Can I pick some brains please.

[Polo22]

So still can't get GP to reinstate my 150mcg Levo repeat prescription, the one she lied about me agreeing to. I have a BH kit ready, will do it Monday and see what's what.

As an aside, I feel really S**t at the moment, anxiety ridiculous, fatigue, poor sleep, not much interest in food, hair falling out is bad, cold, etc. Brain fog, swinging from spaced out to chatting S**t. All the usual aches, pains, but now my chest aches too, had a cough since November, has short course of Amoxycillin, which helped a little, but it hasn't gone away. Several Doc's have listened to chest and say it's clear, feels almost like asthma, I have experienced anxiety induced asthma in past. Had an appointment with Rheumatology wasn't great, anti body screens negative, there are signs of arthritis, but reading stuff I thought she might say RA, she said No, she said she was surprised that there is synovial thickening and active synovitis which is usually found it RA but kept saying it was "inflammatory" but didn't think RA. What really twisted my nipples was she completely dismissed the problem with my left foot. The report I got before appointment , didn't have time to read mentions Haglund's deformity to left heel, "left achilles is thickened at the insertion AP diameter of 9mm, with associated enthesophytes and is thickened for 60mm in length from calcaneal insertion" I pointed out to her the pain is excruciating and poor mobility was my primary concern. She pulled a weird face, really weird and said well we'll send you to physio but we don't really do ankles. WTAF. At this point I was getting really angry, you know when your eyes start leaking resisting the urge to throttle someone. I pointed out in the last 2 1/2 years I have been referred to physio 3 times, spent hours, weeks, months stretching applying topical analgesia , F**king foot spars and it's getting worse. So we ended on her saying they wanted to try injections, Hydroxychloroquine, see if it helps and if it does keep going. I wanted to think about it,tried to explain I am having a hard time getting my health back and wanted to check this wouldn't impact negatively. She appeared annoyed and said well we could just leave it, I said again I wanted to think about it. I then said I had an appointment next week for a hysteroscopy to see if had cancer so she can wait till I know if I am going to die or not. So she'll arrange appointment for 3 to 4 weeks. Also anyone have a Mirena coil fitted, the Women's Hospital said they usually fit on at end of hysteroscopy to help/part of treatment ? I can't think straight 🤯🤯🤔 Gold Stars to anyone who reads this far

[FallingInReverse]

Rheumatologist sounds like a heartless *****. We all hate hearing it, it’s just awful.

[Sparklingsunshine]

Sorry have you got heel spurs in your foot, I wasnt sure? If so could you ask for a referral to Orthopaedics. I had heel spurs years ago, they were crippling and with the plantar faciitis I could barely walk. I tried everything treatment wise but in the end I pushed for them to be surgically removed which got rid of the problem.

[Polo22 in reply to Sparklingsunshine]

Yes apparently there are/is a spur/s left heel only I think. Apparently the achilles tendon is thick and calcified at insertion , possible ossification. I never do anything simple.

[Sparklingsunshine in reply to Polo22]

I fannied about with podiatry for 2 years, having various insoles, steroid injection ( not recommended unless you are a masochist), even a night splint, akin to a medieval torture device, which you wear at night in bed to stop your foot from relaxing.

I did all the exercises, the stretches etc. In the end I was so immobilised I had to throw in the towel and get surgery. I have Ehlers Danlos and have always had foot issues. I saw a podiatrist surgeon this week for yet another foot problem and he told me I have knock knees, where my knees turn inwards due to hypermobility. Haha EDS, the gift that keeps on giving 😪

[Polo22 in reply to Sparklingsunshine]

Oh yes, have had steroid injections, the Spanish inquisition would have loved them, had them in other Achilles years ago and had them in both knees, and NO I am not a Masochist 😂. Love the "fannied about" so much more eloquent and poetic than Arsing about 😜

[Sparklingsunshine in reply to Polo22]

The heel spur Op was a day surgery, I had an epidural so watched it on the screen, they found 2 spurs, one behind the other. They couldnt see the second one on the Xray. I went home the same day, just had to stay off my feet for a bit as the stitches can pop open as there isnt much flesh for them to grip onto. It was so worth it. Maybe something to consider.

I also remember being told I didnt have much fat in my heel pad, which undoubtedly meant the heel spurs were more painful. I quipped that I had plenty elsewhere and couldnt they use liposuction and inject some fat in 😁

[Polo22 in reply to Sparklingsunshine]

Yes all very well having skinny heels but I'd quite like a skinny bum and tum🤭, it would make sense though no padding making it more painful. The pain when trying to get comfy on couch, you try to shove yourself back with your feet and one slips and smacks the frame of the couch at speed, I literally squealed and sobbed it was the worst

[CallMeSunny]

sorry to hear you’re suffering so much, particularly when all you want is someone knowledgeable to really LISTEN to you…..so frustrating. Good advice from Polo22 re Orthopaedics. Re Hydroxychloroquine, have a look at the NRAS website (Rheumatoid Arthritis)… you might also find it helpful to have a chat with someone from their amazing helpline. Inflammatory Arthritis is a form of RA too. Best of luck ploughing your way through the fog: you’ll get there.

[Aerocyc]

🫂🫂

[arTistapple]

Isn’t Achilles tendon stuff mentioned in the ‘old story’ of hypothyroidism? It used to be part of the ‘signs’ of hypo and was regularly tested. Not diagnosed properly in your case. Under medicated most likely. AND physio unlikely to help much due to the nature of the ‘thickening’.

