Just a mini rant ...

[BeansMummy]

I am only venting here because it makes me feel better

I have had a shoulder problem which was successfully treated (apart from the lengthy waiting lists and usual fighting with the NHS), I was discharged last November, but the consultant said that it may possibly recur. I had never thought it might be related to my thyroid issues until I joined this site, but that's nothing new.

My GP has happily referred me back to see the consultant as the problem has started again but, although I know I really shouldn't be surprised, I am not allowed to just go back and see him, although he did say I could just ring up. Apparently not, my mistake.

My GP says, unfortunately, that I have to start the entire process from scratch . I had to wait 2 weeks for my GP appointment, another few days to be sent the paperwork for me to book the telephone appointment, and then I had to book it myself. I now have a "telephone assessment" booked for the end of next week, but it isn't to discuss any clinical symptoms! Lucky I don't have anything better to do.

So, I know what the problem is, my GP knows what the problem is, and the consultant knows what the problem is - but I am now on a waiting list for a telephone appointment, and will then be on another waiting list for the follow-up assessment, and then on a waiting list ... blah blah blah. I guess it will look good on the NHS figures because it will show that I haven't really had to wait very long on each list (what's a few weeks on each list when you are in extreme pain and on morphine).

Rant over

[Marz]

Sorry to hear you are suffering. Poorly shoulders and thyroids do have some links Have you considered taking T3 ? You don't mention your levels or doses....

[BeansMummy in reply to Marz]

Thankyou. Sorting out my medication is still a work in progress and relatively under control but no, I haven't thought about taking T3. I'm still working my way through my deficient vitamins, iron etc. with my GP and endo, it's a bit of a banging-my-head-against-the-surgery-wall scenario.

I will read up on shoulder/thyroid connections so that I feel better informed. Are you saying that there is an issue if I am not properly medicated? I am on 75mg levothyroxine.

My last test results in January were:

TSH 1.06 mU/L (0.35 - 5.5)

Free thyroxine (is that T4?) 16.2 pmol/L (10.5 - 20.0)

Free T3 4.5 pmol/L (3.5 - 6.5)

Vitamin D 20.7 nmol/L - am severely deficient and taking prescribed 1600IU Fultium D3 daily.

Serum ferritin 49.0 microg/L (10 - 200)

Serum folate 12.8 microg/L (3 - 20)

Iron 9.1 micromol/L (11 - 30) No action until vit D sorted says endo

Transferrin 3.09 g/L (1.8 - 3.6)

Transferrin sat 13% (16 - 50)

Serum B12 267 (180 - 900) Will have to self-treat as GP/endo won't

[Marz]

Am not sure what the issue could be. As your D is so low I do think you will feel much better with your poorly shoulder when it is Optimal/Top of the range. Also your B12. They both seem so involved in many mechanisms in the body. Have you read the B12 and VitD websites - can post them if you would like. They help improve the conversion of T4 to T3 too. Your results look good for the thyroid.

Your Ferritin - stored iron - is low - so not a great deal in storage in readiness for when needed. Am horrified that your GP/Endo refuse to treat your B12. Only about 20% of that result is available to be used in the cells where it is needed. Hence those that know/treat B12 deficiencies say it should be near the TOP of the range. Also the Active B12 test is more reliable - so may be good to have before you start self-treating. Information on the main Thyroid UK website.

Sadly it is not part of medical training....and Docs often miss B12 deficiency thinking it is something else. Do you have any gut/absorption issues ? In Japan the range for B12 is 500 - 1300

[BeansMummy in reply to Marz]

You made me laugh with your comment about Japan - I'd actually told that fact to my GP!

I probably have read the B12 and D websites, it is only thanks to info I have read on this site that I pushed my endocrinologist for more blood tests, "pushed" being the operative word as she wasn't keen, but I was very convincing and I cried a lot

I have asked my GP for help with my B12 as I want to get the level up - she will not, under any circumstances, offer injections or prescriptions as I am "in range", so I know that I have to do something about it myself. I told my GP that people with Hashi's may have absorption issues, whether or not she believes me is another issue, but I shall continue saying it.

