destined to get it. But my bone density was already below the average for my age group nearly 10 years ago, and that was before I started on any thyroid treatment. I have developed many of the same health problems as my mother. She had (amongst many other things) very severe osteoporosis. The thing about my mum is though, that she wouldn't say boo to a goose, whereas I do my own thing as much as possible. She did exactly what her doctors told her to do, took the pills and potions they prescribed, never complained, and was very compliant. It made zero difference to her bone health though - she still ended up with multiple cracked vertebrae and crumbling hips, and zero medical or practical help from the doctors.

 

Great advice - I'll research T3 thoroughly before touching it - last thing I want is a heart attack.

Oh my gosh. I wish that you could take it. Our bodies are so strange - rejecting what they need the most.

It is a bloody nightmare working it out. Thank heavens for helping each other.

 

@Arnie Pye wont the NHS test your hormones for you? Progesterone and testosterone at least? For example, I came off the pill 5 years ago, at age 37, when I read about how appalling it is for your health. After 6 months my periods were still lasting for 3 weeks. So I saw my GP and got a host of hormones tested.

Resolving the problem was handled really stupidly, but I got the flaming blood tests! (But not in the UK, in Israel, where I'm currently living, where they also have a public health system).

I'm so sorry to hear about your Mum's horrendously painful ordeal. I fervently hope you are spared it.

Your harsh experience at the hands of doctors, Arnie Pye, is so bloody awful, and a couple of my friends here have been through it recently too. They're reeling in disbelief and hurt. I'm one of the lucky ones who had a clear cut case of autoimmune hypothyroidism at age 28. No idea what my numbers were because I was a totally trusting ninny 14 years ago. Numbers high, says the doc, take these pills. I was beyond exhausted for years after anyway - not like ME - I could push through and not crash - but put it down to the aftershock of my husband's accident and caring for everyone. But now I'm sure it was my thyroid being undertreated.

When we came to Israel for work, suddenly I was given my test results! Oh my! Revelation! Low, low, low. The fight was on. And suddenly ME. Absolutely no bloody forthcoming on that here. "Chronic Fatigue" isn't as bad a label here as there. When we come home next year, I'm not even going to mention it to my new GP! NO WAY!

I'm sliding ever down too, and it's terrifying, isn't it? I've the same list of what ifs. I've corrected the hormonal problems I've found, and still feel awful. Been tested for known autoimmune illnesses - none. So I should throw some money at nutritional deficiencies? But I'm taking mulitvits - what can I do if they're not being absorbed? <screams!!!>

I LOATHE the, "it's depression! You're depressed! Take these magic pills!" crap. I've suffered from depression since I was 17, and I love my magic pills. ME and thyroid and NOT depression, dammit! I'm delighted for you that you've had the courage and intelligence to burn your own path and found that you were RIGHT! You need T3 in your brain to raise your mood, not what they were pushing.

Have you read anything from Mary Shomon? She's an expert thyroid patient who writes on VeryWell.com. There are a lot of US doctors she interviews on there who believe in treating patients like you. 0.3-3 TSH is the range they're supposed to use in the US! They would be giving you what you need! *Facepalm*

 

Interestingly, when I was diagnosed hypothyroid over 20 years ago, I never had my antibodies checked and in fact knew nothing of such things for many years. Earlier this year I asked my GP for one of those tests and it was positive. I do think that when I had my tests done so many years ago, that they were only just beginning to tighten up on the whole thing and I struck lucky with this GP (well until I became ill again....).

I do sympathise over the lack of money issue. I am lucky now to be retired and we don't have a big income but we own our tiny house and don't run a car so our outgoings are modest (and on lowest Council tax band too). I tried LDN when I was on ESA and it cost then about £30 a month and there was then only one place in the UK who dispensed it and that was in Glasgow. Not sure if a 2nd one set up, I have a feeling they did. It's not horribly difficult to obtain and the Glasgow people even used to have info about private Drs who could give the prescription out over the phone for a modest amount. There is a good UK LDN website who would help with the whole thing if you ever felt able to, but yes, it's all money....

I have never fully understood the sex hormones thing and why the normal GP cannot do them? I thought that there were some basic tests that they could do (never asked myself as now 15 years post menopause).

Sorry to hear that you have other things on top that are not treated well. I don't have much faith in Drs now for very much and I don't really like the lack of curiosity and how medicine has changed into a tick box approach. I was lucky with my eye surgery and haven't had too much else other than gut issues which I now self treat entirely.

I have read up a lot about osteoporosis and there seem to be so many reasons it can develop. Did they send you for a DEXA then re your own bones 10 years ago? They seem to rarely do that in this country unless you fracture first. Despite not liking the Endo, I am grateful that he did send me for one, as at least now I know and can do my best to prevent further issues though despite wanting to exercise I can't do much of course. I have optimised my supplements though so I take D3, K2 and boron plus a few other things. When I fell downstairs and landed heavily on my back 2 months ago I did not break any bones, so I reckon my bone quality is good still if not the density. They cannot measure that as yet.....

 

I've had a hysterectomy. I've never managed to tolerate HRT. So they already know what the results would be (if they thought about it) - everything would be low or possibly even zero. But since I can't tolerate HRT I don't know if there is any point getting hormones measured. I would like to try bio-identical hormones to see if that helps, but I have no idea what optimal levels of hormones would be for someone like me, so I wouldn't have a clue what I would be aiming for, nor what dosage would be required. And the NHS only prescribes synthetic sex hormones anyway, which I wouldn't take.

