Has anyone with JHS/hEDS noticed any improvement with...

[Schilddruse]

... hypothyroidism treatment? If so, did T4 alone help or did you need to add some T3 into the mix?

... Methylfolate as suggested by researchers at Tulane University earlier this year?

... anything else?

I'm desperately clutching at straws in the hope that something might help because otherwise there seems to be a diagnosis and then little else except physio, podiatrist etc. I'm not asking for myself btw, which is why I'm not being forthcoming with details.

[cyberbarn]

I have hEDS and Hashimoto's thyroiditis, the most common form of hypothyroidism. I wouldn't say there was any improvement to my EDS with treatment of the Hashi's. My main symptoms are weight gain, fatigue, constipation and feeling cold, plus low heart rate. I didn't have any of these symptoms before the Hashi's happened. However, my MSK pain has got worse. I was subsequently diagnosed with psoriatic arthritis. So that may not be from the EDS either.

As for T3/T4, there are subgroups of people for whom T4 alone are enough. But you have to have blood tests that show that T3 is very low before knowing that T3 would be helpful. And the NHS doesn't test for T3. It is easy to get it tested privately though.

The thing is, the symptoms for all these conditions, thyroid disease, autoimmune disease, and EDS, are not hard and fast, and overlap. for instance I never really had any problems with pain for many years before the arthritis kicked in. And once you have one autoimmune disease it is more likely that you will get more, and there is a cluster that includes sjogrens, rheumatoid arthritis and hashimoto's. This is likely not part of EDS, but EDS might not help.

So in conclusion, yes, some people but not all don't do well on T4 only. If someone actually has hEDS diagnosed before and with symptoms before the treatment of hypothyroid conditions then it isn't likely that there will be any improvement to their actual EDS symptoms, but they should find improvement generally in the symptoms that might cross over with EDS because those symptoms might have been caused by a thyroid problem and not innately EDS.

[Schilddruse in reply to cyberbarn]

Thanks for your reply. I think it's particularly difficult to disentangle what's going on when both the hEDS and the hypothyroid symptoms (which, as you say, can overlap) start at the same time rather than sequentially.

[cyberbarn in reply to Schilddruse]

hEDS should be present from birth as it is a genetic condition. how it effects people can change throughout their lives. But there are over 200 connective tissue disorders, some that start later in life, so if the symptoms are starting at the same time it might not be hEDS but something else. The problem now is that people have heard so much about EDS that it can be easy to assume that all hypermobility is EDS which stops patients getting the treatments and diagnosis that they should really have.

[Blearyeyed]

I don't have thyroid issues but do have other health problems along with EDS including Vitamin B12 and Folate Deficiency which can sometimes cause acute thyroid symptoms.I also have Pancreatic Enzyme Insufficiency.

Improving my vitamin and mineral intake over the years has helped to reduce the side symptoms of EDS like Fatigue and Brain Fog and speed up my recovery and healing after injuries. But medications for other illnesses don't really make any difference to my EDS except for helping me to have more energy to be able to cope with trying to keep active and exercise in a way to strengthen my muscles and reduce how often I have injuries.

I would assume managing your thyroid symptoms well would have a similar effect to me getting my vitamin deficiencies and Fibro pain under control.

[Schilddruse in reply to Blearyeyed]

Thanks, that makes a lot of sense, and the point about optimising vitamins and minerals is a good one.