Hi all, any experience or advice on this would be much appreciated.
I have been on thyroxine for 25 years since having Hashimotos at the age of 29. I've also been diagnosed a while ago with Ehlers Danlos Syndrome and Fibromyalgia (both connective tissue disorders.) My new GP is messing about with my dose and has reduced it quite a lot over the course of the last year. She says the blood tests are within the normal range but I feel dreadful.
When I was diagnosed with the EDS, the consultant advised I would always need to let dentists and medics know that I would not 'take up' local anaesthetics well, and this has been true, though until recently I haven't met a dentist that knew anything about it. My new dentist does, phew!
So I have a theory that I do not take up, or absorb Levothyroxine properly despite what the blood test results say. The GP won't be moved by any appeal to her for an increased dose (was on 175/150 alternate days for 25 years, now on 125).
I am now unable to walk anything other than a very short distance, stairs a major pain, and this is all joint pain stuff - as well as the usual hypothyroid symptoms. I feel dreadful.
It would really help to take some kind of medical evidence or report to my next appointment with her, some kind of research that could support my theory. Nothing on the EDS websites UK.
Many thanks!
Helen
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hcmoss68
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But I did write a little blog entry some time ago. It is just possible it might help lead you in a helpful direction.
Jessica Eccles - Hypermobilty/Ehlers-Danlos
This is a blog post originated from listening to a radio program by Dr Jessica Eccles about Hypermobilty/Ehlers-Danlos. Despite not being about thyroid, it might well be worth a look and even a listen.
However, BBC tend to withdraw some programs after a while - some seem to remain for years, others a year, months, or less.
If your dose has been reduced and significantly so, then you're really not going to be feeling great anyway, poor absorption or not.
You had some very good recommendations in your last post. Have you managed to get your vitamin levels tested and begun supplementing? healthunlocked.com/thyroidu...
Is it just one GP that you see at the practice or are all of them of the same opinion?
Is seeing a private doctor or Endo an option?
GPs and Endo's often go by TSH. This makes it really important to time your blood test for 9am or earlier when TSH is at its highest.
As your thyroid hormone levels have been low for a while now then the result will be low vitamin levels. This is a vicious circle as low vitamin levels cause multiple symptoms on their own and then you have the thyroid symptoms on top.
To get our thyroid hormone working well we need OPTIMAL levels of vitamins. Thats your first step towards feeling better. It might also help your TSH and conversion of T4 to T3.
I'm not sure that theres any written evidence about poor absorption in EDS. many people with EDS do have restricted diets for a number of reasons which in itself can cause low nutrient levels. Being hypothyroid causes low stomach acid which lowers nutrient absorption from food.
The answer is to test your levels and supplement what you are low in.
Yes, thank you for your help and all the good advice. I do take multi vitamins and trace minerals daily. I have been on this experimental process with the gp for a year, as yet I have not seen them but will be doing so on Thursday. They want to converse via text or email, with a couple of phone calls. I also have Aspergers and dread going because they always seem so hostile and unwilling to help, and I can't speak well at times or advocate for myself well, but I am writing everything down I want to say so I can take that. Thank you for your suggestions.
Get FULL thyroid and vitamin testing ensure you test early, before 9am, only drinking water between waking and test and last dose levothyroxine 24 hours before test
Stop any vitamin supplements that contain biotin 5-7 days before test
Come back with new post once you get results
If GP still won’t increase dose
See thyroid specialist
Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists who will prescribe T3 if necessary
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations
Coincidentally I just read the latest email from EDS UK which mentions resistance to local anaesthetics. I'll copy and paste it but it seems they aren't sure of the cause of this issue.
Local anaesthesia resistance
Individuals with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) often report increased resistance to local anaesthetics. This phenomenon is not universally experienced by all people with these conditions, but it is notably common.
This resistance is more frequently observed in dental procedures but can occur in other medical settings as well. The exact reasons for this resistance are not entirely clear, but several theories exist. These include abnormalities in connective tissue that might affect the diffusion of anaesthetics, genetic factors influencing anaesthetic metabolism, and potential differences in nerve fiber density.
In a 2019 study, the most effective local anaesthetic agents among EDS respondents were articaine, bupivacaine, and mepivacaine, with lidocaine and procaine reported as effective far less often. The most effective agent (articaine) was effective in only 30% of people with EDS.
Due to the variability in response to local anesthetics, EDS and HSD patients often require higher doses or alternative pain management strategies. Anaesthetists should be aware of these challenges and may need to adjust their approach to ensure effective pain relief.
I asked my dentist recently (the first one who knew there would be a problem with anaesthetics before I even mentioned it) and I asked her why this happens? She didn't know much but its because the teeth are held in the gums by ligaments, and as a connective tissue and with EDS being a connective tissue disorder (too much collagen) it is not able to respond or uptake properly. This is why I think I (and anyone else who is or is not yet diagnosed with hypermobile EDS) does not absorb thyroxine properly and needs a slightly higher than usual dose, and why I feel normal on 150/175 even when the bit of paper says I ought not to. After all, no one took my thyroxine levels before I had Hashimotos, so what is normal for me - no one knows. My previous gp was sympathetic, my consultant of 20 years ago stated it as a possible complication, but these notes are lost and I've no idea who or when I saw this consultant. So I'm looking for proof. None so far. Certainly my dose for the last six months of only 125 now means I can hardly walk, but I fear the NICE guidelines don't give a cr*p.
Wow! Someone has finally found local anesthetic does not work for some of us with EDS! I have been telling my dentist and medical staff that local anesthetic does not work at all for me for years and been completely ignored! I have been told it is not possible, that I am making things up. So much so that I underwent an operation with local anesthetic and fainted from the pain. I was told I was a drama queen!
Because of my one adrenal gland struggling, I was also told not to have any locals with adrenalin in (they include that to speed up the numbing effect). My now brilliant young dentist has to order in special LA for me.
Oddly enough, I asked my vet about LA's and EDS. She told me it was something to do with calcuim channels straight away and seemed to know a bit about it.
It did not matter how much Levo I took - at one time on 350 dose a day and my levels were all below the ranges. T3 helped, but NDT (3 a day) has mostly sorted it. I dont know if this is an absorption issue but it could have been.
I am just delighted that at last the fact that LA's may not work with us with EDS is now found to be true and I am not a drama queen. Quite made my day, so thanks hcmoss68 .
A few years ago, I came across an article from some research bods asking for suggestions for medical research, so I wrote to them and suggested the EDS and LA connection. They got all excited for a while and then found something easier I think. I get looked at sideways when I say I have EDS so usually bend down and put my hands flat on the floor - and they cannot touch their toes! For some reason this makes them grumpy. You cannot win!
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