Years ago, I used to have dreadful IBS which controlled my life, an "illness" a consultant once told me just meant that they didn't really know what was going on, and the NHS weren't able to do anything, despite the fact that I sometimes passed out whilst at home with small children. I was put on an exclusion diet by a private dietician - it was brilliant, and highlighted a few things I was reacting to. The whole diet took many months and, at the end of it, I was able to introduce those foods again with no ill effects. I have never suffered any gut issues since.

Many thanks for your thoughts on my test results, I'm glad they are relatively OK, and I seem to be working in the right direction. I love reading your advice, both now and to other people, it has been really helpful.

[Marz in reply to BeansMummy]

vitamindcouncil.org/health-...

Am not suggesting you have anaemia - but the connection was interesting I thought

[BeansMummy in reply to Marz]

Just had a quick read through that link, thanks. My doctor said I am being classed as anaemic, as my iron is below range. That link talks about red blood count, which just reminded me that mine has been flagged up as "too high" on my last couple of blood tests:

RBC 5.20 (3.8 - 4.8)

I forgot all about that, as I had been querying what that means, but kept being told not to worry (ha ha ha). I will add it to my list of things to nag a doctor about again. What a nightmare it is when you have to figure out what it all means for yourself.

[Marz in reply to BeansMummy]

Red blood cells carry oxygen around the body. When there are too many it could be a simple case of more water needed - to keep the blood balanced Again the VitD may help....

[BeansMummy in reply to Marz]

<swigs another pint of water>

What would I do without everyone here

[Marz in reply to BeansMummy]

No idea if that's the reason in your case - so check with your GP too.....

[puncturedbicycle]

If your consultant said you could just ring him, can't you give that a try, or write him a letter reminding him that he said you could just ring him. That's not your mistake!

May I ask what kind of shoulder issue you have? I had a rotator cuff injury about 18-24 mos ago which was pretty excruciating - used to wake me in the night - and took at least a year to go away and now that it's finally all healed the other one has begun to go the same way. I only had about six months of respite!

I've never had any success taking a muscular injury to the gp so I never bothered going but I may go now to see what they can offer me. Shoulder pain can be unexpectedly debilitating. You have my sympathy.

[BeansMummy in reply to puncturedbicycle]

Thanks for your reply. My GP said that even though the consultant said I could ring, that isn't the way the system works! I was officially discharged from his care. I haven't let my shoulder get to the level of pain I had before, so I can cope with it right now, but I know it needs sorting by an expert as I know it will get worse. I used to muddle through general aches and pains, but the shoulder problem was beyond bearable before, and I think the GP was my only hope.

I had a frozen shoulder and a substantial partial tendon tear. The frozen shoulder needed physio, but that would have caused more problems with the tear apparently, although I did have exercises to do. I had two steroid injections, which achieved nothing; then another one which was great and seemed to help for a few months. The pain restarted, and it was found that I had calcium deposits in the shoulder, which were "needled" and successfully removed, and another steroid injection, and I have had no problems for several months. I need to avoid more steroid injections I think.

I can't even begin to describe the pain, as I am sure you know. I was given liquid morphine by an out-of-hours GP, which didn't touch it; and then a trip to A&E in the early hours in a bit of a state.

I worry about my other shoulder, as it doesn't feel "right", but the vitamin D deficiency has given me such appalling joint/bone/body pain that it has been hard to tell.

[puncturedbicycle in reply to BeansMummy]

Bless you, how horrible. Mine wasn't frozen, just progressively more tight and painful until I couldn't lift it higher than my waist or move it backward at all and it used to go into excruciating spasms. The pain is shocking, so I can't even imagine how you got through the frozen shoulder.

I think once one shoulder has gone the other must be more vulnerable as everything I did which couldn't be done with my left arm had to be done with my right - turning over in bed, reaching, washing, scratching my back, etc.

