At the risk of sounding very foolish - I'm going to run this by you anyway.
Briefly, my hypoT history is that I had a parathyroidectomy and hemithroidectomy a little over a year ago. I was diagnosed with chronic fatigue syndrome in 2005, which, so far as I have learned with research, probably means that I have been hypoT for a long time. I was prescribed Levo 50mg, but found that it wasn't satisfactory. Dr wouldn't prescribe more because I was "in range" at 3.6. Bought Thyroid S and many symptoms improved (at 3 grains), though I was still very tired. My bloods in Dec were close to optimal - but still very tired.
Got scared of what they would say about my being on NDT and dropped back to Levo, but took one grain of NDT in addition. Bloods in April were not bad, but not so good as Dec,
Back to NDT . 3.5 grains. Some hypo symptoms still persisting -heel pain acute, severe fatigue (although I am still working), low mood, wrist pain, but slightly better than it has been.
So! to the point of my post.
I have been feeling absolutely S**t this week. Low mood. Low temperature. Sore feet. Sore wrist. 4llb weight gain.
I don't have a television, only watch films at the cinema. Usually rom-coms or feelgood movies. However, while I was off work with back pain recently I borrowed and watched Game of Thrones. It was everything I would normally avoid watching - bloody and violent - but it was strangely addictive and I watched it to the end of the 5th season. There were several scenes that I couldn't watch ( stabbing, cut throat, guts hanging out, etc).
Even anticipating a reaction from you that I'm a softie and of course there is no sense in this - censorship is rubbish, etc.
Do you think that the adrenalin rush (if that's what it is), caused by the scenes that I found horrific, could explain my recent 'dip'. ( err - plummet, actually)
Might be worth thinking about for anyone with adrenal fatigue.
Written by
looselywoven
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I would have the following checked - B12 - Ferritin - Folate - Iron - VitD. If they are low in range then you will have to treat. Please post your results with ranges. Thyroid meds do not work well when any of the above are LOW in range.
Apologies if you have already posted them
PS .....
I see it was suggested in your thread of 4 months ago - to have the vitamins and minerals I mentioned above tested. So did you you have them done ?
What supplements are you taking ?
The 24 Hour Saliva Test done privately with Genova Diagnostics would indicate more than the NHS test you had done.
Thanks, Marz. No I haven't had the tests done yet - I kept putting it off while I was changing dose etc. It's more money than I can really afford, but I know it needs doing. I have been supplementing B12 and vitD for some time now. I take sublingual b12. If I miss taking it for a few days my tinnitus comes back.
I think you will have to buy B12 injections on-line and inject him every other day until the tinnitus abates. Alternatively pop over to Crete and buy them OTC - syringes as well It is a neurological symptom of B12D and should be treated as such.
On the PAS website there was a questionnaire sent out to 1000 PA sufferers asking them to detail their most troublesome symptoms. Tinnitus was almost 100%.
Jarrow Methylcobalamin 5000mcg is the most popular on here it seems - from amazon. Take with a GOOD B Complex like Thorne Research. The injections are Hydroxocobalamin.
Thanks for that Marz, had not heard about the 'almost 100% Tinnitus PAS members questionaire.' That is quite an amazing outcome.
Hubby's thoughts on injections are not good, he'd hate them. He takes B12 5000iu supplements daily, (not sublingual,) I have kept him on the same B12's as he had high blood level of almost 1000 on last B12 blood test, so does that mean anything or prove nothing at all ?
I had read about vitamin B12 sublinguals being on a par to vitaminB12 injections in trials.
Once supplementing - B12 testing is absolutely pointless. Your GP is wasting NHS money. This point is laid down in the Guidelines for Folate and B12 Deficiency and should have been read by your GP and staff.
Some sub-linguals can be as good as a B12 injection. There are different types of B12 and suit different people in differing ways. If he is taking a tablet/capsule then you may still have an absorption issue in the stomach/gut. Is it Methylcobalamin ?
I have weekly injections and take sub-linguals in between. There are also patches and sprays for under the tongue.
Is he also taking a B Complex to keep all the B's in balance ? Low magnesium is also implicated in tinnitus - maybe the Mag Oil Spray by Better You from Amazon.
Hubby's B12 blood level was 345, which was not that low, being under 500, I knew it was low, so he supplemented (Methycobalamin, but not sublingual) These tablets were the ones he was on when his b12 bloods elevated to near 1000, so he is still on them. Unlike me on sublinguals.
Unfortunately back then we knew nothing about NOT supplementing before having B12 bloods done. Dr. just redid B12 alongside many other tests.
*Could he still be a candidate for PAS/B12D do you think Marz or not likely ? I have never got my brain round the B12D/PAS diagnosis thing.
I can see him running a mile at the mention of injections, though maybe a move over to sublinguals ?
He takes a good quality B Complex. Now just started on the Ginkgo Biloba for another tinnitus trial.
I will check out your suggested Mag Oil M. as I just read your link and says is also good for cramps and arthritis etc., alongside tinnitus. Also will look at your Thorne research B complex and compare with our Phoenix Nutrition.
The high B12 reading would of course have been very skewed as he was supplementing. The tests - like many - are not perfect either ! You need to be off B12 for months if you want a true/better reading - so just not worth it. go by the initial reading he had at the beginning and assume he is low.
