Kindly requesting help again

[Tinker72]

unfortunately it now seems I have a diagnosis of Rheumatoid Arthritis as well. I’ve been really unwell with severe pain. Still waiting for an NHS appointment. Paid to see a Private Rheumatologist and I’ve also had an ultrasound scan. With all that being said, because of all the different inflammatories/doses etc I’ve fallen behind on my vitamins as was getting confused with timings - Lansoprazole/Ferrous Fumarate /Celebrex/Vit D/B12.. I’ve now stopped Celebrex and have been commenced on 20mg Prednisolone.

Always taken Levothyroxine 4 hours before Lansoprazole, but it’s been a struggle.

Tests have always been before 9am with last dose 24 hours before.

Results 9th July:

TSH 2.67 (0.27-4.2) mu/L

T3 3.8 pmol/L (3.1-6.6)

Free T4 15.2 pmol/L (11-25)

Medichecks results 3rd Aug:

CRP 31.1 mg/L (<3)

Ferritin 26.4 ug/L (30-150)

Folate 17.2 nmol/L (8.83-60.8)

Vitamin B12 Active 54.3’pmol/L (37.5-188)

Vitamin D 47.4 nmol/L (50-250)

TSH 5.05 min/L (0.27-4.2)

Free T3 3.8 pmol/L (3.1-6.8)

Free Thyroxine 15.9 pmol/L (12-22)

Peroxi Antibodies 43.2 Kiu/L (0-115)

Based on the TSH I asked my GP if I could increase Levothyroxine to 100mcg. I was told no and that I would need to re-check TSH through NHS. GP said it is far too dangerous to increase Levo.

NHS blood test 9th Aug:

TSH 2.24 mu/L (0.27-4.2)

I haven’t contacted GP again since, as I know what the answer will be. I feel really beaten down with it all 😔

Any suggestions/help would be greatly appreciated ❤️

[TiggerMe Ambassador]

Perhaps a different line of attack is needed... did your GP run a full iron panel before handing you the ferrous fumarate... mention you are concerned about anaemia... also your Vit D is under range and needs testing by them, say you are concerned about bone health. Folate and B12 could do with a boost too thought not under range so that'll be up to you... don't start anything until they have done their tests though

If you can improve these your use of Levo will improve but it still looks like you need a dose increase... get them to test these other things and then hopefully good sense will prevail 🙏 and you can drop in that Thyroid UK recommend a TSH at 1 or below 🤗

Being under dosed isn't going to help with other conditions... sorry I don't know anything about rheumatoid arthritis other than it is another autoimmune disease that we are more susceptible too 😟

[Tinker72 in reply to TiggerMe]

Thank you for your reply. It’s been a constant battle with GP as I’ve had low HB etc too, however trying to get them to repeat tests is like talking to a brick wall. I think they think I’m mad by paying for blood tests, which have been ignored. It’s getting to the point that I don’t want to contact them anymore and just suffer 😞

[TiggerMe Ambassador in reply to Tinker72]

I remember feeling like that...'It’s getting to the point that I don’t want to contact them anymore and just suffer' spoken like a true hypo!... but I now quite enjoy making them do their job 😏 I'm a big fan of the direct message system (usually accessed via their website) that allows you to contact them with your concerns and wait for a reaction 😉

Do you have any wiggle room to increase your dose by making sure you get your prescriptions asap?

For starters get yourself back on a decent Vit B complex and Vit D + K lets see if we can't re-ignite your fighting spirit 🤗

It does get massively confusing getting the supplement regime sorted.... I opt for sub-lingual to lessen the issue so Vit B complex breakfast, Vit D lunchtime ish

I don't know about the interactions with Lansoprazole and Prednisolone but I'm sure someone will be along with advice

Are you eating chicken liver for the iron a couple of times a week? They say that taking ferrous fumarate often works better on alternate days and with Vit C... I've had success using heme iron others have used patches 🤗

p.s your GP sounds like a total arse! Any scope for swapping perhaps checkout feedback on other local practices?

[Tinker72 in reply to TiggerMe]

Love this reply, thank you!

No wiggle room with prescription as the Pharmacy keep ‘forgetting’ to order my usual brand, therefore I am having only a 2 weeks supply at a time.

I bought a pill tray yesterday and lined up the sprays, so helpfully I can get back on tack now. It’s just been a nightmare keeping up with when you’re in so much pain 24/7 that you have to crawl upstairs!

I will try the chicken liver, and I was taking orange juice with iron previously.

I always go online and write my requests/concerns to the GP. One GP has been excellent, however they have been away recently. I’ll have to contact them again next week.

Thank you for you advice 🤗🤗

[TiggerMe Ambassador in reply to Tinker72]

Great work, a bit of organisation should beat the foggy head

Go forth and be a 'Pain in the Arse' 🤗 you are so worth it!

They start to be a bit more helpful when they realise you are persistent 😏

[Batty1 in reply to Tinker72]

Don’t suffer. Can’t you go back to the original rheumatologist that diagnosed you with RA?

I suffer with both hypothyroidism and psoriatic arthritis and its a difficult balance between the world of pain and the world of hormonal stress and because prednisone isn’t a forever drug the rheumatologist should provide you with a medication thats better to handle the RA on a more permanent basis and not just asprin…. The longer you go with uncontrolled RA the worse the outcome and I know this first hand…. I have days I can’t even move like a human.