It only happened, or so I thought, because I reached back in bed lying on my side to pick up something from my bedside table, but now I wonder if we're just vulnerable and maybe it will happen no matter what.

If I were you I'd write a note to the consultant anyway. What do you have to lose? x

[BeansMummy in reply to puncturedbicycle]

I remember vividly telling a doctor that I would rather give birth again, the shoulder/arm pain was truly unbelievable. At it's worst, I couldn't move my arm without feeling that I would die.

I might give the clinic a ring, just to see what they say. Having been treated and discharged from the consultant's care on 3 previous occasions, I know what he will say when I see him again, "oh no, not you again, what have you done this time?!" It's nice to be remembered!

[Hidden in reply to BeansMummy]

This may or may not be helpful but I had an op on my shoulder, it also became frozen which was excruciating but I had regular intensive physio.

I believe what made the most difference was acupuncture that the physio used, in conjunction with soft tissue treatment.

It must be miserable for you and you have my sympathy.

[BeansMummy in reply to Hidden]

Did you have the op because you had a frozen shoulder, or because of the op? I was told that surgery might end up being my last option

I guess I will have to wait and see what the reason for the pain is this time, but I certainly wouldn't rule out acupuncture - I've never had it before, but have friends who swear by it. I don't know if it would help if there are calcium deposits there again though.

[puncturedbicycle in reply to BeansMummy]

I had acupuncture and physio as well - I have a former colleague who is an amazing physio and she uses acupuncture to touch the sheath of the muscle and relax it (or something, I don't know the details ) as well as using general therapeutic acupuncture and it did help. It was the only thing which helped me get my mobility back in that shoulder, so I was able to stretch a tiny bit without pain, and once the severe stiffness was a little better I was on the (long) road to recovery.

I think I never bothered to see the gp because I've only ever had muscle relaxants and painkillers from them and there seems little to no point of those.

The first time I was prescribed both with a back injury I took them together and had to hold onto the walls to get to the loo.

[BeansMummy in reply to puncturedbicycle]

I successfully used a chiropractor for many years for lower back and neck issues that would never have been addressed by a GP (I did request a scan once as my chiropractor was concerned about it, I was practically laughed out of the surgery).

More recently, before the shoulder problem started, I'd only visited the GP because I had a terrible pain in my wrist! I ignored it for months, because I knew visiting the GP would be pointless. The process to get referred for anything is so darned impossible, and I was also given the usual anti-inflammatories, painkillers, wrist support etc. I know you can't expect a full body scan if you go to the GP with a sore throat, but I wish mine had taken note that I only ever made an appointment after many months of pain and self-treatment, and didn't go just because I fancied a couple of hours out. By the time my wrist problem was diagnosed, I'd developed the shoulder problem. Oh, and I ended up having a spot of spinal surgery somewhere in there too. My husband thinks I should get a body transplant on the NHS, but I think the waiting list is probably pretty long.

I have no idea how true it is whatsoever, but a doctor I met told me that GP surgeries have to pay to refer people and, if they over-refer, they get fined. I might ask my GP next time if it's true!

[Hidden in reply to BeansMummy]

No, I came off my road bike at speed and ended up with a shoulder separation so now have some metal work. I started physio about a week or so afterwards, on a weekly basis but shoulder become frozen. Had it manipulated under anaesthetic with steroid injection.

If you can avoid surgery then you should. It may be that a physio who's brilliant at soft tissue work could help but you'd need to be sure that they are good so personal recommendation is your best bet.

I also had acupuncture on a large haematoma from the same accident. All this was done on weekly appointments where acupuncture was done each time. It really doesn't hurt at all!

If you do decide to have surgery then I hope you don't have too long a wait. The NHS thought it was OK to make me wait 8 months for the op, I complained and they just said they were busy. I went private in the end, same consultant.

[BeansMummy in reply to Hidden]

Yikes, that all sounds a bit too painful. I think the consultant had mentioned manipulation before, I think that having an op was the worst case scenario.

[Hidden in reply to BeansMummy]

It was painful. It was on the same side that I broke my collar bone on many years ago. The NHS were useless then, was sent away and left me lop-sided.