I don't ask for anything from the NHS very often. I got fed up of hearing "NO!", and being fobbed off over and over and over again for years and years and years.

Going gluten-free helped me absorb nutrients much better. If you aren't already g-f, it is worth trying. You can always go back to eating gluten if it doesn't help.

I can imagine that must have been a shock to the system! Being treated like an adult with an interest in her own body - wow! I can't imagine that happening in the NHS, ever. And even when the remains of the carcass of the NHS gets thrown to the wolves I still can't imagine things changing. The doctors we see will still be the same doctors however the system is paid for, and they have all been trained to believe that patients are too stupid and too simple to be trusted.

 

Thanks, I'll look it up.

I think, but can only guess based on what happened to me over many decades, that someone put a flag on my notes in my teens (which is when getting treatment for anything became very difficult) to say that I was a hypochondriac and attention-seeker and a waste of space. And once that judgement was passed the sentence is life-long. Every word out of my mouth was (and often still is) assumed to be a lie, getting treatment for anything has been resisted fiercely by almost every doctor I met, because of something I apparently did to upset a doctor in my teens. And I'm nearly 60.

So some doctor set himself up as judge and jury, and I was tried and found guilty when I was in my teens, and I never even knew there was a court case - if you see what I mean.

And to make matters worse, medical record keeping is so bad that even when information was available that proved I had serious health problems and reasons for asking for help it was never recorded in any health record summary. So if I told a doctor I had a history of very severe endometriosis it was assumed I was lying and exaggerating and it was ignored. I've bought a copy of my GP records now. I have the evidence.

And on top of all this I get doubted by relatives and friends because their relationships with doctors have always been good. So I'm disbelieved by them too. To be honest, it has all had a devastating effect on my mental health over the years.

I had a DEXA scan done 20 years ago when I volunteered for some research being done to collect data on bone density in women at different age groups. My results were excellent. My bone density was in the 75th percentile when compared to other women my own age.

I had another DEXA scan done about 7 years ago. That time my results showed my bone density had dropped to the 49th percentile when comparing to other women my age. Since at the time I was still a little bit below the average age for menopause, I will continue to lose ground in terms of bone-density when comparing to other women my own age. If I felt better I would do something about it. But, like you, I don't have the energy to do the exercise I need to do to maintain my bone density.

 

@Arnie Pye my foggy brain is telling me that bioidentical progesterone is good for post-menopausal woman to preserve bone density. Definitely look it up. I'm too exhausted to check it, sorry.

I'm so damn tired. So sorry for your bad, horrible, time with doctors. I'm gonna order some T3 and sort myself out. Too fed up with feeling like I'm dying, but getting nothing but crap. Jesus, today is a bad one

 

Sorry to hear you are feeling really bad today, @Squeezy

Thanks for the info on progesterone.

 

I'm so dejected, even though I expected this. Can barely think. Trying to wade through thyroid info to help myself. After 3 weeks back on T4 only, my blood test results are back to stupid.

TSH barely above 0. T3 a shade into normal range. T4 just under mid range.

WHY? If they only did TSH, they'd take me off it completely! Jesus, feel awful. Wish I hadn't come off NDT. I though I felt exhausted then...

Don't know if I should order T3 and dose myself, or go back on NDT. Oh dear. I came off it cos I thought I had pooling, with no way to check my Reverse T3... I'm a mess.

I so need a doctor to take charge of me! Too dead to cope.

 

Sorry not to have written on here recently and also not replied to your message @Squeezy - unfortunately had a medical emergency non ME related on Monday. My right eye which had an op for a detached retina last year, and same eye had cataract op (cataract comes very quickly post vitrectomy op), showed signs of detaching again. If not treated quickly it can develop very soon into blindness and I had to somehow reach a hospital 45 mins by car (we have no car and you cannot drive with eye issues like this or drops in eye) - takes much longer by public transport.

Kind neighbour was an absolute hero and he took me very early and stayed for over 12 hours while I went through the mill of exams - yes it was detached, and they decided if they could operate that day (they only operate on a Monday afternoon and all day Tues so at least I had picked the right day - last time I had to go to Bristol from Penzance which is an 8 hr round trip and involves booking a hotel). Hospital was on black alert so not enough beds!!! Surgeon didn't know if he could fit me in so would only do local anaesthesia on a 1 hr + op which rendered me a nervous wreck but had to go with it if I wanted it done.

Reasons for it going again are not great, and I am now concerned that more chance of it happening again and each time it happens the prognosis not so good for sight. So far so good though and I have a gas bubble in the eye for next 6 weeks and have to posture until Monday - that is lie on my front or side for 45 mins out of every hour. 15 mins spent in loo, washing, eating or doing copious eye drops.

Just to make things worse this time round (and this is my 5th eye op as had 2 on other eye) - have never had issues with my eye pressure but that is up too and have had heavy duty drops and tabs to take to make sure I don't also end up with glaucoma which is another source of blindness!!! I wonder what that is about......or any of it really.....apparently it's very rare for it to detach after an op a year ago, but it seems I have exceptionally sticky vitreous which increases the traction in the eye. I also now have scarring in there now on top which is bad news.

The week topped off with someone fraudulently taking £3,000 from our credit card though I think that will get sorted and we won't get charged.

So will be back to the thyroid discussion when I can!!