[AlphaWolf5195]

Have you had a chest X-ray for your cough? In the past I had had pneumonia on both lungs which showed up on an X-ray even though my chest sounded clear when Drs listened to it. I spent 10 days in hospital, had 4 different Drs listen to my chest during that time and every one said it sounded clear. I had to have 2 courses of different antibiotics to clear it up.

[Polo22 in reply to AlphaWolf5195]

Bugger, 🤔🤫 don't tell my Hubby, he who is always right, has been telling me for couple of months now to ask for more medicine and or a chest X-ray , he is often right but you can't let him know that too often. Will ask for X-ray, my sinuses have always been a problem , constantly inflamed/infections which leads to that horrible gunky feeling of muck dripping dangling at back of soft palate/throat , told them I often have upper respiratory tract infections and listening to my chest will not show anything. It's a feeling I can't really explain, sort of air hungry, as if someone has squished your windpipe, just enough to catch your breath, bit like when you have palpitations, I am not explaining this right

[AlphaWolf5195 in reply to Polo22]

I know exactly what you mean, I suffer from post nasal drip a lot which feels like gunk running down the back of my throat and can feel as if I’m not getting enough air/oxygen even though I am. I can’t use the medicated sprays they tried me on as had horrendous side effects from them. I sleep on a wedge pillow and use Sterimar Breathe Easy Nasal spray which is 100% natural sea water which helps a bit.

Hope you can get your health problems all sorted out so you can start to feel better.

[Wua13262348 in reply to Polo22]

They tell you to go to x ray the same day, no appointment necessary, no waiting, in within 5 mins, if you cough up blood. Happened to me. Up to you how desperate you are for a chest x ray. Five month wait for a spirometer test, however. Did get amoxicillin for crackly lung sounds and told to go to x ray immediately. Fell asleep and too ill to go that day. I also had an E coli UTI , I had had for exactly a year which 2 lab indentified antibiotics failed to clear. Amoxicillin considered no good for e coli UTI, but cleared the UTI. I had had the UTI a year. Cleared up for a month, and came back. Further course of amoxicillin has cleared it again meantime. I think my FT3 needs to be above 5.7ish or it will keep recurring.

Podiatry department (NHS) for your foot problem likely would be a waiting time of a couple years. Private , a couple of days. Got the t- shirt on that one. They may be able to give you orthotics to alter the way you walk and take pressure off the problem area. I am hypermobile too, and have flexible flat feet where the arches collapse on walking. Common when hypermobile. Feet look arched and normal, so rheumatology don't realise you have flat feet. It would be unusual to have hypermobility and not have either flat feet, which may look normal, or a highly arched foot, both of which cause problems. I have never been to NHS podiatry, but they may be able to suggest a surgical solution for your foot problems.

I really feel for you. constantly painful feet are no joke. Multiple other problems you can also do without.

[Polo22 in reply to AlphaWolf5195]

Weirdly not long after commenting had a call from GP's surgery the original Doc refuses to change her mind apparently, her opinion is valid she believes about reduction in Levo. A different GP will call me this afternoon to discuss so I 'll ask for a chest x-ray, ducks being lined up.

[NanaV54]

Psoriatic arthritis is always seronegative. And you don't have to have a history of typical psoriasis to be diagnosed. There are many types of psoriasis from eyes, to scalp, etc. psoriatic arthritis is diagnosed by symptoms. Treatment is the pretty much the same as RA (i.e. hydrochlorothiazide and antiinflammatories) and it DOES involve synovial fluid and heel pain. I only know this because my husband is diagnosed seronegative polyarthropathy (seronegative RA) but she knows it could be psoriatic arthritis. Part of the diagnosis is which joints are most affected. If you have Hashimotos, you are more likely to have other autoimmune disorders. Sounds like you need a new Rheumatologist. I'm beginning to think that rheumatologists, like endocrinologists, specialist on specific disorders within their fields. My husband's had no problem with a diagnosis of seronegative RA.

[Polo22 in reply to NanaV54]

Thank you for response, beginning to think I was going crazy. Well more crazy. not sure if it's the same but have had skin issues on feet particularly for years, the left foot most painful is worse. Itchy, raw, it blisters , then peels and often bit soggy like when blisters burst. My heal on that foot is grim, skin builds up into thick white scaley , it gets so hard it splits sometimes , really deep and bleeds, then takes ages to heal. I try to keep it moisturised , soaking, then moisturizing, can sometimes catch and chunks get ripped off, sounds disgusting doesn't it, it is. Some areas of skin are often quite taught/shiny and itchy feeling. My scalp drives me mad, itchy and often it hurts as when I scratch there are very tender/sore lumps and pimple things.

[Wua13262348]

Regarding the problems you have with your feet. As an experiment , I would suggest you order a pair of short mukluk sheepskin boots (outdoor boots but can be worn as slippers) by FitFlop, on the internet. They have the original wobbleboard technology soles and can be worn big, with enough room for your heels not to be at the back of the boot. There are cut price sites as well as reductions on the FitFlop site. They are returnable. You may find that they reduce your pain and relieve pressure and redistribute your weight when walking. I think they may help considerably. They are expensive , but worth it , especially if you usually have cold feet. The range they sell is extensive , but not all have the original wobbleboard technology soles. If they are returnable, you can return them if you don't find they benefit you. You may be amazed how much they help. For backless footwear, have you tried Birkenstocks? They force you to walk off your big toe, which is how we are supposed to walk. They have 3 different arch supports. Again, order on the internet and return if don't feel they benefit you.