Would massage help, by someone who knows what they're doing obviously?

[BeansMummy in reply to Hidden]

I have absolutely no idea to be honest. I assume that my shoulder will get scanned again, and I guess the treatment offered will depend on what they see. If there are calcium deposits there again, I guess they will stick needles in me again! If it isn't that, maybe massage is the answer. I do trust the consultant, he talks to me as if I'm a grown-up

Are you pain-free now, or do you still get niggles?

[Hidden in reply to puncturedbicycle]

Wow puncturedbicycle, I too am beginning to get excruciating shoulder pain which wakes me at night. Absolutely scream out loud pain ...... I wonder if it might be a rotator cuff problem, as I've never heard of that. Do any particular symptoms go with it or is it "just" pain?

[BeansMummy in reply to Hidden]

Mine started up as a dull ache that I thought was just a bit of a strain or whatever. It got a lot worse, and was unbearable. I know when I saw the consultant, that he was able to diagnose certain issues from making me try to move my arm into certain positions; I had scans afterwards, which showed up the specific problems.

[Hidden in reply to BeansMummy]

Thanks for that BeansMummy. So far mine seems to be only when lying down so I guess I'll just see how it goes.

[shaws]

This is a link and read the answer to the question dated November 1, 1998

web.archive.org/web/2010103...

I also wonder if you have what is now called fibromyalgia (before the blood tests came in it was a known thyroid gland dysfunction).

web.archive.org/web/2010103...

[BeansMummy in reply to shaws]

The question/answer on the first link make for interesting reading, but so many big words! I have printed out lots of that info so that I can read it again later, and better understand it. I feel that my Hashimoto's seemed to be managed relatively OK for a while, it was only when I started all the severe joint pain, twitching muscles, insomnia etc. that I pushed for deficiency tests. I assumed that it was the vitamin D deficiency that was causing it all once I knew it was so low, and I have only been taking the supplements for 2 months (overall, I have improved, but it feels like it is getting worse again grrrr).

Am I right in thinking that people don't like getting a diagnosis of fibromyalgia nowadays though (because then the doctors can fob you off and not get a proper treatment)?

[shaws]

If you supplement with Vitamin B12, it should be methylcobalamin and not cyanocobalamin. Amazon has a selection and some are sublingual and excess is excreted so you don't overdose. You can click Amazon on the R/H column if you wish and thyroiduk.org get a few pence.

[BeansMummy in reply to shaws]

I wrote down which one to get when I read this on another post recently. It annoys me that I asked my GP for guidance on what I could take - she did mention Marmite ...

[Hidden in reply to BeansMummy]

Ha! - you'd have to eat quite a bit of Marmite, hope you like it! They've no idea about chronic stuff

It's interesting that GP won't consider iron supplements until VitD sorted (a friend's Mum was told B12 wouldn't work until Vit D levels improved first.)

B12 works best with complementary B complex and is better in spray form (or injection) as the whole problem is mal-absorption in the gut anyway. Folate connected but can mask low B12.

Vit C improves Iron absorption.

Vit D enables Calcium absorption & magnesium/K2 help calcium behave too otherwise the parathyroids try to sort it (so I've read anyway)

So - 1600iu daily for 'severe deficiency' ? I was only 'inadequate' and nothing much happened until I took it seriously & had 4000iu daily drops - it took time - many folk have 10000iu or more to start. Here's the Vit D council's booklet

vitamindcouncil.org/wp-cont...

IMHO I think nutrient deficiencies severely impact on Thyroid function - with medication or not and must be addressed first to stop knock-on permanent effects - so I harp on about it a lot!

I was in all-over pain for many years - strangely I didn't realise this until it went! I had 2 frozen shoulders (& bicep spaz) first took over 18 months to gradually go - second disappeared straight after my T nodule was removed. (not saying same for you - just my experience).

