My daughter who has had Hashimotos for 8 years has developed Thyroid eye disease and her TSHAntibodies are raised but not to a level at which Endos will treat. She suffers a lot but manages to be a good wife and mother and holds down a demanding job.
The Endo prescribed Pharmaceutical level Selenium @ 100mg(?) x2 daily. She had great trouble getting this dispensed. Eventually Tesco dispensed 3 months of the 6 months prescribed, and told her to come back in three months. They gave her no owing note.. She responded well to the treatment but when she went back to Tesco they refused to dispense it for her claiming no knowledge of it.
Knowing that the Endo had written to her GPs asking them to prescribe it in future, she asked them for a new prescription. They refused. When she complained the Senior Partner told her there was no letter from the Endo and issued an order to all partners not to prescribe it as it isn't included in the Nice list of allowed medicines.
She has contacted the Endo who has sent her a new prescription and said he will re send the letter to the GPs but she is still at a loss to find somewhere to dispense it for her. She has tried buying her own from H &B ,Boots etc but they do not work well for her and her eyes are getting in a very sorry state.
Any solutions? Could Roseway help? I don't know much about them.
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Mugs19
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Please pay particular attention to the last sentence in the reply - buying the wrong kind of selenium could explain why your daughter is not doing as well on the selenium she bought herself as she did with the one she was prescribed with.
I tried taking a selenium supplement a few years ago but I found 200mg a day too high a dose. I tolerated 100mg much better.
Maybe it was a lesser form of selenium? Check label for l-selenomethionine and yeast bound selenium which are best & bioavailable forms, avoid selenite and selenate.
I think Id still look to buy it over the counter & save the stress.
It would 200mcg, (not mg) reduce to 100mcg after total of 6 months at that level.
Natural food sources of selenium, Brazil nuts (if grown in selenium rich soil), fish, meat, oats, spinach, mushrooms, brown rice,sunflower seeds.
So if eating a diet including lots of these you’d need to beware of signs of overdosing:
Garlic breath
Nausea
Diarrhea
Skin rashes
Irritability
Metallic taste in the mouth
Brittle hair or nails
Loss of hair or nails
Discoloured teeth
Nervous system problems
Is she using any other methods / drops to treat eyes?
TRab level is irrelevant to TED severity. There is no antibodies or any blood test to confirm TED. It’s just that in many cases TRab (which test blocking, stimulating & neural antibodies / are positive & this is evidence of Graves which is associated with TED.
Most people who develop TED have an overactive thyroid and Grave’s Disease, whereas some have it with an under active thyroid/ Hashimotos (like myself) and a few have it who are euthyroid (no thyroid condition).
I recommend your daughter continues to find a selenium supplement of 200ug daily, that she can tolerate, as this has showed to help in mild/ moderate TED when taken in the first 6 months. Many take a maintenance dose of 100ug daily when the active phase of the condition has passed. If she cannot find a selenium source suitable, look at the selenium content in Brazil nuts. Depending on the selenium quality of the soil where they are grown, each Brazil nuts can contain 50-90ug selenium. I suggests checking the back of packets if this is a route you wish to explore. It’s important not to exceed 200ug daily (as selenium of 400ug per day has shown to be toxic)
Preservative free lubricating eye drops are important, such as HycoSan or Hyloforte. For light sensitivity wear sunglasses (even indoors if needed). If she has any eye pain, my TED ophthalmologist said to take ibuprofen (with food to protect your stomach). Also worth doing is using 2 pillows at night, to elevate your head.
Above all, please tell her not to overdo it on Google images, as they show ‘worst case’ scenarios. It is worth taking photos of her eyes (& storing in ‘hidden’ on phone) to show endocrinologists/ ophthalmologists as needed.
I received great advice and support from TEDct, so do get their information pack. They run a telephone advice line, hold regular webinars and have a Facebook group. TEDct helped me find a TED specialist ophthalmologist in my area.
When she complained the Senior Partner told her there was no letter from the Endo and issued an order to all partners not to prescribe it as it isn't included in the Nice list of allowed medicines.
The Senior Partner might or might not have been lying.
The reason it is possible the doctor wasn't lying is because different CCGs (Clinical Commissioning Groups) have their own version of the BNF (British National Formulary) which just contains the things that that CCG is prepared to allow doctors to prescribe. So if your local CCG had decided that treating selenium deficiency isn't a priority they could have just removed it from their own version of the BNF.
Yes, Thankyou for that. I had looked myself and NICE do list several kinds of selenium. I was prescribed it myself by anEndo from this same CCG but could not get it dispensed so gave up and started buying it. What I wondered was whether she could get Roseway to dispense it if the Endo gives her long lasting prescriptions.
They don’t usually do that because the GP is supposed to take over the prescribing and hospital pharmacies may be regulated. It is a long trip to the hospital and she would almost certainly have to go back for it as they never have it in stock.
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