[Tinker72 in reply to Batty1]

The Consultant I saw has been excellent, however he works out of a private hospital and an area which is not in my catchment. I honestly can’t praise how good he’s been. To be fair to him, he rings and checks up on me and also has told me to email him if my symptoms worsening when reducing the Prednisolone. Like he said, any long term therapies will need to be managed locally, however I’m still waiting for NHS. He has suggested treatments that my GP could commence after the Prednisolone, but they would have to agree to the monitoring. The way GP is at present, can’t see that happening. Fingers crossed I’ll get an appointment soon.

[Batty1 in reply to Tinker72]

I guess I don’t understand why you can’t keep seeing this Rheumatologist if your willing to drive and pay to see him?

What medication did he suggest besides steroids?

[Tinker72 in reply to Batty1]

It would be something like Methotrexate, however you need bloods/X-ray monitoring whilst on treatment etc and that would end up very costly going private.

[Batty1 in reply to Tinker72]

Methotrexate is a first gen drug so its not as expensive as you might think and Im not sure why you would need continuous xrays for RA anyway couldn’t you still get your blood test and medication on the NHS if the Rheumatologist provides you a prescription?

Im obviously in the US but I pay out of pocket for my Rheumatologist but I get my blood test and medication through my healthcare provider.

[Tinker72 in reply to Batty1]

Hi, it’s not about the cost of the drug. It’s about the monitoring of bloods etc whilst commenced on it. For example, I needed CCP bloods checked, therefore the Rheumatologist requested the GP request as he said it was very expensive to have it done in the private hospital. To be fair, he didn’t have to do that and just charge me whatever. Issue is, whoever requests the blood test/X-ray is responsible for acting upon them etc. GP wasn’t happy prescribing Prednisolone, let alone anything else!! HeyHo!

[Regenallotment Ambassador]

I saw a locum last week who when I told her what supplements I was taking raised her eyebrows and said (pushing my Medichecks tests results away) refreshingly well the NHS had better test all that lot and get the results on the system, any mention of “worried about toxicity” seemed to do the trick.

I’ve done a few years of not engaging too much with GP and paying for private but I feel like the practice has moved on. They seem open to resolving specific symptoms and worries.

I was super focused though and just kept to one worry and kept quiet when she was looking at thyroid history etc.

I might feel differently at the follow up but I would say, do use the system, it’s what it’s there for 🌱

[TiggerMe Ambassador]

Have you tried cutting dairy and gluten from your diet? How about taking levo at night or if you get up for a pee to avoid all the other things?

[Tinker72 in reply to TiggerMe]

I tried the gluten but no change. I’ve now started trying to take the Levo when I wake in the middle of the night 😴

[TiggerMe Ambassador in reply to Tinker72]

All worth a try... I find wheat is ok but barley curls me up... also nightshades, have you tried ditching tomatoes, peppers, potatoes etc? They can make your joints flair

[Tinker72 in reply to TiggerMe]

No haven’t tried that yet. I was more concerned that my muzzy/off balance head is even more than before. I’m also a lot more fatigued, so was wondering if it was all to do with my TSH being more raised that previous tests. I don’t know, it’s all very frustrating. Thank you for your help though ❤️

[virtualreality]

Hi Tinker72 , not an easy combination to have to deal with, I feel for you. I developed RA a couple of years ago having been hypothyroid for years, and found it destabilised my thyroid function for a while, so you're wise to keep an eye on that. I had to increase my levo dose a bit to deal with that and my GP wasn't keen either (partly, understandably, because the prednisolone increased my blood pressure for a time, though thankfully that settled down). My argument was that my thyroid function had been stable for years and I wanted to get my TSH back to where it had been before the RA, which was accepted. One thing that might help you is testing TSH slightly earlier in the day - say 7-8am - because it's falling from the early hours onwards so would usually be lower at 9am (unless the cycle is different for you of course). If your TSH is different from what's usual for you and closer to the upper limit of the 'normal range' your GP might be more inclined to take action. Not an easy set of symptoms / medications / side effects to juggle though, that's for sure. Wishing you the very best.

[Tinker72 in reply to virtualreality]

Thank you very much for your advice and best wishes to you too ❤️

[Swissgirl]

Hi Tinker72 . I am very sorry to hear about the RA diagnosis and the pain you are suffering. I have diagnosed Hashis, Chronic Fatigue Syndrome, Fibromyalgia, Mast Cell Activation Syndrome and arthritis. I am also in daily nerve, joint and muscle pain, although it fluctuates from day to day and throughout the day and night. Two things I have found that really really help and with practically no side effects are the following: Low Dose Naltrexone ( LDN - I take 1mg at Night and 2mg in the morning) and MSM with glucosamine and chrondroitin. The MSM was to help with the arthritis pain, but it is not RA. I had to stop the MSM as I am sulphur intolerant and unfortunately it was making the intestinal symptoms worse. However, I have read studies online and on the LDN FB groups that LDN is very effective for RA pain and inflammation. Hope that helps. All the best.

[Tinker72 in reply to Swissgirl]

Thank you very much for your reply and advice, sounds really interesting and I will certainly look into these ❤️