Your IBS exclusion diet sounds interesting - what were the triggers? I was labelled CFS/ME after my op but never had gut probs (touch wood) and although CFS/ME/Fibro conditions are debilitating there's no cure and I refused a hopeless diagnosis of something they knew nothing about! (pain eased after VitD sorted anyway - well 2 years on and OK so far) good luck! J

[BeansMummy in reply to Hidden]

Feel free to harp on a lot, the info is all very useful.

From memory, I reacted very badly to yeast, oats, bananas and strawberries most of all, with slight reactions for other foods. I obviously didn't eat them again until I had worked through lots of other foods and, when I tentatively tried them again, I was OK. It was as if the exclusion of everything in the first place gave my body a good old clearout. I suffered on a daily basis before the exclusion diet, which was just about every symptom associated with IBS, and had 2 A&E admissions, but the NHS really didn't have answers.

I do love Marmite, but there is such a negligible amount of B12 in one teaspoonful! I might work out how much is in a jarful tomorrow

I didn't think that 1600 IU vitamin D was a very high daily dose for me, and I wasn't given an initial loading dose, which I thought would have been offered. I did keep chasing it up but, by the time they took notice, I'd already been supplementing for 4 weeks. The pain I was in has lessened a bit compared to 2 months ago - but it really feels as though it is getting worse again now, my GP told me recently that it might get worse again before it gets better. I am due to be tested again at the end of this month, but she said it was unlikely that there would be much of an improvement.

It is the endo, not the GP, who doesn't want to start me on iron yet. She thought that having everything in one go would make it harder to establish which problems were related to which deficiency. It's a pile of tosh really - if I am deficient in several things, then it needs sorting. It isn't going to miraculously cure itself. I really resent that I have to sort it out at all.

I might hang fire about supplementing anything else myself until I've had the blood test at the end of this month, although I think I will contact the endo clinic and request some guidance too. It will be interesting to see how quickly I get fobbed off again.

[Hidden in reply to BeansMummy]

Don't worry been there worked out a jarfull of marmite too! sadly mostly MSGs & salt but everythings OK in moderation.

Oh I wouldn't have thought oats but rather wheat - just goes to show we can't generalise or presume here - everyone's different and as much as we'd like a pattern to follow - it just 'ain't that easy!' - my daughter had a bit of a detox type re-boot too (after amalgum poisoning - she followed Dr Myhill's advice).

Yes you're right - I tested then supplemented Vit D then magnesium/K2 (only epsom baths & brie - brie not recommended in the bath)

then a year later B12 - but was a bit daft as slow testing & supplemented beforehand a bit (I felt rotten, then better) it's tricky - trying to isolate stuff to find out which one works, but knowing they all work together! Unfortunately it seems sometimes we have to DIY on the nutrient front - as it's regarded as rubbish by those that matter

[BeansMummy in reply to Hidden]

Salt poisoning from Marmite won't be a problem, as long as my numbers are "in range."

I'd be interested to know whether you tested Brie in the bath ...

I hope your daughter is OK now. Maybe she should have eaten Marmite and Brie sandwiches (oat and wheat-free bread perhaps).

[puncturedbicycle in reply to Hidden]

spareribs please don't tell me there's msg in Marmite.

[BeansMummy in reply to puncturedbicycle]

Ok, ingredients in Marmite - yeast extract, salt, vegetable extracts, niacin, thiamin, spice extracts (which includes celery, so I reckon that could count as one of your portions of veg for the day?!), riboflavin, folic acid and B12.

My brother used to eat Marmite off a spoon like chocolate spread (but he still has a thyroid problem too!)

[Hidden in reply to BeansMummy]

I would quite happily eat Marmite (or Bovril) off a spoon instead of chocolate or syrup.....

Gosh - is there something wrong with me?

[puncturedbicycle in reply to Hidden]

My partner spreads it thickly like peanut butter. Bleurgh.

I do like it spread thinly on cold toast with unsalted butter, but maybe being so specific about it makes me a bit odd too.