The blood test shows what is in the blood and ONLY 20% of that is available to be used in the cells - where it is needed. Due to bound and unbound B12 - not sure which one reaches the cells
Go to the website of PAS and look at the symptoms list to check hubby out for PA. B12 is involved in the myelin sheath that protects the nerves - so when the sheath is compromised in some way - then the nerves are exposed more and over stimulated.
Having been hypo for twenty two years and having m.e - which for me sadly is not just badly treated hypo - I would say yes anything that raises your stress levels sets off a reaction in your body that can lead to a crash. For me I am bed and housebound still after five years of being ill, I am on t3 only and hc and before I was on hc anything stressful from a phone call to a household crisis would crash me.
I avoid these like the plague. (my husband loves them, but kindly turns them off the moment I walk in the room).
Anything like that would trigger a stress reaction and a subsequently crash for me. When at my worst I could not watch even an exciting tennis match, and the ping of an email coming in would trigger a flood of adrenalin and tachy.; even now I rarely watch the news - why absorb a daily dose of other people's stress. Stress is cumulative - no need to add to your load un-necessarily!
My adrenal reactions have improved a little, after years of avoiding as much stress as poss. listening to relaxing music and strengthening with vits., mins and glandulars. Adrenals need lots of pampering
I'm glad to hear other people's struggles with watching TV. I find this one of the most difficult things to explain to friends. Yes, I spend a lot of my time in bed, and a lot with the TV on. No, I am not watching all the latest shows people are talking about or catching up on lots of classic films, because I cannot manage the stress OR follow cleverly told plots. I get bored or fed up very easily, too. I watch sitcoms, comforting mysteries like Jonathan Creek, panel shows, cooking shows, etc, etc.
Since I upped my dose of NDT I have watched Hinterland and thoroughly enjoyed it Friends were very surprised and I really congratulated myself. Have also (slowly) started reading novels.
Did you switch from a big chunk of your Thyroid-S over to levo in one go? And then back again soon after? Making that kind of change would have stressed your body a lot. When people think of stress they almost always think of psychological stress. But physical stress is just as important, if not more so, than mental stress (in my opinion) in thyroid terms, and by switching from something that was helping to something you knew didn't work for you, your physical and mental stress would have shot up and stressed your adrenals a lot.
looselywoven wrote :
"Got scared of what they would say about my being on NDT and dropped back to Levo, but took one grain of NDT in addition. "
People feel this tremendous urge either to "confess their sins" to their doctors about self-medicating, or they hide what they are doing and make themselves sicker in the hope of pleasing their doctor. One of the best responses to that idea that I have read came from helvella very recently.
He wrote :
"It is very, very easy for me to say this, but throw out the word, even the thought, that you are confessing anything. You are advising him that this is what you have been doing - and, really, saying his only proper function is to help you improve further. You are not asking for a lecture. If he cannot help, then you will simply have to carry on as you are - hopefully gaining some more improvements by whatever else you decide to do."
It wasn't quite like that, Humanbean. I was on 50mg Levo for 6months but it wasn't enough. The DR wouldn't prescribe more because I was in range at 3.6. I bought some NDT and took it up from 1 to 2, then 2.5 then 3 grains. Was feeling generally ok, but stil tired. Then I got wobbly about it and went back to Levo. I went straight to 50mg of Levo with 1 grain of NDT. I might be scared of admitting that I was on NDT - but I absolutely was NOT going back to just 50mg of Levo and the rubbish I felt! I stayed at this for 4months and largely speaking was happy with it. Was managing okay. No brain fog since the beginning of the year. My biggest problem, though, was my wrist pain, trigger finger and heel pain. My wrist pain, in particular, was causing problems because I work with my hands and was finding it difficult to do my job. Sometimes I couldn't even wipe my bum! I became convinced that it was the Levo causing the problem so I've gone back to NDT. I replaced the 50mg Levo with 1 grain NDT - so that was 2 grains. I increased by half a grain after two weeks, then two weeks later another half grain.
My heel pain hasn't improved but my wrist pain is slightly better, manageable at least. Trigger finger much improved. When I've been on this dose for six weeks, I'll get my bloods done.
Regarding Helvella's post - I too saw that took it on board. It was just a bit of a wobble before - a throw back to all the fears of buying medication off the internet.
I am absolutely not prepared to spend years feeling ill just because of the doctor's ignorance or incompetence. This is my life and I intend to live it.
Many thanks for your comments.
I love this site - visit it every day. It's such a rubbish condition to have and so many hoops to jump through, it seems, and so much to learn.
With the wrist, hand, and foot pain I would predict you have lower than desirable Free T3 i.e. you might not be converting very well. I hope you can get Free T3 tested next time you get bloods done. I got rid of my plantar fasciitis and general sore feet problems when I started taking T3 only.
Have you had calcium and PTH tested recently ? you need to know there are no parathyroid problems going on. It can take a long time to recover from PTH surgery and it does mess up thyroid levels, been there myself.
Hi Bantam12. No I haven't, but the thought hadn't occurred to me. My last calcium result was extremely close to the bottom of the range. I remember how bad I had felt when it was close to the top of range before my surgery, so thanks for reminding me - I'll sort it out.
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