I've been clear of all medicine for the last couple of years. However, my latest MRI of my hands and wrists has shown lots of inflammation around the tendons and bones in my hand. My rheumatologist wants me to start taking steroids and then other immune suppressants further down the road.
I have many different symptoms, but my worst one has got to be chronic fatigue. Lately, my tendon/bone inflammation has come a close second, making me struggle with everyday tasks. I'm HypoThyroid and not receiving any treatment for that due to the fact I supplemented with iodine. Hence, the GP wants to wait six months to see if it resolves itself, even though I've been subclinical for a couple of years. My theory is that my extreme hypothyroidism has made my pain worse, as the timeline correlates with my hands getting bad.
This is something I am firmly against and I was hoping some of you have tried LDN before. Any info would be greatly appreciated.
Written by
HealthCoachLupus
To view profiles and participate in discussions please or .
I use LDN for lupus, and it's meant to be very good for thyroid issues. I've been using it for five years, 4mg and skip a day a week so the receptors clear (which can stop it working). I noticed a difference when I first start using it, of stabilising my condition and giving me more energy, but I was already on steroids and hydroxy by then. If I could do it all over again, I'd start with LDN and diet and see if that made a difference, as my lupus is 'mild' (non-organ affecting) so I wasn't in immanent danger of dying. Everyone is different though and you need to discuss your disease with your rheumatologist etc. Some know a bit about LDN but you basically have to read up about it and get a private consult from Dickson's Chemist.
Hi I've been taking LDN, mainly as pain relief, for 5 years.
Private prescription from Dickson's chemist, have found them to be very reliable and helpful.
Interestingly, I was told that there's no need to have a break from it to reset receptors but I'd like to know more about this.
They supply tablets, capsules or sublingual drops, which I take.
4.5 ml/day which is 9 drops, it's advised to work up slowly to this over several weeks, starting at 0.5 ml (1 drop) and increasing by 0.5ml every 2 weeks.
Their doctor advised taking in the morning as apparently some users complain about vivid dreams otherwise.
Not had any unwanted side effects, think my hair has been thicker and it has helped to lessen joint pain.
“I'm HypoThyroid and not receiving any treatment for that due to the fact I supplemented with iodine. Hence, the GP wants to wait six months to see if it resolves itself,..”
-+-+-+
Your above statement is very alarming!😢
Your GP should refer you an endocrinologist where your thyroid hormones can be fully assessed!
T4, T3 and TSF all need to be fully assessed by blood sample. You could be suffering primary hypothyroidism and may need hormone replacement treatment eg Levothyroxine?
I’m very surprised by this “wait and see” attitude from this GP!👆
Supplementing with iodine is not an excuse/solution for a full thyroid gland assessment.
In the UK hypothyroidism is managed by a GP, not an endo. The OP actually states they have subclinical hypothyroidism, so testing has obviously been done, and the protocol in this situation is simply monitoring. In addition, iodine supplementation can make certain thyroid conditions worse, so it is important that things are left to see if they resolve themselves before commencing treatment which may be unnecessary and even damaging. The GP in this instance is acting correctly.
I disagree. The GP in this instance is far too laid back! A full thyroid assessment from a trained endocrinologist is required. Patient has been suffering too long!
I would suggest you read the excellent response from Feelgoodbooks about the risks to this GP’s approach.
The reference to the Thyroid UK forum is most helpful. THANKS.
I suggest you refer to the NICE guidelines for the treatment of hypothyroidism by a GP. Hypothyroidism is treated by a GP unless it cannot be managed due to exxceptional circumstances, as only hyperthyroidism is referred to an endo. Subclinical hypothyroidism, which the OP states that they have, is generally not treated for very good reason, as taking replacement hormone unnecessarily can do more harm than good. We are not in possession of the facts regarding the OP's exact thyroid levels, only the fact that they self-treated with iodine, which is not recommended unless abnormal thyroid levels have been attributed to diagnosed iodine deficiency., because iodine can negatively affect thyroid levels. The Thyroid UK forum has its own agenda which is not necessarily helpful, IMO, I'm afraid. My advice comes from personal experience of being one of a hypo/Hashimoto's family.
Depending if you have hashimotos thyroiditis, supplementing with iodine can make your hypothyroidism worst. If you post on thyroidUK forum they will advise you. They are brilliant.
Hypothyroidism can cause extreme fatigue, joint paint and a lot of other symptoms.
If untreated it can cause a lot of problems, including heart problems, nerve damage, and more. I don't know how severe your lupus is, but hypothyroidism can cause you to be a lot more sick than your lupus if untreated. Please look after yourself. Best of luck 🍀
I have and it has helped my fibromyalgia pain very much. I have SLE (Lupus) not RA. It has not helped with joint pain or fatigue, but that’s just me. The muscle pain is intollerable when I run out. I’m on a 3.5 mg dose, once a day
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Anyone had a cystoscopy?
I'm going to start taking LDN
Anyone had elbow surgery?
Just diagnosed 