[Hidden in reply to puncturedbicycle]

yep thars a msg in that dark bottle

I'm sorry, glutamate is hidden behind the yeast extract label (inc cornflakes!) originally kombu (kelp) in noodle broth, umami 'taste' extract....

actually I don't care, I like a little marmite/bovril after work on a rye cracker (with proper butter) - I can't taste but can distinguish salty, sweet or yummy!

[BeansMummy in reply to Hidden]

Oh dear, I didn't know that

I think you should delete your post so that puncturedbicycle doesn't see it! Quick !!!!

[puncturedbicycle in reply to BeansMummy]

Too late.

[Hidden in reply to puncturedbicycle]

oops!

aren't you feeling sleepy? - (Kaa from Jungle book)

[puncturedbicycle in reply to Hidden]

Gotcha.

I had a Jungle Book plate and bowl as a child.

[Hidden in reply to BeansMummy]

Hmm (she's asleep now - well should be!)

I would BUT - the Japanese (as previously referred to) often seem to live a long healthy life, and you are what you eat... (well except unfermented Soy)

And as I've given up smoking (4 months but still thinking somethings missing) B3 (Niacin/nicotenic acid) is another reason to continue my mate Marmite

[puncturedbicycle in reply to Hidden]

I had a nap this afternoon and have thrown everything off kilter so I'm still here.

Wow, congrats on quitting! Nice intense flavours will be just the thing then. May it long continue.

[BeansMummy in reply to Hidden]

Don't try smoking Marmite, that's the only advice I can offer. Good for you to have given up the ciggies though.

I hope insomnia is another symptom of vitamin D deficiency, because maybe that will improve, and I can go to bed too!!

[Hidden in reply to BeansMummy]

Thanks - now there's a thought - maybe a Marmite wrap.

I don't know if Vit D links to insomnia - lots of things in the mix - but thinking back I used to often post at 4 am or so - I did note to take VitD in morning as affects melatonin - can't find a link about that this time of night!

I'm off to Denmark in 4 weeks - Marmite banned there as fortified. It's a strange world! however have an order for a suitcase of tea & crumpets!

[BeansMummy in reply to Hidden]

I heard about the Marmite ban, I wonder if the Danes all have low B12!

[Hidden in reply to BeansMummy]

I doubt it - they are very fond of Meat - esp pork (& scratchings) bacon, eggs. proper butter and fish (that's just breakfast!) - and they have a tradition of summer houses by the sea. (2 years ago I did see the biggest pile of Vit D supplements ever in Matas (Boots)) and a lot of Mental Health research funding.... and their hot water is from a communal boiler to save energy etc - so much to learn - they have no hills and roads are straight!

Available for quizzes, excluding soaps, sport & current affairs......zzzz

[BeansMummy in reply to Hidden]

Hmm, I wouldn't be a very good Dane then, I'm a veggie! I'd like a summer house by the sea though. There again, I wouldn't last without my Marmite.

If I have any more questions about Denmark, I will make sure I earmark them for your attention

[shaws in reply to BeansMummy]

This is an interesting must watch video:-

youtube.com/watch?v=klobLSx...(Not working as expected?)

[BeansMummy in reply to shaws]

Oh dear, another hounded doctor What a shame that he is seen as the "bad guy".

We are told how we need vitamins to keep healthy, yet we can't get treatment if we are deficient. Where on earth is the sense in that.

I noted that another doctor on the video said that you had to be careful not to readily diagnose B12 to someone as it might mask something "more serious" - as excess B12 is excreted, having more isn't going to cause the patient any harm. I thought B12 deficiency was pretty serious anyway (we have pernicious anaemia in our family, which is the only reason the endo agreed to test my B12).

[Hidden]

Hi BeansMummy. Sorry about your Endo merry go

round. Last July I has surgery on my foot which necessitated two steel screws being inserted to hold the bone in place. Unfortunately one has shifted, and the screw head is now protruding through the top of my foot ..... My GP said the reason they want him to refer me anew, instead of putting me back on the list for surgery when I mentioned it at my "sign off" appt was because it's treated as a new case for which they get more revenue than if they extended my treatment.

Hope all goes well for you